Yes, cemetery-land. That's where I've been the last few weeks, trying to find a burial plot to purchase for Joel. If this conversation is going to bother you, you might want to stop reading here. I'm annoyed, and when I'm annoyed, I'm even more blunt that usual. So I'm going to be very blunt. You have been warned. Anyway, it is a very unpleasant task, to be sure, buying a burial plot, one I will be so relieved to finally be done with.
So, it's no surprise that I have some gripes about how things are here in the world of purchasing a plot. I think I have already mentioned my annoyance that websites usually don't even list prices so that you have to call them. And yes, as I suspected, that is so that you have to listen to the sales pitch of why THEIR cemetery is a great place to leave your loved one, why the price you are paying is buying you something that is worth it all. UUUUUUUUGGGGGGGH.
I spoke to a very nice lady today, whose name I shall leave out as the city I live in is more like a small town, and someone who reads this might actually know her. So I will say that she was very nice, and I think she was even sincere in saying she was sorry that my son has a terminal illness. She did, at least, wait until she called me back to go into the REAL sales pitch.
I didn't cry. Not once in either conversation. There was a moment when I thought I might be losing my tough and matter of fact edge, but I fought it off. I remained dispassionate and calm and, yup, very matter of fact. Show no weakness. Really, I was more being smart than trying to be tough. Because I knew that if I showed a lot of sadness and pain, she'd be really kind and sympathetic. And that would make it even harder if she then later tried pressure me into something. Like we had some sort of bond. And I refused to let my grief for Joel put me at a disadvantage. I was too angry about it to let down my guard.
The prices for small children were mostly reasonable. Of course, she kept trying to sell me two extra plots, one for Steve and one for me. Those plots were a lot more expensive, let me tell you. She told me that in this way, we could all share the plots. Joel could be buried at our heads, and be under the memorial stone, and then Steve and I side by side. Which sounds really sweet. Of course, if, let's say ten or fifteen years from now, we need to move for any reason, we'd be screwed. Who'd want to buy our two very expensive burial plots that, oh yeah, have a wee babe laid to rest under the memorial stone?? We'd never resell them and we'd have paid almost four times the price as a single children's plot. Heck, buying ahead is a great idea, but isn't buying THAT far head (HOPEFULLY) sort of overdoing the planning for the future?
Anyway, I was annoyed that she tried to sell me plots for Steve and I about three times, even though I told her right away that was just an expense we could not put out at this time.
Then I was annoyed because she tried to sell my dad, through me (because I stupidly told her she could give me the prices in case HE was interested) burial plots.
She made sure to tell me how they put 30% into perpetual maintenance and so I didn't have to worry that they would go the way of some places that went under and now tall, tall grass and weeds cover the graves. (She even NAMED a cemetery in the city where that had happened.) I didn't have to worry that in a hundred years time the grave would be neglected, the company would be going strong and keeping a beautiful place where I, or Joel, could be remember for all eternity, ad nauseam.
Look, nice lady, I actually TOTALLY don't care about 100 years from now. By that time even Caeden won't be coming to visit our graves, and if you think that I believe for one moment that my great, great grandchildren are going to come to my graveside and think what a prodigious line they came from, guess again. Hello, I'm not Joan of Arc, and Steve is not Lennon.
I'm really not worrying about people "keeping me alive" in their memory here on earth. I hope to meet the people I love face to face and BE ALIVE to their faces one day after the resurrection. But I didn't say all that to her. I was silently annoyed, because I felt she was capitalizing on the fears and hopes of people who really want their lives to matter and are afraid that if they don't have a beautiful grave kept for them for over a century, it will mean that they were forgotten, and thus never mattered.
And while I am sure that this company is terrific company, and yes, really, the cemetery is beautiful, as far as cemeteries go, it greatly annoyed me that she tried to explain the hefty sum for the very expensive grave liner by ..... telling me that with a cheap grave liner that didn't go over top of the coffin, it was likely that the backhoe that filled in the grave would cause the coffin to break open with the force of filling the hole. Yeah.... Ok, first of all, IF such a thing truly does happen, I would NEVER have known about it, BUT for her mentioning it.
Of course, she also took that opportunity to mention that the fancier grave liner would keep the coffin in better shape. Dryer and all that sort of thing. I confess I sort of tuned her out by this point.
Because am I ever going to DIG UP my Joel?? Yeah, that is not in the plans. I just want a nice little spot to lay the "clothes" he wore on earth in and come back now and then to think about him a bit and remember. But I will have no interest in those remains once they are laid in there. I'm not an ancient Egyptian, and I don't need to picture a mummy down there. I'm just fine with his body going the way of nature, and that is what is going to happen to it, no matter how many chemicals they pump into it. I mean, there is a reason that we bury a body, instead of "fossilizing" it and keeping it for ever in our living room.
When it comes to Joel's body, or "earthy remains" if you will, I sort of have the same sort of feelings as I do for a favorite shirt. I love that little body. I think it is beautiful. But what is really important is what is INSIDE of it. Once the spirit is gone, it will be nothing more than a worn out shirt. Thread bare and full of holes.
I have had many a favorite shirt in my day. And I confess, I do sort of form an attachment, even to a shirt. And when the day comes that it is so worn it can not be used for charity and must be disposed of, I confess that I don't like to throw it in the "kitchen" garbage. That garbage is stinky and has banana peels and bones and goodness knows what in it. It just feels disrespectful somehow. I mean, I loved that shirt. It's gotta go out in a nice, dry, office or bedroom garbage. You know? But the thought of trying to somehow preserve that shirt forever, put it under glass or bury it in a protective casing seems sort of silly? Because if I'm not in it, what is the point of the shirt??
And of course, I have a much, much greater attachment to my sweet little Joel's body. I can't stop pelting his cheeks with kisses. I love when his little fist wraps my finger in it. He has the cutest little curvy feet. I'd just hug and cuddle him all day if I could.
But what I really love and treasure is what the container holds. Otherwise I could just buy a nice, cuddly doll. But it is the precious little spirit inside that I am so deeply attached to. So, on one hand, I am attached to that little body. And I do want to have a nice feeling about how I disposed of it. I want to treat it in a way that shows I appreciated that it was the temple for a living being. Temple implies a sort of holiness. On the other hand, it's no longer needed. It is worn out and without the owner, it is useless. I just need a respectful good-bye. I don't need a lot of hoopla or people trying to scare me into buying expensive stuff by planting images in my head of coffin smashing back hoes or amazon jungle cemeteries. I just want a plot and a headstone!! Is that too much to ask??
"And after my skin is destroyed, this I know, that in my flesh I shall see God, whom I shall see for myself, and my eyes shall behold, and not another. How my heart yearns within me!" (Job 19:26&27)
Oh Karen...I can soooo relate to this post. My dear mother died young after a long illness...she was so pragmatic that she made all her own burial arrangments in advance to save my sister and I from just what you described in your post. BUT...alas....there is no escaping the "business of death". Once she died we had to have her transferred to a funeral home so they could make arrangments to have her cremated. She stated very clearly what she wanted...we were just following her requests. She would be cremated and then share a gravesite with her father and brother (all of which were purchased in 1967 when my uncle was killed in viet nam and they sold my grandparents not only his plot...but theirs too)...Anyway...we go to meet with the funeral director just to finalize her wishes and he is insistent we look at caskets....Huh? Why would she need a $2000 casket just to be put into an oven and burned up. She had requested the $75 cardboard box and if she was okay with that...so were we. Well...when we refused...he then insisted we see the cardboard box (a scare tactic I think)...so we looked at it...and both my sister and I said..."yep...that will do...."...I think he thought we were the worst kids ever trying to cut corners and save all the inheritance money for ourselves.....it just made us soooo mad and we could not get out of there fast enough....even though he was also then trying to move on to selling us these rediculously priced urns just so we could drop it in the ground...Nope...Mom had already chosen the practical brass box for about $100 bucks and it was ll paid for already...we would be happy to deliver it to the crematorium.
ReplyDeleteYou would think that the people who work in an indudstry based on loss and grief would be just a bit more tactful...but no...It is like they want to captilize on it instead. I think I will save my children the trouble and make all my own arrangements too so that they don't feel guilty and think that to spend a rediculous amount on something that is either burned up or dropped in the groud is a way of showing how much they love us. It is the soul that matters and we will all meet again in heaven and the body and the casket and the liner and the headstone will not have mattered....it just WONT! And...with the exception of yesterday (all soul's day...I'm catholic)....I don't visit the cemetery regularly....she lives on in my heart and my memories and staring at a gravestone is only something that came to be AFTER she died. I prefer to remember her alive...
So...be true to yourself and your Joel...do what you know is the right thing for you and your family and know that when the time does come, you will be at peace with your decisions and not pressured into anything from a "nice" yet pushy saleslady at a cemetery!
Hang in there. I know this is not easy.
Kd
How loathsome. My dad went through the same thing when my Grandma died. It's is disgusting how they try and use your love and grief for their own gain. Sure they're in the business, but pushing like a used car salesman after a no... good grief. Sorry you had to go through that. - Zac
ReplyDeleteOK. I feel this has to be said: I am a Registered Nurse and a Licensed Mortician. I too, am blunt with my words when I am passionate about something. It sounds to me that you are dwelling on the child's death instead of enjoying his life while he is here. I am very familiar with Zellweger's Syndrome and its effects on the body. Your child is beautiful and is obviously full of life at present. PRESENT. You are grieving, everyday a little at a time. This is good, everyone grieves, we need to, it's how we survive. Enjoy him. You have done such a wonderful job with him, he looks happy and loved. I know that my statements seem bold but early grief is a selfish act. In your mind you are throwing his meds down the drain and removing his playpen. We worry about things we have no control over and this consumes us. I do believe that "no one should ever have to bury their child." And, I feel for you. But your thought process worries me. I am not telling you how to feel. I can't imagine.
ReplyDeleteDear Anonymous Friend,
ReplyDeleteI know you meant well, but I am afraid that you have a few mistaken assumptions. You seem to think I do not enjoy Joel every single day. You seem to think that I am somehow cheating him of something, by my "early grieving." I am no more cheating him now, than I will be cheating my husband and other son by grieving after Joel dies. The grieving must be done. Do you think it will be better for Caeden and Steve if I just "wait" to be sad until Joel is gone? Or do you think I can swallow my sorrow indefinitely? Eventually, I will be sad. And someone will still have to live with me anyway.
Though I am often sad, I also laugh a lot. Joel is a happy boy, yes, and this is a happy home. Do not make the mistake of believing that sorrow and grief exclude joy and happiness.
And here is another thought for you. Are you so sure that my thoughts and feelings are not shared by many, many other parents with dying children? I have had a few friends admit to me that I have put things in my blog that they feel, but never share with others. Do you know why? They are afraid that people will give them advice on how to do something that they themselves have never done. They are afraid that people will be worried by their thought processes. Honesty, they themselves are often worried about their own thought processes, and the idea that anyone else would second that just about does them in. They are afraid to be so vulnerable. And rightly so. So they keep their grief very, very private.
I have a funny feeling that if you ever came across me in person, you'd never imagine I'm the person who writes this blog. I answer the phone with a cheery "Hello!" I smile and laugh. I think my friends would say that I am not constantly obsessing only with my son's illness, at least, I hope so.
Just keep in mind that I have been very, very honest in this blog. And remember that we all have thought processes that would worry other people if we shared em. It's nice we get to choose which ones we share.
The Author
Please do not feel that I am trying to deny you your grief. I respect your feelings and your free will to deeply describe them. It just sounded to me like you were dwelling in your grief. I have to say that I totally agree, what you are doing is so important. Everybody should be allowed to grieve anytime they feel. I was just concerned that yours was consuming you. I am so sure that you mistook my opinion for something it was not supposed to be...JUDGEMENTAL. Please know this, I am so glad you were chosen to be this angel's mom. Not that I would have any say otherwise. But this baby is alive and happy. Although he has his bad days, weeks etc..he is very lucky to have a mommy and daddy and big brother to love him and capable to love him. My best friend has a baby with Zellweger's Syndrome. He is sick alot. He suffers with respiratory issues mainly. I have told her many times that "God chose you." I am not sure I could ever go through what she does on a daily basis. Everyday the same routine. And because of her care and love, that baby is alive and very happy. He is a typical three year old at times with his yelling and the attitudes. Good for him. He shares his opinions as we are doing now. I am sure that everyday is a struggle. I witness this first hand. Please know that I would never try to minimize your pain.Please don't feel like the people who are responding to you could not possibly know what you are going through and that we have never witnessed the loss of a child:( Grief is personal and very important for us to feel. My thought is that you are doing it too soon... My thought, not yours. Thoughts and prayers..Anonymous nurse
ReplyDeleteDear Anonymous Nurse,
ReplyDeleteI myself did not use the word "judgemental." This is an interesting word, because if you look it up in the dictionary, it is merely the adjective form of a word which can mean "opinion." Over time this word has taken on a nuance of "malicious" or "harsh." I never felt your comments were malicious. I just felt that your opinion was mistaken and perhaps formed a bit hastily.
I'm glad your friend has a friend that will stick by her. I am very grateful for my friends, the ones who have stuck by me through it all.
I'm not sure I have the right sense of it, but I think one reason that you might find my blog musings here so strange is that is sounds like this little boy is much less "severe" that Joel is. I really never get to say that Joel is "typical" in any way, and at this point, I am hearing his babbling noises less and less, certianly I NEVER get anything that could be termed "yelling," though I'd be happy to hear it.
I am guessing your friend might be more in the place I was two years ago, when Joel was actually still developing, instead of going slowly and steadily downhill. If I had written a blog at that time, it would look very different than this one does right now. In fact, if you look at my blogs from a year ago, you will see a big difference even from now. Things were a lot different, even a year ago.
I hope you do not mind, your comments have made me think of all the other things that people have said, and that I have thought on this topic. I think I will write a blog about it all. You have inspired me to write something.
I do appreciate the people who read this blog. I'm glad there are "readers" who are willing to follow it, I always hope it will give them more understanding for the people in their own lives who are grieving, and I know the ones who read it are the sorts of people who do care and who will be supportive.
Has your friend ever joined the online support group? I have found lots of really good friends there, all with children with Zellweger's Spectrum disorders (Zellweger's Syndrome, NALD, & IRD). They are an invaluable source of information, and they are among my best friends. If she's never been aware of this support group, I'd be happy to pass the information on to her and she could check it out. Only if she's interested, of course.
The Author.
Shes very aware of all of the information, in fact she has done fund raisers and is one of the moms who send information to others like yourself. I think you are right,"We have met some wonderful and supportive people on these sites." I am greatful for your blogs, I continue to learn alot. Please do not feel as if I am not empathetic to your situation. When I go back and read my comment, I agree, my thought was in haste. I apologize for sounding angry or upset by your blog. My concern is with you. I wish I were there for you so that you could vent in person and not electronically. This is the type of person I am. I am curious and I hope that you don't mind me asking: "How do you explain this to your other son." I am curious as kids tend to deal with things better than adults sometimes. They bounce back better than adults, so to speak. I still say that your children are very lucky to have you. You seem very in tune with feelings and how to express them. My concern,as I have said before is how you, your son and husband are doing? Hope this is not too forward.
ReplyDelete