Coming to terms with her diagnosis

When I found out I was pregnant I could not help but plan and dream of what my child's future was going to be. At 19 weeks we were told she had spinia bifida and we had to shift those dream alittle. So now maybe she won;t play sports and may walk a bit late, but for the most part should be able to lead a pretty normal life. We expected her to be in NICU for a couple of weeks then home. As those couple of weeks changed to a month then 4 months we realized that life would never be "normal".

A month after her birth we got the news that she had a chromosome abnormality*. I remember sitting in a conference room near the NICU surrounded by doctors, my husband and parents on my right and my daugther's primary nurse, Lana, on my left. The genetic counselor telling us there was a problem with her genetic code and that she would have mental retardation and probable would never be able to take care of herself or live on her own. My world came crashing down around me. I burst into tears and heard nothing else from the rest of the meeting.  How could my prefect baby have much a terrible future?  She was suppose to go to college, meet a nice man, get married, and give me grandbabies.  Not being living with me for her life.  I was angry at the doctors, at the world, at God.  My friends all had this perfectly health little babies.  Why were their babies fine and mine wasn't?  I had to moron the loss of all of those dreams. 

When we first got her home some times it felt more like we were her caretakers instead of parents.  There were lots of doctor's appointment to go to, our home was invaded by nurses at night, there were all kinds of medical equpiment that now took over our cute nursery.  Now though I feel more like a parent that just happens to know alot about Riley's medical conditions.  People tell me that I could be a nurse with my knowledge, I turn in tell that I only know alot about a little.  Mind we still have lots of doctors that we see, but it is less often.  And the nurses are still here every night, but they are more like family then stangers.  The medical equipment, well that is still a big part of Riley's room but it is normal now. 

Riley is now 15 months old and I have accepted her.  There are still times when I am talk to my friends about their kids or we see a another child that is Riley age or younger doing things that she can't do yet and I get sad. Then I tell myself that I can't compare Riley to all kids.  She will reach her milestones in time and when she does it will mean even more to us then if she was like my friend's children.

It is weird how your definition of normal changes.  We recently found out that Riley has moderate hearing loss and will need hearing aids, but it in the long run of her short little live it seems like nothing.  I mean I just have to makes sure she wears them and they are batteries.  Easy Peasy.

But this smile makes it all worth it:

*PS I hate that term "chromosome abnormality" she may not be exactly the same as a "normal" child but which child is. Unless you are an identical twin no one chromosomes are exactly the same. So how can we really define normal. Riley is going to be who she is going to be. She will have her own definition of normal.