I Can Do Hard ThingsApril 17, 2012
I can do hard things!
I think I first read about this saying on Ann's blog.
This past week, I LIVED this saying. I did hard things. Several times I felt like I needed a Valium, but I survived.
Last Saturday morning I boarded a plane... alone... with a 6 month old baby. She was amazing on our flights and as we switched planes in Chicago. Several times I wondered what I was thinking trying to do this trip alone. It was hard, I won't lie, but I did it.
Lily and I spent Easter with my cousin and her family, and then Monday and Tuesday of last week Lily participated in a Turner Syndrome study at UNC Chapel Hill. We visited with Dr. Davenport, a pediatric endocrinologist, who is one of the leading researchers on Turner Syndrome, then Lily had a brain MRI, full developmental assessment, and blood taken. It is because of Dr. Davenport's research that girls with TS are starting growth hormone earlier and earlier. Lily and I were honored to meet her.
We are doing this #1 - to be able to meet with Dr. Davenport and gather as much information and get another set of eyes on Lily, and #2 - because it might help other girls with TS in the future, just like some of her previous work is going to help Lily now. We are not doing this because there is a cure, or something will change Lily's syndrome. Lily is missing a chromosome - it is not coming back. There is no cure for Turner Syndrome. It is just management of symptoms and challenges along the way.
During the appointments I found out some information related to Lily's height. Lily is projected to be 4'11-1/2" if you use Dr. Davenport's formulas using my husband and my heights. I was told that about 90% of girls will fall very close to their projected height based on using the genetics of their parents. Almost 5 ft... that would be great! That is without growth hormone injections too (which a lot of girls with TS take). But... as with anything else with Lily, Lily is not falling in the majority. Right now if she continues to track on her current curve (On the TS growth chart she is only 10th percentile - and she is not on the regular chart), she would only be 4'4" or 4'5" tall!
My biggest concern for her at that height would be the limiting factors making her life really difficult. She would need special equipment to drive a car, she would need to live in an adapted house to be able to do some of the "regular stuff" that most of us take for granted. She wouldn't be able to shop in a regular store. Because of this Dr. Davenport has recommended that Lily start growth hormone injections early - around age 1. We will be back at UNC in early Oct, and will consult with Dr. Davenport again to see if anything has changed with her curve. At that point we will likely begin growth hormone unless something changes dramatically.
After we were done with all the appointments I flew home on Tuesday afternoon.
Sometimes when I stop and think about this it all seems like a blur. There are so many times that things present themselves and I stop and think "I can't do this, its too hard!" I thought that at my 19 week ultrasound. I thought that as I was preparing to fly to North Carolina and have these appointments, I thought that as I was starting to run for the first time, and as I recently started running again. I thought it today as Lily was sick for what seemed like the millionth time since starting daycare back in January.
But you know what? Every single time I made it through. I can do hard things! I rock at hard things! And you know what else? SO CAN YOU!
What hard things can do you?