Wolf-Hirschhorn Syndrome: One Year Later

When you wake up on the day that changes your life it does not feel any different than the day before or the day before that. You might have funny feeling in your stomach when you roll out of bed or something might seem “off” yet you can’t put your finger on it…but for the most part, days that change your life start off as any other day. Your alarm goes off, you start your routine and never think twice about how each ticking minute that passes is propelling you towards a whole new path.

On January 3, 2012 I woke up with a strange feeling in the pit of my stomach. And on January 3, 2012 I went to bed with puffy red eyes, a heavy heart, and a future that went from bright and shiny to the blackest black.

The original post explains the events of the day but it barely touches on the feelings. As I researched Wolf-Hirschhorn on January 3rd the WHS.org site was ironically unavailable. Instead of reading all the wonderful stories of strong families and amazing children I clicked on a site which displayed dated pictures of individuals with WHS along with a series of numbers. At the time I had no idea what the majority of the numbers meant (I later learned they were the deletion classifications), however, one set of numbers was very clear to me. They were two dates: the first a birth date followed by a dash and the second date . . .well you can guess what comes after the dash. I quickly scrolled through the pictures faster and faster doing rough mental math to calculate how old each of these individuals were when they past away. I don’t know what I was looking for but I could not look away. I finally closed the computer and could not speak.

As I have said before, life has a way of writing your story in a particular order. With the WHS.org site down I was forced to read old, dated, inaccurate data on other sites. It actually stopped me from doing additional research. Reading the very harsh wording and numbers from the other sites made me close the computer and stop. I am not one to put full trust into the Internet so I was not going to spend my evening learning nothing of value.

However, the next day I slowly opened my computer and typed Wolf Hirschhorn Syndrome into Google one more time and this time WHS.org greeted me with open arms. It was a clean site (I don’t like clutter) with sweet pictures of very happy, adorable children. I started reading what Wolf-Hirschhorn was from a different perspective, a dad. WHS.org was started by a father as a way to bring a very small, elite community together. The words were softer, less harsh, more realistic than the other sites. My own healing started when I “met” Kendall and Kaylee and Tyler and Riley and Dylan and so many more of JD’s future peers. These were families just like us who have a child missing a piece of their 4^th chromosome and yet that child adds wonder to the whole family. The children in the stories were smiling and walking and talking and laughing with their siblings. The children were bright and loving and their eyes were filled with innocence.

Most families had additional blogs outside of the WHS.org stories so I started to read and read and read. I stayed up until 2am night after night after night reading more and more about these families. Through the blogs, Wolf-Hirschhorn started to seem more common and less scary. Sure there were medical complications and children who were very sick but there were also families full of love and happiness.

Let me be clear, at this time I still saw my future as black with no light (the light started to shine through the day JD was born but more on that later). Tears flowed daily and often yet with each day I cried a little less. I was still scared and hurt and questioning how we got on this path. BUT . . . I started to get to know the other families and I liked them. I wanted to meet them and I was kinda excited to join their club.

On January 2, 2012 Wolf-Hirschhorn Syndrome did not exist.

On January, 3, 2012 Wolf-Hirschhorn Syndrome was frightening, unfathomable, incomprehensible and a nightmare.

On April 2, 2012 Wolf-Hirschhorn Syndrome became love and hope.

On January 3, 2013 Wolf-Hirschhorn Syndrome does not define our family. 

Wolf-Hirschhorn is not the focus but rather in the background. 

Wolf-Hirschhorn is not specials needs. 

Wolf-Hirschhorn is a loving family with a handsome little boy whose big brother looks at him on a daily basis and says “I love JD! He’s so cute.”   

 On January 3, 2013 Wolf-Hirschhorn is our blessing.