Sunday, September 8, 2013

New Wheels New World

Two weeks ago, Sammie B got new wheels.  We proudly took those wheels out for a family walk that night, and I posted this picture on Facebook, with the comments below (yep, if you are Facebook friends with me, much of this is old news to you . . . but not all of it!).

Sammie's New Wheels. Some thoughts worth sharing . . . 

Everything about this picture makes my heart smile. Everything. Certainly, if you'd told me four years ago that today I'd accept delivery of my girl's first wheelchair, I might have wound up in a heap of tears on the floor. But here's the thing . . . while Sammie has done amazing in her gait trainer/walker and is still making strides toward independent walking, those things aren't practical for long distances for her right now (imagine being four years old and trying to maneuver Disneyland in a walker), and we've pushed and pulled her in strollers and wagons and on tricycles for nearly five years. She's dependent on us for her mobility. Those options, while fine sometimes, are no longer age-appropriate. Her peers see a stroller, and they think "baby" or "toddler," and she is neither of those things.

The first time we put her in a manual chair, she was a natural. Moving the wheels like she'd been doing it her whole life. See, I thought the first time I saw her in a wheelchair, I'd cry. And I did. But they were tears of joy and I truly felt like my heart was going to burst with pride. I know B felt the same. The lump in his throat was obvious.

This chair (and the power one to come in a few months provided the insurance company doesn't make us jump through endless hoops) has so much to offer our girl. An age-appropriate means of mobility. Independence. Amazing.

I look at her, and I see an amazing little girl sitting taller and prouder than I've ever seen before. My girl. One of the most magical little beings that ever lived.

But I also can't help but look and worry that the rest of the world will look and see a chair first, little girl second, and that hurts my heart. Before I posted these pictures, I also wondered if people (our friends and family included) would see the chair and wonder if this meant we were giving up on other forms of mobility, like independent walking. It does not.

It does mean, though, that we accept our girl (what's not to love and accept?! have you met her?!) exactly as she is -- right now -- and we want her to have every single tool she needs to navigate her world in as age-appropriate and independent way as possible.

So look at this picture. Smile. Marvel at how cute my family is.  And promise me that you'll look in a way that you see my family first, the chair second.

I hope that little by little, we (along with our girl and all our amazing little friends on wheels) will change perceptions.

For Sammie B is one amazing little girl. The chair is but a part of her. Maybe a "forever" part. Maybe not. This is her story, and we are just lucky to be part of it. And, I know, with all that I am, that her form of mobility in this life will not determine the richness of it.

Cheer on, Team Sammie B. Cheer on! 

* * * 
As we walked around the block that night, Sammie yelling "where are the neighbors? I wanted to show everyone my new wheelchair?!" and B and I just bursting with pride, I thought back to a day nearly 5 years ago.  Sammie B was just 20 days old, and freshly home from the NICU.  We'd packed up the stroller and headed out for our first walk around the neighborhood (for bagels and coffee) as a family of three.  As we pushed her, B and I laughed at how proud we were.  B said each time we passed someone, he wanted to say, "hey, look at us!  we have a new baby! I'm a dad!!"  There was an undeniable bounce in our steps.  We were beaming.  We fought over who would push the stroller (ultimately, I got to push to the bagel place, he pushed home).   We have both remembered that first walk fondly and laughed about it when we've seen other new parents doing a similar "pride walk" with their fresh little babies.   We were so, so proud. 

And here's the thing . . . this first walk with Sammie and her new wheels?  It felt the same.  My girl was sitting tall and proud, and B and I were thrilled for her and with her.  There was an undeniable bounce in both of our steps, and we were beaming.  And once again, we both wanted to push our girl, and took turns. Even Mia took a turn at pushing. 

We are just as proud of our Sammie B today as we ever were.  She's amazing.  

For those following along on Facebook, you also know that the chair as delivered had some problems and we had to send it back.  Fortunately, they were (we *think*) resolved easily, and we have the chair back and are just waiting on one new part to come in.  I was devastated when we had to send it back.  So angry and sad.  I felt like we'd given our girl this amazing gift of mobility and then taken it away.  I stayed up that night and researched and researched trying to figure out what was going on with the frame and what needed to be done. I wrote a scathing email to the sales rep who ordered the wrong parts and allowed the chair to be delivered when it was so clearly not put together correctly, and begged him to just fix it now.  And alas, we got it back, adjusted, and working, within a week . . . . 

After picking it up, Sammie and I had some time to kill before another appointment and happened to drive by a Kohls.  I asked her if she wanted to go in and buy school clothes, and she was game.  And guess what? My girl was a maniac in there.  I was both exasperated with her and elated.  See, Sammie's never been able to run away from me in a store . . . and here she was, wheeling away, and me chasing.  Wheeling over to stacks of shirts and saying, "I want this one.  It is purple, my favorite color!  Do they have my size?  Look for a 5!"  She picked out a ton of clothes, moved freely in the store, and had me giggling the entire time.   We walked past the men's department where the suits were and she yelled, "They sell prince suits! We should get a new one for Dada!"  As I was paying, she wheeled away and I looked over and she was opening a chocolate bar and said, "Mama!  Look what I found!"   (Later that night when B asked her if she'd had fun shopping, she said, "I was out of my mind in there!" Indeed she was.)  

That shopping trip will easily go down in my favorite memories of all time.  

The first time I chased my Sammie B through a store.  

The first time I said to her, "NO! Sam, put that back and stop wondering off!"

The first outfit she picked out all on her own, when given free reign of the store. 

Girl has style.

* * *

The next day, Sammie's nanny took her (in her new outfit, of course) to the Science Center.  During the day, she sent me a video of Sammie maneuvering herself up to the exhibits to look.  All by herself.  And I sat in my office and watched that video over and over and cried some of the happiest tears of my life.  I called my friend into my office to watch the video with me again.  I said, "do you know how big this is to me?"  And she said, "I do.  Right now, I see a little girl whose body is finally being as independent as her mind and spirit have always been."

And with that, I cried some more.  

* * * 

These new wheels are a beautiful thing.  More beautiful than I ever, ever could have imagined. 

So here I am, sitting in my living room, with the cutest, tiniest purple wheelchair parked next to me.  It has pink and purple princess crowns on the backrest, and it is so, so cute.  So now, looking at my girl's first wheelchair, while she sleeps soundly in another room, all I can think of is how very, very proud I am to be her mama, and how very, very much promise and possibility comes with this little chair.  And how very, very Sammie B it all is. 

So very Sammie B.  

Full of style and possibility.  

Cheer on Team Sammie B, Cheer On!!!

And tomorrow, I send this big girl off to a brand new school, with her brand new wheels.  Be still my heart. 

1 comment:

Jacquelyn said...

Hello! Thanks for your comment on my blog :) it's always fun to "meet" others who are a part of this community! Sammie B is beautiful!! I think it is awesome that she has a chair now- getting me a wheelchair even though I could walk with a walker was one of the best gifts my mother gave me. I'm fighting to show the world that people are not defined by our means of mobility or by our differences, and I can tell Sammie already does that just in daily life! She shines. She will do great things, and her wheelchair will be a blessing :) Your family is lovely. I'm excited to follow along your journey. I'm cheering for her all the way!!