Dear Son, What Would You Say If You Could Speak?

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What would you say if you could speak for one day?

Would you tell me you love me?

Would you say you were scared, or just so glad that I really cared?

Would you tell me a joke, would you talk to your friends?

Would you tell me what hurt you, or what makes you sad, why you get angry or what makes you mad?

jodie wedmore the mighty

What would you say if you could speak for one day?

Would you tell me what you like, what you think, what you dream?

I just want to know if you are as happy as you seem…

Do you want to speak, are you happy this way?

If only you could tell me, if you could speak to me, if only for a day…

Dedicated to my son who has Phelan-McDermid Syndrome

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To the Man Who Said Something About My Kids’ Behavior in a Restaurant

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Dear Sir,

It’s been a hard 24 hours for my little tribe.

We got very little sleep last night and are helping dear friends of ours move away today.

When you came up to me this morning, I inhaled deep and got that fear pang in my gut like I do every time I’m sure a stranger approaching me is going to complain to me or offer unsolicited parenting advice to me because of my “unruly” children.

But you didn’t do that.

You smiled, leaned in and quietly whispered, “Thank you for teaching your children to behave in public.”

I was shocked. I said thank you, smiled and then, “Ummm, was that sarcasm?” Came out of my mouth before I could stop it. You were kind, though, and said, “No dear, I really mean it as a compliment.” I said thank you again, wished you a good weekend, collected my brood and headed to the pay counter.

I can’t tell you enough how your simple act of kindness brought joy to my soul and tears to my eyes. Because it’s too often that I’m on the receiving end of judgmental comments or glares. You had no way of knowing this, no way of knowing my story or how much your words would really impact me.

chelsea mersereau kids the mighty

You don’t know that my oldest son has invisible special needs that impact him every day. You had no way of knowing that on a daily basis I’m sworn at, spit on, kicked at, yelled at, and have stuff thrown at me by a child I love with all my heart, who can’t control his emotions, especially in sensory-rich environments.

You had no way of knowing all the trauma my kids and I have been through these last 4 years. Separations from their dad, a house fire, being homeless TWICE, having my son hospitalized twice last spring to be better able to help him, and countless other stressors not seen by most “typical” families.

And you know what? It doesn’t matter! In fact it’s even better that you don’t know. Because then, I truly know you’re being genuine and not trying to make me feel better because you know my situation.

Thank you so much. Thank you for being kind and taking the time to bless someone. You saw past my greasy hair, rain wet hoodie, the fact it said “BITE ME ” on it in bold black letters, and you simply saw a mom. A mom doing her best to love her kids and teach them about life, in the midst of a busy, bustling Shari’s on a stormy wet Sunday.

I hope your day is amazing and that you and your wife enjoyed the rest of your meal.

Signed,

A very grateful Mama C

A longer version of this post originally appeared on Me, You, Wine, Cheesecake, and Autism.

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18 Times Kids Said the Darndest Things

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Nothing is better than when a little human opens his or her mouth and gives us grownups a glimpse of their perspective on the world. (Also they get away with saying all sorts of crazy things.)

Ahh, to be a kid again.

The Mighty decided to have a good belly laugh at some of the goofy things our readers’ kids have said. Check it out below.

1. “‘My butt popped like a bubble.’ This was after she passed gas.” — Ali Hammons

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2. “I did not eat the M&M. I fell and it accidentally got in my mouth.” — Amy Schulz

3. “My cousin came over and showed us their ultrasound pictures. I told my 4-year-old son she a baby girl in her tummy. He continued to play with his cars on the floor but got nervous and ran to me. He looked up at me and asked, very quietly, “Did she eat the baby?” —  Melissa Schlemmer

4. “When our son was finally diagnosed with autism, I was trying to find a way to tell him. His response: ‘You have autism!’ And he stormed off. His sister sat there and said, ‘I want autism.’ Clearly that did not go as planned.” — Diana Delgado

5. “My son had just had his birthday, and we told a white lie to pay less for an entry fee. The next day we were going on the steam railway. Hubby was just about to pay when our little boy looked up and said, ‘So how old am I today, Dad?‘” — Jane Akroyd

6. “‘You don’t have to kill zombies. Just pull their teeth. That’s nicer.'” — Alexa Bloom

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7. “Years ago a friend’s 6-year-old daughter came running in all upset because her grandfather was teasing her. She said he was calling her an ugly muffin. I whispered something in her ear, and she ran outside screeching in a carry-three-miles voice only a child has: ‘Granddad, Donna says beauty is in the behind of the holder!’ Decades later it still cracks me up.” — Donna Runion

8. “My son’s kindergarten teacher wore tops that showed her cleavage. One day he said, ‘Mom, Mrs. L. has a butt on her chest!‘” — Nancy Hakes Gjoraas

9. “My 6-year-old bounced around the house chanting, ‘S-E-X! S-E-X!’ I was like, ‘Huh?’ ‘Six, Mommy! I can spell six!’ *PHEW*” — Lisa Hoffman Schaller

10. “I was in the grocery store after a day of substitute teaching a first grade class. I met a boy from the class and his mother. He screamed, ‘Look Mom, it’s my prostitute teacher!‘” — Ethelwyn Smith

 

11. “‘Mommy, did you hear that burp my butt made?’ From my 4-year-old daughter.” — Jennie Raycraft

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12. “My 3-year-old was getting out of the car and bumped her elbow. She said, ‘Oh Mama, I hurt my arm-knee.'” — Nancie Neely Capps

13. “Baby touching my cheek — ‘Mama… No sing.'” — Heather Brose McKeighan

14. “My 1-and-a-half-year-old shouts ‘die’ instead of ‘boo.’ Die mama… Die die.‘ Haha.” — Mary Elizabeth

15. “Standing in line at Target with my 4-year-old, my husband reaches towards her and she screams, ‘Don’t beat me!’ We had to explain to the crowd that if Dad tickles her, we always say it was her getting a beating — he never spanked her because she was daddy’s spoiled girl. Awkward silence fell over the crowd, then she screamed again, ‘Daddy, throw me a beating!’ and giggled. They laughed and went back to their shopping.” — Beth Burns

16. “‘Mom, can I smoke?'” — Sara Garcia Carrillo

17. “Today my 11-year-old daughter asked why that ‘pull my finger’ joke only works for boys? ‘It never works when I try to pull the joke on people… Do boys have a secret trigger or something?'” — Sabrina Ricks

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18. “‘I can stick out my tongue at girls when I get rich.'” — Becky Thomas

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What We’ve Learned From 2080 Days With Sanfilippo Syndrome

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Dear Sanfilippo syndrome,

I’m taking the time to write this letter to you because, frankly, it’s time I let you know how I really feel.

It’s been five years, eight months and 11 days since we found out about you. That’s 2080 days we’ve known your name. I’ve been quite content not to address you, but now it’s my turn to face you.

I’d like to know how it feels now that you’ve stolen many of our dreams. How does it feel to know you’ve slowly, over time, robbed our daughter of every chance at a normal childhood?

How does it feel to know you’re a murderer?

Are you proud of the many tears you’ve caused us to shed?

Is your plan to darken all of our days?

Do you laugh at the thought of the fear you bring?

Do you exist just to defeat us?

When we were first told about you, I had my answers. It was clearly stated in that trifold brochure we were handed just how ugly you were going to be. That your life-altering presence would tiptoe into our daughter’s body and ever so slowly start to show your ugly face.

In these 2080 days, you’ve taken her voice — the sweet voice that once said, “I love you,” to her mom and dad. The voice that was able to call her baby sister by name. “Ninley,” she called her sister, Finley. The voice that loved to sing, “Jesus loves me,” and “Happy Birthday.”

In 2080 days, your presence in her body has caused her to seize, to have a feeding tube, and you’re slowly taking her ability to walk and run as well. I had dreams for our Livia Grace. I dreamed of one day watching her walk down the aisle in my wedding gown. Now, because of you, I have to think about cutting the threads of my beloved gown to make her funeral dress.

I have every reason to hate you. To scream how horrible and unfair you are. How I wish I never knew you. It would be so easy for you to consume every ounce of every minute of every last breath I have.

I’m sure your plan was to defeat us. I could use everything I had to curse your name, to spend the rest of my life bitter, angry and consumed with the thought of you.

But I won’t.

I don’t have time for you. That evil, ugly plan laid out before us in that trifold — we aren’t allowing it to prevail over our family.

You see, your plan has backfired. Your presence, although unwelcome, has changed everything. You’ve changed our hearts, our eyes, our priorities and most of all our village of support. Not only do we love more fiercely and appreciate more greatly, but we know the importance of taking care of one another. You’ve brought people into our life who have decided to walk alongside us through this journey. A community of people who are inspired by an 8-year-old girl. A child who has brought even the strongest men to drop to their knees and embrace her.

Sanfilippo syndrome, unfortunately, you will always be a part of our world. You will be included in our vocabulary, but you will not be included in how we love, how we LIV, and how we cherish every day. You see, good really does prevail over evil. Every part of you is evil, but every part of our daughter’s life is good.

Her inability to verbally speak into our hearts doesn’t trump the way her eyes look into our souls. Her complete dependence on us as her parents to keep her fed, clean and safe has given us a new appreciation on how lucky we are to simply wash our own hands. The ugliness you bring in the night when she fights to sleep only deepens our gratitude to wake with the opportunity of a new day. The smiles and laughter you’re stealing make us celebrate as if we’ve won the lottery when a smile or laugh shows up.

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Sanfilippo, you are life-stealing, but you’ve also given us a new life. One in which we will never give up the hope that a miracle will save our baby girl but one in which we LIV for the promise of heaven.

A version of this post originally appeared on Hubert Honeys.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say 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.

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You Can Live Your Best Life with Mental Illness. My Story Is Proof.

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“Max is three, is three is seven, is seven is seven, is seven, is seven, is three is seven, is seven, is seven, I believe that faith has brought us here and we should be together babe but we’re not, we’re not is seven, is seven is seven, is seven, is seven, seven is five, is five is six, is six, is six…”

This is what it’s like to be in my brain for just a few seconds. I’ve never been formally diagnosed with OCD, but I truly believe I have it. I have, however, been diagnosed with Bipolar Disorder, Borderline Personality Disorder, and Anxiety Disorder, though I am coping well now.

I’ve struggled with mental illness for most of my life, having been formally diagnosed with major depression after a suicide attempt at age 14. It has not been an easy road. I have attempted to end my life about six times, which led me to needing surgery, having to drink charcoal, and being in the ICU twice on three of those occasions.

I wanted help, but not from the people who wanted to help me. I felt that they said they wanted to help me, but had already hurt me so much that I didn’t want anything to do with them.

After one of the more serious attempts, my family was so scared for my safety that they had me go live in a group home for those with serious mental illness. I hated it there and I hated my family more for making me live there (although I was 24 at the time, so I technically went voluntarily). Still, I hated them and it.

After living in the group home for two years, I made another serious attempt on my life. I was sent to a psychiatric unit that I had been on many times before, but what happened while I was there was something I had never expected. There I was, sitting in a chair watching tv, wanting to die still. All of a sudden, I believe that God spoke to me. I have never heard voices, and I just believed it was Him. The voice said to me, “You’re worth it to me and I love you!”

From that moment on, I was changed forever.

In 2006, at the age of 26, I moved out of the group home, got on Disability, and my housing voucher came through, so I got a one-bedroom apartment of my own. I started working part-time and seeing a therapist and psychiatrist regularly. I was still having some issues with the Bipolar, BPD, and Anxiety, especially around an issue that I had been struggling with for a long time.

I knew that I was a lesbian from the time I was 19 years old. I just knew. But the church I went to did not like that. So, bravely, I decided to leave that church, and in just a short time after that, I met my amazing wife! She is the most amazing person I’ve ever met. She is accepting and loving and is the best partner in life I could have ever asked for.

megan roach family all you need is love Our first couple of years were really difficult, but with her help, the help of my therapist and psychiatrist, and the medications, I am happy and healthy today.

My wife and I have been together for over seven years, married for over five, and have two fur-sons that are our children.
I am currently working with NAMI (National Alliance on Mental Illness) as an In Our Own Voice presenter, where I share my story of living well with mental illnesses. Recently, I became a volunteer Surgery Tech at the Maryland SPCA, where I help dogs and cats. I also have a Facebook page called Megan Runs 4 Mental Illness, where I talk about everything.

I really feel like I have the best life and wouldn’t change a thing. There is hope! You can live well with mental illness. I am living proof.

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When Someone Suggested It Would Have Been Better to Let My Daughter Die

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My wife, Jessica, and I have been to the hospital more times than we care to consider. All that has come with great cost, but great benefit, too. I’d like to impart something. Not wisdom — I wouldn’t assume that much hubris — but at least experience, and perhaps understanding…

My daughter, Namine, was diagnosed with a life-threatening condition. There are, of course, varying degrees of what classifies as “life-threatening” today. Modern medicine has improved much, even over the course of the six years since Namine was born. But Namine has such an incredibly rare combination of birth defects that doctors predicted that she would not survive.

Of course I can’t tell you, with any great certainly, all you might expect. Birth defects vary between children, and even in the respective support groups we belong to, Namine remains unique. But I can share our experiences, and hope that you might take something from them…

Paul eiche the mighty namine

If your child is diagnosed with a life-threatening condition, you need the hospital’s involvement. You need the doctors’ help. Pure and simple, without it, your child will likely not survive. I know for a fact that Namine would not have.

I am a Christian. I believe in a loving God. I also believe that this loving God, whom I worship and to whom I pray, let my daughter be afflicted with compounding birth defects. In case you’re wondering, to me that’s the opposite of a miracle…

But I also believe in a God that works miracles. People look at Namine and say, “It’s a miracle that she’s survived!” And it’s true, it is a miracle, but not one without human involvement. I believe that God has worked through my daughter’s doctors in order to stabilize her.

You might think that I’m contradicting myself, but hear me out. I believe that doctors — and modern medicine in general — are a great help, a blessing from God, and a miracle, even if they don’t know it.

Doctors often believe they have all the answers. At least, they would have you believe they do. But they don’t, and knowing that is crucial.

When Namine was in utero, Jessica and I attended visit after visit at the hospital. Scan after scan, week after week, they kept finding more things going wrong in Namine’s development. Her legs weren’t growing. She had club feet. Her hips were dislocated. Her jaw was regressed. Her heart wasn’t developing correctly. She had worsening scoliosis. On and on and on, the bad news kept piling up and we were met with despair.

Paul eiche the mighty namine

Then came assurance from the doctors. But this was not assurance of a positive note, but of the opposite — she was going to die. This was not “We, the doctors, believe she might die.” This was absolute, unwavering certainty: if we followed through with the delivery, she simply would not survive.

Several times it was not merely suggested to us, but encouraged: abort. Abort. Abort. Spare her the lifetime, however short, of pain and misery. Even if she did survive, she would be in constant agony. Spare her all of that. Terminate the pregnancy. It would be a mercy, nothing more.

Jessica and I refused. Whatever life we could give her, however short it might be, we would not kill her. We believed that we would love her for as long as God would let us have her.

Paul eiche the mighty namine

Namine did not die. Whatever awful fate her doctors had predicted, it did not come to pass. Whatever miserable existence she was expected to have, she has surpassed it…

A former coworker once said to me, upon hearing of Namine’s birth defects, “It would have been better to let her die.”

At the time, I felt a rage I cannot articulate. But despite his tactless words, it is unfortunately the opinion of many — including doctors at our own hospital. So, in a strange way, I am thankful that he was heedless in shooting off his mouth. It has given me the uncomfortable opportunity to confront this unfortunate viewpoint.

Paul eiche the mighty namine

Namine is severely disadvantaged, that much is certain. She has needed surgery more times than we can count — I’m serious, we really have lost track of the number — three of them alone on her heart. There are difficulties beyond measure, were we to measure them. But we don’t, because while they are there, they do not define us…

We chose the difficult road, the one not recommended, and it is one we love every day.

Paul eiche the mighty namine

This post is a shortened version of one that originally appeared on Eiche Fam.

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