I Still Have a Lot to Live For!

Upon discharge (5/23/22), after 8 days in the hospital, I drove the electric wheelchair through the lobby at UAMS (University of Arkansas Medical Center) as the evening sun shone in through the large windows.  Cool air hit my face. I felt alive and hopeful. A mother and son sitting on a bench looked up to see me, this disabled lady with a tracheostomy, whiz by. I smiled at them. “I still have a lot to live for,” I thought. 

Those days in the hospital were intense. When we arrived they admitted me to ICU and the pulmonologist came to talk to me about getting a tracheostomy. He explained many things and gave me a day to finalize in my mind if this was really what I wanted. I was thankful for the extra time to pray and make a decision. 

That afternoon I was resting and communing with my loving Savior about His will for me and a sense of peace washed over me with the thought of getting the trach. 

I also found this encouraging quote by Tim Green, a former NFL player with ALS (when deciding about getting a trach or not):

“I thought of our youngest son, and that I owed it to him to be around, if I could, for his high school graduation, or college graduation, and for our youngest daughter, to maybe see her get married. Suddenly it wasn't about me, it was about them.

[Ventilation] is really not that bad! It takes some getting used to, no doubt, but if you take it a day at a time, or a minute at a time, you get through it, you adapt. One plus is that you can finally breathe." Tim Green

After these confirmations and talking with my family I told the doctor I was ready to move forward. I woke up after the trach procedure on Tuesday morning, feeling like I could breathe well for the first time in several weeks. Although there were some major adjustments and not a completely smooth transition from there, the initial relief was sweet.  

My husband, two daughters, and sister lovingly rotated to be with me around the clock and I had excellent care from the UAMS staff. Everyone who came into my room received one of my “ALS, a Loving Savior” cards with my FB page and blog information on it. We were able to share God’s love through trial and many were obviously touched by my story.

Each day brings new trials and blessings. There is much to learn and having a trach necessitates someone with me all the time who is knowledgeable about suctioning and knowing what to do in a crisis. We’ve already had a few “crises” but the Lord has seen us through.   

There are still many smiles and time to make memories with family and friends.  Communication is a challenge, but I still try to be there for my kids with a listening ear and words of encouragement. I enjoy ordering food online for Walmart pick up and putting in Amazon orders for needed items for my family. Texting friends, journaling, blogging, listening to audiobooks, memorizing scripture, sitting outside, going on wheelchair "walks" and enjoying time with friends are other memorable activities. I am learning to take pleasure in the little things and try not to allow myself to bemoan the fact I am unable to go on many of the typical family adventures.

Even though my life at the present seems far from ideal, each morning when I wake up I praise God for another day. I still believe He has a work for me and as long as He gives me breath I know that I still have a lot to live for!