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My Dad Died Before My Wedding Day. He Still Made It Incredible.

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October 4, 2002. My birthday.

After eight years of dating, my boyfriend, Jason, asked me to marry him.

My whole family was ecstatic, especially my parents. My dad wanted to throw us an engagement party right away.

November 7, 2002. Our engagement party.

We were surrounded by family and friends. It was a wonderful day. You could see how happy everyone was for us. Again, especially my dad. He made sure everything was just right.

In the days that followed, we made wedding plans. We decided November 1, 2003, would be our wedding day. Jason, my parents and I went to visit a few wedding venues. Our second trip was to a place called the Colonial Inn. When we walked in the “chapel” where the ceremony would take place, my eyes lit up. Much to my surprise, my dad’s did too. He said, “I can see you getting married here.” And with that, our venue was reserved.

One rainy December night, my mom and I decided on a whim to take a trip to the local bridal salon just to look around. I remember the consultant saying, “Very few people just look. Many times they buy a dress right on the spot.” I thought to myself, “Yeah whatever, lady. I am just looking.”

Well, she was right. We walked out with everything that night. We got the dress, veil, tiara… the works. When we got back to my parents’ that evening, I tried on everything for my dad. It was an emotional moment for both of us. He loved the dress.

January 28, 2003.

My mom called me. She said something was wrong with my dad, and she asked if I could please come to their apartment. Things were bad when I arrived. He was talking but wasn’t making sense. He had lost all feeling in his left side. In the days and weeks that followed, we endured a variety of diagnoses and several hospital transfers. In the end my dad was diagnosed with acute disseminated encephalomyelitis (ADEM), an extremely rare autoimmune disease that attacks the myelin sheath, the protective layer of the brain. The disease had already done a lot of damage. He had to endure surgeries, tests and more tests. He spent the bulk of his time in the ICU at the hospital. We sat together every day watching monitors and listening to machines.

March 1, 2003.

I received the phone call that would change my life. My dad had passed away.

Immediately, I wanted to cancel the wedding. It was only eight months away. I remember my mom telling me, “Absolutely not.” She said my dad would have wanted our day to go on as planned.

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My parents, Jason and me at our engagement party. This is the last picture of my dad and me together.

November 1, 2003. Our wedding day.

My dad never got to walk me down the aisle as we planned, but he was a big part of my day in so many other ways. He got to see me in my dress and he helped choose where I would be married. And I believe that he was looking down on me on that day, the day he made possible. For that, I am forever grateful.

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 The Mighty is asking its readers the following: Describe a memory with a loved one that you didn’t realize meant so much to you until they passed away. 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.

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We Got Used to Teachers Closing Their Doors as We Walked By. Then One Opened.

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“How many doors will suddenly close as we go down the hall today?”

“How many stares will we get along the way?”

“What if he stops to squeal, make his loud noises or stomp his feet so forcefully every few steps?”

“Please let us make it out of the building today without any hurtful incidents.”

Our son’s Comprehensive Development Classroom was at the very end of what I was convinced was the longest hallway in any school. Despite my son’s cerebral palsy and autism, we felt it was important for his developing motor skills for my wife to hold onto him and allow him to walk down that hall to and from his classroom every day, with her assistance.

Some days it was absolutely agonizing.

Some days it was arduous.

Some days it was heartbreaking.

In our household, autism seems to introduce itself at the worst possible moments.

While at the drive-in window.

While at a restaurant.

While walking down the hallway from the school’s entrance to my son’s classroom.

My wife would count the number of teachers who suddenly closed their own classroom doors shut as she and my son slowly made the trek down the hallway. She could feel the stares, the glares, and the fear in her own heart every day. Some days, fear would slip into the car and ride along like a passenger on the drive to school, whispering in her ear the entire time.

She wished more people understood. She wished more people would take the time to learn and understand what was happening.

My son was making happy noises. He was expressing his excitement, his joy and his genuine pleasure when he made those sounds. They were the only way he could express himself.

At the end of each day, when he would see his mother open the door to the classroom and call his name, he would squeal with delight. He would gingerly raise his arms, crippled by cerebral palsy, and hug her neck. As she lifted him up into her arms, he would kiss her cheek over and over.

Mother and son with a bond that defied any fear, any pre-dispositions, any attempt by the world to undermine it.

I call it his “happy dance.”

Beth is one of those teachers whose classroom my wife and son walked by with dread for so many years. She heard my son’s loud noises, and felt his yelps echoing off the hallway’s walls. She listened to his feet stomping every few feet.

But instead of closing her classroom door, she opened her classroom door.

This is what she told my wife.

“Once I learned that he was squealing when he heard your voice, it just made my day to hear him. He loves you so much and he is so blessed to be yours and he knows it! I had to open my door just so I could hear it.”

With eyes wide open, and her heart then wide with love, she opened her door to grace and understanding.

As parents of children with special needs, we have been given gifts. Too often we try to hide those gifts. Too often we make excuses or try to explain ourselves. We become defensive or defeated.

My son’s “happy dance” is an example of how that even though our pain runs so deep as special-needs parents, our purpose runs even deeper. His expressions are a gateway to grace and understanding.

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We have a choice. Our circumstances do not define us. We can choose instead to be defined by the way we respond to our circumstances. When we rise above our circumstances with grace, dignity, and pride, our sojourn impacts, inspires, and teaches others around us.

We can choose to hide behind closed doors, closed hearts, and closed minds. Or we can choose to open the doors and proudly display our gift to the world.

Sometimes you may need to unwrap your gift right in the middle of the hallway.

This post originally appeared on Not Alone.

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This 1-Year-Old With Down Syndrome Has a Message for Her Older Brother

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Dear Big Brother (aka “Buh-Buh”),

Screen Shot 2015-04-14 at 5.27.25 PM I know I’ve only been around for a year and half, but I can already tell you’re awesome. You’re like a superhero to me. You can do no wrong. That’s why I look up to you. Another reason I look up to you is because you’re taller than I am, but who isn’t?

Mom told me you wanted a little brother. You got me instead. It’s funny, because you always tell me I’m perfect and that you wouldn’t change a thing. Thanks for that. I suppose it helps that I like cars and trucks.

When I was born, I heard you didn’t even blink when Mom and Dad told you about my extra chromosome. I remember you were sad about the holes in my heart, though. I bet you were also sad about all the attention I was getting. I remember you telling Mom you missed her a lot. I also remember you holding my hand in the NICU. You said you didn’t want to leave me. I didn’t want you to leave, either. I knew then that we’d be best friends forever.

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I heard that after I was born, you couldn’t wait to tell the world about me. In fact, Dad says as soon as you got home from the hospital, you rushed over to the neighbors house and talked their ears off. I bet that hurt. Dad says you told them I had Down syndrome and that I might look different and learn a little differently, but you didn’t care because you loved me. You also told them about the holes in my heart and that a doctor would have to close them up someday. Dad says you were so proud to be a big brother to me. He also says he wishes you would feel the same way about your other sister. Is that because she doesn’t like cars as much as I do?

Screen Shot 2015-04-14 at 5.28.40 PM I hear Mom and Dad talking about your bad behavior all the time. I don’t get it. I find you funny. In fact, I want to be just like you when I grow up. That’s why I copy your every move. I especially like it when you make those loud howling sounds when Mom and Dad are talking. That’s hilarious. It usually ends with you going to your room. I hope someday I’ll get sent to my room!

Do you still want to marry me? You said you did! Mom and Dad say we can’t, but I don’t care. I want to be with you forever. I heard Mom and Dad want to ask some guy named Will to make that happen when the time comes for them to leave. As if that’ll ever happen — Mom never leaves my side! Geesh.

If you can’t tell, you’re my favorite. That’s because you get me. You know my tickle spots, you know my favorite faces and you know how to dry my tears, especially after Mom pokes me with those needles to give me medicine for my blood disorder. While most people would turn away, you don’t. And while most people don’t understand the sounds out of my mouth, you do. Or at least you pretend you do. You’re also the best person to kiss, which, by the way — sorry about all the drool. Mom likes to tell everyone I’m teething, but I’m pretty sure she understands I’m just being me.

I love you, Brother. I love you so much! I thank God for creating you and for creating me, because like Mom says, we’re a match made in heaven.

Love,

Your littlest (and favoritest) sister, Willow

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This post originally appeared on The Mighty Willow.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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When a Stranger Commented on My Parenting Skills and Made Me Cry

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Christmas shopping can be stressful enough. But it was getting down to the wire and I only needed a couple more things, so that day I was Christmas shopping with four of my seven children ages 4, 5, 8 and 10 years old.

Into Barnes & Nobles we went, not to browse, but to beeline it straight to the cookbook section to find a book on Indian cuisine for my stepmom. The older two took the littlest one and went to the children’s department since my 5-year-old son with autism couldn’t go anywhere without an adult.

It was the year of shorts and Bob the Builder boots and screaming. Eventually, I pinned him between my knees, grabbed a couple books that looked good and tried to pick the best one. I noticed a couple of women starting to look our way and I smiled and said, “Some day I’m going to get him a shirt that says ‘I’m Autistic, Not Rude'” and they laughed uncomfortably.

By this point he was done, and as we walked the quarter mile to the front of store, he kicked his Bob the Builder boots high into the air and dropped the ground screaming, “I’m autistic not rude! I’m autistic not rude!” over and over again. My other children walked behind us at a safe, nonchalant distance as I tucked the boots and prized gift under one arm and alternately dragged and carried him to the line in front. He sat on the floor screaming as I nudged him forward in line, talking gently and reassuring him the whole time. We could’ve left, but this was our life and life went on.

As it got closer to the front I realized there was a woman at the end watching us. She was waiting for us. Oh no, not more advice! Or worse yet, was she going to criticize me right there in front of the whole store and my children? By that time, I thought we’d heard it all from everybody with their two cents. We paid, we finished and head held high, my screaming son and I approached her (we had to if we wanted to get to the front door).

And she smiled. And she said she thought I was doing a good job. She said she thought I was patient and kind. She said I was a good mom. And I cried.

And 10 years later, I’ve never forgotten her.

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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why My Son Eats 3 Bowls of Oatmeal Before Breakfast Every Morning

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My 7-year-old son starts his day with at least three bowls of hearty, nutritious oatmeal before his portioned school breakfast and recommended lunch. The rest of his meals on a typical day are: two after-school snacks, more oatmeal, Special K cereal and yogurt and then dinner with the family.

One of my son’s favorite meals are Southern fried chicken, macaroni and cheese, cornbread and broccoli. He’s only allowed that dinner once a month; the rest of the time, he has baked or grilled chicken. Other favorites are salmon, turkey spaghetti, my mother’s meatloaf, tilapia and of course, McDonald’s happy meals.

People are always surprised at the amount of food he can consume. At times, he eats more than his father, and at least the equivalent of his brothers — both in their twenties. At first glance he would appear greedy, especially if you also consider the speed at which he eats, usually rushing as if he’s about to lose his turn on the Wii. What 7-year-old devours this amount of food?

The best answer we’ve come up with is that it’s a side effect of the medication he takes for his triple diagnosis: autism, oppositional defiant disorder (ODD) and attention deficit disorder (ADHD). What his doctor later told me was a trifecta diagnosis. At 2 years, 9 months old, when he was first diagnosed with autism, I remember refusing all medication. I thought he was too young and that pills were too much. For one, I was afraid of the side effects and wondered what would be needed in the future if medication was the best option at that time. He was a baby, a toddler at best. A writer friend of mine said, “If he had diabetes, would you deny him insulin?”

Her simple question resonated with me. She had a son who suffered from mental illness. She’d advocated for him all his life so I trusted her opinion. While I wasn’t certain what category my son’s diagnosis fell under, I was assured by his developmental pediatrician that the medication were necessary and would help. I eventually agreed to the  prescription but hoped the ABA therapy would ultimately be what allowed him to be rid of the drugs. Every child reacts differently to medication and  lab work became routine. My son never gained weight, a very common concern and side effect of some of the medication, nor was he underweight. He was always right where he should be — a healthy, average kid.

As a child, I was thin, lean with long legs. I enjoyed a fast-burning metabolism and could eat just about anything. Now, I didn’t eat at the rate of my son, or 8-year-old daughter for that matter, nor did I take medication. I did, however, eat more than my parents, and was constantly asked where did I put my food. Perhaps, my son is just eating what his body requires and the medication kicks it up a notch.

The problematic component to this is that to most people who can’t take the time to know him see him as greedy, picky and demanding. It is not fathomable to the average adult that a child can consume this much food. They often have to witness it to believe it, and see that he really is hungry. And, on more than one occasion, to verify that we have not starved him for effect.

This is how oatmeal became the breakfast of choice. It usually fills you up and it is cost-effective. Yet, even with a low-cost start to the day, the money adds up in feeding the equivalent of a teenaged football player with a picky diet. My son would much prefer to have several bowls of Special K, his favorite cereal for the time being, with just enough milk to cover but not too much to make it where the cereal doesn’t crunch as he hums while he eats each bowl.

When there’s more time, like on weekends, he requests pancakes with bacon and eggs after at least two bowls of cereal or on rare occasions when we will have french toast. For the most part, he likes to eat the same thing every day until he decides he doesn’t like that thing anymore and moves onto the next item of choice. I try to get him to eat fresh fruit but that’s a real struggle. He will eat strawberries and grapes, but counts out how many he will bite and swallow. Sometimes we compromise on fruit in his yogurt. Luckily, with some coaching and modeling, my son’s food choices have become healthier. The two of us have come a long way with food.

I’m no expert on autism, oppositional defiant disorder or attention deficit disorder, but I am an expert on my son — he’s hungry. But this also doesn’t discount his from being a typical 7-year-old boy who on some days will be greedy simply because he wants something extra, his eyes are bigger than his stomach or just because, well, he’s a kid.

I work with him on quiet bites at the table knowing that everyone won’t appreciate his musical renderings of “Everything Is Awesome,” “Wanted Dead or Alive” and “There Goes My Baby.” And I remind him about proper etiquette while eating, except his lessons aren’t over at a specified age, as they were with my other children; these lessons can happen daily when your child processes information in an alternate way.

Parents know about patience. What I’m saying is not new. But when your child faces additional challenges, you are also prompted on the resilience inside of you. So the next time you see or hear of a child eating more than what you think is his/her fair share of a meal, don’t assume greed. Consider the possibility that they might just be hungry.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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