Introduction: I wrote the following story about when I was waiting at Lynn’s bedside to find out if he was getting better or worse. I submitted this story to a writing contest at work and won second place. However, I wanted to share it with you because many of you can relate.
Standing Beside His Bed
Standing beside his bed, watching the rhythm of his breathing and his chest’s irregular up-and-down motion, I think of where we have been and where we may be heading. Watching and waiting for that next breath. Listening to the rumbling of secretions he cannot clear on his own; it is strange being on this side of health care. For years I was on the other side; the one checking the vital signs, assessing the patient for changes indicating improvement or decline. For years, I was in control. Now, I’m on the other side…waiting…watching…hoping…alone in his room, his strength when he has none.
I learned about multiple sclerosis in nursing school years ago, but the overview in the textbook in no way prepared me for reality. Before his MS became so progressive, the rhythm of our lives was moving along, flowing with the usual ups and downs, sometimes riding high on a wave of happiness but often feeling the plummet as the wave crashed down again and new symptoms emerged. Up and down like the ocean currents, in and out, requiring us to develop a new “normal” to the rhythm of our lives.
What is a normal rhythm anyway? For us, it’s taking each day as it comes, each moment as a blessing of time God has granted us to be together and with our family. As the ebb and flow of the disease take control of our lives, we adjust to a new normal, a new way of adapting, a new rhythm of life.
Standing here, I pray for strength and mercy. I pray for wisdom for his healthcare team. I pray that they will not see him as a diagnosis but as a person with his own needs, his own hopes, and dreams. I appreciate them letting me be part of his healthcare team, for them allowing me to be his advocate, and for them listening to me … because I know him best. I know the subtle changes; I recognize a difference in rhythm, color, or sound that means improvement or decline.
And I continue to wait and watch.
The doctors, nurses, therapists, and many more come and go. They warn me the next thirty minutes will decide; does he go on a respirator, or is he stabilizing? If he goes on the respirator, he may never come off; his lungs are just too weak. So I wait…and watch…and pray.
Do I notice a change? Is the rhythm of his breathing less erratic, somehow less labored?
The medical team comes in and draws yet another tube of blood. They come back smiling, “It worked. His gases have improved. Let’s see if he continues on this path. Maybe we can avoid the ventilator after all.”
I say a prayer of thanksgiving. My fear that this was the beginning of the end of the beginning of a lifetime on a ventilator is fading away. The rhythm of my heartbeat slows to match the rhythm of his breathing and once again, the normal of our lives change and we move on to the rhythm of a new normal in living with this life sentence of MS.
