I’ve entered a new dimension where I feel like a million life-altering things have happened but I can’t remember any of it and I think it’s still 2004 and somewhere along the way I was riding a unicorn. It all seems like a bad – yet oddly comforting – dream. Or perhaps I’m just hallucinating due to all the stress. I truly need to write daily so I can keep on top of all the weird stuff that happens. As it stands, I’m barely keeping up.
Two weeks of life have vanished while watching Ben battle neutropenia and pneumonia. We were stuck in the hospital for two weeks. This certainly isn’t the longest we’ve been inpatient, but I wasn’t expecting such a lengthy stay. And the kicker is that Ben’s 12th birthday just happened to coincide with this overdrawn visit. Out of all the days that cancer could potentially ruin, it just wasn’t satisfied until it held him hostage on the coolest day of the year. Granted, I’ve had to make due on holidays before. In 2009, he lost Halloween, Thanksgiving AND Christmas. I bought a miniature Christmas tree for his room and decorated his IV pole with colorful lights and garland to make the best of Christmas. He was so doped up though, that he didn’t remember it. In 2010, he spent his 9th birthday in NYC undergoing radiation therapy. But at least he was well enough to be out and about in the big city and have a party at the Ronald McDonald House after his treatment was finished. Cancer is a big ding-dong for trying to ruin so many important pieces of Ben’s childhood.
It wasn’t all horrible this time, though. My dad came from Ohio. My sister and nephew came from Pennsylvania at the last minute for a surprise visit. And Ben had lots of visitors – from Wapiyapi peeps, to the wonderful school teachers from Canyon Creek, to the awesome ladies who hooked Ben up with his hearing aids… it’s clear that many people care for Ben. And, oh! The cards that Jackie Sharp collected… I tried to count and I believe that in addition to what she collected and what was mailed directly to me, there were around 400 cards. I taped some of them up in his room. So many wonderful sentiments from so many people (and even some stars of the Country music scene sent Ben their well wishes!) One of Ben’s biggest supporters, Joyce Webster, made sure Ben had a super awesome Superman cake since I didn’t have time to make one myself. I think that despite the circumstances, Ben had a pretty good day. Seriously, his cousin, Anthony, was probably the best gift. They had a blast together.
But here’s where I have to complain: I went down to the cafeteria for about 15 minutes to get Madeline some lunch. As I was coming back upstairs, the doctors and nurses were all standing around Ben’s room clapping. Then they dispersed. In the 15 freaking minutes that I was gone, they came and sang happy birthday to Ben. I was heartbroken that I missed it. If any of you have ever spent any time in the hospital, you know that the doctors always do their rounds at the most inconvenient time for you. You’ve gotta run to the bathroom, or you’ve just taken off the top that recently got puked on (and they don’t knock), or you’re starving… but you know the minute you leave they’ll show up. And that’s what happened this time, too. I pouted for a good 20 minutes, left the room for a few to call my girlfriend so I could cry my eyes out. Silly, I know. But with everything that’s been less than satisfactory lately, the last thing I needed was to miss a bunch of doctors and nurses singing off-key to my newly minted 12-year-old.
Not to mention that I have other stressors occurring. My thyroid is all out of whack so my hormones are unhappy. My sleep is suffering. Certain people have made me really, really angry. I missed Peter Frampton in Columbus on June 20 (bought a ticket when I thought we’d be in Ohio over Ben’s birthday.) And my beautiful daughter is having some major self-esteem issues. It IS often times more than I can handle. I’m constantly putting things on the back burner. And, for the first time in ages, Peter Frampton will just have to take a back seat. I’m going to see him in August anyway. At least, as long as cancer doesn’t ruin that concert, too.
Yesterday morning, I woke up after having a sleepover with my sister. I don’t know that we’ve ever truly done that in our lives. We’re six-and-a-half years apart and I’ve always been that pesky little sister. I wouldn’t say that we have a tremendous amount in common – she’s always seemed like an adult where I live as a chronic adolescent. Anyway, we watched tv together and laughed with each other as we sighed with relief from being out of the hospital. The kids were playing well together in the next room so we had some time to just be sisters. It was really nice. Anyway, the next morning when I woke up, we started chatting and I moved closer to give her a hug. As soon as her arm slid around my shoulders I started to cry. She was actually in mid-sentence when she realized that I was doing that freaky silent sobbing shake. I couldn’t control it. For the first time in a long time I felt like I was safe. I could cry and it would be okay. All the other times I’ve cried it hasn’t been okay. I don’t know how I came up with the categories of okay to cry versus not okay to cry, but at last I felt like I could finally break down. I think at first she was taken off guard, like, “Oh, shit. What do I do now?” But she performed perfectly. She said quietly, “I’m sorry you’ve had to be so strong for so long.” She rubbed my back for at least 15 minutes, not saying anything else. And when my sinuses couldn’t take any more, I stopped. And I felt better.
Sometimes I’m ashamed of who I am. I KNOW I’m an excellent mother but I often feel like I’ve failed in every other aspect of my life. I haven’t been a good sister. Or a good daughter. I’ve failed twice at being a wife. I’m highly educated but I’m unemployed and broke as hell. It’s not like I’m just some slack-ass sitting around smoking pot, eating Doritos and watching “Arrested Development” on a constant loop. I know that taking care of my son is priority and I’ll proudly continue to do that. But I feel like everyone says, “Oh, crap. Here comes Sarah. What is she going to need this time?” Logically, I understand that it’s a bunch of baloney. But emotionally, I just can’t wrap my mind around the fact that I’m NOT a failure. It does often suck to be me. And I wish it didn’t. Trust me. I’d love something entirely different.
I don’t want a world of cancer. I want to go back to 2004 when my son wasn’t sick. I wish I could have used my degree long enough to pay for it. I want my daughter to understand that she is beautiful just as she is. And I want to be able to take care of myself and my children by my own means.
And I’d really love to ride on that unicorn.
Sigh. So eloquent and heartfelt, yet full of strength and wisdom. I am going to start playing the lottery so I can come give you a big squeeze when I win.
Biggest of Hugs! Love you all!!
You are an amazing friend and mom…we’re all lucky to know you. Your strength is amazing! You and your sweet kids are always in my thoughts and prayers. ❤
Once again you took us to on a journey through your writing. I’m so glad you all had visitors. I’m sorry you missed the drs and nurses singing, I’ll bet it was wonderful. Happy for Ben! Hugs!
Sarah..you are who I want to be when I grow up:) You move through this world with humor and honesty. You have allowed us in on your journey. You are so brave and beautiful. No..you aren’t meant to conform..you shine too bright. I am thankful you are my friend. Failure? That word isn’t even what comes to my heart when I think of you. You are funny, strong, humble, curious, loving, kind, loyal, intelligent..etc. You had me at ..Unicorn!! Beyond grateful that you are in this world!
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