What I Wish Others Understood About Almost Losing a Child

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Most people dread looking at the back of the fridge, fearful of seeing some lost piece of deflated mystery food. I hate looking in the back of my fridge because sitting there is a tiny bottle of morphine. Our hospice kept it at our house to help my daughter pass away peacefully. My daughter, by some miracle, grace of God or luck, is still alive and kicking. And boy, does she kick hard! But that little villainous bottle still sits there, tucked away, as a grim reminder of how close we came. I avoid venturing too deep in the fridge for fear of seeing it accidentally. All those emotions, pain and uncertainties come rushing back the moment I lay eyes on that small prescription bottle hiding in the shadows.

My daughter graduated hospice care in March of this year. When all this started, her doctors told us to “enjoy each moment” and “treasure every memory.” Code for: “Your child is going to die.” While we did and still cherish every moment we have with our daughter, we’ve reached a level of normal. Well, our normal anyway. God, do I love our normal. I wanted normal more than anything on Earth. The routine of bedtime stories, baths and toys has replaced monitors, oxygen and daily labs. At least for now.

When you almost lose a child, you never forget that feeling. People expect you to get over it because he or she is “better now,” but a small part of you will always be stuck at the bedside of your dying child. You will always play the “what-if” and “could-have-been” games in your head. You feel cheated and angry at times, sad at others.

It’s important people understand this: Not everything is fine just because your child is doing better. There is so much grieving that happens when you have a child with a life-long disorder and that doesn’t just go away. It may get routine, it may get more bearable and it may become (your) normal, but it doesn’t get easier.

Despite this, we have to keep going forward, even if we know the future may not be everything we expected. In the midst of those scariest moments, I didn’t think we would be where we are today. I have no idea what the future will bring and that is OK. We’ll roll with the punches.

I’m getting rid of that little bottle in the back of the fridge. I need to let it go. I need it gone. We all have our own reminders of those uncertain times. I hope many of you can clean your fridges out too, when you’re ready.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.

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The Most Heartbreaking Decision a Parent Could Make

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On November 5, 2013, one little embryo was transferred via IVF to Heather Bramham. It was a success, and Asha was born. Abby and Alex were the proudest siblings a little girl could have.

But on November 5, 2014, a year to the day she was placed in her mother’s womb, Asha Bramham grew her angel wings while in her parents’ arms at Royal Children’s Hospital in Brisbane. She was 20 weeks old.

This is a story of biliary atresia, and the impact on one family. Biliary atresia is congenital (present before birth) and affects one out of every 15,000 to 20,000 infants across the world every year. It’s a life-threatening condition in infants, where the bile ducts inside or outside of the liver become blocked, trapping bile in the liver.

As well as biliary atresia, Asha had other contributing factors to her health issues. An additional 21st chromosome attached to one in five of her cells (Mosaic Trisomy 21), partial situs inversus (some organs not on the sides they typically present on), and a congenital heart condition.

Liver disease has a devastating affect on a child and the family, and early intervention is crucial. Some symptoms are pale stools, jaundice and enlarged liver. There is no cure for biliary atresia, but there is an operation called the Kasai procedure. For optimal outcomes (an 80 percent partial or complete success rate), the Kasai procedure needs to take place in the first three months of the baby’s life; a liver transplant is also an option. Asha’s liver issues were identified late, and the Kasai procedure was performed at 100 days old. In just 100 days, Asha already had fibrosis of the liver.

The Bramhams’ last day together as a family outside of hospital was September 23, the week before her Kasai procedure.

This hospitalization would be Asha’s last.

Rob says, “We knew we had a special little girl on board and we wanted a special name to suit her. We chose Asha Haylyn. Asha means ‘wish, hope and life’ and Haylyn means ‘unique.’ It suited her to a tee. We just didn’t know exactly how unique she was at that time.”

The weeks wore on, as the Bramhams juggled the responsibilities of working and two children at home. Life did not stop moving, even with a baby critically ill in hospital. While the Kasai procedure she had initially had surgery for was successful, she had picked up hospital infections, which put her on life support. One day in November, three weeks into life support and six weeks after she arrived in the ICU unit of The Royal Childrens Hospital, they had a meeting with their medical team.

Heather says, “We were told that we may have to make a decision to let her go in a few days, as treatment wasn’t working. That evening, Rob and I went down the road to get dinner. We came back to find that she had rapidly declined since we left, really struggling to breathe and gasping. Her carbon dioxide levels were back up to 200. Her body was in shutdown mode due to the septicemia.

“We made the heartbreaking decision to intervene and cease further medical treatment.  For the first time in three weeks, we were able to cuddle her briefly, prior to the doctors removing her life support. She passed away peacefully in our arms. Our little girl was too unique — even for the doctors.”

More recently Heather wrote:

“It’s been an emotional, exhausting and extremely long 20 weeks since we said our goodbyes to this beautiful little girl of ours when she was a mere 20 weeks old.

“In Asha’s last few weeks, her hair had started to thicken up. I often wonder how it would be now, how thick it would be, how long it would be, if it would still be straight or if it would have a curl to it like big sister Abby’s did. In Asha’s last few weeks, her eyes had started to change colour but we never really saw them as she was on life support for those last 3 weeks. We only noticed when the nurses checked her. I often wonder if they would still be the greeny colour they were at the end, or if she’d have big dark brown eyes like Abby and Alex do.

“I often wonder what her true smile would look like, we weren’t lucky enough to see one.

“I often wonder what her laugh would sound like, if she’d be rolling or sitting up now, how much she’d weigh, what her little face would look like. My heart constantly aches for her.

“My baby girl.”

Asha’s parents have made her story public to help support other families. They fundraise for Liver Kids Australia to help raise awareness and resources. You can make a donation to Liver Kids Australia in Asha’s memory here.

Asha’s father, Rob, has said:

“Please, everybody share this article. We want people to be aware of the symptoms for biliary atresia. We want other parents to look out for this hideous disease.

“It is an awful feeling to lose your own baby. I don’t want others to endure this heartache.

“I will never get to cuddle my little girl. I don’t want another parent to be robbed of that privilege.

“Please share.”

You can view the warning signs for Biliary atresia here.

This post originally appeared on Parker Myles.

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Choosing to Love Someone You Might Lose Isn’t Easy

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It’s a frightening thing, loving someone you could lose.

When I first heard the diagnosis I sat in my hospital bed, the same bed in which he was delivered only hours before. A doctor from a hospital half an hour away called for me, and as he spoke over the crackled line I scrawled the words “total anomalous pulmonary venous return” on a hospital room service menu.

After a textbook delivery, my baby was whisked away as a team worked for hours to stabilize him before and rushing him off to another hospital. I was told to say my goodbyes as his incubator was pushed to the ambulance. He would be Life-Flighted for an emergency open heart surgery just hours later. I was told they would try everything they could, but his condition was severe.

Within hours, every dream and every plan I had made up to that point lay in ruins around me. Part of me felt a very visceral reaction, like I wanted to stand up and scream out, “Somebody save my baby!”

The other part of me, well, just felt numb.

Fast forward to later. He made it through his surgery, but the surgeon was not hopeful he would recover. I stood in the dark and quiet that night, after heading back to my sleep room. I was faced with a choice. Should I distance myself from him and protect my own heart? Or should I ensure that no matter how long his life, he would never, ever be lacking for love?

I chose the latter. I couldn’t not chose it.

And I got to give him that love for nearly seven months. And now, even though he’s no longer here, I continue to give it to him every day.

I learned when we choose to love these children with fragile bodies, it’s always worth it.

We learn to take the next step by their side, promising loyalty and love to them no matter where the path may lead. We spend sleepless nights curled up in plastic hospital recliners, monitors beeping, and adrenaline pumping so that we are ready to jump up at a moment’s notice. We run on will power, faith, and a touch of insanity as we fight for their lives, as we advocate and as we learn them like the back of our hand.

We live for their smiles, their snuggles, even just a glance of their eyes our way, something that will tell us they know — they know they are loved, and they know to whom they belong. We lay our hearts and our lives down in the name of sacrificing it all for them, and we carry them for as long as we are able, whether we are blessed with decades or whether we never hold them with breath in their lungs.

And they deserve every single ounce of strength, of love, of faith, of hope, of fight that we pour out. They deserve all of our heart, because these perfect, special, fragile children give us nothing less than everything they have.

It’s a painful thing losing someone you love. It wrecks you at your very core. It shatters you, as they take a piece of your heart with them as they go. It is earth-shaking and dream-crushing and horrible in every way imaginable.

But it is worth every single second. Every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, “I love you, too.” They are worth it all.

Take it from me.

Choose the harder path. Love until you feel like your heart has given all it has, and then give a little more.

It’s a frightening thing, loving someone you could lose, but it will always be worth it. Our children are always worth it.

A version of this originally appeared on Scribbles and Crumbs

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The Questions I Still Have 11 Years After My Daughter Passed Away

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12 years old.

I have so many questions, wonders and thoughts.

Would your hair be thin like mine or would you have hair more like your Dad, rich, thick and a beautiful brown. I’m so jealous of that man’s hair.

I wonder if those gorgeous blue eyes still have the power to look into someone’s soul.

Would you be short like me?

Would your nose be a little crooked like mine?

You would be in middle school now. Would we fuss and fight like so many mothers and daughters?

Your Grandma could always make you laugh and smile. I would love to see the bond you all would have today.

What is heaven like? Were you excited when your Poppy showed up three years later? I know you two are having a blast.

I’ve missed you for so many years now, Lexi.This year I especially miss you. I wish you were here to play with Drake. I know he would adore you. I feel like Drake would be talking by now if he had you here to chat with him, walk with him outside, pull him in the wagon, walk over to Pop’s house. You could take him into the pool and whirl him around… I can see his smile, and yours. He would probably worry you to death.

I wish you were here to fuss at him and yell for me to tell him to leave you alone. I wish I could hear your door slam because you are upset with me for letting him get by with things. I wish so many things. I long for you.

On this day 12 years ago, I held you in my arms for the first time and felt such overwhelming joy. You were perfect.

Less than one year later, I held you in my arms again as your heart beat for the last time. Even then, you were perfect. When Jesus took you from my arms I felt it. I literally felt Him lift you from my arms. I have never felt such peace and heartache simultaneously.

You were mine for almost 10 months and although we have been apart for 11 years, there isn’t a day that goes by without you in my thoughts.

12 years is a long time. It took several years for your Daddy and I to even consider having another child. We surrounded ourselves with friends and family for several years. I went back to college to become a teacher and somehow… life went on. I made myself so busy that the years flew by. A few short years ago I knew we needed to make a decision about another child. We were in our mid-thirties and it was time to make a decision. Many people may think to themselves ( I’m sure they do), those poor people, they lost their first child to Congenital Heart Disease and when they finally decide to have another child… he has autism. How sad.

Not hardly.

I honestly cannot imagine life without Drake. Autism is hard. Understanding autism is harder. Getting Drake to and from therapy is hard. It is hard to work outside the home when you’re a special needs parent.

But… losing you, Lexi, was harder. Autism I can handle, living this life with a part of my heart missing, that is hard stuff.

Drake may not speak yet, but at least he is here to give me hugs.

Drake may not give me good eye contact… heck, he doesn’t even have my blue eyes, but when he does look at me I can see you so clearly sometimes.

Drake may have autism, but in some small way you live through him, Lexi.

When Drake laughs I often think of the few times we heard you laugh. You suffered so much during your short stay on Earth, but when you did laugh it was a beautiful sound.

When Drake wrinkles his brow and gives me that “look,” I can’t help but chuckle. You looked at people so hard, Lexi. It seems I marked both of my sweet children with the dreaded “look.”

Much like you Lexi, Drake loves to take a bath. Taking a bath was one of the few times you were content. Drake’s love of water reminds me of you.

I so wish you were here with us to enjoy every little milestone Drake accomplishes that so many parents don’t get to enjoy. For some reason I know you would understand and celebrate Drake because of your own struggles.

It is so easy for me to be selfish and wish you were still here with us. In reality, as your Mother, I know you are in far better hands where you are. I’m thankful for the peace I feel when I let my mind rest on this knowledge. I love you baby girl and I miss you desperately, but I’m so thankful for this little fellow Drake. I know without a doubt God gave him such a sweet spirit to comfort me.

12 years. I still can’t believe you are gone, but I cannot wait until we meet again. Happy birthday, baby.

Love,
Mama

This post originally appeared on Walking With Drake.

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The Realization I Had the Moment My First Son Died

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The moment that changed the way I thought about disability and disease was when my first son died.

Porter had many struggles in his short 7 years on earth. He was born with a rare chromosomal abnormality, which came with low vision and heart problems. Porter had open heart surgery at age 2 and then need another procedure at age 7.

I spent much of Porter’s 7 years trying to fix things for him and trying to make things easier. We attended many therapy sessions after school. When Porter was 6, his brother, Emerson, was born. I have very few photos of both my boys together.


Emerson was also born with the same chromosomal abnormality Porter had. Luckily, Emerson had full vision and a healthy heart. He does experience many of the developmental delays and is nonverbal like his brother, Porter.

I only had both my boys together for five short months. We lost Porter on February 24, 2006 during a heart procedure. That was the moment that changed the way I thought about our sons’ disability. That was the moment I realized what was really important.

It did not matter how many therapies we attended or how many skills were achieved. That very moment, I realized that “now” is really all we can count on. The “present” is where we should live and be thankful for every single moment we are given here with our beautiful family.

It’s not always easy to do, and there are some days when the present moment is difficult or unhappy. We now spend more time playing and outside than we do at therapy. I have come to realize the real gift that I have been given.

There is no need to fix things for my son. He’s just fine!

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Mother Turned Her Painful Experience Into a Way to Help Grieving Families

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When Cheryl Haggard’s newborn son, Maddux, was 6 days old, his parents had to make the difficult decision to take him off life support. Maddux was born with myotubular myopathy.

Haggard and her husband, Mike, choose to have their few remaining moments with their son captured by a photographer named Sandy Puc’, who took photos of little Maddux while he was still on life support and then again when he was off the machines so his parents could hold him.

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Cheryl Haggard and Maddux Achilles Haggard. Photos by Sandy Puc’.

A month later, Haggard and Puc’ began working on an idea that would become a nonprofit organization called Now I Lay Me Down To Sleep.

“I wanted to share my story with other families and let them know that it was OK to create these memories after their babies died,” Haggard told The Mighty.

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Cheryl Haggard and Maddux Achilles Haggard. Photos by Sandy Puc’.

Now I Lay Me Down To Sleep works to connect volunteer photographers with grieving families to create beautiful remembrance portraits of infants who died at birth or will not survive long afterwards.

For Haggard, these portraits are an important step in the healing process, honoring the memory of the child and assisting in preserving his or her legacy.

“I know there’s nothing we can do to change or stop what’s happening,” Haggard told The Mighty. “Their baby will die, but you can help how that family will heal in the months and years following.”

The organization  trains, coordinates and mobilizes the photographers. After the shoot, it offers a disc of images to the grieving family, completely free of charge.

“The families do not pay for anything,” Haggard told The Mighty. “I never wanted a family to feel like they could not afford to create these memories.”

Since the nonprofit’s birth in April 2005, Now I Lay Me Down To Sleep photographers have photographed more than 30,000 families in the United States and in 40 different countries around the world.

“Since the moment I was pregnant I had hopes and dreams for that baby and I loved him,” Haggard told The Mighty. “The memories don’t go away — we will never forget. But photographing them helps to validate their tiny lives.”

Look some of Now I Lay Me Down To Sleep’s work in the portraits below: 

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Baby Logan Bostrom photographed by Julie Williams.
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Baby Logan Bostrom photographed by Julie Williams.
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Baby Logan Bostrom photographed by Julie Williams.
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Baby Natalie Sage Romanski photographed by Cliff Lawson.
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Baby Natalie Sage Romanski photographed by Cliff Lawson.

“I like to think that in 100 years somebody will pick up that photograph of Maddux, and they’ll ask his name and wonder about who he was. In that way, his memory will live on,” Haggard told The Mighty. “They’ll know he was a person.”

Learn more about the nonprofit in the video below: 

For more information about Now I Lay Me Down To Sleep, to volunteer your services as a photographer or to make a donation, please visit the site. You can also keep up with NILMDTS by following them on Facebook and Twitter.

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