A Blind Mom’s 6 Imaginary Friends

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As a blind mother of a toddler and infant, I’ll be the first to admit — it’s not easy to make friends. In fact, I’m embarrassed to say, I actually don’t have any. Friends, especially fellow mommies, are hard to come by. Without eyesight, I can’t physically get to the local Gymboree class or meet up for toddler dance sessions. My children are too young to travel by car service because they still require car seats. My double stroller is too cumbersome for public transportation. I am resigned to stay in the vicinity of my own neighborhood, which thankfully has a small zoo I can navigate without the use of my white cane. 

My 2-year-old daughter often brings stuffed animals with her when we take our zoo walks. She has just started mastering the art of imaginative play, and the conversations between her dinosaurs and princess dolls is beyond entertaining. She also has her fair share of imaginary friends who assist in collaborating with her theatrics. Then it came to me — if my 2-year-old can do it, why can’t I? So I came up with my own list of imaginary mommy friends who (in my mind) are my besties. Each has a quality I want in a lifetime gal pal. When I’m having a crappy day or meltdown moment and I need a fellow mother to turn to, I think to myself, “What would ___________ say if she were here?”

1. Pioneer Woman (Domestic Goddess): Ree Drummond is my biggest girl crush, seriously. How could you not love a woman who blogs, photographs, cooks, raises four kids and is married to man who looks that good in a pair of Wranglers (shout out to her husband, Marlboro Man)? Ree seems caring and genuine about what’s most important in life: family. She’d happily lend me a cup of sugar, coach me on what to cook for a church potluck and be that experienced voice to listen to when my daughters drive me crazy with their shenanigans. I’d love to know a fellow mom who’s been around the block in the parenting world. 

2. Rosie Pope (The Guru): Rosie’s built her empire by understanding what women need before, during and after pregnancy. She gives parents a road map for deciphering their kids. Teething problems? I’d call Rosie. Gotta look hot for date night? I’d email her for easy, mom-friendly fashion tips. She would get me through the tough times of parenting with her extensive knowledge as a parenting professional and mother of four. I’d like a mommy friend whose personal experience proves she’s got her act together. 

3. Tina Fey (Comic Relief): Hysterically funny, beautiful and successful describes this one-of-a-kind mommy. I could easily confide to her all the comedic escapades of life with my husband and two children. I’d love to meet another mommy to laugh with about the things that go on daily in our households. Lord knows, we mommies have lots of material. 

4. Dr. Jennifer Arnold (Kindred Spirit): As a pediatrician and mother of two, Jenn of TLC’s “The Little Couple” would be the person I could call if one of my kids were running a fever. I know she’d give me great medical advice without judgment. As a little person, Jenn knows what it’s like to be an outwardly unconventional mother. It would be great to meet another mother with a disability, who loves her kids like I do and is just trying to raise them as best she can. It would be nice to know I’m not alone.  

5. Daphne Oz (My Idol): Daphne is a young, working mom trying to balance career, family and parenthood. She integrates aspects of healthy living into every facet of her over-scheduled existence. Daphne is the mom I think of when I’m feeling overwhelmed by my kids, need to meet a deadline for work and still have to make dinner. She’s the little voice inside my head telling me, don’t order a pizza, make one with your girls.

6. The Lady at the Zoo: I don’t know you’re name, but you have a little girl who’s about the age of my eldest daughter. I tried to talk to you once. You commented on how you “had never seen the type of glasses I was wearing before.” I took them off to show you and told you I was blind. I could hear the nervous tension in your voice as you said, “That must be hard” and then you hurried your child to the next exhibit.  

We pass each other at the zoo every day, but you always leave quickly as my daughters and I approach. In fact, you can’t seem to get away fast enough. I know you don’t want anything to do with me, but in the confines of my imagination, we’re friends, and our children laugh and play together as they look at the animals.  

I’d like to have another mom to go to the zoo with. I’d like my daughters to see I have meaningful friendships with women and fellow mothers who are loving, professional, creative and fun. I’d like to be able to show my kids there are good people in this world, who aren’t afraid of their mommy because she is different… because she is blind. Someday I know I will make a great friend and fellow mom, and then I can stop pretending. Until then, I still have Ree, Rosie, Tina, Jenn and Daphne to help me through my day — they just don’t know it.

Holly and her two daughters standing in a park
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When My Grandson Explained Why He Doesn’t Get Mad at His Bullies

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This is a thank you to a young man, Jesse, who was never expected to survive infancy. But Jesse has an inner strength that is amazing, and he’s made it past that big 30th birthday. If we had more people with his gentle attitude, perhaps we’d have world peace.

Thank you, Jesse, for all the times you came to me when I was in distress. Those times when you were just a child and I was suffering from depression with a mind tearing around in chaotic confusion. Or when the pain of migraines shattered my brain. Somehow you knew when I was hurting. And you just sat beside me. You didn’t say anything. Didn’t try to solve my problems. You were just a quiet presence. A loving, calming anchor. I didn’t physically grasp onto you, but I held you in the space we shared, and my mind slowed down, my heartbeat leveled out and I could breathe again. It was as though you absorbed some of my pain.

Thank you for all the laughter you’ve brought me over the years. And for those moments that were deeper than the laughter — moments that were filled with your caring, that were more than a response to a joke or a funny moment shared. They were a sharing of your heart. A sharing of you.

Thank you for always being Jesse. For not trying to make yourself someone you’re not. Thank you for not being angry with people who hurt you. I remember once when you were young, we sat at a table in a public place. Some young kids were sitting at a table next to the one we chose, and when we sat down, they stared at you, then got up and moved to another table. They kept looking over at you, whispering and laughing. You glanced at them a few times, always smiling. I felt pain for you because I knew you were aware they’d moved away because you were different.

Later when we were alone, I asked how you felt when other kids avoided you or bullied you. You looked at me and shrugged. You told me you didn’t get mad or upset because you knew they simply didn’t understand. You knew you made kids and grown-ups uncomfortable because you were different and they didn’t know how to react. “It’s OK, Grandma. I understand.” You patted my arm, comforting me! You were so benevolent. So forgiving. You still are.

I wondered where all that wisdom came from at your young age, and then I realized you were a stronger person as a child than I was as an adult. I’ve forgotten the exact details of that incident, but I’ve never forgotten the pride I felt for you. Still feel for you.

Thank you for being my grandson. You have shown me lessons in patience, in sharing, in accepting, in loving, in goodness. I’m not the best student of your lessons, but I hold you in my heart with pride. And deep love.

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I Didn’t Feel Grief Over My Children’s Autism Diagnoses, but I Did Feel This

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I never experienced grief when my children were diagnosed on the spectrum. I experienced relief, and I experienced anger that I wasn’t listened to sooner. I experienced sadness for the difficulties my son would face, and I experienced panic over how my children would cope when I’m no longer here.

I also felt intense resentment for anyone who asked questions and made statements born of sheer ignorance.

I’m sure you’ve heard a few of these, too:

“So they can grow out of that, right?”

“What’s his special talent? I heard ‘they’ all have one!”

“He’s fine, they are over-diagnosing these days!”

“Was it the vaccines? Many parents say it is, you know?” (This was from a nurse who was about to vaccinate him with his preschool booster.)

“What’s wrong with his legs?” (When my son was out in his major buggy.)

“Don’t let him hit you! I wouldn’t have that sh*t.”

“Take his iPad away, he’ll learn.”

“Discipline! That’s all he needs.”

“Diet, it’s all about diet. The gluten-free/carb-free diet worked on Jenny McCarthy’s son.”

“Sip water from the empty shell of a giant African land snail.”

“He just needs to interact with other kids, he’ll learn.”

“Make him go to birthday parties! He has to.”

“He’ll eat it if he’s hungry.”

“Get his metals tested.”

“Leave him to cry. He will fall asleep.”

“So, you won’t be having any more kids, right? I don’t think you should…”

“It’s a sickness, illness, disease…”

“You’re not brave enough to try and heal him. He can be recovered!”

Those are the ones I can remember. There are more, I’m sure. Some were intentionally hurtful, some were well-meaning and all raised a resentment in me that would make me want to smash someone’s face in.

As parents, we put up with that. We also cope with seeing our child have meltdowns; we get hit and spat at. Sometimes we cry, we run out of the room and cry through sheer frustration because we can’t work out what our baby wants.

But let’s look at that again.

Our children try to cope with meltdowns and get so frustrated, they hit out and spit at the one person they know will never leave them. Sometimes our children can’t express what they need; they can’t make us see. They watch us run out with tears in our eyes, and they feel what we feel.

You see, you’re in this together with your child. No one knows better than your child what you’re feeling. They know because they feel it tenfold.

I’ve learned that signing is instant. If my children can’t express what they desperately need to communicate, we sign. If they’re melting down, I stand back because I know a touch can feel like an electric shock. Unless they’re self-injurious or in danger of running into the road, I don’t touch them. I’ve learned to take a deep breath and count to 10, even if I have to jam my fingers in my ears to do this.

That doesn’t mean I don’t experience frustration. Try witnessing your child’s meltdown while feeling a meltdown yourself. Try coping with your child screaming in excitement when you have sensory overload.

I don’t pretend to know everything, but I do my best, and so far I’ve done pretty well.

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2 Words That Describe Being a Parent of a Medically Complicated Child

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Four nights ago, I sat in my daughter’s hospital room trying to rock her to sleep. She had just gone through three different tests and six hours of anesthesia.

My daughter doesn’t have cancer or a life-threatening illness, but she’s medically complicated. Medically complicated is the term doctors use when your child has a lot of medical problems. They use it when they see something is wrong, but they don’t know exactly what.

We spend a lot of time in and out of hospitals, doctor’s offices and therapy appointments. We worry a lot about about her because she has plenty of symptoms and several diagnoses, but there’s no one thing that explains all of it.

I second-guess myself every day and wonder if we’re doing all we possibly can for her. But at the same time, I wonder if we’re doing too much. Are the tests we let the doctors run worth it? Will they actually find something this time? Should we just stop and hope things will eventually get better? It’s hard to know, and these are the thoughts that plague me every day. What is the right choice?

As a parent, you just want to do the absolute best for your child. Sometimes that means figuring out what’s wrong and fighting for them; other times it means waiting things out. While I’m not sure if there’s really a “right” answer, there will always be that voice in the back of my head asking, “But is it enough? Are you doing enough?”

We sat there in the pre-op room, our nerves all over the place, waiting for them to take our daughter back. The nurse asked us to list all the times she’s been under anesthesia. I paused. My daughter had been under so many times I had forgotten. I wondered if that made me a bad mom. How does one lose track of something like this? I named all the times I could remember: surgeries, a laryngoscope, multiple endoscopies and more.

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Later, we all walked back to the operating room where they preceded to try and put her under. Daddy was holding her, and she was fighting the mask that would put her to sleep. After what seemed like an eternity, she was asleep, and they took her from our arms. The doctor told us to give her one last kiss, and it took everything in me not to openly weep.

Throughout the afternoon, I had flashbacks of all her other hospital stays. All the other times where they took her from me to put her under. The one that stays with me the most is the time they did two surgeries at once. She was only three months old, and giving up control of my sweet baby to those doctors and nurses is something I will never ever forget.

If I had the words to describe what it feels like to be a parent to a medically complicated child, I would say that it feels numbing. Numbing because you’ve been through so many procedures, so many hospital stays and so many surgeries that you just start to go through the motions. There’s no time to cry and no time to really let yourself process it. You just do what you have to do.

I wouldn’t only describe it as numbing, though. I think I would also describe it as inspiring. Inspiring because of all my daughter has made it through. Inspiring because of all I’ve made it through. Inspiring because of all the hard work my daughter puts into just living life. And last, but not least, inspiring because of the few great and far in between doctors, therapists and nurses who have changed our lives.

While there are good days and bad days, I’d never wish for a different child. I wish I could take away the hardships and everything she’s been through. I wish it had been different for her, but I pray with each passing day that things will change, and I thank God for the blessing of my little girl.

As I walked into the hospital the next night to go pick up my daughter from her sleep study, I thanked God that her eighth hospital stay was about to come to a close. I breathed a sigh of relief and prayed that maybe, just maybe, this would be the last time.

Follow this journey at Singing Through the Rain.

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To the Mom-to-Be at the Store Giving Us a Look I Know So Well

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We shared a moment today, soon-to-be mama.

You were coming down the grocery store aisle, glowing and beautiful, and probably a couple months away from being a mother, possibly for the first time. We locked eyes for a second, and I couldn’t help but glance at your belly and smile. At about that time, you looked at my little boy in the race-car shopping cart. The moment you glanced down, probably to smile at my son, my previously quiet boy started to yell and flap with wide eyes at the toy giraffe in his hands.

This caught you off guard, and you diverted your gaze quickly. You barely caught my eyes again with an uneasy smile as you walked past, but I could see it. I know it so well, you see. Fear — not of me or my son, but for yourself, for your future child.

I wish I could have reached across that awkward moment and said this:

Please, don’t be afraid. There is an epidemic, but not in the way people think, not of the big A. It’s an epidemic of fear and misunderstanding, and it’s spreading like wildfire. I suffered from the disease personally. The fear of doing something wrong that would affect my child, the fear of having a child that wasn’t “typical,” the fear of my life not turning out how I’d always planned it.

Dear future mom — being afraid of it, and even trying my best to prevent it, couldn’t keep it from happening. All it succeeded in doing was nearly driving me mad.

I wish I had said:

I’m the lucky one for having this special boy. He is the most interesting, beautifully minded, amazing person I’ve ever met. I wouldn’t trade this experience, being his mother, for anything. I’ve met wonderful, inspiring people, seen love work in ways I could’ve never imagined, and I’ve witnessed miracles every day. I was forced to grow in ways I thought I didn’t even need to. I realized I was so much stronger than I ever believed myself to be. None of this would’ve happened if one of my biggest fears — and truly it was — hadn’t come true.

I don’t know what the future holds for you, mama, but I can tell you this :

if your baby does turn out to be anything like my son, you will have the most painfully beautiful life. You will feel blessed and in awe of your child and yourself and the world. You will probably cry lots of tears of frustration, but you’ll cry even more tears of joy. You will be OK. I promise.

Most of all, you’ll be the second luckiest mother in the whole world.

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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When Loved Ones Disappear Because Your Child Is Sick

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Parenting a healthy child totally changes your social life. You spend time and energy caring for your child. When events come up that involve late nights, you weigh the pros and cons of what that evening of fun will look like the next day at sunrise when your excited child runs out of bed. Your social life changes as you find friends who also have children, and you discuss diaper consistency, the latest bottles and the coolest new shows on Disney Channel.

This was the image I had in my mind. Even though I was going to be a parent, I thought I’d still have a social life. I was so incredibly wrong about what I thought life would look like.

My son, Von, came in to the world early, and I often thought he was in a hurry to go nowhere. He stayed in the NICU for weeks. We measured each poopy diaper to the gram and counted every single milliliter of milk he drank. Every single thing he did was put on a chart, and my early weeks of motherhood consisted of beeping machines, alarms and sleepless nights wondering when he’d come home. I felt so lonely then. I wanted to take him home. I thought if I took him home, it could be like I imagined. I thought I could put him in those tiny little outfits, and cuddle him to sleep while I watched my favorite shows. I imagined coffee dates with friends during my maternity leave, with them holding him.

When Von finally came home, he was still so sick that we didn’t go anywhere. The friends I thought I had disappeared, and I wasn’t sure why they left.

I’ve thought of all the reasons a friendship that spanned years would suddenly disappear after Von’s diagnosis. I wondered why all the people in our lives scattered. I knew when we had children, relationships would change. However, I didn’t realize when you have a sick child, it’s sort of like wearing a scarlett letter in the 1700s. The whispers, and the assumptions and blame about what I must have done wrong during pregnancy. In fact, a woman I just met told me Von wouldn’t be so sick had I not eaten all those GMOs during pregnancy. I had friends suggest it was likely the medication I took while I was pregnant. In truth, we’ve never found the answer, and no matter what I hear about why he could be sick, it changes nothing.

I thought my husband and I could at least count on our family. Unfortunately, that assumption was wrong. Family struggled to understand the magnitude of his illness, and I believe many still have no idea how hard we fight. Others just don’t care to check in on Von’s development.

It was hard to arrange play dates when I constantly had to remind them we couldn’t be around other sick children. Von is so fragile, even happy events for most are stressful for our family. We’ve never attended our extended family’s Christmas party because children who attend are often sick. Our holidays are quiet, and often the three of us, or my parents and sibling. It’s not at all how I imagined life would be.

I’m trying hard to find joy in the pain. It’s been incredibly difficult. Our lives are so different. As the holidays get closer, I worry about the germs and what they will do to Von. I feel sad that Von can’t enjoy the basic things other children do, and I struggle to find ways to make this season joyful for him. He’ll hopefully go trick-or-treating, but only to a few homes because there are far too many germs this time of year, and the wind is hard on his asthma. We’ll go to Thanksgiving, but only for a short time because he still struggles around large groups, and this Christmas will hopefully be the first time we can attend a larger family function. It’s hard knowing we have to rely on so many other people to keep their kids home if they’re sick to avoid exposing Von to serious illness. This year, I’m putting my heart in God and hoping he will keep Von well and allow him to enjoy the season instead of fear it. The holidays are a magical time for most, and they scare me to pieces.

I pray for a day when our lives are less isolated, and when people will no longer fear Von’s disease. I pray for a society that isn’t scared of embracing children with serious illness. We get a lot of praise online and through social media. However, in our daily lives, most of us are alone, and most of us really need friends to help us get out of this darkness. If you’re reading this and you have a friend with a sick child, don’t be afraid to say the wrong things. Just reaching out and saying something is better than saying nothing at all.

Follow this journey on Von’s Super Hero Facebook page.

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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