You and Matthew

Dear Aaron,

Yesterday was Matthew's birthday. The two of you played and laughed together so much. Now he's in Wisconsin and you're in Heaven. You wear one of the shirts he gave you in the picture on your gravestone, in your funeral program, and in my Facebook profile picture. 

But you two are a pair! The smiles and laughter you both freely give. I can't wait to see the shenanigans you guys pull off on those golden streets. 

Days are getting shorter now. The sun isn't quite up yet when I get up, and it sets sooner too. School starts in three weeks for Alpine School District. I should be expecting a phone call in a couple weeks telling me who your bus driver is and what time you'll be picked up and dropped off. After you left, I would sometimes see your bus driver coming up the road if I left at the right (or wrong?) time. 

Joseph and Sarah get here tomorrow and Michael speaks on Sunday. Empty nest day is coming closer and closer. 

And I got a bill this week for some of your medication; a bill I spent hours on the phone clearing up a year ago, and then again in January. They tell me it's "taken care of now" but I have heard that before. In January, the representative told me she would do a "one time courtesy credit, but only one time". I had already told you had passed, so I informed her that since you were dead, it was not likely that I would be asking for it again. But I guess she never actually put it in, so I got the bill. It's frustrating.

Anyway, there has been good news, too. Things that I don't want to share because it's too private, too sacred. So I cling to that. It simultaneously comforts me and breaks my heart. 

I love you, Aaron. I am so grateful for you. It's hard to believe it's been seven months since I held you, since your heart stopped, and somehow, inexplicably, mine kept going. 

I miss you.

Love, 
Mama 

"Smile ... it makes people wonder what you're up to."

- Jill Shalvis

Daddy's Birthday

Hey kiddo,

It's Daddy's birthday. 

It's kinda a quiet one. He worked, I worked, Andrew worked, and Michael did some, too. Mary came by and your siblings have called.

Have you been hanging around? How are you? Do you miss us, too?

It seems so strange that the world just keeps turning, life is moving on. Your niece and nephews are getting bigger it seems every time I see them. 

It's been seven months tomorrow, seven months and so many more to go. 

I've been feeling numb lately, and tired, almost like I'm just marking time and going through the motions of living. I guess that's normal, whatever normal is. 

I do love the picture we chose for your headstone: that cheeky smile with the shirt that says, "Smile, it makes people wonder what you're up to." I see that and smile through the tears. 

Someone close related an experience while in the hospital and very ill. They spoke of family members coming to them through the dark fog and hugging them, loving them, and reminding them why they wanted to come back. 

Did that happen to you? Did you feel us loving you, praying for you? Did you feel me holding your hand all those times we sedated you to give your body a fighting chance? Did you hear me saying I needed you to fight? 

And was it your soul speaking to me that last time telling mine that it was time to let go? That was the one time I didn't ask you to stay. And when I finally gave permission to the team to not try to restart your heart if it stopped. 

And less than three hours later, it did. 

I miss you, Aaron. Miss you so much.

Love you, little man,
Mama

“One of the greatest titles in the world is parent,
and one of the biggest blessings in the world is to be one.”

— Jim DeMint

Today is Heavy

Dear Aaron,

Today just feels heavy.

I don't know if it's just because... Well, you know, grief. 

Or because it's 30 weeks tonight into tomorrow.

Or because I'm worried about some family members.

Or it's that tomorrow we go to the temple with Michael which really seems to emphasize that we're empty nesters long before I thought we would be. 

I mean, really, I knew that to get to this milestone, you would be gone, but I didn't plan for that. I didn't want it. I still don't. 

I guess if people read the blog, they probably think I'm generally in pretty rough shape. 

I'm not, it's just that when I am, I write. I write to you, 'cause I miss you. I spent nearly every single day of your life with you. And over the last year, it was also almost every single night as well. I talked to you every day. I did your cares, I changed your diapers, pulled meds, gave food, laughed, and wrestled you. Held your hand for IVs, art lines, echos (okay, those I held your body too) and so many more procedures. You counted on me to keep you safe, and I tried, I tried so hard. 

We were intimately involved in each other's life.

For the past 14 years, I haven't been able to wear my hair down at home. It's funny, 'cause I can if I'm not at home, but the minute I walk through the door, it has to go up. I totally blame that on you. You loved to grab my hair, my glasses, anything within your reach. You wanted to connect, and so did I (just not with my hair). 

And now, connecting seems so much harder. 

Tomorrow I'll be in the temple, in the celestial room, where I sat with you last summer. Will you be there? I think you will be. I hope you will be. 

Are you watching over us?

I miss you.

Love, 
Mama

“Without you in my arms, I feel an emptiness in my soul.
I find myself searching the crowds for your face –
I know it’s an impossibility, but I cannot help myself.”

― Nicholas Sparks 

Thanks for Being There

Dear Aaron,

Thanks for keeping me company.

I have never felt your presence before. Others tell me they have. I have hoped that you've been close by, but that's all it has been: a hope. 

Tonight, coming home from dropping things off at Mary's, I could feel you. I could almost see you, sitting next to me in the passenger seat.

You were bigger, the size of a typical 14 year old, but it was you. I felt like I could almost reach out and hold your hand. 

And that's all I wanted to do. I did reach out, and could almost feel your hand in mine, holding me, loving me. 

Now I'm sitting on the patio, crickets are chirping, the hummingbird zips over to the feeder and back to the copse of scrub oak just behind the fence, and then back again for more nectar. A dragonfly swoops and glides, and the sun is low enough to cast shade over most of the yard, bringing cooler temperatures, just right for being outside. 

I miss you, Aaron, but my soul knows you're at peace. No more tubes, no more wires (although you always did think those were toys). No more sedation, fevers, cranky brain spells. 

I remember your last smile, so full of mischief and love as you looked around the very full PICU room ten days before you left us. 

It's been almost seven months now; 30 weeks this weekend, over half the year since you left. I'm learning to move with the grief. I don't think you ever really move "through" it; that would imply an end. But as I sit here, I feel a measure of peace, of comfort. It's quiet, and your hummingbird just flew close, as if to say "hi." 

Hi, my little boy, maybe my-not-quite-as-little boy. You're amazing. So glad I am your mom.

Love,
Mama

“Things we lose have a way of coming back to us in the end,
if not always in the way we expect.”

J. K. Rowling

Return With Honor

One year ago today.

Dear Aaron,

This popped up in my memories today. 

A year ago Andrew came home. (And a year ago tomorrow Joseph and Sarah were married; it was kinda a busy time). 

We made signs, fun signs (Like "Ladies, look who's home!" and "Uncle Andrew, we missed you this much! with wide spread hands). 

And this one we perched on your chair because it just seemed like a good place to stash it. 

Somehow, while there were some tears, and lots of smiles, it was in greeting you that your siblings broke down. 

Each left knowing that while they were gone, you might also leave. Each went anyway, knowing that helping others learn about Christ and families and joy was important.  

Andrew and his mission president were actually the only ones I ever called to say, "I don't know if he will make it." And that happened twice. 

Twice I had to tell your brother that you might not be here, and yet you were. You did it. You pulled through. I never did have to call a mission home, or a missionary to tell them you were gone. I asked you to never make me do that. Of course, I also asked you for 13 more years as well, 13 more, not 13 total. 

Thank you. 

And then, just before Christmas, you had your own "Homecoming." You returned with honor. You fought the fight, you finished your course, you kept the faith.

Now it's up to me to keep going, keep running. Have I mentioned how I hate running? But no matter, I will, 'cause I know the prize is worth it.

I love you, little man.

Love, 
Mama

"The journey of high honor lies not in smooth ways."

Philip Sidney

Michael's Birthday

Dear Aaron,

It's your Michael's birthday. He's 18 today. That seems so weird. 

I remember 33 years ago tearfully asking a family member if they would take our children if something happened to us before kids were grown. I was expecting your oldest sister, and the thought of not being here, but also leaving you guys without plans, was so hard. 

And now, now it no longer matters. 

I did worry about what would happen if you somehow outlived me, but figured it wouldn't be an issue. And I was right. 

But your Michael... 

You guys really did grow up together. He wasn't even four when you were born. He loved playing with you, reading to you, zooming you around in your stander or wheelchair. You loved to tease him. And frankly, much of the time he didn't even realize you were handicapped.

In fact, at one point, he was looking through his own baby pictures and asked how it was that we hid his tubes and wires, 'cause you know, that's what babies have. 

He carries you with him still, and I think you carry him as well. He wears your initial around his neck, and when he can't do that due to missionary rules, he's already got four different tie bars with your initial on them.  

And I'm sure you'll be right there with him on his mission over the next two years.

He's such an incredible young man, all you kids are awesome. I don't know how I managed to be so blessed to be called your mother. 

I wouldn't trade it for the world.

Love, 
Mama 

A brother is a friend given by nature.

~Jean-Baptiste Legouvé

Here. And Gone

Dear Aaron

I’m sitting here, heartbroken, next to you. 

29 weeks, twenty-nine.

And today I opened Facebook briefly before leaving work.

Rebekah is gone. But you probably met her at heaven’s gate. 

Rebekah is the reason so many of us found support, guidance, friendship. She was just a little more than a year older than you. When she was born, her mom couldn’t find any real support, no networks, no communities, so she set up really the first Trisomy Facebook group. And I found it. Many others did, too. Almost 5000 of us…

All because Susan was willing to reach out and share Rebekah.

And Rebekah was one that I really thought would live, well, (almost) forever. 

In fact, she was supposed to go home today, home to her family, not Home to Heaven. 

For the first time in a long time, I wept all the way home from work.

You know, Aunt Liz reminded me of what I said when you were born, and again when you left.

Both times I called and didn’t even greet her. 

On June 13, 2010, I said, “He’s here!”

And on December 23rd, it was simply, “He’s gone.”

Here.

Gone.

Never forgotten.

Oh, baby, I love you.

I miss you.

Love, 

Mama

Fly, fly little wing

Fly beyond imagining

The softest cloud, the whitest dove

Upon the wind of Heaven's love

“Fly” – Celine Dion