Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.
Over the last several years she has spent more time living in “recovery” than just living.
She dropped 16 seconds total off her event times at this month’s meet, and 17 last month. Insanity. Except to a young lady who is now growing into herself, and her abilities.
She wants to swim. Hard and often.
She wants to soar academically – no average under a 95 will do for her.
She wants to act, and sing, and be on stage.
She wants to participate in her youth group, and retreats, and live her faith.
She wants to raise community awareness of Cowden’s Syndrome and rare diseases.
She is on the move all the time. I know, because I am with her. Or helping her stay organized. Or transporting her at least.
This weekend we drove 200 miles. Today at least another 60. LOTS of time for car chat. Lots of time to get to know each other well.
Sometimes she drives me crazy. Sometimes I frustrate her so badly she wants to scream. Sometimes she does homework, reads, or works on projects. But, lots of other times we talk. About anything and everything. And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car. I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.
As a matter of fact after today’s appointment, she could easily be in the front seat. All the time. At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is. Which I sometimes have to remind myself when I am busy expecting her to have it all together. Sometimes she still needs me to help her along.
Today was the knee surgeon. Six month follow-up. He sees the shift in the patella. He feels the scar tissue, and the clicking. But, he said, she can wait. She can wait until she’s ready before he cleans it out again. With Cowden’s it’s a fine line. How much pain can you deal with? Because every surgery will lead to an overgrowth of scar tissue which carries its own issues. Drag your feet. Know when enough is enough.
Next we will have an MRI to check on the AVM. As long as that’s stable, we should have a bit of time. A bit of time to do some things besides recover. A bit of time to be a bit more like a “normal” busy 12-year-old. Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.
Tomorrow she goes to another doctor. And about this one I just pray. A lot.
In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.
Plenty to preoccupy the mind. In our immediate and extended family.
One day, one event, one obstacle at a time.
I did start my Christmas shopping. After 2 years of holiday sadness, I am craving joy, and celebration. I am craving the anticipation of the birth of the baby Jesus. I am determined to remove myself from the holiday hustle and bustle. I am determined to set my mind right. Because none of us ever know. Really. And there is no promise of tomorrow. Really.
But organization makes me happy. And it’s about being happy. And making the most of it all. All the time.
beatingcowdens 