Tag Archives: smiles and duct tape

Special moms CAN get sick

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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

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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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The Other “C” Word – Part 2

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“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

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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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Be Kind

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This Friday I’m speaking to a group of fifth graders about kindness. I guess our family has witnessed enough kindness to make us a bit of an authority on the subject.

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I’ve been sitting down trying to figure out how to approach the topic in an age appropriate way. I don’t want to scare the kids, and I definitely don’t want to bore them. Fifth graders can be a tough audience.

I can list some of the wonderful acts of kindness that have been showered on our family — the meals, the gifts, the long hugs, the kind words in the form of letters and texts and emails. BUT I also think I need to share a bit about how to be kind.

There might be a few exceptions, but most people are born kind. Bad behavior directed towards others is either taught or a product of circumstance. Parents need to be careful about what they teach their children. Like all bigotry, ranking people in importance by their abilities is a reflection of that person’s own insecurities. If you need to put someone down just to feel strong, shame on you. Teaching hatred to your children – that’s called bad parenting.

I’m assuming that the crew I’m talking to on Friday comes from good parents that would never intentionally teach hatred. I think I need to focus more on the fact that perhaps these kids haven’t been taught about how to treat people with disabilities. Often mean behavior towards people with disabilities is simply ignorance and/or fear. People don’t know what to do, what to say or where to look.

Here are some simple ideas:

* Stop thinking of people with disabilities as “disabled people”. They are people first. Whatever disabilities they might have are simply a small part of who they are. Look passed their wheelchairs or braces or quirky behavior and approach them as people. Say “hi”. Smile.

* You don’t need to pretend. If someone has trouble walking — open the door for them or ask if you can help. If someone can’t speak — see if you can get them to give you a high five. If someone is in a wheelchair – you can comment on their cool equipment. I can’t speak for all special families, but we would much rather have people approach us with smiles and questions, than to pretend we’re invisible.

* Treat people the way you would like to be treated – always a good idea.

* Be kind/good-natured/caring/loving/warm/sympathetic/hospitable/friendly. It’s good for you. It’s good for the other person and IT’S CONTAGIOUS!

Love, Jess

I think I may start with the Harry Story. Harry taught me a great deal about being kind. I’m also going to introduce the kids to JackO – he is the master at teaching kindness.

 

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 →