I’m Still Here

There is so much going on in our lives right now, but in the past week, I just haven’t felt compelled to write. Usually writing is such an outlet for me, but right now, there are some things I’m just not ready to write about. I’ve been processing information in my head and still am not sure how I feel about a lot of it.

I haven’t been writing, but I’ve been reading- a lot. Heartbreaking stories of what other moms and kids are going through. Stories of chronically ill children- some born with their diseases, some that weren’t. This isn’t how childhood is “supposed” to be- kids aren’t meant to struggle with brain injuries, gastrointestinal problems, social and learning disabilities, and go through countless therapies and doctors appointments…but so many do. It’s heartbreaking, this world of special needs kids.

We had our MDCP evaluation Monday, and it’s looking like the chances are very, very good that Grayson will be accepted. Of course, we are thrilled, but I’ve been buried in paperwork since Monday, trying to get the ducks in a row so we can move forward. 

Grayson is doing ok- this hasn’t been the best of weeks and it hasn’t been the worst. He’s had a few episodes where he’s woken up from his nap screaming in pain and he won’t put any weight on his left leg- I’m really not sure what’s going on there. We also had his hearing checked again yesterday. The audiologist feels that his low-frequency hearing loss probably isn’t what is causing his speech delay. He’s still not saying any words, which I guess we can blame on his brain, since we can’t blame his ears.

Developmentally, I feel Grayson is stuck. Even with therapy, work we do on our own, and the supplements, I don’t think he’s any closer to sitting up on his own than he was months ago. He can scoot on his tummy, but 9 times out of 10, he won’t. He’s very quickly outgrowing his excersaucer, which is the only thing that entertains him without me right there for more than 5 minutes. April is our month with no doctors appointments, but honestly, I am counting the days until we see our geneticist and the Mito specialist (both next month). I need explanations, answers, and a plan.

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7 thoughts on “I’m Still Here

  1. Oh my gosh. So hard. Waiting is the WORST part. You want answers now, you need help NOW. Ridiculous that you can't get him in more quickly. The helpless feeling of just treading water and keeping your head above the water, trying to keep going with no goal… at least with a plan, a goal, some information… you can focus your energy and efforts, and feel like you know where you're headed. This in between BS is AWFUL and I'm so sorry! *hugs*

  2. Hang in there girl! Praying for answers, piece of mind and most of all for your little guys health. Hoping I get to make it to the supper club meeting this month. It was great meeting you!

  3. Hi there!I just wanted to let you know that I have now read your entire blog because I am inspired by your strength and Grayson's courage! I started out being curious how you went about getting him diagnosed, but then became so touched by your story that I just had to read it all. You have a terrific little guy – and he has a fantastic mom :)Happy spring! I'm glad you have a month of no scheduled doctor appointments – enjoy it!!!

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