11/10/2014 10:34 am ET Updated Jan 10, 2015

In Five Days

Suzie Skougard

Everyone keeps asking me how I'm holding up and telling me to "hang in there." I brush it off with an, "oh, we're doing fine. We're okay," but I feel like I've been stabbed in the gut. I'm not sleeping. I'm living in constant fear and it's unbearable. I'm a wreck, and I don't think I'm really fooling anyone.

I gave birth to the most beautiful child I could ever have imagined. I love her eyes. I love her button nose. I love her little lips, her barely-there fuzzball head of hair. I love the way she coos, and the way she smiles a goofy, mouth-wide open grin. In five days, I will be handing her over to a team of pediatric surgeons. They will cut open her chest and, provided all goes well, they will repair her heart. In five days, I will face the hardest day I have ever had to face as a mother. I will face the hardest day I have ever had to face in general. It's there, just looming.

During the consultation, they told me that they had to inform me of the 1/100 chance that she could pass during surgery. If she didn't have the open heart surgery, her odds of survival are zero. It's a no brainer that we'd opt for the surgery. This is a life-saving surgery. The numbers still scare me. Statistically speaking, by my age group, there was only a 1/1,700 chance that she'd have Down syndrome, but she ended up being born with it. She also has Sandifer syndrome. That's only in 1% of cases of GERD. The numbers don't provide comfort at all. What if we're that random outlier again? The odds are even higher now. What if something goes wrong? How could I continue being strong for my other children?

And then I try not to focus in on that. I want so badly to be positive. I try to just think about how healthy and strong she'll be when it's successful. I try to picture it in my head-- but because I have no idea what to expect, I don't see it. And that in itself scares me. Why is it easier for me to see the dark? So I spend most of the time just not thinking at all. Mindless TV, mindless chores -- staying numb. Until I hold her. Until I feel her little heart beating through her chest, and I feel her breaths and I listen to her sleep sighs and -- oh God, I'm not strong enough.

I was warned that it was hard being a special needs parent and when I thought about all of the extra appointments, the therapies, the medicines-- I thought, yeah, I could see that being difficult, but I got this. No, I don't feel like I have this anymore. It is hard. It's a different kind of hard. It's well worth it, but it's an emotional, gut-wrenching hard to watch your kid hurt. To trust surgeons that are little more than complete strangers with your child's life, begging, please take care of my daughter. Please see her through this.

She is my heart. I want the chance to see her grow up. I want all of the moments to be proud of her. I want to watch her learn, grow, play with her siblings. I want a million more smiles and a million more laughs. Please.