When my dad first got sick I was hardly even a teenager.
Suddenly I was thrown into a life of hospital stays, in home nursing, and the
constant decline of my dad. I became a main caregiver for his respirator, his
feeding tube, and other needs. With ALS you never know what the next issue
might be. Sometimes it was dad choking on his food because he couldn’t swallow.
Sometimes it was him coughing up blood. Other times it was sitting in the ER
with him while we tried to help him fight off a cold that could end his
life. When I graduated college and moved
home I cared for dad full time while working part time outside of the home. A
lot of times I spent my free time with him or working else where. When I wasn’t
home I was always in a state of fear that something may happen while I was
away. When I was home I always felt tender. I watched him decline every week,
day, and month. The anguish that I felt losing him was coupled with all
consuming worry. When dad passed there was a surge of peace knowing that the
worry would be able to cease…
Something that I didn’t anticipate was that I would find
other minimal things to replace the worry I was so accustomed to for 9 years.
Some days I find myself wondering why im in such a hurry to be home. Or I find
myself worried that people and things most important in my life I will loose.
My brain can’t comprehend simply living in the moment. My brain is only
conditioned to constantly worry about the future and the next painful moment.
I’m slowly attempting to find my place. I’m slowly teaching
myself to simply be present. I’m slowly trying to acknowledge that my fears may
always be there, but they don’t have to control me.
Somedays I find myself appreciating the moment and the day
for what it is. Others it’s a chore to make it through the day.
I feared and loved fiercely through every step of our battle
with ALS. But the battle is over. In the end my daddy won. He was able to greet
our savior with tears in his eyes and joy in his soul.
My battle with anxiety, depression, fear… It isn’t over. I’m
learning to live a life void of ALS and everything negative it brought. But I’m
also learning to live a life void of the man who shaped so much of the person
writing this.
So I ask for grace. For patience. As I try to navigate a life I always hoped would have my daddy in it. There will be days that my irrational fears overtake me. These days may bring repeated “I’m sorry’s” or “I’m so anxious”. There may be more days where I simply can’t eat because life feels so scary.
I write this to be open. To continue sharing my story
experiencing ALS. To continue to be honest of my brokenness. To continue to
invest in other’s lives. To remind everyone that we all are a work in progress.
In some ways I’m proud of all ive gone through. In other
ways I wish my trials had shaped me differently.
The only thing I know is that this is my life. My heart will
always ache for the empty place in my life that once was filled with such a
huge bright personality. But as I move forward - sometimes crawling. Or two
steps forward and one step back… I realize that Even in the midst of agony
there has been moments of joy. Moments of love… That have carried me…
Even when moments are bleak there are people who will carry
me. When I feel like all breath has left my body from the pain I look over and
realize my best friend has held me through every moment. I realize she doesn’t
know the years of grief and worry. But she does know love… And she has loved me
through every battle I’ve faced.
Thank you to each person that has loved on me and my family
as we continue to piece back together a life that feels so new to us. Some days
we will feel strong while others we will feel lost and confused. There may even
be days where we feel all of the above. But I know the only reason we have made
it through such loss is because of the impact of those who surrounded us and
continue to.
Thank you for being the glue that has helped us slowly begin
to rebuild our lives.
