Special moms CAN get sick

Last week was tough. It involved long needles and lots of waiting.

I went for my annual mammogram. It was followed by a lengthy sonogram and then a unnerving talk with the radiologist. Two days later, I returned to the hospital for a needle biopsy.

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As I was lying on the table having trouble breathing through the pain, Dan sent me a text from the waiting room – You are strong. You are brave. You are fierce. So sweet, but at that moment I felt anything but those things. I was crying even before the doctor started the procedure, wondering how on earth I would deal if I really was sick. A cold is tough for me. Anything that eats up time and saps my energy, takes me away from my responsibilities.

Special moms can’t get sick.

Like most women, I go to my annual mammogram with a tiny bit of worry, but mostly it’s just a nuisance and a pain (literally – no one likes their breasts to be flat as pancakes). Last week’s mammogram results hit me like a brick, reminding me that life can change quickly and nature can be a bitch. She doesn’t care how much you have on your plate. She doesn’t care if you are terrified of needles/pain/blood. She doesn’t care if your family has already spent too much time in hospitals. She doesn’t care if your husband has already lost his mother to the disease or that your friends have already done their share of suffering from illness.

Bad things happen to good people. Life isn’t fair. Not everything happens for a reason. AND special moms CAN get sick.

After several days of feeling sorry for myself and trying to picture myself bald (not a pleasant image), I got the call that my biopsy was negative. No cancer. I do need a MRI that I still don’t really understand, but my doctor isn’t concerned. My boobs (and hair) are here to stay.

We are all breathing a sigh of relief, but it has gotten me thinking about my health. I don’t take perfect care of myself. Sure — I do my share of 10,000 step days and eat plenty of green things, BUT I drink more than I should, I eat meat and dairy and gluten (I love gluten). I pay monthly for a gym I never go into and I’ve never even signed up for a 5/10/20 K run.

I have always tried to balance healthy choices with fun. Figuring that life is short and complicated and should be enjoyed when possible. I always find any excuse for the extra glass of wine or slice of cake. Last week scared me. I’m starting to think that as I approach the big 5-0, I need to focus more on the long road and being there for my family.

Special moms can get sick and nature can be a bitch — I really don’t want to add to the odds.

Love, Jess – (written while enjoying some green tea and kale)

P.S. To all of my friends and family that have fought breast cancer. YOU are my heroes! That one little biopsy nearly sent me over the edge (honestly, I nearly passed out when I saw the length of the needle).

Five Stages of a Day at Social Security

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I spent Wednesday at the Social Security office in Newark, NJ. It was an emotional day.

Denial

As I walked into the large waiting room, I was surprised that it was so crowded. How could every seat be filled on a Wednesday in the middle of the month? Deep breath. This is going to be fine. Today will be the last time I need to come to this office. I have everything they might need right here in my green Whole Foods bag filled with paper.

Ninety minutes later, I hear my number, I grab my green Whole Foods bag and race up to the counter. I give Jack’s social security number and the woman behind the counter starts typing frantically on her keyboard. Five minutes later she looks up, “I’m sorry Mrs. Torrey. It looks like you need to speak with Ms. @#$%. I can make you an appointment for next week.”

Anger

“Are you kidding me? I’ve been here for ninety minutes already and I called Ms. @#$% 17 times in the last two weeks. 17 TIMES! She has not returned one of those phone calls. THAT IS WHY I AM HERE! I can’t come back next week. I need to see someone NOW!”

I’m not sure if it was my strong words or my teary eyes that got to her, but suddenly the woman behind the counter told me to wait, went back to her keyboard, typed in some magic, and then directed me to another desk. I was introduced to the allusive Ms. @#$%.

Hopeful/Bargaining

I took a deep breath and put on the sweetest smile I could muster, “Thank you so much for seeing me Ms. @#$%. I’m sorry that I have been calling so much, it’s just that we are anxious to get this done. I promise I have ANYTHING you might need here in this bag.”

As I held up the green Whole Foods bag, she started shaking her head. “I just don’t think we can get this done quickly. I need a little more information from you and to have our lawyers look at your son’s case again. I will get back to you next week.”

Depression

Tears are now rolling down my face and I set down my green bag, “Next week? You can’t understand how complicated our lives are. My son turned eighteen last summer. We’ve been working on this for eight months. He should be worried about getting accepted into college this year – not whether he qualifies of SSI.”

The word “college” really got me going and I sat down with my head in my hands, “My son qualities for Social Security. He’s disabled. YOU know that he is! We’ve shown medical records and you have his school information. He will never work a day in his life. It’s not that he doesn’t want to – he can’t. HE can’t do anything on his own. We have given you all our his information. We have followed all the rules. We have filled out all of the paperwork you asked for. How on earth do you not have an answer?”

Ms. @#$% sat looking up at me and didn’t seem to know what to say. She turned around and I was worried she was going to call security, but instead she came back with a box of tissues, “Mrs. Torrey I’m going to get started on this right now. Just let me see your guardianship papers and the other account information we discussed. We are going to find out as soon as we can how to proceed. What is your cell number? I will call you as soon as I hear anything.”

I was shocked. Not prepared for her to be so helpful. I opened my green Whole Foods bag, pulled out the paperwork she asked for and said “Thank you.” There was nothing more for me to say. This is our life. It’s filled with paperwork, disappointments and reminders of what could have/should have been.

Without another word, I stood up, grabbed my green Whole Foods bag and turned around to walk away. I cried the whole way home and then went into the house and cried some more. I called Dan and cried. Then I called Mymom and cried. Once all the tears were done, I took a warm shower and started my day again.

I needed to pick up Jack early so that we could go watch Anna play lacrosse. As Jack and I made our way to the field arm in arm, I realized my mood had completely turned around. Our life is not just filled with paperwork and disappointments – it’s also filled with sunny days, fun games and magical hugs. THAT should be our focus.

Acceptance

Love, Jess

UPDATE: Ms. @#$% called yesterday at 4:59 pm. Jack has been approved for Social Security. Before I hung up the phone the tears started flowing again. She must think I am nuts.

Medication or Menace? (the answer for us is clear)

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Another week, another article – this time in the Columbian (The Columbia High School Newspaper – our district supports the Torreys)!

When I was approached by a student at Columbia High School to be interviewed for an article about medical marijuana, I did pause to make sure my family was on board. I have shared it here before, but The Columbian is a different audience. Anna is a junior at Columbia and I didn’t want her to feel uncomfortable with me sharing our story with her classmates. She had two comments, “You share EVERYTHING with EVERYONE – I’m used to it. And, why would I care about people knowing Jack uses medical marijuana? It’s medicine.”

As always – Anna’s right. I do share a lot. I share to help me process what’s going on in our lives. I share to help other special families see that life does not need to be defined by disabilities. I share so “non-special” (is that a thing?) families can see that us special folks aren’t really that different. AND I share to spread the word about what works and what doesn’t.

Medical Marijuana has worked for Jack. It helps him focus and relax and eat Cheetos while watching bad TV – I’m kidding about that last one. That’s one of the problems – marijuana/mary jane/pot/weed/ganga/herb/cannabis – whatever you call it, it has a bad reputation. Many people categorize marijuana as simply a recreational drug and discount all of it’s medical benefits. People have their image of “refer madness” and have trouble wrapping their brains around the fact that it is a far superior and less dangerous drug than many medications that live in most medicine cabinets.

I expected some judgement from older generations about using marijuana for medicinal reasons, but I was startled to see that even high school kids seem to have a hard time excepting medical marijuana as a real medication. 54% of Columbia High School students interviewed for this article did not think it should be allowed to to treat illness on school grounds. I find that shocking. I do hope this article helps to educate and open people’s mind to new alternatives for treating people with nerve pain, spasticity, MS, cancer, seizures, glaucoma, etc.

Clearly it’s time for marjiana to find a good public relations team. Jack would be happy to be a spokesperson.

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Love, Jess (Pot Mama)

 

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Trying to be Duct Tape

Look what Anna stumbled upon while on our School District’s website:

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In case you missed it – check this out!

 

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

 

Love, Jess

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I’m a Weathermom

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We were predicted to get 18- 24 inches of snow and winds of over 50 mph yesterday. We ended up with about 9 inches and the winds never turned into much. As the storm wound down, people started questioning the meteorologists and complaining. I always find myself on the opposite side of that argument. I feel sorry for anyone who is trying there best, with the information they are provided, to make a call.

Perhaps it’s because I feel like a weatherman (mom) myself. I do the best I can with the information I am given, AND I don’t want people to judge me.

Taking care of Jack is like trying to predict a winter storm. You know when all the elements are setting themselves up for something, but you never really know what’s going to happen until it’s arrived. All you can do is prepare for the worst-case-scenario and cross your fingers. Sometimes you end up looking like you’ve overreacted.

Sunday morning Jack woke up running slow. After a super fun night celebrating a friend’s 50th birthday and a Madmen party raising money for our school district, Dan and I also woke up running a little slow. We ate breakfast without our usual lively morning routine. Jack seemed rather sullen and Dan and I noticed that Jack was not swallowing any of his food. We did all our usual checks to see if there was anything in our forecast – temperature, throat check, press belly. Everything looked okay, but we did give our boy some extra hydration and set him up under blankets in front of his favorite show. Not laughing to his Impractical Jokers should have heightened my concern, but I was a little distracted by my throbbing headache, so I just continued on with my day.

Luckily we didn’t have much on our plate so we were able to hunker down. We kept an extra eye on Jack and his mood. There was one hint that something was brewing when a diaper change lead to a double shower, but we were hoping it was an isolated squall.

I finally motivated and went on my daily walk around 5 pm. I was busy listening to my podcast (Missing Richard Simmons – so good) when Dan called, “Get home quick. Jack needs to go to the hospital.”

Two dogs, ill-fitting boots and a mom on a mission, I ran back to the house. Jack had thrown up all over the den and was shaking. His color was off and his eyes were bloodshot. It looked like a category 5 storm was going to hit. Within a few minutes, we were packed and loaded for the hospital.

As soon as we walk into the ER, Dan and I both turned into crazy people. When we see a storm brewing in our boy, we need everyone to stop what they are doing and focus. “Jack has Adrenoleukodystrophy, Addison’s Disease and Epilepsy. He needs 50 mg of hydrocortisone and IV fluids NOW! If a seizure starts, we’re in trouble!”

When they didn’t find us a room within ten minutes, I sent Dan in. I am not sure what he said but we were ushered into a room within seconds. Again, we started screaming at anyone who walked into the room, “What’s taking so long? We need an IV placed now!”

Long story short – It didn’t get that bad. Jack did get his IV hydration and his 50 mg of Hydrocortisone. His color came back quickly and he even managed to flirt with a nurse or two. There was no seizure. Jack came home with us three hours later, feeling a great deal better. All the nurses and doctors seemed happy to get us out of there and I’m pretty sure I saw them rolling their eyes at us as we quietly thanked them and walked out the hospital doors.

So yes, we looked like crazy, paranoid parents. But sometimes you can’t risk not sounding the alarm and putting up the storm windows.

Love, Jess
P.S. Jack is still sporting a snotty cold, but his spirits are back and he is enjoying his snow days!

Back and Better than Before (for a little while anyway)

One benefit of having a crisis is that you really appreciate life when it’s over.
We may never know what caused my strange case of Parotitis (it actually has a name), but it’s finally gone. Not before it invited a few friends in the form of a rash which covered my chest, neck and started crawling up my face AND then there was the super fun swelling around my eyes. I went to Urgent Care two times and an ENT once and no one seemed entirely clear about why it was happening, but some steroids, antibiotics and a wonderful assortment of Young Living essential oils and I seem to be on the mend. I woke up yesterday morning and was not startled by what was looking back at me in the mirror. Yippee!!

I spent yesterday exercising, tackling the large pile of paper on my desk and buying almost $300 on health food at the grocery store. I’ve also been in the greatest mood.I think that Parotitis has actually given me the kick in the ass I might have needed to get back on track. There is something about feeling lousy that makes you really appreciate feeling good.

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The King of Appreciating Life

Of corse JackO is the King of appreciating life. No one I’ve ever known embraces life with his gusto. He wakes up happy and lives with his magical smile whether I am feeding him Able Baker cupcakes or cutting his nails. He’s not a huge fan of getting shaved or putting on his leg braces, but even then, he recovers quickly and pops right back into Jack mode. Perhaps he has collected every bit of his bad days and is now getting a chance to just enjoy the rest. I love you Jack and I am right along side you this week. At least until the car breaks down or I need to deal with Social Security again or Finn starts barking.

Love, Jess

I wrote this last night and woke up having lost the feeling. I guess steroids do affect sleep. And when I did manage to get back to sleep, I had a strange dream where I was hanging out with the cast of Vanderpump Rules and I lost my keys while walking across a very high bridge (it was Adriana’s fault). I need some Jack hugs to get back in gear!!!!

Welcome Home.

I walked into my house Tuesday night and was greeted by Anna with a warm hug and dogs licking my face. Then I ran upstairs to see if Jack was still awake. The smile on his face lit up his room. Going away is great, but coming home is even better. Usually.

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Three days in Mexico with good friends and the warm sun, and I was relaxed and happy. It wasn’t until the morning that reality set in. Big time.

Dan is in Asia on business, so I arrived home to being a single parent this week. No worries – I was just in sunny Mexico – how can I complain? I was a little tired from vacationing, but nine hours of sleep and I woke up in the morning recharged and ready to get stuff done. I had my list of to-dos, breakfast for the kids organized and I walked upstairs to start our morning routine. I opened the door to Jack’s room and the first wave of reality hit me. Poop.

It wasn’t Jack. It was poor Keegan that had covered the floor with liquid gifts. Unfortunately, I didn’t have enough hands or minutes to add dog-clean-up-duty to my morning, so I quickly grabbed my boy, shut the door and continued with our routine  – shower, teeth, yell at Anna to get downstairs, clothes, medicine, breakfast, hydration, leg braces.

I kept Keegan close to us as we went through the morning motions and he seemed happy and comfortable. My Mexican attitude kept me calm. I managed to get the kids out the door and by 9:00 am I had cleaned up the poop, mopped the floor, and had started the laundry. I was ready to start fresh. No problema.

I made a healthy breakfast and sat down. It wasn’t until I had the first bite of my toast that I realized there was something wrong with me. Did I hurt my mouth? It didn’t feel right. Then I put my hand to my jaw and felt that it was swollen. I ran to the bathroom mirror and saw that my cheek and jaw was so swollen that I couldn’t see the ear on my right side. And it was growing.

I was forced to throw my entire day aside and raced to Urgent Care.

Apparently your salivary gland duct can actually get blocked. Often times it’s connected to an infection, but not in my case  (I’m just lucky).  It looks like the mumps, but only one side is affected so it’s extra startling to look at me. And, the pressure on my teeth, my ear and my head are intense. I go to another doctor today to find out when/if/how to treat this. Until then I will try to remember the sun on my shoulders and stay away from the mirror. Tan chipmunk is my current look.

 

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Monday

 

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Wednesday

I am trying really hard to keep a good attitude, but if one more thing gets added to my plate or my face, I may have a full blown nervous breakdown.

Love, Jess

P.S. Keegan seems much better. He did have one more episode, but has been good now for about 20 hours – although he is currently mad at me for only feeding him rice for his last two meals.

HAPPY BIRTHDAY DANO (AKA FATHER OF THE YEAR/GREATEST HUSBAND ON THE PLANET)! PLEASE HURRY HOME. WE NEED YOU!!!!!!!!

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The Other “C” Word – Part 2

“Come on JackO! We need to keep up!”

I am not sure how many times I said those words, but it felt like thousands. I really didn’t want to miss a minute of the tours. Jack did managed to keep up pretty well – he hopped his way through three campuses over the weekend.

We spent the weekend in Boston looking at colleges. I’ve been dreading the “C” word for years and now we are here – smack in the middle of it. The clock is ticking so loudly that our family is having trouble focusing on much else.

Let me start by saying that we are thrilled for Anna. She has worked hard to be able to walk through college campuses with confidence. It’s not just top grades in top classes, but she runs clubs, has organized camps, has had an incredible internship, and is athlete too. She lives her life wasting very little time with nonsense. I’m sure she will have many wonderful options. And, she will (even if it kills me) have a family that supports her every step – or hop – of the way.

BUT

This new stage has been hard for me and it came out sporadically all weekend. The “C” word is bitter or sweet depending on what second you catch me. Just ask my family. This weekend I would go from cracking jokes, asking lengthy questions to the college guides and demanding selfies — to hiding in the bathroom and yelling things like, “I will take my own Uber home!”.

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My skin is just really thin these days. I am trying so hard to make it fun for Anna. It should be. It’s an exciting time and she has worked tirelessly to make this next step in life. And, college is amazing – the classes, the clubs, the parties! How can I not be excited for her to go?

… FOR HER TO GO

To leave us here without her daily dose of humor. To leave us here without her long stories of teenage angst. Who is going to steal my clothes and call bullshit on me trying to serve leftovers for three days in a row? It’s going to be so quiet here on Clinton Avenue. I imagine I am not alone. I bet all parents have their hearts break a little when they imagine their birdies flying. Change is never easy.

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And then we have an added heartbreak. The other side. The child who cannot fly. Jack who will not be going off to college. I try not to focus on the on this too much, but there are reminders everywhere we turn.

We were literally surrounded by college-bound faces all weekend. Kids that are Jack’s peers. Kids with the same mischievous smiles. The same stubbly faces. At first glance, they all look the same as our boy, but the are not the same. They didn’t have Adrenoleukodystrophy storm into their lives (and brains) as a child.

Even at home, we are being reminded. All of Jack’s childhood friends are either already in college or are anxiously waiting to hear where they’ll be heading. It breaks me when I think of what Adreoleukodystrophy stole from Jack.

ENOUGH

I need to focus on all of adventures that lie ahead for Anna. It’s going to be amazing and lead her further towards her goals. She will get closer to medical school or a PHD in something I will never understand. She will meet new people, travel, have incredible experiences and tons of fun.

I ‘m going to toughen up and be okay with all of this change. By the time we go for our next college tour in North Carolina, I am going to be carrying a strong, bright smile and leave the tissues behind . . . but if I can’t — I apologize in advance.

Love, Jess

Jack doesn’t seem upset in the slightest. He loves any chance of exploring with his family. Jack just hops through his life with a smile.

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Michael and Hans (I mean, Pierre) Part 3

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Eight years ago our family hosted a party to celebrate Jack’s second transplant birthday. There was a cake and balloons and (like any good party) a table so that people could sign up for the Bone Marrow Registry. 79 people signed up that day. One was a friend of a friend, Michael Steiner. I’ve shared his story before, but it continues — here’s the update:

So I did the marrow (“Drill baby! Drill!”) donation back in September 2015. Then a few months after that I did the white blood cell donation (“Spin baby! Spin!”) for my cousin, … because we’re all cousins. #ScienceIsReal

I knew he was in Europe, but I guessed he was in Germany (biggest country, my dad is ethnically German… so odds were on Deutschland over all others.). But it turns out Hans, is not Hans; he’s Pierre. Yes, he’s in France. I was thinking I would call him Francois, but I can never be sure to spell that with i-o or o-i. Oy!

Anyway, I found out the France part because Be The Match called me again in December 2016 to do another white blood cell donation, but this time a nurse would jack me up with some filgrastim over 5 days before the “harvest”. The filgrastim would make my body over-produce the white blood cells so the machine can spin out a better dose for Pierre.

The procedure was set for February 1st (aka “February Fools’ Day”).

I didn’t have many side-effects from the filgrastim. Only some sleeplessness and a low fever because the body gets confused with all those white blood cells around. “What’s the matter? What’s with all the white blood cells? Are we sick? What the heck?” HA! I got to stay in a hotel in the city the night before the harvest because my appointment with the needles was at 7:30am.

Since white blood cells only last a few days, Pierre got the “booster pack” within 24 hours of the harvest. I thought that was pretty cool.

Unfortunately, I’m very unlikely to be able to help Pierre again, at least with regards to his Leukemia. My handler at Be The Match told me I’m “getting to old for this s**t.” (Roger Murtaugh – Lethal Weapon). But seriously, I can be in great shape, but I’m already 45, and my cells aren’t going to be helpful to Pierre after a certain age. (I imagine the bag of white blood cells arriving in France and them saying “Ça sent un vieil homme.” Don’t you love how “old” in French looks like “vile”?)

I probably won’t get an update on how Pierre is doing, and I don’t need one. I hope he hangs in there for a long time, but I know how it all ends!

A big merci beaucoup to Jesse Cappello Torrey who had that “swab party” those years ago.

Merci to you Michael!!!!

Love, Jess

Thanks for including me JackO

I was shaking when Dan, Jack and I arrived at Jefferson School this morning. I’ve been a teacher most of my adult life, but that doesn’t mean I’m a natural at public speaking. Standing in front of twenty students and a pile art supplies is WAY different then standing in front of over a hundred people with nothing but some notes and a copy of Smiles and Duct Tape to protect me.

I’ve now had a few opportunities to speak in front of audiences. I keep thinking it will get easier, but I still feel the adrenaline racing threw my blood and every bit of my body trembling. I wonder if that ever goes away . . .

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Luckily, this audience was kind.

There were a few familiar faces in the crowd, and I could see Jack and Dan sitting in the back of the library. Their smiles always give me strength. So, once the kids arrived and settled themselves in their seats, I dove in and the talk seemed to go well.

When I was approached about talking to this group of fifth graders, I wondered what I would talk about. February is “Kindness” month at Jefferson. I am pretty nice (unless you bring out the Scorpio in me), but any expertise I have in kindness has been earned because of the kindness that our family has witnessed over the years.

Today I talked a little about what our family has gone through and all the wonderful ways people showered us with kindness. I discussed how people can be kind and how kindness is contagious. I even shared a passage from Smiles and Duct Tape. I’m proud to announce that I maintained the attention of a room full of fifth graders for almost an hour – FIFTH graders!

Once it was time for Q&A, I was shocked by how many thoughtful questions were posed about our family, about ALD, and about Jack. Everyone seemed very interested — did I mention they were fifth graders!?! It was a remarkable group.

We ended the presentation by introducing Jack and he showed-off by presenting everyone his favorite (and only) sign – LOVE. Honestly, I’m pretty sure that alone would have made the day a success;)

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Jack then gave each person a high-five as they left the room. I did most of the talking today, but Jack is the real teacher when it comes to kindness. I’m just lucky that Jack includes me in his speaking engagements.

Love, Jack

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