Technology is a wonderful thing…here I am in Jerusalem, several thousand miles and a few times zones east of home, and yet I can “chat” with my Mom through a virtual connection. We chatted for a while this morning and at the end of our conversation she typed “please be safe”.
I get it! Every mother wants her children to be safe. So many others have also typed those words in emails, Facebook posts and more. I absolutely appreciate everyone’s concern…but here’s the interesting thing…I feel safer here in Jerusalem than I do walking the streets of Center City Philadelphia!
I know, I’m in the Middle East and the news from this region is tumultuous at best. I get it. However, having watched and read Israeli news for the past several days, I can tell you that there has been more violence reported in New York City than there has been here in Jerusalem. Yesterday we returned from our excursion through the city and turned on the news to headlines of a mass shooting at the Empire State Building. My local South Jersey news is filled with similar stories every day…Philadelphia, the City of Brotherly Love, is a war zone! Yet, when I say to someone that I’m heading into Philly for dinner, nobody ever says “be safe”.
On Thursday we ate lunch lunch at a nice open air cafe called Roladin. As we sat, an Israeli IDF soldier came walking in to eat with his family. This would have been essentially nondescript except for the fact that he was armed with a 9mm hand gun on his belt and a Tavor automatic assault rifle slung over his shoulder. This is not unusual, and frankly makes me feel more safe than any local police force in the US!
The fact is that there are more important issues at stake here, and the street violence that takes place at home just doesn’t seem to exist. Yes, there is the constant background story of unrest in the middle east. Will the Israelis strike out against the threats coming from Iran? Perhaps, but if they do, it creates a global problem that could just as easily impact the east coast of the USA as it could impact central Israel. More importantly, no sense of increased situational awareness on my part can do anything to keep me from harms way should something like that occur.
Please understand, I’m not trying to minimize anyone’s concern for me and my family…those thoughts are greatly appreciated. But it is interesting perspective when you consider the every day relative risk that we don’t think twice about when we head into Manhattan or Philadelphia for an evening out with friends…I’ll take the Western Wall over the Empire State Building any day.
Today we explored the Christian Quarter of Jerusalem’s Old City. Even from a Jewish perspective it’s completely fascinating. As it relates to what I’ve said above, this City is the religious epicenter of the planet. Perhaps it’s this religious base that helps maintain some of the sanity even though it is also the root cause of the conflict. To me, it is a never ending and amazing juxtaposition of ethics and morals. It’s been going on for thousands of years, and will likely continue for equally as long.
As we walked along the Via Dellarosa, which is the path Jesus took as he carried the cross to to spot of his crucifiction, we came across a tiny passage that led to some steps. The boys were hesitant to head off the beaten path, but I’ve watched enough shows on the Travel Channel to know that it’s off that path where one finds the best stuff. That proved to be true today. We came out into a small courtyard filled with tiny green doors. Who knows where they lead, but as you will see below, they made for some interesting photographs!
It’s rest time now. We’re heading out to a very cool show tonight at King David’s Citadel!
To anyone exploring a major US city today – please be safe! Enjoy some of my photos from today’s exploration.
The View from our apartment
Cool T-shirt! The red Hebrew letters spell Sponge Bob!
I was thinking about the fact that a dreidel, in America, has the 4 Hebrew letters nun (נ), shin (ש), gimmel (ג), and hay (ה). They stand for the phrase “nas gadol hayah sham”, or “a great miracle happened there”. Here in Israel, the shin would be replaced with the letter po (פ) and it would mean “a great miracle happened here”. Simplified, the miracle refers to the Chanukah story in which the oil in the great temple burned for 8 nights when only expected to last one. That temple has since been destroyed. It stood atop the Temple Mount here in Jerusalem, currently home to the Islamic Dome of the Rock. The land surrounding that site was supported by huge walls, the western of which is now known as the Western Wall, the Wailing Wall, or the Kotel. That will be the location of Ryan’s bar mitzvah on Monday.
While not all of them are miracles, important things still happen there (or here, depending on your geographic location). Each day at the Kotel, thousands of people stuff the walls cracks and crevasses with tiny folded notes of prayer. It is thought that this place is the closest place that one can get to God, and so leaving one’s personal prayers and pleas in this wall will more likely result in their being answered. Whatever your belief, this is an awe inspiring place to be. It’s a holy place, and to be able to stand at its base and know all that it represents in our tumultuous history is in some respects miraculous in itself.
Today, an important thing happened here! There are now three tiny notes within the cracks of the wall asking for help for two important people and one important group of people. While I won’t necessarily reveal what is written on those notes, I want to tell their stories so that you can also keep them in your thoughts and prayers…in deference to a certain sister-in-law (I have 5 of them, so you’ll just have to figure it out) who called me verbose in an email this morning, I’ll be as brief as I can!
First, the group. I want everyone who is a part of my enormous family of those impacted by Type 1 Diabetes that I have asked for help! All the miles that I ride my bike, all the walks and galas, all the money raised may still not be enough without a little Divine intervention!
Second, Barbara Beitch, or Doctor Beitch as she’s known to those of us who are fortunate enough to have been taught by her, is my high school biology teacher. Dr. Beitch was extremely influential on me as I grew up, and will always be an incredibly important people in my life as a result. Tragically, over the pasts few years she has experienced more loss than most of us would want to imagine. Dr. Beitch’s first loss came more than a decade ago, when her daughter Debbie passed away. Her husband Irwin, also known as Dr. Beitch, passed away just a few years ago. Then, on August 5 Ricky, her son and a long-ago friend of mine, died suddenly at the age of 47.
Last, but certainly not least is Uncle Barry….this one’s really hard! Barry Lang is Rachel’s uncle and ranks among the two funniest people that I have ever met in my life (Robin Williams is the other). More importantly, though, he is a most genuinely loving people and would do anything for any of us at any time! What Barry lacks in height, he more than makes up for in heart! He is truly a mensch! Over the past twenty years I have shared many experiences with Uncle Barry that I will never forget. Sadly, his battle with cancer may come to an end very soon, and I am compelled, while in this holy land, to leave a request on his behalf within the spaces of the wall as well. This note I’m choosing to share. Not the content…that’s between me and the Wall…but the placement, because I would like him and his family to see that we left it here for him! We all love you Uncle Barry!
Three important things happened here today! That was our purpose and agenda. In completing that mission, we wandered the main streets and back ally ways of Jerusalem…he are a few more images that I captured along the way.
Look! I’m in a photograph! It’s proof that I did actually travel with my family…and I have to say that it’s a good looking family!
Herb is looking quite chic with his murse!
In the United States we have garbage can, recycle bins and dumpsters. In a land constantly under threat of attack, they have bomb receptacles instead! At least the historical society ensured that it was painted to blend with the surrounding landmarks of importance. This was seen just outside the entrance to the Church of the Holy Sepulcre.
Why the heck would anyone intentionally get boogers on their flute? I can honestly say two things about this…first, I have never seen this done before. Second, he was quite good!
- We’re Heading Back: Israel 2012 (scottkasperphotography.wordpress.com)
Well, we made it! It’s been a long day but we got to Israel, got settled into our apartment, and actually had an action packed first day! The fact that we are all still standing amazes me! Personally, I woke up at 03:30 AM on the morning of Wednesday August 22 and have been up ever since…as I write this it is 7:45 PM on Thursday August 23!
For some odd reason, this trip has started off remarkably smoothly. We were all packed and ready to go 24 hours in advance. We did not forget anything (of consequence, that is). Please understand that this is so far out of the norm for us. I’ll admit that I’m not a great traveler. I get easily stressed and it usually starts a week or so before we leave. That didn’t seem to happen this time, so we were off with a great start!
The flight was long! 9 hours 35 minutes and my movies in the seat back in front of me froze about half way through the flight. That said, we made it unscathed and arrived at Ben Gurion Airport at about 06:30 local time.
Our apartment for the next week is awesome! As I write this I am sitting on the balcony listening to a concert playing off in the distance…somewhere toward the walls of the Old City. After we got settled,me went and found a place for lunch…nobody slept on the airplane, some were all extremely tired…Jake perhaps more than anyone!
After lunch it was crash time…for some of us anyway…Rachel and her parents fell hard asleep, some took the boys to the pool here in the apartment building. After swimming for a few hours and realizing that we need to stay awake a few hours more, it was off to the Old City where we wandered the streets for a few hours, got some dinner and ice cream and then headed home.
There are a few noteworthy photos from our stroll. First, we all fell in love with the SPOVEL! It is the perfect utensil with which one should eat ice cream. It’s the size of a spoon, but shaped like a shovel! I’m not sure why these haven’t made their way across the pond to the USA.
Second, please recall that I live in South Jersey, where our local farmers (that’s why it’s called the Garden State folks) grow the best sweet corn I’ve ever tasted. With that in mind, I have to say that tonight is the first time I have encountered a Corn on the cob vendor outside of the Burlington County Farm Fair! I will guess that his corn doesn’t match up to well with my hometown favorite. What I found most striking, however, is the tremendous contrast in color between the vivid yellow corn and the rest of the drab, beige surroundings of the Old City wall!
Finally, I love walking the ally ways of the Old City markets. The colors, the smells (good and nasty!), the pushy vendors, and the amazing people watching! Check out the wonderful smiles on the women in the foreground as they try on various brightly colored scarves.
As we walked back to the apartment, the streets were less full and we took our time, enjoying the cool, pleasant evening air. We’re all getting ready to hit the sack…I’m not sure what we have in store for ourselves tomorrow, but I know I’ll enjoy filling you afterwards! Here are a few more parting shots for the evening!
10 extra credit points to anyone who can identify this famous landmark!
It is with deeply mixed emotions that I write the first entry in the 2012 edition of my Journey to Israel blog. For any of you who may want to see the photos and read the thoughts that I shared two years ago, you can find it here: Israel Journey 2010
Why mixed emotions? Rachel, Matt, Ryan, Jake, my parents-in-law, and I are returning to Israel tomorrow to celebrate the bar mitzvah of my son Ryan. This is, in many respects, a Jewish parent’s dream! A little more than a year ago, as we started to plan the festivities related to this right of passage, Ryan declared that he wanted to become bar mitzvah in Jerusalem. We discussed this with him to make sure that he understood that we could not do both! He could not have this wonderful (and costly!) trip to Israel and also have a big blow out bar mitzvah like he is accustomed here in NJ. We asked him to think about it, and he did.
He read there once before. At the age of 10 he read Torah as a part of the ceremony we held in honor of the b’nai mitzvot of his brother, Matt, and cousin, Noah. He did a remarkably beautiful job reciting the small passage that he had taught himself…and apparently it made quite an impact on him and his sense of Judaism.
So off we go. But wait…what about my parents, and my brothers, and Rachel’s siblings? What about Ryan’s 15 first cousins? What about the numerous close friends and other family members with whom we would have found great joy in celebration?
Here’s what I have come to realize. At the heart of it all, this is not about how I feel. It’s not about any of those important people in our lives who will feel disappointment in missing this occasion. It’s not about the money or the party after the service. At the core of it all, it’s about the fact that this young man feels so passionate about becoming bar mitzvah in Eretz Yisrael, the Land of Israel, that he is willing to sacrifice those celebrations for the opportunity to bond with the deepest roots of his heritage. How could we say no?
I had a feeling this would happen! In 2010, we were in Israel for three weeks. We stayed in a small village in Northern Israel near Lake Tiberias (the Sea of Galilee or Kinneret), called Yav Ne’el. We lived in a very nice rental home and used it as home base for daily excursions around the country.
One day I realized that Ryan had been wearing a Yarmulke (kippa) each of the previous several days, and as I noticed him placing it upon his head as we prepared to leave the house for the day I told him he didn’t need to feel obligated to wear it. “I know, Dad” he told me. “But it just feels right if I do!”
So, as much as I know that those who could not join us will miss this, and as much as I will clearly miss them, how could we deny this opportunity to Ryan? It will admittedly feel odd to be at my son’s bar mitzvah service without my parents, my brothers, Rachel’s siblings and their families, and others who are truly meaningful in my life. However, I am confident that we are giving my son a gift that will remain inside of him for eternity, and do so hoping that he will pass that gift along to my grandchildren some day as well! I hope, if that happens, that I will once again return to Israel to join them.
Stay tuned over the next 9 days, and join me and my family and we continue this journey. We are all extremely excited and have been looking forward to this trip for quite some time! I’m know that there will be many thoughts and photographs to share along the way…they will range from personal, to political, to religious, and more. Upon our return, those thoughts and images will be turned into a book that I will give to Ryan so that he will have a permanent record of his Dad’s perspective on this important journey!
- From generation to generation! (scottkasperphotography.wordpress.com)
It was the summer of 2010. My oldest son Matthew had turned 13 and completed his right of passage to Jewish adulthood by becoming bar mitzvah in our synagogue here in South Jersey. That was the first half of his journey, as he would soon thereafter read Torah at the Kotel, or Western Wall, in Jerusalem later that summer. My son Ryan, now almost 13 prepares to return to that same spot in Jerusalem where he will read Torah in just a few weeks from now.
Matt is my oldest and therefore my first son to have completed this journey. At the time I felt as though there is no way it could ever get better than the feeling I had watching him and listening to him as he developed from boy to young man right before my eyes.
Fast forward a few years…the journey begins again, and I have to say that I am experiencing the exact same emotions and thoughts…it’s déjà vous all over again as my middle son Ryan has officially started this journey of his own.
Why officially? He’s been studying (and I must say extremely well!) for months. He has mastered his service, his torah, his D’var Torah (speech reflective of what he has learned in studying Torah), and more. So why has his journey officially begun? To understand that, I have to bring you back 31 years. When I was taking this journey, my dad started what I have now passed along to the next generation…and hope that my sons do the same…we say l’dor v’dor…from generation to generation.
Every young bar mitzvah student requires a few items before the big day arrives, namely a yarmulke, a Tallit (prayer shawl) and Teffilin. When I was 12 years old and preparing to become Bar Mitvah (which in Hebrew literally means son of the commandments) my dad took me on a pilgrimage. We loaded ourselves in the car and headed to Yankee Stadium!
Okay – important clarification for any of you who have come to know me as the consummate Boston sports fan – I grew up in Southern Connecticut where sports allegiances are evenly split between Boston and New York. My dad was and remains a New York sports fan. In addition, 1981 Yankees had a roster that included some of the all time great players and personalities of baseball history…Goose Gossage, Tommy John, Lou Pinella, Bucky Dent, Reggie Jackson and more. We went to a double header…I have no idea who they played…I just know that I’ll never forget the double header at Yankee Stadium with my dad!
Before the game, however, we went to Manhattan’s East Side where pickle barrels on the street, kosher delis and judaica shoppes were abundant. We went into a shoppe where an older man with a skull cap, thick white beard, and heavy eastern European accent helped us pick out the Tallit and yarmulke that I would wear in synagogue on my big day.
At the time, to me, this part of the day was just an errand. It was something we needed to do just like we needed to buy my suit and get some new shoes. It was watching Reggie Jackson come to home plate that was more important to me at the time!
Fast forward to the spring of 2010. There was no way that my son Matt would take his journey to becoming bar mitzvah without first taking a journey to a baseball game and judaica shoppe with his dad…and of course his grandfather! Given our allegiances to Boston sports, we made the trek from South Jersey to Fenway Park and the judaica shoppes of Brookline, Massachusetts. I venture to guess that it was a trio Matt will never forget.
Now it’s Ryan’s turn. We’re here in Boston again and he’s loving every minute of it. He’s an avid soccer fan, so the New England Revolution was the sporting choice of the trip. This morning we will head to Brookline with my dad and we will get Ryan the items he will need for his Jewish life.
Here’s the more important task for today – we will hopefully instill in Ryan the desire to make this pilgrimage 30 years from now with one of his children. The religious aspect is important, and shouldn’t be diminished. However, the simple tradition is far more important…l’dor v’dor…from generation to generation…it’s simply good stuff!
Stay tuned to this blog…it will continue with stories and photos from our upcoming journey to Israel…we can’t wait and hope you’ll enjoy coming along with us…
Webster’s Dictionary defines the word Family as a group of people united by a common affiliation or characteristics.
That definition holds a significant meaning for me and for my “family”. Using its most basic interpretation my family is defined by the following:
- My beautiful, loving, patient, and devoted wife (who doubles as my best friend!!)
- Three amazing children (it’s hard for me to resist insert bragging here!!!)
- My wonderful parents who helped guide me to becoming the man that I am today
- Two incredible brothers
- A mother-in-law and father-in-law who love me as one of their own
- Seven brothers and sisters-in-law (you could delete the “in-law” part…they all feel like siblings to me!!)
- And fifteen nieces and nephews that would make any uncle proud every day!!
For better or for worse my life expands that definition, as I have a much larger family. At times I feel fortunate to be a part of this extended family. Other times I rue the day that we adopted each other into our respective lives. I know personally many members of this family, yet there are many others with whom I am united by our common affiliation yet I may never meet. Every day I hear about people who have become the newest members of this family, but who may not yet even realize that they are a part of something much larger than themselves and may or may not know that this family is there to support them. I have a love/hate relationship with this family; these are the family of people impacted by Type 1 Diabetes…all 3 million (and growing every day) of them!!!
There are some amazing kids (and parents) in this family whom I have come to know and love over the past 7 years since Jake was diagnosed. There are kids like my sons Jake and Matt, my mom (yup…she’s just a big kid), my sister-in-law Anne, and Cousin Zack, as well as Emily (actually two Emily’s), Chloe, Matt P, Avery, Aidan, Nate (whom I have come to know from all the way in Texas), McKenna, Evie, Ian, Kerri, Brian, Mike and Joe…I could go on and on…but this family tree is just far too big.
Like all families, this one gathers from time to time. We have events like Galas, Walks, Golf Tournaments, Support Groups, committee meetings, and many more family reunions for various important reasons…whether we like it or not!! When my nuclear family meets, we discuss how the kids are doing in school, vacation plans, sports, and politics. It’s usually light hearted and focuses on the wonderful things that we all share.
When my extended family meets, however, we are focused on topics such as which model insulin pump is the best on market, whether or not insurance covers continuous glucose monitors, when the FDA will approve the closed loop artificial pancreas, and our latest experiences in area hospital emergency departments and pediatric intensive care units.
I am reminded of a saying: one can choose his friends, but one cannot choose his family. Well, I hope to prove that adage is wrong and outdated so that I can choose to no longer be a member of this family…that’s why I work tirelessly with the Juvenile Diabetes Research Foundation to help raise the funds needed by the world’s leading researchers to identify better treatments for today, and a cure for my kids tomorrow!! That’s why I am participating in this year’s JDRF Ride to Cure Diabetes in Lake Tahoe on September 11. Click here if you would like to help by making a donation: http://www2.jdrf.org/goto/teamkasper
You see if we raise enough money to fund enough research, we will find that cure for my family.
When that happens we will have another gathering…another family reunion. At that reunion we will celebrate our significant accomplishment. More importantly, at the end of that reunion, an announcement will be made to let everyone know that our family will be disbanding and there will be no more reunions!
We’ll still gather from time to time, but it won’t be the same. We’ll talk about sports, politics, vacations, and kids accomplishments in school. It will be light hearted because none of us will go home to put our kids to bed wondering whether or not they will wake up the next morning.
Our family will be defined as being a group of people united by victory over Type 1 Diabetes!
- Training for a Cure (scottkasperphotography.wordpress.com)
Yesterday marked an important milestone…in exactly 8 weeks, on Sunday September 11, Rachel and I will be riding in the 2011 JDRF Ride to Cure Diabetes. On that day we will pedal the 78 miles around the circumference of Lake Tahoe along with groups of other folks riding for the same cause. My training for this started several weeks ago, and I must say that my physical conditioning has gotten noticeably better along the way.
Yesterday, as a part of my training, I participated in the American Cancer Society Bike-a-thon here in South Jersey. Along with thousands of other riders who were helping to raise money and raise awareness for this important cause, I rode the 50 mile route…I started by myself, but after the first 15 miles I met up with some friends from my neighborhood with whom I ride during the week…that’s when it got really got fun!! We rode the next 30 miles at an average speed of 21 mph!!! I had no idea I could do that…felt like a Tour de France cycling star!!! Being a 40-something year old guy who just got back on a bike, I thought that this was a tremendous accomplishment!
Why is this so important?? Why have we decided to to a bike ride this year?? Jake and Matt must live with Type 1 Diabetes every day, and until we find a cure, I will need to teach them at least two important things. First, they need to stay physically fit. By getting myself off of the couch and back into the saddle, I set a good example for them by making healthy living a priority. Second, and probably more importantly, by accomplishing things that I did not think were possible, I show them that they WILL be able to overcome the challenges put in front of them. Since I started my training rides in May, I have personally logged nearly 500 miles (about the distance from Washington DC to Boston!!!), and I will keep plugging away every day so that ultimately I can climb the mountain passes at Lake Tahoe and successfully complete this personal challenge that seemed a far reach just a few months ago. As that relates to our battle against T1D, we must keep traveling the road toward beating this disease one mile at a time, and eventually we will win the race for the cure!!
To that end, I still need your help! Our fundraising goal is set at $15,000 and we are almost there. Please help me in one of a few ways…first, please click or copy this link ( http://www2.jdrf.org/goto/teamkasper ) and make a donation today!! Every penny counts and we appreciate any contribution no matter how large or small. Second, if you already have made a donation (for which we are very grateful!), please forward this note, share it on your FB wall, tweet it, or email it to your contact list so that others see that you have a friend in need of their help. I think you would be shocked to find out how many of your friends and extended family have some connection to this disease, and they just may be willing to help get us to our goal. Third, come out and help support our team!! The South Jersey JDRF riders who are training this summer for the Ride to Cure Diabetes would love to grow our group. If you are a cyclist, a beginner or a seasoned pro, come out for a training ride with us…just let me know your interested and I’ll make sure we add you to our list.
In exactly two months, Rachel and I will conquer the Tour de Tahoe and hopefully we will be $15,000 closer to conquering Type 1 Diabetes. I know we can accomplish both goals!!
I first met Lori and Tommy on a blustery day in Philadelphia when we did their engagement shots. A few months later and they have tied the knot! Congratulations to this wonderful couple…I wish them a long life together filled with health, happiness, and prosperity!
Here are just a few shots for them to peek at before they leave for their honeymoon!
Last night (Saturday April 9, 2011) was the JDRF Black Tie Gala to raise money to find a cure for Type 1 Diabetes. The of the Gala was “Unfinished Business”, as we will have unfinished business until we find a cure. Here is a picture that I took (it was used as the cover the of program book) of many of our kids who have Type 1 Diabetes with our Gala sponsor Brian Radwell.
I was honored to have been asked to provide the evenings Fund-a-Cure speech (see entire text below). As I spoke the photos that are imbedded below were projected on several large screens and monitors throughout the ball room. Immediately after my speech an auctioneer began asking the room to raise their hands if they can donate a certain amount….he started high ($25,000) and worked his way down to $100…in about 15 minutes we raised over $100,000 through generous donations of the 350 people sitting in the room….AMAZING!!! Below is a copy of my speech. If it moves you…if you feel like you want to help…please feel free to contribute by making a donation to the JDRF Ride for the Cure ( http://www2.jdrf.org/goto/teamkasper) that Rachel and I are doing in September. Our personal goal is to raise $10,000 and I think we can make it with a little help. Thanks so much!!
Good evening. First and foremost, as a dad of two kids with Type 1 Diabetes and a member of the JDRF South Jersey Chapter Board of Directors, I want to thank you all for coming out tonight to help us in our mission to fund the cure for type 1 diabetes. As I look out across the room, I see several hundred of my friends and family all gathered to accomplish the same mission. I use the word family because, as I am sure all of you know, we all can relate to one another and the challenges we face on a daily basis in a way that non D families cannot imagine.
I have always believed that there is a silver lining in every dark cloud, and a reason behind everything that occurs. To that end, I am thrilled to have gotten to know each and every one of the members of this extended family, and have grown relationships with many of the people in this room that I know will last a life-time…that’s the silver lining. On the other hand, I have to be perfectly honest…I am dreadfully sorry that we ever had to meet!
We have all heard the saying that you can choose your friends, but you cannot choose your family. I guess none of us had the choice to join this family. My mission is to prove that saying wrong by working tirelessly to fund the research needed to find a cure for type 1 diabetes so that we can all divorce ourselves from the clan. While I love you all, I just don’t want to be a part of this family any more! I want out…but I do want to be invited to the reunion. I want our outstanding Gala Chairs, the Petcoves and the Mogells, to begin planning a reunion gala so that this family can get together and reminisce about the trials and tribulations of what we used to go through before our kids, mothers, sisters, brothers and all 3 million Americans were cured! I want you to think about how you can help get us there through your generosity and support tonight. I want you to think about how truly important it is to all of us to find the cure!
Since family is my theme this evening, I want to give you a snapshot of the Kasper family…we don’t have a white picket fence or a cat or a dog, but aside from that we are the typical family living the American dream. When our nuclear family gathers we spend time comparing notes about work, we debate politics, and we talk sports. We also compare pump settings, count carbs, brag about our new glucometers, and wake up at 2 o’clock in the morning to check blood sugars. You see when my family gets together we have a group of type 1 diabetics that include 2 young boys, their grandmother, their aunt and their cousin…it really is a family affair.
But what is the impact? How has this shaped our lives? Why is so important to find a cure?
The bottom line is that life with type 1 diabetes, especially for these kids, just plainly stinks. It’s not easy…there’s one challenge after another. For example, whether it’s making a seven year old diabetic or a thirty-seven year old non-diabetic school room mom understand the importance of diet, it’s clearly a challenge. My seven year old will say something as innocent as, “but I only ate a small candy bar” when his blood sugar is 400, or the room mom at school who will say something like “he can eat anything at the party as long as I don’t put sugar on it”, life is a battle of managing normalcy with good diabetes health. Until we find a cure that battle will cause me to wake up every night, as I have for the past 7 years, to check my sons’ blood sugars, or to simply look in and make sure that they are still breathing and not in a hypoglycemic coma.
What about from the kids’ perspective? We are, after all, a family and their input matters? How do we know how they feel about it? One day, I set out to determine just that. First I approached Jake, who was 5 at the time, and asked him to tell me one word that described what it was like for him to live with diabetes.
He quickly and simply said, “Brave!” Having been diagnosed at the age of 13 months, he has essentially known no other way of life, but has been on the receiving end of needles and syringes ever since. He knows he has diabetes. He knows he needs to check his blood sugar. He knows he needs insulin. But at the time he was only 5 and doesn’t truly understand what all that means…he only knows he needs to be brave!
When I got done with Jake, Matt was my next target. He and Ryan (who is my middle son and does not have diabetes) were at the kitchen table. Matt is shy and reserved about expressing his feelings…typical pre-teen!! He was hesitant to engage in this exercise, but I kept pushing. In the mean-time, Ryan interrupted and was told to wait just a minute until I was done with Matt. The discussion ensued…Ryan interrupted several more times, and each time was told to wait with an increasing tone of sternness. Finally Matt said to me “it’s difficult.” I told him I knew it was difficult, but if he could just try to think of a word I would leave him alone.
“no Dad, that’s my word. My life is difficult”…from the mouth of a 10 year old kid!
So I was done focusing on Matt and Jake. I got what I needed. My goal had been reached. I was able to describe in one word and with a photograph, how diabetes had touched the lives of two of my sons. It seems that they are always the focus. At meal time its blood sugar checks and boluses. Family activities are interrupted because of emergency site changes. Plans are altered or cancelled because of ketones and sick day rules…all because of diabetes, and in Ryan’s young mind all because of his brothers….Oh, wait, I almost forgot. What about Ryan? He had wanted to say something while I was focused on Jake and Matt. Finally I gave him his turn. “I wanted to tell you my word,” he said.
“I wanted to tell you that diabetes makes me feel Invisible!”
This is very important to me, and I hope it is to you as well. The fact is that there are 3 million Americans living with type 1 diabetes. If the experience of my family is any indication of the impact of that, it means that there are 7.5 million people living in families with diabetes who are impacted as well. I would never presume to compare the impact of those who live with the diagnosis to that of those who live with the diagnosed, but the reality is that this disease has had a profound effect on all of us, and we all need to find a cure. We need to find a way that when Ryan asks, as he gets ready to go to bed, when it will happen to him that I can say it won’t…we found a cure, we discovered how to prevent, we were successful and we can protect you!
As I am sure you expect, I will end this speech with a plea to open your wallets and pocket books and contribute as much as you can to help fund the cure. Before I do that, however, I want to tell you one more story that illustrates the fact that this disease impacts every aspect of family life.
The kids decided that they wanted to play Sorry. I thought okay, that’s fun enough, and doesn’t last all afternoon the way monopoly does. Rachel was reading a book (if you can still call it a book when all one does is scroll from page to page on the Kindle), I was available, and it’s a game for four players….perfect!! Well, not exactly. One of the things my kids like to do most is NOT put stuff away when they are done playing. As it relates to this story, that means that there are no green Sorry pieces left.
“That’s okay Dad”, Jake said. “I know what we can use!” Off he went toward what we refer to in our home as “The Cabinet,” where we have a veritable pharmacy of diabetes supplies. Within moments he returned with four cone shaped objects, just the right size to substitute as a Sorry game piece. It did not strike me at first, but as I got my first turn I quickly realized that the pieces he had provided were, in fact, packaged needles for the insulin injector pen.
Diabetes has, in large part, impacted every aspect of our lives. About this, Rachel and I are very sorry! We’re sorry that two of our boys have to grow up with the daily complexities of life with diabetes. We’re sorry that my middle son wonders whether he will ever become diabetic, feeling invisible while he wonders. We’re sorry that, perhaps, something we did or something we genetically passed on has caused this to happen…on a daily basis we are sorry!
That day, without even missing a beat and without realizing how NOT normal this is, my six year old resorted to using insulin injection supplies to play a board game … not just any board game … a game of Sorry!
How ironic is that!
Please donate. Please give generously. Please help us raise the funds needed to enable the researchers around the world find a cure so that next year you’ll be invited to that reunion rather than another fund-a-cure Gala and that we’re all not sorry that we didn’t give more sooner!!
- Step up the pace (scottkasperphotography.wordpress.com)
It’s that time of year that I must give a shout out to my peeps!! Here’s the story –
Spring is in the air!! For some, the first sign of the fact that spring has arrived is marked with the return of Daylight Savings Time…you know, that annual ritual during which we push our clocks ahead one hour, change the batteries in our smoke detectors, and spend about a week walking around like zombies trying to recover from that lost hour of sleep. For others, it’s the fact that the daffodils pop up through last season’s mulch and start to add a little bit of bright green and yellow color to the otherwise drab road-sides which are scattered with piles of the fall’s decaying leaves that did not get picked up before winter’s first snowfall.
There are other signs of spring as well. In New England, the sugar maples are bursting with sap. The steam from the roof pipes and sweet smell from the maple sugar houses are a tell tale sign that spring is here. The first Robin that lands on the rail of the back yard deck, the wiggling tad poles in the neighborhood pond, and the swollen buds on the flowering pear trees are all natures tip off that spring is just around the corner!
I love all of those things, and frankly spend all winter waiting to get my camera and get out to document this year’s coming of spring. However, there are two other transformations that happen right around this time of year, one of which is my absolute favorite.
Each year in the earliest part of spring, the supermarket shelves transform into two distinctly separate ethnic sections that cry out with the change of season. On the one set of shelves, the grocer overstocks the boxes of Matzoh, jars of gefilte fish, containers of egg kichels, and a smorgasbord of kosher for Passover staples. As odd as it may seem, I love that!! The fact is that most of this food is just too gross, too plainly nasty to ever eat at any other time of the year. However, I actually look forward to stocking up on my horseradish and gefilte fish. I can’t wait to fry up some matzoh brie for breakfast (click the underlined link if you have no idea what that is!!), complete with cinnamon sugar or strawberry jelly. I long for a heaping bowl of matzoh ball soup with crunchy egg kichels floating on top. I also look forward to the fact that Passover lasts for only eight days and I can go back to eating normal food before terribly long!!
The second set of shelves, as you may now have guessed, contains the brightly colored, highly fattening, and mouth watering foods associated with Easter!! Who wouldn’t look forward to all of the chocolate goodness – regardless of whether its shaped like a bunny or an egg! I mention the Passover stuff first, strictly out of loyalty to my Jewish heritage. However, out of all of this stuff, it’s the peeps that I look forward to the most!!
I’m not sure why this is. Among all of my early childhood memories is the fact that my mom would always buy each of us a small box of the marshmallowy, sugary, gooey, little yellow chicks each year. To this day, my wife will surprise me at some point between now and Easter with my very own box of peeps to enjoy. I savor them…I eat one a day…heads always bitten off first…and make them last as long as possible. I like the yellow ones best. I only eat them at this time of year and when I do I know that, beyond a shadow of a doubt, spring has arrived!!