Living with Dying, Part II

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…

About Andrea R.

(Blog Team) is the proud mother of three sons aged 11, 8, and 6. She is currently working as a freelance science writer and blogger while preparing to apply for a PhD program in Science Education. In between working, managing her younger sons and her oldest son's medical needs, she likes to squeeze in a triathlon if she can. Also, her husband rocks.

18 thoughts on “Living with Dying, Part II

  1. A very close friend of mine went through this experience 17 times in the course of one winter.Her son did pass away eventually, but it was so difficult for her to go through steeling herself against the possibility so many times. When the time for separation came, her heart was at peace with it.

  2. Sometimes the Lord prepares us early enough so that when the time actually does come, we are prepared. I know that I’ve followed spiritual promptings in the past and didn’t see the reason for it at the time. Now, I am able to see that following those promptings at that time aided me in the future.

    Thank you for your candor and honesty. I know it can be difficult to share, but it has reminded me of my testimony of the plan of salvation. Thank goodness for the gospel of Jesus Christ and our knowledge that we can be with our loved ones again. I’ve had many people close to me die, including both my parents by the time I was 10. The sole comfort has been the plan of salvation. Continue to follow the Lord’s guidance and you will be blessed with His spirit and peace.

  3. When my mother-in-law’s kidney failed, I felt like she would die soon. I didn’t know when, and it was still hard when she passed. But I do think the Spirit prepared me to grieve early. My husband and father-in-law had been steeling themselves for her death for years, because of her chronic health problems. But I needed those extra promptings, I think.

    Thank you for sharing with such honesty.

  4. My mom suffered a major brain aneurysm rupture nearly three years ago now. She spent 15 days in a drug induced coma receiving treatment to heal her brain which caused her body to slowly deteriorate. We took her off of life supporting measures and allowed her to pass peacefully. The time in between the initial rupture and her passing granted us a space to mourn and adjust a little to what would have otherwise been an abrupt loss. I’m grateful for that measure of mercy extended to us by the Lord. Somehow it was just a little easier to let her go.

  5. I truly appreciate everyone’s comments thus far. It’s comforting to know that other people have passed through similar situations. I think what I’m struggling the most with right now is questioning the spiritual feelings I had. I keep going back and forth between feeling like YES, there was a definite message there, and NO, I was just exhausted mentally, emotionally, and spiritually and wanted it all to be over. I am OK with “thy will be done,” but part of me wants to scream, “JUST TELL ME WHAT IT IS!!!”

  6. Wow, Andrea. Wow. I’m adding my thanks to the others for your honesty and your willingness to share this.

  7. That is intense. Reminds me of those scriptures that say the coming of the Lord is “at the doors”. In God’s time, your son may well be going home “soon”. Unfortunately, we don’t get to have a peek at God’s clock. Nerve-wracking to be sure. I’ll be praying for you, as I’m sure many others are.

  8. Thank you for sharing your deepest feelings with us.

    It is a valuable understanding to have, insight into waiting for someone you love to pass over. It gives us an idea of how to serve someone in your situation.

    Most people are so afraid of death, shocked by its possibility that it can be difficult to understand the intimacy you feel with it. Don’t second guess your heart, don’t force yourself to assign ‘good’ or ‘bad’ to the feelings that flow through you. I’m sure when the time does come you will look back and realize that it happened at just the right time.

  9. Andrea, I once had an experience that is still part of the bedrock of my testimony, involving an overpowering rush of revelation and comfort that came during an afternoon when I wasn’t even thinking about the issue, and with a solution I not only hadn’t thought of, but would have rejected because it ran counter to the way I at that time assumed was the way God worked.

    When the experience was repeated a couple of years later, with the same rush of knowledge and surety, and especially of comfort, and when the next day events began to play out exactly as revealed, right down to an announcement by an acquaintance that I could not possibly have anticipated, I knew that my prayer of more than 30 years standing was within hours of fulfillment.

    Sooooo … that was 12 years ago, and it hasn’t come to pass. I am still convinced that both experiences were equally revelations from God, yet I can’t reconcile my absolute conviction of the reality of the revelation with the equal reality that it didn’t come to be.

    That of course isn’t an answer for you, but I hope it helps to know that someone recognizes the bewilderment or frustration or puzzlement or however you choose to characterize the gulf between your spiritual confirmation and its seeming non-fulfillment.

  10. Thanks again to everyone for their kind thoughts and prayers on our behalf. I also appreciate the experiences that you’ve shared with me. Thank you, Ardis — I guess the explanation for your and my experiences isn’t forthcoming, but it is comforting to know that someone else has experienced the same thing.

    Thanks to everyone at Segullah for allowing me to express myself in this way. It has been therapeutic for me to put my thoughts, experiences, and questions into writing. I think it has helped me to cope with them more effectively. I promise that all my posts won’t be cathartic rants on my current existential crisis. :)

  11. Maybe a priesthood blessing is in order for you. Go with the questions you’ve asked here in mind: “What am I supposed to do with these promptings I’ve been feeling?” “What do I do in the meantime?” “Are these feelings really coming from you?” Best of all, you will feel God’s love for you and most likely, the ‘peace that passes all understanding.’ That is my prayer for you.

    I have had times in my life where I felt prompted to do something, or times where I felt “premonitions” about things, and at the time didn’t know what to do with them or about them, but then, as time passed, most of them were resolved and made sense. But not all of them did. Maybe they will someday. Pray for peace above all.

    Thanks for sharing a glimpse into your journey with us. It’s good to be able to see beyond the smiling, happy faces of those sitting around us at church and realize that we all have real lives going on that we’re trying to live by the Spirit through the chaos, uncertainty, grief, disappointment, and changes of plans. I love that the internet gives us the space and anonymity (sp) that we need to be able to disclose much more personal feelings, struggles, doubt, and emotions than we are able to in face-to-face contact at church, while still having the Church in common. And forums like this have helped me realize that my ward must also be made up of lots of these kinds of real people, who also adjust their comments and how much they disclose at church about what their lives are really like and how they’re really feeling, usually to protect the others involved.

    You definitely didn’t need to apologize for using this forum for one of it’s purposes: to be able to admit your full self to people who don’t know you and your family, but can sympathize with you and offer support, and possibly inspiration, while still protecting the feelings of your family and those involved. That’s what we’re here for.

  12. Strollerblader — I did have a priesthood blessing with these issues in mind in conjunction with a healing blessing because I had a horrible sinus infection. The only answer I got was that “my suffering would be brief” — but it brought up more questions — was it my personal suffering with the sinus infection, was it our collective suffering over my son, was it his suffering, what is brief? So, I pray for peace and a strong back.

    I’ve reached the same realization that you have — that behind the smiling faces and service at church, there is sorrow hidden in many quiet hearts, and that everyone has something really crappy they are dealing with in their lives.

  13. I’m sure I cannot fathom the depth of your experience, but I do deeply respect your articulateness and the strength of your mothering.

    I learn three things when I have these deeply insightful personal revelatory experiences that do not culminate as I anticipate they will. 1. I have been touched by the power and compassion of God and moved by it and prepared by it. 2. My understandable and forgivable tendency to “see through a glass darkly” has once again caused me to see only part of the message and, in the process, jump to a specific interpretation or two that is not quite accurate. 3. That’s okay, because when a supremely divine and fully loving being who lives in a timeless state where all things are present touches the heart of a mortal being who lives in an imperfect world tied to a time continuum that’s to be expected. I am called in such times to a state of calm, loving preparation for all things that are and will be, all at the same time, just as He is. And I appreciate His help in coming a bit closer to such a state. And it is therefore a strength for now and for the future, however imperfectly I manage it.

    God bless you and your boys.

  14. I don’t have any experiences like this at all, and can’t even claim to have had many spiritual revelations, but I wanted to thank you for sharing your story. I agree that we never really know what people are struggling with.

    I can’t imagine how hard it must be for you to have to juggle all the needs of your three very different children. I am glad you shared this with us. I had a friend who had preemie twins a few years ago. One of the girls passed away at 7 months after being really sick for a long time. She echo’d many of the same feelings as you (how strange it was to make arrangements for a still living child…)…. My heart aches for you.

Comments are closed.