shi^ty disease/amazing people

Years ago my mother and my best friend, Enger, planned a surprise party for my birthday. It was just a keg, some balloons and a pile of friends, but it meant the world to me — I was so surprised when I walked into my dirty, second floor apartment at The Woodrow and saw all those smiling faces. It’s been a while since that day (30 years!!), but yesterday I felt that same feeling of overwhelming confusion and love.

I’m not someone who ever had a bookshelf full of awards, but now I have one, and it is proudly sitting on my mantel. 

Folks at ALD Connect asked me earlier in the week if I would help them as they gave an award to my friend Kathleen O’Sullivan-Fortin. I jumped at the chance of applauding her for all of her hard work — she’s a founding member of the the board of directors of ALD Connect and is responsible for bringing me into this community, while showing me tons of love and support. When it was time for the award ceremony, and I went upstairs to sit at the computer and brought Jack with me figuring that Jack could help me cheer for Kathleen. 

The call started. Suddenly Dan danced into the room with balloons and Anna congratulating me via his cell phone. Then Kimmy V walked up the stairs with streamers, holding a trophy.

Holy smokes!

I’ve sat through these award ceremonies and always felt that the awards were so earned. Amazing people who have done so much for the ALD community. Yesterday I was honored along with Nic and Alison Adler, Kathleen O’Sullivan- Fortin and Dr. Keith Van Haren — some of my ALD heroes. To share such an honor with that crew seems a little odd to me. ALD Connect has done far more for me and our family than I would ever be able to do. They have educated us and supported us and given us a community. 

Community.

If you are reading this, I want you to stop and ask yourself if you have a community. If you don’t — find one. 

ALD is the worst thing that has ever happened to our family. It’s a shitty disease that stole so much from Jack and is now effecting my mother. It has me in constant fear of when I will develop symptoms that might make caring for Jack difficult. It’s a disease that has taken the lives of so many sons, nephews, brothers, fathers. I hate every ounce of this disease, but I’m so lucky to have found this community of remarkable people. They hold me up and provide support. They share information and are always there when I need to yell and scream or laugh and cry.

If I could, I would return this beautiful blue trophy — but I can’t, so I will put it on my mantel and remind myself every time I see it that ALD sucks — but the people are amazing — and maybe a little nuts to recognize me;)

ALD — shitty disease/amazing people.

Love, Jess

There is an angel donor that is matching donations this week. I would like to ask you to consider to making a small donation to this incredible organization.

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!

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

 

GivingTuesday

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CPNJ / Horizon High School asked us to make a donation on #GivingTuesday and to take an “UNselfie” sharing what inspired us to donate.

“What does Jack do at school?” is a question I’m often asked. I usually answer, “Jack does what every other 16 year-old boy does – he hangs with his peeps and flirts with pretty girls.”

In fact, Jack does a lot more at Horizon High School. He gets therapy (PT, OT, and Speech). He has classes in Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math. He works at the school store. He participates in modified sports. He attends dances and parties and plays. He goes on field trips to Trader Joes to practice “appropriate behaviors” (although I think that might be more hanging and flirting).

After The PG Chambers School we were concerned that we wouldn’t find a good fit for our boy as he entered his high school years. There are no schools for ALD boys post transplant – no schools designed for handsome young men who understand inappropriate humor but can’t speak or reliably use the bathroom. We did find several schools that could handle Jack’s needs but Horizon had something that the others were missing. They approach school the way that Jack approaches life – with GUSTO!

Cerebral Palsy of New Jersey (CPNJ) runs programs for people of all ages with all sorts of “complicated” issues. And, they treat each of those people with respect and devotion. Monica (Jack’s one/one aide and a friend) often sends home pictures of Jack during the day. Whether it’s him in the classroom, planting in the garden, or rockin’ out at a dance party he always has a huge smile on his face. THANK YOU CPNJ FOR CONTINUING THE SMILES!

http://www.cpnj.org/givingtuesday

Love, Jess