Have you ever needed a certain pair of shoes for an event and borrowed some from a friend? They don't really fit right do they? They are already molded to their owner's feet - not yours. Good news - you get to take them off eventually.
However some people are left wearing their shoes for much longer. The grow to be uncomfortable and tight. They pinch the toes and blister the heels. You long for another pair - a pair made just for you...your comfort in mind. But you are left waiting it out. And even though your feet are swollen and aching, and your shoes are scuffed and worn out...you appreciate the fact that they were given to you.
My shoes were given to me the day Matthew was born. I don't know who the previous owner was, but I am grateful for the hand-me-downs. The shoes I had were "caretaker" shoes, and they are the hardest shoes to fill!
Whether you are caring for your mother during hip replacement and rehab or a cousin with leukemia...it is equally daunting. It is never ending. There are no ribbons for first place - there is life. You won't get a medal for going the longest without sleep - you'll get exhausted. If you can not find the energy to bathe and feed yourself at the end of the day, then you'll just be smelly and hungry that night.
No one understands a caretaker more than another caretaker. We all hope for the other one that their amount of time in our shoes is short. But some will never take off their shoes - ever. Some mothers to babies with debilitating diseases will never know what it is like to soak their feet in a pool of warm water. They will leave this world only with worry in their hearts as they wonder who will watch after their child now that they are sick and leaving.
I'm lucky! I was able to upgrade. I left my painful shoes at the door and took up new ones that only give me some discomfort once in awhile. ;) At the end of the day, when all are asleep...I take off my shoes and rub my aching feet. I put them back on in the morning, wearing them with pride. How can I not smile with Matthew by my side! (totally didn't mean for that to rhyme...that's how if flowed in my mind!)
How are your shoes fitting? Could you stand for them to be a little tighter? I'm sure most of you could. Go volunteer at a hospital, homeless shelter or nursing home. Help someone by enabling them to take off their shoes and breathe a sigh of relief - just for a moment. It will mean the world to them!
Thursday, December 2, 2010
Sunday, November 14, 2010
Labor of love
Mom-nesia = the blessed occurrence that has to happen before we are willing to go through the trials of pregnancy and labor all over again. Had it not, there would be many more single child households out there!
May I see a show of hands of how many women upon receiving stitches to their hoo-ha said I immediately want to do that again. Mmmm-kay. Now raise your hand if you were one of the c-section mommies that upon your first sneeze after your pain meds wore off, you were game to go again in 9 months. I see you flinching from the recollection of that feeling... ;) I've been through both and neither time did I raise my hand! Honestly, I kept my hands bound and taped to my sides until my rugrats slept through the night! :P
But yes, eventually my memory of pain, vomiting and stitches (both times) were chipped away and replaced with warm fuzzies. I look back now and think - that wasn't so bad. Just like the pregnant lady that has to endure 6 months of torturous morning sickness only to say that she now misses being pregnant. (that was not me by the way - I'm one of the weird ones that loved my growing belly...and growing bust line too)
Turns out that happens in other ways of life too.
Today marks 10 months of kidney function for my son. Ten months since his transplant from Marie. Ten months since everything we knew and were familiar with flew out the window! And now, it is starting to get a little hazy.
Don't get me wrong - I could still set up PD, I know the process for getting him on hemo and I still cringe thinking of dressing changes on Mondays. But the rawness is leaving. The hole in my heart is mending. The feeling of being overwhelmed isn't with me every day anymore. And if need be (though with God's grace it won't come to that) I could do this again. Talking about Matthew only there. ;)
We've done it before and we've survived it. We were all made better people because of it. And if an 8 month old can endure being strapped into a crib for three hours - then surely an 8 year old can...well...with the help of the Gamecube or PlayStation. Not that I have to worry about that at all since I just know this kidney has a 20 year life span with the way it's kept going through the hard knocks! :)
I'm so proud of my little fighter and everything he has gone through. With the best of smiles on his face :) Happy 10 months lovebug!
May I see a show of hands of how many women upon receiving stitches to their hoo-ha said I immediately want to do that again. Mmmm-kay. Now raise your hand if you were one of the c-section mommies that upon your first sneeze after your pain meds wore off, you were game to go again in 9 months. I see you flinching from the recollection of that feeling... ;) I've been through both and neither time did I raise my hand! Honestly, I kept my hands bound and taped to my sides until my rugrats slept through the night! :P
But yes, eventually my memory of pain, vomiting and stitches (both times) were chipped away and replaced with warm fuzzies. I look back now and think - that wasn't so bad. Just like the pregnant lady that has to endure 6 months of torturous morning sickness only to say that she now misses being pregnant. (that was not me by the way - I'm one of the weird ones that loved my growing belly...and growing bust line too)
Turns out that happens in other ways of life too.
Today marks 10 months of kidney function for my son. Ten months since his transplant from Marie. Ten months since everything we knew and were familiar with flew out the window! And now, it is starting to get a little hazy.
Don't get me wrong - I could still set up PD, I know the process for getting him on hemo and I still cringe thinking of dressing changes on Mondays. But the rawness is leaving. The hole in my heart is mending. The feeling of being overwhelmed isn't with me every day anymore. And if need be (though with God's grace it won't come to that) I could do this again.
We've done it before and we've survived it. We were all made better people because of it. And if an 8 month old can endure being strapped into a crib for three hours - then surely an 8 year old can...well...with the help of the Gamecube or PlayStation. Not that I have to worry about that at all since I just know this kidney has a 20 year life span with the way it's kept going through the hard knocks! :)
I'm so proud of my little fighter and everything he has gone through. With the best of smiles on his face :) Happy 10 months lovebug!
Monday, November 1, 2010
what a treat
Halloween - the day everything started happening last year. The day I noticed dangerous signs in my son.
We had gone over to my in-laws house to trick or treat with Woody the cowboy and a frog. The night ended with my husband and I taking turns listening to our son sleep in the night and making sure he was still breathing. The day before, Matthew had been to Egleston for dialysis. We were supposed to trick or treat there on the transplant floor. He came in costume and we got lots of oohs and ahhs. :)I took a picture with my phone of my little frog. That was the only picture we got of him in costume. He never got to go trick or treating on the transplant floor after his hemo session. He didn't get to go the following night on Halloween either.
An hour into dialysis, Matthew's catheter began to "suck" - meaning air was being pulled instead of blood. When that happens your blood clots. A clot during dialysis can be deadly. They flushed huge amounts of saline into his lines to keep the flow going...but it still clotted off.
Our dialysis session lasted 6 hours - but in that time we only had one hour of dialysis. Matthew was severely overloaded with fluid and was having problems breathing on Halloween night. They scheduled a permacath replacement for Monday morning. Twenty four hours after the new dialysis catheter was placed we were told our son had congestive heart failure. The fluid in his lungs was causing the breathing issues. We stayed at the hospital for 10 days - having a 4 hour dialysis run every one of those days except one off day and we added numerous blood pressure meds. I was given the news my son was fading and we had to find a donor - quick!
I've had many "worst days" - that ranks number one. I've been told my son wouldn't survive fetal surgeries, birth, dialysis, surgery when his potassium was critically high...but in all of those I had hope. All of the things we were doing, we were doing it to help him out. Now what was "helping" him (dialysis) was slowly killing him. It was much too harsh on his tiny body. The nephs told me at the beginning that the chance of him making it to one year on hemodialysis at his size and age were practically non-existent. He made it 13 months. :) But he wouldn't have made it much longer I'm sure...
Last year was HARD at this time. Very, very hard. Being a mom is hard, being a caretaker for someone that is sick is hard, being an advocate is hard - being all three at once - its indescribable.
This Halloween I took a racecar driver and a stink bug out to trick or treat. Both were running up driveways carrying pumpkins and making adults everywhere laugh out loud at there antics. Matthew would "treat, treat" whenever a door was opened and happily shout "appy Howie ween". He stayed up late and we divided candy. We watched Wow Wow Wubbzy's Halloween episode on tv and just laughed and cuddled, going back and forth between couch and floor depending on where big brother was. (Matthew can't get enough of his big brother!)
Halloween is now my new favorite holiday because it will now symbolize nothing but treats for our family. Good memories, sweet moments and the cutest little boys having so much fun together. Yep - surely beats last year...hands down!
We had gone over to my in-laws house to trick or treat with Woody the cowboy and a frog. The night ended with my husband and I taking turns listening to our son sleep in the night and making sure he was still breathing. The day before, Matthew had been to Egleston for dialysis. We were supposed to trick or treat there on the transplant floor. He came in costume and we got lots of oohs and ahhs. :)I took a picture with my phone of my little frog. That was the only picture we got of him in costume. He never got to go trick or treating on the transplant floor after his hemo session. He didn't get to go the following night on Halloween either.
An hour into dialysis, Matthew's catheter began to "suck" - meaning air was being pulled instead of blood. When that happens your blood clots. A clot during dialysis can be deadly. They flushed huge amounts of saline into his lines to keep the flow going...but it still clotted off.
Our dialysis session lasted 6 hours - but in that time we only had one hour of dialysis. Matthew was severely overloaded with fluid and was having problems breathing on Halloween night. They scheduled a permacath replacement for Monday morning. Twenty four hours after the new dialysis catheter was placed we were told our son had congestive heart failure. The fluid in his lungs was causing the breathing issues. We stayed at the hospital for 10 days - having a 4 hour dialysis run every one of those days except one off day and we added numerous blood pressure meds. I was given the news my son was fading and we had to find a donor - quick!
I've had many "worst days" - that ranks number one. I've been told my son wouldn't survive fetal surgeries, birth, dialysis, surgery when his potassium was critically high...but in all of those I had hope. All of the things we were doing, we were doing it to help him out. Now what was "helping" him (dialysis) was slowly killing him. It was much too harsh on his tiny body. The nephs told me at the beginning that the chance of him making it to one year on hemodialysis at his size and age were practically non-existent. He made it 13 months. :) But he wouldn't have made it much longer I'm sure...
Last year was HARD at this time. Very, very hard. Being a mom is hard, being a caretaker for someone that is sick is hard, being an advocate is hard - being all three at once - its indescribable.
This Halloween I took a racecar driver and a stink bug out to trick or treat. Both were running up driveways carrying pumpkins and making adults everywhere laugh out loud at there antics. Matthew would "treat, treat" whenever a door was opened and happily shout "appy Howie ween". He stayed up late and we divided candy. We watched Wow Wow Wubbzy's Halloween episode on tv and just laughed and cuddled, going back and forth between couch and floor depending on where big brother was. (Matthew can't get enough of his big brother!)
Halloween is now my new favorite holiday because it will now symbolize nothing but treats for our family. Good memories, sweet moments and the cutest little boys having so much fun together. Yep - surely beats last year...hands down!
Tuesday, September 28, 2010
Choosing the hard way
I chose the hard way. How much simpler life would be if I never had to worry about PD, hemo, surgeries, medicines and the like. We would have traveled, explored and spent more time together as a family. But something would have been missing. If I had agreed to terminate my pregnancy...if I had a do not resuscitate order in the NICU...if we didn't have someone step forward to donate her kidney - life would be different.
We chose the hard way, the parents of our renal warriors. Seeing our child in pain, waiting out numerous surgeries and procedures, staying vigilant by his hospital bedside and praying. We have fought for our child's right to take his first breath. The hard way comes with unbelievable pain, anxiety and fear.
The hard way also is lined with hope, love and trust, but sometimes it is hard to see.
When your spouse dies, you are referred to as a widow/widower. When both sets of parents die, a child is called an orphan. There is no name for parents when their child dies - there are no words that can describe it. A friend of mine has lost her son to a long battle of end stage kidney disease. I have no words.
She chose the hard way and has now falling on harder times. But in between she had many beautiful moments. Moments she will cherish her whole lifetime until she can be with him again. And when she is, he will be whole and perfect for the first time.
Sweet Aidan flies into heaven lifted by his mother's love and holding on to his father's kidney. Their love will grow for their son as he now becomes their protector, watching over them.
His way of saying thank you for believing in me, for fighting for me and for loving me SO much to let me go home.
Please take a moment and say a special prayer for this grieving family: pray that the hole in their hearts mend. Give them the strength to carry on these next few days and for the many years following. Bless them with the comfort of knowing they did ALL they could do and to NEVER doubt that. Help them to see happier times and to hold onto Aidan's love.
We chose the hard way, the parents of our renal warriors. Seeing our child in pain, waiting out numerous surgeries and procedures, staying vigilant by his hospital bedside and praying. We have fought for our child's right to take his first breath. The hard way comes with unbelievable pain, anxiety and fear.
The hard way also is lined with hope, love and trust, but sometimes it is hard to see.
When your spouse dies, you are referred to as a widow/widower. When both sets of parents die, a child is called an orphan. There is no name for parents when their child dies - there are no words that can describe it. A friend of mine has lost her son to a long battle of end stage kidney disease. I have no words.
She chose the hard way and has now falling on harder times. But in between she had many beautiful moments. Moments she will cherish her whole lifetime until she can be with him again. And when she is, he will be whole and perfect for the first time.
Sweet Aidan flies into heaven lifted by his mother's love and holding on to his father's kidney. Their love will grow for their son as he now becomes their protector, watching over them.
His way of saying thank you for believing in me, for fighting for me and for loving me SO much to let me go home.
Please take a moment and say a special prayer for this grieving family: pray that the hole in their hearts mend. Give them the strength to carry on these next few days and for the many years following. Bless them with the comfort of knowing they did ALL they could do and to NEVER doubt that. Help them to see happier times and to hold onto Aidan's love.
Sunday, September 26, 2010
And the Earth keeps turning
Have you ever had one of those moments when life stands still? Perhaps as you exchange vows with your soulmate. Gaze at the flickering heartbeat during an ultrasound. Or raise your glass to toast your grandparents 60th wedding anniversary. What wonderful times, times we wish we could slow down and savor as they speed past us leaving an imprint in our souls.
Then comes the times that are slow, and sometimes quite painful. Where your world stops, but everyone else keeps going. I have felt that numerous times - I think we all have. Either experiencing a fear so great or a grief so pure. A time when you wonder as you look out of the hospital window, unto the street below, is anyone as sad or as frightened as I am? Is that couple arguing about a missed turn a few streets backs? Perhaps that family is on their way to drop by at a friend's house? Maybe that guy is heading home from a late shift at the office. Their world is still spinning. Life goes on.
When Matthew has been facing a rough patch, I log on to the computer to update my friends. Opening my email account I would see funny jokes that had been forwarded, the "gifts" sent to my facebook account for whichever game I was hooked on at the time, and all the newsletters/recaps from the forums I was a part of. I would sit in silence, knowing that the life was continuing for others while my son's life hung in the balance. I could see it enfolding in front of me...and yet I was numb to it.
I didn't give a damn about getting a can of fuel for my farm or what the priest and rabbi said upon entering the bar...I just wanted my son to be better and out of danger.
I guess if you have never been there, it is hard to put yourself in that place. It sucks to the point...that I just can't explain in words...only a weary sigh. But I am asking you to put yourself in that place right now.
A very special kidney warrior is fighting for his life tonight. He has been through so much and has always come out a champion. Now he needs us to rally behind him and lift him up. Pray for healing, strength, peace and wisdom for sweet Aidan, his family and his doctors. The power of pray can move mountains - we just need it to move a dialysis catheter into place to give this sweet boy a chance.
As the Earth turns, I ask you to turn your face towards heaven and pray.
http://aidansfight.com/
Then comes the times that are slow, and sometimes quite painful. Where your world stops, but everyone else keeps going. I have felt that numerous times - I think we all have. Either experiencing a fear so great or a grief so pure. A time when you wonder as you look out of the hospital window, unto the street below, is anyone as sad or as frightened as I am? Is that couple arguing about a missed turn a few streets backs? Perhaps that family is on their way to drop by at a friend's house? Maybe that guy is heading home from a late shift at the office. Their world is still spinning. Life goes on.
When Matthew has been facing a rough patch, I log on to the computer to update my friends. Opening my email account I would see funny jokes that had been forwarded, the "gifts" sent to my facebook account for whichever game I was hooked on at the time, and all the newsletters/recaps from the forums I was a part of. I would sit in silence, knowing that the life was continuing for others while my son's life hung in the balance. I could see it enfolding in front of me...and yet I was numb to it.
I didn't give a damn about getting a can of fuel for my farm or what the priest and rabbi said upon entering the bar...I just wanted my son to be better and out of danger.
I guess if you have never been there, it is hard to put yourself in that place. It sucks to the point...that I just can't explain in words...only a weary sigh. But I am asking you to put yourself in that place right now.
A very special kidney warrior is fighting for his life tonight. He has been through so much and has always come out a champion. Now he needs us to rally behind him and lift him up. Pray for healing, strength, peace and wisdom for sweet Aidan, his family and his doctors. The power of pray can move mountains - we just need it to move a dialysis catheter into place to give this sweet boy a chance.
As the Earth turns, I ask you to turn your face towards heaven and pray.
http://aidansfight.com/
Tuesday, September 21, 2010
The best medicine
Our little family has been through lots of medicines and supplements - especially in the past nearly three years (when I found out I was pregnant). Some work wonders right away, others take some time for the body to adjust to it. A lucky few have no side effects (or no side effects worth mentioning at least) and others....AAAAHHHHHH! Do you want to know what my favorite is?
A smile. From a stranger in the hospital halls, a doctor that is just as frustrated as I am, my children (their smiles light up my entire life) or even an old photograph of simpler times with smiling friends. Smiles are therapeutic.
William - 8 months old as Charlie Brown
Have you ever had the thought that things just possibly can't get any worse? Ask that to the parents that buried their child last week; the parents in the PICU today watching the clock and hoping they are granted another hour to hear their child's soft breath. Maybe this is just a sensitive subject for me in general. I've invited myself to my own pity party a couple of times for my own son's situation. Luckily, I just make an appearance - see the party is really a drag - and then get the Hell out of there! I don't know...even though I know life has been rough for my son sometimes...I just can't shake the feeling of "wow - how lucky are we!"
Matthew's last surgery and hospitalization before transplant
Two of our kidney friends are having a rough time at the moment. It affects me...maybe more than it should. But I can't help but put myself in their shoes...knowing that one day...it could easily be my son. I think making the hospital rounds so often in a young life, you do feel a connection and an empathy that perhaps others do not. I know I didn't - until it happened to me. When William was sick with a high fever and vomiting at 10 months old - I just thought the world needed to stop for us on the way to the ER. Now I see I overreacted a wee bit. ;) But it was my child in distress. Now when that happens, I offer up a little praise that it's just a virus and will run its course, happy to know it isn't something scary!
And when I find myself getting overwhelmed - I smile to myself. I might look a bit goofy to someone passing by, but I'm pretty goofy looking naturally already. ;) I have smiled while rocking a screaming, hungry and mighty angry 2 month old that was waiting for his turn in the OR, because it was one step closer to our goal of transplant. I've smiled through the vaccines of my first born, knowing all the pain he would be kept from in the future with just a couple of tiny pricks. I've smiled as my husband has boarded a cutter in the coast guard during our first year of marriage, because I knew eventually he would come back. I've smiled as I have visited my grandparents' graves, because now they are truly at peace.
Yes, smiling is often underrated. It helps. It heals. It doesn't take away all of the pain, but it acts as a rainbow during the storm. The promise that one day, the smile will be real...even if you think it won't. Just smile.
A smile. From a stranger in the hospital halls, a doctor that is just as frustrated as I am, my children (their smiles light up my entire life) or even an old photograph of simpler times with smiling friends. Smiles are therapeutic.
William - 8 months old as Charlie Brown
Have you ever had the thought that things just possibly can't get any worse? Ask that to the parents that buried their child last week; the parents in the PICU today watching the clock and hoping they are granted another hour to hear their child's soft breath. Maybe this is just a sensitive subject for me in general. I've invited myself to my own pity party a couple of times for my own son's situation. Luckily, I just make an appearance - see the party is really a drag - and then get the Hell out of there! I don't know...even though I know life has been rough for my son sometimes...I just can't shake the feeling of "wow - how lucky are we!"
Matthew's last surgery and hospitalization before transplant
Two of our kidney friends are having a rough time at the moment. It affects me...maybe more than it should. But I can't help but put myself in their shoes...knowing that one day...it could easily be my son. I think making the hospital rounds so often in a young life, you do feel a connection and an empathy that perhaps others do not. I know I didn't - until it happened to me. When William was sick with a high fever and vomiting at 10 months old - I just thought the world needed to stop for us on the way to the ER. Now I see I overreacted a wee bit. ;) But it was my child in distress. Now when that happens, I offer up a little praise that it's just a virus and will run its course, happy to know it isn't something scary!
And when I find myself getting overwhelmed - I smile to myself. I might look a bit goofy to someone passing by, but I'm pretty goofy looking naturally already. ;) I have smiled while rocking a screaming, hungry and mighty angry 2 month old that was waiting for his turn in the OR, because it was one step closer to our goal of transplant. I've smiled through the vaccines of my first born, knowing all the pain he would be kept from in the future with just a couple of tiny pricks. I've smiled as my husband has boarded a cutter in the coast guard during our first year of marriage, because I knew eventually he would come back. I've smiled as I have visited my grandparents' graves, because now they are truly at peace.
Yes, smiling is often underrated. It helps. It heals. It doesn't take away all of the pain, but it acts as a rainbow during the storm. The promise that one day, the smile will be real...even if you think it won't. Just smile.
Wednesday, September 1, 2010
Sharing what I know
Change. Change is natural - the phases of the moon, the turn of the season, the transformation from caterpillar to butterfly. Change is sought after - job promotions, bigger houses, a new baby. Change is resisted - moving, divorce and diets. Change can be all three as was the case in my life, the mother of a special baby boy that just happened to be fighting end stage kidney disease when he was born 2 months early.
Anything you do for 18 months, becomes normal to you and when it is time to change things - it gets a little hairy! I was used to administering 14 meds a day. I was accustomed to hemodialysis three times a week. It was a daily routine to wash lots of laundry due to lots of vomiting. My son wasn't able to get in the bath tub, we couldn't get his hemo catheter wet. His means of bathing was via a sponge bath, no splashing in the tub. So even though I despised this life for our family, I was comfortable with it...it was all I knew.
My sweet Matthew's life changed on January 14, 2010, when a hero voluntarily gave up one of her kidneys to be placed into my son. I can still vividly recall the dizzying array of emotions I went through that day. The hope, excitement, anxiety and gratitude. For the first time in my son's life - he would have a normal, working kidney. And it went to work right away! His congestive heart failure cleared up. His rickets slowly corrected. All four of his blood pressure medicines were weaned off to where he was finally on NONE. Diet restrictions - gone. Hemodialysis catheter - removed. Bath time - splish, splash! He had a spark to him, he had life in him!
This transformation was awesome to watch, but it was also intimidating to see. I went from watching his electrolytes (potassium, calcium, sodium) like a hawk to analyzing every tenth of a point increase in his creatinine. Before transplant, I knew those numbers would be bad. OK, so it went from 7.1 to 7.3 - no big deal! But the minute transplant was over...WAIT!!! His creatinine jumped from .4 to .5!! This "new normal" took some getting used to for a bit.
I'm sure many of you have heard the saying that life in the NICU/PICU/ICU is similar to a roller coaster, with many ups and downs along the way. You believe going into transplant, that everything will be be downhill from now on. But if you are honest with yourself, you are trading one set of problems for another set. A set I gladly embraced with arms wide open to get my one year old son off of a machine for three days a week! But needless to say, we've had highs and we've had lows.
The worry is still there - I don't think it will ever go away actually. Now I worry about side effects, kidney toxicity and rejection. I wonder if this cold will stay a cold or develop into something more ominous. Is that a fever from cutting molars, or a fever that he is showing a sign of rejection? Did I push enough fluids yesterday when it was so warm out, don't want to throw off that BUN!
I think reality set in when Matthew was hospitalized for a simple "cold" from someone else that turned into viral meningitis and encephalitis. He went from playing with his brother that morning, with a barely there fever of 99 and a runny nose to going into shock...all in four hours time. His lips were blue, his arms and legs were cold, he would not respond to his name and didn't even move when they put in an IV. That's when his doctors told me nothing ordinary will ever be ordinary for my son. He's right, Matthew has always been extraordinary actually. :)
That was just one lesson that I learned the hard way. I've learned a lot - from Matthew, from the transplant team, from other mother's that have traveled this very same journey. It's a close knit family. I've handed my son over to a surgeon 20 times, it never gets easier. I've picked out clothes for him to be buried in twice, I still get emotional when I see those outfits. This "club" we are in is a great support team, I wish we never had to have a new member in it.
But if you are a new member, I would like to share what I know with you in the hopes that you don't have to go in blind. Knowledge is a precious commodity that we can't leave checked at the door to the OR. I do not know everything (my husband is probably rejoicing that I am admitting that). Circumstances are different since people are different. No two people will react the same way, but you will find a lot of similarities. I truly hope they help.
- you are your child's advocate. Do not go in looking for friends from the transplant team. Yes, that does come eventually, but you are there for your child first and foremost.
- double check everything! From the meds the nurses bring in, to the solution hanging on the IV pole, to the labs they are drawing for that day. My son would hoard potassium in his body, much like mine hoards potato chips! Even though he was in-patient to receive a new dialysis catheter, the nurse hung potassium chloride unto his IV stand. Needless to say, that was GONE!
- research everything. Whenever Matthew was put on a new medicine, which was often, I would look it up and see side effects, interactions, dosages and the like. Four days post transplant, Matthew's prograf level (anti-rejection drug) climbed to a dangerously toxic level of 42. He was hallucinating, frantic and eventually had to be bound and strapped to the bed. It was all due to an interaction with the blood pressure medicine they had him on. It caused the prograf to stay in his system longer and just keep building. I told them of this interaction. They took him off and the next day, his levels were down in the 20's.
- never be afraid to speak your mind. Yes, the doctors know all about this disease, that surgery and every kind of procedure...but you know your child! If something doesn't feel right - say something. If they are taking things too far for your little one - tell them to back off (in a nice way of course). You do not want to gain an enemy, you want an ally. One that grows to respect you and your opinions.
- accept help! During transplant, after transplant, when transplant is a distant memory...accept help. To be a caretaker is physically and emotionally draining. Add on the "normal" needs of raising a child and family - wow! Your friends may refer to you as superwoman, but you do not have her ability to go that long without sleep, food or just quiet time to decompress. Help comes in many ways: from someone taking care of your dog, to bringing over food for the family, or to sitting with you at the hospital.
- learn the motto: expect the worse, hope for the best and be happy when it is somewhere in between. Nothing is perfect in the medical field. A success is that you walked out of the hospital! Learn to appreciate the little things. Understand that things happen for a reason. And come to accept that just because you feel NOW is the best time for something...it might not be. But that time will come, and it will be worth the wait!
- trust your instinct. I knew something was off with Matthew when he "just had a cold". The transplant coordinator was telling me to bring him in the next day if he wasn't feeling like himself by then or if his fever had increased overnight. If I had waited even an hour longer...I honestly don't know if Matthew would be here. If you look like an overly dramatic mom that makes mountains out of molehills - so what! Anyone that has been there, will completely understand and those that haven't - if they could walk a mile in our shoes right!
- look at your child, not at the machines. If something is alarming and nurses are running every which way to get to your room, only to find a happy child sitting up and clapping while watching Mickey Mouse cartoons... I think we can safely say we have a faulty lead! If the machine is showing good things, but your child's eyes suddenly roll back in his head and he turns white - hit that nurse button.
- rejection isn't the end of the world. HA! You wouldn't have been able to tell me that a month ago. At my son's 6 month biopsy, they found rejection. Needless to say I was devastated. I was already planning ahead to see when Christmas was and if it would fall on one of our hemo days. But they found it early and we fought it hard. One month later - gone! Rejection is normal. It is exactly what the body is supposed to do. We are trying to counteract mother nature. It's a long, hard battle. Some you will win, some she will win. But hang on to hope that it all turns out for the best.
- live your life! It is so easy to retreat to your safe little cocoon to keep all the nastiness away. And yes, you will have to do that at first or if you run into any road bumps that cause you to go up on anti-rejection meds. But this transplant was a gift, from a friend, a family member, an angel with a sign donor card. Honor that gift. Celebrate it! Rejoice in all the second chances your family has just received. For my son's kidney-versay, (his transplant anniversary) we are celebrating in Disney World. The happiest place on Earth, because we are the happiest people on Earth. All thanks to one woman that said yes to being an organ donor.
And one last thing...have you signed your donor card yet?
Anything you do for 18 months, becomes normal to you and when it is time to change things - it gets a little hairy! I was used to administering 14 meds a day. I was accustomed to hemodialysis three times a week. It was a daily routine to wash lots of laundry due to lots of vomiting. My son wasn't able to get in the bath tub, we couldn't get his hemo catheter wet. His means of bathing was via a sponge bath, no splashing in the tub. So even though I despised this life for our family, I was comfortable with it...it was all I knew.
My sweet Matthew's life changed on January 14, 2010, when a hero voluntarily gave up one of her kidneys to be placed into my son. I can still vividly recall the dizzying array of emotions I went through that day. The hope, excitement, anxiety and gratitude. For the first time in my son's life - he would have a normal, working kidney. And it went to work right away! His congestive heart failure cleared up. His rickets slowly corrected. All four of his blood pressure medicines were weaned off to where he was finally on NONE. Diet restrictions - gone. Hemodialysis catheter - removed. Bath time - splish, splash! He had a spark to him, he had life in him!
This transformation was awesome to watch, but it was also intimidating to see. I went from watching his electrolytes (potassium, calcium, sodium) like a hawk to analyzing every tenth of a point increase in his creatinine. Before transplant, I knew those numbers would be bad. OK, so it went from 7.1 to 7.3 - no big deal! But the minute transplant was over...WAIT!!! His creatinine jumped from .4 to .5!! This "new normal" took some getting used to for a bit.
I'm sure many of you have heard the saying that life in the NICU/PICU/ICU is similar to a roller coaster, with many ups and downs along the way. You believe going into transplant, that everything will be be downhill from now on. But if you are honest with yourself, you are trading one set of problems for another set. A set I gladly embraced with arms wide open to get my one year old son off of a machine for three days a week! But needless to say, we've had highs and we've had lows.
The worry is still there - I don't think it will ever go away actually. Now I worry about side effects, kidney toxicity and rejection. I wonder if this cold will stay a cold or develop into something more ominous. Is that a fever from cutting molars, or a fever that he is showing a sign of rejection? Did I push enough fluids yesterday when it was so warm out, don't want to throw off that BUN!
I think reality set in when Matthew was hospitalized for a simple "cold" from someone else that turned into viral meningitis and encephalitis. He went from playing with his brother that morning, with a barely there fever of 99 and a runny nose to going into shock...all in four hours time. His lips were blue, his arms and legs were cold, he would not respond to his name and didn't even move when they put in an IV. That's when his doctors told me nothing ordinary will ever be ordinary for my son. He's right, Matthew has always been extraordinary actually. :)
That was just one lesson that I learned the hard way. I've learned a lot - from Matthew, from the transplant team, from other mother's that have traveled this very same journey. It's a close knit family. I've handed my son over to a surgeon 20 times, it never gets easier. I've picked out clothes for him to be buried in twice, I still get emotional when I see those outfits. This "club" we are in is a great support team, I wish we never had to have a new member in it.
But if you are a new member, I would like to share what I know with you in the hopes that you don't have to go in blind. Knowledge is a precious commodity that we can't leave checked at the door to the OR. I do not know everything (my husband is probably rejoicing that I am admitting that). Circumstances are different since people are different. No two people will react the same way, but you will find a lot of similarities. I truly hope they help.
- you are your child's advocate. Do not go in looking for friends from the transplant team. Yes, that does come eventually, but you are there for your child first and foremost.
- double check everything! From the meds the nurses bring in, to the solution hanging on the IV pole, to the labs they are drawing for that day. My son would hoard potassium in his body, much like mine hoards potato chips! Even though he was in-patient to receive a new dialysis catheter, the nurse hung potassium chloride unto his IV stand. Needless to say, that was GONE!
- research everything. Whenever Matthew was put on a new medicine, which was often, I would look it up and see side effects, interactions, dosages and the like. Four days post transplant, Matthew's prograf level (anti-rejection drug) climbed to a dangerously toxic level of 42. He was hallucinating, frantic and eventually had to be bound and strapped to the bed. It was all due to an interaction with the blood pressure medicine they had him on. It caused the prograf to stay in his system longer and just keep building. I told them of this interaction. They took him off and the next day, his levels were down in the 20's.
- never be afraid to speak your mind. Yes, the doctors know all about this disease, that surgery and every kind of procedure...but you know your child! If something doesn't feel right - say something. If they are taking things too far for your little one - tell them to back off (in a nice way of course). You do not want to gain an enemy, you want an ally. One that grows to respect you and your opinions.
- accept help! During transplant, after transplant, when transplant is a distant memory...accept help. To be a caretaker is physically and emotionally draining. Add on the "normal" needs of raising a child and family - wow! Your friends may refer to you as superwoman, but you do not have her ability to go that long without sleep, food or just quiet time to decompress. Help comes in many ways: from someone taking care of your dog, to bringing over food for the family, or to sitting with you at the hospital.
- learn the motto: expect the worse, hope for the best and be happy when it is somewhere in between. Nothing is perfect in the medical field. A success is that you walked out of the hospital! Learn to appreciate the little things. Understand that things happen for a reason. And come to accept that just because you feel NOW is the best time for something...it might not be. But that time will come, and it will be worth the wait!
- trust your instinct. I knew something was off with Matthew when he "just had a cold". The transplant coordinator was telling me to bring him in the next day if he wasn't feeling like himself by then or if his fever had increased overnight. If I had waited even an hour longer...I honestly don't know if Matthew would be here. If you look like an overly dramatic mom that makes mountains out of molehills - so what! Anyone that has been there, will completely understand and those that haven't - if they could walk a mile in our shoes right!
- look at your child, not at the machines. If something is alarming and nurses are running every which way to get to your room, only to find a happy child sitting up and clapping while watching Mickey Mouse cartoons... I think we can safely say we have a faulty lead! If the machine is showing good things, but your child's eyes suddenly roll back in his head and he turns white - hit that nurse button.
- rejection isn't the end of the world. HA! You wouldn't have been able to tell me that a month ago. At my son's 6 month biopsy, they found rejection. Needless to say I was devastated. I was already planning ahead to see when Christmas was and if it would fall on one of our hemo days. But they found it early and we fought it hard. One month later - gone! Rejection is normal. It is exactly what the body is supposed to do. We are trying to counteract mother nature. It's a long, hard battle. Some you will win, some she will win. But hang on to hope that it all turns out for the best.
- live your life! It is so easy to retreat to your safe little cocoon to keep all the nastiness away. And yes, you will have to do that at first or if you run into any road bumps that cause you to go up on anti-rejection meds. But this transplant was a gift, from a friend, a family member, an angel with a sign donor card. Honor that gift. Celebrate it! Rejoice in all the second chances your family has just received. For my son's kidney-versay, (his transplant anniversary) we are celebrating in Disney World. The happiest place on Earth, because we are the happiest people on Earth. All thanks to one woman that said yes to being an organ donor.
And one last thing...have you signed your donor card yet?
Saturday, August 28, 2010
Overdue
Well, I can't title it update since it's been well over a month since the last time I put anything in here. Whoopsies! What can I say except my standard pathetic excuse of "it's been busy"! Just after I posted on here, Matthew had his 6 month biopsy. The results came back that he was in rejection. Needless to say, mommy had a wee bit of a melt down and we had to go to the hospital daily for IV steriod therapy. THAT made him pleasant let me tell you! Turning two (which is always a fun age) combined with "roid rage" - oh it was a blast! ;) But it did the trick! Our repeat biopsy was one day before my 31st (mumbling obscenities under my breath) birthday. I got a WONDERFUL present of knowing that for the first time, both of my boys were as healthy as they will ever be! Yes - a great birthday!!
Shortly after, Ian had to leave to go clean up BP's mistakes. He travels from New Orleans to Hopedale to Venice daily to oversee the clean up and make sure it is being done right and not just "swept under the rug" or sand dunes as it may be! We miss him, but as William says, someone has to help the sick fish. ;) Sweet little boy! At least this will be experience on his resume. He would love to get into the EPA next, once promotion in the GA DNR becomes stagnant. Daddy will be home just in time for Halloween - so that will make trick or treating much sweeter. :) Especially since Matthew didn't get to go last year when his blood pressure was acting up and he was in patient for a new hemo line.
We just got word that Ian's grandfather's cancer has returned. He will be going to Emory next week for a consult and see what (if anything) can be done. At least he will be at Emory. I do trust them better than most hospitals. I'm praying that Ian gets home in time to see his grandfather before he gets too sick. Ian idolizes him. So, we are asking for prayers that he pulls through once again.
Well, my alarm (Matthew) just went off - so back on duty I go. Sorry for the short re-cap. Like I said - always busy.
I'll get better - promise. Have a wonderful weekend!
Shortly after, Ian had to leave to go clean up BP's mistakes. He travels from New Orleans to Hopedale to Venice daily to oversee the clean up and make sure it is being done right and not just "swept under the rug" or sand dunes as it may be! We miss him, but as William says, someone has to help the sick fish. ;) Sweet little boy! At least this will be experience on his resume. He would love to get into the EPA next, once promotion in the GA DNR becomes stagnant. Daddy will be home just in time for Halloween - so that will make trick or treating much sweeter. :) Especially since Matthew didn't get to go last year when his blood pressure was acting up and he was in patient for a new hemo line.
We just got word that Ian's grandfather's cancer has returned. He will be going to Emory next week for a consult and see what (if anything) can be done. At least he will be at Emory. I do trust them better than most hospitals. I'm praying that Ian gets home in time to see his grandfather before he gets too sick. Ian idolizes him. So, we are asking for prayers that he pulls through once again.
Well, my alarm (Matthew) just went off - so back on duty I go. Sorry for the short re-cap. Like I said - always busy.
I'll get better - promise. Have a wonderful weekend!
Monday, July 12, 2010
one person
I've been asked recently how do I keep going with all of Matthew's needs, William's needs, the dog, the house, myself when Ian is gone for extended periods of time. Well, in all honesty, it's not much of a difference in care when he is here.
Now that sounds bad actually. My husband does an astronomical amount of work around here, especially in helping with the house! I got one of the good ones I say. I cook - he cleans, I wash clothes - he folds them, I tidy the clutter - he vacuums the floor. See! Gotta a GOOD one! :)
He's also a huge help with the kids, both kids. If I need to go to the grocery store, he handles the fort. If I'm exhausted, moody (it happens monthly you know) or am driving to the hospital the next morning, Ian handles all of the night feedings and diaper changes. (He goes through THREE diapers at night people!) But during the day, the kids are on me. 99% of Matthew is on me too.
When you have a child that has specific things that need to be done, either specific measurements, specific times, specific methods...it's just easier when one person handles it all. When both of us are home on the weekend, it's never a halvsies situation. We've done that before and it's been an issue. I would bolus Matthew 30 mls and then Ian would come right behind me not 20 seconds later giving him another 30mils - and here comes the puke! Fortunately we have never done it, but I've known other parents to double up on medicine, unknowingly giving the same dose twice. But we have been late giving medicines before - thinking the other one had done it. Now it is just set.
It's a lot of responsibility for one person, but even more for two people. Ian knows how to do it all if I am gone for whatever reason. He has no issues with it...though he is out of practice and if you are ever out with me to dinner or something - we WILL get interrupted by repeated phone calls. ;)
What does it mean to have Ian home. It means sanity (any mom of a 2 yr old and 4 yr old will tell you that!). It means companionship (gets mighty lonely when the boys are in bed and the house is quiet). It means camaraderie (taking turns who gets to wake up at 6:30am with Matthew or 8am with William). It means love (I think that one is pretty self explanatory). It means being able to vent and laugh, to clap and to be held, to worry with and to be reassured.
I miss him.
Even for this short time...I miss him even when he is gone just for a weekend! But he has his duties and I have mine. I am mommy. It all comes with the territory, even the demands that weren't necessarily in the "What to Expect" books.
I'm just SO thankful this didn't happen when we were at hemo three times a week! Whew!
Now that sounds bad actually. My husband does an astronomical amount of work around here, especially in helping with the house! I got one of the good ones I say. I cook - he cleans, I wash clothes - he folds them, I tidy the clutter - he vacuums the floor. See! Gotta a GOOD one! :)
He's also a huge help with the kids, both kids. If I need to go to the grocery store, he handles the fort. If I'm exhausted, moody (it happens monthly you know) or am driving to the hospital the next morning, Ian handles all of the night feedings and diaper changes. (He goes through THREE diapers at night people!) But during the day, the kids are on me. 99% of Matthew is on me too.
When you have a child that has specific things that need to be done, either specific measurements, specific times, specific methods...it's just easier when one person handles it all. When both of us are home on the weekend, it's never a halvsies situation. We've done that before and it's been an issue. I would bolus Matthew 30 mls and then Ian would come right behind me not 20 seconds later giving him another 30mils - and here comes the puke! Fortunately we have never done it, but I've known other parents to double up on medicine, unknowingly giving the same dose twice. But we have been late giving medicines before - thinking the other one had done it. Now it is just set.
It's a lot of responsibility for one person, but even more for two people. Ian knows how to do it all if I am gone for whatever reason. He has no issues with it...though he is out of practice and if you are ever out with me to dinner or something - we WILL get interrupted by repeated phone calls. ;)
What does it mean to have Ian home. It means sanity (any mom of a 2 yr old and 4 yr old will tell you that!). It means companionship (gets mighty lonely when the boys are in bed and the house is quiet). It means camaraderie (taking turns who gets to wake up at 6:30am with Matthew or 8am with William). It means love (I think that one is pretty self explanatory). It means being able to vent and laugh, to clap and to be held, to worry with and to be reassured.
I miss him.
Even for this short time...I miss him even when he is gone just for a weekend! But he has his duties and I have mine. I am mommy. It all comes with the territory, even the demands that weren't necessarily in the "What to Expect" books.I'm just SO thankful this didn't happen when we were at hemo three times a week! Whew!
Thursday, July 8, 2010
9 lives and outfits
This time two years ago, I was finally breathing a sigh of relief. We had received a call at 6am saying we needed to come down to the NICU right away, Matthew had taken a turn. Just a couple days prior we had started getting the paper work ready to begin our PD training to go home, so this call kind of came out of left field. I quickly called Ian's parents to come get William (as they live 5 miles from us) and ran to the car.
Matthew, the week before he got sick.
Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.
Here he is back in my arms that afternoon:
Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.
Matthew, the week before he got sick.
Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.
Here he is back in my arms that afternoon:
Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.
Wednesday, July 7, 2010
Escape
I am proudly announcing that I have seen the new Twilight movie 3 times in one week. :) Yes, I love it and yes I will be 31 in less than a month. It's not so much the movies, although they are entertaining and the effects are getting better with each movie (in my opinion), I'm in love with the books.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter.
And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube.
I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were.
I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter.
And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube.
I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were. I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.
Monday, June 14, 2010
Savannah
I'm back! Oh man was that needed!! I truly enjoyed myself - every minute. I left the house at the same time my mother left with my youngest. We pulled out onto the main road together, me turning towards interstate 75, her towards interstate 575...and I cried. I just didn't see how I would like being away from my boys and didn't understand why I had even agreed to do it.
Then I met up with my honey at the gas station. He ran over to my car and pumped my gas. Then he gave a kiss - a REAL GOOD kiss. ;) Yep - I'm alright now...let's go! We followed each other down, luckily missing the headache of Atlanta traffic. We were passing through Atlanta at 2:30pm on a Friday and only slowed down to about 30 for about 10 miles...which if you are familiar with Atlanta traffic, you know that is NOTHING. It took about 30 minutes to go to 10 miles instead of it taking 2 hrs like it can!
We get checked into our hotel (courtesy of the USCG - thank you!) and head out for a local hang out that my hubby frequents for lunch with the other guys. We walked the 8 blocks together holding hands and taking in the scenery. Not really caring that it was 95 degrees at 7pm. Just happy to be together and having an adult conversation. Afterwards, we took a leisurely walk around some of the squares and residential sections. My favorite being near the John the Baptist Cathedral (see pic).
The next day I slept in until 9am, took a 40 minute shower with NO interruptions and then met my handsome man in uniform for lunch! After walking back to the hotel, I just played on facebook, watched nonsense tv programs and curled up in bed with a magazine. It was HEAVEN!!! My honey came home around 4pm and off to a romantic sea-side dinner at Tybee Island. The food was OK, but the company was fantastic! Then we headed down to walk to Riverfront. Honestly, I found Savannah gorgeous...but their riverwalk was less than desirable. Maybe Wilmington spoiled me, but they really need to take some pointers from the old Coast Guard City to the north of them!
I didn't even take any pictures, because it honestly was nothing to take a picture of! Like I said Wilmington's is MUCH better! And man it made me and Ian both very nostalgic for the Cape Fear.
Ian and I have said we would do this once a year - a trip down to Savannah together. It helped rejuvenate us, rekindle the romance (and the spice). ;) I cried harder pulling away from the MSU where my husband was working than I did when I left home. It made me realize how much I really love him despite all the drama that gets in the way at home. He is my soul mate, the man I was made for, and the father I would give 10 more babies to - if I had a nanny. :)
Then I met up with my honey at the gas station. He ran over to my car and pumped my gas. Then he gave a kiss - a REAL GOOD kiss. ;) Yep - I'm alright now...let's go! We followed each other down, luckily missing the headache of Atlanta traffic. We were passing through Atlanta at 2:30pm on a Friday and only slowed down to about 30 for about 10 miles...which if you are familiar with Atlanta traffic, you know that is NOTHING. It took about 30 minutes to go to 10 miles instead of it taking 2 hrs like it can!
We get checked into our hotel (courtesy of the USCG - thank you!) and head out for a local hang out that my hubby frequents for lunch with the other guys. We walked the 8 blocks together holding hands and taking in the scenery. Not really caring that it was 95 degrees at 7pm. Just happy to be together and having an adult conversation. Afterwards, we took a leisurely walk around some of the squares and residential sections. My favorite being near the John the Baptist Cathedral (see pic).
The next day I slept in until 9am, took a 40 minute shower with NO interruptions and then met my handsome man in uniform for lunch! After walking back to the hotel, I just played on facebook, watched nonsense tv programs and curled up in bed with a magazine. It was HEAVEN!!! My honey came home around 4pm and off to a romantic sea-side dinner at Tybee Island. The food was OK, but the company was fantastic! Then we headed down to walk to Riverfront. Honestly, I found Savannah gorgeous...but their riverwalk was less than desirable. Maybe Wilmington spoiled me, but they really need to take some pointers from the old Coast Guard City to the north of them!
I didn't even take any pictures, because it honestly was nothing to take a picture of! Like I said Wilmington's is MUCH better! And man it made me and Ian both very nostalgic for the Cape Fear.
Ian and I have said we would do this once a year - a trip down to Savannah together. It helped rejuvenate us, rekindle the romance (and the spice). ;) I cried harder pulling away from the MSU where my husband was working than I did when I left home. It made me realize how much I really love him despite all the drama that gets in the way at home. He is my soul mate, the man I was made for, and the father I would give 10 more babies to - if I had a nanny. :)
Wednesday, June 9, 2010
Tuesday, June 8, 2010
Guilt trip?
So, my husband and I have the opportunity to go out of town for the weekend without our kids. When I say "go out of town", I mean I will accompany him on his reserve duty down in Savannah. No amusement parks, no villas, no spas. Just 2 evenings spent together as a couple without kids, because he will be working during the day. I'm getting a little flack for this. Not much and not enough to phase me in any shape, but enough to go - "really??".
The longest my husband and I have been away from our kids is 19 hrs. The farthest we've actually gone is one hour away. We've been "gone" twice. Once we left in the evening and returned before lunch for our 5 year wedding anniversary at our wedding night hotel. The other was a day in Chattanooga for my 30th birthday last year.
I honestly do NOT like being away from my kids. I'm kind of a control freak like that. :)Matthew has a very structured day and William is a homebody.
From October 09 til April 10, I didn't leave the house unless we went to the hospital. That was it. I couldn't risk getting sick and bringing it home to one of my kids. Couldn't risk missing transplant or "killing" the kidney with a simple cold virus that is NEVER simple in an immunosuppressed child. I have worried since February 18, 2008 when our lives changed forever. I can count on one hand how many times I have slept through the night since Matthew was born. And if I'm going to be honest - they were because I completely and totally drugged myself to sleep. The count is 4. Four nights in total of 733. Not because my kids aren't great sleepers - they really are! But because of the way my son eats...through a tube in his stomach. Milk products only last so long when exposed to room temperature you know. Gotta get up and change it out twice every night.
I put my kids first, before me, before my husband, before my house. Some don't agree with that and others do. I don't do that for anyone, but my kids and myself. I have my reasons. Whenever someone would tell me, make time for yourself or make time for you as a couple. I would honestly think - how selfish. If I go out it is after my kids have had dinner and are either getting ready for bed, or are already asleep. It just makes me feel like a bad mom to go out and "have fun" while they are awake and staying home. But now, I'm about to do just that.
And I don't feel guilty about it.
I might once I get ready to leave, or when I drop the boys off with their grandparents...but really - I need this. My husband and I both NEED this. Do you know how much strain comes onto a marriage when you have a sick child? When you spend weeks at a time at the hospital away from each other? When you have to find extra money to put aside to pay for medications when the state insurance program runs out? When dad has to choose between going to work to keep a job that pays the bills or going to the OR waiting room with me? Have you ever had to "catergorize" your son's surgeries into low grade and high grade to see if dad truly needs to be there in the event your son doesn't wake up? Have you gone to sleep with a pager in your hand? Do you have four different doctors, two nurses, two therapists and a transplant coordinator taped to your refrigerator, but know the numbers by heart?
I love my life, I love my sons, and I love my husband. I am doing this for all of us. I need to recharge my battery. Ian will be staying another week in Savannah when I get back. This is hard to do by yourself. All the meds, all the diapers, all the boluses, and the nighttime duties too. I've learned so much because of this wonderful and sometimes frightening journey. Now I'm learning to step back. To trust others and let it be known that it doesn't have to be on me 100% of the time. Matthew is at his healthiest he has ever been and I'm learning to trust that. I'm still used to the "old" days where he could spin out of control in a moment's notice due to his congestive heart failure, his 7.8 creatinine or his 160/110 blood pressure readings. But now his days consist of playtime and temper tantrums (could really do without those!) and things even seem (dare I say) normal! This is our chance before the surgeries start again. Upwards of 5 additional surgeries making a grand total of 25 in his little lifetime. Yes, I need a recharge, some down time.
I'm sending my supermom cape to the dry cleaners for the weekend. I'll pick it up and wear it with pride when I get back. It will be shiny and new and ready to face all the challenges and trials. It just needs a little TLC too.
The longest my husband and I have been away from our kids is 19 hrs. The farthest we've actually gone is one hour away. We've been "gone" twice. Once we left in the evening and returned before lunch for our 5 year wedding anniversary at our wedding night hotel. The other was a day in Chattanooga for my 30th birthday last year.
I honestly do NOT like being away from my kids. I'm kind of a control freak like that. :)Matthew has a very structured day and William is a homebody.
From October 09 til April 10, I didn't leave the house unless we went to the hospital. That was it. I couldn't risk getting sick and bringing it home to one of my kids. Couldn't risk missing transplant or "killing" the kidney with a simple cold virus that is NEVER simple in an immunosuppressed child. I have worried since February 18, 2008 when our lives changed forever. I can count on one hand how many times I have slept through the night since Matthew was born. And if I'm going to be honest - they were because I completely and totally drugged myself to sleep. The count is 4. Four nights in total of 733. Not because my kids aren't great sleepers - they really are! But because of the way my son eats...through a tube in his stomach. Milk products only last so long when exposed to room temperature you know. Gotta get up and change it out twice every night.
I put my kids first, before me, before my husband, before my house. Some don't agree with that and others do. I don't do that for anyone, but my kids and myself. I have my reasons. Whenever someone would tell me, make time for yourself or make time for you as a couple. I would honestly think - how selfish. If I go out it is after my kids have had dinner and are either getting ready for bed, or are already asleep. It just makes me feel like a bad mom to go out and "have fun" while they are awake and staying home. But now, I'm about to do just that.
And I don't feel guilty about it.
I might once I get ready to leave, or when I drop the boys off with their grandparents...but really - I need this. My husband and I both NEED this. Do you know how much strain comes onto a marriage when you have a sick child? When you spend weeks at a time at the hospital away from each other? When you have to find extra money to put aside to pay for medications when the state insurance program runs out? When dad has to choose between going to work to keep a job that pays the bills or going to the OR waiting room with me? Have you ever had to "catergorize" your son's surgeries into low grade and high grade to see if dad truly needs to be there in the event your son doesn't wake up? Have you gone to sleep with a pager in your hand? Do you have four different doctors, two nurses, two therapists and a transplant coordinator taped to your refrigerator, but know the numbers by heart?
I love my life, I love my sons, and I love my husband. I am doing this for all of us. I need to recharge my battery. Ian will be staying another week in Savannah when I get back. This is hard to do by yourself. All the meds, all the diapers, all the boluses, and the nighttime duties too. I've learned so much because of this wonderful and sometimes frightening journey. Now I'm learning to step back. To trust others and let it be known that it doesn't have to be on me 100% of the time. Matthew is at his healthiest he has ever been and I'm learning to trust that. I'm still used to the "old" days where he could spin out of control in a moment's notice due to his congestive heart failure, his 7.8 creatinine or his 160/110 blood pressure readings. But now his days consist of playtime and temper tantrums (could really do without those!) and things even seem (dare I say) normal! This is our chance before the surgeries start again. Upwards of 5 additional surgeries making a grand total of 25 in his little lifetime. Yes, I need a recharge, some down time.
I'm sending my supermom cape to the dry cleaners for the weekend. I'll pick it up and wear it with pride when I get back. It will be shiny and new and ready to face all the challenges and trials. It just needs a little TLC too.
Thursday, June 3, 2010
Time flies
This 4D ultrasound was taken just two days before Matthew was born. It was taken about 9 weeks before I was really supposed to see him. Surprise!
Two years ago, Ian and I got up at 4:30 am and got ready to head out to Northside Hospital in Atlanta. We had a 6am appointment time, even though they don't open until 8am normally. (yeah, me and my MFM were tight like that) ;) He usually only worked at the Atlanta office on Monday's and Friday's, but it was a Tuesday and baby boy needed some fluid (even though I had just had some on the Friday before - he was a little fish). So Dr Gomez came down and opened up just for us.
I've described infusions before - they are not fun, but they are SO rewarding. I just LOVED seeing Matthew go from no fluid to LOTS of fluid. You could almost hear the chuckles and see the smiles of happiness on the ultrasound. How he would reach out his hand or kick with his feet to the needle where the fluid was pouring in from. You could see his little hands waving back and forth to make bubbles. You could watch the shunts he had pulled out at various times post-surgeries float up and around my uterus...sigh.
That morning Dr Gomez was playing his Rolling Stones cd. Matthew was enjoying it and "dancing" away. Whenever we need to do something close to him or the umbilical cord, we had to turn down the music so he would be still. :) And sure enough, about 5 seconds after the music stopped - so would he. It was like he got quiet to listen to see where it had gone. :)
For our early morning wake up call, Dr Gomez ordered us breakfast while I was on the monitor for 30 minutes. I was having contractions. I had them a lot the last week of the infusions. Of course I had three infusions in 7 days - so that might have had something to do with it too. ;) More meds to stop them, yummy breakfast, apologies to Dr Gomez as he called Northside satellite office in Alpharetta. It was already 8:15 and he obviously wasn't there... Infusion took a lot longer to do once Matthew as past the 28 week. He used up his fluid so much faster after having received his steriod shots. They said that was how it was supposed to be as he was practicing his breathing more frequently. He was bigger, there was less room to place the needle without causing damage to the cord, the baby or the placenta. So instead of it taking an hour, it would sometimes take upwards to two. Especially that last when I was having contractions that pushed the needle out - causing them to re-sterilize my tummy, get a new needle and find a new place to begin again.
Lisa, our favorite ultrasound tech, sprung me loose after receiving Viki's blessing that the contractions were slowing down. Down the hallway to a room I hadn't been in yet, I'd been in most! It was the FUN room. The 4D ultrasound room. Lisa spent half an hour giving us picture after picture of our little guy. He was gorgeous. Looked like a doll. I was SO excited to meet him. Little did I know it would only be 48 hours away.
But that's another story...
Thank you to the Maternal Fetal Medicine department at Northside Atlanta. Without your steady hands, your genuine concern and your willingness to put up with my bad jokes (and my laughing and shaking belly while you are trying to operate) Matthew's birth was filled with hope. The hope that pushed me to keep pushing for him.
Friday, May 28, 2010
Confession
So, some of my online friends that have not "met" me have asked to get to know me a little better. They are passing around a "confessions" post of sorts and I thought I would hop aboard. It will finally be a little light reading compared to my last...oh...20 posts. ;) So, here goes nothing!
You have things you tell others, like how much weight you would like to loose, but never how much you actually weigh. This is not the time to tell your weight! It is the time to tell your other fun secrets about your guilty pleasures. I'm sure there is one movie, one song or one book that you have not told others you are into. Spill it!
A list of my "guilty pleasures" and/or weird stuff about me. :)
OK - let's just get the biggee out of the way. I'm a Vampire Diaries junkie. I read the books back in 7th grade (totally gave my age away with that one) and was hooked. No, the tv series is nothing like the book, but I like it for what it is. And just in case you were wondering - I'm pro-Damon. :)
my favorite lunch to eat by myself - white bread with an American cheese slice on it...topped with bbq potato chips and sweet pickles. And yes, I only eat those when I'm NOT pregnant. ;) Hey - don't knock it til you tried it!
I read smutty romance novels when I'm stressed...which is a lot! I don't want to think through a book when life has filled by brain to capacity. My favorite writer is Kathleen Woodiwiss. She's not trashy, but still thorough. ;)
While the boys are napping, I watch baby birth stories. And sometimes I even cry at the actual birth. I don't know those people, but I know what they are feeling and it brings me back to the births of mine.
How I read the newspaper - grocery store ads, coupons, comics, sports and then the actual news stories. I feel I have to prepare myself for the doom and gloom of the world before reading about it.
I don't like cake. Never have, never will. I'll eat some to be nice, but I really can't stand it. I would prefer donuts for my birthday. Or a pile of reese peanut butter cups - yeah!
No one can talk to me if I am watching my football on tv. My daddy raised me right! At the age of 5, I was sitting at the games cheering my heart out for a 2 - 9 team. Now they are MUCH better...and I still cheer like that. Go Jackets!
I have been bitten by the texting bug and I hate myself for it. It is so impersonal and utter crap, yet I can't stop. It's fine at the hospital while Matthew is sleeping or to get a big message shared with several people. But to ask how your day is...just talk in the phone - not type in the phone.
I still have shirts from high school that I wear. I just refuse to pay $35 dollars for a piece of cotton with sleeves attached to it. I get clothes for my birthday and Christmas. Those are my new outfits for the year. Every once in while I shop the clearance rack. I'm a fan of shop-looking, not shop-buying. Don't get me on shoes - I loathe shopping for those!
Ok, so that's me. The real me. What about you?
Yeah - this is from our first summer in NC. NO string bikini's nowadays! ;)
You have things you tell others, like how much weight you would like to loose, but never how much you actually weigh. This is not the time to tell your weight! It is the time to tell your other fun secrets about your guilty pleasures. I'm sure there is one movie, one song or one book that you have not told others you are into. Spill it!
A list of my "guilty pleasures" and/or weird stuff about me. :)
OK - let's just get the biggee out of the way. I'm a Vampire Diaries junkie. I read the books back in 7th grade (totally gave my age away with that one) and was hooked. No, the tv series is nothing like the book, but I like it for what it is. And just in case you were wondering - I'm pro-Damon. :)
my favorite lunch to eat by myself - white bread with an American cheese slice on it...topped with bbq potato chips and sweet pickles. And yes, I only eat those when I'm NOT pregnant. ;) Hey - don't knock it til you tried it!
I read smutty romance novels when I'm stressed...which is a lot! I don't want to think through a book when life has filled by brain to capacity. My favorite writer is Kathleen Woodiwiss. She's not trashy, but still thorough. ;)
While the boys are napping, I watch baby birth stories. And sometimes I even cry at the actual birth. I don't know those people, but I know what they are feeling and it brings me back to the births of mine.
How I read the newspaper - grocery store ads, coupons, comics, sports and then the actual news stories. I feel I have to prepare myself for the doom and gloom of the world before reading about it.
I don't like cake. Never have, never will. I'll eat some to be nice, but I really can't stand it. I would prefer donuts for my birthday. Or a pile of reese peanut butter cups - yeah!
No one can talk to me if I am watching my football on tv. My daddy raised me right! At the age of 5, I was sitting at the games cheering my heart out for a 2 - 9 team. Now they are MUCH better...and I still cheer like that. Go Jackets!
I have been bitten by the texting bug and I hate myself for it. It is so impersonal and utter crap, yet I can't stop. It's fine at the hospital while Matthew is sleeping or to get a big message shared with several people. But to ask how your day is...just talk in the phone - not type in the phone.
I still have shirts from high school that I wear. I just refuse to pay $35 dollars for a piece of cotton with sleeves attached to it. I get clothes for my birthday and Christmas. Those are my new outfits for the year. Every once in while I shop the clearance rack. I'm a fan of shop-looking, not shop-buying. Don't get me on shoes - I loathe shopping for those!
Ok, so that's me. The real me. What about you?
Yeah - this is from our first summer in NC. NO string bikini's nowadays! ;)
Monday, May 10, 2010
Oldie but goodie
Yes, MANY special/medical needs moms swear by this writing. It completely sums up our way of life perfectly and helps others to understand. We don't want pity, we don't want awards, we don't want recognition...we just want the best for our children.
So - without further ado, I give you Holland. :) It's a GREAT place to be!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
So - without further ado, I give you Holland. :) It's a GREAT place to be!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Sunday, May 9, 2010
Mother's day
Yeah I know - I'm a slacker. Sorry. Two "healthy" kids is a lot more to keep up with than one sick baby that took three naps and another child that would take three hour naps. Yes, things have changed! First, I want to thank Marie for allowing me to be a mom to two healthy boys. Without her, this mother's day would be very different. I would still be a mother of two, but I might not have been able to hold and hug on two sweet boys like I did today. Thank you for making that possible.
Did you know that I'm actually not a "fan" of mother's day? Just like I'm not really a fan of Valentine's day. Oh yes, I've COMPLETELY enjoyed my day today! It was wonderful and I'm ready for another day like it...tomorrow? :) Guess not... A day that didn't start until 11:30am when I finally got out of bed after breakfast, snuggles, presents and just relaxing and reading a book. I've been "off duty" today - no meds, no tube feeds, no grilling cheese sandwiches, no diapers, no reminding to wash hands - no worries...only the "good" stuff. :) The best present was the wildflower William picked for me when I came back home from shopping this afternoon.
But there are many moms that are not enjoying this day. Moms whose baby boy is off in Iraq. Moms whose little girl passed of cancer. Moms that have been separated from their children due to car accidents, disease, drugs, disasters and custody battles. Moms whose arms are empty and their hearts are full. Moms who never met their little one and cling to an ultrasound picture. Moms that know it is unnatural to bury your child, when they are supposed to bury you. Ladies that are moms in their heart, but due to health, society or culture can't become the "mom" you and I would recognize on the street.
Moms are everywhere - teachers, nurses, counselors, girl/boy scout leaders, bakers, secretaries and ministers. Being a mom is not biological. Being a mom is not a right. Being a mom is a reward. A precious gift that many take for granted. Just because you have five children, that does not make you any more "mom" than someone with one. Just because your child has special needs or is gifted in music does not make you more "mom" than the stereotypical soccer mom in a minivan.
A mom by heart, because not all moms give birth, have a fierce love for their children. A protectiveness that is so powerful it is hard to describe the depth some mothers would go to for their children. All mothers wish to keep their child from pain, rejection, fear and just general unpleasantness. Being a mother is giving yourself the smallest slice of birthday cake in favor of your family getting their fill of sweet moments. Being a mother means not caring if you are up all hours of the night with a newborn, it's wonderful just rocking them in stillness with no interruptions. A mother knows what you are up to, because chances are she tried to do it herself 30 years ago. Moms smile at the gifts of both dandelions and worms, because they were given by her child that sees joy in everything. Moms kiss scraped knees, rub sour tummies and come armed with a can of magic away monster spray.
But some moms put their child on an airplane to bootcamp. Some mothers place tiny bundles into a grave. Somewhere a mother is fighting over where they can possibly stick a new IV, instead of please eat your broccoli. A first time mom is sitting in disbelief that her child, the one she has prayed for her entire 9 years of marriage, as a congenital birth defect that is not compatible with life, instead of wondering what to wear to her baby shower. A mom has been told the tumor has grown, instead of being told her child is in the 75% percentile for height. Another mom is letting her "baby" of 12 years go and deciding to give life saving parts of her child to other children in need, instead of sharing hand me down clothes. Another mom was just told her third try at IVF has failed once again, instead of figuring out how to install a carseat. Somewhere a mom has run to the phone for two years every time it has rang with hope in her heart that they finally found him, instead of refusing to pick it up incase it is a telemarketer.
So today, I'm thinking of the moms that are not recognized. The heartbroken, the weary, the strained and the rejected. And yet they are strong, amazing, resilient and awe-inspiring (though you could never tell them that!). Today is for you. Today is for your memories, your future. Today is all about you and your child(ren). Happy Mother's day, in the shameful event that no one told you that today.
Did you know that I'm actually not a "fan" of mother's day? Just like I'm not really a fan of Valentine's day. Oh yes, I've COMPLETELY enjoyed my day today! It was wonderful and I'm ready for another day like it...tomorrow? :) Guess not... A day that didn't start until 11:30am when I finally got out of bed after breakfast, snuggles, presents and just relaxing and reading a book. I've been "off duty" today - no meds, no tube feeds, no grilling cheese sandwiches, no diapers, no reminding to wash hands - no worries...only the "good" stuff. :) The best present was the wildflower William picked for me when I came back home from shopping this afternoon.
But there are many moms that are not enjoying this day. Moms whose baby boy is off in Iraq. Moms whose little girl passed of cancer. Moms that have been separated from their children due to car accidents, disease, drugs, disasters and custody battles. Moms whose arms are empty and their hearts are full. Moms who never met their little one and cling to an ultrasound picture. Moms that know it is unnatural to bury your child, when they are supposed to bury you. Ladies that are moms in their heart, but due to health, society or culture can't become the "mom" you and I would recognize on the street.
Moms are everywhere - teachers, nurses, counselors, girl/boy scout leaders, bakers, secretaries and ministers. Being a mom is not biological. Being a mom is not a right. Being a mom is a reward. A precious gift that many take for granted. Just because you have five children, that does not make you any more "mom" than someone with one. Just because your child has special needs or is gifted in music does not make you more "mom" than the stereotypical soccer mom in a minivan.
A mom by heart, because not all moms give birth, have a fierce love for their children. A protectiveness that is so powerful it is hard to describe the depth some mothers would go to for their children. All mothers wish to keep their child from pain, rejection, fear and just general unpleasantness. Being a mother is giving yourself the smallest slice of birthday cake in favor of your family getting their fill of sweet moments. Being a mother means not caring if you are up all hours of the night with a newborn, it's wonderful just rocking them in stillness with no interruptions. A mother knows what you are up to, because chances are she tried to do it herself 30 years ago. Moms smile at the gifts of both dandelions and worms, because they were given by her child that sees joy in everything. Moms kiss scraped knees, rub sour tummies and come armed with a can of magic away monster spray.
But some moms put their child on an airplane to bootcamp. Some mothers place tiny bundles into a grave. Somewhere a mother is fighting over where they can possibly stick a new IV, instead of please eat your broccoli. A first time mom is sitting in disbelief that her child, the one she has prayed for her entire 9 years of marriage, as a congenital birth defect that is not compatible with life, instead of wondering what to wear to her baby shower. A mom has been told the tumor has grown, instead of being told her child is in the 75% percentile for height. Another mom is letting her "baby" of 12 years go and deciding to give life saving parts of her child to other children in need, instead of sharing hand me down clothes. Another mom was just told her third try at IVF has failed once again, instead of figuring out how to install a carseat. Somewhere a mom has run to the phone for two years every time it has rang with hope in her heart that they finally found him, instead of refusing to pick it up incase it is a telemarketer.
So today, I'm thinking of the moms that are not recognized. The heartbroken, the weary, the strained and the rejected. And yet they are strong, amazing, resilient and awe-inspiring (though you could never tell them that!). Today is for you. Today is for your memories, your future. Today is all about you and your child(ren). Happy Mother's day, in the shameful event that no one told you that today.
Thursday, April 15, 2010
3 months
So - it's been three months and one day since THE day that saved my son's life. What has changed? Everything!
* We go to the hospital ONCE a week...not twice, not three times - ONCE. That's huge!
* Matthew is interested in food! Before, just to touch it (or sometimes SEE it) would cause him to spew. Oh yes, those were fun days... Anyway - now he is making progress of licking, tasting and taking small bites of things like apples, peanut butter crackers, potato chips, bread, cheezits and cheetos. I didn't say they were all healthy did I? I'm just going on what we got at the moment. :) He also allows me to put in small amounts of formula in his mouth through a syringe without spitting it back out! HUGE people! If he would only DRINK from a cup instead of spilling out the water to play with it...I think we would be even further on this one. ;)
* Medicines Matthew has come off since transplant - calcitriol, kayexlate, Aranesp, Epogen, ferrous sulfate, ferric pyrophosphate citrate, sodium chloride, calcium carbonate, Clonidine patch, Norvasc, Labetolol, Minoxidil (Rogaine), sodium phosphate and Valcyte.
* Medicines that have lowered in amount - ditropan (weaning him off - bladder med), and predinsone (steroids)
* As of today, he is on FIVE medicines. FIVE! And in exactly three months - it will be knocked down to FOUR. FOUR!!!! Amazing!
* Matthew now has the "feel goods to be up to no good". :) He likes to rearrange my kitchen cabinet with were the canned veggies and soups are. He really likes to make beautiful artwork on my wall under my dining room bay window. And his favorite is push buttons on the remote until everything stops working and mommy has to call daddy for technology help! A close second would be turning his feed pump on and off during nap time. The little stinker has grown some and can reach more than I think he can!
* Most importantly, the last three months have helped us to realize what a blessing it is to have two healthy little boys in our lives. It has deepened our gratitude towards Marie and all she did for us by simply saying "I'd like to be tested". Amazing how ONE little sentence of five little words can really impact someone's life.
We are looking forward to a kidney reunion of sorts when Marie and her husband come to our house soon. Afterall - my son has her kidney - I can't deny her rights to visit. :) I sincerely hope we are able to do this often. So Marie can see the outcome of her gift in our lives - her gift of life. :)
* We go to the hospital ONCE a week...not twice, not three times - ONCE. That's huge!
* Matthew is interested in food! Before, just to touch it (or sometimes SEE it) would cause him to spew. Oh yes, those were fun days... Anyway - now he is making progress of licking, tasting and taking small bites of things like apples, peanut butter crackers, potato chips, bread, cheezits and cheetos. I didn't say they were all healthy did I? I'm just going on what we got at the moment. :) He also allows me to put in small amounts of formula in his mouth through a syringe without spitting it back out! HUGE people! If he would only DRINK from a cup instead of spilling out the water to play with it...I think we would be even further on this one. ;)
* Medicines Matthew has come off since transplant - calcitriol, kayexlate, Aranesp, Epogen, ferrous sulfate, ferric pyrophosphate citrate, sodium chloride, calcium carbonate, Clonidine patch, Norvasc, Labetolol, Minoxidil (Rogaine), sodium phosphate and Valcyte.
* Medicines that have lowered in amount - ditropan (weaning him off - bladder med), and predinsone (steroids)
* As of today, he is on FIVE medicines. FIVE! And in exactly three months - it will be knocked down to FOUR. FOUR!!!! Amazing!
* Matthew now has the "feel goods to be up to no good". :) He likes to rearrange my kitchen cabinet with were the canned veggies and soups are. He really likes to make beautiful artwork on my wall under my dining room bay window. And his favorite is push buttons on the remote until everything stops working and mommy has to call daddy for technology help! A close second would be turning his feed pump on and off during nap time. The little stinker has grown some and can reach more than I think he can!
* Most importantly, the last three months have helped us to realize what a blessing it is to have two healthy little boys in our lives. It has deepened our gratitude towards Marie and all she did for us by simply saying "I'd like to be tested". Amazing how ONE little sentence of five little words can really impact someone's life.
We are looking forward to a kidney reunion of sorts when Marie and her husband come to our house soon. Afterall - my son has her kidney - I can't deny her rights to visit. :) I sincerely hope we are able to do this often. So Marie can see the outcome of her gift in our lives - her gift of life. :)
Thursday, April 1, 2010
Donor awareness month
This is the flag that flies at Children's Healthcare of Atlanta during every transplant surgery. This is the flag that flew on January 14th of this year for my son's kidney transplant. I still get choked up seeing this photo. It takes me right back to the moment, the moment life was going into my son on an operating table. All because someone was selfless enough to give the gift of life.
This April, I beg you to search your heart and talk it over with family and loved ones. Please consider being an organ donor. Research it, find out how to register for your state by visiting this site (http://www.donatelife.net/) and give someone a second chance. If everyone had a loved one that's life was dependent on a list...we'd all be registered. Please help them. They are people (daughters, brothers, grandmothers and best friends). They are not numbers.
Give them hope - give them life. Register.
Friday, March 19, 2010
typical Friday
Typical around here is pretty much atypical for anyone else, but our typical has changed over the last two months - and for the better!
Friday - pretransplant:
Turn off feeds at 5am regardless if Matthew finished or not. Wake up again at 6am to get self ready, pack diaper bag and give baby a mini-bath from the 1- 3 puking sessions overnight. Throw the crib linens in the washer as I run out the door at 6:45am. Take two hours to drive 64 miles, add and extra hour if it is raining. (WARNING - metro Atlanta drivers forget basic driving 101 if any precipitation is within 50 miles of the city, they also forget when the sun is in the sky, when someone is changing a tire on the side of the road, the wind blows or it is dark outside)
Pull into Egleston parking garage around 8:45am. Change Matthew's puke clothes, hoping it is just on the bib...dangit! (Yeah, God DOES have a sense of humor - He thought it would be fun to give Matthew motion sickness like his daddy on top of the all the pukiness from kidney disease - I'm not smiling...) Say hi to all of our "people" at the hospital (security, environmental services and food services). Wave to fishies in the aquarium. Head up to 6th floor. Quick hi to Parrish at registration and get access badge permission to head back to hemo unit. Sign in and wave to our friends on first shift. (this is when we would get Activase injections for clots if necessary - which it was - a LOT!)
Head to family bathroom to change diaper and give medicines (all four blood pressure meds, sodium supplement, iron supplement, vitamin D supplement, reflux med, calcium supplement and tylenol for cramping, and yes - those were just his morning meds). Head across the hall to family kitchen. Turn on Disney channel (LOVED when they put a tv in there last summer!!). Warm up Matthew's bottle of decanted kidney friendly formula. (was decanted the night before for two hours from 10:30 pm to 12:30am, just in time for the 1am feed change) Say hi and wave to all of friendly nurses, techs, liver docs (they did rounds at 9am and always came in for coffee prior), social workers and child life specialists. Bolus feed of 60 ccs over an hours.
Someone from dialysis comes in around 10am to get us for our session. Head on back with a baby ready for his first nap of the day. Get undressed and weighed, (Matthew not me) take temp and get blood pressure. Laugh at how crazy high blood pressure is and shrug it off. Set UF goal for 1000, knowing he will start to cramp at 850 and only allow them to go to 900. Put on mask and sanitize hands with cleaning foam. Hold Matthew's attention for hook up and labs. Matthew tries his hardest to get every syringe he can to "help" the nurse. Keep sterile field away from his feet - it won't be sterile much longer... Set machine to dialyize. HOPE and PRAY it works. Begin three hour countdown of worry.
Roll Matthew onto his tummy and coerce him to take a much needed nap. Sigh as alarms beep, 9 year olds play xbox with volume set at 100 and nurses laugh and call to each other from across the unit. Matthew is out. Wait until the next blood pressure comes to make sure all is alright and he is not bottoming out or getting too high. OK, I have 15 minutes to pee and eat before it is time for the next blood pressure measurement. RUN! POTTY! SWALLOW! RUN! Next blood pressure squeezes comes around...and wakes up Matthew. YAY, a 20 minute nap. :) Get the gamecube tv from one of the techs. Put in a movie for Matthew.
At noon, heat up bottle of 60 cc's. Give another dose of blood pressure meds and anti-nausea medicine. Nurses administer Aranesp (yes, human plasma from the blood - NOT to be used in those that have congestive heart failure...) and ferric pyrophosphate citrate (which would make Matthew vomit if they gave it before I put food in his tummy). Matthew now starts cramping and is getting overtired while being restless at the same time. This is when mommy goes goofy and does everything in her power to make him laugh for the remaining hour. (or to hold him down as still as possible while the lines start to "suck" at his blood, pulling air and causing all sorts of commotion on the machine - the chanting "please don't clot, please don't clot" was used a lot here!) THE alarm sounds - one of the best sounds in the world. FREEDOM until Monday!
So then it is time to amuse Matthew again while we disengage him from the machine, heparinize and flush lines and clamp him off. Back to the scales, get a temp, measure blood pressure (for the 14th time in three hours) and get dressed. Wave to everyone vigorously saying bye-bye and blowing kisses (again, Matthew not me). Finish up last bit of bolus before getting in the car. It is now 1:30pm.
Head for home and pick up William at 3pm. Get home roughly around 3:30pm, try to get Matthew to take a catnap before his 4:30pm bolus...fail! Check blood pressure to see if we need a "bump up" dose. Get dinner started up and check in with hubby to see his arrival time. Balance dinner with bolus "shots" of 60cc's for an hour. Bolus feed and dinner are both done at 5:30pm. Eat, watch Matthew gag as us eating...very appetizing. Playtime/family for 30 minutes. At 6:45pm, get Matthew's bed time meds ready (see morning list) and set up feed pump for nightly feeds. Get boys to bed - start all over every Monday, Wednesday and Friday (adding LOTS of screaming, skin being peeled off and even higher blood pressure on Monday's for bandage changes).
Yeah- that was fun!
Friday- post transplant:
Turn off feeds when feed is complete and go back to bed, until Matthew starts jumping and squealing around 8am. Give morning meds at 8:30am (reflux medicine, bladder spasm med, lactobacillus, and steroid) 9am, feed 120cc bolus of UN-decanted, pop the top off the can, high calorie formula. :) Lasts about an hour and fifteen minutes. At 10am, give both anti-rejection meds.
PLAY!
Noon meds - Valcyte (on for only 4 more weeks) and Bactril (only four more months) and bladder spasm med. Followed by bolus feed of 120ccs. Then on to glorious NAPTIME! YAY (That is kind of mommy's favorite..especially since William is all done with naps now!)
This is followed by more playing and wreaking havoc of my house, while looking cute while doing so... yes, he is saying Uh Oh in the picture.
120 cc bolus at 4:30pm, mommy makes dinner, daddy comes home. Family time and BATH time!! Splishing, splashing, hooting and hollering commence. :)
Night meds, night feeds, night-night. To be continued the next day. Man, it's nice having a working kidney in there so we don't have to work as much on all the Stuff...just play. :) Thanks Marie. :)
Friday - pretransplant:
Turn off feeds at 5am regardless if Matthew finished or not. Wake up again at 6am to get self ready, pack diaper bag and give baby a mini-bath from the 1- 3 puking sessions overnight. Throw the crib linens in the washer as I run out the door at 6:45am. Take two hours to drive 64 miles, add and extra hour if it is raining. (WARNING - metro Atlanta drivers forget basic driving 101 if any precipitation is within 50 miles of the city, they also forget when the sun is in the sky, when someone is changing a tire on the side of the road, the wind blows or it is dark outside)
Pull into Egleston parking garage around 8:45am. Change Matthew's puke clothes, hoping it is just on the bib...dangit! (Yeah, God DOES have a sense of humor - He thought it would be fun to give Matthew motion sickness like his daddy on top of the all the pukiness from kidney disease - I'm not smiling...) Say hi to all of our "people" at the hospital (security, environmental services and food services). Wave to fishies in the aquarium. Head up to 6th floor. Quick hi to Parrish at registration and get access badge permission to head back to hemo unit. Sign in and wave to our friends on first shift. (this is when we would get Activase injections for clots if necessary - which it was - a LOT!)
Head to family bathroom to change diaper and give medicines (all four blood pressure meds, sodium supplement, iron supplement, vitamin D supplement, reflux med, calcium supplement and tylenol for cramping, and yes - those were just his morning meds). Head across the hall to family kitchen. Turn on Disney channel (LOVED when they put a tv in there last summer!!). Warm up Matthew's bottle of decanted kidney friendly formula. (was decanted the night before for two hours from 10:30 pm to 12:30am, just in time for the 1am feed change) Say hi and wave to all of friendly nurses, techs, liver docs (they did rounds at 9am and always came in for coffee prior), social workers and child life specialists. Bolus feed of 60 ccs over an hours.
Someone from dialysis comes in around 10am to get us for our session. Head on back with a baby ready for his first nap of the day. Get undressed and weighed, (Matthew not me) take temp and get blood pressure. Laugh at how crazy high blood pressure is and shrug it off. Set UF goal for 1000, knowing he will start to cramp at 850 and only allow them to go to 900. Put on mask and sanitize hands with cleaning foam. Hold Matthew's attention for hook up and labs. Matthew tries his hardest to get every syringe he can to "help" the nurse. Keep sterile field away from his feet - it won't be sterile much longer... Set machine to dialyize. HOPE and PRAY it works. Begin three hour countdown of worry.
Roll Matthew onto his tummy and coerce him to take a much needed nap. Sigh as alarms beep, 9 year olds play xbox with volume set at 100 and nurses laugh and call to each other from across the unit. Matthew is out. Wait until the next blood pressure comes to make sure all is alright and he is not bottoming out or getting too high. OK, I have 15 minutes to pee and eat before it is time for the next blood pressure measurement. RUN! POTTY! SWALLOW! RUN! Next blood pressure squeezes comes around...and wakes up Matthew. YAY, a 20 minute nap. :) Get the gamecube tv from one of the techs. Put in a movie for Matthew.
At noon, heat up bottle of 60 cc's. Give another dose of blood pressure meds and anti-nausea medicine. Nurses administer Aranesp (yes, human plasma from the blood - NOT to be used in those that have congestive heart failure...) and ferric pyrophosphate citrate (which would make Matthew vomit if they gave it before I put food in his tummy). Matthew now starts cramping and is getting overtired while being restless at the same time. This is when mommy goes goofy and does everything in her power to make him laugh for the remaining hour. (or to hold him down as still as possible while the lines start to "suck" at his blood, pulling air and causing all sorts of commotion on the machine - the chanting "please don't clot, please don't clot" was used a lot here!) THE alarm sounds - one of the best sounds in the world. FREEDOM until Monday!
So then it is time to amuse Matthew again while we disengage him from the machine, heparinize and flush lines and clamp him off. Back to the scales, get a temp, measure blood pressure (for the 14th time in three hours) and get dressed. Wave to everyone vigorously saying bye-bye and blowing kisses (again, Matthew not me). Finish up last bit of bolus before getting in the car. It is now 1:30pm.
Head for home and pick up William at 3pm. Get home roughly around 3:30pm, try to get Matthew to take a catnap before his 4:30pm bolus...fail! Check blood pressure to see if we need a "bump up" dose. Get dinner started up and check in with hubby to see his arrival time. Balance dinner with bolus "shots" of 60cc's for an hour. Bolus feed and dinner are both done at 5:30pm. Eat, watch Matthew gag as us eating...very appetizing. Playtime/family for 30 minutes. At 6:45pm, get Matthew's bed time meds ready (see morning list) and set up feed pump for nightly feeds. Get boys to bed - start all over every Monday, Wednesday and Friday (adding LOTS of screaming, skin being peeled off and even higher blood pressure on Monday's for bandage changes).
Yeah- that was fun!
Friday- post transplant:
Turn off feeds when feed is complete and go back to bed, until Matthew starts jumping and squealing around 8am. Give morning meds at 8:30am (reflux medicine, bladder spasm med, lactobacillus, and steroid) 9am, feed 120cc bolus of UN-decanted, pop the top off the can, high calorie formula. :) Lasts about an hour and fifteen minutes. At 10am, give both anti-rejection meds.
PLAY!
Noon meds - Valcyte (on for only 4 more weeks) and Bactril (only four more months) and bladder spasm med. Followed by bolus feed of 120ccs. Then on to glorious NAPTIME! YAY (That is kind of mommy's favorite..especially since William is all done with naps now!)
This is followed by more playing and wreaking havoc of my house, while looking cute while doing so... yes, he is saying Uh Oh in the picture.
120 cc bolus at 4:30pm, mommy makes dinner, daddy comes home. Family time and BATH time!! Splishing, splashing, hooting and hollering commence. :)
Night meds, night feeds, night-night. To be continued the next day. Man, it's nice having a working kidney in there so we don't have to work as much on all the Stuff...just play. :) Thanks Marie. :)
Tuesday, March 16, 2010
my direction
This is a video I was proud of...sharing our story...getting the word out.
http://www.11alive.com/video/default.aspx?menuid=149#/News/Daily+11+%40+7-+%235+18+month+old+gets+a+new+kidney/49906865001/50317397001/68957395001
And then I opened my eyes and pushed my own feelings from that joyous moment aside. I'm glad they got the message of hope. People need to hold on to that - especially if that is all they have left. I wanted to be an advocate for so many things - unborn babies, preemies, the suffers of kidney disease, those waiting on the transplant list...and on and on. But I just can't do it all. I can't spread myself so thin, because then it all suffers. I'm not giving all of me to anyone.
So I have made a decision to pick up where the video left off...I'm going to be an advocate for donors. Everyone tells me - you must be so happy with your surgeon, nephrologist, hospital, caretakers...everyone. Yes. They say "this would never have happened without all of them to take care of Matthew". True, in a way. But honestly, it wouldn't have NEEDED to happen without Marie.
Without Marie's unwavering resolve to get my child healthy for the first time in his life...the hospital professionals would have been doing something else that day. A doctor can't make a working kidney out of thin air - and the one that does will be a multi-millionaire! He needs someone to volunteer, living or upon death, to give a kidney that works. Right now, according to the UNOS list, there are over 106,000 people waiting for an organ transplant, and 17 die each day because there are not enough organs to go around. So many are taken to Heaven, when Heaven KNOWS we need them here!
My sister in law and I will be walking in the Kidney Walk, sponsored by the Kidney Foundation on April 24th. We have formed a team - Team M&M (in hope for Matthew and in honor of Marie). We will wear green to signify the donor awareness ribbon. Please visit our site: http://donate.kidney.org/site/TR/Walk/GeorgiaandAlabama?px=1606628&pg=personal&fr_id=2431 Join our team! Help us make our goal and give the most we can to bettering the lives of others that are still waiting. Let us walk together (in person and in our hearts) to give them hope. So they know people care. So people can learn the truth about organ donation instead of the taboo.
If the life of your loved one depended on a list...I bet you would sign your donor card in a hurry.
http://www.11alive.com/video/default.aspx?menuid=149#/News/Daily+11+%40+7-+%235+18+month+old+gets+a+new+kidney/49906865001/50317397001/68957395001
And then I opened my eyes and pushed my own feelings from that joyous moment aside. I'm glad they got the message of hope. People need to hold on to that - especially if that is all they have left. I wanted to be an advocate for so many things - unborn babies, preemies, the suffers of kidney disease, those waiting on the transplant list...and on and on. But I just can't do it all. I can't spread myself so thin, because then it all suffers. I'm not giving all of me to anyone.
So I have made a decision to pick up where the video left off...I'm going to be an advocate for donors. Everyone tells me - you must be so happy with your surgeon, nephrologist, hospital, caretakers...everyone. Yes. They say "this would never have happened without all of them to take care of Matthew". True, in a way. But honestly, it wouldn't have NEEDED to happen without Marie.
Without Marie's unwavering resolve to get my child healthy for the first time in his life...the hospital professionals would have been doing something else that day. A doctor can't make a working kidney out of thin air - and the one that does will be a multi-millionaire! He needs someone to volunteer, living or upon death, to give a kidney that works. Right now, according to the UNOS list, there are over 106,000 people waiting for an organ transplant, and 17 die each day because there are not enough organs to go around. So many are taken to Heaven, when Heaven KNOWS we need them here!
My sister in law and I will be walking in the Kidney Walk, sponsored by the Kidney Foundation on April 24th. We have formed a team - Team M&M (in hope for Matthew and in honor of Marie). We will wear green to signify the donor awareness ribbon. Please visit our site: http://donate.kidney.org/site/TR/Walk/GeorgiaandAlabama?px=1606628&pg=personal&fr_id=2431 Join our team! Help us make our goal and give the most we can to bettering the lives of others that are still waiting. Let us walk together (in person and in our hearts) to give them hope. So they know people care. So people can learn the truth about organ donation instead of the taboo.
If the life of your loved one depended on a list...I bet you would sign your donor card in a hurry.
Wednesday, March 10, 2010
World Kidney Day
I've been quiet...I've been busy. It takes a LOT of energy to keep up with Matthew now. :) And we've been getting over a tummy bug. And who knew that a 24 hr bug could last 5 days in someone that was immunosuppressed? Now I know! Man, that was a LOT of puke. blech! Thursday will be a big day for us. We have clinic and Matthew's prograf levels and creatinine will be tested - with big hopes of lower values on each. (With dehydration and a 10% loss of body weight, the very medicines that help him to keep his kidney can kill his kidney...it's a fine line). Thursday is also a big day in other regards: World Kidney Day!!
So...how does this affect you? Well, have you checked in with YOUR kidneys recently? I didn't think so. The goal of World Kidney Day (as stated on www.worldkidneyday.org)-
# Raise awareness about our "amazing kidneys"
# Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
# Encourage systematic screening of all patients with diabetes and hypertension for CKD
# Encourage preventive behaviors
# Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations.
# Stress the important role of local and national health authorities in controlling the CKD epidemic. Health authorities worldwide will have to deal with high and escalating costs if no action is taken to treat the growing number of people with CKD. On World Kidney Day all governments are encouraged to take action and invest in further kidney screening.
Oh you don't have diabetes or high blood pressure? GREAT! Neither do I! Guess what? I have stage two kidney disease. I've had ONE UTI, that caused ONE kidney infection. One NASTY kidney infection that I kept explaining the fever due to sinus infections, the back pain to my college bookbag and working 12 hour shifts at the hospital on my feet, the fatigue due to getting 4-5 hrs of sleep nightly trying to get all of my classwork done while staying up on the phone with my boyfriend. Yeah, I still don't have high blood pressure; I still don't have diabetes. I've passed glucose tolerance tests in pregnancy; I've never passed protein in my urine. Technically...I should have healthy kidneys. I don't. All due to an infection from when I was 19 years old, and passed twin kidney stones. That was a fun day!
So just for the fun of it...ok...it's not fun but it will lead to MORE fun in your future if you find out...make an appointment with the doc. Pee in a cup, expose a vein, and put a cuff around your upper arm. Just to check.
I thank God for Matthew. I never would have known. Now I take supplements and follow a better diet to preserve kidney function. Mine are working at 82% and I've got a long way and a long time before they get bad...if they ever do. But it is peace of mind knowing. It helps me plan for the future. It makes me do research and gain knowledge. It allows me to spread the word about how awesome kidneys are and how often they are taken for granted.
Have you checked your kidneys lately? Maybe its time.
Happy World Kidney Day to all of my kidney friends and family!!
So...how does this affect you? Well, have you checked in with YOUR kidneys recently? I didn't think so. The goal of World Kidney Day (as stated on www.worldkidneyday.org)-
# Raise awareness about our "amazing kidneys"
# Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
# Encourage systematic screening of all patients with diabetes and hypertension for CKD
# Encourage preventive behaviors
# Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations.
# Stress the important role of local and national health authorities in controlling the CKD epidemic. Health authorities worldwide will have to deal with high and escalating costs if no action is taken to treat the growing number of people with CKD. On World Kidney Day all governments are encouraged to take action and invest in further kidney screening.
Oh you don't have diabetes or high blood pressure? GREAT! Neither do I! Guess what? I have stage two kidney disease. I've had ONE UTI, that caused ONE kidney infection. One NASTY kidney infection that I kept explaining the fever due to sinus infections, the back pain to my college bookbag and working 12 hour shifts at the hospital on my feet, the fatigue due to getting 4-5 hrs of sleep nightly trying to get all of my classwork done while staying up on the phone with my boyfriend. Yeah, I still don't have high blood pressure; I still don't have diabetes. I've passed glucose tolerance tests in pregnancy; I've never passed protein in my urine. Technically...I should have healthy kidneys. I don't. All due to an infection from when I was 19 years old, and passed twin kidney stones. That was a fun day!
So just for the fun of it...ok...it's not fun but it will lead to MORE fun in your future if you find out...make an appointment with the doc. Pee in a cup, expose a vein, and put a cuff around your upper arm. Just to check.
I thank God for Matthew. I never would have known. Now I take supplements and follow a better diet to preserve kidney function. Mine are working at 82% and I've got a long way and a long time before they get bad...if they ever do. But it is peace of mind knowing. It helps me plan for the future. It makes me do research and gain knowledge. It allows me to spread the word about how awesome kidneys are and how often they are taken for granted.
Have you checked your kidneys lately? Maybe its time.
Happy World Kidney Day to all of my kidney friends and family!!
Friday, February 19, 2010
Too much
So I've been wondering...have I gone too far with my son? I look at him right this minute and just say that's absurd. He's SO happy, he's SO healthy! How can you doubt yourself Karen? Well, pretty easily actually. I am a mom, and mom's always wonder if they have done the best for their children in every regard. And at the moment...I'm wondering if I've done too much.
Yeah, after my impromptu nap last night at 8pm...I was wide awake by 11pm to watch Private Practice (the spin off of Grey's Anantomy). I'm a junkie to medical drama where adults act like teenagers getting mixed up in each other's love lives. It's a flaw I've learned to embrace. :) But on that episode there were parents of a tiny 25 weeker with lots of complications. The parents were holding out on hope that their child would get to live a normal life one day if they just kept fighting. The doctors didn't agree. They were suggesting medical assistance be stopped. In the end, it was. The parents finally got to hold their baby free of wires and just let him feel love.
Now no way can I compare my son's medical journey to one so severe as what this little guy was facing...but the similarities of what the doctors said kind of brought it home. I was told to terminate before he was even born and I resisted and fought for him. I was told by FAMILY and FRIENDS that said too much was being done...why don't I just stop once he was born. I've had to push the medical community, transplant team and home healthcare personnel so they would realize Matthew was a person. Not a number, a statistic or a nameless being. He was MY boy and I wanted the best for him.
I also wanted the best for me. I wanted Matthew here. I kept reasoning that if God wanted to take him...he'd do it anyway. During surgery, during sepsis or even while driving over ice to get him to hemodialysis. He's still here. I think he has a big purpose on this earth...I can't wait to find out what it is. But also, I wonder if my selfishness is what has kept him going. Did I "taint" his outcome due to my pushiness?
If I hadn't gone along with the interventions and fetal surgeries...Matthew wouldn't be here. There would be no "well, a miracle could happen". You can't grow a urethra if you don't have one. His lungs would not have formed, his heart would be misshapen and his body would have curled in over itself from lack of fluid and space to stretch out. Did I "play God" in advocating for my son? Did I push the medical community to keep him alive when according to their books, he should be dead? Who am I to put my son through 20 surgeries just so I can hear his giggles?
I'm his mom. I wouldn't change a thing. God gave us the tools of surgery, dialysis, and medicine to make things better. They work with God, because through Him all things are possible. My son is here. He shouldn't be. He's used up is "nine lives" and is on number 11 right now. God reaffirms that to me through people like Marie. Through donors everywhere, nurses, doctors, surgeons, pharmacists. God gave them their gifts for a reason. He gave me my son for a reason. I am grateful for both.
I am throwing away the receipt, no exchange necessary for Matthew. Thank you God for the perfect gift. :)
Yeah, after my impromptu nap last night at 8pm...I was wide awake by 11pm to watch Private Practice (the spin off of Grey's Anantomy). I'm a junkie to medical drama where adults act like teenagers getting mixed up in each other's love lives. It's a flaw I've learned to embrace. :) But on that episode there were parents of a tiny 25 weeker with lots of complications. The parents were holding out on hope that their child would get to live a normal life one day if they just kept fighting. The doctors didn't agree. They were suggesting medical assistance be stopped. In the end, it was. The parents finally got to hold their baby free of wires and just let him feel love.
Now no way can I compare my son's medical journey to one so severe as what this little guy was facing...but the similarities of what the doctors said kind of brought it home. I was told to terminate before he was even born and I resisted and fought for him. I was told by FAMILY and FRIENDS that said too much was being done...why don't I just stop once he was born. I've had to push the medical community, transplant team and home healthcare personnel so they would realize Matthew was a person. Not a number, a statistic or a nameless being. He was MY boy and I wanted the best for him.
I also wanted the best for me. I wanted Matthew here. I kept reasoning that if God wanted to take him...he'd do it anyway. During surgery, during sepsis or even while driving over ice to get him to hemodialysis. He's still here. I think he has a big purpose on this earth...I can't wait to find out what it is. But also, I wonder if my selfishness is what has kept him going. Did I "taint" his outcome due to my pushiness?
If I hadn't gone along with the interventions and fetal surgeries...Matthew wouldn't be here. There would be no "well, a miracle could happen". You can't grow a urethra if you don't have one. His lungs would not have formed, his heart would be misshapen and his body would have curled in over itself from lack of fluid and space to stretch out. Did I "play God" in advocating for my son? Did I push the medical community to keep him alive when according to their books, he should be dead? Who am I to put my son through 20 surgeries just so I can hear his giggles?
I'm his mom. I wouldn't change a thing. God gave us the tools of surgery, dialysis, and medicine to make things better. They work with God, because through Him all things are possible. My son is here. He shouldn't be. He's used up is "nine lives" and is on number 11 right now. God reaffirms that to me through people like Marie. Through donors everywhere, nurses, doctors, surgeons, pharmacists. God gave them their gifts for a reason. He gave me my son for a reason. I am grateful for both.
I am throwing away the receipt, no exchange necessary for Matthew. Thank you God for the perfect gift. :)
Tuesday, February 9, 2010
And then it snowed
If you couldn't tell by my previous post...I was having some hard times dealing with sweet Aubrey's passing. I just didn't see what purpose that could have served. But then realized the purpose wasn't for me to understand. I felt both the guilt of having a child that has defied death (let me count real quick) 9 times and the empathy of being a parent that has had to deal with the shock, confusion, fear and anger that their child was chosen to be so greatly tested.
If you have been reading my blog since the beginning (I think the whole three of you) then you might remember my feelings on snow. No, not the blizzard in the east...just some random snow flurries or a light dusting that makes a southerner look around and say "wow, that's beautiful". Every time I had doubts during my complicated pregnancy, namely before each of the fetal surgeries...God would send me snow...even in April. :)
It would cleanse me of my selfish wants and reaffirm my faith that God was in control of the situation. I just had a supporting role in all of this, no longer the lead actor. (Kind of crushing to my Leo ego too). I would pray that God would send me some sort of sign that all would be ok, that I could walk into that ultrasound room with my head held high KNOWING I would hear a heartbeat instead of silence. The bad thing about having a baby that was without amniotic fluid - risk of cord compression/suffocation...I was a major kick counter momma!!
On the way to memorial service, our car was hit with tiny snow flakes. Going into the church, flurries clung to my black dress coat. Waiting in the receiving line to pay our respects to the family, I noticed white dots swirling in the trees and bushes outside the windows. And again leaving the church, tiny flakes were flying into my red eyes making them sting all over again. Once I reached my parents house to collect my boys, it stopped.
God was telling that He was with Aubrey and Aubrey was just fine. Don't worry Karen, I've got this family well covered with family and friends and love. Just be there for them, share Aubrey's memory with others and love each moment you have with your family and children. Be extra thankful for the handcrafted snowflake I put into your life on January 14th when your son's blood was truly cleansed for the first time ever.
I will.
If you have been reading my blog since the beginning (I think the whole three of you) then you might remember my feelings on snow. No, not the blizzard in the east...just some random snow flurries or a light dusting that makes a southerner look around and say "wow, that's beautiful". Every time I had doubts during my complicated pregnancy, namely before each of the fetal surgeries...God would send me snow...even in April. :)
It would cleanse me of my selfish wants and reaffirm my faith that God was in control of the situation. I just had a supporting role in all of this, no longer the lead actor. (Kind of crushing to my Leo ego too). I would pray that God would send me some sort of sign that all would be ok, that I could walk into that ultrasound room with my head held high KNOWING I would hear a heartbeat instead of silence. The bad thing about having a baby that was without amniotic fluid - risk of cord compression/suffocation...I was a major kick counter momma!!
On the way to memorial service, our car was hit with tiny snow flakes. Going into the church, flurries clung to my black dress coat. Waiting in the receiving line to pay our respects to the family, I noticed white dots swirling in the trees and bushes outside the windows. And again leaving the church, tiny flakes were flying into my red eyes making them sting all over again. Once I reached my parents house to collect my boys, it stopped.
God was telling that He was with Aubrey and Aubrey was just fine. Don't worry Karen, I've got this family well covered with family and friends and love. Just be there for them, share Aubrey's memory with others and love each moment you have with your family and children. Be extra thankful for the handcrafted snowflake I put into your life on January 14th when your son's blood was truly cleansed for the first time ever.
I will.
Friday, February 5, 2010
I don't get it...
Why is God mean? I know He is fair and just and loving...but yesterday, I didn't see that. My friend's daughter, whose 2nd birthday is on the 15th, passed away in the wee hours of the morning yesterday. A nearly two year old...seriously...that for an entire year of her life had to battle cancer. She was "cured" of it through a liver transplant, only to relapse 6 months later. Yet the drunks, rapists, murderers and just plain jerks are feeling fine and living fancy free!! It's a crock of crap God - just so You know.
I don't understand why children die, why children suffer. I went to Sunday school. I sang "Jesus loves the little children". It completely stunk that Aubrey had to suffer for months, but I think what is worse is the suffering her four year old sister will endure now. How do you explain death to a child that can't understand that fact that a cold will not kill her. Daddy is going to work, he will not be gone forever like Aubrey. You will see Aubrey again one day. No, not tomorrow sweetie. Yes, we want you play together too, but please don't talk about leaving mommy and daddy anymore - it makes us sad.
I just can't imagine!
I know God's purpose is better than our own. I know God knows more than us. I know God is watching over his children of all ages. But it doesn't mean it doesn't suck. It does - big time.
I have NO sympathy for those people that drink and smoke themselves into cancer. Well, that's too bad - guess you shouldn't have been a chimney for five decades huh?? I'm a firm believer in what goes around comes around. If you are stupid and put crap in your body, your body will get even with you - whether from a heart attach with too many Whoppers or emphysema from too many cigarettes (which is what killed one of grandfathers). But a child hasn't been around to do anything wrong! I know God doesn't work that way - punishing those that speed or lie or cheat on their spouses (I would LOVE if He gave everyone that commits adultery a scorching case of the clap - again...I'm mean like that). But He's not. I just don't get how He picks and chooses. I hate how He picks and chooses. Why this child and not some other child? Why that child and not that child there? I guess if I had the answers I would be a millionaire and that is not the case!
I will see how God unfolds His plans with their family and with our family. I'm SO happy He placed us together earlier last spring. I hope I am able to provide any means of comfort and support that I can to them at this time. Please keep them in your prayers. Pray for the parents that teeter back and forth between shock and despair. Pray for Aubrey's older sister that she will get through this with as little long term effects as possible. I hope Aubrey visits her sister in her dreams often. Pray for the grandparents and extended family, for they lost a loved one too but are often overlooked during the funeral and weeks following. Pray that Aubrey is finally at peace and feels no pain. I pray she is happy, healthy and running wild.
I will miss that twinkle in her eyes.
The last time I saw her, I was leaving with Matthew from dialysis and she was coming in for transplant labs. Her mom and I stopped our strollers a minute to talk to one another while the babies talked to each other. I looked down and they were holding hands. I think they would have been great playmates. One day...one day. Rest sweet Aubrey, you deserve it little angel.
I don't understand why children die, why children suffer. I went to Sunday school. I sang "Jesus loves the little children". It completely stunk that Aubrey had to suffer for months, but I think what is worse is the suffering her four year old sister will endure now. How do you explain death to a child that can't understand that fact that a cold will not kill her. Daddy is going to work, he will not be gone forever like Aubrey. You will see Aubrey again one day. No, not tomorrow sweetie. Yes, we want you play together too, but please don't talk about leaving mommy and daddy anymore - it makes us sad.
I just can't imagine!
I know God's purpose is better than our own. I know God knows more than us. I know God is watching over his children of all ages. But it doesn't mean it doesn't suck. It does - big time.
I have NO sympathy for those people that drink and smoke themselves into cancer. Well, that's too bad - guess you shouldn't have been a chimney for five decades huh?? I'm a firm believer in what goes around comes around. If you are stupid and put crap in your body, your body will get even with you - whether from a heart attach with too many Whoppers or emphysema from too many cigarettes (which is what killed one of grandfathers). But a child hasn't been around to do anything wrong! I know God doesn't work that way - punishing those that speed or lie or cheat on their spouses (I would LOVE if He gave everyone that commits adultery a scorching case of the clap - again...I'm mean like that). But He's not. I just don't get how He picks and chooses. I hate how He picks and chooses. Why this child and not some other child? Why that child and not that child there? I guess if I had the answers I would be a millionaire and that is not the case!
I will see how God unfolds His plans with their family and with our family. I'm SO happy He placed us together earlier last spring. I hope I am able to provide any means of comfort and support that I can to them at this time. Please keep them in your prayers. Pray for the parents that teeter back and forth between shock and despair. Pray for Aubrey's older sister that she will get through this with as little long term effects as possible. I hope Aubrey visits her sister in her dreams often. Pray for the grandparents and extended family, for they lost a loved one too but are often overlooked during the funeral and weeks following. Pray that Aubrey is finally at peace and feels no pain. I pray she is happy, healthy and running wild.
I will miss that twinkle in her eyes.
The last time I saw her, I was leaving with Matthew from dialysis and she was coming in for transplant labs. Her mom and I stopped our strollers a minute to talk to one another while the babies talked to each other. I looked down and they were holding hands. I think they would have been great playmates. One day...one day. Rest sweet Aubrey, you deserve it little angel.
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