The hard post.

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…”


7 thoughts on “The hard post.

  1. Glad you decided to post this. Even the hard posts are important to share – so the rest of us know we are not alone, so new moms will know it’s ok to feel this way sometimes and so everyone else might stumble across this and change the way they approach a family like yours. And so you can get it out. Well written!

  2. You have the sweetest, most pure love for that little girl, well those little girls. I admire so much your strong conviction about the perfectness of Zoe. I agree 100%! She is such a beautiful child with such an amazing spirit. And for the rest of the world who might not take the time to see past those braces or glasses, what a loss on their part. Please don’t hesitate to share when those feelings surface, it only makes you more human. For truthfully, it’s amazing that those days are the exception and not the rule. Zoe is blessed to have such an advocate.

  3. Well Ashley just called me bawling and told me to read this immediately and now I know why. It’s as if you’ve climbed into her soul and spilled out her words. THIS is exactly how she feels and can’t make me or anyone of her other friends understand in detail how she feels cause we just love her and Brayden the way they are and don’t see the “DAILY” struggles and routines, and hopes and wishes, and meetings, and appointments, and worries so I from the bottom of my heart, thank you, for pouring out your soul and giving me insight into my best friend.

    I am simply amazed everyday at Zoe and at Brayden and the smiles that they both ALWAYS have on their faces in every single picture. I don’t ever remember my boys ALWAYS smiling; there’s just something about both of them. I know you and Ashley will never understand it or nor does it help ease any of your heartaches, sadness, or pain but as a friend, as family, as a neighbor, as just someone that you run into on a daily, weekly, or even monthly basis please know that you, your story, your journey, and your baby have taught me to open MY EYES as a mother and to not take the little things for granted that I have and do every single day. You’ve made me want to hug my boys a little tighter and a little longer and to not get so frustrated when I have to run her run there go to this practice, go to that game, etc but to be GRATEFUL that I have that opportunity and to not take it for granted. Hillary I hope that makes since in some manner to you and I hope it helps you to see that like I always tell Ashley, God choose you and God choose Ashley to give those babies to for a reason because he knew that Zoe and Brayden would THRIVE in your hopes and that you would turn a learning experience into a challenge and educate those around you. I will pray for you and Zoe just as I do for Ashley and Brayden and you will never know how this “post” as touch others and that I can PROMISE YOU MY FRIEND……

  4. Hillary – I could write a post similar to this one many days of the month! Watching my son live and suffer through NF2 for the last 15 years has been very hard. I admire how positive you have been and want you to know it is ok to feel this way! You are totally allowed! I am always thinking of you and praying for you, your girls and your family!

    I saw this today and thought of you – it’s a short bio and photos of a little girl named Ivy Joy, who has Cerebral Palsy (not SB). It made me think of you and your sweet girls. It’s an inspirational short bio. Just wanted to share!

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