In This Moment, This Is What It Feels Like To Be Your Mom

106
106

In this moment I’m overcome with excitement; you have arrived and anything is possible!

In this moment I’m smothering you in kisses and hugs.

In this moment I’m singing to you; your smile lights up my heart.

In this moment I’m worried. Why aren’t you walking?

In this moment I’m grateful. The tests come back and say it’s nothing too serious, something called “hypotonia,” low muscle tone. You quickly start physical and occupational therapy

In this moment you’re walking for the first time, you’re just over 2 years old, and I can’t help but cry. This is one of the best moments in my life. I knew deep down the day would come, but to be honest there where times when I had serious doubts

In this moment you are amazing me with how much you know, how much you see.

In this moment I’m confused. I have no idea what is happening. It’s only the second day of kindergarten. Aren’t you just being a typical kid? Don’t they usually wait a few weeks before pulling you aside?

In this moment I’m frantic. Can anyone help? God please help!

In this moment I’m pissed as all hell. Why can’t they help, why can’t they treat you with the respect, patience and understanding you deserve?

In this moment I’m heartbroken. Where are the answers we are so tirelessly trying to find?

In this moment the doctor tell us she thinks “Griffin has Asperger syndrome.” Asperger syndrome, my son has Asperger syndrome.

In this moment I feel judged and insecure. Being told you aren’t doing a good enough job as a parent is not something I ever thought I’d encounter.

In this moment I’m praying the caller ID doesn’t say “Chicago Public Schools,” but it does…

In this moment I’m choosing to just hug my husband and let this challenge bring us closer together. Making this choice is not always easy, but I know it’s worth it.

In this moment I realize our family is anything but typical, and things like making friends and going to school are not going to be done in a traditional way.

In this moment I need to mourn things not looking the way I thought they should, even though I know we are doing what is best for you.

In this moment I am thankful you can express yourself in your own unique, brilliant way.

In this moment I’m feeling tired and frustrated that you need me to repeat and repeat things a certain way. I feel guilty for feeling this way because I know it helps you and is part of who you are.

In this moment I’m smiling, hearing you share your passions and vast knowledge on topics ranging from video games to classical music, despite hearing about it for the millionth time and not always understanding just what it is you’re telling me.

In this moment I’m in awe watching you talk to people you just met. Seeing you ask a parent about their baby, making that mother or father feel so special, noticing when another child falls down and going over to them to see if they’re OK.

In this moment I feel so lucky that at the age of 11 you still want to hold my hand even after I’ve told you it’s OK to let go. You look at me with your big brown eyes and say, “But Mom, I love you, why wouldn’t I want to hold your hand?”

1173751_10201669733202601_1431976202_n

In this moment I’m believing, despite what I’m currently seeing, that your future is filled with lasting, loving, supportive friendships, amazing opportunities and experiences

In this moment I’m hearing you meltdown. The banging, screaming and cursing breaks my heart. I take a deep breath, and I hold you

In this moment I feel a pain that I pray I will never feel again. It drowns me in a coat of heavy despair.

In this moment I blame myself. I should have prepared you better. I could have said it this way… I should have remembered to bring this or that.

In this moment I’m trying to trust that I’m doing enough for you. It’s one of the hardest things to do.

In this moment I try to remember that even though you’re 11, sometimes the only way you can handle what is happening is to do what a 4-year-old might do, and that is to scream.

In this moment I will try — try to trust that whatever we need we will receive in the most perfect timing.

In this moment I am listening to you, really listening.

In this moment I know you are doing and will do amazing things.

In this moment I’m so grateful for it all — yes all of it — because I know every moment is a gift. A gift I sometimes would like to return, but one I know is leading to the next great moment.

In this moment I’m letting go of the fear, guilt, blame and loneliness.

In this moment I’m thankful for every single person who has taken the time to know you, ask about you, encourage us as a family and see the beauty of who you are.

In this moment I know you are exactly who you are supposed to be; I am exactly who I’m supposed to be, and that is enough.

In this moment I’m thanking God for trusting me and your dad with you. You, a brilliant beam of light sent from above to change me and anyone who is lucky enough to ever know and love you.

In this moment I love you more than the last.

This post originally appeared on What Will This Day Bring?

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

106
106

RELATED VIDEOS

JOIN THE CONVERSATION

How Severe Food Poisoning Made Me Reevaluate My Life

77
77

There had just been a snowstorm, and my husband’s business trip was delayed. I was happy to keep him home a bit longer. Maybe I was feeling romantic a couple days after Valentine’s Day or maybe I just wanted him to shovel the snow. I went into the bathroom for a shower. I heard the house phone ring but didn’t think anything of it. I walked out of the bathroom, saw my husband looking pale, sitting silently in the living room. I was instantly nervous, and he told me that his brother, only 32, died. My mind went blank.

My brother-in-law was a free spirit, a surfer who traveled the world following the waves. He was a lifeguard who saved many people’s lives. He loved children and taught them about the ocean. To celebrate his life, hundreds of people gathered on the beach in February and many paddled out into the frigid Northeast water to pay tribute. This was the first event that February that made us take a hard look at what we were doing with our lives.

A few weeks later, I went to China without my husband to see my family. One morning, I was out with my sister, and I suddenly began to violently vomit. I fell over. My sister rushed me to the hospital, where I heard the doctor saying, “blood pressure extremely low…” I’d never felt that bad in my life and thought, “This might be it.” The doctor later said I had severe food poisoning, and I might have died had I not made it there so quickly.

In the hospital bed, I started to wonder if I was making the most of my life. Sure, I had a good education and career. I was on a great path by most people’s standards. I was learning that life is full of resilience but can also be fragile. Was I really making the impact I wanted to make on this world?

Heck no!

I decided at that moment that I want to live my life my way. I want to do things I’m truly passionate about and make a difference. When I returned to the U.S., I got together with my husband, family and friends. Events in our own lives led us towards a common interest — making the world a happier place for kids, especially kids who really need it. We had some ideas about making improvements to kids’ lives in the medical space. After talking to different families, doctors, nurses and therapists, SuperHealos was born.

1 copy

My husband and I left our stable jobs to pursue the SuperHealos mission. We’re just starting out but are making great progress. SuperHealos is dedicated to helping kids face life’s toughest challenges. We’re starting this journey by creating stories and characters to whom these kids can relate. For example in our first coloring storybook, “SuperHealos Adventures in the Hospital,” the kids are introduced to the SuperHealos characters and learn what they’ll encounter during their hospital stays. We’re introducing products, like our SuperHealos cape, that play an important role in the story. Kids can feel like SuperHealos with these products and continue to be empowered after reading the book. Our other big focus right now is redesigning the traditional hospital gown to make it more comfortable and exciting for kids to wear. It’ll be a fun part of the SuperHealos ecosystem. You can isit our website and Kickstarter for more info and to support the cause.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

77
77
JOIN THE CONVERSATION

Mom Creates Groundbreaking Tool for People With Visual Impairments

2k
2k

Catherine Rose’s daughter, Alexis, is both hearing and visually impaired. Rose’s experiences with her daughter’s disabilities motivated her to seek out a career with a company that was improving people’s lives, which led her to accept a job at Philips in their healthcare division.

Rose noticed her daughter’s attraction to lights and convinced her employer to build a teaching tool to help children with visual impairments learn. LightAide is now being used around the world by people of all ages, and, just as important, by their teachers and caregivers, who are beginning to realize their charges might have better cognitive abilities than previously thought.

“There’s a whole lot of people who have vision, but they have low vision,” Rose said. “They can’t see as well in the light that we normally give them. But if we give them more light, then they may be able to use more vision.”

Read more of Not Impossible Now’s interview with Rose below:

Courtesy of LightAide

NIN: Your daughter Alexis is visually impaired. What’s her relationship to light?

Catherine Rose: We had the traditional toys that all had very little light on them and some sort of sound, and she was moderately interested in a lot of them. But what we found was as long as it had a bright enough light on it and a sound component, she loved it.

When she about two years old, my dad said what if I get out my light-up keyboard for Alexis? She has a combined hearing and visual impairment, so I didn’t know what she would think of it. Lo and behold, she loved it. She refused to leave it. I’d try to pick her up and she’d hunch down, like you can’t pick me up, I’m not moving, I’m not going or if I’m going I’m taking this with me! So we got her one.

She pays really close attention to lights on in a room versus lights off in a room. She gets really scared in dark spaces and even our church has a really high ceiling, so the lighting is fine ambient lighting for all of us, but it’s really spooky for her because she can’t see the roof and she can’t tell where the light is.

Do you get the sense that she’s negotiating her space and where she is in that space relating to the light source?

Rose: Yes, it’s like a beacon. The way some blind people learn space is by walking around the perimeter of a room, and it’s almost like she’s using light as her perimeter finder. If a room isn’t bright enough, she won’t go into it and she’ll cry. I think she uses light to get a sense of space and where things are. When she went to the Philips showroom for the very first time, she was like, “Thanks mom, you made the walls light up so I can see exactly where they are. Why haven’t you done this before?”

How did you get the project started?

Rose: There are a lot of [disabled] kids who light gaze, they’ll spend their day in a classroom staring at a light on the ceiling. It’s not a preferred thing for them to do because there’s no information coming from a light on the ceiling. When Alexis enrolled at the Perkins School for the Blind in Watertown, Massachusetts, they had this modified toy, basically Christmas tree lights they’d put on a board. They hooked it up so when a kid hit a switch, the lights would come on. It’s teaching kids cause and effect. But what I realized is that those lights are so dim, the kids weren’t really engaging with it. I knew what Alexis did with the light up keyboard and I thought those are much brighter, she’s much closer to the lights, she can see them better and we should be able to get bright lights for these kids. That’s when I took the idea to Philips to make a LightAide.

How did the project develop?

Rose: Philips built three of out spare parts, things hanging around the lab, and we took them to Perkins and had the teachers work with them and got all their feedback and really watched them, how they used it, what they wanted it to do, how we could improve it, what they needed more of.

What they suggested to us from the very first was we needed more educational content — more early literacy training, more capability for the students to do math and numbers. We made two more prototypes and we used nonprofit educational research group TERC. They helped with the questionnaires and surveys for the teachers and getting information … we wanted to meet at the point where the LightAide would make sense for the teachers.

So it developed from being a pretty simple unit that looked good into something that had pedagogical value as well. What are some examples of kids using a LightAide?

Rose: I got a really great video recently of kid using a LightAide to work on the concept of longer and shorter. We have an activity on it that compares the lengths of lines — the top line has eight dots lit up and the bottom line has five dots lit up — and she could tell by either counting the dots or watching the lights to figure out which one was shorter and longer. What was neat was about halfway in — she’s verbal — the teacher asked, “Tell me how you normally compare lengths of lines?” The student says, “With my fingers.” Because normally she’s a Braille reader and the only way she could interact with math was really with her fingers.

I tell people that LightAide is sort of like giving hearing aids to a hearing impaired person. What we normally do with someone who is vision impaired is we go straight from you’re vision impaired to Braille. What’s missing is there’s a whole lot of people who have vision, but they have low vision. They can’t see as well in the light that we normally give them. But if we give them more light, then they may be able to use more vision.

Courtesy of LightAide

Since you’ve launched the final version, what has been the feedback from teachers?

Rose: Their response is really amazing. The interaction that they get, the interest they get from the students to maintain attention on a task is great. They’ve told me they didn’t have something like this to engage the kids we’re engaging today, we didn’t know these kids knew these things and we didn’t have a way to gauge that they knew these things. That to me is really amazing because that’s exactly what we want. I don’t want someone sitting in front of a LightAide eight or sixteen hours a day. But what I want is for the teachers and the staff and especially for the parents, to go, my kid’s in there. I know that they know this stuff, so let’s push them even harder. Let’s give them that next challenge.

We had a kid who was doing at 9 months old something the occupational therapist was not expecting until 18 months. Here was a milestone a typical peer would be doing at 9 months and the therapist thought this kid is far behind so we don’t start on something until 18 months. Well, lo and behold, this kid was showing, I get this. I know how this works, I know cause and effect and I know if I hit the button, the lights are going to switch off. For me, that’s the fantastic part.

Catherine Rose and her daughter Alexis.

So the kids have this outlet and another method of learning, but it also provides a way to communicate to their teachers and caregivers what they’re capable of.

Rose: Some of the kids who interact with LightAide are nonverbal and this is the very first time they’re showing cognitive capabilities, and it’s cool to watch. I try to not to sound too hokey, but it’s really amazing to hear these stories.

Do you think the LightAide is something people can use during their entire lives?

Rose: We have a lady who’s 35 years old in Australia, who reads Braille and talks but had never seen the shape of letters. She’s using everything on LightAide as it is, but most especially the literacy stuff to learn the shapes of letters and just be able, it doesn’t really matter for her, she’s still a Braille user, she can still talk. But it makes sense for her because she can go oh, that’s what an A looks like. 

Learn more about LightAide by visiting their website and by watching the video below:

Photo credit: Catherine Lacey Photography

Written by Danielle Beurteaux

Read More Stories from Not Impossible Now:

ALS Patient, Husband and Father Voices ‘I Love You’ for the First Time in 15 Years

A Blind Mom Sees Her Newborn for the First Time — Watch the Video

Stay Calm App Can Help People With MS Manage Stress and Pursue Their Dreams

Want to celebrate the human spirit? Like The Mighty on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k
TOPICS
JOIN THE CONVERSATION

To the Bold Woman in the Locker Room Who Taught Me It’s OK to Ask for Help

460
460

It can sometimes only be in retrospect that we realize how poorly we were coping during a certain period of our lives. I was keenly aware that my stress level was high in the summer of 2010. What I failed to appreciate, however, was that I was not effectively handling my strain.

Our third baby had arrived right in the middle of a health crisis for our toddler. Our son, who had been medically fragile since he was born, was now being nourished almost exclusively through a feeding tube, a method that took hours to complete and caused daily vomiting. Our oldest, a preschooler, was a healthy and energetic boy who was suffering the effects of his parents’ divided attention. My husband’s demanding job meant he was often gone before we awakened and was not home until the boys were in bed. I was in the early years of motherhood and, though I could not recognize that at the time, still operated under the assumption that admitting struggle or asking for help was a sign that I was not “mom” enough. An idle remark such as, “You’ve got your hands full!” I took as an irritating criticism of my public performance.

Despite some warning signs from my toddler’s chronic stomach problems and recent potty-training reversals, I decided that the best thing to do one day was to take the three boys to our local pool. It was only after I’d heaved a huge pool bag, an unwieldy stroller containing a fussy 2-month-old and two straggling kids the endless distance from the car onto the pool deck in face-melting heat and humidity that I realized I had no swim diaper for my toddler. “He was potty-trained up until his brother was born,” I reassured myself, “And we will only be here a few hours.” Operating under my guiding principle of proving to the oblivious world that I was “mom” enough, I naturally decided it would inconvenience others far more to ask to borrow a swim diaper than it would if my child had an accident in the pool. Which is, of course, what happened in fairly short order.

I can blame what happened next only on my extreme horror and humiliation that my son had shut down the entire pool. Moments later, I found myself in the middle of the ladies’ shower room with a soiled toddler, a squirming and screaming newborn and no stroller or car seat or even a towel on which to lay him. Not knowing what else to do, I began a futile one-handed struggle to remove the bathing suit, streaming with poop, while my baby screamed and attempted newborn back-dives in my other arm. My stroller may as well have been back at home it was so impossibly far away. As I was desperately wishing someone would just hold my baby, this woman suddenly appeared in front of us. “You need help,” was all she said, in a beautiful German accent.

She was everything you imagine when you think of a 50-years-young, strong, tall German matron. I swear she was even topless. I’d caught her mid some act of practicality and purpose, but when she saw something more urgent, she wasted no time on the extraneous. She removed my son’s suit, then picked up — bare-handed — the poop that had fallen onto the floor and disposed of it as if it were just any ordinary thing to toss away. Next, she washed out my son’s messy little bottom with her bare hand and soap from a dispenser. She then attacked his filthy suit, washing it out in the sink with hand soap until it dripped with fresh-and-cleanness. Before I knew it my little boy was wearing his suit once again, ready to face the now-closed baby pool. She did it all in about three minutes and without any chit-chat or advice, like it was nothing. She was wonderful, and I wanted to cry with gratitude. I wished she was a permanent character in my life, but I just got her for those few minutes. Then, she was gone. Maybe her radar picked up someone choking somewhere.

We went back to the pool where I pretended that my son’s swim diaper had simply leaked rather than admit it had not existed. The rest of the day was unremarkable, and all I could think about was that wonderful lady and what she had said. “You need help.” But her remark was devoid of judgment or condescension. It was simply fact, and a fact that drove her to action. I did need help, and not just in those minutes in the pool bathroom but during that period of my life. Pretending otherwise only made everything harder on the people I loved the most, in service only to a self-defeating form of pride. I had been elevating my own need to feel like I could do it alone above all else, including the effectiveness of my single-handed efforts or the psychological toll it took on me.

I could have gotten my son cleaned up while my baby revolted in my other arm, but it would have been much more difficult, far more unpleasant for all three of us and would have yielded a lesser end result in terms of how clean my toddler and suit would have been. In other words, I could have managed, but I would not have managed well.

There is a difference between continuing to breathe during these times of stress and strain and actually surviving those times. Surviving signifies an overcoming. I was breathing, but I was not surviving. Sometimes during motherhood our hands truly are full, and we ought to recognize that not as a sign of weakness or ineffectuality but as an indicator that we need to accept the extra ones reaching out or that would if we sought them. Our loads are too precious to risk dropping.

It has been five years since that day. Today, my son is a healthy, perfect first-grader and an older brother to three younger siblings. When I find myself struggling to manage my beloved burdens, I reach out for help to get us all through as best we can. When my hands are freer, I try to seek out opportunities to lift others through their swamps of hardship. And someday, I want to be that permanent Fraulein for other people, swooping in out of the blue with nonjudgmental aid. Except for the bare-handed poop disposal, part. Surely getting a paper towel wouldn’t have been too extraneous. Though, I suppose, she would have lost points for style. I have long-wished I could have sent her a thank-you card, if only to let her know how much her kindness meant to me, how she recalibrated my thinking in a way that aided my entire family for years and how she provided an example of something to aspire to.

Fraulein, if you read this, thank you. I would send you hand sanitizer if I only could.

summer 2010 017

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

460
460
TOPICS
JOIN THE CONVERSATION

To the Elderly Man Who Gave My Son a Gift at Physical Therapy

151
151

My son and I were involved in a car accident while we were sitting at a stop sign waiting to turn. I was sore but OK, but my 4-year-old son, Daniel, who was strapped in his car seat, tore muscles
in his neck and had horrible headaches for weeks following the accident.

We were referred to physical therapy. Daniel also has epilepsy and didn’t have great muscle strength to begin with, so we’d done PT before, and it was definitely not his favorite thing.

One day, Daniel was working on strengthening his neck muscles and then finishing with ultrasound to help the damage from the accident. He’d had a seizure the night before, which had exacerbated the injury, and he was sore. He was having an incredibly tough time, and there were a lot of tears. I was silently praying for strength for him to get through the next 45 minutes.

On this particular day, Daniel’s therapist had brought him from the pediatric area up to the adult area to work on different exercises. There was an elderly lady relearning how to walk up and down stairs following a stroke. Her husband was also there, seated, watching both his wife and Daniel. He was nice and clapped for Daniel when he’d get through his set of 30 of each exercise. Just having an audience helped Daniel push through the pain, and I silently thanked God the man was there.

When we were finished with the exercises, we collected our things and were heading back for heat and ultrasound. The gentleman called Daniel over to him, and Daniel shyly walked over. What happened next was shocking and so kind.

The man opened his wallet up, handed my son a $20 bill and told him, “You’ve earned this. You were certainly brave doing all your work here. You make sure to ask Mommy to take you to the toy store so you can pick a prize.”

Daniel gave him a big hug and said thank you. I, of course, teared up and thanked him as well.

The kindness this stranger showed us was incredible. It absolutely made my son’s day, and was something I will never forget.

Daniel and I

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

151
151
TOPICS
JOIN THE CONVERSATION

Why I Love When Your Kid Blurts Out a Blunt Question About My Kid With Special Needs

1k
1k

After the reality of having a child with complex medical and developmental needs sank in, I decided I was going to bring my sweet Connor in his bright blue wheelchair everywhere I could. I wanted to introduce him to everyone and everything that makes this world go round. I knew it’d be tough (like in places that are not handicap accessible, which by the way stinks), but I was prepared. I was going to teach the world about my son.

10841223_10101345195674384_1207597787_n1-300x300

I started noticing the stares from others fairly quickly — from adults and children. I know they’re curious stares, but what hurts the most for me is when certain parents reprimand their child for staring at mine and don’t satiate their child’s curiosity. I admit I was this parent with my oldest son before I had Connor.  I get it. They don’t want to have a rude, staring child so they quickly and quietly chastise them and whisk them away from the situation. And Lord forbid the kid cry out “What’s wrong with him?” Am I right?  Don’t worry, my fellow parents, I understand why you do this.

Play this scenario out in your head…

I’m pushing my blond-haired, smiley, bubble-blowing guy in his bulky blue wheelchair through the grocery store. I stop to browse the latest organic baby food, and your 4-year-old spots us. Her eyes zone in on my guy, and she takes it all in. She steps a little closer. She inspects every inch of Connor’s chair and is wondering why? She’s curious why this boy, who is bigger than her, is riding in this stroller-looking chair on wheels and making crazy sounds. So she tugs on your shirt and loudly asks, “Momma, what happened to him?” You look up to see us just a few feet away, and your heart drops. You think, “Oh God, did they just hear that?” You quietly hush her and hurriedly go on your way, praying we didn’t notice.

This scenario is one that I see way too many times, and it hurts my heart.

Let me tell you why I love when your child blurts out the obvious question.

It gives me a chance to explain my child to yours in a positive way that he or she can understand so they won’t be afraid or sad.  It lends me the time to introduce him or her to my Connor and let them say hello, while I point out similarities between them (they both have blue shoes or both like Thomas the Train). And most important, it provides a moment to ignite compassion and love for people who are different from them. This one tiny opportunity can be a lifelong learning experience. It teaches others that people with special needs are still people with feelings. They deserve our respect and attention, rather than our pretending they aren’t there or our glances of pity.

Often when we hush our child from acknowledging people who are different (simply because we don’t want our child to seem rude), we unknowingly make our kids take on a negative connotation for these differently-abled people. I seek out your beautiful, staring child and anxiously await the question swirling in their mind. I love their blunt little questions because it is the start to acceptance!  Let me say here that not all parents feel the same way (to each their own way of parenting), but I am confidant that the majority of us parents who were blessed with a child with specialties would encourage your child’s innocent questions. My deepest hope is that you are teaching your children to embrace the acceptance of others.

Coyes-Phone-Pics-2014-142-1024x768

Start a discussion with your child about children and adults who are different than them, encourage them to ask you questions and be sure to explain that different is wonderfully OK. I want you to teach them that these children often love the same things, have the same feelings and love to be included just like your child does. When approaching a person with special needs with your child, please express happiness, rather than sadness. A smile, kind wave and hello can make all the difference in the world.

Children truly want to understand why others are different from them, so I think it is our job as parents to encourage their acceptance — and perhaps maybe we can learn from them too.

10967910_10101345273343734_509687733_n

This post originally appeared on Red Stick Moms Blog.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

1k
1k
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.