The Back Nine

He's a Keeper

Patient support materials you may see in the future . . . I was told to say that. I prefer the caption “Love and laughter make 50 easy”

At 9:30 last night my brother, Pablo, sent me a text, “In 2.5 hours you will officially be in the back nine. Well played, Girl.” Then I received my first Facebook birthday wish from an ALD friend who lives in Australia.

I went to bed next to my husband of nearly 25 years and woke up to the sound of the two dogs marching around our bedroom (their nails make a click, click, click at day break) and Dan muttering, “F*cking dogs”. I fell back asleep for another hour until that same mouth that had cursed at the dogs gave me a gentle kiss on my forehead, “Happy Birthday Luvo”.

I poured myself out of bed around 7:00 am to start my morning routine —  a busy hour of bathing, brushing, dressing and laundry. Jack’s sweet smile let me know that he knew that today was a special day and peeing in the toilet was his version of a perfect birthday gift. By the time we were done with the first half of our routine and made our way into the kitchen, there was a birthday message from Anna, “Gotta run take an exam, but HAPPY BIRTHDAY MOMO! I’ll call as soon as I’m done”.

The rest of the day included a long walk, a beautiful lunch with two and a half of my best friends (one was on Facetime), teaching art to kindergarteners who think I’m turning “some sort of grandma age”, and I just ordered sushi for dinner with my boys (Anna will join us on Facetime). I also have enjoyed countless phone calls, emails, texts and silly Facebook birthday wishes.

I’m not entirely sure how I imagined myself at 50 when I was young, but it definitely didn’t look like this. I’m guessing I pictured a bit more maturity and certainly wouldn’t have guessed that I would be excited by my 21-year-old’s toileting skills, but here I am and honestly, I wouldn’t trade my life.

My family – both immediate and extended, my friends, our community, our dogs (even with their annoying morning clicks), our quirky new house, — I am beyond grateful for everything and everyone in my life as I start the back nine.

Thanks for all the birthday love. 

Love, Jess

If I had the power to change certain things, of corse I would. I wish we’d never heard of ALD and that Jack’s life had taken a different path. But I can’t, so I embrace what I have and what I have is amazing.

THIS is LEUKODYSTROPHY #24 — Ethan

For most people, Facebook is all about travel pictures, political comments and dog videos, but for me it’s largely about connecting with the ALD and other Leukodystrophy communities. Last weekend, I stumbled on a post from a mom that I wanted to share. Much of the focus on our diseases lately has about getting an early diagnosis and the newest treatment options. It’s important to remember that some of our families have been living with ALD and similar diseases for a long time. It’s not as thrilling as the new stories, but our boys are beautiful and important too.

LogoSample_ByTailorBrands-2

THIS is ALD (ish) #24 — Ethan

9 years ago, Ethan’s father and I were sitting in a neurologists office listening to a doctor tell us, “Your son was misdiagnosed with Cerebral Palsy. He actually has an unknown leukodystrophy – a very rare disease that is progressive”. 

I’ll never forget that day. The doctor had no bedside manner and told me not to Google the disease because awful things will happen to Ethan and then he will pass away. I left that appointment feeling helpless and hopeless. The doctor’s words played over and over again through my head as we drove home and I cried on the highway. I remember looking back at Ethan in his car seat all smiles and happy, not knowing he was very sick. 

For over a year, I let that doctor rule my thoughts “Ethan is dying  — the doctor basically said there is nothing we can do, “Don’t Google the disease”. I would have constant nightmares about Ethan’s funeral and wake up in a panic. I would check on him while he was sleeping to see if he was still breathing. 

A couple years later, we finally met Dr. Eichler (the director of the Leukodystrophy service at MassGeneral Hospital for Children) who has given us nothing but hope and a positive attitude. He genuinely loves Ethan and has never once said, “Awful things will happen to him.” Or, “He is going to die.”

What Dr. Eichler does tell us is, “Look how far he’s come” and, ”Yes this disease is progressive, but Ethan is a fighter”. Ever since meeting Dr. Eichler my outlook on Ethan’s disease has changed. When a doctor actually looks you in the eye, answers your questions, hugs your child, laughs with your child, checks in with you via text, email and phone calls, then you know you have the right doctor. 

Shame on the doctor who gave Ethan a death sentence and no hope! Guess what? I Googled his disease and ended up connecting with amazing families all over the world who share the same life we do. Connecting with other families has been a wonderful experience. Seeing all their pictures and how loved these boys are by their family and friends like Ethan, makes me so happy. And now Dr. Eichler introduced us to another amazing doctor, Dr. Rodan, who has helped give Ethan a better quality of life! I’m so happy these two doctors never gave up on Ethan and I’m so proud of my boy who continues to fight and has an incredible will to live. ❤️

A couple of days later, this mom wrote something else on Facebook that took my breath away . . .

Ethan ten years ago. Before wheelchairs, seizures, helmets, daily medications, and intrusive medical procedures. But some things haven’t changed: Ethan’s giggle, his funny jokes, his amazing personality, his hugs and kisses, his “I love you momma”, his ability to make any task fun, his will to defy the odds, his outlook on life, his ability to live in the moment. All the medical issues might be happening to Ethan, but he doesn’t let them define him or change him. Ethan is still Ethan, he’s my son, he’s my everything. Love you Super Mario boy!

— Jennifer

Thank you Jennifer for allowing me to share a little of Ethan’s story. Ethan is almost 13 now – such a handsome (almost) teenager!

23275534_1190027434430690_8470806296349185216_o

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

THIS is ALD #3 – Dalton

The response to THIS is ALD has been remarkable (If you missed post, check it out). I’ve spent much of the last week corresponding with people in the ALD community — hearing stories and sharing our own. It’s been emotional, but it does have me thinking that I’m onto something good.

I was working on a post about Goucher College and The Grateful Dead (including some marriage advice), but that’s going to have to wait. I have another ALD story about an amazing boy named Dalton.

THIS is ALD #3 — Dalton

I met Dalton’s mom, Jennifer Lindsey, in person this fall at an ALD symposium. I’d followed their ALD story since the beginning, and I was glad that I got to turn her from a stranger-friend to a friend. She is smart and loving and dedicated to the ALD community. As soon as I reached out to the ALD world asking for volunteers for THIS is ALD, she sent me a note. She agrees that the more people share, the brighter the ALD landscape will be.

Thank you Jennifer for your words.

        Dalton was a very laid back, easy going kid.  On a normal day, he wanted to wear jeans and a t-shirt.  In fact, if I ever had a polo or button-up shirt set out for him he automatically assumed it was picture day.  He kept his hair short, but did have a Mohawk a couple times, which he thought was awesome.  Dalton was a hot mess, but he was my mess.  One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever. 
        I always thought Dalton was destined to be a comedian.  He could always make you laugh, even if you didn’t want to.  Sometimes it was genuinely funny and other times it was just so downright stupid it was funny.  Even when he wasn’t trying to be funny at all, it just came naturally to him.  At times he didn’t know when to stop.  He just liked making people laugh so much that if it worked he would keep it up, which at times was just fine and other times could be so frustrating.  Like most kids, he didn’t have a filter, so there was no telling what was going to come out of his mouth.  Dalton was a very sweet, loving boy who was robbed of everything possible by this monster we call Adrenoleukodystrophy. 
        Dalton was diagnosed on July 13, 2016 with Adrenoleukodystrophy, a genetic metabolic disorder that attacks the myelin sheath of the neurons in the brain. It literally robs these boys of their vision, hearing, motor skills, mobility, speech, ability to swallow, and eventually leads to death. A bone marrow transplant can stop the progression of the disease if successful, but does not reverse the damage already done.
        He was a perfectly normal 10 year old boy before. We had no clue. The only reason we had an MRI was because he was having hearing issues in May, 2016. I was thinking it might either be a brain tumor or a processing disorder so we did the MRI to be on the safe side. Second worst day of our lives. At that point they sent us to Riley in Indy, who more or less gave us a death sentence. We were then several days later pointed in the direction of the University of Minnesota Masonic Children’s Hospital, where we spent almost 5 months.
     Dalton had his stem cell transplant on August 29, 2016 which went beautifully, but he contracted the Epstein Barr virus in October, had to undergo more chemotherapy, and then was diagnosed with acute grade 4 gut graft vs host disease around mid-November. They tried several treatments, which were unsuccessful, and he was sent home on his birthday, December 1. We were under home hospice care until December 13 when he passed. I believe with all of my heart that newborn screening and gene therapy would have saved Dalton’s life. 

 

Watching Jennifer’s Facebook feed over the last few weeks has been difficult. She has been reliving/reflecting/sharing (not sure of the right word, but it’s been both heartbreaking and beautiful). “See your memories” is a feature on Facebook that should be about fun memories of silly times over the years, but when you’ve lost someone, it can be upsetting. Jennifer’s Facebook page has been sharing the last few weeks of her son’s life as well as who he was before ALD crept into their lives. Dalton’s radiant smile before ALD is beautiful, and that is the boy that I chose to picture here. I love how Jennifer describes him, “One moment he could be the sweetest, most loving kid you ever met and then turn right around and be the most devilish, ornery kid ever.” Sounds like an awesome boy!

Unfortunately, Dalton’s story is not uncommon for ALD. Stem cell transplants have profound risks and if the disease has escalated passed a certain point, many boys lose skills quickly during the process. And, like in Dalton’s case, a transplant can leave a person vulnerable to infection, rejection of the new cells and Graft vs Host Disease (where the new cells – the graft, attack the body – the host).

As Jennifer says, Dalton’s story might have been different if they had had the luxury of newborn screening for ALD and had had access to gene therapy. Newborn screening allows families to prepare and monitor their child’s health so that treatment is provided in a timely fashion. Gene therapy does have risks, but Graft vs Host disease and rejection is avoided. It’s a game changer for ALD.

For more about Dalton and his journey, check out: In the Blink of an Eye: Dalton’s ALD Journey

Thank you Jennifer for sharing Dalton’s ALD journey.

Love, Jess

Please contact me at jctorrey@mac.com if you are interested in sharing your ALD story for THIS is ALD.

lucky mom

IMG_4341

Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

It’s a GIRL!

IMG_2322

My daughter/sister/bestie is 17 today!

Anna left at the crack of dawn for the DMV, and returned with a huge smile on her face and a driver’s license in her wallet. Once I was done jumping up and down with her in the driveway, I found myself in a puddle of tears. And, the tears aren’t stopping.

I’m hoping that some time here on the computer will help me sort out why I’m finding today so overwhelming. If I can just find the words, I might be able to make some sense out of all these emotions.

I’m excited for Anna. 17 is huge and getting your license is a great achievement. I know that some kids these days aren’t too interested in driving, but our girl has been obsessed with cars since we let her drive up the driveway on Block Island when she was twelve years old. She organized a driving instructor and even talked us into giving her Dan’s car over a year ago (he took the train today – anyone selling a car?). When our girl gets her mind set on something, she’s all in. And, Dan and I have also been looking forward to this milestone. Not needing to worry about getting Anna to and from school and lacrosse practice – AND having her help with errands is going to be wonderful.

So, what’s with all these tears? Here’s what I’ve up with:

1.) There is always the “Jack Factor”. That punch in the gut when there’s a bold reminder of something that Jack will never experience. That was further highlighted today when I realized that the rest of my day included stocking up on his diapers at Target, dealing with Medicaid, and setting up some doctor’s appointments. That punch never goes away.

2.) The phone call to our insurance company adding Anna to our plan. Even with the “good student discount”, the increase to our policy was startling. Probably not enough to make me cry, but it certainly made me pause.

3.) As much as I love having a daughter/sister/bestie I can’t believe I no longer have a little girl. Wasn’t she just born?

I won’t go into all the details of the day Anna arrived, but I will share that it wasn’t quite as beautiful as I had imagined the birth would be. I had begged my doctor to allow me to have a VBAC (vaginal birth after c-section). Jack had been breech and 10 pounds – a scheduled c-section. I’d felt cheated from having a typical “birth story”, and thought that this was a great idea. Unfortunately, it wasn’t as fun as I expected. I had signed up for a VBAC, not for a natural delivery, but by the time Anna arrived, any bit of pain medication was gone. GONE.

Needless to say, I was in agony. The only thing that kept me from continuing my four-letter-word rant, was when I heard the doctor say, “It’s a girl!”

I stopped screaming to ask, “Are you sure?”

Dan and I didn’t know the gender of either Jack or Anna before they arrived. We loved the idea of the “ultimate surprise”, but truthfully I wasn’t ever expecting to have a daughter. Dan’s sister, April, is the only girl of her generation on the Torrey side. And, Pop Pop (Dan’s father) is one of four boys. When Dan and I started our family, I really pictured myself as a mom of a couple of boys. “It’s a girl” was a complete surprise. We had no name prepared and nothing pink waiting for her arrival. I just stared at this little peanut as she was placed on my chest, wondering what it was going to be like to have a daughter.

It’s been amazing, but how did the time go so quickly? How is that little girl with no name or pink blankets driving a car to pick up her boyfriend and go out to lunch?

Okay – I got it. I’m hysterical because my job as Anna’s mom is reaching the end. Thank goodness MyMom is on her way for a visit. I need some love. Hey, wait a minute . . .

 

Love, Jess

Happy Birthday Banana! You can come home now. I’m done crying for now;)

 

 

 

I want to be like Harry’s mom

Twenty years ago (years before I was even pregnant with Jack), I was a middle school art teacher in a suburb on Long Island. One day, the principle asked me to come down to his office to discuss something. He told me that there was a boy in the district who was profoundly autistic. He wasn’t mainstreamed in any classes, but he really loved art. The principle asked if I would be willing to have the boy join my seventh grade class.

I didn’t know much about Autism, but I did know about tenure, so I nodded my head and said that I would love to.

The next day I was introduced to Harry. Harry could barely speak, couldn’t look me in the eye and had a host of very unusual behaviors. Initially, I thought HOW is this going to work? I was a new, inexperienced teacher and had 26 other seventh graders in the class – seventh graders!

I was surprised and delighted that over the next couple of weeks I didn’t just get used to Harry and his quirky behavior, I kinda fell in love with him. There was something magical about the way that he was able to tune out the chaos around him and focus on his work. And, the feelings where mutual — before long, part of Harry’s daily routine was to stop by my classroom several times a day to hug me. Long awkward AND awesome hugs.

As Back to School Night approached that year I was super excited about meeting Harry’s mom. I felt like I needed to tell this overwhelmed/exhausted women that she was doing a great job – that Harry was a great kid. I was going to make her day.

The night arrived, and as my seventh grade class of parents filed in, I scanned the room for Harry’s mom. I’m not sure what I was looking for but I was certain I didn’t see her. There was not one person in the crowd wearing a “I’m a special needs mom” hat. I was disappointed, but moved on with my “Why Art is the most important subject in your child’s curriculum” speech. When it was over and the class started to empty, a woman walked up to me and introduced herself, “Hi, I’m Harry’s mom”

I was floored. She’d been there the whole time and I hadn’t recognized her. She wasn’t at all what I expected – she was showered and had make-up on. She was even smiling. I paused a little too long and then made things worse by hugging her and telling her how much I adored her son and great I thought she was. That hug made Harry’s hugs seem pretty normal.

As she removed herself from my arms she said, “Thank you so much Mrs Torrey. THAT is great to hear, but I know how amazing Harry is. I’m not just a special needs mom – I’m Harry’s mom. Harry’s life might be a little more complicated than his peers, but I have always tried to not let Autism take over our family. I have other kids, I have a job and a husband and friends. If I let Autism define us, I am letting Autism win.”

I’m not much of a believer in “all things happen for a reason” but Harry’s mother’s words have stayed with me for over twenty years.

When Jack got sick and it started to become apparent that his disabilities weren’t temporary, I remembered that day meeting Harry’s mom and thinking that if I could just keep her attitude my family just might survive.

Love, Jess

dsc01242

 

What I realized while in Paris

dsc01125

Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

dsc01144

dsc01169

This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

dsc01177

“special” moms

images

 

What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.