I wish that the title WHS would release me from all of these sad feelings. I want to live life happily without this title hanging over. When he was first diagnosed I remember feeling like I was dying inside. My heart was so broken I didn't know if I would ever recover. I couldn't look at Dylan without thinking about WHS. I know now that I will always be aware of its presence in our life and that's o.k. because there is no changing it. WHS has brought a new meaning to my life - it has awakened me to a life that I never imagined I would have to live. This has been a good thing.
I don't want our family to be looked at as being "different," so that is why I can usually brush off comments, questions or looks and pretend that it doesn't bother me. I wish that I could just say, "yeah he has WHS, so what" and move on. I think that I am finally getting to that place but, it's taken me a long time.
Dylan is now 16 months old and he is my little ray of sunshine. When he smiles and his beautiful blue eyes shine he can light up a room. When he squeals with delight and kicks his legs and flings his arms so hard that his whole body jumps it makes my heart go pitty pat. When he is working on a new skill or trying to regain an old one that was lost I can see the determination in his eyes. When his sister hugs him so tight and kisses him so hard that I am afraid he is going to cry or choke, but instead he just gives her a big smile and it makes me smile too. He has endured more in his 16 months than most people will have to in a life time but I always find him in his crib smiling and happy in the morning. He is so amazing. He has made my life so amazing.
Having my babes has been the most wonderful thing to ever happen to me. I am completely grateful for my fantastic life. Sure there can be a lot of rough spots but the beauty of life always seems to overshadow. I will try to remind myself of this the next time I have these sad feelings (who knows this could happen tomorrow) and remember the ultimate beauty that my babes bring to my life.