never too old to dress up;)

I realize that my children are 18 and 20, but they both still LOVE to dress up for Halloween.

Being off at school, Anna left few hints of her plans, other than an Amazon purchase that I did NOT approve (you still owe me $30 Banana). She had two parties this weekend and sent me photos of her costumes. Although I know that it’s inappropriate for my underage girl, I couldn’t help but laugh at her first costume – Whispering Angel.

IMG_3673And, who doesn’t love a good vampire?

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I had to be more hands-on with Jack’s costume. I spent weeks trying to find a clever idea, when it found me at Target last Friday. A large flamingo hat almost screamed at me from an isle full of Michael Myers, Demogorgons and Black Panthers. I introduce you to The Dancing Flamingo!! ****

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I got to spend some time with the Flamingo at the Trunk & Treats event at CPNJ Horizon High School. Always fun to hang with Jack and his schoolmates AND I got to sneak in a little last minute campaigning. Not sure if you’ve heard, but there is an election coming up next week . . .  Jack is running for president!!

 

Tomorrow I head down to Philadelphia for the ALD Connect Annual Meeting and Patient Learning Academy. This year they are hosting a book club where I am leading the discussion on Smiles and Duct Tape. I’m looking forward to spending time with many of our ALD community and introducing Jack (and Dan, Anna, Mymom and Nonno) to the crew.

Love, Jess

**** In case you are new to Smiles and Duct Tape, Dancing Flamingo has been a nickname for our boy for a while. To learn why, CLICK HERE.

 

 

what is normal?

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The other day I was talking with a friend who was bitching about her teenager not doing their chores. She was going on and on about how hard parenting is, when she suddenly stopped mid-sentence and looked at me, “Sorry Jess. I shouldn’t complain to you about all this normal parenting stuff.”

At first I didn’t understand why I shouldn’t be the appropriate audience for her complaints. We’ve been friends for years and I like to think of myself as a pretty good listener. Then I realized what she meant. She shouldn’t complain to me, because parenting for me isn’t normal.

False.

I’m actually a very normal parent. Not just because I have one typical child, but because for me parenting is just about loving your child and doing whatever they need to keep them comfortable, safe and happy (with limits on the happy part if it includes super late curfews, sports cars or jellybeans for dinner).

Maybe my parenting doesn’t look like everybody else’s, but what the hell is normal anyway?

nor·mal
/ˈnôrməl/
adjective
adjective: normal
1 1. 
conforming to a standard; usual, typical, or expected.”it’s quite normal for puppies to bolt their food”

For me it’s completely standard; usual, typical AND expected to:

— Separate laundry, not by light and dark, but by urine-soaked or not (and I sometimes sneak some urine-soaked clothing in with the non urine-soaked stuff).
— Buy diapers in bulk – both XL Goodnights and XS Depends (one of each and we can sometimes prevent leakage).
— Help my son walk up/down the stairs.
— Bathe my 20-year-old son.
— Help my son get into the car and buckle his seatbelt (and check every few minutes to see if he has unhooked it).
— Check on my son at least two times during the night.
— Hydrate my son through a tube in his stomach.
— Change that tube ever couple of months.
— Change my son’s diaper in a parking lot to avoid changing him in a dirty public restroom with people asking, “Why are you bringing him in the bathroom with you?”
— Medicate my son three times a day.
— Check my son’s mouth periodically to retrieve coins, jewelry, etc.
— Brush my son’s teeth twice a day and lie to his dentist twice a year when I tell him that I also floss Jack’s teeth.
— Infuse butter with marijuana and bake cookies to help my son walk, sleep, and eat.
— Feed my son and, when he holds food in his mouth for too long without swallowing, bringing him to the sink and scoop it out of his mouth.
— Bring pee pads any time we go to a friend’s house so that we don’t ruin furniture.    — Only have friends that can handle having their furniture peed on.
— Sing and dance to 70s music in the bathroom to entertain my son while he sits on the toilet for 30 minute stretches.

Some of you might find this list extreme or sad, while others may have similar lists of normal. Either way, know that even though parenting can be a little more hands-on or complicated or messy, anything can seem normal after a while AND Jack makes all these duties quite manageable (and often rather funny). If you don’t believe me, come spend the day with us. I can promise you that you will see a very normal home. And, I can’t speak for every special mom, but one thing that makes me feel less than special, is when people act like my family isn’t normal.

So, I encourage everyone to bitch all they want to me about their kids not making their beds or not mowing the lawn or sneaking a beer from the basement fridge or procrastinating on they college essays.

Treating me normal makes me feel special.

Love, Jess

two hours, some hugs, a godfather and a shave

Anna headed north this weekend to visit her boyfriend, Will, at Fordham. We tried not to give her a hard time for choosing him over us – after all, she’s in college, we just saw her two weeks ago and she’s in love. We followed her through texts and social media as she explored his campus and then headed to see friends at NYU. It’s still strange going from knowing every detail of your kid’s life, to hearing about adventures after the fact — or watching them realtime on my iPhone.

She and Will decided to head home Saturday to hangout with some pals who were in town. We had plans to go to visit family in Pennsylvania, so we left Anna with strict instructions to watch the dogs, lock the doors and NOT have a party. Then we watched her come home for the first time in two months through our Nest cameras — I know it’s creepy (we have them for security).

Anna had a great time (and no party that I could see from my iPhone) and we also had a great time seeing the Perry/Brooklyn Torrey gang, but as soon as we ate breakfast Sunday, we said goodbye so that we could catch Anna before her Bolt Bus took her back to Charm City. It left us with a two hour visit with Bananz.

Two hours with our girl doesn’t sound like a lot, but we made the most of it.

Walking in the door of our house I needed to look passed the stuff littering the foyer floor and pile of dishes in the sink to focus on loving our girl. We hung out around the kitchen island, enjoying sandwiches from the Millburn Deli (Anna’s got her Godfather fix) and hearing all about how everyone is doing. Funny that when I asked about how her pals were doing, Anna started with unfamiliar names. It took me a minute to realize that she was talking about her Hopkins friends — another reminder that things have changed a bit. We did eventually hear about the adventures of the kids we’ve known since elementary school — I miss all those wonderful humans and am thrilled to hear they’re doing well.

After lunch, we got to do what has become an important activity when visiting with Anna. Shaving.

I hate shaving Jack. For some reason shaving my twenty-year-old son, while he’s being held down making horrible faces, is painful for me — as if it puts a spotlight over how different our lives are. Since Anna left for college, I look at anyone who walks into our house as a potential barber. Be warned — if you come for a visit, you could be next. We’ve had a few good volunteers, but no one is as skilled as Anna. She manages to keep Jack smiling and gets every last hair without a nick or a scratch.

The barber decided it was time for to say goodbye to the goatee. I rather liked it, but it’s barber’s choice at our house, and he does look awfully handsome!

After the shave, it was time to say goodbye. It’s always hard to say goodbye to Bananz, but we will see her in two weeks for the ALD Connect meeting and my nephew’s baptism, and Thanksgiving is right around the corner!

I’ve got to say – I am getting better with being a college mom.

Love, Jess

Did you ever read Anna’s college essay? If not – CLICK HERE!

United to Beat Disease

I like to surround myself with people smarter than I am. While some people might find it intimidating, I find it thrilling to witness brilliance and like the challenge of trying to blend in. And, if I know I’m really … Continue reading

Impractical Jokers After Party!

Last Monday we were invited to be in the audience of the Impractical Jokers After Party – an after show where the Jokers sit around and talk about the latest episode. 

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When Uncle Matt shared that he had scored us tickets, Dan and I fought each other for who would tell Jack. Jack loves a lot of things – fresh cookies, 70s classic rock, cute girls, long walks on Block Island – but one of his absolute favorite things is the Impractical Jokers. I know when their show is on in the den, because I can hear Jack laughing from across the house. Jack, the kids who doesn’t say a word, can fill the house with his laughter when his buddies are on. That alone is enough to make us all fans of the show, but the truth is that our entire family is addicted to Impractical Jokers. It’s ridiculous. Humor made for immature teenage boys, but appreciated by a mature pre-med college girl, a finance guy and a middle-aged housewife.

It was a great day, but a little exhausting. The small audience was on folding chairs surrounded by wires and lights and cameras swinging from the ceiling. Imagine four hours of holding Jack down so that he wouldn’t pop out of his chair to race across the room to tackle (maybe even lick) his favorite celebrities. It would have been embarrassing, but I was even more worried about him taking down a few innocent bystanders and a load of expensive equipment.

Good news – Jack didn’t manage to pop out of his seat, nobody was hurt, all the fancy cameras were spared, and we had a great time!

Thank you Uncle Matt for making Jack’s dreams come tru — THAT is not a misspelling. Impractical Jokers in on truTV;)

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Today Jack and I are heading down to a Clinical & Pharmaceutical Solutions through Analysis conference in Philadelphia to share our ALD story. Not too sure what to expect, but guessing that there won’t be too many cameras and that we shouldn’t walk around asking people, “Where’s Larry?”.

Love, Jess

The After Party episode is scheduled to air on November 28. If they show the audience, look for us! We were on the far right in the second row. Jack had a ridiculous smile on his face the entire time, Dan was clapping so loudly that he was scolded (true story), and Matt and I were frantically holding down the boy.