A Fine Line

Ella had her preschool orientation and back to school picnic yesterday. It is so fun to see Ella’s new school and classmates. I do miss the excitement of back-to-school. It’s such a thrill to see brand-new supplies, refreshed teachers, clean classrooms and little children full of anticipation for a new year.

I love the school we’ve picked. I feel completely and totally comfortable with it. It’s exactly what Ella needs. I’m not even stressed that she will be there five days a week. Cognitively, she needs this and will love it. She’s a bright girl, ready for a challenge. She’s quick to pick things up intellectually – her constant observation has paid off big time.

I’m stressed about letting my little Ella out into the world because of her motor delays. When you see her now, she doesn’t look that different from a child her age, other than the fact that she has a lot of hair and is taller than most children her age (which is bad because people assume she’s even older!). She probably won’t qualify for services through the district after age three – hooray! But, she still has delays. She continues to progress amazingly. At the same time, she’s been walking for less than a year. She has motor planning problems and tends to “over think” her next move and then psyches herself out of moving at all. I don’t want them to think she’s being defiant if she doesn’t do something like sit in a chair, she’s just not very good at doing it. She still needs a lot of help with going up and down steps. The playground is a hurdle we’re slowly overcoming. I look at the bathroom as a disaster waiting to happen. She’ll have to climb up on a step stool, take down her pants and turn to sit on the toilet. For “normal” children, it’s barely a second thought. Ella will have trouble with all of this, and will possibly end up in the toilet. I know she’ll receive lots of help, and her teachers are so wonderful and caring. It’s just hard to let her go when the last year and a half of my life has involved therapy sessions, helping Ella master skills and become more independent. I’m not coddling her, I’m not babying her – but there are just some things she can’t do successfully yet.

I’m struggling with the line between being an overbearing parent to being an advocate for my child. At what point to I just let go and let her do/try/fail/succeed. At what point do I intervene/suggest/adapt her environment. While I’d love to just send her off with the idea that she’ll learn how to paste paper together, primitively write her name and learn some social skills along the way – I can’t. I worry about her falling on her face trying to get down the one step to the playground. Wonder how she’ll ever be able to use the potty, let alone pull down her own pants. The preschool/elementary teacher in me says, “Let go, she’ll be fine. She’ll learn, she’ll grow by leaps and bounds.” But the mommy who watched her baby go under sedation and be limply carried out of the room to receive an MRI, who drove 60 miles round trip to visit a good neurologist several times, who watched Ella struggle through so many therapy sessions doesn’t want to let go.

I hate delayed myelination. I hate that nobody understands it or knows what to do about it. There are zero answers as to what caused it, how to fix it and what the future holds. I can only assume that if we keep doing what we’re doing, it’ll all shake out in the end. I just have to give up my worries to the Lord and not internalize them. I have to let Ella fall (literally and metaphorically), get back up and try again. She’ll find her own way, adapt things on her own and with some help from her team of therapists, teachers and family. We’ll get there. It just takes time, effort and a whole lot of patience. I’ll get there. I’ll let go. I’ll find that line between being an overbearing parent and simply an advocate. I see how far we’ve come in such a relatively short span of time and it helps me say, “It will be okay. She will be okay. I will be okay.”

    

We are okay…we’re actually doing quite well.