99 Weeks... Forever to Go

Dear Aaron,

Somehow things seem darker than I remember last year.

Bleaker.

Quieter...

I went by the cemetery and while it was actually earlier than I went last year (I get off an hour earlier because I also start earlier) the light seemed dimmer, the sky blacker.

I went to Arizona to spend Grampa's birthday with him, and it was good. 

And hard.

The house seems so different without Gramma. He told stories, many I've heard, some I hadn't. I told stories, too. Ones that featured him that he doesn't remember anymore. 

We sat outside and watched a yellow butterfly flitting through the bushes and flowers. It seemed to stay for a long time. Were you and Gramma close by listening too?

Back here, the trees have lost their leaves; they crunch under foot and gardens seem bare. We may see snow next week. Winter is trying to force her way in. November was hard for you. Surgeries, pneumonias, and then storming. We spent one Thanksgiving in the hospital and came close a few other times. I miss those days because it means you were still with us.

It's been 99 weeks now since I last told you goodnight and kissed your warm cheek. And it really was warm; you were fevering again. 

Sometimes I close my eyes and I'm right back there, in that PICU room with the little Christmas tree above your head, the banks of IVs, and the machines with their whooshes and beeps. 

And sometimes I strain just to remember your smile, your laugh, your wiggles and moves.

Tonight is hitting hard.

Will my brain always count the weeks? It's been almost two years. It seems so odd to have another year that never knew you coming to a close. 

Candles flicker on my shelves, lighting dark corners. Your memories light the darkness I feel, but like the candles, the flame is small and sometimes feels like the darkness will overwhelm them. 

I miss you.

Love,
Mama

The leaves of memory seemed to make

A mournful rustling in the dark.

~Henry Wadsworth Longfellow

Memories

Dear Aaron,

November.

Almost December again.

98 weeks (will my brain always count weeks?)

I'm sitting in the airport getting ready to go see Grampa for his birthday.

It's still dark outside, but with the time change the drive to work looks different. The mountains are dark against a lightening sky. Or if I'm heading west, I'm still in shadow but the peaks glow in the sunrise.  By the time I come home, darkness covers the land but the sunset paints the horizon in coral, orange and red.

Yesterday was the Primary program and your Linnaea was so articulate. And so tiny. She stood next to another girl her age and only came up to Ruby's shoulder. I was beset with memories. 

An early song was "A Child's Prayer." I remember all the times my parents encouraged us to pray, knowing that He was there, would listen, and I felt like a child again in need of that comfort.  

I remembered the program in 2019. (click the link to hear him do his part) 2019 was a good year, a happy, healthy year (mostly). It was the first (and last) time you were part of the program.  You said, "I love Heavenly Father and Jesus, and being with my family." 

Then the children sang a new song, "The Miracle" and I had tears again in my eyes. He is a God of miracles.  You are one of His miracles. Your life was and you continue to be a miracle, helping and strengthening. And I still miss you. And I miss Gramma. 

Thanksgiving and Christmas are coming. Last year we were with Gramma and Grampa for Thanksgiving, and I put Christmas up just before we went. This year I think I may put it up next weekend. Yes, it's early but I need the light, the peace, the comfort. 

I'm deciding that just like grief, there's no "wrong" way to celebrate, to remember. I want to remember. I don't want to forget. 

I love you, kiddo.

Thanks for being part of my life.

Love,
Mama

Jesus is a God of miracles;

Nothing is at all impossible to Him.

But I know this:

Of all His miracles the most incredible must be

The miracle that rescues me,

The miracle that rescues you and me!

Shawna Belt Edwards

Wedding Day

Dear Aaron,

Your Andrew married Zoey yesterday. They are such an amazing couple, and to see all your brothers and sisters (and brother-in-law and sisters-in-law) together, minus you and Michael warmed my heart, and tugged on my heartstrings at the same time. Andrew was barely seven when you were born; he grew up with you.

At the reception, I saw a few friends I haven't seen since before you passed. And others who are ever present in my life, holding me up. 

This is our first wedding without you, and it was beautiful, and heartbreaking. I'm learning to hold both at the same time.

I didn't break down yesterday, and Friday was just too busy, but on Thursday as I went to see you, I saw evidence that others had been there, too. Two little pumpkins balanced on top of your stone, and the rocks were neatly stacked. 

I'm not the only one who remembers, even though sometimes it feels like it. I'm not the only one who checks on you. Yesterday, Matthew and Kensey took some time to go see you as well. They were only in town for about 36 hours but came by your spot.  

You know, 16 years ago about this time we found out you were coming to be in our family! I gave Daddy a small pumpkin and painted an American flag on the side to tell him we had a new blessing coming. You were due on the 4th, but came a few weeks earlier. Daddy still has that pumpkin. 

But anyway, when I stopped by on Thursday, I got out of the car (I don't often do that) and knelt by your side, and sobbed. I miss you, and sometimes I wonder if anyone else still does. I mean, I know Daddy does. He spends a lot of time in the temple and always looks for butterflies in the paintings. But most people's lives have moved on.

I guess in some ways ours have too. I no longer aim for your bedroom to give meds. I've learned to appreciate the quiet in the house, but honestly, I never really wanted it. 

The days are shorter, colder. I no longer need to pick up your butterflies and lights each week because water has been turned off and they won't mow again until April. Our second holiday season without you approaches. I don't count the first Christmas. You were here until two days before. So our third Christmas without you, but our second holiday season. 

I'm singing with the choir again and we're doing two of my favorite songs, ones I specifically associate with you: "Were You There When the Angels Sang?" and "Jesus Christ, the Apple Tree." I believe you were there when the angels sang on that long ago Christmas morning. And Gramma, too, and maybe me. I hope so. Music has been such an integral part of my life. And taking shelter under Christ as the Tree of Life, as the Apple Tree, brings me much comfort. Music soothes my soul.

Tomorrow is Gramma's birthday, my first one ever without her. I know I took her for granted way too much. I couldn't imagine a world without her. Will you tell her how much I love her? How much I miss her? And happy birthday for me?

Missing you both on this fall day. 

Love you, Aaron.

Love,
Mama

"Music expresses that which cannot be put into words...
And cannot remain silent."

Victor Hugo

"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 

Don't Tell Me...

Dear Aaron,

I'm angry. 

I keep hearing the things people said. 

Things people still sometimes say.

And while I know they mean well, they. Just. Don't. Think!

"Are you excited to travel now that you don't have to care for him?" (Two weeks after the funeral.) NO!

"It's so good to see you finally getting back to yourself. I can see you feel better." (A month after you died). Um, no, I just wear the mask better, the mask I will wear the rest of my life. Grief makes people so uncomfortable.

"I could never be as strong as you. I guess God knew I wasn't strong enough to lose a child." Oh, it's not like I had a choice. And it damn near broke me. In fact, it actually did. I underwent cardiac testing six months after you left due to symptoms I'd had since you died. But I couldn't summon the energy to go in before then. Broken heart syndrome, takotsubo cardiomyopathy, is a real thing.

Don't tell me ,"he's in a better place."

Don't tell me, "You got to keep him much longer than you thought you would."  I know that, but I want you here. Now. Still. I worked so hard, loved so much, gave up almost everything to keep you alive. And you loved your life. Your life here. And you were loved so much! 

Don't tell me that "I know how you feel. We had to put our precious dog down a few months ago and I loved him just like a child." WHAT?? (Yes, someone actually said that.) I know people love their dogs, but honestly, every single person should realize they will outlive their dog. And it's a dog! Not flesh of their flesh, bone of their bone. They bought it; they didn't give birth to it. 

Halloween 2023
Aaron-dalorian,
showing me "The Way" 

Don't tell me "I only have so many ________ (fill in the blank with whatever event) with my children" 'cause you know, not really. You may only have so many with them in a certain age range, but really?? Are you planning to disown or bury them? Because I only got 14 Halloweens, 13 Christmases, 13 birthdays with you. And I get No. More. NONE! And I guess if they're worried about missing them in person, well, I missed three with your siblings, some of them very young, as we fought to keep you alive. 

So if someone wants to say those things, go ahead. Just not to a parent who has buried a child.

Your last Halloween, we draped your costume over you for a quick pic because you were so sick, fevering so high, so precarious, that we didn't dare put it actually on you. And Halloween is on the doorstep again, only five weeks away. 

Oh, Aaron, I miss you! The weather cools. Nights are officially longer than the days now. The leaves change and fall. And I relive over and over those last few months of your life. 

So many days and nights in the hospital. So many fevers, blood transfusions, close calls (that I didn't realize were quite as critical as they really were). 

It's been 92 weeks tonight. I went to sleep thinking it was just another night. We were on the right path. It was taking longer than I wanted but you would be okay.

And in the grand scheme of things, you did go home. You are okay, more than okay, but I'm still not. 

They say that anger is a secondary emotion; something else always comes first. 

Did you know that a broken heart actually hurts physically? 

Tonight I just want you back.

And I can't have you. 

Tonight I'm drowning.

I miss you.

Love, 
Mama

“I sat with my anger long enough until she told me her real name was grief.”

C.S. Lewis