Wednesday, February 10, 2010

on special needs, and sovereignty, and self-pity

I'm just going to fall apart here for a minute and sound like I'm indulging in self-pity, and then once it's done I'll decide if I want to publish it.
I am not one of God's "special parents", so equipped with grace and strength that He looked down from heaven and chose me to be the parent of a special-needs child. It just happened, and however sovereignty works and the reality of a fallen world and sickness and sin, we got picked.

Do we love our frustrating, beautiful, funny, and exasperating child? Of course. That doesn't change the fact that sometimes, rarely but sometimes, I wish God would have picked some other saintly carrier of peace and grace, who would know what the heck to do with this kid.

Today, we went in for his pre-admissions testing leading up to his tonsillectomy, etc. next week. It was super-routine, mostly me answering questions and them getting his weight and such. Until the end, when they had to pry open his mouth to check his throat. He had strep twice last year, and has become totally resistant to opening his mouth for anyone, which makes toothbrushing a bit of a challenge... anyway. She ended up using the tongue depressor for a quick check, and I mean like, 1 second and then she was done.

R2 has a tendency to tantrum when he is scared or hurt, and his fits are really, really loud and violent- to himself. So he went into one of these fits, and I was holding him on my lap and crossing his arms in front of himself, just trying to keep him from breaking his own nose or bruising his face. So then he started kicking himself in the ankle. I crossed my leg over his and held his leg still, and then he reared back and hit his head as hard as he could on my shoulder. Eventually, he slid out of my grasp and sat on the floor, with me still holding his arms, and slammed his head into the floor. I picked him up again. All this time he is screaming, roaring, snot running down his face and totally out of control. I was trying to stay calm and answer the doctor's questions, because there was still information that she needed. After about 10 minutes, she suggested that we finish by phone and I took him, kicking and screaming, through the entire hospital and back to the car. It was exhausting, and humiliating, and just beyond words. By the time we got to the car, he was done. I drove him to school, waiting for the moment when I could break down and cry this out.

These fits happen about once a week, and the only thing we can do is ride them out and try to keep him from really injuring himself. When it's over, we are completely drained of energy and usually, feel helpless to help him. Then he'll be sunny and beautiful until the next time.

So, no, I'm not specially equipped for this. I am just a normal, brokenhearted, weak mommy, trying to love my kid.

In other news, if you haven't given toward Rylan's adoption fund, go now, read yesterday's post and donate- you know you could spare a couple dollars...


  1. You are an awesome loving mom. So glad the storm has past.You are all the things you say you aren't and I love you so much! Mama

  2. What is going to happen when he is too big for yall to hold down?-G

  3. It's a good question, G. One that we've been talking about... I don't know yet.

    Mama- I love you too.

  4. Jess, may God give you both the physical and emotional strength that is required to survive, but to also thrive. I love you and know that R2 couldn't have any better parents even when it is difficult.

  5. You should find out if his school/school district employs or contracts with a behavior analyst (preferably board certified) who can do a functional assessment, now, while he's still small enough that it would be feasible to implement an intensive behavior intervention program if it's necessary. I work every day with people who weren't able to get those sort of services early, when they would really do some good, and eventually they just became too much for the parents. I can ask around my department at school and see if anyone has names I can send your way.

  6. Youre in my prayers today. Man, I love that kid. I miss him

    -- Chris Cloud


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