“In the race of life, you need self confidence, courage and faith in your abilities to win the race.”
― Lailah Gifty Akita, Think Great: Be Great
We need all of the above plus a dash of humor to get through seasons when times are tough.
Our family has been busy with our own race. The kids are each sprinting through at their own pace and moving towards an uncertain finish line.
Cary Lynn has had a bunch of hurdles, rocks, and bumps thrown on her race way. Her race has been harder, but you can't keep this girl down. We had been noticing some concerning symptoms and since she has a shunt we needed to get it checked out. Her old neurosurgeon is back and we were excited to get in quickly with him.
He pulled up pictures of her from when she came to the hospital until now. While the good news is her shunt seems to be working and doing it's job, the bad news is that her brain isn't. When you are born with significant challenges and have need of intensive intervention to live you are going to see damage. Cary Lynn's brain has had time to adjust to the trauma that it went through and due to it's severity, some of her brain has died off and disappeared. So where there used to be brain, fluid has taken it's spot, because you need something there. Also her gyri and sulci (brain folds) have taken a beating as well. They used to be bumpier and are now smoothing out.
What this means, well it means she has brain damage. It can also impact her life, functions, and longevity. Along with a new diagnosis of mitochondrial defect, it really threw me for a loop. I know things can be hard for her, but why do they have to be this hard??? It's frustrating for me because I just don't think she needs one more thing thrown at her.
For Cary Lynn it's another day at the ranch. The kid doesn't let anyone or anything define her. She's continuing to rock her at home therapy program, demand books about birds, and annoy her brother by kicking him and screeching at him every time he venture near her turf. For a mom who has long ago decided that normal is a setting on the dryer, these moments of regular family life are desperately appreciated.
Marvin's race seems to have hit a smoother path and my runner is taking life in stride. He's started school again. We were all really hesitant, but Marvin is thriving. The school has gone above and beyond my expectations. They listened to his diagnosis, have adapted to his needs, and are helping him become more independent. This is the first school that he's been at that I don't worry about him during the day. His team has noticed a marked difference as well. My only regret is that we didn't find this school last year.
Marvin is having genetic testing done as well. With a diagnosis of Autism you can have some other problems, like Fragile X syndrome. His Dr. wants to rule out some things. Marvin was hoping it would get him out of chores, but no such luck on that, HA! He insists if he has it he will be an X-Man and really, there isn't any arguing with him so I just say whatever and move on.
We'll keep on running. My kids run their races like a boss and it's all I can do to keep up. With their strength and independence they are going to give it all they've got and cross the finish line champions.
No comments:
Post a Comment