First Year

Can it have been a year, 12 whole months since we met? It's odd to think of that day. In the morning I didn't even know her yet, but by that evening I knew I had met our whole family's soul mate. I think of that day and I grow pensive. I think of all the things leading to her birth, the chaos of that experience, and the utter peace that came with her diagnosis. It makes no sense on paper, but there you have it, she is exactly who we were waiting for those nine months.

I should have known what would happen this last year. The whole time I was in the hospital I cried for all the wrong reasons. First for fear of her heart, then because I couldn't hold her, then because I couldn't nurse her and last because they took her away to the children's hospital. I acted against my nature from day one. I didn't care about that extra chromosome as long as she was healthy. I rested, I took my medicine, I stayed away from researching obsessively and I trusted her doctors. I cared nothing for the superficial inconveniences or the baby we didn't get.

A year later I hardly recognize myself. I assess all of her shortcomings for the sole purpose of making a To Do list and to communicate to the specialists. I am not worried she is not progressing the way I would have expected. I can be honest about her development and I do not grieve that she is not someone else. And I'm more honest than ever.

I look at myself and I no longer bury my shortcomings. I lay them bare and make plans to be better. When I fail it is only temporary because, though I've made little progress, I know I must keep at it the way she must keep at it. She and I are the same.

It is hard to watch her struggle. It is hard to force her to repeat the same things everyday, to label every thing we see or touch or smell. On the outline of my consciousness I am tempted to be frustrated and feel sad. But we chase those thoughts away with our songs and our snuggles. Who cares if she is slower than I wish? She hugs me and reaches for me and smiles. That's all I need. That face helps me focus on the reason we work so hard - love.

It's hard to struggle to be better. It's hard to practice patience and to treat each child as an individual every single day. It's hard to get exercise and to do house work and fit it all in. I fail every single day. I am tempted to feel sorry for myself and feel like a failure. (We bought this house 4 months ago and nothing is "done" yet!) I chase those thoughts away with my list of what matters. God, Scott, our kids, our family, our friends, our community... the list can get quite long. Suddenly I am focused again on love.

I didn't want her to become the sun to our universe. I didn't want to make her our family mascot. Each of her siblings matters as much as she does, each is special and key to our family. How is Mariana key to our family? Mariana asks us all to be our best all the time, to forgive our shortcomings every day and wake up ready to start again each morning. Mariana has done more in one year than most do in a lifetime. This child does not crawl, but has moved the rock hardness of our hearts.

Happy birthday Ms. Mae-Bee. Thank you for the best year of our lives.