Here is this beautiful little girl who has fought full force against her declined health and Cri du chat Syndrome. She is strong, happy and determined through it all. She really amazes me!
I’m over the shocked reaction of doctors who evaluate her and make the comment “her deletion is so large, and yet she is doing amazing”. Yes, I know she has a very large deletion of the short arm of chromosome 5, so what!
Oh really you say she will never walk or talk and if she manages to survive she will be so far behind she will not learn or be able to function? REALLY?? Have you seen her? Oh, you bet you’re a** she has survived and she will be walking and possibly even talking! But, what do I know I’m just a “mom”.
Even through all of her sickness she has prevailed and is determined to live and learn and this determination will allow her to grow to her full potential.
This past week she started using her hands, I cried! It was an amazing moment. A moment I have been waiting for since she was six months old. It has been difficult for me to watch her grow and not use her hands as most children do. I have wished for this for so long. I have been patient, presenting small food items everyday in hopes that she will pick it up and eat it without me having to use hand over hand. Well, she did it! Just a few days ago when I least expected it she reached down on her tray and grabbed a square cookie held it and ate it. I was in heaven!! I prayed for this day for so long, I know the use of her hands will open the door to independence.
My amazing daughter also decided that it was time for her to start standing on her own from squatting position without assistance, in the same week might I add. This is the child that could not flex her feet from such severe hyper-extension that took almost two months to flex her foot enough to allow enough range to do for her to move her feet. She endured so much pain to give her the opportunity to use her tiny little feet but we made it through. I am so very proud of her, she is truly my shining star! What a lesson in never giving up she teaches us.
She also mastered consoling her baby brother, she will place her hand on his forehead as if to say “it’s ok, I’m here” when he cries. She does not pinch or pull just a gentle touch, she starts from his forehead and runs her hand down his cheek. It makes my heart melt.
I have learned not to look at her chronological age because that is not where she is at developmentally. Her chronologic age is 29 months but developmentally she is 8-11 months. Her development is consistent and continuous and that’s what matters. So when I evaluate where she is developmentally I go based on 8-11 months and it helps me remain patient knowing as she grows the rest will come when she is ready. She is loved by her brothers and sister more than I could have possibly imagined! I am so grateful that she is surrounded by so much love.
Special children often endure more in there first few years of life than what many adults suffer in a lifetime. And they make it through strong and happy and somehow find a way to always give us strength. All I can say is “AMAZING”!!
Children are amazing. MY DAUGHTER IS AMAZING!! 🙂