As I took considerable amount of time away from the blog I've been debating on what to post as everything is status quo or as I and only I say "normal." But I've decided that my demise and downshift is for sure the season of summer. It has to be, by far, the most difficult season to have cystic fibrosis. As a Wisconsinite we are advantaged by the long winters and rainy springs to keep us indoors. Therapy is not so big of a deal. It's not so hard to ask your toddler to comply with indoor movies and a round of nebs. On the flip side. Summer.
I work. Come home. The kids want to play in the sprinkler. They want to ride their bikes. They want to take a trip to the park. Or play on the playground in our back yard. They want to go swimming. The list never ends. And so I am constantly finding myself trying to "sway" them back inside. I need to make dinner, start therapy, and if going outside involves sand or dirt give baths, put jams on and at the end of all this fall over and self-indulge in the highlights of the Casey Anthony Trail. What on earth will I do when the trial is all over?
Finding that balance between "everyday normal and average kids" to "you still have CF and it doesn't stop just because it is summer" is a difficult one.
What are some ways we try to overcome this obstacle as a family?
I always begin this battle with a question I ask myself each and every day...how are we going to fit CF into this day? When do we have time to do treatments? And then, I proceed with my ammo of combat:
-The kiddos do their nebs while I cook dinner. Have you heard the saying "kill two birds with one stone?"
-I let them "unwind" first when I get home by playing outside for 30-45 minutes before hitting the machines. By putting a time limit on their outside activities they will still get their treatments in AND have a bit of normal routine in their day.
-I find a different activity that they haven't done in a while and combine it with therapy. Play dough, crayons, painting, the wii. Although these can get a little tricky with vibrating machines!
-FLEXIBILITY! Sure, we have a routine. But every now and then routine is completely thrown out the window. Prime example of how we try to fit CF into our life and not the other way around: We do treatments in between things like at the outdoor movie theater before the movie starts. Or treatments in the morning if we will be gone late at night. Or treatments before t-ball and dinner after. You get the idea.
-And sometimes it just does not happen. If the kids are doing well I am especially unrelenting to not give myself a guilt trip if we occasionally need the "night off." It helps all of us recharge our batteries for the next day. But we never do this two nights in a row. We might just need that little boost of energy for challenges of tomorrow. If you are a CF parent don't let yourself get down. And please don't feel like CF controls your life. Because it doesn't. You control it!
My hope (after the gentle persuasion of our friend Catherine who is undergoing her third stem cell transplant) is to start a Lots-a-helping Hands (a free web-based community site) which allows you to post your needs on a calendar and allow people to sign up to help. I'm thinking this could be a huge help for appointments when Cooper is the only one going in and having someone else play with the other three at home or using it for nights when I have youth group and Chris is alone to fend for himself and 3 kids who need therapy. To help get the kids on their machines or do Cooper's therapy. Or play nights for Colin while we are doing therapy on the other 3. So my goal for the summer months will be to figure out what our family's needs most are and how we can best utilize "lots of helping hands." I know people want to help, but it's very humbling to allow others to take on our responsibility of caring for special needs children. But as I think of the kids getting older and more involved in sports, extracurricular events, homework...CF seems to overwhelm that schedule even more so. Check it out Lots-a-Helping Hands
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