Tuesday, October 25, 2011

Cast #5

Yesterday we went for cast #5. It is hard to believe we have been on this journey for over a year now. Parts of me are very bitter. Very bitter. Parts of me are sad and parts of me are just grateful that we have a course to follow and have amazing friends to support us. Here is the nitty gritty of it.

I knew as us moms just do that Kiya's curve wasn't any better. I tried to be positive but I knew. She looked GREAT for like 3 maybe even four days and then the shoulder drop returned and my heart sank just a little. My hope was for any correction no matter how small but such was not the case. Dr. H says we are basically the same as where we started so around 60 and that Kiya is bascially straight in cast. It is frustrating to us and to him. He even went and double checked her MRI to see if something was missed but nope all clear. So we plug along and keep on casting and praying that someday the correction we see initially will stay even just a little.

To make things even more frustrating we now have another issue to deal with. Two of the doctors heard a heart murmur yesterday. It was mentioned once before 2 casts ago and not last cast at all or by any other doctor. That said Kiya doesn't go to the doctor much so it is very possible that it has been missed. She is due for her 3 year check up at which time we will be seeking a referral for a pediatric cardiologist. We need to first do an EKG and then depending what that reveals do an echocardiogram.  Fun. NOT.

Kiya is also due for an important blood test. One I have been putting off but we need to do it. She HATES needles and having her blood drawn so not at all looking forward to this.

All that said, Kiya weighed in at 30.5lbs and 38.8 inches tall. My string bean is sporting a dark green cast and doing great. Yesterday was rough. She didn't come out of anesthesia as well as she did last time so she was CRABBY. But we pushed forward and were headed home by 12:30ish. She watched more episodes of Olivia than I care to think about but she survived the day. She ate a little and slept great. I am so amazed by her constant resilience. She is amazing.

We were fortunate to meet sweet Lauren and her parents yesterday. It was nice to talk with another family. It was weird to offer support and advice as they are still new to this journey and I am used to being the new kid on the block. It was really strange but I was glad I could offer advice, tips and support.

So there you have it. We survived. We didn't get any straighter but we didn't get any worse so I will take it and move on. It's what we do.

Wednesday, October 12, 2011

Let me get this straight.....


straight.

Websters definition: free from bends, curves, angles or irregularities.

My definition: Miracle.


When you've lived for over 2 years fighting Infantile Scoliosis, there are certain words you come to despise: wait and see. water. sand. vomit. casts. surgery. numbers. anesthesia. x-ray...the list does go on. There are other words, if you're a treatment patient of Chicago, you just as equally come to favor: Shriners. Gwen. Linda. Tom. Ruby. Hammerberg. Lucky Cast Club. Hope. Brace.

But there is a word you don't expect. A word so sacred and special, coveted and desired, you just don't speak of it. You don't whisper or even say it to yourself in the quiet spaces of prayer or solitude. You long for it and hope for it and pray for it, but you don't really know if it's ever a word that will become once again, a part of your every day vernacular.

And in the company of your beloved family of friends also fighting; also longing for their day in the sun, it's actually painful to say out loud or in their presence when you finally reach the day the word is spoken.

Straight.

shhhhhh....did you hear that? That was my gasp. That was my heart. That was my soul lifting in disbelief.

Today, 36 days after Jackson received his brace, we returned to Shriners Hospital in Chicago to find out how well his spine is holding without the protective armor of his cast. We had little anxiety or trepidation because, honestly, we've been pleased with the way he has looked each and every time he gets his "break". I'm always petrified to look each time, but I can't stop myself, and what I see always gives me relief.

Yet there is always that chance. You know the one. It taunts you and looms behind you in creepy dark corners and steals your thunder? Pops your balloon. Kills your buzz? Yes. That one. It tapped me on my shoulder today as I drove us to the hospital this morning but I managed to push it back and bid it farewell once we walked into the hospital.

Jackson was a champ...as always, and in typical Shriners fashion, the warm, loving welcoming of our friends and the spoils of toys, books, games, crayons and smiles made us feel at home. We visited Jackson's friend Tom who takes his pictures and got a sneak peek before we'd return to have our clinic consult with Dr. H.

I am glad I was solo today (Daddy couldn't be with us). I would have probably squeezed his arm or hand so tightly and drained it of its blood supply if he had been. I had to contain my disbelief and giddiness as to protect myself from maybe a twist of reality or mis-read on my part. But I know what I saw. And it was beautiful, but yet that was all I was willing to say to myself. Remember...shhhhhhh, the word we don't speak of.

And then Dr. H met up with us back in our room. He strode in like a gallant knight... with his sword of protection and mighty steed---Oh wait. That was just my thought after the news. He pulled up the x-ray, zeroed in on the picture and proceeded to compare it to the x-ray taken on November 4, 2009. There they were. Side by side. Ever so clearly and candidly facing us. With confidence and what appeared to be surprise, he said it. He said IT.

"It looks straight!"

He proceeded to have Jackson remove his gown and bend over so that he and his observant and loyal interns looking on could also see for themselves as he traced his finger down my son's spine. And he said it....AGAIN! Let me get this straight...you're uttering that which we don't speak of TWICE?!

"It's looking really straight..." I have no real recollection of what was said after that. He lost me at straight.

With solid and excellent news of minimal rotation, aligned vertebrae and not needing to return for an x-ray for another 4 months, I glided out the doors of that hospital. I am not certain my feet touched the ground. I am certain that my superhero himself, held me close, lifted me up, and gallantly threw out his cape behind us. We then flew together with the wind of change and the gratitude to God carrying us home.

Tuesday, September 27, 2011

Double Digits

We are approximately 2 weeks from reaching double digits in casting.  That's right cast #10 will await us October 17th.  I am feeling so many emotions as we approach this milestone.  We have many friends who have already entered the double digits and I can only assume they somehow felt some of these same things.  For us #10 means, 11 times under general anesthesia before his 3rd birthday.  William has also had major narcotics on 3 occasions for the side effects from the versed, he has had countless skin infections, he has felt pain more times then any parent can want for their child and he has slept on a plaster board for more of his life then most adults ever will.  On the flip side he has laughed, shared moments with new friends he would have never met otherwise, crawled, walked, swam in the ocean.  He has entered the OR 10 times and never been cut by a scalpel, had foreign material placed on his ribs or spine or spent an overnight stay in the hospital.  His blessing far outweigh the flip side of casting.  

Our friends and family are curious how much longer we have.  I have to be honest with you I don't have a good answer for you at this point.  William's x-rays still show significant abnormalities that need to be addressed before he will ever prosper in a brace.  I am going to put my bet on the fact that we are looking at another year maybe 18 months in cast.  I wish I had a crystal ball that could predict where and how this would all end but then again I am not sure I would have had the strength in the beginning I have now if I knew the journey was going to be this long.  All the studies so far address the most treatable curve (started casting under 50 & under 2 years old).  I have seen kiddos that meet both criteria and they are doing remarkable well.  I have also seen kids who meet one of the criteria attain their milestones and move to bracing.  William's curve started at 67 degrees and thankfully he was only 10 months old.  He had time on his side even though the numbers were not.  Although the literature put him in the category of unknown results with casting he still has a dog in this fight.  He has gained incomprehensible correction, his spine has stayed flexible through the entire process and we are blissfully still casting. 

My friend Kelly has always told me to write from my soul, it's raw and true and very relatable.  I can assure you this post is anything but from my soul.  I am feeling very numb as we enter number 10.  I have the shackles on person telling me you need to eternally grateful for everything you have. You have a living breathing child who is still fighting this damned curve in his spine with every minute.  He is not in imminent danger of leaving this world and he is under the best possible care.  The shackles off person is numb from the journey.  I am reaching and daring time to stand still in order to catch my breath.  I am creating projects to keep my mind from the racing it seems to do.  I am driving my friends and family nuts with this thought or that project in an effort to have control over something in this crazy journey.  If you have been placed on my project list I am sorry.  If you can bare with me I promise I will go back to status qua once we get through this next cast.  I will give you 10 weeks of normal before flipping out again.  When this roller coaster finally comes to a stop I will once again board the crazy train to the unknown as we spend the next 15 years monitoring his spine some more for any sign of movement that would mean he is once again regressing. 

Ongoing projects to keep my mind off casting include the following: Fundraisers for my nephews basketball team, cheerleaders at Bosse High School, Clean the flippen house so it can be appraised next week, write my letter to Robin's girls with my sister, finish the first LCC newsletter that will hopefully go out this Friday, complete homework for my Tuesday class, remember to call into my Tuesday class, finish the float for the lighthouse parade, start the float for the lighthouse parade, find a Britax seat for the new family from Evansville starting casting, work on web page for new business, work on business plan for new business, make contact with John Scoliosis this week, confirm the cabin for the LCC Mom's weekend, book the hotel for October 16th trip to Chicago, play with William so he isn't completely neglected, take the crap in the back of my van to Once Upon a Child, pick up the crap from Once Upon a child when they tell me the don't want it, organize PJ drive for the fall, email reminders to parent readers regarding bringing their own book, try to talk to principal about what I witnessed with kids being unkind to each other at Cody's school, purchase and install stuff in Chad's bathroom prior to the appraisal next week, pray the appraiser has a sense of humor, finish tutu's for the LCC girls and breath.  Sometimes it works and sometimes it doesn't but this is my coping mechanism for now.

Chad's niece Chloe posted "and when the night is cloudy, there is still a light that shines on me, shine on til tomorrow, let it be."  I am positive this wasn't meant for me, but when I listened to the song this morning it did give me some peace.  I can create all the mental chaos in an effort to distract my mind from spinning, but sometimes the simple answer is to just let it be.  Thanks Chloe! 

Monday, September 19, 2011

Learning and Growing

I received a friend request on facebook Friday from someone named John Scoliosis Isdell.  In my half sleep riddled mind I was thinking who would give their child the middle name Scoliosis, sick people.  I then clicked on his profile and realized he used the Scoliosis to get my attention.  It worked.  John and I are now friends on facebook.  As I perused John's profile I clicked on links which lead me to his web page: www.scoliosisinternational.org I don't know how John found me on facebook but I have to believe it was divine intervention.  John is a Scoliosis patient who was diagnosed at the age of 14 years old with a curve that progressed rapidly in a short time frame.  He is a survivor of rod surgery and has chosen to make his mission in life to improve the lives of those living with Scoliosis and raising awareness for the condition.  Already John and I are kindred souls.  As I continued to read further and click on more links, I found that John is in the process of creating a safe haven in Chicago for families enduring spinal surgery to recover in the comfort of a home he will call Scoliosis House.  WHAT AN AMAZING idea.  If you have been with the Lucky Cast Club since it's inception, you might remember the blog that was the catalyst to movement.  It was a long rant where I laid out my dream for us as patients living with Infantile Scoliosis. My biggest and most outlandish wish was for the Lucky Cast Club house for patients coming in for casting to have a home and haven to relax our night before OR.  Um John...you had me at hello, tear. 

After reading so much about John it was time to write my first Dear John letter.  I have reached out to John first and foremost to thank him for having the tenacity and courage to create something so amazing for families in Chicago as well as world wide.  I then offered to help him in whatever small way I can.  I shared a little about our Lucky Cast Club family and shared a few statistics with him regarding what our children are facing.  He replied and thanked me for sharing William's story and the Lucky Cast Club.  It is in the front of my mind to see if and how the LCC and Scoliosis International can join forces.  We know little about Juvenile Scoliosis and he knows little about Infantile Scoliosis, we have similar goals and platforms, and we both seem to be passionate about reaching others affected by the Demon Scoliosis.  I will keep you all apprised of where and how we can help each other.  In the meantime, please check out his web page. If you can donate to the Scoliosis House, please keep them in mind.  This is an amazing opportunity to have a truly tangible role in easing the pain families face when dealing with surgical intervention.  Today I thank who ever lead me John Scoliosis Isdell.  If we never have further correspondence, just knowing he had an idea and was able to see it through to reality has encouraged me to keep moving forward, learning and growing. 

Sincerely,
Catie ScoliosisSucks Diefenbaugh

Wednesday, September 14, 2011

Shine On!

I wanted to try to put into words what a wonderful weekend I had.  It has been hard to do justice to the memories I have locked in my heart.  I am going to try to see if I have the words to sum up the moments and memories that I now hold so dear. 

Friday I felt frantic to get out of town.  So many tasks to complete prior to leaving the solitude of my home.  Car needed brakes, William had his first day of school, Cody needed to be dropped off at school all of this was scheduled between 7:30-8:00.  Thanks to my husband, sister, & mom life was moving forward and I had to hang on for the ride that I would call Friday.  Car was picked up, William was picked up and now it was time to pack.  The car was loaded and it was time to head to the windy city.  My Aunt, Uncle and cousin Sarah were there to welcome us back to Oak Park.  It was nearly 10:30 when we traversed the cities late night traffic and finally landed feet first ready for sleep.  Saturday morning was over scheduled.  I decided rather then fight the schedule in my head I was just going to flow with the moments.  Our family made a beautiful breakfast and after my Uncle and mom took the kids to the park so I could shower and pack for the day ahead.  A treasure and treat for the kids was when we walked to a local yogurt shop for a frozen treat.  We live in the county and walking anywhere of interest would involve quite the hike and several very busy county roads.  The boys really enjoyed this new found freedom.  On the walk back to the house my beautiful friend Sarah called to say she and the girls were almost to Oak Park.  They arrived and shared lunch on the patio with my family.  I was smiling inside so bright at the thought of my daily phone friend sitting across the table from me with her beautiful girls.  If the day would have ended at that very moment, I believe the 12 hours of travel would have still been worth every minute.  Fortunately it was just the beginning of what was to be a night to remember. 

I know by now you are probably like get to the point of this post, hang in there it's building.  Sarah and I set course for Bolingbrook.  On the way I ran an I-pass toll and of course freaked out.  Fingers crossed my .80 toll won't turn into something huge.  We arrived in Bolingbrook at the Miller house for what was to be a celebration to remember.  Jackson Miller started casting a week prior to our Iron Will.  We have shared so many hospital moments and scared parent moments to recount.  The joy filled my heart when I was greeted by my fabulous Lucky Cast Club friends and their amazing family.  The Bouncy House in the front yard set the tone for the celebration of a milestone in the Miller's world.  Jackson faced Infantile Scoliosis and by God he set it straight.  They were celebrating the emBrace of their new lives cast free and with a fabulous new accessory.  I was fully prepared to celebrate the joy and camaraderie of THEIR moment. What I wasn't aware was this celebration was a catalyst for such hope for my own family. 

The Miller family could have created a party entirely centered on their joy, but that wouldn't have been what makes the Miller's the Millers.  They instead celebrated their beautiful family and all the families who are holding hands on this same journey.  The evening included a kid paradise of bouncy houses, pizza, & enough friends to keep kids enchanted for a lifetime.  They shared a slide show sharing their son's journey that included the soundtrack to our last two years, speeches of determination, tenacity in the face of adversity and a celebration of unlikely friendships formed from Infantile Scoliosis.  Hearts knit forever by the bond of kindred souls tossed into a melting pot free from discrimination we like to call the Lucky Cast Club.  The evening ended with me yearning for more.  More time with my beloved friends, more moments free from plaster and fiberglass in a hospital setting, more memories of these my beloved sisters.  If I could create a Utopia for our LCC families, it would mimic in sight, sounds and love the Cast off Blast Off of Jackson Miller. 

I would like to send a special thank you to the Adam, Chrissy, Natalee, Cameron, Jackson, Mom & Dad Sherman, Mom & Dad Miller, All the Sherman sisters, & Miller brother for making us feel so at home.  To my soul sisters Chrissy, Sarah, & Tracy oh heck I need to add Joe and Adam to this as well(You GO GIRLS) I love you all deeply! To Chrissy and Adam's friends who welcomed us with open arms and listened intently to our children's stories it was so kind.  And to all the fabulous donors who made contributions in Jackson's honor we pledged to do your generosity justice.  It is my hope that with donations made earlier and in Jackson's honor we will be able to share this feeling of home with all our LCC families through both a Mom's weekend and a Spring family outing.  You have all touched my life in ways you will never know. 

I pray we will always see ourselves in the same light we admire each other.  This is William's favorite song and I thought the perfect conclusion to our magical day.  Shine On my friends!

Monday, September 12, 2011

Cast Off Blast Off Party: Wish Lanterns to Heaven

emBRACe it!



It's a beautiful thing when your fears and doubts become moot. When the cloud of darkness that you convinced yourself is hanging over you, clears and you see that there really was clarity and light tentatively wrapping itself above you the whole time. When you swallow perspective and you take a breath and look back at the history of where you came from and how many beasts you slain and fires you walked through, suddenly, relief and a burdenless breath is your reality and you feel calm.



On September 7, Jackson was free. I say free with an elation and epiphany that continues to unfold before my eyes each day he is able to move more freely, touch his own skin and say, "that feels better!" or get into a tub of warm bath water whenever he desires. The list goes on... today I asked the boys, simply because I could..."do you want to go in the pool?" Do you know how long it's been since I could udder those words? Jack's reply, "...me too?!...yeah!"


Calm.

The simple things that for the last 22 months had not been so simple, I now understand are gifts and treasures and I will never take them for granted: he can puke and I won't have to wonder if it went down his cast. He can soil if it be and I will not have to recreate the tape job around the base of his cast in an hour process to try to salvage his shell. If it sprinkles? If it rains? Bring it.
Sand? Though I despise sandboxes, I shall not have to avoid them in fear. I can sign him up for swim lessons. I can get an hour of squishy hugs every day. EVERY DAY.


Joy.



The transition to brace life has been much less troublesome than I had worked up in my head. Despite the first couple of days when Jackson thought it was the status quo to remove the brace to go potty, there wasn't much of an issue. He has since learned that he CAN get up on the seat with his brace and will not get the brace wet. He has slept through the night since the first evening and has stopped wincing, "it hurts"...or "too tight"...when I adjust his straps and brace him up. I think I've even diminished the fear that I'm not putting the darn thing on correctly.



Relief.



The end all~be all of the emotional peek of brace life was marked by our Cast Off Blast Off party we threw for our Superhero on Saturday, September 10. I shall never be able to fully paint the picture of love and joy that wrapped itself around our home on that beautiful Saturday. Surrounded by both sets of his grandparents, siblings, cousins, aunts and uncles, family and peer friends, our son felt love. He felt happiness. He felt excitement and giddiness, gratitude and blessings....he felt free. Yes, he's three and cannot and will not be able to tell you these things himself, but as a parent observing this phenomenon...you just know. It was flowing through his soul. It was flowing through mine.


Gratitude.


I could spend much more time writing about all that took place that night, but no matter the choice words or antecdotes or visuals...it just wouldn't truly capture the magic...the miracle. That's what it was after all. The magic of being with my Lucky Cast Club soulmates NOT in the shared space of a hospital waiting room. The miracle of elating in the laughter of our beautiful cast friends frolicking around with smiles, sporting casts and brace with not a care in the world and no surgery looming in the next room. Beloved friends and loved ones, lots of tears of joy, reflection and empathy, singing, dancing, eating and drinking... celebrating. It was breathtaking.

Renewal.


More rewarding and breathtaking for Adam and I was the gift we were able to give back to our Lucky Cast Club family that night. At the close of our celebration, we gathered in the calm of the moonlit sky to share our love with our newfound family. To honor each cast friend in their own journey toward healing, correction and courage, we lit 23 wish lanterns and sent them to the heavens with the song, My Wish, by Rascal Flatts, serenading us. God whispered to me in that moment, I swear. He touched my heart or maybe he winked at me, I'm not too sure, but somehow I knew....I felt...I grasped and savored and embraced...that it is all going to be okay.


































































































































Friday, September 9, 2011

Letting go

My name is Cathy and I am a control freak. Having a child in a cast makes this condition much much worse.

We are on vacation so the goal is to have fun. Today we went to the children's museum here where we are and I had to face two fears for a kid in a cast. Water and sand. Yup. good times.

I want nothing more than for Kiya to be a kid and have fun. Sure she isn't even 3 yet and won't remember the things we did today but it is important to have the memories and the pictures/video. I love watching her face light up in pure joy.

Ok back to my point. We were with some friends and their kids today and all of the kids wanted to play with sand and water. I had to make a decision. Should I be the over protective parent and tell my almost 3 year old no you can't do this because of your cast or let go and see what happens? This is tough for me. I don't want sand in her cast. I don't want her to get soaked.

I took a deep breath and watched her dig into the sand. I kept telling myself to breath. We did get sand in her hair which is a whole other issue and a little down the front of her cast but that was easily removed with a baby wipe. Serious incident avoided.

Next up water. She saw the room and just screamed with pure delight. She demanded that she get to play in it and in her words "make a big splash". I told her to wait while I scoped it out. Truth be told I had read all about the room online the night before. I was terrified since they specifically said it might be a good idea to bring a change of clothes and a towel. I looked at the under 4 area and nearly had a panic attack. Every child in that area was soaking wet.  I quickly moved on to the other area. I looked. I scrutinized. I looked again. I checked out every kid. I looked for the aprons. I said ok. We might be able to do this.

I pulled out her waterproof bib. We put one of the museums aprons on top of that and let her have at it. She had the most fun I have ever seen her have. She screeched in delight she wanted more. She would have stayed there all night if we let her. And while I pulled her away from things that might splash too much, I let go. By the end I didn't pull her away from anything and you know what she left with slightly/barely wet shoes and arms. That was it. Her clothes were completely dry and as such so was her cast.

I let go. I let my big girl run and have fun like every other kid in the place. I let her be a normal kid. I didn't let that darn cast tell her no. I refused. We are on vacation. We are one month away from cast cut off and I said screw it. Smiles and squeals of delight were priceless. I wouldn't have changed a thing.

Letting go isn't easy for me but I did it and I would do it again. Life is too short and Kiya is only this fabulous age once. Her cast has never slowed her down and I wasn't going to let it stand in the way today. I will never forget today. It was perfect. Kiya had a blast and I let go and let her be a "normal" kid who just happens to have a pink cast.

Wednesday, September 7, 2011

New Adventures Abound, Time to emBrace It!


Today is a very special day.  My heart is briming over with joy as our beautiful friend Jackson Miller casts off for the last time and emBraces his new world cast free.  It is finally time for our very own Super Hero to spread his beautiful wings and start a new adventure.  Jackson started his casting journey nearly two years ago.  He is such a remarkable spirit and has an amazing family who has shown us all grace and determination in the face of adversity.  The cast never defined his world or his abilities, rather it enhanced the beauty of his inner soul.  Jackson Miller fought Infantile Scoliosis and set it STRAIGHT! Way to grow Miller family!  We are sharing so much love and unabashed JOY with you today. 

"It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power."

-Alan Cohen
Super Hero Jackson at the beginning of his adventure!
Super Hero Jack helping Grandma Remove her LCC Bracelet today at Cast Off!













Thursday, September 1, 2011

There is no COMPROMISE in your childs care

As our group has spread out to different centers you wonder how the care would differ from center to center.  The casts are all applied very similar, taped the best they can, & the kids are all given similar reports.  We are spread out from Chicago, Cincinnati, Greenville, Salt Lake City, Kansas City, & our newest friends are in Halifax & the UK.  At some centers our kids have wonderful advocates who are there for the parents as well as the child.  At other centers you go with the flow and hope to not have to confront any hiccups in your child's care.  We have some of the greatest minds in the country in regards to Infantile Scoliosis caring for our children's spines.  Who is advocating for their spirits? 

A lesson I have learned early on in William's care is there is no better advocate for William then Chad and I.  This is one aspect of his care that isn't open for compromise.  I have been told by some that we are very lucky to be at a Shriner's hospital and I feel this is absolutely true.  They have some of the greatest minds and technology at their disposal and the majority of the staff is what I would consider world renowned.  Gwen loves each of her babies with all her might.  She is a fierce momma lion when she thinks something is not right with their casts.  Linda is a constant level of support.  She is the wipe your tears kind of mother figure who keeps us moving through the months and years of care.  Tom always there with a smile and kind word when your child visits radiology.  Dr. Bonisara has always been our friend in anesthesiology who would just assume carry William to the OR as make him ride on his bed.  Ruby is the crazy eight in the pre-op with her happy juice and silly hand puppets.  There is the sweetest PACU nurse who never forgets a face or a set of chompers who for the last 5 casts since being bit by William as he woke up always says there's my little biter.  There are countless other faces and names to go with stories of our journey at Shriner's.  When something goes awry in the process it is hard at times to want to stand up for your child because everyone is so wonderful. 

I want to set something straight.  There are those out there who say you shouldn't complain because everyone at Shriner's Hospital is a volunteer.  OK so let's address that for a moment.  Shriner's is a no fee hospital.  Up until 2011 they relied solely on donations to keep their centers running.  In 2011 they made the switch to an insurance only facility.  This means they bill insurance for your child's procedure but will not balance bill the family for cost not covered under your plan.  It was a big move that has caused some of the changes we have seen at our center.  The staff at Shriner's and the staff doctors are paid employees of the center.  The Hospital is a wonderful place and I firmly believe we should be spreading the love they are giving and raising as much money as possible for our centers.  It however doesn't mean I shouldn't advocate for my child when I find something that isn't in line with how I feel his treatment should be handled.   

So what is the answer?  I pose this as a real question to all our LCC families irregardless of what center you are using.  If we see something that is not in the best interest of our child should we speak up?  Who should we approach and how should we approach it?  What are the important things to advocate and what would be considered petty?  I know this seems such an odd post, but it in the here and now.  I would rather we as a group come up with a game plan so future families will not have to tackle this obstacle.  Love to all! 

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 young...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. 

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. 
       
      

Sunday, July 10, 2011

Cast free and mixed emotions

We cut off cast number 3 today. While it was cast 3 in reality it was more like cast two since we had to take such a long break between cast 1 and 2. But regardless the blue cast is now in the garbage.

Sweet Kiya, aka my string bean, is itchy, bruised and slightly off balance but is looking straighter. I am so excited for her to be able to enjoy summer toddler fun minus the cast for one week anyway. She will get to run in the sprinklers with her friends and take baths and enjoy.

I love the squishy hugs and the pure joy that encompassed her once we got the cast off. She was so mad when we were trying to cut it off and once it was off you could just see her face light up in pure joy.

This week of free is always a little strange for me. I try to enjoy all the hugs and fun and yet I watch and wait to see if/when her back will bounce back. I pray that it doesn't but we just don't know. That is the worst. She looks so straight right now. So straight, tall and skinny.

So we head to Shriner's on the 19th for supposedly a pink cast. She keeps saying she wants a pink one. She said that last time and we came home with blue.So we shall see.

Kiya truly amazes me. Nothing stops her. No sooner than we cut off her cast did she stand up and try to awkwardly walk away. She was a little off balance. After her bath she was back to running. She is nothing short of an inspiration. She is 2 1/2 and has a beautiful outlook on life. I love her goofiness, her stubbornness and her dare devil spirit. All of these traits are serving her well on this journey we are on. This kid has taught me so much about life and I am truly honored that I am her mom. I am so very blessed in so many ways.

Wednesday, July 6, 2011

The Amazing Iron Will

Names have been a thing we thought about for years.  With a last name like Diefenbaugh, we knew our kids would need strong names with short spellings or they may never leave Kindergarten.  As we were choosing for the boys, it was important to keep family roots at the heart of what we chose.  My Father was James Dennis, his father James Heinz, hence Cody James.  For William it was even simpler: a girl would be Elizabeth Emma after our beloved aunts who had passed and if he was a boy William Jack after Chad's father, grandfather, great grandfather & Jack from his beloved step father who passed away shortly after we were married.  When our beautiful little man arrived in the big world I would have never dreamed how the meaning of his name would actually fit so beautifully with his personality. 

William comes from the German Will or Desire and Helm meaning helmet & protection.  I can't think of a more appropriate name for our little brave warrior.  His nickname Iron Will goes back pre-kids.  Chad and I were stationed in Norfolk Virginia shortly after we were married.  We lived in the Navy lodge while Chad was in school.  With a very small space and extremely cold temps in the winter we watched a ton of movies.  We were big fans of some Disney movies the first: Yellow Dog the Journey home which is where we were determined to get our beloved Yellow Lab Hunter once we were settled in a permanent home and the second and favorite was a movie called Iron Will.  In 1917, Will Stoneman's  father is killed in a mushing accident leaving Will to care for his family. Needing money for college and to save the family farm in South Dakota, Will decides to travel to Winnipeg, Manitoba to take part in a dog-sled race from Winnipeg to Saint Paul, Minnesota. The young man prepares both physically and mentally for the harsh weather and terrain throughout the race. During the race, Will becomes popular with the newspaper media as reporter Harry Kingsley tells about Will's strong courage in what he must do. Will beats all odds and through integrity and spirit wins the race. 

When William was diagnosed with Infantile Scoliosis, all I could think was my sweet Iron Will, so young to face so much.  My feelings of poor Will have since changed to complete awe and admiration.  He is no longer the little helpless baby, rather the true spirit of his nickname, Iron Will.  He has an amazing comprehension of what he is going through and an incredible spirit.  I am so proud of my little Wilhelm.  I am blessed to have been given the honor to spend my life with such amazing boys and to learn from our little spitfire.  He gives me hope and strength when it is somehow diminished.  He is my Amazing Iron Will.  Looking forward to spending a week in a place away from reality, a place of peace, somewhere only we know. 



Tuesday, July 5, 2011

Frustration and heartbreak

I knew about how summer and casting were like oil and water....they didn't mix well! I was going to be proactive about this and try to not prohibit Massimo from missing out on summer fun... Including water activities. My mother-in-law made a vinyl water resistant smock for Massi that had Velcro at the crotch and in the back. So we had him in a swim diaper, swimming trunks, a swim shirt, and the smock. He was able to go in a sprinkler and not get the cast wet! I was so happy that he wouldn't miss out on all the water fun all summer.
This weekend we went to my sister's camper and they had a 18 inch pool. We put all the items on him and as soon as my husband got him there, he slipped and fell face first into the water! My husband picked him up and we knew the cast was wet! We went back and try to dry him off. massi ended up with such chaffing from the water getting the cast wet and dripping down to the bottom of the cast.He woke up in the middle of the night screaming in pain.... I felt awful!!!
The next day my husband decided to ensure he would stay dry. He put a garbage bag over his top half and tucked it in at the bottom of the cast. He then put one on from the bottom, cut room for his legs and taped the bags together! Then put all the addition things I mentioned above on! I felt so frustrated and sad! I have to resort to garbage bags so my son can be in the water! This wasn't fair! At that moment I hated scoliosis and the cast!!!! I couldn't relax because I was a nervous wreck the whole time worrying he would fall in and our garbage bag idea failed. As I saw all the other kids freely frolicking in the water,I became resentful and depressed! I cried later that night thinking about how much more am I going to be able to handle with Massi and this summer!My aunt hugged me and said to just think about how close he is to being straight and how well casting has worked for him. She reminded me that he won't be like this forever. I started to feel a little better and just looked at my Massi! He always has the best disposition and no one would think he was going through all the things he is right now! He is my motivation...my strength....my reason for having faith in casting. Anytime we mention his cast, he proudly lifts up his shirt and says, "cast"! it is as if he knows it is helping and he proudly shows everyone!

Wednesday, June 29, 2011

Hope

Hope isn't something I felt since Massimo had been diagnosed with Scoliosis. It all started with the Dr. at Children's telling me his curve was at 43 degrees and we should "start thinking" about treatment! When he showed me Massimo's xray and I saw the curve, I became hopeless. He told us to come back in 6 months and see where he was then.
I knew this wasn't right. I went on the Internet and found out about casting as an option...I starting having a glimmer of hope for my boy.
After our appointment at Shriner's with Dr. Sturm, I started to get a tiny more hopeful but still had my doubts of whether or not this would make Massimo's spine straight. After Massimo's 1st cast, we were down from 43 to 32! Hope started to grow in my heart. We had so much support and prayers from our family and friends! This also gave me hope. After Massi's second cast, he developed a rash and a cough. He had to wait 2 months before getting cast #3....the hope started to diminish. Finally, He was casted for cast #3 and had improved to 25 degrees. Massimo recently received his 4th cast in May and he was down to 11 degrees!!! I know once you get to 10 or below, you may be closer to being cast free!!! Hope began to rise again!  We will find out his numbers from cast #4 on aug. 9 which will mark Massi's one year anniversary of being casted.
BUT, what has heightened my hope is a little boy named Jackson Miller!!! He has been casted for 19 months and has reached the dream that all of us moms want to achieve for our babies.....the end of casting.....a straight spine!! Chrissy, his mom has always been a pillar of strength for me through our journey with casting. I am beyond happy for her and Jackson! This huge milestone has raised my hope to where I see the end for Massi and casting! I dream of the day we hear,"This is his last cast" My heart is filled with hope that Jackson will someday speak about his journey with Scoliosis and encourage other parents and kids to go with the casting option. Of course I envision this with Jackson wearing a Superman shirt :)!! Thank you Jackson for giving me more hope than I have ever had for Massimo!                                                                     

Friday, June 24, 2011

Letter to a Superhero










Dear Jackson,

Today I write to you with such pride and joy. Today I celebrate the amazing little person you are. Actually, there is nothing little about you. You have a huge heart; you love all of life and you touch the souls of those who come into your presence. You have a huge spirit; you ignite some kind of brilliance when you're in the room. Your energy, charisma and spark bedazzle me....everyone. You have a larger- than -life handle on all of the challenges that God has gifted you with and have done so with a grace and poise so large, I often question that you are only a small child.

You are a teacher. Through the last 19 months...half of your life, you have taught Mommy, Daddy, sissy and Bubba...all who have witnessed and pulled for you along this battle, what it means to have courage. You have shown us what it means to be brave. You have exemplified the human spirit and surpassed expectations. You have given us a new window through which to view life. You have changed how we see pain, struggle, disappointment and difficult times. Because of your tenacity and superior capacity to accept what is and experience life as God has planned for you, we are better people. We aspire to be like you, my brave one.

Yesterday was a miraculous day. It was a gift. It was an answered prayer...but you knew that, didn't you. In the bliss of the bath the night before, in the high energized laughter and alertness with which you entered your cast day...#9...in the calm and serene presence of your being through the waiting and the chaos, you knew. You were telling me through your joy, "Today is the day!", and I was apprehensively listening; afraid of lifting my spirits to the good news of the day, mindful of what the doctor could deliver in his post-op report, giddy with anticipation to hear what we wanted to hear and were afraid to let ourselves embrace, I was listening. You knew.

You feel pain and soreness and fatigue today from what is the total of all sums: all of the surgeries, the pokes and prods, the early rising mornings and the restless post-cast nights. What you feel today is the symbolism of what Daddy and I have felt for you since your diagnosis in September of 2009: a guttural punch lasting far too long, taking our breath away and leaving us paralyzed with fear and sadness. I watch you struggle today; the way you can hardly move with ease...the moans you made as you tried to find comfort in your sleep last nite, the inability to maneuver and manipulate the way you did two days ago...your tears as you ache and express how your cast is hurting you. These struggles...these post cast-day blues, of which you've never endured before in all of the past days( and I,m shocked and amazed you haven't), I think are a message to us. It is as if God is giving us this pain and frustration to remind us of what we are grateful for. That after this 12 week road ahead, there will be no longer, these kinds of days, my sweet warrior. Today is a gift and the days after....for they will serve to give us perspective and fortitude. They will give us empathy and compassion for our friends who will still endure. They will give us humility and hunger for the turn in the road that lies ahead. They will not last long and THAT is the miracle.

Congratulations my sweet boy! This is your last cast. I can't even catch my breath as I write it. I say it and yet it doesn't ring loud enough to express my elation and relief. I wonder if as you held my hand while we rested in your bed last nite...trying to find solace from the storm, did you hear me weep? Your quiet, sleeping breathing was my reprieve. Your tiny fingers wrapped around mine was a whisper to me that it was over. That THIS part, was over. Though you were clinging to me for safety and comfort, it was I, my brave boy, who was refusing to let go of you. I craved your still. I cried for your story. I celebrated in silence, nurtured by my own salty tears, that you have overcome the odds..the obstacles and the agony.


Your story is one I read with awe and inspiration, Jackson. As it unfolds and lights the way for others...as it becomes a life handbook for your family and friends to follow and learn from, I am filled. I am filled with hope. I am filled with a purpose to continue to support you and guide you, protect and provide for you, advocate and communicate for you and those who fight this battle of Infantile Scoliosis alongside of you. Though the noise of the battle is not over, the fight of the soldier is intact. Remember...you are a superhero. You have special abilities and powers of strength that conquer what evils lurk. You have an uncanny ability to fly and leap and soar where no others are able. You have the responsibility to pave the way and lift others from the shaky ground in an attempt to bring them to a much safer and rested valley. I cannot wait to watch you fly! ...and I will stand along the sunset, following your beautiful body with your cape bellowing behind you as you fade away into the horizon, and I will say with love, "That is my son."

I love you.

Mommy

Tuesday, June 21, 2011

Summer Dreaming

Ahhhh finally a week to enjoy my sweet boys all to myself.  This has been a first for our family this summer.  We have been blessed to have extras with us since the last week in May, but I have to say it is nice to finally have a little time to connect with my boys and settle into a summer routine.  I have learned so much about my boys in our time together, a first since either has joined our family.  Up until February 2011 I was a working mom and summers meant figuring out who was going to watch the boys, which activities they were going to have on which day and what was necessary to pack for their weeks enjoyment.  Although I enjoyed the friendships I had in working, I have to say staying with the boys is the most rewarding experience of my life.  I find myself enjoying the moments that I used to take for granted.  Something as simple as playdoh or drawing at the kitchen table to me is a heavenly event.  Another wonderful moment of our new lives has been family dinners.  Family dinners used to be a Sunday evening event at my sisters house.  I now host family dinners at least once a week if not more and have had the pleasure to share these with both sides of our family.  We are all finding such amazing joy in our family!  Last night after dinner we went with my sister in law and gorgeous niece and nephew to the park to feed the ducks.  Another cherished moment.  I am learning to look at life with a new reflection.  Gone are the dreams of the material things that brought no value to our lives. 
          Yesterday my beautiful friend Chrissy posted a heartwarming blog about their journey thus far and the joy of family and emotions that were churned by their first family trip to the beach.  They were one of many Lucky Cast Club families who found renewal in the sand in the last couple of weeks.  The photos and Ah Ha moments that were found at the oceans edge were nothing short of miraculous.  A sense of nurture, joy and once again apprehension seemed to be the theme of so many stories.  We are two weeks and two days from our departure to the healing edge of the ocean.  I am fighting tears thinking of what Crescent Beach has been to our family.  It was the beach my husband and I adopted long before our children were in our lives and the first beach we took Cody to as a baby.  It seems only fitting it provide hope and healing for a very tired family.  We are traveling with 13 other family members and know the week will be filled with craziness and sheer joy as we traverse a home with 17 people and 2 bathrooms.  Thank goodness there are a ton of boys who can pee in the sand! With all that said I wouldn't dream of having this vacation be anything less then the vibrant atmosphere it is guaranteed to be.  With all the noise and constant laughter there is no way I will have time to dwell on cast #9 that awaits us in Chicago on our return.  A little happy noise is only adding to my summer dreams! 

I am going to leave you with a song.  Please be sure to read Chrissy's post on our blog.  It was dated yesterday and is sure to warm your heart! 

Monday, June 20, 2011

WAVES of emotion....



Blessings...gratitude...awe....miracles...


These are the words that come to mind as I reflect on the family vacation we returned from a few days ago. For the first time ever, my children experienced the beach...the gulf of Mexico...

We spent a week in Ft. Myers at a condo I used to frequent with my own family as a child. It was spectacular.

But the pinacle moment, or rather, moments, was watching my children limitlessly and passionately run across the vast white sands of the beach toward the breaking waves. It is a moment I will take with me to the grave. It touched my soul.

The giggles and frolick with which they ran and played tag and enjoyed such freedom with, was more than I could take the first night. I cried with gratitude. I cried for our superhero....who after a year and a half of being restricted with timelines of swimming and no swimming, no sand, no baths, etc., was able to spread his wings and fly...toward the heavens and pink glow of the sunset....toward his toddler joy of playing in sand, wading in the tide pools and dipping his beautiful self into the crashing waves. This is what the wait was for. This is what the sacrifice was unleashing... this one week of bliss for our boy. I know this now.


We are three days away from our 9th journey to Shriners. We prepare mentally and emotionally with hopes of the news that our sweet baby might be on his last cast. We step into our own crashing waves: waves of emotions that come with letting go of the cast-off time, of the joy of touching him skin to skin the way only a parent needs and craves...of sweetly watching him sleep curled into a ball in such a way only a castfree body can....it is painful yet again.


But behind the pain, there is such radiant hope and light that illuminates this darkness. We have a chance approaching...our hearts are near a song that sings of burying the days of casts and welcoming the new chapter of his story; the story of Infantile Scoliosis. His story. It is a story God created and wrote for our son, and one we accept with waves of alternating gratitude and sadness.


This morning at breakfast, I asked Jackson if he knew what Thursday was: "We go to the hospital for your new cast," I said. "Yaaay!" was his response. With excitement and smiles he asked me if they have the color orange.


This child amazes me.






Thursday, June 9, 2011

A night of fellowship and giving!
























Escape Salon and our vendors raised close to $400.00 to benefit the Lucky Cast Club!  It was an incredible night with amazing friends and family.  I can't tell you how much this night meant to me and will mean to the families we can now reach out to.  There are great needs for our group and limited funds, every penny will be stretched to reach the goals of our group.  The money raised with this event and the Chicago event will be used to fund ongoing outreach and projects.  I am purchasing two new DVD players for Cincinnati, additional parent packs for Kansas City Childrens Mercy, I would like to also work on DVD players and DVD's for Angelica to take with her and Cadence to Greenville and well as Parent Packs.  We are going to plan a Mom's Weekend Retreat for ALL Lucky Cast Club families this fall.  I am committed to continuing to raise funds for other projects...I want to make support/prayer blankets for members, eventually manufacture the shower vests for members, get the carseats for casters up and going and work on so many other projects the members have mentioned.  This my friends is an amazing start and we have enough to keep us working into next year and welcoming the new families as they come!  This club was created to keep moving long after our kids have moved forward and I know it will.  LOVE TO ALL WHO HELPED make this evening happen.  You are the tried and true and beloved friends I know you to be. 


Tuesday, May 31, 2011

The Long Road

Summer is heating up and we are settling in to the long road in casting called summer.  We celebrated the Memorial Day weekend with family and friends starting with my niece Emily and her best friend Keaghan's graduation party at the Holland's home Saturday evening.  Our beautiful friends opened their home to both families.  It was a fabulous evening of friendship and celebration of the milestone for both these fabulous kids.  High School here they come.  The Hollands have a fantastic backyard complete with a wonderful pool.  The older kids were told no swimming until William went home and we originally tried to keep William occupied in the house.  Upon reflection, I decided this was not fair to the older kids and it was time to level with William about some realities in his little life.  The kids all began to swim and William wanted to see what was outside that he must be missing.  I opted to level with William....William the kids are swimming in a pool.  You can't get in the pool because of your cast, if you want to put your feet in the water and watch the kids I will take you out there.  He said yes and splashed his feet in the water for close to 45 minutes.  He came home happy and tired.  He loved his version of swimming.  His Ma Holland told him when he gets his cast off in July he can come swim in the water.  He was content with this. 
         The option to level with my two year old at first seemed scary, but William amazes me in his understanding of his life.  This is a long road with many unknowns, knowing I can talk to him and he finally understands is such a milestone.  Amen to the tiny miracles. 
         The club is taking huge steps and we have so many goals in our future.  The event hosted in Chicago by the Giunta family was a wonderful step toward achieving some of our immediate goals.  Next wish for the club will be the Mom's weekend.  I am hoping to combine the donations from the Chicago event and the donations from the Upcoming Ladies Night at Escape Salon to coordinate a late summer/early fall Mom's weekend for all club families.  It is important to embrace the camaraderie of others living the same life and recharge the batteries for these brave moms.  It will be a great weekend to continue to plan our next moves for this growing group. 
       I am working with Chrissy Miller and her family to expand our impact to help others with needs beyond Infantile Scoliosis.  Chrissy recently made mention she felt a call to help those in Joplin, MO.  I also had felt a calling to give.  With the help of her family, we are working to organize a Boxes of Hope campaign to allow the Lucky Cast Club to touch other families in need.  We will keep you posted on the efforts of our group to fill the Boxes with as much hope in the form of goods for families who are facing insurmountable loss. 

To leave you with a quote....
No man stands as straight as when he stoops to help a child
Knights of Pythagoras