I have a specific prayer I am asking of the Lord right now…”Please hit the pause button, Lord.” For the past nine months I have been spiraling downward. It seems I just get used to one new way of life and then another one comes along. There has been no break. Each month I think “ok, I can get used to living like this…it’s not great, but we are making it.” Then something changes. And with ALS, the changes are never good.
God has taken care of me; He’s faithful; we have much to be grateful for. These are truths I try to focus on each moment. But to be perfectly honest, my new life is exhausting. Not just physically, but emotionally. We have virtually been thrown into a foreign land where we don’t know the language nor the customs. Hours are spent on the phone with the doctors and insurance providers. All the i’s have to be dotted perfectly and the t’s need to be crossed properly.
It feels like we are in the middle of the ocean barely hanging on to a life preserver. We get hit by wave after wave when we just want to climb out of the water and sit next to it watching the sun set. We get choked up over little things every day; Barely a week goes by where we don’t sit down and just sob.
The hardest part is watching those I love suffer. They have to help me more each day. Their worlds are upside down now too. They have to go about their normal duties, plus worry about me. They try to hide their fears and sadness, but it’s impossible to do so continuously. Add to that, we are all still sinners. I get irritated when they don’t know what I need help with or they don’t do it the right way; Likewise, they get frustrated when they want to help me, but don’t know how. And like I said, we just get used to the “new normal” and then something else starts to happen.
Don’t get me wrong – I have moments of joy and laughter each day. Mostly when I hear from or get to see a friend. But today, I am asking for a pause in this awful disease’s ugly symptoms….for a few months would be nice…but I’d even take a few weeks.
Isaiah 40:31 But they that wait upon the Lord will renew their strength. They will mount up on wings as eagles; They will run and not be weary; they will walk and not be faint.