Always and in so many silly ways, we love you. Through the remarkably challenging stuff and each heart warming moment, I think of you and I love you. In struggle and in triumph, her dad and I stick to the promises we made with you, six years ago today. When Seeley notices her remarkable hair, she thanks you. When she finds an eyelash and doesn’t want to wish for a pet jellyfish, she sometimes sends you her extra wishes. When she catches a fall on her big biscuits, she screams…
The love language for a special needs parent to feel seen, accepted, and understood is as simple as a head nod, and a “me too” on a zoom call or a quick chat on the phone. Or maybe even in the grocery store where your child is having a hard time. If you’ve ever been that person for another special needs mom, you’ve changed their life, you’ve made them feel seen, and they thank you for it. Thank you for sharing your story of walking through the hard, so that…
For most 18 year olds, leaving home to go to college is a rollercoaster of emotions. This next chapter can bring feelings of excitement at the new freedoms ahead or nervousness to leave parents and the comfort of home. And while I had those typical emotions, I had one feeling that far outweighed all of the others. Guilt. What could an 18-year-old, ready to take on college in the pursuit of her future career, possibly have to feel guilty about? I was leaving my brother behind. My big brother, who…
The special needs “warrior mother” is a well-known figure. She’s the mother that kept pushing, read all the literature, challenged the doctors, demanded services, lobbied congress: in short, she changed the world and then went on Oprah to promote the book. Chances are she’s reading this right now… boy, am I in trouble! Yet how often do we hear of the warrior fathers? Crickets. When I first heard the experts murmur the A word, my defense mechanisms kicked into high gear and I immediately erected a wall of denial around…
Will my daughter ever have a friend? Will other kids see how funny and smart she is even if she never speaks? Will they tease and ignore her? Will they be scared of her? When she gets older, will she join a team or a club? Will she meet a kindred spirit who sees her for all that she is and what she can do, instead of who she isn’t and the things that she can’t? Most parents worry about their kids belonging at some point in their parenting journey,…
My son Daniel has been challenging since the beginning. He is strong-willed with a big personality and has even bigger feelings. He cried all the time as a baby. I attributed his big emotions back then to him being in pain. He had a cast on his leg the first few months of his life due to his club foot. It never occurred to me that something else was going on. I assumed because he talked and walked before his siblings that he was a normal kid. I wanted and…
Nearly every day we get a letter, or an email. Some have good news, some carry rejection. Like a version of the infamous Dr. Seuss poem, the messages and envelopes tell a modern-day story of the places you might go. New York, Pennsylvania, Connecticut, Massachusetts. Some schools are in small towns, other sprawl amongst tall buildings and busy sidewalks. Some have large, rambling campuses with extravagant dining halls. Others boast state-of-the art technology, or winning sports teams. All of them are far from home. He sees the return addresses, when…
People always ask me how much my son Coops understands. I think they ask because he’s nonverbal and often it may appear to the untrained eye that he isn’t paying attention or comprehending. My answer is a lot. He understands so much. He is always listening. And when I don’t know the answer…I presume competence and encourage others around us to do the same. There is one thing though that I know he doesn’t understand. He doesn’t understand that his younger brother is growing up and will soon want his…
Today I witnessed a mother’s hardest day. Her daughter’s funeral. She was 14 years old. She died for no reason. It was one of those things that make no sense and makes you wonder why and how and question everything. She is my cousin. The woman. Her dad and my dad are brothers. I did not know her daughter. I need no condolences. And yet I sobbed through the entire funeral. As a mother to three boys, I felt an ache of the emptiness. And the loss. Hers. I thought…
It takes incredible bravery and courage to go out into the world knowing that you will be misunderstood and unable to communicate. This kid, and so many like him, do it every single day. They get a kiss from their mom, walk to the bus holding dad’s hand, and leave their safe place. Think about that. If something happens to him, if someone hurts him, if someone is mean to him, he can’t tell me. And yet he believes and trusts in the good of the world. Every day I…
