Dear Self...Lessons learned 3.5 years post diagnosis

With a steady influx of families new to this diagnosis, it takes you back to  the early days of uncertainty and shear terror at what lies ahead.  I have spent so much time looking forward that looking back is often too painful to face.  I remember the first few years as a constant roller coaster of emotions.  I went through moments of wanting to talk about nothing else to moments of wanting to pretend it was all just a dream.  But I had to ride each wave to reach the shore and so the moments when I sat idle seemed to want to drag me under.

Dear Self,

It is hard to believe the journey you originally thought would take 2 years to complete has now reached the 3.5 year mark.  I wish I could go back in time and tell you to stop watching the clock.  Clock watching  ruined friendships, distracted you from your work and held your emotions captive for far too long.  It would have been easier to enter the process without expectation and count each cast as a success as our Iron Will was given precious time to grow.  I look back on the angst and torment you felt each time you had to pass William to the Anesthesia team and wish I could remind you he would be fine, they love your boy and he was always in precious skilled hands.  He always came back to you and was loved and cared for while he was away.  I remember William coming out of Anesthesia the first, second, third, fourth.... time.  Each time you would think how many times can I watch him fight and cry, he must be terrified and I am the one who allowed this to happen.  Yet now I see how when we were finally able to explain the process and gently prepare him for what was going to happen he was able to leave without fear and know we would be there when he woke.  He had to relearn many of the milestones he had just worked so hard to concur, but he did  learn them all again.  Crawling, walking, turning over, getting up and down stairs, getting up from the middle of the room, riding a bike, are all milestones he sailed through once he found his balance.  The Hospital you once feared, has over time become a second home.  You have made lifelong friends in those hallowed halls.  You have rejoiced at the triumphs of others and cried for your friends sorrow.  You have found new love in what you once deemed hopeless.  You started this process scared and alone.  With a shared dream, you have created a community free from judgement and whose core mission is to spread HOPE.  Although you are still in this journey, you can now say you are still in this journey!  You no longer fear the unknown, rather embrace what you know.  You have ridden the roller coaster and can look beside and behind you and see an entire community of Lucky Cast Club clad friends along for the ride.  You don't know what tomorrow brings, but your family of four has grown to a community of 100's!  You are still swimming and have learned to relax and let the wave carry you.

Until next time, Keep it CuRvY and just keep swimming~

Catie(Scoliosis Sucks) D.

 

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