Cha-cha?

Dear Aaron,

Step forward, step back. I always prefered quickstep to cha-cha. This has been (and continues to be) hard!

No, not hard like you did it. But again, I think I'm a wimp, and it's hard for me. 

I did make it home on Tuesday, the last time I wrote you, but I was a weak as a newborn kitten. I couldn't walk from one end of the house to the other without sitting down to rest. And then standing up again was another battle. Two to three naps (long ones) per day. I was finally able to shower on Thursday with the help of a shower chair but made sure someone knew I was in the shower so they could help if I ran into trouble. I didn't, but I also went right back to bed after. 

I was however, doing a little better every day. I've never been sick before where I could tell a difference from day to day. That continued until about Tuesday. Then my (left) shoulder hurt. Wednesday morning I woke up with a left-sided backache that took my breath (yeah, that I'm still struggling with) away. Sigh...

I had quit taking Tylenol and ibuprofen on Sunday. This was totally new. Hauled myself to the doctor who ordered a CT scan stat, and there was good and not as good news. Pneumonia has largely (but not completely) resolved. And I have a small subpulmonic effusion. 

Why didn't I remember that all those times you struggled, they'd turn you so your "bad side" was up? Why do I always lay on my left side? Where is the residual pneumonia and effusion? Yep, left side. 

So back on pain meds, using a heating pad, watching my sats (which are generally fine) and feeling crummy and exhausted all over again. Filed for short-term disability and still not back to work. Hoping that when the pain is under control, I can start doing some telehealth sessions from home, but we'll see. 

I can tell I'm sick because I'm not leaving the house much and I'm not going stir crazy.

How did you do this over and over and over? 

On a positive side (I guess?) I'm actually not missing you as much as usual. I dream about you frequently. Apparently, vivid dreams and nightmares can be a side effect of sepsis. I don't think I've had nightmares, maybe because I've already lived one. But I have incredibly realistic dreams of being with you.  

A few nights ago, I dreamed you were dancing on my lap in my arms, and then snuggled in close and fell asleep. You would have been about two or three. Then the next night, I dreamed I was trying to put together your vent circuit. I recognized that it had been a while, but muscle memory took over and I got it, and you laughed at me from your wheelchair. 

Sometimes I begin to wonder if I'm napping to spend time with you as much as I'm napping to recover. 

Oh, I miss you!! 

Please keep coming to see me in my dreams...

Love,
Mama

"I think the truly natural things are dreams, which nature can’t touch with decay."

– Bob Dylan 

My Turn?

Okay Kiddo,

You know, I had so much love and admiration for you and your attitude and endurance. 

I now have even more, and my experience pales in comparison to your easiest admits.

You handled rough times with so much more grace than I have.

Got sick just over a week ago with a minor cold. It really wasn't a big deal and I started getting better about day 4. 

Day 5? Not so much. 

Day 6 (Saturday) was worse. My chest felt tight, I had a low grade fever and a nasty, gross cough so off to Urgent Care I went. X-rays (really clean) and exam and the diagnosis was viral infection, probably RSV, and I was given a prescription for two cough meds. 

I managed to drag myself home and collapse in bed for a while. I only ate two tiny bites of dinner and went back to bed. I felt absolutely lousy and my bedside table looked like a pharmacist's counter.

By 10 pm my cough turned bloody and I continued with that every 15-20 minutes through the night. When I also started getting sick to my stomach (I know I was swallowing some of the blood) and had major chills and cold sweats, I woke Daddy up and told him I needed to go to the hospital.

Well, they got me back pretty quick (not as quick as you, I wasn't that bad) and ran tests and labs. Labs were totally wonky and CT showed bilateral lower pneunomias. Plus I just could not keep my blood pressures up. Yay for sepsis?? I spent the night in the ICU to stabilize my blood pressures and now I'm on the floor. 

The good news is they caught it really early. The bad news is I'm a much better medical parent than patient.

Yuck. I hate being weak, being stuck in bed, the exhaustion that hits so hard just getting up (with help) to go to the bathroom. And the interminable coughing is driving me nuts!

I also learned I find it easier to advocate for others than myself, and it's easier if you aren't tied to tubes/wires in a bed, and I can do it anyway. 

Fingers crossed that I get to go home today but I'm under no illusions that I'm all better. But I guess you know what that's like, don't you? 

I miss you, kiddo. Thank you for all you put up with so we could have you part of our lives for so long.

Love you so much.

Love,
Mama

"It is not the mountain we conquer but ourselves."

~Edmund Hillary 

Wishing on Stars

Aaron's Make a Wish star

Dear Aaron,

It's happening again, without warning. 

The waves come: relentless, overwhelming, drowning, shattering.

Last week I read a book with a client, not a new book. I read it years ago and again recently. It's a middle-grades book about a family whose mom has died and that's not even the focus of the story. But the younger boy discovers that his baseball mitt will pull meteorites from the sky. He is out in the middle of the field, in the middle of the night, wishing on the falling stars. 

"They're falling for a reason, and I know why. To make the wish come true. To bring Mom back." (Tesla's Attic. p 164)

And I actually got through that just fine. A twinge, but no more. I was at work and I compartmentalize really well, kinda have to. And Danny's Mom doesn't come back.

Then Saturday, Linnaea brought me "Ten Wishing Stars" a bedtime countdown book for toddlers. Each sheep makes a different wish and goes to sleep with their dreams coming true... 

And oh, I wanted to wish upon a star that would make mine come true.  I could feel Danny's anguish as he pulled chunk after chunk of burning metal and rock from the sky, wishing and hoping and praying that his mom would come back. And if I thought there was a way to reverse time, go back to when you were still here, I'd be out in the middle of a field right now doing the same thing. 

I ache so bad right now. Sometimes the pain is just a dull ache in my bones, in my soul, barely there, easily brushed aside. And sometimes a giant fist grabs my own heart and lungs and squeezes until I can hardly breathe. 

Sometimes you seem like a dream, a ghost of a lifetime, hidden in the mists. And sometimes as I wake in the morning, I hear the echoes of your machines and forget you're not here anymore.  Only silence.

Two more days until the anniversary of that ultrasound, the one where we learned so much about your challenges. Another "before and after." Before I had no idea, couldn't even imagine what was coming.  After, some of my innocence had been ripped away. But it only foreshadowed what would come 13 years later.

Oh, I miss you so much.

And even though I know wishing on a star won't bring you back, and for your sake I guess I wouldn't want to, I still wish... 

You were done. Your spirit so strong, your body so frail. It held on longer than we had any right to expect or hope for. 

I love you.

Love,
Mama

"Love doth make stars to shine

In the gray, grieving skies of care."

~Julia Cooley Altrocchi 

My Funny Valentine

Dear Aaron,

This is weird.

Or maybe I'm weird. (Okay, yeah, let's go with that one. It's not new.)

I don't know. I alternate between lots of energy and gotta keep moving; and what would happen if I just stayed in bed, or went for a drive instead of going to work and didn't tell anyone. 

I try to stay busy; I try to stay focused. Or maybe just I'm just avoiding.  I mean, I do go to work and I think I do okay there. Some days are better than others. I even mopped the floors yesterday. I try to be a good mom to adult kids. I mean, you're the only one who's not an adult, and you don't really need me anymore. They don't either, not really, but I do what I can to make their lives easier.

But I still need you.

How is that fair??  

Your Valentines are out at the cemetery (there's been some drama with that, but I'm not ready to get into it) and they look beautiful. But still, stark and somehow sterile, at least in comparison to the joy you brought to life. 

It's dark and I miss you. Nights are still the hardest and I suspect they always will be. 

I miss you, my funny Valentine. 

Love, 
Mama

“A beautiful echo whispers into grief’s chill…you loved. you loved. you loved.”

~ Angie Weiland-Crosby