Dear Beau, on the day of your port removal,

Dear Beau,

Last night you scored the winning run of your baseball game. I cried hot tears as you ran across home plate and into the dugout where your teammates crowded around you, everyone estatic. You struck out earlier in the game and were so down on yourself. The game had been a nail biter and you kept saying to me between innings, “If I hadn’t struck out, we’d be ahead.”

Before the game you were in such a funk. At first I thought it was because I had told you to turn of your iPad and find your cleats, but when I found you in the garage you were throwing your socks around and grumbling about what terrible luck you had and I wondered if it was something more.

“Beau….” I waited for you to look at me,” Bubba, what’s going on because just because you have on the wrong socks doesn’t mean you have terrible luck. So… I am just wondering if something is up?”

You brushed it off, found the correct socks and finished getting ready.

You’ve been talking a lot about bad luck lately. The other night before bed, you mentioned that you had terrible luck and a terrible life. It caught me off guard because we had had a great day. When I asked you what made your life terrible you said, “I’m the only kid I know with Leukemia who isn’t dead, so… yeah…” It was a hyperbole, but I wasn’t going to start listing off living kids’ names. You are trying to figure out what this all means, and I get it.

I am too Beau, trying to figure out what this all means.

When we asked you last month if you wanted to attend Sweet Emily’s memorial service with us the first thing you asked about was if there would be good food. I thought I almost had you convinced to come when I assured you a Southern Baptist memorial in Mississippi would be, without a doubt, a feast. But no sooner than I’d described the casserole buffet you said, “I don’t think I should come, I think it’s a bad omen.” I tried as gently as I could to tell you that Emily’s story isn’t your story, but damn Beau, sometimes I wonder the same thing. You decided not to come, the reason you gave was, “I don’t like seeing people sad.”

I was crying as we waited to take-off on our flight to Mississippi. It all felt like a lot when Emily died, Beau. Daddy asked me if I’d seen your play at catcher the night before in your game. I had missed it, so he re-told to me how you’d hopped out from behind the plate, fielding a poorly hit ball, and fired it to first for the out. His eyes got glossy as he told me about it and I just let the tears fall. He said, “It was so good. Not because he is my son, like it was an amazing play and…. well, yeah… we are just really lucky.”

Every time I see you play a sport I feel tenderized Bubba, but there is something about baseball that really does me in. I think it has something to do with the glove. We went to the Rockies game this weekend and Ryan McMahon was playing. I remembered the day he came to visit the hospital and how you lit up. You were sick Beau, like really sick, and I hadn’t been able to get you to do much of anything the whole day. But those Rockies walked in, Wolters and McMahon, and it was like you were…. well… you.

Last night you were playing first base and shouted before the pitch, “Plays at one! Check home! Rat-a-tat-tat!” I have no idea what that last part meant, but no sooner than you said it I saw a little smirk on your face and I honestly thought I may explode.

How lucky we are to be alive right now, Beau.

The night of Emily’s funeral her parents gave us their season tickets to the Mississippi State baseball game. It felt insane to attend, given the circumstances, but also like there was no other way. The last time we had seen Emily, State was playing in the College World Series. You and Emily sat on the couch of their AKA apartment in Philly and watched as they cleared the field for a rain delay and you were both disappointed. Emily’s family had taught us so much about State and the way of life that is being a State fan. When I called and told you about the game the next morning, you asked if you should play for State when you go to college on baseball scholarship. I told you, “absolutely.” Hail State.

In 15 minutes I am going to wake you up and we are going to head to the hospital where you are going to have your port taken out. It’s hard for me to explain what this means for me, but I wonder what it means for you? When I asked you a couple weeks ago if you wanted to have your port taken out you replied, “Yeah, I guess, but I am just wondering if it is bad luck? Like, I am thinking if I take my port out then I will relapse again.” I made sure you understood the actual science of it, that that is not how it works, but quickly realized you weren’t thinking scientifically. You are wondering what it is that sets our future into motion, and if there is even one bit of agency in our decisions.

I am wondering that too, Beau.

Every time the scheduler has called the last couple of weeks to get the port removal on the books I’ve gotten off the phone and felt like my insides were inside out. I haven’t told many people about the procedure because the whole thing makes me feel like concrete is settling in my throat. Last night, when I asked you why you were upset about your bad luck with the socks I was expecting you to say you were nervous about your port. I have spent 1,236 days since that port was put in waiting for today, and today, I feel sick. How do you feel sweet boy?

God Beau, I hope this is the right decision. Once you read this, in 5-10 years, you’ll have the gift of hindsight. You’ll see exactly how this choice wove into the rest of this story. But today, today I am not sure.

At our last visit, the team in Philly encouraged us to get the port out as soon as we were “comfortable.” I didn’t have the words to explain that just like I was never comfortable with it going in, I was never going to be comfortable with it coming out.

Do you remember when they put the port in? I suppose not. That time was such a blur. I only remember because I have a picture of it. But the other day when I looked at the picture I noticed Andrea’s pants in the background and realized I do actually remember that day. I remember her outfit, her pants. They were flowy and whimsical and I recall wondering how someone with such a hard job could wear such care-free clothing. She brought you that stuffed frog, the one with the port, and explained to us exactly how it would all work. We named it “Porty.” I sat in horrified awe that this piece of medical equipment was going to take up residence in your sweet body.

And today? Today I kind of feel like I am going to miss it. Isn’t this life wild?

A couple nights ago you asked if we still had Porty and I immediately regretted all the Goodwill purging I have done over the last 3 years. I knew he wasn’t around. I emailed Andrea and asked her if she could come see us today, bring us another Porty. She said she would. I told her what you said about being worried you’d relapse if your port came out. And you know what she said Beau? She said that feeling is normal and “part of the understanding of the complexity of treatment.” She wrote, ” I am proud he was able to share his feelings with you all and provide insight to his thoughts and coping with this milestone.” She has always been so good to us, hasn’t she? Before bed last night I told you that Andrea would be there tomorrow and she was bringing another Porty. You hugged me and said, “Porty!” in your silly baby voice that in most moments makes me crazy, but in that moment made my cry.

Last night at baseball when you were able to climb out from under the dog pile you ran to me and jumped into my arms for a hug. I hugged you so tight, Beau. You looked at me and said, “Mom, I scored the winning run! I am the luckiest on the team!”

You are Beau…The luckiest. Let it, continue, to be so.

Love,

Mom


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To learn more about Porty or donate to the charity that makes Porty possible please visit Kelsey’s Dream. Here are some pics of Beau with his new Porty. Normally he looks all grown-up, but that cuddle up on the right takes me right back to sweet baby Beau at diagnosis.


If you would like to read more letters I’ve written to Beau, here is one from last year:


6 thoughts on “Dear Beau, on the day of your port removal,”

  1. Your words move me once more Betsy. I’m taken with how whole heartedly you embrace this brutal and beautiful life. I wish you and your family an easy transition into this new way of being. And congratulations honey. I’m so glad your sweet boy is well. xox

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