Why It’s OK My Daughter Received No Awards at Her 8th Grade Graduation

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It’s the 8th grade graduation at Higgins Middle School in Peabody, Massachusetts. In the midst of announcements recognizing junior honor society members, scholarship recipients, superlative winners and top students in records of attendance and community service, please let me introduce you to an academically average and otherwise ordinary student: my daughter, Mandy. Her name won’t be announced for any awards today. She sits among a large sea of faces in the letter “M” section of the incoming freshman high school class of 2019. 

To many, the most outstanding thing about Mandy is that she’s “the kid with the cane” the only student out of 450 in the 8th grade graduating class who uses a long white cane for safe independent travel.

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Mandy at her 8th grade graduation, smiling and wearing a colorful dress.

Mandy isn’t on the president’s list.

She isn’t a member of the student council.

She doesn’t volunteer as a peer mentor or tutor.

She isn’t in the band or on a sports team. 

She doesn’t even have perfect attendance with four eye disease specialists, appointments inevitably get scheduled during school hours. 

Mandy’s artwork doesn’t hang from the school corridor walls, though her boundless imagination colors everything she touches.

She doesn’t formally cheer at athletic events, but she’s the most lively cheerleader of American history her 8th grade social studies teacher has ever seen.

Mandy isn’t on record as one who “volunteered the most hours at the local food pantry.” Her community service includes encouraging a new shy classmate and consoling a much younger bus mate who was temporarily trapped in a damaged seatbelt.

Her exemplary performance comes not in straight A’s, but in achieving just one semester of honor roll while juggling lessons in Braille, assistive technology and orientation and mobility.

Her superb memory doesn’t produce perfect test scores, but instead inspires choosing a year-end gift for a favorite teacher based on an offhand remark made several months earlier, at the start of the school year.

She’s a member of the honor society for perseverance.

She earns a 4.0 in enthusiasm.

Her superlative is most inquisitive.

Her biggest achievement is adaptability.

She’s a recipient of scholarships for courage and kindness. 

Mandy’s strength comes out of her weakness and her assets are a direct result of her limitations. My daughter is daily learning to make advantage out of disadvantage.

 It’s a beautiful adventure to witness this miracle in mediocrity.

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Mandy smiling in between her parents.
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The Side of Infertility That’s Still Very Much Taboo

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Infertility isn’t glamorous. It isn’t always inspirational quotes and images of the ocean on tumblr. It isn’t always holding hands in waiting rooms and wishing the people you’ve met along the way, “Good luck.”

There’s a side of infertility that’s becoming more widely acknowledged in our society, but is still very much taboo. It’s the anger. The sadness. The grief. Nobody talks about these things because we’re supposed to remain positive. And while a positive attitude is important, we’re all only human. One of the hardest things I’ve had to do is find a balance between remaining positive and being human.

The day my wife told me we’re going to be aunts again is a day I’ll never forget. I cried the type of gut-wrenching sobs I’ve only cried two times before in my life: When my mother was diagnosed with late-stage cancer, and when my brother died. I spent the entire day on the couch eating peanut butter out of the jar while watching “Roseanne” reruns. I remember something Aunt Jackie said to Darlene in one particular episode: “Life is unfair. Life is this big unfair thing.”

Life sure is this big unfair thing, and there’s nothing anybody can do about it. Here we are, months out of our news with thousands of dollars less in the bank, and no baby. Procedure after procedure followed by surgery, and no baby. While it seems like the rest of the world tries once, twice, or not at all, we have to remain positive.

I cried so hard and so long that day because I hadn’t let myself cry before. I would shed a few tears here and there, and then go about my day. I never actually took the time to sit with myself and my feelings. I believed that if I let myself feel them, I was admitting that this would never work. I also let people make me believe that my feelings are somehow unimportant. After all, all I have is a combination of fertility problems. I don’t have a terminal illness… However, the truth is I have every right to feel my feelings, as unpleasant as they are sometimes. I’m grieving something that never existed while trying to balance my feelings towards everyone else’s happiness.

Because infertility often gets swept under the rug, those who experience it are left feeling alone. And feeling alone when you already feel like you have the weight of the world on your shoulders isn’t a good combination.

My advice to anyone currently walking this journey is simply be kind to yourself. In addition to giving myself permission to feel, I’ve learned to give myself more “me” time and not feel guilty for treating myself every now and then. If I don’t take care of myself, I can’t take care of anything else. If I can’t take care of anything at all, how will I ever find the light at the end of this tunnel?

Though some days I can see it more than others, I know that there is a way out. There is a bright light at the end of this journey, even if it isn’t what I’ve envisioned.

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Johnny Depp Dons Jack Sparrow Costume to Visit Kids in the Hospital

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Johnny Depp might be pretty busy filming the latest “Pirates of the Caribbean” movie in Australia, but he took some time to surprise kids at the Lady Cilento Children’s Hospital in his full Jack Sparrow costume, Nine News Brisbane reported.

Depp took photos and chatted with kids in the Brisbane hospital. One 7-year-old named Max Bennett, who was on life support just weeks ago, even received gold coins from the celeb, according to ABC News. You can watch the exchange in the video below:

The 52-year-old movie star often visits hospitals in costume, according to Nine News Brisbane.

Check out more photos from his heartwarming visit below:

 

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A Guide for Parents Who Are New to the NICU

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Dear New NICU Parents,

Welcome! Congratulations on your amazing gift.

I know you’d much rather be in your own room snuggling your baby on your chest, but alas, life has brought you here. Please know you’re not alone on this journey.

This is your Day 1. Breathe.

You’ll undergo orientation for everything that’s happening where and how to wash your hands, what you can or cannot eat or drink (Nothing, unless you’re nursing. Then water), who your doctors are (Yes plural), what team you’re on and who your discharge nurse is. You’ll learn the term “assessment” and watch bright lines and waves on black monitors. Don’t worry they’ll make sense soon. You’ll learn about the bed your baby is in. You’ll figure out what medicines he or she is on. You’ll get frustrated, and that’s OK. When you go to find a soda to get some sugar in you because you haven’t eaten in two days, you’ll realize there isn’t one ounce of real sugar in this place. You’ll get nervous when you realize only two people are allowed by your baby’s bedside, because you need support from your family, friends or both. You might not think so, but you’ll get through it. You might be terrified, but you’ve got this. You’ve got more courage than you know.

By Day 5, you’ll figure what time doctors actually make their rounds, not the assumed or expected time. You’ll figure out you must first listen to their round and then ask questions when they’re done. You’ll start to pick up on how to help with baths, stretches and, hopefully, dressing and diapering. You might still be recovering. Give your body grace to heal.

On Day 15, although I secretly hope you’re already home, you’ll start to pick up on which primary nurses love your little one like their own. You’ll start to strategically steal the good rocking chairs. You’ll know by now how to take temperatures. You’ll know which sound is an alarm and which alarm is a feeding. With all that walking through the hospital, you’ll wear sneakers more and flip flops less. You’ll figure out, although the cafeteria has a few junk food items, the real food (i.e. M&M’s) are in the vending machine on Floor 3. Or ask another NICU Mama she usually has at least half a chocolate bar in her bag.

photo credit: Baker Baker Photo
photo credit: Baker Baker Photo

It’s Day 29 and you’ve mastered the five-minute I-don’t-really-care shower. You’ll notice pajamas are just as acceptable as the outfit you’ve been wearing three days in a row. By now, you’ll have mellowed out a bit. You’ll know when it’s OK to trust the amazing nurses and get out. I highly suggest when this time comes to choose a nap over anything else. You’ll feel guilty at first leaving your little one, but will realize you need to take care of yourself as well.

Day 52 and you’re on autopilot. Just warning you. It’s OK to coast for a while. This can be a long haul, but you can do it. You’ll be oddly thankful for those rushes of adrenaline when they come. You’ll start calling some of your doctors by their first names. They might even cry with you when answering hard questions. It’s because they love your kiddo. It’s not just their job, it’s their passion. And if it’s not, find a new doctor. Feel free to talk to patient advocacy. That’s your choice.

At this point you’ve seen many babies come and go after only a few days. Outwardly, you’ll be happy for them. Inwardly, it’s OK to grieve. It’s OK you’re longing for that day. 

By now I hope with all my heart you’re already home.

Day 64: You’ll be drained. But that’s expected. You’ll be frustrated. It’s OK to be. You’ll be more comfortable changing a diaper with wires than without. You’ll soon get to bring in new clothes. The simple task of washing them will make you feel like a mommy. You’ve figured out there’s no sugary drinks anywhere within a 10-mile radius of the hospital. You know the nearest coffee shop and exactly which restaurants deliver after 11 p.m. You’ll start forgetting what level you parked your car. Sadly, you’ll probably see a baby pass away. Your heart will be torn out of your chest. You’ll panic. You’ll cry. It’s OK. Let the emotions roll. You’ll start thinking what if, but don’t let yourself go there. Focus on the good. Weep with those who weep and have joy for those who have joy.

You’ll start to realize, as odd as it sounds, there really are good days in the NICU. You’ll celebrate your little one’s every milestone. Tears of joy are accepted here. Tell other mamas — we want to celebrate with you! You’ll learn that word spreads fast in this tight-knit family.

Be prepared for your life to change forever, and to witness love and life like you’ve never known before.

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What You Can Tell From the Contents of Our Hospital Bag

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It’s been said you can tell a lot about a person from the contents of their bag. I wonder what people would think of ours.

It may seem strange I’m writing about a bag. After all, it’s nothing more than pieces of material that carry things from point A to B. But when people pass on the street with their bags, I often wonder what stories their contents would tell. One of many lands travelled? A busy corporate life? Perhaps a busy mother with what I call the “Mary Poppins bag,” the kind that can squeeze in practically anything, bursting with mother’s love and the odd snotty tissue.

I wonder what people must think of the shabby bag never far from my side. I suppose the section of frayed material hidden underneath could be perceived as a worn-out, well-loved bag. Worn-out, sure. But well loved? I think not.

You might notice the faded patches and assume this well-travelled bag has been on many a sunny holiday adventure. The truth is, I don’t know if it’s ever been out in the sun.

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The scuff marks scattered over the worn material are from the many times it was thrown to the floor in the doorway the doorway in the emergency department while I’m screaming for help, trying not to drop my child as she thrashes in my arms mid-seizure.

This same bag has been thrown down at the foot of the bed in the neurology ward almost weekly for the past six years.

It was carried at 3 a.m. by a nurse while this heartbroken Momma insisted on carrying my child, helping myself to equipment, placing oxygen over Bella’s face. If something worse happens to Bella, if she doesn’t make it, I want my face, her Momma’s face, to be the last one she sees.

I have a love-hate relationship with this tattered looking bag. It has held a lot for our family over the years.

This is the hospital bag that came home with our precious newborn. I remember after unpacking it finding a little surprise that made me smile her tiny hospital ID bracelets. If I find them in the bag these days, my stomach twists in knots. It’s now a reminder of the latest emergency.

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The contents of the bag are not filled with toys, as Bella cannot yet play. Instead, it’s filled with diapers and medical supplies. It’s been with us every step of the way on this unexpected journey, one I fear is far from over. It’s quite literally comprised of blood, sweat, tears, some dribble and quite possibly some snot.

This is the bag I threw out of frustration when my child was seriously ill and nobody would listen. It’s the same bag I cradled months later when my girl was rushed into surgery. The bag I held on tightly, waiting anxiously for hours, desperate to hear some news. Any news at all. This bag is the makeshift pillow where I rest my head and spill my tears the many times we were stuck in the emergency room. This silly thing has now become an essential part of our journey.

Much like the loose stitching on this bag, many times our family has almost fallen apart. At times we’ve been forced to carry more than we’re built to handle. Little pieces of us have been torn away, lost here and there, throughout each hospital visit.

We all, including our bag, have our place in these well versed and all too regular emergencies.

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5 Simple but Important Ways to Help Include Kids With Autism

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It’s no secret that children with autism are often excluded and feel isolated from their peers. But sometimes, a little effort can go a long way toward helping them realize they’re wanted and included.

We wanted to know some of the best ways to connect with children with autism, so we turned to their parents. We asked our readers on Facebook to share one thing others can do to help their child with autism feel more included. Here’s what we learned.

1. Take the time to learn about autism.

“People can help my son feel more included by gaining a basic knowledge about autism and by teaching their children a little bit about autism and disabilities,” Lexie Nooyen wrote on Facebook. “I often hear, ‘What’s wrong with him?’ or ‘Is he always like this?’ He can hear you! A little bit of knowledge, acceptance and perseverance can go a long way.”

And if you know someone who has autism but aren’t sure how to interact, it’s OK to ask questions. “My son types to communicate. It’s different,” Amy Allnutt wrote in her post, “The Simple Word That Can Make My Nonverbal Son’s Day. “It’s OK to ask him questions about it. It’s not OK to stare and point.”

Ask me how you can help your children to connect with mine,” Rachael Slough added on Facebook. “I have found that children my son’s age are eager to connect with him; they’re just unsure of how.”

2. Treat kids with autism the way you would treat any other kid.

“It’s simple. Actually ‘include’ them in anything with children their age,” Nicole Newhouse wrote on Facebook. “This will help in so many ways: socialization, awareness, education for all involved and more.”

Andrea Michael, an adult on the spectrum, added that attitude and tone of voice also matter when you’re talking with someone with autism. “Don’t use a patronizing tone… As soon as people find out I have a disability, the falsely over-positive ‘You can do it!’ thing starts to happen,” she wrote on Facebook. “It feels insulting and alienating.”

3. But accept what makes them different, too.

“If my son stims or flaps or hums or tics, just act like you don’t notice,” Lauren Cockrell wrote on Facebook. “Oftentimes he doesn’t even know he’s doing it, and calling attention or asking him to stop embarrasses him and makes him less likely to interact.”

4. If you’re hosting a get-together and are on the fence about whether to invite the family of a child with autism, invite them.

“Invite my child (with autism) to your home. Invite her to go places with you. Let her experience sleepovers and casual visits. Make the effort to include her in your social world,” Regina Hall Williams wrote on Facebook. “My 15-year-old loves being included as a peer, yet it rarely happens.”

“We can usually make the necessary accommodations and prepare our children for an outing if we’re given some time to plan,” Slough wrote. “Don’t hesitate to ask us to do something because you assume it’s not possible. It’s better to ask and for us to decline than to not ask at all.”

5. If conversation is hard, look for other ways to relate.

There are plenty of ways to engage with a child with autism, even if he or she is nonverbal or doesn’t want to talk. Beth Klingbiel suggests making comments that don’t necessarily require a reply. “Instead of asking, ‘Oh, what do you have there?’ comment by saying, ‘I really like your robot. He looks like he’d be fun to play with,’” she wrote on Facebook. “Questions can be hard, and it’s not nearly as awkward if there’s a silence after a comment. There is no pressure to answer, and the child still feels included.”

Let them share their interests in their own way,” Aimee Kelly added. “My son loves Disney and enjoys sharing his many books with his daycare classmates.”

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