Originally Posted on | November 12, 2008
Since Bill has been going up the hospital at night, some of the bedtime routine for our oldest son, William has come into my care as of late. William enjoys “just one more song” and not so much because of my singing voice, but because I think he really likes the company and would rather not go to sleep right away. I also believe he has found some comfort in the hymns that we have been regularly singing as he picks the same requests over and over. One of his favorites is “O the Deep, Deep Love of Jesus”. He also likes “Amazing Grace”. They bring me great comfort as well and a sense of peace I never thought possible. One song that gives me great hope and peace is, “My Shepherd Will Supply My Need”. It goes like this:
My Shepherd will supply my need Jehovah is his name; in pastures fresh he makes me feed beside the living stream. He brings my wand’ring spirit back when I forsake his ways. He leads me for his mercy’s sake, in paths of truth and grace.
When I walk through the shades of death his presence is my stay, one word of thy supporting breath drives all my fears away. Thy hand, in sight of all my foes, doth still my table spread; my cup with blessings overflows, thine oil anoints my head.
The sure provisions of my God attend me all my days; O may thy house be my abode and all my work be praise. There would I find a settled rest, while others go and come, no more a stranger or a guest, but like a child at home.
Sunday afternoon was one of the most beautiful days I have ever seen. The sun was shining and the temperature was perfect. And it also happened to be the very first day outside our precious babe got to experience. It could not have been a better introduction to the glory of our God and His wonderful creation.We were able to stay out for about 10 minutes and then the nurses said it was time to take John back to his room. But it was a glorious time and so full of delight and wonder.
Today, we met with the team of doctors and talked over some very weighty matters regarding the life and care of our dear baby John. There are many complex details, but the main issues include John’s ongoing uncontrollable seizures. The fact that they cannot control them indicates a significant chance that John’s mental capabilities may be impaired to a devastating level and his life may be compromised—over time—with regard to breathing, pneumonia, or aspiration. The situation would likely get worse over time if the seizures continue. Though the neurologists have tried and will continue to try various medications to control the seizures, when he comes home, he will likely not be seizure free. That leaves many decisions to us and the doctors as to whether or not John should have an artificial airway put in his throat (tracheostomy), a gastrostomy or G or feeding tube placed in his stomach, a Nissen fundoplication (stomach surgery to keep him from having reflux), oxygen for breathing, monitors to check oxygen saturation levels and heart rate. The doctors discussed quality and dignity of life issues, something we have read or heard about, but never had to face on a personal level.
These are difficult times, but we know the Lord is in the midst of them, and we know beyond a shadow of a doubt that He is and will continue to be glorified in them.
We ask for your prayers for wisdom and clarity as we make these decisions.
We ask that the Holy Spirit will guide us and show us how we can glorify the God in every step we take.
We ask for peace that passes all understanding.
We thank you for your faithfulness to us. We thank you that you have wept with us, have prayed with us, have cared for our family in ways we could have never imagined. We thank you most of all that you have shown us the love of Christ in the very simple act of being there. Neither one of us has ever experienced the kind of community before that you have given us (Bill’s comment: Though we have come close. I am very much reminded now of the time when Kelly and I were dating and engaged, when the church basically carried us all the way to the altar. And also when William was born and baptized. I remember clearly how the life of that new covenant child was celebrated. The big difference between back then and today is that we pretty much knew everyone who was praying and celebrating with us back then—today, John’s life has reached out to more people than we could possibly know, or even imagine). And this is as much a blessing to God as it is to us. We know that the Lord numbers our days and if John’s days are 60 or 6,000, we know God is being glorified.
May the Peace of Christ be with each of you this evening and remember that God is good, all the time.