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.
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That doesn't mean, necessarily, dropping my kid off and leaving for some R&R (of course it doesn't rule that out either)...it means, going with my kid, hanging with another family, and my friend and I building energy off one another.