Another one down...

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

 

Good Friday

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

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

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

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

April showers and new flowers.

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

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

William was straight coming out of his cast, completely straight. This hasn't happened since cast #1.  He is starting to regress, but I am still hopeful we are holding in the 20's.  PLEASE let us be in the 20's. 

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

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

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

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

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

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

 

Defining Moments

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

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

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

Pay it Forward

I am sitting listening to a CD made by a very special friend.  Thank you Chrissy!  Every song is uplifting and lightens the load of a tired mind.  You give me strengh my beautiful friend. 

I was waiting for inspiration this week to add to our blog.  My new career as Full time Mommy is the most rewarding and tiring job I have ever had.  Good is not an option when you are a stay at home mom, Great is the only score that counts.  Most days I have aspired to greatness and yet I am still learning so good has had its days as well.  Inspiration this week came over the weekend.  The Lucky Cast Club has a new family. 

I read a post on one of the support groups for Infantile Scoliosis.  I have been inactive from this group for some time, but something told me to read the posts this weekend.  I am so glad I did as it lead me to a new family and took me back to the roots of what inspired this group.  Our new little friend is 6 months old.  She was just recently diagnosed with Infantile Scoliosis.  Other than the diagnosis, her wonderful family is exactly where we all were not so long ago.  The beginning with all the unknowns is so scary.  Traversing the world of where to go, who to trust, what to ask, how bad is this is sometimes worse than being in the middle of this treatment choice.  With a lot of help from my beautiful friends we were able to share our experience, offer suggestions about our center and the experience we had with others.  Our new friends will hopefully be seeing our wonderful team at Chicago Shriners sooner rather than later. 

As I was corresponding with our new friend I was immediately returned to October 2009. It was my friends Cara, Amy, & Chrissy who extended the hand for me to hold and guided us to Chicago Shriners. It was with these friends and countless others who have joined our journey that the Lucky Cast Club was formed.  It is time for our arms to extend farther and for us to Pay it Forward in bigger ways!  

Let's dream big my friends.  We have fundraisers going on to raise the funds for projects that will need monetary considerations, but how many pay it forward moments out their won't cost us more than a stamp?  What if we could help new families simply by contacting the pediatricians in our area and sharing our story.  If we can meet new families at diagnosis, then we can save them the unkown portion of this ride.  We can remove the middle man so to speak of many kids journeys.  We know of wonderfully qualified centers in our areas who are capable, willing and ready to give these little ones hope.  I would bet we have at least two Orthopedic Surgeons in Chicago and Cincinnati who would be willing to help us with this campaign of hope. Let's not just support those on the journey, but lets extend our reach to help those who may not know hope exists.

The Lucky Cast Club Spring 2011

The Lucky Cast Club is on the fast track for our fun spring season.  Before we start on club updates I wanted to give you updates on some of our little friends.  Our friend Dylan is out of cast for the first time in years.  He actually got a full week out while he underwent some additional testing.  We would like to ask everyone to keep our sweet friend and his family in your thoughts and prayers as they return to casting next week.  Dylan and his family have given so much to so many families.  They are very special people and I want only the best for them! 

         Our sweet Kaity and her precious family are still having a delay with returning to cast.  Kaity and her family need prayers and support as well.  They are a very kind and supportive family to all our Lucky Cast Members and we only want the best for them.  Lets lift them up and get Kaity back in her protective armor as soon as it's in Gods plan. 

        We have so many exciting and fun opportunities for others to join our quest this spring season!  The Lucky Cast Club is still hosting their SPRING "Fun" Raiser/DVD drive.  If you can help, we are collecting new and used children's DVDs and portable DVD players for our casting centers.  Casting day is long and a favorite movie can make the difference in our little casters day.  Check out our fun flyer to see what your little casters love to watch....

Another great way to show your support is by sporting one of our Lucky Cast Club bracelets.  The Lucky Cast Club is offering the Luck of the Irish green and gold bands for a minimum donation of $1.  If you can and want to give more, please do.  The money raised from the bracelets goes towards supplies such as parent packs for our centers as well as purchasing portable DVD players.  Contact one of our Lucky Cast Club friends if you are interested in sporting the jazzy bands!   

A wonderful Lucky Cast Club mom, Chrissy, is working on a mentor program for new families joining the casting world.  As a new family enters the club they will be placed with a "shell" family to act as their protective covering for all things casting.  We have members from all over the US and Canada.  We are ready to give Chrissy all the support she needs as we go forward!  SO excited to help others! 

The Lucky Cast Club is also offering T-shirts for those who wish to show their support.  If you are a family member of a Lucky Cast friend, you can ask them to include your shirt in their order. T-shirts are white short sleeved T's with a full front logo and personalization underneath.  They have our web page on the back!   Shirts can all be personalized for each friends unique relationship.  Let us know if you are interested in having your own Lucky Cast T-shirt! 

Another new fundraiser I have embarked on is Thirty-one gifts.  Thirty-one gifts offers some adorable products including purses, thermal totes, carryall totes, blankets and stationary.  The products can all be customized with embroidery.  They make great additions to any ones home or can be given as gifts.  100% of the commission from these parties will go back to the Lucky Cast Club.  Since all of our Lucky Cast Friends are spread across the country, we are having online and catalog parties.  You can view the products or shop online at www.mythirtyone.com/catied

We are moving forward and charting new territory in all we do.  It is amazing to look back and see all we have accomplished as a family of friends.  We have centers now who are as dedicated to us as we are to them and new friends joining all the time.  We are eternally grateful to our friends who have helped us along the way.  The gift of time and talent has made this club what it is.  As we say in casting....Here we grow again Lucky Cast Club! 

Write what you know

I had my post for this week all planned.  I was going to write about what the club is doing and where we are going.  I promise I will still get to that, but I thought it was important to share where I am right now with other families dealing with this darned condition.  I wrote last week about losing my job.  This week my focus has been on finding myself and learning what I want to do long term.  As a condition of unemployment I have to actively search for employment.  As I have been starting my search, it hit me, I have many obstacles in my way.   So here goes my first cover letter....

Dear Sir or Madame,
         I am submitting my resume for the position of _________.  Upon researching your company I feel I would be an ideal candidate for your position.  I have 6 years experience as a Practice/Office manager for local dental practices.  My previous experience as Director of Operations for a fortune 500 company has taught me how to multi task to smoothly maintain the needs of my employer.  I always try to adapt to change in my environment and have learned tenacity when dealing with adverse situation.  I am proficient with Excel, Word, PowerPoint and Publisher as well as have an ease with verbal and written communications.  If given an opportunity I believe I could be an asset to your organization. 
        I feel I would be remiss if I didn't alert you to my unique situation. I am a wife and mother prior to having a career.  My youngest child has a unique condition known as Progressive Infantile Scoliosis.  He is currently undergoing treatment at Chicago Shriner's Hospital using a technique known as Serial De-rotational Casting.  William's treatment requires our family to travel every 10-12 weeks to Chicago for 2-3 days to have a new full torso cast applied.  In the past I have forgone week long vacations to minimize the impact of my absence on my company.  I will instead take vacation 1 or 2 days at a time as needed to have  a new cast applied.  I would appreciate further discussion once you have reviewed my skills. 

Sincerely,
Catherine T Diefenbaugh

OK so maybe the last part was unnecessary, but the reality is the conversation will have to take place at some point.  Why not put it out there in the beginning.  Save me time as well as them.  I am, at this moment, a whole package.  I don't have the luxury of finding something and having my family adapt to me, I have to adapt to my family.  I was extremely blessed that my former employer always supported me spending time with William.  I can't count on that being the same everywhere I look.  It forces me to look at my strengths.  I am compassionate towards families in need.  I have a passion for fundraising for local charities.  This has been a passion of mine passed on from my mom.  I am blessed to have a ready made opportunity with The Lucky Cast Club.  I love children...back to school is always on the table.  I can write and I love to write.  These are my strengths, now to look at whats available using my talents. 

I have researched grant writing.  The process is long and in depth.  The joy is I have time and a built in cause.  I am researching what it would take to get the Lucky Cast Club 501C3 certified so we can start seeking funds.  We are at the articles of incorporation faze of taking our club to the next level so we can start seeking funds.  We need a compassionate attorney willing to walk us through this process.  It is too much for any one individual to embark on, although I am giving it a fighting try.  The other option is to seek funds in the premise of setting up our charitable fund.  If we can raise $10,000 there are organizations who will incorporate us to their charitable trusts.  The other side to this coin, if we have that kind of funding we can pay to do this on our own.  I have great friends who are working this process with us, so together we can't lose. 

I started at looking for a job and ended with the LCC.  I think families faced with diversity learn quickly to adapt to their strengths.  I am sure I am not the first mother who has had to look for a job when they have obstacles in their way.  My friend Cathy was faced with a very similar situation and was able to overcome and achieve her goal.  What I am wanting to do is use what felt like such a blow as an opportunity.  I have something to offer and I just need to find an avenue to do so.  I have felt lost the past year and a half, now it is time to find myself.  In all the chaos that has been my life I feel more complete than I ever have.  I have a purpose and that is a blessing in itself. 

A huge Thank you to My wonderful husband who has agreed to love me no matter what I do.  To Chrissy, Sarah, Darrell, Liz & other friends who have kept me focused on the positive of all this.  I am anxious to get started on the next step in this journey towards discovery and I know I am blessed to have friends who are willing to participate.  The best use of your time is taking the time for you.