Wednesday, May 14, 2014

When Life Doesn't Stop for WAGR - WAGR Wendnesday

I just lived through one of my biggest fears; having a cycle of migraines while also being a full-time Mommy.

Having a child with high anxiety (a fabulous WAGR trait), I knew that my being "down and out" with a migraine head ache would not be easy.  I was right!  *shocking!*. 

In the past month and a half we have:  bought a house, sold a house, moved part of our family to Reno while part of the family stays behind to wrap things up, seen oncology, endocrinology, ophthalmology, nephrology, and cardiology, had Evie's ASD repaired, packed boxes, had Evie's IEP, therapeutic horseback riding...I'm getting anxious just READING all of this!

The MOST difficult part of WAGR is that the world doesn't stop spinning when your child has WAGR ( I actually think it spins faster, and that's why there aren't enough hours in the day!)

So , how do we handle it?  People say, "how can I help?"  Well, I don't know...how can you?

This past month and a half we got creative...and I kind of "enjoyed" thinking outside the box.  For example, Evie is motivated by BOOKS...some people reward with food (don't do that with a kid with WAGR!), some are motivated by TV time or iPad time...well, for Evie, it's books.  But reading 7 stories at bedtime when I was in the middle of a migraine just didn't work.  Instead, we typed out a few of Evie's favorite books (God bless Peppa Pig) and e-mailed them to Jeff so he could access them and read to Evie over Facetime!  

I also had to say "no" to some things and realize that getting healthy was more important than being a volunteer outside of my home.  I cut out blogging for the most part, had to say "no" to some requests to take someone into Madison who I sometimes took grocery shopping, and I stopped packing for our move all together.  I even scaled back my exercising!!  I had to really prioritize what was necessary to get through this medical setback for me.

Did I get Evie's follow up appointments scheduled yet in Reno?  No...that is apparently something that I'm meant to do later.  Did I pack a bazillion boxes as I had been ?  No...instead I realized that I needed to rest and conserve my energy for the time I needed to be with Evie.  So, I put in my notice to leave work permanently this Friday so I could give myself "room to breathe".  

So, sometimes, when the world feels like a heavy burden, we as parents need to say, "I can't do this; I must take care of that."  We need to be okay with not being "superwoman" or "superman" for a while, because that's not what all of this is about.  

Have you ever heard the story about how geese fly, and what happens when one is hurt or tired?  You can read it here:  The Goose Story .  The leadership team for the International WAGR Syndrome Association knows this story well.  We are all busy people who have all the other stuff going on in our lives besides "just WAGR".  We understand that and we "honk" to one another when we need help. 

It's hard, but I've learned to "honk" for help in my own personal life too.  Do you need some help to stay aloft with the rest of the geese in your life?  Do you feel like you need some time to drop to the back of the V-formation and ride on the "lifting power" of those in the front?  Then HONK!  The first time you "honk,"  you might feel awkward about taking the break; but you'll start to recognize those "honkable" times, and you'll start to see and identify the co-pilots in your life a lot easier.  The others around you will learn more about you, and you'll learn more about them as you start to take turns helping to lead the gaggle of geese. 

No, life doesn't stop for WAGR; but hopefully we will find the support we need which will help us coast through some of our roughest days.

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