We skipped school yesterday.
After Jeremy went off to work, Jonah climbed into our bed. An hour later Jonah woke up and asked: “Is it good morning yet?”
I looked out the window, it was raining wet snow. It looked cold and uninviting. Jonah said: “Mom I’m not going to school today right?”
Jonah asks both these things every morning and in this same order and same sentence structure. Most of us would say is it morning yet? Jonah thinks it’s said: is it good-morning yet? It’s something Jeremy and I let go of trying to correct.
I turned and looked at him, trying to make up my mind. Our room was so warm and cozy, outside was not. I impulsively jumped back into bed and pulled up the covers. “Nope today you’re absent.”
I knew exactly what he’d say: “Good, I can watch then?”
Lunging for the remote as if I had a say in the matter.
When I pick Jonah up from school he tells me exactly who was absent that day. He has done this everyday since Kindergarten. I’m always shocked by how many kids are absent. There are only 12 students in his class and according to Jonah at least one is missing almost everyday. On the day that all the kids are at school Jonah proudly announces at pickup: “Mom Mom all the kids were in class today.”
We stayed under the covers for hours. He watched Paw Patrol and I read Politico. There are days when I just don’t want to leave Jonah’s side. We ate breakfast in bed and stayed there until around noon when I finally pulled the plug. I had started thinking about making Christmas cookies.
Jonah loves to work in the kitchen especially if it’s for cookie making. For the most part it’s overwhelming to have him in the kitchen: knives, popping grease, boiling water and hustling. When I’m mentally prepared for a cooking date with Jonah, the time spent it’s delightful. We made ice box cookie dough, his dad can do the other half with him. Jonah loves to eat the cookie dough and I feel obligated to let him do it. My mom would give Jennifer and I each a beater to eat off of, we sat at the kitchen table and relished every morsel. Once we ate off the big chunks we’d proceed to lick every crevice of the aluminum blades until it was spit sparkling clean. I want Jonah to have those same type of sweet memories.
We spent the afternoon looking at Pokemon cards, reading books and playing board games. Then it was time to get some homework done. I look at him and wonder what is going on in his brain? Is it really this hard for him or is he just pushing my buttons? I think back to math homework how hard it was for me. I was so frustrated with my brain, I just couldn’t find the solutions. Does Jonah feel like this? I don’t know because he can’t articulate how he’s feeling. Writing sentences and trying to spell the words is the hardest for him. He can read a sentence and say a sentence but he can’t write it on his own. I try to engage him and coax him to think of a sentence. I usually end up writing my sentence down on the dry erase board. Then I hold it up and read the sentence. I attempt to make the sentence as simple as I can, so he can find victory in writing a couple of words on his own. I put the board down so he can’t just copy it, forcing him to think about the word and then write the word. He tells me all the time: “I just can’t do it Mom, I can’t I can’t I can’t.”
I feel like I’m torturing him. I know how this felt. The difference is I was going to college someday and I needed to learn it. In Jonah’s case… Well you know, I don’t have to put it in words. Something inside me is telling me to no’t let it go, to keep trying and not give up on him.
Last night and all this morning I thought about my personal 4th grade experience. I was reading chapter books non-stop, introduced to Judy Bloom and Beverly Cleary. I checked out every single book the library had from these two authors. My teacher had a book reading star chart for the class, I always had the most stars in the class. I loved to read, now the only thing I get to read are medical research papers and legal documents. Ladies do you remember: Are you there God? It’s me, Margaret? One line sticks with me: We must we must we must increase our bust. The bigger the better the more the boys will depend on us.
Are you there God? It’s me, Margaret. Is a critically acclaimed book, sadly this is all I remember of the story. If this is every girls take away, then know wonder we haven’t had a women president and men like Trump are ‘running’ the show.
It was in the 4th grade that I started to loose some of that childhood innocence. Two new kids came to our school district and into my class. We didn’t get many new comers in our town. I’m going to tell a story about the new girl and new boy, I’ll change the girls name. I’m going to call her Nasty Nancy, which is very close to what I actually called her in my mind.
We didn’t use the word bully back then, but by all measure the new girl was most certainly a bully. It’s as though being a bully came naturally to her, I figure it was just her personality. I have know idea where she is today. We’re not friends on FB and thankfully she moved again before 7th grade.
At the very beginning of the school year she cunningly asked me for my locker number. Thinking nothing of it I give it to her. Only my stinky gym shoes were in there, I was only 9, who thinks like a criminal at 9? Nasty Nancy did.
From thence forth, on gym days, she cut up our hallway class walking line until she was first. Once there she sprinted to my locker and opened it. Snagging my gym shoes, putting them on and wearing them as if they were hers. At first I thought it was some kind of joke. The gym teacher made her give them back. What was it with the 80’s why were people so obsessed with Nikes? That is a joke. She liked them for my rainbow shoe laces.
I’d fight her off at the locker. She elbowed me, pushed me away hard and spit at me. I was now scared of her, this was not normal behavior. I got her in trouble, I was a school teachers daughter and pulled rank at school. Nasty Nancy was a minister’s daughter, the irony. They assigned a junior high girl to watch over us in the locker room. Nast Nancy moved on.
Nancy was in my Blue Bird troop too, not only did I have to spend the day with her, but my weekends too. Insult to injury, but it did give me the opportunity to see some of her home life. Her parents appeared to be good people, her house was nice and clean. My 9 year old self wasn’t able to deduce what made her tick.
Marlo was the other new kid. I’ll use his real name, he’s my friend and won’t mind. Marlo is black, besides his older brother he was the only black kid in our school. I could never hide his identity nor would I want to. Marlo wether he wanted to be so or not; was a game changer for the class of 91. Probably even for our whole town. lol
In class Marlo sat to the left of Nasty Nancy and I sat on the right. On this particular day, Nasty Nancy got up from her seat to talk to the teacher. Marlo turned and smiled at me, getting my attention. He walked to the pencil sharpener and got his pencil nice and sharp. I knew what he was going to do before he did it and I giggled. He walked back to his seat, as Nancy walked back to hers, Marlo leaned over and held the pencil under her butt. She sat down, the pencil disappeared. It was not the funny scenario that Marlo and I had envisioned. You know like the scene we saw in cartoons; a little ouch then springing up in the air. The pencil literally went up her butt. Our eyes bugged out in shock. Nancy started screaming and crying. This is a memory marked in my mind forever.
I often wonder what it’s like in Jonah’s 4th grade class. What if someone at school relentlessly bullied Jonah? Stealing his shoes and making him chase them around the locker room, no adult in sight. Jonah is nine but he’s as innocent as a four year old. He could easily be made fun or ridiculed or taken advantage of. Two things reassure me that he’s ok at school. Jonah is an excellent judge of character, he might not understand what the bully is saying but he does understand the intention and he will react accordingly. Secondly he has a 1 to 1 assistant.
There was another major event in my 4th grade class. One of my classmates drowned.
At the moment Jonah is obsessed with having one of the neighborhood boys come and play with him. I really like the kid and his family, but this boy is lightyears above Jonah. At these type of playdates Jeremy or I end up playing with Jonah’s guest, because Jonah just isn’t up to their speed. It’s hard on me to hear the social interaction, Jonah just doesn’t get it. I’m not sad because Jonah isn’t like them. I’m sad because I know that Jonah will someday start to decline and the opportunity for these playdates will end. This is what I struggle with the most these days. How much of his life am I missing by working my ass off to save his life?
It has been a really hard year. People don’t know what their financial picture will look like at the end of the year or in the years to come. I didn’t foresee how hard it would be to fundraise in this current climate. We raised half of what we have raised in the previous years. I swallowed my pride and asked someone to donate a hefty sum, fortunately that person did. The check has bought us some time.
This year Mari and I have been wrapped up in and focused on our awareness campaigns. This coming year JJB will have to think hard on our priorities. We spent a lot of our time and resources building the MPS patient registry. Which I don’t regret our time spent has paid off, our registry is over a 1,000 registrants strong now we have two drug companies using it to put out surveys. I’m committed to Mission Hide and Help and getting that program up off the ground. This year our Natural History Study will most likely rule my world. Realistically I only have time for one additional JJB project, leaving Mari to do everything else on her own. Phoenix Nest needs attention too. PN has three ongoing NIH grants in the works and we’re pursuing the next steps for clinical trial, which is no small feat. Something will have to change in order for us to continue at this pace.
I leave myself with this post that my Aunt Melissa wrote. The highlighted portion is what keeps me from quitting. To see the picture that Melissa is talking about go here. https://www.crowdrise.com/o/en/campaign/jonahs-just-begun1/melissawilkie
Let me tell you a little about the photo I choose for this fundraiser. This is a spot on the South Yamhill River in Oregon where I grew up. This is the spot that makes me think of my family, and how much I love them. It was here that Jill and I and several of my nieces floated on tubes this summer, and talked about the reality of what Jonah faces and the research that is being done to find a cure.
You see for many years we were able to live blissfully unaware of ultra-rare diseases. Life moved along, kids grew up, and all was well. I'll come back to this last sentence.
Jill went to college, traveled, and ended up in New York where she met, fell in love and married Jeremy. As these two began their lives together and started a family, they had no idea that they both carried a mutated gene that would change their lives forever.
It was when an astute pediatrician informed Jill and Jeremy that Jonah had something that indicated he needed further testing that they began this journey, learning about Sanfillipo type C. It is at this point where I want to think about a day sometime in the future. A pediatrician should be able to tell this family that this is a treatable disease. Kids like Jonah should be in the category of "Life moved along, kids grew up, and all was well"
This is where I need your help. Jill and Jeremy have worked tirelessly to bring together kids like Jonah, scientists, funds in order to understand this disease, and how to treat it. Every step brings hope for kids in the future. Kids in families who don't even know they are going to need this cure.
Today in this season of family, love, and giving, I'm asking my friends and family, people that I love, and who love me to contribute to saving someones life. Someone I don't know and someone they don't know, yet.
Thank you in advance for your generosity.
Jill's Aunt Melissa
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| Santa noticed Jonah's hat and was inspired to show Jonah his Pokedex. https://missionhideandhelp.org/ |
