Bonus year 2019

Today, we mark one year since the Big He had his trach placed. In a month we mark 4 years living an ALS life. Had the Big He not chose to trach, the Little He and I would be approaching a different anniversary. The memories of watching him struggle to breathe and how weak and helpless he looked laying in that bed will forever be etched into my memory. The fear that I felt as I watched him was incredible. Night after night wondering if I would be leaving the hospital a widow. Overwhelmed with how I would tell the Little He. I am not sure how many people truly knew how I was barely holding on. I gave a brave face to the Big He and Little He and those around me, but at night when the ICU was as quiet as it could be with all the equipment and alarms, I would pray for comfort. I would pray for strength to hold it together one more day and I would pray for my husband.

His decision to trach was made because he was not ready to die. His decision to trach was because he loved us that much. His decision to trach has not been easy. The recovery from pneumonia was very, very hard. He experienced greater paralysis as a result of the insult to his body. Not gonna lie, this has been an incredibly hard year for our whole family. I can tell you that this year has also shown the Little He and I how much we are loved by the Big He. Not only has he fought hard physically to recover from the pneumonia he has fought mentally as well. He walked (figuratively of course) a very dark path for many months. Are those days behind us? Probably not, I mean with a terminal disease, with paralysis and with the need for life support there are a lot of dark days. The difference between now and then is that the Big He can see that there are bright days too. If we can focus on those days, I think we are doing pretty good.

He spends the majority of his time in bed, but I am hopeful that as we push into Bonus Year 2020, we will see more outings and making more memories. This past year has not been all of losses for him. He has gained 30 pounds, he started standing in a standing frame, he started coming off his ventilator for short times, and recently he has started to sit on the side of the bed and use his own muscles to hold him self steady. He has even begun to move forward and backward and side to side. Not bad for a guy that was supposed to be paralyzed. We will take every win we can get.

Photo by Christian Fridell on Pexels.com

I hope you now see why this is our Bonus Year and I pray we have many more to come. If you are out and about this weekend or even staying home, raise a glass and celebrate our bonus year. Post your pictures and tag our Tom’s Troops Facebook or Twitter accounts and use the hashtag #bonusyear2019 so the Big He can see his Troops celebrating with him.

All my love,

The She

Paralyzed. Trached. Now what?

Most everyone knows by now that the first part of 2019 SUCKED for our family. The Big He had a cold in January which started us off to a really crappy new year. All said and done over 40 days spent in ICU.

The insult to his body after all of this was an increase in the progression of this cruel disease. Where prior to the cold he could stand and transfer on his own, he no longer can. He was able to use his left hand and arm and now he is paralyzed. He was eating and drinking and now he is fed through a tube in his stomach. The fear of how the Big He would adjust was like a thick cloud in the house. He was quick to anger and wanted to do nothing but lay in bed. It was almost 2 weeks after he got home that he had the motivation and energy to get out of bed. Since then he is now out of bed several times a day, gets in his wheelchair and we have even made it out of the house.

But now what?

Well, let me tell you. The Big He has been learning and playing with new software on his surface pro with eye-gaze technology. He is learning Photoshop and Light Room. He is taking all the pictures from our post diagnosis bucket list trips and playing with them more.

All of this to say, I am totally going to brag on my amazing husband. He has pulled himself through the muck of pneumonia, trach surgery and sepsis and is finding his happy (besides the Little He and I) which is Photography.

He has always loved photography but with work, family and the million things that need to be done he never was able to find the time. That is until the diagnosis. He got himself a new camera and we began our Bucket List adventures. Our adventures have taken us to Washington DC, Bora Bora, Tahiti, Hawaii, Colorado, New Mexico and of course all over Texas. We will be able to use these beautiful pictures as a way to remember.

You can now find some of his photos on Fine Art America.com

These pictures mean more than just a wonderful adventure. They were edited by the Big He using only his eyes. Since he is still getting comfortable using the eye-gaze the time it takes him to work on a photo is lengthy. These photos are the beginning of a new Chapter. He is working with his cousin to get his camera mounted to the wheelchair so he an operate it hands free. We will continue to be able to see the world through the Big He’s eyes which will keep our memories alive forever.

April 2019

All my love,

The She