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!!!