four years later…

Dear Mom,

It’s been four years since we surrounded your hospital bed and allowed them to turn off the machines that were keeping you here with us. You had made it very clear that you were ready to leave this earth to go on to your next adventure. I hope you felt us holding your hands before you made your journey, I was trying to send you off with as much love as possible.

While it was difficult for all of us to let you go, I sure hope you’re having a great time in your garden filled with the eternal blooms of spring. I bet with four years under your belt, that garden is really coming into its own. You always had an eye for the future when it came to your garden, so I’m sure it’s a sight to behold. I like to think that you’ve got many cats milling about, curling up with you while you take a nap in the conservatory on the monkey couch I adored so much.

There’s so much to tell you. Ben keeps fighting that insidious disease but is doing well right now. We’re getting ready to travel again for his therapy. He’s doing his best to keep up with school, is quite the little skier, and is still just as serious as when he was born. He’s such a sweet and loving boy, Mom.

As for Madeline, well, you were right about her. She’s destined to be a star on stage and/or screen! She has a beautiful singing voice – just like Aunt Sissy – we just have to work on her shyness. She’ll blossom in her confidence when she’s a bit older, just like you did. Just like I did.

I’m hanging in there, too. The chaos keeps me busy but it’s a life I’m proud to be living. For never wanting to ever have children, I have found that being a mother is what I was meant to do in this life. It’s hard to see myself as an adult when I think about you. I just see a little freckle-faced girl hiding behind your skirt. But here I am, 46 years old, and there are still times that I want your comfort. I doubt that will ever change.

I still want to pick up the phone when something good happens. Or when something bad happens. Or when my sarcasm goes into overdrive and there’s nobody else who would enjoy it like you would. I know there were times that we butted heads more than anything else, but you know it’s because I’m just like you in so many ways. Our tender hearts wounded all too easily.

I do miss you, Mom. The kids miss you, too. Especially Madeline. Her connection to you was probably the most important of her young life. Nothing will ever replace you. For all of us.

But I hope you’re not missing us at all. However, if you want to, I wouldn’t mind a message telling me what you always said: “I love you one million and twelve.”

All my love,



Special place in heaven

“It is with a heavy heart…” “Fly high…” “RIP…” “Gained their angel wings….”

Too many posts have stated things like this lately. So many children have died recently, most of the ones I follow have died from f*cking Neuroblastoma. Sorry (kinda) for the swear. I know I have a lot of anti-swearers who follow this blog. Let me thank you now for your continued support despite my affinity for blue streaks.

Man. At the risk of offending many folks, I’m going to make a confession. I absolutely despise the term that these children gain their “angel wings” or that they will now “RIP” or “fly high.” I’m not sure if it’s because of the heartbreak I feel when another child dies from cancer (or dies period) or I’m just angry in general. I also hate when people say that “they didn’t lose their battle with cancer, they won their battle!” That makes NO sense to me. Are you saying that they won because they get to go to heaven? And if this is the case, why do we even try to save anyone at all? If heaven is the amazing reward we receive, then why is there medicine to try to keep us here at all? Upon diagnosis, shouldn’t we be saying “Hooray! I get to go be with Jesus soon!” and just give up?

Are we that selfish?

I am. I’ll admit it. I want my son to stay here with me. Sure, there are those who believe he’s simply “on loan” from God or whatever, but if this is so, why do we try to save anyone? Why are there doctors and nurses and money spent on research? There’s a major disconnect for me.

All I know is that I want to prolong Ben’s time on earth – with me – for as long as I can. I insist on living like my heaven is NOW. My heaven is here on earth. My son and my daughter and my stupid pets – including my runaway hamster – make up my heaven. I’m not waiting for the white light. I have it now. And anyone who wishes away their time here on earth waiting for Jesus to take them home is missing out on the gift that He’s given us right now. Yes, heaven is for real, because it’s right in front of our stupid faces. Despite the piling up of bills. Despite the dirty laundry. Despite the harshness of life. Why would it exist if we weren’t meant to get something wonderful out of it?

If my son dies based on neuroblastoma or a complication of neuroblastoma, he will have lost his battle with this insidious disease. It doesn’t make sense to me to let this beast off the hook. Some people survive it, but many don’t. Why try to make cancer’s statistics look less threatening? It’s a beast. There is NOT a special place in heaven for cancer.

And this is another phrase that confounds me. Special places in heaven/hell. In reading comments on a post of a recently deceased child, I came across “There’s a special place in Heaven for your child.” Honestly, I sure hope so. When I think of a special place in heaven for one of our dearly departed friends, I think that he’s surrounded with millions of Legos and a stage for him to dance on. But I would think there’s a real estate issue with this heaven place if we’re all meant to have our own special place. Maybe some of us will only get a standard room with no ocean view? Maybe some of us will have to have a work-study job because we just didn’t learn all we were supposed to? I mean, there has to be housekeeping in heaven, right? Maybe people who have a special place in hell are able to do some work release and get bused to Heaven to clean up after all of those donning angel wings. I would think those big wings would hog up a lot of space that could be better used for either more folks or more dance space.

Apparently, I’m not going to Heaven. At least, that’s what I’ve heard from others. So, I’m forced to think about all of the intricacies of what either platform holds. I might have a deluxe suite in hell because I’m so good at being bad. Or, I’ll have a closet in heaven because I just wasn’t good enough. Maybe I’ll qualify for the exchange program if I can find a host family that will let me run all their heavenly errands for them? I can’t imagine what those errands might be. Getting their lyre tuned? Feather replacement for wings? Does heaven employ yoga teachers? Probably not. But I have to wonder who does the menial heaven stuff? I mean, they have wi-fi, right? There’s got to be someone who takes care of that kind of stuff.

Yes, this is what my brain does in an effort to process so much grief. But I don’t see anything fabulous about cancer killing children. And I will spend the rest of my life – until I take up residence in my deluxe suite in hell shoveling Satan’s sh*t – trying to shovel the sh*t that cancer doles out to these precious children.

And as for my precious child who is battling a very real demon hell bent on taking him away from me, his special place is in my arms. Loving him. Supporting him. Encouraging him to keep fighting.

And finding heaven in the midst of our very real hell.