When Someone Asked, ‘Do You Wish You Never Had Him?’

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I was recently asked by someone, referring to my son, “Don’t you sometimes wish you never had him?”

The question wasn’t meant offensively, but I paused a moment, letting those words sink in. I didn’t pause because I had to ponder my answer; I paused because I was shocked at the question.

I’m not judging the person who asked me. Yes, it’s a harsh question. But it was an honest question, and I have no issues with speaking honestly and candidly about our journey.

“No,” I replied.

“Be honest,” she said.

“Honestly, no I don’t. I hate bipolar disorder. I hate when it makes him depressive. That, I wish we didn’t have to deal with,” I replied.

And that’s the truth. Even if someone asked me on one of our worst days, it would still be my answer.

Here’s our truth: he has bad days — days where I think to myself, “I don’t know if I can do this. I don’t know if he can do this.” Days, even weeks, where we can’t leave the house because he’s in such a deep depressive cycle, he can’t stop crying and screaming.

Days where he begs me to make it stop.

Days where he begs his brain to “leave him alone.”

Days where I won’t contact my family or interact with the followers on my page because I can’t leave him alone, and because I can’t stand the thought of talking with people and trying to act like everything’s OK.

But you know what? He perseveres. He gives us the strength to continue. He is the reason we are strong. He is the reason we keep on keeping on.

Through all of this, never once, not even for a split second, have I ever wished Liam wasn’t my son. I had seven miscarriages before he finally came into our lives, and I thank God for him every night. He’s one of the strongest people I know, and even on hard days, I’m happy he’s my son.

Follow this journey on A Legion for Liam.

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To the Musician Rob Thomas, From a Thankful Special Needs Mom

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Dear Rob Thomas,

My daughter, Sam, has been at home sick for the past three days. Since she can’t speak, this morning she grabbed my purse, took me by the hand and walked me to the door that leads to our garage. This meant she wanted a car ride, so I helped her into the car and off we went. I turned on the car stereo and began to listen to my playlist of your music. Sam hummed and kicked her right leg to the beat.

I was feeling tired, and I started to think about some of the heartache I’ve experienced as mom to a child with special needs. I thought about the moment my husband, John, and I found out about Sam’s cleft lip and palate; the moment I had to give Sam to the nurse for her first major surgical procedure; the moment we found out she was deaf; the moment we found out she would need special education; the moment we found out there was “something neurologically wrong” with her; the moment she was diagnosed with a chromosome 18 abnormality; and the moment she was officially “labeled” intellectually and developmentally delayed. I also thought about the moment when I blamed myself for her challenges. A tear rolled down my face, and then your song, “Little Wonders,” began to play.

That’s when I realized my thoughts were headed in the wrong direction.

I’ve never been one to wallow in self-pity, yet here I was, forgetting about the beauty and blessings that existed in “these twists and turns of fate,” as you put it. Sam is almost 15 years old. She is sweet, smart, beautiful and funny, and she’s becoming a fantastic nonverbal communicator. She is also strong, brave, loving, intuitive and even a little bossy! She has given me a special wisdom and compassion and has even taught me to celebrate life’s “little wonders,” every milestone she achieves and every moment in which she defies the odds. She also brings the most joyous, amazing moments and generous people into my life.

Thank you for being one of these generous people and for creating one of these amazing moments.

Thank you for teaming up with Michael Franti and his Do It For The Love Foundation to help grant Sam’s wish to meet you and see her first rock concert. If anyone would understand and help us grant a wish for Sam, my instinct told me it would be you, and I was right.

Thank you for having a gracious tour assistant and tour manager. Please let them know how much I appreciate their generosity and compassion, and the time they took to help coordinate Sam’s meet and greet with you.

Thank you for being the genuine person you are. Though I was star-struck, I felt like I could talk to you for hours.

Thank you for kindly and patiently listening to my stories about Sam.

Thank you for sitting next to Sam and understanding that she was having a shy moment. I assure you, she knew something truly special was happening.

Thank you for taking the time to say hello, shake our hands, give Sam your autograph, take photographs with us and share your warm hugs.

Thank you for giving my husband, John, and I the chance to see Sam giggle, smile, feel the vibration and kick to the beat of your music.

Thank you for the endearing and heartfelt sentiment behind the songs you write. Thank you for sharing your perspective in your music and giving hope and inspiration. Thank you for sharing your life, your lovely wife, Mari, and the challenges you have both encountered and overcome.

Thank you for reminding your fans that we all have things we deal with in our lives every day, and for encouraging us to forget about these things during your concert, sing your songs together and make a memory for us to share and hold onto forever.

Thank you for letting me know you read my children’s book about Sam.

Thank you for believing in hope, healing, music… and love.

Thank you for reminding me that “these little wonders still remain.”

Love,

Monica

Do It For The Love is a nonprofit wish-granting foundation that brings people living with life-threatening illnesses, children with severe challenges and wounded veterans to live concerts. Founded in 2013 by musician Michael Franti and ER nurse Sara Agah, Do It For The Love has, to date, granted more than 400 wishes, working with a wide variety of musicians. Through the healing power of music, our goal is to inspire joy, hope and lasting celebratory memories in the face of severe illness or trauma. Nominate someone online and learn more at www.DoItForTheLove.org.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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You Don’t Need to Know My Child Has Autism to Show Him Kindness

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We’re always open about our son’s autism. It’s not like we make him wear a “Hey I’ve got autism!” t-shirt or badge. But we try to share his difficulties with the hope that people understand and then support him and us. Problems arise when we meet new people. Autism is invisible; they don’t see it. So many times we’ve heard the phrase, “But he looks normal; you don’t know by talking to him.”

Recently we had a family photo shoot. The pictures are beautiful, but for me they’re tinged with regret and disappointment. The photographer wanted us to pose in certain ways. The big lad really had trouble following the instructions. The photographer quickly lost patience, and it made him uncomfortable. Hubby and I stepped in, of course; we helped to place our big lad correctly and quickly explained he’s autistic. We tried to protect him, to spare his feelings. It hadn’t entered my head that he may have trouble with this, so we hadn’t prepared the photographer. But he could’ve had more patience and shown more kindness.

Autism isn’t invisible; it is always there …

In the shoe shop when he can’t hold his foot against the measuring device because he doesn’t feel it.

In the restaurant when he spills his drink or has trouble coordinating his knife and fork.

At the playground when he takes his time climbing to the top of the frame, up the slide or avoids anything that spins.

When he can’t find his shoes, bag, pencil, the iPad, etc., even when they’re in front of his face.

When he forgets to flush the toilet again.

When he has trouble buttoning his shirt or fastening his laces.

When he loses every race at sports day despite trying his best.

When he struggles to respond to a question asked.

In the library when he talks too loud.

When he can’t get the game out of the cupboard.

When he doesn’t look at the camera or in your eye.

At the hairdresser when he can’t stand the sound of the trimmers.

When the school year ends.

When he goes to a new place or meets new people.

When he misses verbal instructions.

At the birthday party he wasn’t invited to.

When he gets lost in the supermarket or restaurant.

When he worries that his brother is talking to strange kids (he is making friends).

When he repeats the same question or phrase over and over.

Autism is there when he runs, sleeps, eats, plays and speaks.

My fun, kind, clever son is often made to feel lazy, stupid, dumb, weird and unsuccessful. Not because he has autism, but because of the impatience of other people.

Thank you to the lady in the shoe shop who shows an enormous amount of patience and takes a long time to make sure the shoes fit properly.

Thank you to the teaching assistant who attends courses in her own time to learn how to help my son.

Thank you to the kids who wait patiently at the bottom of the slide.

Thank you to the kids’ club staff who know when to leave him alone and when to encourage him to join in.

Thank you to the friend who encouraged him to climb, who told him, “You can do it!”

Thank you to the therapist who showed him all the positive things about being autistic when he could only see the negative.

Thank you to the teachers who read the books and learn how to help.

Thank you to my friends who always listen.

Thank you to everyone who reads this story.

Thank you to all those people who smile.

Finally, thank you to the people who try to understand!

I don’t want my son to wear a badge or carry a card proclaiming his difference to the world. He shouldn’t need to! A little bit of kindness — a little bit of patience — make a huge difference.

Follow this journey on Diary of an Imperfect Mum.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Mom as I Sit Beside Her Hospital Bed

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Dear Mom,

I sit here at 3 a.m. in your hospital room, looking at you, with memories filling my mind. As a medic, I understand what is happening inside your body, although I can’t feel your pain. I feel helpless and unable to give you the comfort you need. I understand the cancer is growing in many places in your body. It kills me to know I will lose you soon.

As a medic, it’s my job to do whatever I can to save lives, but I am literally helpless right now, only watching as you slowly fade away day after day.

I remember when I was young, you tried to hold me and comfort me, but I only pushed you away. I somehow thought you would be just like my birth mom. But as I sit here listening to the IV pumps, I remember the times you showed me your love and care. I’m overwhelmed with sadness. Somehow I think when the doctors come in, they will tell me you’ll be OK, but time after time it’s only more bad news. I’m trying so hard to be strong for you and Dad, but I see the pain in Dad’s eyes. I see the tears fill up; I see the fear of losing the one person he loves in his eyes.

I feel lost and confused. I feel like I have failed you as a son. I’m unable to protect you and keep you safe.

As a medic, I see both life and death. It’s easy for me to separate my emotions when responding to a patient, but when it’s your mother, the lines get blurred, and you suddenly become lost in emotions and memories. I feel my emotions and body being stretched to its tearing point, and I have no idea when that’s coming. Yet to this day, I’m still standing strong, still comforting you in your last moments of life. Somehow I think doing more research on cancer will help me cope with all of this, but in reality, it’s only giving me more fear and doubt that you will feel better.

I want to say sorry for the times I never said I love you, that I never hugged you, for the times I didn’t call. I’m so sorry I was not the son you thought I would be, but I’m here now. 

It’s been a long night watching over you. I sit here in a chair with Dad passed out on the couch, and I think to myself, Finally, I can actually break down. A tear forms in my eye, and then more come, one after another. After a few minutes, I slap myself to snap out of it, thinking, You have to be strong for Mom, you have to be strong for Dad. I see your vitals drop, and one after another your organs fail. You’re on a morphine drip, and I can see you feel no pain. As I look at you, feeling so helpless, I think of all the times we had when I was young. The ECG machine alarms go off, your heart rate dips below 50 and I can tell you’re kissing death. Your blood pressure drops. More time is taken between each breath.

Minutes later, I hear you whisper, “Lord forgive me.” I see you take your last breath. I see your last heartbeat register on the machine… Flat line. No more heartbeats. No more breaths.

Forever I love you, Mom. Forever you will be with me.

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The Words Every NICU Parent Deserves to Hear Before Leaving the Hospital

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Parents who have spent time in the NICU know as the day of discharge approaches, you’re alternately thrilled and petrified.

Will I be able to do this?

She’s already been through so much!

What if…? 

A million what ifs run around your addled mind, some too terrible to even acknowledge.

I was bend over my daughter’s crib with her tiny hand in mine. After all her determination, she still only weighs 4 pounds, 9 ounces, and we had to purchase a special car seat just to get her home. I can tell she absolutely knows I’m her mama and we’ll continue to walk through whatever fire is placed in our path.

After 110 days, multiple surgeries and scares, we’re going home with a trach, g-tube and nursing care. My lovingly designed nursery is overrun with necessary medical equipment. I’m still adjusting to sleep deprivation, having just brought her twin sister home 13 days earlier. I pray I have the strength, but I have a lump in my throat and a tightening fear that things will go wrong.

One of our most dedicated nurses comes in on her day off to say goodbye and good luck. She sees my pale, weary face and says, “You have so much joy ahead of you!”

I was so wound up in my worry, I hadn’t even considered the possibility of joy. Her words completely pull me out of the pit and give me the courage to leave with my daughter.

That nurse ends up being 100 percent right.

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When My Child With Special Needs Learned What No Adult Could Teach Her

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My daughter, Esmé, has a developmental delay. She doesn’t yet speak or walk or eat with her mouth. Harder still, Esmé also struggles with a number of social cues. Her special education teacher has been working on waving for I don’t know how long. I lift her hand every night to wave good night to her papa. Every therapist waves hello and goodbye to Esmé, urging her to join them. Whether it’s because of her lack of control over her body or because she doesn’t understand, we don’t know, but Ez has never indicated any interest in waving. Never once has it seemed to register for her.

I’ve never truly worried that she wouldn’t have friends. I know there are kind and gentle souls out there waiting to embrace her. And I also know Esmé is sweet and fun — even if she can’t run or speak or play in a typical way — and that people are drawn to her.

But I certainly never imagined she would garner the kind of consistent and genuine friendship I have observed while she plays with her peers on the playground of the Taylor School where we’ve been visiting once a week for a year.

On the playground, I stay out of Esmé’s visual range while helping with the other children as they play. Esmé is almost constantly in the middle of a circle of friends. One moment she is sitting at the top of the slide with her teacher, Dorothy, banging her feet on the platform while other kids joyfully join in, laughing and getting louder as they see her happy response. Another moment I scan the playground and find her sitting up in a circle of friends. I had missed her — passed over her twice — because I couldn’t recognize her strong posture.

Last week as Dorothy and I pushed Esmé’s red wheelchair out to the playground, we heard the usual shouts: “Ezzy! Esmé is here!”

One of those shouts came from a girl just a few feet away. She ran right over to Esmé. As the girl approached, Esmé shifted to sit up straight as her back lifted off of the support of the chair. She leaned toward the girl who had stopped in front and to the left of Esmé’s chair. The girl raised her left hand and said, “Hi, Esmé!”

Esmé looked back at her for a beat, and then, pointedly, lifted her own hand and smiled back at her.

Dorothy and I audibly gasped. We glanced at each other, each of our faces clearly asking the same question, “You saw that, too, right?”

Just like that, her peer modeled something, and Esmé, on cue, returned the gesture. Esmé’s friend taught her what none of the adults in her life could: the signs of friendship.

However, what I keep turning around in my mind isn’t so much the gift that the school is giving Esmé. What I think about is the gift the school is giving to Esmé’s peers — like this little girl — by modeling inclusion when kids are old enough to understand she’s different, but not held back by that understanding.

I have come to terms with the idea that my daughter’s trajectory will be as unique and unpredictable as her combination of genetic disorders is unique and unpredictable. I have grown to understand all we really can know about Esmé is what we know of her in the present. I had to unlearn everything I knew about childhood and milestones in order to meet her there in the present.

But her friends have learned the right things from day one.

This is their friend, Esmé. She is going to be 5 in January. She doesn’t speak, but she knows her colors, letters and numbers. She can read. She doesn’t stand without support, but she moves through space in her dancing motion of rolling, pivoting and crawling. Perhaps, most importantly, she has a cat named Chicken. And she likes it when her friends make loud sounds on the slide.

Her friends have included her, as she has learned to mirror their signs of friendship.

And that’s exactly what kids should be learning on the playground.

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Follow this journey on The Cute Syndrome.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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