Snip Snip

When you have a child in your life, you would do just about anything that would make them happy.  You would move the clouds for them, so that they could feel the sunshine on their cheeks.  You go out of your way to make sure that they have everything they need, and quite a bit of the things they want.  You want them to be happy and you want them to be accepted and you want them to thrive.


When I found out I was pregnant with Cote, I was nervous.  Bo was only about 5 months at the time and we were in the beginning stages of finding a diagnosis for him.  As the months wore on, and the severity of Bo's condition became apparent, I started to become filled with trepidation.  I contemplated whether or not I would be able to handle Bo, let alone my high-strung Gage and a third possible Special Needs baby.  Then the day came that I had my "find the gender" ultrasound.


Euphoria.  I was having a girl!  Visions of tights clad, fat little baby legs learning to walk filled my visions!   I saw golden ringlets and rosy cheeks as she chased kittens.  Thick long lashes framing big blue eyes looked at me in my fantasies, as her rosebud mouth requested nail painting sessions.  


Throughout my pregnancy I focused on these visions to get me to D-Day.  On that day, I was strapped down onto the C-Section table with my mom at my elbow.  Everyone in the delivery room was nervous because none of us knew what the outcome would be.  As they fished Cote out of the water bed... I couldn't breathe.  I heard her cry a pretty pissed off little cry and my heart swelled.  As they were cleaning her up, my mom turned to me crying and said, "Oh Rachel, she is so strong.  She is so strong!"  


Those words will forever be with me for three different reasons.  The first being that in that moment, I realized my mom was afraid.  That whole time, she had been afraid.  The second being that at the moment of delivery, before even being told she was beautiful, I felt the relief in the room that she was even crying.  Thirdly, that looking back at the moment I know now what we didn't know then.


Cote did pretty well that first couple of months.  All her tests came back normal at her newborn screening.  She was thriving and was definitely not in Bo's realm whatsoever.  At her two month appointment, things were still going well.  She was right on track and I stayed optimistic.  


Right before Keith came home, I started to notice a little lagging with my Cote... and soon after his return I brought Cote for her 4 month checkup.  That day Cote was diagnosed with Hypotonia.  I couldn't believe it.  My STRONG baby?  How could this be happening?  Everything about her was so much different from Bo. She ate better, she moved her hands, her fingers, her legs, her head.  Nonetheless... she had Hypotonia.   Over the next few weeks Cote became severely sick with RSV.  She was diagnosed with a compromised immune system and we slept in the chair for the next few months.


Everything about Bo and Cote's identical diagnosis' are completely different.  Their Hypotonia is different, their Global Developmental Delays are different,  their Strabismus is different.... yet Cote still has the same diagnosis.


As the months have wore on slowly into years, I have come to terms with the fact that Cote is a different child than the one I imagined while I was pregnant.  The child I was picturing was much like the daughters of my friends, but my Cote has glasses.  She has SMO's (foot braces) and special shoes.  She had to wear hand braces for her first two years.  She has sun sensitive skin and eyes.  She has poor teeth what have to get pulled and capped this month.  Her body is beginning to make spastic, jerky movements.  She has to wear clothing without buttons and that are not confining.  She is still not very physically motivated.  She is very far off of that little girl I fantasized about, except....


She has the hair.  The ringlets.  The softness.  The golden sheen.  


I had to cut it all off yesterday.  Cote rubs the back of her head all day long until her hair is like a hard helmet... and twice a day I have to attempt to work it back into sanity.  She cries and screams in pain... and fights the entire process.  She see's the brush now and automatically starts to tear up.   She knows what the brush means and it breaks my heart to have to do it to her.  Yesterday as she sat sobbing when Melissa tried to untangle it, I made the decision to just end the misery.  We loaded everyone up, when and sat in the grass, and I began cutting that last fantasy free.  I cut her hair into a short elevated bob.  It is extremely short up the back and rests a little above her chin in the front.


For the rest of the night and into this morning, I mourned.  I mourned the fact that I could not give Cote that last little piece of femininity.  As you have read this I am positive that you have started to wonder if I am ashamed of the fact that Cote does not look "typical".   You have wondered that because I have allowed to let this blog take that tone.  I am going to bring you back to my first paragraph...


When you have a child in your life, you would do just about anything that would make them happy.  You would move the clouds for them, so that they could feel the sunshine on their cheeks.  You go out of your way to make sure that they have everything they needs, and quite a bit of the things they want.  You want them to be happy and you want them to be accepted and you want them to thrive.


During my pregnancy and Cote's first two and a half years, I have led myself to believe that looking, acting and dressing like other little girls is what would make her happy.  That it would be her only way of being accepted in this closed-minded community that we live in.  It has never been my shame that has fueled my desires, but more my fear.  I fear for the day when she notices how people are looking at her... and sometimes blatantly NOT looking at her.  As a parent we want our children to always be accepted and loved and sometimes we believe that blending in is the best way to do that.


My daughter is beautiful.  She has glowing skin and bright iridescent blue eyes.  Her adorable glasses accentuate large eyes that mirror those of her daddy.  Due to wearing hand braces for her first two years of life, she can hold all of her long elegant fingers open.  Next week we will be going to pick up her new SMO's (foot braces) which will have a new fun print on them.  We picked out trucks with red straps because that is her favorite right now.  She will have a few less teeth, but she wont be in pain anymore.  I am going to start dressing her in more tutu's because perhaps her movements are her way of dancing?  


And my Cote has short hair because now she can sit in my lap and just cuddle.