What ever good feelings we had going into the weekend were pretty much gone by last night as we both tried to get to sleep and deal with our ongoing concerns with living as parents of a child with CF. This nagging fear of what we’d do if I lose my job and how we’d manage care for Jacob (let alone Sophie) has created a pretty good size pit in my stomach. And Julie was just plain sick of waiting for the results of Jake’s culture and blood tests which we should receive this coming Friday.
We went to church twice yesterday. One was the regular service, the second, in the evening, was for “Rally” day, basically a social gathering they have each year to kind of get families back in the habit of going to church. Going to church is something I’ve been doing more out of habit and out of a search for answers. I have been done a spiritually challenged road ever since Jacob was born. I have questioned why God would inflict such a horrible disease on an innocent child. I have never been satisfied with the “God has plans” answer. It doesn’t cut it for me.
I do believe that, yes, we were chosen to raise a child with a terrible illness. I believe that we’re strong people and that we’re resilient. I believe that we’re full of love and will raise him to be the best he can possibly be. Blah, blah, blah. I’d like to believe that any parent would be that way. But, alas, I know that that isn’t true.
I have been content to travel this path on my own, trying to keep Jules off this road. But I now know that she, too, is having something of a spiritual crisis of her own. And I don’t know what to do for her. I could tell her to pray, but I would feel a little hypocritical. I don’t have any answer for her because I have yet to find the answer myself.
So you can see how getting up at five in the morning was pretty damn hard to do this morning. Running without the mental blocks was pretty hard. It was a pretty lame run and I barely ran, like, 2 miles. Usually I’d chalk this up as one of those “Monday” morning runs, when my body’s still trying to remember what it’s like to run again, but it wasn’t that. No, it was everything that’s weighing on us that was causing my legs to get tired and my lungs to resign.
I could be describing what it’s like being a parent raising a child with CF. There are many mornings when you wake up, thinking you’re ready for the challenges that face you. Like running, you know what you’re supposed to do. It’s a routine. You run down the street, around the corner, down the bike path and then on home…. And you get up, give some enzymes, hope that your kid decides to eat this morning, and then give him breathing treatments and try and be a good parent.
I guess, like any good jog, you’re going to stumble and possibly even fall on your face on occasion. It’s just so much more difficult to get on your feet when it’s the CF, as opposed to a skinned knee.
It’s very tiresome. You never get any rest from it. The disease is always there. And that is the most taxing thing about it all. Unlike, say, cancer, which can go into remission, CF is always there, lurking in the shadows. Waiting to pounce.
I want to positive. I want to have hope and be the optimist again. But that feeling that “everything’s going to work out” is so foreign to me now. I can barely remember what it’s like to feel that way.
Now it’s just “wait and see”.