Morphine
DIPG is a terminal journey. The tears shed by our doctor who told us his condition could not prepare us for the many tears we shed along the way. We struggle as a society to comprehend death. Our culture celebrates the new, young, and powerful. We deny and hide away from our common destination. On this journey, we lived with the probability of fatality and prayed for a miracle.
So how do you share the realities of death to children… your children? What is it like to shop for morphine at your local grocery store? Glad you asked. The following is a piece of what I could share then:
April 30, 2016
Sixteen days ago we began the journey with our new travelers with hospice. We asked our lead doctor at Children’s what to expect and how long “should” the rest of Josiah’s journey last. He rightfully gave us caveats about how difficult it is to know. But he told us between a week or two weeks to a month or two. So we celebrate and give thanks for passing through the lowest of our expectations this weekend. We continue to treasure each day that we get to experience Josiah’s humor, wit, and inner fortitude.
He does continue to get weaker. We now have to carry him into the bathroom. He continues to have difficulty with his jaw so chewing and talking is a strain. He has been sleeping well as of late, for which we are grateful.
Last weekend we were able to discuss Josiah’s probable death with all three children. The social worker with hospice cracked open the door, but it wasn’t until the next day that we walked through it. Tears flowed mightily and regularly. Our focus was and is on our fixed hope in the finished work of Jesus for life after death. We talked and explained how it will be for Josiah to have a new body that will not be constrained like his present one. How he will be able to run and jump into the arms of Jesus when he sees Him face to face. Heaven will be his home and we will be joining him sometime in the future.
My dad had talked to Josiah earlier Saturday morning in generalities about heaven and time. We believe that God is outside of the constraints of time. Life eternal continues with Him in heaven and we will enjoy life without the “normal” experiences of time. So we explained to our children that even though Josiah will probably beat us to heaven, it will not seem long to him when we will “quickly” be there with him. Josiah chimed in what my dad had said hours earlier, “A thousand years is like a day to God.”
It is difficult to know how much of our discussions about death and heaven our children (6,10, and 12) grasp. But be assured they are really contemplating the realities. For example, Josiah wanted to know if we peed or pooed in heaven. Well, do we? (I don’t think so because I believe our bodies will not “waste” a single morsel of what is consumed in our next bodies.) We really can’t know for sure. But it is great to know that he is seriously wrestling with the facts of life in a heavenly future. So much so that later he said, “I would rather die now than five years from now because heaven sounds great.”
The apostle Paul would undoubtedly agree for he said, “For to me to live is Christ, and to die is gain.” Yet I would be remiss if I didn’t tell you of some times my son has also rightfully expressed fear. (Please forgive my description) With puppy dog deep brown eyes through clenched teeth, he has spoken softly, “Daddy, I’m scared. I don’t want to die.” When he says this I hug and kiss him. I affirm him and assure him we don’t want him to die either. It’s good to be sad. It’s good to be angry. And it’s good to laugh when you want to. We will be there with him every step of the journey.
The following is a snapshot of what these days were like.
The hospice doctor prescribed morphine for my ten-year-old boy. I still struggle thinking that less when typing it. It is not just to help him when pain occurs, but to assist him when breathing begins to be a burden. Laboring to breathe will actually hurt him rather than help him. Therefore the morphine will keep his breathing calm. How ridiculous is that? But it does make sense.
So I go to our local grocery store to pick up the morphine. While waiting, a fellow traveler with us gets in line. He was off work fighting seasonal allergies that were currently winning as he had a sinus infection. He greeted me with a warm smile and assurances that his family continues to pray on a daily (or more) basis for my family and my son.
See, I cannot escape the goodness of my God. He is present. He often reminds me of His presence and provision through you. So I thank God for each of you. These updates are easier to read than writing… but I know they are not easy to read. So I do thank you for pressing on to lift us up to a loving God who I pray we will each meet someday. I pray that we will all experience the loving eyes and joy filled smile from Jesus that will greet me and my son… “soon’”.
What I can share now:
I still go to that same grocery store where I went to fulfill the morphine prescription. I think about the intersection of the normal routine of food shopping and the trauma we were living that very real day. Who picks up morphine for their child?
At that intersection, God placed a friend with a normal physical ailment who was treating it with a normal prescription drug. He did not ignore me or ask me how I was doing. He did not compare his situation to mine. He simply let me know why he was there and how he was with me in prayer.
What can you do to help someone through painful or impossible situations? I doubt you will be the solution to their troubles. The truth is they are not seeking salvation from you. But by being present and truly praying for them, you are helping. If you show up you can be like my friend who showed me how the God of the universe had His eye on little old me sitting in the corner of a grocery store pharmacy barely holding my heart and mind together. You may be the person that God uses to share far more than you will ever know. Will you choose to simply love in a “small way” trusting God can use your gift in a big way?
God indirectly used a close acquaintance to tell me that He was sitting next to me on those awful plastic chairs. Friends, we are never alone. It is better not to have something “profound” to say. The hurting person is probably not in a place to hear it and honestly, I doubt it is profound enough to resonate with the depths of their pain. Be present and brave to not fill the void with empty, well-meaning words. Thus I end this blog like before as we trust in God and not ourselves: Deo Optimo Maxino (To God the most Optimal, the most Maximal)
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