To the Special Needs Parents Who Don’t Always See the Glass as Half Full

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Approaching the entrance of the concert hall to attend Vivaldi’s “Four Seasons,” I see a family ahead of me. A boy is walking between his parents. I notice the boy’s blond hair and height. The top of his head reaches to about mid-arm of his mother. He looks to be about 10 years old.

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Then it strikes me. That’s my son Samuel’s age. In that moment, I realize I’m living an alternative reality. My son isn’t tall. He only stands 25 inches. He isn’t walking alongside me to enjoy this performance. He’s at home with a qualified trach-trained nurse watching over him.

It’s too much of an unknown to bring him into a venue with 2,000 other music enthusiasts. I couldn’t imagine Samuel getting upset and needing to be taken out of the concert hall. Or worse yet, what if he needs medical intervention or even something as simple as suctioning? So to avoid all these unknowns and potential opportunities for things to go awry, we have a wonderful nurse caring for our son.

The performance begins and soon the soothing music washes over me as I close my eyes to hear each note. The boy I saw earlier is but a memory. That is, until much later. For days afterward, the image of the boy walking between his parents keeps popping into my head. It reminds me of what I don’t have.

Soon after Samuel was born, I remember seeing a friend’s baby at the mall. All snug in his stroller, I stared at him for a full minute. I didn’t notice his hair, his face or his cute clothes. I was simply awed at how well he breathed. That was a sign, early on, I was living an alternative reality.

Those who know me will agree that I rarely, if ever, contemplate this reality. I choose to see our glass as half full. I reflect on the miracle of my son’s life from a dire diagnosis. I bask in the joy of his smile and his laughter. I believe his life is a gift from God for which I am extremely grateful. I believe he’s a living testimony showing nothing is impossible with God.

But things tend to sneak in unawares. Like the day I realized I won’t be a grandmother. I quickly brushed the thought aside. What does it help me to see what I don’t have when what I do have is staring at me asking me to kiss his hand? So I choose to live in the moment. To cherish the time I have with the son God has given me. If I miss this precious truth, I will only see the glass half empty, and completely miss that it’s also half full.

What do I wish someone told me when I first started this journey, back in the days of the NICU, to help me see my glass as “half full”? I imagine a kindred spirit, a woman sitting me down to say:

There will be many days you find yourself focusing on the negative effects of your child’s medical diagnosis. Instead, be thankful for the good also, even if it’s the fact that your child is breathing or gives you the sweetest smile.

The hectic pace of life will threaten to take away your joy, the joy of being a mother to a miracle. Be purposeful and protect sweet times with your child. Establish a reading time even if they can’t read or comprehend. Your presence is felt. Snatch snuggles and hugs throughout the day. You’ll both benefit.

Don’t focus only on what your child can’t do. Each child’s milestones are different. Rejoice in your child’s first step, even if it’s when they are 10 years old. Or when they make a choice or say their first word. Your child may never say a word, but his smile speaks volumes. 

Believe the impossible. Doctors, nurses, staff and a whole host of others have opinions on what will happen with your child, but I believe God has the final say. My son came off the ventilator against all odds. Hope for the best even though the circumstances tell you otherwise. Even though it may seem impossible.

If you haven’t had a woman hold your hand to offer tips like these, imagine having a cup of tea with me as you read this. I share my heart and a hug with you. You are not alone. We are all in this together. There is always hope.

Follow this journey on Miracle Mann.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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To the People in Our Special Needs ‘Village’ Who Shine Light Into Our Worlds

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They say it takes a village to raise a child. I think that in some ways, our “villages” are getting smaller as the years pass. Times are changing. There is an ominous feeling that we can’t — or at least probably shouldn’t — trust anyone with our kids except ourselves. We are solely responsible for bringing up our own kids. We almost have no choice but to become “helicopter parents,” hovering over our children, fiercely protecting them and shielding them from the scary outside world.

However, when you’re unexpectedly thrown into raising a child with special needs, you quickly realize that you have no choice but to find and embrace your village, to let go and to trust others to help your family. Suddenly, there will be therapists entering your home and working with your child. There will be appointments with various doctors and specialists. There will be thorough evaluations, spanning hours, where you will watch your child’s every move recorded and scrutinized. There will be advice. Oh goodness, so much well-meaning (but often frustrating) advice.

In the midst of all this confusion and uncertainty, this struggle between holding tightly and letting go, a few kind people will shine their lights into your world. These people are your villagers.

A villager will take the time to truly get to know your child, to gain her trust, get into her world and to meet her where she is at that very moment.

A villager will genuinely laugh at an awkwardly told knock-knock joke or a line of scripting from a TV show, even if it’s the eighth time they’ve heard it that day, because they see the beauty in your child’s attempts to communicate and connect.

A villager will gently encourage growth while still respecting your child’s rights.

A villager will watch, beaming with pride, just as you are, as your child achieves a milestone you may have never thought was possible. 

And… perhaps it wouldn’t have even been possible without the villagers’ help.

Every single day, the villagers are showing up to their jobs, but not just working for a paycheck. They are changing lives — and not just the life of the child they’re helping, but the parents, siblings and other loved ones will be forever changed by their work, too. The villagers may not think often about the significance of what they are doing, but it is huge.

To our villagers: I thank you from the bottom of my heart. My children would not be where they are today without your kindness, your patience, your dedication and your knowledge. There is a big world out there, and our villagers are paving the way for my child to find her place in it.

To the parents of children with special needs: Seek out your villagers… you will know when you find them. Trust them. Learn from them. Gradually begin to let go — and watch your child travel from his village out into the world.

young girl walking down a path

Follow this journey on One Big Aspie Family.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the NICU Parents Who Feel Like Their Worlds Are Caving In

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After a whirlwind emergency C-section, our miracle babies entered the world on May 11, 2013:

Charlee, 1 pound, 1 ounce:

And Lennix, 1 pound, 6 ounces:

They weren’t dealt the best hand, but they never let anything defeat them. To date, they’ve endured a 226-day NICU stay, 30-plus surgeries and countless PICU stays.

Next month, we will celebrate two years of being home as a family of four!

November is Prematurity Awareness Month, and as parents of micro preemies, we are determined to bring attention, knowledge and awareness to something that affects nearly 500,000 infants each year. No one should ever have to endure the pain of not knowing if their child will live through the night.

My hope is through this video, fellow NICU families will see that even when you feel like your world is caving in, never, ever give up hope, because “even miracles take a little time.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, illness or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

Photos taken as screenshots from Alexis’s YouTube video

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Why Do People Call Me ‘Brave’ When I’m Just Living My Life?

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I don’t understand why people call me brave.

I accept it as a compliment, even though it puzzles me.

This is the face I take into the world every day, and I’m OK with that.

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I’m pretty sure they are referring to the fact that I go out into the world with a face that looks like mine, but how is that brave? It’s all I have known, and besides, what’s the alternative? Hiding myself away?

Perhaps they assume I must deal with stares, questions, comments and taunts on a daily basis. I do experience these things periodically but not daily. That certainly would put a damper on getting through each day, but even then, we learn to adjust. I just live my life. How is that brave?

Perhaps they consider me brave because I speak publicly to both kids and adult groups about accepting and embracing differences in both themselves and others. I’m comfortable speaking to groups, and it’s important for me to get my message out. So still I ask, how is that brave?

One of my webinar guests, musician Kit Karlson, was struck with Bell’s palsy the day before he was scheduled to go on an intense three-week tour with his band, Stephen Kellogg and the Sixers. With half of his face suddenly and inexplicably paralyzed, activities like eating, speaking and smiling were adversely affected. He elected to go on the tour anyway.

During the webinar, I called him brave. What’s the difference? Why is he brave and not me?

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It’s not about humility. I’ve lived this way all of my life. I know my appearance doesn’t affect my ability to do almost anything else I want to do, and I’m very grateful for that. I’ve had speech therapy, and while I’m not the tidiest eater, I’ve adapted. I’m used to the stares, questions and reactions of people around me as I move into new situations. In some respects, I take these things for granted. These are my “norm.”

For Kit, however, this was all new. The choice for him to go on tour was easy primarily because he didn’t want to let his band down. His skill on the keyboard was unaffected, even if he did have to give up playing the tuba. As stressful as the tour was, he was at least sheltered by the support of his bandmates, friends and fans.

In retrospect, Kit admitted that doing the tour was the best thing for him. It prevented him from holing up in his house feeling sorry for himself and worrying about how long the Bell’s palsy might last. (Kit’s affliction lasted only two weeks with no after-effects.) Also, once his situation was known, he came to realize quite a few people have had experience with Bell’s palsy, either personally or via someone they know.

Did he endure stares? Yes. Did he have trouble eating? Absolutely. (He kept to himself during meals.) Did he smile on stage? I’m sure he did. And while it wasn’t his usual smile, it still meant the same thing.

Bravery is being afraid and doing it anyway. Kit had a lot of unknowns to be afraid of. Hence, Kit was brave.

Me? I just live my life day to day. When it comes to my face, there isn’t much reason to be afraid.

Follow this journey on Facing Up to It.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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16 Parents Get Honest About Life After the NICU

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Preterm birth affects an estimated one in 10 babies in the United States. That means one in 10 families spend a significant amount of time in the neonatal intensive care unit, or the NICU. We read a lot about people’s experiences in the NICU — but what happens afterwards?

The Mighty teamed up with NICU Helping Hands to ask their Facebook community what is the one thing they want other to know about life after the NICU. Here’s what they had to say.

1. “Your first night home without the 24-hour nursing care is scary, but it will get easier.” —Jamie Headley

24hours

2. “For some of us the worry has just begun.” –Shannon McGrath Nasser

3. “Sometimes you come home empty handed… [and] broken hearted.” —Barb Baker

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4. “‘Steps aren’t a concrete form of measurement. What may take someone five steps to complete might take your child 15. Those micro-steps add up over time.” —Stacey Rhodes Cruttenden

5. “You will find strength in yourself that you never knew you had.” —Lorabeth Margolin Bradford

strength

6. “All your emotions are valid…” —Stacey Harris

emotions

7. “When you’re finally able to bring your child home you realize how incomplete you are without that little life.” —Bobbyjo Sanchez

8. “You never, ever forget the amazing nurses, doctors, even the cleaning crew! They’re special people who will forever hold a place in my heart for taking care of my little boy!” —Amanda Darmos

doctors

9. “You will cry every time you leave the NICU without your baby, and then you’ll cry tears of joy when you finally get to take him home.” —Michelle Hewitt

10. “The NICU will always be with you. I still have dreams of the monitors going off… I wake up and my baby is still asleep in her cradle.” —Marilee-and Adam Curtis

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11. “The NICU is like a home and no matter how much you try to ignore it or avoid it, going back to visit makes the nurses’ day! You will always feel at home when you visit and it will bring back every emotion you ever felt, but knowing you left the NICU with your baby is the most amazing feeling and visiting makes it so much better.” —Stephanie Marie

12. “The fear of having these tiny babies doesn’t go away when you bring them home. You are so used to the nurses, doctors, alarms, monitors. It is very scary taking your baby, or in my case, babies, home with out these. Every day at home you become more comfortable and relaxed, but it takes time.” —Brittany Loren Wittmann

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13. “It will be really hard to sleep. Get help at night. You need to sleep.” —KC Brow

14. “Just because we look calm and put together doesn’t mean we’re not silently falling apart inside. PTSD is a very real thing a lot of us preemie parents deal with every day, and you do not just simply ‘get over it.'” —Viola Balser

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15. “It’s OK to make the doctors, nurses and staff slow down and explain things, it’s OK to question why things must be done a certain way and it’s OK to ask to see test results instead of just going on what was told to you.” —Wendy Brown

16. “One day, you’ll tell someone the story of your child’s stay in the NICU and they will say, ‘Wow! You would have never known, he is perfect!’” —Heather Sumner

perfect

For more information, be sure to visit NICU Helping Hands on the web and Facebook.

*Some responses have been edited and shortened for brevity

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19 Truths Parents of Preemies Wish Others Understood

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Preterm birth occurs when an infant is born before 37 weeks of pregnancy, and in 2014 preterm birth affected one out of 10 infants born in the United States.

Preterm birth is the largest contributor to infant mortality and a leading cause of long-term neurological disabilities in children. Premature babies, or preemies, may have problems breathing and feeding, as well as issues with vision and hearing as well. Though it can be an incredibly stressful experience, advances in medical care have helped more babies survive today than ever before, according to March of Dimes. Still, raising a preemie can seem quite overwhelming.

The Mighty teamed up with Parents of Preemies Day and Preemies to ask their Facebook communities what parents of preemies wish others understood about their experiences. Here’s what they had to say:

1.  “Just because they are small… doesn’t mean they aren’t mighty! They aren’t limited because of being a preemie.” —Karen Scott

Newborn and hand

2. “There’s a major grieving process over not experiencing a full term pregnancy and birth. [There’s] envy over seeing other moms full term pregnant, being able to take babies home, etc.” —Ashley Lappe

3. “A preemie is still a preemie even after they go home. Even when they look and act like kids their age, they are still preemies.” —Beth Schreier

still-preemie

4. “There is no such thing as spoiling a preemie!” —Cara Elaine

5. “Despite being surrounded by so many people (doctors, nurses, etc.) you feel very alone and isolated.” —Kim Elledge Ciuffardi

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6. “They always take one step forward and 10 steps backwards.” —Aletta Marian

7. “Each preemie is different. They each reach developmental milestones differently, some needing more help than others.” —Nichole Wardell

8. “The journey doesn’t end when they leave the NICU.” —Andrea ‘Dolney’ Mullenmeister

Newborn baby in incubator

9. “The affects of being born prematurely are unknown. You never know what issues may pop up after you are out of the NICU.” —Heather Watts

10. “Even though my son looks perfectly healthy, his lungs and immune system are still at risk. I wish [others] understood how I feel it is necessary to keep him isolated for the winter months because I only wish to keep him safe and healthy.” —Kristine Coma

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11. “[It’s hard] to hand my girl to another person. For too many weeks I had to ask the permission of another to touch her, to hold her, to be her mother. Yes, I am possessive; I have earned the right to be.” —Alyson Fisher

possessive

12. “You never feel at ease. It’s like you’re just waiting for bad news.” —Amanda Y. Mangas

13. “It was so hard not being able to hold your baby for days or for some, weeks. It was even harder going home without your baby.” —Erin Elizabeth

Mother and baby

14. “Having a preemie changes your perspective on life. Forever. The fragility of a tiny life, how we take so many things for granted, how life can change in an instant — all of these things affect your world view after you’ve had a preemie.” —Marie Higgins Williams

15. “We are not being antisocial or rude — we are trying to keep our baby healthy so they can get strong. They might look healthy, but inside their immune systems are much more at risk and getting sick is much more serious.” —Elisabeth Cinque

rude

16. “[It can be hard] looking at all the adorable newborn photo sessions. There’s a feeling you were robbed of so many experiences other mothers take for granted.” —Niccole Gifford Owens

17. “I am not being a jerk by asking people to wash their hands before trying to touch my little baby, and I’m sorry, but if you’re a smoker, you really shouldn’t be near my preemie. My baby’s health is more important than how offended you feel.” —James Nik

healthy

18. “Just because they may be struggling and we have to spend time in the NICU doesn’t mean we are any less happy and joyous for our child.” —Amy Lewis

19. “They’re much stronger than anyone expects them to be! They’re tiny and fragile and compromised, but they fight harder than most people on a daily basis.” —Didi Littlefield Hoskins

stronger

Are you the parent of a preemie? What’s one thing you wish others understood about your experience? Let us know in the comments below.

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