What Dancing Has to Do With Having a Sibling With Special Needs

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Many people have asked me and still ask me, “How was it growing up with a sister with special needs?” They ask questions like: “Do you feel like your parents didn’t spend a lot of time with you while you were growing up?” “Did you feel like you always had to be perfect for your parents because of all the hard things that they were going through?”

The answer is: yes and no. Let me explain.

When I was 2 years old, my sister was born. When she turned 2, her symptoms of special needs started to show. Our lives changed completely after that. You can never plan for these things to happen and when they do, you don’t know what to expect. My sister has developmental delay and slight autism. The best way I can describe her is as a 2-year-old in a 17-year-old’s body. Physically, she has no problem walking or running, but she doesn’t talk and she has no sense of danger, so she always needs one-on-one care. While I was growing up, I think that yes, most of my parents’ time was spent on my sister and her care, but I never felt that it took away from my time with them.

I would like to give advice to my fellow sibs out there and explain how having a sibling with special needs changes your life.

It’s not going to be a smooth ride; there are going to be many difficult times. You are going to go through things that most children or teens your age will never have to go through, but not for one second should you let negative thoughts take over. All these things that you will go through only make you a better, stronger and mature person.

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Many questions will run through your head while you are going through all these hard times, questions like: Why can’t I act like a normal teen? Why can’t I have loads of friends come by to play? Why can’t I have a conversation with my sister or brother? I want to tell you that it’s okay to question and it’s okay to feel upset, but the worst thing to do is to keep it all inside.

My biggest mistake when I was going through hard times was that I never shared my feelings with anyone. Everyone has ups and downs, and yes, not everyone is going through the same things, but if you look for answers and you don’t ask the questions first, they will stay unanswered. It doesn’t matter who you speak to — parents, friends, even if it’s one person with whom you feel the closest — it’s always best to share instead of carrying on with everything still inside.

When I feel down or I’m going through a hard time, the place that I go is my sister’s special school. You know why? Because all the girls and boys bring love and happiness to everyone around them.

Many ask if I ever wish that my sister was “normal” and if we could live a “normal” life. My answer is no. Looking back, I realized that it’s the best thing that has happened to me and it is the reason I am who I am today.

So keep your head up high and be proud that you have been blessed with such a special sibling, even with all the hard times along the way. I remember every day that despite the fact that that my sister will never live an independent life, she will also never crash the family car or fight with her siblings. She will never flunk out of school. She will never get married or divorced. She will never understand the evils of this world or understand death. She is pure happiness and I will always be grateful for having her in my life.

“Life is not about waiting for the storm to pass. It is about learning to dance in the rain.” We have not been given easy lives, but they are lives worth living. Cherish the challenges and later you will realize that it’s the challenges that have made you the person you are today.

Keep you head up and don’t forget to dance in the rain.

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When a Nursing Assistant Asked Me What the Real ‘Red Band Society’ Is Like

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Today, while chatting about odds and ends and the ridiculousness that is Hollywood’s recent obsession with sick and/or terminal teens, a nursing assistant asked me a question that left me stumbling over my words. And in my drugged, delirious and exhausted state I just could not find it in my vocabulary to answer.

“What is the real ‘Red Band Society?'”

(For those of you who don’t dabble in the far-too-many poorly created scripts that have managed to make it onto television or the silver screen, you can find an explanation of the show “Red Band Society” here. Just don’t blame me for side effects: incessant eye-rolling, gagging and what-the-heck moments.)

I’ve been thinking about that question all day and decided (though still delirious, so forgive me!) to attempt to craft an answer that adequately explains my feelings on the matter. First thing. Being in the hospital is not all about freedom, fun, friends and pizza parties (which sounds to me a lot more like the description to a sixth-grade birthday celebration). It’s not where “life starts,” as the show’s previews proclaim. It’s not all clichés and sentimental, sensationalized stories of bald kids and bravery. And it’s certainly not all feel-good happy endings to cater to that warm, fuzzy place in your heart so you can rest your head easily on your pillow at night knowing all is good and right in the world.

What is it?

It’s more like crying so hard you puke and puking so hard you cry. It’s where the life you’ve always imagined for yourself stops, reality slaps you in the face, and you have no choice but to confront it face-first — whether you’re ready for it or not. One thing is for certain: You will not be ready for it. It’s those moments of loss and pain and sadness so deep and scary you never knew such depths existed or that they could ever exist within your soul. And no words or inspirational quote slapped on a pretty placard could ever come close to explaining it or fixing it. On good days, maybe your eyes and mind will focus on the kind notes from thoughtful friends and family and maybe even strangers. Their cards will help cover your walls. But on most days those walls will feel strikingly white and bare. Harsh, fluorescent overhead lights will replace sunshine, and the air will be so dry and sterile that no amount of ChapStick will keep your nose and gums from bleeding.

Oh and if you’re lucky? Maybe, just maybe, you’ll eventually get to walk through those exit doors. But your soul will forever hold a gaping wound, and all you can do is hold onto the hope that you’ll have equally as many days of joy, laughter and sunshine in your life to fill that hole back up again.

The real Red Band Society has no exclusions or mercy rule. At any moment it could be your life. So make sure you take some time to breathe and send your gratitude out to the universe for that club you’ve been spared from for yet another day.

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Why I’m Forgiving My Daughter’s Attacker

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I spend so much of my time being angry. Not at a person, but at neutropenia. Chronic benign neutropenia, to be exact.

Doctors define it so simply. Neutropenia is when your body doesn’t produce enough neutrophils. Neutrophils are a type of white blood cell needed to fight infection.

For my 19-month-old-daughter, Willow, neutropenia means much more. It means pain. The poke of a needle twice a week. The sting of watching mommy, her protector, administer each shot. The torment of bone pain as the drugs work their magic producing neutrophils deep within her marrow. The misery of mouth ulcers, the agony of a fever or the discomfort of a skin infection when the drugs just aren’t enough.

I guess you could say neutropenia also causes me pain. It’s torture watching my littlest daughter fight such a big battle. It’s not fair. It’s just not fair.

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While antibiotics and neutrophil-boosting drugs like Neupogen help Willow fight physical infections, I’m left wondering how to treat the poison coursing through my own body — anger. It eats at me just like the bacteria eats at Willow and causes her sores.

I hate neutropenia for making me question every little blemish on my daughter’s body.

I hate neutropenia for robbing my daughter of a chance to play freely with friends for fear of germs.

I hate neutropenia for forcing me into the role of the crazy lady who carries a bottle of hand wash in her hands at all times.

I hate neutropenia for making me take on the task of administering shots of Neupogen.

I hate neutropenia for ruining too many nights of sleep.

I hate neutropenia for causing me to question every… little… thing.

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My daughter also has Down syndrome, and while I’m told the two are unrelated, Willow’s extra chromosome does play a role in how seriously her neutropenia is taken. A small pimple landed her in the hospital a few weeks ago because it got infected and gave her a fever. I foolishly thought I could help the situation with some antibacterial ointment. Her hematologist set me straight. According to him, a tiny infection can turn deadly if it enters her blood stream. That’s because when she was just a month old, Willow had some heart defects repaired. Those repair sites are supposedly magnets for infection. Gulp. Yet another reason to hate neutropenia. Dang you!

But, I’m done! I’m tired of living this way. Exhausted. And I’ve come to realize if I’m going to help my daughter through this, I need to be at maximum strength. I can’t stop neutropenia from attacking my daughter, but I can stop it from tormenting me.

Today I am taking the first step toward letting go of my anger. I’m forgiving my daughter’s attacker.

Neutropenia, you’re evil. Plain and simple. So why should I waste my time hating you? You’re not going to change. No. Instead, I’m going to accept you for what you are — an inconvenience.  Something to be conquered. And believe me, you will be conquered! For months, you’ve held my family captive. Now it’s time for us to put you where you belong — behind bars.

From this day forward, I won’t allow you to invade my constant thoughts. I won’t allow you to ruin my day. Neutropenia, I’m done being angry. I’m taking back my life in hopes of bettering my daughter’s. Sure, you may try to hurt her, but I guarantee you won’t take her life. She’ll be too busy living it. Loving it.

Goodbye, neutropenia. I’m over you. And, by the way, the key to your cell? I’m giving it to God, because I know He’ll never give it back to me.

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Why waste time hating neutropenia when you can love this?

This post originally appeared on The Mighty Willow.

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Please Don’t Hold Back in Sharing the Joys of Motherhood With Me

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There we all are, having lunch together. Although it had been well over a year since my daughter was born, it had been a while since I’d gotten together with this group of girlfriends. One is expecting her first child, two others had their first babies and another one had her second, like me. We’re all busy women.

The majority of these friends are social workers; there’s a lot of compassion, nurturing, care-taking and kindness. They’re all wonderful people. So as one new mom says to the other, “Isn’t it amazing when they first smile at you?” there was a pause, a feeling, some glances. One even said, “but Julia…” and looked at me. I just nodded and said it’s OK.

See, my daughter can’t smile. She can only open and close her mouth. She has facial paresis, one of the symptoms due to being born with Moebius syndrome.

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At that moment, I didn’t feel envious or have that heavy feeling in the pit of my stomach I’d felt before when we were first given the diagnosis and would see other babies smiling. I was happy for my friends. Becoming a mother is a joyous time. I’ve another child without any special needs. I know that feeling — when your baby smiles at you. It’s an indescribable emotion. I grieve the loss of that for my daughter all the time. We’re working with lots of therapists and doctors to get her the most out of what movement she has. But there are many things she does do that give me that same feeling: putting her arms around me, the excitement in her eyes, her open mouth kisses, her guttural laugh, the way she shakes her booty when she’s excited. I feel the same way! I’ve wanted to be a mom since I was 6 years old. The joys and unconditional love is something I’m so grateful to experience.  I also believe that a part of enjoying motherhood is to have good girlfriends to share it with. I love my children and I love my friends and their children.

So, although I appreciate the awareness that something may hurt my feelings, I don’t want my friends to hold back in sharing their experiences of motherhood. I love being a part of it, hearing their stories and sharing my children’s stories too.

I’ve reflected on this day a lot because I was surprised how talking about another child’s smile didn’t make me feel sad. We’ve overcome a lot and adapted to our daughter’s differences. I feel like I’ve finally come to a place of acceptance and can see the joys of her life and can celebrate those of others around us. It was this lunch date that helped me realize that.

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When People Think Things Are ‘Just Fine’ Because My Kid’s Out Of the Hospital

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I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month. This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far. Someone responded, “Money is nothing, be happy she’s alive.”

I have to give the original poster credit. She nicely replied that she is, of course, happy her daughter is alive, but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us. The response back was something like, “I was just trying to point out the positive. :)” Maybe it was the (seemingly) passive aggressive use of the smiley face, but that comment made my blood boil.

I do want to address the interpretation of that exchange, because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it.” Once the baby is out of the hospital, and everything is “just fine,” the family and the world is supposed to move on and be “normal” again.

This vent/response is for the moms and dads who are hurt every time someone makes them feel that way:

No, I’m not over “it” and here’s why: “IT” is not over! My days revolve around “it.” Between tube feedings and oral feedings, I work with my son on feeding for four to five hours a day. When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.

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Every cold and every sniffle sends me into anxiety. I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital. And by hospital, I often mean the Pediatric Intensive Care Unit.

19 months later and I still worry if he is going to be able to breathe on his own when he’s sick. 19 months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.

Yes, he is alive and I am so thankful for that. However, I’m not sure which parts of “medically fragile” and “failure to thrive” fall into the “just fine” category. The fact is, my son, Owen, is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine.”

And then there is the most hated word of all. “Normal.” I’m not 100 percent sure what “normal” means, but I do know Owen’s course isn’t it. He’s not had a typical course and so far, his outcomes are not that of a typical child his age. He is different and it’s my job to prepare him to navigate these differences.

So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore. Let me just put it out there really, really simply. I will NEVER be the same person I was before Owen was born. 95 percent of the ways that I have changed are for the better. I’m a more balanced, empathetic, appreciative and kind person.

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The other 5 percent are the memories of fear, helplessness and devastation of spending 181 days in a place where babies — very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby — die.

You see, in my old, “normal” world, babies didn’t die. In my new world, I think about those who were lost every day. I’m no longer naive to the true pain that is in the world. I’ve felt it and the scars still ache. I’m prepared for them to always ache.

So yes, I have changed and I am moving forward from where I was, but I will not forget. I won’t forget for myself, or my family, because with the pain, came so many wonderful things. I also won’t forget because there are new families going through it today and more families will go through it tomorrow.

When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward. Prematurity awareness is about reality. It’s the reality for 12 percent of births. Sharing knowledge is not being negative. It’s about wanting to do something — anything — to help others never have to feel it.

Ahh, that felt good to get off my chest. What do you have to get off your chest today?

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This post originally appeared on Ain’t No Roller Coaster.

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Secret Candy, Escape Plans and More Ways to Bond in the Hospital

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I had been there a while. A week, maybe two weeks… who knows? It’s hard to keep track of time when you’re confined to the pale, dreary walls of a hospital room.

I had seen patients come and go. With each of them I had to bite my tongue to stop myself from blurting out, “EXCUSE ME! EXCUSE ME! Maybe you’re unaware, but I was here FIRST! It’s MYYYYY turn to leave! Get in line!” As it turns out, that’s not the way things work in the hospital. But I was all too aware of that by this point. I was, of course, a frequent-flyer, spending just as much time inpatient as out.

As each new patient was rolled in on a stretcher, I usually expected to have an elderly person as my new roommate. After all, I was in a hospital, and hospitals are supposedly for old, sickly people — not young girls in their twenties who just a few years ago were working hard on their college and graduate education.

But one time, to my surprise, there was a roommate who was not so different from me. Young? Check. Talkative and interactive? Check. Seemingly had a sense of humor? Double check. For those of you reading this who aren’t professional patients, I’ll let you know that this is pretty much as good as it gets in the roommate lottery.

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We spent the next week or so getting to know each other and each other’s families. We laughed together. We dreaded when one particular nurse came on shift together. We were “shushed” by nurses for our antics late at night, violating the ever so strict “quiet hours” rules. My amazingly awesome roommate’s husband would also bring in contraband on a regular basis. No, not drugs, nor alcohol (though at times, that would’ve been the most helpful). But food from the outside. For me, who was unable to intake solid food (and on occasion had a big NPO, “nothing by mouth,” sign hanging over my bed), this was a giant, Costco-sized bag of Dum Dum lollipops, which I will never look at the same way.

We also cried together. We supported each other through hard-to-handle diagnoses. We hugged and reassured each other. We offered to switch places with each other if we could during those rough times. We drew blue prints and made escape plans for how we were going to discretely escape from what was affectionately known as Hotel Hell. But then we would get ourselves together, and make a pact: if one of us kept going, the other would, too.

And more than three years later, we are still close friends. And I would still consider that miserable hospital stay as one of the best, simply because of the friendship that came out of it.

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