Today I feel as if someone has stuck a pin in me and drained all of the energy out of me. I have been transported back to many, many very difficult, sad and challenging years. I shall explain this and what may be a confusing title.
One of my stepsons, Dale, had serious neurosurgery to fuse three vertebrae in his neck thirteen days ago. Quite unexpectedly, when he awoke from surgery, he was confused and unable to move his arms and legs. He has regained the use of his arms and hands and his mental clarity, but not his legs. And he remains in pain in his neck and legs even though he cannot move his legs. He is quite overwhelmed, traumatized and depressed. As are we all as his family. This was not the outcome that was expected from this surgery.
As it stands now, the happy, independent, well functioning, and mobile Dale we knew is now gone. We have no idea what the future may hold for him, his wife and young son. This situation has been a terrible shock with many unanswered questions and no explanation for what has happened.
This has dragged me back to the time when I lost my own son Chris. Then followed by his father, Fred's, death six weeks later. I barely had the energy to get out of bed. I woke up this morning feeling okay. The phone rang almost immediately. I spoke with the admissions coordinator from the acute rehab center to which Dale will soon be transferred. As soon as I got off the phone, I felt this tremendous loss of energy and sadness. I feel on the verge of crying, but the tears have not yet come.
I updated my husband, Dale's father. Then called Dale to update and reassure him so he has an idea of what to expect. I have become the de facto point person with the healthcare personnel. I am the only nurse in the family and have had much experience in neurology and rehabilitation care for spinal injuries.
So once more, I am dragged back to the difficult situation of caring for my husband, Fred's, ten year illness. I am sure I don't need to tell you many of you the myriad of difficulties I had dealing with hospitals, doctors, nurses, insurance, case managers and insurance medical directors. I even reached a point where I called Fred's good friend and best man, who was also a good friend to the CEO of our insurance company. His intervention did help with a few problems, but not all.
And here I go, again now, with Dale. Dealing with hospitals and healthcare personnel is no easier now. If anything, it is worse. Trying to be a go between with health care givers and facilities with Dale, his immediate family and extended family. I was not prepared for this. I have thought about having to one day possibly care for my husband as we aged. Yet here I am. Immersed in coordinating caring for a disabled stepson. And thinking what if...? Can I handle this again? Can my husband handle it? And I am totally worn out!
Though Dale is still with us, will he ever be the same Dale? Will he be able to adjust to a disability? How will this affect his wife and son? How will he mange at home? Will he be able to return to his present, small, two story home if he is in a wheelchair? I don't know the answer to these questions and neither does anyone else.
My husband and I are not near Dale's home or near the hospital. I discussed with my husband the need to be there physically and emotionally for Dale. My husband also experienced, with his late wife, the same difficulties with her illnesses as I did with my late husband. It is difficult, even traumatic, for him to go into a hospital. Neither of us ever wanted to re-marry for fear of having to take care of a very ill spouse again. With the passage of time, this fear lessened. We found each other and love once more.
I also talked to my husband about the pain of losing a child. The many serious complications Dale could face as a result of his being unable to use his legs. I felt I had to tell my husband there were two dark roads he did not want to go down. The first road, "I should have done MORE for him." Second road, "I should have been THERE for him." I told him, these very dark roads are difficult to return from. I hope he understood because there is uncertainty about Dale's future. Many adjustments to be made. Many hurdles to overcome. And some serious pitfalls to be prevented.
As parents who have lost children we are bonded in many cases by the numerous health care difficulties and certainly the profound grief and trauma of losing a child. Navigating a road from this grief to try to come back to a somewhat productive life with family, friends and employment. It takes a lot of faith, courage and perseverance.
We have journeyed down the road of losing our children. A road which never completely ends and has dark tributaries along the way. And I journeyed down the road of losing a spouse. That was delayed because I could not process the loss of my late husband while processing the profound loss of my son. I have faced my own mortality both with complications from surgery and from having breast cancer.
Now I am called to journey down the road with a dear stepson who has lost the only life he has known. Lost the way his family and friends have always known him. Lost his life without physically dying.
I am doing as much as I can. As always, I turn to prayer and my faith for Dale, his family, my husband and myself. God never deserts us. May He walk with me on another journey. Saint Padre Pio says, "Pray, hope and don't worry. Worry is useless. God is merciful and will hear your prayer."
I am hoping and praying for a miracle that Dale will walk again and I can remain strong by his side.
"Bear one another's burdens, and in this way you will fulfill the law of Christ."
Galatians 6: 2
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