The Doctor’s Words That Flipped My Perspective on My Son’s Disorder

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July 4th weekend always starts off with a bang of some sort, usually fireworks. For my family, though, the bang of Independence Day weekend 2011 was the crumbling of our world as we learned that whatever was wrong with our precious 18-month-old son Andrew would be lifelong, life-altering and likely life-ending.

The weekend was a blur of needles, blood vials, consults, stethoscopes and aching bones from pacing hospital floors. My heart broke with each needle that pierced into my sweet baby’s body. During our final hours in the PICU, we were told Andrew’s blood would be sent out to three different labs for a myriad of tests. 

As I sat there feeling the fear of losing my son engulfing my heart, my mind reeled from realizations and visions of things no parent should ever have to consider. I wondered how in the world I’d ever be able to leave that hospital room and walk forward in life knowing my child, the part of my heart I wear outside my body, would likely live a life of pain, both physical and emotional, before he’s taken from me. Then his attending physician spoke the words that flipped my whole perspective: “He’s here now, and he’s happy.”

At first I was taken aback. I didn’t like what those words implied. I tried to brush them off, but they never truly left my mind. Even now, four years and the diagnosis we were most afraid of later, they bounce around my head whenever I think to the future and the darker times it holds. “He’s here now, and he’s happy.” It’s the phrase that snaps me back into the light. That simple sentiment reminds me this little boy needs me to appreciate today. Right here, right now is all any of us has. I cannot — I will not — spend what precious time I have with this boy drowning in the unjustness of what’s to come. I don’t want to miss the blessings of today — the giggles a falling tower of Legos brings, the awe of hearing him read his first whole sentences, the sweet smell of his head when I’m carrying him up the stairs. I’d miss all of that if I allowed myself to wallow in anticipatory grief.

In 1 Thessalonians 5, Paul tells us to “Rejoice always, pray continually, give thanks in all circumstances.” Giving thanks for Duchenne? How do I do that when the disease is breaking my son’s body down? By remembering those words: — “He’s here now, and he’s happy” — and falling on my knees in gratitude to God for this child, for this day, for these blessings. To get to have Andrew for even a few years? How lucky am I!

Follow this journey on Homemade Tater Tot.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a comment that stayed with you. How did you respond to it? 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 Share Your Story page for more about our submission guidelines.

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To My Cousin Who Passed Away From the Same Disease My Son Faces Now

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Hello, Lexi. I don’t know if you remember me, but we met twice before we had to say our last goodbye. Your mom is my aunt, and when she had you, I first learned of spinal muscular atrophy (SMA). I remember your room was filled with machines that sustained your life, and you required intense 24/7 care. The rest was a blur, but I know you were loved by so many.

Little did I know that not long after your passing, I would know more about you than I had ever dreamed. My son was born less than a year after you had passed away. We knew something wasn’t quite right when he was a few months old. I remember talking to your mom and describing his symptoms to her. Knowing that you were so special, I felt connected to her. It wasn’t long before our worst fears were confirmed, and my son had the same devastating disease that took you. Suddenly, everything I knew of you became everything I knew of SMA. Your mother’s reality became mine.

Brittney Mosher the mighty.2-003

Spinal muscular atrophy is a genetic neuromuscular disease that affects the ability to sit up, walk, talk, breathe and swallow. “One in every 50 Americans is a genetic carrier,” according to Cure SMA. When two carriers have a baby, that baby has a 25 percent chance of having SMA. This disease is considered rare but not for our family. Your mother and father are carriers just like my husband and me. We have a daughter who we now know is a carrier as well. The family refers to you as our angel and my son as our warrior.

In the early diagnosis of my son, no one I personally knew understood what I was going through like your mother. I asked her raw questions and I know it brought up painful memories. A world she thought she would never see again was in front of her. You fought hard but your battle was short. As your mother continues to learn to live without you, without SMA, I learn to live with it. I’ve become integrated into the SMA world for almost two years now.

If it weren’t for you I wouldn’t have known our fate so soon. Because of you, I was able to prepare, accept and fight for my son. You have been my light, and your mother has been my guide. I think of you every day as I care for my son, as your mother cared for you. I miss you and wish I would have known you better. I wish you could have met my son. I wish you could be here so we could fight our unfortunate genes together.

In memory of Alexis Hazel Richardson (7/22/12 — 12/8/12).

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Kenneth Cole Posts Controversial Billboard About Guns and Mental Illness

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Early last week, fashion designer Kenneth Cole tweeted a message about gun reform, and some mental health advocates are outraged.

“Over 40 million Americans suffer from mental illness,” the billboard message reads. “Some can access care…all can access guns.”

Advocates say this perpetuates the stereotype that people with mental illness are violent.

“We’re sick and tired of the stigma associated with our illness,” Dolores Sanchez, mental health advocate and founder of the website Mental Health Justice told The Mighty. “If they’re trying to send the message that we want more accessibility to mental health care, this is a warped way of promoting it.”

In a blog post featured on her website, Sanchez called the billboard a “sensationalized portrayal” and quoted Dr. Jeffrey Swanson, a professor in psychiatry and behavioral sciences at Duke University School of Medicine, who said, “If we were able to magically cure schizophrenia, bipolar disorder and major depression, that would be wonderful, but overall violence would go down by only about four percent.” Ultimately, Sanchez wants the billboard to be taken down and for Cole to issue an apology to the 40 million Americans who live with mental illness.

The Brady Campaign, a non-profit that advocates for gun reform, retweeted Cole’s billboard. Brendan Kelly, a representative from the Brady Campaign, said by promoting the billboard, they only meant to reiterate the beliefs of their campaign.

“[The decision to retweet] was simply a reflection of our firm belief that mental health care should be more readily accessible than guns, not to shift any blame to mental health,” he told The Mighty in an email.

But Leo Briones, communications director for Mental Health Justice, told The Mighty this message is like any other subtle, discriminatory act.

“What you’re insinuating is that there are 40 million suffering from mental illness, and if they get a gun they’re going to hurt you,” he said. “It’s an outrage.”

Briones pointed out someone with a mental illness is more likely to be a victim than a perpetrator of violence. He also criticized the nature of the message — a billboard is meant to get people’s attention, fast. No matter Cole’s intent, simplifying an issue and targeting a population of people to get an emotional response is socially irresponsible, Briones said.

The next day, Cole responded to accusations that his message stigmatized those with mentally illness, taking to Twitter to defend his ad.

His message reads, “This ad not meant to further stigmatize those suffering from mental illness community in need and already under-served.”

Creating an environment where people can talk about mental illness without shame, says Sanchez, is a more productive way to start the conversation about gun control and mental illness.

“We’re starving for good care, and there’s a real need and an appetite for a discussion,” she said. “But when you start that discourse with stereotypical, illogical and misleading connections, there’s no way it’s really helping people.”

Sanchez encourages others to reach out to Kenneth Cole, by contacting his organization and joining the already established boycott movement, #‎BoycottKennethCole‬. She’s also asking the Brady Foundation to disavow themselves from the billboard.

What do you think? Tell us in the comments below. 

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10 Things I Wish I Could Tell My Childhood Self About Cerebral Palsy

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Now that I’m an adult and am a little bit more mature, I look back on my life and wish there were some things I would have known or done as a child growing up with cerebral palsy (CP). So here are 10 things I wish I could tell my childhood self:

1. It will all be worth it.

All of the surgeries, the pain, hospital stays and doctors’ visits: It’s all going to be worth it. You’re going to benefit from all of this in more ways than you can think about right now. You need to look towards the future and understand your life will be so much better because of what you’re dealing with right now.

Karina Siriano the mighty.3-001
My childhood self.

2. Don’t be afraid to go after what you want.

You have so many dreams and big ideas. Don’t lose sight of them and go for it! Otherwise, you’ll look back and wish you had acted on those dreams earlier.

3. Don’t limit yourself.

Just because you have CP doesn’t mean you should limit yourself. Start getting that into your head now, otherwise you’re going to miss out on some pretty awesome stuff in life. And that will be nobody’s fault but your own.

4. Don’t be ashamed or embarrassed about who you are.

Yes, you have CP. So what? Be yourself. Do what you love and don’t apologize for who you are.

5. Learn to be approachable.

Sometimes people are going to view you differently at first. That’s not fair, I know. But that’s just how it’s going to be. So you need to learn to be approachable. Don’t seem standoffish because you are offended by the way people perceive you. Instead, smile and be friendly. It’s going to make such a difference.

6. You’re not less of a person.

Just because you have CP, that doesn’t make you less of a person. You’re just as important as everybody else.

7. It’s OK to laugh at yourself.

You’re going to fall. A lot. You will trip. You will stumble. In crowds, in hallways, in the middle of the school courtyard (where everyone can see). It’s going to be a pretty normal occurrence in your life. You can laugh about it. It’s OK. Sometimes, when you think about it, some of your “incidents” are going to be pretty hilarious.

Karina Siriano the mighty.2-001
Me as an adult.

8. Stand up for yourself and be an advocate for others.

There will be times when people are going to openly gawk. They’ll be rude and make snide comments. Don’t let them get away with making you feel bad about yourself. Stand up for yourself and be proud of the person you are. Be an advocate for others, too. You are in a pretty important situation. You have the ability to be an advocate for those who might not be able to be one for themselves. So stand up for them, too, because you can.

9. Don’t take your life for granted.

It may not seem like it now because you’re just a little kid and can’t really comprehend why you have to go through the things you do. But you’re so incredibly lucky and blessed to have the life that you do. You have a disability, yes, but things could have been so much worse. Don’t take this life you’ve been given for granted. You’ve been given it for a reason. So go out and live your life to the fullest.

10. And lastly, love yourself.

You are different, but you are beautifully different. Remind yourself of that now so that you’re not still dealing with self-esteem issues when you’re an adult. You are loved and you are important. Never forget that.

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5 Ways I Stay Positive Living With Epilepsy

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Epilepsy has one job, and one job only. To attempt to make our lives a living hell. We have one job, too, as epilepsy fighters. To return the favor. You see, I refuse to allow epilepsy to steal, kill and destroy my joy. Sure, epilepsy is here and it’s going to be here for a time. However, I’ve got my life to live and I’m going to live it to the fullest regardless of this condition. Yeah, it might get in the way from time to time and I may need to make some adjustments, but that’s OK with me.

The challenge I’m presented with here is an opportunity to grow and become stronger as a person. The more difficult the challenge, the greater opportunity for growth and strength.

This motivation and inspiration has propelled me forward throughout my entire journey. Becoming diagnosed at age 22, just four months after marriage was not what I was planning or prepared for. This challenged me to the very brink of what I believed I could endure. However, I believe I overcame because I not only have God at the center of my life, I have an incredible husband and an amazing family and I absolutely refused to give up even though my life had been suddenly turned upside down.

From the beginning I’ve reminded myself and shared with others: “Don’t let epilepsy defeat you, let it inspire you.”

5 ways I enjoy staying positive living with epilepsy.

1. Counting blessings

I could spend all my time thinking and reflecting on how terrible and awful my situation is. But you know what? My blessings far outweigh my burdens. So I’d rather think and reflect on that more often. It causes me to smile, brightens my mood, motivates me, inspires me, gives me purpose etc. etc. etc.

2. Pursuing exciting hobbies and interests

Just because a diagnosis comes into my life doesn’t mean life is put on hold. This doesn’t mean life is over. This doesn’t mean I cannot pursue my hobbies, interests, goals and dreams. As a matter of fact, it causes me to be all the more ambitious to want to achieve my goals, in a smart and cautious manner of course. I will live my life, and I will not allow epilepsy to prevent me from living life to the fullest.

3. Trusting and believing in God

Since becoming diagnosed with epilepsy my relationship with God has grown stronger than it’s ever been in all my life. Growing up in a Christian home, marrying an amazing Christian man with an incredible Christian family, I can say what a tremendous blessing to be immersed in God’s love. I believe whatever His plan is, I know I can have complete trust and everything will be OK.

4. Standing together with family, friends, fellow epilepsy fighters and supporters

There are so many people who continually inspire, motivate and encourage me on a daily basis throughout this journey. It’s a beautiful sight to see, us all united in strength rather than shattered and scattered in defeat.

5. A daily reminder to myself: “Today you will rise above epilepsy!” 

It’s so important what you tell yourself. Self speak will either hurt you or help you. I never want to tell myself anything that will hurt me. I do my best to avoid this. I’m not perfect. No one is. However, this phrase right here is a great way to start a day.

What methods do you use to stay positive when life decides to take an unexpected turn down a rocky road?

Follow this writer on The Epilepsy Journey.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Watch This Woman Answer the Internet’s Weird Wheelchair Sex Questions

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Comedian and actress Santina Muha has been in a wheelchair since she was 5 years old, according to the BuzzFeed video below. That means she has a lifetime of experience to share, and share is exactly what she does.

Muha answers questions, offers advice and shares her personal experiences about dating, love and sex. For example, when asked how she has sex, Muha responds:

I don’t understand why this question is so popular. How do you have sex? I mean do you guys walk around while you have sex?”

Watch Muha answer wheelchair-related questions about love, dating and sex: 

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