Monthly Archives: March 2017

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

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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)

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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.

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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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