Wednesday, May 7, 2014

Letter #22: November 30, 2010

5:00 am

I have made the decision to journal this journey as therapy for me and to document changes in Cameron’s development. 

I kissed my baby goodnight last night, thinking that that might be the last seemingly “normal” night with her without a diagnosis.  As much trouble as I thought I’d have falling asleep, I did pretty quickly.  I had 2 dreams that woke me up though: one where the doctor called to say that the blood work came back positive; and one where she called to say it came back negative.  Since I woke from the second dream at 2:30am, I have not been able to fall back asleep. 

Researching Rett Syndrome on the internet is making me fear more and more that the blood test will come back positive.  But I don’t understand how the blood work back in June could be wrong, as little of a sample as they tested for it, how could it be wrong?  This waiting part is so difficult. 

Our families have been so wonderful; making sure someone is here to take our minds off of the waiting until we find out.  Today my parents are coming over to be with Cameron and me.  I keep trying to prepare myself for the phone call.  I don’t think there’s anything you can do to prepare yourself though. 

I’ve been involved in sports and around kids my entire life so it was no big surprise when I went into education, Kinetic Wellness.  As a teacher and coach, I’ve always needed a “game plan.”  Whatever the news is today, I need a plan.  I need to know what’s going to happen with my child and how to best fulfill her needs. 

I’ve been very fortunate to be able to stay at home with Cameron.  It’s been trying at times, especially the past year, not understanding why she isn’t developing like the typical baby/toddler.  I wouldn’t change it for anything though.  I could not imagine going to work while someone else was with Cameron at home.  I could not imagine coming home, asking a nanny what Cameron did, how she behaved, or what we need to work on in therapy. 

Whatever the outcome is today, Billy and I will be a united force for Cameron.  We are fortunate to have such a large positive support system of family and friends.  We are so lucky that our family members want to play an active role in Cameron’s life.  I need to start taking better care of myself for baby #2 arriving in February.  I need to start letting others help out more. 

The phone rang and I let it go to voicemail.  For some reason, I needed it to go to voicemail.  After 30 minutes, I checked it.  It was the doctor’s assistant telling me that the tests are very specialized and we wouldn’t get the results for 3-4 weeks.  She said to make a follow up appt in 6 weeks and to get the hip xray and swallow test done before that appt.  Why did the doctor tell me to call on Tuesday then?  I haven’t slept in days only to hear that we wouldn’t hear for another 3-4 weeks?!?!  I’m trying not to read any more into that; it is what it is and the test take a long time. 

Now, I have no idea when that phone is going to ring again wither Cameron’s results.  

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