Normal

My heart and brain are in total overload this evening.....it has taken me roughly 45 minutes or so to get Sophie to sleep.  Now I realize that this is not unusual for babies however the effort it takes to get our little one to bed is perhaps a bit much.  Getting Sophie to sleep is the time where her sensory issues are front and center.  I longingly remember the hours I spent ruining Cole's sleeping habits by rocking him....the smell of his sweet baby skin, the way he would almost purr with contentment, the selfish comfort I felt in holding my baby and knowing that all was right in our worlds.  Rocking is a word I am quite sure Sophie will never have in her vocabulary. 

As I bounced, swayed, squatted, hopped, swung, completed knee bends, and standing stomach crunches I felt like anyone watching me would think I was performing some type of ritualistic tribal dance...when in fact all of the above is required by my sweet little girl to get her to sleep.  At times the movements are so awkward I feel like Julia Stiles in the movie Save The Last Dance before she gets "rhythm" (don't knock it, it's a great movie).  At times I feel completely jipped.  I feel selfish and angry when I know I should be grateful that there is at least something I can do to get my daughter to sleep.   So why do I feel so sad? 

In thinking about the content for this blog my mind ventured to the thought of the special helmet Sophie will be fitted for on Tuesday that will help to reshape her skull.  I know that I have not allowed my mind to go there yet; I am in total denial.  I keep looking at the papers on deformational plagiocephaly but have not allowed myself, until now, to think about what that really means.  For those who don't know, because of Sophie's complete and total intolerance of "tummy time," the back of her head is becoming flatter.  This flattening of the skull can cause developmental delays and impede the growth of her brain.  Of course, this is not something we want, so we realize that the helmet is not optional. 

I realize that this next bit will sound completely superficial but in trying to be as open and honest as possible I am going to put it out there anyway.  We are stopped all the time by people who are mesmerized by Sophie ~the dark hair, big eyes, and most of all her sparkle are what draw them in; most are drawn in every time they see her ~ it is hard not to be.  Will people still see that glorious, marvelous, beautiful sparkle when she is wearing a helmet ~ a huge flashing light that screams SOMETHING IS WRONG WITH ME? Will they look at her like she's a freak? I realize that this should be the least of my concerns~it is treatable~it will be fixed~she will be fine~she won't remember it......but I will. 

I guess I just have to come to terms with our new normal.  It is what it is.  There is nothing I can do about it so I should just make the best of it.  When life hands you lemons, make lemonade and all that jazz, right?  I can't help but feel angry, frustrated, and now completely overwhelmed by this new normal.  I don't want this normal.  I want my old, loving, comforting "normal."  The normal that fit like a security blanket.  I am grateful for Sophie and for the lessons we are learning by being her parents.  We love her more than life itself and know that one day her normal will fit like an old glove; will be a part of us we could never imagine living without.  We just have to survive this first I guess.

I continue to be grateful for the therapeutic comfort writing this blog brings me.  Thank you for allowing me to share this with you.