Trying to Make Sense

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Last month, I went to a wake where the room was filled with laughter and stories. It was a celebration for a great man who enjoyed 101 years of living (or a solid 97 – life got a little uncomfortable after that point). Our family was honored to have known this man well. He lived with his granddaughter and her family who are dear friends of ours. His death left us all feeling sad, but it made sense. It was time. The cycle of life.

Yesterday I attended another wake. One of Jack’s classmates passed away last week. A young man who’s life was filled with challenges, but every time I saw him he wore a bright smile. I hadn’t known this young man well, but he and Jack shared a classroom for the last couple of years and his passing left me lost — not knowing what to do other than to go to the wake and pay my respects to his family. I decided not to bring Jack. Jack knows what happened, but I couldn’t bare having him focus on the loss (there needs to be some advantages to having a challenging life). I made the drive to the wake trying not to think too much about where I was going and was at the wake for less then ten minutes — just enough time to pay my respects and run out of the building before my tears started flowing.

I sat in the car trying to catch my breath and make sense of it all. How can nature can be so cruel and why is life – especially for some – so fragile?

My heart aches for this child and for his family. My heart aches for everyone who knew and loved this child. My heart aches for our entire CPNJ family. My heart aches knowing it could be us.

I’ve been thinking about it all day and the one thing that’s making me feel a little better is thinking about all the people who filled that room yesterday. It was not the celebration that happens following a long life, but this young man clearly touched many lives in his short life. There were a lot of tears in that room, but there was also a lot of love. 

I still can’t really make sense of this untimely loss, but I’m trying. The reminder of just how fragile life can be could have me in a puddle, but instead I’m trying to think of it as a gift. A reminder not to waste time and to enjoy every second with people that I love.

Love, Jess

THIS is not Bravo

Why were a dozen people following us around with cameras and piles of questions for the last couple of days? We can tell just yet, but I can promise you that it will be more real than anything you’ve seen on Bravo.*

 

Love, Jess

* I love Bravo – every last bit of their version of reality – it’s just that THIS is not Bravo.

July 2019

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Yesterday afternoon Dan, Jack and I were cooling off in the pool when I realized it was the first quiet moment we’ve had all month. We were too tired for much conversation, but we all had smiles on our faces. Massachusetts, Block Island, Colorado, New Mexico, a party for Jack’s school friends to celebrate his 21st birthday, and more houseguests that I can count. We are all exhausted, but grateful for everyone in our lives who helped make all this fun happen.

For a family with more than our share of “complications”, we always seem to have a lot to celebrate. I’ll write more details about our summer adventures (and some exciting things coming up in August), but for now I will share some photos. Enjoy!!!

 

Love, Jess

PS Anna didn’t enjoy our quiet swim yesterday, because she had left for Block Island for a couple of weeks. When I grow up, I want to be Anna;)

 

NJ CAT

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If you’re not part of the Special Needs World you might think that the NJ CAT is some sort of cat-loving, youtube channel for New Jersey. It’s not. It’s something every special needs parent dreads. I completed it last week. The good news is —  I survived.

The NJ CAT is the assessment used by the Division of Developmental Disabilities (DDD) to determine an individual’s eligibility for services. With Jack’s 21st birthday looming and an adult program needed starting next June, we were required to get it done. CPNJ Horizon High School, always there to lend support, allowed me to complete it while sitting with their social worker and Jack’s speech therapist so that I could get through it without losing my mind.

It was still hard.

The test unravels as you take it. If you answer that your child has trouble with speaking, questions get more specific. Can they speak clear enough for a stranger to understand?, Can the speak clearly enough for you to understand?, Can they speak simple three-word sentences?, Can they say a word? When it came to eating: Can they cook and feed themselves without assistance?, Can they use simple kitchen appliances?, Can they use utensils safely?, Can they feed themselves independently? The questions go on and on. 50 pages worth of questions proving just how challenging Jack’s life is.

I was told to be honest. The DDD needs to know exactly what Jack’s needs are so that he receives the adequate funding for an adult program/therapy/etc. The questions didn’t allow for anything but honesty. If Jack was left alone, what could he do? Not much. I wanted to write that Jack’s smile says enough to know what he wants for lunch and that, although he can’t make himself a sandwich or use the toaster, he sits on his island stool and cheers me on with his eyes. I wanted to say that, although he can’t dress himself or brush his teeth or wash his hands or take himself to the bathroom or drink from a cup that he’s the most amazing human I know. 

While I took the test, I kept thinking that they were missing part of who Jack is. There were no questions about his ability to make people laugh or know when I need a hug.

For 12 years I have been Jack’s biggest cheerleader and being forced to answer the NJ CAT questions honestly was depressing. It only took an hour, but even four days on Block Island didn’t erase the dread about the new chapter that is beginning with the NJ CAT. Twelve years into this new life and we have always been so lucky with Jack’s day to day life. Thanks to the help of family and friends and Maria and Lilly and Monica (Jack’s other mothers) we’ve created a wonderful life at home and then the schools we’ve found have been extraordinary. First The PG Chambers School, where we arrived lost and scared and they taught us all how to accept this new life. And, CPNJ Horizon High School where Jack has thrived and they’ve taught our whole family how to embrace and celebrate every ounce of this life (or, MOST ounces – maybe not EVERY ounce).

Now we’re approaching the next chapter — having an adult child with special needs. No more schools with plays and proms and petting zoos. I’m sure we will find a good fit, but I wonder if any adult program can begin to replicate the warm environments that his schools provided.

Because of Jack’s late summer birthday, we get some extra time to prepare, but this time next year he’ll be heading off each day to something else. I’ve got to start hustling to find the perfect plan. I’m never great with change and I know this is going to be a tough one. We are lucky JackO always seems to make these adjustments with ease – and his magical smile.

I’ll keep you posted on what we see.

Love, Jess

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hApPy BiRtDaY bAnAnZ!

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Special siblings are a remarkable lot. Many people assume that these children grow up with something missing. Lack of attention and fear course through their veins, leaving them lost or even resentful and angry. I understand why people might make that assumption, but I’ve found that it couldn’t be further from the truth. The special siblings I’ve come to know are incredible people. Thoughtful, independent, hardworking, understanding, patient, and compassionate – just like Anna.

I did worry about Anna when Jack got sick. She was only six-years-old when our family’s attention was suddenly completely focused on Jack and his survival. We only had a few weeks to prepare for transplant following the diagnosis, and then Dan and I weren’t just not emotionally present for Anna, we were rarely physically there either.

Even after Jack got home from the hospital, the entire dynamic of our family had changed. We had been a family who was very focused on evenly dividing our attention, love and patience to our two kids — we never wanted to be accused of having favorites. After ALD screamed into our lives, the disease crumbled our “even-steven” approach to parenting.

We have always done our best to be there for Anna. We cheered loudly at lacrosse games (Dan was lovingly called “Loud Dan” for years), we tried never to miss parent conferences and would sit with her for hours over the dinner table discussing the trials and tribulations of childhood. She’s always known we adore her BUT she’s also always known we were just one diaper change or stomach flu away from dropping everything.

Jack’s illness/challenges trump everything (too bad that expression is so complicated now). If Jack needs to be medicated or changed, we need to take care of it and if he starts throwing up or looks like something is brewing, we don’t have the luxury of waiting. No matter if Anna needed help with her homework or we are knee deep in a project – ALD could interrupt our plans without any warning. We’ve all become accustomed to the interruptions  — especially Anna. It’s part of being a special sibling.

Anna learned early that if she needed to get something done, she needed to know how to do it herself – just in case. Don’t tell the MAPSO schools, but I didn’t sign any school paperwork once Anna hit middle school. Permission slips, notes from teachers – even those nightmare “Information Packets”. Anna took care of them herself. It was safer than putting it on my pile. It might have gotten lost in the medical bills/social security/gaurdianship paperwork. 

This early independence translated to a teenager who handled her college applications with minimal help and now that she’s in college, she doesn’t ask us for much help, other than making sure the bills are paid on time. Not that she doesn’t turn to us for guidance, but she knows how to handle things on her own. It’s how she has survived the ALD part of our family. It’s part of being a special sibling.

Independence has not been the only gift from being a special sibling.

I was getting my boobs squished yesterday (by a professional boob squisher — a mammogram) and I was trying to distract myself by making conversation. I asked if they had any fun plans for the weekend as they tightened the panel, “just one more little bit”. When she asked what my weekend plans were I mentioned that my daughter was coming back from college and we were celebrating her birthday. This, of corse led to where she was in school and what she was studying.

“Pre-Med at Hopkins? Are either you or your husband in medicine?”

I simply answered that her older brother is.

Anna was born strong and determined and Dan and I can take a little credit for who she has become, but Jack has been the biggest influence in her life. It was Jack who inspired Anna to study medicine. It was learning at only six-years-old that nature can be cruel. It was knowing that science saved her brother’s life. It was knowing that there is still so much unknown and she wants to be part of unraveling the mysteries of the human body.

Dan and I try to remind Anna that she’s only 19, and that there’s no need to know what she wants to do with her life, “I’m almost 50 and still trying to figure it out.” Anna’s a talented artist and I encourage her to continue making art. Dan and I both want her to study languages and travel and get the broadest education she possibly can. As much as we put in our two cents, but we know our sweet daughter and when she gets an idea, she can’t turn back. She sets a goal and she exceeds it. It’s who she is. BUT BANANZ IF YOU ARE READING THIS, PLEASE KNOW THAT YOU CAN MAKE CHANGES TO THE PLAN. ANY TIME.

Anna is driving up the NJ Turnpike from Baltimore as I am writing this. I can’t wait to get my hands on her and wish her a happy birthday in person. I can’t wait to watch as Jack jumps out of his chair to throw his arms around her until she screams for mercy. I also can’t wait to see where her life takes her. I wish Special Sibling didn’t need to be one of Anna’s titles, but it is and I appreciate some of the things that it’s taught her. With the combination of Jack’s inspiration to go into medicine and what Anna has learned as a result of being a special sibling, I have no doubt that she will do amazing things.

Happy Birthday Anna Banana – our very favorite special sibling.

Love, MoMo

THIS is (our) ALD

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After writing the sweet birthday story about Jack CLICK HERE IF YOU MISSED IT, I got started on our morning routine. Getting Jack up and out for school takes 2000 steps – even in the new house. There’s laundry and showering and teeth brushing and dressing and breakfast and medication. By the time we’re done with medication, we’re close to the finish line. The last steps are putting on his shoes (Jack wears AFOs so it takes some time) and few minutes on the potty – just in case.

I hadn’t realized that Jack had the last bite of cake in his mouth when I sat him down on the toilet (don’t judge – it’s his birthday). I left the room for a minute to grab some coffee and I heard a loud sneeze. When I walked back into the bathroom, there was chocolate cake EVERYWHERE. All over Jack, the floor, even the freshly painted, super cool and modern, white walls.

At first, there was a bunch of swearing on my part, but it quickly turned to laughter and joking with Jack that if someone hadn’t known what had happened, they might think it was poop. Several Clorox wipes and a new tee-shirt later, Jack and the bathroom were as good as new. I decided that – just in case – I would leave Jack on the toilet for just a few more minutes. The phone rang so I left the room and spent a couple of minutes chatting with Dan about the birthday boy. As I walked back into the bathroom I interrupted Dan by saying, “Holy crap. There’s sh%t everywhere!! Gotta go.”

This time there was poop everywhere. POOP EVERYWHERE!

When I cleaned up for the second round of mess, I can’t say that it was all laughter, but once I was finished, I called Dan back and we all found the humor when I said, “I just cleaned him up again. He still has some stuff on his pants. Not quite sure if it’s poop or cake. The bus just pulled up, so let’s assume that it’s cake.”

Is it poop or is it cake? Let’s assume it’s cake. THAT is real story of (our) ALD.

Love, Jess

side rails, alarms and a birthday

Yesterday I woke up to a tap on the arm. I was confused before I opened my eyes. Why was Dan back home – he’d left so early? Then I heard the hop hop as my human alarm walked away.

I wondered how long it would take for our boy to figure out how to climb out of his new bed. Just less than a month isn’t bad. We’ve been living this life for twelve years now and a month is remarkably quick for learning a new skill. Not that I’m assuming that Jack will manage this new trick again for a while, but I ordered some side rails for his bed, just in case. 

In our old house I worried about Jack climbing out of bed and falling down the stairs. Now I worry about Jack roaming around the house unattended and God forbid escaping and finding his way into the pool. Progress can be complicated at our house – wherever it is. I’m so proud when Jack accomplishes a new goal, but each improvement can come with a list of worries.

Dan and Anna think I am nuts, but along with the side rails, I’ve recently installed an alarm system so that I can hear every time a door opens, cameras in Jack’s room and at the front and the back of the house and an alarm for the pool. Having a child with special needs can be complicated and expensive, but piece of mind is priceless.

Twelve years ago I never imagined that our family would look like this today. I was living in the “everything is going to go right back to normal” mode. I never thought I would secure our house — not from outside threats, but from our boy and things as simple as climbing out of a bed.

THIS is ALD.

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Today is Jack’s 12th Transplant Birthday. 4383 days since those cells from the “Little Lady from Detroit” (in case you missed our story 12 years ago – Jack’s stem cells came from a cord donation. All we know about the donor was she was born in Detroit in 2005. She needed a name, so we gave her one) saved Jack’s life. So much has happened since them. Loads of good, plenty of bad – but mostly good. Although we never imagined living this life, we have a lot to celebrate today. This year we are planning on celebrating big for his 21st “typical” birthday, so we told Jack we are keeping things tame today. Don’t tell him, but we did get him a few gifts. Just trying to figure out how to wrap those side rails.

Love, Jess

PLEASE send Jack a birthday note AND consider making a small donation to CPNJ Horizon High School in his name. His Wheeln n Walkin Challenge is tomorrow and we are only half way to our goal . CLICK HERE. 

we’re home

Earlier this month I called one of my best friends and was hysterical. I’m not sure exactly what I said, but I remember hanging up the phone, walking though a pile of boxes and crawling into my bed. I saw her two days later and she told me that her husband had heard me melting through the receiver and said, “I’ve only heard Jess like that once before.”

Thirteen years ago we had just moved into a hospital, facing the biggest fight of our lives. I’m not saying that this move compares to that hell, but the overwhelming exhaustion is comparable. The physical work took it’s toll on this middle-age, non-athlete and the emotional component I found far more brutal than I’d prepared for. Sorting through memories and packing up boxes was just the beginning.

We chose to move because it was time – because Clinton Avenue didn’t make sense for our family anymore. Four stories of living was just too much for our boy. It was too much for me. Too many stairs, too much space between the master bedroom and Jack’s, too many walls to hide Jack from our vision. Our morning routine would have me up and down the steps countless times and during the bad weather it would often take me ten minutes to get Jack from our front door, down the stairs, through the path and onto the school bus. We knew we needed a change, but we couldn’t help but feel that ALD was stealing another thing from our family — our dream home.

When we started looking, we didn’t know if we’d find something that would fit our family AND compete with our beautiful, memory-filled Clinton Avenue. Even after we found this house that checked all our boxes, I would wake up during the night with my heart racing, thinking that we were making a huge mistake. Lack of sleep, physical exhaustion, packing up way too much stuff tucked away in every nook and cranny of a turn-of-the-century home — before the move actually happened, I was a basket case.

Then came the move. It ended up taking three days and once the moving truck left our driveway I went to take a shower and realized that it was my first shower in the new home (no, I hadn’t snuck one in anywhere else). The next morning one of the movers stopped by to follow-up. When he saw me clean with some mascara on, he said, “Wow. I didn’t recognize you.”

That was three weeks ago and finally Speir Drive is starting to feel like home. We’re getting used to the new routine and appreciating that it is easier. Right now I’m sitting on the sofa in the living room, with light pouring in from the skylights. Jack’s in his room just steps away watching That 70s Show (his new fav). The master bedroom is just beyond Jack’s room so when Dan and I wake up in the night, we can glance into his room without getting out of bed. The living space is all open, everything we need is on this level and when the bus arrives in the morning, we just open the door and there it is. No steps, no need for even an umbrella.

Banana has a beautiful room upstairs, where there are also a couple of guest rooms, and the house has a beautiful yard with a pool. It’s lovely – perfect for our family and perfect for entertaining. Dan doesn’t like it, but I’ve been describing the house as a mullet – all business in the front and a party in the back;)

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We loved Clinton. It was our dream house that we managed to make perfect year by year. It was filled with memories and I credit it’s walls for holding us together through some of the most difficult times of our lives. It was hard to say good-bye,  but I’m starting to feel like Speir Drive is going to feel like our dream home too before long. The boxes are almost empty and we’re heating up that pool so that we can start diving into making some new memories.

Happy Memorial Day!

Love, Jess

The Three P’s

Everyone knows that moving is a stressful experience. It’s the three P’s — Purging, Packing, and Paperwork. Is there anyone who really enjoys any of those activities, and all three at once is enough to send you over the edge!! … Continue reading

Happy BiRtHdAy!

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This handsome man is celebrating a birthday today. He’s not just handsome – he’s brilliant and creative and hysterical and a great father AND the sweetest Nonno on the planet. 

If you knew us during my high school/college years, you might be surprised by how close we are now. It took hard work (on both sides), but he and I are as close as can be – we share our highs and our lows AND always manage to find the humor in any situation.

I love you Nonno and am so glad we found our way!

Love, Tatess

Lesson of the day — Hard work pays off!!