This morning I got the call I have waited for, for near on five years. My student with an incurable, muscle wasting disease had finally given up his courageous fight aged twelve. We'll call him Sea for the sake of giving him a name and protecting his family...
The thing with teaching children with special needs - medical, physical, mental or a combination is that you form a greater bond with them. Don't get me wrong - I formed a bond with all the children I taught, but when you are rooting for a ten year old to say "mamamamama" it's a different playing field.
It colours my parenting, I believe that Monkey can achieve anything because of those children I taught. Not because he is able-bodied, not disabled, but because they succeeded. They reached milestones so minuscule that to an outsider it wasn't even a yard-stone... but for them, their parents and me, it was huge. I believe that I and Stud1 are the only people who will champion our son. I saw many parents who were waiting for someone to save them from the diagnosis. That help never comes. You are ALL your child has.
You learn to love their idiosyncrasies. Whether it's the spitting, the hitting, the biting, the hugs, the giggles, the way they ask you to say mmmmmm so they can feel the vibrations through your skull (try it - put your hand on your head and say mmmmmmmm), the tears, the tantrums, the swearing, the head banging... It's all communication and it's all them. The same with your child, love their idiosyncrasies.
Sea loved jokes, even when his movement was limited to blinking. You could make him laugh by flying a Super Man toy over his bed and pretend farting. He loved stories, animals and meeting new people. He didn't get to do this very often as he was bedridden and his immune system was too weak to risk many trips away from home. His smile could light up the room. Sea loved his brother and sister and mum. He loved sunlight on his bed. He loved it when people hooted as they drove by his house. That is going to be a hard habit to break!
Somedays it was even possible to believe that he would get better and that the painful convulsions and twisting of his muscles were just a memory. Now they are.
I am stuck in the space between relief for him and his family, sadness, and the need to protect Monkey from anything that could hurt him...
Thank you for reading this.... I needed to get it out.
RIP T M... you are free, go find your wings.
I'm glad you went with your gut and posted this. It is an incredible testimony to Sea and his family. He was worthy of love, care and affection. He was worthy of this post. He was worthy just as he was.ReplyDelete
And as a continuing tribute to his family, when you feel the time is right, I think it's important to go back to tooting as you pass his house. It says "I have cared for you and still care. I care for your family and the loss they will feel every day".
It's not wrong in any way to feel relief for a child who's suffering has been brought to an end. He's in a much better place now.
(((((((hugs)))))) for you my friend as you process his passing and your other grief.
Oh my gosh. You've gone and made me cry at work. What a beautiful post and an amazing tribute. He sounds like a special boy and I imagine his family must be grieving his loss :(ReplyDelete
Life can be so cruel!
Having been a Teacher Aide for "Sea", I feel so many of the same feelings Cyndi! I will never forget his smile or the way his eyes would light up when he recoginsed me. I am so pleased that his is at finally peace and free from the constant pain. I feel so blessed to have played a small part in his life and will be ever thankful for the lessons I learned from him. RIP "Sea" xoxoxoReplyDelete
As a mother of a child who is sick with an undiagnosed weight loss condition, this brought me to tears. Thank you for sharing. My heart is with Sea's family and friends.ReplyDelete
Oh, I can't stand this...I am so sorry for his family.ReplyDelete
I don't know what to write, only to say Sea sounds amazing and very fortunate to have such love and care in his life. My heart goes out to his family and you. May he rest peacefully now xReplyDelete
Thank you all for your kind words. Sea was a very special young man who was loved by many, many people.ReplyDelete
It's been a rough week for many people and I hope that his family will find peace for the next stage of their lives.