It's been awhile since I last blogged, I almost feel like I
haven't had the time (all though I know that's not actually true) My life has
been a whirl wind it feels like, with high highs and low lows. Some days I feel
like I'm barely getting through....
In November we welcomed our baby boy Isaiah, and he has been such
an amazing addition to our family, he really is an amazingly good baby, and it
has been exciting for us to watch him grow and change. It is so strange, yet
exciting to us now, to have a baby that sees so well....
November was definitely a high point for us.
Fast forward to 2013, and here I am now feeling completely and
utterly lost. Just when I started to feel as though we were getting a handle on
the visual aspect with Sophia (in terms of, therapies, resources available, and
support groups) we get an entirely new revelation....
Now I can't really say I was surprised, when Infant Development
agreed with me that there was something more then just albinism going on with
Sophia; something more then the visual impairment that seems to be holding her
back. After reaching out to a variety of people in the albinism community, as
well as attending a few conferences through the Canadian National Institute for
the Blind, we reluctantly started to realize that it may no longer just be her
vision affecting her development.
Last week (after jumping through what felt like way to many hoops)
it was recommended to us that we officially pursue an assessment for autism. With
that Sophia's name was officially added to the lengthy wait list at Sunny
Hill/Children’s Hospital for public autism assessments. I will admit that all
though I wasn't surprised by the Doctors recommendation, I was secretly hoping
that he would disagree with our concerns, and tell us that her delays were all
common for someone with Albinism....
We returned home, and began to sift through various informational
websites, brochures, and private testing options, with no real idea of where to
go next, and so many "to do's" now on our list…
I never expected to be here
again… Isn't it enough for her to be
visually impaired?? I keep asking, "why her; why does it have to be this
too? Isn't her life going to be hard enough as it is?" I remember the
devastation I felt upon the first diagnoses of her visual impairment, I
remember not knowing where to go, what to do, or what to expect... this feels
all too familiar...
I'm sitting here now, reminding myself that; we are stronger then
we were last time that, just like last time, this is the lowest of the lows,
and that it only gets better from here. It's not actually as bad as it feels
like its going to be. I keep reminding myself that, one day we will look back
at this, (just as we do with her visual impairment) and think, “if only we
could go back and tell ourselves how
much better it ends up then what we thought.”
99 percent of me believes that it’s not the end of the world; but
then there is that 1 percent of me that takes over and I start drowning in
doubt. I don’t know what to expect as we pursue the diagnoses, but I have to
let go of the fear.
In the end two things in
particular stand out; 1) she’s too young to remember going through all of this,
and 2) she’s happy. We will just keep putting one foot in front of the other,
one step at a time. If success is the sum of small efforts repeated day in and
day out; then we will find success with her…that I know…and in knowing that; I know it’s all going to be okay.
