Hello

Okay so this is all very new to me, but I am attempting to blog, for a variety of reasons, primarily however to sort through the various emotions I have been going through of late. Let me explain, but first a little background on me.

 I am 24 years old, married, and mother to my beautiful little girl, Sophia Grace, born March 2011. I guess it all started when she was born and the first thing everyone commented on was her hair. I'm sure you're wondering what was so unusual about a baby with hair? Well it was white blond, and unlike anything anyone had ever seen before. Of course I think being a new Mom, in a state of euphoria, I couldn't fathom that it was anything but normal (and I use normal here in the sense of what is seen everyday) I just remember my Mom telling me that my hair was that blond as an infant. It wasn't. At 4 months old, at her regular checkup at the Doctor is when it all came to light. I knew in my heart of hearts that something was different with my little girl, seeing the way other children "greeted" their parents with a smile when they entered the room, I had never experienced that with Sophia. In fact, she had never looked at me. When i brought this concern up to my doctor I was sent immediately to an opthamologist for a check up. Later that day I would be informed that my daughter was blind. The cause of her blindness; albinism.
    At first I remember feeling guilty, it had to be my fault. I cried for a week, and I feel horrible admitting this because well, how terrible of a mother does it make me to feel completely devastated that my child was only albino, and blind, of all the things that could be wrong with her...   I think that we, or at least I have a tendency to plan my life, all the details and events, and I planned hers too. Foolish? Yes of course, but I think that all parents would have to admit that they've imagined their little ones first day of school, her wedding day etc. I will admit that at the time of her diagnoses that I had very little information on what it meant to be blind, and even more limited was my understanding of albinism. The devastation I felt was thinking of all the things that she wouldn't get to see, or do; driving was the main one that came to mind, but their were plenty of others. I remember feeling isolated; like none of my friends could understand, and even being around them at first was difficult.

  Well it's been 5 months since then, Sophia is now 9 months old, and I'm proud to say that she is thriving for a child who is visually impaired. Each day is going to be a challenge, I am told that the first 3 years will be the most difficult for all of us, as we are coming to understand what she is capable of. I have since learnt so much about raising a child with albinism, (of course I have much more to learn) but each day I learn a little more, and I'm excited to continue to learn as I watch my little angel grow.

So why am I attempting to blog? 1) For Sophia 2) to create awareness 3) to document my struggles and successes raising a child with Albinism. To be completely honest, some days are hard, I feel like I fail in some way everyday; maybe that's how most Moms feel, maybe not, but I'm hoping that writing out my feelings will help me . I know that life for my daughter will be difficult, and sometimes that thought kills me, but then I look down at this little angel of mine, and I know that we will get through it together.