Back from 35 days on the road. Can’t say it’s entirely good to back in Brooklyn. It’s non-stop rain here, mixed with clear skies and extreme humidity. Dropped my computer last night, it nonchalantly slipped off my lap hitting the floor head on, on the corner. That's the sweet spot right there. It likes cracking your elbow on a marble counter. Shooting stars every time. Locked out of my apartment building this morning. Had just dropped Jonah off at camp, that’s the good thing. The door lock was broken, I stood in the pouring rain and waited for someone to come out so that I could go in. Never said I didn’t believe in Mercury retrograde. Usually I get good news during this time of year, vary rarely do I get the communication and travel breakdown crap.
Spent the bulk of our 35 days in Oregon, I needed my mom’s natural crafty talents to help me on our next fundraiser. I also needed space for our set design. Can’t build a 10x10 gingerbread house when your largest room is 10X10. If we had the same type of camp options in Oregon as we do in Brooklyn, I’d stay the whole summer, just to escape the ickiness of NY summers. Jonah needs interaction, if he doesn’t get it there is hell to pay. I left many projects unfinished for my mom to wrap up. Sorry mom. Our payment is leaving you to enjoy a peaceful rest of the summer. You can plug your t.v.’s back in and watch CNN now. Jeremy is back at work shooting Elementary, he only got to spend a week with us in Oregon. It would be nice if filming schedules followed the public school schedule.
Jonah had a wonderful 10th Birthday at his cousins house. He just eats them up. He got everything he wanted and ate his cake too. I’m still waiting on my Bday wish, it’s been the same one for the past 8 years. I did have an awesome Birthday, I asked that people buy me gifts from my amazon wish list. All my gifts will be re-gifted to our Halloween fundraiser auction and raffle tables. If you want to help polish off our wish-list in honor of Jonah’s Bday, I’d greatly appreciate it. Think of it like this. Jonah absolutely loves the JJB fundraisers. He assumes that it’s his party that we’re throwing for him and all of his friends. We’re like the coolest parents like that. Plus you will be saving me from having to beg for donations, walking up and down 5th Ave in the torrential downpours and blazing heat. You can get us something here and consider it your good deed of the day and know that I love you for it. https://smile.amazon.com/gp/registry/wishlist/3MR2XEXXAI90J/ref=nav_wishlist_lists_1
Jonah is still blissfully ignorant to what is happening behind his back. He’s back at camp now and enjoying every second of it. So much so that he refused to stop what he was doing to use the bathroom before they got on the bus headed to the Natural History Museum. Jonah alerted his counselor that he had to pee when it was too late. Thankfully I had an extra pair of underwear and shorts in his bag. When I heard what happened I thought as I always do… I hope none of the other kids saw. Camp left me a message saying that it didn’t phase him at all and none of the other kids saw. When Jeremy got home Jonah told him about the dinosaur bones and all the cool cavemen.
Oregon-Washington-California.
There were several reasons as to why we stayed out west that long. First being I needed help. Actually all points came down to me needing help. I didn’t want to fly out to the west coast twice with Jonah in a month. I wanted Jonah to have a special 10th birthday surrounded by people that loved him unconditionally. Lastly I needed my sister to help me with Jonah while at the International MPS conference.
Jennifer is absolutely fantastic with kids, she gets into their brains. She’s got Jonah down. I would not have survived that conference without her. This is how it all kicked off. On the way to the airport, we stopped at Starbucks. We all had to pee. Jennifer walks in and takes the first stall. The second was occupied and by the noise and smell coming out, it was going to be occupied for awhile. Jonah and I quickly stepped back outside and waited. The occupant of the first stall came out, Jennifer was washing hands behind her. The women made quick eye contact with me and started to talk, she turned passed me and kept talking. She said: “He shouldn’t be in here.”
I absolutely can’t stand passive aggressive comments. If you want to tell me something that is uncomfortable for either of us, have the courage to say it to my face or don’t say it at all. I turned and tapped the women on the shoulder and said: “ My son is special needs, I’m not going to send him into the men’s bathroom by himself.”
Aghast- she had that stunned “oh gracious me” look on her face and in her demeanor. Reaching out for my arm holding it tight, she apologized: “I’m so sorry I didn’t know.. BUT he PEEKED at me!”
Seriously… Seriously… That’s hysterical. I’ll be laughing about this episode for years to come. He peeked at me…. Oh my.
We got to PDX and stood in line for over an hour. There were several families straight up moving with half a dozen cardboard boxes to other states or countries. A few of them brought everything but the kitchen sink. One family in particular was heading back to Taiwan, the dad only had a green card, no passport. Anyhow it was a mess. Jonah held his own, I was really proud of him. Jonah’s big reward for being good during the whole check in and security process is time on my I-Phone. But this time he hadn’t earned the phone beforehand. Okay unfair. I extended earning the phone to the day before. The day before the flight, in a fit of rage he kicked Grandma in her knees. Grandma is having her second knee replaced next month. So Jonah lost phone privileges before we even got to the airport. Knowing that he wasn’t getting the phone, Jonah was patient and polite at the airport. He knew that once on the airplane he could watch t.v. I let him have that reward. We had a bit of a layover. I didn’t properly prep Jonah for the fact that the second plane might not have inflight t.v. Lesson learned.
Jonah sat down in his seat and promptly demanded the phone. Jennifer was one row to the left behind us. When I’m with Jonah I always board the plane last. Thinking that the less downtime on the plane the better. We had a full audience when Jonah snapped. He reared up against the window and pummeled me with his feet. Screaming: “I want to watch!”
I was taking feet and fist in the face; trying frantically to calm him down. Most people probably would have whipped out their phone to pacify their inconsolable child. I felt the passengers astonished stares on me as I told Jonah: “We’re going to get kicked off the plane.” “Do you want that?”
I made darted glances at Jennifer, not wanting to make eye contact with any of the other passengers. Do we switch seats? I didn’t want Jonah to beat on Jennifer. Once he tastes blood, there is no going back. I can’t give Jonah the phone and I can’t switch places, it’s admitting defeat. I don’t know how I talked Jonah down. I tried not to cry while the other passengers continued to stare in disbelief. In debriefing Jennifer said that everyone in the seats surrounding us agreed to kicking the kid off the plane. Thankfully the flight attendants were preparing for take off and unaware as to what was happening in seats 22A and B.
The flight was short. We landed and met up with Mari and then Sean for an early dinner. Sean and I went over notes for our ‘big’ meeting. Jennifer took Jonah to the swimming pool. Mari and I caught up and prepped for the conference. Mari would be running the patient registry booth. Just before bedtime Jonah and Jennifer came back, Jonah makes a show of ripping his wet swimsuit off. Jennifer maintains composure as she tells their swimming pool adventure. It was fun, they met a family with 4 kids that accepted Jonah into their clan and they played nicely. A poop showed up and floated by Jonah. Jonah spotted it and immediately scooped it up and tossed it out. Jennifer buoyed in shock. A guest stepped in it. For the second time that day I went from horror to piss my pants laughter.
While Mari worked the patient registry booth I was busy with back to back meetings. Jennifer took Jonah out on daily outings, Lego Land, Sea World and the kids museum. It was a huge relief having her there. This conference has a science program running in tandem with family programs. You can pick which session you want to join, while your kids hangout in camp courage. The kids have outings and fun things to do at camp, but…. they have video games. From past experience I did not want Jonah sitting hanging out in camp courage with a video game for three days. He won’t leave it, it’s awful. Last year he pooped his pants because he wouldn’t leave the game. I’m constantly distracted by him and worried about what he’s doing. I’ll never go to another family meeting without Jennifer again. Jonah woke up every morning and asked for his Aunt Jennifer. He told me that he loved Aunt Jennifer so much because she made him so happy.
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| Aunt sandwich. |
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| With the exception of Sean, this is my support staff. In the purple polo is Levi's dad, he's there for the free dinner. In blue is Brian Bigger our gene therapy scientist and in the orange polo is Steve Gray, he tells me what to do. That's Patti Dickson our type D ERT scientists and that's Alexey Pshezhetsky in the black polo. What's with the polo's? Among other things Alexey discovered the gene that causes MPS IIIC. And you all know Mari, she made the reservations. |
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| Mari presents her first poster. This is a special moment for me. |
I sat in on one session for the parents. It was filled with recently diagnosed families. I usually pass on these sessions because I don’t want to relive the pain of the early diagnosis years through them. I’m glad I went. Listening to them talk about how hard it is to balance daily life, how tired they are, walking zombies. The house an absolute disaster, constantly on edge, eyes growing out on the back of their heads. Their Sanfilippo child abruptly knocking over their baby brother or sister, danger lurks around every corner. Yet through it all they fiercely love their children and are fighting for their welfare with every breath that they take. It’s sick that I take reassurance from them. We’re all going through the same episodes. I’m not alone.
Back in NY, planning our Halloween fundraiser “Little Gingerbread House of Horrors.” It’s Halloween, something has to be scary. But the theme is a sweet twist on Hansel and Gretel. Picture Hansel and Gretel travels to Candyland and meets a Witch. Planning fundraisers are hard work but it's a nice break from the slow and painful medical and legal stuff.
Brooklynites mark your calendars for October 28th, more details to come. A huge thank you to our sponsors: Park Slope Pediatrics and Park Slope Daycamp.
