…over and over and over again.
Sometimes that’s the best way I can think to describe it. There are days, so many days, when it’s like a sucker punch that takes your breath away. It’s not going to knock you to the floor. You’re stronger than that. But, man, it knocks the wind out of you.
First, it’s the drive. The traffic. The hours spent headed to the appointment.
Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later. Only to wait until after 3 in the waiting room.
After that it’s the news. No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism. Well, because they are all so unsure. So they are afraid. And I get it. But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.
THEN after all that GOOD fun, is the drive home.
Usually all in all about 5 hours roundtrip. Whether it’s Manhattan or Long Island it doesn’t really matter. It’s 5 hours at a clip that you’ll never see again. Plus hours and hours analyzing…
About the only GOOD thing that comes from all these is the time spent chatting in the car. Because my kid is pretty cool, and I enjoy her company. I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…
Today it was the orthopedist. He operated on Meghan’s knee in May of 2015. It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus. After the surgery there was PT, then a 6 month follow-up.
In November he released her from PT, and asked for another 6 months. In April he was so bothered by what he saw he brought us back in 2 months. He was troubled by her muscle spasms, and her generally being unwell. The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes. The medicine that was supposed to help keep the uterus in check. The medicine that seemed to come up an awful lot in April as the source of many problems. We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.
Today the muscle spasms were gone. Evidence that they were caused by the hormone.
But, there was another pile of information to digest.
Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.
What about that right leg, will it ever match the left in strength? Do you think the foot will catch up?
No, it’s not likely.
Impact activities, even walking over a half mile, cause knee pain. Will this ever resolve? Can she do anything to help it resolve?
So, what do we do when we have to walk far distances?
And the conversation continued like that. He is actually quite well spoken, but today his words hurt.
He is a good doctor, a good surgeon too. But, he is honest. Necessary, And painful.
We got some suggestions for strengthening. And a script for a refresher with our favorite PT. Progress will happen. It will just be slower. It will take longer, and harder work than any of her peers.
We don’t use the word fair anymore. It’s all relative. Nothing is really “fair.” But, some days it’s harder to find the bright side than others.
Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.
Because the reality is what it is. There is both gratitude and pain in the mobility she has. Her drive, her focus, extends beyond limitations. She wants to be free.
Yet, somehow even on the toughest days, I have solace that there is a plan. And it will continue to unfold for both of us.
Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream. Tonight is not for the bright side.
Tomorrow will be different. Tomorrow is school. Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome. And tomorrow is drama. And tomorrow is swimming. Tomorrow will be too busy not to press on.
Tomorrow will be for working on ways to keep moving forward.
Tonight will be for resting.
Tomorrow is for