Carson Leigh Blanda

Carson is my amazingly pleasant daughter, who was diagnosed with Aicardi Syndrome in September, 2006. She has endured many obstacles, trials…and triumphs in the little time she has been on this earth.
Since she was four months old, she has regularly been visiting Children's Hospital of Pittsburgh. She had been admitted over 10 times in the first year of her life. Her hospital stays varied in nature: Aicardi Diagnosis (Agenesis of the Corpus Callosum, Arachnoid Lesion, Infantile Spasms, Eye Colobomas, Butterfly vertebrae), RSV/pneumonia, Rotavirus, Seizure activity, ACTH, the Ketogenic Diet, G-Tube and Nissen surgery and VNS Therapy surgery. This included, but wasn't limited to the reasons for her admittances. She had just about been on every different seizure medication there was to offer…at one point she was on 5 different anticonvulsants at the same time. However, even through all of these unpleasant moments in her life, Carson still remained our little soldier….as she continues to be to this day.
It is amazing how much a tiny little person can make a world of difference. I honestly believe that my daughter has taught me more in my lifetime than I will ever teach her. She has a way of lighting up even the most dismal situations by a giggle, smile, or smooch. She is truly a form of therapy in an otherwise hectic lifestyle.
It took me awhile to share our experiences with all of you; our extended family, because I wasn't sure how I wanted to explain Carson's story. I didn't want to share the negative, without focusing on the postive…I didn't want to enable the feeling of heartbreak without enhancing the joy of triumph. I wanted to be as real as I could, while maintaining the hope and faith that I believe we all should have as individuals, as well as families.
Yes, Carson is delayed developmentally. She does not independently walk. She does not speak sentences, or perform the duties or possess the luxuries of her peers; But what Carson does is far more special and precious than words can express. She can make someone smile immediately by simply being herself…her adorable, loving self. She helps to make all of us realize the importance of each moment, each stride, each gift…that we often take for granted. She helps us remember what it was like to be young again…when time stood still and everything and everyone seemed happy and content. The gift of time: What a beautiful gift. Too often we forget that! She has made tremendous accomplishments since she was an infant. It was very hard for her father and I to accept that she was reaching her milestones earlier than most children before she was diagnosed. However, we knew at 18 weeks gestation that Carson was going to be unique…and we welcomed that with open arms…and are so very glad we did…and are even more blessed than we were before she was born. Seizure medications further delayed her development, however, we did what we felt was right and necessary at the time. We educated ourselves as much as we possibly could to ensure that we helped Carson to our best potential. She was our first child…and is our only child at this point in time.
With the constant support of our family, friends, Carson's doctors, therapists and nurses, we are able to give her the best possible care she could have. And trust me, even knowing that, you will always question yourself.."Could I have done more?"…"Should I do more?" The only thing I can say is, "I will continue to do all that I can to make her healthy and happy."
Carson continues to receive multiple therapies including: Physical, Occupational, Visual, Speech and Aquatic. She has annual appointments with specialists at Children's Hospital of Pittsburgh. We are currently participating in Genetic studies for Aicardi Syndrome and continuing to educate ourselves on current issues and topics involving Carson's diagnosis. "Knowledge IS Power."
No one is going to tell us how our daughter's life is going to be…or when it is going to end. CARSON is going to show us who she is…what she is capable of…and what she will become. With continued faith..all things are possible. Albeit trying at times…knowing anger in faith…is knowing you believe….knowing you believe is knowing you care…knowing you care is knowing you can make a difference. Making a difference is exactly what our girls need. We can't give up…not one of us…because we WILL find answers…we WILL find resolutions…we just need hope….WE are THEIR hope. God bless all of you!