One year ago today, my baby girl and I were in St. Louis for a major and life-changing surgery for her. Back then, I shared some of what we were feeling in a post here. Here’s what God’s taught us in the year since I sent her back with Dr. Park and his surgical team:
- We are called to be faithful, not fruitful.
We went into this surgery knowing it was right for Zoe but with no way of knowing what the results would be. We knew some children gain significant mobility skills after SDR, but we weren’t chasing any specific end goal. As parents, especially special needs parents, we feel like our responsibility is to be faithful to do whatever can help our child reach her full potential. We don’t get to choose the fruit, much less when or where it may emerge.
- We do the work, and God controls the outcome.
After the surgery, we were committed to a stretching regimen multiple times a day and physical therapy four or five times a week for the first several months. Now we’re back down to PT only twice a week, and it’s nice to settle into that more relaxed routine.
What’s the outcome of all that work? First, Zoe has regained all the skills she had before surgery. Second, she can sit better, both on the floor and in her wheelchair. Third, her supported steps are nicer qualitatively though not much improved quantitatively. Fourth, she doesn’t fatigue as easily and doesn’t need as many naps because she’s not fighting against her body’s spasticity as much as before. Fifth, her legs don’t tense together anymore, which results in less crossed legs, easier diaper changes, and the ability to sit her on my shoulders because her legs can separate enough to go around my neck. All of these outcomes seem tiny compared to some of the bigger leaps in mobility achieved by other kids post-SDR, but we are pleased with where Zoe’s development has taken her. Most importantly, we don’t have any “what if…” or “could we have…” wonderings about what might have been if we had put in more work or taken more risk.
- Our friends love Zoe just as she is.
We knew that we loved Zoe just as she was prior to this surgery. But as we shared that SDR could allow Zoe to walk, we feared that friends and family might be disappointed if the outcome was less than that. (And it was.) But none of those kinds of comments came.
Friends, I’m sorry for thinking so poorly of you. You’ve been our God-sent village again and again, and we love you.
- Our faith rests in God and not in ability.
As I’ve read post after post in our SDR Facebook group, I see parents hungering for a peace and assurance I’ve only ever found in God. If Zoe miraculously walked tomorrow, would we be thankful? Certainly. But would we love God more for that? I don’t think so. And if Zoe never walks, which is what looks most likely, is our faith shattered? No. Not even a little. We’re learning – through Zoe’s surgery and also through the unexpected deaths of two people close to us this year – that trusting God means trusting him to decide how the next page in our story reads. Our faith isn’t based in getting what we want but clinging to God through whatever may come.
So what now…
As we set off on our SDR journey, we knew some possible outcomes but none certain enough to truly forecast life post-SDR. We still don’t know what the years to come will hold, as SDR’s full impact unfolds over several years for patients as young as Zoe. But we know it was worth it, and we know God has taught us much.
Now that I think about it, that sums up the special needs parenting journey for us so far: We don’t know more than we do, but God is teaching us and it’s all worth it. Amen.