Sunday, July 12, 2015

Point and Stare. But Don't Stop There!

It happens almost every time we go to the grocery store.  Or the toy store.  Or the school.  Or a sports event.  Or really anytime we leave our house.  At first I didn't know how to react.  Being a mom to a little girl with special needs does not automatically arm me with some power to deflect stares and pointing.  I didn't ask to be the center of attention and neither did she, but the most awkward situations usually leave the most room for growth. 

At four, she doesn't walk or crawl (yet).  When she's really concentrating, sometimes she drools.  She has a vision impairment, and she tunes in so well with her "bionic ears," as we call them, that sometimes she forgets to use her eyes to see.  With all her challenges, she has curls that often get comments, and a genuine smile and giggle that will melt a person.  She understands almost everything around her and even picks up on us spelling out, "I-C-E-C-R-E-A-M" when we suggest it to her siblings, thinking we can hide messier things like that from her.  She speaks dozens of words and puts together short phrases, but is still not understood by everyone.  She is preserved in a state of innocence and only cries over getting her hair combed and having to end bath time - familiarly typical of a 4 year old. 

From the time she was little, we got comments of "Aww, she's so sleepy on your shoulder!" when really she couldn't hold her head up yet.  I thought as she got older, it would get better - at least people would realize she had a disability and not mistake it for being tired. 


I remember the first time I found a different end to the stares.  We were standing in line at the grocery store and an innocent little girl stood staring from the next checkout stand over.  I could sense her little eyes and I had the deep feeling for her to know my little girl as I did - not as someone different than her, but as someone with so many things in common.  With the little girl's eyes glued to me, I reached forward and kissed the top of my daughter's head as she worked hard to balance herself in the cart.  I continued to talk to her as we stood in line, gave her hugs, and sang songs.  By the time we were both checking out, that little girl was staring even more intently at us as her mom led her away out of the store - not because she noticed my daughter was different, but she was smiling and wanted to be a part of our fun games while we waited in line. 

I snapped this picture, proud that Bryer could get her tight right hand out enough for her attempt to hold on, even though it wasn't very functional if she started falling over.  I later noticed the lady behind her watching, maybe wondering why it was a big deal that my daughter was riding in a shopping cart. 

It was that experience that shed the first bit of light and a way to shape how people view those with disabilities.  Gaining confidence, I used this little game several times in circumstances that the staring could have been uncomfortable.  Maybe I was ready for the next step. 

Again in line at the grocery store several months later, I heard a little girl ask her mom something about my daughter.  I looked over in time to see the mom grab her little girl's pointing finger and say, "It's not nice to point.  Don't stare at her."  My heart sank again. 

I have always been touched by the innocence of children.  It was okay for her daughter to be curious. 

Going against everything that seemed logical and socially acceptable, I wheeled my daughter over to the little girl and her mom and said, "This is Bryer.  I noticed you were looking at her.  She is 4.  How old are you?"  The little girl perked right up, "I gonna have a birfday and then I be 4 too!"  Ding! Ding! Ding!  We found something in common!  I told her that Bryer loves to sing songs and listen to music on my phone.  "I play my mom's phone!" she giggled, as she held up her little fist with a tight grip on her mom's phone.  Bonus!  More things in common!  At the sound of the little girl's voice, Bryer smiled her big, whole-face smile.  I explained that Bryer's body doesn't work like ours, so she is still learning to do things that we do.  I told her that she understands almost everything we tell her and she answers questions to tell us what she needs.  With a little explanation, I could see the mother's face soften and I knew I was on safe ground with her too.  For some reason it was easier to talk to the curious little girl than the grown mom.   

After a couple questions from the mom and quick answers about what cerebral palsy is, we walked away and found ourselves at the back of the line.  I hope that little girl will stare next time - and then I hope her mom helps her follow it up with a hello.  I hope she will step outside her comfort zone and make friends with someone in her school down the road that has special needs.  I hope her mom won't feel ashamed that she caught her daughter pointing, but instead, honors that curiosity and sees it as an opportunity to get to know someone that may look or act differently than she does.  Everyone deserves kindness.  Everyone deserves a friend, even if it starts by staring and just being curious. 

As a special needs mom, I love it when people ask about my daughter!  I am not offended in the slightest and welcome an opportunity, as most moms do, to talk about my pride and joy!  It's more awkward to avoid the obvious and wonder what someone thinks.  Before I was a special needs mom, I always wondered what the 'right way' to ask about someone was.  Now I know a friendly hello or a sincere compliment is all it takes and conversation will follow.  I've had other special needs parents ask, "What is her diagnoses?" which is a tactful way to want to know more. 

Bryer mastered sitting while holding on to the cart just before her long legs grew out of it. These days she rides in the cart for most shopping trips - and is a good sport to organize things that I pile on top of her legs.  It's easier than maneuvering her wheelchair while pulling a full cart behind me. 

Sunday, July 5, 2015

Welcome to Holland

Welcome to Holland, by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.


I have had the incredible experience to meet two people that helped me appreciate my experience in "Holland."  We attended a beautiful wedding.  Every decoration, every piece of lace, every letter on every name tag was dripping with thoughtfulness.  It wasn't overdone or flashy, but was in perfect harmony with the bride and groom's fun personalities. 

It was a little like Italy from the poem.  Perfectly planned. 

I sat holding Bryer who was hot, sweaty, and awkward in her post-op brace, her damp hair sticking to my face.  I did my best to fan her to keep her cool, but let's just say (with the best sense of humor)
It Just Was Not Italy. 

At the reception I had someone introduce herself and want to meet Bryer in person.  It was like she had read brochures about Holland and wanted a taste of it herself.  She was so sincere and warm, although she pointed out that she felt strange following The Briar Effect and trying to find a way to introduce herself. 

Bryer was sweaty and not too social in her thick hip brace, but I was reminded again that Holland is where I belong.  It makes my day for someone to want to meet Bryer and see her the way we see her. 

Later on in the evening, I met another mom - one that had also taken "a trip to Holland!"  Our brief conversation was just what I needed.  There's a bond between people that have 'lived' in the same place.  At first she just pointed out how beautiful Bryer was and asked about her diagnoses, but once she revealed that she had been on her own 'trip to Holland,' well I wanted to hug this near-stranger right then and there!

I am blessed to have 4 older kids and got to experience 'Italy' with all of them.  While that was where I was supposed to be at that time in my life, there's not a doubt in my mind that we were asked to take this family trip to 'Holland' for a reason.  Sometimes it's hot, and sticky, and stressful.  But often times I hear her giggle or watch her master a new skill, and I feel bad for families that don't have this opportunity like we do of having an angel living right in our midst.  'Holland' is a lot of hard work for sure, but all great things are worth working for. 

Once in a while Jason and I get to escape.  We go on a date in the evening, or a yearly work trip to a far away place.  We are pampered and waited on.  People make our beds, serve us food, clean up our mess, and we pretend we're in 'Italy' - but the whole time our hearts long for 'Holland.'  While it's not where we expected our flight plans to take us, it's just not a place I would give up for anything.