A Life Worth Living…

I am “bad mood mom” right now. I have my eyes closed and my fingers are furiously tapping on my little keyboard here… letting it all come out. What will come out? I don’t know. Reminds me of that George Carlin skit about things left in the refrigerator too long – could be meat, could be cake – it’s totally up in the air.

I am completely floored. My Ben has relapsed. For those of you who have children I’m sure you can recall those early days when it wasn’t difficult to pass hours just gazing into their little faces. I remember just days after he was born I was sitting in a chair holding him on my lap, staring at that sweet little super serious face. His little brow perpetually crinkled in that “what the hell is going on here” expression. Seriously. He was born a wise old man. I’ll post a picture to prove it.

Ben Birthday17See? Anyway, I was holding him, gazing at his amazing little face when that Stevie Wonder song “For Once in My Life” came on the radio.

For once in my life I have someone who needs me. I have someone who loves me. I’m not alone anymore.

These are just snippets of the lyrics. And even though I knew this song well enough to sing along, this time the lyrics just slapped me upside the head. My Ben. Someone who needs me. Someone who loves me. I’m not alone anymore. Ben was my gift. Ben was my first glimpse into the wonderfulness of what “family” was supposed to be. I did not grow up with reasonable family relationships. I had no idea of what “family” was. By the time I was 12 my mom was off pursuing her next husband who didn’t want to marry her until I was 18 because he didn’t want to assume guardianship of me. They were eventually married – one month after I turned 18. My sister was seven years older than me, which wasn’t really conducive to any sort of bonding. My biological father remarried a woman (who ultimately committed suicide when I was 18) and chose to not have anything to do with me. My step-siblings tortured me. One of them on a daily basis – to the point where she was kicked out of the house once her dastardly deeds were discovered. Family. Not my thing. But here I am – a mother – and completely clueless as to how to lovingly raise this child. But I was going to do it. I had the handbook on how NOT to do it, I would just do everything polar opposite of what I’d learned.

I thought I was doing a pretty good job.

So WHY is this beautiful child, who I love with my entire heart, being dangled in front of me? Sometimes I hear what I think is God saying “Here he is… he’s wonderful… but you can’t have him.” WHY AM I BEING THREATENED WITH LOSING HIM AGAIN? I thought we were in the clear. I thought that after that first tortuous treatment protocol he went through that he was going to BEAT this. Do you know how many kids survive relapsed Neuroblastoma? This disease is so awful. When neuroblastoma comes back it’s just saying “HaHa! I’m resistant to treatment and you won’t beat me this time.”

When a child is diagnosed with high risk neuroblastoma the treatment protocol is to throw absolutely every treatment available at these kids. Ben had powerful chemo cocktails, surgeries, bone marrow transplant, radiation, oral chemo and antibody therapy… everything that his little body could take. And he beat it. But now the cancer has learned. It’s stronger. It’ll be harder to beat. And we’re tired. How do we stand up to something that is simply unreasonable? And Ben understands now. When he was first diagnosed he was just a toddler. But now he knows. He understands. How am I supposed to parent that?

What happened to my basic parental right of being able to kiss a boo-boo and make it all better? Cancer screwed me. I already had to overcome adversity in making sure this little man had a fighting chance at life. WHAT DO I DO NOW?

Keep fighting. Keep loving him and letting him know that he saved me. Let him know that he made MY life one worth living. And let him know I’m going to do absolutely everything I can to make sure he gets a chance to live his.

2 thoughts on “A Life Worth Living…”

  1. To answer your question “what do I do now?” You do whatever you have to to one hour at a time and you lean on the people who love you for support. You ask your old college pals to fly to Denver and sit with you in the hospital, you get drunk if you need to, you blog every day, you honor the mother you are by loving your children the best you can every day. You are an awesome Mom and given the role model you had what a miracle you are! Ben can handle this–that old soul! Watch him for how to move throught this with grace–he is your best teacher. I love you, RONNIE

  2. Go ahead, Sarah, rail against the demon as it raises it’s ugly head. I think when you’re in hell you’re allowed to swear and be totally pissed off – it’s just another day at 1,500 degrees above F. We’ll work at bringing the temp down to a more workable degree for you – that’s our “job” – that’s what we do best…helping you keep your cool while the sweat’s puddling all around. Like Ronnie said, you’re only a plane ticket away. Now, go put on some maximum strength deodorant – you’re gonna need it!

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