As a young child, maybe 6 or 7 years old, I used to wake in the middle of the night crying with terrible ankle pain. Read any Marfan forum, and you’ll see parents posting about their children suffering the same ailment. Mom would rub my ankle, put on a very heavy sock or two, and sometimes give me ibprofen. Eventually the pain happened less frequently, though sometimes as an adult – especially if it gets colder suddenly – I’ll wake up and need to grab the special socks out of my drawer.
J, almost 3, has been waking up recently with those familiar tears.
After J was born, I remember writing that I didn’t expect his diagnosis to really impact him (or us) until he was older…maybe 5 or so and going to kindergarden, where we’d have to make decisions about gym class and, perhaps, medication. But here we are, not yet 3, and Marfan has already touched him in so many ways: sleep apnea & oxygen, RSV, asthma, feeding issues, speech problems, motor delays. His first echo after starting medication is coming up in a little over a week. And, by and large, these are all Marfan problems that I have no experience with. I didn’t predict them.
But the other night, when I scooped him from bed to cuddle in the rocking chair while I massaged his ankle…that I knew. While we rocked I whispered to him that I understood. And I realized that although simple, this is one of what will be many manifestations of what it means to have made the decision to open ourselves up to having a child with Marfan…the pain of truly knowing his pain, and the comfort in also knowing the remedy. The double edged sword of being able to say “I’ve been there.”