"Hi! How are you?" (Part 1.)

While this could be a 365-part series, we will leave this as a 2 part series- you're welcome :)

But in all seriousness, if you're looking for a fuller picture of our life please don't just read Part 1. Read Part 2 coming out tomorrow as well. Promise us?!

This was def on "bad day" list

Walks are fun until they arent

Benny saw Mommy's hard day...

Many people ask us the dreaded “How are you doing?”. We all stand there inwardly knowing that it’s probably too hard to answer in the 20 seconds we have. So we nod and give a middle of the road answer that feels honest, but not complete: “We have good days and bad days, we’re making it! God has been faithful and we have an amazing community”. We all know there is about 4-20 hours of explanation we could give with more time and energy, and honestly the answer sometimes depends on the day. I remain grateful that the elephant in the room is at least addressed, even though stock answers aren’t usually my thing. 

So to get slightly more into it…

JUSTIN:

Let me start by saying that the last five years have been an extremely long and hard journey but also has not been all bad. In some ways I cannot imagine going back to the man I was before my diagnosis. I am more than ready to be physically back to the way I was but there is also my spiritual and emotional condition to consider.

My physical condition is getting more and more unbearable. I currently rely on someone else to do just about everything, even picking my nose (go ahead and laugh guilt free). It literally takes a village for me to get through a week. I currently have 10 weekly appointments handled by 7 different people ranging from physical therapy to acupuncture and massage. The highlight of my day is any time I get out of my wheelchair. I use a cough assist to help me clear my throat on a daily basis and I haven't slept in a bed for over a year and a half. I'm very fortunate to have a van that allows me to leave the house. Getting out is important to my emotional and mental welfare. If you asked me what the hardest thing is right now I would say the burden on my family. I don't have words to describe how hard it is to watch my wife get exhausted and overwhelmed every day under the pressure of carrying the weight of taking care of everyone except herself.

The spiritual growth and development I have had, especially in the last year is far too much to fully explain here but here's a few highlights. As everything is being stripped away physically I have gotten to know by experience the depth of my creator. His provision, His grace, His peace and His strength. I learned that he usually works through other people and by prayer. I have learned the incredible and super natural depth of the scriptures and that for 20 years I barely even scratched the surface. He has revealed to me greater depth in the areas of humility, Sabbath rest, intercessory prayer, grace, seeking first the kingdom, fasting, and patience. Feel free to text me about any of these topics as I truly love to engage in meaningful conversations. I have also enjoyed attending classes at our church like Apologetics and Old Testament study that have further deepened my understanding.

Then there's the emotional side of things. This one is really easy to explain. I have ZERO margin for setbacks. Whether it's someone not helping me exactly the way I wanted or someone I wasn't expecting to walk in the door I can go from okay to angry at the world in a moment. I have never struggled with my emotions before but now I deal daily with what I refer to as "overwhelming sadness".

Now they're a force to be reckoned with on a daily basis.

Although life is pretty serious for me right now I have to remind myself that it's okay to laugh. Whether it's a silly dad joke or something the kids do or say I must find joy and get through each day. I also try to play games when I can either online or in person. I mainly have played chess online and have enjoyed learning to play at a higher level. It's a very complex game of strategy and is a small way to stay connected to people I otherwise would not. Splendor and monopoly deal with the family are my games of choice for in person play.

In closing, my life today is minutes by minute. I struggle to think about the future or remember the past. My faith in Jesus is the hope I cling to and I daily say "not today satan". Being purposeful makes the drudgery of being stuck in a chair manageable. This is me today, tomorrow will be different.

---

LORI:

If I’m being honest, sometimes life feels too hard to bear. 

The hard is of course related to Justin’s downward progression and the fact that while we have SO MANY PEOPLE IN OUR CORNER, no-one can actually fix the broken thing. The brutal thing about chronic or progressive diseases like ALS is that you’re on this constant hunt for relief. The storm doesn’t stay quiet for long and so you have to find ways to stare the storm in the face and somehow find some beauty amidst the storm. You have to see the seagull that’s still flying through the torrents of rain, and see the fish still swimming. You thank God for rain and that there are others in the boat with you. You thank God for the sturdy boat that is surviving the storm and for the covering when we go below deck. We thank God that we’re learning a lot about storms itself and techniques for how to manage the cyclical nature of storms… yet the storm rages on, and the nagging knowing that while we’re getting mentally stronger the “it’s going to keep getting worse” thought pattern is destructive and disheartening. We are developing a unique strand of grit and one of the outcomes of growing up in a storm is that our kids are learning resilience and grit too. 

As a family, we focus a lot on gratitude, because it helps us to find peace in the storm rather than focus on the rain. Every night at bedtime with the kids we all share one thing we’re grateful for from the day. It’s a sort of leveling and acknowledging, even for the kids, that yes today had some hard moments, but also some good. And that general thought pattern is how we survive and finds its way into our daily prayers. We pray “God thank you for the good moments, because we know you were in it. Thank you also for the moments where you felt far, because we know you are still there too”.

Our days are monotonous, and I say that knowing they are even more monotonous for Justin. But, from the perspective of a caregiver, my life feels dedicated to helping Justin do the bare minimum. Everything I do for myself I have to do for him, but usually help him first. Routine and structure allow us to get through the essentials quickly. It’s very much a rinse and repeat rhythm. FIrst shoes, then help with the bathroom, transfer him to his chair and then brush his teeth, wash his face, lotion, nose spray, maybe shave… employing techniques I never thought about until I started doing them for someone else! Then we sit down for breakfast and I get it first for our two kiddos while he gets a few chess moves in against a cousin or uncle! I feed him each slow bite and start the juggling act of explaining to the kids why I can’t quite play yet or help them dress because I’m feeding daddy!  I cue the self-talk in my head to tell myself I’m still a good mother even if I can’t help them immediately. Justin may cough up some food and I begin the self-talk that I’m still a good wife and caretaker even if each bite can feel like a struggle. And so on and so on. More on our routine later!

I often think to myself, what I’m physically doing is not the hard part- it’s the mental, emotional and spiritual part that requires my energy.

It seems like the hard shifts based on the season of the disease.  In the beginning, before symptoms showed up, fear of the future was our biggest enemy.  It was the loss of dreams, because we saw no future anymore. It was fear over what our relationship would look like. It was the fear of what would happen to our family unit and fear for our daughter and the unborn baby in my belly. Would he grow up knowing his father? Fear is a thief and I’m glad we we were encouraged to control fear early on and do work to notice what it does to us daily! As symptoms became more noticeable the hard showed up as unhelpful questions, people telling me their stories of their personal ALS losses (please don’t do this to me!), and the shift of starting to do more myself. Laboring without the helpful hands of my husband rubbing my back. Rushing to quiet Benny in his crib so Justin could get a full night sleep, filling the car with gas, driving everyone everywhere, taxes, anything that required his hands or dexterity fell to my plate. While significant, the pain continued to get worse as the hard turned into not just more responsibility but doing basic needs twice. Shower for myself and shower someone else. Brush my teeth and brush someone else's. Eat my food, but help someone eat theirs. It was a bit if a circus when I was feeding my toddler, baby and husband! But still, the absolute hardest part to date isn’t the physical… it's the loss of communication and relationship. It’s the one thing we promised we’d never let die and I’m thankful we remain so committed to our love for each other, but talking less, and not being able to show love in the same ways or the ways we so desire is very hard.  I remember crying one day and saying to Justin “this feels like such a tragic love story”. His response was “but at least it’s a love story!” So true :) And we remain committed to each other and that!

So you can see why it’s hard to respond to “how are you?” - mostly because the most painful part is losing intimacy and relationship with my favorite person in the world… and not because of choices we’ve made but because of a *&%$#  (stupid) disease is changing the way we communicate, our roles, ways we depend on each other, how we spend energy, activities, dreams, finances, parenting… everything is touched and tainted. It’s brutal missing someone you have right in front of you. We both experience loss and feel so very little control because we just can’t love each other the way we want to love each other- and that is the hardest part!