Wednesday, June 4, 2014

Celebrating Our Lives with WAGR Weekend~WAGR Wednesday


 Why is WAGR Weekend so important to me?
  
That seems like an easy question to answer; but that's only if I were to give an easy answer.  I don't have an easy answer, however.  In fact, my answer may seem a bit "controversial." 

First, I should probably explain WHAT exactly WAGR Weekend IS!

Being that WAGR is a rarer than rare disease, we know that the only "easy" way to meet other families with WAGR is to arrange to gather at a given time at a given place.  Hence, WAGR Weekend was created.
Friday night there is a chance for the families to meet up together; not for a formal dinner, but maybe just a meet-and-greet type of event in the lobby of the hotel, or in a small banquet room.  
Typically the "Gorilla Moms" will have their night out on Friday while the "Gorilla Dads" and other members of the families may play together or just hang in their hotel rooms.  
Saturday usually is ushered in by a casual breakfast, or maybe just an arrangement to meet for the continental breakfast that the hotel may be serving. There may be presentations, or round table discussions on Saturday before lunch, and some sort of activity after lunch during which attendees can hang out together and have fun.  Saturday night is "Gorilla Dad's" night out; an opportunity for the dads to bond just as the moms did the night before.  
On Sunday people head back home at all different times.  Some may stay on for a longer vacation, while others have to hurry home to get back to work on Monday morning.  
So, nothing "flashy" really happens.  Not if you're on the outside looking in.  But, after pondering the importance of WAGR Weekend to me; I've realized that something AMAZING happens, if you're ready to let it.

Elisabeth K├╝bler Ross is known as the author of the 5 stages of grief.  For anyone who knows about grief and anyone who knows about having a child diagnosed with a rare disease, GRIEF is, in fact, what many of us experience.  
Denial:  I kept waiting for the doctors to return to our hospital room and say, "Oh my gosh, there ARE irises in her eyes...we just didn't see them at first."  Then after we got the results of the FISH analysis back from Baylor University in Texas which confirmed Evie had WAGR, I thought MAYBE we would get a letter saying, "So sorry, we actually sent that letter to the wrong person."
Yes, we DO experience denial when it comes to having a child diagnosed with WAGR.
Anger:  I was TICKED OFF that I didn't get a "happy homecoming".  I had LOTS of friends who had babies and they all got to come home with their happy, healthy baby and just learn how to be a mom!  I NEVER experienced that.  I knew my daughter would be blind and that she would likely have cancer and suffer a range of developmental delays.  I knew that from the third day of her life.  Where was MY happy homecoming?  I didn't even know if my baby would live.
Yes, we DO experience anger when our children are diagnosed with WAGR.
Bargaining:  I can't remember exactly going through this at the time of Evie's birth- I knew that it "was what it was" and that nothing I said or did would make it go away.  I DO remember, however, when she was diagnosed with Wilms Tumor at 15 months old, I kept praying to God and saying, "If I glorify you through this all, if I look to you and say, 'God is good...' will you please let this go easily for us?  Maybe even make it disappear all together?" 
Yes, we DO bargain and try to do things in hopes that our road will be easier.
Depression:  Oh yeah...you could say that I'm medicated and motivated.  People would say I inspired them, that I was so strong, that I was amazing but I would see a messed up, tired, selfish witch in the mirror.  I had postpartum depression that I didn't recognize until I was through it...I still get nauseous when I hear the sound of the kick and play or baby swing that Evie had as a baby.   Those were long days of "just getting by until bedtime."  I wanted to be asleep, I wanted to be alone, I wanted to run away.  Thankfully, I had great family, great friends, and great doctors to help me through.
Yes, we DO experience depression when our children are diagnosed with WAGR as well as any of the other medical conditions that come up as a result of WAGR. 
Acceptance:  There it is...that moment, or many moments, when I have come to terms with that fact that "This is My Life...This is My Story..." and now I just have to choose how I'm going to live it.  I can spend my day depressed, or I can spend my day inspired.  I can look at this as a burden, or I can look at it as a privilege given to only a few.  WAGR Weekend is part of ACCEPTANCE for me.  
Yes, it can be over-whelming to see the range of abilities in our kids. Yes, I did get a little worried about Evie's future as I heard stories about renal failure, melt-downs, speech delays, and all the "other stuff". But then I realized that it none of it changes the love that we have for our kids. None of the "other stuff" is the end of the world. None of the "other stuff" has prevented our kids from doing awesome things that are quintessentially them!
   
Nick's got the microphone.
Danica's heading for the elevator again.
Kadina's dancing to Miranda Lambert. 
Caroline wanted some quiet time, so she went upstairs to her hotel room.
Hayd's got the camera and he's "cording" Evie bowling.
Evie's squeezing her hands opened and closed, opened and closed, opened and closed...she must be happy.
WAGR Weekend takes me beyond acceptance to a place in my heart of celebration and gratitude. 
I'm so thankful I know these people. I'm so thankful I can laugh with them, cry with them, share with them, and thrive with them.
  
Well, shoot...now I wish it were the end of July so WAGR Weekend would be THIS weekend!  Can't wait to see everyone in Cleveland!

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