Hope is a Journey….

Archive for September, 2013

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

In Memory

The other day, I received a check in the mail with a donation to my Kickstarter in memory of Brittany Wilkinson.

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In an instant, all the feelings I felt the day I learned she had passed away hit me like a ton of bricks.  A flood of tears poured from my eyes.
I had known Brittany through Facebook and all of her advocacy work with patients with Mitochondrial Disease.

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I was finally able to meet Brittany at the United Mitochondrial Disease Foundation’s National Conference in 2009.  We talked about service dogs, her beautiful voice, her passion to help others.  She was truly one of a kind.

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September 6th, 2009 – the world forever changed.  Brittany Wilkinson – a brave warrior who battled and courageously faced Mitochondrial Disease with astounding courage and grace – was taken from this earth because of a negligent medical staff who ignored her pleas for help after a routine procedure (you can read more about this tragic story here).  And, while how Brittany died is certainly an important thing to discuss (saved for a later blog post), I’d rather tell you who she was and how she lived.

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Brittany was always a bright and vibrant individual.  She loved Jesus and devoted her life to being a disciple for Him.  She was a beautiful Spirit that talked to The Lord daily and was quick to forgive and ask forgiveness.
No matter how she felt physically or emotionally, she was selfless – always putting others first, no matter how much pain and weakness she had.
She was a pure spirit – honest, loving, kind.   She never went to bed upset, and always wanted to make things right…she never held a grudge.
She loved babies and animals.  She was smart and considerate.
She was a great daughter and sister and auntie to two sweet precious little ones.
Most importantly, she devoted her life to bringing souls to the Kingdom and helping others.

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She was a voice for so many – she wanted to find a cure at all cost. She was a leader for her cause: Mitochondrial Disease and was a Youth Ambassador for the United Mitochondrial Disease Foundation. Her determination and drive created the “Brittany Wilkinson Mitochondrial Research and Treatment Act.”

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I echo the sentiments of what her mother said, “I could go on and on (about Brittany), but it’s all true…and that’s why she left a hand print on every heart.”

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Today, my heart is heavy as I think about all the wonderful things this world is missing out on because Brittany isn’t here…but I also take comfort in the fact that, every life she touched (including mine) can carry on her legacy and shine her spirit through the things that they do, the lives that they can touch, and the ways in which they can be the voice of change and love in this world.  It is for that reason that I will be dedicating my next album, “Suffering Bleeds Joy” to Brittany’s memory.

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Please take a moment and read about Brittany’s life and her family’s efforts HERE.

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I challenge each and every one of you to carry a piece of Brittany’s legacy with them and LIVE life with fullness, love, grace, forgiveness, and hope… just like she did.  If we all did this, I know the world would be a better place.

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Rest in Sweet Heavenly Peace, Brittany Wilkinson…..

1010782_10201072647885937_1657509560_nIn Loving Memory
June 6th, 1991 – September 6th, 2009

Love and Light,
Stefani

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