Life has inserted itself, kids activities, teaching, new waiver programs, field trips, small procedures.
So much... LIFE.
We went from living in a hospital, our family split, states apart. To being home under one roof learning to take care of a fragile baby, teaching him to eat, to sit. Learning new diagnosis every few months, just tallying new things of possibly "cant" to making it work in his own way.
Now we have a courageous, opinionated, full of personality, 7 year old who attends school daily. He makes everyone in the room smile when he walks in. His happiness is contagious.
So why am I writing today?
Why now, out of everything?
I attended Waylons IEP meeting on Tuesday where we went over his strengths, his goals and what he still needs to work on. Im sure this probably seems like I am leading this piece into yet another "how the school failed my son, how they didn't follow his IEP!". But I assure you its not.
Waylons team of teachers, therapists and aides, is truly amazing. They go above and beyond in finding ways to help him with everyday things.
Waylon is a complex kid.
Ive said that so many times that it just feels redundant and im sure like an "excuse" at times.
Tuesday Waylons Special education teacher told me that she feels Waylon will not be a manual writer. I know this doesn't seem like much. Like "okay, he is in first grade. What does this even mean for a 7 year old?". A lot.
Due to Waylon having multiple diagnosis, he had multiple things working against him everyday. Things that other people take for granted. Waylon is struggling. This doesn't mean he isn't intelligent. But he does have a lot working against him. Just looking up at the board then looking down at paper to copy from the board is challenging due to his cortical visual impairment, paired with his Cerebral palsy causing fatigue while he tries to engage many muscles to just SIT in a chair without falling out. He loses his place on his paper and the board and then has to start over, or it takes a long time to complete a task because he is going back and forth, then his brain, eyes and body tires.
Hes falling more behind as the year progresses and the curriculum advances. He then feels discouraged and down on himself because he is understanding his differences and what struggles come with them.
Because of all of this his team has tried out multiple things. Slant board to help him to see what hes writing better to fit within his visual field, light boards, enlarging everything the teacher is handing out or what is hanging on the walls. Enlarging vocab words and books. With all of these things, he is still struggling due to his complexity of diagnosis.
So they are now trying him out with assisted devices like a tablet, where he can zoom in and out on words, pictures etc on his own. He can highlight words to be read out to him when his eyes and brain tire and he mixes up letters due to his CVI.
Im so happy that there are advancements such as this to help him, and the many other children like him. Im ecstatic that he has an amazing team behind him that try their best to help him succeed in his own ways.
But its still a hit.
A hit to my momma heart. Knowing its another struggle.
We knew with many of his diagnosis that he would struggle academically, but no one could tell us just how that would affect him until we got to that bridge. We have seen small things along the way, with added diagnosis, it has helped in getting him interventions in school and the community.
But what we have seen hasn't been definites so to speak, for future, of things he wont be able to do.
I know he has overcome so much. I see it everyday. I am a huge part of why he is where he is.
I see the things that doctors told us he should NOT be able to do, that he does in his own way, everyday.
It doesn't mean, though, that I wont be upset when we hit a road block and have to take another path to make it work for him. I will change course any day if it helps him to progress, succeed and be happy. But it doesn't lesson the blows.
I take those blows with a smile on my face in front of everyone else. Saying to everyone else and my self " this is okay, we will make it work as we always do. Waylon will do it his way".
But when no one is looking, when the house is quiet with my babies in bed, and my husband is playing video games. I jump in the shower. My safe place, where I can let the warm water help to wash the day away. Where the water running over my face is masking the tears flowing from my eyes.
I remind myself " he is still here! He is fighting, you are fighting. He is doing things no one thought he would!".
And just like any grief, you endure the many steps to find peace. First I am resistant, then I am full of sadness. Another thing he has to fight through. Another NO. Another wall.
Then I get mad. I get mad that its ANOTHER thing. ANOTHER fight and tears. And I get pissed that its something else tacked onto him. Another task at hand.
Why?!?!?!?
Why does it have to be so hard for him?!?!?
Why something else.?!
Then I am upset that hes not JUST a heart kid. Not JUST a kid with cerebral palsy. Not JUST a kid with visual impairment or a major brain injury.
Its hard to fully engage and feel like other parents get it because he has SO many things going on. So much that affects the simplest of things.
I don't want to let his diagnosis be WHO he is, but they are a huge part of him. They all make him who he is due to the struggles he endures because of them. They may not fully negate every part of what he can and cant do, but they are a huge part of it.
I question everyday what his future will be like with all of these diagnosis. What will they mean for his life. We know some of it, we know the health matters that come with it, but there is still so much that we don't know. Like how much it will affect his quality of life. How hard it will make things in the future.
We are constantly on the edge of finding what he cant do and working around it in a way that he CAN do it and participate in his own way.
We would do it over and over again.
But its also exhausting. Mentally and physically.
Its the part less talked about.
When your kid is watching all of these kids skateboarding and he wants to get in on it, but he does well enough to just walk, let alone balance on a board and roll. And you see, the moment, when he realizes the difficulty of this task and his inability to do it the same.
You realize the look of inadequacy wash over his face. You hold back the tears from your shattered heart and you try to redirect him into something he can do.
Its a constant daily struggle. Protecting his heart and mind. I don't need to teach him about "failure" because he sees glimpses of it everyday.
I remind myself daily of the amazing things he does, to try and cross out his cants. I remind HIM of the things he can do, no matter how different he has to do them from other kids. I try to help him to embrace the things he can do.
Today I am looking back at the past few days alone during this Congenital heart defect awareness week and month, at the amazing things happening. The things happening because of him! Because of his struggles and endurance.
Watching his interaction with Kentuckys Governor Andy Beshear on Monday when we were blessed to be at the signing of the proclamation for CHD awareness week.... AMAZING
He walked into the room with such confidence and happiness. I know that I am doing something right by instilling these things into him.
