Ellie has a rare genetic syndrome called Wolf-Hirschhorn syndrome. This is the result of a genetic error on chromosome 4. It is estimated to occur in 1 in 50,000 births. Ellie also has right eye anophthalmia, which means she was born without her right eye. Ellies life has its ups and downs, but she continually amazes us and makes us smile. This is her story
Being happy doesnt mean that everything is perfect.
It means that you have decided to look beyond the imperfections...
Wednesday, April 14, 2010
Instead - By Huygen Hilling
"Instead of walking with you, I will crawl with you. Instead of talking with you, I will find ways to communicate with you. Instead of focusing on what you cannot do, I will reward you with love for what you can do. Instead of isolating you, I will create adventures for you. Instead of feeling sorry for you, I will respect you."
I came across this on a FB page of another mum who has a child with WHS. This poem really rings true in our life with Ellie. Yes there has been times when we tend to get bogged down with what Ellie cant do.. But we REALLY do celebrate the things she can do, the small acheivments.
As I have also blogged about MANY times, we get looks, comments, stares etc when we are out with Ellie. Yes this bothers us...
Yes this upsets us...
Im scared of how it will be when she is older... and understands more
Do we let this stop us from going out with Ellie, Taking her out for walks, plays, and create her own adventures....?? ABSOLUTLEY NOT. Thats one thing we have never done, we have never hid Ellie or sheilded her from the world. She has as much right to her own adventures as any other child.
Ellie will be what she will be... Its up to us to help her be the BEST that she can be