Thursday, August 25, 2011

BRACE Yourself....

Today is August 25th. In 13 days, our superhero will shed his shell for the last time. We will remove it as a family in the morning with the same joy and exuberance of the last 9. In that celebration, we will then drive to the "brace shop" to get Jackson's very first brace. WOW. My stomach just did a flip flop. Following the fitting, we will venture off to Shriners to meet with his team to get yet another x-ray and learn about our new life...the brace.

I have been contemplating this for quite some time...accepting it...rejoicing in it...sharing gratitude with God in little one-on-one conversations in the quiet whispers of the night when I have time to think and just be still. I have been planning since day one of our great news, a glorious party to celebrate our child's obstacles overcome. I have been on a high...I think.

It has come to my attention over this past week that I'm...well...scared to death. I have been spiraling backward from joy to absolute and utter panic...anxiety...stress..fear. Have I been in denial all this time? Have I let the jubilation of our amazing news and this incredible miracle overshadow the realities? Because the realities are what fuel the fire of my fear. These are the realities:

I have no idea what we're in for.
I have no prior experience with what to do with a brace.
I do not know if Jackson will embrace his new shell with the same courage and gusto he braved his cast with. He was so unaware of what was normal that he didn't fight it.
Will he fight it?
If he fights it, how will we teach our beautiful baby that this is the new norm?
Will he be uncomfortable?
The cast had a window for which his little belly could peek out for space and comfort. The brace does not allow such luxury.
He is old enough to want to take it off and know that we can. We didn't have those battles with a cast because that was never an option.
The brace is not an absolute, concrete, 100% end to scoliosis.
He may regress.
He may have to return to cast life.
It will ruin us as parents if he has to return to cast life.
How will I ever know, on a day in-day out basis, if this brace is holding his spine?
The timeline for waiting is brutal.
There is always fear and unknown and anxiety with scoliosis. CAST or BRACE.

To my baby, a cast is equated with love. He loves the attention he receives at Shriners. He loves seeing Papa in the waiting room when he arrives. He loves to pick his color. He loves that Mommy wakes him up in the dark and he gets to drive with Mommy and Daddy in the quiet, dark morning while Sissy and Cam are home with Nana. And honestly, I think he loves his cast.
It has protected him and been his support...his backbone, for the last 22 months..for over half of his life. It is what he knows. It is what he has come to accept as a part of him. He may not understand its purpose, but he understands the path that comes with it.

I have sunk to a place of sadness again that I haven't felt since many a cast ago. The hatred toward his condition and the sickness in my belly and maternal heart that cringe at the thought of my baby having to struggle and go through something that takes him away from just being the beautiful bright sparkle that he is. It has not changed him, I know, but it has changed me.

I am realizing that all this time, while embracing and rejoicing in the correction the 9 casts have given our son, I forgot that I won't have that gift of certainty and assurance with a brace. It was the casts, after all, that brought him here. It was the casts' ability to strengthen and hold his spine that gave us the number that gave us the "we can brace now". Suddenly I find myself with a renewed sense of gratitude and endearment toward the beasts that I had always thought took something from him, when all this time, they've been a blessing.

Perhaps I'm becoming a cynic and skeptic in a sudden moment of diminished hopes and faith. Or..maybe I'm just in a bad place after a bad day and should go drink a glass of wine.

I just know that our superhero's journey is far from over and the road ahead is long and winding with uncertainties. I'm hopeful that a lot of them will venture to turn out just right, but I know now that I cannot wear my blinders on and bask in my naive bliss any longer. It's coming. The next hill and swoosh of the rollercoaster and I have to...well...brace myself.

What money can't buy...

Wow I am a blogging fool this week.  I am not sure the last time I have blogged this much, but there are to many thoughts running around in my head to not get them out somewhere.  The Cast Mom's discussion this week has been full of activity.  The general consensus of the group is Scoliosis Sucks.  I know that doesn't sound like an incredibly profound thought but truly is the most honest emotion you can feel at times. 

I had a wonderful dream last night.  We won the Lottery.  It was such an amazing feeling to have financial independence.  So many things changed in our immediate future.  The daily strain of keeping up with the rat race was gone.  The only thing we had to keep up with was our own potential.  We started construction on our new home not to far from town that I would get tired of the daily drive, just far enough to feel the joy of the seclusion.  College funds were arranged for all our nieces and nephews and our family all lived in homes that were paid off.  No new cars for us, our old ones worked just fine.  The Lucky Cast Club was a fully funded non-profit and no need was to small or large for it's members.  Chicago Shriners had an endowment that would build a special casting unit for our little friends and Gwen and Linda were still the heart of that program.  As a little splurge of sorts, we purchased our dream summer home on Crescent Beach and spent June, July & August surrounded by the soothing of the shore.  Wait, that won't work, William will still be in his cast.  I woke up and realized there really is some things money can't buy...

I can completely relate to all the families who have dealt with the Scoliosis Sucks moments.  It sucks whether you are in cast or in a brace.  There is a constant state of worry if they are going to gain correction or if they are going to hold the correction in brace.  These families will worry until their kid's have finally reached the adult years.  Growth is a wonderful thing unless you have infantile scoliosis.  With Infantile Scoliosis growth is the catalyst to the curve.  You are going to have those moments my friends.  It is only natural.  What I find extraordinary is the compassion we each feel when we have these.  The Lucky Cast Club families are fabulous! 

We are closing this week with record numbers.  5 new casts, 2 new families in Chicago today, 2 brace checks, & 1 family adding another brace to their lives.  We have bound together to help each other through dark days, offered support to new families in search of answers, created moments our kids will all hopefully remember, & not allowed scoliosis to rob us of the joy our kids have to offer.  When I look at the families I have surrounded myself with, the simple ways they have brightened my days I have won the lottery after all.  The friend lottery. 

I promise no more posts this week! 

Tuesday, August 23, 2011

Listening to the Inner Angst.

I woke this morning with an unsettled feeling.  I initially thought maybe it was something simple the fact I left the laundry in the dryer overnight or the lack of breakfast food in the cupboard.  A fluff cycle and the discovery of frozen waffles in the back of the freezer solved both of those so I knew it was something else, but what?  Grocery shopping immediately following drop off, forgot the Italian bread crumbs and lost my price match Buy Low ad before reaching the check out.  What the hell is wrong with me today.  It took the car ride home to realize today is the day our friends the Morrison's head back to Salt Lake City.  This was what was weighing heavy on my heart. 
        I have talked about our friends many times before but I want to tell you why I love them so much.  Liz is my no nonsence keep it real girl.  She is not afraid to call me on my neurotic behavior or point out when I am being a total drama queen.  She is my go to girl for sarcasm and will lift my spirits with one of her what the heck were they thinking emails when someone else is doing any of the above.  Liz and Clay are incredible parents and are always looking at the joy in the moments rather then reaching for the moments of joy.  They travel from Napa California to Salt Lake City for their daughters treatment.  They advocate for Keira like no other and forge forward when faced with discouraging news.  With all this said I was reduced to a blubbering pile of crap after their last trip to Salt Lake City.  They were given news that their oldest daughter also has scoliosis and would need a brace.  It was caught early and they are taking action rather then waiting but in my mind it simply wasn't fair. 
      Yes, I know there is nothing fair in the Scoliosis world.  None of our kids have an easy road and yes there are other families who have multiple children dealing with health related issues.  The problem, this is my friend.  She is my rock and although I try with all my might to be the source of support for others I feel I am failing miserably with being her support.  I don't want Keira to have to go back into a cast in October and I certainly don't want Meg to have to start wearing the stinking brace and have scoliosis after she has seen her sister go through this process for the past years. 
       Today I am writing so you too can think of my friends.  Lift them up in your prayers, manifest positive energy their way and reflect on their journey.  Liz & Darrell were my friends when I felt lost, new and alone.  We were the "Out-CASTS" together and I want nothing but good things for their families.  If wishing & prayer alone could change an outcome they would be golden right now.  Liz if you are reading this, I need an attitude adjustment when you get home.  I am taking this blog thing and using it for my own benefit. 

Friday, August 19, 2011

I feel fall fast approaching

August is quickly coming to an end.  I know this because we are finally seeing a small break in the heat we called summer.  For us summer was a long heat spell with 2 weeks on freedom.  I am very glad it is coming to a close.  Someday I will once again relish days at the pool and fun in the sun but for us Fall is my favorite time of the year. 
      William has been home with me since February of this year.  We have gotten into the groove of daily routines and relished our time together.  I have also noticed I am completely reliant on my little mascot.  I actually feel lost when he is not with me.  William also enjoys time with Mommy but I have started to realize he misses interaction with friends.  Today we toured a local church that offers a Fun Friday program for children William's age.  He fell in love with the classroom, toys & teacher.  Starting the first Friday in September he will have a new fun place to visit from 8-12:30.  He gets to carry a lunchbox and play with other children.  He is going to love it!  Now what about me? 
       Thanks to a fabulous friend of mine I am going to embark on some soul searching time.  It is time to focus on what is truly important.  I need to put some of my time and talent together in a way that will benefit my family financially and not just emotionally.  I want to thank my friend for taking the time to guide me to the search for self.  August 30th I will start a new adventure and I know in time I am going to rediscover me, my true authentic self. 
       I want to take a minute to focus on all the new families who have joined the Lucky Cast Club.  You are not alone on this journey and truly will benefit from the love and advocacy of those who are walking with you.  The founding families are going to take some time to focus on where we are heading as a group and make plans for the fall that will carry us into the coming years.  Time to re-group my friends and allow this family to grow.
       A very dear friend of mine,  Christina Duby, just welcomed a precious baby girl to their family.  Her little guy Drue is 2 days older than William and was casted in St. Louis one week after William's first cast.  He has been blessed to be holding in brace since the end of his second cast.  Welcome Kyleigh Elizabeth Duby.  We are so excited for the Duby family!  Onwards and Upwards my friends.  Wishes for a fabulous Friday and all things fall in the months to come!

Friday, August 12, 2011

A link between Infantile Scoliosis and sudden onset bi-polar in parents?

In the last two years I have experienced an number of sudden Highs and Lows in my emotional state.  As parents of children with Infantile Scoliosis we are constantly looking for a link between our child's scoliosis and other conditions that may be contributing factors.  I believe in the process I have found a trigger for another more serious condition I like to call parental sudden onset bi-polar.  Traditional bi-polar is caused by a chemical imbalance that causes severe highs and lows which alternate slowly and can last for an extended period of time in either a manic or depressive state if left unregulated.  The Parental Sudden onset Bi-Polar is also associated with severe highs and lows, but they are much more rapid and you may experience both the high and low all in the same day.  The best therapy for this condition is a good laugh, a good cry and an amazing group of friends to share one or all of these with. 
           In all seriousness it is not the journey you are on but the people who you are on the journey with that make so much of this bearable.  Whether you are starting with your first cast or on cast number 20 it is truly a lonely process if you are not surrounded by others traversing this same path.  This week I have had time to focus on the friends who make our journey less ordinary and more extraordinary.  The list of families has grown to the point where I wouldn't dare try to list the families who help on a daily basis for fear I would leave someone out, but you know who you all are.  One of my low points recently was looking at the images of our friends x-rays and realizing there is no way William is at the number we were given at our last casting.  The Neurotic mom in me pulled out my 4th graders compass and possessed me to attempt to measure the curve on my own.  Yes I am now an unemployed self trained Orthopedic Surgeon as well as stay at home mom and resident Lucky Cast Club lunatic.  It wasn't a proud moment, but did give me some clarity.  I am not sure whose xray they measured when they gave us William's number but I am very happy for that family and still happy for our family.  Although I am fairly positive William's number were not as good as originally thought, I believe he did see some marked correction from his last cast.  I also came to the conclusion the number doesn't matter.  This process is a big roulette wheel and until the ball lands on the stop we are going ahead as planned. 
       It is our job as Lucky Cast Club families to empathize, support, inspire and carry our friends in good times and bad.  I have seen such wonderful cases of this in my time in casting.  I have seen friends offer a hello, prayer or praise in times where life seems normal.  I have seen these families act like protective parents when we are faced with adversity or tyrants.  I have also seen many of us shed a tear of joy and sorrow when a fellow Lucky Cast Club family faces a new path or troubling diagnosis.  The amazing part of these families is the love they have for children that aren't their own.  When you can't walk they are there to carry you.  So maybe I am a little off with my new diagnosis but I am certain of the treatment...all it takes is a few good friends, a good cocktail, lots of love and the support of so many others.