Category Archives: family

Kids these days

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Here I go again. Another story about Anna.

I do sometimes worry that we are putting her on a pedestal so high that if she falls, it might really hurt. That she feels pressure to always be the best hoping to balance out our family’s circumstances. And, that some day she will decide that it’s not worth it and turn in her flawless GPA for . . . I don’t know, something bad.

But then I look at Anna and I know that, although she enjoys her parent’s praise (and the accolades from people who read this blog), she also really does like school and sports and giving back. And, that while she is wonderful, she’s still a teenager and has proven that to us in the last several months (maybe someday I will take a moment to list her less-than-perfect exploits so that people can feel better. Anna is human).

Anyway, I can’t NOT share what our daughter is doing these days. It’s just too great and very relevant to our “journey”.

Anna and her friends have taken over Boxes of Fun and are eager to take it to another level. I’ve loved the simple, homegrown family project, but I’m thrilled at Anna’s initiative and I’m okay with letting go of the reins.

Here’s a little back story on Boxes of Fun.

When Jack was first diagnosed, our friends swung into action. Dog walks, meals delivered, Anna entertained. At some point some friends even ripped out old carpeting and painted Jack’s room. It was incredible. And, as Jack prepared for his transplant, we started to hear rumblings about a magic box.

Jack’s Big Box of Fun was spearheaded by our dear friend, Kim Vivenzio. Kim was not just a “love aunt” to our kids and a “love sister” to me, she had a unique perspective to what our family was going through. Several years before, she received a stem cell transplant.

Her experience allowed her to help us on a profound level. She was able to explain the particulars of the treatments that Jack was going to face and strategies her family used to survive. She also shared some of the amazing things that she experienced during that time. One memory always brought a smile to her face — her friends and colleagues had made her an amazing box filled with goodies. Sharing how much it had meant to her, Kim got the idea to make a box for Jack.

Kim is not a woman who does things half way. She started to organize “Jack’s Big Box of Fun” with the help of a gaggle of friends. A huge box was decorated, filled with piles of presents from friends and family and delivered the day after we arrived to room 505 at Columbia Presbyterian Morgan Stanley’s Children’s Hospital.

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Jack’s Big Box of Fun was the centerpiece of room 505. Even days that Jack was too sick to play, our family had a wonderful distraction sitting at the foot of his bed.

As Jack recovered, our family was eager to give back. We wanted to help other families who were going through the hell of transplant. The Box of Fun had been such a light in our room that we decided we needed to share this light.

With the help of the Childlife team at the hospital, we started donating individual boxes to the kids on the transplant floor. It’s been a very homegrown way for our family to give back. Along the way, the community has helped out. Donations have been made by friends and family. We’ve received piles of gifts from children — donating to celebrate their birthdays or for the holidays. We’ve had local businesses donate. We’ve had friends as far away as Block Island, Pennsylvania and Massachusetts host toy drives.

Anna has grown up with Boxes of Fun and as the years have gone by, she’s become the primary decorator and gift selector (I’m apparently lame about what kids want). Last year, she and her friends organized some drives and this year they’ve made it into an official club at her high school.

They’ve been busy Tweeting, Instagraming, and Facebooking. Raising enough money and awareness that they’re hoping to expand Boxes of Fun to a few more hospitals by spring. I’m so proud of this crew of amazing teenagers.

This weekend they are bagging groceries at a local store — SHOP RITE IN SPRINGFIELD (please come by tomorrow). I spent the day watching as they bagged groceries, raised money and shared the history of Boxes of Fun. I am a very proud mama.

Kids these days – THEY’RE INCREDIBLE.

Love, Jess

PS Kim is celebrating her 20th transplant birthday next year. That’s gonna be a great party!!!

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Giving Tuesday!

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I’m guilty too. After laughing about how absurd it was to dash out from family — and dishes — to shop on Black Friday, I found myself sneaking on the computer first thing Monday to see what was on sale. Suddenly, I was in a frenzy. 50% off at JCrew, 25% off TVs at Best Buy! I forget everything I said, grabbed my credit card, and went nuts.

Giving Tuesday is the perfect opportunity to regroup and remember what the holiday season is really all about.

YES — this is the part where I talk you into pulling out your credit card and supporting something other than your family’s wardrobe or gaming systems or pot racks (Williams Sonoma also had a monster sale).

CPNJ Horizon High School has been a life saver for our family. Finding the right fit for Jack following our wonderful experience at The PG Chambers School was difficult. If you have a special needs child, you understand. If you don’t, I want you to take a moment and try to imagine.

School is always a source of concern for parents. We all want to feel that our child will be safe at school and have days filled with engaging experiences. When your child has limitations, you worry more. Dan and I needed to find a high school program that would support Jack’s needs while keeping his smile firmly intact. There are no schools for non-verbal boys with ALD and Epilepsy, who need help eating, toileting, and walking down the hall BUT who also what to have fun. We started our search with a huge list of requirements.

We wanted a school where Jack would receive physical therapy, occupational therapy and speech therapy during his school day. We wanted a school with an accessible playground, a therapy pool, an outdoor vegetable garden, art and music. We wanted Jack to be exposed to instruction in subjects like science and history. We wanted Jack to get to enjoy community trips, sports, plays and a prom.

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Prom 2015

 

We found all those things and more at CPNJ Horizon High School! Jack gets on the school bus every morning with a huge smile on his face and comes home seven hours later tired but happy.

Now it’s time to grab your credit card and make a donation. Let us know and you will receive a thank you note from Jack;-) AND we will inform elves from all faiths that you were extra good this year!

Love, Jess

 

46 ain’t so bad

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There is nothing sexy about being 46. You’re neither young and spry or old and wise. You still need to cover your gray and squeeze into skinny jeans, but you can’t really compete with the 20-year-old crowd (or the 30-year-old crowd). You’re just middle-aged. But here I am, and I’m doing just fine.

I’m not sure when I’ll get used to the increasing amount of lines on my forehead or how my legs crack when I stand up after sitting on the floor, but I feel blessed for the life I woke up to this morning.

A gentle kiss on my cheek from my husband with a “Happy Birthday” whispered in my ear. Then my sweet Banana came tiptoeing into my room and crawled in my bed to give me a birthday hug. As she left the room, I noticed that she had slipped a note under my pillow. I would share what she wrote, but I can’t – 1. She would kill me 2. It’s mine and I don’t want to share the magic. Jack can’t sneak into my room or write me sweet notes, but he did share his brilliant smile when I walked into his room this morning. He knows it’s his mama’s birthday.

It’s not just my family that warms me, my friends are an incredible bunch. I’ve always heard that when learning a sport you should practice with better players. I’m not an athlete, but I’ve always thought of this when choosing friends. Since I was a little girl, I’ve managed to surround myself with people who teach me, encourage me and make me want to be my best.

Not that my friends have been a group of saints. “Best” hasn’t always included intellectually interesting endeavors, or even healthy activities, but my friends have always been an assortment of people who I find remarkable. I just had a great lunch with a dear friend (thanks Kim) and look forward to celebrating more this weekend. And, thanks to technology, friends from all over my life have remembered my birthday. I’m feeling extra loved.

Lately I’ve been watching the two generation on either side of me and wondering where I fit. My parents and in-laws are spending their retirement years traveling so much that I have trouble remember where everyone is on a given day. And, Anna and her pals get to enjoy the benefits of teenage life, where their only real priorities are working hard in school and make it home before curfew.

Sometimes, I feel a little buried under the responsibilities of being a middle-aged grown-up, but today I’m just trying to enjoy the fact that I’ve accomplished quite a bit in 46 years AND hoping that I have another 46 or so years to go.

Thanks for the Birthday love! I’m a lucky (kinda old) gal!!

Love, Jess

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Happy tears

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We’ve prepared for this news for eight years. I’d worked so hard to be equipped for a different outcome, that I was not ready to hear the words, “Anna is NOT a carrier.”

I was in the middle of World Market with my cellphone pressed tightly to my ear, sobbing, asking to hear the words again.

When Jack was first diagnosed with ALD, we’d never heard of the disease. We had a difficult time understanding the way it had traveled down our family line without appearance – until Jack. An X-linked disease, carried by the mother. It effects only boys. My brothers seemed to have won a lottery, but my son was not so lucky. Nature is not fair.

Of corse the focus for our family has been to help Jack survive the disease, but a question has been asked a lot over the past eight years. Often in hushed tones with gentle hands gripping my arm, “What about Anna?”

My answer was always at the ready. Sounding confident and positive, I’d say that we didn’t know, but weren’t worried. Anna’s odds of being a carrier were 50/50. If she carried the disease the biggest concern was the gene spilling into the next generation. I’d list the variety of options Anna would have to conceive, if in fact she was a carrier. I’d go on and on about the wonders of modern science and finish with,  “By the time Anna is ready to start a family, there will probably be a simple cure for ALD.”

Here’s the truth — underneath that speech, I was terrified. ALD has stolen enough from our family and I wasn’t sure I could find the energy to fight with ALD again. While it would not be impossible for Anna to have children without the mutation, it would be complicated. Having children is complicated enough. And our family has been through enough COMPLICATED.

So for eight years I’ve been crossing my fingers, while trying to prepare for whatever news we would hear. We didn’t want to test Anna until she was ready, but as soon as she asked, we made an appointment.

Meeting with the geneticist last month was fascinating for our science girl, Anna. For her it was interesting and she approached the information like a research project. It was not as easy for me. I did my best to keep a polite smile on my face during the meeting and make the day as festive as possible. Anna has always been the most important audience for my “We are not worried” speech. I think I managed to get away with it because last night when Dan and I shared the news, her only question was, “WHY are you crying?”

We’re so thrilled with the news that I’m still weeping a day later. I hadn’t appreciated the weight of this threat until it was released. Our beautiful girl dodged a bullet. I think I’ll be crying for a while. Happy tears.

Anna’s always been a good student and this is just another test that she managed to crush!!!

Love, Jess

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Anna and I share a lot. I’m just glad that we don’t share everything.

Our uninvited guest.

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What if ALD had never found its way into our family?

I used to ask myself this question every day, sometimes several times a day. The answer was so clear. It was sugary and sweet — in technicolor. Without ALD, our family would be perfect, free of fear and any complication.

Eight years into this new life and I have a harder time seeing the answer. It’s buried under piles of experiences, which have all been a least grazed by ALD. The disease is so much a part of our lives that now it almost makes me feel uneasy to think about life without it. As if it’s the disease that holds our family together.

So much has happened with ALD as the center of our family that it has distanced us from who we all were before those letters entered our lives. It sneaks its way into every part of our day and every plan for the future.

Our lives are constantly forced to adapt so that ALD can fit. Whether it’s adding a solid hour to the morning routine or the need for an extra suitcase (for the pee mats and diapers) when we travel – YES – we travel (we’re NOT going to let ALD win completely). We plan every outing taking into account where bathrooms are private and things aren’t too crowded. Jack likes to touch pretty things, including fresh flowers and teenage girls. We always need to be prepared for wandering hands and awkward explanations. Even our future plans have been altered. Discussions about an empty nest have been replaced by talks of single story living and full-time help.

ALD has not been a welcomed guest, but there has been some good that has come out of our unexpected visitor. ALD makes us constantly jump out of our comfort zone and tackle things that we never would have imagined. Jack has adapted remarkably well and lives a life that, despite its complicated challenges, is broad and quite wonderful. Anna is studying science with the goal of stem cell research. I’m not sure that such a thing would have entered her mind without witnessing the power of nature and the power of science. Dan has learned how to juggle a successful career, while being a supportive lacrosse dad and a hands on hiker with his hopping boy. I’ve learned that I’m stronger than I ever realized and have the ability to manage a family under unbelievable circumstances. And, that I am not scared to share the ins and outs of our family’s experiences – not something I would have guessed I would do.

Generally, I’m impressed at how well our family is doing – proud even.

An old friend wrote me a note last week saying, “ . . . it’s crazy how the thing you think is the worst thing in your life, could turn out to be one of the best. The challenge of a lifetime has made you appreciate your family all the more.”

Sweet words, but I’m often quick to fight these kinds of remarks. I want people to understand that this is not the life I would have chosen for our family. That I don’t believe that it’s a gift. I don’t want to confuse the universe into thinking that we are content with all this – WE ARE STILL LOOKING FOR THAT MIRACLE.

But, as time marches on, I do agree that there are things that we need to embrace. Things we’ve learned. Things that have made us stronger, maybe stronger than we ever could have been without ALD. Still, I wonder what our family would have looked like if that little mutation hadn’t set up shop. The problem is that I’m starting to lose my ability to imagine life without our uninvited guest. It seems that ALD has become a permanent part of the family.

Love, Jess

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May 2007

Never easy.

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Jack turned 17 this summer. 17 is the magic age in New Jersey when you’re granted the ultimate symbol of independence – a driver’s license. His birthday had come and gone without much thought of what he was missing, but lately I find myself driving down the streets of Maplewood, horrified as I see familiar faces behind the wheel of large SUVs. Faces of children who’s diapers I changed.

Not only does it seem dangerous to trust these kids with cars, but it’s another reminder that Jack is no longer moving at the same pace as his “typical” peers. He will never drive. He can’t even sit in the front seat of our car (that’s not a safely thing – it’s that he changes the radio station and loves playing with the heat warmers).

So, I’ve been feeling a little melancholy with this added reminder of Jack’s lack of independence, and then on Friday I got hit with the other side of things.

Further proof that I live between two worlds — Anna has just completed Driver’s Ed. She walked in from school on Friday and announced that she “passed the test”. I tried my darndest to sound happy for her, and I am. I’m looking forward to a day not filled with pick-ups and drop-offs. I’m also excited for her to gain the freedom that a license can provide. But, when I think about handing the keys of our car to our perfect little girl. I start to panic.

Life is never easy. I’m both sad for my son NOT to get his license and I’m freaking out that my daughter WILL.

Luckily, we still have some time before Anna can get her license. Even after passing the test, she can’t even get her permit until June – thank goodness we live in New Jersey. I need a little time to prepare for this next stage of worry for this mama raising kids in two separate worlds.

Love, Jess

Love That Max

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Love That Max is a blog I’ve followed for years, and I am not alone. The blog is currently the #1 disability blog by traffic ranking and a Babble Top 100 Mom Blog. It has been featured on CNN.com, Today.com, Yahoo, The New York Times’ blog The Motherlode, AOL, MSN.com, MTV.com and The Daily Mail, as well as in Redbook, Real Simple, Parents, Good Housekeeping, Woman’s Day, Family Circle and All You magazines.

Ellen Seidman is an incredible writer and an inspirational mother to her three children. I’m honored and excited that she shared my piece, When my son communicates, will he share our secrets?.

Please take a peek and cross your fingers that Jack doesn’t have any secrets about you;-)

Love, Jess

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Coming home is even better.

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Jack laughs with his whole body. His eyes water, his mouth opens and he utters a hardy chuckle, as his entire soul shakes. It’s one of the few noises our boy produces and the sound melts my heart.

The only time we want to quiet the giggles is when he’s eating. Jack’s laughter is so strong that anything in it’s way gets displaced. Food gets spit out, even through his g-tube (the little hole in his belly used to medicate and hydrate). It’s hard to feed Jack around Nonno, Uncle Matt, Uncle Pat or Ronny V. Those men say a word and Jack is in a frenzy.

Dan and I went away last weekend. Our annual excursion to see our dear friends, the Fitzgeralds. We spent the weekend enjoying the scenery of Maine and catching up with old college friends. Time with people who knew us “before” is critical to our survival. Yes – they ask about the kids and we share photos and stories, but it’s a fraction of the weekend. A relief to just be Jesse and Dan for a few days. In our real life, sometimes our identity gets lost in a pile of medical jargon and politically correct words for “disabled” and “handicapped”. With this crew, most of our chats are about music and memories.

The weekend away had the added benefit of no medication, diapers, or early morning dog duties. So odd waking up with nothing on my mind except a bit of a headache. It was perfection. Great meals and wine, hikes, boat rides and even a tour of Portland (thanks JK). But, when Monday rolled around, we were more than ready to get on the plane, anxious to hear Anna’s stories of the weekend and hear the sweet sound of Jack’s laughter.

We walked into the house on Monday to find Maria (Jack’s sitter/my favorite person EVER) cooking a beautiful dinner and Jack holding court at the island. When Anna heard the door, she flew down the stairs and there were hugs all around. We had dinner as Dan and I told the kids stories about the weekend. Anna loves hearing tales of her parents pretending to be twenty and Jack was so thrilled to have his parents home that anything we said was greeted with a smile. Once we were done eating, it was time for some real laughs. It was so good to be home.

Getting away is wonderful, but coming home is even better.

Love, Jess

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I need to keep an eye on Dan

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My husband is a cheater. I really think he has been hiding this from me for at least a week. I noticed the little smirk on his face every time I mentioned it, but he kept telling me that I was crazy and just needed to work a little harder.

Then this morning, while he was in the shower, I checked his cell phone. I found the app and I hit “sync”. I had my proof and I stormed into the bathroom, “What did you DO last night Dan?”

He peeked out from the glass shower door with a funny expression, “Jess, I was home before 11:00. You were sound asleep.”

“If you were asleep before mid-night how did you already get 1550 steps today!”

Generally, I am not very competitive. I’ve had my Fitbit for two years and I’m usually more than content reaching my 10,000 steps a day (about 5 miles). It means I’ve walked the dogs enough to keep them healthy and moved my body enough to fit in my mom jeans. Occasionally, I do except a “challenge” (where you compete with other Fitbiters), but only with people who are 10,000 steps a day folks – I don’t really want a “challenge”, just enough motivation to walk extra mile or two.

Last week I found Anna’s rarely used Fitbit and told Dan he should give it a shot. He gets frustrated by his lack of time to exercise during the week. I thought tracking his steps might be interesting to see how much he’s really moving during the day. I also wanted him to see what an active wife he has — no bonbons and relaxing for me;-)

I downloaded the phone app, set up the Fitbit and showed Dan how to use it. “And, I set us up for a challenge. Won’t it be fun?!”

Last week he beat me by five miles. It nearly killed me, but I rationalized that his commute was good for a couple of miles a day and he had a ton of meetings last week. The weather had cooperated enough for him to walk from meeting to meeting. THAT would never happen again.

This week I set up my schedule so that I could walk two times a day. I added some other “friends” to the challenge and was ready to show everyone that Jesse is the Walking Queen. No luck. No matter how many steps I took, Dan was ahead of me. I asked him repeatably if he’d check to see if his Fitbit was working and he made me feel like I was being silly.

This morning after our confrontation in the bathroom, Dan started getting dressed. He was teasing me about being paranoid, and I was starting to feel rather foolish. Then I looked down at his phone and realized that he had just earned 79 steps by putting on his tie.

I don’t just want to be Jack and Anna’s mom, Dan’s wife, an art teacher, a writer, a pharmacist, a driver, a model (don’t laugh — long story) — I WANT TO BE THE WALKING QUEEN (at least at 26 Clinton Ave. – my other “friends” are beating me too)!! I made Dan switch arms to see if we can get on an even playing field. We are going away this weekend and I’m going to keep a keen eye on my man. No funny business Dan!

Love, Jess

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