Half the Heart Mom I Used to Be

Heart month is coming to an end and I totally slacked off spreading CHD awareness. No pun intended, but my heart wasn’t in it this year for some reason. Maybe it’s the melancholy I have been experiencing since my father’s passing, or just the fact that we have been blessed with a relatively ‘normal’ life in spite of what has been handed to us. Either way, there is no excuse for me not doing my part or maintaining my commitment to congenital heart disease.

A few things have happened this year that were completely unanticipated. In October, my father became sick and the time I thought I had with him was taken away in a flash. This January, I was able to land an incredible contract in healthcare doing what I love, but now I have less time to focus on my prior commitments. This past fall, I finally answered the call that has been inside of me since I first rolled out a yoga mat 15 years ago and started yoga teacher training. November was when Izzie had her fenestration closed but lately we have had a few vomiting spells to keep us on our toes.

You could say that I am a little busy. It’s a good busy, but I am disappointed that I haven’t been on top of things like I wanted to be. Some days my heart feels so heavy. I keep forgetting that it will take time for me to embrace this grief. When the negativity does enter my space, I send it back out to the Universe from my yoga mat. Life is too short to worry about things that are completely out of my control. If anything, life has taught me this over and over again.

I do worry about Izzie’s future. Just because she has had incredible numbers since her cath doesn’t mean that I am able to let go completely. She still has half of a heart, her circulation is still not ideal and she will still need a transplant when her function decreases considerably. God willing that won’t be for a long time. We have been encouraged by the stem cell research that is coming out of the Mayo Clinic and Boston Children’s. Our hope is that will be an option for us when the time comes.

This year I was not the Heart Mom I have been in the past, with lots of facts about congenital heart disease and pics of Izzie recovering from her surgeries. This year, I wanted to focus on what was in front of me – my family and my relationships. I want to help Addie adjust to life with a chronically ill sibling. She needs to feel just as loved as her sister and I know I fall short of that. My attention is always on the youngest- her coloring, her sats, has she drank enough, or is she coming down with something. No wonder Addie feels left out. There isn’t a lot of resources out there for siblings and that is something I hope to change. At least in my house anyway.

Until then, I will keep my focus on what I can manage instead of what I would like to.

 

 

 

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