A Day with Friends

Who understands your life more than someone else who "walks everyday in your shoes"? When Haley was diagnosed with Wolf-Hirschhorn Syndrome nearly 4 years ago, it was nearly a year and a half until we knew of another family in close proximity of us. Now, several years later, we have met 6 other families in the PA area. We are in contact with a few other families through blogs and emails, though who we have yet to meet but hope to one of these days.

Yesterday, Tanner's family hosted a WHS get-together and it was a good day for all. There was lots of food and good times. The siblings spent most of their time in the basement playing with toys, video games and just enjoying themselves. (I know Nathaniel slept well on the way home!)The parents and WHS kiddos stayed upstairs chatting, sharing their joys, struggles and diagnosis stories.

That day (the diagnosis day that is) changes your life forever but it is not nearly as hopeless and dismal as the geneticists lead you to believe. It is harder and more stressful and you will cry more than you ever have before... But there are happy days again and smiles and giggles from our little ones. They do meet milestones, although at a much slower rate than our other children, and these are joyous occasions (maybe even more joyous as we do not take them for granted because we were told not to expect them for our special children).

Meeting other families and getting together is so helpful. They truly understand your feelings, fears, stress, joys and treatment from the medical world and the odd looks and questions you get from people in the public. How old is she? Was she a preemie? Will she grow more? What is the life expectancy? Is there a cure? Will she ever be normal? I know we didn't take Haley out much the first couple of years much except to doctor appointments and to visit with our families. It took a while to toughen up and get a thick layer of skin so to speak. Now we go wherever we want and hold our heads up high.

In a room full of other WHS families, you feel "normal". You are the majority, not the minority. Your WH children are held, talked to, understood and loved.

Here's a picture of all the kiddos:


I knew Haley was small but this picture proves it. One of the oldest and one of the smallest...


This is a picture of Tanner, Haley and Izzy (Norrah's older sister).
Izzy is almost, if not already, 3 and Haley just turned 4 last week.

Thank you Jess and Justin for all of the food and place to meet and to all of the families for the sharing and good times. It is because of you that the journey gets a bit easier...