When a Woman I Initially Judged Ended Up Saving My Daughter

214
214

Navigating the world of special needs has been lonely, rewarding, incredibly awkward and surprising. My daughter has an unspecified leukodystrophy, meaning she has a specific disease category, but they don’t know which gene is affected. She doesn’t walk or talk and has daily seizures. I started out in a Rett syndrome support group because my daughter fit a bunch of the condition’s symptoms, and even after she was almost surely under the umbrella of leukodystrophy, I stayed in the group because the Rett moms really know their stuff. They know more about seizure meds than I ever will.

We kind of dabble everywhere. We’ve been to an autism clinic even though she doesn’t have autism because they also treat developmental disorders, and I like their attention to usable forms of B vitamins. We’ve done Therasuit, developed by a parent of a child with cerebral palsy and modeled after a suit made by NASA for returning astronauts. We do therapeutic horseback riding and have regular visits to the chiropractor. There are specialist appointments, therapy, seizure meds, and I now know how to keep everything sterile while aiming a catheter through a tangle of kicking legs and arms that think we’re just playing around.

For a while we went to an interesting chiropractor and acupuncturist. I started out going just for me and thought it might be good for my daughter, Maddy, to try acupuncture. The man had so many certifications on his wall from reputable places, but there was just something a little off the beaten path about him. He even forgot about one of our appointments, and we stood outside wondering if he was inside and fell asleep or something. His office was in a tiny creaking house surrounded by bending old trees and a cracked sidewalk breaking into pieces around large tree roots. The air always smelled like damp soil when I walked up to the house. It took a while to get down the path with Maddy’s stroller.  This place was not at all accessible for people with disabilities.

The inside of the house-office was falling apart, with the tiniest cluttered kitchen and three small rooms with tables for acupuncture or a chiropractic adjustment. There was a larger open waiting area slash yoga room slash exercise area with a couch and an exercise bike. Everything was a mess. There were piles of books, random plants hanging everywhere and pictures of what looked like famous teachers and religious deities, their frames falling apart.

Dr. T was just as messy as the house. His brain was constantly going and he talked a lot. He had the look of a professional hippy. He’d be wearing a cool shirt and there would be a hole in the arm or pants that looked expensive but had a torn pocket or something that made them just a little less than perfectly presentable. He didn’t care about appearances, so I’m sure it didn’t matter to him, and it made me like him more. He had a nice (and seemingly younger) girlfriend who taught yoga in the house-office. I saw her as a spacey kind of girl who does things like dance naked and have a name like “Sunbeam” (she was never naked at the house-office).  They were planning to get married in the near future. I don’t remember her real name.

I never completely bought into everything Dr. T was selling, and he wanted to convince me I could feel better overall if I could trust in what we were trying to do. He was one of those health doctors that I mostly love. But I just can’t bring myself to go all-in on most things, so I kept a safe distance between myself and the peaceful abyss of holistic healing. I kept an even safer distance for my daughter. I was extra conservative whenever he wanted to try something, and I never left her side. I’m overly protective of my kids, and I don’t feel guilty about it. But he was great with Maddy. She liked him and would babble away when we saw him. She’d sit there in her little stroller and with acupuncture needles sticking out of her head, giggling and loudly babbling while he talked to her.

DSC07335

I’ve always been amazed by people who naturally get special needs kids. I think this is because I’m still awkward and don’t know what to say half the time. I have a special needs kid of my own and still feel like I sound like a weirdo when I talk to other special needs kids. Sometimes I’m good, and sometimes I’m awkward. Dr. T really got her. He was amazed by Maddy and her beautiful soul. That’s something I could agree with.

When Maddy was 4, we ordered a special stroller that could support her and still fold up to put in the trunk.  There were months of insurance denials, and in the meantime, the medical equipment company loaned us a larger version of the stroller so we could get around. We had the too-big loaner stroller one day and were going up the broken walkway a little early for our appointment. Dr. T wasn’t there yet, and the door was locked, so we had some time to wait outside under the trees. I rolled the stroller backward over the stoop, and when I did, the stroller started to close. One of the straps had gotten stuck between two metal pieces when I opened the stroller, so it hadn’t locked into place. Now it was closing with Maddy in it. Her bum slid down into the space that was widening between the seat and the back of the chair. I pulled on the seat to try to open it, but that just pushed it against her legs and back. Within seconds she had folded completely in half.

I couldn’t open the stroller, but I couldn’t let go or she would slide further down. I could no longer see her face. I thought of a Rett mom who had just mentioned this happening to a chair in the tub and, while she was mortified, others were talking about how funny it sounded. Now I understood her feeling of absolute helplessness. I was alone in the yard outside a locked house away from the street and could no longer see Maddy. Her face was pressed against her legs and the stroller could not open or close. I thought about tipping the stroller sideways so I could lay it on the ground and help her, but it was too bulky. I had no idea if she could even breathe. Everything was so quiet, and I was in a panic. I heard myself yell “Help!” to no one.

And then I heard Maddy giggle. That told me she was alive, but she was still stuck. At the same time, Sunbeam came out of the house. She heard me yell for help and came outside (barefoot, of course) and immediately helped me free Maddy from the stroller. I’ve never been so relieved to see someone. I gave her a big hug and fully loved her from then on.

That was my reminder that strangers who I initially judged could be the exact people who help me without hesitation during my most desperate moments. She saved Maddy and me.

DSC08995 (1)

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.

214
214

RELATED VIDEOS

JOIN THE CONVERSATION

To the Stranger Who Saw My Daughter's Wheelchair Fall Apart

3k
3k

Dear Deanna,

We met you on our first trip to the local YMCA to go swimming. I was on edge all morning, worrying about going to a new place — getting in and out, getting Lucy changed, hoping the relaxation of swimming would not make her poop in the pool… the usual. I practiced reclining her wheelchair several times in the hopes I could change her in and out of her swimming suit in her chair. I thought I had all bases covered. But then I pulled into a side street parking spot to realize I had no change for the meter.

I felt irrational panic, and then in the two minutes it took me to run into the Y and get change, a mean old meter maid gave me a ticket, even though she saw I was putting money into the meter. I nearly cried, but I pulled it together for Lucy and soldiered on.

Unfortunately, as I was reclining the wheelchair, just as I’d practiced, a crucial screw fell out, leaving the back of the wheelchair falling apart in my hands, as all 41 pounds of Lucy bore down on it. That instantly brought on the tears. I stood there for several minutes trying to get the screw back in while preventing Lu from falling backwards. Sweat was pouring down my face and sides. I just didn’t know what I was going to do. I couldn’t let go of the chair or Lucy would fall, but I couldn’t get her out of her chair to safety without letting go. I was in a full-on meltdown right there in public.

I like to try and always remember that each person we encounter has their own things they’re dealing with, whether they’re obvious or hidden deep down. Well, on this day, all of my stuff — my struggles and challenges — were on display for the whole world to see. However, the only other person around was you, Deanna.

image1 (2) When I was just about to crumple in defeat, I looked up, still bawling and sweating, and saw you washing your hands at the bathroom sink. When I called out to you for help, you just came running. You came running with your arms outstretched asking what you could do. After you helped me get Lucy out of the wheelchair, I couldn’t even believe my eyes. You lovingly cradled Lucy in your lap, sitting there in the floor of the locker room, as if you cuddled my daughter every day.

As I continued to try and fix the chair, you just calmly talked to me and Lu as if we’d been friends all of our lives. And when I couldn’t seem to get it fixed, to my further surprise, you helped me lay Lu down on a towel, since she can’t sit up well on her own, and proceeded to squat right down beside me to try and figure out how to get the screw back in. When we discovered it was bent, I couldn’t believe my ears when you told me to go get Lu in the pool and you would get it fixed for us. At this point I was so beside myself and just so grateful for your help. I listened to you.

As Lu and I sank into the warm pool, the anxiety and stress seemed to just melt away from us. We instantly began to smile again and even laugh. The pool was closing soon, so our swim was brief but wonderful. And then, toward the end you wheeled in Lu’s wheelchair, beautifully returned to the upright position. I asked your name and thanked you profusely, and you simply said I was welcome and you were gone.

I had never seen you before in my life, and months have passed and I still have never seen you again. You’d told me that usually you swam early in the morning, but that day you chose to swim after work, and even then, you almost just drove by the Y and went home.

I will never, ever forget how loving you were to my daughter. She is a child with so many needs that I often see intimidation and uncertainty in the eyes of people who see her just as a child with a disability. But you Deanna, you just saw her as a child. She was just a child whose momma was in need of help, and you swooped in with your loving arms and your huge heart and just helped us. I will never forget you or the day a stranger treated us like family.

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.

3k
3k
TOPICS
,
JOIN THE CONVERSATION

To the Couple Who Noticed Me Feeding My Teenage Daughter at IHOP

118
118

Peta Minerof Bartos's daughter When my daughter was 16, she had a day off school that I’d forgotten about. I, meanwhile, had planned my own day off. Attending therapy had been on the agenda.

Why couldn’t I leave a 16-year-old at home, you wonder. Simple. My daughter copes with Rett syndrome, a devastating neurodevelopmental disorder. She’s nonverbal and cannot walk without assistance. Even sitting in a typical chair can be dicey, as her balance is poor. She drinks from a bottle — the only self-care task she can do on her own.

Desperate to have some meager amount of quality time with her — between all the things I needed to get done — I thought of something she could enjoy. The International House of Pancakes. She loves breakfast food. So, between errands, I stopped for breakfast at our local IHOP.

Slowly, I guided her through the double doors (curse you!) and thankfully, the staff sat us immediately. Picture menu? Thank God. I could see her eyes scanning the choices. We quickly ordered and hoped for the best. I put on her bib and cleared away anything on the table so she wouldn’t accidentally push it off. She did OK.

Our meals came dripping with delicious but sticky syrup. Oops. Forgot about that. Feeding her requires magic hands to cut up the food into small enough pieces to prevent choking. Then I slowly feed her bite by bite. About every third bite, I sneak one in from my meal. And a blessed sip of coffee.

I forget sometimes how it might look to an outsider — certainly not pretty. My daughter’s vocalizations, to me, have meaning. To others? I’m sure they can be rather irritating. This day, her favorite food — pancakes — kept her giggling. We finished our meals without any major fiascos. Sigh of relief.

I then realized I would need to leave her at the table while I paid the bill. Panic. She could fall in a restaurant chair. She might shriek. I was alone with her, and I was torn. How was I going to manage this? It’s why I never usually do spur-of-the-moment things.

As the waitress came by, I asked for the bill. And she told me the patrons at the table next to us had bought our breakfast. Why? Because they thought it was so loving the way I was caring for my daughter. I get tears now, even years later.

Peta Minerof Bartos and her daughter

118
118
JOIN THE CONVERSATION

How We Helped Our Son With Autism Attend a Birthday Party

48
48

Typically it’s not a hard sell to get a 7-year-old to go to a birthday party with their friends. Unfortunately that’s not always the case when said 7-year-old is on the autism spectrum.

This is further exasperated when the aforementioned party is a play and may involve costumes (or, as my son would put it, “mascots”). For years we’ve had to be creative with sporting events, amusement parks and other venues where some person dressed as a cartoon character may invade my oldest son’s personal space and send him into anxiety and terror.

Some may look at this as a problem.

What we’ve come to realize, however, is that after countless bouts of arguments, tantrums and fits of rage there can be a way. It just takes a little coercing.

tumblr_nix4acPrMP1u1p64mo1_1280 (1)

First off: What works for us is when we don’t let him pull the “leave me home with Mommy/Daddy/Grandma” card. He has to know this is an obligation. We explain that we’ve already made a commitment to be there and that it would be socially irresponsible to cancel at the last minute. This gives us an opportunity to teach him a little about social norms as well. We don’t overload him, though. We explain that he can stay in the lobby or towards that back and that he doesn’t have to be where the action is. This at least gets us in the door and eases the transition.

Once inside, we ease him into the activities. By showing up early, we can take a look around and see that it isn’t so scary. We talk to the staff and see if we can get a feel for the environment. We maybe take a staff member aside and explain our child’s developmental needs so they’ll be more attentive.

Finally, once he’s comfortable with his surroundings, we step aside and let him get in his element. That’s when we expect to see some fantastic achievements. Getting him out of his comfort zone will lead to his ability to engage with others and develop his skills and talents beyond his or our expectations.

This post originally appeared on resurgencewebdesign.

48
48
TOPICS
JOIN THE CONVERSATION

To the Mom Whose Child's Brain Was Just Described as 'Abnormal'

2k
2k

When I was told that the white matter in my daughter’s brain looked abnormal when she was just 6 days old, I was devastated. I didn’t think it could get any worse, but then at 7 months old, she was diagnosed with Infantile Spasms. As tears rolled down my face, I listened to doctors ramble on, using buzz words like “diminished potential,” “catastrophic childhood epilepsy,” and “significant developmental delays.” These terms left me with more questions than answers, so each time I asked, What will life be like for Bexley? I wanted them to put those terms into concrete examples — like, Would she walk and talk? Where would her cognitive abilities fall? Would she have friends? Both times they were unable to provide the answers I wanted to hear; my mind quickly jumped from one worst case scenario to the next.

IMG_1272 (1)

Bexley is now 15 months old. We’re still trying to make sense of her diagnosis. While I still can’t answer many of those questions, here are some things that I so desperately needed to hear on those difficult days:

  • First, take a deep breath. You’re overwhelmed and scared right now. You’re a planner, and this wasn’t part of your plan. Things like this aren’t supposed to happen to you. You took great care of yourself while pregnant and had a perfectly healthy pregnancy. You’ve just been thrown a major curveball. I can’t tell you that it won’t be hard. I can’t tell you that you won’t worry like you’ve never worried before in your life. However, I can tell you that it’s not the end of the world. Your life will still be filled with happiness, even if things are different than you had planned.
  • Focus on the inches, not the miles. Milestones are everywhere. It will hurt when you see same-aged peers begin to surpass Bexley. It will feel like a kick in the gut when you see babies significantly younger than her begin to do things she can’t do. There are days your heart will ache because it seems so unfair that she has to work so hard to accomplish things that seem to come so naturally to other kids. However, all those feelings will disappear every time you see her do something new. I’m not just talking about the big milestones; I’m talking about the smallest little improvements in her development, like beginning to bear weight on her legs, waving “hi” to people at church or clapping for herself when you praise her. Those moments will fill your heart with a kind of joy you’ve never experienced before. The kind of joy that makes you want to jump up and down and share the good news with everyone you know. These moments will make all the hard work worth it. In those moments, you’ll also realize you have actually been given a gift because you will notice, cherish and celebrate every little improvement in her development. Inches eventually turn into miles, so focus on and celebrate the journey without wasting all your time worrying about the final destination.
  • Your daughter has the most infectious smile and giggle. Her smile and giggle will continue to be the best medicine. On the days when you’re worried or not sure if you’re strong enough to help her face the challenges, her smile will give you all the strength and reassurance you need. When she smiles at you, you will know that no matter what the future holds, it will all be OK.

When you remind yourself of these lessons, you will feel like the luckiest mom in the world to have been given such a beautiful, brave and determined little girl to take care of and love!

Screen Shot 2015-01-29 at 10.06.47 AM

Want to end the stigma around disabilityLike us on Facebook.

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

2k
2k
TOPICS
JOIN THE CONVERSATION

What You Can Learn From the Scariest Day of My Life

224
224

May 12 was the scariest day of my entire life.

My mother called me on my cellphone while I was at work and told me my son, Ethan, wasn’t acting right. His lower body was ice cold, and his upper half was on fire. He was going in and out of consciousness, and his eyes looked swollen like half moons. I told her to put him in the car and meet me at Winchester Hospital. She ended up having to pull over on the way there and call 911. A friend from work drove me to Winchester, and I sobbed the entire way. Ethan’s dad flew down from New Hampshire, and as soon as the ambulance arrived at the hospital, they took us to his room.

I saw about seven people around Ethan. I took one look at him and lost it; he was pale as a ghost, moaning, and every muscle on his body was twitching. When he did manage to get something out, it was gibberish. I just kept yelling, “Help him! Somebody help him!” Ethan’s eyes were glazed over, and he continued to twitch. The ER doctor said Ethan needed to be transferred to Mass General. As we waited for the ambulance, I stood over my son, rubbing his head and crying. I had no idea if he could hear me, but I told him how much I loved him and that he’s the funniest, happiest little boy I know. My mind was racing, and I kept thinking, Please, God, don’t take him yet. He has so much more life to see. He isn’t ready to go. I’m not ready to let him go. It’s not supposed to happen like this. I expected more warning. Please don’t take him.

The ambulance arrived. I felt like I was in a dream. I was lightheaded. All I could think was that Ethan was never going to wake up again and if he did, he wouldn’t be the same.

At the hospital, Ethan’s eyes remained half open. He already looked better and recognized me. Part of the neurology team came down and asked a bunch of questions over and over again. They said it didn’t sound like a seizure, but they ordered an EEG just to rule it out. One of the residents asked what Ethan’s official diagnosis is and when I told her, she said she’d never heard of it. All I could think was, We are in a world renowned hospital and we are teaching them about a disease. Shouldn’t it be the other way around? 

We waited all day as Ethan had blood drawn and an EEG done. He slowly became more and more alert, and we knew he was on the mend when he farted and laughed. He loved having Doritos fed to him and that he got to drink Sprite. He asked so many times to go home. Every time a nurse or doctor came near him, he cried or told them to go away.

Finally the results came back; they found no seizure activity and all his blood work was normal. We still have no clue what happened. Maybe progression of his diseases (muscular dystrophy and leukodystrophy) or just a one-time thing. I’m praying it’s the latter. We were able to take him home, but we have to go back to the neurology department soon. They upped one of Ethan’s medications and told us to call 911 if his mental status changed again.

Ethan and I were up all night. His body wouldn’t stop moving, and he couldn’t stop talking. He became aggressive a few times, which is not like him at all. He finally fell asleep for a few hours, and when he woke up, he was pale and his arms were having tremors. I held back tears as he tried to feed himself cereal and couldn’t even get the spoon in his mouth. He looked at me as this was happening and said “Mom, I just need patience.”

I was taken aback. It’s true; if he wanted to feed himself independently, he would need extra patience today. He wouldn’t let me feed him, and it took him over half an hour to eat a small bowl of cereal. I had to refill the bowl a few times because a lot fell on the floor, but he finished his Frosted Flakes. He’s slowly getting back to himself, still weak and shaky but he’s still laughing at everything.

EthanGentry

When people tell me they’re sorry this is happening to us, I tell them not to. There’s no reason to feel sorry. Feeling sorry is not going to change our situation. All I ask is that you enjoy your kids, your family and your friends. Tell that person you love them. Hug and kiss them. Do what makes you happy. Leave that dead-end job, leave the wrong relationship. In the end, just make sure you are happy. Life is so short. Life is precious. Every breath you take is amazing. Be thankful when you wake up every morning. Ethan is happy no matter what his situation. He knows how to live. Wake up and look around you. Make sure you are truly living and not just going through the motions of life.

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.

224
224
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.