Before I was a Mom, I once spent a fabulous vacation with Martha Stewart. An entire week cooking, crafting and fussing around my new house, just me & Martha. I followed bookmarked pages from Martha ‘s magazine and splurged on Martha's new appetizer cookbook. It was a DIY week of domestic goodness culminating with a baby shower I would host for a dear friend.On the day of the shower, I filled pitchers with Martha's sparkling spritzer punch and spent the afternoon stuffing tiny green grapes with herb seasoned goat cheese. My husband, who offered to clean up the demolished kitchen, was hovering nearby anxiously checking his watch. My memory of what happened next is fuzzy, but looking back we both agree that I was running late, too anxious and approaching " it's-gotta-be-perfect-like-Martha" freak-out full hysteria. I was projecting my panic when he took the patio hose he was using to fill the mop bucket and aimed it right at me. I ended up very wet and kinda pissed, but my mood was much more manageable.
After my daughter Zoe was diagnosed, I would find myself in the middle of the night at my bookcase searching for the right book. I had filled more than two shelves, overflowing with books about understanding the special needs child. Books about epilepsy, sensory disorders, inclusive education, cognitive issues, and in a way.. all of these books were helpful. Reading all of these books taught me to parent with more confidence. Yet none of these books helped me to feel less afraid, or less lonely, because these books weren’t every day, real stories, about simple moments of parenting a special needs child.
I wanted to feel encouraged and needed to be understood. I was feeling left out in my social circle of typical moms and craving the common bond- of knowing another Mom like me, living a similar life.
Women everywhere have always talked about motherhood and connected with a common bond; in the produce aisle at the grocery store, in the waiting room at the pediatrician’s office, the hair salon, and thanks to blogs and online communities.. on our laptops and Ipads. We are experiencing moments of affirmation, understanding, even comfort if that is what we seek and it’s happening when we share our stories.
I couldn't help but write you this letter, and I hope that's okay. I have so much to thank you for, first for being Zoe's ' buddy" at summer camp.There is more I want to share with you too. My hope is that you will tuck this letter away and read it again at different times in your life.
I hope it will help you make sense of your world, maybe inspire or comfort you when words like these are what your heart needs.
I am so happy to be home with my girls this summer, still working.. still writing, and as always stymied as to how to be more exciting than their Ipads! To keep us busy, and creative- savoring the simple things of summer I am writing about some of our fun times, weekly at this gorgeous, cool website Moonfrye.com.
I am happy to be there, having some fun! You can find me here. Hope you have a chance to drop by.
Acceptance, Open your eyes. I want others to accept my child for who she is, to look close and see her goodness. At first glance you might miss her amazing sense of humor, the way she can make you laugh or the positive light she radiates, and really.. that is your loss. My child greets everyone she sees with “Hello” , and tells each person she meets, store clerks included, goodbye.She has taught me how meaningful this simple gesture is-because what she is really saying is.. “ I see you. “ Zoe knows that when people look at her, they first often see her “ equipment”. She has accepted that kids stare (a lot) - but seeing the person behind the wheelchair is important. Acceptance starts with a simple and meaningful “ hello”.
It's Summer, and I am thankful to be slowing down a bit, yet still trying to accomplish more. My husband and I have always been big fans of fresh herbs for flavor and healthy eating, years ago after Zoe was diagnosed with a significant vision problem I started researching sensory gardens. Ever since, I have nurtured a couple herb gardens at home. It is easy and a great sensory experience for the whole family. Savor the simple things this summer ! You can read more about it here.
“ I like helping you..” My daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on.. “ I need to learn this stuff, how to be a Mom for when I grow up. I have been thinking about this....” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “ Is it hard to be a Mom?” She is smiling, happy to imagine her future- self this way.
I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.