Lylly Blare

@lylly-blare | contributor
Lylly blogs at about being a "disabled" mother. Her goal is to educate about, advocate for & bring awareness to the ever-expanding community of parents with special needs.
Community Voices

Mindfulness in Disability

Throughout my childhood and early

adulthood, I never gave much thought to mindfulness. Even during my short foray

into Soto Zen Buddhism in my late teens, staying present, being aware of my

body, emotions and mentality didn’t seem like something I should give much

import to.

All that changed, however, at age

28. I was finishing my internship at a public school teaching a

low-functioning, medically-fragile population of elementary students and

working on my thesis for graduate school. Yet, suddenly, all that I’d planned

for and worked towards became null and void. My whole life was turned

completely around by the unforeseen onset of a rare neurological illness which

left me physically disabled and visually impaired. It would take 1 ½ years for

my eyesight to be completely restored and 3 years before I could walk again. I

walked unaided for 15 months before my balance and mobility began to fail

again. Since then, my prognosis is a slow regression of mobility though with no

clear timeline. Since then, mindfulness has been forced upon me as a necessity

and constant practice.

I have been a single parent for all

7 years of my daughter’s life. Since her birth, I’ve progressed (or regressed,

if you’d rather) from a cane to a manual wheelchair to a power chair. Recently,

she and I were both diagnosed with another #RareDisease; a genetic disorder of

our connective tissue. Any parent must take inventory of their physical ability

to handle a given situation. Yet, as a parent with 2 chronic illnesses, I must

maintain vigilant awareness of how much sleep I’ve gotten and whether or not it

was sufficient; I must take stock of any aches and pains that are either

currently beyond or have the ability to surpass my pain threshold; I must ask

myself if I have the energy I need and how I might feel after the birthday

party, field trip, visit to the park, etc. Will joining in be something my body

will pay for later? Will it drain me of energy? Will it cause new aches or

worsen current ones?

It can be overwhelming trying to

determine whether I can do something. I make mistakes often and must leave

events early or I’m bedridden for a length of time afterwards. But I’m getting

better at mindfulness. I’m learning more about my body. What’s surprising is

that I’m not learning so much about my limitations as my capabilities. I’m

stronger than I am weak. Mindfulness is a practice I think can strengthen us

all, whether we’re disabled or not and whether we deal with #ChronicIllness or

acute ones.

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Lylly Blare

Finding Acceptance as a Parent With a Disability

When we think of Valentine’s Day, we think of love. And this year, I experienced that. But it was also a celebration of one of the principles that accompany love – acceptance. Allow me to elaborate: Last year, my daughter began kindergarten at a new school. We found ourselves in a community of people where I was the only person, let alone parent, in a wheelchair. She and I both dealt with her peers’ questions. Some kids were curious in an innocent, friendly, compassionate manner while others would abruptly ask, “What’s wrong with you?” “Why doesn’t your mom walk?” “What’s wrong with her legs?” While my daughter and I are used to being stared at, pointed at and either answering or dodging questions while in public, this was her first experience dealing with all of this amid making new friends and finding her place at her new school. By the time Valentine’s Day rolled around last year, parents were sending out sign-ups and emails for the party that was to take place in her classroom. I helped her pick out treats and cards for her friends. And then, one night during dinner, I mentioned being excited about coming to her party the following week. She glanced shyly at me and asked, “Would it be OK with you if you didn’t come?” “Why?” I asked her. She said it would embarrass her; that I was the only mom in a wheelchair and she just wanted to have fun. I was crestfallen, yet I couldn’t show her how badly I hurt. I told her I understood and only wanted her to have a good time. I promised her I wouldn’t come. She thanked me. It was the first time she’d ever told me I embarrassed her or told me she didn’t want me to join in on something she was doing. While it hurt my heart so bad, I knew it wasn’t about me. I couldn’t let on how I felt because I didn’t want to make her feel guilty. The day of the party, I sat out in the carpool line waiting for her festivities to be over so I could hear all about it. A fellow mother sent me some pictures since I “couldn’t be there.” That was my undoing. I started sobbing. I wanted to be in there watching her smile and have fun. I cried harder as parents and kids began coming out of the school with bags full of treats and cards, smiling and talking a mile a minute. But by the time my little girl got in the car, I’d dried my tears and listened as she told me all the fun things they’d done and what she’d gotten from her friends. Fast forward to this past Valentine’s Day. The same planning began taking place leading up to the holiday. The parents signed up to volunteer time and items and I took my daughter shopping for her classmates. I assumed I wasn’t coming and so made no plans to do so. The night before Valentine’s Day, she asked me if I was coming. I asked her if she wanted me to and she responded, “Of course! I love you! You have to be there!” I was elated! I realized she’d come to a point where she no longer cared about how I move through the world; she cared simply that I was her mom and wanted me to be present. Her friends and classmates have also become less shy and inquisitive as the year has progressed. I wonder if they’re realizing I’m just like their moms, except I parent from six wheels instead of two legs. I feel accepted there, even by other parents who didn’t quite know how to interact with me at first. The party this year was so much fun, and it felt divine to be a part of it; to be wanted there, needed there. The teacher had taken the students out of the classroom so a few other moms and I could set up the party. When the students began filing into their newly decorated room, my daughter spotted me, yelled “Mommy!” and ran into my arms. Our embrace was caught on camera by another parent and it embodies the love my daughter and I feel for each other. This year, along with that love has come major acceptance of our situation and of each other. Isn’t that what love is all about?

Lylly Blare

Feeling Guilty When Parenting a Child With a Rare Disease

Emergencies in my baby girl’s life were something of a bi-weekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. I was told to switch formula time and time again until she was nearly 7 months old, at which time it was suggested she may be lactose-intolerant and we began a soy-based formula. But even then, she continued to have issues with her digestive system. My daughter is now 7 and still has gastric and digestive problems. We’ve since learned she is not lactose-intolerant. In fact, last year, she was diagnosed with a rare connective tissue disorder called Ehlers-Danlos syndrome (EDS) and she has type 3, otherwise known as hypermobile Ehlers-Danlos Syndrome (hEDS). I’ve learned to stop rushing to the doctor or the hospital due to her headaches, sore throats and stomach pains. In some ways, her being diagnosed with a rare disease has relaxed me when it comes to her medical treatment. The more I learn about hEDS and figure out her unique set of symptoms and their severity, the less I tend to “freak out” about certain aches, pains and other things that used to panic me. Yet recently, I learned another lesson: having a child with a rare disease will keep me second-guessing my choices regarding her care. I learned I’ll feel guilty about my decisions surrounding her symptoms and care regardless of what I decide. I’ll think I’ve made the wrong choice for her no matter what. I came to this emotional revelation a few weeks ago when she began complaining of stomach pains again. I gave my pat response I’ve learned over the years and on a Sunday evening; we went through her bedtime routine as usual, even as she insisted that her stomach hurt. The next morning, after she was dressed for school, I happened to caress the side of her head and realized she was warm. Her temperature was only 100.3, but I called school to let them know she wouldn’t be there. She was still saying her stomach hurt but her tone had changed to one of intense pain and urgency. I called her doctor and they agreed to fit us in later that day. I gave her some Motrin and let her lay down. Less than an hour later, I went in to check on her and found her white as a sheet, teary eyed and burning up. Her temperature had risen to nearly 103.0 even after a dose of medicine. I called the doctor and they said to take her to the Children’s Hospital immediately. After several tests and an X-Ray, I learned that she was severely impacted. I was given a prescription for laxatives to give her twice a day for a week and told to continue maintenance laxatives so this didn’t happen again. The two lead doctors said this could have been related to her hEDS, but we can’t know for sure. I sat there waiting for our discharge papers feeling silly all over again. I’d thought she had appendicitis or a similar serious condition and here she was constipated, albeit significantly. When one of the doctors came back in, I told him I felt ridiculous and he said, “Having a sick child can make you doubt yourself. Don’t let it. You’ve done the right thing.” It was then that I realized I was still jumping to conclusions that were far more serious than the end diagnosis (and thank God for that!). I was beating myself up for not taking her stomach pain seriously enough, for not taking action the night before even though if I called the doctor over her every stomachache, it would be a daily, unnecessary occurrence. Rare diseases are tricky enough. Having a child with one is an emotional entanglement of worry, self-doubt, guilt, fear and feelings of inadequacy. I’d rather rush to the hospital and find out it’s simply a symptom of her hEDS than not act on it at all. But I also can’t rush down there each time something comes up. I feel jerked around by her EDS at times, like it’s playing a game and I can’t win no matter how hard I try. There’s one thing I know for sure though — my daughter is uniquely wonderful. She’s strong, creative, funny and intelligent. She’s loved, and she brightens my life and many others. Her having a rare disease is a tiny, minuscule part of who she is, but it makes up a huge part of my emotional focus as her mom. In the end, I’ll just have to remember what our doctor said, and trust myself more.

Lylly Blare

How Health Care Workers Should Treat and Help Rare Disease Patients

Recently, I was out of one of my medications and had no refills left. Of the plethora of medications I take, this is the one that keeps me alive. I have idiopathic intracranial hypertension (IH), a rare disease which affects only one percent of the population. For an unknown reason, my body stopped absorbing my spinal fluid, so it builds up in and around my brain and spinal column. Fortunately, I am one of the 50 percent of patients who respond to this medication, which was the only FDA-approved treatment in my state at the time of my diagnosis nearly 10 years ago. I went into remission after one year of taking the medicine. “Remission” is a commonly debated term among the IH patient community, as well as with doctors and specialists. For my purposes, I use it to describe the ceasing of my IH symptoms and leveling of my spinal pressure while taking medicine. However, in 2015 my CSF (cerebral spinal fluid) levels began to rise again, causing decreased vision, headaches and pressure within my head. My dosage was increased, but I’ve since lost some vision in my left eye and still deal with headaches and pressure at times. Without the medicine, my CSF would increase until I experienced blindness, seizures, stroke or death. So yes, the medicine literally keeps me alive. My pharmacy contacted my doctor’s office on a Friday about refilling the medication but got no response. The pharmacist was kind enough to give me an emergency supply to last until Monday morning. When Monday came, I contacted the office twice through an online messaging system, imploring them to refill my prescription that day, as I was out of the medicine. By the afternoon, my pharmacy still hadn’t received an order to fill, so I called the office. The nurse asked what I needed, and I explained to her the urgency of having the prescription called in that day. When I mentioned what the medication was used for, she replied with sarcasm, “It drains your spinal fluid?” I said, “Yes, I have idiopathic intracranial hypertension.” She said, “Huh, never heard of it. Well, I’ll send this to the doctor and tell him you say it’s urgent.” I got off the phone feeling hurt, frustrated and angry. Just because she’d never heard of my disease didn’t make it nonexistent. Her skepticism could endanger me. Sure enough, I called the pharmacy Monday evening to learn they’d still not received an order. So, Tuesday morning I called the doctor’s office again in a near panic. I learned from the young lady who took my call that the nurse had not sent the message to my doctor — but to his nurse, and no action was taken. I again repeated how important it was that I begin taking this medication as soon as possible and why. I was told that she was marking it urgent and that if the pharmacy had not received an order within an hour, to call back and ask for her specifically. Lo and behold, I was finally listened to. She listened and acted, and I had my medicine in a few hours. I thought about what would have happened had I not been assertive in advocating for myself. I thought about patients who may not know they have that right or feel confident enough to speak up. But when people have rare diseases, there are medications we take that literally mean life or death for us. We matter. We’re important. We deserve to speak up for ourselves. We deserve to be listened to. We deserve to live. And, how about the health care workers? The ones who aren’t knowledgeable about every rare disease? The ones who dismiss patients as hypochondriacs or dramatic instead of listening to them and taking them seriously? This kind of attitude can potentially cause harm for rare disease patients, not to mention their family. So, if you have a rare disease like me, speak up. And if you work in the health care system, listen up. Let’s start giving care to our rare.

Lylly Blare

How I Provide Healthy Meals for My Child Even When I'm Not Cookin'

Like many others, I grew up watching sitcoms on television that depicted joyful, loving families who’d sit down together for meals that were often cooked by the mother. I had no idea I was learning anything; I simply watched for my enjoyment. But, I was learning life-lessons about family dynamics, familial norms and expectations of motherhood. Now that I’m a mom, I realize these lessons learned subconsciously have caused me quite a bit of discomfort in myself as well as guilt and shame about my own ability — or inability — to perform the “expected” duties of a mother. Due to my physical disability, my household doesn’t follow societal “norms.” We have our own “normal.” But although I’m aware of that, I nonetheless experience undeserved and unnecessary guilt because I’ve inadvertently placed expectations on myself as a parent; expectations I’m not able to live up to. Most recently, as my body has deteriorated, I’ve stopped being able to cook in our inaccessible kitchen. I started ordering deliveries from pizza places and delicatessens and we began to pick up more and more fast food. I knew my young child was no longer getting healthy meals and therefore was not consuming the necessary nutrients she needed for her holistic growth. But I felt helpless to change the situation. Until one evening, as I watched her eating yet another slice of pizza, I thought, “It’s my responsibility as her mom to make sure she eats healthy. If I can’t cook myself, then it’s still my responsibility to find a way for her to be healthy.” The next day, I went about a month-long process of info-gathering. I searched for businesses that would deliver healthy, precooked meals to our home. I finally narrowed the list down to two places, one national and one local. My daughter and I decided to try the local company first. We ordered only two meals, so we could try them and decide if we liked the food. We did! So that week, I placed an order for a week’s worth of dinners to be delivered the following Monday. When Monday dawned, I felt excited but also extremely nervous. I assumed that when the meals came, and I placed them in our fridge, I’d feel guilty I wasn’t the one who provided them. But, the food came, and I placed the containers in our refrigerator and sat there staring at the shelf full of correctly-proportioned, healthy meals. I realized, maybe I wasn’t the one who cooked all this, but I am the one who provided it! I’m the one who did all the research into the various companies who offer food delivery services. I’m the one who ordered the meals. I fulfilled my responsibility as a mom to provide my daughter with healthy food! Many times, for me, it’s all about my perspective. When I find myself feeling negative about a situation, there’s nearly always a way to turn my attention to other aspects of it and see the positive side. I don’t need to follow societal norms. I’m not obligated to live up to anyone’s expectations. My parenting shouldn’t be judged based on how I get things done but rather that I do. My daughter and I have been eating delicious, healthy meals now for three weeks and I’m proud of myself for getting this done, for making the changes necessary to ensure that her needs are met. We want to hear your story. Become a Mighty contributor here .

Lylly Blare

Schools Can Accommodate Parents With Disabilities

If you are a parent, you know the feeling of pride that comes from watching your child perform in a school play or sing at an event; you’ve experienced the joy that occurs when you visit the classroom or engage in school activities with your child. But imagine if you had to stay outside the classroom door or couldn’t make it into the auditorium to watch the show. Imagine the feelings of guilt, sadness and separation you’d feel if you couldn’t participate the way every other parent was able to participate. Unfortunately, this happens more than you may think. When a parent uses a wheelchair, or doesn’t have the ability to climb stairs, there’s often no choice but for them to miss out on various aspects and events in their children’s lives. For no other reason than structural inaccessibility, some disabled parents are placed in the awkward position of not being present in their children’s affairs. I’ve had to hear about my daughter’s classroom activities from other parents and it left me feeling embarrassed, guilt-ridden and upset. I’ve heard other “wheelie” moms express anger, frustration, grief and humiliation at having to miss out on things because they couldn’t gain access into the venue. When my daughter first started kindergarten at her new school, there were plenty of disability parking spots available, but none were van accessible. The principal and school security officer both told me to simply make my own spot or take up two of the non-van spaces. So for the first few months of school, that’s what I did. The school is extremely wheelchair accessible once inside – the entire layout of the lower and upper floors flows together via ramps and an elevator is in place. I’m able to go anywhere inside the school I need to go. But there was only one entrance that was level for my power chair to go through and it’s located at the main entrance, which is two schools down from the elementary school (the school itself contains preschool through high school). I would try my best to park near the main entrance whenever I arrived for school activities and then make my way through the high school and middle school to the elementary wing. I was able to attend all her class parties, her performances and the like. It was wonderful, and I had no complaints. I was simply happy to be able to go and be! During the third month of fall semester, the principal told me they’d put in a van spot for me right by the elementary school! I was excited and felt quite fortunate that the school had made accommodations for me. The only problem was that once I parked, I still had to trek up to the main entrance to get into the school. They had not realized there wasn’t a way into the elementary school for me. I told them it was no big deal, and this was true, but on rainy days and as the weather got colder, it wasn’t the most ideal. Right before Christmas break, I arrived one afternoon to pick up my daughter and a couple of faculty members approached me. They asked if I’d seen what the principal had made me. Apparently, the principal had decided not to waste time waiting for approval and necessary funds from the budget – he’d spent that day building me a ramp into the elementary school! I was moved to tears! It sent me the message that I was just as important as the able-bodied parents; that I was wanted and needed there; that I was respected. They recognized my need to be with my child. My daughter’s school made it possible for me to have the same access as the other parents. But it was what the Headmaster said to me that really meant a lot: he told me yes, it was done for me, but it would be there for other parents like me in the future. So it seems that while they have given me two huge gifts in the form of making the building more accessible, I in return have given them a gift – the gift of awareness. I’m so thankful for all of this! Using a wheelchair should never prevent me from being present in my daughter’s life, but in reality, it has and likely will in the future. But as society becomes more aware of the existence of parents with disabilities and is educated about the need for accommodations, we will gain equal access in places such as schools, gyms, auditoriums, etc. There will be a day when we no longer experience our children’s lives vicariously, but are fully engaged as we are meant to be. We want to hear your story. Become a Mighty contributor here . Image provided by contributor.

Lylly Blare

Changing My Perspective as a Mom With a Disability

Typically, when my daughter receives an invitation to a party, I’m excited. I’m thrilled for her and look forward to having fun together while celebrating a special occasion, usually a birthday. But then a birthday invitation came for a slightly older friend who was having her party at the skating rink. There are several physical activities I miss doing since becoming disabled – water skiing, hiking and roller skating being a few. And there are times I feel guilty about my lack of ability to instruct my daughter in not only these but other activities (hula-hooping, jumping rope, etc.). Before receiving the skating party invite, I would’ve told you that I would love to take my daughter to the roller rink, but I quickly found this to be untruthful when faced with the reality. Seeing the invitation, the words “Roller Skating Rink” kept jumping out at me as if mocking me for my inability to participate, to show my daughter how to skate, to enjoy this activity with her. At least, that was my initial perception. I knew I could get on the rink with her in my power chair if the building had a portable ramp, but was wrapped up in anxiety over being stared at and put on display. I worried about my little girl not enjoying herself because of people staring, pointing, etc. I didn’t want to go and be the object of discussion; I just wanted to party at the rink with my kid. I was explaining all of my worries and stress to a dear friend who listened patiently before saying, “You know, Lylly. If anyone does stare, perhaps it’ll be kids who’ll look at your daughter with longing, wishing their parents were on the rink with them. Or if adults stare, maybe it’ll be because you’re out there with your daughter instead of sitting on the sidelines observing.” Bam! I hadn’t considered that at all! The day of the party, after acquiring skates for my daughter, I asked to speak to the manager and he put out the portable ramp. She held on to the back of my power chair and we went around slowly so she could adjust to the feel of being on skates. Her little friend, the birthday girl herself, wanted to hang on as well and so the three of us went around and around. We had such a great time!! I forgot all about the other people in the rink and was delighted to be out there with my little one and her friend! The few times I looked at anyone, they were either smiling as we passed them or obviously into their conversations and not paying us a bit of attention. When I got the invitation, I allowed myself to forget that this life is our normal. Being stared at is normal, at times to the point that we don’t often even notice it (and I tend to notice it more than my 5-year-old anyway). I almost worried myself silly, and if my friend hadn’t helped me gain a new perspective, I would’ve shown up at the party feeling stressed instead of ready to take on the rink. It doesn’t matter how I spend time with my daughter – it matters that I spend time with her. And we usually have a blast! — just as we did at the skating rink. In fact, it’s on our summer to-do list as a place to return and enjoy one another’s company! We want to hear your story. Become a Mighty contributor here .

Sarah Davis

When 'American Ninja Warrior' Featured a Contestant Whose Wife Has EDS

Article updated August 1, 2019. In 2015, Michael Stanger of Utah was a contestant on “American Ninja Warrior.” His story was compelling as he was competing for his wife, Enedina, who has Ehlers-Danlos syndrome. At the time of airing, Enedina was using a wheelchair due to EDS. In July of 2017, Michael went back on “American Ninja Warrior” and his wife Enedina was out of her chair and doing great. She credits diet and exercise for her two-year change in status. This is amazing. Don’t get me wrong, I’m ecstatic for Enedina, but as someone with EDS, I have to address some of the results of this episode.   I should preface all of this by saying that I love that the words “Ehlers-Danlos” are being said on TV! I love that more people are becoming aware and learning about this condition as it’s been so far from the forefront for so long. TV shows like this one and a recent episode of “Grey’s Anatomy” are a huge leap for those of us who have EDS and have to spell the condition several times to doctors and medical professionals who should have heard of it by now. I should also note that it’s never made clear what type of EDS Enedina has. I have hypermobility type, which causes chronic dislocations among other issues. I dislocate between seven and 30 times a week. The small ones I can handle (toes, thumbs, etc.) but the big ones (like my knees and hips) take more out of me. Since the airing of the show last week I’ve been beyond lucky to have friends and family reach out and ask if I saw the episode. The first thing they always say is “Hey, I saw someone on TV with what you have!” I love, love, love the enthusiasm when they realize they recognize my disorder. But because of her transformation, the next part is hard. “Did you see she’s better?” Well yes, but no. “Did you see it’s because of diet and exercise?” “Did you notice her husband does (this product) and she’s on (this regimen) that I happen to sell?” “Can I help you get better too?” Ugh, thanks but no thanks. Here’s why. Let’s address this. First, it’s important to note that there are several different types of EDS. Our mascot is the zebra. No two zebras have the same stripes. Each one is different. The same is true for EDS patients. No two are alike. Yes, we share a common thread in that our collagen is defective, but we aren’t the same. I dislocate but I have EDS friends who have heart issues, skin issues, etc. No two are alike. We are each unique. This is part of the reason it’s so hard to diagnose and treat us. Second, she’s not cured. This is also really important. She has a much better quality of life, I’m sure, but she’s not cured. She’s found something that works to mitigate her issues, but she’s not fixed. Diet isn’t going to fix my DNA. Exercise isn’t going to fix my broken collagen. There arelots of EDS patients who find that going gluten-free or dairy-free is helpful for them. For me, I cut way back on my sugar intake. That helps me. Exercise is tricky. For some, exercise is necessary, for others it’s impossible. I was doing physical therapy for a while and it helped, but then I dislocated and damaged my already injured knee. No physical therapist will touch me and help with anything until it’s fixed. I’ve had three surgeries on this knee already so I’m at a standstill. We are hoping another surgery will help or fix the issue but for now I’m back to almost zero exercise. And yes, I feel a difference when I don’t exercise, but it isn’t for a lack of wanting – I physically can’t right now and that’s OK. Lastly, I heard her husband does a popular exercise/nutritional program. That’s awesome, for them. I appreciate that my friends who do the same saw this and think it might help me. I absolutely love that you think of me. But that’s not for me. I have a team of doctors helping me. I have supplements based on my needs. When and if my team feels something like this would help me, I promise I’ll reach out. I know what you do and I respect the heck out of you but please know right now that isn’t going to fix my DNA and I am doing OK with where I’m at. So thank you, but it’s not helpful. I wish all the best to Michael and Enedina and am beyond grateful to yet another network for portraying someone with my illness. And again, I appreciate how much I must mean to you when you email, text, mention or message that you saw this and thought of me. I love the awareness! But please know, I’m not her. I’m glad this worked for her but you don’t know her whole story any more than you know mine, so please stop the message after you say “I saw EDS on TV.” We want to hear your story. Become a Mighty contributor here.

Lylly Blare

Don't Feel Sorry About My Disability

Upon hearing the story of what happened to me at age 28 (getting sick; the beginnings of physical disability), most people look at me with pity in their eyes and sympathy stitched on their faces, and tell me how sorry they are. I understand this is a response born of compassion and of a desire to comfort. But it also stems from the inability to relate, ignorance of how this part of my life experience has played out and affected me, and misunderstanding of my feelings concerning my illness and disability. You see, I am not sorry about becoming ill and disabled. And if I’m not sorry, why should you be? It’s true my life changed completely back in 2009 – all the dreams, goals and plans I’d had for myself fell out of reach; all the hard work I’d put into earning my Master’s degree and being a Special Education teacher became meaningless; life as I’d known it for 28 years disintegrated.  At first, I admit to being full of self-pity. I felt wronged by life, a victim of cruel circumstances. I felt depressed, angry and hopeless. One evening, I was crying out through sobs and tears, “Why me?” over and over. All of a sudden, a new and seemingly alien thought occurred to me – why not me? I was perfect for this situation! I knew how to modify my environment, sometimes with ordinary household items; I knew the services and organizations that were at the disposal of the local disability community; and the whole time I thought I’d been teaching, I’d been the student. The children I worked with had shown me how to be determined, motivated and enjoy the life I was given. I could choose to wallow in grief and pity or I could embrace the new circumstances of my body and do my best with what I still had. Since then, I’ve gone through many stages physically, mentally, emotionally and spiritually. I’ve learned a lot about myself, about how strong I am, what I’m able to handle. I’ve learned new coping skills. I’ve learned to accept my illness and prognosis and have arrived at a peaceful place with it. I’ve learned how to use my voice to advocate for myself, and now for other parents with disabilities. I’ve learned how to educate and be effective in my community. I’ve learned that my abilities and strengths far outweigh my limitations and weaknesses. I’ve also been brought so much closer to God. I didn’t even believe in Him back when I was diagnosed, but can look back at that night and get chills because I now believe He loved me enough to be in the ER with me that night, regardless of how little I thought of or felt about Him. The director of the ER had written his doctoral dissertation on my extremely rare neurological disease and was able to diagnose me, which not only brought back some of my eyesight and saved my life, but ended the three-month-long search for what was going so wrong with my body. My faith is strong these days and carries me through the difficult times, the scary times and even the times when doubt may creep in just enough to cause worry lines to form on my face. I believe He’s watching over me and loves me very much. He doesn’t see my failing body, my medical equipment or the awkward way I sometimes wander through the days – He sees my heart. To Him, I’m perfect. And, most days, I’m able to see myself through His eyes. Because of getting sick and losing so many abilities of my body, I’ve been able to find gratitude, which I honestly didn’t have much of before becoming disabled. I’d spent 28 years taking every moment and each movement for granted. Now I savor each day and rejoice in what my body is still capable of doing. This has been yet another gift from what so many people seem to view as “a tragedy” in my life. Please don’t feel sorry for me. For 28 years, I lived in a healthy, able body but had a broken, damaged and deteriorating spirit. My outlook on life was negative and my self-esteem near non-existent. Since my diagnosis, the situation has reversed itself. Now, my body doesn’t work so well, but my heart and soul are overflowing with joy, peace, contentment, self-confidence and a zest for life. I’m grateful for each day and enjoy every moment. How could I be sorry about that? We want to hear your story. Become a Mighty contributor here . Photo via Thinkstock.

Lylly Blare

Lessons From My Dad About Invisible Disabilities

On December 4, my dad passed away suddenly after a moderately short battle with a chronic illness. The week of Thanksgiving, my family was told he was in complete organ failure. His body was filling with fluids released by his liver; his hernias had shifted and fluid was going into his lungs. We knew he was not going to be with us for more than a year, but were not prepared when he fell, causing his body to shut down. He died quickly, and I’m thankful he did not have to suffer more than he already had. In reflecting on my dad’s illness and the effects it had on his body, I realized I’d made quite a few mistakes during his last year – especially within the months leading up to his death. When people see me park in disability parking, it is obvious when I get out of my van that I’m honestly, legitimately and legally permitted to park there. When I use designated stalls in restrooms, no one questions my necessity for those accommodations. My illness and my disability are not invisible. Rather, they are glaring and direct. My dad, however, did not use adaptive mobility equipment until one month prior to his passing. At the end, he had trouble walking and required the use of a rollator. Before that, when he’d park in a designated spot, here is what people saw: an obese man with no clear physical limitations walking into an establishment. There were times, early on, that I (embarrassingly enough) bristled when I saw him park in disability parking. Before knowing what was wrong with my dad, I thought he used obesity as the criterion to gain certain accommodations. I hate that I thought these things and am loathe to admit them, but am sharing in hopes that someone who reads this will better understand my overall point. My dad was actually not obese. He had several large abdominal hernias and as I’ve previously stated, his body was filling with fluid. If a person were to look at his face, arms, legs and neck, it would be obvious that he was in fact thin. The “weight” he carried was solely in his torso. Furthermore, to a stranger it may have seemed that he walked just fine. But those of us around him watched helplessly as each step caused his breathing to become more and more labored due to the fluid build-up in his lungs. There are times when people make assumptions about what it means to “look sick.” Assumptions are also made about what qualifies as a “disability.” I’ve heard people grumble about “that heavy-set woman using the accessible stall” or “the fat man who just needs to lose weight so he won’t be disabled.” Those exact thoughts haven’t come into my head, but I’ve already admitted that I myself, as a member of the disabled community (and one who doesn’t need to carry a membership card since I’m rolling along through life) have also wondered why a seemingly healthy and able-bodied individual is using a space or stall or other modification meant for “us.” This is plain prejudice, I admit. It’s stereotyping, generalizing, assuming and jumping to conclusions about things I have no right to nor expertise in! Whether you are chronically ill, disabled or healthy and able-bodied, I ask that we all cease to pass judgments on people who use services for the disability community. There’s usually a lot more to the person’s story than their body is able to convey to our untrained eyes. In Loving Memory of my dad, Rob Sasser, who taught me a lot, even when he didn’t know it. May 12, 1952-December 4, 2016 Follow this journey on Modified Mama. We want to hear your story. Become a Mighty contributor here .