Mama
In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
Thursday, June 26, 2025
My Warrior
Mama
Friday, June 20, 2025
Are You Nudging Me?
It's been a heavy week, and I'm weary.
Lots of struggles; little sleep.
And today I completely broke down at the cemetery and started yelling for the first time in a long time.
"How are you gone???"
And then I sat sobbing.
On Tuesday I picked up your balloons. Stuart is a little worse for the wear and is lying down, but Bob was still going strong. A draft last night caused him to jump out at me and I startled and laughed.
This morning I couldn't find him, and then as I turned the corner, there he was. In your room, floating about two feet off the ground. Tonight after work, he was just resting his feet gently on the floor.
Hanging out where you used to. Is this your way of nudging me?
Oh, I miss you.
I'm tired.
It hurts.
Tomorrow is one year since Lucy danced into heaven. Today is 78 weeks since I last saw you awake. And Monday is 18 months since you left us.
It's been almost two weeks since Jillie joined you, too. Having just turned 18, I thought she was one that would live almost forever. But on June 8th, she fell asleep and woke up with you guys. I don't know how to fathom this, and I know I only feel a tiny portion of the pain her family does.
Grief is ugly and painful and so, so hard!
And still, I will pay that price for the gift of having known you, loved you. And count myself blessed.
Oh, Aaron, give me strength...
Love,
Mama
"Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve."
Saturday, June 14, 2025
15 Years and One Day
So many thoughts...
You turned 15 yesterday, at least in earth years. I have no idea how birthdays are counted in heaven. But if you came to earth to gain a body, a principle part of progression, I think it's still appropriate to celebrate that in heaven as well. I hope you did.
We had pizza and cake and ice cream. Daddy thought that was an appropriate celebration meal for a 15 year old boy. Linnaea blew out your candles, but there wasn't the "one to grow on" that we always put on, a tiny bittersweet tug at my heart.
We put balloons at your spot on Thursday night and I went by again Friday morning. I'm glad I did. I figured that especially the latex ones wouldn't hold helium well, so I tied them to a dowel along with the Happy Birthday balloon. Well, I was right. When I went by again last night, the red, yellow and blue ones were sagging and pretty sad. Your minions were bopping along just happy as could be. But your Happy Birthday balloon seems to have broken loose and gone for a ride.
Did it come find you? Did you get to play with it?
On your first birthday, Daddy read a poem (because I couldn't do it through tears) about balloons and then we released hundreds. This year, I want to believe that one special balloon reached out to you?
Today I found a rainbow streak on the wall outside my room and smiled as I touched it. You touch so many lives, you are so loved. As time moves on, (77 weeks today) I know you fade from more and more people's thoughts. But you're never far from mine. And there were those who reached out yesterday; a few family members and some nearby friends, but overwhelmingly it was other medical mamas, and angel mamas.
We know, we carry our angels in our hearts. You are always part of me.
Love you, little man.
Love,
Mama
"The soul, light as a feather, fluid as water, innocent as a child, responds to every movement of grace like a floating balloon."- Jean-Pierre de Caussade
Wednesday, June 11, 2025
Dear Mama
Six months ago you slipped from this life (it was also a Wednesday). Two days from now is Aaron's 15th birthday. Are you planning his party? Will it be amazing? If you have anything to do with it, I bet it will be. I wish I had an invite. I mean, I wouldn't stay, but coming for a visit would be wonderful, except I don't know that I would actually want to leave.
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Morning walk with the dogs and Esther. |
We went to see you on Sunday and again today. I've noticed rocks that people have left at Aaron's spot, and I left one by your light-up dragonfly. I have no idea how long it will stay before someone pushes it back into the other rocks, but I know it was there, and I suspect you do, too.
It's weird being here without you. Just not the same. I wander around the house looking at old memories. I found two cross stitch pieces I made you, and while I know you treasured them, I wonder if you knew how much making them helped me. They were a way to change my focus from the stress of college classes and recenter my own self. I saw the little china girl who used to have a small dog attached to a chain and lit up. The dog and chain are now gone, and I don't know if she still lights up, but I seem to remember it came from Nana's.So many reminders...
Miss you so much. Give Aaron a hug for me and tell him "happy birthday," 'k?
Love,
Rebekah
“My mother is a never ending song in my heart of comfort, happiness and being. I may sometimes forget the words but I always remember the tune.”
Saturday, June 7, 2025
Your Birthday is Coming
Yesterday I picked up all the flowers and butterflies at your site. This is the week that they do a full cleanup and everything that is not permanently attached is removed. Since I leave this morning for Arizona, I got it all last night.
But it was hard to leave it with nothing so I didn't. I scattered rose petals from Gramma's rose in the garden and left one big butterfly that had lost a wing in the wind. Placed sideways on your stone, it looked like it was still intact so I left it. And it didn't look quite so lonely that way.
I'm going to see Grampa today and I'll be there through Wednesday. It's a pretty quick trip, but I'm glad for the opportunity. I miss him, I miss Gramma. I miss you. Wednesday, the day I come home, it will be six months since she went Home. It still seems weird to be in a world where she is not, where you are not.Be close, okay?
One week from today is your 15th birthday. Three years ago, I finally sent out invitations just five days before your party. You were turning 12 and I actually didn't dare send it earlier in case you were in the hospital, or even not here at all. I felt like it might be your last one with us, and it almost was.
This time two years ago we were in a fight to keep you and you teetered on a knife's edge. The NP who put in your arterial line had said he wasn't sure you would even tolerate that, meaning survive it. I guess that's why they handed me the gown, hair net, mask and gloves and let me stay by your side. You did make it through, and by your 13th birthday, your golden birthday, you were able to sit in your wheelchair.But that was the last one with you here, and now your second birthday since leaving approaches. Honestly, I'm not sure what or how to feel.
I know I miss you, beyond words.
Love you beyond words, too.
Love,
Mama
Wednesday, June 4, 2025
Butterflies and Baby Steps
Your birthday is approaching. The weather is warm, sunny, and it stays light until about 9 at night. AND it's light when I wake, too.
I do better in the warm, the light.
But there was something else, too.
I wrote about finding the butterflies destroyed at your spot. Oh, that hurt. A few friends offered to help me put more out, but I have to find the "safe" place I put them. Sigh...
So anyway, on Monday when I stopped, I could tell there had been a change.
I got out of the car to water the flowers and look closer.
Butterflies. More and more butterflies!!
I have no idea who did this, but someone, or maybe a few someones, came by and left so many.
I cried again, but this time was an overwhelming sense of care, of love. This is the kind of community we live in. I guess that's part of why the destruction hurt so badly. I didn't expect it here. I see lots of mementos left, lovingly placed, and not bothered at all.
And your butterflies, the ones that we've put out since you left almost 18 months ago, they had never been bothered.
And my mama heart cried out in gratitude when I saw your beautiful place.
You know what else I did? Today I actually listened to "Okay" again. Man, I played that song constantly over the years, for you, for me. Singing it at the top of my lungs, music blaring from the speakers, reminding myself, giving myself courage to continue to fight for you.And then, when you left and I was so lost, I just couldn't. I couldn't. I tried a few times but never got more than a few beats into the song before I had to shut it off.
Today I listened to it. I couldn't sing it, but I also didn't cry. Baby steps. Stutter steps. And I'm sure I'll crash down again. (That's kinda a given.)
But still, my soul was at peace.
I miss you, Aaron. I always will.
Love,
Mama
“Butterflies are like angel's kisses sent from heaven.”
Sunday, June 1, 2025
June 1st
A crystal pendant hangs in my window where it catches the morning sun and sends rainbows into the room.
"Look for me in rainbows...
And I do.
Another that Gramma and Grampa gave me for Christmas a few years ago hangs in my office window. Another on the back door. An angel on my rearview mirror.
I see rainbows everywhere. And I see you, too. Not with my eyes, with my heart.
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June 2023 |
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June 2022 |
Your birthday is in 12 days. 15 years old. As I think about it, sitting here on the patio, I smile even through the tears. You are an amazing soul, my son. I cannot understand what I did to deserve having you teach me.
Right now, the crickets are chirping, a bee is buzzing somewhere close by, and the hummingbirds come to sip at their feeder. The dogs are lying on the grass and the sky is blue. I see your butterflies, your flowers, the raspberries growing and I am grateful for the peace, the chance to sit and think about you.
I miss you, Aaron. I miss you so much.
I'll look for you in rainbows. And everywhere.
Love,
Mama
“How lucky am I to have something that makes saying goodbye so hard.”