Jonathan's Facebook Post for Today:
The real hero in my ALS journey is my dear companion, Amber. I cannot even begin to describe how much she does for me and our family! Being a spouse caregiver is hard! Right before the birth of our first child, she gave up her career to stay home and raise our children. That has been a beautiful blessing for both of us as I continued to work and provide for our family. She made great sacrifices while I was in school finishing up my degree as a nurse anesthetist. There was about a 9 month period where I physically was not present in the home except for the occasional weekend. She diligently cared for our two young children without having family nearby to offer a reprieve. As we moved to Southern Iowa, life was beginning to blossom as we settled into a new home, new career, and added two more children to our family. It was a beautiful time for both of us, and she continued to take care of our family in the best way possible.
As life would have it, just as we were getting comfortable with the way things were, we felt like we needed to move back West to be closer to family. So, I packed up my truck, took the three oldest boys, and headed West to start a new job. I left Amber and the baby to finish packing our home, getting it ready to sell, and then to join me in Oregon. She was gracious through it all.
After living in Oregon for 2 years, adding a little girl to our brood of boys, and moving an additional time, I was called to be a bishop for our church congregation, once again leaving Amber to raise our family while I worked and attended to church responsibilities. Over the course of the next 3 years, we added two more children to the mix. That was where we were when I was diagnosed with ALS.
Amber continues to selflessly take care of our 7 children, but now she has the added responsibility to care for me. I’m really worse than a newborn baby! She feeds me, she toilets me, she showers me, she dresses me, she helps me move throughout the day, she takes me to my appointments and helps me get out of the house. She then gets me ready for bed, gets me into bed, and puts my bipap mask on. Lest you think she quits there, she wakes up in the middle of the night to adjust me or help me to roll over in bed, and sometimes she has to wake up to adjust my breathing mask. She does this routine every day...by herself...no weekends off!
This might not sound a whole lot different than caring for a baby, except this baby doesn’t weigh 10 pounds. And most babies grow and start to do things independently for themselves, but it’s just the opposite with me. I become more dependent every day for every single thing. And then there’s the little things throughout the day like scratching an itch, wiping drool off my face, cleaning my glasses or my eyegaze, and feeding me a snack. She does all of this while continuing to take care of 7 children, 2 of which can be found hanging on her at any moment of the day.
We are a normal family. What I mean by that is the kids sometimes fight, they whine, they don’t always want to do their chores, they make messes, they get hurt and cry, they demand attention, and they throw temper tantrums when they don’t get their way. Normally there are two parents to help out, to scoop a crying child up, or to kiss them and assure them that it’s going to be okay. But this responsibility largely falls on Amber now. She spends an enormous amount of time helping our children.
When does she take care of herself you might ask? Well, she doesn’t. She continues to go about, giving selflessly of herself for those she loves, and she does it with a cheerful attitude and faith in God. Now she has an occasional bad day, but who wouldn’t under this much stress and pressure making demands of your time. Thankfully, that’s where good friends step in to buoy her up!
Amber is truly the hero! I just sit here (literally) in awe at the amazing woman, wife, and mother she has become! We have enjoyed 18 years of marriage, and we hope to enjoy many more. I love her with all of my heart and I’m grateful that we have eternity to spend together! It will be a grand adventure!!
#ALSAwarenessMonth #ALS #HopeIsNeverLost #TheRealHero
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