I'll dive in.
Sometimes it hurts.
I read this on Katie's blog as she nurtures 13 adopted daughters while serving in Uganda, " I do not like the idea of a child having to endure trauma so that one day she may learn from it, or teach another about it. But I still believe He has purpose, even when I can’t see it."
When we started the adoption process again in 2006, we did not list spina bifida as one of the needs we felt comfortable in parenting. That would NEVER have been my idea.
But, it was God's plan.
And I have been in love since.
Many of you have emailed or sent texts as you prayed about our visit to Shriner's. We received news we expected and some we did not. We knew that the doctor was recommending that the hardware in her hip be removed. We have scheduled that surgery for August 29th. The surgery itself is simple and hospital time is likely to only be one overnight stay, would possibly be outpatient.
When the hardware is out though, there will be holes in her bones, leaving them easy to break until they heal. Ellie will then wear a brace for 3 months. The brace will extend from her hip to her foot, and keep her leg from twisting, thus causing force that could fracture her femur. When the spinal defects care nurse asked if we had a wheel chair, I was able to say, "No, but we will tomorrow."
Thanks to our friends Vicki and JP, we are now the owners of an awesome chair Ellie can use when she must travel longer distances, both after surgery and later when needed. JP is also adopted from China. He, too, can walk but has had many surgeries and some still to go. He also uses the chair when it is necessary to walk long distances. But, he has outgrown this one. And, his Mama knew just the family who might could use it.
The doctors have been monitoring Ellie's scoliosis. As soon as we saw the x-rays, we knew there was progression without hearing any numbers. The PA put up two pictures on the screen, the first x-ray taken of Ellie's spine in 2008, and the one they took on Tuesday. It was heart-wrenching really.
Her curvature has increased from 20 degrees...
to 40 degrees.
I was standing up...looking carefully at the screen when the PA began to discuss treatment. I was prepared for her to discuss bracing, knowing I hated for Ellie to go through that.
But, she didn't begin with bracing.
She began discussing surgery.
A very long, complicated surgery.
As she explained: Scoliosis in spina bifida patients does not respond to bracing, so surgery is the only option for improving scoliosis. It is such a complicated surgery it is not even recommended for most children with spina bifida. As the scoliosis continues to progress, however, it will interfere with Ellie's ability to walk. Since she is mobile, it will likely be recommended for her.
Ellie is currently under the care of Dr. M at Shriner's, but he does not do this type of surgery. There is another doctor who visits Shriner's twice each month, and we had the option of seeing him, or seeing a doctor closer to home.
Stan asked that we see the doctor at Shriner's to keep some consistency with her orthopedic care.
As we scheduled the hardware removal surgery, we learned that this doctor will be at Shriner's the day before her pre-op. (I felt in my spirit the LORD was sending affirmation.) So, Ellie will see the new doctor on Monday, August 27, her pre-op on August 28th, and her surgery on August 29th.
Usually, hearing such news I didn't expect sends me into a depression of sorts, but not this time. I have peace.
But, what hurts is....
knowing how much it will hurt her.
I have likely mentioned this before, but I think it bears mentioning again.
When we were considering Ellie's adoption, I often wondered if "I" could handle her needs. How would I deal with surgery? How would I deal with cathing? How would I cope if she did not have bowel continence? How would I manage if she never learned to walk?
A long time ago, I learned it wasn't about me at all.
It is about her.
I hear her voice just now as I type. The pitch of her voice is higher than most 7-year-olds. She is such a BIG personality in a tiny body.
I hope that those who follow our journey through life will know that she is a joy.
She loves with her whole being.
And she is loved by so many!!!!!
She enjoys life everyday.
I hate to think of the pain that she will endure, the moments she will miss doing the things she loves.
But, the message I truly want to convey is this:
I wouldn't trade our life with Ellie for anything.
I know God can and will fulfill His purposes in her life. I know she will continue to bless others more than we could ever bless her. I know that I have never regretted adopting a child with spina bifida. (And, yes we have now adopted two more.) I know it is not about me.
If you have not already done so, I invite you to click on the spina bifida tab at the top of the blog page. Here I am working to link various posts about Ellie...and about our boys...to encourage other parents of children with spina bifida.
But, more than that...to encourage other would-be parents.
If you have ever considered adopting a child with special needs or know someone who is, send them over. Introduce them to our Ellie. May her spirit encourage others to reach out and do more than they can do.
Because our God can do more than we can ask or imagine. He is an Ephesians 3:20 God. He can do more in a parent's heart than we can ask or image.
The Miracle of More.