Here is the story of another adorable boy that we met on our support group. He's so adorable...here is Zachary's Story.
"Zachery AKA Wishbone is 4 1/2.
January 4th 2008, will be a day that I remember always. That day started with the big decision of do we or don't we find out the sex of our 2nd child. That afternoon started our Spina Bifida roller coaster ride and changed my perspective in life. It was a Friday afternoon and we were given very little information, but one of the last things I recall the doctor saying was "you may be forced to terminate".
Luckily as you can see that did not happen. I felt the gamut of emotions in that first week: FEAR,DISBELIEF, HATE, SADNESS, GUILT, SCARED, ASHAMED, MAD, JEALOUS, LONELINESS and so much more. I pretty much shut down and did not want to talk to anyone other than my husband. Communication with the family, was all done by e-mail.
Oh how has that changed! I am willing to talk to almost anyone now who is interested in listening. I remember being told by other families that pregnancy and the unknown were the worst and not believing it, but they were so right. The moments of HAPPINESS, LOVE, JOY, and PRIDE far outweigh those previous listed, even though they all still make themselves know at times.
I can't even describe in words the LOVE that I have for my son. He has taught myself, family, friends and so many others what it means to be happy, what it means to have determination, how to challenge one's strength and to celebrate life's accomplishments. The things I love about him include his laugh, smile, hugs, kiss, his independence, and his love for the outdoors and his older sister. She happens to one of his biggest supports, so I can see where that love comes from.
When I first learned the diagnosis SPINA BIFIDA = FEAR, now I see it as on going Roller Coaster with it's occasional deep dips and highest peaks of celebration and an increased frequency of a steady ride. I thank Spina Bifida for giving me greater compassion, more patience, a great network of amazing people of I would have never had contact with... from Doctors, nurses, Therapists, online connections and other families through groups such as the local SB association and the Starlight Foundation.
My advice to another parent would be not to limit your expectation of your child, always challenge them to push to the next level. They will continue to surprise you with what they can accomplish. Support for your family, can come for the most unexpected places, we have found a great deal of support and encouragement from the employees at our local COSTCO store, don't be afraid to embrace that community support, it does wonders for the child's self esteem. Something that I am not good at doing myself... when you are feeling overwhelmed accept those offers of help from family and friends and don't be afraid to ask for help if you need it.
Reach for the sky and follow your dreams"