Crawling Out of that Big Dark Hole

It's been a few weeks since a blog update. I've sat down a few times to write, knowing I should update, but I have had zero motivation or inspiration. I've just felt exhausted. Mentally and sometimes physically.

From the beginning, I said I'd keep it honest here on the blog, and I'll be keeping that promise.

I've been in a mental "big dark hole" for the past few weeks. Not a depression, but my thoughts have definitely been consumed with Tennyson's progress - or lack thereof. Since her surgery, we are dealing with huge regression in terms of her muscle strength. She can no longer bear weight on her legs, her head control is poor, and her reflux is back with a vengeance (which means I get to clean up throw-up daily). In the long run, once we get her strong again, the range of motion in her hips and legs will be wonderful for her, but it's hard to see the light at the end of the tunnel when a years worth of work is out the window in a matter of weeks. We are starting over, and it feels like we have a never-ending mountain to climb.

It didn't help that she had six appointments in the last week and I had to explain over and over again to each one of her doctors where she's at developmentally and why she has regressed. It drained me. She saw Genetics (and we found out that Tennyson is still the only little girl in the world documented with her rare chromosome abnormality), Pediatric Surgery (to get her g-tube changed), Orthopedics (because one of her legs is longer than the other due to "pelvic obliquity" - a topic for another day), Neurology and GI (because she was due to be seen), and she had a weight check with Nutrition (she didn't gain or lose anything -not good, not bad).

I can usually carry on and not let the negative feelings consume me. I think I've developed a pretty thick skin when it comes to the slow progress and accepting the cards we've been dealt. But lately, I've let it get to me. When I start to feel negative, I start to think negatively. Everything feels harder. It's a slippery slope that dumps me into a "big dark hole".

I get irritated with the stares we get in public and the strangers who ask annoying questions. I want to say to them, "she's just a little girl!" or "She can understand what you are saying!" (and other really witty, sarcastic things that I would never actually say...). The kids in her class at school have more manners than half the adults we come in contact with while we are out and about.

I went to pick Tenn up from school one day this week and she was sitting in her teachers lap playing with all the little girls (so cute!). One of them came up to me and showed me a sign that had her name on it. I asked her if she knew the names of the letters in her name and she did! It was one of those moments that made me go, "Holy crap - that's what three year olds can do!? This kid is a genius!".

It made me wish Tennyson could do more. It made me sad that she is so far behind - years behind her peers. When I told my Husband how sad I was about it, he said gently, "It's only going to become more obvious the older she gets." I know he's right. He can say those things and somehow it's okay because we're in this together. He adores Tennyson for Tennyson and doesn't compare her to any other kid. He thinks it's awesome she gets to participate with her peers at school and they work hard to adapt all the activities so she can be part of them. From the beginning, he has seemed to accept it all easier than I ever have.

I can't fix the damage done to Tennyson's brain. I won't deny I wish I could. I wish I could have a two way conversation with my daughter. I wish she could tell me about her day, rather than having to ask her teachers or read it in her communication log from her therapists.

Then I read "The Mom I Would Have Been" by Dana Nieder of the blog Uncommon Sense. Definitely worth taking the time to read! She put into words (better than I ever could have) exactly how I was feeling. Sometimes knowing you aren't the only one feeling the way you do is just enough to make you feel okay again. So, I'll work on acknowledging  the feelings I have and then get myself out of this stupid big dark hole.

Amy

tennsense@gmail.com