For the 5 P Minus Society's Newsletter

I wrote this for the newsletter which came out today...

She was born 11 years ago.  Hailey Reyann.  Eleven years ago, we walked into the hospital in Sacramento full of hopes and dreams for our little girl.  We were so excited to have her and her big brother couldn’t wait to hold her!  She came into the world small, not breathing, with a little tiny head and moles all over her ears.  She was blue.  The nurses were yelling at my sister to turn the video camera off.  We didn't really understand the words coming out of the mouths of the doctors and nurses.  I specifically remember thinking that I could see their mouths move but they weren’t saying anything...microcephaly...What in the world is that??? They said out loud...ear tags...What are those???...Genetic counseling, a neonatal specialist, specialty nurses...It went on and on.  The next few days are a blur of feelings and crying and worrying and measuring other people's heads.  Yes that’s right, measuring other people’s heads!  You see the geneticist informed us that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about.  He said that he would see us all in three months to see how she did.  So, we walked around for three months measuring every family member's head...charted them and brought it in to the geneticists office at that three month appointment.  The appointment went well.  Our little girl was growing steadily, if not quickly.  She was developing, if not quite to the normal standards...etc etc etc.  Her dad, big brother and I packed up our things from the geneticist office, with our little girl given a clean bill of health and started out the door.  But before we could get out the door, we were stopped when the doctor asked "HOW DOES SHE CRY?"  I turned and said, "like a kitten, everyone says so".  Shockingly, the geneticist says, "SIT BACK DOWN PLEASE" and began explaining about a "disorder" where the babies "cry like kittens".  I really did think, “You are kidding me” but I couldn't make anything come out of my mouth....Besides sobs.  And there it is, our little girl was tested and found to have Cri du Chat Syndrome...

As I sit here now and think about it 11 years later, I still sob thinking back to that moment.  It is the moment that my life changed, that my family's life changed, that my son's life changed, that my marriage changed, that I changed.  I had to become smarter in order to navigate the strange new world and learn this new language.  I had to become stronger in order to get out of bed each day and face the questions, the concern, the pity, the whispers in the corner, I had to become softer for my son so that he wouldn't notice that I was becoming harder to everyone else.  I had to protect myself, my daughter and my son...It all came down to change.

The best laid plans...you can usually count on those not working out.

Just like when we planned to have a perfect little baby.  We planned to have a perfect little girl who loved ballet and girl scouts.  She would get married to a very handsome young man after she finished up her college life at Yale and became a brilliant lawyer.  Losing those plans, those dreams for her were some of the hardest parts in this journey.

After the shock wore off and we were able to do some research, we realized that a lot of what the geneticists and doctors had told us were not absolute.  They told us that she would never walk, that she would never speak.  We even had one doctor suggest that we give her up!  Once we started learning, we realized that early intervention was a miracle for children with cri du chat.  We got her started in physical therapy, warm water therapy, occupational therapy, speech therapy, feeding therapy, etc as soon as we could.

First she began to roll over and then to scoot and then a little crawling and finally walking.  She was able to pick things up and put things into containers.  Picking up her first cheerio was one of those moments that is burned into my memory!  All of those little milestones that parents don’t really think about were huge successes for her.

Now at 11 years old, Hailey is a very happy and well adjusted fifth grader.  She walks and runs and hops and even tries to skip.  She dances and loves music.  She is still learning things every day and we are so proud of her.  Hailey is learning how to speak now and has had hearing aides for about a year.  She loves babies and barbies.  She loves swimming, boating and most of all rollercoastering!  She has no fear and has been going on rollercoasters since she was tall enough!

She will never become a lawyer or go to Yale.  She will never meet a handsome prince and get married in a white gown.  She will never do many things that we planned for her in our dreams while I was pregnant.  But when you think about it, does any child ever fit into their parent’s dreams?  I’m sure that my parents dreamed of me going to Yale and getting married in a white gown to a prince and becoming a lawyer and I did none of that! 

So we are just lucky to have her in our lives.  We are lucky to feel her love every day.  And I feel especially lucky that although she doesn’t speak very much, she can say ‘Mommy’ clear as day!