Saturday, February 26, 2011

Lost but not alone

This week ended on a different note.  I lost my job on Thursday afternoon.  I am still going through the feelings of inadequacy, loss, and failure.  I believe, as I was told, it was a financial decision but that doesn't stop the nagging what did you do wrong that plagues a weakened mind.  I am forced to find opportunity in this. 

I found myself frantically searching for a lifeline in all this.  I reached out to my family first and found unconditional love, next I shared with my best friend and found unconditional love, third I turned to the women & man who have been my lifeline through the darkened year and a half of my life and once again found unconditional love.  I can't say that I am surprised by some who gave me their support.  My family has always been here no matter what or how I do something, my best friend holy cow she has been through my teen years and adult years and always stood with me or carried me when I wasn't strong enough to stand, but it's the precious support group I have found in this group that really touched my soul.  These people have known me a year and half through some of the darkest hours of my life and love me unconditionally.  That speaks volumes to the group of families we have formed. 

The concept of how hard casting life is came up this week in one of our cast mom's discussions.  I think we may have frightened some of the new parents.  I hope this will help ease the heart of those who are new to this process.  Cast life has it's ups and downs.  To say it is a cake walk would be a lie.  The cast is heavy and has to change the way you do almost everything.  The little ones have a tough go of it for the first few casts.  They have to adapt to their new accessory, deal with grief of loss of normalcy in a way no toddler is equipped to cope, but finally their is always acceptance on their part.  It is the constant of this process that never changes.  They adapt, adjust and move on long before we as parents can.  Give them time, give yourself time, and be patient with the process.  As parents we adjust much slower.  We are not near as resilient.  We grieve the entire time our children are casting.  It hits like crashing waves many times, just when we regain our footing we are hit again.  The thing to keep in mind is you have joined a family of lifeguards always their to rescue you from the sea if treading water gets to much.  You will never have to fear you are talking to much about your little one, because that is what we are talking about too.  If you have apprehension about life, relationships, jobs, homes, do we.  We have all been where you are and you have found a sanctuary for sharing.  You may feel lost, but you will never feel alone.  You have found a second home. 

My Beautiful friends have been on "Catie Watch" since Thursday.  They are taking turns sending me messages of love and support so I don't get caught up in the self loathing faze of loss.  Chrissy sent me this song to add to the soundtrack of my life....Thanks to all my friends who are looking out for me!  I love you all!

Friday, February 18, 2011

What's Important?

I spent a large portion of this week engulfed in worry.  I worried about stupid things with little importance to the true meaning of what matters in life.  I had to take a step back yesterday when Cody got sick.  It was as if God was saying this is important.  This is what is worth worrying about.  It caused me to reflect over the last year of worry. 

When we get a life changing diagnosis of any kind you find so many things that distract from the moment.  You get wrapped in the diagnosis, engulfed in the treatment and then the what ifs take center stage.  Little issues tend to turn to mountains. A mention of something as small as a laundry that didn't get put away suddenly seems it will topple your very existence.  I can tell you from a year of reflection, this doesn't matter.  The mountain of laundry, the child who is bothering your child at school, the package you forgot to send on time none of it will make a difference in the long run.  You will eventually finish the laundry, instead of telling your child to ignore the kid at school tell them to talk to him, get to know him, and the stupid package, well it will eventually get mailed. It's the moments I missed in worrying about the things out of my control I will never regain and quite frankly, God told me to stop worrying about them. 

So starting today, I will live in the moment, relish the high points and learn from the moments of doubt.  Look towards the future and start each day with the best of intentions, I will try to remain fully present in the moments and look for the ones that will take my breath away.  This week in the mist of the fog, I had to reflect on the moments I almost missed.  Each morning started with my boys greeting the day, somewhat sleepy but fully in the present. At work I was able to share some great moments of laughter in what can be a stressful day, I got to care for my sick little guy and even lay down to nap with my two best friends, I got wonderful encouragement out of the blue from friends who know me and have seen my soul and from a friend who has known me a short time but has taken the time to know my family like no other.  I reconnected with a family who has always been our family and Chad and I shared a skype conversation with two of our best friends!  I had dinner with my family each night and shared each night with a man I love more than he will know.    The Lucky Cast Club added another new family to our family and I came across a mention of our blog on the Shriners Hospital for Children's page. I learned lessons of patience and saw moments of grace.  I indeed learned whats important.  I would love to know what you see when you reflect on the moments of grace this week.  It is hard to do sometimes but will make the mist disappear. 

Friday, February 11, 2011

Moving On...Moving Up...Moving Over

So it's my weekly Friday routine, breakfast with mom, light housekeeping, William's quiet time and mom's down time to work on Lucky Cast Club.  I have had this same routine for many months and enjoy the tranquility of it's simplicity.  Inspiration this week has come in many forms.  At home I have been inspired by my family.  The boys have kept me on my toes this week.  Monday started very early a.m. with William crying and coming to our bed and then peppering me with a rapid fire of requests at an unseemly time of the morning.  I responded with " Well this is a heck of a birthday morning." William then began sweetly repeating Happy Birthday Mommy, over and over.  This made up for any hard feelings I had towards the early hour.  Another sweet moment this week was when Chad made mention of reading my blog.  I know this sounds silly, but it really added wind to my sail.  My husband, lifelong partner and friend, read my blog without me directing him to.  It's once again the little things in life I am in awe of. 

So on to the Moving on, Moving up and Moving Over...The Lucky Cast Club has added many new friends in the past few weeks.  Tania and Courtney have joined us with their little ones newly in casts from Dr. Sturm in Cincinnati.  Our old friend and surgeon has touched two new little lives.  We are working with these families to enhance other families experience at the newest casting center to our group.  Parent Packs have been ordered and will be deliverred to their center along with pajamas to welcome all new casting families.  I have included a video produced by Cincinnati Children's Hospital to introduce casting to their community.  I hope you enjoy meeting Courtney and her family as much as we have.
We are expecting big things to come from Cincinnati and are all here to give support in any form needed. 

Another new friend has joined us from Greenville Shriners Hospital.  Amanda and her little one Logan found our group through our webpage.  Greenville Shriners has been one of the original casting centers and has had great success treating many families.  We are packing up PJ's to send to Amanda for her center as well.  A Big Lucky Cast Club Welcome to Amanda, her family, & the entire Greenville Shriners Casting community. 

With new families comes new zest.  It takes a dose of what are you doing to get the creative juices going again.  The Lucky Cast Club has reached one milestone through their winter PJ drive.  PJ's were sent to many casting centers with personalized tags sending love and encouragement to new families.  Well it's time again to spread the Fun and host our Spring "Fun" raiser for our casting centers.  We have found from watching friends the key to a calming pre-op routine is a portable dvd player and favorite dvd's.  William and Kiya both sat on their beds enjoying their favorites this past cast time while Gwen took BP's, temperatures, and pulse ox without to much fight out of these feisty two year olds.  Something so simple can bring so much calm...time to spread the love!  The Spring DVD drive is now underway.  All Lucky Cast Club members will be collecting new or used children's DVD's and Portable DVD players.  I am hoping through collections and even some great friends who are soliciting donations from local electronic retailers(Thank you Tracy) we will be able to provide each center with at least 2  DVD players(hopefully more) and books of childrens dvds to help pass the time. 

Many of our little friends have been sitting in limbo and need a boost with prayer to help them move over obstacles and illness.  The winter flu and other illness has kept many of our friends out of cast for weeks and for others months.  Please offer these friends up in prayer.  I have prayed for some time that they get back in their protective coatings, but recently thanks to a good friend have realized I am praying selfishly.  God has his plan for each of our children so if they have been out then it has been his plan for them to be so.  I am now praying to see the beauty in each day they are out, embrace the time they have been given to live simply, and not fear the return to what must be. 

Happy Valentine's Day
Lucky Cast Club!

Friday, February 4, 2011

Shriner's Hospital for Children

We are recovering from week one of Cast #7.  A quick update to William's cast day: Chad and I made the decision to keep William out of cast for a very short break.  We were growing tired of having him out only to face the heartbreak of watching his little spine shift back to where we were before.  He came out of cast Thursday evening before a Monday morning cast day.  Well we are very excited to report after 5 casts of being stuck at 40 degrees we saw movement in the right direction...he is currently sitting at 25 degrees out of cast!  The only downside to this news is the advice of our surgeon that he really wants the 7 days out next time.  He feels in all honesty it will be the only way to gauge what his spine is going to do on its own devices.  I am taking my tiny miracle in stride and knowing if only for one cast...we made progress. 

I want to take some time to share a little about Shriners Hospital for Children across the country.  Shriners are one of very few NO FEE hospitals still remaining.  Although there are wonderful non-profit Children's Hospitals in our region and across the country, families with incomes above poverty level are responsible at these centers for their out of pocket portion of care.  We have been casting for a year and a half and our insurance, a major carrier, deems his procedure as a non-covered procedure.  This would mean our family would be responsible for $134, 232.00 for the 7 casts we have been fortunate enough to have on our sweet little guy.  Needless to say at many income levels this would mean bankruptcy for many families.  Our total cost so far of William's care has been $7000.00 to Deaconess Hospital for an MRI, close to $1000.00 to Radiology Associates for bad reads on x-rays, $900 to Tri-state Anesthesiologists & $0 to Shriners Hospital for Children. 

In an effort to avoid closing hospitals nationwide Shriners is trying to adapt and build a insurance billing department to claim some form of repayment for services from companies that will be willing to participate in their members care.  Our insurance is not one of those.  Shriners is making it clear to families, they are not responsible for any portion of the bill that is not covered by insurance.  They have gone further to say YOU WILL NOT RECEIVE A BILL EVER FROM SHRINER'S HOSPITAL.  I felt after talking with the nurses at Shriners this week this should be shouted from the roof tops! 

I was having a conversation with one of our Shriners friends and I said what is wrong with people like Oprah for not reporting on such a miracle in her own city.  She said you know that is all it would take is for one very prominent person to tell these stories.  She went on to say St. Judes is a similar hospital in terms of no child is turned away for their families inability to pay, she said they have the Thomas', John Goodman, Sarah Jessica Parker as well as a dozen other celebrities singing their story...We just need one. 

I am no celebrity, but I am going to sing their song and encourage everyone who reads this to tell someone else and tell them to tell someone else.  We need a movement to save our centers.  In the tri-state alone, kids are being cared for at Shriners Hospital's in Cincinnati, St. Louis, Lexington and Chicago.  Lucky Cast Kids are being casted at Shriners Hospital's in Chicago, St. Louis, Lexington, Greenville, Portland, Philly, Erie, and Salt Lake no cost to their families.  Let's spread the good news. 

Tuesday, February 1, 2011

Cast # 2 finally

Miss Kiya got cast #2 yesterday after a very long 2 month break. If you recall we had to cut her cast off early at the end of November due to a nasty, infected sore on her back. Cast date for mid December was cancelled. Cast date got rescheduled for mid January and Kiya got sick so we had to cancel. Well, yesterday was the day.

We were very fortunate and blessed to spend the day with William and Giana. It makes such a difference to have you friends their with you. They get it. We can support each other. It was truly amazing to see both little kiddos and their amazing families.

It was a long day for sure. There were 4 casts that day and Kiya was casted 3rd. We left Shriner's at just after 2pm after having been there since 6am. Kiya was a trooper. She was silly at times, feisty at other and sometimes just plain mad. That said she did say Thank you to Gwen, Robert and Maxine. She yelled and screamed at all three of them at some point in the day but by days end she was being really polite.

After the long break, I was mostly prepared to hear not so good numbers. I wasn't quite prepared to hear just how bad. I was hoping she would have held some sort of correction but in fact she measured 60 + degrees out of cast. In September at her first cast she measured 52. Not great.  But Dr. H worked his magic and pushed and pulled and Miss Kiya is currently being held at 15 degrees in her snazzy pink cast. This man is a true gift. He was very encouraging and still feels we can get complete correction with Kiya if we stay the course. So we are here for the long haul.

We know we have a long road ahead of us and I am so grateful that I don't have to walk this path alone. I hate that we have to walk the path yet I have made these amazing friends so that is a big bonus.

We are settling in to our new normal. Kiya is such a trooper and has bounced back rather quickly. She is walking around, bending to pick things up, crawling some, rolling over, and sitting up for short periods of time. She climbed a few stairs and has tried to get back up to a stand after lying on the floor, couldn't quite get it yet but she will. She even slept on her side last night for a little while. And today she sat on her tricycle. She doesn't quite reach the pedals but she wanted up there and moved it with her feet. It was great.

I am anxious to see what Kiya does next. Last cast she learned to walk. Will it be full fledged running? Will it be jumping? Both? Something else? We shall see.

For now we are just going to enjoy the pink cast and the lack of worry. For the next 12 weeks my baby girl's back isn't going to get worse. That is a huge relief. Don't get me wrong I loved the break and all the squishy hugs but for 2 months I worried, I watched and deep down I knew her back was pretty crooked. 12 weeks with no worry sounds pretty fabulous.