Heart Mommin’ Ain’t Easy

There are days when it feels like the natural evolution of becoming a heart mom is a never-ending march towards a lonely horizon. Even as Liam grows bigger and stronger, the work it takes to keeps things moving in a forward direction gets more and more difficult. Everything is purposeful and everything takes time and energy- finding the space to step away and connect with others fades into the background of a list of things to do a mile long. 

I’ve been told by other heart moms that there will come a day where my mom problems will so far outpace those of my friends that I will have to compartmentalize those issues to keep my relationships from dying and even while I resist that notion, I feel its pull. Does she really want to hear about my horrible experience with a nurse at our last pediatric appointment or how tough it is to manage my son’s needs alongside my complicated relationship with my birth mother? There comes a point when the sharing becomes dumping and then a friend turns into a burden. Right? 

Maybe. 

But maybe not- maybe I can find a balance between being a heart mom and wanting to just be a mom without losing my honesty or vulnerability. So here it is- here is the rough and dirty look at what it looks like to be a heart mom on a monthly, weekly, and daily basis. Perhaps if I can share what my life looks like here, I can find a way to keep it from eating my friendships whole.

Monthly:

1. RSV (Synagis) vaccine. The vaccine is only good for 1 month so Liam has to be taken to the pediatrician monthly to receive 1 dose - 2 injections per month for the length of the RSV season (Fall-Spring).
2. Cardiology with ECHO at Duke Children’s- this visit takes 3-4 hours including drive time, parking, and wait time. 
3. Spin the Wheel Specialty Visit- Jan = Ophthalmology appointment at Duke Children’s 
   

Weekly: In Home Therapies, 1 hour each

1. Physical Therapy- to help identify areas of development and focus for Liam such as core strength, muscle memory, etc... things like rolling over and tummy time are things we are working on.
2. Speech Therapy- to work towards getting Liam comfortable eating by mouth. Right now, we’re happy he’s interested in food and he no longer gags himself every time a spoon comes near his face. These are real wins for us and while he is making steady improvements, he will likely be 3 or 4 when we can remove the g-tube.
3. Occupational Therapy- first assessment next week, focusing on fine motor skills.

Daily:

1. Meds- twice daily. This includes delivery, precription refills, cleaning syringes for repeat use.
2. Guiding Liam through all the recommended activities laid out by the various therapists
3. Tracking those activities and working with the nanny to ensure no one activity gets all the attention or is forgotten... this one is hard.
4. Pulse ox check to ensure his shunt is still working.
5. Pumping every 3-4 hours and taking supplements/ adding more time to try and keep up with Liam’s increasing caloric needs by adding more volume. 

This list doesn’t include the paper work and follow up on CAP-C assistance which could make all the costs of therapies and in-home nannying a bit more bearable, but also takes months to work through. It also doesn’t include nanny payroll and management, grocery shopping, laundry, basic house cleaning, financial management, or meal planning/execution.  Oh yeah, and my full-time job. 

Balancing all this with another kid and a spouse can sometimes feel overwhelming. There’s never enough time in the day to get it all done. My life is my family right now- as are most moms my age with children- but where other families are like Bruce Banner (amazing but human), my family feels like The Hulk on steroids. How do I balance all the attention Liam needs with the knowledge that Eliza is just as much a child as he is? When do we switch over to a strict, heart-healthy diet so that food doesn’t become a point of contention in the house when Liam is eating alongside the rest of us? If we wait too long, will Eliza remember all the Chick-Fil-A we had in years past and become resentful? Where do I even start when trying to change our food habits? 

I’m not looking for answers to these questions from my friends or family, but all the extra mom thoughts drowns out my normal mom thoughts until it is all I can talk about and then I might as well be a green, hulking anger-monster because my ability to connect and communicate with others tanks hard. And this may be all in my head- this feeling alone even when I’m with people who genuinely want to know how I am. It’s not about those people- it’s my constant feeling of being too much, of not having the ability to take in as much as I dish out. I am searching for a way to be content in this season of upheaval. So far, no magic pills to be swallowed. 

This heart mom life is a minefield. I know that even in this, normal is relative and as Liam grows, our lives will adjust to fit this new realm we live in. I know there is joy to be found and there are moments in the day when I can glimpse it pushing its way through the chaos. Finding a way to drop the to-do list when it shows up is the tricky part.