Going Gorilla~WAGR Wednesday

Photo Courtesy of Photokanok/freedigitalphotos.net

Some of the most amazing people I have ever met are Gorillas...

But what does that mean?

This is a question that comes up usually after a new family has joined our support group and has been interacting with our WAGR support group for a few months.  What is a "Gorilla Mom" or "Gorilla Dad"?

We, the parents of children with WAGR/11p Deletion Syndrome refer to ourselves as Gorilla Moms and Dads.  This stems from the Disney movie Tarzan  (1999) where the gorilla mom, Kala, fights ferociously to protect her infant. Disney was pretty accurate in terms of how far gorilla parents will go to protect their young.

Because they are sociable animals, gorillas try to protect one another from potential danger. Adult gorillas commonly risk their lives to defend their young from poachers and other dangers, and often die in the process.(accessed at http://saveagorilla.org/60-Questions.html 5/7/14).

Because we are protecting our children who are quite unique, and because we often have to educate doctors, teachers, and therapists; and also family and friends...Because we are often the "experts" on our kids; we have to protect them and will often do that at the risk of "losing" some of our own dignity.  

It may be that the school isn't allowing our child in the mainstream classroom as much as they should be.  It may be that the doctor says, "No, we don't DO antibiotics for 14 days...we'll do 7."  It might be that the county has denied our child for services that will help him or her learn to process sensory input better.It might be that the nephrologist has said that the 80th percentile for blood pressure is fine; why increase the medication when the blood pressure is elevated if it's in the 80th percentile?

As a Gorilla Mom, I have wept in front of the Circuit Judge when pleading our case for services.  As a Gorilla mom, I have written letters about getting better standards for the bus that carriers our children with special needs to school.  As a Gorilla Mom I have switched doctors, and I have requested appointment documentation to be re-written so as to reflect the correct information.  As a Gorilla Mom I have tried to explain to people WHY the "R" word is hurtful, 

I can't tell you the number of times that the Gorilla Moms and Dads in our WAGR support groups have solved problems with one another, shared information that has led to tremendously positive outcomes for another child with WAGR, or just shared tears and prayers for one another.  When Evie was diagnosed with Wilms Tumor back in 2005, (Facebook was not around yet)...I sent a message to our WAGR Yahoo Group, here's what it said:

Subject:  The bad call
I just got the call that Evie has Wilms.  I don't know what to do.  I don't want my baby to go through this.

We were admitted to the hospital that night.  A day later, when all the responses I got were printed onto paper, I think I counted the number to be in the 30's.  They were things like, "(Insert Name) had it when he X months old and he's X years cancer free."  Or, "(Insert Name) had X chemo and X chemo for X weeks and is now X years cancer free."  

You see, our Gorilla Moms and Dads, while many are thousands of miles away, and we may never ever meet them face to face on this earth; we have a bond that is indescribable.  Our bond knocks out language differences, rises above political or religious affiliations and tackles any socio-economic separations that might exist in "real life".  That's why I can never wait to get to the next WAGR Weekend; so I can hear their voices, see their faces and hug them in person.  

I'm so blessed to be a Gorilla...

Close Encounters...We are Aliens Here on Earth

Do not oppress an alien; you yourselves know how it feels to be aliens, because you were aliens in Egypt.  Exodus 23:9

Some days I feel like I am living on a totally different planet than many of my other friends.  I'm talking about IEP's, medications, genetic testing results, chromosomal and genetic deletions...am I a scientist or a mother?

When Evie was first born and diagnosed with WAGR Syndrome, I felt like E.T. in a California suburb.  I was just hoping I'd see someone who looked familiar, someone with whom I could communicate.  

My favorite scene from E.T. is where the kids take him trick-or-treating.  E.T. spies another kid dressed up as Yoda and he starts to follow him saying, "Home!  Home!"

Our Annual Photo: My fellow WAGR Mom and Partner in Crime, Julie

After three years of feeling like an alien on foreign land, I met my "alien" family in Manassas, VA for the annual gathering of families of individuals with WAGR Syndrome.

WAGR Weekend...  It rolls off the tongue, and quenches the spirit.  As my husband had said, "We always feel like a minority, but here, in this hotel this weekend, we're the majority."

God never said we would always feel comfortable and welcomed in this world.  Actually, he suggested that if we feel comfortable, we might be on the wrong track.  However, while we may not always feel like we belong, he has not left us alone.  

God has given us families here on earth.  He has given us a chance to support one another, to gather together, to celebrate and belong.  

Our Second time to WAGR Weekend was in 2009

At WAGR Weekend I feel lighter than air.  I don't have to explain my child to anyone.  Literally, there are a handful of parents there who know Evie as well as I do, because they have already raised a child just like her.  Even the siblings feel at home, because they are seeing kids and adults just like their own brothers and sisters.  

If you haven't found a networking group, or a support group that you can join, I encourage you to do so...whatever your unique situation: cutting, depression, chronic pain, addiction, disability...the right support group can work wonders for your spirit.  

Give yourself a chance to fit in.  Give yourself a chance to be at home in this foreign world.