Hope Does Indeed Float.


Hope is the most exciting thing in life and if you honestly believe that love is out there, it will come. And even if it doesn’t come straight away there is still that chance all through your life that it will.” ~ Josh Hartnett

So I might modify this quote a bit, in that I think that whether you are talking about love, or trying to conceive a baby, or waiting for a phone call to have someone tell you you can bring your child home from the NICU, expecting a call to see if you got a job that you really wanted (or that you want to win the lottery like me:)), or you have a diagnosis and are waiting to hear how you are doing…all of these moments in time, contain one very powerful emotion:  hope.

Today, I woke up full of hope.  E had a medical study done today that would inform us if she could finally drink thin liquids.  In my bones, I knew it was time, that she could probably do it. 4 weeks ago, I didn’t feel that way, but now I knew, but I still had to hope.

Like most Doctors appointments we go to, getting there, getting situated and settling in for the procedure feels fairly routine. But today, as E sat in the blue plastic, booster-like chair with the x-ray machine positioned over her throat waiting for her swallow-study, my heart started skipping and E started bouncing.  She laughed, giggled and moved up and down as I tried to stick the unfamiliar bottle nipple in her mouth.  The fabulous OT, Michelle, who worked with kids in the NICU shouted encouragement from behind the wall where she stood with the doctor watching the results. I could hear her faintly and E started yelling, and smiling and then finally she started drinking. Slowly, I could see her swallowing. Take a break. Swallow more. I could tell I was holding my breath.  We were so close. They weren’t stopping me…hope was in my pulse, in my breath and in my shaking hands.

They weren’t stopping me.  She kept drinking.  Still no stopping, we were out of the woods.

She did it.

Michelle came out and over and I shook as she gave me a hug, and put my arms in the air and yelled yay!!!  We did it! We made it!

Tears welled in my eyes.  These are the milestones of progress. It’s not walking or crawling, but E can now have water, or juice, or something besides milk.  She was getting better control, To control her oral motor skills means this will help her eating and ultimately her ability to speak.

The type of CP that E has been tentatively diagnosed with affects her coordination. Every time we say it outloud, we hope. Hope for her future, hope for little steps in the right direction. To be able to coordinate her swallow is the thing that nearly took her life before, and now the thing that has injected new hope for her future.

This all seems very timely as last Friday in preparation for our trip to see Garth Brooks in Las Vegas, I asked people to give songs for a playlist that makes you want to dance.  Many people did, which I will include in this Friday’s post, but as I sat in the show knowing we would have the unique opportunity to meet Mr. Brooks and Ms. Yearwood after the show, I could feel the anticipation in my blood.

If you haven’t seen the show, it’s fantastic and rather than it just being all Garth songs, he takes you on the journey of music and how it interacted and intersected with his life growing up and into his adult years.  His music is for most the best part, but he is an amazing storyteller and he is very funny and entertaining.

At one point in the show, he talks about a Bob Dylan song that he was asked to cover for the Sandra Bullock/Harry Connick Jr. movie “Hope Floats.” I never quite understood the title until today.  As Mr. Brooks started to sing the words to “To Make you Feel my Love” I started to bawl. Literally sobbing. Thank god, everyone around me was watching him intently, and it was dark so they couldn’t the tears streaming down my face.

At different points in my life there have been 2 songs that have often given me pause, “Unanswered Prayers” and “To Make you feel my Love.”  It was these 2 songs, that I sang to my babies everyday in the NICU and now as lullabies.  For me, they ground me in the love and faith that we are meant to all be together because as a family we know hope.  I would go to the ends of the earth for Q and E  and despite 2 long years of prayers to get pregnant it was these 2 precious angels that I was so blessed to receive.

Once I collected myself and the show ended, we went backstage.  Steve Wynn was also at the show so we all waited patiently while they had a visit.  When it was our turn, Garth and Tricia were amazing in their ability to talk with each of us as if we were the only ones in the room, yet, appealing to the group of us. Miss Molly was our sweet and lovely guide through this unique opportunity and so when I started choking and crying as I told them the story of how these songs meant so much to me on the deepest possible level, she didn’t flinch and Mr. Brooks leaned over and gave me a hug. Simply lovely.

For the record, Mr. Brooks and Ms. Yearwood might be 2 of the most gracious people I have ever met.

Through the words in the music, through the faith that we are not given more than we can handle, through the people we love and try to do the best we can how we can, through the hope we feel in the instant that you know you want something so desperately to be true, and through the hope we have that tomorrow will always bring ‘anewfavoriteday,’ I wish you a joyful day full of love, smiles and hope.

Hope my friends, does indeed float, you just need to make sure you reach up and grab it when you need it.

After the tears cleared, we got a very happy photo.

 

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About Shannon Pruitt from 'Mynewfavoriteday'

Welcome to 'mynewfavoriteday. This space is about gratitude and connecting through being open, vulnerable and real. I hope you will enjoy my take on motivation, inspiration and advocacy and will take the opportunity to tell me of your own thoughts and stories. Why I started 'mynewfavoriteday.' I am a childhood surviving, divorced, now happily married, IVF (and now natural pregnancy) success story, working mother of 2 amazing babies who were born 12 weeks premature. As life often seems to surprise you when you least expect it, we added another sweet baby girl M to our family in July of 2013. While our angel minis, Q and E are now 7 years old, our son, Q, has thrived while our daughter, E, has had a much more difficult journey. She is considered special needs and in September of 2012 was diagnosed with a rare genetic disorder called Angelman Syndrome. And so, as she has grown, so do we as individuals and as family. How to help her, how to celebrate our differences while allowing ourselves to cope with the challenges that we never knew to expect. Thus, while much of this blog is based on our experiences (good and not-so-good), it is also based on how we must not let ourselves become victims of our circumstances but rather advocate in our own lives. A little bit about me and who I am. In my professional life I am a marketer in the Entertainment Industry; however, ‘mynewfavoriteday,’ was not born of entertainment or marketing but rather as a pathway to help myself and others as we try to define who we are as parents, family members, spouses, friends, colleagues and people. I believe in never judging a book by its cover. Every cover is different, and no matter what your cover looks like, you never know how someone's book is written. Like mine. From the outside, you might never know what truly makes me who I am or what I believe. This blog explores the pages on the inside of my book. My vulnerabilities, fears, happiness, and all my triggers through the lens of being grateful for all the amazing blessings I know I have received but sometimes forget in the challenges of daily life. Thanks again for dropping by. I hope you will come back, subscribe, comment, share, and/or just hang out and be inspired or motivated to make each day for yourself or someone else 'anewfavoriteday.' By being here, you have certainly helped to make it mine. xo, Shannon

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16 Comments on “Hope Does Indeed Float.”

  1. Mike Sweeny (Dad Says:

    Awesome! good news.

    Reply

  2. Mrs. H Says:

    This is such a touching post so descriptive I felt like I was right there with you watching waiting for her to swallow. Great news!! Thanks for stopping by my blog yesterday on my SITS day!

    Reply

  3. tracy Says:

    Go E!!! What an exciting moment – thank you for re-living it for us so that we can be there and cheer for E along the way with you!!! Congratulations on yet another milestone that helped make yesterday a newfavoriteday indeed!!! we love you guys and continue to smile and send hugs virtually every day!!!

    Reply

  4. Scott Says:

    nice babe. good day for our darling E. she just keep chugging along. love u.

    Reply

  5. Nis Says:

    Gulp, sniff, sob you had me in tears! What a wonderful experience for you to see such a tangible improvement with Miss E!!! So, so thrilled for the years of apple juice drinking that are to follow. What a fabulous story, also, about Garth and Trisha (you know, because I’m on a first name basis with them…hahaha!). We saw him in concert years ago and he was a first-rate performer. Glad to hear that he and his wife are first-rate people as well. Love you!

    Reply

  6. Y'vonne Says:

    WTG E!

    Reply

  7. Deborah the Closet Monster Says:

    Hope my friends, does indeed float, you just need to make sure you reach up and grab it when you need it.
    So beautiful, it makes my heart ache with both its joy and its truth.

    Yay, E, and yay, you! ♥

    Reply

  8. Christine Says:

    This was so beautiful!! I found myself cheering right along with you, and then crying as I realized how much joy can be found in such a small, yet MAJOR, thing. It makes me realize how often I take for granted such things that are so critical! Thank you for sharing your joy, and giving me the reminder that there is so much to appreciate!

    Reply

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  1. Hope Floats – 1998 | jdc-witherton - November 21, 2011

    […] Hope Does Indeed Float. (mynewfavoriteday.com) […]

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