Tag Archives: children

Dan, the man

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Happy Father Day!

Here’s a truth. I fell off the “Perfect Parent Pedestal” years ago. Jack and Anna discovered early in their lives that I am human. They adore me and respect me (most of the time), but they are fully aware that I am full of faults.

Dan still lives high up on a pedestal. He walks into a room, and both of his children light up. Anna’s in awe of her father’s knack for languages and amazed each night watching him play Jeopardy. There is very little he doesn’t know. And Jack – to Jack, Dan is a superhero. He is the person who takes him on adventures and doesn’t complain when there is a necessary bathroom stop.

Sometimes I’m a little jealous of Dan, but here’s another truth – he has earned his role as a superhero. Most men would cower at the challenges our family has faced. Most men would focus all of their attention on their careers or a bottle. Not Dan. Although he’s had a successful career, his priority has always been his family and his proudest accomplishment has been his children.

Even now, as life has things scattered a bit, Dan comes home and doesn’t miss a beat. Before he has a chance to take off his jacket, we all fight over “first hug” as Dan dives right into “How’d finals go?”, “Any news about Jack’s new class?”, “How many more days until Block Island?”.

Next time you see Dan, ask him about his kids. Listen to him talk about his beautiful Bananz (aka Anna), who rocks it as much on the field as in the classroom. Listen to him talk about Booger Brown (aka Jack) and his bravery and strength. Better yet, come to Clinton Avenue and listen to Dan talk to Anna about history and then listen to him sing loudly as he bathes his teenage son. You will walk away (in tears) knowing that Dan is truly an amazing father and we are one LUCKY family.

Love you Dan. And, special love being sent to Nonno and PopPop – our two other favorite Dads!!

Love, Jess

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FYI 10 more days until Block Island.

Lucky 21!

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You are all thinking the same thing – How old were we? No lines on our faces or worries in our eyes. In such a hurry to settle down and get started as adults. We were looking forward to adventures and children and making a home. We’ve enjoyed all those things. Not exactly as we’d planned them, but have managed to enjoy them all the same.

21 years.

Not many couples can say they’ve made it 21 years, and even fewer can say that they’ve enjoyed MOST OF those days. Thank you Dan for all of your love and support and respect. I am still that lucky girl you see in the photo who is looking forward to adventures and children (not more, just the ones we’ve already made) and making a home (wherever our next chapter takes us). Just don’t put your glasses on, and I even look about the same.

Love, Jess

It’s a bird. It’s a plane. It’s Jack!

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Poor Jack. His life is so limited.

It’s such a shame he needs to go to school every day. He probably just sits there, staring at the clock, hoping for time to pass quickly.

OR, He gets to fly across a stage!

 

 

Jack’s school mom, Monica, sends us pictures and videos almost every day of his school adventures. Yesterday’s was particularly amazing. Jack just might be the luckiest kid on the planet!

No need to feel sorry for our boy;)

Love, Jess

Poop, shower and shave

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Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

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Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

I’m a mom

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Senior year of high school all the students in my class took a “Career Aptitude Test”. It’s goal was to provide you with ideas for careers that you would be well suited for. I don’t remember the particulars, but there was a long list of personality questions, and I definitely remember cringing when I saw that I needed to include my GPA. I went from being excited about the process, to feeling less than hopeful about the results.

A few weeks after completing the test, we were handed large manila envelopes in homeroom. Although we were encouraged to wait until we got home, without hesitation everyone ripped open their envelopes; eager to discover their futures. I was an outgoing girl as a teenager, but in school I did my best to get lost in the clutter of high school. There was no need to draw attention to my less-than-stellar academic achievements. This was definitely one of those moments.

“Lawyer!”

“Teacher!”

“Chemist!”

People started popping out of their seats as they read their results. I sat quietly for as long as I could, but finally opened the envelope to reveal what the random algorithm had chosen for me. I held my breath as I pulled out the white sheet of paper. There was a list of several suitable options, but the one that seemed to leap off the page was “Cake Decorator”.

 

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Today this quirky career would have been thrilling, but 1987 was a time before reality television highlighted obscure careers. There was no Cake Boss or Top Chef. I had never known a single person in the food industry, let alone someone who decorated cakes for a living. I sat frozen as I pictured myself alone in a back room of a bakery icing cakes.

Instead of sharing that result with my peers, I focused on something else on the list. Something that didn’t include icing. Then, I went home wondering what on earth my life was going to look like. Until that moment, I hadn’t focused too much on what I wanted to be. The only thing that seemed certain was that I wanted to be a mother.

I’d always known I wanted to be a mother. Not just having a few kids within my otherwise filled life, but being the kind of mother who stays at home, making PB & Js and helping the PTA. An old fashioned dream for modern times, but for me it was my greatest ambition. I’ve never judged women with big careers and busy lives (my own mother raised my brother’s and me while juggling jobs, being a corporate wife, getting her PHD and baking her own bread), I just didn’t really want all that for myself.

But 1987 was a time when girls where encouraged to “dream big” and the glass ceiling were getting higher. It would have been as hard to share this 1950s dream, as it would have been to share the idea of being a Cake Decorator. So for years, I sat silent when the the “What do you want to do when you grow up?” question was asked.

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Of course life winds around, and I’ve had a long list of jobs. I’ve been a wife (not that it’s really a job Dan), a teacher, a photographer, a writer (you don’t need to be paid right?). I’ve had my share of successes away from home, but when I look at my life, my proudest achievements have been as a mom. I’m grateful that Dan and I set up our family so that I could focus on my 1950s dream. It’s allowed me to devote all of my attention on my family when it’s been required — and it has been required a great deal.

Now, when people ask me what I do, I always start with, “I’m a mom.” I say it proudly.

Although I haven’t always been the perfect mother, I think that my successes safely outweigh my failures. If I can take even a tiny part of the responsibility for who my children are, I know that I’ve done a good job. Two kids with entirely different lives, and both are happy and succeeding (in their own way) as young humans. People that I don’t just love, but who I enjoy being around – most of the time. I’m still not quite sure what I want to be when I grow up, but so far MOM has been my favorite title.

Love, Jack and Anna’s mom

 

I never did find a job in a bakery, but I have decorated a lot of cakes in my time – just most have been of the “birthday” variety. And, I have come to know a few VERY talented cake decorators and often regret not taking that path. After all, I could have been a cake decorator AND a mom.

Here are some reasons to vote . . .

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Aidan Jack Seeger

I have a favor to ask of all of you who read this blog. VOTE YES!!

Aidan’s Law will require ALD screening in all fifty states. Many of you won’t need persuading to stop what you are doing and sign this petition, but some of you may pause and wonder if, in a world full of issues, we should be focusing too much attention and money on a rare disease. This post is for YOU. I have five reasons you should consider signing.

1. NUMBERS

As far as rare diseases, ALD is not so rare.

The current guess is that ALD effects 1 in 17,000 people. I say “guess”, because as our country does more testing, we are finding that many people have been mis-diagnosed with other diseases. ALD is a disease that winds it’s way through families and often does a good job at hiding for a generation or two and masking itself with a variety of symptoms/timelines/etc.

2. SURVIVAL

Aidan Seeger’s story is all too common with ALD. Without the luxury of an early diagnosis, the disease is allowed to devastate the body, stealing one thing after another as a family struggles to figure out what’s happening. Once a proper diagnosis is made, the options are limited and often prove to be too late for an already worn out body.

When Jack was first diagnosed, we found a half-dozen other families who were going through the processes of stem cell transplant (still the most popular treatment option). Jack is the only one of those boys who is still alive.

3. QUALITY OF LIFE

Jack is fortunate to have been diagnosed with just enough time to receive treatment and with just enough luck and energy to survive. Unfortunately, ALD did managed to steal much of his quality of life. While he is happy and doing well, he is fully dependent. We feed him, hydrate him (through a tube in his belly), medicate him, dress him, toilet him. He needs someone to walk him from the den to the kitchen. And, Jack is doing far better than some of his ALD peers. Most of these boys are in wheel chairs and many have significant hearing and vision loss.

4. MONEY

Many people are hesitant to stand behind and pour money towards an unknown disease. It’s important to understand just how expensive it is for our society to raise boys who survive after a late diagnosis.

Jack’s education costs almost $100,000 a year. He requires (and receives) physical therapy, occupational therapy and speech therapy several times a week. He has an aide who’s job it is to work solely with him, because he is not able to maneuver through his day at his special needs school.

Jack is turning 18 in a few months. An eighteenth birthday is usually celebrated with a party and the honor of voting, being able to serve in our military and applying for college. For Jack, his birthday comes with Dan and I applying for guardianship and Jack becoming eligible for both Social Security and Medicaid.

Jack is a very sweet and VERY EXPENSIVE member of our society.

5. IN CASE YOU NEED MORE

It would have been heartbreaking to learn when Jack was just a baby that a gene was lurking in his body that would likely someday need complicated treatment. It would have been difficult to find the proper doctors to monitor his development as he went through childhood. It would have been devastating to get the news that ALD had started it’s war on Jack’s brain and that we needed to drop everything and proceed with treatment.

BUT this would have happened with enough time that right now Jack would be approaching his eighteenth birthday with a healthy body and a future full of opportunities. If only Aidan’s Law had been passed 18 years ago.

There are 402 more signatures needed on this petition. Let’s help get this wrapped up today. Thank you to the Seeger family for devoting their lives to this cause.

AIDAN’S LAW – VOTE NOW!

Love, Jess

 

Anna just keeps pedaling

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When Anna was five years old, she came home from her friend Zoe’s house and told me that I needed to take the training wheels off her bicycle, “Today Mommy. You need to take them off today.”

Even as a little girl, Anna would get a look in her big blue eyes and I would know that she meant business, but I was curious about the timing, “Why Anna? Can’t we wait a bit longer? Don’t you like the safety of the extra wheels?”

“Moooommmm. I’m five. Besides, Zoe showed me today that she can ride her bike ALL BY HERSELF!”

That was it. There was no way that my daughter was going to let someone else enjoy even a second of glory without jumping into the game. That’s Anna. She was born determined to prove that she could do anything. It’s who she is to the core. And, it’s never been just to show off. She never really even required a witness. She just needs to prove it to herself.

That afternoon, I dug Anna’s bike out of the garage and took off the training wheels. We strapped on her Dora the Explora helmet and off she went. She started on our front lawn, “This is what Zoe said worked for her.”

There were a few spills on the soft grass before she got the hang of it. Within a half hour she progressed to the sidewalk and she’s been pedaling ever since.

Anna is now in high school, and her determination seems more indestructible than ever. It’s not just in the classroom and on the lacrosse field that she has a need to succeed. She seems equally determined to master everything from a Rubix Cube to memorizing presidents, country capitals and the Periodic Table. To date, she has yet to find something that she cannot master, but Dan and I can’t help but worry.

When is too much — too much?

I was never much of a shining star as a girl. One benefit of being mediocre is that no one expects too much from you. In fact, you get all sorts of encouragement and support and plenty of “clap outs” for every small accomplishment (I do love this). Dan, like Anna, was born determined, and it certainly reflected positively on his school work and career, but it has caused some disappointments and significant stress along the way. And, he did not have the added pressure that we fear Anna carries.

Anna is our only child who gets grades and plays sports. She is our only child who will go to college and have a career. She is our only child who will fall in love and have a family.* Dan and I try our best to alleviate the pressure and not focus too much on “being the best”, but it’s there. It’s been part of who Anna is since she was a little girl. As much as she does it for herself, Anna also loves to see her parents applauding her accomplishments. She knows we have our plates full with Jack, and is determined to make parenting her as easy as possible. This silent pressure must be stressful, but I’m not sure what to do about it.

How do we proceed? Do we stop posting her report cards on the fridge or cheering loudly at her lacrosse games? Do we discourage her from signing up for another AP class or stop her from all of her extracurricular activities?

We have tried praising more of her behavior and less of her accomplishments. We also try to remind her that she is not a grade on a paper or goal on a field. She is Anna, our daughter, Jack’s sister, a wonderful friend and beautiful human.

Special needs siblings are taught early that life is not fair and that their needs aren’t always the priority. They learn that their parents can’t take too much extra nonsense without potentially cracking. I’ve seen it again and again — special needs siblings grow up early, carrying more than their share. So far, this extra weight has added to Anna’s muscles, I just hope it doesn’t some day weigh her down.

For now, Dan and I just keep reminding her, to take it easy. “Work hard, try your best, but remember you’re just a kid.”

We keep talking and talking, but no matter what we say, I’m not sure we will change anything in our girl. Anna is Anna. She just smiles at us and keeps on pedaling.

Love, Jess

 

* In fact, Jack falls in love often and has plenty of girlfriends to prove it. I’m not sure how realistic it is that Jack will have a family of his own, but stranger things have happened – just turn on CNN.

Is there even a word in spanish for FUNK?

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images-6How can my mood NOT improve?

My mood lately has been inconsistent. One minute I’m smiling through my day and then something will hit me – hard. It’s not that I’m buried in a full blown depression (buried in piles of laundry maybe), it’s just that I’ve been in a bit of a funk.

Once I was able to acknowledge the funk, I started working out ways to make life a little less complicated. I’m trying to avoid situations that might trigger my sour moods, I’m trying to make better choices (less wine, more kale – some days I’m better than others), and I am allowing myself to let go of some of the less-than-glamorous aspects of my life. Being a good parent doesn’t need to mean changing every diaper.

Dan and I have made time alone together a priority ever since life changed. We are determined that we will stay in the 10-20% , and being able to focus on each other for a few days (especially out of our element) helps. We are blessed that we have the means to travel and generous people who are willing to help, but I recommend that all couples try it, no matter your circumstances – even just a trip to the local Holiday Inn can allow you to reconnect;)

So, with the goal of reconnecting and to help me feel less overwhelmed about life, Dan and I planned a trip to Tulum, Mexico. We are celebrating 20 years of marriage (it was in June – it took us a while to pull the trigger). We had fun picking the perfect spot and my parents quickly offered to help out with the kids. Then, it was time to sit down and start planning being away for five days.

Ironic that a trip planned to help us relax, further proves how complicated our lives are.

My parents are very capable people. Not only did they successfully raised three children, but my mother is a PHD and has worked with The Red Cross for more years than I can count and my father is brilliant and has such a connection with Jack, that Jack starts laughing as soon as my father enters the door. It should be easy to just hand over the house keys, and let my parents dive in.

Only it’s not.

Although my folks have helped us out before, it’s been a while and the kids are at a different stage. They are teenagers. Jack is complicated and 17. It’s not just the medication and the diapers. Bathing and changing him can be a challenge – he’s strong and about as helpful as a stubborn cat. Anna is a sophomore in high school, with a busy schedule and an active social life social life. And, we have two dogs  – one goes by the name “Bad Dog”. Nothing is patricianly difficult, it’s just a lot of moving parts. Although we have our wonderful team of Jack helpers on board, it’s a lot to oversee.

I always leave a list with important information when we go out of town and this time, it’s managed to grow into a five page document. As soon as I think it’s done, I think of some other random detail about life at 26 Clinton Ave. I keep trying to walk away from it, but it keeps sucking me back.

We leave tomorrow (NOW TODAY!!) for Tulum, Mexico, which by all accounts is paradise. Five days alone with Dan on the beach is just what I need. And, as soon as our flight takes off, I’m sure I will relax, but until then I will continue to add to the never-ending list.

Thank you Nonno and Mymom for filling our shoes this week and sorry for the long list of crazy. There are really only three things that you need to remember – Jack needs his medication, Anna curfew is 11:00 and NOOOO people food for the dogs;)

Adios Amigos!!

 

 

 

First Twitter, now this

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It’s adorable. I keep finding my almost 50-year-old husband sitting at the computer yelling, “You’re not gonna believe who I just found!”

Dan has taken up social media. Perhaps it’s his version of a mid-life crisis. I’m not complaining — It’s way cheaper than a new car and much nicer (for me) than a young girlfriend. It started with Twitter a couple of months ago. He swears that it’s just for “real time news”, but he seems much more in the know about celebrity gossip these days. Then, over the weekend he asked me to help set him up on “The Facebook”.

I thought he was kidding. Dan’s not just been one of those people who didn’t care about “The Facebook”, he resented it. Dan’s old school. A vinyl guy who thinks that the written word (on paper, in ink) is somehow superior. He’s still offended by losing the extra space after a period and HATES that his daughter doesn’t use punctuation to complete a text message.

But, I was curious enough to see what Dan was planning, that I set up a page and showed him the basics. He dove right in. Within a couple of minutes, I could hear him from the other room – giddy as he found old friends. The sweetest thing I’ve ever heard. He poured through his friend’s pages searching for familiar names. He went from, “I’m just looking for some particular people.” to “Did you know how many people are on this thing?”

Downloading old pictures is where he is now. He started with a few family photos, but then he stumbled on some old albums. Now he’s reliving his youth, one photo at a time. Wilton days, Block Island shenanigans and college. Many of the images are not oriented properly and I did tell him that maybe he should make some albums so that he avoided taking up news feeds. “But WHO wouldn’t want to see this stuff?”

I felt like his mom yesterday when I sat down at the computer and found that his Facebook page was opened. It was like that day when I accidentally found that Anna left her iPhone at home (It’s not snooping, just checking). I looked at all the old photos – so many great memories, but there were a few pictures that made me pause. I gave Dan a call and suggested that some of the images might be a little inappropriate for a broad audience, “Dan, if you wouldn’t want Jack and Anna to see it, it’s shouldn’t be on Facebook.”

I’ve used a similar line with Anna, “If you wouldn’t want your grandparents to see it . . . “. It hasn’t always worked with Anna and I wasn’t convinced it worked for Dan, so I found myself doing a little “editing”.

When Dan got home yesterday he told me that he heard what I was saying and that there were a few pictures we was going to take down. I quickly confessed that I had already taken care of it and promised not to do it again, “Unless you start making bad choices.”

WHEN did I become this wife? If I’m not careful, he’s gonna unfriend me.

 

Love, Jess

Time and a little innocence

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I was talking to a mom yesterday who’s struggling to find peace with a difficult diagnosis. She asked how I stayed so positive. I hear this sometimes and I wonder if I shouldn’t post a youtube video of my less-that-positive moments. I have them — trust me.

While I’m not always the picture of positivity, most days I am optimistic. After all, we’re lucky for a bunch of reasons. For one, we have a son who never complains. Not just because he can’t speak, but because he is the happiest person on the planet. We are also blessed with a daughter who never spends a moment questioning her family’s situation (she does question some of my decisions, but nothing having to do with Jack). Our “special” family also had one advantage that not all “special” families are given — time.

When we started our new life we didn’t know we were starting a new life. Our family assumed that we were living a dark chapter and that we would one day return to normal. We got it wrong and I am grateful for our innocence.

Eight years ago I don’t think we were prepared to accept a world that looks like ours or understand that our family could thrive under our complicated circumstances. Instead, we grew into our new life little by little and it’s worked out well. As the mom, I needed every minute of the eight years I was given to process this new reality. It’s far easier when information trickles in, than when you’re hit by an avalanche.

Jack was diagnosed with ALD before social media. Yes, there was the internet to track down information about rare diseases, but there were not online communities to join. I know, because I tried. I did find a few other families who were battling ALD and we grew close, but now newly diagnosed families can find their peers by simply typing “ALD” into their Facebook search. Within seconds, they’re connected to dozens of families willing to share their experiences.

It’s wonderful for people to know that they are not alone and to acquire information, but I worry that a heap of details about a disease like ours might be overwhelming and discouraging. I’m not sure how I would have reacted if someone had described what our future would look like when I was still processing the diagnosis and treatment.

I’ve shared our family’s journey publicly for years, and many ALD families have reached out. I hear the silence on the other end of the phone (or the keyboard) following a quick description about how “GREAT Jack is doing.” The word “GREAT” is following words like transplants, diapers, g-tubes, seizures, non-verbal, etc. I try to rewind and point out all the things that Jack is still able to do, “Jack can still see, hear, walk, laugh.” The silence continues.

Eight years ago, if some mother tried to tell me that her son was doing “GREAT” because he could still see, hear and walk, I would have slapped her.

As I tried to reassure the young mother yesterday, my heart went out to her. This world full of information is a mixed blessing. While I was impressed with her determination and knowledge of her child’s disease, she was getting buried in facts and statistics and details.

I kept trying to find the right words to make her feel better. I told her to stay strong, find a team of experts, pray if she is lucky enough to have faith, and breathe.

Knowledge is power, but sometimes I think that a little innocence is not such a bad thing.

 

Love, Jess

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