New Normals

As far as a possible improvement in my ALS symptoms, I can't say that I have anything positive to report. In fact, the opposite is true. Every day, it seems that we are experiencing "new normals" in our home. 

It has been about 3 years since my first symptom of slight slurring of my speech.  I praise the Lord for that time. Until this past December when I fell backward hitting my head on the sidewalk, I still lived a fairly “normal” and active life taking care of my family. Now the picture is quite different.  

Kevin (my dear husband of 33 years on May 8) has become my main amazing caregiver. He gives me my bed baths, blends all my food to put in my feeding tube (as I’m not able to eat by mouth), and does much other care, including our evening routine and night duty.  His devotion to me, faithfulness to God, and resilience amid trial is a constant, daily living testimony to me.

My dear daughters do SO much to help me in numerous ways, taking much of their time. My son-in-law often cooks food for us and helps with various things. Micah helps with chores and keeps us laughing. Nathan keeps in daily touch and comes home whenever he can. Many others unselfishly give of their time such as my sweet sister-in-law, devoted niece, and several faithful friends that help me in the mornings when Kevin is teaching.  My needs and the duties of those helping seem to be constantly changing. I am so blessed to have such amazing support.

For the last few weeks, I’ve had an increasing weakness, making it difficult to sit upright for very long or walk. I am either in my wheelchair or bed all the time (how thankful I am for the electric wheelchair and adjustable bed!). 

Communication is a continual challenge as it takes much effort and time to write or type what I want to say. My left side is weaker than the right and my left hand doesn’t work very well, so I type by holding my phone and typing with my right thumb (thankful I am right-handed!).

The biggest challenge recently has been an increase in difficulty with breathing.  There is no set progression with ALS. Everyone is different, but often with bulbar onset one’s breathing becomes affected (due to weakened diaphragm and intercostal muscles) sooner than with limb onset. 

I have a Trilogy breathing machine (kind of like a CPAP) that I have been using at night for several months, but over the last few weeks, I’ve had an increasing need for it during the day to the point where I’ve been wearing it almost 24 hours a day. This is not fun for many reasons, one of them being the scary-looking mask that is such a barrier between me and others. 

We had 3 doctor's appointments (pulmonologist, neurologist, and ENT doctor) in the last week and they are all recommending I move forward with getting a trach. This is a huge and personal decision. It seems we have come to the point of needing to make this decision far too soon and desire the Lord’s direction. Lord help us! 

So, what to say amidst the increasing challenges and new normals with this devastating disease? I told Hannah while helping me in the bathroom the other day, that not in a million years would I have pictured myself in this condition today.  But here I am; I can’t run from it or deny it.

God was not unmindful of me or where I’d be today. He has thoughts of peace and not of evil towards me. I still strive to keep my eyes on my loving Savior to personally be a very present help in my increasing times of acute need  (sometimes more successfully than others). 

Sometimes when I watch a family enjoying a meal, talking together, or walking around the lake, I am reminded of the simple pleasures I often used to take for granted and miss those good ‘ol days. Life has taken an unexpected turn. 

But as I think of what I’ve lost and what may be ahead for me and my family, I also need to praise Him for what I still have. When I long for a different outcome than what the medical books predict, I am reminded of this quote (paraphrased): You don’t want a different “story” for your life because you don’t know what a different ending would hold. In allowing something today God may be saving us from something in the future. 

In other words, none of us know what the future holds, so we have to trust that whatever God is doing in our life today is part of the big picture of Him working out His omniscient plan for our future. So, even when there are so many unwelcome new normals in our lives, the one unchanging fact and “normal” is that God is still in control.