Thursday, April 28, 2011

HOPE prevails; Scoliosis Remains

Here is a letter I wrote on Wednesday, April 27th, following our 8th cast at Shriners....

Family and Friends,
Not but about a half hour ago, I was not ready to sit down and share the update of Jackson. My head and heart were battling with the turmoil of an emotional tug-of-war Adam and I have been feeling since yesterday morning. We have had heavy hearts and a lot of confusion about how to feel and it's been very difficult for either of us to pinoint to ourselves, let alone anyone else, why we feel the way we do. But just as I was resting next to my superhero wiating for him to fall asleep...watching him quietly and peacefully fade to his nap, he opened his eyes and out of nowhere said, "Mama! " and then gave me a thumbs up. It was then I knew it was time.

Yesterday Superhero visited Shriners Hospital for Children for the 8th time. At the start of an early day, Jackson was alert, excited and already stoic and brave sporting his new Buzz Lightyear backpack and giving hugs to Nana who was staying with his brother and sister, ready to face the day. Driving through the dawn with raindrops falling, Adam and I were quiet and melancholy. We were fighting the blues of yet another long excursion and draining day of cast life. We were feeling sad. We were feeling angry once again with scoliosis and what it has meant to our son. Adam particularly struggled; we tend to trade off on each cast, but it was hitting him hard today. Neither of us, since early on in the journey, had felt this fragile going into a cast day. There was something about it that we just coudln't make peace with, and yet we were trudging forward with a fragile hope that maybe we'd get good numbers..good correction...good news.

We were also embracing the day with a bit of happines in knowing that a handful of our Lucky Cast Club family; some of my nearest and dearest friends in life now, and their beautiful famlies would also be there all together for the first time ever! Sarah and Ryan with Giana and big sister, Rylie; Catie and Chad with "Iron Will" and big brother, Cody, and Cathy and David with adorable Kiya. We walked into the "holding" area to the joy of the feel in the air: family, camaraderie, empathy, support, smiles, understanding, compassion, experience, love, love and more love. Sporting our "Lucky Cast Club" t-shirts (everyone), we absolutely looked a team in uniform ready to face the big game. It was incredibly powerful and an awesome sight!

The pre-op process went smoothly and fairly quickly. The team at Shriners was on their game as well. And Jackson...with much dialogue the days leading up to casting about remembering this and that...the medicine, the pulse ox light, the "arm hugger", etc...he showed off his Superhero fight and shed not a tear. This was the first time ever in the journey that Jackson didn't even whince when nurse Maggie put the pulse ox hold on his tiny finger or when nurse Ruby gave him his "happy juice" medicine. We were indeed, very proud of our baby.

You know that expression, "the light at the end of the tunnel"? I think it's safe to say we see the light.

One of the many steps in prepping Jackson for the surgery is to have him go see our friend Mister Tom, the x-ray man. Like a pro, little man stood on the the pedastel and we play a game of "freeze" while Tom "take a picture" of his back. I had sworn to myself that this time, I would not look at the xray when given the opportunity as in the past. I just didn't want to see disappointment. I didnt want to see his hips shifted all the way to the left, unaligned with his spinal cord. I didn't want to see a curve. But Papa and Adam told me I had to come see. "You want to see this," I believe were their exact words. So I succumbed to peer pressure and did. I believe Tom's words were, "This is straight. I don't even know what you guys are doing here today."...Yet I still saw those hips...completely shifted to the left, so the beautifully straight spinal cord I was looking at took backstage to them and I coudn't nor didn't, rejoice. Yet.

Slighty before Jackson was to be taken back into the pre-op room, Dr. H came to the holding pen to answer questions we had previously emailed him about the lower curve and the hips. This face-to-face was new to us, so I wasn't really prepared nor did I know what to expect. I arrived to see him looking at Jackson's back and already talking with Adam about what he saw. It was later Adam told me that at first glance he said, "Looks straight.". Further discussion addressed the scoliosis as the cause for the hips shifting...for their "list" to the left and that the cast would never cure scoliosis, merely correct it for as long as possible. I didnt know how to feel with this..assurance? I didn't feel assured or relieved.

Jackson went into surgery for cast #8 around 10:00. About 45 minutes later we were paged to meet Dr. H and his head nurse/assistant, Linda to hear the update. Up until this cast, we had always been given numbers..not today. Today was something different. Today was something we have been praying was shocking. Dr. H shared with us that Jackson did well. That things look good. These had all been said before, so it took me by surprise when he then proceeded to say that we could probably start looking at molding him for his brace. His plan was to see how this #8 would he'll hold up when it's off and if it still looks solid and straight then he'll have one more cast at which point he'll be molded for his brace. stops for a milisecond ..............SHOCK................. waiting for joy....waiting for elation.......waiting to feel.........something.

Dad cried. He hugged us huge. He smiled and shook us and with elation and rejoicement, reminded Adam and I that this is what we've been holding on for! What a happy day!

Let me start by saying, Thank God. Thank God for Shriners...for Dr. Peter Sturm and Dr. H...for the internet support site that led us to Shriners....for Dr. Min Mehta who is the pioneer doctor across "the pond" in England who is responsible for this type of Early Treatment EDF (elongation, derotation, flexion) casting procedure that has seemingly begun to correct our son's spine. There are many waves of gratitude that slowly are showing themselves to my heart. To all of you....who have religiously prayed for our son....for our family...for correction...we deeply and soundly believe this place we are now at is because of your prayers and your love and your never giving up on Jackson and our family...We are grateful.

But we are scared. We are confused. We are, to be quite honest, a but numb. For months, almost half of Jackson's life, we have been dreaming and hoping for this day to come. For the news of bracing to be something in our reality and to celebrate it. So yesterday was so so difficult when neither of us felt this immediate joy and exhuberance with the news. We felt angry at ourselves and confused at our lack of emotion. It may be something we'll never fully be able to explain to each ofyou. One unaware of the in's and out's of this beast might be upset to hear of our lack of joy. Shocked and confused by our blues and perhaps let down by our reaction. I wouldn't blame you. We don't expect anyone to fully grasp or get it, but we certainly embrace and want your happiness for us and our superhero! It might just help us get there, too!

At this point, we can only attribute it to this: Scoliosis does not go away. It will be everpresent in our son's life and though we are close to being rid of the turmoils and dread of casts, we enter into a new realm. We soon meet up against a new beast; the brace. I will not take this celebratory moment to go into details about what that entails. This update is not about the brace. It is not about bad news. And that is what I think Jackson's thumbs up in bed was telling me...

It is about this:
Soon...very soon..our son will be able to take bubble baths when his best friend and twin brother, Cameron, does. He will be able to sing and dance in rain drops and delight in what that feels like if the moment shows itself. He will say goodbye to being poked and prodded and x-reayed and put under anesthesia every 10 weeks of his life...He will be, in some ways, free. Of casts, anyway. And like any superhero does, he will lead the way...he wil teach his friends what the brace life is my friend said so beautifully, "blaze new trails and chart new courses," and we know he will venture into new terrain, paving the way for others to follow with his red cape blowing fearlessly in the wind behind him.

Hope prevails!

Please continue to pray for Jackson. That his spine holds. That we as his parents...his advocates...stay strong and allow ourselves to embrace the joy we deserve to feel. That HE deserves for us to feel. That we make the right decisions that need to be made in the next few months about our trip to Florida and when to take him out of cast so that we won't compromise his progress and the chance at freedom.

Our heartfelt gratitude to all of you for what you've been to us through this and what you'll continue to be for us as face the next chapter of scoliosis. We so appreciate and love you for this.

Much love and gratitude and hope,
Chrissy and Adam

Another one down...

Cast Day for #8 met Shriner's with a flood of wonderful Lucky Cast Club friends.  4 fabulous members and their families as well as 2 additional cast friends filled the Shriner's Chicago halls with all the emotion a cast day can bring.  Sweet Quinn and her beautiful mommy were the first to greet us when we entered the Shriner's lobby.  We soon were heading into our room to meet our sweet friend Kiya, followed by Superhero Jackson and our beautiful Giana.  I so wish all casting days could be filled with so much love and camaraderie.  Our little ones were ushered to radiography and finally filed to the OR one by one. Papa Sherman, Jackson's Grandpa, setup a coffee shop outside the Pre-op doors to wait as each family came out.  Although Papa Sherman is Jackson's biological grandpa, we have all adopted him as our own.  This was such a bright spot on our day.  He was there to support, talk and embrace each of us.  We all love him for this special gift. 
         Another bright gift from this wait time was Cody having Rylee to play with.  So often Cody is the only sibling along for the ride.  We have made a conscious decision to include him in our cast trips because of the distance we have to travel.  The few times we left him home were very tough days for all of us.  Cody felt left behind and we felt incomplete.  I believe the recovery for our little friends is blessed with a special bond when their beloved siblings can be there for support.  Barring extraordinary circumstance, Cody travels with us.  A big Thank you to Rylee and the Bancsy family for making him feel included in the day. 
         I have written so many times of the flurry that starts when each little one returns from the OR.  William came out of PACU and was ready for mom and dad.  He was very upset and just wanted to be held.  I went into my mother tiger mode and wanted to whisk him away from the chaos of routine that occurs once they exit the OR.  I know so many families who felt the same way that day.  Dr. Hammerberg gave us a beautiful gift with the use of the new graph.  It shows two lines, one plotting their out of cast number and the second plotting in cast numbers.  Although William stayed the same out of cast, he did achieve a few more precious degrees of correction in cast.  Our story for now will continue.  William's journey is still a journey, but the graph gave us renewed promise, the process is working. 
          There is another amazing story from cast day.  One that brought tears to my usually stoic husband's eyes.  It is not our story to tell so I will just tell you GOD is good, all the time.  We are going to allow the author of this story to share when they are ready. 
           A big thank you for continued prayers for our beautiful boy and his beautiful friends.  The club is growing bigger with each passing day. I was initially sad at the influx of new families, but am overjoyed that they were giving casting as a treatment option and are such wonderful enhancements to our Lucky Cast Club families.  With each new family our hearts grow and embrace them.  We are blessed to have such wonderful community of support.  I am going to leave you with some photos from our cast day.   I am hoping next week my post will be a little more articulate.  Today I am still trying to debrief my own heart and soul from the week of frenzy we have had.  Prayers are going out for our sweet Kaity who will be undergoing her Chiara decompression surgery tomorrow. 


Friday, April 22, 2011

Good Friday

I have always tried very hard to be super sensitive to the beliefs of others.  In our world, scoliosis doesn't care what religion you are.  It doesn't care if you are religious at all as a matter of fact.  Our extended family is a blend of so many religions and beliefs.  We are Catholic, Jewish, Atheist, Agnostic, Baptist, Pentecostal, & Christian.  I was raised Catholic and very open to all beliefs.  Today however, I am focused on sweet Mary, the mother of Jesus.  I believe her story of today resonates more with me and with all of the religions in my family then any other.  I weep when I think of what she must have felt, watching her beloved son suffer so unmercifully and die on the cross.  It doesn't matter what religious faith you are or if you believe in the end that he arose from the dead to free us from our sins, because anyone who is a parent can put themselves in Mary's shoes.  The loss, the fear, the faith she must have had to endure what was happening.

Our Jewish family is celebrating Passover this week.  Passover is the observance of the Israelites freedom from slavery.  They also had to have blind faith in a higher power to endure the plague that was sent upon Egypt and to follow Moses to the promised land.  

Our children aren't being nailed to a cross or witnessing plague and devastation to their land, but they are enduring trials that to their little lives and ours are huge.  I am drawing from the lessons of what happened long ago to find strength to endure whatever comes our way next week.  I believe there is a greater plan for not just our childrens lives but our lives as well.  Mary endured because she knew through her amazing faith that her son's life was meant to do something bigger than we all could comprehend.  I am going to try to use her example to make a difference.  I am going to try to have the same blind faith to trust in the bigger plan. 

I would like to send Easter Blessings & Passover Blessings to all our friends and family. 

Tuesday, April 19, 2011

April showers and new flowers.

I started this blogpost several times and have had to start over once again.  Before I can tell  you of our clubs joy this week, I need to share a special story.  Our sweet friend and LCC member Kaity will undergo decompression surgery April 29, 2011 to reduce a chiari formation.  Sweet little Kaity will be in surgery for 4-5 hours and then spend approximately 5 days in Childrens Hospital of Detroit.  We are requesting prayers for our special friend and her dear sweet family.  In the Lucky Cast Club we share each others triumphs but we also share in each others pain.  God has a special plan for each of our children and we are waiting to see what he reveals in their lives.  Kaity and her family have shared their journey with us and we are all better having them in our lives.  But for the grace of God goes anyone of us.  We will be praying around the clock for Kaity's safe keeping and invite you to do the same. 

Saturday started out as any other cast off day.  What could have been ordinary turned to extraordinary.  We were determined not to have the trepidation that came with last cast off, so we talked to William about cast off day for a week.  Each time we would share that he had outgrown his old cast and it would be time for a new one.  We would end with a game of what color we are going to get.  William for some time was set that Pink would be his new color.  It has since changed, but I was determined if he wanted pink he would get it.  Ok so back to the story, William has known about cast off day and as everyday seems to be a birthyday in our house, he decided it was going to be a party.  What started out as a simple dinner with our family grew to a dinner party with cupcakes by 3 p.m. which left me 2.5 hours to plan a menu, bake, & clean house.  He loved the day and we are convinced this will remain a tradition.  Next time including EVERYONE who wants to join us.  The funny thing is I had grown resentful of cast off day.  To me it meant another trip to Chicago, readjustment and possible loss of correction.  It took William to show us that we needed to celebrate the past and prepare for our future. 
William was straight coming out of his cast, completely straight. This hasn't happened since cast #1.  He is starting to regress, but I am still hopeful we are holding in the 20's.  PLEASE let us be in the 20's. 

Moving on to our other friends.  Massi is enjoying Florida and most importantly Disney this week.  Tracy, his mommy, has done an amazing job juggling incast actvities and the taboos of casting such as water with Massi and her other two boys.  She posted last night a funny post about the Disney signs that read "Cast Members Only".  Her husband mentioned that Massi should be eligible for those rooms!  Too funny.  We think Massi should get the special baskstage pass as well!  Safe travels home we hope you had a magical time in the happiest place on earth! 

William shared a cast off weekend with two other great friends.  Giana came out of cast on Saturday with William.  She was able to enjoy a bubble bath including swim goggles with her sweet big sister Rylee!  Hooray for Giana.  We love you and can't wait to see you next week.  Cody is looking forward to having another sibling to play with on Tuesday, I wonder if Shriners is ready for Cody and Rylee though. 

The Justl Family had so many blessing this week.  Sweet Kiya had her first cast off at home on Sunday.  Miss Kiya was treated to a very special bubble bath from her mommy.  Another blast of good news from the Justl family came this morning in her families blog post.  Miss Kiya and her parents have started the process of adopting her sibling.  We are anxiously awaiting the news of a special delivery from South Korea.  Whether it's next month or next year, the Lucky Cast Club has more room for fabulous siblings!  We are overjoyed at your good news. 

As a final cast off for our Tuesday casting, Super Hero Jack will come out of his cast today!  We are sending strength, joy and love to the Miller family as they cast off #7 and join us for #8.  Although we don't know what each cast day will bring, the constant will always be love.  Cast day will bring the love of family and the love of your friends.  It is said the greatest of all gifts my friend, is Love. 

Sweet Adelyn will join two new families April 21st.  We are sending strength and love to our sweet Adelyn and her mommy and daddy as they enter this appointment.  Adelyn has been in a brace for several months.  We are praying for you and your sweet girl!  I mentioned they would share this day with two new families.  Katrina and her daughter Grace have their first appointment with Dr. Hammerberg this same day.  We are praying for your sweet Grace as you learn more about her treatment plan.  We are all here for you.  Another sweet family joining the Lucky Cast Club is Diana and her sweet boy Max.  Max is 9 months old and will get his first cast on April 21st.  We are sending his family all the love and support we have so they can make it through this emotionally draining day.  Max is going to do great and we know with the incredible family he has they will all adjust to this new life. 

I am going to finally quit my babbling with a funny story.  William has been telling us about the letter that is hurting him.  He loves scrabble Cheezits so I assumed he had a cheezit stashed in his cast for later.  I flossed with a panty hose and had no results. He has been insistant for several weeks the Letter hurt him but I kept assuring him there was no cheezits in his cast.  As Chad took him out of his cast and I picked him up I saw what he was going on about...a foam letter T was attached to his chest under the cast.  I was video taping the cast off process and as Chad and I went back and watched, at the end of about 1 minute 30 seconds of taping, William mentioned the letter coming off.  We didn't pay any attention to it and kept cutting.  I guess next time I will pay closer attention to what is hurting him.  Beware the Letters that lurk in the dark, they aren't all innocent! 

Sunday, April 3, 2011

Defining Moments

It has been several weeks since I felt the need to post.  I am not sure what led me to today's post or even where this post will go.  We are two weeks out from taking our red cast off and three weeks from our next trip to Chicago.  I have had days where the time can't get here soon enough and then more days where we are just fine where we are.  I can't say I am ready to start this process again for the 8th time.  It just doesn't really seem real.  I always thought that we would have a year or so in cast and then it would be all over and we would start on a brace.  Each cast, I kept thinking this is the one.  The weird thing is, I just don't feel that way anymore.  I don't think I have given up hope rather just learning to accept reality.  This is our life for now and our normal.  William doesn't know any different.  He is older and more resigned to this way of life.  The cast off at this point almost is more confusing than liberating.  It is his acceptance that has helped me to find my own. 

I have found in the last year and half that my priorities have changed.  In fact our families priorities have changed.  We have learned to rely less on the material aspects of our happiness and more on the moments that are happy.  This was a good thing for all of us when I lost my job.  I always felt that having a job defined who I was.  I was a career women, a wife and a mother.  With the loss of the career and a very competitive job market, it was time to downsize our lives and prepare for a long term career move to mother and wife.  We are still holding tight to our summer vacation, that will be our luxury.  We have cut out meals out, I avoid target like the plague and have found happiness in home rather than shopping.  I have made cards for my husbands birthday and anniversary, surprised them with cupcakes and cookies made at home and tried to spice up dinner with creative cooking on a budget.  In the end I have been able to see a world of wonder in the 3 people I shared a home with for so long. 

Self evaluation has been the key to the past few weeks of quiet reflection.  Anything worth having requires dedication.  My family, this club and raising awareness for Shriners Hospital & Cincinnati Childrens is worth the effort.  My friends traversing this winding road with us is worth dedication.  So although I am indifferent about our new cast, I am excited to see our friends when we get there.  Life is moving forward and it's time I stop living in the past.  I can't take away what we have been through and I need to truly accept what we have gained through the journey.  This doesn't define William, it enhances him, so it's time to stop allowing it to define my self worth and let it enhance what I do with my future.  We will soon be posting pictures with our friends of these little sweethearts who have emerged from 10-12 weeks in their protective shells.  I will try to stay in the moment and allow myself to rejoice the triumph of another cast down!  They are all defining moments and worth celebrating.  Bring on the Celebration for the casts new and old.  They are all bringing us one step further in our journey with no clear end.