Spina Bifida is an oddity. It affects those that have it in different ways. When we first consulted with a neurologist upon finding out that our sixth child had this malady, he prepared us for the full gamut of possibilities that could affect our baby. She could be severely mentally retarded or have only slight cognitive delays. She may be able to walk or be wheelchair-bound her entire life. She may be able to urinate on her own, but given the location of her defect, it’s unlikely; and #2? Forget it. After all that we had heard, the next seventeen weeks or so was the stuff of nightmares. We prepared ourselves emotionally and spiritually for all the worst-case scenarios as her birth loomed heavy.
Alongside all of the worries, doubts, and fears, we also were overcome with well-wishers. You know the kind; those who want to say something but have never been faced with such a situation and so try to be encouraging but for the most part come off patronizing, condescending, or worse, just plain stupid. We were lauded as the “best parents ever,” “God surely has a plan for your family,” “you are both soooooo special to receive such a little miracle from God.” Don’t get me wrong, I would like to think myself worthy of receiving any blessing from God, especially my precious punkin’ doodle, but I know the truth about myself. Plus, we heard things like, “Well, she couldn’t be born into a better family,” “y’all have so much experience with children, there’s no way this one will go neglected,” and “God loved y’all enough to give you a special one.” Like I said, some things that have been said to us have been just plain stupid.
On the one hand, it is a blessing that Miriam was born into our family and not into a family that doesn’t have the sense to raise gerbils. Yet on the other hand, perhaps Miriam being born into our family has nothing to do with her at all. Whether we like it or not, we all have disabilities. Miriam’s are primarily physical but my disabilities are much deeper.
Miriam has helped me to see my disabilities and perhaps even discover disabilities I didn’t even have the capacity to understand I had.
I realized how badly I had been treating all of my children. Why wasn’t I overcome with the same sense of awe and wonder when my other five were born? I realized how paltry my prayer life was. Why didn’t I pray for my other children the way I prayed for this one? I realized how feeble my sense of the power of God was. Why didn’t I trust God for outcomes the way I trusted Him with Miriam’s (and still do)? I realized how selfish I was. Why, even though I love all my children, do I want to give sacrificially to her and not the others? I realized how faithless I was.
Wait, you’re thinking, isn’t this guy a pastor? Yes, I am, and faithlessness can be measured in degrees. Why was my faith so limited? Why did I only have faith up to a certain point, but then be certain that there are some things God just can’t pull off?
I am convinced that Mark 11:23 is the least believed verse in all the Bible:
“For assuredly, I say to you, whoever says to this mountain, ‘Be removed and be cast into the sea,’ and does not doubt in his heart, but believes that those things he says will be done, he will have whatever he says.”
Now before you chalk me up as a kook, I don’t expect to see half of the Rockies go sailing by my window just because I believe that it ought to happen. I’ll tell you what I do believe, though. I believe God is just as powerful today as He was in Biblical times and He can accomplish whatever purpose He desires. Some may say they do believe this verse, against my claim that it is the least believed verse, but then turn and weave a tangled web of arguments to say that a modern day Lazarus-like resurrection just ain’t possible. I humbly disagree. God’s methods tend to be a little more subtle, and subtlety was the way he got my attention. Inside my heart was a mountain incapable of moving, but that little girl moved it. All those disabilities had wrapped themselves around my heart in a Gordian knot that only God was able to untie. Yes, He still moves mountains.
Tony, having been one of the ones who may have said something stupid in the beginning of your fears, I do want to say I have no idea why God blessed you with Miriam. However, I do appreciate the stirring testimony you offer us here. God bless you and yours…you are precious in His sight and in my heart. Mrs. V
You have been only encouraging, graceful, and helpful. You have been as long as I have known you, and for that I am deeply grateful. Thanks for putting up with me. 🙂
I thought the title of your piece was about something totally different. But here is what I thought of. As a parent of a disabled child, we end up having the same disability. I can say I know what it is like to be on a cathing schedule, bowel routine,having many doctor appointments, remembering meds, and what it is like not to be able to do everything everyone else is doing. Because her disability is my disability. For now anyway it is. The true sadness I feel about this is that when she is grown and capable of handling her own needs, I will no longer be disabled, but she will. My goal however, is to make sure she learns those skills, because she will know no different. This will have always been her way. Being independent makes her the best and least disabled she can be. So as parents we must let them fly away, even if they are disabled, and we no longer are.