11 Messages People With Kidney Transplants Have for Their Donors

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In 2014 the United Network for Organ Sharing reported 17,107 people in the United States received kidney transplants. These organ transplants come from both living and deceased donors, but it’s not always easy getting one. As of January 2016, an estimated 121,678 people are waiting for lifesaving organ transplants, and of these, 100,791 are seeking kidney transplants.

So for those who do get a kidney transplant, it’s a big deal, and it often takes years to happen. The Mighty teamed up with American Kidney Fund to ask their Facebook community what they would tell their kidney donor if they could. Here’s what they had to say:

1. “You saved my life!” –Lt Tweet

Wild red poppy flowers at morning sunlight.

2. “Words can’t express the joy, and blessing you’ve given to my family and myself.” —Brenda Letford

3. “God Bless you and your family for thinking of others.” —Ronald Keel

pink bokeh lights

4. “I will be forever grateful.” —David L DeAngelis Jr

5. “We can look forward to our girls’ father-and-daughter dance now.” —Maria Nazareth

Silhouette of father and daughter walking

6. “Mom, since I now have your kidney, does that mean you always know when I’m up to no good…?” —Michelle Mandly

7. “Not a day goes by when you and your daughter are not in my thoughts.” — Susan Rios

Candles on a table

8. “My life has changed for the better.” Margaret Dabilis

9. “I love you with all my heart.” —Nancie E Kaiser Cameron

Heart and lights

10. “I would do anything for her and I am taking care of her kidney.” —Carmen Oyston

Silver lights and diamonds

11. “Thank you.” —Beth A. Townsend-Menchaca

Thank you card and flowers

For more information, visit American Kidney Fund on the web and on Facebook

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To My Son Who Will Read Stories I’ve Shared About Being a Special Needs Mom

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Dearest Charlie,

When you are older and read these stories I’m sharing, I want you to know why I’ve shared our lives with the world.

I love writing, and I love sharing. Naturally, I wanted to start a blog about life as a mom, especially life as a “special needs mom,” but I was scared. There’s a fine line that seems to be crossed often when parents write about their children. I never want to offend you or bring judgment to you or your brothers.

You boys are precious gifts to your father and me, and we are so grateful for the opportunity to love and raise you into strong men. But with every post I struggle. In fact, every day I question how much to share or if I should even share at all. My trepidation lies in the fear of possible judgment toward you and your brothers, and the feelings my writing might bring you as you grow into an adult later in life.

With that said, I strongly believe God does everything for good, and He created you so strong and resilient. It would be a disservice to those around us not to share. Son, I am amazed by you every single day. I knew you were a fighter from the day you were born. I never for one second want you to believe you created a “burden” for me. Being a mom means helping your child through any and all needs. You have a lot of needs right now, but this won’t always be the case. I’m happy to help you along this journey. Your triumphs deserve to be shared. I believe they give others hope and something to look forward to. I want you to look back to see how far you have come and all the feats you have conquered. Your hard work will serve you well throughout your entire life.

Yes, it’s hard, but being a parent to any child has its challenges. You will see one day, and I pray that your father and I prepare you well for that glorious day when you might become a dad. Until then, son, I will continue to share our story to empower and comfort others. This life is amazing, and I’m so glad you are in it with me.

Love always,
Your Mom

Follow this journey on Snips, Snails, and Puppy Tails.

Lead photo source: Thinkstock Images

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To the Classmate Who Called Me ‘Lazy’ Without Understanding What I Went Through

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Dear Classmate,

It’s been over two years since we worked together on that project, but I’ve hardly forgotten about it. My stomach still racks with guilt every time I think about what you said to me: that I jeopardized your grade by not pulling my weight. But now another part of me turns around and says a massive “How dare you.”

How dare you call me lazy and lacking effort when I spent blood, sweat and tears each day just getting out of bed to survive and then worked on leading the project.

How dare you accept my first apology and explanation with grace, and then turn around a month later to point a finger of blame at me as if that never happened.

How dare you assume I didn’t care about getting a degree. I did. And all the steps I took towards that goal were like an uphill battle.

How dare you call me unorganized when I planned everything as much as I could. I told you I don’t know what my day is going to be like until I wake up; such is the nature of my illness.

The point is, I tried my d*mn hardest. I worked my socks off for that project. I did everything I was required to do and more. I felt I went above and beyond the requirements despite a great deal of suffering. I even explained, as much as I felt comfortable with, some of the things I was going through so you might have a better understanding. At the end of the day, for you to turn around and say those things to me was a punch in the gut. Nothing gets to me more than someone calling me “lazy,” especially when they don’t understand what is going on with me. I refused to use my illness as an excuse, but now I feel I can use it. As a reason.

girl in cap and gown
Stookie in her cap and gown.

I should have stood up to you and said all of this, but what did I say at the time? “Sorry.” I apologized for being me — something I should never have done, and something I swear I shall never ever do again. But guess what? I walked across that stage on crutches after a full hip replacement to collect my degree and university class medal two years later. And that was greater and more powerful than any “How dare you.”

I hope you open your mind to people suffering from mental illness and chronic disease. I hope you continue to live your life but begin to understand what some of us are facing. I hope that if you are ever put in this position again, you’ll stop before reacting the same way.

Have a good life. I know I will.

– Stookie

My advice to anyone going through something similar right now would be this. Make sure you maintain good communication with your course supervisors, and that the disability department of your school is up to date and aware of your current health situation. They tend to have experience with similar situations. The important thing to do, no matter how hard it seems, is to try not to take comments like this personally. The moment you start blaming yourself, everything becomes harder. As long as you know you’ve done your best, that’s the main thing. And people who judge you or expect/want you to change are quite frankly not worth your time. Don’t let them tell you what you can and can’t be.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My Past Self — Here's What You Didn't Know on the Day of Your Son's Diagnosis

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Today, the doctors will tell you that your baby boy is missing part of his DNA, and they do not know exactly how this will affect him.

I know you want to meet the news with dignity and grace, because this is not a diagnosis. This is your son, and you enthusiastically accept every part of him.

As you sit in front of the panel of experts, you will be commendably cool and calm, nodding at their carefully-worded responses as your stomach knots and your throat aches. They won’t see the ball of emotion that is rising slowly from within.

You will securely place your beautiful firstborn in his car seat, hop in the passenger side, and wait until your husband pulls onto the highway before, finally, the tears come. You will sob as a sadness takes over that you have no word for.

In the days, weeks and months ahead, that sadness will visit you. It will surround your worries and fears and blur your visions of the future with its salty tears. And the sadness will make you feel guilty, because you never want to feel this way.

I am writing you to say: Everything is OK.

The sadness that is hurting you — embrace it. You are not a bad person for dreading this challenge. This pain is nothing to be ashamed of or hide from. This journey can chew you up and spit you out, pummel you down and lift you up. You may laugh with abandon and cry with despair, sometimes at exactly the same time. I am not going to lie — this is going to be hard.

But…

It will also be the most joyful and rewarding experience of your life. You’ll feel gratitude for the smallest things. You will learn a new respect and acceptance for others. You will help spread awareness of rare disorders and craniofacial anomalies. Your community will come together in such unexpected ways to support your son’s journey.

Oh, and your son — what an amazing person he is. He will continually surprise and delight you with each of his successes. His personality will be wonderful and unique. He will melt hearts and break down barriers wherever he goes. And dear one, he looks happy.

So here I sit, your future self, sending love to you always through this incredible journey and letting you know: Everything is OK.

black and white photo of mom kissing her son
Nell and her son.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What’s Wrong With This Picture — and Why It Matters

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photo of an accessible parking space covered in snow

This image of an accessible parking space mostly covered with piles of snow is what greeted me when I recently went shopping with my children. I drove around and discovered that four out of the six accessible spaces along the front of the parking lot were blocked. Winter Storm Jonas had recently finished slamming a large portion of the East Coast with huge amounts of snow. Many of the areas affected were overwhelmed by the cleanup and had trouble keeping up with the plowing and treating of surfaces. That does not change the fact that a situation like this, especially when it occurs multiple times in the same parking lot, is completely unacceptable. It is also potentially illegal (more on that later). And it made me incredibly angry.

My anger stems from several issues. One: I have seen this happen year after year, although this is the most egregious example I’ve seen. Two: I have experienced firsthand what sort of problems this can cause. I have driven endless circles around a parking lot with a companion in a search for a parking space that would allow them to have space to get their wheelchair out of the car. I have seen the frustration and even pain in their eyes when we have to leave. Three: I see far too many instances in life of those with different abilities being marginalized by the general public. I believe they are told time and time again, whether in word or deed, that their needs don’t matter. And this parking lot is currently not meeting the needs of those who have mobility challenges.

Here are pictures from two of the other spaces.

photo of an accessible parking space covered in snow

snow covering accessible parking space in parking lot

What if someone couldn’t travel very far? What if a van with a wheelchair lift pulled up? Even if someone parked in the diagonally lined area of the second picture, there’s not enough space there to both park the van and deploy the lift. There would hardly be enough space to park and place a wheelchair in between cars.

Why does something like this happen? Sometimes people make mistakes or take shortcuts. But there are also conscientious property managers and snowplow drivers who understand why it is important that this not happen. It would be a shame if someone wasn’t able to enter a store and get what they needed simply because of the lack of accessible parking. No one should be made to feel unaccommodated or unwelcome. Even worse, what if someone was injured because of these unsafe conditions?

And then there is the issue of the law. Under the Americans with Disabilities Act, there are regulations that outline the “minimum accessibility requirements for buildings and facilities.” The requirements clearly indicate the correct ratio of the Minimum Number of Accessible Parking Spaces Required per Total Number of Parking Spaces in Parking Facility. Not only that, it states that “One of every six accessible parking spaces, or fraction thereof, must be ‘van-accessible.’” I didn’t count, but it appeared that the ratio was off between accessible spaces and regular spaces. It was a large parking lot, and there was only one space that could accommodate a van with a wheelchair lift.

I am confident, however, that this parking lot was out of compliance with these stipulations: “Where a parking facility serves multiple buildings or accessible entrances, accessible parking spaces should be dispersed to enable people to park near as many accessible entrances as possible. For example: A shopping center has fifteen stores, each with a separate entrance. There is one large parking lot with 1000 spaces. The twenty accessible parking spaces should be dispersed to provide some options for people to park close to the different stores.”

Also, “Accessible spaces must connect to the shortest possible accessible route to the accessible building entrance or facility they serve.” The two unobstructed accessible spaces were on the same end of the parking lot. These spaces were quite a distance from more than half of the shops. This could be too far for some people with mobility challenges, just to name one potential problem.

By the way, the ADA laws even address snow removal. Under “Maintenance” it states: “It is important that accessible features be maintained, and outdoor spaces can be especially challenging because of weather and other conditions. Accessible parking spaces, aisles, and routes should be maintained in good repair and kept clear of snow, ice, or fallen leaf build-up.”

Sometimes accessibility costs extra work and extra money. But that doesn’t mean it’s not important. I totally understand that complying with these regulations can be difficult. As the daughter of a small business owner, I have seen the financial struggles involved with running a company. But when I ask that something like these pictures I posted not happen, I am not being unreasonable. The law agrees with me.

So please, if you are a property manager, business owner or snowplow operator, I ask that you help make sure this kind of thing does not happen. Accessible parking spaces should not be used to store snow.

I wrote this post to help people understand why something like this is important, not to slam snowplow operators, small business owners or property managers. I wrote this for all my friends, both adults and children, who use wheelchairs or need accessible parking for other reasons. They are often frustrated by trying to navigate in a world that was not always designed with them in mind and is at times even hostile toward them. I wrote it for their loved ones. I wrote it for every person who has ever felt “different” or excluded. This incident made me fear for my own son, who has a brain that is wonderfully unique. I worry that his needs will be dismissed with the same icy indifference as those piles of snow. That is why I am angry.

And that companion I mentioned earlier? He relied on a wheelchair for his mobility and was one of the strongest people I have ever met. We spent the majority of our time together one semester when I was in college. Many memories came flooding back as I wrote this. Whenever it snowed, he was stuck in his apartment until all the sidewalks were plowed. He asked his landlord to please clear his walkway first, but it almost always ended up being cleared last because his was the building furthest away from the office.

We lived in a small town, and many buildings had not yet adapted to the new accessibility codes. We once attended a formal event at a local restaurant and discovered there were steps at the entrance but no ramp. I had to help him wheel up the steps backwards: he pushed the wheels and I pulled the handles. Things like that happened more often than you would expect, and my arms got very strong that year. That night he was in a suit and I was in a short dress and high heels and the whole thing made quite the scene. We hated making scenes. It also bothered us because every place open to the public should be accessible, and when they were not, it made him feel like a second-class citizen.

Once we went to a McDonald’s that had a sign in the parking lot stating “Handicap Accessible Van Parking,” and yet when my friend tried to enter the bathroom, he found that his chair would not fit through the door. He spoke to the manager, who apologized profusely and offered him gift certificates. My friend did not accept them; he just asked that they fix the door. I remember the look of anger and humiliation on my friend’s face, but it was the manager who should have been humiliated. It still brings me pain to recall that moment, so I can only imagine how it felt for my friend.

My favorite memory was also born out of a moment that presented accessibility challenges. The time came for my friend to graduate from college. He had worked incredibly hard, and it was his day to celebrate. At the last minute he realized there were a couple of steps leading up to the podium where he was to receive his diploma, and no one had thought about the fact that there was a member of that graduating class in a wheelchair. He mentioned it to the event organizers, and was instructed by the flustered administrators that he was to leave the line when it was his turn and approach the podium from the ground. He did not argue, but also did not agree. He decided he was not going to be the one graduate who did not go across that stage. He quietly employed the help of a friend who was a member of student council and happened to be standing nearby to help with the proceedings. At the last second, they bumped his chair backwards up the steps, and he then went across that stage proudly when his name was called. I saw the school administrators squirm and tense up as it happened, possibly because they were worried about potential injury and lawsuits, but then they hung back and decided not to say anything. My friend looked strong and proud that day. He handled that situation calmly and with dignity, and that moment of honor is what he deserved.

I share all these memories to illustrate exactly why I feel so strongly about a simple, yet not so simple, pile of snow. It feels personal to me, but it should matter to everyone. Accommodation matters. Dignity matters. Obeying the law matters. It’s about so much more than snow.

A version of this post originally appeared on Seriously Not Boring. You can also find Jennifer Bittner at her Seriously Not Boring Facebook page.

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Watch What Happens When This Special Ed Teacher Plays Jason Mraz in Class

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Last year, special education teacher Chris Ulmer earned praise for the awesome way he starts class every day. Now, he’s posted a video showing how he wraps up the week with his kids. Spoiler alert: It’s just as amazing.

Ulmer, 26, who teaches at Keystone Academy in Jacksonville, Florida, uploaded a Facebook video in January and captioned the clip, “Beautiful things happen when you play a Jason Mraz song inside a special education classroom…”

Ulmer explained that when his kids are tired, a little bit of music quickly perks them up, and more importantly, encourages them to cheer on their peers.

“Music in itself can raise a child’s self-confidence and social skills,” Ulmer told The Mighty. “I’ve created a technique to include music in everyday academics which has raised student attentiveness and productivity.”

“I join in to encourage their behavior,” he says in the video below. “Notice how they sing louder in response … Let’s encourage all children to sing a little louder.”

Music in EducationBeautiful things happen when you play a Jason Mraz song inside a special education classroom… Posted by Special Books by Special Kids on Friday, January 8, 2016
 

In another video (below), Ulmer plays the guitar and harmonica for his kids and uses the music as a way to get them to interact.

“Today I discovered that music can break down communication barriers in a special education classroom,” he wrote on Facebook. “And it was beautiful.”

The Beauty of MusicToday I discovered that music can breakdown communication barriers in a special education classroom.And it was beautiful. Posted by Special Books by Special Kids on Tuesday, January 19, 2016

 

Ulmer first caught our attention last year when he launched “Special Books by Special Kids,” a program that will allow students in his special education class to publish their stories in a book.

Be sure to check out the Facebook page for Special Books by Special Kids, which is updated daily.

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