Rare Disease Day 2015

A few years ago, I wrote this post about what a typical day looks like for us. What I wasn't able to 
articulate at that time, whether it was because I was so deep in the motions of everyday life or the true burden of this disease hadn't yet full sunk in, was how it makes me feel. So today, on Rare Disease Day, I want to share what a day really feels like for me.

I wake up in the morning and I don’t want to get out of bed. Like ever. I'm tired. Always. I'm happy to grab a kid and pull them in to snuggle, but I’m so tired of this routine that I just don’t even want to get out of bed and start another day.

I finally pull myself together and head downstairs. I pour a couple of Ensure Plus into a cup with a straw, hoping he will drink them, knowing that he needs them, worrying that they won’t be enough. I make breakfast for the other three, and lunch for my first grader, while everyone complains that i’m making something they don’t like or that I’m not paying attention to whatever they’re telling me. Its true, I’m not. I want to be paying attention, but I can’t. I’m not sure why. I’m thinking about the coughing that I hear. Its usually there when he wakes up, some days worse than others, most days subsiding after the morning treatment. I have to decide if its enough to stop everything else and start the treatment or if it can wait the 15min until two of the 6 are out the door. I’m yelling out spelling words and only half listening to hear if she spells them correctly because the coughing interrupts her answers.

While they’re eating breakfast, I pull together the medications and equipment that we need to start our day. Theres always moaning and groaning when I announce that its time for “breathies”, and I wish he could really feel me when I say “I so hear you bud, I don’t want to do this either”, but I’m committed. He begs for the “short” treatment, the one thats only 24 minutes instead of 30. He can tell the difference.

Once we agree on a show to watch, we settle in for 30 minutes of vigorous shaking and various medications. We always sit with him, usually me, so that he doesn’t have to do it alone. The weight of that is heavy, as sitting with him means time away from the other two still at home. They’re use to this. They shouldn’t have to be. It doesn’t make it any better.

Truthfully I don’t know if any of them really know what CF is. I don’t know if they should? I wonder if I’m keeping too much from them? I also wonder if I’ve given them too much. Are the behavioral issues because he’s 4? Does she act out because I unfairly dedicate more of my time to him? Are they because she doesn’t understand or she’s curious but doesn’t know how to ask? Do they have questions that they’re not asking me because I’ve shown them that I don’t have time to listen? I know that really, I don’t have time not to.

I’m scared when our secondary insurance decides to drop us and we now need a few extra hundred dollars a month to pay for the Ensure, that is the only reason he is gaining weight, on top of all of our medications. I keep meaning to schedule an appointment with the behavioral psychologist about his eating habits but I hate that I need someone to help me parent. It feels like a failure. When dinnertime becomes a nightmare, when he won’t eat any solid food, and when has to whisper to me that he doesn’t want to eat when other people are looking because he has realized and I have failed to realize that he’s aware that others are aware that there’s a difference between whats on their plate on whats on his, I concede and schedule an appointment. It feels awful.

When we go to the doctor and we only get more bad news - more to do, more to schedule, more to track - if feels like I’m going to drown, but I have no choice but to just keep swimming. And I have to keep a smile on my face because I am trying with all my might to convince him that he’s no different than anyone else, and that this disease is just something that runs in the background. He doesn’t need to know all that it takes, but he does. He’s smarter than most people I know, and he’s not even 5 yet.

None of the tasks that I get to do on a daily basis are a heavy lift for us - by most standards a well-to-do family, reasonably well educated and financially secure - but the combination of small tasks that I have to perform, the cognitive burden of this disease is sometimes more than I can bear. I wonder what the real impact is of all of these medications and treatments and appointments. I wonder what’s actually necessary, and if I’ll ever actually know whats really necessary. Is it okay that I skip an afternoon treatment now and then for a trip to the park? I think his mental and emotional well being are of equal importance to his physical health. I think the doctors agree, but they only ever seem to offer more to do. I do believe they have his best interest at heart, but not like a mother does. Or maybe they do have his and I’m being selfish in thinking they perhaps they should also have mine? Do they understand how guilty I feel when I have to say no to school or the day of a big party because the teacher has been kind enough to let me know that there are a number of kids there with colds? They can’t possibly feel the ache in my heart when school calls to tell me he won’t come out of the bathroom because he has trouble with his bowels and wiping by himself. When the family wants to take a vacation to a lake, something that we just can’t do because of his health, or have a fire in their fireplace, the little things that we just can’t partake in, and trying to minimize them so it seems like no big deal that we have to miss out, when really I desperately want all of my kids to partake in lifes simple pleasures. Is it right that I keep all of them from these things so that he doesn’t feel even more left out? Should they have to suffer from this disease too?

There is always a fear that you will lose your baby. It’s not all encompassing or debilitating, but its ever present and its completely out of our control. I could do everything right - by the books, medically speaking, everything right - and we could still lose this fight. It happens every day. We see it on Facebook, on blogs, among friends. I think about that.

I also think about how lucky we are and how good we have it. I cry for the families that lose their children to CF because they were born into a different socioeconomic class than I was. I feel an obligation to use what I have and what I know to help them too. And then I feel guilty for dedicating my time to someone other than my family. I wonder if all the work that I do is really hurting my family more that its helping us. I think that a balance is good, teaching my kids the importance of helping others and also finding time for yourself. I don’t think I’m doing a very good job of it, but I’m trying.

That’s what I think about in a day, every day. What I what you to know is that we are trying. The people like me, and the people nothing like me; we are trying. We are trying the best that we know how. We have to perform medical procedures, without any professional medical training - correcting a rectal prolapse, cleaning a stoma, changing a trache. We compound medication in our kitchens, monitor oxygen saturations at 2 in the morning, sterilize medical equipment the best way that we know how, all with knowledge that we’ve put together from the expertise of our healthcare team and also from outside of the institution, from our peers. Our medical care does not happen 4x per year when we go to see the doctor. It happens 24hrs a day, 365 days per year.

We aren’t mad at doctors. We are desperate for them to ask the questions that will allow us to tell them all of this. This isn’t easy to say, and we often don’t even know how to put into words what our priority is. We want the same thing that you want for us - good health. But to minimize the impact of this disease in our lives - for a day, an hour, just a moment - would mean the world.

I often go to bed at night feeling defeated. The kids are not happy. The house is not clean. The disease is not cured. I know whats on the other end of a good nights sleep. But I remain hopeful.