Genevieve Ann. There’s a lot that I can say about her. She’s fierce. She makes me laugh. I know if I call her I’ll feel better. I don’t dare miss a Thursday call from her. It’s been our thing since I was little. There was that one time in college where she called me 3x’s upset that I didn’t call her because it’s Thursday. Then she realized it was Wednesday. She and my Papa made quite a team. I remember I wanted my marriage with whoever I married to be…
To my Johnny, I can see it now; The chaos, the fear, the love, the moment you entered the world. It was 10:31pm and the room was full. Nurses and staff running about, Gad, Grammy and your Aunt cheering with joy, machines beeping and a baby crying. In a strangely unceremonious way you were laid down on my chest facing away from me, curled up in the only position you had ever known. I remember trying to ask if I could see your face and it going unheard. I felt…
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…
