There was a time, before Matthew’s miraculous healing, when Aaron and I would lie awake in bed night after night crying, holding and comforting each other, and trying to “make sense of it all.” We never said, “Why us?” – we knew there was no answer to that question. Our questions were more along the lines of, “Why does this happen at all?” Why are babies born with hearts that are too deformed to let them live? Why are little lives cut so short? Why does our little boy have to suffer heart failure and die? Why do little ones have to suffer at all? Why does all this “bad stuff” happen?
Most of the comments and notes of comfort we received were very helpful, comforting and encouraging – and there were so many of these – thank you to all who loved and supported us through this time! However, some comments, although very well-intentioned, were just not helpful. Why did it bother me so much when someone said, “God won’t give you more than you can handle.” I know that God, through His grace, does give us strength to face even the toughest situations – especially if we ask for the strength and rely on Him – but part of that comment implies that God “gave” us a sick and dying baby intentionally. The God I know and love doesn’t create sickness or pain, or give them to anyone. But, if God is truly in control of everything, why does it happen?
It also bothered me when someone would say, “God gave this to you for a reason.” I do appreciate, and am so grateful that God, through His grace and mercy, can bring good out of any situation. But, that doesn’t mean that he created a problem so that he could bring good out of it. Again, the problem of God giving or creating the disease.
The answers we found for all of these questions were answers we already knew, but there was comfort in sharing them with each other anyway: Put simply, God doesn’t create sickness or disease. But, we live in a fallen world, full of sin. When sin entered the world, things like disease, pain, war, malformed hearts and extra chromosomes happen. These things are not of God, and He does not like to see us hurt, nor does he give us these things in order to bring about something good. This is Earth, not heaven. All will be perfect in heaven.
We haven’t talked about it for awhile. I guess these questions just aren’t on our minds these days, now that we are holding and playing with our beautiful, healed baby boy. It feels like the “bad stuff” is over. But, what about Matthew’s extra 21st chromosome? I guess over time, that has ceased to be part of the “bad stuff” in my mind. Life is very good now – sure, we’ll have challenges, and everyone has rough days now and then – but our Matthew is alive and well. He’s more than that, in fact – he’s beautiful. He’s playful. He’s funny. He’s so sweet and loving. I will never find words adequate to describe him – you’ll just have to come meet him for yourself.
So why bring this up now? Memories of our theological discussions came flooding back after reading Amy Julia Becker’s article, Babies Perfect and Imperfect. Amy learned that their daughter, Penny, had Down syndrome shortly after she was born, and struggled with the same things that many mothers of kids with Down syndrome do, wondering what “disabled,” and “abnormal” would mean for her daughter and their family. She came to realize that dependence, need, and vulnerability were part of the human nature God gave to every one of us. No person is completely self-sufficient – if we were, we wouldn’t need God. Our kids with special needs exhibit those characteristics of human nature more fully than the rest of us, but that doesn’t mean that they are disordered or broken. She says it much better than I do, and I would encourage you to read her full article. For now, a couple excerpts:
At first, I could only see her extra chromosome as evidence of imperfection, as a series of limitations that were different and worse than my own human limits. I didn’t conceive of limits—hers or mine—as potentially good: gifts from God that enable each of us to admit our creatureliness, our need for one another, our need for God’s grace.
Early on, I had asked my mother whether she thought Down syndrome happened because of sin in the world. She responded gently, “The only evidence of sin I see is in how the world reacts to Penny.”
For a long time, I was looking for answers to questions that were hardly worth asking, and I was trying to recreate my daughter according to a cultural standard of normalcy rather than according to a biblical understanding of full human life. We are created in the image of God, recipients of divine love and grace, and we bear the responsibility and privilege of extending love into the world here and now, and forever more.
Some of these memories were on my mind earlier today as well. I had a “Mommy milestone:”
I finally dumped out and threw away Matthew’s morphine.
As I was cleaning our bathroom cabinet today, I finally just dumped the stuff down the drain and threw away the bottle. Why is this such a big deal?
The morphine was a prescription we had for Matthew when we brought him home on hospice. He was expected to have heart failure within his first few months of life – heart failure that would bring with it pain and distressing respiratory failure. When this happened, we were to give Matthew the morphine. It was up to us to decide when he needed it, and up to us to decide how often to give him his dose. It would take away his pain and distress, but, as a side-effect, would probably also decrease his drive to breathe to the point where he would stop breathing. That would be the end.
I shuddered every time I saw that bottle. It was to end pain, I knew, but how would I live with myself after I gave it to him? How could I give my own son a medicine knowing that, even though it would take away pain, it could also end his life? What if I gave too much? What if I gave too little? We didn’t want him to suffer needlessly, but we didn’t want to expedite his death either! That is yet another decision that no parent should ever have to make. I am so thankful that I never had to open that bottle – until today, when I dumped the whole thing out!