When Death Comes for Your Child

***Edit: Little Leah passed away early on July 26 with her loving family by her side. Our thoughts are with her family. The world will miss you Leah, but thank you for leaving your mark of happiness, bravery and strength.***

Many a night has been spent by my son’s bedside, just watching him breathe.

All you parents have probably done the same thing. You’ve had a rough day and nothing seems to relax you. Work is crazy, you don’t see your family enough, the bank is sending foreclosure letters…whatever the case may be you feel like the walls are closing in quickly. So you quietly sneak into your kid’s bedroom late at night. You sit on the floor, put your hand on his/her chest and just watch.

Will’s rhythmic breathing never ceases to calm me down and make me smile. Watching his chest rise and fall and the look of complete serenity on his face is the most soothing thing I can think of on this planet. I’ve spent many hours by his bedside gazing adoringly at him and thanking my lucky stars I have him. I’m sure many parents are in the same boat.

But what if you went to your child’s room like usual, opened the door expecting to find a slumbering kid, only to find an empty bed?

What do you do when death comes for your little one?

It’s a question I mercifully have no experience with. But despite how unnatural and incomprehensible the death of a child is, it does happen. It happens everyday all over the world. It’s happening in my world as we speak, as 5-year-old Leah fights a prognosis that…well, it doesn’t look good.

Leah is the daughter of Rhiannon and Peter. I went to middle and high school with Rhiannon,  and my family has bought our groceries from Peter and his family for years. Although we lost contact after high school, we found each other on Facebook and that’s where I learned about Leah. I’ve been following their story—filled with excruciating ups and downs—since March. I wish I could tell you the story is shaping up for a happy ending, but as Peter and Rhiannon have so eloquently written to all of Leah’s supporters, the odds aren’t good. At all.

According to her dad:

“We started a treatment that is currently being used in a study in Austria. Leah has Neoplastic Meningitis. It’s deadly and chances of her survival are slim. Unfortunately that is our brutal reality. Still wish I would wake up from this nightmare.”

I looked up Neoplastic Meningitis on the Internet. I shivered when I read the results. Not that anyone should be trusting completely in information from the Internet, but if it’s any indication she has anywhere from 1-4 months. A fact that doesn’t even compute in my head because it’s so ridiculously incomprehensible.

I’m not a joiner or a do-gooder. Actually, I’m more of a selfish prick. But from the first time I saw Leah’s picture her story has captivated me and pierced me to the core. Perhaps because when you become a parent, you know how precious your kids are and you learn to love on a whole new plane you didn’t even realize existed. You join this unofficial club. And even though I hadn’t met her, it didn’t matter. Because all I had to do was look at Will and imagine what it would be like to have him taken from me. I have a panic attack every time I even consider it.

Unfortunately, when you’re dealing with aggressive brain tumors, there’s not much that can be done from an outsider’s perspective. All I could do was write about Leah, do my best to get them some play in the media to raise money for her treatments and bring them dinner. Although that was probably more of a punishment than assistance because I cooked it myself. Sorry guys.

I was so nervous going over there. But Rhiannon answered the door with the same beautiful and reassuring smile I remembered from high school. I got to meet Peter too, who I immediately identified as a kindred spirit when we started talking about atheism and how no “God” would ever be so cruel as to give an innocent 5-year-old girl such an insidious and deadly disease. Without a word, their son Lukas started playing with Will knocking balloons around the house.

And then there was Leah.

I actually didn’t get to meet her because she was asleep. When I walked into the house the first thing I saw was all the medications. It didn’t seem possible one person could possibly take them all, nevermind a little girl. Leah was curled up on the couch, taking a well-deserved nap. When I walked over to her my heart sank. She was so small and looked incredibly frail. She had lost her hair from the chemo and her thin face belied all the hearty smiles I had seen in so many pictures.

As soon as the tears started welling up I pushed them back down. Because the amazing thing about Peter and Rhiannon is their strength and grace. They have openly shared their ordeal with everyone, displaying class and grace the whole way. It’s been nothing short of astounding. So if they weren’t crying, I sure as shit had no right to get all weepy. Especially right there in their house.

Out in the car afterwards? Well that’s a whole other story.

The thing is, I thought about Leah napping and how they can go over and check on her and sit there and play with her hair. I thought about how I do the same with Will. But as Peter and Rhiannon bravely admit, the odds are they won’t have that option for much longer. Don’t get me wrong, they’re all fighting with everything they have and they’ll never give up. Ever. But they’re also intelligent and realistic. They’ve listened to their doctors and done their homework.

They’re preparing for what seems to be the inevitable. They’re thinking about the unthinkable. They’re unhappily beginning to embrace the notion of walking into that bedroom only to find it empty.

There are no words that can soothe a parent when death comes for your child. I can’t tell them I know how they feel or that it will be OK. It will NEVER be OK. It will be semi-bearable at best one day far from now, but that’s about it. All I can (and will) offer is unconditional support, although I’m at the bottom of a VERY long list of people who love them. And I can tell them how brave they are. How much I respect and admire them all. And how extraordinarily sorry I am for what they’re enduring.

I know everyone is hoping for a miracle, and they should/will hold onto that for as long as possible. But perhaps the only silver lining is no one has to look far for it, because Leah is the miracle.

She may not beat this wretched fucking disease that I hate with a passion, but from my perspective the courage is often in the battle. And the whole Fernandes family has it in spades. Not to mention a 5-year-old has galvanized a community both in person and across the Internet, affecting the lives of people she’ll never meet. That doesn’t make up for never being able to grow up and grow old—not by a long shot—but in my opinion Leah has shown more strength, bravery and backbone in her five years than some people do in a full lifetime.

No matter how this turns out, Leah will never be forgotten. Her character and spirit in the face of adversity will always be remembered. And when I lecture my son about the kind of person he should aim to be, I will tell him about Leah. And Peter, Rhiannon and Lukas.

And I will hope he turns out half as amazing as them.

 

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20 thoughts on “When Death Comes for Your Child

  1. A hard article to read, yet I could not stop. You found the words to share what battles families deal with everyday.
    Leah and her family have a waged a war no family should ever have to wage. They have done it with grace and dignity, but most importantly, a profound love for their daughter. I admire their love and courage. I just wish it was not by having to endure this awful pain, a pain that is every parent’s nightmare.
    Pete, Rhiannon, Leah & Lukas are examples of everyday parents that find amazing strength and touch us all, staying with us forever.
    I agree, Leah will not be forgotten, no matter what the future holds. Holding onto hope with you all………
    Thank you, Aaron, for writing this.

  2. Heartbreaking. Just heartbreaking. Leah and family, this random blog reader of Aaron’s out in CA is thinking of you…

  3. Goddamn. I read this (as I did your previous post) and it’s like… man, I try to absorb it intellectually and emotionally, but instead find myself so overwhelmed and incapable of processing and weighted down by the enormity of what they’re facing… it’s like I can’t even breathe.

    My heart goes out to them in the deepest way.
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  4. Well-written Aaron, four years ago this September my big brother& his wife welcomed my nephew Shane into the world only to have him taken away a month and a half later. In the process of losing him I saw the strength and courage of which I’ve never seen from my brother and his wife and to this day if the wind blows on a hot day such as this I think it is him cooling us all off. Peter, Rhiannon, and Lukas I cannot express the hope I feel for you as Leah battles on just remember once she is gone she will live on in all of our hearts. Again thanks Aaron your a great friend!!

  5. My heart holds the deepest love and admiration for the Fernades family and for Sweet Little Leah, whose strength and ability to be the Angel she is, to bring people from all walks of life together. Leah, may your strength and courage be the Light, to the many your life is touching, to encourage and allow, the grace and dignity to which you have shown, blossom, in the hearts of people who will be forever touched by your life. May God continue to give courage and the ability to find grace with this horrific disease,and May God grant you cont’d Life no matter where your soul fly’s either in this world or the next, may Your Life be the very Spark that creates a fire in the hearts of those of us who can , but only read your story, and be humbled by your strength and courage. God bless you Leah, from now until eternity.

  6. I’ve had so much bad news like this all year. My step brother passed away in April from Leukemiaat age 33. He was my stepmother’s only child. It doesn’t matter how old they are (although when it’s kids, it seems worse). My neighbor’s child (him being a single dad with full custody) is 8 and has bone cancer. He had his leg amputated up to his hip yesterday. The bad news just keeps coming. I feel like there is a pathway of our lives before we are born and things like this change us (hopefully for the better) just knowing the person or situation. I feel like after losing my brother I am a better person, I just wish it didn’t take him losing his life for me to be a better person. Anyway, thinking of little Leah in the days and weeks to come, and who knows, miracles sometimes do happen!

  7. I loved the story….it gave me goosebumps. It is true, every parent fears the possibility that they are actually facing. It seems they are handling it with grace:) When you are going through something, I know you wait til it’s over to let down. You are Mom and Dad…the people she needs to lean on. I hope they don’t have to let down. I continue to pray for them.

  8. Aaron, you have an amazing way with words. I canNOT even imagine what Rhiannon and her family are going through, nevermind poor Leah. My heart breaks for them and we are all praying for a miracle!

  9. If the family is reading this article, the whole town of Norton is praying and standing behind you and Leah.

  10. leah is such an extrodinary girl and having the privelage to meet this little miracle is more than a gift. the fact that a girl with such a bright future may not be able to live it is heartbreaking and at points it is hard to believe anything this tragic can happen. leah may have to leave this world early but the impact she made in her short 5 years of living is more than most make in their whole lives. leah is an angel that was brought onto this earth my thoughts are for peter and rhiannon and lucas but most importantly leah that she knows how much this earth will always love her. and everyday miracles do happen and i dont think anyone deserves one more than this little girl. i dont know what the outcome of this awful situation will be but maybe the hope of the situation is that this little girl changed so many people for the better she gave us all courage and appretiation for our own lives she showed us how to have hope so i hope we all have hope for leah

  11. Aaron,
    That was the most perfect article and it came from the heart, every word. I couldn’t of said it better myself. Five stars Aaron.

  12. That was a perfect article, right from the heart. I think you said what everyone feels but doesn’t know how to put into words. Five Stars Aaron.

  13. Wow. That’s all I can come up with right now. No quirky comment or joke is appropriate. I hope everything works out. Thanks for writing this.

  14. How tremendously unfair. We just, finally, got our Lukas to sleep but after reading this I want to go back upstairs, wake him up, hold him tight as I can, and tell him I love him all for the 20th time tonight.

    I understand, as most parents do, what you mean when you speak of panic attacks at the possibility of your child facing such a fate.

    What an amazingly brave little girl and family.
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  15. I’ve just learned that little Leah lost her battle this morning. My heart aches for her family – Aaron please let them know that they are in the hearts and prayers of so many at this time.

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