lucky mom

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Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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Mother’s Day – to Club or not to Club?

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Our last brunch at The Club. This was BEFORE the meal.

 

Brunch is a lovely invitation, especially for Mother’s Day. The idea of not being responsible for the cooking or doing the dishes is always welcome. And who doesn’t love being showered with a little extra love on Mother’s Day (while getting to spend it with Mymom)?

So when my folks called to extend an invitation for Mother’s Day Brunch at their country club, my first reaction was a smile, but quickly my mind started to race.

Does Jack’s sports jacket still fit? I’m fairly certain that he ate his last tie. Could use one of Dan’s? I wonder if he could reach a bow tie with his mouth. Does Target sell bow ties? I’m not spending another $80 at Vineyard Vines for a single-time use.

Then, I started thinking about all the other pitfalls that might be lurking at the country club. We’ve enjoyed many wonderful times there, but Mother’s Day is sure to be a scene, and that just adds to potential problems we could face. A simple outing for brunch can be complicated for our family, especially when there’s a coat and tie involved.

The diaper bag needs to be packed. We’ve changed it’s name to “The Satchel of Freedom” (thank you Peter). The new name focuses the attention on the fact that the bag allows us to rome free, but it’s purpose remains the same. It’s full of diapers and wipes and a change of clothes. The change of clothes includes socks. When Jack goes to the bathroom, it’s not uncommon to require a FULL set of new clothing. Do we have a another set of “fancy clothes” to fill the satchel?

This brings me to the next concern when going out for a meal with Jack. We need to consider the bathrooms for any needed “costume changes”. When Jack was a little younger, I could get away with bringing him into the Lady’s Room and sneaking into the handicap stall without attracting too much attention. At seventeen, Jack is harder to sneak in without creating a lot of puzzled looks. People try to be polite, but I feel the stares as I start to walk Jack toward the bathroom. His hopping gait doesn’t help staying inconspicuous. Sunday at The Club might be crowded. Is there a private bathroom hiding somewhere?

Yikes! Sunday is going to be really REALLY crowded.

A big crowd means that they might squeeze in extra tables. Now that Jack has added hopping to his repertoire of behaviors, if tables are too close together, he tends to knock against people causing quite a scene. It’s particularly awkward when he bumps a table and then tries to snatch a piece of bread off a stranger’s plate. Dan and I have both learned many funny one-liners to try to apologize for such instances, but it’s still not fun.

This isn’t going to work.

“Let’s definitely get together Sunday, but is there any chance we could go somewhere else? Somewhere Jack friendly.”

Mymom gets it. Although she loves showing off her grandchildren, she has helped more than once assisting in a complicated clean up, and she understands that Mother’s Day may not be ideal at a crowed club.

I made a reservation for an early dinner at a local restaurant that has broad isles between tables and large, private bathrooms. We will get ready early in case of any unexpected delays, making sure Jack is wearing dark colored pants to mask any spilling/leaking. No jacket or tie required. The Satchel of Freedom will be packed and ready for any unfortunate events and we will draw straws to see who gets to feed Jack.

I’m much more relaxed with this new plan, but we never leave the house without crossing our fingers. Going out with our boy is always an adventure.

Happy Mother’s Day!

Love, Jess

“special” moms

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What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.

Poop, shower and shave

Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

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Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

listen to your mother

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Generally, I do my best to avoid failure. I rarely set myself up for disappointment. But, thanks to the encouragement and support of a good friend (actually a huge pile of friends and family, but one friend who actually sent me the link and twisted my arm a little), I went out of my comfort zone and auditioned for LISTEN TO YOUR MOTHER – a live production (hosted in 39 cities across the country) celebrating motherhood. An incredible event where a cast of local writers share their stories “ . . . on the beauty, the beast, and the barely-rested of motherhood, in celebration of Mother’s Day.”

I went to the audition to prove to myself that I could do it. If sharing our family’s story is the goal, I need to start taking some risks. Knowing the caliber of the cast last year, I doubted that I’d be considered, but needed to give it a shot.

I left the audition sweating and wishing that I could have a do over – an opportunity to read the piece again, minus the tears and the shaky voice. Writing alone in my den and hitting “send”, is very different then sharing the words out loud. But, I did it. I stood up and shared a piece of my writing about my family, my boy and a reoccurring dream.

Returning home, I was proud of my attempt and already considering what I could submit next year. When I got the call that I’d been selected for the cast I was shocked. Literally, I found myself running around the house like I’d just scored a prom date. It’s been over a week and I’m still overwhelmed by the news. No disappointment this time!!

Buy your tickets now. Seriously, it’s almost sold out;-) YIKES!!!!
http://listentoyourmothershow.com/northjersey/

Love, Jess