Fighting ALS, Fueled by Faith

About 23ish years ago my wife and I had the opportunity to take our firstborns (yes twins) to Kauai with our wonderful friends who are now framily (friends/family). The twins were 19 months old. I know for many, that immediately send chills up your spine thinking of a six hour flight with two 19 month old kids. Believe me, the others boarding the plane were hoping to have not drawn the short straw by having to sit by us. My wife, who is absolutely exceptional with young children, trained the kids ahead of time on “what we do when we get on the airplane”, which amounts to taking out your blanket and sleeping. It worked quite well and we arrived alive and reasonably rested! It was an amazing trip of natural beauty, a hula (not a Samoan war dance), Veggie Tales and my twins first soda ever on the beach! We reminisce about this trip often.

We recently got an offer from the timeshare company for a “deal” to use our points to go on a shorter trip to Kauai. I booked it and then told my wife. Having a terrible diagnosis saved me from certain death in this moment – silver lining? So tomorrow we are leaving for a 5 day trip to Kauai. Fantastic right!

As we have been getting closer to the trip I have noticed I was having a challenging time getting excited about it. Having ALS means your energy is severely limited, mobility is also challenged and you find yourself unconsciously comparing your capabilities to what they used to be. Unmet expectations typically lead to pain of many flavors. Not being able to get excited about things that used to excite you isn’t solely reserved for ALS – it happens for lots of people for many reasons.

At the same time I am wrestling with this, I get a text from my good friend and pastor who says I need to check out the last ten minutes of a video he saw. I watched it and it spoke to me. Basically it reminded me that intimacy with Jesus doesn’t come from pain, it comes through submitting our pain to Him. I am learning in this journey not to submit it and then not take it back again. He can handle it and the beauty is He doesn’t want me to carry it around anyway, He wants me to fully submit it to him.

After much prayer, reflection and submission I have transformed out of my funk and am really excited to enjoy a few days away in a beautiful place with my lovely wife and oldest daughter. Jesus reminded me that they care very little about what I can/can’t do and very much about just being together. More importantly I am now in the right heart space to create memories and hopefully be infectious for Jesus on the trip. I might even convince my wife to let me have a Coke on the beach!

Who are you trusting to know enough about you and where you truly are at currently in order to be able to walk with you on your journey? I thank God every day for those He has provided – and I have embraced.