What is a REAL Disability?

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Jack is blessed with many friends, but he has one bestie. A guy that shows up to our house and Jack doesn’t hesitate to get up and race to greet him at the front door. Even, like today, when Jack had been sitting on the toilet. I apologize to any neighbors who happened to be looking in our windows at the time. Jack can’t help himself when Peter arrives.

But that is not today’s story.

Today’s story is about what happened when Peter and Jack left Speir Drive to head to their favorite spot — The Able Baker. Maplewood Village being a weekend destination for many local folks, the boys needed to do a few loops before finding a free parking spot. It was a handicap space nice and close to their favorite bakery. It’s not just Jack who qualifies for the “luxury” of convenient parking. Peter – Jack’s buddy and Community-Based Instructor/Mentor – also has some challenges. Peter got out of the car and then helped Jack out of the passenger-side, when a women in a minivan stopped her car and loudly ask if they would please, “empty the spot for someone with a real disability. Someone with a wheelchair or walker.”

I don’t know what exact words were exchanged, but Peter was forced to explain that he and Jack were REALLY disabled. That they both qualified to fill the spot and for safety reasons they needed to be close to their destination. I’m sure that Peter said it in a way that was polite and clear. THAT’S who Peter is.

I might not have been polite, but I would have been clear. Judging peoples limitations from the front seat of a minivan is ridiculous and ranking disabilities is crazy. I’m the first person to shame people for needlessly using parking reserved for people with disabilities, but if someone has the placard who am I to need to know WHY they have it. Maybe their disability requires them to use a wheelchair or a walker. Perhaps it’s a heart issue or a back problem OR maybe it’s that maneuvering their companion through a crowded parking lot is dangerous.

So, if you were in Maplewood today and happened to see two handsome young men, enjoying some large cupcakes before getting into a car that was parked in a handicap spot – don’t worry. They earned the spot.

Love, Jess

mixed emotions, a banquet, and a birthday – GO COUGARS!

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I’ve had mixed emotions anticipating this spring. So many things to celebrate, but each celebration highlights that we’re closing a chapter. There have been a lot of “lasts” lately and tonight is another one — the last Columbia Girls Lacrosse Banquet.

I’m going to be honest. If you’ve had kids who’ve played sports, you might not agree (maybe I’m a terrible mom), but I spent many years dreading the lacrosse season. It’s not that I don’t enjoy watching the sport, it’s that the season seems to have us spectators either wrapped in blankets, freezing OR trying desperately to find a sliver of shade to protect us from the hot sun. I also would look at the lacrosse schedule at the beginning of each season and wonder why on earth we couldn’t just play neighboring towns – instead each year we needed to shlep all around northern NJ to sit in the freezing cold or scorching heat.

Then, there’s the driving. I must have inherited it from Mymom. She HATED being carpool mom. My mother once said to the headmistress of my elementary school, “What do you mean you removed the bike rack because of all the snow this year? It’s going to take Jesse an hour to get to school without her bike.” I haven’t avoided getting behind the wheel as much as she did, but those after-practice pick-ups that hit right in the middle of dinnertime made me crazy.

For years I would use the “Jack excuse”. My friends helped out with the practice pick-ups and Jack would be used to make an early exit or avoid games altogether. “It’s too cold for him.” “It’s way too hot for my boy.” “Poor Jack can’t get much sun with all his medication.”

Luckily Dan was the opposite. He didn’t seem to be bothered by the heat or the cold or the miles. Not only did he coach Anna’s team for years, but he would rearrange business trips so that he wouldn’t miss games. And, when he was there, everyone knew. “Loud Dan” isn’t his nickname for nothing!

As this lacrosse season approached, I changed my tune and became full-blow LAX MOM. I didn’t want to miss a minute of the season – the last season. I kept blankets and extra jackets in the car and, as the heat arrived, I had an umbrella to protect Jacko’s skin from the sun. I picked up Jack early from school so that we wouldn’t miss the first face-off of games and used WAZE to get us around towns I’d never heard of. The cold, the heat – nothing really bothered me as long as I could watch 22 on the field.

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I’m so proud of Banana. I love watching her bound down the field with the same determination she has for all things. I love saying “She gets all her skills from her mama.” And, I love that everyone laughs because they know that it couldn’t be farther from the truth. Dan and I made her, but Anna is her own girl . . . young woman AND she is amazing.

Columbia Girls Lacrosse has had a great season and I’m so glad I didn’t miss it. They might not have the best record in NJ, but they have heart and they kicked plenty of a$$ this year – go COUGARS!!!

Today is also Jack’s 11th transplant birthday. Happy Birthday JackO!! We are thrilled for him, but letting this day be about his sister – his favorite athlete and human;)

Love, LAX MOM (last day)

PS Mymom didn’t love driving us around, but she always had homemade bread with fresh butter and cinnamon-sugar waiting for us when we got home from our walks/bikerides.

 

 

How to raise a great kid – HANDS OFF!

I had a super stressful dream last night. Not my typical, “I forgot to wear pants to the grocery store” dream. This was new and I woke up sweating.

I dreamt that I was having trouble with my college essays and not sure if I would get my applications done on time. I could read into it, but I think it’s pretty clear what my subconscious was trying to tell me — it’s time to relax and go back to HANDS OFF parenting Anna.

The truth is I’m usually a pretty hands off parent with Anna. Not to say that I don’t grill her after every party and open her report cards, but both Dan and I generally allow Anna to make most of her choices without too much guidance. Safety is (of course) important, but other than a curfew, she has very few rules (and even that is pretty negotiable).

It started when Jack got sick. Anna was only six years old and her family scattered. She went from having a father who was available every day to toss a ball with her after dinner and a mother who was always finding random excuses to show up at her school, to not knowing who would be home to tuck her in bed each night. She knew her family loved her, but she also knew that if she needed something, sometimes it was just easier to make it happen herself. Siblings of special needs kids have a perspective that their “typical” peers don’t.

Although I appreciate how fun it would be to helicopter around and watch everything Anna does while adding my two-cents, I just don’t have the time or the energy. If Jack needs me, it means he needs assistance with eating or needs his diaper changed. I can’t NOT do it. If Anna has a question about her homework, Google is faster than waiting outside of the bathroom door.

As IF I could help with her homework.

Don’t think that Anna’s not getting any attention from me. We talk and text throughout the day about everything from clothes to friends to our relationships with God. We have breakfast and dinner together (“breakfast” is her eating an Eggo waffle and me drinking coffee, but dinner is an actual meal that I have prepared). We are so close that we are starting to look like each other. When people see us together they call her “Mini-Me” and it’s not just that we look alike, our mannerisms and senses of humor are the same – it’s almost creepy.

We’re close – what I mean by HANDS OFF parenting is that I don’t micromanage her. I don’t watch over her constantly to make sure she is doing things just so. She needed to get her driving permit a couple of weeks ago and all I said was, “Great. Just ask around and tell me who to hire. I will make the first phone call, then it’s all you.”

When she was planning her course-load for junior year, instead of digging through all the choices, Dan and I just sat back and watched her come up with her perfect schedule. My only input was “I think I would prefer AP Art to AP Calculus, but if that’s your thing – have at it!”

We trust Anna because she has proven that she can be trusted. She is a great student and has a wonderful circle of friends. She makes good choices (mostly – she IS a teenager). She is kind to her brother and when I watch her interact with other people I am proud of who she is.

We’ve been so relaxed with Anna that I was surprised that Dan and I climbed on board the “college train” with such intensity. Looking through college books, long talks around the dinner table, planning trips to see schools. Perhaps it’s a distraction from NOT working on the project with Jack or maybe it’s just super fun because Anna has an impressive transcript —  And, maybe part of it is that Dan and I really, really, really want to go back to college ourselves;). But, I need to be careful. I’ve found myself checking Powerschool daily and questioning grades, looking at that giant book of colleges even when Anna isn’t home, thinking about essay topics and waiting anxiously for the next round of ACT scores. I’m getting dizzy with all the information and Anna is not appreciating the frantic input.

“Mom, you know I have this covered, right?”

Yes, I know you do baby girl. You have turned into a remarkable young woman and I know you will do amazing things. Mom will go back to HANDS OFF parenting. Just let me know when you need me.

And, when can we plan that trip to Virginia and North Carolina . . . and Boston – we need to go to Boston!dsc00726

Love, Jess