OURMatch.com

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I’ve been hanging out with an old friend who is returning to the dating scene. It’s a whole different world since Dan and I went off the market. Now there are pictures and profiles and lots of time on the computer. You need to really think about how you present yourself and what you share. All while being super cautious when pouring through prospective daters profiles – things aren’t always exactly as they appear. I’ve had friends share hysterical stories about first dates that quickly revealed ridiculous exaggerations about everything from jobs to height to age to mental stability.  Times are certainly different in the world of dating, but the basics still remain — before you start looking for a partner, you should know what you are looking for AND there always needs to be some chemistry;)

We are knee deep in our “find the perfect adult program for Jack” project. As Jack and I were on our way to our latest tour, I was talking to him about what I’d read online about the program and how bright and clean the facility looked in the photos, “But who knows JackO. We won’t really know until we get there”. As I was chatting with my boy, it occurred to me that the process is similar to modern dating – we’re looking for the perfect match and starting the search online. 

Like dating, our first step has been to figure out what we’re looking for. What do you look for in a partner?

Jack and I have always been drawn to a similar type of person. Cute, smart and funny. Pluses include a love for music and adventure. Negatives include people who don’t appreciate good food, strong hugs, and a good lick once in a while AND liberal political beliefs (okay – that last one might just be me). When we sat down to think about what we’re looking for in a perfect adult program, I kept thinking about this list.

Cute translates to a clean and comfortable facility. Smart means that the program balances time in the facility with programs out in the community, Smart also includes incorporating creative activities with life skills and providing 1 to 1 support as needed. And, funny – the most important – is that the program has the energy that Jack has become accustomed to. We love Horizon High School so much, but it has set us up for a tough comparison.

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We really enjoyed the adult program we saw last week, but we didn’t have much in common and no sparks flew. So, we’re going to keep on looking for our next one and only. We’ve even been tossing out ideas for a new program to be established. It’s not going to be easy, but I keep reminding myself that, although we may need to kiss a lot of frogs along the way, we WILL fine our perfect match.

Love, Jess

the last FIRST day

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Not a traditional FIRST DAY photo, but it’s pure Jack

Today was Jack’s last FIRST DAY of school. In June he’ll be graduating CPNJ Horizon High School and starting life as an adult. An adult who is funny and sweet and handsome AND and adult with special needs. Twelve years in, and we’re finally comfortable with having a child with special needs, but still — we’re bracing ourselves as we approach this new chapter.

I know we will figure this out – that’s what we do – but as Jack got on the bus this morning, I couldn’t help but get struck with that feeling that we’re just ten months away from a new unknown. Trying to distract myself from the panic, I sat on the black iron bench that was once my grandmothers and looked at the last FIRST DAY photos of JackO. What a life this kid has led.

Not able to shake the feeling all day, I dug through our not-yet-unpacked boxes in the basement for hours until I found it. Jack’s first FIRST DAY picture — Morrow Memorial Preschool. Dan had arrived at the church’s Baker Street entrance at midnight on a cold, early spring night, wanting to be sure that Jack’s name would be at the top of the list (in fact, he was the 7th or 8th, but he made it in). It was the school that all our neighbors had promised was the best and we knew our boy deserved the best. When we walked Jack into the doors of the preschool the first day of class*, Jack was a little nervous, but he was so proud. 

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I know today as Jack walked through the doors of his beloved high school he wasn’t nervous one bit. Jack rules that school — his magical smile making up for his lack of words. I’m so proud of our boy, who’s life has changed in more ways that we could have ever imagined 18 years ago. I just want all of his first days to be wonderful.

We have ten months to figure out the best plan for our boy. We will make it happen — even if it means we need to camp out for a week to make sure his is top of the list.

Love, Jack’s mom

* Jack’s first day of school was September 11th and we will always be grateful that Dan took the later train into work that day. ALD aside, we are a very lucky family.

THIS is ALD #26 – Hutch

Chelette reached out to me to share her son’s story and I was so impressed with how determined she is as a mother. Many of us ALD moms have been forced to fight with doctors to find the correct diagnosis for our sons. In this family’s story, this mom wasn’t just fighting for her son, she was fighting for answers to other questions in her family’s history. Thank you Chelette for sharing Hutch’s ALD story.

 

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THIS is ALD #26 – Hutch

Our son Hutch was a perfect 9lb. baby. As a child he was kind, bright and athletic! Hutch was the kind of kid who never had to be told twice and never needed to be put in a time out or punished. So when he was nine-years-old and we started seeing changes in behavior and struggles in school, I got concerned. I started telling doctors that something was up, but everyone blamed adolescence.

Hutch had febrile seizures as a child that no one seemed concerned with.  He had a seizure when he was six (almost out of normal range for febrile seizures) so I spoke with a neurologist, but he was not concerned. Then Hutch had another seizure when he was nine, so I saw another neurologist. She actually told me he would never have another seizure and not to worry about anything. This was not believable to me. At every neurologist visit I would always share that my dad had a neurological disorder, but still no one listened to me. They all blamed adolescence. 

My father had some neurological issues that started around age 28. His gait changed and he started to drag his legs while walking. No one was ever able to give him a true diagnosis. They said he had spastic familiar paraparesis, which never felt right to me.  His skin was very dark and he was bald.  By the end of his life, he was wheelchair bound (he could walk, but it was too taxing on him). He died during an angiogram at age 51.

I became so concerned by the time Hutch was nine-years-old, that I took him to see a neuropsychologist, an audiologist, a few neurologists. No one seemed concerned. He had what seemed to be auditory processing disorder and he had attention issues but no hyperactivity so again doctors were not convinced there was anything significantly wrong. Every direction I turned, we could not find an answer. 

In November of 2015, 3 days before his 13th birthday, Hutch had a 90 minute seizure. Yep, that wasn’t a typo, he had a 90 minute seizure … I didn’t think we would see him again. Miraculously he survived and that seizure was an important piece to the puzzle. The hospital we were in didn’t have a pediatric neurologist so they consulted with a pediatric neurologist at Tulane. When we were being discharged, they told us the neurologist had ordered a metabolic evaluation. I knew at that moment we were finally going to get the answers we needed.

Two weeks later we sat in that neurologist office and he spoke those words that we were not prepared to hear. He said our son had Adrenoleukodystrophy, that he would more than likely die within 2 to 4 years, most of which would be in a minimally conscious state, unable to walk, talk, eat, etc.. (he actually used the word vegetative state but I hate that word because people are not vegetables). He said Hutch would most likely die during a seizure and there was nothing that we could do to help or stop the disease as he was too far progressed (spoiler alert, he was wrong about the last part!).

My husband was completely devastated. Oddly, I was still so grateful that Hutch had survived the seizure that finding out we had 2 to 4 more years with him still seemed like a gift. Within a week we were in a geneticist office, he asked what our plans were and we told him that we have been vetting hospitals just to find out more about the disease and what our lives would look like. He pointed us in the direction of the University of Minnesota. He told us they had treated more boys with ALD than anybody in the world. At this point we did not think Hutch was a candidate for transplant based on what the neurologist we met with had told us — thank God he was wrong. 

One thing led to another, and the first week of January 2016 we were consulting with an amazing team of doctors at University of Minnesota to see if our son would be a candidate for a bone marrow transplant. At the end of our time there, they told us that they felt like Hutch would be a candidate. They didn’t know if he’d be able to live an independent life as an adult but they felt like BMT would preserve his physical abilities. We were thrilled AND scared to death!  

Two months later, on March 16, 2016, we moved to Minneapolis for a BMT that took place on March 22.  We lived in the hospital for 40 days and then stayed in Minneapolis for the next 2 months. Hutch did exceptionally well through his transplant and we moved home at the very end on June. Then life got really difficult. 

Hutch‘s case is different than most boys with ALD — his disease started in the front of his brain and there is no damage to the back of his brain. This means he has all of his physical ability still intact, but the front of his brain is profoundly damaged, so he can often look like a traumatic brain injury patient — he is impulsive, often inappropriate, and has no filter.

Anger and rage took over his body once we got home from Minneapolis.  Our girls, who were 15 & 10, had to move out of the house for a while because he was so out of control. Thankfully, better management of his dosing schedule of hydrocortisone, some amazing vitamins and blood pressure medicine worked and little by little we got our life back. 

It took about two years following transplant for us to see a little light at the end of the tunnel, but now Hutch is in school and and loving life. He swam on his high school’s swim team and played golf for his school team also! He needs many accommodations, but he is smarter than he appears on paper. 

We are very grateful for Hutch’s diagnosis, because as hard as it is, it saved his life and it explained all of the issues he was having. With Hutch’s diagnosis we determined that my dad had AMN (adult onset version of ALD) and more than likely died during an angiogram due to undiagnosed adrenal insufficiency.

Our lives are very different than we ever imagined, but also better than we expected following transplant. Because of Hutch is a poor decision maker and struggles to self-regulate, he needs constant supervision. But, he is here and has taught us a lot about life and the dignity of life. ALD took a lot away from us but it also gave us more than we could have ever imagined. 

— Chelette

 

 

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

Roll the Footage!

“Good morning”, Jack said with a big smile on his face as I walked into his room at 7:00 am. If you don’t know Jack, you might not have heard the words, but Jack speaks pretty loudly if you know … Continue reading

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. 

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!!

A Change of Address

Shhhhhh. Don’t tell my parents, but Dan and I lived together before we got married (even before we got engaged). 

We didn’t mean to live in sin. Dan was in-between apartments and my roommate was understanding. We lived in a large rent controlled apartment on the Upper East Side of Manhattan with two bedrooms, 2 bathrooms and a little room off the kitchen that we started calling, “Dan’s room”. It went on for months, but once Dan and I got engaged we decided it was time to make it official. We moved to Brooklyn before Brooklyn was more expensive than Manhattan. Before it was littered with kombucha bars and hipsters. Before it was too cool for us. We found a studio apartment in the parlor of an old brownstone. 132 Joralemon Street was one big room with high ceilings and a steep staircase that lead to a platform where we slept – except in the summer when it was unbearable and we had to move to the couches in the living-room.

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Our next apartment was more practical. 54 Orange Street, just north of Joralemon, was built to be an apartment building. It had a real bedroom and even had an elevator to get us to our second floor apartment. We lived there for two years until we found out that we were expecting. 

We were tempted to try being young parents in the City, but as the months went by, we became eager to find a house with a yard. That’s when we found Maplewood and the rest is history. First our beautiful 100 Jefferson Avenue and then it’s big sister, 26 Clinton Avenue.

We’ve been living together for 25 years and we’ve had our share of hard times, but each of our homes have always managed to hold us up.

Over the last couple of years, it’s become more and more apparent that this house no longer makes sense for our family. Many of our friends have come to the same conclusion about their family homes, but for different reasons. No longer in the “raising kids stage”, they’re downsizing or moving to get more land or their dream beach houses. Our nest will never be empty (in fact, we may need live-in support as our strength shrinks and Jack’s muscles grow). And, our nest needs to be accommodating for complicated living.               

It’s not that we’re in a situation where Jack is unsafe at 26 Clinton Avenue, it’s that we’re wanting to be proactive and want to find something easier — not just for Jack, but for us. Jack can walk up stairs, but needs assistance in both directions and sometimes just getting him out of the house and into the car is a challenge. 

Once we decided we needed a new house, we told our friend/hot-shot realtor our list of requirements:

*  One level for jack (the house could have more, but we wanted JackO to be able to access every bit of his home easily)

* Easy access to the home – loads of beautiful houses in the area fit the bill inside, but would be a challenge to get to from the driveway

* An attached garage

* Something we could move in without too much work – we don’t mind a project, but didn’t want to need to redo every inch of a new home

* Something cool to distract us from why we are leaving our beautiful home – either a quick walk to town or on the reservation or a stunning view or a pool 

Our realtor/friend was sweet, and shook her head politely, but I’m pretty sure that she thought she had just landed the most difficult clients of her career. Luckily, she’s determined and did her magic. She spread the word and our amazing community came together and found us our next forever home.

I swear that it was made for us. The opposite of our 109 year-old center-hall colonial, but in a good way. It’s 50 years old and open and easy. Two bedrooms downstairs and plenty of room for Anna and guests upstairs, completely remodeled, an attached garage, a driveway that goes right up to the front door  — AND it has a pool. I didn’t know I was a pool person until I looked at the back yard where I could almost see it filled with friends and family.

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Realizing we needed a different home initially made me angry. WHEN IS ALD GOING TO BE DONE STEALING THINGS FROM OUR FAMILY?!?! Now that we’ve found this house, I am feeling more excited about our next chapter. ALD isn’t in charge of this decision – WE ARE and it’s going to be great.

From Manhattan to Brooklyn to Maplewood to South Orange. May 1 is the big day – time to start packing!

Love, Jess