Thursday, December 5, 2013

An Unexpected Blow: Sometimes, size does matter.

"Life has a way of sending sucker punches our way." Yes, it does.

Remember those dreams I have? The ones where there is too much going and everyone needs something and I fail every single time? I lose track of which one I'm supposed to be doing something for or move on to the next kid, forgetting all about the one I was working on? Yeah.

Walter has a teacher that he had last year and every time we talk she mentions "last year." I want to growl at her, "woman, I was busy last year, back the hell off." but I can't even remember what happened last year. I don't know what I was doing. Sitting at Walter's band concert the other night, I was listening to the beginner band play thinking I remember when Walter was there. When he played that exact song. I remember how excited he was and how hard he practiced to get it just right. It was just yesterday... I watch my handsome boy walk onto the stage and take his seat. Is he in 7th or 8th grade? He's in 8th. What happened to 7th grade? Where did it go? I don't remember it. Where was I?

I was fighting for Goofy. In fighting for Goofy, I missed more than I should have.

Today, Alex had a doctor's appointment. I went in feeling like a failure because this appointment was scheduled after I got a letter from his insurance saying he was over-due for his yearly checkup. I knew that had to be wrong because I schedule checkups around their birthdays so I never forget. I schedule an appointment every year. I'm careful because I am so forgetful. I called the office and he hasn't had a yearly checkup since May of 2011. How did that even happen!? I schedule appointments all the freaking time. We are always doing something with some sort of doctor or specialist. So, I go in feeling like a failure already, expecting the usual. You know, yearly checkups are pretty routine- height, weight, vitals, exam, shots and you're out of there. Not today.

The doctor is surprised that it's been so long because of all of my kids, Alex is there the most. Hell, I schedule appointments as soon as his nose starts running. He can't tell me what's wrong, and I don't want to take any chances. So, the doctor was surprised but also understands how it could have been missed. (probably because he missed it too, but I'm going to pretend he was trying to make me feel better.) The next surprise was a big one. The doctor is looking at Alex's growth chart, and sees that Alex has not grown at all since his last checkup. At all. He's in the 5th percentile for weight and the 1st percentile for height. His small size has been tugging at me the past few months. Goofy is almost as big as he is and Walter is huge... but I keep expecting a growth spurt any minute now.

He hasn't grown. at all. How is that even possible? I changed his clothing size with his age. They fit. How could they fit if he hasn't grown? How could he have not grown? What does that even mean? The doctor's concerned that there may be a thyroid problem. He wants to do some tests but first he needs to finish the exam. He checks Alex's ears, his mouth and although we're cavity free for the moment (*shout out to his awesome OT for that one!*) that thing that's been nagging the back of my mind jumps out... his teeth haven't come in. He had oral surgery 2 years ago, I think. Why haven't his teeth come in? There are some that are halfway through and some that are just breaking the surface... the way they have for more than a year. Why did his teeth stop coming in? That could be the thyroid. He wants to run tests.  How did I not know there was a problem when his teeth didn't fully come in? Why didn't I see it for the red flag that it was? What else have I missed?

We walk over to get the blood work and the sign in sheet asks what we are there for. Alex is sitting nicely in his seat, the girl is wandering close, I'm flipping through a stack of papers to see what we are there for. I see orders for CBC with differential and TSH and an x-ray on his hand... celiac... I know that word... I'm standing there confused, trying to place the word, thinking it couldn't be what I was thinking it was, when a woman comes to help. She takes us to get registered and then another woman comes to get us. We go get the blood work, which was horrible. He cried. I wanted to cry. The girl played with latex gloves and stickers. We went to get the x-ray and I stood there, looking at the picture of his left hand and wrist, looking at these lines on one of the bones in his wrist and I wonder if they are left from where we broke his wrist trying to prevent a "fall" when he threw himself to the floor.

Luckily, we got so wrapped up in tests that we forgot his shots so we had to go back and get them. Standing there, getting Alex prepped for the shots, signing my consent, I asked the doctor, "You ordered a test for celiac? Isn't that.." "...gluten..." he finishes for me. "But he was already tested for celiac," it was a while back so I'm trying to remember if there was blood work involved when he tells me that doesn't matter. He can not have celiac one day and then something happens, they get the flu or something, and then they have celiac. I asked him what he ordered tests for. To check his thyroid, he says. Ok, but why? Because he's not growing. But is there something I can google? Not until the results come in, he says. The results will be in Monday or Tuesday and then he will call me and we'll see then if we need another appointment.

I've worried every moment since. Trying to think it though, figure it out. Why wouldn't he be growing? What if he's malnourished? How could he be malnourished? He eats all the freaking time. Breakfast at home, breakfast at school, lunch, afternoon snack, snack at home, supper, snack before bed. During the summer, we were going through 6 boxes of Fruit Loops per week- and that's between meals where he always clears his plate. Now we're down to about 2 since he's back in school, but still... that's a lot of freaking food. Then I think... what if it's the Fruit Loops? Did I give him too many? Did it cause some kind of problem? I know his obsession is a little...excessive but he was still clearing his plates. I gave him too many. I broke him.

What if it's calcium? What if it's because I took him off of the milk? He still gets milk products, he just doesn't drink milk. What if that isn't enough calcium? Could that be why he isn't growing? I should have gotten vitamins. That was stupid.

Or, worse, what if it's not something I did? What if there is something wrong? What if it's something I can't fix? I'm telling you now, if the doctor doesn't give you a word to google... don't google the tests. That gives you all kinds of scary options that are way worse than Fruit Loops and milk.

Still it comes back to where in the hell have I been? What have I been doing that I don't even notice that my kid has not grown in years? Is what I've been doing even necessary? There's still the question of how much of my Goofy One's problems are my fault. If the Goofy One doesn't get an IEP this year, do I keep fighting? At what cost? How do I even decide which one needs my focus most? How do you prioritize your children's needs? How do you handle them all when there are just too many? I should have put more effort into teaching those brats to take turns.

Today, all I have are questions. The answers won't come until early next week.


  1. I am so sorry for your inner struggles. I have been there and now try to preach to everyone that you have to take care of you so you can take care of the rest. They show us examples of warrior moms but don't talk about the price we pay to be that mom. I don't want to be an autism mom any more. I want to take much better care of me so I can take better care of Julie. She deserves it. My two goofy ones with their egocentric world won't notice but Julie and I sure will. I hope you can find a way for you to take care of you and although scary, things for alex will fall onto place. I imagine an endocrinologist is in your future. I am thinking of you.

  2. I have no words, sweetie. But you know Im always here for you.