Monthly Archives: December 2015

The Skimm and the Panda

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Yesterday morning, The Skimm brought me an early Christmas present.

I get most of my news from the morning talk shows. A sound bite of serious, sprinkled within hollywood gossip and seasonal recipe ideas. It’s about all I can handle, but several months ago a friend recommended I check out The Skimm. Perfection. It’s an email that arrives every weekday morning with the important news stories of the day. It’s written like a friend is telling me (for the “Jesses” out there, not the “Dans”). No Skimm on the weekends which makes it even better – who really wants news on the weekends?

Our weekday morning routine is nuts here. We rush around, as if the school bus arriving is the strike of midnight and we will turn into pumpkins. Showering, toileting, eating, medicating, hydrating, brushing and tackling Jack’s “special shoes” onto his “special feet”. When we are done, Jack and I relax, plant our bottoms on the stairs, and open up the Skimm. Jack sits up straight, puts his arm around my neck and we read the news for the day.

Yesterday, among the clutter of news about the fight against ISIS, E.coli and gun control (pro gun control/con ISIS and E. coli), was a story about THE PANDA IN THE SNOWMEN. Finally, I understood what I’d been half-hearing all morning on the Today Show. I double clicked the link so that I could check it out. I’m not great at getting through a newspaper, but I am good at puzzles and within a minute I saw him. “Jack I see the panda. How about you?”

I pointed my finger, which he took without hesitation, and he pointed directly at the panda. Seconds. Amazing.

I know that some of you are thinking that it’s cheating because I let Jack use my hand to point. I thought the same thing when the school told me that it was their latest technique for having Jack make choices. I figured that it was like using a ouija board and that whoever was in change was subconsciously directing. I assure you that it’s not. Jack is quite clear about his intentions. And, Jack quickly saw the panda.

A friend commented to me that the trick with those types of puzzles is to relax your eyes and not stress. No wonder it came so easily to Jack. Jack lives his life fully relaxed and with no stress. We should all be so lucky.

MeRrY ChRiStMaS EvE!!

 

Love, Jess

 

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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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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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