I am toucher. I admit it. I will hug you and pat you because its the way I communicate. To touch someone and to be touched is something I take for granted. Not any more. It is one of those things that ALS takes. It takes from both the person with ALS and those that love them. For the Big He, as this beast of a disease works its way in his body, he will become paralyzed. The difference between his paralysis and someone that has had an spinal cord injury and is paralyzed is that the Big He will be able to feel. When he is completely paralyzed, he will feel me lovingly hold his hand. He will feel the comfort of my hands on his face or his arm. He will feel me pat him as a gesture to let him know I am there. He will feel me kiss his lips, hug him and he will feel me beside him. He will always have my touch. He however won’t always be able to touch me. I won’t always feel his touch on me, that touch that is initiated by him. He won’t reach out and grab my hand like he has done for 28 years. He won’t raise my hand to his lips and kiss the back of it.

Last night as I lay awake trying to get my mind to shut down long enough to go to sleep, I started thinking about his touch and how much I will miss it. I know that the time will come when he will no longer be able to reach for my hand so I try and commit to memory how his touch feels. You know, one of the things that popped into my head is how he would come up behind me when I would be cooking and give me a kiss on the cheek or the neck. I remember the way he would just reach for me and give me a big ole “I Love You” hug. That doesn’t happen as much these days. Its hard for him to stand and maintain his balance.

I also thought about the thousands of times we would lay on the couch with our heads at opposite ends of it and intertwine our legs and just be content in touching and being together. I will miss his comforting touch during those times I needed him to pull me close because I was upset or scared. That embrace for me was always exactly what I needed. I will miss his touch and how it made me feel for so many reasons. His touch would convey comfort, happiness, contentment and of course love and the intimate touch you experience with your spouse. Just FYI, that is something that you think about but no one actually talks about but it is an important part of marriage.

Until that time comes and he cannot reach out and touch me, I will cherish his touch. I will commit to memory what it is like for him to grab my hand, to pull me close for a hug or kiss. And when it passes, I will continue to cherish his touch through my embrace of him.

To my family and friends. Don’t shrug off the hand that is offered, the hug that is being initiated by your loved one. There may come a time when you will only have your memories. Cherish what you have now.

All my love,

The She

The Big He’s update: He started and finished the first round of the new drug Edarvone. No side effects. We are prayerful that his progression slows because in the last few weeks has experienced some progression. His voice continues to weaken and he slurs a bit more. His left foot is starting to weaken and his legs tire really fast these days. Tripping and falling are what we watch for these days along with choking. When we run errands he uses his wheelchair as it saves his energy. He occupies his days with Drew Carey and the Price is Right and training Lou the mobility dog. He is Mr. Mom and gets onto the Little He to do homework afterschool. The Big He is as good as someone living an ALS life can be.