Sometimes it's Not the Lions; It's the Flies~WAGR Wednesday

When you first learn that your child has WAGR Syndrome, there are a few things that stand out and cause fear deep within your core:

Your child's heightened risk of developing cancer (Wilms Tumor)
Your child's heightened risk of being blind
Your child's heightened risk of experiencing kidney failure (Focal Segmental Glomerulsclerosis)

But, sometimes, it's not necessarily these "big things" which cause the most heart-ache.  Sometimes it's the "little things" that can eat at you day after day. 

What makes me think of this is an article in the New Yorker from April of 2014 which reveals that a recent study found the most likely reason that zebras have stripes is to prevent biting disease-carrying flies from landing on them.

Flies?

Really?

What about lions?  

         Wildebeests?  

                   Cheetahs?

Zebras, having each of them a unique pattern, size, distribution, and boldness of stripes, appear to have more stripes and a bolder pattern in the areas of the world where they would run the risk of being bit by flies.  According to biologist Tim Caro, "We found again and again that many stripes or intense striping is associated with areas that tend to have many biting flies over the course of the year."  (New Yorker, 4/2014)

This started to make sense to me as I thought about the "little things" that tend to take up a lot of time and create a lot of heart-ache as a parent of a child with WAGR.

Developemental Delays:  As our babies grow, become toddlers, become school aged; we start asking, "When should they be walking?  When should they be talking?  When should they be potty-trained?"  We have NO CLUE what developmental milestones our child will meet, or IF she will meet them at all.  I recall getting mailings every few weeks from the hospital where Evie was born in Madison.  They would say, "Your baby should be...." and it would list all the things she should be doing at that age.  What a horrible mailing to receive while I watched my child fall further and further behind her peers.  I began to just dump those mailings in the trash upon their arrival. 

Ouch...fly bite.

Sensory Processing Disorder:  Head-banging, biting, hair pulling, hitting, screaming...Evie did all of these as she transitioned to her toddler years.  Where had she learned this from?  We felt helpless, and, at times, frightened by how we would live day to day with these kind of behavior issues.  I never wanted to go out, I never wanted to take her anywhere that would "throw her off."  Once I read "The Out of Sync Child," and started to realize that Evie's issues were sensory in nature, and not just a complete hatred of me, her mother; I started to look for ways to LIVE with SPD.  We got Evie into out-patient occupational therapy at a hospital in Madison and life became so much more enjoyable.  But, up until that point, I felt like I lived in a tremendously deep hole out of which I could not climb.

Ouch...fly bite.

Loss of Friends:  As much as people want to be "open to it" and want to say, "your child is no different," we have seen friendships fade after having Evie.  You start to realize that your "group of friends" got together without inviting you.  The reason?  "We know it's hard for you to get out."  "We understand that it's hard having a child with disabilities."  "We didn't want to pressure you."  No.  That's a nice reason which helps these people sleep at night.  It's actually that they don't know how to relate to us anymore.  They don't understand WAGR, or disabilities, or blindness, so they don't want to have us ALL get together, and have no idea how to answer their OWN kids' questions; so, to avoid the uncomfortable situation, they no longer invite you.   You really DO learn who your real friends are when you have a baby born with special needs.

Ouch...fly bite.

As was pointed out in the New Yorker article, "while a single bite from blood-eating flies extracts just a tiny droplet of blood, thousands of bites per day can add up to significant blood loss."

I can't reiterate that enough.  Our daily "fly bites" are Significant.

It's hard to sleep at night when you're wondering if your child is crying because she's in pain from a stomach flu, teething, cancer or pancreatitis.  It's hard to wake up and do your hair and put on make-up when you wonder if you'll just end up crying it all off because your daughter bit you and had a meltdown.  It's hard to pick up the phone and call your sister because, when your child hears your voice in "talking on the phone" tone, she comes into the room and immediately demands your attention by yelling and whining, and then proceeds to throw herself against the wall, bang her head on the floor, and bite her hands.  

It's just plain old hard.

So, while cancer seems to always get everyone's attention with WAGR, when our kids are diagnosed with Wilms Tumor and our world suddenly becomes filled with people who want to help, want to bring food, want to send you a gift card, want to watch your kid so you can do some laundry (don't get me wrong, we DO appreciate these things)...we could really use those people to surround us on a daily basis in between the meltdowns and specialists; to celebrate the first step at age 3 or the first time they used the potty at age 5.  We could really use the friends calling us to say, "I know you're busy, but I was hoping we could all take the kids to the park and have a picnic."  We could really use people who want to learn more, want to help support us, want to come with us to a WAGR Weekend so they can meet other families with WAGR, or want to read our newsletters so they can get a  better glimpse into our WAGR World.

The best fly repellent for us; the rarely understood, is love, compassion, and inclusion.

WAGR Wednesday~50 First Dates Revisited

I wrote this piece back in 2009 just after Evie returned to school from winter break.  I’d like to share it on this WAGR Wednesday because I think it is so relevant to some of the daily struggles that we as WAGR parents face. 

As I announced yesterday on Facebook, our family will be going through a big move soon, and that could create enormous amounts of anxiety for any one of us, but especially Evie.  I will use this story as a reminder that I just need to continue to help Evie integrate the present with the future so she can understand how and why her life is changing.  We will get through our big move one day at a time; even if it takes 50 first dates…

One day, several years ago, my friend and I were discussing the things we have to do in order to try to "work with" autism or sensory integration problems, or even Obsessive Compulsive Disorder (OCD). For example, the joy of Christmas trees for us is like a thorn in the side of our kids who need routine and structure. A snow day or Christmas vacation, while a thrill, throws our kids into panic because it's not how they "normally" schedule their day.

I looked at the Velcro-schedule board that I constructed for Evie in order to help her get through each day of Christmas vacation.   The pictures showed her when she would eat, take medicine, brush teeth, brush hair, get dressed, read books, go to Grandma's, play, put toys away, eat lunch, ... bathtime, take medicine, read books, prayers, sing, bedtime.   Whenever she would start to panic, I'd say "let's look at our picture-schedule." We'd pull off the pictures of things we had done so she could see what was coming next.

After a moment of reflection, I realized, this reminded me of the movie 50 First Dates.   

Adam Sandler's character meets Drew Barrymore’s character.   Sandler learns that Barrymore was in an accident which caused a head injury and resulted in Barrymore’s inability to retain memories post-accident. Every morning when she wakes up Barrymore thinks it is the beginning of the day she has her accident.

Barrymore’s family has reacted to this by adjusting their lives to live that same day with her over and over again, because whenever Barrymore would learn of her condition she would have an extremely scary sort of breakdown. 

Rather than see her in such mental anguish, her family goes to extreme lengths to “live” Barrymore’s day over and over again.   

They print up newspapers to make it seem like it was that day. They give her the same task of painting the garage wall over and over again; while at night they paint the wall white after she had gone to bed so as not to destroy the mirage that they create.  She and her family even sit down each night to watch the same football game as was on the night of Barrymore’s accident.

They let the injury run their lives. They put their dreams on hold. Their "future" would be living that same day over and over again.

However, Sandler’s character comes in and says, "I love her! There has to be a way that we can make this work." He has to find a way to help her learn to "LIVE" with her limitations. But, wait, she couldn’t remember beyond that day! She would wake up every day seeing him as a STRANGER not the man she loved! How could this ever work?

Because I don't want to be a SPOILER, I won't tell you what his solution is.   But, I'll strongly encourage you to seek out this movie to see how love can create incredible ideas that lead to incredible solutions.

It's our love for our special kids that keeps us going even on those tough OCD, autism, sensory integration problem days.

We are choosing to live our lives in order for our kids to be able to live theirs. 

We're not going to close ourselves in our homes in order to avoid the panic of the mall, or never take them to a theme park or Chuck E Cheese because they might get over-stimulated. 

We painstakingly prepare them for these events days in advance with social stories, and pictures, and discussions of "See Evie at Disneyworld." "See Evie on the airplane".

There are days when we don't want to fight the fight. There are days we want to give up and say, "I can't do this. It’s too tiring to day in and day out try to teach my child to LIVE, to SURVIVE, to THRIVE despite her limitations." However, the obstacles our kids face in just making it through a day are incredible, their bravery is astounding, and we love them and we want them to succeed. Sometimes it takes medication, sometimes it takes a ridiculously detailed schedule of pictures, sometimes it takes challenging the OCD by saying, "I’m sorry, but the light stays on, this is how we live!"

The reward in the end is seeing our lovely kids succeed...seeing them with Chuck E Cheese, seeing them smiling in the dental chair, seeing them use a spoon or fork rather than their fingers. 

Isn't love amazing? 

Sometimes it takes 50 first tries to eventually make it work, but those 50 first tries lead to the greatest reward of all--LIVING.