A common morning scene involved my tall roommate standing at her closet saying "What to wear, what to wear?" while tilting her curl-covered head back and forth from one sholder to another. Oh, those really tough decisions, ya know.
These days my children make finding something to wear an easy decision: What's clean and doesn't have crusty fingerprints on it (yet)?
With parenthood comes a plethora of decisions. Being a parent of a child with a disability means your decisions increase exponentially. For example we recently brought Isaiah home with new metal rods in his back (VEPTR). That was not the easiest of decisions.
We've had to make many decisions for Isaiah during his short years, the first of which happened before we even met him face to face; but it really wasn't a decision. From the moment we knew we were having a boy, we named him Isaiah and would not have parted with him for the world.
Subsequent decisions have not been as quickly made. What kind of bracing? Wheelchair? Walker? Surgical procedures? Therapy?
How do you make decisions for someone's future when that someone has difficulty expressing his ideas and desires?
Recently some facebook friends in a spina bifida group were discussing how much treatment is going too far. When does treatment "cross the line" and parents, medical professionals or individuals start to "play God" (terms brought up in the discussion)? These questions rolled around in my head even more as we contemplated Isaiah's next surgical procedure. Research seems to have prompted the discussion. Apparently there is some kind of stem cell transplant* procedure done in other countries that can help increase abilities of people with spina bifida. Now I'm not a great internet researcher, but from what I can read this treatment strengthens but does not cure. Some patients have experienced encouraging results of neurological pathways restored. Other patients have been helped to various degrees.
The comments in our group were split. Many of the adults with spina bifida voiced their opinion that parents are playing God when they seek out treatment like the stem cell transplant or in utero surgery. I usually just listen to these discussions, but honestly, I'm tired of just listening. I do want to express my opinion with charity and tact, but I am going to express my opinion. What I am attempting to articulate comes from my heart, and I have respect for the people with whom I might not see completely eye to eye. I hope it can be read in that light, and I hope for charitable discussion, if anyone wants to comment.
First, I hope it is clear that I firmly believe that God gave us the perfect son. When I look at him and play with him, I don't think, "spina bifida"; I think, "Isaiah". I have learned from him in more ways than I could have imagined, but that's for another post.
In the pre-pre-op area
Second, when we make decisions for our son's care, we are not thinking about any other person who has spina bifida. Yes, we will probably ask if anyone with spina bifida has had this or that procedure and how it worked for them, but our final decision in no way reflects on any other person. To put it bluntly: When we choose a treatment for our son we aren't thinking anything along the lines of "We don't want our son to be like so-and-so because his or her quality of life seems deficient in some way or he or she is lacking something."
Our decision is about our son and our family, period.
We weren't given the option of in utero surgery for Isaiah, it was still in trial stages, and we didn't know much about it. At this time we have no plans of pursuing stem cell transplant for Isaiah. The expense, stress and uncertainty outweigh the benefits for us.
We do, however, currently employ several methods to try to do what we think will help Isaiah. He has physical and occupational therapy. We in and out catheterize him multiple times a day. He's had multiple surgeries to improve cerebro-spinal fluid, leg positioning, bowel control, and now posturing and thoracic health. Not all the surgeries have been as fruitful as we had hoped. We've been told at some point that he will need a spinal fusion. He's had multiple MRIs and EEGs and CT scans. We've had him cast for braces multiple times and sought out equipment that we thought would help him. He takes medications daily to help with his bladder and to prevent seizures. Were any of those things playing God? He didn't tell us that he wanted any of that. He certainly did not enjoy his last hospital stay. He isn't thrilled with his current recovery from surgery.
I confess I feel defensive when someone seems to be accusing me of playing God with my child. The truth is God created our son with spina bifida, and then He has charged us to steward this child, and that is no light responsibility. I know one child personally and through her family know of many other children who without stem cell treatment will live extremely fragile lives. Are those parents playing God to fight for their children and seek such treatment?
In my opinion, that first "choice" presented to us before Isaiah was born -- to end his life, to murder him -- is the definite line. Choosing whether someone will live or die is playing God. God has appointed our steps and ordered our days. He has given us Isaiah and Nadia, and He has called home our other children before we met them. He is sovereign, I am not.
The choices that we make as parents are hard. I beg for wisdom every time we have to make a choice for our son. Actually I beg for wisdom every morning before I even interact with my children that I will guide them in such a way that they will yearn to know Jesus. And I often fail. But God is gracious, merciful and forgiving.
When Isaiah is ready to make these treatment decisions for himself, I pray that his choices will be grounded in the belief that he is created in the image of God, and therefore his life is valuable to God no matter what his physical condition. I want my son to know Christ and to find his imperfections of every kind made perfect in Jesus -- just as all my imperfections are being made perfect in Him.
This recovery has been tough for Isaiah, and during most of his hospital stay, this was what he wanted, and I was happy to oblige.
*In case you are wondering, there are options of stem cell treatment that do not require stem cells harvested from artificially aborted babies. If we ever do find ourselves in the position of stem cell transplant, we will NEVER use stem cells from an aborted baby.