Hospice
“‘I am with you. I will never leave or forsake you.’”
Have you experienced a time that seemed beyond real? A time where you are certain that you are wide awake but the situation you are in is far from a place you ever thought you could be. Maybe you find yourself searching for answers to questions you would have never dreamt you would ask. For example: how do you prepare to live in the final days of your son’s life? How do you prepare your son? How do you prepare your children? How do you live in this in-between?
My hope is in remembering these days, we can find a path to living in this “in-between” time. So what did I do? First, I leaned on the professionals:
April 19, 2016
We met our hospice lead nurse and social worker on Monday. They are as gentle and sweet as I expected. We have the leadership and guidance of professionals to come alongside us where no parent ever wants to be. Grateful.
The nurse is the key to managing his physical well-being. She will continue to evaluate and be available to answer questions and elevate problematic symptoms. She will provide both medicines and equipment as needed. For example, she just ordered a “hospital” bed for both his mom and my home.
The social worker will help in a myriad of ways. She is helping us communicate to Josiah, Ella, and Becket. The conversation began with Josiah today but will continue. We will wait until Friday after school to start breaking the news to Ella and Becket. We will be wrestling with this horrible reality this weekend. The social worker is also lining up an art therapist to meet with Josiah’s siblings. The art therapist will help our six-year-old express with art instead of trying to communicate the inexpressible in words alone. Plus Ella has some talent for art and I know this will help her share her gracious, huge heart for her brother.
How much did they help? I really cannot tell you. But I cannot imagine walking through these days without them beside us or at least knowing they were at the ready with merely a phone call. There are days we live with no great path to health or help. We have to remember we are not alone especially when we can be so alone in our thoughts. It is important to listen to professionals speaking into our lives to encourage our next steps.
Josiah is still in good spirits. We can have a conversation but his responses are very short due to not being able to move his jaw. We will be switching to typing on the iPad soon.
I will not continue to describe Josiah’s physical changes these last days. They are all important yet not at all important. His comfort through these last days is paramount. Knowing that we all love him is essential. My focus is reminding him no matter how deep and wide our love is for him, it does not compare to the surpassing love of his Heavenly Father.
It means the world to know many are still praying for a miracle as we focus on our current reality. I will not be able to or try to explain why God has not answered our prayers the way we have asked. It will be another truth I will not be able to comprehend. But there are many things I do not know and are beyond my comprehension like the bending of gravity near a black hole or the awe-inspiring beauty of a blossoming flower. Why does it happen? Why does beauty move our inner being?
So I will file my painful questions away in a large drawer filled with many files of unanswerable questions and observations. My family and I will lean on what we know. We have been given today. No one is promised tomorrow. People who love us surround us. Our Father gave Himself for us by a horrible death loves us. (The truth is I will never be able to fully comprehend his gift of the life, death, burial, and resurrection of Jesus Christ, His only Son.) He knows disappointment, pain, and loss. He is here to shepherd us through this valley. We know Him and are known by Him. One day we will know, but until then I rest on what I do know: He is love and He loves us… especially when I don’t feel it.
What else do you do when there are no answers?
Be present in the moment, in every moment you can.
I committed not to give many details of his decline. I needed to keep in the present and not record as much the events of his struggles. Writing took me out of the present. So I mostly stopped.
I also tried to push my questions aside. It was not the time to contemplate on what I could not know. I did not want to focus on a future I did not want to see. It was essential to focus my thoughts on what I did know.
My God loved me, was loving me, and would always love me.
My God loved Josiah and would never stop loving him.
My God loved my family in a way that I could not and would lead them through places I did not know how to traverse.
When you are living in an “in-between” time, you must commit to the truth. You are not where you want to be. You are not going to be forever be where you are. You cannot get to where you want to be on your own.
Lean on professionals who are there to guide you.
Lean on the truth of God you knew walking on paths you remember to give you strength walking down paths you want to soon forget.
“I am with you. I will never leave or forsake you.”
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