Three of the many unpopular decisions I have made recently

I feel like I am in the midst of a storm and nothing feels anchored in my life. In the past few months I have found myself struggling to get through a 24 hour period without feelings of panic. Some days are more successful than others. Between being unemployed and trying to figure out the direction I want my professional life to go in, I have been very depressed. This morning I decided to indulge my desire to sleep in and of course, my mind wakes up before my body does. It begins to think about things like Izzie ice skating, what I want to do with the rest of my life, and whether or not I can afford tickets to a fellow heart mom’s fundraiser. After 45 minutes of this, I get up and made myself a cup of coffee. Enough with the head spins. Let’s get this out.

1. Unpopular decision #1: I don’t want to enter my daughter into a contest showing the world her zipper by having her shirtless wearing a cape. 

Mended Little Hearts has begun their Rock Your Scar contest as a way to spread awareness for Congenital Heart Disease and to empower the CHDers who may have issues with their scars.  After much thought, I have decided not to enter my daughter in this contest. Right now, she thinks her scar is a big boo-boo and as much as Chris and I try to explain how awesome that boo-boo is, she knows it makes her different. All the more reason for her to show it off, you might say. No, not really. I don’t feel comfortable having her shirt off, wrapping a cape around her shoulders and taking her picture. She isn’t into her scar right now and if I want her to feel secure about her body I need to leave it alone. She trusts me. I am the one she calls out for when she needs to feel safe. I want her to feel like she has some control over her body and what happens to it, especially since for the first three years of her life people have been messing with it.

I also don’t want to ask people to vote for her. Already I have seen some of my heart friends posting their children’s pictures, and my gut reaction is that it is an unhealthy competition for me. I know where my head is at right now and yes, I will take it personally if people don’t vote for my Izzie; as if her scar and what she went through didn’t make her a winner. I don’t want to pit my daughter against others. Her scar and how she got it has given her a common bond with these children. Her health and how well she is doing makes her stand out enough as it is.

Here’s another reason why I don’t want to have her participate in this. Her sister has asked if she can have a heart defect so she can be in a commercial or have her picture in a calendar like Izzie. I don’t want to hurt Addie by giving Izzie another spotlight while she sits in the shadows wondering why her healthy heart isn’t broken. Sometimes we forget the impact this has on Addie, and I know she feels less important.

2. Unpopular decision #2: I want to treat Izzie like she is a normal preschooler so she doesn’t become The Girl With Half a Heart in her school.

I had to fight the overwhelming desire to let the instructors at the Ice Skating rink know that Izzie has a heart defect. I didn’t want them looking at her differently, or treating her differently, but what if she gets frostbite because she keeps putting her gloved hands on the ice? I had to step back and say to myself, Izzie needs to figure this out and learn on her own. She learned to stand up on her own without me. She didn’t get frostbite. She didn’t get a concussion. No one said anything about her purple lips or that her legs happen to go in directions that they shouldn’t due to her hypotonia. Instead, they smiled and said to me “Looks like you have a skater on your hands.” Chris and I made the decision a while ago to allow Izzie to be just like other kids. This doesn’t mean we don’t worry, it just means that sometimes, she doesn’t wear a helmet when she gets on her tricycle.

At the preschool, we have to let them know because it is part of her medical plan. They have learned to go with the flow and not stress when she comes in a little purple in the morning. They have learned that she warms up and is fine in a half hour. They also know that when she lies down, that is her way of taking a break and no one makes a big deal about it. I am so grateful for that. I stopped telling other parents what a little miracle she is and what we have been through. I realized one day that I was using Izzie’s medical condition to identify myself. I don’t want to do that.

Izzie has no idea what makes her slower than her sister. She doesn’t care right now. She smiles and laughs while running after her. “Look Mom….I’m RUNNING!” she yells as she chases Addie around the house. I fight the impulse to make her stop and breathe. How is she going to learn how to regulate herself if I am constantly doing it for her? So I stopped doing that. I stopped putting limitations on her. After ice skating, we are going to try swimming lessons in the spring along with soccer. If the soccer coach asks me what is up with her, I will tell him. But I am not going to tell him out my fears of something happening to her. I’m done living that way.

3. Unpopular decision #3: I will no longer be overly cautious (unless the circumstances dictate otherwise) and I will no longer allow CHD to define us as a family.

Having congenital heart disease is only one part of Izzie. Granted it is a big part, but it isn’t the whole part of who she is. I don’t want to be the mom who who allows her fears to make the decisions for her. Being vigilant with her care has paid off but now I feel that it is important to enjoy the life that we have. Her function is great, she has incredible levels of energy and is relatively healthy. Worrying about what can happen down the road will not benefit anyone. Worrying gives an illusion of control. If you worry about something, you can prepare yourself for the scenerio that you think will happen. I have found that life doesn’t work that way at all. I worry about stuff and then other things happen that I was completely unprepared for. All of that worrying kept me from enjoying the moments I was in. I was still caught off guard in spite of my ‘preparation’.

Don’t get me wrong, I enjoy being part of the Heartland. I love to support other families and enjoy doing so. I get so much out of talking with newly diagnosed parents and other moms about our experience. It reminds me of how I share my experience, strength and hope from the podium of Alcoholics Anonymous. But again, being an alcoholic is only part of my identity. It isn’t all of me. Just like being a heart mom is part of me, but not all. Chris isn’t just a heart dad, and my daughters aren’t just siblings. There are so many other things happening in our lives that go beyond the CHD world.

The decisions I have made recently and the direction my life has headed in have changed where I fit in. I no longer fit where I used to. Many of the moms I used to be connected with I no longer feel welcome around. Izzie’s heart defect is no longer enough for me to be connected.  It’s made me think about who I want to be and what kind of mom I want to be to my kids. Posting about the color of Izzie’s lips shouldn’t be a way for me to fit in. My faith, lifestyle and beliefs are what make me Elissa, and I cannot be anything else.











2 thoughts on “Three of the many unpopular decisions I have made recently

  1. Thank you for saying this. This post resonates so deeply with me. Our son with HLHS hasn’t been born yet, but this morning I told my husband, ” I don’t want to lose my identity and become that sad martyr lady whose life revolves around having a sick kid. And I don’t want people to know our son as The Sick Boy. That can’t be good for him.”

    I know the first year will be intense and revolve around his medical care, but I look forward to letting him be a normal little boy as he grows. And to us being a normal family. Is that possible?

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