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.
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