Chris took Ben to his stress test at TCH. This was the first big test that I didn’t take him too. I can count on one finger how many visits that I haven’t gone on with Ben. So it was a big deal for me to let Chris do it. And I had to LET him. He offered to do the whole visit without me even asking him too. That was nice. A bit scary. But nice. I had to make some huge threats to Chris if he came home with one word answers. If I asked a question, he had to respond in paragraph form. Well, Chris went beyond the request. He brought home a printout (they don’t hand these out usually) and a video. Score!
The first hurdle is out of the way. We may have our answers with this test. Chris and I think his blood pressure on his diastolic is too low. But we will have to wait and see what the doctor says. That phone call should come next week.
Chris said that his test results put him above the 90% of all kids his age. That is awesome. He loves to run and play. We spend more time telling him to quit running around than we do the opposite. For the last two weeks, he has been on restriction for his physical activity. The PE teacher was having such a hard time getting him to NOT participate that they just switched him permanently to art class until his restriction was over. That would be our Ben Ben!
This life we lead is hard. We aren’t even the ones with the heart condition, but we struggle. Luckily I’m not with the public as often as Chris. So he is much better at it. But there are times that I get tired of people asking me how Ben is. Only because what they want to hear is “Fine”, “Good”, “Better”. Most of the time . . . those are the answers that I reply with. But then there are times that I give that answer and that person will say, “He’s cured?” or some version of that. Then I turn around and tell the person the truth. “No, he’s not cured. No, this is not over. Yes, his problems are still there.” All of this is said with respect, but I don’t believe it is right to deceive anyone either. Even when we get good reports, the problems are still there! They haven’t gone away. So he had a good visit with the cardiologist. All that means is that he doesn’t have to have open heart surgery YET. It IS going to happen. A good report just means that his issues aren’t bad enough to intervene yet. There are people in our life that the only answer we CAN give is “good.” Any answer beyond that is more than they want to hear. We respect that. But what a burden that is for us too. To not be able to tell the truth about our son when asked.
I write all of this to say that this journey is not over. Ben’s health issues are complex and involve more than just his heart. I will work hard to not burden every person I meet with my troubles. And if you happen to ask me the question “How is Ben doing?” and you get an ear full, I’m sorry. I’ve just said “Good” one too many times that day and needed to share the truth with someone.
The Puddles 