I haven’t written much lately because the past three weeks have been emotionally rough for me. My ALS doctor prescribed something to help me with my depression and anxiety so hopefully it will help.
Every day we are all challenged to adapt, accept or reject changes in our lives but some of the changes are difficult. Losing my voice has been really hard on me and now my legs are almost useless. ALS has taken over my body leaving me helpless. Over the past twelve months I have lost twenty-three pounds which puts me at 107. My respiratory system has declined significantly as well, which qualifies me for hospice. We decided to hold off on hospice for a while not because we are in denial but just because we can. When the time comes we will welcome hospice and the great ministry they offer into our home and our lives.
I’m feeling great today. The sky is blue and the birds are singing something beautiful outside my window. I hope you find beauty in your life today. And may God bless you, too.
For the last two weeks I’ve been really sick with a respiratory bug and at one point I thought I was going to die. The first night I was sick I saw Mark sitting in a chair next to our bed with his head bent down praying. My breathing was so labored he wasn’t sure I would make it through the night. During that time I asked God to take me to a place that had no more suffering and sadness, to the place he took Liz and Maryanne a short while ago. Yes, at my weakest moment I wanted to die.
Gratefully I am feeling so much better but during those painful two weeks I thought about one of Richard Rohr’s daily meditations. In his April 13th meditation he wrote “You come to God not by being strong but by being weak.” At my weakest moment I couldn’t find the logic behind this statement but today I can.
Our trip to Florida was perfectly orchestrated by God and carried out by Mark, Bryan, Kelly and Jim and LeeAnn White. Now we are about to enter a more difficult path in my ALS journey as I continue to decline. My physical body is a lot like a paraplegic which makes for a lot of extra work and worry for the people around me. I pray that God will continue to plow a path filled with grace and astounding beauty for all of us.
I hope everyone had a beautiful, loved-filled Easter.
It’s up to me and no one else to choose my path. It’s up to me and God and sometimes I forget to include God and go it alone. Last week I struggled emotionally because I thought I could go it alone. I wanted to do it my way so I let my mind drift back to the way it was before ALS. I need to let my past go and embrace today. It’s really hard for me some days. I need to stay here in the present and not worry about my future because so far I’ve been able to adjust and God willing I will continue to adjust.
My life is filled with so much joy even without arms, legs and a voice so I need to hold onto the joy and God willing I will.