The first of what I hope to be many

I've been thinking about doing this for a long time...starting a blog.  I have journals that are busting at the seams and sitting unread.  I picked up a magazine last month and saw an award for a blog written by another special needs mother.  It has been so wonderful to follow her blog and see what she experiences...in another state, so far away, surrounded by different people of different backgrounds and yet we have the same feelings...many of the same experiences.  This isn't the first blog about a child with a disability, a genetic disorder, or cri du chat but I hope that it will help people to understand what it is like for a family, for the child, for the mother of a child with cri du chat.

The reasons why I didn't start before are many...I had a full time job while balancing the care of my children and running a household...I didn't want other people to see my weaknesses, my pain and misunderstand it or mistake it for me not loving my daughter completely...I didn't want to admit that I needed support in this new world (not so new now, it's been 9 years!)...my family raised me to think that privacy was the best policy.  Forget all of that now...I'm taking the plunge.

She was born 9, almost 10 years ago to a happy and excited Mommy and Daddy and a proud big brother...She came into the world small, not breathing, with a little tiny head and moles all over her ears.  Mommy and Daddy didn't really understand the words coming out of the doctor's and nurses mouths...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.  You see the geneticist informed Mommy and Daddy that small heads (microcephaly) can run in families and doesn't necessarily mean that there is anything to be worried about....he would see them all in 3 months to see how she did...So they walked around for 3 months, measuring every family member's head...charted them and brought it in to the geneticists office at that 3 month appointment.  The appointment went well.  The little girl was growing steadily, if not quickly, she was developing, if not quite to the normal standards...etc etc etc...Mommy and Daddy and big brother packed up their things from the geneticist office, with the little girl given a clean bill of health and started out the door...But stopped when the doctor asked "HOW DOES SHE CRY?"...Mommy turned and said, "like a kitten...everyone says so"..."SIT BACK DOWN PLEASE" says the doctor and began explaining about a "disorder" where the babies "cry like kittens"...You are kidding me thought Mommy but couldn't make anything come out of her mouth....Besides sobs...and there it is, the little girl was tested and found to have Cri du Chat Syndrome...

As I sit here now and think about it, 9 years later, I still sob thinking back to that moment...the moment that my life changed, that my family's life change, 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.