Before We Knew

Facebook has this lovely feature. Almost every day, my feed includes a post only for my eyes, should I choose to keep it that way. The post is a memory- from the year prior, or in some cases, many years ago. I've been on Facebook since about the time Caroline was born, so many of the memories are like a walk back in parenting time.

When I see these posts pop up in my feed, my first reaction is shock over how young Andy and I look. But mostly what I notice is the pride in our expressions and how, especially when the girls were babies and toddlers, they way you can actually sense us wearing our hearts on our sleeves for these children. I share many of the photos with my friends because, the brag-a-mama in me thinks that many of them are just to darn cute not to share. There are a few that I keep to myself as a secret memory just for me (and Andy as he is tagged in most and he shares that they pop up on his page, too).

When I see these posts pop up in my feed, I examine them closely. If I'm using my phone, I scroll my fingers outward, to get a closer view of the image. I bring the phone closer to my face and stare at my children's baby faces and baby bodies. I revel in their plump and supple legs and arms, the rolls popping out of their diapers. I re-remember their big doe eyes, their long locks of hair, and the way that their bellies popped out in their swimsuits. I relish the expressions in their eternally captured first moments- taking baths, eating solid foods, sitting tripod, taking first steps, going to pancake breakfasts, riding merry-go-rounds, opening presents, hunting for Easter eggs, and listening to board book stories.

I relish their expressions, the experience of experiencing something for the first time, an experience which is often filled with joy and excitement. I also relish our expressions, if we are captured in the moment. For we, too, are experiencing something for the first time, and experiencing something through your child is often filled with joy and excitement.

When I see the posts pop up in my feed, I also think something else. When I see Caroline's precious chubby cheeks, glistening blond hair, sparkling almond-shaped eyes, and I see the look of love and contentment on our faces as we look at her, I think, wow, that was before we knew.

Before we knew. We've known about Caroline's disability for about six years now- almost half of her life. Since that time, I have learned all that I can about her disability. I have ignored stares in grocery stores and parking lots during tantrums. I have learned how to parent in a way I was never parented. I have been her advocate and her champion. I wear my kid-with-special-needs mom button loudly and proudly. I have endured testing review meetings and IEP meetings. I have "gone through the front door" for services. I have found a community to support her and to support us. I have organized many giant binders of paperwork and documentation. I have accepted that Caro is Caro and this is who she is going to be for the rest of her life and I am going to be the mom she needs for the rest of my life.

The mom she needs me to be, not the mom I wanted to be.

When I look at my Facebook memories before we knew, I see the mom I wanted to be not the mom I am now. When Caroline was a baby, there were no obvious signs of her disability and, as she aged, we didn't have the experience, or enough awareness, to understand that her challenges were due to her neurodifference. When I look back at my Facebook memories, I think about my hopes and dreams for us as a mother-daughter team. I think about what I wanted her to do and be, and I think about how I was going to feel as I watched her do and be. I think about how proud I was to be a mom and how much joy and purpose she brought to my life.

Then I think about how those hopes and dreams have changed so much in six years. I think about what her do and be is, and will be, as a non-neurotypical kid and how our relationship as a mother-daughter team is nothing like what I'd originally imagined. I think about being pregnant and what I thought being a parent was all about. I think about how I knew nothing about being a parent, or sacrifice, or true love.

Sometimes, I go to a really dark place. I think about what I might have done if I'd known, before she was born, that she had a disability, and how, not knowing the severity of her disability, I may have chosen not to move forward with my pregnancy. I think of this and I feel that sad that makes my chests tighten and I can't breathe and I am angry at myself and so, so scared that I cry and I thank god for before we knew.

When I see my Facebook memories, I think about how proud I am to be her mom and how deep and complex my joy and purpose is because she is in my life. While I wish that life wasn't going to be harder for her because of her disability, I would not change being her mom for anything. And I am thankful for before we knew, because ignorance is bliss, but I am more thankful for after we knew because knowledge is, well, it is its own form of bliss, too.