Sometimes, even when things in life are pretty much perfect, worry & doubt can creep in. Even when you know beyond a shadow of a doubt that God is good, and He has taken care of your every need and will continue to do so, it’s hard sometimes to let go of trying to do it yourself.
I am a type A person.
Now, granted, I’m not ridiculously type A. But I like to plan, I like to know what’s coming up, and I like to have my life pretty much organized the way I want it to be (yeah, I know 😉 ).
That personality trait doesn’t jive well with spina bifida.
Last Tuesday we took Zoe to Cincinnati Children’s Hospital for a routine MRI. Well, routine on the paperwork but with spina bifida, nothing is ever just ROUTINE. Since we moved, the drive to Vanderbilt just became long & cumbersome. I wanted to have specialists who could follow her here close by, just in case. So we enrolled her in Cincinnati’s spina bifida clinic. Overall I’ve been happy with them.
But the neurosurgeon wanted that dreaded MRI done. Just to “take a look.”
Sometimes I think when you look for problems, you’re gonna find them. I like to leave well enough alone.
But I do understand the doc’s reasoning. Zoe’s balance & upper body strength has always been weak. Her spina bifida lesion is low on her spinal cord, so theoretically she should be able to do some functional walking.
As much as it hurts my momma heart to admit it, she’s not doing those things 😦
So we went in to find out why.
Our “taking a look” brought about more questions than answers. More worry than peace.
And more waiting.
For the most part, her MRI was very much typical of a child with spina bifida. The one surprise is that she has a cyst, a collection of fluid, inside her spinal cord. While these cysts can be found even in folks with NO birth defects, no developmental delays, and found incidentally, it is something we can’t ignore.
And so, we wait. I am not a patient person. I like answers and I like to have a plan.
When things hit the proverbial fan, I get busy. I start researching, looking things up, making phone calls.
The concern with this cyst on Zoe’s spine is whether or not it will grow. IF it gets bigger, it could press on surrounding nerves and cause her to lose abilities & function she’s already gained. If it stays the same, we just continue with knowing it’s there, and watching it. Which means more frequent MRI’s.
Deep down I feel she is going to need surgery at some point to remove it. It hurts my heart & to be quite honest, it makes me angry sometimes that she (& WE!) have to manage all of this. It is a very heavy weight at times. I doubt my ability to do it as her mom. I haven’t been in the best of moods lately because my mind & heart have been so consumed by all of this.
Next week we will hear back from her former neurosurgeon at Vanderbilt–the one I have trusted with her since she was born. I want his opinion on what our plan should be. Keep waiting? Do something?
I don’t do “watch & wait” well. I like to KNOW (don’t we all, 😉 ).
Prayers are appreciated as we wait for more answers and determine what’s best for our little lady. She is amazing & continues to keep her trademark smile on her face….pray for peace & wisdom. Pray that I wouldn’t let this consume me on a daily basis. Pray for my sweet husband, who has just jumped headfirst into the world of spina bifida. Pray that this cyst would not change, not grow, or better yet, DISAPPEAR. And pray that if God doesn’t want it to go away, He provides us with everything we need to take care of it so that Zoe can continue to make great progress.
In other, more exciting news…our household has been busy 🙂
We got a new puppy…Rory…he is a sweet little Boston terrier and the best little thing…
Tell me that’s not the cutest thing EVER!!
We took a trip to the zoo for Labor Day…
Faith joined the Girl Scouts…she’s a Daisy (how stinkin’ cute is that!)…
AND…my husband has signed his first publishing contract!! In case you didn’t know, Graham is an incredible writer. Not only with his blog, but he is amazingly gifted in writing fiction. He recently received not one, but TWO publishing offers 🙂 His first book in a series, Sleepwalker, will be out soon in both print & electronic version…so you can download to your Kindle 🙂
No picture to go along with that, so I’ll give you one of us instead…
Side note…HOW has it been almost two months since our wedding already? Time goes WAY too fast people.