I've been meaning to write about a somewhat sensitive issue for a while. After sharing the Huffington Post blog about what it’s like to parent a child with special needs, a number of friends asked how they could be supportive to us. Some even revealed that they didn't always know what to say to us (which I really appreciated). This week, while offering kind words of support, someone shared that they knew I probably felt bad around their young child. It's a bit depressing to recognize the reality that our situation may be causing people we care about to feel uncomfortable around us..or that they may assume we feel bad about Caroline around other children (we don't).
I think sorrow is nuanced. And although I felt nearly every word Maria Lin wrote in her blog post, I was never sure about her second point: I am Jealous. I've been giving that part a lot of thought, but wasn't comfortable sharing my own experience until now. The truth is that I don’t feel jealousy around typical children. I don’t feel bad that my child has special needs. This may surprise and even upset some, but I never find myself wishing Caroline was a typical child. She is no more or less than anybody else. We hate that she has to struggle so much, but we can't change who she is. In fact, we adore her as she is. I can't imagine comparing Caroline to another child, and feeling that I am missing out. Some may think I'm in denial. I believe I'm just a proud mother.
Did I ever feel sad around typical children? Yes. My heart completely broke when Caroline went through the worst stage of regression about a year ago. Seeing children running, playing with their toys, talking to their parents, or even feeding themselves was beyond painful. Everywhere, I saw reminders of all the things Caroline was quickly losing. But those feelings didn’t stick around for too long. I needed to get over the shock of the initial diagnosis. I needed to figure out how to navigate this new world we were about to enter. Once I got over mourning for the child I thought we had, I began to cherish Caroline for who she really was...is. The odd thing is that I never once felt bad around children I knew...probably because we were surrounded by a great deal of support and love. In fact, being around children I know brings me a great deal of joy. I love watching Caroline's happiness when she's around her friends. And my heart melts with how sweet even the littlest ones treat Caroline. Their interactions are adorable, funny, and touching.
There are certain things that do make me feel bad… even drained sometimes. Our society places a great deal of importance on a very specific set of milestones and accomplishments. An individual’s worth is then based on their ability to achieve these goals within a certain time frame. Some parents can get wrapped up in how their child is measuring up, often resulting in passing remarks tinged with a bit of underlined competitiveness. Children sometimes end up becoming a measure of their parents’ own success. I tend to tune out such conversations. I just can't relate...and don't want to.
I also feel bad when I hear thoughtless comments that draw comparisons to things Caroline is unable to do. "I'm glad the infant phase is over because you get so much more out of them when they're talking and doing their own thing." "I’m so glad I don’t have to feed her anymore so that I can eat too!" "I'm relieved that he can finally entertain himself." Caroline inadvertently becomes a representation of what some judge as undesirable, which really hurts my heart.
I struggle to explain my feelings because there are no clear cut lines. Emotions are definitely heightened. The sweet moments and dark moments are felt more deeply. Although I am positive and happy most of the time, there are times in the year when I experience triggers that bring up feelings of sorrow again. Specifically, I don't look forward to holidays since Caroline's diagnosis. I also don't look forward to her birthdays. These dates remind me of the painful aspects of having a child who can't take part in “traditional” activities on her own. They also remind me that time is passing by and that I have a child who may not live to be 20.
But please don't pity us. We are happy proud parents of a beautiful little girl. Our household is filled with love, laughter, and humor. We strive to live in the present. And the present is beautiful.