My Dearest Nicholas, You made me a mother six years ago. My first Mother’s Day was spent in the NICU. You came into this world with a number of challenges. Swallowing issues, developmental delay, sensory difficulties, non-verbal Autism, a rare genetic mutation, the list goes on. Despite not being able to talk, as your mother, I still know exactly what you want. I know when you point toward the kitchen counter, you need a tissue from the Kleenex box. I know when you bring me your tablet, you want to…
I’ve thought and thought on this subject. I’ve taken every inflection and word to heart. And, I simply don’t agree. I’ve been told on more than one occasion, “Why don’t you put down your phone and bleeping take care of your kids?!?” First of all, I am not anything like you! I do not have the luxury of going to get my nails done, or a facial every other week. I don’t get to go on weekend mini girls trips every once in a while for self care. I…
I spent the first four years of my son’s life in a frantic state of hope. A hope that he would be “healed” like so many of the stories I had been incessantly devouring. Such as the story of the boy who spent his early childhood spinning disks on the floor–unable to connect with his mother sitting directly across from him–who later went on to be a successful CEO. Like the girl, full of quirks and disconnect, who went on to be the cheerleading captain of her high school. And…
So today, we did something really brave. Something that’s been on our goal list for years. We took our son Cooper to a restaurant. Now I know to most folks that’s not a big, huge deal. But to us, it is. Cooper went to his last restaurant at 18 months old. We were basically kicked out. It was humiliating. We tried one other time years later but had to leave mid meal. So it’s been 8 long years. And been a goal for the last few. Sitting. Waiting. Eating. Noise.…
Yesterday I visited my dad in a nursing home. It’s funny how our mind and our heart can play tricks on us. Meaning, I understood he was in there, but I couldn’t really believe it. Even as I type the words ‘nursing home’ I have the urge to erase them. It was also his birthday. 79 years young I told him. As I drove the nearly three-hour drive alone to visit him, I tried to prepare myself for what I was going to see and feel. Would he be the…
I’m at this point in my life, silly as it may sound, where I try to figure out the lesson when things happen. What did I learn from this? How can I do better next time? Can I help in anyway? And so on. This morning I woke up to an adult woman making fun of my son’s haircut. Which is strange. I mean, she’s an adult. A mother. She can type and speak. My son is ten. The comment didn’t need to be shared. It was not necessary. What…
One of the things I’ve learned as I’ve aged is that there is more than one way to look at something. Most things are complicated. Intricate I guess. They aren’t simple. I’ve even learned that my heart and mind can feel differently too. As if at odds with each other. I just took my oldest and youngest sons to the park. Our park. The one place where we can move comfortably without fear of judgement of the boy who moves and communicates and thinks differently. It’s our favorite place. On…
I am thinking about you today. I want you to know that everything you do matters. When you crawl into bed at night, aching from your temples to your toes, know that you have done enough. There may have been no progress made with toileting, feeding therapy or communication today and that is okay. Your child is safe and so loved. The weight of hectic schedules, parent trainings, OT, PT and visits with every other MD in-between can feel suffocating. The research, the meltdowns, the battles over chicken nugget brands…
Did you ever wonder how mothers of disabled children were chosen? Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. “This one gets a daughter. The Patron saint will be Cecelia” “This one gets twins. The Patron saint will be Matthew” “This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity” Finally He passes a name to an angel and smiles. “Give her…
See that man on the left there? He stopped by our home today to do business with Cooper’s dad. When he walked in…Cooper gasped. And pointed. And waved. Now knowing my sweet boy, I know that he will continue to wave until said person waves back. Sometimes, people don’t notice him because he is unable to speak. Or they are busy. Or they get uncomfortable by the bigger ten year old boy waving so intently. I’ve seen it all. So, I often gently say…‘this is Cooper and he is autistic.…
