Tagged: disability

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Wishing Him Gone: My Messy Beautiful

Here’s my messy truth: soon after my son Aidan was born thirteen years ago I wished he would die. Aidan was born with complex medical needs and spent the first three months of his life in the neonatal ICU. When he came home on oxygen and with a g-tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly. It’s such a horrid, shameful thought that I carried...

5

Undiagnosed Children’s Day 2013

Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability. I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough. Nope....

6

Bloggers on Your Marks…

Get set… I believe in the power of story. I believe that change happens when our circumstances become personal and meaningful to others. It’s when you know someone who uses a wheelchair that you are compelled to set up a lemonade stand to buy wheelchairs for kids in developing countries. I believe that stories connect us and help us feel less alone. That moment you read someone’s story and say, ‘Yes, I get it” brings you...

1

Wheelchair Diving

  — 1 — True story: I went to the gym this week with a personal trainer. He asked, ‘You’re 40, right?” I was shocked and offended, even though, yes, I’m 40. I was prepared to DENY DENY DENY when I asked him accusingly, “Why do you think I’m 40?” There was no way he could win that one, right? He replied, “I looked at your chart.” Oh, ok. Rational, researched facts for the win....

11

He’s Famous!!!

This is Liam checking himself out on the cover of Pediatric Nursing Journal. Let me repeat that, HE’S ON THE COVER!!! Oh wait, not only that, HE WROTE THE EDITORIAL in this edition. My baby is a published author!!! I’m not even jealous because I’m so stinkin’ proud of him. Liam had the opportunity to write about his experience as Aidan’s brother. It took about six months… really. The truth is, he doesn’t know what...

7

Community Man

I may have gotten Aidan’s wheelchair totally and completely stuck in the ground at Victoria Arlen’s celebration parade. Fortunately, another mom stopped to ask how she could help. I said, “Well, there was a firetruck in the parade. I really could use some big hunky men in uniforms.” She found someone better… (cue booming echo-y voice) *COMMUNITY MAN! A stranger walked over, said hello to us, and addressed Aidan by name. It just so happens...

7

Perfect Love

You’ll have to wait until tomorrow to meet our fourth Super Hero. Please join me today over at SheLoves Magazine as I share how perfect love casts out fear. If you’re new here read about our life without a diagnosis, and how it effects my marriage, and what I want others to know about my life, and enjoy this little bit of sass. I hope you’ll join us for our journey.

5

Super Mom

As I listened to the stories of Victoria Arlen’s recovery and achievements at her celebration parade, I turned to my friend and said, “Who do you think drove her to swim practices an hour away?” Though Victoria was critically ill for several years, she will manage to graduate with her senior class this year. Who helped her get back on track academically? Who coordinated with the school and took Victoria to countless medical appointments? Who...

5

Super Hero Week

I met four Super Heros this week. For Real. Two of my favorite realities collided – people with disabilities have special powers and I love the Paralympics. Meet Victoria, our first Super Hero. Victoria Arlen is an Olympic Champion, but being a medal winning swimmer is not her only superpower. Victoria was paralyzed at the age of 11 by transverse myelitis (inflammatory disease causing injury to spinal cord) and was in a vegetative state for several years....

9

Best.Decision.Ever

To think I almost missed this: my son, out and about enjoying life. Here’s one thing I can be thankful for every single day without hesitation – Aidan’s power wheelchair. It’s given him independence. And to think I almost said no. No, I don’t believe he can drive that. No, it’s too complicated to be a part of our life. No, it’s just not appropriate. No, Aidan’s not smart enough. I’m so glad Aidan proved...