Sadie Strong Fundraiser

After Sadie fell at school and went through the complications from her broken fixator and serendipitous removal, her current 1st grade teacher reached out to me and suggested that she and Sadie's kindergarten teacher would like to plan a fundraising benefit for Sadie.  We were so excited and thankful for their help and fast forward to March 25, it was a huge success!!!

There were 100 basket donations with amazing and extravagant prizes, approximately 300 people attended and such an energy of love and support in the room!  The entire Hopkins staff took care of everything and worked as such a dedicated team to set up all of the baskets, register guests at the ticket table and overall produce the most organized and loving event.  We were so touched by all of the support and will never forget our next step in the process, which will be her 2nd lengthening tentatively in 2019, is supported by everyone who either attended, donated or contributed in some way to this event!

A huge thank you to Bernadette Elam and Toni Grandini for planning it!  Thank you to all of the Hopkins School staff for all of the help and support!  A GoFundMe page has also been set up for people who could not attend but wanted to contribute and we wanted to send a huge thank you to everyone who contributed to that as well! 

Jimmy and I gave speeches at the event thanking everyone.  I read the poem, "Welcome to Holland" and was really thankful to have the chance to talk about Sadie's accomplishments so far and what we've learned in the process.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A few pictures from the event:

Lastly, at each table I displayed a quote that has inspired us over the years at some point or another.  Here are a few of my faves!  Hope they inspire you too.

“It’s important to remember that we all have magic inside us.”

-JK Rowling

“Where there is no struggle, there is no strength.”

-Oprah Winfrey

      

“A happy life consists not in the absence, but in the mastery of hardships.”

-Helen Keller

“May your wings be strong.  May they carry you above the clouds and into the headwinds.  May they never falter.  Not even once.”

-Maleficent

“Imagination is the only weapon in the war against reality.”

-Cheshire Cat, Alice in Wonderland

“The braver you are,

 the more you’ll see.”

-Coraline

“Venture outside your comfort zone.  The rewards are worth it.”

-Rapunzel

“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places.  Those who don’t believe in magic will never find it.”

-Roald Dahl

“I think the reason why I’m the person who I am today is because I went through those tough times

when I was younger.”

-LeBron James

If your dreams don’t scare you, then they’re not big enough.

-Unknown

“Normality is a paved road: it’s comfortable to walk on, but no flowers grow on it.”

-Vincent VanGogh

“There’s the whole world

at your feet.”

-Mary Poppins

“There are no mistakes, no coincidences. All events are blessings given to us to learn from.”

-Elizabeth Kubler Ross

“The best thing to hold onto in life

is each other.”

-Audrey Hepburn

Sometimes you have to find your own fairytale.

“Anyone can give up; it’s the easiest thing in the world to do.  But to hold it together when everyone else

would understand if you fell apart, that’s true strength.”

-Christopher Reeves

“All of our dreams can come true if we have the courage to pursue them.”

-Walt Disney

“She was unstoppable, not because she did not have failures or doubts, but because she continued on

despite them.”

-Beau Taplin

A bird sitting on a tree is never afraid of the branch breaking, because her trust is not on the branch but on it’s own wings.  Always believe in yourself.

 “The very things that hold you down are going to lift you up.”

-Timothy Mouse, Dumbo

“Courage is more exhilarating than fear.  And in the long run,

it is easier.”

-Eleanor Roosevelt

“You may not always have a comfortable life and you will not always be able to solve all the world’s problems at once but don’t ever underestimate the importance you can have because history has shown us that courage can be contagious and hope can take on a life of its own.”

-Michelle Obama

“All you need is faith, trust, and a little pixie dust.”

-Peter Pan

 

“Even miracles take a little time.”

-The Fairy Godmother

Fixator Removal and Winter in Florida

Sadie went back to school in August and went every day wearing her fixator.  Sienna and I would drive her and pick her up every day because we felt the bus would be too bumpy and uncomfortable for her.  She had a few nasty pin infections that we got antibiotics for and she came home a few days early from school because of pain.

On Tuesday October 10, the nurse called me and told me Sadie fell.  I went to pick her up and her fixator was broken apart.  We went to Ahuja UH to see Dr. Liu and after a few hours there, a few x-rays and texts with the Paley Institute, Dr. Paley said he can do the surgery to remove her fixator on Thursday.  So Sadie and I went home, booked our flights and flew down to Florida the next morning.

We spent one night in the hospital and Dr. Paley said she was non weight bearing for the next month.   They also made her a hip brace and a hip abduction pillow to wear at all times.  We ended up staying for an extra week for PT, which was all unexpected.   Once again, our great friends/Florida family helped us out so much with connecting us to a condo and countless other things we needed that you don't think about when you're by yourself out of state dealing with a medical situation.  We got set up with our wheelchair again and walker.  

Due to all of the unexpected expenses, I started a fundraiser selling Sadie Strong t-shirts and sold 177 shirts!!  Thank you so much to everyone who bought one to support us!!  We were able to use the money raised to help pay for our condo rent in Florida and our out of pocket PT expenses that were no longer covered by insurance.

We kept Sadie home from school during this time on a medical leave because of how fragile everything was and the school sent over a tutor (a wonderful 3rd grade teacher) to work with her during her time at home.  

On my birthday, we got an x-ray taken and got the news from Dr. Paley that she can bear weight again.  We then made arrangements to go back down to West Palm Beach for 3 weeks of aggressive PT to get her really going again.

 
We were all there during Thanksgiving time and worked with our favorite therapists again to get going.  We made it to Disneyworld again a few times and even spent Thanksgiving day at Epcot!  One day a baby frog got in our car while we were at PT and the nice security staff got it out for us, as it was burned to a crisp!  It reminded me of Dart from Stranger Things!  We definitely enjoyed swimming and getting sun in December!

The day that Dr. Paley told us Sadie didn't need to wear her hip brace anymore.  Sienna put it on and wore it home!:)

A highlight of our trip was participating in the Palm Beach Marathon!  The Paley Foundation sets up a 5K included with the race for all of the patients and families in town.  Everyone walked, ran, crutched and strolled to the finish line.  It was so much fun and one of the most uplifting days of our lives!  We are now looking for more 5k races to do!

 

Sadie is doing really well now and went back to school in January after Christmas break.  She is running around and even started ice skating!  I'm amazed every day after all of the hard work and times we went through that she is doing so well on her longer and functional leg.









  

My friend Lauren shared this with me during one of our toughest times and it really helped me get through those tough weeks in October:

 

3 new inches! and Consolidation Phase

First of all, sorry for the delay in posting!  I should have been posting little updates all summer but things just got a bit overwhelming and emotional.  I wanted to quickly share an update on our amazing progress so far!

We stopped lengthening at the end of July and Sadie gained 7.8 centimeters of new length on her leg.  That is a little over 3 inches and almost the max of what you can get with an external fixator!  The visual difference is incredible!  We are now in the "consolidation phase" which means her bone is actually growing back together from where we separated it all spring and summer (it's called distraction).  I have to say it was the hardest thing we've ever done in so many ways and very emotional seeing her in pain with me being the one inflicting most of it with physical therapy 3 times per day and the knee bar at night.  But she is very happy with her new leg and just happy overall.  We really enjoyed our time in Florida and I feel the girls and I created amazing memories and a bond together going through something like that.  We learned a lot about being brave and having courage.  It's amazing what happens when you set your mind to be a certain way.  Our overall goal was to be as happy and positive as possible.  Our Brave Sadie Spotify playlist helped us a lot!  Here is a link: https://open.spotify.com/user/22nskxshe4suclbto6c6cpfhq/playlist/5bvyWXYWdukGAcN5OOcjRT?si=ehFbioUi

We flew back to Ohio on July 31.  Sadie started 1st grade on August 17.  Sienna and I drive her to school and pick her up every day because we are too nervous about all of the bumps and movement if she rode the bus.  She isn't allowed to play on the playground equipment at school and also is not allowed to run or jump as her bone is now growing in and everything is quite fragile still.  All her friends at school are taking great care of her and sitting with her at recess.  We are still doing physical therapy 3 times per day (attempting to really get those in), wearing the knee bar at night to hold her leg straight and still have the need to tighten it, and also cleaning the pins daily.  It's a lot of work!  The physical therapy is still quite difficult, as her muscles are very tight.  I try to use the heating pad and a mixture of coconut oil with a bunch of essential oils mixed in as a massage rub.  We also still take a lot of ibuprofen (both of us, haha).  Not sure how much anything helps but we keep trying!

We get x-rays monthly and send to Dr. Robbins at the Paley Institute so he can tell us how her leg looks and when we can schedule the surgery to have her fixator removed.  I'll update more as things progress!  We're hoping for November timeframe for fixator removal. 

Sadie doesn't wear her orthotic-prosthetic anymore because her leg is too long for it!  She now wears a shoe lift.  The upside of that is that her leg is longer and she is much less self-conscious about it.  The downside is that we have to pay for that out of pocket each time we want a new pair of shoes with a lift she can wear - about $60 per pair.  I had 3 pairs made for her before school started and she seems happy with those for now!

For the future, Sadie will need 3 more lengthenings in order to finally have her feet on the ground when she stops growing.  Every other summer, we will travel back to West Palm Beach and do this all over again, for about the next 8 years.  Good thing we're in love with Florida!!  The good news is she can do the next 3 with an internal fixator, which we are told by all the other Paley families who have experienced it that the pain and hassle is much much easier than lengthening with the external fixator, which she wears right now.

We're so thankful for the ability to be able to help Sadie get 2 feet on the ground and eventually be shoe lift and prosthetic free with a fully functioning leg and hip!

Here are a few pics from our 4 months in Florida and beyond!  What an adjustment going from living in Palm Beach Gardens and back to Mentor.

Back in Ohio: