Acceptance of Circumstance: Does this have to mean the loss of HOPE?

Acceptance of Circumstance: Does this have to mean the loss of HOPE?
Our Giant Summer Sandbox

The past few weeks in our house summer has been at the center of deep discussion.  We are entering summer number 3 in cast.  For many families this is the point where they will most likely take a break from casting and move to a brace for summer.  Last summer, we took the bold move and left William out of cast for 10 days while we were on vacation.  Those 10 days were crammed with summer play.  We visited the pool as often as possible, spent 7 fabulous family days at the beach, we snapped countless pics of our little guy completely naked frolicking in the outdoor shower or traversing the path to the beach.  Each moment was firmly etched in my memory.  We were carefree and had the most fun.  We watched his spine and thankfully it's movement was minimal.  Fast forward and we are 6 weeks from our return to the beach.  We have rented a house which we can't afford at the same beach we have loved for going on 18 years.  Yes I did say we can't afford it but on the flip side it will be hard earned money we can't afford not to spend.  If summer is about making memories the memories made last year in those 10 days will have sustained my soul for what will be 365 days.  Taking time to feed your soul in a life riddled with unknowns is a good investment in our family.  I will be pimping out our old junk in a yard sale, hosting as many 31 parties as I can fit into the month of June, & yes selling my beloved 15 year anniversary present on EBay to pay for this trip.  When the boys have their feet hit the sand and the sound of the waves wash away a year of heavy it will be worth every minute spent in preparation.

As of this minute, summer is scheduled for 1 week.  It will be 9 days of out of cast time.  We are now discussing extending the summer by 1 more week.  That would equal 16 days out of cast.  It seems stupid that something so simple as 7 extra days has plagued us to this degree.  The arguments on both sides are equally compelling.

 We have come so far, do we really want to risk regression by taking those 7 extra days?  Although Williams numbers have stayed the same for the past 4 casts, the appearance and alignment of his spine has definitely improved.  Is this worth risking? 
 
The other side: If his spine is going to hold it won't move in the extra week.  He has had 3 summers in cast and is looking at at least another year ahead, he deserves this break. 
 

As I have contemplated both sides to this debate I have been hit with so many stupid thoughts and emotions.  Each year as we approach summer I have told myself we would take a brace break at XXX point.  Each time that point draws near I convince myself we are almost at the finish line and it's not worth risking his outcome.  There was so much HOPE that filled these decisions and yet I find myself facing this for summer #3.  I fear in some ways that my acceptance of our circumstance has hampered the HOPE that has fueled us this far.  Chad is my rock.  His HOPE has never wavered.  He is steadfast and strong.  He is the one who answers questions from our tiny toddler with affirmative answers.  You have to wear your cast because without it your spine will curve and hurt your heart.  Me I come up with analogies and dissertation to convince him it is cool. I am the one pushing for the extra week while my beloved is holding the HOPE that this might be the one.

There is no good answer or solution to this query.  If we choose to enjoy our two weeks we will never really know how it affected the outcome.  We have stayed true for 3 years and he has thrived in cast.  There is the side of me that hates to test fate in that manner.  The other side sees a little boy who has been a trooper as his big brother has enjoyed 3 pool parties in the first week of summer, a Papaw who has kept his boat in the barn for the past 3 summers because he couldn't handle the thought of going out without his buddy & a very pale family with a house that looks like a toy box has thrown up during our first 100 degree weekend this year.  Neither decision will come easy and we will hopefully support each other in whichever road we choose.

  “Hope Smiles from the threshold of the year to come, Whispering 'it will be happier'...”
―    Alfred Tennyson 
 

The whisper of the beginning of our summer say's it will be happier.  It is up to us to make this happen.  Neither acceptance of circumstance nor the decision we make can damper the ever present smile from HOPE.  It is nestled inside each step and moves us forward with each new twist in the road.

Until next time, Keep it Curvy~

Catie (Scoliosis Sucks)D.

Stay tuned for June-Scoliosis Awareness Month!  We are planning to paint the blog with all things CuRvY!  30 days of inspiration from our Lucky Cast Club Friends!

Comments

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  • I love reading your posts, Catie. I personally don't have a child who is in a cast, but I am the aunt of Rylie Shepherd, who is. I can't thank you enough for putting into words and putting it out there how all of us are feeling. I can't even begin to imagine dealing with all of these emotions and decisions. I pray daily for all of you who are, and ask that God continue to bless you and give you strength. God is giving you "muscles" that you will need later on. We may never know why, but he has a purpose for why William and his family are going through all this. Thank goodness for the HUGE support group that you all are a part of. Without it, this journey would be much harder. Keep your chin up! Smile!

  • In reply to flttrbyjp1:

    We adore Rylie & the entire Shepherd family! They have enriched our journey and become lifelong friends. It is the support like yours that makes each bump in the road easier. Thank you for reading our stories. Hugs to your sweet Rylie's Aunt!

  • Dear Catie,
    I have been reading your posts for many months about your child's Infantile Scoliosis (which I didn't know existed)...because I have Scoliosis. Diagnosed when I was 13 yrs. old, when I was 24 in 1976 I had the surgery with a harrington rod. One month in the hospital, 9 months in a cast, and 3 months in a brace...but it was a miracle for me!

    Hope, is why I write to you now. For me, this year has brought a lot of "looking back." Maybe with a certain objectivity that only a 60th birthday can bring. But from one mother to another...I say hope is large!

    Scoliosis (even with the pain and disfigurement) did not seem to stop me much. Graduated from the University of Cincinnati from their very selective School of Design, Architecture, Art and Planning...worked as a graphic designer in Chicago, regularly jogged 5 miles, and achieved the VP, Director of Design position at a large PR firm. I met a fantastic, smart, hardworking, handsome man who wanted to marry me...we had two children while I continued to work and both were natural deliveries. After the second child I started my own design business and have been working on my own for 20 years. This year I am starting a new online business centered on my personal passion, and major physical activity---extreme gardening. Still happily married, my daughter is a University of Cincinnati DAAP--Fine Arts graduate, and my son is finishing his sophomore year at UC. We live in a lovely home on 2 acres in the far west suburbs of Chicago. I've been a lucky girl!

    That's all the really great stuff! The not so great part is that my smart, talented, beautiful, sweet daughter is plagued with emotional health problems that have greatly increased over the last 4 years. Multiple doctors, psychiatrists, therapists, and a daily regiment of 5 medications finds us today with a young adult barely able to get out of bed and function. But we're working on it!

    When my children were young I worried and watched to be sure they didn't have Scoliosis. Of course you know, mothers feel their children's pain. Thankfully, Scoliosis did not appear. But other things can happen, and beyond our control. Hope for our daughter is a daily exercise for us.

    Catie, my wish for you is that you keep your hope...and see that your child can have an excellent life in spite of (or maybe even because of) his Scoliosis. And that your life is exceptional too.

    My best to all,
    Kathleen

  • In reply to kskaska:

    Dear Kathleen~ I am writing through tears. Your beautiful testimonial has touched my soul in ways I feel words can't express. Hope has a permanent home in our house. Although it may seem it has taken an extended vacation at times I have wonderful people like you to share your stories of HOPE, Strength and Triumph with me. These gentle reminders have encouraged & sustained us through 3 relatively short years.

    My heart is plagued for your daughter. I have lived in the throws of depression and know how cripling mental illness can be on both the victim and family. When I was at my lowest the dream of the Lucky Cast Club came to me. Through one of my deepest sorrows I found light. I will keep your daughter & family firmly in my heart and prayers.

    All My Best~
    Catie D

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