That Mom

Sometimes I want to be that mom. Not the mom that wakes up and first thing disconnects a tube from her son's belly that just administered medication.

Sometimes I'm tired of it. I'm tired of sitting and pumping food and medications into my son while we watch Monsters Inc. for the 85th time so that he'll be still and less likely to throw up that food and medication (all over the couch, himself, the dog and/or me).

I want to be that mom. The mom that stresses over the fact there was a half eaten plate of scrambled eggs instead of a clean one. The mom that sighs heavily over cleaning up said scrambled eggs off the floor. I want to be the mom that doesn't have to clear seven syringes off the table every morning but maybe a sippy cup instead.

I would be that mom in a heartbeat.  That's not funny. Heart beat.... Not fucking funny.

There was a boy today at day camp that was just losing his shit. His Dad had dropped him off and he was NOT happy about it. Huge tears rolling down red cheeks. Sniffling. Hiccuping with the sad desperation of separation.
I could see the gut wrenching his father was feeling as he walked away knowing that it was what needed to happen.
I would be that parent in a heart beat (fucking heartbeats).

Instead I get a quick kiss without eye contact because the Barn is up and you can actually climb inside of it (once you've kissed Mommy goodbye.)

I'm not proud of my son who is so well adjusted and secure. Today I would trade that in for another Simon that hasn't gotten used to dozens of doctors, nurses, therapists, friends and family that have come to take care of him, wish him well, make him do exercises, take his blood, work on speech, listen to his heart, distract him.

I would like to be that mom. The mom that stresses over leaving her crying son but then finds out at pick up that he mellowed and played well for the rest of the day. Shit, I'd even rather be that mom that gets the call an hour later that he's not stopped crying and could I come and get him.

Instead I'm the mom that walks into the room,  drops his feeding pump bag off in the fridge and checks his diaper stash in his cubby because potty training is so far off for this three year old due to diuretics and stool softeners and language delays.

Today I want to be that mom. The one who's kid will only eat white foods. The one whose kid is growing out of their shoes so fast that they can actually hear the cash register at Foot Locker ringing in their head.
The mom whose kid throws fits in the super market because they can't have that box of  Kix because we have a whole box of Trader Joe's Gorilla Munch in the house already.

I want to be that mom, whose kid is so shy that they will only do the Koala bear cling to my legs when we run into an old friend on the street.

I want to be that mom that has to work at keeping up with their kid, shouting a loud "Simon, STOP!" as they head off toward the edge of the sidewalk.

I want to be that mom. Today I really want to be that mom.

I want to be the mom that got to work off her baby weight and was so frustrated that those last 5 pounds just wouldn't come off.  I would take that in a fucking heart beat instead of being the new mom sitting in the hospital chair for 15 hours a day holding her months old baby and wondering how she could reach the Peanut M&M's that were in her bag on the floor so that she didn't starve but didn't wake her son who's resting heart rate just dropped below 100 for the first time in weeks .

I want to be that mom that had to pump her breast milk at work while staring at a picture of her kid for 'let down'.

I want to be that mom that didn't stop offering the boob until her kid finally had to say "I'm done Mother, now can you please let me finish my algebra homework."

Three years ago today I stopped getting to even think about not being that mom. Three years ago today I woke up knowing that I was never going to get to be that mom because yesterday, in the late afternoon, after a 'funny' start to the day, my son was diagnosed with a chronic and possibly fatal heart condition.

This was the first day of me being this mom.
The one that savors each day.
Each breath.
Lives and laughs with greater appreciation for living and laughing.
Is so thankful for the outstanding little man that makes it so much easier than it could be.
Feels the presence of the divine so much more.
And understands the power of family, friends, and community on a cellular level.

And more evolved shit like that.

Today...I kinda just want to say Fuck Her. Fuck that 'unlearning' the grass is always greener shit. It is. Sometime the grass really is greener and doesn't need as much mowing or weeding or all natural for your child/pet fertilizer.

Today I would be that mom. I would.

In

a

fucking

heart beat.





And oh yeah, it was amazing to celebrate yesterday and how far we've come. Blah Blah Blah. Fuckity fuck fucking evolved shit gratitude and all that.

3rd Anniversary

Today marked the third anniversary of Simon getting sick.  On this day 3 years ago, Simon was diagnosed and admitted to the hospital and the next day was on life support.  It's hard to wrap my brain around it.  How could it be that long ago and how could it have only been three years ago?

For me (Jaime), today felt pretty...average. I think that's saying a lot.  I didn't have random crying, big feelings, acute memories of the hospital.  It was more hustle bustle to get our cupcakes together so we could go to there to say thank you to the ICU staff.

It's a little staggering to think how much we've adjusted in 3 years.

Simon got to say hi to some old friends, including his primary evening nurse, Carol.  They were thrilled to see him and he charmed them all, as is his way.

Mama, Simon and Carol

Reunited and it feels so good (definitely better than when we were inpatient!)

Mommy, Simon and Carol

 Simon with his "scuba mask" on his head aka the face masks they give out in the ICU to keep cooties from spreading, that he requested.  

If I never see one of those damn masks after our need for them last winter when we were in for pneumonia, it will be too soon.  Simon, however, was loving them.  Here he is maxin' and relaxin' in an infusion chair in the hallway. We practically bathed him in Lysol when we got home.     

It was a very sweet, very mellow, uneventful, non-traumatic day marking the hardest day of our lives.  Just the way I like it.