Battles against terminal illness, anxiety, and life!


There have been many pivotal moments in my lifetime.  I look back at them and mostly smile.  They have all taught me so much.  I have always looked forward to sharing that hard-earned knowledge with my children.  Then, it took us so long to create our much fought for family.  When I think of all that both of them will face, I can’t help but think that so many of my moments pale in comparison. 

Growing up I was deathly afraid of the dark.  I was always armed with a flashlight, and truth be told, I’m still not a fan of the dark.  Perhaps it was the idea of being caught unaware, that there is some hidden danger that I won’t see coming.  Lately, I feel as if I’m constantly in the dark.  It’s as if there is always something new that we were unaware of, things that we did not know about A-T.  Just when we thought we had heard the worst, we learn about “exploding veins” and “internal bleeding.”  No need to go into details, I felt nauseous after the word exploding.  Explosions are never a good thing.  Despite the darkness, we constantly try to find the light.  I’m certain there is a really good joke in that last sentence.  It’s too bad I’ve never seen Star Wars.  I know.  I know.  It’s just pains me to no end for all the hell this condition can raise.

Braden’s IEP went well.  I feel comfortable and confident that he will have a wonderful preschool experience.  I really really like his teacher, and I’m not saying that just because she’s probably reading this.  I genuinely like her.  She feels like somebody you would turn to when you need a really big hug on a bad day.  Somebody who would bring you soup when you are sick.  I trust her with my son, and that is huge in my book.  I will say that our Braden is one smart cookie, but we didn’t need a test to tell us that.  🙂

Today Braden enjoyed some chicken noodle soup at the new Earth Fare store here.  He rubbed his belly and said, “Mmm…yummy!”  His Prevacid has given him back the gift of eating.  While I still don’t think he eats enough, he is eating monumentally more than he was prior.  We are no longer desperately concerned.  Now, he will at least eat something and not outright refuse to eat.  Watching him tell me that something he was eating is yummy, made us all smile ear to ear.  I went and bought a small container to bring home for later, since he loved it so much. 

Thanks to some awesome donations, we also picked Braden up a portable dvd player to bring on our trip to Johns Hopkins.  We’re hoping this will make time spent on the plane, in doctor’s offices, waiting for doctors, and in the car commuting more bearable for him.  Perhaps Thomas will distract him while the doctors talk to the grown ups. So, again, thank you to all of you for making something so small that means so much possible for us.

Remember to hug those you love extra tight, because life and love are a gift not a given.


Comments on: "Strong" (1)

  1. You’ve never seen Star Wars?
    I’m glad you like his teacher and so glad that he’s able to eat again too.

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