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.
A few weeks ago I sat on the patio, often trying to find a little shade, and alternating putting my feet on the hot pavement because it felt good, and picking them back up because it burned.
Today I don't look for the shade because, even though it's just after 7, the sun is down, the sky is getting darker above me. I wear fuzzy socks on my feet and a hoodie to protect me from the chill.
A few more weeks and I'll pull the flowers from the gardens, turn off the sprinklers, and get things ready for winter. I won't sit on the patio after that for several more months.
Time keeps moving. The world keeps turning.
I had a favorite song as a child (okay, a lot of favorite songs), but this one compared the world to a feris wheel, and a merry-go-round.
The world turns round like a Ferris wheel.
Some times you're low and sometimes you're high.
But even way down you can never forget
The thrill you feel when you're touchin' the sky.
I think even now, I do have some high points, although I don't know that I feel like I'm touching the sky. I do remember some incredibly high points in your life. The time your echo showed "normal cardiac function when you were about six weeks old, after you'd been to the PICU for heart failure. That was the first time of many that we were in that unit. I was so terrified, so heartbroken, and then when we got that news after a week... I mean, I think you could have powered the whole hospital on my joy!
Your first birthday was another.
The world turns round like a merry go round.
It lets some off and it takes some on.
Some horses are high and some horses are low.
Some turns are short and some turns are long.
And then, your turn ended. So much longer than we'd been told we could plan for, and yet still too short. So we now enter the season where your decline sped up. You were in eighth grade, but you didn't go very much. I think you missed more school days that you attended. You loved going to school, being with your classmates and Holli. But your body was done.
We're a determined group, our family, and I think that determination (some call it stubbornness) is what kept you here as long as you were.
And I'm grateful for that.
The world keeps turning, keeps moving forward. I get farther and farther from when I last saw you.
Sunday I'm speaking in church. The topic is "Overcoming the World and Finding Rest in Christ." I have no idea what I'm going to say yet. But I think you did this. You did overcome the world. The rest of us may rush around, caught up in the thick of thin things. But you didn't. You found joy in simplicity, and courage and endurance through more than most adults deal with.
I sit here as the sky darkens. I smell the smoke from someone's firepit and hear the crickets still chirping. Kids playing games call to each other. My outdoor lights turn on and the little fountain in my planter trickles.
I went through your first 1000 days, 100 days at a time, and made a video for you.
By 1000 days of life, we had settled into a routine.
And I guess the same can be said for 1000 days of loss.
I still miss you.
I always will.
That will never change.
But I no longer listen for your alarms, or rush home as soon as my work day is over. I do still go by your grave every night. That too has become part of my routine.
Last week, I found more bags of your ventilator water. Not many, but a few, forgotten in the drawer where I stashed them for easy access. They're now gone too.
I have songs running through my mind: "(It's Gonna Be) Okay" by Piano Guys, and "The Hands of Time" from Brian's Song. The first was Michael's favorite, and my theme song for my life for so many years. I just couldn't listen to it after you left. I felt like it had all fallen through, the walls had come down, and I was all - tapped - out. But now... Well, maybe I'm learning to breathe again. I know you'd want me to. There are good things. And yeah, somehow, some way, it will be okay.
And then "The Hands of Time." I hadn't thought of that song in years but was reminded of it through someone's comment on Sunday night. I used to sing it while playing the piano, like all the time. It took just a brief reminder before I remembered it all.
If the hands of time were hands that I could hold, I'd keep them warm and in my hands, They'd not turn cold.
Hand in hand we'd choose the moments that should last, The lovely moments that should have no future and no past! The summer from the top of a swing, The comfort and the sound of a lullaby, The innocence of leaves in the spring, But most of the moments when love first touched me.
All the happy days would never learn to fly, Until the hands of time would choose to wave good-bye!
And oh, I wish I could hold the hands of time, freeze time, hold you again, just one more time, see you swinging, laughing with your brothers, cuddling with Daddy. I miss the innocence of the day 1001 days ago, when I couldn't even imagine you not coming home.
But then I read back over some of my posts the last 22 months of your life, and maybe I did know... deep inside. I wondered how much longer you would hold on. But I couldn't imagine life without you. You had woven so tightly, so intricately, into the fabric of my life, my own breath.
It is said that 1000 days makes you a beginner, but it takes 10,000 days to make you an expert. By the time you are gone 10,000 days, I will be approaching my 82nd birthday. Maybe by then we'll be together again, or shortly after.
Maybe....
In the meantime, I'll keep going, keep trying, keep loving you and the rest of the family.
And keep missing you.
Love you, kiddo.
Love, Mama
“One becomes a beginner after 1000 days of training. One becomes a master after 10,000 days of practice.”
The world keeps turning around, and going around the sun. It seems like it should have stopped, but it didn't. 141 weeks. My brain still tracks the weeks without me even realizing.
Michael is home and gone to school. Linnaea has started first grade. Andrew and Zoey blessed little Ryder. Did you guys hang out together? Did you tell him about the fun times you had with his dad?
The sun sets before 8:00 now, and doesn't rise until 7:00, according to weather stations. Except that doesn't take into account that we live against mountains on the east. It's really more like 8 am. The weather is cooler and school has started. If you were here, you'd be a junior in high school.
I went looking for some stickers today and while I still can't find them, I found a bunch of your things I just put in my closet. There's the white board that we kept track of recent changes on, your meds sheet that listed so many doses! Medications that helped your tattered heart and lungs and brain keep going. I had forgotten that you weren't digesting well at all. We had just changed your feedings to run 100 ml over an hour and a half, less food over a longer period of time. Years ago, you could take in a full feeding of about 250 or 300 ml in about ten minutes.
I think in many ways, I couldn't see the forest for all the trees. Your body was shutting down, but I couldn't see it. I saw it in my mom. I've seen it in others. I knew (at least academically) what the signs were. And yet, I was so preoccupied with keeping your heart beating, your lungs breathing, that I missed it. When you left, I was in shock. I kept sitting there, holding your hand, waiting for it to move, for you to grimace, to cough, something...
But you didn't.
With Michael coming home, I won't be writing weekly emails anymore. For the better part of 13 1/2 years, I wrote emails to your siblings who were gone. I'm not sure what to do with that now. Do I send out a family one? Or do I just write to you? It's like a journal has been taken away.
Tomorrow I'm teaching Young Women's about the blessings of priesthood keys. And once again, I've procrastinated. I mean, it's definitely been on my mind, percolating so to speak. I keep thinking of all the priesthood blessings you received through the years, starting with before you were even born. I remember the stranger, a dad, in the ER. We had to wait outside the room for them to stabilize you before he could come in. I don't know his name, but I will be forever grateful to him. The young men in the hospital, your dad, your brothers who stepped in. And all the prayers offered on your behalf by so many.
And I remember Michael, barely four, asking me if Heavenly Father heard his prayers for you.
I miss you so much, Aaron. It's still strange how life keeps moving forward and sometimes it seems that having you here was just a dream.
