Another Loss

Sometime in the last few weeks, Grayson stopped sucking his thumb. And not because he wanted to, or because he outgrew the habit. Because he can’t suck his thumb anymore. When he gets tired or hears a song he loves, he gives a thumbs up to the air and brings his thumb to his mouth, but the coordination between his tongue, lips and thumb is just…gone.

It’s heartbreaking.

And then there have been a few times where his thumb makes it inside his mouth, and his teeth clench down and he bites himself- hard. And because his brain evidently doesn’t know how to tell his teeth to let go, he screams in agony, all while still clenched on that thumb.

Our goal for Grayson is his comfort- to make his life as happy and pain free as we can. The loss of this self-soother is a huge loss.

Today when I picked G up from school, his teacher told me she’s noticed he doesn’t chew on his chew toys anymore. I’m heartbroken but I’m also scared. If he’s lost his sucking and chewing reflexes, what’s next? Swallowing?

I had a meeting with Grayson’s physical therapist today and we ordered him some equipment: a stander, a neck collar because his head is so floppy, and a “real” wheelchair. We’ve had a medical stroller for a year and a half now, but it’s no longer offering enough support to a boy who is getting bigger but not stronger. We also discussed what kind of chair I should get for hanging out around the house, because the big Bumbo we have just isn’t supporting him anymore.

A week from today Grayson will get his casts removed and be fitted for new AFOs that will hold his feet and ankles in position, even though he will never walk on them. The week after that we have an appointment with his pediatrician where I will ask her to write a letter of medical necessity to get diapers covered, because he will never be potty trained.

I hope he knows, really knows, beneath the body that betrays him and won’t really allow him to show us that he knows, that he is loved. So loved. I don’t think there exists a boy who is more adored. There are no answers, nothing that really makes it any better. But there are moments like this, when his sister, who has no filter or restraint in her adoration of her brother, greets him in the morning with a squeal and a hug.

And yeah, that makes it a little bit better.

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13 thoughts on “Another Loss

  1. Oh Elizabeth! I wish I could hug you right now! I know he knows he is loved…but I'm sorry that he is losing ground and sorry you even have to wonder if he knows. Even if he can't tell you, he knows! Love you, sweet friend! Will be praying for you for sure.

  2. Oh man. The heaviness of the situation is so overwhelming. I wish there was a way to make this even a tiny bit easier to cope with for you. Just know that I include Grayson in my prayers every night, and mourn these things with you.

  3. Just know that there are things that Reagan has lost, but she has gained in other areas! And I know about the biting…Reagan's got teeth marks on her arm right now from her last bad cycle! As far as chairs go, I HIGHLY recommend the special tomato mobile sitter! Reagan spends 80% of her time in it! We love it!

  4. I often feel at a loss in what to say to offer you comfort. I'm angry for you, for G, that you all are going through this. And profoundly sad. But I don't ever doubt how loved your beautiful boy is. And though he can't say with words, I have no doubt that he knows how loved he is. I also have no doubt that he loves you back with equal fierceness.

  5. Oh goodness, so sorry for the “loss” of his soothing thumb. He Absolutly knows that he is very loved and cared for. Love the pictures of them together, so sweet!!!! Xoxo

  6. If we can feel your love for Grayson, I guarantee he can! He can feel the love in your tender touches, and in charlottes rough housing. 😉

    I think of you all at least once a day, many times, actually. My heart holds you all close.

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