***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.