I have loved writing this blog over the last eight years. It's been therapeutic in many ways. It has also connected me with others, either to just to give them a good laugh or maybe because I have written something they've gone through, too. Or, perhaps, it just given someone insight into my life. I've loved sharing my life through this medium, however, there is a part of my life I have previously chosen not to share- until now. Last fall, I wrote an essay in response to the question, what was your eureka moment. I decided I wasn't ready to share the essay on my blog, until this week. I wasn't sure if it was my story to tell yet I have chosen to share for two reasons- Caroline and Charlotte.
Caroline has struggled with anxiety this spring and has had a lot of questions. Charlotte, my very vocal extrovert, is always there to illuminate. This week, in the car on the way to preschool, Char was listening to iTunes and she chose the song Secrets by Mary Lambert. If you've not heard it, you should. Charlotte stopped singing, and said to me, "We should play this song for Sissie." I, thinking a million things in my head and only half paying attention to the world around me, asked why. She replied, "Because Sissie shouldn't care what her secrets are. She should be be proud of who she is."
In the middle of a hectic morning, with too much on my mind, she stopped me in my tracks and I started crying because I realized Mary Lambert's song is our anthem. This post that I share with you here, this is our story and I'm proud to share it with you.
I fell in love with Caroline when I was 12 weeks pregnant. I told my husband, Andy, one night during dinner, “I love this baby more than I love you.”
My pregnancy and delivery of Caroline was perfectly normal. So I found myself saying years later, over and over again, to nurses and specialists. Our early days with our daughter felt typical. She slept and ate well. She giggled and played patty cake. She rolled over and sat up, just like clockwork. Sure, it took her a little longer to walk but it only meant our excitement about it built. I’ll never forget the wintry night when she let go of my husband’s hand and toddled to me. So thrilled over the milestone, we called and emailed all of our friends and family (this was before Facebook hit the post college set) and considered sending a note to the local newspaper. We were tired, and overwhelmed, caring for Caroline, but only in the ways that make parenthood a rite of passage.
I first felt a sense of doubt around the time Caroline’s sister was born. Caroline was 3 1/2, starting to talk and her Marilyn Monroe-esque, breathy voice seemed to catch everyone’s attention, as did her out-of-control temper tantrums. Like many children her age, Caroline quickly transformed from smiling to enraged. However, unlike her peers, her tantrums lasted several hours, included vomiting and hitting, and sent her into a trance-like state. When in the middle of a tantrum, my little girl seemed to hide inside of herself, far away from me. Nothing I said or did could bring her back out, and when her tantrums would finally end, she acted defeated. She had no recollection of having the tantrum or the ability to articulate why she’d been angry in the first place.
My eldest’s behavior was icing on the cake during a long summer of maternity leave. I’d heard that children can regress when a sibling is born, so I assumed this was happening when Caroline would tantrum, be unable to dress herself, pee in her bed at night, use baby talk, and display generally argumentative demeanor. Over the next year and a half, Caroline’s behavior worsened and I mentally took note of the differences between her and her peers. She didn’t like to color, or draw, or play with toys. It seemed all she wanted to do was watch TV. She could sit for hours, staring at the TV, and if we turned the TV off, she’d stare at the wall. While I had a bad feeling in my gut, I kept it buried there. Andy and I were treading water, trying to survive while raising two girls, working, and paying the bills. No one at her daycare ever expressed any concern that Caroline was having difficulty and they were the experts on child development. Why should we worry?
When I finally did mention my concerns to close family or friends, they brushed me off, telling me that I shouldn’t compare my child to any other. “She will develop at her own pace!” “Don’t force her too much!” You’re overreacting!” I felt guilty for wanting to push Caroline, for wanting her to be more like other kids, for wanting her to be more like me or the best version of what I wanted to be. Why wasn’t she interested in playing with dolls? Why didn’t she want to color and draw? And honestly, why couldn’t she be more compliant?
Those around me reminded me of the terrible assumption that poor behavior is a direct reflection on parents. It seemed that no one noticed Caroline’s inability to play or lack of interest in other kids, but they sure did notice how much she yelled to communicate, stomped her feet, and tantrummed over anything. Her outbursts were so frequent that I would regularly sweat buckets and hold back tears, juggling the baby and carting Caroline, football-style away from whatever public event we were attempting to participate in.
I learned to adapt to survive. Over and over again, we would go to fundraisers, the park, the beach, birthday parties, and family functions, and my first course of action was to find our escape route so that our inevitable dash to avoid humiliation could be as quick and painless as possible.
I hit rock bottom the summer of my maternity leave when I traveled to see my parents for a week, with the kids, and without Andy. My mom and aunt were preparing dinner. It was way past our regular dinnertime. We were not in our home. This was not our routine. The baby started to cry and Caroline started to scream and stomp her feet. One of my family members watched me attempt to soothe the baby and placate Caroline. As I held back tears and tried to hold my head high, he said to me, “You’re kids are very cute but they are the most poorly behaved children I have ever seen.” This moment was a low I’d never experienced before. I felt completely alone and out of control. I was afraid, questioning my parenting abilities, and my sanity.
As a mother does, I bucked up and carried on. I read every parenting book and dragged the family to a social worker who told us that Caroline’s bad behavior could be remedied if I spoke with more authority, like my husband, and used words like “please” and “thank you” less.
Without a concrete solution, we hoped that Caroline would change once she entered Kindergarten. We were fortunate that fall to meet several amazing educators who partnered with us in trying to put the pieces of the puzzle together. For once, we weren’t the only ones who could see that Caroline was different. The question was “why?”
Over the next two years we were introduced to a team of educators all working to understand and support Caroline. They encouraged us to seek advice from medical experts which led to many road trips to specialists and to us answering the same questions. We’d arrive hopeful, and often, leave very tired, disappointed and frustrated. We were putting Caroline into challenging situations, testing her limits, and our own. There seemed to be too many puzzle pieces missing to understand the full picture of her struggles. Andy and I still prayed that maybe she’d outgrow all of this.
When I would confide in friends and family, some would listen and others would hint that Andy and I were perfect examples of our generation’s worried helicopter parents. There’s nothing a little tough love can’t solve, right? Yet, each time, I wanted to give up and admit my failure as a parent, fate would place me in a conversation with an ally. In hushed tones, and sometimes through no words, just understanding, all I needed were a few people to cheer me on, “You can do this. Keep going. You are being the best mom you can be because you won’t stop until you can help your daughter.”
Two summers after rock bottom, I got a phone call while I was driving the girls to the local pool. I recognized the number. My heart pounded in my throat. I pulled over and answered. It was the genetic counselor. We’d spent the spring months driving to geneticist and neuropsychologist appointments. Caroline had endured hours of more tests. I was prepared for no answers. I was numb.
What the counselor said to me changed my life forever. “Melissa. We have the results of the genetic test. Caroline is missing part of a chromosome. She has a developmental disability. This just happened. There’s nothing you or your husband could have done differently. You have a beautiful daughter and you are going to get lots of support for her.”
My Eureka moment started that day and has happened each day since. I am enlightened. I am no longer numb. I am informed and empowered. Finding an answer (a genetic deletion and Autism Spectrum Disorder) allowed me to stop feeling guilty about my parenting and helped me be an even better parent. Caroline also makes me a kinder, more understanding, more resilient person. Through this whole process, I never stopped loving Caroline any more than I did when she was in utero, but I did stop loving myself. That day, on the side of the road, I cried and I told myself to let go of my own anger and to find love and inspiration in the challenges that life gives us. I no longer wish for Caroline to be the perfect daughter and instead I find joy in who she really is and what she has, and will, accomplish in her own way and on her own terms.
Finding out why there were pieces missing in my daughter’s puzzle opened my eyes and my heart. She has taught me that acceptance of our children is the deepest love of all.