Some days I just really dislike spina bifida. All the other parents raising a child on this same journey will understand. Some days I just want to take Zoe, and run, as far away as we can, from therapy, from evaluations, from “stuff” like AFO’S, standers, and kinesiotape.
I have days where I think, it’s just not fair. Not fair that I can’t just enjoy time with my youngest without feeling guilty that I didn’t put in enough tummy time. Or do enough stretches. Or enough stander time. Or that we didn’t work on fine motor skills enough today. I get tired of sometimes feeling like it’s never enough.
There are days that I wonder what life would be like with our two girls without spina bifida. It’s like the proverbial monster in the closet. You know he’s there, but you just keep hoping he behaves & stays in the closet. Sometimes I wish I could just shut the door, and forget all about him. That he would just go away.
I get tired sometimes, of answering questions. I try to have a thick skin. To not let things bother me too much. I try to remember that there was a time when I, too, didn’t have a clue what spina bifida involved. I would’ve asked parents these same questions.
“One day she’ll walk, I just know it.”
“Why does she wear those braces on her ankles?”
“What’s wrong with her eyes? Why does she wear glasses?”
Usually, I try to just look at those statements as an opportunity to educate people. But sometimes I just get tired. I just want my baby to be accepted as she is, with her braces, and her glasses, and whatever other “gear” we accumulate. Ask me what new words she’s saying, or talk about how cute she is, or how her glasses bring out her personality. There is so much more to Zoe than the spina bifida.
And don’t use the word wrong.
There is nothing wrong with her. She’s actually been the healthiest one in our family over the past year.
She is perfectly made. Just like we all are. Yes, she obviously has some challenges. But she is perfect. She is my Zoe. She works harder than any other baby I know. Milestones that come so easily to other babies, that result in parents bragging about how quickly their child rolled over, sat up, or walked, require so much more time, effort, determination, and ultimately patience for Zoe. And me.
But they are that much more sweet when they happen.
I have debated on whether or not to post this. It is not a happy, feel-good post. But it is honest. I admire my daughter so much. She puts up with so much and just keeps smiling. I admire her sister so much–her unending love for Zoe, her compassion, her full acceptance of all that Zoe is. I admire my husband-his unwavering faith that Zoe will accomplish all that she is meant to, and we will love, encourage and accept her no matter what.
I suppose I am just going to somehow HAVE to learn patience. I pray for it everyday. Patience to wait for Zoe to learn to not fall over when she sits up. Patience to wait for her to say “mama,” or crawl, or do whatever will be next on our list of things to work on.
And patience to answer with grace every time someone asks me “when will she….” or “what’s wrong…”