Gratitude and Grief, Love and Loss

Dear Aaron, 

Thanksgiving yesterday, my first here at home without you.

Last year Gramma asked everyone to come, so we did. When I walked in, I didn't recognize her. She had deteriorated so much. But she said she was feeling so much better; she planned to see this year, too.  One year ago today. She was gone not even two weeks later. 

I worked to get Christmas things up earlier this year. Today was just my poinsettia arrangements and the Treepee. I've stayed busy, moving, distracting myself. And yesterday was chaotic, noisy, and amazing. Matthew & Kensey, Michael and you were missing, but everyone else was here, and here most of the day. No time to think.

But in the quiet moments, I find myself remembering. Grateful for you, and missing you terribly. 

Here we are again.

Friday into Saturday.  

101 times since that night, your last night here, your first day in heaven. 

Tomorrow I will go to your grave and decorate it for Christmas. I can't tell you how much I wish I was still choosing Christmas presents for you, juggling medication and nursing schedules. How strange it sometimes still seems to not be, and how painful the realization that those don't seem quite real anymore. They fade, almost like a dream. And then I'm hit with the gut punch agin. 

I miss you, and I miss Gramma.

I don't even have words for it.

A friend who also recently lost her mother put this up:

I was reasonably prepared for you to die. 

I was not prepared for you to be gone.

 And I think that's it. You dying was painful beyond words I have. Excruciating, gut wrenching, heart breaking to the point that every breath physically hurt. But there were things to do and tasks to perform, so amid the tears (and wails and gasping sobs), I did them. 

And now, I'm left with "gone." And that won't change. 

So I'm limping forward, wearing my mask, and even doing pretty well most of the time.

But Friday into Saturday . . . 

November into December . . .   

Thanksgiving into Christmas . . . . . . . 

I love you. I miss you.

Love,
Mama

“I'm just jealous of the angels

Around the throne tonight”

Donna Taggart 

 

Holiday Time

Dear Aaron,

This morning as I left for work, the bright morning sun shone in my eyes. Shortly after, dark, low clouds rolled in and my headlights turned on. To the northeast, blue sky behind the mountains. To the south dark gray hiding the mountains that were right there. Kinda felt like a metaphor for my life. 

Bright moments of joy and clarity, and then unexpected shadows, pain, sorrow. And still, work waited for me so I continued on. And stuck my grief in a box until the end of the day (mostly). 

I've got most of Christmas put up. Every year when we take it down, it seems there's an ornament that's missed. No matter how hard I try, the next year I find it. Last year was one that Grampa made, probably one the last ones. This year it was your Chinese Tiger that Gramma and Grampa sent from China. June 13, 2010 was in the 5th month of the year of the Tiger, and you were one in so many ways. And you made me into a Dragon Mother. I learned to advocate fiercely, and love deeply. And somehow, inexplicably, breathe through unbearable pain. 

I heard the term "season of grief" the other day and oh it fit. 

November into December just hurts. 

It's dark.

Christmas is coming.

You're not here and neither is Gramma.

On this day in 2018, I wrote about our holidays. You'd been a turkey yourself. My good china platter held the turkey and it was close to the edge of the table. Disaster was narrowly averted when I realized you'd grabbed it and pulled it towards you. Not that you'd eat it or anything, you just wanted to play. But then I wrote (in naivete and ignorance): 

"Holidays are kinda weird for medical mamas.  You're so grateful for each one, but mindful that even the close ones aren't really guaranteed."

Sigh...

Never in my wildest dreams did I think you would go two days before Christmas. Even in your last few hours, I planned to spend Christmas in the PICU and bring you home a few days later.  2023 was the one year I decided to take the Christmas picture later, after Christmas when it would be quieter. The one year I didn't plead with God to give us another Christmas. 

It was quieter...  Too quiet.

I miss you, Aaron. This time of year hurts. Lights, music, joy, and sorrow. I told someone today that it's kinda strange to hold both joy and sadness together, and it is.

But I do it.

There really is no other option.

Love,
Mama

“Joy and pain, they are but two arteries of the one heart that pumps through all those who don't numb themselves to really living.”

Ann Voskamp 

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