Monday, March 18, 2024

New Flowers

Hey Aaron,

I went by your site today. I took down the St Patrick's Day flowers and put up new ones and Easter eggs. 

It's Trisomy 18 Awareness day today, and honestly, this was probably one of the few things I never thought about having to face after you were gone. I've wondered what Christmas and your birthday would be like. I have thought about placing your headstone and your angelversary date. 

Since you've passed, each Friday/Saturday catches my heart. It's been 12 weeks, and now we're coming up on three months...

But this one caught me unawares. 

So many people wore blue for you today. Family, friends, even some of my coworkers. Some who knew you closely and dearly, and others who only know you online. As they tagged me in pictures, I felt their love. 

It touches me so deeply to know others miss you too, that you influenced their lives as well. 

I think I'm doing okay, although I can be a bit scatterbrained. Saturday I went to the store to pick up a few things. Lucky it was just a few things. I was almost home when I realized I couldn't remember paying for them, and I couldn't find the receipt. Came home, called the credit card company, and nope, didn't pay for them. How embarrassing! So I went back again. Sigh...

Yesterday was a bit hard, too. I'm going through the motions, trying to make sure I'm where I'm supposed to be, doing what I need to so that I can heal. I don't think that means I'll ever stop missing you, or that the ache will ever fully leave. But I hope that I can find joy again. I have faith that I will. 

I love you, little man. 

I miss you. 

It is the first purpose of hope to make hopelessness bearable.

~Robert Brault

Sunday, March 17, 2024

Trisomy 18

Dear Aaron,

Today is St Patrick's Day; you do actually have Irish in you. 

And tomorrow, tomorrow is Trisomy 18 Awareness Day.  March 18, 3/18, three of the 18th chromosome, that "love" chromosome.  I'll be wearing blue for you. 

And I have no idea what to say about it. It almost feels like I've already said everything. Each year on this date (or around it) I've written. 

I'm struggling, kiddo. Right now I mostly feel numb. Or I hurt. I'm assuming it's temporary, but I don't really know what "temporary" means here. I'm going through motions, not really wanting to "do" anything, maybe in part because a lot of the things I needed to "do" have already been done.

Your equipment is all gone, well except the suction and pulse ox machines I'm keeping for the time being.

Your van, your bed, your gait trainer, your bath chair, your wheelchairs, your car seat, your lift; not to mention all the supplies we used monthly; all gone. The equipment company came and took your ventilators, feeding pump, extra pulse/ox, humidifier, and all the many, many oxygen tanks we had. 

I've cleaned your room and reset it as a living area again. I'm nowhere close to being ready to go through your closet with all your blankets, stuffed animals, clothes and go bag. 

All these "things" that were so necessary but only because they supported you, and I guess I don't really miss them.

But I do miss you. And it hurts.

So is it worth it? Worth having known you, fought for you, loved you?

YES!!

It absolutely is. Even knowing the soul-crushing, mind-numbing, physical heart and lung aching pain I feel, I would do it all again for the privilege of being your mom. 

You, my son, are amazing, wonderful, such an incredible teacher.

And maybe that's what I want to say about Trisomy 18. 

It gave me a gift there was no other way to receive. 

Sometimes a parent is asked (it's always a hypothetical question when it's posed) if they would give their life for their child. And of course, they always say, yes.  But here's the thing, Aaron, I did that. Special needs moms of medically complex children do exactly that. We give up sleep, we learn, research, and study. We fight for care. We teach others. We give our lives to keep you alive. 

And then when your life is over, when your heart and lungs stop and ours keep going, it's a surreal, strange experience. 

There's the feeling, the sense, that we have that if we can just learn enough, work hard enough, fight long enough, we can stave off the inevitable. We can't. We can postpone it. We can create time to build more memories we can cherish. But we cannot stop death. 

And then, we have to reinvent ourselves again, missing a crucial part of our souls. But maybe, maybe that's where the growth comes, because I am still here, still learning. And I hope, Aaron, you're proud of me. I don't want to do a lot of things, but I still try to do them. I'm trying to put myself in the places I know I should be so that I can. Often, it's a struggle, but I'm trying. I have faith that if I will continue, good will come, and those postive emotions, feelings, that are so very absent now will return.   

Yesterday I went to your grave. As I sat on the grass, I could smell spring, new life, maybe even a glimmer of hope. Easter is coming. Someday we'll be together again.  

Love you, my little leprechaun. 

My heart may be broken, but it will never stop loving.
~Jessica Garay

Friday, March 15, 2024

Jonny's Birthday

Hey, Aaron, guess what?

It's your Jonny's birthday. Do you remember playing the guitar with him before his mission? 

He titled it "Best Boy Band Ever."

And then when he came back, he did again and called it the "Boy Band Reunion."

I found it telling, and touching, that when each of the missionaries came back, there were big smiles, hugs, but no real tears until they embraced you. 

When you did go, I somehow felt it was important for me to be the one who called him to tell him. His heart broke. 

His second son will be born soon. I hope you're with him now. He's such a lucky baby to be coming to their family. Jonny is an amazing daddy, and Avenlee is an incredible mom. 

I guess it's the circle of life, although it sometimes seems like that circle got squashed, or broken, or something. I know it was your time, probably past your time, and while I'm grateful you stayed as long as you did, I am greedy, and I wanted more. 

Your brothers are simply amazing, kinda like you. I have been so blessed with amazing children. Thank you for being one of them.

Miss you, kiddo. 

Love you.

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt 

Wednesday, March 13, 2024

Me and Frodo

Nine months old
“Are you in pain, Frodo?' said Gandalf quietly as he rode by Frodo's side.
'Well, yes I am,' said Frodo. 'It is my shoulder. The wound aches, and the memory of darkness is heavy on me. It was a year ago today.'
'Alas! there are some wounds that cannot be wholly cured,' said Gandalf.
'I fear it may be so with mine,' said Frodo. 'There is no real going back. Though I may come to the Shire, it will not seem the same; for I shall not be the same. I am wounded with knife, sting, and tooth, and a long burden. Where shall I find rest?'
Gandalf did not answer.”

There are some wounds which do not heal. There are some experiences which change us fundamentally.

You did that, my son.

Oh, it's not necessarily a bad thing. I'm a much better person than I was before you came. And I think, I hope, I have learned even more since you left. Yet that ache, that hole in my soul, I don't think it will ever fully heal. I am wounded, not mortally, but significantly. And sometimes injuries last a lifetime. I hope that the stars will shine through those holes in me. It will have to be the stars, not the sun, because I don't think I look that different than I did before. And frankly, I don't feel "sunshiney." It's a softer light, a quieter light. Maybe even a dimmer light?

But maybe, maybe it is just enough to light the path for me, and perhaps others who are looking as well. Frodo did not return a conquering hero, not in the eyes of those of the Shire. That was Merry and Pippin. He was different, a bit strange. But he was allowed to go to Eressëa where he could find peace of mind. I hope I find that magical place, too. But until then, I think there will always be a part of me that hurts, that misses you, until I get to see you again. Today you would have been 13 3/4 years old; your nine month birthday. I love you so much, my little man.

“May it be a light to you in dark places, when all other lights go out.”
- J.R.R. Tolkien

Monday, March 11, 2024

Time Change

It's light outside now when I drive home, Aaron.

It helps, mostly. I hadn't ever realized that the time change in spring meant it stayed light later, and that extra daylight helps my mood quite a bit. 

I'm a bit restless, antsy, and I don't know why. I miss taking care of you. There's a lot of things I could fill my time with, but somehow I don't. Although last Friday I did come home from work and clip Sophie (she needed it so badly) and vacuum the house. Last night I made dinner for tonight after we ate. Tonight I ought to do something for tomorrow night, but maybe we'll just grill when I get home. 

The Memorial Tribute at Primary's is coming. We received the invitation today and I have 20 words to describe you in. I think I want to mostly use adjectives. I don't want to waste pronouns or articles on how we see you. But I'm also at a loss as to what to say. 

How do we convey all that you are, all that your life was, in 20 words? Oh, baby...

I volunteered at this the last two years, and I'm guessing I might again next year. But this year, I'm attending as a parent. I could see it coming. I knew it would be my turn. But oh, I hoped not. 

Daddy and I have been talking, and I think we were blessed with 22 more months that we were supposed to have to prepare us. I'm grateful for that preparation, for those whispers and nudges, but nothing could have really competely prepared us for what was coming. And in spite of those promptings, we were still caught off-guard. 

I drove past your grave again tonight on my way home. I like checking on you, but it hurt and I suspect it always will. 

I love you, little man. I hope you're running, playing, smiling. 

Miss you. 

"Death is never a clean break - some stardust always remains."
~Terri Guillemets


Sunday, March 10, 2024

Letting Your Van Go...

Hey Aaron, your van is gone. The last thing of yours that really needed to go, that would benefit someone else.

The child who benefits from the van came yesterday to pick it up. 

He's the same age you were when we got it. We'd gotten to the point where it was so hard to go out with you that we would actually have the dicussion about how important it was to go someplace as a family. And your van gave you (and us) the freedom to take you places. You would get giddy as I loaded you. One of the ways I knew you were struggling, declining, was that the last two years, you would sometimes fall asleep while I drove. Before you started neurostorming, you never slept in the car, regardless of how tired
you were. 

I'm so glad he can use it, the freedom he will now enjoy. The smile on his face was one I knew well. He was so excited! It looked so much like yours that it both brought joy and broke my heart at the same time. 

And then last night we went to "The Lamb of God", an amazing way to focus on the Savior.  Touching, heartbreaking, and cathartic in so many ways. I am so grateful for His sacrifice, for the knowledge that I will see you again. It's hard, so hard, but there are others who have survived even worse.

I took flowers over to your grave this morning, and it occured to me in looking at all the stones (and many are of children) that every single one is loved by someone, probably several someones, who have survived their loss. 

Vicarious resiliancy. I gather strength. I move forward. 

And yet, well, I don't know...

Your "things" are gone, at least the big ones. The closet upstairs is full of your blankets, clothes, stuffed animals and several other items. I haven't touched your go bag or your clipboard yet. I'm not ready, and that's okay. 

But while those are put away, and your big equipment is gone, your spirit lingers. It underlies pretty much everything. Where the hiss of the concentrator, the whoosh of the ventilator, and the beep of your pulse/ox used to sound, your room is now quiet. The candles turn on in the curio cabinet each night and your blanket is draped over the double rocker Grampa made for you. It's peaceful in there, neat, uncluttered. 

I miss the way it was, but at the same time, the way it is now I can feel you but I don't see you still lying in your bed like I did when I'd look in there while your bed was still there. (Does that make sense?) I still feel your love and the lessons I learned from you, but it's not (quite always) the same soul crushing ache as before. It's healing, comforting, accepting (at least at the moment). 

I miss you so much. As I held your nephew Barrett tonight I asked him if he knew you, if he remembered you, if you played together. I hope you had fun together. I hope you and he and Jonny and Avanlee's little one all spent time together. It hurts that you won't know them here. Do you remember when Linnaea was born and you told everyone at school about her?

Tonight we had everyone but Joseph and Sarah, and you, here for dinner to celebrate David's and Jonny's birthdays. It was loud, chaotic, and wonderful. Linnaea and Elend play with your toys, including the ones you were too weak to really use. It feeds my soul to see them loved. 

Somehow, life goes on. Still doesn't quite make sense that it does, but I guess that's okay. The point is, you were here, you lived, we have been so blessed. Thank you for coming to our home, to our family.

I love you.

"Oh, touch my hеart and bid it know
That, while in darkness herе
The Light is ever near
And Thou wilt make me whole again"
Rob Gardner - Lamb of God

Friday, March 8, 2024

Dear Aaron...

Dear Aaron,

It's Friday night.

Again.

I feel like in some ways I lost my innocence 11 weeks ago. 

Eleven weeks ago tonight I went to bed expecting to spend a few more nights on the chair that masquerades as a bed in the PICU, and then come home with you. 

Home to Alpine.

It honestly didn't even cross my mind when I went to sleep that you only had another two hours.

And somehow, somehow, I thought that I had already experienced grief, that in some way, having been through anticipatory grief it might lessen, or help me understand, or something, the loss of you.

But I was wrong. So, so, so wrong.

Nothing could have prepared me for this, for life without you. For my heart and lungs to go on when yours do not.

But still, you have left an incredible legacy, and it is so powerful!

Without you, I never would have gone back to school. Our family would be so different, and not in a good way. I never would be where I am, working, helping others.  Work went really well today! There were some pretty awesome things happening this week with clients. It's them, not me, but I wouldn't be in a position to help them find their way without your influence, your inspiration. 

I left the office on such a high! I was pumped, grateful, smiling. I thought, "This is going to be a good night!" 

And then about the time I hit the first light, the tears started. Again. There are a few nights I make it home without crying, but not many yet. I have faith that I'll get there. I have hope that you're watching over me, over us. 

I love you, Aaron. 

I hope you're happy, running, playing, singing, teasing the others. 

I miss you.

Love,
Mama

Grief is your emotions composing a goodbye letter to your loved one.

~Terri Guillemets