Glances and Dances

Hi Again! 

As some of you may know, we just completed the set up of Derek’s Vision for a “Dance It Out Challenge!” 

This entry was written while Derek was in the hospital and I was trying to find the strength to somehow make his vision a reality!

Check out Derek’s vision of a “Dance Challenge for ALS” at:

Facebook: @“The Dance It Out Challenge.”

Thank you for following our journey.

We have many moments in our home that involve longing stares. We all seem to be doing it a lot lately. Glancing at one another while no one is looking. Caught up in the beauty that fills our home. Stopped in our tracks admiring each other with wonder.

Derek is only 45. Daily this thought slips through my fingers as I watch his body change every single day. We all see you Derek. 

I remember when I first meet Derek 16 years ago. We spent hours talking about life and legacy, visualizing the parts of life that feel good. I knew he was special, but I always thought that he would have more time to create his legacy. I always thought that when I turned around from creating mine, that he would be there smiling.

Today, Derek is reliant on support from machines. Tubes and the loving and attentive care of home care aids is what allows him to be. I can no longer move him at all. It’s near impossible to embrace him because it hurts his thin body. 

When the heavy hits, we stare. Stopped and watching each other.  “Let’s Dance,” he says. It’s the one thing left that we still know how to do. But inside my heart sinks. I am so sad watching him fade.

I tell Derek that he’s a warrior. His visions are now my mission. And my goal is to make sure that I feel his passion. 

We all know that life is short and that we never know what is lying just around the bend. Our young children watch this.  Their big bright eyes begin to glaze over the details of living with this unforgivable disease. I see freedom in their young souls, and confinement in Derek’s. I see vibrant, longing life in the kids, and shy peace in Derek’s. 

I am just here sometimes. Fighting to support both the bright and dim that lives in my home. I just offer myself.

Today is a note to say thank you to all who have offered themselves to Derek and the kids. And  to me.

May your day rise up strong to meet you. And we hope to dance with you!

May 2019 Update

It has been a while since any updates. With all the details surrounding us each day, I have been finding it hard to write. For the first time in my life, writing brought no peace. But something has changed over the last month and we thank you for sticking around. 

This entry will be purely an update on how Derek is doing and why we needed to sink our toes back into the earth and fall off the radar for a few months. 

Since our last update, which was about 5-6 months ago, Derek has changed quite a bit. Each day that passes we see change. Some are small changes and only require equipment or minor adjustments around the house. But some are so large that the kids and I are forced to a full halt of moving forward and his need requires full attention.

One of the largest changes found Derek and the rest of the family on Easter. 

Derek was having an amazing morning with the kids and me. We woke to Easter fun at home with Harper and Arlen. Derek was in an amazing mood, laughing and fully engaged in the details of being a dad on a holiday with two little kids. 

Later that day we were leaving my parents house to head out for Easter dinner. In a moment of Derek feeling carefree he decided to desend down a ramp without any guidance or use of his seatbelt. He was propelled from his wheelchair and landed face down on the pavement below.

ALS is a horrible disease, and falls are one of the most common and greatest risks. People suffering from ALS have to constantly be thinking about every single move and motion they make, or they can get hurt. For Derek, he says that it didn't even cross his mind that it would be dangerous. He just went right to the ramp like you or I would walk out of our front door, not thinking about a single thing. Auto-pilot if you will.

ALS also presents limitation with rigidity on the body. Meaning that Derek has no ability to break his own fall with his hands or elbows like we do. So when he fell, he landed directly on his beautiful face.

Derek was rushed to the emergency room where they worked frantically to rule out brain damage, blindness, paralysis and full independent respiratory function. 

I just climbed into the bed with him. I promised him that he would be ok. He didn't even know I was there. But it was all I had to give him- my promise.

Derek broke multiple bones his face and stayed at Mass General Hospital for 9 days as he miraculously healed. One thing at a time, we made our way through the whole list of possible medical obstacles that were presented to me in the emergency room.Derek is home now, but he is different. He can barely speak now and can no longer eat on his own. He had a feeding tube administered during his hospital stay. We were also instructed that he would need 24 hour medical care at home. Over the past weeks, since Derek has been home we have been adjusting to this new version of home. 

We all feel blessed to have found Asuman, who is Derek’s home care aid.  He is not only kind and brilliant, but he also loves Derek, and Derek loves him. Talk about big blessings! Thank You Asuman.

Since the sunshine has found New England, we have all been outside constantly. Derek rolls out into the yard and watches the kids and I dance in the driveway. (I think that neighbors think were crazy.) Or, he watches Asuman or I play basketball or soccer with the kids. We laugh a lot, but mostly we all just watch each be.

So blessed that Derek healed. So grateful for Asuman joining our family. So honored to have Harper and Arlen as my greatest teachers. 

Thank you all for following along our journey!!!

To the Business of it...

Hi Everyone,

Thank you for checking back into It’s Sarahjean here…

I wanted to begin by explaining that the tone of this entry may feel more mechanical and matter-of-fact than previous posts. Derek and I decided that in order to fully fill you in, we need to be business with this update. So bear with me… this kind of writing is a challenge for me.

Derek and I made a video last week to post, and it turned out to be rather hilarious to record. We had a few technical issues and spent most of the video with bees buzzing around us, Derek laughing and me squinting from the Sunshine. (Yup, we took that video outside). But the days flew by at mock 20 speed, and we did not get it online with enough time for the importance of yesterday -- 10/17.

10/17-- Yes… Let me explain.

The first really important thing that has happened since our last update is that Derek was accepted into the “Brainstorm” Trial. I think we mentioned this when we made our last video. The details of this trial are complicated, but also really incredible. It is stem-cell based and very intensive. Yesterday, Derek spent the day at Mass General Hospital in Boston. He received a bilateral bone aspiration in both hips. 5 weeks from now, the fluid will return to Mass General and Derek will receive a stem-cell transplant- Hopefully!

This particular trial has a 50/50 placebo ratio. So Derek has a 50% chance of receiving his own stem-cells during the transplant, and a 50% chance of receiving saline. Fingers crossed he receives the stem-cells! Send good vibes…

In addition to the trial at MGH and all its details, Derek’s physical changes have been significant. Let me fold back to the video attempt from last week again…

As we made the video, we had an immediate challenge. Derek’s respiratory function has decreased significantly since our last video, and he is now struggling to speak, eat, and sleep through the night. When we tried to record, his speaking voice for the video it became a challenge and we quickly learned that we may need to try other means for future updates. Because of his respiratory change, he has been put on a ventilator. At this point, it is suggested that he focus on using it only during the day until he gets comfortable enough to sleep with the machine.

So far so good! His cheeks are pink and he’s acting more like his silly old self.

In addition to this being a very big week for Derek with being hospitalized and starting the trail, he has also started receiving home care services. The care is incredible and will ultimately sustain Derek’s independence and even more so his safety for the time being.

We feel blessed to have meet you, Hadson and Grace! Thank you so much for your help!

Moving on- Derek and I wanted to send out some deep Thank You’s.

First, to all of you for your continued support on the GoFundMe page. Every dollar of these donations are being put to work. The equipment and home care costs are extreme. And we deeply thank you for your support.

Specifically, we would like to thank One Anonymous Donor for offering to make a recurring donation specifically for Derek’s Home Care costs. We are not sure who you are… But we thank you from the bottom of our hearts. We appreciate that you know how intense this cost is and that you have offered your kindness in this way. Your donation helps take the edge off of how expensive Home Care services are. One of these days - we hope to know who you are - So we can thank you Face-to-Face. Yes yes!!

Our Thank you’s need to continue right to Lauren Peterson and Keri Walsh. Thank you for putting together the incredible fundraiser for Derek back on August 12th. Lauren and Keri are two of the most genuine and caring women we know. They took this fundraiser head on and quickly added in two more incredible women to help pull off the day with so much love. Thank you Francesca Gove and Sandy Littlefield!

You 4 are just incredible. Thank You so much to everyone who had a hand in all the details to make that day so incredible. George Peterson, thank you for your amazing speech!!! Also to everyone who came out that day and to those who contributed to the silent auction that afternoon. What a turn out!! The day will forever be precious to Derek and me. The love and feeling of support was intoxicating and took Derek and me for an emotional ride of Joy for weeks.

The week before that fundraiser, Derek’s employer, Zoll Medical, held an Ice Bucket Challenge on their main campus in Chelmsford Mass. What an amazing day! Our two little ones, Harper and Arlen, joined us for this benefit and it was a blast! Lots of buckets, ice, getting soaked and watching Derek laugh… and to boot they even had an ice cream truck. But the most wonderful thing about that day was the amount of awareness that was raised within the Zoll community. We wanted to send an extra special Thank you to Peter Dezac, Paul Diaz, Darlene Coutu and Jim Crotier…. Thank You!

There is so much more that we need to fill you all in on… But I think that is enough for today. We will be back soon and perhaps then we will be able to avoid the bees and technical issues and we can get Main Man D on screen so you guys can all see his smile!

Peace and Love, Sj

This Guy

Lets get to know this guy right here a bit better.

Derek, my goodness there is a lot to say about him.

When I met Derek over 15 years ago it was a game changer. For a lot of us our 20’s were filled with crazy stories and late nights. Mine was no different.

Then one evening over some strategic planning of my now sister-in-law, I meet this unique, strong man and I stopped in my tracks.

I remember being impressed by Dereks endurance.