My daughter Caitlin, my oldest child, turns seventeen tomorrow.
Writing it, saying it – doesn’t make it any more believable. Wasn’t I just carrying her in a backpack? Weren’t we just painting the bedroom pink and thrilling over Princess sheets and the new, big girl bed? The sigh at the argument over whether she could wear the red sparkly slippers to the park seems fresh on my lips. The long battle over when to get her ears pierced….when to be able to wear lipstick – still a catch in my throat. Now, the America Girl collection is packed on the top shelf of the closet, above the fashions, the stylish boots (that are almost my size) and collection of nail polish and makeup…. and she would like a piercing at the top of her ear now, please.
That doesn’t even begin to touch the arthritis journey… and what that has meant to her childhood.
And here we are, on spring break, touring colleges. COLLEGES. Because she will be a senior next year. Hypothetically, in a mere 17 months, she could be moving away to go study. Away. From me. Here we are, with a young woman who drives and volunteers at the hospital. Who is interested in possibly being a nurse – or possibly pursuing business marketing. Here we are, looking at dorms and being handed flyers from student clubs, and examining the amenities of the rec centers and libraries.
This is a period of much transition. I am trying so hard not to be a helicopter parent – and yet, my soul is not supporting free range. Every time she wants to go to a new friend’s house, go to the beach, drive out of a ten mile radius- I feel like it is a fresh examination of the balance between letting her gain experience and a sense of responsibility, and holding the reigns tight enough that I KNOW she will be safe. But always, there is the voice that reminds me…. It won’t be long until I am not there – until she may not be here. So, I want her to stretch the wings here – where I can pick her up if I have to, help when I can- discuss the lessons….. instead of her doing things for the first time when she is miles away.
The question of how arthritis might come into play is a big one for us. Even though Caitlin is still in remission, still off all medication……which is a miracle and mystery to be sure…. there is no guarantee with this disease. I was at a meeting last month and had a long talk with Mike O., whose son was very much like my daughter. He was in remission – doing great – until his first semester at college, when he flared so badly that he had to take a semester off. Three years later he is still struggling to get the disease under control again. It is affecting his grades, his energy, his ability to live away from home, his ability to hold a job. That story, which I have heard a number of times from other parents and from so many doctors – the story of how juvenile arthritis dormant through teen years comes roaring back just as somebody embarks on adulthood- hangs over me like dark clouds.
So – in all the moments that we are trying to thread with our gratitude that things are going well, we are also trying to prepare for the possibilities. Seeking that balance of wanting to enjoy all of these exciting days, and trying to prepare this young woman for what may happen.
Even though I have not been the best at building her skills for this transition (which is another post coming soon), I am very impressed with the questions she is asking and the points she is considering.
Where is the health center? What are the hours? Where is the closest rheumatologist? How many doctors and nurses are on staff? How big is the campus? Where are the buildings where my classes would be? Where would I keep refrigerated meds if I need them? Where would they be delivered? Would I need a locking fridge? Does the campus have a policy on locking syringes? Does the campus have an office for disabled student services? What kinds of accommodations can I request?
What strikes me – is that these questions are all intellectual for her – not emotional. In the last four years, she has essentially been off meds. For a few short months, she was on Humira and MTX…. and I administered the injections. She is on the edge of seventeen, and she never gave herself her own shot. Never. What if she has to for the first time… in a dorm room…freshman year of college?? I don’t know that she really understands what that could mean. It’s been a long time since she had to understand daily life with flaring JA. In my heart, I think there are so many things she has forgotten – a blessing and a curse, potentially.
She is on the edge of seventeen. There is a nice, talented choir boy / computer geek (her words) who would like to take her to junior prom… but he has to come have sloppy joes at our family dinner table before he can ask (our rule). He will be the first date really – one of so many firsts on the horizon. She is still a teen – still tempted to roll her eyes at our parental assertions – but now I also hear her voice saying my words to her younger brothers and I have to stifle a laugh. She is on the edge of adulthood – of planning college, planning adventures, and already feeling some sense of nostalgia over her childhood starting to show in the rearview mirror. Every time we take a family picture, I have to stop myself from getting all blubbery at the notion that soon it will just be me and all boys… because she might not be with us on Easter. Or Valentine’s Day. Or some random Sunday morning pancake breakfast.
She’s a great kid, in my unbiased opinion… and I tell myself all the time that the titanium in her hips is a metaphor for her strength and unbreakable spirit. That no matter what challenges come, she will be able to persevere and overcome. I tell myself that it was enough test already, enough struggle and being forced to use her very last spoon just to get through the day… there doesn’t have to be more of it. Right?
The Edge of Seventeen, with the world waiting. And I am standing behind her…. holding my breathe. Happy for every great day, every accomplishment. But also Praying and Dreaming. Still Dreaming of a Cure.