Ellie had a cardiology follow up appointment last week and the news wasn’t great.
Through her echo-cardiogram, the doctor found she has developed a new condition that creates a force of blood flow in left side of her heart that he likened to putting your thumb over a garden hose.
It is not something that could have been prevented, it just happens sometimes – 10% of the time, actually. In Ellie’s case that includes two previous heart surgeries, this one, small abnormality will create a ripple effect of if-thens and complications.
We learned that this new diagnosis will change the steady course that we thought we saw ahead of us and will not allow us to put open-heart surgeries and long hospital stays behind us. The dream that Ben and I share of Ellie breathing hard, red-faced and running care-free with her brothers has been pushed out, maybe not totally out of reach but definitely further than we hoped.
I have debated writing a post about this because it’s not a neat, tidy story. We are playing a waiting game that does not include many answers. There are too many moving parts and too much history to start back at the beginning.
There is no way to try to piece together a road map of our literal million-dollar-baby’s life to make any of this make sense. There are too many details for even her own parents to remember completely.
One of my friends, a mom who I met while both of our cardiac kids were inpatient, posted a video on her Facebook last week and it has been gnawing at me ever since I watched it. The video, titled “Strong Moms of Sick Kids Mother’s Day Commercial” is only 90 seconds long and you can watch it for yourself here.
I felt like I was watching a flashback reel when I watched the video for the first time. These women are me. I have been each of those women in each of those scenarios and Ellie put me there. It is something that feels shameful, personal and is not easy to explain.
“You don’t know what it’s like for someone else unless you’ve been fishing out of the same boat,” my Uncle Drew said. Its not something that can be told, it has to be experienced, side-by-side, from the beginning.
I dread the hospital stay and the surgeries and the nights away from my family. Ellie is older and will likely not tolerate the 3 a.m. blood draws or being left alone in order for me to go downstairs to grab lunch like she did when she was an infant. It is going to be hard to keep her confined in bed when she just doesn’t understand. Like the rest of us, she has developed a taste for the freedom on the outside and she will put up a fight.
This disruption for Jack and new baby, Dragon Legends, is not fair. We have spent so much of Jack’s life fighting for Ellie’s and now we are bringing another baby in the mix. It feels selfish and irresponsible and I can’t help but hear the judgmental voice in my head saying, “You should have known better.”
Ben is busier at work. I expect he won’t be able to get away like he did before and he will also be taking care of the other two kids.
Ellie and I will be left behind in that hospital while the world continues to spin on the outside. As the temperature started to drop this week and we started to experience our first bit of fall, I realized that I had missed this last year because Ellie was inpatient and I wasn’t paying attention.
Towards the end of the video, you see the women pull it together, dry their tears and keep going. I am those women too. I have been that person pulling her luggage through the parking lot week after week while wiping her face. I am the one who smiles when she walks in the room to make sure her child doesn’t sense the worry that is consuming her. I know how bad it hurts your throat to silently scream in the shower so that no one in the next room can hear.
“What can I do about it?” That is usually the thought that causes me to dry it all up and move on. I can’t ask to speak to the manager or write a snarky Yelp review about my daughter’s health conditions. There is no one I can blame this on and no event that I can pinpoint as the thing that broke her heart.
Its frustrating and unfair and hard to understand, but sometimes it is just that – frustrating, unfair and hard to understand. I am not a pioneer. A lot of people are in situations that leave them feeling the same way. Frustrated, treated unfairly and unable to understand, fishing out of the same boat.
We don’t know how this chapter will end for Ellie, so this post can’t be tied into a bow. No matter where the finish line is or who is around when I cross it, I do not expect there to be some award for the most mountains or valleys crossed in one lifetime.
The reason I put this all out on paper is so that I will remember, years from now, how this felt and how we did get through it. I want to be able to remember that even when I feel tired and frustrated, just walking ahead towards the next thing is strong.