When Visiting the Cemetery Reminded Me the Love of a Parent Is Forever

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Holidays are difficult when you have lost a loved one. Of course every single day is difficult, but holidays seem to really be a kick in the gut. It’s a time of love, laughter and family. However, when part of your family is missing, it makes things a little (OK, a lot) sad.

When we were Christmas shopping earlier in the month, my daughter Ellie told me that she needed to buy my late son Robby a present, so she picked out a small matchbox car. Ellie is three and is really into every aspect of Christmas this year, so she also insisted that we wrap it up for him.

On Christmas Eve we went out to the cemetery where Robby is buried. Ellie unwrapped Robby’s present and played with the little red car on his stone. She had received a package in the mail  from Santa the day before which included snow from the North Pole and some Reindeer food to sprinkle in the yard before bed on Christmas Eve. Ellie pulled both containers out of her Minnie Mouse backpack she had packed up and then she “showed” them to Robby. She very carefully took the lid off of the “snow,” put her little fingers in the container,  pulled some out some and then sprinkled it on his stone.

She told Robby that Santa sent her this snow from his house. Then she opened up the reindeer food and did the same thing, as she let Robby know that now Rudolph would know where to find him.

It broke my heart yet made my heart full all at the same time knowing that she wanted to share with her big brother. Her brother who she has never actually met.

A small child putting things on a headstone at the cemetery, a woman kneeling near a grave.
A small child putting things on a headstone at the cemetery, a woman kneeling near a grave.

When we go to visit Robby, I like to walk around “Babyland” and look at the different things out for the other angel babies. I talk with Ellie about the different decorations that are out and we say some of the baby names out loud. I like to say and hear Robby’s name said out loud because it validates his existence to me, so it has become natural to do the same for other angel babies as well.

This year, I noticed several different stones that were decorated for Christmas. They were stones of babies who were born many years ago. These babies were born in 1980, 1986, 1992 and 1993. The 1992  really hit home for me because I was born in 1992. These parents, 23 years later, still come to their angel baby’s grave and put out Christmas decorations.

As I sat at Robby’s grave, I’m going to be honest, I cried a lot.

Several different headstones with Christmas flowers and decorations on them.
Several different headstones with Christmas flowers and decorations on them.

I did not cry because I am living in the past.

I did not cry because I don’t appreciate the beautiful living child that I have.

I did not cry because I can’t move on.

I cried because this Christmas, and every Christmas for as long as I live, I won’t get to see my little boy’s eyes light up on Christmas morning while opening presents.

I cried because he won’t ever have a picture with Santa.

I cried because the love of a parent is forever.

I’m praying for all of the parents who have suffered a loss — whether it’s a recent loss, or it has been many years. A loss is difficult whether it is new or old because the love of a parent is forever.

“I’ll love you forever,
I’ll like you for always,
As long as I’m living,
my baby you’ll be.”

Robert Munsch, Love You Forever

A version of this post originally appeared on Plan B

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How Do You Possibly Find Contentment After Losing a Child?

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One afternoon in April of 2011, a few days before Easter, I took a break from work for an errand. We needed to get gifts for our son Aaron’s basket. What do you give a child who can’t eat candy or play with toys? Simple: CDs and DVDs. I went over to the FYE store and picked up several of both, including some “VeggieTales” episodes.

Veggie Tales DVD Aaron loved “Veggie Tales.” It was among the shows we played each evening as we prepared his meds and tube feeding. We’d sing along with the opening theme, and he would bellow in laughter.

If you like to talk to tomatoes,

If a squash can make you smile,

If you like to waltz with potatoes,

Up and down the produce aisle…

Have we got a show for you!

When I got back to the office with my stash, I realized I’d purchased too much. I’d gone overboard; it was difficult not to. So I set aside one of the DVDs, “It’s a Meaningful Life,” the VeggieTales rendition of Frank Capra’s “Its a Wonderful Life.” It was a Christmas story, so it seemed more appropriate as a gift held for that holiday or, if we couldn’t wait, for Aaron’s birthday in September. I left the DVD at the office, and brought the rest home. That Sunday, the Easter bunny delivered a bountiful basket.

Three weeks later, on a Saturday morning, my wife and I woke and found Aaron had died during the night. Quietly, he’d left us while we slept. He was 7.

Eventually, I returned to work, and on my first day back I found the “VeggiesTales” DVD waiting for me. I’d forgotten about it. I chided myself for leaving it out of Aaron’s basket, as if I should have known there would be no more Christmases for him, nor birthdays.

The DVD is still on my desk, shrink-wrapped as the day I bought it. The box stares at me, its title reminding me this is a meaningful life. The subtitle tells me the show is a lesson in being content. Not in being happy, mind you. Just content.

Now I sit in my office, and mourn Aaron as I do each day, and the Veggie guys watch me. They challenge me with a question: How does someone find contentment after the most important thing has been taken away?

Here is my answer: you work hard at it. You remind yourself that life can still offer bits of joy and meaning and surprises. And you make the choice — the difficult choice — to smile at the squash and waltz with the potatoes. You wake each day, look out the window and take in the world’s buoyant greeting: “Have we got a show for you!”

Aaron and Mike Large

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The Family Photo You Can't Prepare For

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This photograph means the world to me. This photograph is the first, the last and the only family photo that we have. It can never be replicated, and those emotions we depict can never be truly explained.

mother and father looking down at child

Our son, Sebastian, is pictured with us. He was born sleeping at 20 weeks gestation. He was our firstborn, our much wanted and loved son. This photo was taken on the evening I delivered him in August 2015. He died from a lethal form of skeletal dysplasia, more specifically type 2 osteogenesis imperfecta. His body was so much smaller than a baby for his gestation; his legs were too short for me to even feel his first kicks.

His skin and organs were underdeveloped and tore just from being touched. He was brought into the world with every bone in his body broken. His limbs were bowed as a result of constant fractures and healing within the womb. He was one very sick and weak boy. We had been warned a week earlier that he was expected to die in utero at any time, and while we found this news confronting and devastating to hear, we prepared ourselves for the long journey ahead of us.

I am not sharing this story for you to feel sorry for us; I am sharing it to raise awareness about the men and women who walk among us in our community. The one in four Australian couples who also have their one and only family photo; the one in four women in Australia (according to a 2012 Sydney Morning Herald article) who experience a miscarriage or who deliver a still baby.

These men and women are fighters.

For every baby they hear cry in the café, for every baby they see in catalogs, for every pregnant woman they see waddle past them — a piece of their heart breaks. Whether it’s a reminder of the cries they never heard, the clothes they were never able to buy or for the gestational age they never arrived at, their heart aches. There are no words one can say to bereaving parents; nothing can take away the heartache that haunts them for the rest of their lives. The only thing you can do is join with them, help fight their battles and when it gets too hard, too sad and you think they should be over it — think about their first, second and third birthdays they will never get to celebrate. The only occasion they have to remember their baby with is the day they delivered their sleeping angel.

It is far too easy to tell bereaving parents to “get over it” or “you can have another one,” but these words hurt. These words don’t acknowledge the loss that has been experienced, the years of infertility and the uncertainty as to whether future pregnancies are viable. Bereaved parents will never replace their angel baby; they want that baby.

Ever since joining the team of bereaved parents, I’ve realized we are not alone in this, and that no mother, father or grandparents should ever have to be alone in this grief either. For too long this topic has been taboo, and bereaved parents have been forced to hide their emotions. By why? There is a lot I’ve learned from bereaved parents, and there is a lot that society can learn, too. Please remember, it’s OK to talk about the child who has died, celebrate their anniversaries and refer to them by their name (not “fetus,” as most medical professionals prefer). It’s OK to lift others up when they are down and be the shoulder for them to cry on. This is something I have experienced from complete strangers since losing Sebastian, and it’s been the most comforting thing I have ever experienced within my community.

We know all too well that not everyone will be supportive, and not everyone will understand. This is why we can only share with you our family photo that has been edited, where our most prized creation had to be blurred. We’re afraid of how people will react; we’re too afraid of him becoming a focus of interest for people who have not seen a baby at that gestational age or with his physical deformities. We have done it to protect ourselves and our son. That is how taboo this topic is, and that is why I am speaking out this October. It’s the awareness month for two things close to our hearts that Sebastian was affected by – pregnancy and infant loss, as well as dwarfism (a form of skeletal dysplasia).

So, to the moms and dads who have lost their baby, and to the grandparents who have lost their grandchild, you are not alone. Grieve in a way that gets you through it. The pain will not go away, but you will learn how to deal with it better. Be proud of your angel, the baby you wanted, loved and created. We must be brave and insist that people recognize our babies and say their names.

Follow this journey on Words That Start With ‘S.’

The Mighty is asking the following: Share a photo with us and the bigger story behind it. What don’t we see in that photo? 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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Parents Honor Memory of the Twins They Lost in One Powerful Image

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Katy Patten was 23 weeks pregnant when she went into preterm labor in 2011, Baby Center reported. Patten’s twin sons, Aiden and Gavin, were born with heartbeats but could not breathe on their own. They passed away a few days after being born.

To honor their memory, Patten, her husband Justin, and their two girls, baby Giuliana and 3-year-old Ava, did a special photo shoot with photographer Linda Gittins, owner of Lulu B. Photography in Elm Grove, Wisconsin. In it is the entire family, complete with allusions to the twins in the form of shadows.

We wanted to finally have the family photo,” Katy told Baby Center.

family photo honors memory of premature twins
Courtesy of Lulu B. Photography

Gittins took the beautiful photo of the Patten family with their hands intentionally placed so that she could later add in the image of the boys. Gittins used the shadow of her 4-year-old neighbor to complete the scene. Her neighbor is the same age the boys would’ve been.

As the girls get older, we want them to know about [the boys],” Patten told Yahoo. “I want them to know that there were other people in our family and that they’re important to us.”

The picture hangs over the fireplace in the Patten home. Katy Patten, a pediatric ICU nurse, now serves on the Bereavement Committee at her work to help others deal with grief.

h/t Scary Mommy

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5 Ways to Actually Help Someone Dealing With Loss

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When someone you love loses someone they love, it’s near impossible to know what to do for them. The first thing I said to the first person I told about the loss of my baby boy was, “I know, there’s nothing you can say.” I knew there were no words that would make me feel better and wanted to let her off the hook.

My experience of losing my 5-week-old son to sudden infant death syndrome has taught me a few things about how to deal with other people who are dealing with loss. I’ve come up with a list of the best ways to really help someone in the emotionally taxing situation of losing a loved one, in hopes of helping you navigate those complicated waters.

1. Write something memorable in their card.
The only thing I really wanted from people was to know they were thinking about me and my family. Whether someone sent a card, flowers, a text or email, it was so great to know they had us in their thoughts and prayers. Knowing so many people were thinking about us and praying for our comfort really helped me cope with those raw, early days following my son’s death.

2. Make them a meal.
For me, the grief from my loss was so consuming, simple things like making meals and cleaning the house were tasks I just could not do on a regular basis. For the first several months, every day was completely unpredictable and I would never know if I’d be able to function that day or be stuck in my bed under the covers. I remember the meals the most and appreciated them immensely because of the amount of time, effort and thought someone had put into that simple act. It’s easy for you but could mean the world to someone who’s grieving.

3. Give them your phone number.
I had a lot of people I could call when I had bad days, I just usually chose not to. Still, when someone just gave me their phone number or email address and said, “Call or email me anytime” I was beyond grateful. The gesture meant so much to me, whether I used them as a resource or not. Then, when days came up that threatened to take me down, I had a network of people to help with my daughter when I encountered an emotional crisis. Some of the numbers I got saved me several times.

4. Check in regularly.
Right after the death of my son, everyone was wonderful. Condolences were numerous and hugs were plentiful. Then, a few weeks after the funeral, the calls and contact became few and far between. This was extremely hard for me because I felt like I had no support. My suggestion to you is to set a reminder on your phone for every two weeks (or whatever amount of time you are comfortable with) to call, text or visit the person who recently lost someone. You thinking about them long after the hubbub of the funeral will mean the world to them.

5. Be genuine.
When talking to them, be as sincere as possible. Look them in the eyes and convey your genuine sympathies. Keeping in mind the constitution of the person, you can hug them or give their arm or hand a squeeze. They will appreciate it so much more than pointless platitudes and standoffish behavior, both of which do them no good. Most of all, do not tell them they’ll get over it or time will heal their wounds. They know that already. They just need your support.

I hope this list was helpful and gives you an idea of how to help someone who is dealing with loss.

What tips or ideas would you add to this list?

Follow this journey on Melanie Meditates

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Why I Was Wrong About the Clichés I Heard After My Daughter’s Death

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When Eva was born and has since died, I heard a lot of clichés, euphemisms and platitudes that get thrown around when something inexplicably tragic happens. After she was born, the clichés I heard the most were the ones about being a special needs parent. I was told I would meet so many amazing people. I was told that I wouldn’t change Eva for the world. I was told that she would make me into a better person, a stronger person.

I hated hearing those things. I was angry and desperately sad, and I didn’t want to be a better person. I didn’t feel like anyone special. And I didn’t want to be. I wanted the life I had pictured. Not the one where through my miserable and desperate life I would become better and stronger.

I also didn’t want Eva to have to take on the roll of teacher. Why should Eva be responsible for teaching the world about compassion? Why should it be her job to teach her mother about how to live? She didn’t owe anyone anything and being born with those kinds of challenges is not a gift. We can do the best we can with the challenges we face, but that doesn’t mean those challenges are fair, or good or something to be thankful for.

Eva was beautiful and taught me so much, but it wasn’t her job to do that. And while I like the changes she made in me, I would change them back if it meant she could still be alive. I would change them back if I could have given her sight, hearing or a heart without a hole. 

But without trying, or having to or knowing it, she did change me.

I talked to a friend recently and admitted I had found the week hard. Some weeks feel that way. We talked about my feeling of wanting the world to stop, and she told me she was impressed with how I mostly force myself to keep up with the world even if it’s not what I always want to do. And then she said something which should have been obvious to me, but somehow wasn’t. She said, “The irony is, I think it’s Eva that has given you the strength to do that.”

She was right. Being Eva’s mother has changed me. I have no doubt that it has made me a better person. And I am certainly stronger. Having the wonderful girl in my life has given me the strength to get by without her. I could say I wish none of it had ever happened. I would be the person I was before Eva, but I also would have never had to face this loss. And I don’t want to do that. When I looked at that “better person” everyone kept telling me about, I couldn’t see her properly. She was out of focus. But now I see part of being this better person is the realization that you love that change in yourself because it comes from your fierce love for your child.

Those placaters were right. I am stronger. I do feel different. Sometimes that difference hurts. Like when I go out with some friends and I feel like I can’t quite squeeze back into that life that I once had. I feel like I don’t belong there anymore. But most of the time, it makes me feel lit up from the inside. It makes me glow. On that same night when I didn’t feel quite part of the scene or I felt like I was on the outside looking in, I also felt a level of comfort in my own skin that I never did before Eva. I felt a confidence in myself that is new to me. Eva taught me what it means to be alive, and she helped me realize it’s my life to live. That I’m the one behind the steering wheel. She taught me I’m enough as I am. Just as she was. She taught me that I don’t need to please everyone and don’t need to be friends with everyone. I can just be me. And that’s enough.

I wish she was living her own life alongside mine. I wish this new stronger me hadn’t come at such a cost. I wish I could have this woman with Eva by my side. But I’ll be forever grateful that I had her in my life at all and that I was mother for a brief time.

A version of this post originally appeared on The One in a Million Baby.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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