Good day everyone....
Well the flu has swept it's way through our house over the weekend.Everyone is better,exept for Jaydey.When I sit there looking into her sick little face.I remember when she was born.When we realized our little girl was sick.That there was something wrong.I did as many mothers probably do.I silently promised her and God that I would love her and take care of her.That I would protect her and do whatever I could to keep her safe and give her everything this world has to offer.Well today,knowing she has CdlS this promise holds so much more meaning to me and our whole family.I remember the day the specialist came to St.John and diognosed her.He gave her an hour examination.Then said,"Your daughter has Cornelia de lange Syndrome."She was 2 1/2.He asked me if I had any questions.I was in shock.I remember asking if it was like down syndrome.He said she might be considered worse off than that.I quietly made my way with Jayden to the waiting room where my sister was waiting.I must have looked like I had seen a ghost.She asked me what the doctor said.All I could say was,"He said she has a syndrome called CdlS.I don't even think I had an expression on my face.The next thing I remember was getting in the van crying hysterically while my sister held me and said those words,"Everything is gonna be alright."There were alot more tears that evening as I told the family one by one.I didn't even know what CdlS was,and wondered how I was ever gonna find out.
Then I remembered the promise that I made to Jayden.I reasearched it,and found out how rare it was.How life could be for her,for us.That there were possably only two people in all of NB.We were so scared.Even scarier,was when we took her to all her doctors and they,said,"what's CdlS."
That is when I decided to take matters into my own hands.That God does not give children like Jayden to just anyone.There was a reason.So we began this journey with Jayden in her world and day by day we are doing all that we can to love and care for her.To protect her and make her world a better,more understanding place to live.A web site here,a cause there,a flyer,an online journal.A couple of signs on our vehicle.It brings her one step closer to where her and others like her deserve to be.A place where they are loved,protected,and understood.What would you do if you had a child with CdlS?Paul & I want to thank you all who care about Jayden.Who take time out of your everyday lives to read these blog entries,visit the site,join others to the cause,your thoughtful messages.It shows us as parents that we are on the right path,and there is,I can see it .A light at the end of this tunnel.
Paul,Kimmie,& jayden's World Administrators.