Tuesday, April 15, 2014

Thank you, Therapists.

Dear Readers,

Not only is April the month of our birthday, it is also Occupational Therapy month! Of course I couldn’t let this event go unnoticed.

As the triplet sister to brothers with Cerebral Palsy, therapists have always been a part of my life. I have some amazing memories of therapists who made a big impact on little Claire as I struggled to understand my brothers’ disability and why I did not have it. My mom has amazing memories of occupational therapists showing her that the term Cerebral Palsy does not define her sons, and holding her hand through the months and years following their diagnosis.

Our first experience with therapy--a study on PT and premature infants!

This month gives me an opportunity to thank those women (both Occupational and Physical therapists) who have not just helped my brothers reach milestones, but have helped our family walk this unique journey.

Our first experience with Occupational Therapy was when we were two years old. When my mom talks about that OT, Susan, she says she helped Mom make it through those first couple of years. The below pictures were taken from my Mom’s scrapbook. 
"Mrs.Susan was Mommy's dearest friend in Chicago--even though we only
saw her at Occupational Therapy! She always talked Mommy through every stage
and she helped us make huge progress!" 

A good Occupational Therapist is one who:
       1.)  Encourages the little sibling to participate, as well. (even allows her to steal beads and stow them away in her diaper occasionally…or every week.)

      2.)  Values the Mom’s input and reassures her that she is the one who knows her children the best. For a first-time mom living in a world of specialists, Mom needed that assurance that she was the most important figure in her children’s’ world. And the most informed.
Baby Benjamin working hard in OT

      We moved away, leaving Mom’s dear friend and the boys’ therapist behind. Little Claire was not impressed with the new therapists. They didn’t allow me to join in on Benjamin and Mason’s special “play” time. How was I to understand that they were working? I only knew that they got special time with fun, new toys and grown ups, and was heartbroken when I was repeatedly told “no”.
At our "goodbye" party with their first OT. Notice there are THREE
napkins? Little Claire got a cupcake, too :) 

 To any therapists out there: remember you aren’t just working with your patient; you are working within a family unit. As therapists, you have a platform to set the tone for how the sibling views this disability. Will they resent the special treatment their sib gets, or cherish time spent helping their sib achieve goals? That’s something to keep in mind the next time a whiny typical sibling sits in the hallway during your therapy session.

Eventually I grew to understand what Benjamin and Mason were doing in therapy and realized why I couldn’t take part in it. We moved yet again, and this time the move came with a new type of therapy entirely.

Hippotherapy.  I had fallen in love with horses when we did a hippotherapy summer program. The summer program was amazing, and I was a full participant. When Benjamin and Mason began doing hippotherapy every week, my mom arranged for me to ride one of the boys’ horses for a few minutes after their session was over. I was in heaven.

Tears well up as I write, this memory is still so close to my heart. Right around Christmas, the program director told me he had a special surprise for me. He was going to let me ride my very own horse for a whole therapy session.

Wow. Talk about including the sibling. He saw what joy riding the horses gave me, and despite the fact that I didn’t have special needs and wasn’t there for hippotherapy, blessed me with the gift of getting to ride one of his horses. That was a moment I will always remember, and always be thankful for.

    3.) A good therapist sees the potential in everyone, and helps them make their dreams come true.

This story leads me to present day. These years around therapists left a big impact on me. I have seen the life changing work therapists do for their patients and families, and because of that aspire to be an Occupational Therapist myself. I can only pray I will be able to leave a lasting impact on these precious kids and their families like these therapists have made on us.

Probably the most important attribute of a good therapist:
      4.) They don’t care that we are sometimes in sweats (and occasionally PJs) when they come to our house. Hehe

Not too long ago, Mason’s physical therapist was at our house. I had been feeling discouraged, and Mason voiced my concerns to his therapist. She looked at me and said,

“Claire, Occupational Therapy changes lives. You are going to change lives.”

Another moment I’ll never forget. Another therapist making a life changing impact on me.

What makes therapists special? The opportunity they have to make a difference every single moment of every single day. It might be a hug to a frightened mother, the offer to the sister to join in, the encouragement that you are able, whatever your abilities.

To all of you therapists out there, thank you. You really are changing the world—one life at a time. 

Sunday, April 13, 2014

Birthday Week Featured Child: Mirabel

Dearest Readers,

It is now, officially, our birthday week. Woohoo!

 Our birthday is Friday, I have my theater class's show Saturday, and then it's Easter! I will be blogging about the festivities once they are all said and done. But today it is time for you all to meet....

Mirabel means "wondrous", or of wondrous beauty. Definitely
an appropriate name for this beautiful girl!

About this time last year I wrote this post about an orphan in Eastern Europe who, like me, was about to turn 16.

I knew I wanted to feature another waiting child this week, but who? An April baby? Another 16 year old? Instead, I picked a four year old born in August.

That smile. So precious!
Mirabel is four years old. In her country, this means she will be transferred to a mental institution soon. Soon she will be taken away from the only home she has ever known. She's only four years old. Most four year olds in America don't cross the street without a parent's hand.

 Adoptive families are called forever families for a reason. Mirabel's whole life has been unstable. Nothing has been constant. When she is home with her family, though, the same person will wake her up every morning. She won't cry alone after surgeries. 

A family that met her last year said the following: 
” We saw Mirabel this morning.  She is in the laying down room.  The nannies were carrying them outside.  She can’t hold her head up, support herself, sit, or stand.   It looks like she has no control over her legs at all…flopped to the side when the nannies carried her. She does, however, have good use of her arms.  She kept reaching up to try to touch me.  I gave her a set of the rings to play with.   She was SO happy to have something to play with. She kept smiling at me. I really think that there is a smart, aware little girl in that broken body.”

Will you please pray for Mirabel this week? Pray that she will get to celebrate her birthday with her family one day. 

If you would like more information on adopting Mirabel, please go to her profile at http://reecesrainbow.org/?s=mirabel. 

Your Blogger,

Saturday, April 5, 2014

A grace-filled wink

Dear Readers,

I believe airplanes are one of the greatest places for getting to know people. My philosophy is that if you have to sit next to them for hours on end, you might as well love them and show them you care about their lives. (my uncle would say that's called being nosy, but whatever.) Sometimes you can do this without words even passing. I remember one time this happened in particular.

 My family and I sat in our seats, passing books and snacks and getting situated as other passengers with mobility issues boarded. I looked up as one woman walked onto the plane. On her way to her seat she lost her balance and nearly fell. She must have caught the concern in my eyes, for when she steadied herself she looked my way and winked. With a smile she found her seat.

Such a tiny moment. A millisecond, really. But I have remembered her wink for years. She could have taken offense that I was watching her and scowled. She could have ignored me in the face of her own struggle. But instead she took that moment to reassure me that she was okay.

Is that as profound to you as it is to me?

We spent some time with dear friends last week, and one of our discussions has been running through my mind...along with this memory of the dear woman on the airplane.

Our friends were talking about how during surgeries, hospitalizations, or whatever trying event we're going through, we need to remember that just because that is the most important/difficult thing in our lives at that moment doesn't mean it is the most important thing in someone else's life...or that we're the only ones going through a difficult time. You can't say, "Yeah, sorry about that, but my brother/aunt/cousin/friend is in the hospital, so I'm really focused on that right now." You have to continue to invest in other people's lives and realize that they are going through "stuff", too.

To me, that's exactly what that woman on the plane did. She was struggling, and she looked past her own pain to comfort someone else. Every time I remember her I'm amazed. What grace. I hope I can live a life that extends such grace to everyone, and that looks past my own struggle to help someone in theirs.

Your Blogger,