Tag Archives: family

Ten years ago . . .

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2007

What were you doing ten years ago?

Ten years ago our family was in limbo. We had just been transferred from our local hospital to Columbia Presbyterian Morgan Stanley Children’s hospital in New York City. Our lives were standing still as we waited for doctors to figure out what was going on in Jack’s brain.

Seven days earlier, we had gone for an MRI so that we could rule out any significant neurological issues. We were told immediately following the “routine MRI” that it did not rule out anything. Instead, the MRI had confirmed that Jack had significant damage to his brain.

That was April 20th, 2007.

It would be ten days before we were ushered into a small conference room and introduced to the word Adrenoleukodystrophy. Those ten days were surreal.

Waiting is brutal. Although we tried to be optimistic, the doctors were not able to mask their concern. We knew that a diagnosis was coming and that it likely would be bad news. Jack was only eight-years-old and Dan and I both needed to play the role of calm parents, but in the stillness of night our fears would crawl out. There was very little sleeping for us during that time. The “unknown” causes the imagination to spin, often landing on the horrifying or the absurd.

We all know what happened. That we did get a terrible diagnosis and then lived through a nightmare before finding our way to a new life full of challenges. As we approach the tenth anniversary of Jack’s diagnosis and stem cell transplant (his other birthday), I can’t help but relive those days. I can’t help but remember where we were ten years ago. Who we were ten years ago. Bear with me as I spend the next month remembering and sharing.

Sharing has helped me survive the last ten years and reliving these memories is actually helping me to appreciate that we didn’t just survive that period, but we have moved incredibly far since that time. Of corse, I have my moments wondering what life would have looked like without Adrenoleukodystrophy crashing in, but mostly TODAY I am feeling grateful.

Jack survived. His life is complicated, but his quality of life is wonderful. He is happy and stable and manages to bring joy wherever he goes. Anna survived. She runs through life like she runs down a lacrosse field – determined and strong. I’m not exactly sure where she is headed, but her life is going to be extraordinary. Dan and I survived. We are not living the lives we imagined, but I can honestly say that we are closer now than we’ve ever been. I know it sounds cheesy, but he’s my best friend.

Our family has also managed to surround ourselves with friends who hold us up when we need it and encourage us to celebrate the good times (wine and dessert flow often). And, our extended family is incredible. We’ve just gotten to share time with both the Torreys and the Cappellos and we are all feeling incredibly blessed.

For a VERY unlucky family, we are really f*cking lucky;)

Ten years ago our family was living in limbo. Waiting for news that would forever change our lives. Today we are in control. Perhaps not able to control what tomorrow will bring, but in control over how we will face today — AND today is a great day!!

Love, Jess

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Today (not really today, but this year)

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

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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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Now really matters

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Remember when Facebook was a safe place to scroll through photos of old friends and cute puppy videos? Now I find myself taking a deep breath before sitting down at the computer and diving in.

Apparently, our family has been living in a bubble. A beautiful, diverse, inclusive bubble. A place where all people are accepted and we all believe in science (climate change is a FACT). Where everyone feels safe and neighbors are always there the help or lend some sugar. Where you walk down the street and you are greeted with smiles and hellos. Where teenagers get busted for their parties because they recycle their empties (true story – it’s happened more than once. Teens here risk getting grounded just to be Green). It’s called Maplewood. I’m not saying that our town is perfect, but it’s pretty darn close.

Unfortunately, the last two weeks have made it clear that some people in our country really want to pop our bubble. I’m getting scared.

Building walls, defunding NPR and the National Endowment for the Arts, potential (very conservative) judicial nominees, changes to immigration, Sessions, DeVos. Politics used to be background noise in my life and now it’s center stage — there’s so much information – my brain is spinning!

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It takes a lot to get me to talk about politics. Part of it is that I want everyone to love me and being opinionated can discourage love, but the biggest reason I’ve avoided political talk is because I don’t want to be questioned. I know what I believe, but have always been a little fuzzy on the details necessary to have a chance of winning a debate.

Now that Facebook has gone from being a fun place to a scary civics lesson, I realize that it’s time for this mom to start being informed and prepared to defend her beliefs. Anna and I marched together in New York last weekend. It was a beautiful day and the energy from the crowd was like nothing I’ve ever experienced. Thousands of people marching as one. Marching is a good start, but walking with sweet signs is just the beginning. I have a feeling this is going to be a long road.

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This blog is about our family. Our family is the one thing in the world where I AM an expert. I am not an expert when it comes to politics, but I do know when I feel that my family is at risk – when the country that I treasure is at risk. I have done a lot for my children. I have fought with doctors and insurance companies (even an occasional pharmacist), but fighting for my children can’t stop now. Now really matters.

Love, Jess (the mother of a strong, independent young woman and a teenage boy who has special needs and more “preexisting conditions” than I can count. Oh, and a human that loves the arts, choices, our melting pot and our planet)

It shouldn’t be a secret

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If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying “JACK ONLY” and there’s a lingering smell in the air. We had someone working on the alarm … Continue reading →

GOODBYE 2016!

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I’m pretty sure all of us feel that 2016 hasn’t been quite what we expected. Years rarely live up to their promises, but this year has been particularly tough. So many heartbreaking losses. And, I don’t just mean the folks … Continue reading →