365 Days After You Lose a Loved One

4k
4k
5

In the last 365 days, we have faced and surmounted a litany of firsts — from big ticket items like holidays, birthdays and anniversaries to smaller hurdles like the first time my mom had to zip up her own dress or the night I absentmindedly called my dad’s phone and heard it ringing in my own desk.

Today is the last first. The first anniversary of his death.

In some ways, it feels like just yesterday he was standing in my kitchen, and in others, it feels like I have aged a lifetime in these 365 days. A year is so short but the days are so long.

I remember every detail about that day — what I was wearing, what I made the boys for dinner, the smell of sand and salt lingering in their hair as I kissed them goodnight, the text I was about to send when I heard my mom yell, the way he looked lying on the ground, the moment I had to choose between being a daughter and being a mother.

My son had had heard the screaming, the calls for 911, the frantic thumping of feet up the stairs, and he called out for me — a guttural cry that came from a fear so deep it could form no words. And I had to choose. Left or right. My father or my son.

I hesitated for a fraction of a second, trapped in the space between childhood and motherhood, before I knew where I had to be. You might think I made the wrong choice. But until you have stood in a hallway yourself and had to choose between the man you came from and the boy who came from you, you have no idea.

Our job — our instinct — is to protect the people we love from unbearable pain whatever the cost. I could not protect my mother, my brother, my husband — they had seen it, touched it, felt it. But I still had a chance with Jack. I felt a desperate need to shield him, even if for just one more minute.

So I lay in bed, listening to the muffled voices of the paramedics, with my body wrapped tightly around my sobbing, panicked child, and I told him everything was going to be OK. It wasn’t a lie because in my heart I still had the hope of the little girl who had danced on her father’s feet and fallen asleep on his chest. The little girl who believed in Santa Claus and fairy tale endings. The little girl whose father had always fixed her problems and soothed her hurts. Surely he would do it again. As I whispered in Jack’s ear, I wasn’t just reassuring my son. I was reassuring the little girl that was still inside me.

It is human nature I suppose to ask yourself in these moments, “Why me? Why him?” But if you think about — if you really think about it — we never ask, “Why me?” in the midst of great fortune or happiness. Just as we accept the blessings and graces that life bestows upon us without question then, too, we must accept the heartbreak.

In my 39 years, I thought I was a grown up many times over. The first time my parents let me have wine with dinner. Getting my first real paycheck. Getting married. Buying a house. Becoming a mother. But I was wrong.

The moment you grow up is the moment you realize that beautiful things happen and terrible things happen. And sometimes they are one in the same.

Today is just a day. I will miss him no more or no less than I did yesterday. When the clock strikes midnight, there will be no magic wand that erases our grief or fills the void. Nor would I want there to be. There is no expiration date on grief. Grief, after all, is just a measure of the vastness of our love. Grief never really ends because love never ends.

As my dad wrote me on the eve of my departure for college, “We have not reached the end of the line, just the termination of this route. We are all changing trains, still journeying on together, destined by blood and love to cross and recross one another’s trails.”

Today is just a day. And if I’m lucky, tomorrow there will be another one. And every day is another chance to love hard. Every single moment. And if you do that, you will never have a moment of regret.

I love you, Daddy. Until our trails cross again…

Cameron Reeves Poytner the mighty.1-001

Follow this journey on Lucky Orange Pants.

4k
4k
5
JOIN THE CONVERSATION

RELATED VIDEOS

What Hospice Did for My Family in the Last Days of My Son’s Life

1k
1k
2

Death is a taboo topic in our society. I am now six months on the other side of this topic. My beautiful son, Jai Tru, had cerebral palsy, epilepsy and traumatic brain injury; he passed away at just shy of 5 years old. It was his warrior spirit and love that kept him going.

I want you to know that every family is different, and there’s no one way of coping that fits all grieving parents who are caring for and have cared for a child with a life-limiting illness. This is our family’s experience.

Early in Jai’s adoption, my husband and I had to redefine parenthood. We couldn’t protect our son from his health issues. Our only goal was to give Jai the best quality of life. We knew that the definition of “quality” would be unclear, reliant on his needs and what we were able to provide.

The marvel in this situation was the reality of Jai’s joyful spirit. Although he was in constant pain, he never seemed to go one day without smiling. He loved when I read to him. He loved when his sisters sang and danced with him. He loved the racket of noise his brothers made. He liked to stay up late and lay on his daddy’s chest for hours. He filled our home with his contagious laughter. I’ll never know Jai’s thoughts, but our connection was powerful.

During Jai’s multiple hospitalizations, I was often perplexed about how a person could be in so much pain, yet always be ready to greet everyone with a light-up-your-world kind of smile and laughter. Oh, how I wish I could bottle and keep that laughter. The only answer I ever had was love.

When Jai was dying, I wanted him surrounded by love, warmth and family. I didn’t want him dying in the florescent-filled space of a hospital bed. I wanted Jai with us and in the place he was most at peace. The thought of him dying didn’t terrify me as much as the thought of him not being able to pass peacefully.

We believe that how many days you live on this Earth isn’t the primary measure of a life, that the quality of days is more important than the quantity. We feel hospice isn’t about end of life or death, but about adding life to days when days cannot be added to life. This is why we chose hospice.

When one of Jai’s doctors handed us a brochure for a pediatric care organization, I was relieved. I honestly didn’t know Jai would pass so quickly (about seven days later), but hospice was an amazing experience for all of us. The team seemed to understand intuitively the special needs of children. I was amazed at how ready and able they were to give support and address Jai’s and our family’s needs physically, developmentally, emotionally, psychosocially and spiritually. It was a relief to know we could reach out anytime with questions, fears and desires and receive answers that made sense and calmed us.

For our family, hospice offered a new model for how we perceive death. Hospice doesn’t preclude curative treatment, but it does require different questions to be asked and different priorities to be considered. It was a relief to focus on the quality of Jai’s existence now and provide freedom from pain and discomfort while making the most of those last moments.

Those last days, we laughed, cried and made memories. When Jai passed silently, beautifully from this world, we held him, we cried, we even smiled and made more memories. Hospice had done so much of the preparation that we were able to focus on our family, our love and things that were important and meaningful to us.

We walked together to the edge of the cliff so many times that when the final hour came, I have to say, we breathed a big sigh of relief. I suppose these are feelings a parent should never have, never acknowledge and most certainly never put down on paper. But I’ve learned to embrace parenthood with a truthfulness that appears brutal.

I didn’t really want to see my son take his last breath. I didn’t want to know life without him. Our family worked hard to give him the best possible quality of life, and we utilized hospice to give him the best quality of death. Hospice helped us realize what was important in our family and what we believed was important for Jai.

My children say that witnessing their brother’s death during that time changed their whole idea of death. They no longer look upon it as frightening and unknown. Even now, Jai’s name comes into their conversation and play time. They happily tell even strangers about their brother.

My youngest daughter won’t allow me to say, “We lost him.” She says, “Jai isn’t lost, he’s always in your heart and my heart and the hearts of everyone who remembers him.” His joy infuses our lives, giving us the strength to carry on.

A version of this post originally appeared in Complex Child Magazine.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio.

1k
1k
2
TOPICS
,
JOIN THE CONVERSATION

The Delectable Way This Cab Driver Turned Immense Grief Into the Sweetest Ride in the City

62
62
1

When this New York City cab driver lost his son, he channeled his grief into a way to make his passengers smile. Now he needs your help.

Mansoor Khalid, 38, has been a cab driver since 1996. In 2010 his son was born with a congenital heart defect, according to The New York Times’ blog. Khalid would drive his cab during the day and visit his child at Montefiore Medical Center in the Bronx at night. Each time he visited, he would bring coffee and sweets to the nurses and doctors. He liked spreading positivity in an otherwise grim place, so he kept doing it until his son died in April 2012.

When he finally returned to work, he wanted to chase the feeling he got from bringing sweets to the hospital. That’s when he had the idea to turn his cab into the “Candy Cab.”

 

Khalid has since become famous for filling the back dashboard of his car with candy. Passengers are encouraged to take as much as they want.

“Everybody is depressed, stressed, New York City is not an easy life, so when New Yorkers see all the candies, chocolates, they cheer up,” Khalid told The Times. “Some people start screaming, they’re so happy.”

That’s not all. Last year Khalid dropped $4,000 to install lights and speakers to the back of the cab so passengers can plug in music and sing karaoke. He’s since acquired a vast social media following on FacebookTwitter and Instagram for people to share their rides and request pickups.

However, on Sept. 3 the Candy Cab broke down, according to “Today.” Because of debt he and his wife accumulated while paying for their son’s treatment, he can’t afford a new cab. After making the announcement on social media, many followers suggested he start a GoFundMe page to raise money for a new cab – so he did.

“I really want to continue as a Candy Cab driver and provide my dear fans, NYC visitors and riders with opportunities that are memorable and full of fun and most importantly continue the good cause (making people smile),” he writes on the donations page.

He’s offering a free ride to anyone who donates at least $100. His end goal is $50,000. He plans to use any excess funds on more candy, which he says costs him between $400 and $600 each week, according to “Today.”

You can donate to help get the Candy Cab back on the streets at Khalid’s GoFundMe page here. Watch the video below to see the cab in action.

Smile more. Like us on Facebook.

62
62
1
JOIN THE CONVERSATION

Heroes Finally Get the Recognition They Deserve

19
19
0

Veterans with disabilities are finally getting the recognition they deserve.

On October 5, the American Veterans Disabled for Life Memorial (AVDLM) will officially be dedicated and opened in Washington, D.C. The $80-million memorial will honor the country’s four million veterans who return from service with some kind of disability, according to AVDLM’s website. In addition, the memorial will honor those who take care of these wounded heroes.

One such caregiver is Donna Joyner, who’s been helping her husband every day for the last 33 years. In a profile in The Washington Times, Joyner describes how she cares for Dennis Joyner, a triple amputee who lost both his legs and his left hand while serving in the Vietnam War. She eventually quit her job in 2008 to care for him full-time. She told the paper:

I gave up my job, the income, any pension that I would have received. I will not get as much Social Security when I get to be that age because I had to leave and take care of my husband, because my husband was totally incapacitated, and we did not want him to go to a rehab facility, because he wouldn’t get the care at a rehab facility that he would with me. That’s where the compassion comes in.

The new memorial is completely handicap accessible and features 12-foot granite walls with inscribed quotes from leaders like George Washington and Dwight D. Eisenhower, according to The New York Times. There’s a star-shaped fountain — one point for each branch of the United States military — with a flame at the center. It also features bronze statues, which blind visitors are encouraged to touch.

Screen Shot 2014-09-10 at 3.08.09 PM

The memorial is located on Capitol Hill. Donna Joyner told The Washington Times she hopes that lawmakers will see it and be reminded of the cost of war.

Check out this time lapse video of the memorial being erected:

h/t Nation Swell

Meet more heroes. Like us on Facebook.

19
19
0
TOPICS
,
JOIN THE CONVERSATION

When a Little Girl Called My Daughter 'Sad'

371
371
0

Yesterday after our church service, my husband, Wes, and I picked our daughter, Julia, up from Sunday school class, put her in her wheelchair and started down the long hallway back out to the common area.

As we passed the first grade classroom, a little girl waiting in the hallway pointed at Julia and loudly said, “Look at that girl in the wheelchair. That’s SO SAD!”

Before my brain could register what to do, my legs took over, and I walked straight up to that little girl, bent down to look her in the eye and said, “No, no, no she’s not SAD! She’s happy! She’s a very happy girl!”

Wes fabulously followed my lead by rolling Julia up behind me so the little girl could get a closer look. “This is Julia,” he said. “Did you see the cool wheels on her chair? They light up!” The little girl looked at Julia’s wheels as Wes spun Jules around and nodded hesitantly. By this time the little girl’s parents were paying attention, probably wondering why strangers were harassing their daughter. “Oh, they do light up,” her mom said. “How cool!”

I asked the little girl her name. I told her we were so happy to meet her and Julia was happy to meet her!  I also thanked her for noticing Julia and talking to us (that might not have exactly been her intention, but that was my reframe because I do appreciate when people see Julia and acknowledge her). I ended with saying again, “We are so glad to meet you and tell you about our happy, happy girl. She is not sad at all!”

I’m not sure if I made a positive impact on the world with that intervention yesterday or scarred a small child for the rest of her life — I hope the former. It was just one of those moments I couldn’t let pass. I spotted the little girl before she spoke, she was staring at Julia, and I could tell she was going to say something. When she pointed her finger at Julia and said, “Look at that girl in the wheelchair” I just figured I would smile and wave, but when she added the “That’s SO SAD” part I was completely taken aback. It’s just not accurate. And I couldn’t leave it uncorrected.

I don’t in any way blame this little first grader for saying what she said — she clearly has been taught from someone in her life, maybe even with good intention, that being in a wheelchair is sad, or being different is sad and that pity is the right emotion to feel when you see someone like Julia.

But nothing could be further from the truth.

Julia isn’t sad. Julia doesn’t make us sad. Nothing about our lives with Julia is sad. She is a joy!

We don’t want her to be different. We don’t wish for a different version of her. We want her, exactly as she is, wheelchair and all! IMG_0184 (1) We celebrate Julia! And she celebrates life to the fullest! She embraces the moment like no one I know! She is joyful, she is silly, she is spunky, she is busy. There is no room for sad in all that amazingness!

The message that people with special needs are sad has to be corrected, not only because it is wrong but because it perpetuates isolation and bias. When we think something is sad, we stay away. When we pity someone we are actually thinking of ourselves as better than that person. Pity and sadness are barriers to being curious, being interested, being involved and being changed.

Please don’t pity Julia. Admire her! And get to know her. You won’t be sad you did.

This post originally appeared on I’m Julia’s Mom.

371
371
0
TOPICS
JOIN THE CONVERSATION

4 Hopes I Have for My Special Needs Child

440
440
1

Zoe just turned 11! And after these eleven years of mothering her, I know better now what I want for my daughter.

1. Acceptance. Open your eyes. I want others to accept my child for who she is, to look close and see her goodness. At first glance you might miss her amazing sense of humor, the way she can make you laugh or the positive light she radiates, and really… that is your loss. My child greets everyone she sees with “Hello” and tells each person she meets — store clerks included — “Goodbye.” She has taught me how meaningful this simple gesture is — because what she is really saying is, “I see you.” Zoe knows that when people look at  her, they first often see her equipment. She has accepted that kids stare (a lot) — but seeing the person behind the wheelchair is important. Acceptance starts with a simple and meaningful “Hello.”

2. Inspiration. Open your heart. Yep, kinda crazy I know, but I want you to let Zoe inspire you. If you are open to the possibility that people with disabilities can inspire you — that they have gifts to give —  then you will see the true person they really are. My daughter can warm your heart with her laughter. She smiles all the time and appreciates everything you do for her. And her hugs? They have the power to heal you. All gifts I don’t deserve, yet gratefully accept each day. Everything she does takes more effort and strength she does not have. She wakes up each day tired, yet her spirit constantly fuels her weakened body. She embraces life, and just when you think that life is kinda crappy, spending some time with my daughter will change your mind. Trust me.

3. Community. Open your arms. Everybody needs their peeps, whether it’s the people in your neighborhood, your school or your church — my daughter does too. Did you know that when you or your child stop and say hi to my daughter because you know her from school or the neighborhood that you are part of her community? Her community is much smaller than yours and mine, and a sense of belonging is important — don’t forget it is meaningful to her too.

4. Do right by her. Open your mind. My child deserves it. And you know what this means, don’t you? Do the right thing. Be fair and be caring. Imagine walking that mile in her shoes. And if you are fortunate enough to be in the power position to make decisions that will improve her life, don’t just do politics — do right. I don’t want others to feel sorry for my child, but sometimes because people don’t know any better. I have to spell things out for them. I have to explain why it’s wrong to use the accessible parking spots, or how preventing Zoe from physically stressing her body will literally help her live longer, or how children with disabilities deserve to be treated with dignity, or sadly, what her educational rights are because others don’t interpret the law the way it was intended.

In our everyday life, Zoe thanks me for each little thing I do, so often, that I tell her all the time not to — that I am just loving her, being her mom.

But for all of these things I wish, for all of these things she deserves, I know Zoe will thank you for them too. Even though she doesn’t have to.

This post originally appeared on SpecialNeedsMom.com.

Meet more Mighty moms. Like us on Facebook.

440
440
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.