in which Elmo makes music: and we attempt normalcy.

December 22, 2013, Michaela Evanow, 15 Comments

We don’t get out much with Florence. We are waiting for her $8,000 stroller to arrive. It was recently approved (yipee!), but we still have to wait. We made it very clear that it’s urgent and we are seriously lacking in the mobility department.

So when we won tickets through Canuck Place to Elmo Makes Music, it was bittersweet. At first I wailed as I held hands with a dear friend on our couch, and we both cried over the injustice of it. It wasn’t wheelchair accessible, and the only stroller we have now is a Uppa Baby Vista with the newborn bassinet. If we did go to the show, she would be flat and unable to see anything. I decided I couldn’t take her, it would be too hard and heartbreaking. My heart was swollen with grief though, and after some thought, I pushed my apprehension aside, and decided that even if we lasted five minutes at the show, it would be worth it. We would go.

I realized part of the reason I didn’t want to take her was because I was a bit afraid. I wasn’t sure how she would react if she couldn’t engage in the show, if she only stared at the laser lights on the ceiling. A blog reader, who’s also a pediatric physiotherapist, suggested I ask about borrowing one. I emailed the distributor, and because it happens to be Christmas break, we were able to borrow the demo version of our future stroller—the only stroller that Florence can tolerate.

So we decked her out in her Elmo Christmas socks, and her Elmo G Tube button. We dressed her in layers and timed her feeding schedule just right, packed her suction machine, and headed out.20131222-182441.jpgShe looks like such a big girl in this chair. Again, it’s a bittersweet experience to see your baby in a pediatric wheelchair. She’s happy and somewhat upright and very well supported, so feelings aside, we are thrilled to someday soon have the Kimba Spring in our possession.20131222-182532.jpg 20131222-182936.jpg

Right before the show started, Elmo’s voice came across the loudspeaker, explaining that the show would start soon. Florence’s face lit right up, and I felt the swell of tears prick my eyes. Every parents wants their child to see things, do things, feel things. We want our children to belong, and be a part of the world outside our home. I want Florence to experience everything. It was incredibly emotional when the show finally began. Here we are, I thought, in a place I always thought we would be in. However, my dreams for Florence were dashed hard after her first hospitalization. She was always my breastfed, solid food experimenting baby. I dreaded the day she might get weaker, but little did I know it would happen so fast, so suddenly in one fowl swoop.

Being in the stadium reminded me of all we’ve lost, rather, all that Florence has lost in her babyhood. And yet, when the lights turned low, and the music exploded, her face said it all: I’m happy, mama, and this is amazing! Her little tummy started pumping up and down. Her stomach muscles remain the strongest muscle in her body below her face, and she often expresses herself through her swelling stomach. Dancing, laughing, excitement, frustration: we see it all ripple across that precious belly. When I realized she wasn’t frightened, but full of joy, I started to cry right into my lap. I cried embarrassed tears, as the silly, furry monsters on stage sang and danced. I glanced at the security guard, who knew we were from Canuck Place (we were the only ones allowed to bring our “stroller” downstairs and had a chair removed for the stroller), and realized I was a sobbing mess when she turned her eyes down and gave me a tiny smile. For awhile there, the stage was a blur, a watercolored mess. When Elmo made his appearance, I grabbed her pudgy hand and yelped through my tears, “it’s Elmo, it’s Elmo!”

She lifted her eyes up to mine and smiled big, letting her laughter escape.

“El-ma!” She said.

This, this is what it feels like to be a mama without a care in the world, I thought. This is what I long for.20131222-182509.jpg

In the back of my mind, as children hacked away behind and beside us, I kept thinking, this could put her in the hospital, this exposure to germs. This very act is threatening her life.

We have kept her very sheltered since she has become so fragile. It’s not fair, it’s not okay with me, and yet, this is how we function. As the show went on, I realized that she needs to experience certain things, and we need to be pushed past our comfort zone, just a little bit. It’s a funny mix of adrenaline, guilt, stress, joy and exhilaration. It’s a complex world we live in, along with other families we have come to know through my blog. I know they are functioning in this same world.

With Christmas just around the corner, I can only think about making it through the holiday season without a hospitalization. If we can just get through Christmas Day, oh and then our last Canuck Place stay of the year, also New Year’s, and then…

It’s sad and exhausting to barter with the common cold.

But alas, we made it through Elmo Makes Music. We embraced normalcy, and we made it. She ate up the delectable world of Sesame Street through her rimmed eyes, laughed, smiled and stared in wonder with the “don’t bother me, I’m watching my show” look of determination.

It was perfect.

This morning I heard her babble, a few minutes after the nurse left, and so I went into her room to check on her at 5:30AM. She was fast asleep, a smile on her face.

Jay,” I whispered as I crawled back in bed, “she was just talking in her sleep and smiling!

We held hands under the covers and smiled at each other.

She’s dreaming of Elmo,” I sighed.
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She got to see so many characters up close, including Elmo and Cookie Monster (who nearly made her cry). She was such a brave little bird, even as the confetti rockets went off at the end. She loved every minute of it.

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20131222-182525.jpgWe wouldn’t have done this without Canuck Place and our borrowed stroller. Thank you to everyone involved!

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15 Comments

  • Reply Danielle December 30, 2013 at 2:17 PM

    I waited to read this one as I wanted to have full attention a cup of tea and a clear mind. What a read, as tears were welling up and I just couldn’t see the screen then my favorite part:

    “She ate up the delectable world of Sesame Street through her rimmed eyes, laughed, smiled and stared in wonder with the “don’t bother me, I’m watching my show” look of determination.” Actually started laughing through tears! So wonderful.

    • Reply Michaela. December 30, 2013 at 2:24 PM

      Ooh thanks Danielle 🙂

  • Reply Sandra Auker December 23, 2013 at 10:57 PM

    What a special blessing for you 3!
    Flo shines with joy and amazement –
    she is so precious! Great to see her
    beautiful smiles. Bittersweet, yes, but
    memories that will be etched in your
    hearts forever

    • Reply Michaela. December 24, 2013 at 8:26 AM

      Indeed, they are beautiful memories!

  • Reply Wendy December 23, 2013 at 10:22 PM

    I can’t get enough of this story, and the photos of Flo…and the sweet image of Flo’s tummy ‘pumping up and down’…amazing. Thank you.

    • Reply Michaela. December 24, 2013 at 8:17 AM

      thanks Wendy. it is truly the sweetest thing watching her pump her tummy 🙂

  • Reply chichipress December 23, 2013 at 1:04 PM

    This is about close as to perfect as you can get in this fallen world – MAGICAL!
    Taking in all of Flo’s reactions ~ my heart is overflowing… as much as her cute belly was that evening!!

    • Reply Michaela. December 24, 2013 at 8:25 AM

      Magical! Definitely! The simple things brung such wonder don’t they?

  • Reply Helen December 23, 2013 at 11:26 AM

    Thank you for sharing. Yesterday my ten month old held a helium balloon for the first time and i told my husband that there is something magical about seeing your kids happy. As i read your post, i couldn’t stop crying and feeling so emotional. I’m so glad it all worked out, and I love how joyful little florence is.

    • Reply Michaela. December 24, 2013 at 8:24 AM

      Helen, thank you for your tender heart, and for sharing with me!

  • Reply Kali December 23, 2013 at 10:27 AM

    This is so precious! I am so happy for your family…thank-you so much for sharing your sweet story with us. Darling little Flo, and brave you for going for it!

    • Reply Michaela. December 24, 2013 at 8:24 AM

      Thank you Kali, for cheering us on. xo

  • Reply TamaraG December 23, 2013 at 10:06 AM

    *Flo… Oh autocorrect.

  • Reply TamaraG December 23, 2013 at 10:05 AM

    How wonderful! It looks like you all had an incredible evening, especially Flow. I love that you woke to her dreaming and filled with so much joy. What a special moment!

    Merry Christmas to you all!

    • Reply Michaela. December 24, 2013 at 8:23 AM

      Thanks Tamara, for sharing in this joy with us!

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