A Birthday for Bananz!

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There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

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Dan, the man

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Happy Father Day!

Here’s a truth. I fell off the “Perfect Parent Pedestal” years ago. Jack and Anna discovered early in their lives that I am human. They adore me and respect me (most of the time), but they are fully aware that I am full of faults.

Dan still lives high up on a pedestal. He walks into a room, and both of his children light up. Anna’s in awe of her father’s knack for languages and amazed each night watching him play Jeopardy. There is very little he doesn’t know. And Jack – to Jack, Dan is a superhero. He is the person who takes him on adventures and doesn’t complain when there is a necessary bathroom stop.

Sometimes I’m a little jealous of Dan, but here’s another truth – he has earned his role as a superhero. Most men would cower at the challenges our family has faced. Most men would focus all of their attention on their careers or a bottle. Not Dan. Although he’s had a successful career, his priority has always been his family and his proudest accomplishment has been his children.

Even now, as life has things scattered a bit, Dan comes home and doesn’t miss a beat. Before he has a chance to take off his jacket, we all fight over “first hug” as Dan dives right into “How’d finals go?”, “Any news about Jack’s new class?”, “How many more days until Block Island?”.

Next time you see Dan, ask him about his kids. Listen to him talk about his beautiful Bananz (aka Anna), who rocks it as much on the field as in the classroom. Listen to him talk about Booger Brown (aka Jack) and his bravery and strength. Better yet, come to Clinton Avenue and listen to Dan talk to Anna about history and then listen to him sing loudly as he bathes his teenage son. You will walk away (in tears) knowing that Dan is truly an amazing father and we are one LUCKY family.

Love you Dan. And, special love being sent to Nonno and PopPop – our two other favorite Dads!!

Love, Jess

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FYI 10 more days until Block Island.

CHANGE is a four-letter word

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CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”

Yes.

It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.

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Love, Jess

Lucky 21!

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You are all thinking the same thing – How old were we? No lines on our faces or worries in our eyes. In such a hurry to settle down and get started as adults. We were looking forward to adventures and children and making a home. We’ve enjoyed all those things. Not exactly as we’d planned them, but have managed to enjoy them all the same.

21 years.

Not many couples can say they’ve made it 21 years, and even fewer can say that they’ve enjoyed MOST OF those days. Thank you Dan for all of your love and support and respect. I am still that lucky girl you see in the photo who is looking forward to adventures and children (not more, just the ones we’ve already made) and making a home (wherever our next chapter takes us). Just don’t put your glasses on, and I even look about the same.

Love, Jess