Heart Month

It's heart month, kiddo.

And for the first time in 14 years, yours is whole. 

Mine isn't, but yours is healed. What does it feel like to be free? To run and play and not be confined by a body that doesn't work the way people think it "should?" 

Most years I've tried to post regularly, at least on Facebook if not here on your blog. 

But this isn't most years. 

It's going to get really quiet tomorrow. Jonny and Avanlee and Elend have been here since just a few days after you went Home. Tomorrow they leave to visit with her family and then they'll be back for three days and leave for Saudi Arabia. 

It has been great having them here, having Elend here. He's so energetic and fun, and has so much life in him! My heart has needed this. 

It's not quite as sharp, at least all the time now. But grief is weird. I can be okay, maybe even just fine. I can talk about you, laugh about you, and then something smacks me upside the head and I'm devastated again. So I try to roll with it. On Sunday I think I teared up a couple times, but overall was okay. But Monday...  Well, Tuesday I went to work with swollen eyes. And then yesterday we got the notice that you had been unenrolled from the health insurance, but you "might be eligible for COBRA coverage; check with your employer." Um, don't think you need that. Don't think health insurance is a "thing" where you are. And that's good.

My brave warrior, you did what you needed to. Maybe part of my struggle right now is that two years ago, yesterday and today, were the first times you were so very critical, so close to leaving, and I remember telling you that you couldn't die in February. February is cold and dark and also when we first learned that you were coming with something "extra." And while I came to love and appreciate all the joy you brought with that extra love chromosome, at the time I wondered if I would ever feel hope again. 

You know what's crazy? When things went down two years ago, you were in the PICU overflow and they quickly moved you into the center of the main unit, not sure if you could even tolerate the stress of the transition. In December, you were admitted into the main part but in the back and shortly transferred to the overflow. To the Very. Same. Room you had been in that time.  When we moved in there in December, I quipped that it was a good thing you weren't actually critical 'cause I didn't want a repeat of the last time. Those are the only two times you've been in that specific room. And then when you were moved to the center of the unit, again, it was the same room too! It has made me wonder... 

Every other time you've been sick, Every. Single. Time, I've told you you had to keep going, keep living, get better. I wasn't ready. This time I didn't even really think it was a thing, or maybe deep down I knew. Maybe that was it. My soul recognized that you were tired, and I was starting to do "to" you instead of "for" you. I had always promised you that when that time came, I would let you go. And I guess I did.  

You ran your marathon, Aaron, and you even kept going beyond. I hope someday I can be half as brave and valiant as you. 

Miss you, my son.

Love you even more.

He died that day because his body had served its purpose. 

His soul had done what it came to do, 

learned what it came to learn, 

and then was free to leave. 

~Garth Stein

Decorating Helps Me

Years ago I tried to leave your Chirstmas tree up year round with the idea that I would decorate it seasonally. I think I "might" have made it through fall, maybe Halloween, but I know by the second year, it went months and months without changing, and I decided to stop.

I mean, you were here, and you were staying. 

And I'd gotten to the point where I was planning for life and not death. 

I expected you to be here, pretty much forever, mostly...

I mean, I knew, sorta, kinda, that you wouldn't be, but still... 

And now you're not. 

So yesterday I stopped and bought Valentine's decorations for your grave. (How is that even a sentence?)

It helps me, really. I actually bought for Valentines, St. Patricks, and Easter. And a couple of solar lights, too.

I had stopped at the cemetery a week or so ago at night and it was soooo dark. I mean, it is a cemetery, but still. I had to use a flashlight to find you. That hurt. 

This morning I went by before going to work and put your things out. Tonight I drove by again and there it was, shining in the night. 

It does my mama heart so much good to be able to find you in the dark. 

Life seems so dark without you, having that little bit of light gives me hope. I know, in both my heart and mind that you're okay, you're more than okay. You are free, happy, able to run and shout and sing. 

You aren't there, not really. That's just your earthly shell, but I love that earthly shell as well. So I will tend your grave because I can no longer tend to you. 

And we're still working on your permanent marker. 

“Those we love and lose are always connected by heartstrings into infinity.”

— Terri Guillemets

Seems Like a Bad Dream

While on my lunch break today my phone rang.

I still always answer it if I can, so I did.

It was the pharmacy for new inhaled antibiotic that we'd been fighting for.

They asked for you...

Oh, boy...

I softly told them that you had passed away just before Christmas and we no longer needed it. I think she was a little shocked, said she was sorry, and then said, "have a good day." (Pretty sure it was just a habitual response, not intentional.)

I don't miss all those phone calls, multiple each month, to get your medicine, food, diapers, and all your trach supplies. But I miss you, and if making those calls meant you were still here, I'd do it in a heartbeat.

Last spring I fielded a call while with some of my classmates. When I finished, one said I needed a case manager. I quipped back, "I am his case manager."  She laughed and said, "I know, but he really needs someone so you don't have to." Frankly, she's a pretty awesome person and was just catching a glimpse of what it was like. You did need a case manager, and I was offered a nurse manager, but honestly, then I would have had yet another person to follow up on to make sure the ball didn't get dropped. 

I knew I would get things done, and I did.  You had four different pharmacies. We were trying to add a fifth. I called one number for food and feeding supplies, another for diapers, and yet another for oxygen, trach and vent supplies. And that was just for your supplies. It didn't take into account any of your doctors, and there were several of them.

But you were worth it, every minute! Every frustrating, long encounter as I answered the same questions (for the same people) over and over. 

And I don't regret a minute of the energy and time I spent for you. 

Tonight I stopped and got some things for your gravesite. I'm hoping to get out of here early enough tomorrow to take the Valentine ones over before I go to work. 

It's dreary right now, rainy, dark, cloudy. It matches my mood, I'm afraid, almost like the sky is crying with me. 

Sometimes this feels like a dream, a bad one. And sometimes your life feels like a dream that I'm tryinig to get back to. 

Either way, it's hard to reconcile my before and after. Something fundamentally changed in me when your heart stopped.  And I don't know how to fix it. 

Your hospital gown still smells like you.

“I had no idea that you would be gone in a blink of an eye –
I miss you with all of my heart.”

- Unknown

Memory Lane

Hey, Aaron, I've been going through old posts and reliving memories of you. I'm so glad I wrote things down, and I wish I'd done more.  A few months ago I realized you were almost 5000 days old and I marked it on the calendar so we could celebrate. That day is coming up, and I'm not quite sure how to face it. 

But today I remembered you...

I remembered when you got your Tobii and you talked and talked and talked about everything! You used it to tell a classmate "good job!" after a presentation. You told the principal that your test was boring, and your teacher was boring! The day after you stayed up until 4 am playing, you announced you were "tired and grumpy." When Linnaea was born, you navigated away from what you were supposed to be presenting to tell everyone, "Baby girl! Baby girl! We have baby girl!!" Your teacher suggested that we get you a t-shirt that said, "Moving my seat won't help, I talk to EVERYONE!" 

But it wasn't just talking. You understood. When I was talking with someone about which of your siblings would want to learn to change your trach, you just listened, until we got to Michael. You started nodding your head. When I asked you, "So do you think Michael wants to change your trach?" you nodded more and more. He wasn't around so I asked him later and his response was "of course I want to!" 

You knew your brothers well. You knew that while they all would have done anything for you, you also were aware that some were more comfortable with medical issues than others. 

Of course, when Michael did try to change your trach, you were a nut! Instead of lying still with your chin up high like you always did, as soon as he pulled the trach out you started doing crunches, completely hiding the stoma he needed access to. Silly boy. You loved to tease him, and he loved to tease you. I love the bond you have. 

But in reliving those memories, I could also see the beginning of the end. I laugh and smile at the earlier memories, but the last two years are much more difficult, painful, poignant. 

My brave boy. 

You were so strong. I could see the decline, the struggle, but not nearly as well as I can now, looking back. 

I remember feeling like your 12th birthday might be your last.  It wasn't, but it was the last we could hold a party for. And unlike any since your first, you were really tired and slept quite a bit. Your 13th birthday you were in the hospital, so sick. We had almost lost you just a few days earlier. 

Your body was slowing down; it was tired. Your big wonderful heart was struggling. Your digestive system wouldn't work right. Before that, we used to joke that you had a cast iron stomach. You loved a full tummy and moved your food right on through. But not the last two years.  

In February 2022 when you were so, so sick, when you came right to the brink of leaving us, it damaged you. Your brain certainly took a hit, but so did your heart, your lungs, pretty much everything. And yet, you soldiered on. 

My sweet boy, thank you, thank you for everything you gave, everything you taught, just everything. Thank you for enduring, for fighting, for staying as long as you did. 

Miss you, miss you so much. 

Love you even more...

“It's my heart that is tired.
A thirteen-year-old heart shouldn't feel like this.”

― Markus Zusak

Hope

Your room looks so big now. Your bed went to a little girl who needs it. 

Daddy and I scrubbed food off the walls, and the ceiling. I'm not quite sure how it got up there, but I suspect it was one time when we vented your tummy and forgot to cover the syringe. 

Linnaea just came up stairs and when she came into your room, she asked "Where are we?!?" I told her it was your room but you didn't need all the things anymore because you were with Heavenly Father and Jesus now. And that seemed to make total sense to her.  It makes sense in my brain, but my heart is still struggling.   

I look at the picture now and see the shadow of the two butterflies that still hang from your ceiling just at the top. The picture another T18 family gave me that says, "I can do hard things." (I need that reminder, this is hard!) The blanket Holli made for SuperAaron, with butterflies on the back of it, the one the Activity Days girls made many years ago to represent the Comforter, and the Minion on your cabinet. Daddy and I both laughed at that one. It doesn't look like you, per se, but it certainly conveys your spirit! 

And the pink sticky that says "Ambu bag inside." That one isn't needed anymore, but somehow I haven't thrown it away. 

I listed your van for sale today. We don't need it and someone else will. I hope it goes to someone who gets as much joy as you did. Cleaning it out actually brought a smile to my face as I remembered how wonderful it was to take you places, to see you light up and laugh as we'd go. And now you don't need those helps anymore. 

I was at the hospital again today for the open house. I saw the infusion rooms with the patio just outside and remembered how we advocated for that so that children wouldn't have to be confined to the rooms,  and the rooms themselves have big wide windows so even inside they can have sunlight. The NICU rooms have mini fridges for Mom's to put their breast milk in. And the trauma rooms have x-ray built in! Such a blessing for both the children and the staff.  

While there, I picked up a small blue stuffie. I named it "Hope." 

Hope for the children and families, hope for the staff, and hope that I can continue your legacy of hope. 

Hope rises like a phoenix from the ashes of shattered dreams. 

~S.A. Sachs

Ribbon Cutting Time

Hey Aaron,

Today was the ribbon cutting at "your" hospital. Tomorrow are open house tours and then it starts serving children on February 12. 

You're not there, but yet you are. 

One of the architects stopped me today asking if I remembered him. He laughed as he recalled the sketch plans, and then the blueprints and how we would all discuss different ways to move things around. 

And now it's a reality.

He teared up when I explained that you wouldn't be coming after all. 

One of the speakers mentioned how at Christmas their family had done a "little" thing. They went to Primary's and distributed Minky blankets. Maybe it was little to them, I don't know. But I was given a beautiful white blanket mid-day on the 22nd and went to sleep cuddled under it.

Until I was woke at midnight, and well, you know how the rest goes. You went too. And that blanket came home and helped ground me, helped my own body not fly apart, kept me in the here and now (even though I really wanted to be in the past, where you were still alive). 

So to me, not a little thing at all. 

It is such an amazing building, Aaron, and I can see your fingerprints everywhere. It will bless the lives of countless children and their families. You bless the lives of all those people, even though they never knew you. 

I'm still on the Family Advisory Council and now serving on the exec team. The other two ladies I get to work with are amazing, and I'm so grateful to serve with them. And my service is directly a result of you. Without you, I would never be part of this, would never have helped with the hospital design, would not have gone back to school. I would not be the person I am today. 

Tonight a dear friend came and gave me a massage. I needed this so badly. I mean, I kinda knew, but as she started in on my shoulders, I realized the knots that were there! What a blessing she is...

What a blessing you are, too.

“And if I go, whilst you’re still here…

know that I live on,

vibrating to a different measure behind a thin veil…. ”     

~ Emily Dickinson

More and More Change...

Hey Aaron,

It wasn't coming home that I lost it tonight, it was after I got here.

I managed to keep myself distracted on the trip home, but then once I got here I needed to get things cleared out.

Bless Jonny and Avanlee; they did a lot in getting your bed taken down and all the toys that still were hanging. The lights, the stethoscopes, all of it. 

I moved your stuffed animals upstairs to the closet where they can stay until I figure out what I'm doing with them. 

I washed your sheets and your blanket, finally. But not the hospital gown. I don't know that I'll ever wash that. But your blanket was needing to be washed even before you left. So I did, and I cried. 

Jonny was in there and just put his arms around me, and when I said I missed you so much, he said, "me, too."

"Me, too." Those two little words held so much for me. 

Somehow time is marching on. And I guess that's how it's supposed to be. It's February 1st. We've now had a full calendar month that you were not here for; the first month in which you were not alive for any of it. Sometimes, sometimes I wish time could just pause and the world could recognize that an amazing, wonderful, beautiful soul is no longer here.

Tomorrow is the ribbon cutting for the new hospital. I wish you were here to be with me there. 

I love you. 

That grief will go on, but the love goes on too.

~Connie Sigler