Monthly Archives: June 2020

Banana is 20!

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Today is Anna’s 20th birthday. Like so many people, she isn’t celebrating it the way she had planned. Anna loves her birthday almost as much as I do, and she has been talking about her birthday plans since last June. Piles of her Hopkins crew would fill our house and then her childhood friends would join in and fill the yard and pool. Driving the neighbors crazy was really the only thing we worried about until COVID arrived. 

We modified the plan and then modified it again. Now we are hoping that the weather holds so that a few of her friends can come for some from a distance/Purell-filled fun in the pool. If that doesn’t work ,out at least she can celebrate with her three biggest fans – me, Dan and Jack.

The last four months have been filled with cancelled plans and profoundly adapting everything else. It wasn’t just her birthday, Anna’s entire summer has been altered. She was going to be waitressing here in town and then working in NYC with a doctor who works with children with neurological disorders (specifically Leukodystrophies). The waitressing job disappeared and then Anna got word that the hospital where she was doing her internship was only allowing “essential staff” on premises. Luckily the doctor was willing to adapt his plans and Anna is spending hours a day in her room working on a project that I don’t really understand, but she finds fascinating.

Anna has also found a job with the Department of Developmental Disabilities working with a handsome young man with special needs — Jack. She has hikes planned and has already been working on swimming lessons for our boy. Jack has had a lot of caregivers over the years, but I can say, without a doubt, that he has found his new favorite. And, for Anna, it is incredible to actually be getting paid for something she has always done without complaint. She adores spending time with her brother. She is a truly special — special sibling.

Anna is such a special young woman and I’ve always been proud of her heart and brain and determination, but COVID has shown me another quality she has that I appreciate. Anna is able to adapt. Our family tends to be “glass half full” people, but Anna seems to look at every glass as over-flowing.

Love you Banana and hope that you enjoy your quiet(ish) birthday!!! It may not be the birthday party of the year, but we promise that when the dust settles, we will P-A-R-T-Y!!

Love, Mom

PS As I have been writing this, I’ve been seeing friends sneak through the backyard gate. I need to go out there and start screaming, “Six Feet!!” and “Purell!!!”.

RIP Finn

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For years there have been five dogs roaming my in-law’s property on Block Island every Fourth of July weekend. For the last few summers, we’ve had a contest rating them and awarding The Most Rotten Dog. Finn won most years. He’d run away, he’d jumped on strangers, he’d eat garbage, he’d steal shoes, he’d eat food off platters, he was even known to bite a person or two. And, it wasn’t just while on vacation, even at home, Finn was never the perfect dog — but he was ours and we loved him.

Finn arrived into our lives 14 years ago, when we’d first moved into our house on Clinton Ave. The kids were 7 and 5 and Finn was our way of completing our perfect family. Within a year, Jack was unraveling and Finn didn’t get the attention a puppy should have. Puppy classes were traded in for doctor’s appointments and rules were replaced by yelling, “BAD DOG!”. 

Despite the changes in our house, and our less than exceptional puppy raising skills, Finn was always there for us. When we brought Jack home from the hospital following transplant, PopPop and Sue offered to take him up to Block Island, but we were determined to keep our family intact, so we kept Finn home and watched him like a hawk so that he won’t step on Jack’s IV lines or jump on his g-tube. Finn didn’t – he would just sit quietly by Jack — until the doorbell rang and then he would run like a  bullet and jump on whoever was arriving.

For the last 14 years Finn has been a huge part of our family and he has also been my personal shadow. He slept on my side of the bed and waited for me looking out the dinning room window when I’d leave the house. To avoid him scratching the door, I even learned to keep the bathroom door opened a crack so that he could find me.

Since Christmas, Finn has been suffering from seizures and “episodes”. He was losing his vision and hearing and could no longer enjoy his long walks and his usual routine of mischief. Last week, as a family, we decided it was time. His life was full of more bad days than good days, and at fourteen, his veterinarian didn’t see anything in his future but a quick decline. We wanted to do the best thing for our boy so we found a wonderful vet who could come to the house and ease Finn into his next life.

Our friends and family used to joke about life without Finn. How easy life would be without our trouble maker. Guests could come without being warned. The mailman had a chance at safely delivering mail. We could watch our nighttime shows without Finn constantly barking at the door to be let out – then in – then out – then in. But, when the veterinarian arrived yesterday, we were all in a puddle of tears. Finn had woken up with more energy than he’s had in weeks. He was not the mischievous pooch from his younger years, but he seemed fairly comfortable and happy. I kept thinking we should reschedule our appointment, but then kept remembering his last episode and how I’d promised him that we would do everything we could to have him avoid that pain.

We all sat in our living room, Finn on my lap and cried and gave our boy love as the doctor did her thing.

Dying with comfort and dignity is all that we could provide our four-legged friend after everything he provided for us for 14 years. We are going to miss you Finn and I promise I will always keep that bathroom door open — just a little — in your honor.

Love, Jess

We 

Jack’s Graduation

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First there was a pandemic that stole Jack’s last three months of high school. Then we were told that instead of a traditional graduation, there would be an “At Home” ceremony. Then it rained on the scheduled date. I was starting to think that nature was determined to completely ruin the end of senior year for our boy.

BUT the “At Home” graduation turned out to be an unbelievable day. 

Check out Jack getting his diploma!

Watching Jack as he excepted his diploma and Pillar High School’s Presidential Award was beautiful and then seeing his eyes widen every time he saw another friend arrived, warmed our hearts. After the ceremony, he wandered around the driveway reuniting with so many people he adores – IN PERSON. 

We did break some rules. 

Everyone wore masks and there was plenty of Purell, but there were more than 25 people on our driveway. And, there were hugs – LOTS of hugs. We couldn’t help it. It’s been three months since Jack has gotten to see these folks in the flesh and pulling him off of them seemed like torture, so we gave in (a little). 

After the celebration, we blew kisses to everyone as they drove away, and we put Jack directly into the pool — figuring the chlorine would kill off any germs. He sat on his favorite float as Anna swam him around. He had his hands claps behind his head and was all smiles, like he was reliving his fun day. Later in the afternoon we had another surprise when Peter arrived, bottle of champagne in hand, to toast to our boy’s latest accomplishment. What a perfect way to wrap up the day!

Jack’s life is complicated and there are many things he can’t do, but he has an exceptional ability to connect to people. Yesterday was proof that you don’t need to speak or write or be able to feed/bathe/toilet yourself to have a wonderful life full of people who smile every time you walk into a room (or onto the asphalt).

Thank you to everyone who made the day special and to Pillar High School for 7 unbelievable years of learning, growing and licking. I know that we are now not officially part of the Pillar Care Continuum, but I know in my heart, that our connection is not over just yet.

Love, Jess

ALD Connect Peer Mentor Program

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Thirteen years ago we were in the hospital living through transplant. We’d only heard the word Adrenoleukodystrophy for the first time four weeks earlier. We didn’t know anyone who had ALD or who had even heard of the disease. Our doctors didn’t even have much information to share.

We were terrified and we were completely isolated.

It took months to connect with any other ALD families — it was a time before social media and Googling ALD simply lead us to horrifying stories and even more horrifying statistics. Once we found a couple of other ALD families, we did find some comfort, but it was often short-lived as their journey’s took turns down dark paths. Fear and guilt weighed heavy in continuing those relationships.

It took years before our family really found our ALD community. Smiles and Duct Tape – the blog, then the book – found it’s way into the hands of a member of the board of ALD Connect and she reached out to encouraged me to go to their next meeting (thanks Kathleen). Attending a panel of ALD patients and caregivers and then my first ALD Connect Annual Meeting was empowering. It was years after Jack’s diagnosis and transplant and it was when I first realized that our family had reached another chapter in our ALD journey. Being surrounded by people who knew our disease – who lived our disease – was inspiring. And, we were no longer weighed down by fear and guilt and were finally strong enough to be able to provide help. Sharing our story with other families and doctors and organizations studying our disease — it’s (I hope) helped other people, but it’s absolutely helped our family find strength and take some power back.

ALD Connect asked me to attend a meeting last year to find out more about peer to peer support programs and how they can help rare diseases like ours. I was honored to be asked to represent ALD Connect and found the conference fascinating and reminded me of how our family felt thirteen years ago. Scared and alone.

The first speaker at the conference talked about the added stress of feeling isolated that families go through when facing a rare disease. They’re not just battling the disease, they are often battling the disease without any support from people who understand the disease the way ONLY PEOPLE WHO HAVE LIVED IT can understand.

ALD is a horrible disease, but the people effected are an incredible group. It took me a while, but most ALD families don’t take years to find the strength to help others. AND, thanks to social media, our community has been able to more easily find each other. Informally, many in our community have been acting as mentors, but ALD Connect is now rolling out a more formal program.

The ALD Connect Peer Mentor Program is now welcoming our ALD community to reach out if they would like to be paired with someone within our community who has experienced a similar path with the disease. A group of incredible mentors have been selected, representing each phenotype of our disease, and they are looking forward to being a resource for support, encouragement and a shoulder when needed. Please contact me or admin@aldconnect.org if you are interested.