Monday, September 21, 2015

Walk to Defeat ALS and Choose Joy


If you are short on time and can't read this entire post please skip down to the very last paragraph!

This weekend we were with my family in spirit as our family team participated in the Walk to a Defeat ALS Evergreen Chapter for my dad. I am so grateful for the amazing parents I have been blessed with.  They are pioneers, they keep on going and don't give up.  They are able to find joy and thanksgiving even in the midst of this battle against ALS....for which there is currently no cure. My parents both inspire me in many ways.  So often we can find ourselves around a Debbie Downer, maybe even being one ourselves!!! Yet with my parents going through one of the worst and hardest things you could imagine going through, they are still amazing to be around. Not that there aren't rough days but I don't hear my dad or mom seeking sympathy or complaining...I do hear them speaking words of gratitude for the tender mercies The Lord and their community has shown them through this journey.  I hear my dad speak of his love for His Savior.  I hear of my dad doing what he can to serve others, with the help of technology, to edit family videos for his dad and brothers and our family, as well as logging genealogy for his church. My dad has always cared about others in his profession as a MD and still helps people when he can in that regard.  My mom still serves in her church as well.  At first I was concerned if it was too much for her with all she has going on but she's happy to serve and says that it's important to do things outside of yourself and your own situation so you aren't just so wrapped up in your own problems.  It's a positive outlet when she is able to serve and prepare a lesson for others.  

My parents speak words of gratitude about the advances in technology and access to medical equipment that makes life with ALS easier, like my dad's chair that he spends most of his time in.  Thankful for access to medical marijuana which is probably the last thing they ever thought they would try but has been the only thing that really helps with his symptoms.  My dad has described the cramps in his legs like being attacked by 40 biting monkeys but CBD oil and medical marijuana keep those "biting monkeys" away.  With a disease like ALS, whe there isn't much that can be done...it is more than a blessing to have something that can help make life more bearable.  

When I was with my dad recently, We were talking about ALS advocate Steve Gleason and how his former NFL teammates helped him get up Machu Picchu and I asked my dad if there was anything he wanted to do. He said he was so grateful for the active life he has lived and had so many adventures and great outdoor experiences in his 59 years of life that he doesn't have a bucket list of anything he wishes he could still do.  Again, his response was one of gratitude and contentment.  Oh if all of us could be a bit more grateful and content!  

As the season changes to fall and we start thinking of thanksgiving, let us remember to be thankful everyday because there is always ALWAYS ALWAYS something to be thankful for.
My parents are such beautiful examples of practicing that!  So wherever you are today or whatever you may be going through, just think of one thing to give praise and thanksgiving for.  Find a quiet moment in the day to rest in contentment with the small joys of living like being able to cup your hands around a warm mug of coffee, to stroke a child's hair and give a kiss on the forehead, to lay on the floor with your kids or a pet and enjoy the moment together!  Oh how nice it feels to easily pick up a hand and relieve an itch on the neck, to simply roll over in bed and fall comfortably back asleep...to hold hands with a loved one...things we do without a second thought.  Maybe you are waiting on an unanswered prayer, maybe you aren't the praying kind but there's something that could be better in your life...either way....if we can find gratitude and contentment in the simple things, we will have a much richer life.  And no matter what age we live to be, whether we are gone tomorrow or live to 100, it seems a much better life to live with the peace that comes from being grateful and content than live a long life feeling jaded, bitter and sorry for ourselves for whatever didn't go our way.  I'd rather try to be a Pollyanna, choose joy and be an uplifting person to be around. It's not always easy but this experience with my dad has helped me to cherish and live in the moment more than ever! As my dad said in his speech in the opening ceremonies for the ALS walk last year "Make every moment count" and sometimes making the most of every moment might mean going on an unexpected adventure, sometimes it may mean resting and soaking up the beauty of the mundane, lots of times I think it's letting go of what we think we want and just being mentally, physically, and spiritually present internally and outwardly and letting God do whatever it is He's trying to do in us to help us be who He intended us to be.  

Today I pray a prayer of praise and gratitude and ask that The Lord help me stay focused on what really matters, that rather than grow up and become hardened and set in my ways, he would continue to always make my paths straight and help me cherish my days.


Here's the awesome dad I'm telling you about...
Visiting Dr. Papa at work about 2 years ago.  He was using a cane to help with balance but was still going to work and pretty much independent and we were all hoping and praying for a miracle that it wasn't ALS or that it would halt and reverse with all the various protocols that others have found success with.  Praying and exercising the faith for a miracle to happen and still watching things progress is not easy to say the least.  The day I found out my dad might have ALS I heard the kutless song on the radio for the first time "Even If the healing doesn't come..." The timing of hearing that song was interesting and that song still helps me now.  Sometimes when we are weary of praying, just being able to think on the words of that or other songs is really helpful.  


My dad has always enjoyed reading to his grand kids and doing other fun activities with them.  Last summer he helped them put together a volcano science kit, and whatever he couldn't do due to ALS he gave directions for the kids to follow.  And up til now one of the kids favorite things to do is play board games with Papa, especially Settlers of Catan.  His arms and hands have very limited mobility now so one of the younger kids will be on his team and move the game pieces for him.

He hasn't let ALS rob him from having fun with his grand kids.  They love going for rides and steering his chair, and he's let them drive around in his older chair with him and race.  He was able to get down onto the beach on our recent family reunion in Lincoln City, OR and zip around on the beach with the kids. We sit and visit and laugh and he's also great at finding great shows for them to watch together on Netflix or planning other fun activities like taking the kids to the trampoline park and enjoying the fun. And he has taught my kids that happiness is a choice.

When we were visiting my parents this past year, my daughter asked my dad "Papa, are you happy even though you have to be in that chair all the time?" And I will never forget what he said to her and I hope she doesn't either. He gently and warmly but with sincere intensity responded to her with this answer..."Well, happiness is a choice you have to make every day.  Sometimes things don't go the way we want or maybe for you your brother might be irritating you, but regardless of whatever is happening to you and around you, you have to make the choice that you are going to be happy.  So yes, Jordan, even though ALS has taken a lot away from me and I have to be in this chair, I'm happy...because I choose to be."

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