No Wonder Woman Here

The day before our second discharge-when we were initially scheduled to leave, I walked into the unit with a car seat and a stroller. Liam was screaming in his bed with a nurse about to attempt a blood draw for the second time. I asked the nurse why they needed a blood sample on discharge day and she let me know he spiked a fever a few hours before- automatically barring us from our planned jail-break. The disappointment and frustration at not being informed earlier was profound. In tandem with a poor needle-stick (just one of the many failed attempts throughout the 12 day stay), I was beyond angry- I was ready to throat punch someone.

I sat with Liam in my arms and soaked him in my tears. They were tears of disappointment for Liam and our family’s plan to be all together that day at home, but there were also of tears of self-pity mixed in. I cried because I was stir crazy. I cried because I just wanted to be a normal mom with a healthy baby. You won’t see that kind of cry face on a super hero poster. 

People like to tell me how strong I am. They like to commend me for my courage, but the truth is I am weak and fearful most of the time. I worry I will wake up and Liam won’t be breathing. I worry that we’ll miss signs and take him to the hospital just a little too late. The problem with these little encouragements that seem to flow so quickly from the mouths of friends and acquaintances is they leave no room for honesty, for a recognition that weakness is a daily symptom of being a Heart Mom. They put me on a pedestal upon which I can never hope to truly stand. Pedestals are isolating places- they signify perfect ability: both capable and calm all the time. How far that is from the truth!

After a second admission and discharge, the weariness has seeped into my bones. Caring for a 2 month old on a normal day is exhausting, but caring for a baby with HLHS is a whole new level of tired. 

Sleep is elusive- no new news there. On top of meds, pulse ox, and g-tube feeds, there is a home nurse that checks in every week and developmental therapies and assessments to work through each day. I am constantly watching for any signs of labored breathing or color changes that would point to a low oxygen saturation. It’s a chore to get up every morning and start the day knowing when I lay down again that my sleep will be both interrupted and brief. The heart defect is not what makes things difficult- it’s all the little things that ripple from it. Death by a thousand cuts, as the saying goes. 

All that being said, these last few days at home have been wonderful- no cold, sterile rooms, no worries about whether or not a nurse will hear and comfort Liam when he cries after I’ve left for the evening, and no cafeteria gruel masquerading as food to mindlessly chew and swallow, but there are still battles to fight and I am reminded each day of how little I am equipped for this massive undertaking. Looming large on the horizon is the next surgery in a matter of weeks, and the knowledge that all of this will be repeated. 

The good news (for me, anyway) is that it’s actually ok that I’m not courageous or strong. It’s a pedestal on which I choose not to stand and that is incredibly freeing. To pretend to be either of those is a charade and the effort to put on a show is not on my list of priorities. The simple fact is every day I put one foot in front of the other. Sometimes I do it with a good attitude and sometimes I don’t. It’s not heroism or bravery, it’s just good old fashioned survival. 

The irony of this shirt is not lost on me, but he sure does look handsome.