If I had a million dollars - oh the things that I would do! I would just completely replace the a/c unit instead of buying a $1400 coil! I would donate to our Children's hospital. It would in no way, shape or form compensate the time and attention they have given us...but it would be a nice start. I would help my fellow kidney mommies that are getting short changed by the government, because why help the kids that can't live without medicines and surgeries in favor of helping able bodied lazy people?
I would pay for a trip to Disney for all of us too - a week of magic for our miracles. I would set up support and non-profit groups to help those facing a high risk pregnancy, families separated and/or out of work due to NICU stays, those working several jobs just to make ends meet for medicine co-pays, and a group solely to take care of the caretakers.
After living with a sick child and seeing other families dealing with this too, money seems so different now. Yes, I want more...we need more. Especially in 15 short months when medicare runs out - that's gonna hurt! But if I came into some money, I just could NOT spend it on us. I have a family out there that needs help too. Most of us want what money can't buy - health, normalcy, peace of mind. Fancy cars do not speed up your wait on a transplant list. Huge homes can not shelter your heart and mind from what may be lurking around the corner. Stylish clothes may cover up physical scars, but not emotional ones. A million dollars means nothing when you've lost your dream, your life, your soul, your child.
If I had a million dollars, I would buy back time. Time for my friends to have with their children: Aidan, Matthew, Vayden, Conner, Emelyn, Adam, Nels and SO many others...it's just unreal. I would give each of them just one more day. I know it would never be enough. You can't put a time limit on how long you could and should love your children. You can't put a price on it either.
Here's a poem I found that I think sums up a mother's love for her children near and far.The Cord
We are connected,My child and I,by an invisible cord. Not seen by the eye.
It's not like the cord that connects us 'til birth. This cord can't been seen by any on Earth.This cord does it's work right from the start.It binds us together attached to my heart.I know that it's there though no one can see the invisible cord from my child to me. The strength of this cord is hard to describe.It can't be destroyed. It can't be denied. It's stronger than any cord man could create. It withstands the test can hold any weight. And though you are gone, though you're not here with me, the cord is still there, but no one can see. It pulls at my heart. I am bruised...I am sore, but this cord is my lifeline as never before. I am thankful that God connects us this way. A mother and child death can't take it away!
I remember them! I talk about them. I love them. I miss them too. Here's a million wishes that no matter how long it has been, you always feel them near you. And a special shout out to sweet Aidan as he approaches his angel-versary. He outgrew his tired and sick little body to grow great beautiful wings.
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Monday, September 26, 2011
Thursday, July 7, 2011
It's not Dumbo
Alright, we know how to help out the elephant's caretaker, but what about the one riding the elephant night and day. Wait, let me re-phrase that...what about the one tugging this 8 ton weight on his/her shoulders? The one that has to deal with the symptoms, surgeries, procedures and numerous hospital stays. How do we help them carry their burden?
I'm going to tell you something that you may find odd - do not treat them different! Have you ever reacted badly, or worse...not reacted at all to someone walking in a building with a elephant on their back? Have you ever turned your head away from a child in a wheel chair? Are you guilty of rolling your eyes when your dinner is "ruined" by someone suffering from Autism or Tourette's syndrome as they scream and shout due to some trigger that set them off? Have you ever whispered behind your hand to another person as you watch someone receive a treatment of some sort that might be shocking to you, as you have never witnessed it before? Come on, admit it. I can guarantee that everyone has done at least ONE of those things at some point in their life, whether they were 5 or 50. I know I have. :(
Don't be scared to make eye contact, smile and say hi to someone with an elephant. Yes, carrying an elephant around can form thick skin and calluses, but their hearts are still very tender. They know something is different about them, their lives. But they still need friends, love and a gentle touch. Can it be overwhelming - absolutely! Matthew had many visitors in the NICU when he was born - both family and friends. I remember the reaction of each person when they met him for the first time...95% of them cried. It is intimidating seeing a baby just shy of 4 pounds hooked up to so much stuff, but I can tell him how loved he was that so many people went out of their way to see him.
It's alright to be curious; it's ok to ask questions. Please do! If the elephant handler is too young to answer - ask the zoo keeper! Even if you do not know them! Trust me, it's OK. Yesterday, Matthew did NOT want to nap (stinking three year old transition time) so off when went to a nearby playground. There was a little boy there already when we showed up. William and the boy took off fighting invisible zombies (I think they watch too much Scooby Doo!) Since we were out in the middle of the afternoon, I had to bring Matthew's supplies for water boluses. As I was taking out the syringe and placing it in Matthew's g-tube extension, the little boy walks over. "what are you doing to him?!?" (The look of astonishment on his face was priceless by the way) ;) I told him that this was the way Matthew took in food and drink. He asked more question, and I answered them. His mom had come over as well and we talked too. When I gave Matthew a small cup with water in it to try and get him to take a sip (and he did - YAY), the little boy clapped louder than any of us on Matthew's victory. Such a small thing, with so much meaning. It meant he was pulling for my little elephant handler and celebrating his accomplishments. Naturally us moms traded phone numbers and will meet back up soon.
An elephant handler does not need a free cruise or to meet the popular NFL star of the year, they just need to be accepted. In the littlest of ways - a smile, a playdate or a hug. No need to go above the call of duty. No need to change your life around or do anything out of the ordinary. Just say Hi when you come across one. You'll see their back straighten and their shoulders lift. That elephant won't be so heavy for the remainder of the day. And that means a lot.
I'm going to tell you something that you may find odd - do not treat them different! Have you ever reacted badly, or worse...not reacted at all to someone walking in a building with a elephant on their back? Have you ever turned your head away from a child in a wheel chair? Are you guilty of rolling your eyes when your dinner is "ruined" by someone suffering from Autism or Tourette's syndrome as they scream and shout due to some trigger that set them off? Have you ever whispered behind your hand to another person as you watch someone receive a treatment of some sort that might be shocking to you, as you have never witnessed it before? Come on, admit it. I can guarantee that everyone has done at least ONE of those things at some point in their life, whether they were 5 or 50. I know I have. :(
Don't be scared to make eye contact, smile and say hi to someone with an elephant. Yes, carrying an elephant around can form thick skin and calluses, but their hearts are still very tender. They know something is different about them, their lives. But they still need friends, love and a gentle touch. Can it be overwhelming - absolutely! Matthew had many visitors in the NICU when he was born - both family and friends. I remember the reaction of each person when they met him for the first time...95% of them cried. It is intimidating seeing a baby just shy of 4 pounds hooked up to so much stuff, but I can tell him how loved he was that so many people went out of their way to see him.
It's alright to be curious; it's ok to ask questions. Please do! If the elephant handler is too young to answer - ask the zoo keeper! Even if you do not know them! Trust me, it's OK. Yesterday, Matthew did NOT want to nap (stinking three year old transition time) so off when went to a nearby playground. There was a little boy there already when we showed up. William and the boy took off fighting invisible zombies (I think they watch too much Scooby Doo!) Since we were out in the middle of the afternoon, I had to bring Matthew's supplies for water boluses. As I was taking out the syringe and placing it in Matthew's g-tube extension, the little boy walks over. "what are you doing to him?!?" (The look of astonishment on his face was priceless by the way) ;) I told him that this was the way Matthew took in food and drink. He asked more question, and I answered them. His mom had come over as well and we talked too. When I gave Matthew a small cup with water in it to try and get him to take a sip (and he did - YAY), the little boy clapped louder than any of us on Matthew's victory. Such a small thing, with so much meaning. It meant he was pulling for my little elephant handler and celebrating his accomplishments. Naturally us moms traded phone numbers and will meet back up soon.
An elephant handler does not need a free cruise or to meet the popular NFL star of the year, they just need to be accepted. In the littlest of ways - a smile, a playdate or a hug. No need to go above the call of duty. No need to change your life around or do anything out of the ordinary. Just say Hi when you come across one. You'll see their back straighten and their shoulders lift. That elephant won't be so heavy for the remainder of the day. And that means a lot.
Tuesday, July 5, 2011
Let out the elephants
I'm a very lucky girl! God didn't give me a sister through my bloodline family, but boy did He go over and above in my friends. They've held me up when I was exhausted both mentally and physically; held me back when I knew I would regret something; and held me down when I was when I wanted to do nothing more than just go off on everyone. My sisters really came though once Matthew arrived.
Audrey never lets a lab, procedure, surgery or sickness go unnoticed, always calling to ask what's up. Robin visits me in the hospital and even brings over her yummier than mine cooking! Janet never lets William feel unloved since most attention goes to Matthew - she plays one on one with him. And Suzie Q offered to be tested for my sweet boy, but she took the harder road and kept Downey girl for us while we were inpatient.;) My friends and fellow sisters that are not local - lifted us up in prayer and checked in on us often. My Wilmington mommy group sent flowers after we received the poor prognosis during pregnancy. :) Like I said, I'm a very lucky girl!
A life threatening disease in a child can be likened to an elephant in the room. It's unusual to find an elephant in the family living room. You have not been trained to take care of said elephant and who wants to get stomped by those huge feet?!? Better to just ignore it - it will go away or blend in or something...eventually...right? No, it won't. And the sad part is that when you ignore the elephant, you ignore the child, the family, and the disease. That's not helping anyone.
I understand no one wants to bring up bad news, no one wants to see their friend cry and no one wants to hear how awful a child is doing - but really you need to put your big boy/girl underwear on and ask. The best thing you can do for a parent of a sick child is ask. And I'm not talking about ear infections and the flu here (though it's still nice to ask so they know you care). I'm talking the BIG elephants - lupus, Tay-Sachs, and one near and dear to my heart, kidney disease. The incurable diseases that we can only hope for a cure and pray it doesn't take our child before we reach it.
Another thing to note when dealing with parents of sick children, do not compare situations and do not say "I know how you feel". That saying, meant to bring about a common bond, just separates you further actually...sometimes bringing up feelings of resent. (no matter how hard the parent of the sick child does not wish it!) If a child had an allergy induced asthma attack - that's scary! It is not any way, shape or form equivalent to a child needing a tracheostomy. Do not say you know how that parent feels, unless your son or daughter has a tracheostomy as well. I rarely say I know how a parent feels in my own little kidney group, because each of our cases are different! I do not know what it is like to loose a child. I do know what is like to be told my child is going to die. I do know what it is like to see him stop breathing, hear a flatline alarm on the monitor when his heart stopped beating, and to be told to that I might need to have a priest or member of the clergy nearby for a surgery. But those can not compare with loosing a son or daughter - no matter the age 2 weeks or 40 years old! The pain doesn't lessen as your child grows. To do so is to come into their room holding a flamingo. Well, it's not as big as an elephant, but it's more brightly colored therefore easier to see and talk about. No, put the flamingo in the backyard, give it some water and go hug your friend.
Another tip, try not to make "light" of the situation. I personally do not mind this one as much...as I'm usually that person that tries to make someone laugh - and inevitably ends up looking a bit stupid. But some people do take offense, or take things personally. Do not make comments about how you wish your child had a gtube so you wouldn't have to chase her with a spoon when she was on antibiotics. Do not say how lucky someone was to have not had to endure the last month...or two...or three of pregnancy and get really uncomfortable when their 28 week preemie is clinging to life. It would be great if you brought over a romantic comedy or funny book. Cut out cute Garfield cartoons or forward a funny email. Just remember who you are talking to when you are talking to them. Dressing the elephant in clown shoes and a tu-tu does not mean the elephant won't step all over our children and our hearts.
The biggest no-no's to say to a parent with a sick child are often the ones that meant out of sincerity, making them hurt more - knowing they were meant to soothe. Knock these off your lists to say to anyone going through any type of disease/illness in the family - "This to shall pass", "I don't think I could ever do what you do", and "I pray you get a healthy child next time/ at least you have a healthy child too". See - these do not sound BAD! And they mean really GOOD things from people. But to a parent with a sick child, it hits below the belt actually. We know this will pass, but you know what...we are not sure we want it to immediately. Because right now, at this moment, we have our child. S/he may be sick and their life may be holding on by a single thread - but we wouldn't trade one minute away from them for all of the world. I don't know how many times I have heard my friends say how they would LOVE to hook their child up to dialysis one more time, to clean up vomit or to hold him down for labs - because they are not here any more. And yes, you could do what I do - every parent can and does when it happens to them. Do you want to? Hell no! Do I want to? HELL NO! But I do - I do it for my son. I will let you in on a secret...just because I smile when I talk to you about elephants does not make me strong, it just means I care about you and don't want to make you uncomfortable. I can't let my guard down - I have to hold it together for other people...namely my sons.
I've noticed the saying "as long as it's healthy, we don't care what the gender is" both before and after Matthew. I get it - who would wish a chronic disease on an infant? I'm not a zookeeper myself! Taking a vertebrate zoology class in college did NOT prepare me for elephants in my house! I wanted a healthy child too. But I did not get one. I got an unhealthy child, with a life threatening disease of which there is no cure (no - transplant is not a cure - it's a treatment). And you know what? I. Would. Not. Trade. Him. For. Anything! Has life been harder for our family - absolutely! Have you ever tried to pack an elephant in the car for vacation - does NOT fit into a normal family sedan! But life has been more rewarding. We have our own little private circus show just for us. And having another child that is healthy already - we know what a blessing that is. But having our sick child -s/he is just as much a blessing to our family...and would be to yours too.
If you know someone in your life that is attempting to tame and train an elephant, just be there for them. You do not have to jump through hoops, bring over gifts or light up a building in their favorite shape. You just have to be there for them. Ask them how their child is doing. Ask them how they are doing. Let them talk, share, cry and laugh with you. The hardest time to parent a sick child...is when they are doing their best actually. The best of times can become the worst of times as your mind has a minute to think and process. How long do elephants live? What is the cost of elephant upkeep? Will the elephant remain tame or will its wild roots flare up suddenly? The quiet times are unsettling to say the least. But with friends and family around - anyone can get through it. Both new and veteran zookeepers.
Audrey never lets a lab, procedure, surgery or sickness go unnoticed, always calling to ask what's up. Robin visits me in the hospital and even brings over her yummier than mine cooking! Janet never lets William feel unloved since most attention goes to Matthew - she plays one on one with him. And Suzie Q offered to be tested for my sweet boy, but she took the harder road and kept Downey girl for us while we were inpatient.;) My friends and fellow sisters that are not local - lifted us up in prayer and checked in on us often. My Wilmington mommy group sent flowers after we received the poor prognosis during pregnancy. :) Like I said, I'm a very lucky girl!
A life threatening disease in a child can be likened to an elephant in the room. It's unusual to find an elephant in the family living room. You have not been trained to take care of said elephant and who wants to get stomped by those huge feet?!? Better to just ignore it - it will go away or blend in or something...eventually...right? No, it won't. And the sad part is that when you ignore the elephant, you ignore the child, the family, and the disease. That's not helping anyone.
I understand no one wants to bring up bad news, no one wants to see their friend cry and no one wants to hear how awful a child is doing - but really you need to put your big boy/girl underwear on and ask. The best thing you can do for a parent of a sick child is ask. And I'm not talking about ear infections and the flu here (though it's still nice to ask so they know you care). I'm talking the BIG elephants - lupus, Tay-Sachs, and one near and dear to my heart, kidney disease. The incurable diseases that we can only hope for a cure and pray it doesn't take our child before we reach it.
Another thing to note when dealing with parents of sick children, do not compare situations and do not say "I know how you feel". That saying, meant to bring about a common bond, just separates you further actually...sometimes bringing up feelings of resent. (no matter how hard the parent of the sick child does not wish it!) If a child had an allergy induced asthma attack - that's scary! It is not any way, shape or form equivalent to a child needing a tracheostomy. Do not say you know how that parent feels, unless your son or daughter has a tracheostomy as well. I rarely say I know how a parent feels in my own little kidney group, because each of our cases are different! I do not know what it is like to loose a child. I do know what is like to be told my child is going to die. I do know what it is like to see him stop breathing, hear a flatline alarm on the monitor when his heart stopped beating, and to be told to that I might need to have a priest or member of the clergy nearby for a surgery. But those can not compare with loosing a son or daughter - no matter the age 2 weeks or 40 years old! The pain doesn't lessen as your child grows. To do so is to come into their room holding a flamingo. Well, it's not as big as an elephant, but it's more brightly colored therefore easier to see and talk about. No, put the flamingo in the backyard, give it some water and go hug your friend.
Another tip, try not to make "light" of the situation. I personally do not mind this one as much...as I'm usually that person that tries to make someone laugh - and inevitably ends up looking a bit stupid. But some people do take offense, or take things personally. Do not make comments about how you wish your child had a gtube so you wouldn't have to chase her with a spoon when she was on antibiotics. Do not say how lucky someone was to have not had to endure the last month...or two...or three of pregnancy and get really uncomfortable when their 28 week preemie is clinging to life. It would be great if you brought over a romantic comedy or funny book. Cut out cute Garfield cartoons or forward a funny email. Just remember who you are talking to when you are talking to them. Dressing the elephant in clown shoes and a tu-tu does not mean the elephant won't step all over our children and our hearts.
The biggest no-no's to say to a parent with a sick child are often the ones that meant out of sincerity, making them hurt more - knowing they were meant to soothe. Knock these off your lists to say to anyone going through any type of disease/illness in the family - "This to shall pass", "I don't think I could ever do what you do", and "I pray you get a healthy child next time/ at least you have a healthy child too". See - these do not sound BAD! And they mean really GOOD things from people. But to a parent with a sick child, it hits below the belt actually. We know this will pass, but you know what...we are not sure we want it to immediately. Because right now, at this moment, we have our child. S/he may be sick and their life may be holding on by a single thread - but we wouldn't trade one minute away from them for all of the world. I don't know how many times I have heard my friends say how they would LOVE to hook their child up to dialysis one more time, to clean up vomit or to hold him down for labs - because they are not here any more. And yes, you could do what I do - every parent can and does when it happens to them. Do you want to? Hell no! Do I want to? HELL NO! But I do - I do it for my son. I will let you in on a secret...just because I smile when I talk to you about elephants does not make me strong, it just means I care about you and don't want to make you uncomfortable. I can't let my guard down - I have to hold it together for other people...namely my sons.
I've noticed the saying "as long as it's healthy, we don't care what the gender is" both before and after Matthew. I get it - who would wish a chronic disease on an infant? I'm not a zookeeper myself! Taking a vertebrate zoology class in college did NOT prepare me for elephants in my house! I wanted a healthy child too. But I did not get one. I got an unhealthy child, with a life threatening disease of which there is no cure (no - transplant is not a cure - it's a treatment). And you know what? I. Would. Not. Trade. Him. For. Anything! Has life been harder for our family - absolutely! Have you ever tried to pack an elephant in the car for vacation - does NOT fit into a normal family sedan! But life has been more rewarding. We have our own little private circus show just for us. And having another child that is healthy already - we know what a blessing that is. But having our sick child -s/he is just as much a blessing to our family...and would be to yours too.
If you know someone in your life that is attempting to tame and train an elephant, just be there for them. You do not have to jump through hoops, bring over gifts or light up a building in their favorite shape. You just have to be there for them. Ask them how their child is doing. Ask them how they are doing. Let them talk, share, cry and laugh with you. The hardest time to parent a sick child...is when they are doing their best actually. The best of times can become the worst of times as your mind has a minute to think and process. How long do elephants live? What is the cost of elephant upkeep? Will the elephant remain tame or will its wild roots flare up suddenly? The quiet times are unsettling to say the least. But with friends and family around - anyone can get through it. Both new and veteran zookeepers.
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.
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.
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.
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!!
Wednesday, August 5, 2009
Back to work
Man, have I been spoiled. My husband has been home for two months and took full advantage of it. He went to dialysis on Mondays so I didn't have to pull double duty. Sometimes he even went on Friday too if I didn't sleep well or had arranged a playdate for William. We were able to all eat together as a family at 5:30pm. I was able to go to the grocery store at normal hours, run errands as needed and had someone else to walk to dog during the day. I thoroughly enjoyed it. But it's all over now. :(
I'm NOT saying I don't enjoy doing the mommy things, I do...but it was nice having a break - sharing the load. I think it is apparent that my job is more than just mom. Mom in and of itself is a lot. Throw in twice a week dialysis runs (that last anywhere from 8 -9 hrs start to finish), physical therapy on Wednesdays, daily blood pressure checks (which he enjoys so much let me tell you), administering meds on a strict schedule and bolus feeds with a 2 oz syringe directly into my son's stomach every three hours...this ain't your average mommy day. On top of that, I have to do all the "normal" mommy things for my three year old. We don't get out of the house much. My errands are now run after 8pm, but at least the grocery store isn't crowded. ;) Now I'm not saying this in a my life is harder than your life or please pity me - I'm just saying: MAN I MISS MY HUBBY! :)
I have taken pictures (on request on my sister Audrey) of all the aspects of Matthew's day. She wanted to better understand what I was saying when I was talking about things. I am going to share a picture commentary of a "day in the life of Matthew" either tomorrow or Friday. As you can see by all that above stuff that is written, I don't have much free time during the day. Matthew is napping and William is playing cars (what else is new?). But I have to go to the computer downstairs in the office to download photos instead of the laptop on the coffee table...so it takes time getting down there. I promise by this weekend at the latest.
I hope that by doing this, it makes my son seem less fragile actually. When you see all of these tubes and ports and catheters - it really freaks people out. Myself included when he first got them! I just want to familiarize people with a new way of life. Maybe help someone else to understand or empathize with other special/medical needs children. They will not break (they are actually stronger than any other children I have met!). They are not different, at least no more than any child is from any other child. They just have a unique way of doing things. Their just extra special.
I'm NOT saying I don't enjoy doing the mommy things, I do...but it was nice having a break - sharing the load. I think it is apparent that my job is more than just mom. Mom in and of itself is a lot. Throw in twice a week dialysis runs (that last anywhere from 8 -9 hrs start to finish), physical therapy on Wednesdays, daily blood pressure checks (which he enjoys so much let me tell you), administering meds on a strict schedule and bolus feeds with a 2 oz syringe directly into my son's stomach every three hours...this ain't your average mommy day. On top of that, I have to do all the "normal" mommy things for my three year old. We don't get out of the house much. My errands are now run after 8pm, but at least the grocery store isn't crowded. ;) Now I'm not saying this in a my life is harder than your life or please pity me - I'm just saying: MAN I MISS MY HUBBY! :)
I have taken pictures (on request on my sister Audrey) of all the aspects of Matthew's day. She wanted to better understand what I was saying when I was talking about things. I am going to share a picture commentary of a "day in the life of Matthew" either tomorrow or Friday. As you can see by all that above stuff that is written, I don't have much free time during the day. Matthew is napping and William is playing cars (what else is new?). But I have to go to the computer downstairs in the office to download photos instead of the laptop on the coffee table...so it takes time getting down there. I promise by this weekend at the latest.
I hope that by doing this, it makes my son seem less fragile actually. When you see all of these tubes and ports and catheters - it really freaks people out. Myself included when he first got them! I just want to familiarize people with a new way of life. Maybe help someone else to understand or empathize with other special/medical needs children. They will not break (they are actually stronger than any other children I have met!). They are not different, at least no more than any child is from any other child. They just have a unique way of doing things. Their just extra special.
Monday, June 8, 2009
A mom is picked.
This was sent to me in an email. I wanted to share with all the other moms out there that have been "picked". Especially a certain mommy in Atlanta whose precious boys need our special prayers. This one is for baby E's mommy. :)
God Chooses Mom for Special Child
written by Erma Bombeck, published in the Today newspaper
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of special needs children.
Did you ever wonder how mothers of special needs children are chosen? Somehow I visualize God hovering over Earth selecting his instrument for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint Matthew."
"Forrest, Marjories; daughter; patron saint Cecilia."
"Rudledge, Carries; twins; patron saint.. give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a special needs child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," God smiles. "Could I give this child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it like she does everything else thrown at her."
"I watched her today. She has that feeling of pride and independence. She'll have to teach the child to live in a world she doesn't control and that's not going to be easy."
"But, Lord, I dont think she her faith in you is very strong."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is the woman I will bless with a child that seems less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it."
I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in mid air.
God smiles.
"A mirror will suffice."
God, I am eternally grateful you picked me to be Matthew's mom. I can't believe how lucky I am. And to be doubly blessed with his older brother too...wow! I am humbled and I am ready for the next challenge as you see fit.
God Chooses Mom for Special Child
written by Erma Bombeck, published in the Today newspaper
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of special needs children.
Did you ever wonder how mothers of special needs children are chosen? Somehow I visualize God hovering over Earth selecting his instrument for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint Matthew."
"Forrest, Marjories; daughter; patron saint Cecilia."
"Rudledge, Carries; twins; patron saint.. give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a special needs child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," God smiles. "Could I give this child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it like she does everything else thrown at her."
"I watched her today. She has that feeling of pride and independence. She'll have to teach the child to live in a world she doesn't control and that's not going to be easy."
"But, Lord, I dont think she her faith in you is very strong."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is the woman I will bless with a child that seems less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it."
I will permit her to see clearly the things I see- ignorance, cruelty, prejudice- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in mid air.
God smiles.
"A mirror will suffice."
God, I am eternally grateful you picked me to be Matthew's mom. I can't believe how lucky I am. And to be doubly blessed with his older brother too...wow! I am humbled and I am ready for the next challenge as you see fit.
Tuesday, February 17, 2009
what they don't understand...
*please don't take this as "bitching" - just have to get it out of my system sometimes. Bear with me for a moment.*
I have a GREAT family, both by blood and marriage. They are constantly helping me out with either William or Matthew and even allow Ian and I some much needed alone time every once in awhile. I guess this should really make me happy, but it doesn't. I HATE, loathe really, asking for help. I won't do it, unless I'm sick and can't be near the boys. I'll just drown in a pit of very bad things, getting completely and totally overwhelmed before I pick up the phone. They do enough for me normally, and I don't want to use up my good graces by asking for additional things. But I also know that I can't do it on my own. Ouch - that actually hurts to have in black and white in front of me!
I've handled three weeks of a newborn by myself while Ian was in Oklahoma for the Coast Guard...because when anyone thinks ocean...they think Oklahoma! I've managed stomach viruses, hurricanes, and migraines while tending to William at the same time Ian was tending to the NC coastline. I've moved our entire household (4 times in 5 years): canceling and setting up utilities, arranging for free help (well, help that works for food and beer), packing up, and handling all the paperwork for mortgage loans, insurance and rental agreements. I pay the bills and manage the finances. I grocery shop and meal plan for the week, while cutting coupons nightly. I walk the dog...ugh! And I've always kept my head above water...until recently.
Now add to that - Matthew. I hate to put that like he is a burden...IT'S NOT HIM! It's just the medical stuff. So, now I make appointments for hemodialysis, clinic, WIC, pediatric well checks and various specialists (like urology at the moment). I'm on the phone with insurance companies, (all three - tricare, medicaid and medicare) pharmacies, nurses/doctors, the Sherwood Clinic for his RSV shots, Bartow county health department and any other "problems" that may arise unexpectedly. I'm running to hemo twice a week (which is really a blessing as it could be three times), but it takes me nearly two hours in the morning to get down there and an hour to come back. Not to mention the 3 hours we are there getting dressing changes, vitals and our actual hemo. I'm exhausted on those days, more so when we have a certain nurse! Sometimes I don't leave his bedside the entire time I'm there. I need to start bringing some snacks in my purse so I don't get a head ache...especially since I never know who my nurse is going to be!
Matthew luckily is a very happy baby, but you can only expect so much out of him when he wants to roll over or move around and he has to be completely still because his hemo cath is so freakin positional! He loves the dialysis unit, with the toys, the people, the visitors...he loves it so much...he doens't want to miss a minute. Meaning, he doesn't sleep! Imagine a baby going from 6:30am when I have to wake him up to get in the car (for our 10am appoinment) until 2pm when we are ready to leave...with out a nap. Can you say ornery!! He loves to move! This is also an issue for xrays. Little man gets sand bags put on his legs, needless to say, he DESPISES that. But with all of this, I'm also emotionally drained, trying my hardest to keep him happy. If he is happy, I can handle anything. It's amazing how much of my feelings are dependent on my children's happiness!
So, when I finally get some time to myself or some time alone with my hubby, I'm still a mess afterwards. Two hours just doesn't erase a year of stress. It helps!!! Builds my reserves back up, but they will deplete. When Ian is being a sweetie and getting up at night to do the feeding tube change outs, I still wake up tired. Yes, he gets up and does all the work, but I hear the alarm, I wonder if he remembers all the steps, I hope William didn't get woken up with the loud beeping. So, I still end up being tired in the morning...not to mention...I'm William's cuddle buddy in the morning (which I wouldn't trade for all the sleep in the world).
So even though I do get help and I am eternally grateful, please don't expect a miracle in my mood, exhaustion, worriedness or whatever. It doesn't mean you didn't help me out, because you did more than you'll know. It just means that I have a lot on my plate and the garbage diposal is backed up.
I have a GREAT family, both by blood and marriage. They are constantly helping me out with either William or Matthew and even allow Ian and I some much needed alone time every once in awhile. I guess this should really make me happy, but it doesn't. I HATE, loathe really, asking for help. I won't do it, unless I'm sick and can't be near the boys. I'll just drown in a pit of very bad things, getting completely and totally overwhelmed before I pick up the phone. They do enough for me normally, and I don't want to use up my good graces by asking for additional things. But I also know that I can't do it on my own. Ouch - that actually hurts to have in black and white in front of me!
I've handled three weeks of a newborn by myself while Ian was in Oklahoma for the Coast Guard...because when anyone thinks ocean...they think Oklahoma! I've managed stomach viruses, hurricanes, and migraines while tending to William at the same time Ian was tending to the NC coastline. I've moved our entire household (4 times in 5 years): canceling and setting up utilities, arranging for free help (well, help that works for food and beer), packing up, and handling all the paperwork for mortgage loans, insurance and rental agreements. I pay the bills and manage the finances. I grocery shop and meal plan for the week, while cutting coupons nightly. I walk the dog...ugh! And I've always kept my head above water...until recently.
Now add to that - Matthew. I hate to put that like he is a burden...IT'S NOT HIM! It's just the medical stuff. So, now I make appointments for hemodialysis, clinic, WIC, pediatric well checks and various specialists (like urology at the moment). I'm on the phone with insurance companies, (all three - tricare, medicaid and medicare) pharmacies, nurses/doctors, the Sherwood Clinic for his RSV shots, Bartow county health department and any other "problems" that may arise unexpectedly. I'm running to hemo twice a week (which is really a blessing as it could be three times), but it takes me nearly two hours in the morning to get down there and an hour to come back. Not to mention the 3 hours we are there getting dressing changes, vitals and our actual hemo. I'm exhausted on those days, more so when we have a certain nurse! Sometimes I don't leave his bedside the entire time I'm there. I need to start bringing some snacks in my purse so I don't get a head ache...especially since I never know who my nurse is going to be!
Matthew luckily is a very happy baby, but you can only expect so much out of him when he wants to roll over or move around and he has to be completely still because his hemo cath is so freakin positional! He loves the dialysis unit, with the toys, the people, the visitors...he loves it so much...he doens't want to miss a minute. Meaning, he doesn't sleep! Imagine a baby going from 6:30am when I have to wake him up to get in the car (for our 10am appoinment) until 2pm when we are ready to leave...with out a nap. Can you say ornery!! He loves to move! This is also an issue for xrays. Little man gets sand bags put on his legs, needless to say, he DESPISES that. But with all of this, I'm also emotionally drained, trying my hardest to keep him happy. If he is happy, I can handle anything. It's amazing how much of my feelings are dependent on my children's happiness!
So, when I finally get some time to myself or some time alone with my hubby, I'm still a mess afterwards. Two hours just doesn't erase a year of stress. It helps!!! Builds my reserves back up, but they will deplete. When Ian is being a sweetie and getting up at night to do the feeding tube change outs, I still wake up tired. Yes, he gets up and does all the work, but I hear the alarm, I wonder if he remembers all the steps, I hope William didn't get woken up with the loud beeping. So, I still end up being tired in the morning...not to mention...I'm William's cuddle buddy in the morning (which I wouldn't trade for all the sleep in the world).
So even though I do get help and I am eternally grateful, please don't expect a miracle in my mood, exhaustion, worriedness or whatever. It doesn't mean you didn't help me out, because you did more than you'll know. It just means that I have a lot on my plate and the garbage diposal is backed up.
Sunday, June 29, 2008
Pity Party
Bad things happen...to everyone. What is "bad" for one, is a blessing for another. The word is getting around to some of my "aquaintences". Naturally, my friends have been in the loop with my high risk pregnancy, but I didn't feel the need to share all the details with everyone I have ever talked to before. Now they are springing up from the ground...I might not have even talked to them in years. It's nice to be thought of and I love the extra prayers for Matthew, but spare me the "poor baby, poor mommy" outlook.
Yes, I know...we have LOTS of challenges in the future and the future itself is very uncertain. The nephrologists has given us the statistics of Matthew even making it two years of age and they are not good. But I will NOT let this get me down. Nothing is "bad" to me. Bad would have been if the doctor's didn't do diddley and I never got the chance to even hold him. Bad would have been losing him before I even got a chance to know him. Bad would have been listening to Satan and aborting him when the doctor's told me to...that actually would have been evil.
I have so much to be thankful for and I'm aware of it daily. On every trip up to Scottish Rite I see so many children with terminal diseases like my son...but my son's is treatable...he just has to hold out long enough for the treatment. Many of these children's diseases are not. You pass their parents in the hall, the kids are being pulled in little red wagon's because this is the only way they are allowed outside of their room. Some are too weak to even sit up and look around, they are propped on pillows and bundled in blankets, with the other parent following the wagon with their monitor or IV stand. Daily we see families leaving with tears on their cheeks and red eyes. My husband and I leave hand in hand with a smile on our lips and a prayer of thanksgiving in our hearts because we had one more day spent with our son and he is doing SO well.
I don't know why this happened to our family and our son. Why God decided we should be the parents of such a special little boy, but I accept it with open arms. I am ready to learn why we were chosen. I am prepared to have my eyes opened to whatever has blinded me in the past. I am eager to start this journey with my family and loved ones. I am willing to give my son part of me so that he may live that much longer...though I will request a lot of pain killers after the surgery. ;)
So please, don't feel bad for us, we are truly blessed in our little family. Matthew is strong and so are we...we have God on our side. Only have tears of happiness that he is doing well, only have words of praise that God has given us such a special son, and only offer words of support and thanksgiving. The only thing in all of this that hurts is the doubt and gloomy thoughts of others. Please be happy for us, we are thrilled with our new arrival!
Yes, I know...we have LOTS of challenges in the future and the future itself is very uncertain. The nephrologists has given us the statistics of Matthew even making it two years of age and they are not good. But I will NOT let this get me down. Nothing is "bad" to me. Bad would have been if the doctor's didn't do diddley and I never got the chance to even hold him. Bad would have been losing him before I even got a chance to know him. Bad would have been listening to Satan and aborting him when the doctor's told me to...that actually would have been evil.
I have so much to be thankful for and I'm aware of it daily. On every trip up to Scottish Rite I see so many children with terminal diseases like my son...but my son's is treatable...he just has to hold out long enough for the treatment. Many of these children's diseases are not. You pass their parents in the hall, the kids are being pulled in little red wagon's because this is the only way they are allowed outside of their room. Some are too weak to even sit up and look around, they are propped on pillows and bundled in blankets, with the other parent following the wagon with their monitor or IV stand. Daily we see families leaving with tears on their cheeks and red eyes. My husband and I leave hand in hand with a smile on our lips and a prayer of thanksgiving in our hearts because we had one more day spent with our son and he is doing SO well.
I don't know why this happened to our family and our son. Why God decided we should be the parents of such a special little boy, but I accept it with open arms. I am ready to learn why we were chosen. I am prepared to have my eyes opened to whatever has blinded me in the past. I am eager to start this journey with my family and loved ones. I am willing to give my son part of me so that he may live that much longer...though I will request a lot of pain killers after the surgery. ;)
So please, don't feel bad for us, we are truly blessed in our little family. Matthew is strong and so are we...we have God on our side. Only have tears of happiness that he is doing well, only have words of praise that God has given us such a special son, and only offer words of support and thanksgiving. The only thing in all of this that hurts is the doubt and gloomy thoughts of others. Please be happy for us, we are thrilled with our new arrival!
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