This was a question posed by one of my Liebster award-givers. I was thinking about it over the weekend and found the real answer (i.e. Not Catholic Guilt!).
If you could have one wish that didn’t earn you money and didn’t magically fix something, what would it be?
It would be to have a diagnosis for Boo. It wouldn’t magically fix her or earn me money. It might earn an enterprising young med student his degree, but it wouldn’t “fix” Boo.
It would however, provide a compass. It would answer if we have Boo in the right therapies. What her prognosis would be. If she will continue to grown at her own rate or remain a peanut. If she will live alone, assisted living or need 24-hour supervision. Will the remaining hole in her heart remain benign or will she need surgery. Will she continue to turn blue in the cold or will she be able to play outside if there is a chill in the air.
I don’t have concerns for Allie. I know that she will find her niche in life. That she will be happy and successful in whatever she puts her mind and dedication towards. But I am concerned that Allie will be responsible for Boo after we are gone. I know that Allie will live on her own. When she is 18 and going to college. If she doesn’t go to college then when she gets a job. Either trajectory, it will be just that. A trajectory.
With Boo I don’t know if or when she will plateau. I question her life span. I wonder if I am doing enough to set her up for success.
Her genetics and neurologist tell me that the science will be available in the next 3-5 years to tell us “what” is “wrong” with Boo but not what it means. We might know that XAB chromosome is damaged but not how it will affect her. That might it might take another 5-10 years to know her prognosis. By that time she will be 15 years old. And then it will be more of what we have done than what the science says which will have impact on Boo.
So, if I could have a wish that wouldn’t magically fix things it would be two: One, for a diagnosis and two for patience to wait for one.
If I could I would grant your wish. ((hugs)) ~ Jamie
Ah, Kerri, I wish I could give you your diagnosis. And fix her, too. It doesn't seem fair that you don't know if her chromosome is damaged, whether she'll need surgery, and how all of it's going to affect her (and Allie, too). I worry a lot about when my husband and I are gone, too, not knowing how Tucker will be – whether he'll be able to communicate, work, and all that stuff.
HUGS to you ❤
Thanks, it's been a hard week. I needed the support!
Thanks, so much for gaining patience. But it has been that kind of week!
Your feelings are so normal for a Mom of this Beautifully Unique little girl!! So normal. And honest. And thought-provoking. And real. 😉
A lesson my Mom had to learn was this: “One day at a time”. Remember to be in the moment. 😉
Argh, my comments keep disappearing as I work on them! Sorry if these come up a bunch of times. What I was TRYING to say is I'm sorry for how scary and frustrating it must be not knowing what's going on. I hope you find answers soon. And you'll have to tell me more about Boo's neurosurgeon. He sounds like he'd get along great with the man who out in Silas' G-tube! Alana