This week, as I have been doing research on the CHD awareness month I have been forced to face fears, to hear stories that break my heart and still others that offer me hope. I look at all that Josh has faced and I can’t help but fear for what he still has left to face.
The past few weeks though I have been learning a few things about life, about joy and about contentment most of all. It began with Tim’s sermon on Sunday (which I shared in an earlier link). Then yesterday I was talking via Facebook chat with a Mom who is facing the mortality of her own child and I had an epiphany of sorts, one that was solidified during our book study last night in our small group. We are studying the Screwtape letters by C.S. Lewis. The chapters we were looking at were fear, and how we should be try to think only of the place we are in, not worry about what may or may not happen in the future.
The epiphany? Well, we were given a diagnosis for Josh, we were told of his mortality, and we now know that he may or may not make it to adulthood. There may come a time when his heart is just too broken to fix. I can spend my days in a panic, asking impossible to answer questions; what if he they can’t fix his heart? What if he needs a transplant? What if he rejects the transplant? What if they can’t find a heart? What if he dies? In Kaleb’s case, what if he eats or is exposed to nuts, what if we can’t get him to the ER in time? What if he stops breathing? What if he dies?
OR; I can look instead at the diagnosis as a blessing.
Let me explain. The diagnosis that we have been given for both of our boys, the knowledge of their mortality has changed the way we raise them. We make each moment count as much as possible because we know that time is short, we know they are mortal. Too often parents believe that their kids will survive them, not many actually think that their kids will die before them; you often hear ‘it should have been them burying me, not the other way around’ from a grieving parent.
However, my family is no different from the one next door, sitting beside me in church or playing at the park with us. We are all mortal, a child can die in a freak accident, they can get sick suddenly and die. This is the way of things. We all live, we all die. Not one of us knows the time we will go and we all have a choice in the way we live.
So, back to the original statement ‘I can look instead at the diagnosis as a blessing’. Knowing that our kids have things wrong with them that could steal them early from our lives forces us to live today, take joy in the little things like snowball fights, bedtime snuggles, wrestling on the kitchen floor or snuggles on the couch after nap time. It allows us to raise them as if there is no tomorrow, it opens us up to being more affectionate with them, never letting them leave our sight with out hearing that we love them. The knowledge of their mortality and our own, allows us to LIVE.
The cloud ‘CHD’ or ‘Anaphylaxis allergies’ that used to hang over our heads on a regular basis it turns out is actually a rainbow, and we all know that we can’t have a rainbow without both the rain AND the sunshine.