I Am (Not) That Mom: Raising a Kid with Cardiomyopathy


This article is one in a series about mothering in America published in collaboration with our sister organization, Strong Families.

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 who 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. Heartbeat… not fucking funny.

There was a boy today at day camp who 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 pain his father was feeling as he walked away, knowing that it was what needed to happen. I would be that parent in a heartbeat (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 for being so well adjusted and secure. Today I would trade that in for another Simon who hasn’t gotten used to dozens of doctors, nurses, therapists, friends, and family who 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 who stresses over leaving her crying son but then finds out at pickup that he mellowed and played well for the rest of the day. Shit, I’d even rather be that mom who gets the call an hour later that he’s not stopped crying and I need to come and get him. Instead I’m the mom who 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. I want to be that mom who 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 really want to be that mom.

I want to be the mom who got to work off her baby weight and was so frustrated that those last five pounds just wouldn’t come off. I would take that in a fucking heartbeat 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&Ms in her bag on the floor so that she didn’t starve but didn’t wake her son whose resting heart rate just dropped below 100 for the first time in weeks.

I want to be that mom who 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 who 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 my son was diagnosed with a chronic and possibly fatal heart condition.

That was the first day of me being this mom.

The one who savors each day.

Each breath.

Lives and laughs with greater appreciation for living and laughing.

Is so thankful for the outstanding little man who 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 shit about “unlearning” the grass is always greener. Because sometimes 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

heartbeat. 

That Mom Part 2 

One child receives a new heart and one child’s heart stops beating. That’s been the last 24 hours for us over here in Cardiomyopathy Village. 

And I am that mom. 

The one who runs into a door jam and curses loudly (hoping that Simon will not pick up motherf-er and repeat it all day at camp). The one who primes his tube feeding setup and then lets it run all over the counter because I forgot to put the extension end back into the bag as I left it to go get his meds and barf towel in place.

I am that mom. Not the mom who had to make the unthinkable decision of taking my son off life support and letting him go.

Except I have been that mom. It just ended differently. 

Jaime and I were those moms for about 48 hours. There was that weekend where we went down to Stanford to meet with another heart doctor to decide whether or not to list Simon for heart transplant. When Jaime and I decided not to, we assumed that it also meant that we would need to begin the process of saying goodbye to Simon. We spent the next 48 hours looking into hospice and palliative care. We talked about organ donation. We held and touched Simon in different ways. We walked, talked, ate, slept, and cried with Death. She was right there with us. 

I will never forget that morning as we shared our decision with Dr. Rosenfeld and asked if we should get started with palliative care. 

I will never forget hearing that, “Oh no, we have a few more things to try.” 

That “Oh no.” 

Oh. No. Two words can be said in so many ways. This was like a dismissal accompanied by a shrug of the shoulders, a gentle frown. Like something you might say to someone who offered you a second helping of a very rich dessert. “Oh no, I couldn’t eat another bite.” 

Except this was, “Oh no, you don’t have to say goodbye to your five month old son just yet.” 

And that was the turning point for us away from Death. Or her from us. I will never forget that time. Those 48+ hours where Jaime and I did what no parent should ever have to do or even think about. 

But Brooke and Lee did it. And their “oh no” was very different than ours. Lachlan has been let go and there are only so many of us (too many of us) who know or almost know what they are feeling. I am sitting with Brook and Lee, as close to them as I can get, through passageways that are only meant for the Divine. I am sitting here on my couch, as close to Australia as I can get. As close to understanding the death of a child as I can get. It’s pretty close. But I am this mom. Not that mom.

I dropped Simon off at day camp this morning. He kissed me goodbye with a viking hat on, one horn pointing up, the other horn pointing down. I will pick him up in one hour and forty minutes and we will go right to the potty to see if we can manage a poop in the toilet and not his diaper. I will give him Lasix via his G-tube at 2 p.m. and then at 5 p.m. we will head off to our therapeutic horseback riding session. Then we will have Shabbat dinner with dear friends, lighting candles, drinking wine (juice), and breaking bread. 

I am that mom. The mom who learns that her son is knocking down other kid’s block towers and not saying he’s sorry. Granted, he’s doing it because he’s developmentally delayed and more like a two-year-old than the three- or four-year olds he’s with at camp — but still I am that mom. That mom who, for the time being, is loving, touching, exasperated, surprised, amazed, pushed to the edge, delighted, and inspired by my son. 

This Cardiomyopathy… this thing… this life… this morning… it’s all so much. And for little Brooke who had her transplant and is not yet 24 hours postsurgery: Rock On! She is already asking to go to the playroom at the hospital and getting to spend hours snuggling in her parent’s laps.

I’m gonna take a breath right now and feel it all. You could do it too if you want.

It’s a lot, right? 

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