Mermaid

Before it slips my mind, once again, I wanted to put a thank you in here to all the people who sent me cards and messages when Joel and then my Dad, died.  I hope, now, that those who did will manage to read this particular blog, and know how much I did appreciate it.  I know that some felt it was such a small gesture, I no longer have my boy, and they felt a card really was a very feeble response to that. 

It really did mean something to me, though.  Every day, for a month or more, I would get the mail and there would be one or two cards from people, saying they were praying, saying they cared.  It was an acknowledgement that something had happened, that a beautiful and precious person had left my grasp.  It is hard to explain how that helped me, but it did.  It did somehow help, somehow mean something important  to me, all that acknowledgement that a excruciating loss had occurred to my heart.

So thank you to all the aunts and uncles, all the cousins, all the friends of my immediate family and friends of my family-in-law, my good friends, church family, old small group, friends distant in time or place, medical staff and others who worked with Joel (these ones really did touch me), members of my online support group (who bring a special understanding) and any and all other miscellaneous people who send a card.  If you send a card, I read it, with tears, and I am thankful.  Just so you know.

Awhile back I read a research article that was sent to me by the lovely lady who published it.  The article is called "Living in a World Without Closure: Reality for Parents Who Have Experienced the Death of a Child."  I read the article several times over.  Because it was a study of a group of parents whose child had died, and how they view that event and their grief process.  So you might say it was of personal interest to me.

I suppose the word we use for it would be "validation."  An explanation of what I think and feel about Joel and his death, that shows how normal and common my thoughts and feelings are.  The "you are not alone" and "it DOES make sense" sort of feeling.

The main point of the article was that parents who've lost a child do not feel that the oh so common emotional term "closure" applies to their experience, and do not even seek "closure."  Of course, it sort of depends what you define "closure" as.  The dictionary I have, not being up on current psych lingo, says "closed state."  Which pretty much sums up what I think the other parents, and myself, reject about the idea of some sort of "closure" to the experience of the death of our children.

Because, you see, I'm never going to be in a "closed state" in my emotional relationship to my child.  I can't.  I wasn't programmed that way.  I feel this God-given drive, deep in my heart, to be a PARENT to my child.  There is no off switch to this drive.  It's not like the end of Joel's biological functions on earth send off an electromagnetic signal in my body that says "parental urges, disengage."

Let me say it more plainly and with less of the silly:  I love my boy and I always, always, will, and with that love is a need to be connect as a parent to him.  I can not be connected physically, of course.  But I remain connected emotionally and can not and do not wish to severe or come to a state that closes that connection for me.  I love him and will always love him.  And love is also a VERB.

My Dad read a poem for me at Joel's funeral.  He read it for me, because I was sure I'd never get through it without sobbing my guts out.  It was sent to me by a cousin, and it's somewhere on this blog.  It's called "The Cord."  It is really a poem about parental "unclosure," but calling it a "cord" really puts a better picture to it.

What my grieving process is NOT about, is dealing with my feelings, letting go of them and Joel, leaving it all in the "past" one day and "getting on" with my life.  My grieving process is about learning how to live with loving Joel when he is no longer physically here.  My grieving process is about learning to live with the longing to have him here, and channel that longing into positive things.  It is about learning where to put the love and how to show it, in good and healthy, and even God-pleasing, ways.

And oddly enough, the more I embrace this, and figure out how to let out the love, the more healing it is.  Of course, in continuing to love Joel, I must therefore continue to miss him and long for him.  So I know now, and am committed (I will not say resigned, it is an unwilling word, and I am not unwilling) to living with the constant of sadness, of some sorrow.

I am OK with that.  It is, after all, only sorrow.  It is a price I will gladly pay for the privilege of what I have gained and will gain.  I will take sadness with me into the future, but I will also be taking Joel.  I'd rather take Joel, with the sadness, then leave both behind me.

And, with God's help, and the help of friends and family, I will learn and be able to channel that sorrow and that love into good and healing places.  It will be life-long.  And it will be worth it. 



It makes me think of one of my favorite fairy tales, "The Little Mermaid."  But not the Disney version.  The real version.  Just the part where the mermaid purchases legs so that she can be with her prince.  One of the conditions of having legs, is that every moment she steps, she feels pain like knives in her feet.

So she can be with her prince, even dance with him, but one of the prices is the pain she feels in every step.  And yet, she gladly pays this price.

I understand that little mermaid, as fictitious as she is.  Because I too will feel pain at just about every step in life.  But you know, sometimes having legs and dancing is worth it.  Specially when you get to bring along your prince.

Camping.

We just got back from two days of camping.  It was a great time.  And then I spent most of the hour drive back crying.  Silently, so Caeden wouldn't notice.

I wasn't crying because I felt bad about having a good time without Joel (Joel is, after all, having a much better time than I am right now).  I wasn't crying because I felt guilty for having a good time, and NOT crying for two whole days.

I cried because I had two days worth of tears stored up.  Each day, there are tears for Joel.  They have only one place to go, and that is out.  Sooner or later.

And I cried because though I had such a good time, I no longer have Joel to come back too.  I cried because I so much wanted to be coming home to him, but he is not here.

Used to be, after time out with respite, I'd be eager to get home.  I couldn't wait to get in and see my boy.  I miss holding him so much.  I cried because I wouldn't be able to get home and hold him to make up for the two day lack.  I wouldn't be able to kiss the little palms of his hands as I used to.  Or kiss the bridge of his nose and his temple.  Or hear his little coos and sounds.  I just miss him so much.

As usual, it took me by surprise, the sudden need for such strong (but silent) crying.  I felt sad about my Dad quite a bit on the camping trip.  Guess I put the Joel-sadness to the side.  It makes sense, I suppose.  I can't really avoid the sorrow.  Like bills, it piles up, and accumulates interest or late penalties that must, eventually, be paid.  I don't really mind...I mean, the payment is just evidence of the priceless worth of having had Joel, and loving him so much.  It hurts a lot, but better that then being emotionless...

And through these and other tears, realizing that when I'm smiling or laughing or having fun or enjoying myself, I'm not really forgetting Joel at all.  My feelings are not shallow... the sorrow is there, and it is deep and profound.  It's just a break, and it is OK for me to take one, and I'll make up for it later by feeling it all the more strongly.

But I didn't mean to go on and on about that.  I was intending to write about something really good coming up.  Steve and Caeden and I are all set to head out to Omaha,  Nebraska in a short while for a PBD conference.  It is a conference put on by The Global Foundation for Peroxisomal Disorders (you can see a link on the left side of my blog) and it is for families affected by PBD's.

I am very, very excited about going.  Maybe too excited.  I'm also a bit worked that my expectations are too high and that I'm going to feel disappointed.  Because I have been looking forward to going to this conference very, very much, and for a long time.  I will get to see some dear friends, meeting some in person for the first time, and others that I met just over two years ago at another PBD conference put on by a different organization.

There will be several families attending who have already lost their child/ren with a PBD.  There is a whole morning session specially planned out for us (and other interested families) on grief and grieving.  I can not wait to be with these people who understand it all too well.

And there will be lots of children who have a PBD, and then maybe some of my friends will be kind enough to let me love on them for a bit, even if it makes me cry.  Because, of course, it will feel just a little bit like Joel.  And the love I give them will be some of the love I would have given Joel.  And it will hurt, but it will be a good, good kind of hurt.  Yes, hurt is a synonym for pain, but not all pain is bad.

And, I believe I heard it from another friend, that sometimes we need to be a bit intentional about our grieving... it keeps us honest and keeps us from doing too much avoiding and getting blind-sided later.  It's OK to go camping and forget about sadness for a couple of days.   It might not be so healthy or good to do that for two months.  Not to mention that if you are going to be intentional about grieving, then it is great to have the hand of a fellow traveller while you are about it. 

So, I don't know if I'll blog much between now and then, or for awhile, but I will try and get some more written before we head off.  It is hard for me, at times.  I don't like to sit down and write and write and write it all over and over again, the same thing as I did today.  You know what I mean: 

"It's sunny today, and I miss Joel."  "Today we went shopping, and I miss Joel."  "Meatloaf for dinner, and I miss Joel."  "Have a toothache, and I miss Joel."  Watched Survivor, and I miss Joel..."

You know what I mean?  So sometimes it's hard for me to write, because the above paragraph pretty much sums up the constant refrain of my life.  Yup.  Refrain.  That's the right word for it.  Each day it's a new verse to the song, but the refrain is the same, the bass notes under the melody.

Maybe I'll have to get all crazy and poetical.  Write some bad poetry, but at least it might be more interesting than two paragraphs above here.

For now, yes, I am going to put up MORE pictures of Joel's Garden.  It keeps changing, but it is always beautiful...  And the rosebush was really blooming last time, so I gotta put that up here.

Regret-longings

I feel that I should be writing in this blog.  At the same time, my thoughts have been going a MILLION different directions.  Seriously.  Processing what happened in the last three weeks, thinking about my Dad's last days here.  Thinking about the future without him.  Thinking about what life will be for my mom.  Thinking about what life will/should be now for me.  Thinking about Caeden, what he has lost, and how good a sibling would be for him.  And us.  Maybe?  Thinking about two funerals.  Processing Joel's last days here.  Processing Joel's almost three years of life.  Thoughts and feelings about God.  About heaven, death, the meaning and "purpose" of pain.  You see.  And I feel sometimes that a lot of it is "re-thinking" so it's likely stuff I've already written about. 

I can say that in the last couple of days, I have once again been feeling those regretful feelings.  But I'm not longer even sure that it's correct to call them regrets...  They are longings.  Really.  Longings couched in regret-terms. 

I've been feeling "I wish I had held Joel more,"  and most especially "I wish I had played with him and sang to him more."  The truth is, though, that I really have NO IDEA how much I did or did not sing and play with him...  I mean, I know that I did both of those things.  I have memories of doing that.  But obviously I can only actually get the mental picture of doing this several times.  I can not possibly mentally view ALL the times I did this.  I did not, of course, record the hours and minutes I spent doing this.  And so, really, I have no idea of the quantity of time... it's impossible to get that information, because life with Joel was so up and down that weeks went by when I was virtually unable to play with him or even sing to him. 

And then, of course, there were times when I could do that every day.  There is no way for me to now evaluate if I did this "enough" or not, because I can't even get the data to try to decide something like this.  (and neither can you, by the way.  How can I trust YOUR data on this, when you have even less than I do?)

So, I really can't get a grasp on how much playing and singing I really DID do.  Unfortunately, along with remembering times I did this, I can remember times I did not do this.  These times pain me.  I know there were reasons.  Joel was sleeping most of the day.  Joel was not "feeling playful."  And then, at times, I was not "feeling playful."  What I mean is that in the good times, I could recover my "moxy" (or whatever you want to call it) enough to sing songs with playful motions, instead of just lullabies, or get out Joel's light box and see if he could focus on the spinner, or massage him with lotion...etc.  But often after a hospital stay or nasty bout of "irritability" or whatever, it might take a few days or even weeks for me to get up the courage to "try again," as it were, with the more stimulating activities, instead of just comfort care.

I forgive myself for that.  Because those times, I just really COULDN'T do it.  I know that all the down turns just kept happening so quickly for me.  The short time of progress for his body was just so short.  The regressions just started so soon...  I don't even know the words to explain it.  Just how incredibly hard those constant and steep steps down were.  Just grab the railing and keep moving your feet so you don't start tumbling head over heels.

So, the pertinent points are that I really have no idea exactly how much of the time available for singing and playing was used for singing and playing.  And how much of any "lost" time I really just couldn't do more than hold him or rock him, or whatever and let that go and forgive myself would be the best idea here.

But I strongly suspect that what are disguised as regrets are really just longings.  I say "I wish I had played with him more," because I just so much wish that right now I could play with him.  And so I remember a moment that I DID play with him, and wish I could go back and experience again.  And then I think, why isn't there a never-ending supply of those memories of playing with him?  Oh, if only I had played with him MORE!  When really, I suspect that: 1. my faulty memory can not extract them from the hidden depths of my brain, and 2. there would never be enough because they are limited, and what I really wish is for them to be current and ongoing.

I know I have written about this before.  Sorry, this really isn't so much for you (unless you too are dealing with regrets), this is for me.  Because this is how I feel, and how I have to work it through when I am hit by a "regret-time" in the grief process.  Yeah.

So, changing the topic completely, here is the latest "series" of photos of my Joel-Garden front flower bed.  :)

My Addiction.

Ha ha, bet that got your attention.  Hope you are not too disappointed to find out that this is not some deep dark secret.  Nor some serious discussion.  Sorry.  But, here you have it, MORE pictures...  :)    I just can't seem to stop myself.

So, I'm going to put up the previous pic of Joel's name in my flower bed, and then the "after" pic so that you can see how it has changed.  Yeah, and then I will just put up a bunch of pictures of pretty flowers.  Including some recent ones of Joel's grave.

BEFORE:

AFTER:

Actually, his name looks even better today, so I might need to go out and take another picture, yet again!

And here are some pics of his Garden at the cemetary.  Taken a couple of days after my Dad's funeral.

One of these days I'm going to sit down once again and write a "real" blog.  Today is not that day.  :)

Today I'm going out to "weed wack" the yard.  I might finish a book I started.  And it really is time I made appointments for us.  Eye appointments and yearly check up appointments (haven't done that since Joel was born!).  And getting our income tax done, that would be a good idea.  We are going to take Caeden to Tinker Town one day soon.  And we have purchased a tent, so I hope we get out camping ASAP.  Summer stuff.

Thanks everyone, for your love and support in these last months especially.  I have great doubts that much of it has "sunk in" as they say.  I do not know what the next weeks will be like.  And that is about all I know, at this time.  Other than the most important fact that when I get to a day in the future, God is there ahead of me.