If I stay quiet enough, I can hear the clanging of the mini rectangle of plastic against metal – a mini Nintendo game you never got a chance to play. It was hanging from your desk lamp and positioned right by your bed for when you woke up and saw that it had finally arrived for you. We knew you’d want to play it ASAP.
Please, Ben. Wake up. It’s here for you.
But the sleeping was outweighing the waking. Unfortunately, the sleeping wasn’t very restful. Apparently, that’s common near the end of one’s life, restlessness. You rocked yourself a lot of the time as a way to self-soothe… a way to get through. With each gentle rock, the piece of plastic clanged against the metal lamp shade. The sound almost became hypnotic. And I shouldn’t say clang. It was more of a chime. A soft noise. Chime… chime… chime… in perfect time as if it was purposefully matching the beat of a metronome. It probably isn’t what most people would consider communication, but my son was making that noise by himself. It was his contribution to our vigil that we were holding for him.
It broke my heart how you responded to nurse Lauren’s visit. It was probably the one that had you the most concerned; why was she at our house? Why was everyone whispering? You said out loud at one point, “It must be bad if all of you are in my room.” Then there was a sweet hallucination (what an oxymoron!) when Lauren was getting ready to leave… you automatically lifted the bottom of your shirt so Lauren could de-access you from your IV. Oh God. My heart screamed. This had been your normal for so long, it was an automatic response. You were drifting between the world of being here and leaving. My logic allowed me to say the words out loud, “Ben, you have my permission to let go.” whereas my heart was screaming “NOOOO” louder than an air horn.
That’s how it feels most days, like every single pore of my skin has its own air horn behind it and if I accidentally brush up against anything, they go off. I think most of them are just waiting to go off all at once despite my desired efforts to seem “normal.” Today, I had a close call at Michael’s. A woman was buying a wooden clipper ship, one of those items you paint yourself – and I could immediately hear The Legend of Zelda Wind Waker soundtrack running through my mind with the ship floating out to sea, which generally brings me so much comfort because of how special it was to you. But I was outside of my safety zone. In public. The air horns can’t go off here. But the threat was at a very high level: Red or Orange or Five… whatever is close to “we’ve got a middle-aged woman in aisle five doing some weird shit that needs to stop STAT.”
So I made it home before some of those air horns went off. And now I’m sitting here, hurting, wanting, wishing, waiting. And, yes. Sometimes I go in your room and try to replicate that gentle sound you left me with.
But my rhythm is way off.
With tears flowing, I want you to know, my heart still hurts with yours. My thoughts and prayers still surround you and Maddy. ((((BIG HUGS)))) Thank you for continuing to share your raw moments and life with us.
Love you so much ❤️
I miss Ben, I miss you, I miss Maddie. But that you for airing your feelings in such a beautiful way. You are so strong 🌻. love, Pam
So much love to you. Your words about the way you were feeling in Michael’s is an amazing reminder to always be gentle as we never know what someone is going through. As always, you are an inspiration to me.
Oh, Sarah, I’m so very sorry. The hurt, the hole in your heart, the empty place at the table, an empty bedroom, the grocery store, people who won’t speak his name out of fear, his favorite song on the radio, and sometimes there is nothing but the tears and gut wrenching pain. I am there with you. They will not go away but you will keep stepping and breathing because of Maddie. Those of us who have gone before you are here if you need anything!! I will PM my number to you.
Hugs and Love ❤️ I love the Bean.
Tears and heartfelt prayers . I miss him and my heart hurts for you all. Hugs😔
It took me a couple of attempts to get through this one, it brought back so many memories of Jackson’s last day and like you mentioned, I couldnt lose it in public. I dont know if it gives you comfort or concern that all these years after losing him, I still have those moments of deep, deep sorrow. It’s not often but it will never completely go away. I remember as a teenager, my grandmother crying every once in a while about a son she lost a week after his birth. I remember thinking, “get over it, it’s been 50 years”, but after losing Jackson, it gave me comfort that the love she had for him all those years ago never went away…and she only had him for a week. It just means that the love was so special it will remain forever. As always, thanks for sharing. I love you my friend.
So beautifully written and as one who has also lost a son, I know your pain. Ben will always remain in my thoughts. His quiet strength and beautiful smile will never be forgotten.
My heart goes out to you, Matt and Maddie. I can’t imagine what you all are going through. You’re one of the strongest people I know, dear Sarah. We used to sing a song at church that said “earth has no sorrow that Heaven cannot heal”, even though it’s hard to imagine now.
May God be with you all.
Write write write.
You are so gifted , your heart flows through your words .
I am told there is only one way around it .
I think of you often and lift you and your daughter up in prayer!!
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