Hope is a Journey….

To My Sunshine

My Dearest Sasha,

When you were a heartbeat within my own, oh the dreams I had for you….the plans I had for you…

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Never in a million years did my plans involve the quiet hum of hospital pumps,

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The urgent screams of the monitors intermittently interrupting our slumber as we count the hours til daylight,

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Counting breaths instead of moments….

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Some nights are harder than others…and tonight, I can’t help but weep for your tiny little heart….you see….I always thought that those precious lips would sing with joyful laughter, not cry out in fear or pain….

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Those eyes….I hoped they would only see the splendor of this earth, not pour out the hurt that overflows from within….

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Those ears….I prayed that they would only hear giggles and songs of happiness that swell from your heart – I never thought they’d be hearing the monotonous alarms going off next to your bed….

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I always hoped those tiny little toes would feel the warm sand or the cool water rushing around them…I never imagined that they instead would know the feeling of the adhesive of a pulse oximeter squeezing tightly…

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I always wanted those tiny sweet hands to hold your dreams…I never for one second thought that they would ever clutch starchy white sheets in pain…

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I always thought your arms would know only warm embraces….I never – for one second – thought that they would bear the scars of countless IV’s.

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My precious sweet sunshine…you should drift off to sleep in peace…I always thought that’s how things were going to be…you deserve that.

20140814_131112I can’t promise you that every tomorrow will be beautiful, peaceful, gentle, or merciful to you – as a matter of fact, my heart breaks a little more each and every moment that passes by – because a lot of your ‘todays’ have been pretty rough lately…but I can promise you that I will never stop trying to make it so your lips sing with joyful praise, your eyes see the splendor of this earth, your ears hear the giggles and songs of happiness that swell from within your heart, that your toes feel the warmth of the sand and the coolness of the ocean kissing them every chance we get, that your hands reach out to hold mine in peaceful moments as we carry your dreams together, that your arms would know more warm embraces, that your heart would know sweet peace…I would go to the ends of this earth for you – to give you that peace.

Lord only knows why He chose you to live this life, to walk this path, to know this suffering – and I struggle with that…but I TRUST in Him and I TRUST that He is with you, that He will never leave or forsake you, that He will mend you in the broken places and make you stronger.

Someday, my Sweet Sunshine, we will all understand why things have to be the way they are – but until then, I will rest in the knowledge that our God is Bigger, Stronger, and Mightier than anything that can happen to us.

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I love you to the moon and back….

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The Unknown

It’s been a rough road lately.  So many things are out of our control in this life – and, when it relates to someone you love…it’s downright heartbreaking.
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I won’t lie to you – these past few months have truly shaken us to the core.  We have tried desperately to make things easier for Sasha and, despite our best efforts – we have failed.  We’ve had to have some tough conversations and found ourselves in a place we have never been in before….a place where NO decision before us was a ‘good‘ or ‘desirable‘ decision.

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After some soul searching and a lot of conversation with our medical team, we finally did land on a decision – but the entire process challenged me to get back to the core of my faith.

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You see, sometimes life doesn’t give us what we think it should.

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Sometimes it feels like life has cheated us or has betrayed us….and sometimes, it has.

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BUT – until you can let go of what you think your life should be (or what life should be like for someone you love), you will never be able to fully embrace the life that awaits you.

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Is it scary to take the leap of faith and just TRUST?

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You better believe it is!!!!

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BUT, you can’t have it all.  You can’t have the life you expect AND the life that is meant to be for you.

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You can’t experience true joy without abandoning your expectations.

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You can’t LIVE until you LET GO.

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In 2010, life changed dramatically for me.  My body revolted and I was left reeling – trying frantically to pick up the pieces and move ahead with my life the way I thought it should go.

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It took some time, but I eventually realized that the life I envisioned just wasn’t going to be the life I was going to have.  It was at that point that I decided that I was going to just embrace the road ahead and take it day by day, step by step, hour by hour, breath to breath.

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It wasn’t easy…but slowly a new life blossomed before me.  It sure wasn’t the one I expected it to be, but it was one that was breathtaking, beautiful, painful, and scary.  But you know what?  It was all worth it.

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You know what else?  I would have NEVER imagined I’d be the person I am today.  I would have NEVER imagined that I would be in the place I am today.  I would have NEVER imagined that I would have the blessings I’ve been given.

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Kurt Stahl of Cuppa Day and The Stable Coffeehouse on "Show Your Hope"

Kurt Stahl of Cuppa Day and The Stable Coffeehouse on “Show Your Hope”

There are SO many more blessings that I could go on and on about….so many people who have touched our lives…there wouldn’t be enough space in this post to even scratch the surface…

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So, when life threw us another curve ball – I naturally fought it, feared it, and was broken by it.

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It wasn’t until I was listening to the final version of one of the songs I recorded in Nashville that I realized I wasn’t following my own words….and I realized that it was time to embrace it with an open heart.

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We fought SO hard against the things that were needed because we feared the change…but the truth is that the change is what was needed and the expectations are what held us back.

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That’s not to say that things haven’t been hard (because they have been), that there haven’t been tears (because there have been many), that I don’t wish things were better (because I do), and that I haven’t felt broken or weary (because I have) – it just means that I know that, even though it’s not the way I ‘expect’ things to be – it’s the way things are.  I can either run into the arms of The Unknown with a fierce and determined heart OR I can let The Unknown swallow me whole.

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I think you know which one I chose.  I hope you’ll do the same.

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Love and Light,

Stefani

Out with the Old….

Oh, 2013…you have been an interesting one.  This year has caused our cup to runneth over – with love, heartache, compassion, peace, joy, uncertainty, fear…and HOPE.

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I could probably take up A LOT of internet space here just talking about our year – and, I actually started doing so in a separate post that I decided to scrap.  You know why???  Because, instead of going into great detail about it all, I’d rather just sum it up simply.  I apologize for the late posting – but 2013 had a rough ending and I’m just finally catching up and getting back into the swing of things.  I’ve got a few blog posts to catch up on – but this one seems most fitting to post now.

We laughed…..

We cried…..

We struggled….

We persevered and fought hard…

We were brave….

We were scared….

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We were joyful…

We were weary….

But no matter what, all that mattered was that were were together.

And, after reflecting about this entire year – one thing stands out.  Regardless of every hard moment, every scary moment, every uncertain moment – we had SO MANY beautiful, wonderful, fulfilling, promising moments that carried us though.

We have been blessed beyond measure to have a wonderful family that has stood by us and been there for us through it all.  I could not be more grateful to have a mother, father, aunt, and niece to share a home with and wage these battles together.

We have been truly humbled and inspired by our dear friends (both near and far) who have given us strength and comfort (or a good swift kick in the rear) when we needed it most.

We have had a wonderful school staff (and home school teacher/tutor) that (despite my frustrations over trivial things), have been outstanding in their support for our children and have genuinely loved them through some pretty difficult times.

We have the most amazing medical team that communicates clearly, honestly, and respectfully – keeping in mind our desire to keep things as non-invasive and minimal as possible.  They are dedicated, hard working, and have brought back pieces of Sasha (in particular) and Will that I never dreamed I’d see.  Without this team, I fear we’d still be muddling along trying to find our way as we watched our kids continue to regress or lack forward progress.

There have been times during this year that I have felt like I couldn’t catch my breath….like every step we took forward – we would take 3 steps back.  I’ll be honest – I have had some really huge fears come to the surface this year – and those fears were real and warranted, but I had to learn (and am still learning) to let go of the things I cannot control and embrace whatever comes our way as tightly and lovingly as I can.

And yes, there were tough times in 2013…here are a few of the toughest times this year:
Learning Sasha was continuing to regress developmentally
Watching Sasha lose skills
Hearing how rough things were going medically for both of the kids
Will being bullied at school
My other family members struggling medically
Watching Sasha’s little body struggle to regulate itself – and then, despite our best efforts – accepting that we had done everything we could non-invasively to mitigate it.

And ultimately being left with decisions to make – despite the fact that there were no ‘good‘ or ‘easy‘ options.

BUT….there were also SO MANY good times this year.

Here are some of the most incredible times of 2013:
Watching both children work hard and make progress during physical therapy (and Occupational Therapy for Sasha)

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Watching Will and Sasha (and my niece) blossom into amazing little advocates:

Time with old friends

Amazing new friends who became family….

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Fundraising and Blood Drives…

So yes…2013 had some really crappy moments, I won’t lie to you.  BUT – the beautiful, breathtaking, empowering, and wonderful moments take center stage to remind us that, even in the darkest times – suffering bleeds joy.

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May 2014 be a better one for all of us,

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Love and Light,

GotHopeBW

Stefani

Oh, and P.S. – We’ve got some pretty awesome things on tap for 2014 – Stay Tuned!

Deeper Meaning….

showyourhope:

Christmas is fast approaching, here is my challenge to those of you who celebrate it.

Originally posted on Show Your Hope!:

Christmas will be here in just a few days.  The chaos of shopping, wrapping, cooking, cleaning and getting lost in the commercialism of it all is ALMOST over…

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Soon, our children will be sleeping with visions of sugarplums dancing in their heads….

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Awaiting the arrival of “Santa Claus” and a plethora of gifts – many of which they don’t even need.

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Somehow, along the way….we’ve lost the true meaning and we’ve gotten sucked into the materialistic clutches of society.

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Even the best of us get caught up in the tradition of shopping til we drop, giving more gifts than necessary, and pushing the true meaning on the back burner….

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Over the next few days, I want to challenge you all to look a little deeper into yourselves – reconnect with the true meaning of Christmas…

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And remember that this season is about the birth of our Savior and Lord, Jesus…

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For one day….

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Some blog posts don’t need to be ‘cooked up’ from scratch every year….sometimes they just need a few edits. Happy Thanksgiving folks!

Originally posted on Show Your Hope!:

Thanksgiving is upon us, and I can’t help but feel nostalgic and eager to spend this day with family and dear friends.  This day is about reflection, joy, togetherness, and…most  importantly gratitude.

This is the day in which we gather together and count our blessings, create new blessings, and share our blessings with one another.

One of my favorite things to do is talk with my children about all the wonderful things we have to be thankful for in our lives.  We talk about how important the small stuff is and how meaningless the materialistic stuff often is.

We talk about why giving of time, talent, and support is more meaningful than giving money or things to others (though, yes – at times – money and ‘things’ are necessary items that people do need).

We talk about WHY we celebrate Thanksgiving…

You see, it’s not just about being grateful to…

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Shine On

How do find the words to sum up the life of someone who was so beautiful, inspiring, and courageous in just one post?

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I don’t know if there truly is a way do this fully – but I am going to give it my best. 

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Today marks one year to the day that Leslie Cora Whitt-Williams took her last breath on this earth.  To honor her, I wrote this song and am dedicating it to her memory.

Leslie (Whitt) Williams and I met in 2010 on a trip down to Georgia to see a specialist.  I had been talking with her and her mother via Facebook prior to that, but we finally got the opportunity to meet – and it was a time I will always cherish and remember.

It’s SO hard to believe that it has been a year since Leslie was taken from us because of Mitochondrial Disease.  Every time I think about it, my chest gets tight, the tears well up, and I feel like I can’t breathe.  She was so full of life, love, and spirit…..so much spirit!

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Leslie’s journey really began in June 2007 when she had just turned 19. She was 10 1/2 hours away from home in the mountains of Boone, North Carolina working at a summer camp as a camp counselor for mentally/physically handicapped children and adults. Her mom received a call from the camp director that they found Leslie unresponsive with lips blue, no pulse, and blood sugar of 19. They loaded her up into the ambulance headed to a very small medical center where they had no idea what was wrong with her. They felt she had diabetes and wanted to admit her for testing but, since she was so far away from home with no one there-  she wouldn’t let them. Her mom went down to NC the next day to pick her up because the camp director didn’t want her there if they didn’t know what was wrong and if it would happen again. That began the journey of trying to diagnose her. From there on she started having symptom after symptom and they went from doctor to doctor. No one could figure out what was wrong with her. In the meantime she was getting sicker and weaker. In January 2008 she was diagnosed with Mitochondrial Disease. She also was diagnosed with a secondary condition called Glutaric Acidemia type II.  The battle for Leslie was only to get more and more difficult…and heartbreaking.

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Leslie loved her family, cooking and baking even though she couldn’t eat (her gut was paralyzed due to the damage the Mitochondrial Disease caused in her body). She loved shopping.  It was the thing that she and her mother, Allisa loved doing together. She loved the beach and the ocean. She really loved volunteering whenever – and she did so wherever she could. She volunteered for the American Diabetes Association and other youth camps during the summer.

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Leslie’s dream was to graduate from college and become a Metabolic Dietitian and have a family. She married the love of her life – Jeff Williams on June 4, 2011.   It was a beautiful wedding followed by a wonderful trip to Ireland for their honeymoon.

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In October of 2011, she became very ill with urosepsis,  and that was when everything really started going downhill.  She lasted exactly 12 months from the date of that infection.   During that year she had to have countless blood transfusions, had to be put on oxygen 24 hours a day, had to have a foley catheter placed, and was on TPN 24 hours a day (and she still continued to lose weight).

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She also had a piece of brilliance come into her life when she was paired up with an amazing service dog, Billy.  He was a blessing for her….

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Billy helping get her sweater off

Leslie had a ‘Bucket List’ – here were a few items on it:

1. Find/Marry the love of my life.

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2. Travel to Ireland

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3. Graduate High School Valedictorian

Leslie on the local news because she graduated Valedictorian in 2006 with a GPA of 4.45

Leslie on the local news because she graduated Valedictorian in 2006 with a GPA of 4.45

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4. Graduate College –  Wanted it more than anything but never got to cross it off her list.
5. Become a Dietitian – Wasn’t able to make this happen, but it never stopped her from trying.
6. Visit all 48 land states (accomplished, but no pictures at this time)
7. Meet Cincinnati Reds players

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Leslie’s mom, Allisa and Leslie’s husband Jeff crossing this off the bucket list for her.

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8. Milk a cow

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9. Fold 1,000 paper cranes and make a wish

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Leslie wasn’t able to do this on her own, but countless friends made them and sent them to her.

10. Collect all 50 states key chains – Only one state left and it’s on the way!

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11. Compose a song with lyrics

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12. Visit Grand Ole Opry in Nashville

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13. Meet Reba McEntire

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14. Ride in a blimp

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15. Visit San Diego Zoo

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On October 21, 2012 at the age of 24, Leslie passed away.
Heaven gained a very smart, beautiful and talented young lady that day.
At the time of her death her mitochondrial mutation was still unknown.

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Truthfully, Leslie lived more in her short (but very full) 24 years of her life than most people will ever live.  Leslie inspired me to keep fighting when things were hard, scary, or downright unfair.  She bravely and courageously fought until the bitter end.  Mitochondrial Disease may have taken her body from this earth, but it will never take her spirit and her legacy that she left behind for all of us to carry on.  If only this world had more “Leslie’s” in it….boy would it be a better place.

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Leslie’s mother wanted me to not only show how beautiful, amazing, and full Leslie’s life was, but she wanted me to share with you what Mitochondrial Disease did to her and took from her…

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Just a few days before she left this earth

Over the years, I have become close with so many families that battle with Mitochondrial Disease and Primary Immunodeficiency Disease.  Their lives, their fight, their love – it has changed me.  We become close, and – when someone in our community loses their loved one, we all feel it.   For me, the loss of Leslie hit so very close to home.  I think of her all the time.  Her mother and I remain friends and I often feel at a loss for words when she posts about her heartache, grief, and absolute sadness over the loss of her shining gem.  Truly, there are no words to quell this type of loss.  But, I hope in some small way that this blog post will bring her some comfort on this difficult day.

I don’t ever want this world to miss out on knowing Leslie – so, without further delay…

Meet Leslie:

Part 2

Part 3

Part 4

Whitt Sister Radio

I want the world to SHINE ON like Leslie did every moment of her life.
So, my challenge to you is to SHINE ON her legacy….SHINE it ON every person you meet.  It is a blessing and a gift to be able to carry a piece of Leslie with you – and, now that I’ve shared her with all of you, you can do just that.  You can SHINE ON her light everywhere you go.  Tell people about Leslie and her life – inspire them!

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And I could not finish this post without talking about one of the most amazing families I’ve ever come to know.  Leslie’s mother and I became close over the years…her dedication to Leslie is one that forever has burned a place into my heart.  The love that her entire family –  her parents, her husband Jeff, her sister Megan (and others) – just the love that they all shared – it leaves me speechless.

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Today (and every day), I ask of you all to send prayers of comfort and peace to Leslie’s family as they come to the year anniversary of her passing.

Rest In Sweet Heavenly Peace, Leslie.

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Dear Disney…

Dear Disney,

I would like to take a moment and thank you for the joy you were able to give my children the last time we visited.

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I can’t begin to tell you how wonderful it was to see joy scribbled all over their faces….IMG_1079

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Last year, after a particularly tough time for all of us (medically speaking), my daughter had only one wish….to go to Disney and see the Villains during Halloween.  We scrimped, we saved, we planned – and our entire family went….it took a lot – but we made it happen for her.

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It was a magical time for all of us.

You see, vacations like these are truly gifts to us.  My family battles Mitochondrial Disease, Primary Immunodeficiency Disease, Autonomic Dysfunction, Seizures, Episodic Ataxia type 2/Familial Hemiplegic Migraine, and more.  Life is not easy here on our side of the street, but it is truly full of blessing.  We know how priceless each moment is, and we treasure those moments with the knowledge that nothing is certain (for any of us).  While we try to inject normalcy, fun, and laughter into our every day life, the medical piece is often tough to avoid or deny – and so we do our best knowing that it’s just (in the words of our kiddos) ‘Not fair.

Being able to take a trip like this is a great challenge for families like ours for many reasons.  One reason is that our household incomes are typically strained due to medical expenses, lack of being able to have 2 working parents (one needs to be able to take care of the child(ren) when ill, take to medical appointments…and, in some cases – being home is necessary because the child or children are homebound because they are medically fragile – like ours were for 109 days straight – and then, while they could leave the house after that point, they still couldn’t return to school – and the total time between the last time they were in school to the first time they stepped foot back into a school was 257 days).
While many might say, ‘If you can’t afford it, don’t do it,‘ Well, I would hedge to bet that a good portion of those folks don’t live the lives we do – uncertainty from one day to the next, nor have they had to watch their child(ren) go through unimaginable struggles.  To us, being able to give our child(ren) something magical and memorable is worth more than anything in this world….so we do what it takes to make it happen.

Another reason planning a trip to Disney is a challenge is that life is unpredictable (for all of us, yes – but for families like ours…even more so).  From one moment to the next, you just have no idea what to expect – illness, crisis, meltdowns….you name it….it all dangles us on a very tight and precarious thread of uncertainty…so planning things for ‘far‘ in the future are often difficult and a task that can be daunting.  Just to get on a plane alone, you need notes from doctors regarding all the equipment you are taking with you on board….never-mind all the ‘contingency plans’ that need to be in place should an emergency arise while you are away from your medical team.

Disney has always been a place of joy and happiness for all – and the one and only reason we went above and beyond to grant my daughter her ‘wish‘ in 2012 was because of our wonderful first experience in 2009.  We knew that Disney would help make our visit as accessible, memorable, and magical experience for us – even with all our challenges – as every other child who entered the park.

We were blessed to be able to use the “Guest Assistance Card” for our trip.  I went to the Guest Assistance Center armed with letters and protocols from all of our physicians – yet the staff never even asked to see them or either child – we were just handed 2 passes with a bunch of stamps on it.
We honored the rules of the pass, we appreciated the pass…and we did not abuse it.

For us, it meant that my 2 children who have significant medical challenges (as well as some emotional ones) would be able to actually experience the magic of the park fully.  They were able to do short waits in shaded areas, we were able to take the wheelchairs through the exit and be able to ride on rides that had no alternative handicap entrance, we were able to skip long lines allowing us to only have minimal wait times (which was great in the heat and chaos – both of which were nearly too much for my children even WITH the pass).   And even with all of those wonderful things in place, it was sometimes still too much.IMG_9949
BUT, when all was said and done, both kids had a memorable experience – and our family was able to put the focus on FUN instead of all the other daily stressors we generally have to deal with – they were still there, but it wasn’t our focus.  I can’t put into words what that memory means to us – especially since things have changed so much for us medically in the past year.

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This week the nation is buzzing about your elimination of the Guest Assistance Card and your implementation of a ‘new way‘ of doing things.  My assumption is that story on the rich and entitled folks hiring disabled individuals so they could skip to the front of the lines was the catalyst in this move.  I’ll reserve my opinions regarding these people – because, as Thumper said it best, “If you can’t say something nice….don’t say nuthin’ at all.”
I’ve heard several different versions floating around of what the ‘new way‘ will be – and I am not sure which of them is the actual way you are going to do things,  but I have to tell you, Disney….I’m not impressed – not at all – not with ANY of what I’ve heard as your ‘new way‘ of handling things.

For those who are unaware – the ‘new way‘ has been described as basically a glorified fast pass – meaning that those with disabilities (no matter what type) will be allowed to use the pass for one ride at a time – you’ll get a return time – and you can’t use the pass again until that ‘return time’ has passed.  In the meantime, they tell you that you can enjoy your wait time by browsing, walking around, seeing a show, watching a parade, finding a ride with a shorter line.   In theory, some would say it sounds great, right?  WELL….for families like ours….NO.  Every precious moment matters – our kids can’t last ‘all day‘ in the parks like most  – we often don’t see the shows, do many of the parades, or just putt around…too much energy is wasted on this and then the kids don’t have the energy to enjoy the rides (which is why we go to Disney instead of somewhere closer to home) – and when we leave, we aren’t able to come back later in the day, our kiddos are usually toast and we aren’t able to return to the park until the next day – so waiting in the heat, the chaos, the shows (that don’t interest many of these kids due to their emotional/sensory issues) is just not feasible.

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Honestly, Disney….for our community – life is tough enough – we shouldn’t have to worry about things like this.  Quite frankly, it was the ONE THING I knew I DIDN’T have to worry about when we planned our 2 trips (in 2009 and 2012)….and now, it’s just going to be one more thing to add onto our list of ‘worry‘ when planning what should be a ‘carefree‘ time for our families.  As a matter of fact, I just might not plan our next ‘special’ vacation (if there ever is one) to be at Disney – with these types of changes, we wouldn’t really get to enjoy much of anything given all the obstacles we will have to face and work around (medically AND with your ‘new way‘).

Disney….are you listening?  Right now, I don’t believe you are…..because, if you were – you’d NEVER have dreamed up this idea.  Aside from those who are in a wheelchair due to a simple injury or just being unable to walk distances without any other medical/sensory issue, I don’t see how this ‘new way’ makes ANY sense.

My suggestion to you is to try to create a small panel of parents who can represent the larger community (Autism, Physical Disabilities, Medical Disabilities…just to name a few) and have them weigh in on your ideas before you roll out something with a ‘let’s see how this works out…..‘ attitude. Have it be tried by a select group of WILLING special needs families and let them tell you what the kinks are before you roll it out across the board.  Don’t make what is supposed to be a special trip turn into a nightmare of jumping through hoops, asking for help with guest assistance and mounting frustration for families who have been longing for a stress free (well, as stress free as it gets), magical vacation with their families.

Not only is your ‘new way‘ almost insulting to our population (because, honestly – it’s become crystal clear that you have NO handle on the impact these changes have on families like ours), BUT the responses from people voicing their disdain for our ‘disabled‘ community regarding the pass is absolutely disgusting….

Disney, I want you to read what people are saying about our children….the ones who battle hard, go through hell, and keep on smiling…..
No offense to special needs kids but do they deserve to ride before everyone else?
My response: Really?  “No Offense”  – are you kidding me?
NO, they don’t ‘deserve‘ to ride a ride before everyone else – but they cannot sit in the sun, their wheelchair doesn’t fit through the line, and we have limited ‘good‘ time at the parks because their bodies are failing….they DO deserve to have fun just like your kids do – it just has to happen differently - for reasons you clearly will never understand.

Is taking your special-needs kid to Disney that important????
My response: Doesn’t EVERY child deserve to have a Magical Time?   Many of these kids may not live to see another birthday, I think they deserve a break from the ‘hell‘ that they go through in order to have a little uninterrupted happiness.  Have a heart.

Some parents just want to take the easy way out.
My response: If you call getting up 2 hours earlier than everyone else to get meds set out, check/recheck/triple check the weather, pack emergency supplies (like rescue medication for my daughter’s seizures, a monitor for heart rates and oxygen saturations, ice packs and many other things), packing the vehicle with wheelchairs and other equipment – and THEN spend another 2 hours getting your kids up and ready to go….and then worry about having to monitor ALL of their medical stuff ALL day long KNOWING that the extra activity is bound to stress their fragile bodies some….KNOWING you have to find the balance of giving them some Magic and pushing their bodies too hard – if you think THAT is the ‘easy way out‘ – well, I think you’ve got another thing coming.
Walk a day in my shoes, pal….walk a day in my shoes.

If they can’t simply wait in line or come back within a designated hour window – the parents might need to rethink where they are spending their vacation.
My response: I’d LOVE for you to understand just how precious an hour is in our day – an hour makes or breaks us. Sometimes we’re only 2 hours into our day and my daughter is completely done – game over – and our day is done, we have to head back home and we have to regroup.  That doesn’t mean that we aren’t going to try to give her happiness and joy.  Our children are just like yours – they have the same right to experience joy, happiness, and magic just like your kids do….the difference between your family and mine clearly is that we APPRECIATE the ability to be able to take a vacation. We APPRECIATE the opportunity to make memories and give our kids a break from the not so awesome things in life.   We plan these vacations with the hope that we can actually MAKE IT to the vacation we’ve been planning THIS YEAR and the thought of ‘next time‘ isn’t even in our horizon….because, to us….there may not be a next year.
SO…we thought LONG AND HARD about where we wanted to spend the VERY LITTLE money we had and chose to spend it at Disney World giving our children some much deserved JOY. What they go through in their short and precious lives is more than ANY human being should ever endure….I think it’s YOU who needs to ‘re-think‘ things.

It’s so upsetting to hear people say such callous and thoughtless things.  I hope and pray that they NEVER have to understand the challenges we face – but my heart aches for them to – just for one moment – realize that the journey we are on is not one of entitlement or choice. It is one we travel because we have to, because we love our children…because we would do anything for our children (including giving them a few days where SOMETHING in their life was ‘easier‘ or more joyful and magical than it normally is).
I would never compare or judge the lives of others and it’s sad that so many feel they have the right to do so to others.

TO ALL THOSE WHO AGREE WITH SOME OF THE STATEMENTS IN RED ABOVE: 
Shame on you.  May you never feel the heartache we feel when we watch our loved ones have bad days, seizures, breakdowns, serious infections, hospitalizations – may you never have countless sleepless nights as you watch your child’s chest rise and fall – and you pray for another day to just BE with them.  May you not ever have to watch your child deteriorate, go through painful testing…and other things that you can’t FIX or CONTROLCount your blessings and be grateful for the fact that you can take your kids on a trip and not have to worry about the noise, the temperature, the stress, the crowds, the waits, the meltdowns, the medical equipment, the monitoring, the paperwork to get on a plane, the paperwork to carry in the event of an emergency, the wheelchairs, transporting medications on airplanes and in the heat, infusions, treatments, illness, metabolic crashes, medical crisis (the list goes on and on)…..be GRATEFUL instead of critical and judgmental.

THE TRUTH: I would trade my life in a HEARTBEAT for my kids to be normal for even just ONE DAY so they could go into Disney World and wait in lines.  Instead, their Mitochondrial Disease, Primary Immunodeficiency Disease, Seizures, Autonomic Dysfunction, sensory issues, and anxiety comes with us to Disney- and our days entail bringing our bag of regular and rescue medications, pulse oximeters, oxygen, blood pressure cuffs, ice packs, blood sugar testers, wheelchairs, and so on…..I’d stand in line FOREVER for a chance having 2 healthy kids (even if it’s only for ONE day, it’d be worth it)….but instead, THIS is what we live:

ENTITLED?? I think not.

Disney, I hope you’re hearing me loud and clear….my followers on this blog, the social media friends I have and so many more have all vowed to boycott you if these changes are indeed what end up being your new system.  Honestly, the proposed changes I’ve read so far are incredibly flawed and they do  NOTHING but punish those who truly need it for the misgivings of the rich and entitled who abused the pass and ruined it for those who respected it, each other, and our community.

And, Disney – if you’re actually reading this – AND, If you want to talk to REAL families who have REAL and PLAUSIBLE solutions – message me HERE, I’ve got plenty of ideas and a diverse group of parents who have children with various challenges who are more than willing to share their stories with you in order to help you help the rest of the disabled community have a special and magical experience at Disney when they visit.  If you’re going to make changes, you may as well do it right the first time and make the changes work for ALL.

To my readers – if you want to stand up and take action – go HERE and SHARE THIS BLOG!

Love and Light – and maybe even a little big of Magic
Stefani
http://www.hoperisingmusic.com

Find me on Facebook HERE

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