Friday, February 23, 2018


Jacob's class read Wonder in the fall and we were all invited to attend a screening of the movie over Christmas vacation. I haven't read the book but I knew the premise of the movie - a boy who was born with a condition that made him different. I didn't bring Jacob. I was feeling resentment. Sadness. Anger. Jacob knows that he is different. He doesn't want to be. His "condition" goes unnoticed sometimes because while he has a physical disability, he is a handsome boy. His classmates know he is different though because they have observed that he doesn't use his right hand often and he has a paraeducator who travels with him and monitors him on the stairwell and on the playground. He works with a special educator in the classroom and is pulled from the classroom for resource or PT or OT. By all accounts, his classmates are nice to him. Some are even kind to him. But he is invited sparingly to birthday parties and almost never on play dates. One student in particular has known Jacob since preschool and although Jacob has invited him to his birthday parties, this past year was the first that he attended. When the student was celebrating a birthday the following week, he told Jacob that he wasn't able to invite him because his parents had invited a certain number of children and it cost money to have the party. He was fine with that. But when I saw the pictures on Facebook and saw over 30 children had attended, it went right up my ass. I know this is my problem but this is why I didn't want to see Wonder, because Jacob is a wonder and I wait for the day that his classmates recognize this. I rented Wonder on pay-per-view this morning since we're on vacation and Jacob didn't think he'd be able to sit in the theater to watch Black Panther. It's good. Jacob said something though that surprised me. First he didn't believe that there were really children born with facial deformities. He wanted to know who they were, where they were. I told him I didn't know anyone in particular but I hoped that if a boy like Auggie was in his class that he would be nice to him, kind to him. Jacob said he was glad he didn't look like that when he was born with the boo boo in his head. What the fuck. Of all people. Calm down. It is always a balancing act. Protect him, let him go. Make him do therapy, let him be a kid. Teach him that he's just like everyone else, expect him to teach everyone else about his differences or expect that everyone will understand that he is different while treating him like everyone else.

Tuesday, February 20, 2018

First Contact

I shared Jacob's blog with him for the first time tonight. It started with a discussion at the dinner table about Jacob's horseshoe shaped scar above his left ear. For several years now, Jacob has been getting his hair cut short, high and tightish, and although he never noticed his scar in the mirror, he could feel it when he touched his hair. He was surprised to learn that he had surgery for a boo boo in his head. Tonight's discussion was about how our puppy Athena was spayed today and that she would probably have a scar where her stitches are just like Jacob. I asked him if he would like to see pictures of his stitches and he was very excited. I opened the blog on my phone and showed him his pictures before and after surgery - bandages, breathing tube, drain, and stitches. He was fascinated. Then I showed him a few posts where I had recorded words or approximations for words he used to say. He loved hearing the pseudo words, trying to guess what they meant, and then reading what they were. I showed him pictures and a video of his constraint therapy. He was bothered by the fact that his right hand used to work and now it doesn't work so well. I explained to him that his hand didn't work so well back then but that he was so young that he did all of his exercises and made it stronger. I told him that as he got older and could talk back, he decided that his hand didn't work - but it does and it will whenever he is ready to exercise again. It was a break through. A revelation. For him not me. I have always believed that the work he did when he was very young trained his brain and his muscles to make that hand function. He willed his little body to do what it could not or should not be able to do. We stopped pushing all of the additional therapies so he would be able to just be. I hoped that when he was older he would decide to work on his hand again, as if he was in training. Maybe he will maybe he won't but tonight I saw his realization that if three year old Jacob can use his hand, then nine year old Jacob can too. Anyways, Jacob asked if I could put the pictures and videos and stories on his phone when he gets one. I explained that it was all saved for him on a website and he could read it when he's older. I am so thankful that I have this blog to share with him.

Sunday, January 10, 2016

I have not visited this page in more than a year but the story is far from over. Jacob's miraculous progress has continued of course as well as my pursuit of surgical interventions (tendon transfer surgery) and therapies. Jacob was exited from Speech Therapy last school year and qualified only for OT and PT during the Extended School Year services. He was promoted to the first grade this year. Surprisingly, academics have not been the greatest concern... During a meeting with Jacob's IEP Team, I asked about Jacob's relationships with his peers. His teacher responded that he was one of the most sought after students in the class. While that may have been the case in the classroom, Jacob had never been invited on a play date or even to a birthday party. I asked about teaching him social skills, about personal space (no kissing, ask before hugging) and reminding him to wipe his face so he doesn't drool or spit on other children. I also brought my concerns to Jacob's pediatric neurologist who said there was no cause for concern. He was invited to a birthday party at the beginning of the school year and has since joined the Tiger Scouts. He is developing a sense of belonging and is reaffirming my own belief that his greatest gift is his care and concern for others. Friendship will follow.

Friday, April 18, 2014


I have been avoiding the blog for many months because the last time I posted, I had almost killed Jacob. Since his near drowning incident last July, Jacob has been taking private swimming lessons. And private karate lessons. He also potty trained last November after he turned 5 years old. He can write his first name and recognizes numbers. Jacob continues to be amazing. Seriously. We never really knew what to expect in terms of his development, just that he would be delayed. But nobody told him. I spent a year or so cataloging every word and approximation he ever said because I didn't know how his speech would ultimately develop. During the latest cycle of his IEP, he almost didn't qualify for speech services because of how well he speaks and understands. Time and intervention. Jacob is also playing t-ball this year through our community's "Challenger Division" for children with disabilities. Jacob is our Jim Abbott (MLB pitcher born without a right hand). I watched a video of how Jim Abbott played and then showed Jacob how to tuck his mitt under his armpit to get the ball out and throw it. Our next adventure may be a trip to New York this summer. We are waiting to hear if Jacob has been accepted to participate in a study to evaluate bi-manual therapy (using two hands as opposed to only using the affected hand). Research. Progress. I will post again once we know something...

Thursday, August 8, 2013


A few days before the Fourth of July, Jacob was taken by ambulance to Hasbro Children's Hospital. His medical diagnosis was near drowning. Jacob tripped and fell into a pond feature. Matthew tried to pull him out and then ran to get me. I pulled Jacob from the water and he cried hysterically. We called 911. This was worse than seizures... worse than brain surgery. When I pulled him from the water my inner voice said this can't be the end. I heard the friend we were visiting in my ear say over and over I know CPR. When I saw Jacob, he was peaceful and he was looking at me. When she saw Jacob, his eyes were closed and his lips were blue. I saw what I needed to see to know that he would be okay. And he was. I was not okay for a few weeks. Post Traumatic Stress. The image of Jacob was in my mind everywhere I looked for days and days. Now I only see it every once in a while. This was a warning and a reminder. No matter how much progress he has made, no matter how well he has adapted, Jacob will always have special needs and I will always need to remember that he is special and never EVER take that for granted.

Saturday, May 11, 2013

Potty Talk

The potty continues to be elusive. I am convinced that Jacob has not yet developed the motor control necessary to effectively respond to the sensation of having to go. This morning Jacob took his own "night-night dipey" off and threw it in the diaper pail. Then we forgot to put on a Pull-Up. Jacob told me he had to go poop so I put him on the potty and he went pee. Then an hour or so later, he said he had to go poop again. But as he was walking towards the bathroom, I saw something strange in the hallway. It was no more than a few inches tall and quite sturdy, but ominously brown. Poop. Anyways, the fact that Jacob went without wearing a Pull-Up and told me he had to go two times this morning is the most progress we have had in two years. His muscles are beginning to work for him, the motor control will come.

Friday, May 10, 2013

Mrs. Dugan

Jacob's preschool teacher Mrs. Dugan was surprised with the Golden Apple Award after April vacation and Jacob and I attended the ceremony. You can see him holding the banner in front of Mrs. Dugan at the end!

The Golden Apple Award

Thursday, March 21, 2013


We were visited by the social worker the day after Jacob was admitted to the hospital to begin a course of ACTH to treat Infantile Spasms.  She informed us of the challenges that parents of children with special needs face and indicated that many marriages are unable to survive these challenges.

This was not our fate.

But our relationship was tumultuous at times, especially in the beginning.  He was 18 and I was 21. He was working at a fudgery and I was working at an ice cream shop.  After much crazy behavior in between, we married when he was 27 and I was 30.  Within our first year of marriage, we bought our house and had our baby Matthew.  Before our third year, we had our baby Jacob and seven months later, he was admitted to the hospital.

We did some growing up before Jacob but after Jacob, we grew together and for each other.  Matt gave up drinking and I gave up bitching.  Just kidding - that will never happen.

In the darkest days, when I could barely breathe, when I wished to God and to my grandparents who had passed to please, please heal Jacob, I had Matt.  And he had me.  I was in charge of the alcohol prep pads and band aids and he was in charge of the needles, syringes, and vials.  I carried on if the injection wasn't perfectly delivered and he calmed me down.

We are so different from one another, which may give us a collective spectrum of coping abilities.

What is certain is that I would not be able to face our challenges if Matt didn't know when to push me forward, let me loose, step aside, or hold me back.