Category Archives: smiles and duct tape

Dear Social Security Administration,

Posted on by

7

images-33

Dear Social Security Administration,

Stop wasting our fu*king time! I’m begging you. I’m coming close to a breakdown and my family needs me. I appreciate that there are people who wish to take advantage of the “system”, but I assure you — we are not one of them. AND, I realize that there are people who might not clearly qualify to receive Social Security benefits. Unfortunately, Jack more than qualifies.

1.) Are you working? No
2.) Is your condition “severe”? Yes. I find this almost insulting to answer.
3.) Is your condition found in the list of disabling conditions? Jack has five of these conditions.
4.) Can you do the work you did previously? Never worked.
5.) Can you do any other type of work? Jack cannot bag groceries, shred paper or walk down the street without someone holding his hand. I’ve often thought he would make a great professional hugger, but I’m not sure that it would pay the bills.

Several months after filing for Social Security benefits, Jack qualified and you sent us a shinny “Award Letter” (that’s really what it’s called – nuts) with his first check. The next week, you sent a letter that it was time to review his case to see if he was still disabled under the disability rules for adults.

I know that there is a need to reevaluate a person’s eligibility every so often, but 10 days after receiving the Award Letter seems ridiculous. I assumed it was a mistake, but after waiting on hold with your offices for over 90 minutes, I was told that I did need to return to your offices to go over Jack’s updated information (updated?). Then, you insisted that I bring my son to attend the meeting where I needed to once again describe his limitations in detail – THAT is cruel. Only made more cruel because we were forced to sit in a waiting room for 5 hours before having that uncomfortable conversation.

At the end of the review, the woman behind the glass (now I understand the need for the glass) said that we would hear within a few weeks if Jack still qualifies for his benefits. In her defense, she did preface this by handing me a tissue and saying, “I am sorry that I need to say this . . . ”

I’m so proud of where our family is ten years after ALD crashed into our lives. We are strong and thriving, but it’s days like this that make me want to crawl into a hole and scream.

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

Is that better? Should I say it just one more time?

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

No Love Here, Jess

P.S. I promise to write again tomorrow and share a bunch of good news and funny stories. We do have a lot to celebrate right now and that should be my focus.

And the Winner is . . .

Posted on by

4

Smack in the middle of remembering the hell we went through ten years ago, we got a beautiful reminder of where we are now.

THIS is where we are now — We are winning the GOLD!!!!!

You are our #1 son!
Aunt Kim is a big fan!
Good friends – fierce competition.
Our HHS trainers.
Jack and his two moms!

IMG_1470

This amazing day was thanks to the Special Olympics and the greatest school on the planet – CPNJ Horizon High School. Their love, support, training and encouragement helped Jack hop his way to the finish-line!!

If this video made you smile (or cry happy tears), please consider making a donation to Jack’s school.

https://cpnj.donorpages.com/WWCHorizonHighSchool2017/JesseTorrey/?t=636288010860612211

Love, Jess (proud mama)

P.S. It’s not really about winning, it’s about being able to play the game. Thanks to the Special Olympics and Horizon High School – Jack was able to play the game!

P.P.S. It is kinda fun to win sometimes;)

Ten years ago . . .

Posted on by

2

IMG_8672

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

IMG_5093-2

Today (not really today, but this year)

Special moms CAN get sick

Posted on by

1

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.

images-64

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

Posted on by

6

images-33

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)

Posted on by

0

IMG_1194

 

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.

img_0421

 

Love, Jess (Pot Mama)

 

IMG_1196

Trying to be Duct Tape

Posted on by

0

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

Screen Shot 2017-03-23 at 8.50.40 AM

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

IMG_0790

IMG_0792

IMG_0793

images-61