Letter Fourteen

May 28th, 2007

Sarah,

I need to tell you thank you friend for being with me today. This was such an intimidating appointment to go and it would have been nearly impossible to show up today alone. I really needed your friendship and support on such a challenging day. I couldn’t have asked for a better person to have with me at the appointment today.

On one hand, I woke up this morning  hopeful to find out what is going on with Noel. But on the other hand I was scared to know what’s really going on with her. As we sat in the doctors office waiting for the doctor to come in I knew I  needed to be light hearted and cheerful. That’s because I cried all my tears last night. I thought of all the what ifs, I mourned the worst case scenarios. I know I seem lighthearted and easy going to everyone. But the truth is I feel so deep that it’s actually hard to let my true emotions out to others. 

That’s why today, when the doctor said that Noel was diagnosed with Muscular Dystrophy my response was, “That’s ok she can still be in the special olympics.” I was able to accept it that easily because I have already been imagining the worst case. As much as I was hoping that the results would come back as nothing, deep down I knew. I knew that her condition was more than just a traumatic brith. I knew.

I’ve been preparing to hear these words and today I felt ready to tackle it; whatever it may be. Through sports and adversity I’ve been preparing my whole life for these kinds of moments. The moments when I feel like the world is falling apart around me, and this is my moment to triumph over the obstacle. My optimistic nature also helps. I deeply believe that even in the darkest moments you can find light if only you’re bold enough to look for it. 

However, since we left the appointment, I’ve had a million questions come to mind: Wheel chair? Is that what’s in her future? Oh my gosh how do you even live life with a child in a wheelchair? The only thing I knew of Muscular Dystrophy before this was on Jerry Lewis’ Telethon I watched as a kid, and the fire fighters “Fill the Boot’ for kids with MD. I’m sure I’ll become an expert on this disease soon. The doctor said they were very hopeful and that her low muscle tone only seemed to be effecting her ability to move. 

You know I didn’t ask the question; but I couldn’t help but wonder will she ever walk? I don’t know if I really want to know the answer to that. I sure hope she does. It kinda seemed like they were saying hope for the best but prepare for the worst. She’s only 5 months old, that is so hard to do right now.

So I’m just going to focus on the positives right now. Since she’s had her feeding tube for a little over a month now she is finally gaining weight! They told me, even though we’re using the feeding tube for all of her feeds, to keep trying to have her drink a bottle. They don’t want her to loose the ability to suck or not be able to eat when she is older. I am just so glad that we can now focus on more things than spending the whole day trying to get her to eat. 

Thank you so much for being with me today at one of the most challenging appointments of my life. A friend like you means the world to me. I have no idea what this journey will bring but I’m sure glad I have someone like you in my life right now. 

Love, 

Tina