Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
Last week, my friend Ellen Seidman wrote a blog post called “The Grief That Won’t Let Go.” Ellen was one of the very first moms I connected with online who also had a child with special needs. Her words got me through our very early days — days that were filled with anxiety and a fear of the unknown.
We’ve since found our footing as a family. We’ve learned the importance of celebrating Syona’s individual milestones — ones that aren’t noted in any of the popular baby books. We’ve learned that it’s OK to live in a world where we aren’t sure what her abilities will look like in the future. We’ve learned that her favourite colour is blue and she is much more likely to eat her meal if she’s sharing a plate with one of us.
In her post, Ellen talks about her struggle with grief — despite the fact that when she looks at her son she only sees the amazing kid he is, not a tragedy. Every once in a while something happens in our family life that pulls me back to that exact same place Ellen refers to. And while it almost always happens during a big occasion (like Syona’s birthday, a holiday or after a really tough doctor’s appointment), it can also strike in the smallest way.
Last week, I started the search for yet another cup to try and get Syona off the bottle. She uses a litterless juicebox cup for water and the awesome Lollacup for thicker liquids, like smoothies and milkshakes. But somehow we haven’t been able to teach her to use a cup to drink her milk. She has some challenges with her mouth and lip closure, which means that there are a lot of spills when she drinks. Since she’s so small, we also have to make sure that her intake stays the same so she continues to gain weight at an acceptable rate. But my search for a cup wasn’t really made difficult because of any of those technical reasons — it was hard because I have a huge cardboard box filled with cups, utensils, plates and bowls that just don’t work for Syona. This cardboard box — a stupid, simple cardboard box — represents everything Syona can’t use. We’ve tried almost every brand of every type of product that is on the market. We just haven’t been able to make it work. This box, to me, represents failure.
Like Ellen, I struggle, because when I look at my girl, I don’t see failure. I see strength, I see a champion, I see someone who sits there and tries to blow a bubble for 20 minutes “by herself” even though she can’t yet round her lips enough to blow one out of the bubble wand. I see a spirit that has taught me what it means to be strong, to persevere and to appreciate all the ups and downs of parenting.
I know that you may read this and think “Anchel, it’s just a cup. Who cares?” The truth is that I’ve thought the same thing myself. But I think we all have our own version of a cardboard box filled with cups that may remind us about things that are especially hard or difficult to think about at times.
I’m starting to learn how to be more comfortable living in a place where all of my feelings don’t line up all the time, and this situation is the perfect example. So, while I stare at our sweet girl who brings more pride, love and joy to my heart than I ever imagined possible, I know that it’s OK to look at the cardboard box sometimes and feel sad before I pack it away in the basement.
What’s your version of the cardboard box of cups? How do you resolve some of these challenging feelings?