Wolf Hirschhorn Friends (warning - picture heavy)

I bet you wonder what it is like.  When all these families get together - pulled together by this single syndrome. Here's a peak into our world.

There are about 8 families who are in the area and could come at any time.  Most of those families are "families of 5" believe it or not.  Most of the children are elementary age and younger - and almost all of us - our child with WHS is the youngest.  What this looks like is a lot of 2 (my twins) - 8 year olds trying not to step on WHS beauties ages 1(Alexander) - 6 (still very very small).  The development of children with WHS is delayed (as if you didn't know that) - so the older kids have to be careful of the 9 lb one year old.  It can also be tricky with the equipment people need.  Kangaroo pumps, other pumps, things to help children sit, swings, bumbo, etc.... tend to clutter even the largest rooms!


But there is more.  We are not just a group of 40 people flung together ... dreading our next visit.  We are not unified by this syndrome.  We were introduced to each other because of the syndrome.  We are friends.  In the kitchen, there is a "bro-mance" going on between several of the husbands.  There are pods of children playing in every space of the house.  There are diaper bags flung everywhere - and I swear... every 5 minutes someone is changing diaper.  The bigger boys are playing with dinosaurs and airplanes.  The smaller boys are trying to get into everything the bigger boys are into.  Someone's child is always whining.  The majority of the children are laughing.  And there are moms ... WHS moms with WHS kids.  They are gathered in little groups that grow into large groups and eventually break off into little groups again.  They hug. Chatter. Gossip. Hug. Ask Questions. Answer Questions. Show off tricks. and .... support each other.


This is where the abnormal is normal.  We discuss break though seizures, Keppra, Topomax, Ketogenic Diet,
Diastat,  our last hospital stays, physical therapy, occupational therapy, Kenesio Taping, Standers, Walkers, and Orthopedics like most people discuss food.  What we like, what we don't like.... it is all so normal....


My life is fairly normal. I try.... I really do try to keep it as normal as possible for everyone.  There are people who do it better - people who have a harder time with it... - but the truth of the matter is: our lives are not really normal.  It doesn't matter how many ways you cut it... They aren't. My friends are so supportive.  They listen, they rejoice in Alexander's triumphs... but I know the seizures and stuff scare the crap out of them. 

But this is a different kind of normal.  This is a normal where we all know that  trips to the hospital happen.  And while we all pray when a trip is made.... we don't stop.  We don't talk about each other with pity in our voices.  We feel compassion for each other when necessary - but not pity.  There is a huge difference. 

To just be normal - because we've all had these common experiences. Yesterday, I said my heart was happy and it was.  If only I could bottle all the joy from yesterday .... I could ride that wave forever.


Here are some pictures of our get together. 

Haley and her favorite toy.  She is SO beautiful.

Alexander and Mia

Kaylee.... in the arms of her Momma

She is a total Rock Star

Mia.  Somewhere I think there is a caption on her picture that says Innocence.... Is that not the truth or what?!

Tanner - "Alex... If you want to hang out .. you better eat so you can get as big as me!"

Because I'm THIS BIG!!!

Addison showing Alexander how to play a new toy

Alexander checking out Tanner's cool toys

Princess Izzy

Addison's New BFF

Lauren supervising 2 stinkers (AKA Norrah and Andrew)

Dulcie and Haley.  Meeting them was like hanging out with old friends.

Addison and Ray actually had an argument over weather or not this was a helicopter or an airplane.

I had to trick Addison just to get a shot of her looking at me. But she does love Izzy!

Norrah - I have a similar picture of Andrew doing the same thing. They really are 2 peas in a pod

Jess with some pink :)

My BFF Norrah

This might become my new favorite picture. 

Missing: Chrissy/Mia, Jen/Karly, and Hannah/Riley `

Soul Sisters

Alexander and Kaylee

Haley and Norrah

Norrah and Alexander

It is a wonderful life. I love our family. I love our WHS family. "The Life that's Chosen Me...."