Thanks to C Lee Reed at Helicopter Mom and Just Plane Dad for posting my guest article on their blog about my 4-year-old daughter’s intelligent, compassionate, and often funny way of understanding that I’m donating a kidney to my wife, her mom Amy.
I’m Donating a Kidney to my Wife Amy Next Week
by Jason DidnerMarrying Amy and adopting Holly are easily the two most important things I’d done in my life up until now. These days, a new decision has been presented to me and the choice was clear. In order to preserve my wife’s precious life and give my very young daughter a mother who can get down on the floor and play with her unfettered by dialysis machines and chronic fatigue, the moment of truth has come where I have the power to give my family the future it deserves, just by saying ‘yes’ and accepting the experiences that comes with that choice. This is the choice that protects the other two most important choices I’ve ever made. We’ve known since early in our marriage that Amy was experiencing steadily declining kidney functioning as a complication of Type 1 Diabetes, which she’s had since age 8. About 2 years ago, we were instructed to start seeing a kidney specialist regularly and consider the merits of a kidney transplant. Amy’s excellent diabetes specialist, Dr. Joseph Giangola, suggested that Amy could be a good candidate for a kidney-and-pancreas transplant. Both would come from the same donor, who would have to be deceased in order to donate the pancreas. Typically, victims of accidents who have indicated in their lifetimes a willingness to donate organs are the donors of these precious organs.
A kidney-pancreas transplant offers the added benefit of temporarily “curing” type 1 diabetes for as long as the transplanted pancreas functions, which is currently in the 5-10 year range.
Over the course of several months, we started making very frequent trips to Hackensack University Medical Center’s transplant team to get Amy checked out through numerous medical tests to ensure a transplant and its effects would likely be safe for her. All our efforts had gone toward becoming a recipient for a deceased person’s kidney and pancreas. A discussion with the transplant team’s kidney doctor, however, brought up another concern: As Amy’s kidney deficiencies made her progressively more exhausted while facing the daily challenges of raising a toddler, this was a sign that her kidney decline might be reaching a critical point – a point where perhaps she’d have to start dialysis until a matching kidney/pancreas from a deceased person might come along.
There would be only one controllable alternative to dialysis, given the unpredictable nature of deceased organs becoming available. A living, healthy person would have to consent to donating a kidney. That person could be a relative or a total stranger. The blood type would have to match and the antibodies would have to be compatible.
I agreed to become an option, a fallback plan, in case a deceased kidney and pancreas would not work out by the time she’d absolutely need either a transplant or dialysis. I began the process of getting tested and interviewing with doctors and social workers. It was discovered that we were in fact a compatible match and I could donate my kidney directly to Amy.
To the best of everybody’s current knowledge, my life expectancy will remain as it already is, even after donating a kidney. My remaining kidney will grow in size and capability in the coming months, able to effectively rid my body of toxins enough to last a lifetime. Now probably won’t be a great time to take up cage fighting or motorcycle racing, as I have to protect my remaining kidney from injury.
The transplant is set for Tuesday morning, 5/26 at Hackensack University Medical Center. Amy and I will be operated on in neighboring operating rooms.
There have been gigs to cancel, substitute performers to find, help to prepare (me asking for household help…YIKES!), documentation to write for a consultant who will be available to deal with the technological emergencies that come up in a workplace. There’s been plenty of worry that I can’t prepare adequately. But once we get picked up to check in to the hospital, all that will change to “just being. Just healing.”For Amy that recovery process will take longer but I understand that by the 2nd day after surgery, she’ll really feel the benefits of the kidney working like it hasn’t since her mid-20s. I remember reading a story of a dad who needed a kidney and as his kidney function continued to decline, all he could do was sleep. Now after surgery he was playing basketball with his son for the first time ever. This story is strong inspiration to me that Amy and Holly can have an energetic relationship like never before. Amy’s favorite game since childhood has been tennis and I have hopes that she’ll rekindle that love for the game and share it with Holly.
Over the next several months I’ll continue sharing my thoughts and stories about this point in my family and personal life. I hope the sharing of these experiences bring you inspiration and knowledge that benefit you and your family as well.
What are your most important life decisions and what effect did those choices have on your life? What important choices lie ahead for you? I’d love for you to join in the discussion by commenting below.
For more information about organ and tissue donation, see the New Jersey Sharing Network.
Tomorrow I will have a truly unique experience in preparing to give an out-of-town concert this weekend. Thanks to the power of the Internet, I will be in my home studio having a live rehearsal with two musicians in Washington, D.C. who will power my band for this concert. “Uncle Devin” Walker and “Wonderful Wardell” Howell will be at Devin’s place in D.C., connected to me in real-time using the JamKazam computer application. Using microphones, headphones, and our Internet connections, we’ll be able to interact almost like we’re all three performing together in the same room.
Making music together in real time presents special challenges that go beyond the use of Skype or Facetime, where the experience of brief delays or “latency” is fairly common and usually not disruptive to a conversation. Those same little delays can throw off a band’s rhythm quite a bit when jamming together from different locations. To keep the JamKazam session running as smooth as possible, it’s important to plug a network cable directly into your Internet router (sometimes built right into the modem supplied by your Internet service provider) and not rely on the convenience of Wi-Fi, which also comes with its own little time delays when streaming audio or video.
This will be my first experience with JamKazam and I’m excited about the possibilities this opens to connect with fellow musicians in a new and inspiring way. In this case it means that our impromptu band for next weekend can be well rehearsed ahead of my trip to the D.C. area. In my case, I’m counting on JamKazam to meet a specific need in prepping for a show with musicians I’ve already become familiar with. But JamKazam can also connect musicians with like-minded musicians with similar tastes and levels of mastery. The search tools make it possible to look for musicians to jam with on a specific instrument or in a geographic location. The folks at JamKazam told me that video capability is coming about 2 months from the time this article is published.
If you’re in the D.C. area and have kids who could use some good family entertainment, come out and rock with us at Jammin’ Java in Vienna, VA this Saturday. We take the stage at 10:30. This is a one-of-a-kind show where my Jersey style, Bruce Springsteen influenced rock-n-roll for kids will meet the funk/jazz/R&B stylings of my D.C. friends. I’m calling this show “Jersey Jason Meets the D.C. Jungle Gym Jam.”
Would you like a free sampling of my music? Help yourself to three of my songs at http://www.njkindiemusic.com/dc-area.
How has the Internet connected you and your family with people who live outside your area? What are your hopes for the possibilities the Internet holds in connecting people? Please share your comments below.
Check out the Children’s Section at Washington Street & 3rd Street!
This Sunday, May 3, a bank parking lot becomes a very happy place for lots of kids & families as it does twice a year. What’s normally the site for routine errands will be alive with bouncing, sliding, riding, laughing, face painting, balloon twisting and dancing as the Hoboken Spring Arts & Music Festival kicks into gear.
There will be a bouncy house, jumbo inflatable slide, carnival rides, face painters, a sand art station and balloon artists. There will also be five top-notch children’s entertainment groups on the stage in the children’s section of the festival.
At noon, Erin Lee & the Up Past Bedtime Band will delight kids and their grown-ups with a highly interactive show filled with bubbles, confetti and a fine assortment of musical styles.
Garden Street School of the Performing Arts will entertain at 1:00, with their staff of teachers and managers putting on a show that will inspire you to enroll your kids to tap into their inner performer so they can learn to jam along.
My own band Jason Didner and the Jungle Gym Jam will start at 2:00, playing an energetic show containing some fan favorites and introducing some brand new songs that celebrate summer fun, family travel, superheroes and more. Find out why Jim Testa from NJ.com named us one of his picks for the festival. Download three of our tracks for free so you can sing along with some of our tunes!
Stick around for Michael Napolitano and Preschool of Rock, a very popular early childhood music teacher who offers classes in Hoboken. Michael’s group sold out the season opener of Maxwell’s Mini Music Mondays with a thrilling family-oriented show last winter.
At 4, Carol Lester will belt out her award-winning songs for the enjoyment of kids & families taking in the late afternoon time at the festival.
The live entertainment for kids wraps up in thrilling fashion with Little Club Heads, who will transform the kids section into a full blown dance club party perfect for children and their grown-ups, starting at 5:00.
Since Amy and I founded the Jungle Gym Jam back in 2013 when Holly was just 2 years old, we’ve been constantly evolving as a creative family and as a band. Amy’s original role was as a behind-the-scenes “educational consultant,” drawing on her experience as a teacher to ensure our songs would be as enriching as possible for young minds. Her co-writing of our lyrics was really her place to shine.
Even in our earliest of performances, my daughter Holly, ever the Daddy’s girl, was always happier being close to me, on the stage, than removed from me, out in the audience. So, she would be perfectly content to be standing onstage munching her snacks, not too concerned with the fact that all eyes were on her. For me this was fine because it genuinely represented an authentic family act that was demonstrating “This is how music brings my family together! It can bring yours together too!”
As our music, our reputation, our marriage and our daughter continued to grow, Amy and I found our relationship with the concept of Jungle Gym Jam music evolving too. Over these past 2 years, Amy, Holly and I have watched lots of live children’s bands interact among themselves and with the families in the audience, each in unique and engaging ways. Seeing this sparked ideas and conversations among us to build more interactivity into our shows. Amy was emerging as a natural co-facilitator of this interaction in our shows. We tried having her be a “guest puppeteer” for a song or two and she enjoyed it. Her performance went over well with the kids in the audience too. But that created the issue of Holly now being at a remove from both her parents while we’re onstage.
So last summer we tried something new. I brought home ukuleles for Amy and Holly. Amy learned some chords and Holly simply strummed along without concern for the chords (and without enough volume to cause dissonance with the song’s melody). We performed as a true family trio at Eatontown and Sea Girt Public Libraries on our mini-tour of the Jersey shore. Amy and Holly were essentially “guest artists” for one song at the time.
Flash forward several months and a new idea emerged: I picked up cajon drums (box drums that you sit on and play the front surface) for Amy and Holly in time for our featured concert performance at First Roots Studio in Manville last month. Amy’s musical strength turns out to be her impeccable internal sense of rhythm, giving me a rock-solid foundation from which to play guitar and sing. The fact that she would now be onstage for most (or all) of the show now put her in a great position to add some banter and interactivity to the show. Now it was all coming together: the puppet appearances, the dialogue, the musical enhancements. Now that Holly is also onstage playing a drum, she gets to be close to Mom & Dad throughout the show and is very secure with us. She’s also showing some leadership among the kids in attendance. She kindly but firmly warns other kids to leave our equipment alone and stay away from speakers that could fall on them, etc. Apparently, she saves her own youthful recklessness for when she’s at home.
Of course, when you involve your own 4-year-old child in your act, there is a necessary sense of giving up the idea of perfection and control; the spirit of her onstage presence is more important than a virtuoso performance or even the predictability of knowing what instrument she’s in the mood to play, or how long will she be comfortable in her own place onstage before she prefers to just cuddle with Mommy while I play on. But knowing my family, I wouldn’t have it any other way!
At this time, we offer two versions of the Jungle Gym Jam – the family acoustic trio – the Von Trapp traveling family troubador version of what we do — and then there’s the electric version, a little more reminiscent of the Van Halen family! As always, “Rockin’ Ross” Kantor powers this version with his great drum talent. New bassist “Low-note Lou” DeMartino, a mainstay of the Jersey Shore music scene, glues the rhythm to the chord structures with his tasty basslines. Rounding out our sound is “Cowgirl Casey” McCleary whose vocal harmonies always add a touch of class and her multi-instrumental versatility adds delightful textures to our sound and even gives me the opportunity to put the guitar down and give a little puppet show of my own while I sing. In the full-band version of our show, Amy and Holly tend to make an appearance for a few songs, creating a special and memorable moment and a touch of variety.
Some of my favorite family experiences since forming the band are based on our out-of-town travel. When we’re on the road, staying overnight in a hotel the night before the show, it really does feel like a working vacation, one where we’re all working toward the same goal. The daily grind of home life seems further away and we do feel like we’re on a mission, pursuing a dream, and bringing joy and enrichment to families who live in different places.
My music making has always been a family business in a way, long before it was ever a business. My parents, who used to come to almost all my school band and chorus performances when I was a kid, are frequent travel companions of ours, offering moral support, photography, videography, marketing and additional fun and comfort for Holly while I take on the setup and sound check responsibilities.
Some of our gigs near home are starting to take on that feel of a tour/vacation, especially when we play in a local town we’ve never been to before. Last weekend we played at Liberty Savings Federal Credit Union in Union City, NJ. This is a nearby town with strong ties to Cuban heritage. The “Cuban Sandwich Queen” restaurant right next door caught my attention as we were loading in for the morning’s performance. Sure enough, after the gig it was lunchtime; Amy and Holly were game to try something new, so we went in, Holly tried (and really liked) her first Cubano sandwich and Amy remarked how much doing this gig felt like a traveling vacation type of gig. The nice sunny, warm weather didn’t hurt that notion any.
You can learn more about our performance schedule, which happily includes more travel and visits to new places, at http://junglegymjam.com/tour.
I’m also offering three free songs for your family’s enjoyment on-the-go at http://njkindiemusic.com/free-tracks.
I believe that every job or business is in some way a “family business.” How have your pursuits of your life’s purpose involved your family? Please comment below.