Update on our lives

Recently life has been…. moving forward. We are noticing more decline in Tim. Grove has handled the news of the reality of ALS rather well. He is still his goofy and silly self.  I had the boys pictures taken for Easter, so you should be seeing those soon. My heart still skips a beat when I take a moment and step back and look at our family. They are downright AMAZING to me. Such beautiful little boys with innocence and such a strong heart and mind in my handsome love. We are preparing for the boys birthdays. Grove will be 5 on March 21st. Yes, 5!? I can hardly believe that. I still look at them and think, these are really my kids. I have kids!? Zeke turns 2 on April 24th and we are having combined lego birthday party in-between their actual birthdays- April 7th.
We have been having some issues with Tim’s breathing machine and some scares that left me shaking and Tim saying “well, I figured it was my time.” WHAT?!!! Nope. As Tim declines more we adjust accordingly. I am currently on a trip for caregivers and I had the biggest shock of reality I had a few days prior to the trip. I was on the Caregivers of ALS spouse support group on Facebook where many of us come for help with certain routines or just to vent. Someone was asking about what to expect with the tracheotomy. A dear friend of mine, answered her in a brutal but honest way. “It was really the turning point for me. It was a hard and fast slope into constant care.” I realized that this trip, had it come after Tim needed his tracheotomy would have been nearly impossible and probably a lot more stressful. This is pretty much my last chance to go away alone before the hardest trek of this disease comes. I am trying to soak in each moment and really squeeze every rejuvenating drop out of this weekend.
Tim and I are close to finishing “The Hardest Peace- by Kara Tippets” in our therapy. It has been an eye opening book and has helped us find some footing in raising a family while a parent has a terminal illness. When Tim and I are alone, I am usually in tears and bringing up how I miss the physically able Tim. I catch my self hopelessly lost in a cured Tim. One of my friends who has been a constant support for our family said, “I plead with God when I pray for you. There are so many people watching your journey through ALS and a miracle would be seen by so many people. Can’t that be Tim’s story? A healing miracle?” I am in the reality of this disease and I realize that that will most likely not be how God is glorified through all of this. I can still dream and cry over the unlikely. I tell Tim, we would be the happiest people in the world if we didn’t go through this crap. We have seen the result of what lies ahead and if that was lifted from us, I feel like we would be the most joyful fools for Jesus. However, I also know how life gets the best of us and I am pretty sure our grateful praise would fade and we would auto pilot back into the mundane living. What do I do with that? Stop praying for healing? I am listening to “unashamed love” right now and it is a chorus of “of like a childlike faith and of my honest praise and of my unashamed love… of a holy life and of my sacrifice… worthy. You are worthy.”  Asking myself- what does a childlike faith look like in this situation? Have I seen too much reality of this burden to truly have a childlike faith. Some people confuse a “child like” faith with an unrealistic viewpoint. My child like faith could be a cause of my “honest praise”.  “my sacrifice” looks like letting Tim be fully in God’s hands and holding onto him, our marriage and our family with open hands before the throne. praying they are superglued to my hands but telling God he can give and he can take and still I will sing his praise. For this reason, I want to hang out with Job in heaven first moment that I can. Can I praise God even though my world is caving in and our dreams seem too farfetched? Would that be my honest praise? Is our honest praise only visible in heartache and despair? It gets so hard and life is too distracting! I hope for so much more.
Kara Tippets- in “the hardest peace” talks about how she prays for her husband and her children. Begging for one more day, one more moment, one more memory to store away. In that moment that he will grant her another breath. She doesn’t want her husband to go through the loss of her. But she knows one day that final breath will come and she prays for the merciful and quiet peace in their hearts. Their understanding and not their anger. How beautiful is that? Can that peace be enough? It should be. God promises us many things and I believe he will provide. What will you cling to or turn to in a moment faced with utter bewilderment or shock of what just happened? Can God keep me from falling apart? Keep me functioning for my boys? Be their peace and their comfort that I plan to receive from my Father? Would I be able and willing to step aside and let God reach into their lives through this hard pain? Is this promised from God? Ever since creation, he has planned his peace in our lives. He has promised joy. This doesn’t mean their will be never be sadness, but that a joy for life is underneath it and will be the light at the end of a seemingly long tunnel.

Now I simply need to practice what I preach. CHYEAH…. Yike-a-roos!