Monthly Archives: February 2019

Do us a favor

Posted on by

0

IMG_4771

Two people who share one disease

 

Today is Rare Disease Day. Please take the opportunity to celebrate by sending off letters to help pass Aidan’s Law. It’s time for every newborn in the country to be tested for ALD. This life-saving test shouldn’t be available depending on your zip code.

I look forward to a day where ALD is not the disease that Jack faced 12 years ago.

This will take you less than 2 minutes and will save lives. 

https://actionnetwork.org/letters/letter-to-congress-to-pass-aidans-law

Love, Jess

 

 

on my last nerve

Posted on by

2

images-8

When the kids were little, I had a friend who always made me smile. She had a way of making even the toughest days seem manageable. She knew how to poke fun of herself, her mood and life as a young mom. “He/she/it is on my last nerve” was her favorite expression. As a young mom myself, I could relate to being over-worked and under-rested. I could relate to feeling like my nerves were exposed, ready to react to any little thing. 

“You’re on my last nerve” was all her kids or husband needed to hear to stop what they were doing and leave the room. When I would hear her say those words over the phone as we were bitching about life, I knew she was frustrated, but that she had a smile on her face.

I would like to apologize to anyone who has gotten in my way or said the wrong thing to me the last couple of weeks. I’m tired and stressed — I’m working on my last nerve. I know that once we find our next home, I’ll be fine. Our family is up for anything — we just need to know if we are buying or renting or pitching a tent somewhere. I need to stop focusing on saying good-bye to this beautiful house and start thinking about saying hello to our next adventure. Not knowing is killing me.

Good news is that we have found a wonderful option that really appears to have been made for our family. Nothing is finalized yet, but we’re feeling optimistic. Still, that last nerve is exposed until the paperwork is complete.

Last night as I was lying in bed, too tired to sleep (is that a thing or just something that my body has invented?), I swear I could hear my friend speaking in my ear. She passed away many years ago. Bravely fought cancer with more grace than most people fight a cold. She died before Jack got sick, but her memory managed to help to me during the darkest days and once again she’s helping me regain focus.

Stay strong Jess. You can deal with anything. You are just working on your last nerve.

Thank you girl.

Fingers crossed that part two of our move project will be over soon!! Then the real fun begins – packing. Crap!!!!!

Love, Jess

images-7

I Wanna Be Like Jack

Posted on by

4

IMG_4717

The daughter of one of my oldest/bestest friends reached out to me last week. She had an assignment to write a paper on a rare disease and chose ALD. Her thoughtful questions had me sharing details about Jack’s life. Questions about his diagnosis, experiences through transplant, returning to school and about what Jack’s life looks like now.

I always try to be honest when answering such questions. The idea that a high school student is spending the time to educate herself, and in turn, educated her teacher and her classmates, is valuable and I want to make sure the information I provide is accurate. And, after eleven years, I’ve shared the details enough that I’m usually able to write the words without focusing too much on the meaning behind them.

This week has been different. As I was writing, the words keep hitting me — but not in the way you might expect. As I was describing what Jack’s life looks like now, I kept thinking, I wanna be like Jack.

Let me explain.

I’m feeling rather overwhelmed. Putting our house on the market this month seemed like excellent timing. Our three story home is filled with rooms that we don’t use and Jack’s life would be far easier with fewer steps. Anna seemed excited about returning home from second semester to a new house, and I kept thinking it would be a wonderful distraction from my blues about Anna being away at school.

So we hired our dear friend/hotshot realtor, cleaned up our house and put it on the market. Within a week of listing, we were under contract (we were fortunate to have a lot of interest and ultimately sold to a beautiful young family from Brooklyn). So easy, but I guess I wasn’t really prepared for Part One of our moving project to be completed so quickly. I hadn’t thought too much about all the next steps – the inspections and lawyers and finding our next home. 

The other day, I took a break from digging up old paperwork and searching house listings to answer some questions about Jack’s life for my friend’s daughter. I looked over at Jack who was sitting on his favorite couch, his legs up on the ottoman and his dog by his side. He had a grin ear to ear. He doesn’t worry about home inspections or details like where we are moving in May. He just lives in the moment and knows that his team has everything covered. 

I could have felt sad as I wrote the long list of things that Jack can’t do, but all I could think about was how relaxed and happy he looked. Sometimes I wish I had a team that I could trust would take care of everything.

Sometimes, I just wanna be like Jack.

Love, Jess

Before you pick up the phone to send me a text trying to cheer me up — I’M OKAY — just a little stressed. I know that within the next few weeks, we will figure out our next move. It’s time to pass along our beautiful house to another family that will fill it with love and memories. And, it’s time for our family to start a new chapter. It’s going to be amazing  — and easy and flat.