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To Be Seen

May 24, 2015

You will notice me
I’ll be leavin’ my mark, like initials carved in an old oak tree
You wait and see
Maybe I’ll write like Twain wrote
Maybe I’ll paint like Van Gough,
Cure the common cold
I don’t know but I’m ready to start cause I know in my heart

I wanna do something that matters
Say something different
Something that sets the whole world on it’s ear
I wanna do somethin’ better, with the time I’ve been given
And I wanna try to touch a few hearts in this life
And leave nothin’ less than something that says I was here

I will prove you wrong
If you think I’m all talk, your in for a shock
Cause this stream’s too strong, and before too long
Maybe I’ll compose symphonies
Maybe I’ll fight for world peace
Cause I know it’s my destiny to leave more that a trace of myself in this


And I know that I, I will do more than just pass through this life
I’ll leave nothin’ less that somethin’ that says I was here, I was here, I
Was here, I was here

There was a time, not so very long ago, when it felt like our family was invisible, anonymous. And maybe some of it came from not having a solid diagnosis. Maybe some of it came, in a way, from not having a clear path or a diagnostic place to hang our hat.  Nobody really knew Mary at all. She was just this little disabled kid that they might see in passing. But she was invisible. It always seemed like any other kid with any other disease or disability suddenly had this huge support group fundraising for them and cheering them on.  But not us. For some reason, we were alone… invisible.  And I know it wasn’t my imagination. 
There was a small school where Mary went for playgroup of sorts for a few months. Even though all the other kids in the group were deaf, Mary was different. And instead of that being celebrated, it was hidden. Actually, she was hidden. Newsletter after newsletter, class photos, anything that had photography involved. My daughter was very carefully excluded from any of the pictures. Every other kid in the group was celebrated and photographed and held up as an example of what little miracles they were. Every kid except mine. And when they asked us to leave because we didn’t fit their mold, they did that quietly as well. Every other kid who moved on from their school was celebrated in the school newspaper. Even the preschoolers. Every other kid except mine. We were invisible.
When we were going through the living hell of her diagnostic journey, when they told us we would outlive her, and all the things she would never do, the loneliness was unbearable. Nobody knew because nobody asked.  And how on earth do you bring that up in casual conversation? “Bobby aced his math test. Oh by the way they think Mary has this debilitating, progressive terminal illness. Tell me about Betty’s new nail salon again?”  Yeah, that doesn’t really happen. 
She had no village. She had no community. We had no village. We live hundreds of miles away from family. And she was so young, and so invisible… I started to think that no one would even remember her when we did lose her.
But then something happened. She started at a new school. A school for Deaf children that welcomed her. And suddenly, she was a star. She was celebrated, accepted and loved. Heck, her picture was in every school newsletter that first year. They saw her. They included her. She was just as much a part of that class as any other kid. The girls chatted with her, never minding that she wasn’t talking back in the typical way. They included her. Suddenly, she wasn’t quite so invisible. And she was as happy as I had ever seen her.
Then we took her to Disney World for the first time. “Good Morning, Princess.”  “Right this way, Princess.”  “Have a magical day, Princess.”  Suddenly people- the amazing cast members- were going out of their way to see her, to notice her, to make her feel special. She was seen. Even if it was just a theme park protocol… She was not invisible.
August thru November 2012 - incl disney 535
And then last year, when it was her birthday, she had just returned from another trip to Disney World. After a whole week of being doted on by amazing castmembers, her friends were incredible with her. 
Because they know her. 
They whispered and signed excitedly to each other, “Look, the birthday girl is here! Mary is here!”. And somehow knowing that all of them running up to her at once would have been too much for her, one by one they quietly came up to her and wished her a happy birthday. She was so happy. She was seen. She was included. And she was accepted and celebrated in a way that worked for her.
Then, over the winter, the Make a Wish people came to our house to help Mary plan her wish. And it will be perfect for her. 
But then the volunteer said something to me. She explained that now that Mary was a Wish Kid, she would always be a Wish Kid. She would now belong to a very special group of people. She would be invited to special events with other Wish Kids. She would be part of their club. She would be included. She would be celebrated. She would be noticed. She would be part of something. 
And then she got this bike from this other amazing charity. And it was amazing. The bike was incredible. What an amazing gift to give to a child who simply could not ride a regular bike. It meant a summer full of outdoor fun with so much more independence than she had before. 
But there was something else. Something in the message of why this charity took on this incredible task of getting every kid who needed a bike, a custom made adaptive bike. It turns out, it was never about the bike itself. They wanted these kid to be seen. To be included.  Because they knew just how important that was.
And so, they invited Mary to lead off a fundraising walk. It as a very special walk, in that they were fundraising for many different organizations in the city. But they wanted the kids who received these bikes to be the ones to lead off from the start line. Why? It was simple. As the CEO (they referred to him as the Chief Enthusiasm Officer) shouted over the crowd: “They’re going to see our kids!” And that was it. They were going to see our kids. The invisible ones. the ones who had been pushed out of the photographs for years. The ones who had been left behind at the playgrounds when they just couldn’t keep up. They were going to see our kids. And they were going to see that, given the opportunity, they could fly. And they did. 
As the other kids on their bikes took off from the start line, I felt a sudden twinge of panic. We couldn’t keep up. We couldn’t even keep up with the kids who were just like us. My heart soared for them as they raced ahead, and it sank for my girl- I didn’t want to push her bike too fast and hurt her legs.  That feeling only lasted about 2 seconds. Because just as the familiar cloak of invisibility started to make its way towards us, some of the volunteers from that charity came up from behind us, cheering Mary on by name. Telling her what a great job she was doing, and pointing out all the other folks from the same charity, that had not left us in the dust, but were walking right alongside her. And around every corner, these volunteers were cheering her on, by name. They had met her twice. That’s all. But they all knew her. They all celebrated her. And when she did cross that finish line, there was a big group of them, celebrating with her. I’m sure it seemed like no big thing to them at the time. Just part of the fun of the job, maybe. But it was everything to us. She had been seen. She had been included. She had been celebrated by a whole new group of people. For a kid like Mary, that kind of community is everything.
variety family variety start close variety start2 variety walk
Friday at her school was May Day. Kind of a homecoming celebration, but in the spring. All the parents and alumnae come back to the school. They crown one of the senior girls May Queen. There are drama performances. It’s a big deal. It’s the kind of day where a school wants to show off the best of their best. 
It’s the kind of day where I hold my breath almost instinctively, expecting Mary to be excluded somehow. I should know better by now. 
She and her classmates were the Queen’s Attendants. The girls wore white gowns, the boys wore little suits. They practiced and practiced walking down the aisle in the auditorium. They were ready. 
What they couldn’t practice for were all the extra people. It didn’t take long for her to become overwhelmed. And suddenly she was in meltdown. On her big day.  Pretty white dress and all. 
But then, something else happened. The people around her knew her and they listened to her. They knew what she needed. They knew she wanted to do her performance, but that there were just too many people. So her teacher cleared the parents out of the room to give her some space. And when it looked like she couldn’t hold it together to walk down the aisle,  they gave her her wheelchair- a familiar place for he to feel safe and supported. And her teacher and her aide dutifully squeezed her hands and feet, giving her all the calming deep pressure she needed. They quickly adapted their plan to help her feel safe. 
And do you know what happened? When the music started, she stopped crying. She pulled it together. And she smiled. And she wheeled down the aisle hand in hand with another little boy in her class. And she got up on that stage and she looked so proud of herself. Was it what we had planned? no. We had planned on her walking. But was it perfect? Yes. The celebratory Deaf claps in the audience confirmed that almost as well as the smile on my girl’s face. She had been included- even when it was hard. She had been seen and listened to by her team. When she made it up onto that stage, she was celebrated along with all the other students. And her mama may have cried just a little – something her teacher and aide also admitted to. Because there she was, up on that stage, no matter how she got there. She was just up there with her friends, just like everybody else. And it was everything. 
5 Comments leave one →
  1. May 24, 2015 6:43 pm

    It’s wonderful to see how much better her life has become because of the Make A Wish Foundation and other charities that really do care. That sure is a cool bike!

    • May 25, 2015 2:16 am

      It is amazing. It’s as though she found her people, and they are all amazing. We are so very blessed! 🙂

  2. May 25, 2015 11:44 am

    Absolutely beautiful. Thank you for sharing.

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