The Brandt children

10 Fears a Parent Who Has Lost a Child Faces

Author's son smiling in stroller These are 10 fears I’ve faced daily since my son died last March 23, 2014 from sudden infant death syndrome (SIDS) when he was 8 months, 26 days old.

1. People will forget. I’ve talked to several mothers who have lost a child, and all of them were afraid that as time passed, people would forget about their child. People — even close family and friends –get busy with their own lives, and something that’s still painful and excruciating to the nuclear family tends to fall off the radar for everyone else. I know this is something that troubles me often, especially because some people have said that since my son died so young, he hardly had any time to make much of an impact on our lives. What does that mean? That somehow because he passed away as a baby, his life had less meaning than someone who lived to be 10, 20 or 30? Life is life, and my son was here. He lived, he laughed, he loved and he changed my life and the lives of many others. That has to count for something. I feel like it counts for everything. I refuse to let people forget him just because it would be easier than dealing with the pain his memory may bring. Anyone’s lost child deserve to be remembered. That’s why I did a balloon release for my son on his 1st birthday (which he saw from heaven). I wanted everyone to come to his grave and remember him with his family on the day he was given to us.

balloon release near grave

2. Being judged for the decisions made post-death. Everyone has an opinion about how someone should handle things and the death of a child is no exception. Should he be cremated or buried? “He was a baby, does he really need such an extravagant gravestone?” If it was your child, would you spare any expense? How much would it be worth to have a place to remember your child, a place that’s all their own? “Do you really need to have a cake for his birthday? It’s not like he will be there to blow out the candles?” No, but it’s important for me, my husband and his sisters to be able to remember his birthday because it still is his birthday, and even though he’s in heaven now, we’re still here and we want to celebrate his special day. “Should you have another baby?” I’ve thought long and hard about this quite often in the last month, although I received that question within weeks of my son’s death. At the time, I was unable to even contemplate the idea. I’ve come to the realization that I want another baby very much, but often it’s overshadowed by my worry that people will think that I’m trying to replace my son or fill his void. What they don’t get is that nothing will ever fill the void he left behind. But having another child will give us something to look forward to and a place to put the love we still have to give. Nothing and no one can ever take my son’s place, but it doesn’t mean I don’t have room to love another baby.

birthday cake reads dylan- our lil buddy in heaven' with a 1 at the top.

3. Becoming a permanently sad person. We’ve all seen them or been told about them. Someone who’s lost someone close to them — often a child — becomes a shell of who they were. They’re unable to enjoy life and avoid certain events because of the painful reminder. They skip out on kindergarten orientation, baby showers, birthdays, Christmas, etc. Everyone whispers about those people: “That’s the woman who lost her baby two years ago, and she’s never been the same since. She’s always sad.” Yes, my son’s death has changed me; it’s still changing me, and it will probably change me throughout my life. But I refuse to allow what happened to define me or shape me into a person I don’t recognize or respect. My son wouldn’t want that for me. He would want me to be happy and healthy. That starts with taking care of myself psychically, mentally and emotionally, which is why I’m in counseling, go to grief group, make myself eat and sleep and go to church. I can’t let myself deteriorate into someone my son would be ashamed to call his mother.

son in army shirt

4. That my own memory will fade. As a parent of a child who’s died, the main thing we have to cling to are our memories of our lives with our child. If we’re lucky, we have video and pictures of special moments and events, but many of us know there are far more precious memories stowed away in our minds — the ordinary, everyday moments. For me, my favorite memory of my son was of him in the morning. His crib was in our room by my side of the bed. Every day, I knew when he was awake because he would either start to babble or blow raspberries. I would open my eyes and look over at his crib, and he would have his chubby hands on the top rail. He would be standing up, peering over the top at me with his beautiful blue eyes with the biggest smile on his face. He would start to bounce and make little excited noises because he’d made eye contact with me, and he knew I was going to come get him. Then he would reach out his hands to me, and I would lift him up into my arms, and it was the best feeling in the world. One of my biggest fears is that his memory will fade over time like so many have from my childhood and young adult life. I couldn’t bare to not remember the details of those most intimate moments of his life. My son loved french fries, musical toys, stuffed animals and cuddling with me late at night. To preserve his memory, I’ve done many things including having a quilt made out of his clothes, had molds made of his hands and feet before he was buried, had five lockets of hair saved and zip-locked clothing he’d worn the days preceding his death so I can have his scent. A friend made a wooden trunk with my son’s name on it to keep all of his toys, clothing and mementos, and I’m currently creating a memory book of his life.

patchwork blanket with dylan's name

5. Wrecking the ones I have over the one I lost. This is something I believe God told me several days after my son passed away. I remember it vividly. I was walking into a store because I needed to find a funeral dress. I was low, so deep down in the pain, I felt it had no bottom. I didn’t want to do anything, and then I heard God speak so clearly into my heart: “You can’t wreck the two you have over the one you lost.” Some days I still don’t want to do anything, and this warning, this purpose, this truth will float into my mind. I still have two little girls I need to live for. They still deserve a childhood even though we all miss their brother. I never want my girls to grow and tell their friends or husband, “I lost my mother on the day my brother died. She was never my mother after that.” I’m not saying I don’t cry in front of them; I do. And I’m not saying I don’t talk about their brother or have pictures of him up because I absolutely make sure to keep him alive in our home. I love my children all the same, but each hold a special place in my heart. And because they each do, I have to make each of them a priority. I make sure to go school functions, parades, birthday parties, and I read to them, play games with them and take them out for special outings, even when it hurts because it’s a reminder that my son will never do those things. I never want my two living children to feel like they matter less because their brother died.

author's children

6. Getting stuck in the grief cycle. Over the past five months, I’ve met several people who have lost children.What I’ve noticed is that one of two things happen: they either become broken and bitter or they manage to push through and heal. The ones who become broken and bitter seem to have gotten stuck in the grief cycle. Somehow they never make it through the middle part and cross over into acceptance. I want to clarify — acceptance does not mean getting over it or being OK with the loss of your child. What it means is you’ve accepted that they are gone and learning to live with it. The problem is that people get stuck in the anger, the bargaining (the whys and the hows) or the depression. They get so bogged down in it, they can’t find their way out. Most become bitter, some live in denial and others in avoidance. I feel all of those leave you with an emotionally stunted life and unable to remember your child as they deserve. For me, counseling was key. A counselor can help you find your way out. My counselor says that’s his job: to make sure I never stay too long in one area of grief.

dylan and mother

7. Having to explain what happened. Most people don’t know much detail about SIDS. To be honest, until my son died from it, I didn’t either. Only through research and SIDS group conversations have I been able to grasp what happened to my son. Basically, when there’s no other explanation medically for a child dying, it’s SIDS. Doctors believe it’s either the respiratory system or the brainstem malfunctioning during growth spurts but not enough research has been done to really pinpoint what causes it. Every time I have to explain what happened to my son, it’s like living the pain of his death all over again. Some people seem to have a fascination with tragedies. I had people contact me and my mother asking for all the details only days after his death. And these were people who we were not close to and some that we had not talked to in years. What’s even worse is when I have to explain to a stranger what happened to my son. “How many kids do you have?” We are all asked this often — at the grocery store, by a new parent at your kid’s school, at the doctor’s office. And almost always when I tell them that I have three children, they ask “Where is my third one?” Then I reply that he’s in heaven now. “Oh, my gosh, I am so sorry! What happened?” Then I have to tell that person he passed away from SIDS. The worst part of this scenario is that I receive pity stares. I hate when people give me a look of pity. I’ve given that look, and I know what most are thinking, “That’s so awful! God, I’m so glad that didn’t happen to my child! That poor woman!” I don’t blame them for thinking it; it’s a parent’s worst nightmare, and I’m living it.

8. Letting my marriage crumble. One of the first statistics someone thought they needed to share with me after my son passed away was that 80 percent of marriages end in divorce after the death of a child. They thought they were warning me of the pitfalls ahead, but what they didn’t realize was that they were putting a fire in me to beat the odds. My husband and I have beaten bad odds before. When he was involved in a horrific car wreck eight years ago, he’d been given only a 20 percent chance of living, and if he did survive, they told me he would be brain dead. Not only did he live, he didn’t have any residual cognitive damage. I was also told after his car accident that due to the strain on our marriage from the severity of his injuries, we would most likely end up divorced because 90 percent of brain injury victims supposedly do. We proved those odds wrong as well, and I know we will do it once again because we learned what not to do through his car accident. We don’t blame one another. Yes, my husband was watching my son when he passed away and during my bargaining moments, I question whether it would have made a difference if he’d been there the exact moment it happened. But then I think about the fact that I watched my son the majority of the time, and how would I feel if my husband blamed me if it happened when he was with me instead of him? I wouldn’t need the added guilt of his blame because I would be doing enough for the both of us. That’s why I’ve made it a point to never accuse, blame or guilt my husband over what happened. I remind myself it was SIDS, and it couldn’t be prevented even if he had been in the room when it happened. We also learned the maintenance needed to keep our marriage in good repair. We go to couples grief counseling, we go out on dates, we go to church together and we talk about our feelings regarding the loss of our son. We make it a point to work on our marriage and to be patient with each other during this extra difficult and sensitive time. We’re not perfect. We falter and we fight, but we never go to bed angry, and we always say we love each other.

parents at grave

9. Losing another child. This is probably my biggest fear. Some days I can barely breathe. When they say the pain in unimaginable, that word doesn’t even begin to measure the severity or depth of the pain one feels when their child is taken. If I feel this way now, I can’t even comprehend having to live through it again if one of my daughters died. I fight the urge to be overprotective and struggle to find a balance between my need to keep them completely sheltered and allowing them to be children. With allowing freedom, you have to accept that there’s a distinct possibility they could get hurt. I worry about my two living children often but realize it’s amazing what humans can endure. I’ve learned that the rain falls on the good and bad alike, but what matters is how we handle life when the rain comes. I’ve realized through my son’s passing that life is precious and fleeting and in a split second, things can happen beyond your control. And when something truly tragic happens — I’m not talking about losing a cell phone, chipping a newly manicured nail or not getting one of the tacos you ordered at lunch — when something completely turns your life upside down, you decide if it’s going to make or break you. It’s hard to get out of bed; some days all I want to do is cry, but I don’t know how much time I have with the ones I love, and I don’t want to miss out on anything. I choose to live and realize that yes, I could lose another child, but they are here now, and I should make the most of the time I have with them rather than dwell on fears of what might happen down the road.

author's children

10. That I will never feel as happy. Every day I wake up and it’s like a reset button is pushed in my brain. For the first few seconds, I temporarily forget my son is dead. The pain isn’t there until I look over at where his crib used to be and I remember he’s gone. Then it’s like losing him all over again, and the horrible, gut-wrenching, unbelievable pain takes hold. It lingers throughout the day, and sometimes it lessons but always comes back with a vengeance. My counselor tells me this is a normal part of grieving, but it scares me because it makes me wonder if I will ever be as happy as I was when he was alive. He was the center of my world. I had plans for us. His sisters were both going to be in school full-time, so the days were going to be ours to go to the park, mommy and me gym, and story time at the library. All those plans have been destroyed. I will never get to hear him utter his first words, see him go to kindergarten, be in the school play, figure out which sports he likes, go to college or get married. It’s hard to accept that he had such a short life and that all I will ever have is what he did in just nine months. But he did a lot. He went to the beach, SeaWorld, Disneyland, Universal Studios and the San Diego Zoo and spent time with all his loved ones. And I have those memories to cherish, and I know one day, I will wake up and I can remember the happiness he brought me during his life rather than the sadness from his death.

dylan and a disney character

Follow this journey on Jenna Brandt’s blog.


The Hardest Part of Being a Parent

I was recently asked to reflect upon what the hardest thing is about being a parent.

It’s advocating for a sick child with professionals who are supposed to know far more then you do.

It’s the looking at other children and asking, “Why us?”

It’s looking at other children and thinking, “Thank God that’s not us.”

It’s the guilt, the shame, the denial and the blind spot you have for your child.

It’s the assumption that you’re always prepared, planned and organized for whatever the day may bring.

It’s staying up late and getting up early, always being on and always having the right answer.

It’s not knowing how to trust your parental intuition.

It’s the responsibility of caring for your child even when no one is looking.

It’s feeling guilty that you can’t wait to leave to go to work for some relief.

It’s the worrying when you’re not home that you should be there.

It’s the constant fear that you’re failing at the most important job of your life.

It’s remembering who you were as a person before becoming a parent.

It’s remembering who you wanted to be as a parent someday.

It’s the long days and short years.

It’s feeling, more often than not, that you are half-assing everything and succeeding at nothing.

It’s finding time to shower, think and blink.

It’s the laundry.

And the grocery bills.

And the medical bills.

And the life bills.

It’s everything you don’t see on Facebook.

34 Spouses Describe the Moment They Knew a Diagnosis Wouldn't Break Their Marriage

No marriage is perfect, and parenting a child with special needs can take its toll on any relationship. But instead of focusing on divorce rates, The Mighty wanted to hear from our readers about the moment they knew a diagnosis could never break their marriage.

This is what you had to say:

1. “My husband and I have always dreamed about a little house on the river. And I knew it would be OK when he said, ‘We might need three rocking chairs on the porch so she has a place to sit with us.’” — Sandy Berens Salinas

2. “My husband held me as I was crying; some people had been staring and whispering at us at a family festival. I was worried no one would ever be friendly when we went anywhere, and his response to me was, ‘We don’t need anyone else. We’ll be each other’s friends and company.‘” — Rachael Bradley

Screen Shot 2015-02-05 at 8.59.05 AM
Mike (dad) and Landon Bradley

3. “We were in the NICU hallway right after our son was diagnosed with Down syndrome, and I looked right at my husband and said, ‘I will understand if you want to leave us, but I am keeping my son and bringing him home.’ He was so shocked that I would even say that. He replied, ‘No way, I would never leave. We are in this together.’” — Dawn Rewerts Jenks

4. “My son’s dad and I broke up before the official diagnosis of autism was made, but it would’ve ended regardless. I knew our son was autistic, and anytime I brought it up, my husband always called me a hypochondriac. Now, almost two years later, we still aren’t together, but I feel like the diagnosis brought us together to this place where we are actually friends and are successfully co-parenting. The diagnosis ended all the fighting for us and made us realize what’s really important is our boy and helping him reach his maximum potential.” — Brittany Nicole Rose

5. “I was still pregnant when we got our diagnosis at the doctor’s office. I burst into tears. My husband put his arm around me, and the doctor left us alone for a moment. My husband said, ‘We are going to give her the best life she can have.’ And that was it. We didn’t even know then what exactly we were in for, what the diagnosis meant exactly, but we knew whatever happened, we were in it together, and we would be there for her, as a family.” — Jennifer Morgan

6. “The day after our unborn daughter’s diagnosis with spina bifida, I was on the couch, back to the world, tears freely flowing. I was deeply grieving the baby I thought I was pregnant with before finding out there were abnormalities at our ultrasound. I’ll forever and ever credit my husband for saving me, and I’ll never forget him sitting down next to me and saying these words: ‘Cheer up, Charlie (his nickname for me). This isn’t the end of the world.’ I knew in that second we would get through this and do it together. That was three years ago, and we’re rocking this whole ‘special needs parent’ thing, if I do say so myself!” — Kristen Slone

Rob, Kristen, Quinn and Liv Slone

7. “My husband looked at our daughter with Down syndrome and then me and said, ‘We asked for a healthy baby and we got a healthy, perfect baby girl!’ We were young parents at ages 25 and 26 and didn’t know our daughter had Down syndrome before birth. It was quite a shock, but my husband had just put everything into perspective with that one sentence. She’s healthy and perfect. Twenty years later, our marriage is stronger than ever.” — Barb Check Goldinger

8. “We were in the NICU. We came home one night, and I was a mess. Our son had a brain injury at birth, and I wept and cried thinking about his future. My husband comforted me and carried me. A few nights later, I was feeling much more optimistic about things, but he was struggling. So I comforted him and carried him as he cried. It was the most beautiful balance of one carrying the other when we needed it, and I knew we were in one of those ‘worse’ moments in our ‘for better or worse’ vows, but I knew we would be OK because he carried me when I needed it and let me carry him when he needed it.” — Lindsay Vanzandt

9. “After the diagnosis, we both took the rest of the afternoon off, drove to the park and talked for four hours. We made agreements about boundaries with the outside world and making us the important thing. Above all else we were a family, and she was no less our daughter. We spoke about not letting it take over our lives. We agreed that we didn’t know how we were going to get through it, but we were going to get through it together. We almost separated before the talk. That was 13 years ago, and we are still happily together.” — Maura Fenlon- Treffeisen

10. “About a week after we got the official diagnosis, the doctor called my wife to follow up. I could tell from her face and tone that she was struggling to keep it together, and she had tears in her eyes by the time she hung up. She told me after that he was explaining all of the things my son would never do, including talking. For some reason it was really important to him that she understood my son’s limitations. She was upset, and I was angry, so we agreed that he could go **** himself, and we would not take anymore calls from him. He might be an expert in autism, but he’s not an expert in my son. That day we vowed to always believe in our son and never put limits on what he could accomplish. That was the day I knew that our marriage would be fine. We have our struggles, but when it comes to my son, we are fighting on the same team.” — Darrin Steele

11. “My husband and I have always been close, but our son’s cerebral palsy diagnosis has brought us even closer. One of many reasons I know it’ll never break us is because we know exactly how to comfort each other — whether it be from words, a hug, a silly joke or the indescribable feeling I have when he tells me, ‘Everything is going to be all right.’ I love our perfectly imperfect life, and I thank God every day for my husband and son.” — Sarah Trygar

12. “We were in the kitchen, trying to talk quietly about our then 2-year-old son so our 7-year-old daughter couldn’t hear. My husband was very teary; I was inconsolable. The diagnosis meant the world would not see our son for the perfect little boy he is. When people ask us how do we cope, we say ‘Sam deals with it, and he’s always got a smile — so who are we to be any different? We are just the bystanders helping him.’ I honestly wouldn’t choose anyone else to travel this journey with. Our little boy doesn’t let anything stop him, so why should we?” — Jodie Verwey

Jodie, Sam, Michael and Charlotte Verwey

13. “Our son, Matt, was about 3; we knew he was going to be very limited. I wondered out loud if we should just have Matt and no more children. My delightful husband, Ed, said, ‘No. We never planned on just having one child, and if that child is just like Matt, then we’ll love that child, too, just like we love Matt.’ We’ve been married 32 years. Matt is now 28, lives with us and makes us laugh every day. His brother, Neil, is 24 and a struggling actor in New York City, and our third, Jeff, is 20 and a sophomore in college. Plenty of love to go around for all.” — Susan Crowe Brown

14. “I came home in tears, and my husband looked at me and said, ‘OK. It doesn’t change anything for me. It doesn’t change how I feel about her or make me love her any less. It just means we have to change the way we look at the things she’s doing and find the right way to help her cope. She’s still my daughter, and she’s not different; she’s special. She’s still my shadow and my goofball. You do the research and teach me what I need to do to help her when things get too hard for her. I’m her daddy, and that will never change.’ That was when I knew the diagnosis wouldn’t change our family.” – Jennifer Elizabeth

15. “My husband and I held each other and cried, and after what felt like days of silence, he wiped my tears away and asked me, ‘What do we do now?’ We came into this as a united front, and years later we are united in our path to ensure all of our children a good life.” –– Veronica Phillips

16. “Before Sadie was even born, we got a triple screen test with odds that she’d have Down syndrome. We both left work and talked and cried and talked some more and agreed it didn’t matter to us — she was our daughter. We would love and care for any child we had. She doesn’t have Down syndrome, but does have a rare genetic disorder. We are always vulnerable, together.” — Elisabeth Johnson

17. “We knew being parents would be hard. We expected that. And we realized it would be even harder than we thought during my little guy’s first few months of life. And around his first birthday, we realized we could indeed do hard things together.” — Kinder Love

18. “The diagnosis absolutely bonds us closer. I feel like we fight a mini battle together each week. He always wrangles me in when I start to spin out. When we win some of those mini battles, we celebrate in small moments together. It constantly feels like we have a secret language only we can understand. Each loss and win feels like it builds our family kingdom yet one layer stronger. When we lose some mini battles, he gives me the required 48 hours to lay on the floor and cry; then I know I need to get up and start again or he’s coming to kick my butt into motion.” — Birgitte Ravn Miller

19. “After the neurologist gave us our daughter’s diagnosis, my husband turned to me and said, ‘We’re in this together, forever.’ And we have been.” — Laurie Brennan

20. “Shortly before the diagnosis, we were sitting in the office of the psychologist, who said something we both already knew: ‘Looks like you are both in different places in this.’ Yes, we were. I knew our little boy had autism. My husband wasn’t ready to accept it yet, but I accepted where he was and he accepted the reality of further testing and therapies. I knew that if we could survive the reality of a diagnosis, we could make it. And we have. That was over three years ago.” — Becky Thomas

Rick, Daniel, Alex and Becky Thomas

21. “We made our marriage vows almost 34 years ago and promised each other and God to stay committed. Of course, at that point, we had no idea what life would bring. Our youngest daughter, who is now 20, has severe, nonverbal autism and functions at a 2-year-old level. We knew the moment we were married that we would stay together because we decided to not allow ourselves to see any other possibility. When the relationship suffered, what was still there was commitment. When hope was low, commitment. Times when we didn’t like each other very much, commitment. During all the tough phases of marriage, a promise made 34 years ago was what saw us through. Now having so much history, I cannot imagine not being together. No one else shares the experiences we’ve had together. No one else loves our daughters the way we do, no one else shares the pain and loss, the hope and joy, the time and experience nor the love we do with each other. He is a good man, and I thank God for him.” — Shelly Boeve

22. “I know every day, because we make a conscious decision not to let any of the stressors of life break us. Our ‘special’ son is the soul of our family.” — Jamie McQuade Lewis

23. “We were driving to take my son to be placed in a mental hospital. He was suicidal, and we feared for his safety. We both wanted to cry, but we somehow found a way to take turns as the supporter and supportee.” — Tracy Lyons Spencer

24. “At one point, at the beginning of going through the diagnosis process, I thought we wouldn’t survive. I started seeing his differences; his father did not. He said he was fine. So when I cried, I cried alone. I felt alone… The day we got the official diagnosis, we cried together. We’ve been on the same page for six years now.” — Karen Cornell

25. “I knew we would be OK when my husband said, ‘If I have to work forever to take care of my son, I will.’ We have come to the reality that our son may be with us till our last breath, but we will do it together and the good times will outweigh the bad times always.” — Patricia Duke


26. “The diagnosis brought us closer. We’ve always been best friends, but once we found out about her diagnosis, our bond grew stronger. We are her advocates and she needs us just as much as we need each other.” — McKenzie Swetnam

27.I don’t know if we’ve had one defining moment that confirmed we’d always be a team –it’s all the little moments that add upI’m definitely the more high-strung worry-wart. My husband is laid back. There have been many times during our journey where I get stuck in the ‘what ifs’ and worry nonstop about the future. It’s in those moments where my husband looks lovingly at our awesome little boy and says, ‘He’s going to be just fine.’ That eases my fears. It’s something about the way he says it that makes me realize he truly means it and believes it, and then I believe it too. I couldn’t do this without him.” — Kristy Nickerson

28. “When he realized I wasn’t making up the diagnosis. When he saw it, and we began to advocate together. It is our passion.” — Leasha Teel

29. “I called my hubby at work to tell him we got our son’s diagnosis, and he was as shocked as I was. I knew we would be OK when he said, “OK, so what does he need? What do we do? How do we help him?” It was about our son and getting him what he needed versus thinking about whose fault it was or why our family.” — Leidy Jesse Garcia

Jesse, Sydney, Seth and Leidy

30. “The moment my husband first said, ‘My daughter has autism’ two years after her diagnosis, I knew we’d be OK.” — Katrina Reppert

31. “Interesting thing is, I’m not sure my marriage would be intact without the diagnosis. Neither of us could raise my child with autism without the other’s full participation. We’re both in it for the kids, who need us together so much more due to the diagnosis.” — Allis Snyder

32. “Our son got a preliminary diagnosis at 4 months that he was possibly blind. It was then that it looked like life was going to get tough. My husband and I sat down that night and decided that whatever this was, it was going to make us stronger and we would rely on each other to get through. I’m so thankful we made that decision, because the initial diagnosis was incorrect and the actual diagnosis was far worse than any parent ever wants to imagine. Through it all, one thing remained — our love and reliance on each other. I’m thankful every day for my hubby.” — SarahandLayne Coates

33. “My daughter’s diagnosis brought my husband and I closer. He’s always been my support, even when I thought it was my fault or that my genes could have caused it. He said, ‘I would never blame you; you have given me the most beautiful daughter, and if all of our children are like her, I wouldn’t mind. She’s made us into the persons we are today, and I’m grateful for that.’” — Tamara Chavez

34. “We’d made this incredibly beautiful human being, and we knew we’d fight for his life no matter what it took to keep him here, to make him happy and to offer him the best life possible. No matter what that meant. Six years later, that marital bond continues to be the strongest rope with the tightest of knots. We cling to each other on the hardest of days and celebrate small joys that most could never understand. It’s created a special marriage and at the heart of it is a little boy named Noah.” — Stacy Warden

Stacy Warden
Stacy, Noah and Chris Warden

Did you experience a moment like this? Let us know in the comments below. 

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This Is What It Means To Be a Parent to a Child With Special Needs, In One Word

There are so many different ways to describe the experience of being a parent to a child with special needs, but we at The Mighty wanted to know how you would explain it. So we asked our readers to pick one word that speaks to what it means to dedicate yourself to raising your one-of-a-kind child.

These are the words you chose:

Emery Grace, 2.
Will, 13.
Olivia, 4.
Jon Alex, 17.
Celine, 1.
Addie, 4.
Ben, 12.
Dawson, 11.
Nathalie, 4.
Tillman, 5.
Billy, 14.
Audrey, 8.
Van, 10.
Tess, 11.
EZ, 10.
Alisyn, 4.
Saye, 23, and Jackson, 22.
Seth, 2.
Sam, 9.
Savannah Mae, 3.
Journey, 8.
Ethan, 13.
Libby, 10.
Cameron, 4.
Cody, 4.
Mason, 3.

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chris evans and chris pratt at the super bowl

Chris Pratt and Chris Evans Put Surprise Twist on Their Super Bowl Bet

Actors Chris Evans, also known as Captain America in the most recent Captain America films, and Chris Pratt, who played Star-Lord in Guardians of the Galaxy, are following through on the epic Super Bowl bet they made two weeks ago.

The two used Twitter to make a little wager, deciding that the outcome of the big game would determine whether Evans would be visiting Seattle Children’s Hospital with a Seahawks flag or whether Pratt would be wearing a Tom Brady jersey at Christopher’s Haven, a home for families battling cancer in Boston.

Last night, Pratt graciously admitted defeat.

But Evans was quick to ensure that both cities will be getting a visit from Star-Lord and Captain America.

Get excited, Boston and Seattle, because both of these heroes are coming for a visit!

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How to Survive Being Stared At

906874_777845878899609_635839321_o The other day some kids stared at me. My son’s class was meeting at the park to perform their year-end songs, and I decided to surprise Sam by coming. Earlier I told him I had to work, so when his friends saw me walking toward the park, they started shouting, “Sam! Your dad’s here! I thought you said he was for sure not coming?!” Sam ran to me, smiling sheepishly and wrapped his arms around my neck. Then his friends came over. There they stood. All lined-up, their little 7-year old fingers pointed at me like an adorable firing squad. “What happened to his arm?” some of them quietly asked. “Hey, boys,” I said. I mean, I’m used to this.

I was born missing my left arm just below the elbow. People have been staring at me my whole life. Heck, I stare at me when I walk by a store front or when I see myself in a video. I’m different; it’s a fact of life. So, those situations at the park are not altogether uncommon. Kids are curious. They also have no sense of decorum. And that’s totally cool, but honestly, it’s still hard sometimes. It’s hard to be stared at, even when it’s been happening to you for 33 years.

So, how do I deal with it? It helps me to remember a few things.

Kids don’t know any better. I’m not saying kids aren’t smart or anything; I’m just saying they’ve (probably) never seen somebody like me ,and their brains are still in that stage where they’re like, “HOLY CRAP. THAT DUDE IS MISSING HIS ARM. I MUST KNOW WHY. I WILL ASK HIM IMMEDIATELY.” I think my favorite reaction is when I tell them that I was born without it, and they say, “No you weren’t. Where is it really?” They’re convinced I’m somehow hiding it. It’s awesome. So, yes, it can still be somewhat awkward when kids stare, but I can’t fault them. They’re curious — and for good reason.

Parents usually don’t know any better, either. Honestly, parents are harder to deal with. Don’t get me wrong, I’m not mad at them. I kind of pity them, actually. Most of the time they have no idea how to react when their child gets vocal about my arm. And I can’t blame ‘em. I mean, that’s not one of those things you practice with your child. ”Ok, so if we happen to see someone with one arm today, let’s make sure we politely say hello and walk by them without staring. If you must ask them what happened, please do so with dignity and tact.” Right. Usually the kid blurts out, “HE’S GOT A BROKE ARM!” and the mom’s face contorts in terror while she tries not to stare at me and then yells at her kid to be quiet. Awkward. So, for all you parents, take the opportunity to teach your kid that it’s OK to be curious and then help them ask the questions they’re wondering about. Everybody wins when that happens.

We are all infatuated with differences. Did you ever have that little, thick Guinness Book of World Records when you were a kid? The one with those humongous twins on tiny motorcycles? And that super tall guy? And the dude with the fingernails that curled and curled because they were so long? Only now do I recognize the irony in my obsession with the abnormal. The fact is, differences catch our attention. And that’s not bad, it just… is. I notice people stealing glances at my arm during conversations, and it doesn’t bother me a bit. I know they can’t help it. They’re not trying to be rude. It’s like looking at a white sheet of paper and trying not to stare at the bright yellow blotch in the corner. Impossible. I understand that.

While these ideas help me to some extent, the reality is that sometimes it still hurts to be stared at. Maybe you feel the same way. Maybe you’re tall. Or short. Or overweight. Or you have red hair. Or no hair. Or you limp. Or you use a wheelchair. Or you’re blind. Or you’re a different color than all your friends. It could be anything. I want to tell you that it’s OK to not enjoy being stared at. I also want to tell you to accept that it is a fact of life. Most people don’t mean to be rude. Most people don’t even want to stare; they just can’t help it.

I challenge you to believe that you were made just right. I had an atheist college professor named Dr. Goodpaster (delicious, right?) who once asked me, “Since you believe in God, shouldn’t you be mad at him for making you that way?” Despite being horribly offensive, his question does make sense. Well, it does if you believe the only people worth anything are the ones who are perfectly shaped. I told him, no, I don’t believe I should be mad at God. It’s my belief that he made me this way for a reason. And I believe He made Dr. Goodpaster the way he did for a reason. And I believe he made you the way He did for a reason.

I believe each of us are wonderfully made.

It makes surviving the stares a little bit easier.

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This post originally appeared on Living One Handed.

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