By Troy Foster
We sit in our Cincinnati, Ohio hotel room tonight, and I have to say that I’ve never really disliked a State so much. In fact, being a pretty patriotic guy and having been to a bunch of them, I don’t think I’ve ever really disliked a whole State. Now, I do. Congratulations Ohio – for taking that prize. Of course, I’m being irrational, projecting, and will soon forgive the Buckeye State. For now though, I think even natives will understand my current state on the State.
Last summer, our son (Henry) was diagnosed with mitochondrial disease. The type that he has is degenerative and progressive, no cure, not good on the medical side of things. His neurologist’s nurse called us to tell us the news – as we were driving through Ohio on our way to Virginia for a vacation. She explained that his biopsy showed the deficiency. Why, why – Ohio?
Ok, forgive and forget? Not exactly forget – because I have remembered, but that passed and my relationship with Ohio greatly improved since last year. Ironically, Henry’s specialist is in Cincinnati – so we make frequent trips, and have grown to like to like the place – despite the reason for us being here. The kids (Henry especially) love the special time with mom and dad, and staying in a hotel – any hotel – is magical. As an aside, I love that purity. In all honesty, it doesn’t matter one bit to the kids whether the hotel is dirty, in the worst neighborhood, or has no amenities. It’s an adventure of equal magnitude – no matter what. So having that with Henry (and the other kids) has made us laugh and smile a lot here in Cincinnati.
But today was the day that broke the camel’s back. We’re here with Henry for a few days for several appointments. And, we decided to “check in” with the neurologist’s office to see if test results for Luke, our oldest, had come back. You see, having gone through what we did with Henry, we thought that we “saw things” with Luke. “Things” that wouldn’t have meant much had Henry not been diagnosed with the disease. We took Luke to Henry’s neurologist to rule out the disease, and tell us how silly we were. He didn’t. After a brief examination and some blood work, he scheduled Luke for a muscle biopsy to determine whether he had the disease. (If the consequences weren’t so serious, I’d almost be proud of Kristen and my diagnostic abilities.)
When we checked in, the nurse called me back. Same nurse that talked to us about Henry – her name is Shirley. She is very kind, and thankfully, has a calming influence. But her news was not good. She told me that the results had come back, and that Luke had the same disease and severe deficiency that Henry has. After she decided that I understood, she began her discussion about hope, medical advances, and how each patient reacts differently. And then started to tell me about the clinical studies that they would enroll Luke in. At that point, I think that I stopped listening. Hope, clinical studies, medical advances – though her delivery was fantastic – those terms hit with a ton of bricks. This is our oldest son – the kid that seemed asymptomatic. The one that they were suppose to rule out.
Just like any other parent would be, we are devastated by the news. It is hard to process. Much easier to blame a State than take in the reality. But we are in a different place than we were when we got the news about Henry. He has taught us – all of the kids have really – that living life to the fullest – each and every day – is far more important than anything else. It’s the little things. Like the kids loving hotels. And loving to pretend to be spies. So we took off for an overnight out of town, pretended we were spies (friend kind), and stayed the night in a hotel.
Or other little things. Like kissing each other through the window on the way out the door. Giving Henry a “wild jump,” letting Luke crawl in bed with us in the middle of the night, and planning our next vacation. Or letting Lily and Henry cuss in the car during “cuss time” (Lily really loves this). Or taking the kids on dates, and going to every single event the kids have. Or speeding over the railroad tracks so that the kids’ stomachs drop as they scream with excitement. And the things go on and on – buried throughout the minutia of each and every day.
Things that might seem little, but aren’t. Things that might seem irresponsible – or poor timing – but, on balance, it doesn’t matter. Things that you maybe “shouldn’t” do – but the shouldn’ts and shoulds changed for us. (I often wonder if they might be misguided anyway.) Whenever I wonder whether we should be more traditional, more responsible, more – you fill in the blank . . . I just look at our kids. Their smiles, the sparkle in their eyes, and the utter happiness that they experience in the littlest things tells me that I wouldn’t change a thing. What’s especially amazing to me is that Henry, and Luke as of late, are often sick, tired, and have reasons to complain. They don’t. Instead, they sincerely and genuinely enjoy the present and look forward. A perspective that I wish that I had long ago adopted. They are real old souls. (Now, mind you, we also have gone to great lengths to have normalcy. They are disciplined. They have chores. And there are no excuses for bad manners or bad behavior. They are well behaved.)
So we are in a different place this year than we were last with this news. Actually, we’re in the same State – Ohio – which is what this post started with. But, we are in a different state in the same State, if you will. Though incredibly sad and heart-wrenching to have two kids with this disease, we will not dwell on the disease, the symptoms, or the potential outcome. We can’t. Our boys won’t let us – even if we wanted to. Making every moment count, and creating memories now is our focus. After all, it is the little things.
So, instead of thinking about how incredibly sad that I am that Luke and Henry – my precious boys – have a rare disease and will not have enough energy to complete basic functions at various points – I choose to hate Ohio. For now. That’s just until we think of our next adventure with the kids – whether it’s making special cookies for the neighbors or making a craft with toilet paper rolls. Or watching the fire bugs light up in the back yard. Who knows, maybe it will even be passing through (or coming to) Ohio on our next big adventure.
