Watch the Magical Moment this Legally Blind Mother Sees Her Newborn for the First Time

459
459
1

Kathy Beitz, 29, from Guelph, Canada, has a degenerative eye condition called Stargardt disease that’s left her with only a little bit of blurry peripheral vision, Guelph Mercury reported. She’s considered legally blind. Stargardt disease is a form of inherited juvenile macular degeneration that causes the loss of central vision and also affects the ability to see color, according to Fighting Blindness.

Beitz never expected to be given the opportunity to see her own child, but thanks to a special pair of glasses, she was able to look closely at her son, Askel, after his birth last December, according to Guelph Mercury.

A company called eSight developed the glasses, which work by combining camera display technology and advanced computing to deliver a real-time video, according to the eSight website. The user can change brightness or increase zoom until they can see, according to eSight’s website. The product is designed for people with low to very slight vision, but doesn’t work for the completely blind.

I think he looks like us,” Beitz says in the video below. “For the first baby that I actually get to look at, it being my own is very overwhelming. Even to get to look at my husband look at him is such a good feeling.”

See the touching moment in the video below: 

h/t Reddit Uplifting News

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

459
459
1
TOPICS
JOIN THE CONVERSATION

RELATED VIDEOS

Why I’m Thankful We Didn’t Know About My Daughter’s Disabilities Before She Was Born

429
429
0

DSC_0254-3 If I knew then…

that Ashlea would need a kidney transplant…

that she would have multiple disabilities…

that our lives would never be the same…

would we have done things differently?

I’m sad to say that we may indeed have done things differently. If we’d been told before the girls were born that Ashlea was going to have cerebral palsy, a vision impairment, an intellectual delay and kidney failure, we would have assumed she would have no quality of life and we may have requested she not be resuscitated at birth. If we’d found out that same information in the first few days of her life, we may have decided to withdraw care (I know this is a contentious issue, but when our baby required full life support and was in complete renal failure, it was presented to us as an option.).

But we didn’t know.  

Thank God we didn’t know.

What we didn’t know is how wrong we were to assume that someone with a disability would have no quality of life.

What we didn’t know was that having a child with serious disabilities would be a blessing.

That we would love Ashlea just as she is

that she would help us see what is really important in life…

that we would be OK with not getting the fairytale ending.

What an eye opener it’s been to live with Ashlea and her disabilities. If we’d known, we possibly would have made different choices. But we would have robbed ourselves of the joy and the delight that is Ashlea. We would have robbed ourselves of the chance to have our eyes opened, to see what is really important in life.

Even if someone had told me back then that I would have a child with severe disabilities and that I would be OK with it, it wouldn’t have helped. Because I wouldn’t have believed them.

Some things you have to learn by experience.

Thank God we didn’t know.

This post originally appeared on Thinking of Starting a Blog.

For all of January, The Mighty is asking its readers this question: 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

429
429
0
TOPICS
JOIN THE CONVERSATION

A Sign in Target Changed the Way I View My Son’s Autism

798
798
1

2014 brought so much change into my little world. It’s amazing how life can knock you off your feet and place you in a whole new galaxy when you least expect it. I should be accustomed to these life-altering events by now.

Almost 11 years ago, I held my 9-month-old daughter in my arms and watched her heartbeat stop on a hospital monitor. It still gets me… remembering that moment. If I allow myself to dwell on the memory more than a few seconds, my eyes will quickly fill with tears and my heart clenches. It was so long ago, yet it feels like wasn’t.

Losing Lexi changed me… for the better. I felt closer to God, closer to my husband, closer to friends and family and very much aware of every blessing and beautiful moment in life. Don’t get me wrong, I hurt badly for a long time and I still have flashbacks that cripple me. It’s true. Nothing is worse than losing a child, but that doesn’t mean there aren’t a lot of tough things in life. I’ve never been one to think that my bad is worse than your bad.

When Drake was born, in 2011, I couldn’t properly express the joy I felt knowing that I was finally going to be a mother again. Every ultrasound and echocardiogram told us we were having a healthy baby boy. But I knew Drake was autistic a year before he was diagnosed. I’m the classic Google maniac and knew everything about autism before I expressed my fears to anyone else. I had to reassure myself before I could even utter the words. I was scared — so very scared.

When Lexi was with us, I knew what needed to be done to fix her heart. It was never promised that she would survive, but we knew the steps needed to keep her alive. There were specialists who knew what was wrong and what to do about it. Six to nine medications a day kept her heart functioning. Autism is different. There is no magic pill. Drake can’t have brain surgery to get rid of it. For this I am thankful. I don’t want to lay another child down on an operating table for a major operation ever again.

I’m not yet one of those autism parents who thinks autism is a wonderful part of who my child is or will become. I’ve read so much on this disability, and I’m often in awe when someone says they wouldn’t change their child if given the chance. I wouldn’t change Drake’s sweet spirit or his love for simple things, but I would change him socially. Why? Because people are mean. I don’t want anyone to ever hurt my baby. If Drake continues to be as happy as he is right now and he learns to live independently, I can honestly say I’m OK with him having autism. Yet, here I sit, without my crystal ball.

I don’t know what the future holds, and this is the only part of autism that I abhor.

In the first few months after Drake’s autism diagnosis, I went from a state of constant worry to “mama on a mission” mode. I’ve put my teaching career on hold and made many other sacrifices to ensure Drake receives the therapy he needs. My husband and I have worked as a team every step of the way, and I’m so thankful. Every decision I make is based on what works best for Drake. He has intense ABA therapy four days a week and weekly occupational and speech therapy, which seem to be working. I cannot express how thankful I am for these people who work hard to help my child succeed. They love him and that makes me love them.

Please understand, Drake is not a difficult child. Yes, he’s currently nonverbal, and he has a few things that drive me up the wall (teeth grinding). Otherwise he’s so sweet and accepting of most situations. He isn’t rigid about routine, and although he’s awkward socially, he loves being around people. He does get uncomfortable in certain situations, but he tries so hard to cope most of the time. He’s happiest at home or in predictable environments… but aren’t we all? I’m so in love with Drake’s emerging personality, and I cannot wait to see how much progress he is going to make this year.

Recently I had an epiphany while in Target. I saw this amazing wooden wall hanging that read, “You are my greatest adventure.” I stood there, awestruck.

Drake is my greatest adventure. Autism is an adventure. Life is an adventure. I bought this piece to hang in my home. While this adventure may not be the one I thought I wanted… I’m ready for it.

This year I hope I can embrace this new adventure I believe God has set before me. Despite who I am and how often I fail, He always shows me such an exciting life. Some of these adventures are scary; yet He always shows me the color, beauty and wonder. I believe God opened so many doors for my family this past year. I can only smile when I think of all the things He will do as we continue this adventure with Drake.

I’m ready for the thrilling, exciting, daring, knock-you-off-your-socks moments. I cannot wait to look back on this adventure, sigh and say, “Wow, what a ride.” I’m ready for that moment. No, I do not want time to fly by, but I’m ready to know that everything was worth it.

This post originally appeared on “Walking With Drake.”

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

798
798
1
TOPICS
JOIN THE CONVERSATION

How an American Girl Doll Inspired This 11-Year-Old to Change the Way We View Disability

215
215
1

Melissa Shang knows firsthand what it feels like to grow up without being able to relate to characters in the media. The 11-year-old has muscular dystrophy, a group of diseases associated with weakness and loss of muscle mass. Books, TV shows and movies geared toward kids rarely feature people with disabilities, and those that do tend to include them as sidekicks rather than main characters.

So Melissa, 11, is embarking on a project to raise awareness about what it’s like to live with a disabilityShe and her sister, Eva, are coauthoring a book whose protagonist is a young girl with muscular dystrophy, which they promote in their awesome TED Talk below.

Melissa and Eva’s project began with Melissa’s love for American Girl dolls. One morning, Melissa expressed to Eva that she wished the company would release a “Girl of the Year” doll with a disability so she could relate to the character’s story. The sisters saw this as an ideal opportunity and started a Change.org petition to convince the company to do just that. The petition garnered more than 140,000 signatures, but American Girl didn’t respond, according to Mic, and instead chose “Grace the baker” as their 2015 selection.

That’s when Melissa and Eva took matters into their own hands and decided to write the book themselves. They hope to raise enough money to self-publish through an updated Change.org petition and a Kickstarter campaign.

“As my sister proved, people with disabilities can be protagonists,” Eva says in the video below, “and can change the world just as much as anyone else can.”

Watch their inspiring TED Talk in the video below.

h/t Mic

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

215
215
1
TOPICS
,
JOIN THE CONVERSATION

This Punk Band of Musicians With Intellectual Disabilities May Soon Perform In Front of Millions

222
222
1

Pertti Kurikan Nimipäivät, better known as PKN, is a Finnish punk band whose members are all middle-aged men with intellectual disabilities.

kovasikajuttu_still1_photo_by_JP_Passi

The band, formed in 2009, gained a lot of popularity after a documentary about them, called “The Punk Syndrome,” was released in Spring 2012.

The documentary followed band members Pertti Kurikka (guitar), Kari Aalto (vocals), Sami Helle (bass) and Toni Välitalo (drums) as they grappled with their newfound notoriety, as well as the challenges living with disability present.

We bring a different kind of perspective into punk music; it’s our perspective,” Helle, the band’s bassist, said in a press release. “We’re different, we’re four mentally handicapped guys so our perspective on the world of punk is a little different.”

kovasikajuttu_still4_photo_by_Marianne_Heikkinen

kovasikajuttu_still3_photo_by_JP_Passi

kovasikajuttu_still2_photo_by_JP_Passi

Screen Shot 2015-01-21 at 10.15.10 AM

Recently, PKN has made it to the Finnish qualification round of the widely-popular singing show, Eurovision Song Contest, the band’s management told The Mighty. If they win the national competition in February, they get to represent Finland at the Eurovision finals in Vienna in May.

The Eurovision Song Contest has been ongoing in Europe since 1956. It boasts an estimated 180 million viewers every year, according to its website.

Stay tuned to see if PKN makes it to the big stage this May.

Check out the official trailer to The Punk Syndrome below:

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

222
222
1
TOPICS
JOIN THE CONVERSATION

If Everything Happens for a Reason, Why Do I Have a Mental Illness?

487
487
0

IMG_7284 (1) My whole life has been shadowed by my inner self reminding me that I was different.

The little voice inside my head telling me to fit in just never went away, even when I thought I’d shoved myself into a puzzle I didn’t belong in. It was like squeezing my foot into a shoe two sizes too small, but I had no other choice but to wear it. All of my energy was devoted to putting effort into fitting in with the world.

Until the day I got my diagnosis.

When I was told I had Generalized Anxiety Disorder (GAD), it confused me more than anything. I felt comforted by the fact that my feelings now had a title and I wasn’t an outcast, but I didn’t know what GAD was. I’d associated anxiety with a feeling — like when someone who hated to fly started getting anxious about getting on a plane. I had no idea anxiety could be a disorder. So when I was diagnosed with something I essentially had no background on, I took it with a grain of salt. I barely reacted to it. I never realized how much baggage would come along with having a mental disorder.

If I could go back to the day I was diagnosed with GAD, I would tell myself living with it won’t be easy, but everything will be OK. Within the year of my diagnosis, I experienced depressive episodes; I started learning about the stigma, realizing that some people were intimidated to have a relationship with me because they thought mental illness brought along too much work for them. I was always told everything happened for a reason, but back then, this reason I just couldn’t justify.

Now I believe everything really does happen for a reason, even if that reason emerges years down the line. I would have let myself know that having “disorder” seemingly written across my forehead was given to me for a reason. I found myself talking openly about my illness more and more, coming to the conclusion that I was a voice for those too scared to speak up. Knowing how many people may judge and back away because of my disorder is disheartening, but I’ve found the important people are the ones who stick by my side through anything.

I stumbled upon a quote the other day — a quote that accurately depicts the day I was told I have GAD.

“Can you remember who you were before the world told you who you should be?”

My answer to that? No. I cannot imagine my life without my diagnosis. But while I may have a mental disorder, I’m not my disorder.

For all of January, The Mighty is asking its readers this question: 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

487
487
0
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.