There are times when I forget that Hannah is sick. We are so lucky that she acts so healthy and is in no pain. But then I start thinking about it, and it really gets me down. I go through periods of feeling optomistic that we are going to dodge the “big bullet” and only have a minor complications from her Gaucher’s Disease. But then I see those abnormal eye movements, especially when her left eye gets a little stuck a bit when she is trying to focus. Bam, right back into reality.
Dr. S. said that we are doing everything that we can do and that we should be doing, yet, I feel like I’m not doing enough for her. I know, I’m doing everything I can, but why can’t there be more for me to do? Why won’t eye exercises strengthen her muscles even though the neurologic damage has already started taking place? I know the answer…it isn’t her eye muscles that are the problem.
It is what it is. Whatever intensity of Gaucher’s Disease, type 2 or type 3, at this point, me wishing that it was different or pretending that it isn’t there is not going to change what it will inevitably turn out to be.
I can hope, work, and pray for a treatment to help or even reverse the damage, but I still can’t change that this is our destiny. Will we be successful in finding a treatment for her in time? Or are all our efforts going to be an unsuccessful exercise in hope?
I know in my head that the odds aren’t in our favor right now. But my heart tells me that Hannah is going to be “different.” She just has to be.
You’re exactly right. It is what it is. Sometimes life sucks, sometimes it F-ing sucks. You are a hopeful realist and I think the combination of both is what is getting you through. Sometimes there isn’t a fix, sometimes your hands are tied and sadly, you know this. Keep fighting the good fight but remember to take a break once in awhile and simply just be with her and your family. I don’t pretend to be in your shoes, but we never know what life will deal to us.
Melissan’s last blog post..The Top 10 Money Saving Tips You Shouldn’t Need to Hear Again
This is the first time reading your blog. My thoughts and prayers go out to you; that you can keep on hoping while doing the things you need to do. Your attitude is outstanding, though I know there are times when even you don’t know how you can keep it going. Thanks for sharing this little known syndrome with us here.
Char’s last blog post..crewelspringpillow 005
As a mom of a child with special needs I know how you feel. Yes, things are what they are. You need to keep your hope and efforts strong. Enjoy your daughter but take time to take care of you too. You need that for you and for her.
(HUGS)
Nanette’s last blog post..Panic Attacks and Migraines
Hugs to you!!