It is hard to describe the last few days, not only because they have been difficult, but mainly because they have been unexpected. Honestly, when Jonathan began having motor challenges due to tumor growth back in December, I knew that some sort of physical disability could be a reality for our family. In my mind, it was clear that having a permanent weak arm, or using a brace, or a cane could be our “new normal.” As we processed this reality, God provided a way for us to sell our tri-level house and to move into a new home where Jonathan would have all he needed in the main level. As his left side weakness worsened towards the end of May, a wheelchair began to replace the cane in my thoughts. As frightening as this idea was, I felt we would be fine. I would probably need to stop working in order to make my husband’s work a priority. I almost envisioned myself helping him getting ready every day, driving him to the office, and typing for him. I imagined life would be hard, but we would be fine.
In July, Jonathan got very sick. He got weaker that I had ever seen him. As we were trying to get him better from (what we thought only was) a GI hurdle, we discovered that the tumor was moving into his brain stem, and what had once been just a scary thought became real. We needed more treatment; more chemo and more radiation. I would not return to work. In fact, I would need to become a full time helper to Jonathan since it was now evident that his left side would not go back to normal. Rather, it would only improve some, if treatments worked. Processing all of this was hard, but Jonathan and I have always been a team and I could picture us teaming up to make things happen. We would need to rearrange our activities and priorities, but we could do it; getting him dressed in the morning, driving him to work, going to PT and OT regularly, typing for him. I knew it would be hard, but I was ready. We had a plan. It always feels good to have a plan. First, we needed to get his GI system back on track, then complete radiation as he began oral chemo. Six weeks later, second oral chemo… hopefully all towards a successful arrest of the tumor. We would be fine.
Then, last week happened. Hospice was called. As we initiated the process, my mind quickly built new expectations. We would stop treatments, Jonathan’s body, now free of toxic treatments, would regain some strength, and we would enjoy sweet family times for many days. That would be fine.
We have now been in hospice care for a week and my expectations have been shattered as quickly as they were built. Hospice workers are a blessing. They are sensitive people who strive to support the patient and his family in every possible way. But hospice is impossibly difficult. It means coming face to face with an undesired reality and with decisions one wishes never having to make. Jonathan’s health continues to deteriorate and there have been curveballs that I never envisioned. Things are not fine, but God’s promises remain.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
During this sad, hard week, I have struggled with what has felt like contradictory concepts in my heart. For days, I have felt that one side of me is begging for a miracle from the Lord; knowing that it is medically impossible for Jonathan to recover, yet believing that God designed Jonathan’s body and He is in absolute control over each one of his cells. He rules over the laws of the natural world. He commands the universe. The other side of me is willing to accept that if God choses for Jonathan’s body not to recover in this world but to receive ultimate healing in His presence, He can be trusted. His plan for our family is still good and perfect. He will carry Joanna, Daniel, David and me through. He will not forsake us.
These two seem impossible to reconcile. They seem opposite. But the Bible teaches both. The Lord delights in His children’s prayers. By God’s infinite grace, we have access to the throne of grace to find mercy and help in time of need. Because of Jesus’ blood, we have the freedom to let our requests known to God by prayer and supplication. I can keep begging for a miracle. God is not offended. He sees my heart. He hurts with me. Illness is not part of His original plan. And in the same breath I can confidently say “not as I will, but as you will.” Jesus himself taught us that. He begged for a different outcome, yet He modeled for us what it looks like to have complete trust in the Father’s perfect plan by willingly saying “your will be done.”
We don’t say “your will be done” because we lack faith in God’s power over His creation. And we don’t ask the father for a miraculous intervention because we don’t trust that He may have a better plan for us. Both, asking and submitting are acts of faith and they can coexist. It is a divine paradox that ultimately reflects God’s character; He is powerful and He is sufficient.
These are long days. They are hard. We keep praying with open hands to the God that knows all things and that loves us relentlessly. We pray that His name will be glorified.
Let us consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.
He is faithful. He can be trusted.