Monday, July 25, 2011

Cast #9

It's amazing to think less than two weeks ago we were soaking up the sun and sea in Florida with our beloved family.  The healing of that shoreline is still enough to fill my soul with sunshine if I close my eyes for a minute of silence.  I remember waking on one of our final days at the beach house, sitting on the back porch before the house woke and feeling the sunrise hot on my face.  The sound the ocean makes was like a gentle lullaby for my tired soul.  As I sat in the chair I could feel my body moving ever slightly back and forth as the tide and waves came crashing into the shore.  I closed my eyes and told myself no matter what next week brings remember this feeling. 
      Fast forward 9 days later and I am just now ready to digest and share what our return from the shore and trip to Chicago had to offer.  We spent one day home from Florida and then it was time to pack up and trek to Chicago.  We opted to stop in Terre Haute and watch Harry Potter to break up another day of travel.  The kids were sick of the car and this was honestly one the best things I think we could have done for all of us.  We arrived at the hotel long enough to eat and sleep.  6:30 and we were headed to the hospital.  We were met in the parking lot by my friend Tracy.  She so kindly decided to sit with all the Lucky Cast Club families that day even though her beautiful Massimo wasn't scheduled for 4 more weeks.  I can't thank her enough for giving of herself to all of us tired families.  Our room was a bustling home for LCC families and our sweet friends the Dobbs family joined us next door.  That was one of those days where you wish they could squeeze just one more bed in the already crowded room.  Kiya, Giana, & Iljiana were the other 3 beautiful ladies in our William's life for the day.  The day was long and stressful and yet I was completely surrounded by the love of my dear friends. 
      William was number 3 of the day.  We followed the routine and went to x-ray then back to get ready for William to head to pre-op.  We looked at William's film and both felt it looked better than the last.  William went in and an hour later Dr. Hammerberg came out.  He showed us the graph and my eyes were trained in the normal position around 30 degrees, only this time there was no mark in the 30 slot.  I looked at the graph and looked at Dr. H.  Does that say 10-11 degrees.  He said yes.  Tears were forming and I will tell you they haven't left yet.  He said yes that is a great number from where he started.  He said I am not ready to brace him yet though.  He has some alignment issues and I think casting is where he needs to be.  See you in October and we will just stay on this course. 
      I guess I need to explain what we were seeing.  William is at 11 degrees out of his cast.  His blessed little spine gained 20 degrees correction and held it on his own for his 14 days out of cast.  This to me is nothing short of miraculous.  A thank you is needed to all who have prayed for our William and a special thank you to my niece Emily who spend 2 hours praying at the Grotto at Notre Dame for our sweet boy.  There is  a special place in Gods ear for the prayers of youth.  At 11 degrees most kids are given the go for one or two more casts then onto a brace.  William upon careful scrutiny doesn't have the normal appearance of 11 degrees.  His torso alignment is still off and his rib cage is not growing evenly.  If they were to brace him with this abnormal growth pattern, his spine would begin to grow unevenly in a short time frame.  Allowing some time to rejoice at our progress and cope with the prolonged casting we are finally at a point where we can share our news. 
      There is a huge lesson I have learned from this news.  There is guilt in all aspects of this process.  Guilt when others reach a milestone and you are stuck and guilt when your child reaches a milestone and others don't.  I had a moment with two of my dearest friends on cast day and shortly after.  My beautiful Sarah had a horrible day of waiting with our beloved Giana.  She was #6 and we nearly beat them home from Chicago that day and they live in a suburb of the city.  When Sarah asked me what Dr. H said I had such immense guilt that we were given our news and our beautiful Giana might not.  I said it was good Sarah but hesitated to say the number out loud.  She said Catie, we are best friends and share everything good and bad, don't ever not tell me.  As I told my Sarah I saw the joy in her eyes.  Joy for my sweet boy.  We have talked nearly everyday since and she has helped me with all my irrational and rational thoughts regarding our path.  I will never not tell you again my friend.  To my other dear friend Darrell and his sweet Dylan.  Thank you for erasing my guilt with you as well.  I can't help but still have small pangs of sadness when I think of how long you have been fighting for your boy but know it is your fight that has always given me strength to endure. 
        A final thought as I move forward in adjusting to cast #9 and all those to come ahead: The Lucky Cast Club will only move forward and grow if it has a strong foundation to build on.  It was started with families who some are moving forward and some are still in the process. It was started to be here supporting families long after our children are grown.  Cast #9 has renewed my resolve to keep us moving in a forward momentum and nourishing the roots that are taking hold in the centers we support.  Onward and Upwards my friends. 

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