dark hours

I hit a big freaking wall yesterday. It wasn’t a slight fender-bender. No. It was a full-contact, crash-test-dummy-ejecting fiasco. For half a second as I was flying through the air, I felt a brief embodiment of joy as the last bit of my sanity was stripped away from my soul – which in my mind sounded like velcro being pulled apart – as I embraced the thought that impact was coming soon and would put me out of my misery.

Of course, all this really means is that I cried really hard for a really long time. In fact, I cried so hard that I fell asleep really early, which is why I’m awake and writing this at 3:10 am.

These early morning hours are the hardest. I just lay here thinking of all the things that are not going as planned, which is darn near everything. He’s asleep in his room after making it through another day of being my quietly brave boy. Without making too much noise, I go and check on him while he’s asleep. He can’t protest my making a big deal over him if he’s not aware that I’m doing it. I find that beautiful pulse on his wrist as I gently hold his still hand, willing my heart to beat in time with his. Feeling the connection. Committing to memory. And wondering…

How long?

Being mad with myself for thinking that way even though people are talking that way. Make the most of it, Sarah. Make it magical.

That’s a tremendous amount of pressure. Especially when I’m flying through the air waiting to land in a world where my son doesn’t live. And I’m left with the memory, fearful that my mind won’t remember just how it is. How beautiful. How amazing. How powerful he truly is and what a blessing he is to just about everyone on this planet.

I’m grieving. I feel guilty about that because he’s still here. But I can’t keep up. It’s like I’m at school, taking notes for a test. Wait! I missed that last bit! Can you repeat it? Will it be on the test? What if I forget?

What if I fail?

And opening up my inner-most self here to everyone. Anonymous readers. Most wonderfully supportive. Some anxious to be critical. Others wanting to convince me that “he’ll be in a better place.” Telling me things I don’t want to hear. Like a piece of mail I know contains terrible news and simply refusing to open it in hopes that it will go away.

But these are the dark hours. It won’t last for long. My fit of exhaustion will finally win and give me respite for a while, recharging enough to get through another day.

And somehow finding the strength to make it through.

 

Making headlines

I do spend a lot of time on the computer, so I’m no stranger to the trending sensation of sensationalism. I just saw a headline a few minutes ago that said, “What the mechanic did to this woman’s car left her in tears.” Well, we’re expecting some horrible story about how this evil mechanic left the oil cap off, which caused her engine to blow… but not before she realized that the mechanic had also stolen her Yankee Candle air freshener AND scraped off her bumper sticker advertising the high intelligence level of her child. But this is not the story at all. She was broke, needed her car to get to work, and the mechanic helped her out. They tricked us! We were expecting some downright evil sh*t but got a happy story instead.

What is wrong with us? Why do we respond to horrible things? It seems that there’s a piece of us that wants failure to reign so we can “SMH” (shake my head for those of you still learning today’s popular abbreviations.) Instead of following these misleading headlines, you should simply follow Ben’s page. It’s heartbreaking enough to satisfy all your demented needs. 😉 Oh, stop SMH at me… I am adding a little drama to spice things up. It’s what you crave, right?

If you’re new to our world, you should know that I exist solely on the love of my children, doing yoga, writing, potato chips, and a completely warped sense of humor. Oh, and a handful of meds for a variety of inadequacies I’ve been genetically and emotionally exposed to. If I couldn’t inject humor into this crap hand we’ve been dealt, well, I do believe I would have jumped off something very tall by now.

At some point, you just gotta laugh.

I recently made plans to take Maddy to Los Angeles. One of our conjoined bucket list items was to go to the “Dia de los Muertos” festival at the Hollywood Forever cemetery. We’re both creepy kids and LA has quite a lot of creepy things to do, especially around Halloween. So, since it was my daughter’s fall break, I wanted to do something with – and for – just her. She’s been so patient for the entirety of her life, playing an important – but rarely glamorous – role in being the younger sister of a critically ill kid. She deserved this trip. So, I planned. My dear friend, Melissa, set us up with her MIL, Astrid, who gave us a beautiful place to stay AND a car to use. There would be tickets to attractions so our trip would be jammed with fun stuff to do. All we had to do was get there, and flights worked out to be extremely reasonable. I booked it. Maddy was thrilled and immediately started a countdown calendar for the trip.

Then, a couple of weeks before we were due to leave, we got the news that Ben had relapsed. This would be his fifth fricking time fighting neuroblastoma. As we discussed options with his team, they kept talking about that week – our fall break – as when he’d probably be suffering the fallout from chemo. Sh*t. As we were mulling over the options, Matt and I discussed canceling that trip. I knew it would break Maddy’s heart, but I thought it would be best.

Before I could discuss it with Mad, she went to Ben on her own and said, “Mom and I don’t have to go out of town. We can cancel it if you’d like us to stay here with you.” My eyes welled with tears as I heard her offer up the one thing she had to look forward to in order to care for her brother. Then Ben said, “I’d be disappointed if you didn’t go, Madeline. You deserve this trip.” I had to walk away, mostly because I knew the kids were tired of seeing me cry.

Ben was throwing up the day we left for LA. He had developed a horrible and painful rash all over his body. It was tough to leave, but knew he was in capable hands with his father. While we kept in constant contact with Ben, Mad and I had a ridiculously good time. She repeatedly thanked me throughout the trip, often exclaiming that she was having the best time ever! It was a priceless experience for us, and gave us some much needed time together.

Ben was admitted to the hospital the day before we returned. That last day was challenging to keep our mind on vacation, but I reminded Madeline that Ben wanted her to have a good time. So we did. And when we returned to Denver, our first mission was to rush to Ben’s bedside. The rash was gone and his hair was starting to fall out. I felt the familiar tightness in the back of my throat when one of those pesky panic attacks comes to visit. No, the cancer and the sadness of our situation had not disappeared, but the trip had offered me a much needed respite. And that’s ok.

A few have questioned how I could leave Ben at such a time. Don’t worry, I get inappropriate messages from people all the time. Everyone has an opinion on how I should do things, but I’ve realized that my opinion is the only one that matters. So go ahead and judge. I don’t need to make up a headline like “Mother leaves cancer-stricken son behind to frolic in LA.” I needed to give this gift to my daughter. I needed to take this moment for myself. I wouldn’t change it for the world because we had SO MUCH FUN, PLUS we had Ben’s blessing.

So, for those who are SMH at us for trying to make a happy story out of a sad headline, please find another story to follow. I think we’ll be okay without you. But for those who truly love us and are following our story to offer support, this “Mother is grateful to people rallying around cancer-stricken son and family.”

Succinct. To the point. Truthful.

The end.