My 6 year old son, E, suffered a brain injury at birth. Due to this injury, he has cerebral palsy with epilepsy, blindness, serious developmental delays and a host of other medical problems. He’s very susceptible to respiratory infections. I wrote about him in “Living with Dying” for Segullah several months ago. For the past couple of years, he has been relatively healthy – no major infections or hospitalizations. It has been a blessing as we have been able to have two other normal, healthy boys – P is 3 and Z is 1.
Sadly, in the past 6 months E has had two major hospitalizations lasting two weeks each due to serious respiratory infections (RSV and Influenza, both with accompanying pneumonia). The first was in February lasting into March and the second was in June. He also had bronchitis in April, but we were able to keep him out of the hospital. Both times he has been sick, I have had to split my time between home and the hospital, feeling torn and guilty in both locations because I am not able to be with all of my children in either place. I either leave the very sick child in the hospital alone or I leave my two healthy little ones with friends for the bulk of the day.
Worse than the guilt has been the overriding feeling that E is slowly deteriorating, and that each new respiratory infection may be his last. During his first hospitalization, I had some very distinct spiritual impressions that he would die very soon, and I was surprised that he overcame the infection and was able to come home.
During our month of reprieve in May, I again had many strong impressions that we needed to make E’s funeral arrangements. Over and over, the impression crowded into my conscious thoughts, and when I could no longer ignore it, I started researching funeral home costs. I contacted several companies to do cost comparisons to find the most budget-friendly company, ignoring the horrifying thought that I was pricing funerals for my child who may soon die. I tried to think of it as shopping around for insurance or for a mortgage quote – just business to be taken care of. We finally settled on a company and made an appointment to get E’s affairs in order. We spent a couple of agonizing hours choosing plans, making decisions about the viewing and the funeral, choosing a casket and flowers, knowing that these choices would be all the more agonizing after his death.
We also chose the cemetery plot, again fighting the appalling realization that this spot of ground that we had chosen would be the place that we would visit after he died. I also talked to my Relief Society President, who is also my close friend, about how I wanted the funeral at the church to be, and let people know that I wanted them to speak at his funeral. Plans were made, arrangements were in place, and a sense of peace settled over me. “If ye are prepared, ye shall not fear.”
When he came down with his second serious infection in June, I was ready for him to die. One day things were not looking good for him – his oxygen saturations were low, his breathing was shallow and rapid, and the doctor told me that he was at the point where we would need to put him on a breathing machine. My husband and I had made the decision long ago not to do this, so we knew that this might be the end. Again, I had the distinct spiritual impression that he would die very soon. I braced myself and waited for the phone call from the hospital saying that he was in the final stages. I imagined the influx of family and friends for the funeral. I wondered how I would arrange to have someone take over my teaching responsibilities for me. I pondered on how I would explain to my 3 year old that his big brother was not going to be living in our home anymore.
The next day, I walked into his hospital room to see him laughing and smiling and doing better than he’d done in days. I had a confused tangle of emotions – happiness that he was better, but angry and frustrated at the same time – I had felt very strong impressions that he would die, I emotionally prepared myself for his death, I had made all the physical preparations necessary for him to go. I was ready. Apparently he was not.
He is home now with a nurse 12 hours a day who can see to his medical needs while I care for my other two little ones. Over and over I question the impressions that I had. Was it the Spirit telling me to be ready or was it wishful thinking on my part to have this trial end and my son’s suffering eased? Why would I have such powerful impressions if his death was not imminent? How long will this go on?
So again, I wait. Every morning I wake up and wonder if E has died in the night…