September Fridays

About a month after Vivian was born, I was beginning to wrap my mind and my heart around the fact that she would need heart surgery. That her heart was not created healthy enough to sustain her without help. This was heart-wrenching, but I was getting used to the idea. I was thinking I could handle it.

One Friday in September I wrote this.

Within the next week Vince and I noticed that Vivian's irises were different sizes. A visit to the pediatrician landed us a referral to an ophthalmologist. But with that appointment weeks away, I scoured the internet for answers. Eventually I found the answer, and then some.

The following Friday, exactly a week later, I happened upon a wikipedia article that changed everything. Almost a footnote, I read a sentence that said something to the effect of in rare cases, a coloboma can be present with other birth defects, including the heart, hearing...part of a genetic condition called CHARGE.

I clicked the link. And I will never forget that moment. Because everything was suddenly different. I knew. And I didn't want to know. But by then I couldn't unknow.

I started into a not-so-pretty tailspin. 24 hours earlier, I had felt like I was getting a hold on coping. Now, I couldn't cope with anything. Everything was bleak and dark and dreary. Thoughts swirled in my mind: I didn't ask for this. I want her to be normal. Will we have more children? I'll never see Mexico again. I woke up in the mornings unable to breathe, a heavy brick on my chest allowing only shallow breaths. I floated through my days, taken care of by my dad, who fed both Vivian and me, took us for walks, kept us company. The HGTV channel was on constantly - an effort to fill my mind with decorating ideas instead of the ever present worry and anguish. At night, when Vince was home, I cried - on the kitchen floor, in the bathroom, as I fed our little baby.

I honestly never thought I would feel joy again (as I type that, tears sting my eyes, remembering so clearly what that felt like - it felt like a death sentence). I thought So this is what life is going to be like now. I didn't think I'd ever be the Hannah I was before August 9. I mourned that. I wanted to go back and start over. It was a very self-centered time, because I was so wrapped up in how everything would affect me.

I somehow found the grace to ask for and accept help in the midst of all this mess. When Vince suggested I call our midwife for advice, I said yes. I said yes to talking to a psychologist. I said yes to antidepressants for awhile to help get me over the hump. I said yes when my dad offered to come each day and keep us company, caring for Vivian and me while Vince was at work. I said yes to visits from friends. I said yes when my parents told Vince and me to go out for a nice, long dinner while they watched Vivian.

One day Vince had taken Vivian to the backyard to sit under our tree. He called me out to join them. Crying, I sat in the end of summer, start of fall sunshine. Vince looked up at me and said Hannah, I still feel lucky. We're so lucky Vivian's here. She's going to have a good life because she has us. Vince's confidence and assurance that our life could still be beautiful, could still be joyful, started to bring a little light.

It's like the Leonard Cohen lyric: "There is a crack in everything; that's how the light gets in." I had hit rock bottom and I was broken. Full of cracks. But those cracks did, in fact, start letting the light in again. Little by little, brighter and brighter.

One morning in October I woke up and I felt like me again. It was like a happy secret had filled my heart. I suddenly had this very quiet but confident understanding about our life and these unexpected curves. I wish I could better articulate this understanding - but suffice it to say that something shifted in me, and I am so thankful for that. Most of the time these days, my life makes sense to me. I'm still sad sometimes, of course. I'm overwhelmed by Vivian's encompassing diagnosis. But I've decided to enjoy and trust and have faith.

Life with Vivian is amazing. We smile and laugh every day. We surround ourselves with wonderful people. We have a lot of fun. One day we'll sit as a family on a Mexican beach, eating guacamole and watching the waves, mariachi music approaching in the distance. And I'll be so glad for the light that Miss Vivian has brought to our life.

PS I wrote this a couple of months ago. For a while I felt such shame about the things I thought and the way I fell apart when I first found out about CHARGE. I know every mom's experience is different, but I decided I would share a little about my dark days in case someone else might relate. I've read a few personal stories by moms of kids with special needs, and I found such comfort to know I wasn't the only one who had thoughts of wanting to start over or wish it away before eventually finding her own peace and joy on a new path.