“We can only be said to be alive in those moments when our hearts are conscious of our treasures.”
― Thornton Wilder
Which means that we have made it one year here in Connecticut. The thick humid air, charming old houses, light summer nights ripe with singing wildlife, it has me feeling unanchored in time. The trauma we went through last year is blinking back at me in blimps and flashes… like post traumatic stress disorder.
We moved. People do. But during this time, our daughter Lydia, always a child who struggled with sensory sensitivity, burst into a new and life altering mania. She hated sounds. Specific sounds, like chewing and swallowing, and sounds of speech, especially S, T, K, P and C.
She hated these sounds, when they were made by me.
This suddenly made every day life a harrowing ordeal filled with angry tantrums and sudden outbursts of rage. I could barely communicate a simple “it’s time for dinner” without her falling to the floor screaming. She flinched, grimaced, covered her ears, kicked her feet, jumped away defensively like she had been burned. She would stomp around loudly and hum, crash things together, sing obnoxiously loud, anything to drown out my sounds.
Desperate, we turned to the internet for help, and the things we read about Misophonia devastated me. Completely eviscerated me. The scarcity of good information and the personal accounts were awful. Stories of families that can no longer live together, or live in the same household but in isolation from one another.
“My little girl is ill. Our lives will never be the same” played in my head, a vicious mantra. No one I talked to about what was happening would validate my devastation. In well-meaning ways they suggested it was simply a discipline problem, perfectly normal considering the transitions the move had forced upon my daughter.
That wasn’t it.
Car rides were a nightmare. Meal times were a nightmare.
And bedtime made me ache. Even now, the sight of her summer pj’s has me reliving some of those nights with painful sharpness.
Just a few weeks into our move, I went in to get the girls to sleep for the night. I decided to just breeze through it, act nonchalant…not expect a battle. Be positive. I took some cleansing breaths, trying to wash away the day’s earlier traumas.
I entered with a smile…and the moment I said “hop into bed and I will read you a story” Lydia screamed and cowered on the bed, kicking her feet angrily in my direction.
Palpable disgust radiated from her expression.
When I turned wordlessly to walk away, not knowing how to bear it, she crawled to the end of the bed and hung on my waist, sobbing. She begged me to stay, and I could feel how rejected she felt as thickly as her disgust, two emotions that I simply did not have the tools to carry together. I smoothed her hair and wiped the tears off my face with my sleeve.
I tucked Carly in first, she complied despite the fear I saw in her blue eyes. I did not dare whisper, so I signed “I love you” and touched my lips with my fingertips, and then hers. I tucked Lydia in next, and repeated the sign language.
This silent communication was not a comfort to me but a physical act that seemed to be shredding our futures together.
I turned away and she grabbed my hand. She whispered “Im so sorry mommy.” She tugged me closer. I climbed into bed with her, pulling her against me, I held her tightly, buried my face in her freshly washed hair, and wept silently until she slept.
Today, my girls are in Vermont with my in-laws once again. They are enjoying all the brilliant fun of summer at Grandmama and Grandpapa’s house…the pool, learning flips on the trampoline (gasp) and eating icecream at the fair.
And I am here, with Rick in Connecticut, swimming in memories.
But, with the PTSD flashbacks comes gratitude, washing over me in great waves.
1. By the time we settled into our new home in Connecticut, my inability to communicate with Lydia had reached a crisis stage. Rick and I would pour over internet information at night, searching for a tiny glimmer of hope. We found a post on a message board. A woman and her son, in Australia, claiming they had found success with a very specific type of neurofeedback therapy. She cautioned that it must be this specific form of biofeedback, as she had tried many others that had failed to work. One positive story, one mother who had not been forced to live in silence or away from her child.
2. We had just moved to a small town, in a small state. What are the odds we would be able to locate a therapist that performed this type of specific neurofeedback for our child? I was skeptical. And we found Inner Act, run by Rae Tattenbaum, a woman who specialized in this neurofeedback. Her office is less than two miles from our home.
3. For the first 5 months, I brought Lydia three times a week. The minute we opened her office door and Rae would inquire about our day, I would crack open, and weep. Every time. But it started working. I was able to kiss Lydia goodnight. Ask her about homework. Take her to buy soccer cleats. Eat (sometimes) together. We pared it down to twice a week, and eventually, once a week. Rae saved us.
4. Lydia has not had regular therapy from Rae since early June. When summer came, our schedule went. We’ve been traveling, visiting family, going to summer camps and beaches. I had hoped the progress we had made was permanent.
It was not.
Lydia is now showing signs of sensitivity towards her sister, Carly as well. We have not eaten a meal as a family, in the same room, for well over a month.
But I know there is hope. To get her back to a place where we can manage. We can be a family. I will not lose my daughter. We will find a way to maintain our bond. There is hope.
5. A few days ago I found out that the young neighbor who used to babysit for us in Colorado has been diagnosed with misophonia. I called her mom…
Oh, the cathartic nature of a talk with someone who truly understands. I can not express my gratitude to Lori enough. She also shared with us that she has found a new therapy… hearing aids that help decrease the sound sensitivity. Her daughter has found immense relief. I can’t wait for tomorrow, to seek them out.
And then maybe, I can have dinner with my baby.