This weekend we tackled the contents of the medicine cupboard. We’ve both been avoiding doing this as it is one of those places where such a lot of memories lurk. Being confronted by Master L Vercuil on label after label, finding his spare PEG - even finding the first positive pregnancy test. 5 March 2005 - a day of such joy.
I don’t do medicine well anyway. It pushes every wrong button I possess.
“Chuck it away. Just chuck it away. We don’t need it!” I gritted on a number of occasions, while Dirk was trying to see the expiry date before making a decision. The hated Phenobarbitone landed in the disposal bin. I saw it go with venom. It really had had no good effects on him. The Zantac that he had to get 0.003ml of, for heaven’s sake, was also chucked.
At least we dealt with one ghost.
The pain medication prescribed to him just before he died was a highly scheduled medicine and, even used correctly, had the ability to repress respiration. Used incorrectly, it would have been lethal. He really needed it, though. I was too afraid to check how much of it remained in the bottle, but unreasonable and unfounded fears remained at the back of my mind. I know that I personally only gave it to him on three occasions (not on the day he died), using the prescribed two drops. Anna had strict instructions to phone me if she thought there was a need to give it to him. So, most of it should have been left. Dirk and I measured it off into a measuring cup and found to our relief that the bottle would have been almost full. His death remains a mystery, but at least nobody was directly responsible. Closure to some extent. One less thing to haunt me at night and taint relationships and memories. I’m so sorry for even thinking it.
We kept some of the syringes. Everything concerned with his suctioning machine we found incredibly hard to get rid of. We’ve been approached by people to sell it, but I’ve not been able to. I’ve come to see it as an extension of Loren.
I couldn’t help thinking that Loren was pure joy. That day I had the positive pregnancy test was a prediction of the little boy that was to follow. The hard part was the compromise. Giving him things I knew to be bad for him in the long run. Doing things to him that I knew must have been unpleasant if not painful. All in an effort to keep him alive. Interventions cascading into more interventions.
I wish I had the knowledge I possessed at the end of his life right at the beginning. Stopping the first unnecessary interventions. Choosing wisely. Doing the therapies I now know would have benefited him more right from the start. Not listening to stupid advice coming from people who knew nothing and didn’t care enough anyway. Or who felt as helpless as I did. But life doesn’t work that way, does it? And dwelling on it is pointless.
Last night Marco was entertaining Magnus while Dirk and I were trying to unpack the groceries and getting supper ready.
At one point Magnus was laughing so hard that I was laughing with both of them. As I settled Marco with his supper, I said, “Thank you for being such a kind big brother. Magnus thinks you’re the best big brother in the whole world, just like Loren did.”
And Marco traced the edge of his plate with his finger absentmindedly, completely silent. Then he said quietly, “Yes, my Loren. I touched Loren’s nose like this.”
He’s so small, he will likely forget most things. And once again I’m not sure of how much I should remind him. There’s no handbook and even if there was, I now know nobody really knows the answers. But I want him to remember one thing. The one thing that could never hurt him. The one thing that should never be a compromise.
Love.
8 responses so far ↓
weeskindgered // April 15, 2008 at 1:24 pm
Hi There
I just wanted you to know that there is absolutely nothing wrong with keeping something of a loved one that you lost.
I kept some clothing of my beloved mother upto 10 years after she died, before I got the courage to just chuck it away.
Even though Marco were still young when everything happened, I believe that he would remember the best times with Loren, children have enormously good memory for their age.
You would be in my thoughts on the 26 April.
Lovies
Me
Jodi // April 15, 2008 at 2:19 pm
Nelba,
Beautiful! …as usual. You are such a talented writer.
Mel // April 15, 2008 at 8:18 pm
Thank you… I loved this!
Katy // April 15, 2008 at 10:06 pm
You know. I have a friend and her mother had two miscarriages rather late in her pregnancies–she had an undiscovered issue with her cervix. Anyway, my friends never knew these babies, but she has always felt that she lost two brothers. There is no telling how a child will feel about a lost sibling–I suspect that the parent’s set the tone.
You know, people HATE phenobarb so much, but we just love it for Charlie. We have no negative side effects. We are fortunate, though, that he takes only three medicines. By the time he’s three, we’re hoping he doesn’t take more than one!
I threw all things related to Charlie’s feeding tube away with glee. I hated that thing.
Mel Francis // April 15, 2008 at 10:43 pm
You have done a very difficult thing, every little thing holds memories, you both have done so well in facing a task like that. I’m sure that it is a very big step forward.
As for Marco, he is a very special boy who has learnt far more about life and love than most people in their adulthood. His love for Loren will never fade, but as you say, his memories will. I think the most important thing is to talk about Loren and share memories when he wants to. My mum lost her sister Sue, to a terrible accident when Sue was 10 and my mum, 7. Sue was never mentioned again….. something that still hurts my mum greatly to this day. All that she is left with is her own faded memories.
I know I was a lot older when Gary had his accident, I was 14, but I needed to have my memories and to be able to keep them clear by talking about them. Fortunately for me, having been through the loss of a sibling in childhood herself, my mum knew the importance of keeping those memories alive.
I don’t know if it was the fact that Gary was still alive or that I was still a child myself that made those memories and discussions so important to me, as now he is gone, and I am an adult, I find memories too painful to relive.
Love,
Mel
vygie // April 16, 2008 at 10:43 am
Nicci, I know that you must be missing your parents very much during this special time. As a parent I know that I won’t want to miss my daughter’s wedding day for anything. I know that there is no such thing as death. Maybe an existence on another level? (Not that we don’t miss them very much…)We call it heaven. I know that your mother will be there in spirit and that she’ll be glad with you.
Thanks Jodi. Coming from such an exceptional writer I appreciate the compliment all the more.
Thanks Mel!
Katy, thanks for telling me about your friend. I think it is important that miscarriages and stillbirths are acknowledged as the loss of a child. Especially as far as siblings are concerned. Neighbours of ours lost twins in their sixth month of gestation and they found people’s reaction very hard. Another friend lost a baby at nine weeks and it is just as much of an issue to her.
And I’m so with you about the darned feeding tube…
You’ll excuse me if I answer at length about the Phenobarb issue?
Phenobarb is one of the seizure medications with the least side effects, I was told. So, if it is a choice between that and something more potent and you have no issues with Phenobarb, I’d go for the Phenobarb.
My issue with it is that Loren didn’t show signs of seizure activity (even on two EEGs) after his first few days. It is often prescribed after brain damage to try and limit further damage while the brain settles. But I saw no logic in continuing on the max dose (10 mg twice a day – which I now see is the dosage used when an infant is experiencing a seizure!) for the rest of his life – as we were told he’d have to. He basically just slept, was unresponsive and had huge digestive issues on it. I felt that a child with already compromised neural activity didn’t need further inhibition. We weaned him off it after four months – also after a neurologist just lifted his eyebrows at the dosage - and he was a totally different child. The hospital where he was in NICU had limited experience with CP and I suspect that they often interpreted abnormal movement due to CP as seizures.
That said, once again the medical model of understanding seizures differs completely from the alternative therapy point of view. The medical model sees them as always bad while that may be a half-truth. Yes some seizures are bad. Some seizures influence quality of life. Others don’t. You have to constantly weigh your options. There are other ways to deal with seizures such as diet, biomechanical rehabilitation and cell therapies. I’ve noticed that kids prone to seizure activity often display them when they have an infection elsewhere. Sometimes a seizure is the very first warning sign of a chest infection. I’ve had people report that their kids would have a period of seizures followed by a rapid development spurt. I know children who suffer from infantile spasms where the parents decided that medication does not help anyway and that the side effects of the medication are far worse than their benefits. They keep emergency medication on hand but they deal with the seizures in other ways.
Sometimes seizures are side effects of seizure medication….it’s just such a hard choice sometimes.
Very soon Loren was on no chronic medication at all. I used homeopathy when needed and herbal immune system boosting medication on him and it was the happiest and healthiest part of his life. If you can get Charlie to that point it would be wonderful. In your favour at the moment is that you are heading into summer with less respiratory and other illnesses anyway.
Oh, Mel, I appreciate your comment as a sister who has experienced the loss of a brother she loved so and the story of your mother’s experience. Reliving memories may become easier with time. But I think everyone needs to take this at their own pace. Maybe we were forcing ourselves before we were truly ready, because of the move?
And you make a very important point namely that sudden disability such as with a traumatic brain injury also involves a memory of a loved one before the injury. That there is mourning with that too. Our loyalty towards and gratitude to have our loved ones still with us mean that we often do not adequately deal with that mourning. There is the loss of the lives we lead before and though we would spend our last minute caring for our loved ones nobody pretends it is always easy.
I find that, these days, I mourn Loren’s birth again. Not with the deep sense of guilt and shame I did before but with an acknowledgement that it happened and that I’m so sad it turned out so contrary to my expectations and my hopes and my beliefs. Added to that is the knowledge that all my children’s births were mixtures of bitter and sweet. I sense that Dirk currently has an issue with this again too and there’s renewed anger aimed at me. I don’t blame him, but I do hope that we can return to peace again.
As an adult I look back on our time with Loren and realize that there were good and bad memories. Even with the bad times, I’d want him back if I had the choice, but that is beside the point. Children as small as Marco might only remember flashes with no logical pattern or balanced distribution between good and bad. Marco is a dreamer, a child who experiences life through words, stories. I could use (abuse) that to make him remember a saccharine version of reality which conflicts with his hidden memories. I don’t want to do that. But I still believe that being positive is far better than being negative. Maybe as you suggested I should take my cues from Marco? Tell him the truths he can handle as he requests them. Something I will always do is to stress that his brother loved him and that both of them were wanted and loved by us.
moreena // May 3, 2008 at 5:02 am
Ahhhhh. I am weeping uncontrollably at my keyboard. The other day Frankie came downstairs and was pressing me to tell her who I loved most in our family. I gave the standard answer of “I love you all in different ways, but I can’t say I love one of you the most! It doesn’t work that way!”
And Frankie said, “Well, it works that way for me. I love Anni the best!”
And all I could think was, “Good God, please keep Anni safe!” I was really panicking, realizing how fragile it all was.
But you helped me remember what a gift this love is.
I have to go weep some more now.
vygie // May 4, 2008 at 10:12 pm
Moreena, the more I observe children, the more I realize that they seem to be able to live in the moment much more than we do.
Your girls are beautiful. Thank you for sharing them with us.
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