I haven’t wanted to talk about being a heart mom in a long time. It feels too hard. For a long time I have had to live with the notion that Elliott will never “outgrow” his diagnosis. He is “repaired” but he will never cleared from a cardiologist’s care. In February we were told he needed to have a Cardiac MRI and the likelihood of needing surgery again was becoming more and more apparent. I sloughed off my nerves for a while, because it took forever to get his MRI scheduled. Because he needed to be sedated, he couldn’t be sick, so it felt pointless to follow up on the scheduling when he had one cold after another. In May, I started to pull myself up by my bootstraps again and after multiple phone calls, we finally scheduled the procedure in August. The weeks leading up to the MRI I felt like a bundle of nerves; not for the MRI itself (it went fine, by the way) but for what it meant afterward. For weeks I wanted to cry in the bathroom (at work and at home) for the simple fact that it still feels hard to swallow his diagnosis, even after nearly three years.
As Elliott’s after-procedure follow up drew closer, I was able to reconcile peace with it all again. Elliott is a strong-willed kid with lots of energy. As much as it pains me to think about surgery, I know it is what’s best for him. It gives him a great big chance at becoming who he was meant to be. He has so much potential and life in him; surgery is the means to keeping his diagnosis from limiting him. Surgery means hope for Elliott. Surgery means life.
So now, we wait in limbo. Elliott’s MRI results were “inconclusive.” His overall heart function had declined from last time, but it’s not in a worrisome range yet. His stenosis and valve regurgitation was much better than we anticipated, but there was still a minor decline in function. His cardiologist is going back to get more information on his procedure, and since his function is okay for now, we are waiting. Surgery is still imminent, but this gives us time to process it and gives Elliott time to grow. He is eating a ton right now and is in a growth spurt. His energy levels are off the charts (seriously, I am tired)! We are proud of the kid he is turning into.
There has been so many other things I have been projecting my focus on that it's been hard for me to delve into the things I love. The blog, artwork & sewing, always takes a back seat. Countless times I have sat down to paint at my table and gotten overwhelmed by the mess and the suppression of my creative juices that it feels much easier to go wash the dishes or something. Or veg on the couch and scroll through Instagram. I then feel guilty that I am not living up to my expectations in life. But I've got to be real with myself: I am not wasting my life if I don't meet my expectation. I am wasting my life if I don't practice gratefulness and allow myself to feel joy. So that's what I have been working on these last few months, really. Practicing gratefulness and joy. My heart still feels heavy with lack of contentment sometimes but the truth is every human on this planet is a constant work in progress. At least that is what I am telling myself, and it forces me to cut myself some slack.
So, there we are. I have been writing and re-writing this post for weeks because there are just so many things to share, but my heart has gotten caught in the busyness of it all. Hopefully I can share some more of the good soon. The home projects, the kids and their adorable toddler-ness, and much. more. Have a great rest of the week, friends!