5 Things I Wish I Knew When I Was Diagnosed With Crohn’s Disease

I was diagnosed when I was 22 years old. I was bombarded with information from doctors, the Internet and even advice from people I barely knew. It was a scary and depressing time for me. I was in a new relationship, I had gone through months of testing to finally get my diagnosis and then had to come to terms with knowing there was no cure. There was no “pill” I could take to get me back to feeling well again. Even though each individual experience can vary greatly with Crohn’s disease or inflammatory bowel disease (IBD) in general, there are a few things I wish I knew or at least heard when I was diagnosed.

1. You are not alone.

Reach out to other people with IBD. There are plenty of forums that can connect you to people around the world who understand what you’re going through. This may take time as you adjust to everything that is going on, but I have found a support network is the best tool I have in dealing with my disease.

2. Don’t be afraid to say no.

There will be times you are too sick or tired to deal with people, events and sometimes life in general. Take a time out and relax and don’t feel bad for turning down plans.

3. Stay informed.

Go into your doctors’ appointments with questions and write down answers. Keep in the loop about drugs and research. It’s your body, and you need to stay informed with what’s going on so you can make educated decisions with the aid of your family and medical professionals.

Christine Knicely the mighty.2-001

4. Keep setting goals.

I thought my life was over when I was diagnosed and believed I would never accomplish any of the goals I set before my diagnosis. There are periods of flare-ups and remission. Reaching your goals is still possible — don’t give up!

5. Communication and planning is key.

When you’re not feeling well, trips out can still happen with some planning (usually around bathrooms) and letting the people you’re with know you’re not 100 percent. It may take time to let people close to you know about your disease, but I have found a great group of friends who have stuck by me in sickness and health! There are times I have ditched out on plans or left events early, but they have always been supportive.

Follow this journey on Crohnie on the Go.


Watch Kelly Clarkson’s Response to a Request From a Fan With Down Syndrome

Kelly Clarkson keeps giving the world more reasons to love her.

After her concert on August 25 in Phoenix, Arizona, Clarkson had a meet-and-greet with Angelica Elias, a 19-year-old fan with Down syndrome, E! Online reported. After Elias said hello and gave the singer a hug, she asked Clarkson if the two could sing “Silent Night” together, Elias’s favorite song. Clarkson happily obliged.

On August 26, Carolina Elias Joos, Elias’s sister who attended the concert with her, posted a video of the touching duet on Facebook:

Angelica asked Kelly Clarkson if they could sing ‘Silent Night’ together. If you know Angelica, you know it’s her favorite song. Watch their duet here… #KellyClarkson

Posted by Carolina Elias Joos on Wednesday, August 26, 2015


I’m totally going to cry,” Clarkson says mid-song in the video above.

Joos said Elias was ecstatic after the encounter.

“After the duet, Angelica couldn’t believe it happened,” Joos told The Mighty. “She’d told me before that she wanted to ask Kelly to sing ‘Silent Night,’ and I told her she probably wouldn’t do it because it’s August. They both sure proved me wrong!”

Kelly Clarkson
Photo courtesy of Carolina Elias Joos

How This Father-Son Duo’s Cross-Country Run Is Helping Kids With Disabilities

A father and his son with cerebral palsy who pledged to run across the country to support kids with disabilities are rapidly approaching their big finish.

Shaun and Shamus Evan’s journey really began in November 2013, when the two won a 45-mile ultramarathon together, the Evans family, who live in Galway, New York, wrote on their Facebook page. This would be an impressive feat for anyone, but this accomplishment was extra special — Evans’ son Shamus, then 7, has limited mobility due to cerebral palsy. Evans pushed him in a wheelchair, dubbed the “running chariot,” for the duration of the race.

Quickly after the race, Shamus began asking his father when they could complete a cross-country run, and nearly two years later, his dream is becoming a reality. On July 4, 2015, the Evans family embarked on a 65-day, 3,200-mile run across the United States, The Mighty reported in July.

As of Tuesday, August 25, Evans and Shamus, now 9, had covered about 2,970 miles with Evans pushing Shamus in his wheelchair nearly the entire time, Runner’s World reported. They’d made it all the way from Seattle to Bellefonte, Pennsylvania, averaging more than 50 miles a day for 53 days straight, according to the outlet.

Evans and Shamus on the road. Photo via the Ainsley’s Angels Power 2 Push Facebook page.

As if completing an ultramarathon a day for approximately two months wasn’t enough, the Evans family turned their journey into an incredible mission. As of August 27, Evans and Shamus have raised just over $100,000 to support Ainsley’s Angels of America, a group that works to include children with special needs in endurance events. They’re also donating racing wheelchairs like Shamus’s running chariot to children with disabilities around the country.

On August 25, Evans donated the 20th wheelchair of the trip to 8-year-old Dominic Sauter in Bellefonte, Pennsylvania (video below). Dominic hadn’t been on a hike in three years because he’d grown too heavy for his dad to carry him, Runner’s world reported.

Early next week on September 1, the father-son duo will cross into New York City, where their incredible trip will come to an end. But the difference they’ve made for families around the country — and their lifetime of advocacy — will continue on.

“It’s all about promoting inclusion, and giving that gift of mobility,” Evans says in the video below.

Take a look at some photos from throughout their journey below:

Screen Shot 2015-08-27 at 12.17.20 PM
Shamus leads the way on foot as the team crosses the halfway point in their journey. Photo via the power2push Instagram page.
Screen Shot 2015-08-27 at 10.40.02 AM
Evans (back) and Shamus (center) present two running chariots to children in Ohio. Photo via the power2push Instagram page.
The Evans family on August 26, day 54 of their cross-country run. Photo via the Ainsley’s Angels Power to Push Facebook page.
Evans greets a supporter on the road. Photo via the Ainsley’s Angels Power 2 Push Facebook page.
Photo via the Ainsley’s Angels Power 2 Push Facebook page.
Photo via the Ainsley’s Angels Power 2 Push Facebook page.

Learn more about the Evans’ cross-country run in the video below, and watch Evans present the 20th wheelchair of the trip Dominic Sauter at 1:28.

To keep up with Shamus and Shaun Evans as they finish their journey, check out their Facebook, Twitter and Instagram pages. To support their team and Ainsley’s Angels of America fundraiser, head here.

How My PTSD Diagnosis Gave Me Strength

I’m 46 years old living in Miami, Florida, and in 2013 I was diagnosed with Complex post-traumatic stress disorder. For 17 years I had been verbally and psychologically abused by my husband.

But up until 2012, I was fine. I was facing each instance of abuse individually and surviving. My brain had not compounded them all together. Instead I would bury each instance, neatly packing it away before the following day. It worked for many, many years. Over time, it was like I had forgotten all the traumatic events all together.

But suddenly in 2013, I began to have flashbacks of past experiences coupled with intense feelings of fear, rage, pain, helplessness and hopelessness. I can’t stress enough the word intense. These feelings were overwhelming and took over my entire body. I was frozen as the flashbacks came, and when they passed I could still feel them in my body.  

It’s hard to describe, but I’ll try: Imagine the closest person to you dying. Now imagine them dying again. Now imagine, to you, they die every day. When the phone rings, it’s not them when it should be. You want to call them three times a day, but you can’t because they’re not there. You set the extra plate on the dinner table out of habit. It feels just as real, even when it’s not happening.

Day after day, month after month, the flashbacks came with a vengeance. I could recall every word he said and every gesture he made as he ripped into me. These were the early symptoms — later came the anger. Then the,”How could he say/do this to me.” Then the need to resolve it, but the inability to do so. In desperation, I reached out to my sister one day and said, “Why am I feeling like this now? I don’t remember being this torn up when this was all actually happening. Why now?” She took it well and simply said, “Apparently you thought you had forgiven him for those things, but you didn’t. Now they’re coming back to haunt you.”

I went to go see a psychiatrist, and it took about a minute for her to tell me I had Complex-PTSD. I should have been mortified, but I was relieved. She put a name on what I was experiencing. I went home and poured myself into the Internet to get a better idea of what was happening to me. 

I put my whole family together and broke the news. Some understood, most didn’t. PTSD is mostly spoken of in regards to soldiers. But they were prepared to do whatever it took to support me when the time came. After many years the time did come to face my relationship. I simply said, “I have filed for a divorce and you will be served.” I was terrified as always, but courage only comes in times of fear. Having the diagnosis of C-PTSD gave me the strength and the courage to do what I hadn’t been able to do for 18 years: leave. The diagnosis didn’t break me, it made me. It gave me the name Survivor. It gave me the identity Fighter. It gave me a new motto: Never again.

When my doctor asked me if I was still suffering from the abuse, I could answer, “Not anymore.”  She said, “Good, because if you are still suffering from the abuse, you cannot be treated.”

Then she asked me if I was still experiencing pain. “Yes,” I said.

“Good,” she said. “I can work with pain. It means now you’re consciously aware of the trauma he’s brought into your life. You are ready to confront this head on by letting the pain in, accepting that someone has wronged you, owning it and changing it. You cannot change what you cannot confront.”

That changed everything.  

To My Daughter With Down Syndrome on Your First Day of Kindergarten

Dear Addison,

Today you enter kindergarten. You — a big, beautiful, grown-up little person — begin your educational journey.

It’s hard to believe you’re the broken baby I cried over in the NICU. It’s hard to believe your bouncing ponytail, infectious smile and sparkling blue eyes are in my life when I remember all too clearly placing a trembling hand on my swollen belly six years ago, scared at what Down syndrome would mean for the baby I had yet to meet.

Because I was scared. Terrified, actually. I received your diagnosis with bitter tears and twisted it to mean whatever my prejudices wanted it to mean. But I was wrong. There was nothing to be scared of. In the past five years, you have surprised me with your brilliance and ability, delighted me with a beautiful personality and humbled me with how blessed I am to be your mother.

Now as I think of you sitting tall in your seat marked with your name, listening to your teacher, learning alongside your peers and being a kindergartener, I am once again terrified. How will you do with the academic side of things? What if you become isolated from your peers because of your difference? What if you don’t like kindergarten? What if you are made fun of and I’m not there to protect you from it? What if you struggle to follow classroom instructions and rules? What if you don’t click with your new teacher? What if you fall too behind in the academics to successfully remain in the mainstream classroom?

You have been begging to go to school all summer, but yesterday when you realized that “school” was no longer your safe preschool classroom with the teacher you love so dearly, I could see you processing this all a bit differently.

Deanna Smith the mighty.2

I am terrified. This is a big change. For a big girl. For a big step toward the rest of your life.

And so I fall back on what you have taught me so far: Do not, I repeat, do not underestimate you. And so I won’t. I have utmost faith and confidence in your ability to adjust to this new thing. To not only adjust and survive but to thrive while doing it. I know you’ll carry that infectious smile and those sparkling blue eyes into the classroom with you. How can those other kids help but love you, too?

Remember what we have been working on: kind hands. Kind hands. Treat the other students the way you want to be treated. Obey. Do not just run off whenever you feel like it. Wash your hands. Frequently. And if you don’t get something the first time? Try again. And again. And as many times as you need to to learn new things because it’s worth it. (What am I talking about — you taught me that last point.)

I know you can do this. It might take a while for you to figure out the new classroom and the new expectations of kindergarten, but you’ve got this. (And I’ve packed your favorite chocolate milk in your lunch to help renew your superpowers halfway through the day.)

I love you, baby girl, and I’m so proud of you. You are amazing.

If you have such an awesome time at school that you forget about boring ol’ Mom, no worries. I’ll be the one standing over here in the cheerleading outfit holding pom-poms and yelling your name. (And remember who restocks the chocolate milk!)

Have a beautiful first day of the rest of your life. I can’t wait to hear all about it.



Deanna Smith is the author of “Motherhood Unexpected,” a Christian fiction novel exploring an unexpected diagnosis, an unexpected pregnancy and an unexpected source of healing.

Follow this journey on Everything and Nothing From Essex.

There Are 2 Sides to Every ‘Can’t’ for My Son With Autism

Some days, I see this:

He can’t make himself a snack. I have to prepare and supervise every meal.

He can’t stomach new foods. I have to cook the same limited menu.

He can’t use a knife. I have to cut up his food before he eats.

He can’t hang out with friends on his own. I have to hover and facilitate.

He can’t shave his face, brush his teeth or wash his hair independently. I have to take over those tasks.

He can’t match his clothes. I have to lay them out for him.

He can’t organize his time. I have to micro-manage every step to get him ready for his day.

But, this is also true:

He can’t make himself a snack — because I prepare and supervise every meal.

He can’t stomach new foods — because I cook the same limited menu.

He can’t use a knife — because I cut up his food before he eats.

He can’t hang out with friends on his own — because I hover and facilitate.

He can’t shave his face, brush his teeth or wash his hair independently — because I take over those tasks.

He can’t match his clothes — because I lay them out for him.

He can’t organize his time — because I micro-manage every step to get him ready for his day.

My son can’t do many things — because I still do too much.

He can’t do them — because I have not taken the time to teach him.

He can’t work through his mom-enabled challenges — until I make it a priority to get out of his way.

He can’t learn to do these things — without strategic teaching and creative modifications that take his sensory, fine motor and communicative needs into account.

He can’t complete these tasks independently — without time and patience and belief.

He can’t do these things today — but not because he can’t.

He just can’t — yet.

Robin LaVoie the mighty.1

Follow this journey on Stay Quirky, My Friends.

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