I see you staring, passing judgment, calling my 3 year old a brat in your head, wondering why her parents don’t discipline her. Rolling your eyes as she screams, the shock and horror as she tells me she hates me. Admittedly, before facing this problem in my own home, I would have done the same thing. I’m now ashamed of that……it makes my face burn in embarrassment. To think I would have heaped mounds of judgment on the head of some frazzled mom who is already facing such a tear filled challenge makes me want to hide in a corner and weep.
I have a new empathy for parents who go to head to head with the medical community. Who fight and advocate for their children. Who refuse to take a static answer because, frankly, the doctors have no idea what is wrong with their kid. I have compassion for moms and dads who endure the scorn of family and friends who think they are over-reacting. Those parents who sit in the waiting room at a hospital – waiting to see what answers a ridiculously expensive medical test will give them. As they sit waiting they feel guilt for worrying about the medical bills that they know will be rolling in…..guilt for potentially financing the future of their other children to “cure” this one. Wringing their hands in worry, tears forming in the corners of their eyes, pretending to be strong, knowing that no one understands their fear and frustration.
I’m the mom who tiptoes around her once cheery child. A little girl born with red curls and dimples….ivory skin and a rosebud mouth. The little girl who has and still does make my heart overflow with joy. Her daddy’s princess, her Nana’s rotten, her mommy’s sweetpea……she is fierce and strong willed and stubborn but what some people don’t realize is that she is also compassionate and timid and gentle. People don’t see those things in her as much anymore because those qualities are crowded out by fits of rage, sleepless nights and hurt filled words. Most days I see my sweet ballerina girl….bubbly, beautiful, happy but there is always something brewing right beneath the surface. We tiptoe around, praying that we make it through the evening and the night without a “fit”. I watch the pain in her daddy’s eyes as she refuses to let him hold her or interact with her. I know the pain in my own heart as I watch her stare off in to space……almost like she is absent from this beautiful life that we all share together. Our family feels splintered…..with jagged edges threatening to slice us in two at every turn. We spend more and more time trying to avoid a meltdown and less and less time enjoying each other. Exhaustion has set in…..the fear of taking her too many places makes us feel like prisoners at times…..the fear that comes when we think about the rest of our lives being this way is overwhelming to say the least.
What is a “fit”, you ask. It is an hour of screaming, irrational ranting, throwing things, hitting, hurtful words, fear in my daughter’s eyes but refusing to let me touch her or comfort her. Last night she woke up screaming “santa”…..I didn’t get to her fast enough. I was tired and had taken medicine for a headache…..I was too asleep to hear her first whimpers and by the time I got to her it was too late. She was raging…..angry…..scared. She told me she hated me over and over again……..spewing hurtful words at me like lava from an erupting volcano. She demanded that I leave her room but as I turned to go she pleaded with me to stay. I walked back in the room and she cowered in the corner like a scared puppy. She barricaded us in her room……it was complete darkness……she screamed “I’m so tired” over and over again yet still would not let me touch her. Again she screamed for the TV on and at the same time ordered me out of her room……I turned the TV on and headed for the door. She begged me to stay and turn the TV off. We played out this scenario over and over until I had to walk out. I was so tired and frustrated and scared………I had the exact same emotions that my screaming daughter did. I listened to her cries, begging me to come back, begging me to hold her, to comfort her, to chase away these proverbial demons………..I walked back in the room knowing there was nothing I could do. She wasn’t going to let me help her……..I had to wait until the “fit” had run its course.
When she finally calmed down and I was able to lay down with her, I covered her tiny, frail body with my own. Willing her to feel safe and loved. She turned her face towards me, tears streaming down her cheeks and said “I’m sorry I’m so mean to you…..I don’t really hate you”. We both laid there in the dark on her purple polka dot sheets and we cried. I cried for my tiny ballerina dancer who for whatever reason is so tormented……I cried because I feel like I’m failing her……I cried because I know that this isn’t just her being 3…..I cried because no one understands the depth of despair that this kind of thing can push you to…..I cried because I want to rewind to December when she was okay and we weren’t searching for answers…….I cried because there doesn’t seem to be an answer and I cried because I know that so many people have labeled my sweet, beautiful, compassionate girl as a spoiled, defiant brat who just needs a good hard spanking.
I hate the judgmental stares of other parents but more than that, I hate that I can’t fix whatever is broken in my little girl. I hate that I’m not sure if I can survive another 6 months like this. I hate that I’m afraid she may never be “normal” again. So many things have changed over the last 6 weeks…..every day is a toss-up as to how it will turn out……every outing brings feelings of anxiety……every stare and well intentioned suggestion brings feelings of failure. I know we will make it…..whatever comes…..whatever this life brings I will never quit advocating for my child. I will never give up the fight…..I will never quit trying to hold her when cries out for me. I pray that I always see my tiny, ballerina girl………that my heart doesn’t become hardened by the hateful words and the sleepless nights. She needs someone to love her unconditionally…….to always see the good in her…….to remember who she really is regardless of how she is behaving.
I’m not writing this asking for pity or suggestions or advice. I’m sending this out into the universe because people don’t get it – they don’t understand – they don’t want to understand what it may be like to live with a child who doesn’t fit into society’s neat little box. Maybe the next time you offer up your opinion you should stop yourself and instead offer a hug or a shoulder to cry on. Instead of advice……..offer a prayer…….a plea before the throne that this child comes through this challenge and that his or her parents have the strength to walk this road. We should always remember that kids don’t come with instruction manuals……parenting is hard work and none of us know what another parent truly goes through in the middle of the night. Your road is not mine and mine is not yours……..I need your love not your judgment……….I need your compassion not your criticism……..I need your prayers not your persecution.