When your child is diagnosed with cystic fibrosis, and any other chronic life impacting medical condition, the social workers talk to you about the critical need to let go. By that I mean when your child reaches those teenage years, you’ve got to let them begin to manage their healthcare. Of course that is a journey, and doesn’t happen all at once. It’s definitely not something where you simply say go ahead and make all your own decisions. It’s a team effort.
Today we had psychology, G.I., orthodontist, Brooklyn had online school, Lexi had virtual school, and I worked eight hours. Days like this when they were younger would have been overwhelming. Definitely in a non-Covid world where we would have gone to the doctor and not had so many virtual calls, I would of had to miss an entire day at work. Today however, I was simply filled with pride.
It’s scary to think of your children managing their health without you, when their health is fragile. In the beginning you can’t even imagine that they could ever be capable of doing so. However I see it happening before my eyes. The way the girls discuss their medications and their overall health, with minimal input from me, shows me that they’ve got this.
Our G.I. doctor has treated the girls for 15 years. She commented today how wonderful it was to watch them grow up, and begin to assume responsibility for their health care. We are at a point now where they tell me when a medication needs to be refilled. They tell me when a flareup is bad enough to call a doctor. I am at a point now where I can accept that they are capable of being responsible.
That may sound strange, but as a parent you’ve got to at some point let go. It’s hard to do and mistakes will be made. We’ve had a situation where a medication was missed for a couple of days because the pharmacy didn’t have it on hand, and I didn’t know it needed refilled when it did. But symptoms got worse, cause and effect lessons were learned, and now that child understands the responsibility for planning ahead for refills. There are other medications like inhalers, that I absolutely make sure there’s always a cabinet full of, because oxygen is something you don’t mess around with.
In five months my daughter with cystic fibrosis and more will turn 18. She’ll actually have to sign a paper giving doctors the consent to discuss her medical situation with me. I’m proud of her, because I’m starting to see that she is going to be able to manage her health. She might not even see that yet, but her doctors and I do.
On Sunday Brooklyn came to us and said she needed to speak to Adam and I. She let us know she was having some anxiety, admitted that it was impacting her attitude and that she knew she was short tempered and her room was a mess. She talk to us about her plan, and asked us to be patient with her. Again, just simply proud. Being able to recognize and articulate your emotions is critical. She’s going to be OK also.
Before we joined this world of chronic illness I always thought of social workers as people who helped messed up families. Now we have our own medical social worker, I understand the important role that community plays in helping our children and us become ready for their independence. And independence with a chronically ill person might look different than independence for a healthy person. That’s OK. I am thankful for the social worker who prepared me through the years for allowing my kids to grow and become independent. I am thankful for the social worker who makes sure that we have the money to pay for expensive medications and can steer us in directions if we don’t. I am thankful for this community that will help us navigate Lexi‘s future from insurability to access.
Anytime a parent has a teenager they struggle with how much independence to give. How soon to give it, and are their teens responsible enough to have it. Make sure you’re supporting each other, being there for parents, and being part of that community. Help our teens learn to grow and be independent. And be respectful that you can never know everything that another family is going through.