Sunday, February 21, 2016

She Gave The Perfect Answer

A memory from childhood is me riding on the back of my Dad’s bike in an attached seat. Our house in Phoenix was not far from a canal that we could get to from the alley off our backyard. I remember going for family bike rides and screaming my guts out or crying the whole way because I was sure that I would fall into the canal. In my minds eye we were teetering on the edge of the canal and I was sure I had dozens of near entry’s into the murky brown water. In reality it was no where close to that and a very neat and fun act of parental awesomeness on my parents part, but at the time I didn’t see it that way.

Now, as parents with some kids who are old enough to be proficient on their own bikes, Frank and I have visions of similar adventures on our neighborhood canal path. I asked Maelee what she thought about riding with me on the canal on her bike. She had absolutely no reservations and answered that she would love to do that with me. Then, because of my own terror as a kid, I asked her “aren’t you afraid you might fall in.” Without missing a beat in her response she said, “Mom I can swim.”

She gave the perfect answer. I thought it was anyway. No fear, no worrying about saying what she thought I wanted to hear, just a moment of perfect wit and clarity of idea right on the spot.

I wish I could have carried that same clarity and wit with me yesterday. Yesterday we had the chance to attend a CF Family Education day at Phoenix Children’s Hospital. I was asked to participate in the last part of the day when there would be a panel. I was nervited (nervous and excited) and also scared. I knew that the people who I would be sitting in front of for the panel would mostly have more knowledge and experience than me with Cystic Fibrosis.

I have written before about the “cringe of comparison” in the sphere of a world like Cystic Fibrosis. At diagnosis you ask yourself and then others constantly ask you “how bad is your CF.” So as you try to find out the answer to that question you realize that there is no scale or number to give, but a very wide pendulum of complications that the disease can cause for a person and that while similarities in symptoms and treatments from patient to patient of course exist each CF person lives out a very different experience.

Of course when you get a group of parents together with this glaring similarity in their children (aka same disease name) of course you want to hear each other’s stories so you can maybe unlock some of the mystery to that original question “how bad is our CF.”

So here I am sitting in the panel and I have already given my introduction and I have tried to speak confidently and from the heart and then I get a question that makes me cringe. Really it’s the one I began asking 8 years ago when we ever thought of having another baby. The question was in essence, “how do you keep your kids safe from each other in regards to the CF to CF contamination concerns.”

My answer was fine. But in my haste and fear of looking another CF parent in the eye who wants to know really what kind of person would continue to have children knowing that those kids could someday play catch with with lung damaging bacteria I may have mistakenly came off as apologetic. So in an attempt to boost confidence and bravery for myself and to prepare myself to give a better answer with confidence and clarity in the future here is my future answer to that question:

      “Yes, we are definitely concerned with and aware of CF to CF person contamination issues. However besides using the hum drum methods of diligent hand washing, doing our best to keep a clean home, and giving a sick person more space like any family would we have no other tricks or methods. Our belief is that while clinically our kids should never be in the same room, this is our family. We believe It is more important for us to be the best family that we can be and spend the most quality time together that we can learning how to love and forgive and work rather than to obsess over who might be contaminating who. We do not believe that the God we worship and love will protect us from all sickness and suffering, but we 100% believe that the God we worship and love is guiding each member of our family through this earthly existence and helping us through all things.”    

That is kind of a long answer, and I may have had to take a breath our two between sentences but if I could go back and say that I would love to do it. Or a much shorter answer would have been, Mathew 19:26 “But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.”

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