He was a gorgeous 8 1/2 pound baby boy full of vim and vigor.
His Apgar scores were almost perfect. He was pink. He was pretty.
He had a very serious Heart Defect called Hypoplastic Left Heart Syndrome.
Shortly after his birth he had a stroke, a common side effect of HLHS and was diagnosed with Mild Cerebral Palsy.
He was 3 years old before he could walk. He didnt talk until he was almost that same age. he has a weakened left arm and left leg from his stroke.
He has been in Physical and occupational Therapy since he was 1 year old. He was in speech therapy for 2 years.
Fast forward through 3 open heart surgeries to help his body compensate for only having half a heart.
Fast Forward through illness, fatigue, chronic colds, coughs and irritability.
Fast forward to heart failure at the age of 5, in Chattanooga TN while we were on vacation 350 miles from home.
Fast forward through airlift to NC and 90 days waiting in the hospital for a suitable organ, hooked to an IV keeping his deteriorating heart going.
He started Kindergarten in UNC Childrens Hospital, a room on the 7th floor with a teacher named Ms Judy. Tethered constantly to an IV Pole, taken up in a wagon, only able to do 30 minutes a day because he would get so tired.
For a year following his transplant, we were prisoners in our home. He couldnt go to school , with his new heart there was no way he could be around sickness and germs that school would most certainly throw his way. We couldnt go to church very often because of all the germs, colds, strep, chicken pox etc that goes through the primary like wildfire.
During this time a traveling teacher came to our house once a week to drop off homework papers, and kind of work with peter.
We decided to have him go to school the following year and retake Kindergarten instead of going to first grade. this would give him a chance to socialize, make friends, learn the rules and figure the whole school thing out.
He was a year older than most of his classmates. But it was the perfect decision.
During this time I did not falter. i was fine with everything. I gave Peter everything he needed to recouperate, build his body and mind. Dr visits every 1-2 months, strict medicine schedule, working with him on everything he needed to be doing physically. i basked in the glow of "oh my goodness, you are so strong, I just dont know how you do it". I would respond with my know it all war-zone mom voice "oh you do it because you have to." I was so brave...so courageous...so strong. I was amazing. I was supermom.
Once he got to 1st and through the first half of 2nd grade he started Special Education. It was 30 minutes a week, just to give Peter a place to catch up on any school work from the week, or see if he needed any extra help. Plus without some form of special education classes he could not be on the educational plan and receive physical and occupational therapy at school as well. Plus it was 30 minutes a week to make sure he was keeping up. No biggie.
then in mid- 2nd grade and the begining of this 3rd grade year his teacher and special education teacher and school psychologist said Peter needed more help. he had learning disabilities and was behind his peers in class. They recommended an hour of special education a day. he would still be in a regular classroom with his friends, but just go see his special ed teacher for an hour during the day. They said things like "Peter learns differently" and "Peter retains information differently" and "Once he gets it he gets it..he is just a little slower in fully grasping the concept". They told me this special education was really to help Peter learn to organize a little better, to really in depth review and help him learn in a way that was more condusive to his mental capabilities.
Want to know what I heard?? YOU...BROKE...YOUR...SON. Sounds silly, huh? I was supermom. My back was numb from me patting it so many times. Surely Supermom can fix this. Surely MY son didnt need special ed. I was in denial. But numbers, testing and schoolwork dont lie. I was heartbroken. I blamed myself.
Was it the aspirin I took during my 2nd trimester?? Was it the Ny-quil I drugged myself with for a week straight before i found out I was even pregnant? Was it the bottle of coke I used to drink once a week to help settle the morning sickenss stomach during those first few months?? Somehow this was Super moms fault and supermom could fix this. But even this is not something that I can fix. It is something he needs.
Being in Special Ed has helped him. Even I can see that. But why cant I accept it?? Why is it so hard for me?
Why is it easier for me to revolve my entire world and schedule around him for medical visits, biopsies, hospital stays, therapy etc...but saying he is in special ed is like swallowing a mouthful of coals??
When people tell me "Oh you are so strong" I WANT to say "yeah?/ Want to know that I sob into my pillow every day after they go to school?? Want to know that I feel like an Utter failure because I CANT HELP MY CHILD BE LIKE OTHER KIDS??!!"
He comes out of school with his classmates who are a year younger than he is. he is the smallest one.
He wears leg braces and a hand brace. He is much slower when it comes to walking and running. He works extra with the PE teacher to work on stamina and endurance and distance. He is the size of a 6 year old. i have a hard time remembering he will be 10 in just a few short weeks. In fact his 6 year old brother is now bigger than he is.
None of this bothers me. he has good friends who love him, help him and are his champions. They defend him and dont let people give him a hard time. I know I dont have to worry about that.
Why do I feel like a failure? Why am I sad, and depressed and ANGRY?? Why is being stretched to the limit with his physical needs so much easier for me than admitting he needs help mentally?/ Why is admitting he has learning disabilities this gut wrenching, harrowing trial for me??
Why is it so unfair? Why did Peter, my sweet sweet Peter have to be afflicted with this? Has he not gone through enough?
But then I look at him. And he is happy. He has friends. He has teachers and administrators in that school who ADORE him and hug him every time they see him. he makes people smile. his teacher told me that Peter makes her smile every single day. He is the sweetest boy and just warms her heart.
That is his gift. He can make everyone around him love him.
So is this really HIS trial??
No. He could care less if he went to Special Ed or to a room full of crocodiles. By the end of the day those crocodiles would be buying him toys just because they love him. dont ask me how he does it.
This is MY trial. This is something I have to get over. This is something I will have to struggle with. No matter what Peter does and where he goes, he will be loved and helped and will find a way to get it done.
I will be the one bristling and fighting and not wanting to relinquish the control. Slowly I have gotten more used to the idea.
i can see that being in Special ed has been a blessing. It has taught me that I can give up control. I can just accept the fact that there are things I cannot change. There are things I have ZERO CONTROL over.
I can cry, and so, and pray and bargain. The fact is I am the one who needs to get over it.
I have a difficult journey ahead, but all I ask is patience, time and understanding.
My name is Sarah and i have a very special son who has special needs...
***Photo was taken by Rebecca Taylor. These were pictures from a shoot she did for me for peters cover photo on The donate Life america national newsletter
peter and devans story is page 10..
3 comments:
Sounds like you know exactly what to do and why you have to do it.... but are afraid to do it. To let go and accept that there are some things in his life that you don't have anything to do with. This is all Peter's thing. His trial and tribulations in his life and when he overcomes this too like he's overcome everything else he will be an even better man for it as he gets older. You are raising one HELL of a good person there Sarah..... you are doing a perfect job of it too. Yes it's hard for you to see him go thru it and yes it may get harder but maybe he's there to teach you something about yourself and about people in general. That's also his purpose in life ya know? To show you that no matter what life throws at you... you can overcome it with a smile and come out on top anyways.
I think he's awesome and so are YOU!!
I think Peter is very lucky to have a mum like you
x
Anyone who has come in contact with either of you are better for it. Seriously. You're both great people who are always inspiring the rest of us.
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