"Aaron, It's Time For Your Eye Appointment"

Dear Aaron,

So today it happened.

I got a text addressed to you, reminding me that you were overdue for your eye appointment, and "eyesight is very important, so please call and schedule."

Yeah...

I don't think you really need that anymore.

I tried so hard to avoid those. I made sure that everyone at Primary's and their affiliates were notified. I called the eye glasses place. I forgot that we had been referred to a surgical eye specialist. They're not with IHC or Primary's.

They didn't know.

Now they do. 

Twenty-two months, 95 weeks, Friday into Saturday again.

Wednesday I planted 175 flowers and bulbs, many of them in your garden, mostly pansies and tulips. I wondered at the time if I was jumping the gun a little. I mean, it wasn't too early to plant those, but I felt a little bad pulling out and cutting the zinnias, marigolds, sweetpeas, petunias and snapdragons. I cut down all the balloon flowers and lilies out front. But I also reasoned that if I waited for a hard frost, I also had no desire to be out there. 

Thursday morning I got up and looked outside. Was that a hard frost after all? Nope, it was snow! Not a lot. The grass is short and was still poking up through it. But yes, snow. And I was glad I'd done all that work before. 

Your blanket and hospital gown no longer smell like you. I no longer wake thinking I forgot your meds. Someone asked me why I always wear a butterfly and I asked if they wanted the real reason, or the reason I tell my clients (since there are a bunch of butterflies in each office). He quickly said he didn't mean to pry and I told him it wasn't a problem. 

I've been wearing butterflies for over 15 years now, for you, for your friends. For all the children gone too soon. I told him my watch band is from the beads I used to make your trach chains, and he responded that it was almost like a memorial tattoo. 

I hadn't thought of that, but he's right. And so is my watch face, and my phone screen. Quiet pieces of you, and of Gramma, that I always carry with me. Yellow roses and butterflies. 

Gramma's roses still bloom. Pansies are planted around them. And your solar lights still light up the garden. I don't sit out there anymore 'cause I don't like the cold. But I still see them, see the rainbows scattered by various prisms around the house, some given to me by friends, and two by Gramma. 

You know, it actually didn't hurt as much as I feared it would when I saw that text this morning, more of a quiet ache than an overwhelming gut punch. 

Maybe I'm learning to carry it, at least for a moment. 

I still miss you.

Love, 
Mama

"The ocean has its ebbings — so has grief."

~Thomas Campbell 

Joy

Dear Aaron,

The weather continues to chill. Rain falls, the air is nippy, and I saw frost on the grass last week. The sun is just coming up as I go to work, and it's close to setting when I get home. 

It won't be long before it's full dark when I come by your grave.

Tonight I cleaned out your garden for winter. 

And tomorrow is the Wave of Light. 

October 15, International Pregnancy and Infant Loss Day. I mean, you were a teenager when you left, but still, you were and are my baby. I even called you my "forever baby" because of the care you needed. 

It's also Deborah's birthday. She's got her own two little ones now. Linnaea still remembers you and sometimes talks about you. Barrett came not quite three weeks after you grew wings. But he plays with your toys and I hope you two talked during that overlap. 

I've been reading old blog posts and some make me laugh, others make me cry as I remember the fear, the rush to stabilize you. But always, you came back. Until you didn't. 

With General Conference over, Joyful Christmas Sounds rehearsals have started. I almost didn't go. I find myself so tired again, and lacking motivation. That's probably due in part to all the stress and mess that we're still figuring out with the house. But Daddy encouraged me, and I needed it. 

We always start with the same medley, and as the notes rang out (or sometimes croaked out, I'm rusty), I felt it. I felt the joy of the season. I felt the joy of you! Because of Him, of His birth and life and resurrection, I get you back. I will hold you again. This separation will not last forever.

On my way to work this morning.

And you were and are all about joy. 

In 2016, we were trying to get a super-expensive med approved along with the equipment. In the meantime, you managed to catch a cold while in the hospital. It was the only time you got sick from something else while inpatient. (They worked so hard to keep that from happening,) But nine years ago today, I stepped out of your room to grab a bite to eat, and the nurse called. You had dropped your sats, a lot! You were on 15 liters, up from six when I left. I raced back getting there about the time the rapid response team did. I held your body as you shook, as they tried to place an IV and the RT was bagging you. And I pled with heaven to help you, help you breathe, breathe deeply. You came back, grinned at everyone with your trademark smile, and went to sleep. 

Coming home, it's hard to see, but there's a 
rainbow in the center reaching into the clouds.

So many times over your lifetime this sort of thing happened. You would be struggling, others would help, and you would smile. And then your last real smile....  Were you trying to remind me of all the joy of your life? Did you know that memory would be burned into me? 

Oh, I miss you, but the joy you gave, and continue to give, is worth every bit of the pain. 

As I drove to work this morning, the rising sun lit up the mountains in the west. And then on the way home, there was a rainbow, a promise of God's care. 

I will light candles tomorrow from 7-8 for you, and for all the others that parents had to give up. Acrossthe world, in every time zone, candles will be lit and for 24 hours, there will be a wave of light, light our children have brought to the earth, and then left behind to help us continue on.

Love you so much, kiddo. Thank you for being you.

Love,
Mama

Our birth is but a sleep and a forgetting;

The Soul that rises with us, our life’s Star,

          Hath had elsewhere its setting

               And cometh from afar;

          Not in entire forgetfulness,

          And not in utter nakedness,

But trailing clouds of glory do we come 

               From God, who is our home:

William Wordsworth

Living for Eden...

Dear Aaron,

Numb.

Seeking.

Searching.

Wondering if I'm the problem. If I'm looking in the wrong place. 

Even in the temple...

Do you remember the temple? We went a few different times to the grounds both in Salt Lake (usually with Michael during spring break) and here closer to home.

I'm trying but sometimes if feels like even with the car on and my foot on the gas pedal, I'm stuck.

But on Wednesday, your Michael said something that seemed so profound. "Instead going to The House of the Lord, make an appointment with the Lord in His House." (quoting Elder Bednar) That struck me, but it also felt awkward, stilted, mostly because I felt out of practice. But then, many, many things feel that way right now. Sometimes life seems to flow but often time feels jerky, racing ahead, stopping suddenly, and occasionally reversing.

So I tried. I saw a couple friends from the neighborhood, and that was nice, but still... I sat there and silently pleaded to know, to feel, to understand that He knows, He knows what I'm going through, dealing with, and that I'm not doing it wrong. And nothing. Even where I thought I would and often do feel it.

I sat in the Celestial room, still struggling. Dad came in and after a few minutes we stood to leave. As we passed a large group, a woman caught my eye. I haven't seen Tracy except maybe in passing in over 30 years. We lived near each other and were friends the first time Daddy and I lived in San Diego, back when David was born. She reached for me and held me, and I felt it. I felt His love surrounding me. My walls tumbled, my heart opened. 

I breathed.

Nine years ago I wrote about similar thoughts and pain. You were doing (relatively) well which gave my mind time to try to process; a painful procedure when you parent a medically fragile child. It was Conference weekend and I really didn't get much out of Saturday. But on Sunday, President Nelson spoke of Joy and finding it in the midst of any circumstances. That one hit and heaven's floodgates opened. 

Seeing Tracy opened my heart the same way.

There are still a lot of things going on that are, and will continue to be, super hard. The mom who was next to you the night you left me has now lost her baby girl. Two other little ones, a toddler and an infant, are critical. Child loss, losing you, is a pain beyond anything I ever could have imagined. 

But as I drove to work yesterday, "Living for Eden" was playing. The rising sun, the golden clouds, the birds flying in formation, they all reminded me of His love, and of your love. Life is such a beautiful gift.

I'm grateful for yours; I'm grateful for mine. I'm grateful for our amazing family and the chance to listen to the counsel from our leaders again this weekend. And I know I'll see you eventually. 

Love you so much, Aaron.

Save me a seat, 'k? 

Love,
Mama

"We all long for Eden, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most human, is still soaked with the sense of 'exile'."

- J.R.R. Tolkien