Today, I’m doing a guest blog for Mothering Rare and her “Confessions of a Special Needs Mama” series. Mothering alongside any sort of medical journey is a bittersweet mixture of deep loss and deep joy, and you absolutely cannot have one without the other — the loss makes the joy bigger, and the joy makes the loss deeper. And Jesus fills in the holes left in the in-between.

Confession: I am always bracing for the next emergency.

Sunley looks blue. I wonder if she’s grown more collaterals. Is that even a bad thing? The doctors said they could cauterize those off…but what if she needs them, and the doctors get rid of them, and then she never has the saturations she needs and it puts more pressure on her liver, and she ends up needing a transplant, and we have to move to Houston all over again?

Sunley is taking a really long nap. I wonder if she’s started her decline. And she’s been really snuggly this week so I wonder if that’s just her personality or if she’s getting tired and I’m missing her desats. Should I check her sats more often?

Sunley has a fever. Maybe I should sleep in here tonight and monitor her saturations, just in case. What if I put her to bed without monitoring her, and something happens? I would never forgive myself.

It won’t hurt as badly if I’m expecting it. If I plan for the worst, then I can just be pleasantly surprised when it doesn’t happen. If I get my hopes up, then I’ll just eventually become a disappointed fool.

Welcome to the “less fun portion” of my heart mom brain.

I know everyone’s medical journeys are different, and our family’s mostly invisible disease certainly keeps us on our toes. I feel like I need to clarify, I am not sad or scared all the time. Actually, I’m not sad or scared very often at all. Our life is really happy, just like anyone, and has moments of joy and also moments of pain…just like anyone. But there’s an asterisk that follows us around — rarely making itself fully known — but always there, ready to burst forth at any given opportunity.

I live in a constant state of what I call “go mode.” I am never unaware of how much medication or oxygen Sunley has available at home, and I keep a list taped to my pantry door for an overnight hospital bag. I don’t mention anything when I see Sunley turn blue or show some kind of symptom, because I don’t want her siblings and friends to always be so aware of it. But I see it. I see it every time. It’s still just as painful as the first time I saw her struggle to breathe, but the pain doesn’t hold as much control over me as it once did.

I will never “accept” her illness, just like I won’t accept the brokenness of this whole world. We are not made to feel comfortable here, and I certainly don’t. Put it this way: I’ll get over her diagnosis when she is cured. In the meantime, I can’t help but feel like I need to brace myself for impact, should things not go well with Sunley’s heart. I don’t live in a constant state of fear because I don’t really have room for fear. But, I do avoid “counting on” things that a mother typically wouldn’t think twice about. I can’t really list those things out, because there are some things that heart moms can’t say out loud.

I know that a bad outcome with Sunley won’t hurt any less, regardless of whether or not I brace myself for it. I just don’t want to feel surprised if she ends up needing a transplant, or if her Fontan still doesn’t give her 90s saturations, or if she ends up getting COVID, or the flu, or a bad cold. I know hurt is hurt, and I know I can’t control Sunley’s outcomes, but I also think that I’ll stay in go mode just in case.

If you are curious, you can read about Sunley’s full diagnosis here.

If you’d like to start at the beginning, start here.