Sitting in My House, Naming My Peas.

I think that just about every second thought yesterday was about Joel.  I've missed him more in the last couple weeks than ever.  Hope's funeral brought everything back.  I felt like Joel had died that week... except that the week after Joel died didn't even feel like that.

I'm grateful that I don't wake up feeling depressed... yet anyway.  I'm glad that I don't feel hopeless or helpless (two common symptoms of clinical depression).  I am also glad that I can sleep well at night.  And that I don't (usually) feel worthless.

But I am tired a lot, which is a symptom of depression.  Or maybe just grief.  Being sad and missing someone can really take it out of you.  Don't get me wrong, I didn't think that after five months I'd miss my son LESS.  Five months is nothing, a snap of the fingers, a blink of the eye of time.  I just don't think I expected I'd be missing him more and more as time went on.

I put a poem up awhile back, "The Five Stages of Grief."  It's a great poem, and one of the things it says that I have heard in various ways other places, is that grief is a "circular staircase."  C.S. Lewis described it as a journey.  A journey, you don't double back or retrace your footsteps, but the terrain often repeats.  There are deserts and there are mountains.  Each time you go through the desert, it is a different one, there are differences and changes.  But it is still hot, dry, dusty.  Each mountain is different, might be rocky, might be shale, might have trees, might have cliffs.  But you find you are struggling UP.

There are just so very many places to go in grief.  It seems inexhaustible.  Well, I already know that in some ways it is, that my heart will not be done this journey until I find my home in heaven.  There is a comfort in knowing that I've sort of "finished" with certain things, or at least that when I next touch on the topic, there will be less of a sting.  But it is also important to acknowledge that I won't be done with this journey.  So that I can pace myself.  And accept the new reality.

I supposes it wouldn't totally be unlike walking into a kitchen to a mound of peas on a table and being asked to count the peas.  And you do, and all the peas on the table are counted and you push back from the table, only to have your hand taken and be led to the next room, full from top to bottom with peas.  And then you look down the hallway and see a number of doors, and underneath you can see little green bumps...  You might be thinking "that's a heck of a lot of peas to count."  It is. 

But this new house is yours, and the peas only get cleared out as you count em.  Your new life going to be lived with those peas for a long, long time.  You will have to work around them.  You will take breaks, rest, eat meals, sleep with those peas in your environment for a long, long time.  And for a long time those peas will really be "in your face."  Even as you slowly count off living spaces, you'll still be looking at them all around you.  For a long time, it will seem that most of your life is counting those peas.

And as the years go by and the piles lessen, the peas will interfere less and less with the business of living there.  They will be more in the background.  Still, at unexpected times you will open a cupboard or peer under a couch to a surprise mound of em, sitting there.  You'll find a couple rolled into your shoe.  In your laundry.  Years and years later.  Safe to say, you'll never really be totally rid of them. 

Oh my.  I don't even know if that analogy is really a good one.  As I have already said, I want Joel here in my heart.  If the "Men in Black" came by to wipe my memory, I'd bite and claw and kick, I'd fight with all my being to keep my memories.  I WANT to live in this house.  But man, it is a heck of a lot of peas, or tears, or whatever it is.  There are days when I'm fairly sick of peas, is all I'm saying.  I'm somewhat totally tired of counting them.

I hope you are not too tired of HEARING about them...  If you have to count em too, then you know how I feel.  If you don't have to count em, then I hope you are so grateful for that fact, that you don't feel impatient with hearing me talk about it.

Next blog I'm going to list some of the grief "places" I've gone in the last months.  It's not really for you.  It's more for me.  I think there might be something therapeutic in listing it out.  Seeing it all there in print.  Maybe I'll feel a sense of accomplishment, or a sense of relief.  See the roses with the thorns removed.

I suppose that could be another analogy for what is being done.  I'm living in a maze of very thorny rose bushes.  And each day I spend some time cutting the thorns off, so that I may enjoy the roses without the sting.  Every day, pokes and scratches, hands and arms smeared with blood.  But every day there is a bit more "rose memory" that I can grasp without hurting myself.

Well, no analogy is perfect.  They are limited, because they are only ways to explain it, they are not grief itself.  Still, writing about it does something for me.  There is some strength in NAMING things.  A sort of power is lost, or gained... It is hard to explain or define why this is.  But putting words to things has a special, for lack of a better word, magic.  In some special way, acknowledging things takes away some of their potency.  And in a sense, that is what I do in this blog.  I try, as best as I can in my flawed human state, to acknowledge the truth about things.

Jesus said the truth would set us free.  He also said HE was the Truth, capital T,  and I believe that He is the ultimate Truth, that acknowledging Him gives us the ultimate freedom.  But I think that the principle holds up in smaller things too.  It is the un-named sins that hold us still.  If we can not acknowledge them, we can never be rid of them.  It is the pains we never say out loud, even to ourselves, or more importantly, to God, that refuse to heal.  The truth is a powerful thing.  The Truth is a powerful Person.

Update.

Quite awhile ago, I told you about a mom I had met who lived right here in the same city I do, and who had two little girls who also had a rare, terminal, metabolic disorder, though not a PBD.  She has become a very special and important friend.  I do not really believe in coincidence, not in the "big things" anyway, and I do not think it was by any chance that we connected when we did.

If you missed the blog describing how we did meet, then I will say that we have been sharing the same pediatric palliative care team, and that I had given my blog address to our nurse to share with anyone she felt would like to read my blog.  One day she gave it to Jolene, and Jolene DID read my blog.  I followed her back to her own blog, we contacted each other, and an instant friendship was formed.

On the day that Joel died, I was paging the palliative care doctor at the funeral of Jolene's little girl Ashley.  Yes.  Ashley died only a week before Joel did.

And now, for those of you who do not regularly connect to her blog from mine to get an update, I have some very difficult and sad news.  Ashley's sister Hope has died.  She went to heaven yesterday morning.  You can check out Jolene's blog if you would like to see pictures of how sweet and beautiful she was here on earth.  I am so glad I got to get out for a visit last week, and I must have held her for over an hour.  I am so glad I didn't put off that visit, I would have been so sad not to get that last chance.

I thought it was hard to lose a son and a father within months, but now my friend has lost two children within half a year of each other.  I don't know the words to describe that kind of experience.  Of course, Jolene hates for people to feel sorry for her, and so you better not do that.  She has always felt that her two little girls were a special blessing.  But now she has to live with two empty spaces, and I have a small idea of how painful that will be.  So just remember her and her family in prayer...  Lots of prayer. 

Singing in the Car.

There is a continuing tension I feel in speaking to other people about how a relationship with God transforms my life experiences, particularly those relating to Joel.  Even when I type the previous sentence, I feel a part of it.  I just said I had a relationship with God.  If you are not familiar with this idea, it could sound nutty, arrogant, or self-righteous.  So as I started typing this paragraph, I had a wry smile on my face... Particularly because at times I AM nutty, arrogant, or even (gulp) self-righteous.

So, about this tension...sometimes people say that I must find that my religious views help me through the loss of Joel.  It's hard for me to know where to start with this.  Because at other times, I wonder if some of the things I say sound trite... like I'm being a good Sunday school attendee, so I know that the right answer is automatically "Jesus."

And when I write this, I smile at myself again.  Because that IS the trite answer that children quickly learn to shout out.  But then again, at the deepest level, don't I actually believe that "Jesus" is the answer to all "the big questions" of life?

OK, enough of this abstract stuff.  I want to be real and honest.  About this tension I feel.  Because I am sure that having God here, with me, changes everything about this journey aka "life."  But I'm sure it is misleading and highly inaccurate to give the impression that I have found, or believe that it somehow lessens the pain.   Or precludes certain experiences of the less than pleasant sort...

Still being abstract, I know, but this isn't easy to nail down...  Let me say I have heard a few people remark at times that they didn't feel someone was being totally and completely honest when they talked about God, difficulties or sorrows, and how those two elements related to their life.  That they spruced things up to be conventional.  That maybe they were giving answers they didn't completely believe themselves.  Or maybe more accurately, answers they felt were the right ones, the ones the Sunday School teacher wanted to hear, even if they didn't feel much conviction about it themselves.

And one of the things I have been wrestling with is what, exactly, the difference is, being in relationship with Jesus.  I'm disregarding the whole "truth" part of it right now.  I mean, I don't believe what I believe BECAUSE of what I think it can do for me.  You know what I mean.  Believe you can be ANYTHING and you can do it.  Therefore, believe you have a relationship with God and you WILL feel better.  This is NOT my mantra... I have a very "old-fashioned" relationship to the truth, things are true or they are not, imaginary friends are nice when you are child, but if I am playing some complicated game with myself where God is my imaginary friend because I think that makes my life better, well, that isn't intellectually viable to me.  I mean, I can't live that way.

So I believe in God's existence and in His personal nature because I am convinced it's true.  And I've not been questioning that...  What I have been mulling over is, does being convinced of this truth make a difference in experiencing grief...??  In how I cope???  In the person I am at my core..??

I can't come up with any real, straightforward and simple answers, in all honesty...  Because I do know people who live with out any real belief in God who seem to cope quite well.  Who seem to incorporate grief into their lives and make good out of it...  Who are as healthy and well-balanced as anyone.  And then I know of some who seem to have a very deep and abiding belief in God, and yet they struggle.  Life almost seems to have them by the neck at times...

Of course, part of the problem is how do any of us really know what the "best coping" looks like.   Or if holding on by our fingernails for awhile might not put us in better stead one day then seemingly coasting through...  And I can't really answer that when it comes to other people... I haven't lived long enough, I'm not wise enough, I haven't known enough people to detect these things.

I am unable to compare myself with others.  I really can't tell you.  And I suspect that it is unwise to do so in any case.  Here is what I can tell you though.  I can tell you about my experience on my son's birthday, and about my realization afterwards...  And then you can decide what you think about that.

We were headed out for a lovely pizza dinner at my friend Shannon's parents place.  It was Joel's birthday, the first one without him.  I don't know what that means for other parents, I only know that I had braced myself for a tough day.   So far, it had been O - K.   And we were driving out and it was about a 30 minute drive.  And I started to sing.  I WANTED to sing.  I do not even remember now what songs I was singing, but they were songs to God.  Praising songs.  And while I sang, I was filled with what I can only call "assurance."    I was going to say that God spoke to me.  But then, what did He say?  How do I know it wasn't just feelings?  No, I don't hear an audible voice, no there was no burning bush.  I'm not making that sort of claim.  Maybe "spoke" is the wrong word...  So that is why I say it was an assurance.  I was filled up with the sureness that God did love me, even though both my son and my father had died within months of each other.  And I was filled up with an assurance that one day it would make sense, and something beautiful would come out of it...

There were tough moments too that day, that week, and continuing on.  If you check what I wrote, you'll see I didn't feel any sort of impression that I was done with pain or sadness.  I didn't.  I just felt an assurance that God would be with me and that, yes, as I said, all will be well.

Later on, I thought about it.   It is so hard for me to explain on one hand how painful it is to miss my son.  It is so hard for me to explain that some days I just don't want to give to anyone else.  That sometimes I have no energy.  And that praying can be a battle.  AND that at the same time, I am sure that keeping God close does make this BETTER, even though I am not sure that the word "easier" applies.

And then the revelation  came to me.  I was thinking about how when Joel was alive, each day was hard, but each day had an incredible joy.  Every day I cried, but every day I laughed too, out of the joy of just being there with my son.  It didn't take away the pain.  It didn't mean I still didn't feel overwhelmed by doctors and medical procedures and seizure management.  Some days were very hard.  But every day I had such joy in being with my son.  I could not hold him in my arms without feeling the happiest rush of love, and with it, a great unquenchable joy that he was mine and he was with me.

So, I realized, it is with God.  I can't tell you that it isn't still very painful.  I still have to go through all the pain.  I still have to face the difficulties and frustrations.  But King David once wrote, in a Psalm "In YOUR presence is fullness of joy."  I find myself strangely happy in the midst of this tragedy,  if by happiness you mean a blessed, peaceful contentment...  I don't know how to explain how you can be content in a life where you constantly long for your child.  But my life with Joel was full of  joy even though it was full of pain, sorrow and difficulty.  And my life with Jesus is still full of joy, even if there is nothing easy about loss.  It is true, in His presence is fullness of joy.

I'm going to put up some pictures from the conference now.  I hope what I was trying to explain about God and what He means to me through this, did not sound trite.  I hope it didn't sound like Sunday School 101.  Because I promise you I paid to learn this truth, that the presence of the Lord gives fullness of joy, with my own tears.  There was nothing cheap or trite about it.

 This is Sam.  He is my friend, Shannon's boy.  I have some pictures where he has the biggest smile, but they came out really blurry, and at least in this shot you can see him walking (with some assistance).  Pretty cool, and did I mention that Sam not only has a PBD, but is almost done with treatment for leukemia as well.  GO SAM!

Cute as a button!  This is Kenna and her mom, Vicky.  I am just getting to know them, and looking forward to it very much.

This is Ginny.  Melissa Gamble is her mom.  I have a good picture of Mel somewhere too, and I'll put it up.  The first time I spoke to Mel on the phone, I thought "She sounds just like Ellen Page!"  Ginny is super cute, but I didn't get to hold her much because she has more refined taste, and preferred her mom...

This is Ciera.  Sorry, Jen, I just got part of your face!  I love this picture!  Ciera is trying to grab some of the decorations from the fiesta.  Yes, she has a PBD just like Joel, but she can see well enough to grab for an object.  Actually, each of the four kids I put up here has good use of vision and they are all in some stage of walking, assisted or unassisted...  Wow.  Wish I could have shown them to Joel's doctors...

Details.

Okay, today I'll put up some details about the conference.  Personally, I don't think I'm much of a details kinda person, I'm more of a "big picture" type of gal.  But I know (oddly enough) that some of you like a bit of the nitty gritty of what exactly went on, instead of just "It was fabulous and I spent the whole time visiting." 

Don't say I didn't warn you though.  This might be boring... Details are a lot more fun when you are the one experiencing them, not the one reading them.  Unless you are a Victorian reader.  Then you love em.  But none of you are Victorians, right?  So, if the details are too much, skip to the end.  There are pictures there.  Oh gosh, now it sounds like I think you are children, offering a picture book, instead of a novel.  Sorry.  Just do what you want and I'll get to writing out the details!

So here I go.  We left for the conference on Friday and if I were an ancient Roman, I'd say it was not an "auspicious" day for travelling.  I'm not at all superstitious, but it did seem like things were not going our way.  We got out of the house later than I planned.  Then we were almost clear of the city when Steve (fortunately) asked if I remembered the passports.  Guess what?  I hadn't.  So that was another half an hour to our trip.  We ran into lots of construction right off the bat.   The border went OK, but when we stopped for lunch (having only reached Grand Forks!!) we had some issues with the car wash that we decided to "quickly" use.  Instead of adding 10 minutes, it added more like another half an hour.  There was construction, construction, and even more construction.  And it was crazy hot and we don't even have air conditioning in the car.  It was sort of a grumpy day, I might add.

Finally, we ended up at a nice little hotel in Watertown.  We had left at 9AM and we got into the hotel somewhere between 5 and 6pm.  Making what was supposed to be a 5 or 6 hour travel day to be 8 hours and only half way there.  Boy was I glad we had decided to break the trip up.  But the hotel had a pool, there was a fantastic breakfast in the morning, and the next day (even though we had a tense hour after missing a detour turn and there was still some construction) went much more quickly.

We ended up at the conference hotel at exactly 3pm on Saturday.  And as soon as we stepped in the door we ran into friends at the front desk, so cool!  The conference didn't technically start until 3pm the next day.  So I hung around and visited while Steve and Caeden did their own thing in the room (which means watch cartoon, read a book, etc.)  I went to the coffee shop and got a Starbucks and a book, and then went and sat in the lobby to stalk greet people as they got in.  I got very little of my book read, but I did get to welcome a lot of people. 

I ended up in Pam Marshal's room, with her and her boy, Ethan, and another "new" friend, Vicky Maag, and her little girl, Kenna.  I say "new," because we all had met awhile back through the online group, but this was the first "in person" meeting. 

Finally a group of us ended up in the hotel dining room for a supper together.  Both the Alfaros and the Whitneys were there, two other families that had lost children.  Supper took a long, long time, but I very much enjoyed the visiting and sharing.

There was some pool time that evening, and then I invited myself over to the Alfaro's room (which was right beside ours!) for the rest of the evening.  (Are you sensing a trend here?  I just invited myself all over!)  I managed to keep them up visiting until about 1am while my wonderful husband watched my boy and TV in the next room.  We had a great time visiting.  At least, I had a great time visiting! 

The next morning, after a breakfast with some more PBD families, we decided to check out the "Fontanelle Forest," a big park with boardwalks and displays that was nearby.  I would call that decision an error in judgement.  Because it is HOT in Omaha.  Really, REALLY hot.  It was 38 degrees and the humidity felt like close to 100%.  Oh yeah.  We made it around the first series of boardwalks just barely.  And then we did the sensible thing, and went back to the hotel and the air conditioning.

There was some lunch with the Gambles and the Edgars.  After that, there was a lot of "mingling" on my part, there was a quick prayer time with some of the other parents who follow Jesus (which was good, and next time I'll plan it sooner), and then before we knew it the conference "officially" started with an amazing buffet meal.

After that, there were presentations, which is when my skipping out started.  I am sure the presentations were good, but as I mentioned before, I good reason for sort of taking a pass on them.  Instead I visited in the hall and watched the younger children with some good friends.  Caeden had a wonderful time playing with his two new best friends, Jose Jr. and Griffin.  I had a wonderful time chatting with the moms.

This is a long, LONG blog, isn't it?  See what happens when I get into details?  So I'll try and pick up the pace.  The next morning breakfast and then I went to the break out session for parents whose child/ren had died.  It was led by a group of ladies from Compassionate Friends.  There were five families there with children in heaven.  And I was really glad to see a few people with living children who were brave enough to join us for some of the day.  The best part of it was actually the afternoon, because after lunch we just had an open time to discuss and BOY did we have LOTS to say!  We could have used another day, I tell you. 

There was an introduction to the Parent Panel at 3:45, and I was on it.  Then the memorial service.  I did a reading for that, and while I cried, I managed to get through it.  There was a beautiful video of the many, many children who have died of a PBD, done my good friend, Carolina Alfaro.  And then we all composed ourselves, washed off the tears and headed out to the State park for a fiesta and more visiting.  We came back to the hotel, Steve and Caeden headed to bed, and I hung out in the lobby visiting until 2:30 in the morning.

I'm finally going to stop.  I already wrote a bit about the next day, which was Joel's birthday.  And I think you have been detailed to death.  But now you know.  The details on what I actually did.  Give or take a few.  Wish I could mention ALL the people I met and talked with.  But that would be very long.  I did want to give you a few names, though. 

Why?  Because instead of just talking vaguely of "friends" I wanted you to have some names since names make it more personal.  So it really hits you that there are lots of other, special people out there, and I love them.  They have names and faces, and that's why I am so sad when another child dies.

To finish off, maybe I'll put up some pictures of some of the people.  I took really awful pictures, I couldnt' seem to master the settings on the camera, but I'll put a few of the good ones up for you.

This is Carolina, or Caro, and her son Jose Jr.  Caeden LOVED Jose.  They were our neighbours at the conference.  I have a picture of Jose Sr. somewhere too.  The Alfaro's have two children in heaven, Diego who died shortly after I joined the group and then Adrian, who died this past winter just a bit before Joel did.



This is Caeden with his other best friend, Griffin, and Griffin's little sister, Skylar who was "too little" to know how to "play right."  Sorry Skylar, and you were so nice to him too.  The Edgars (Heather and Geoff) are fellow Canadians, and they are awesome people.  They couldn't bring Ben, he doesn't travel so well, but I have seen lots of pictures and I can tell you, he is a sweet heart.

This is me (of course) holding Jordan.  I cuddled him several times.  I wish I could have cuddled him a lot more, but I also had to share him, plus he really did prefer his mama to me.  Sarah is not in this picture, I don't seem to have a good picture of her anywhere....  anyhow, the other person in the picture is Jordan's dad, Kenny.

Ok, I'm realizing that this will take a long time, so I'm going to stop and continue it later.  The pictures I mean.  Not the details.  Don't worry, I'm done with those.  I'll just put up the pictures.  ;)

Joel's Birthday.

I wish more of our pictures  from the conference had turned out.  I could blame it on the fact that we don't really have an expensive camera.  I think it might be more that we've never really learned to use all the settings properly.  But I do have a few pictures, and I will put up a few of them in the next few blogs.

So, my choice today is to either write about Joel's birthday, or about a precious realization I had on the trip....hmmm.

OK, I will go with Joel's birthday.  You'll have to wait for the other one. 

Joel's birthday this year was... oh boy, how to explain it.  Let's see if I can get a list of adjectives going here, that all apply in some measure or other.  It had moments that were: poignant, affirming, wistful, joyous, peaceful, heart wrenching but in a good way, comfortable, lonely, awkward, restful, fun...

It was a very different day, I am sure, then it would have been if I had been here at home.  Yes, I felt both awkward and comfortable at times throughout the day.  I felt very comfortable, being with all my fellow PBD families.  I also felt awkward at times.  I felt comfortable because I knew they understood the importance of the day and what my son meant to me.  I felt awkward, because I could feel them worrying and wishing so hard to ease the day for me.

It was both lonely and heart wrenching, because so many people left that day, and by the end, we were the only family who had lost a child.  It felt a bit lonely from time to time, seeing all the living PBD kids.  And of course, heart wrenching too, but in a painful but good way.

Everyone did so much to remember the day and show their support.  We had a very late brunch with friends Tracey and Ken (Graham up in heaven).  It was good to spend that time with other grieving parents.  Though in truth, all the PBD parents are grieving parents, just that the focus of the grief is different.  

  We spent the evening at the home of  Shannon's (Sam's mom) parents.  Her and Melissa (Ginny's mom) worked together, and with some fancy footwork from Melissa's husband, Brant, they managed to get me the balloons I wanted to hand out to the children who were there.  Shannon's family also provided a lovely Chinese lantern to light, and as we lit it and sent it up into the sky, we sang Happy Birthday to Joel.  It was very beautiful and special, but the very best part of it was the people who surrounded me and cared so much.

The absolute best gift of the day happened in the morning.  Throughout the conference, I was able to hold, cuddle and interact with lots of PBD kids.  Every time it was so special and a beautiful gift to me.  My friend Sarah let me hold her boy, Jordan, lots of times.  And most of the time, he didn't even cry at the strange lady holding him.  I loved every single one of the kids I saw from even before I ever laid eyes on them.

But the highlight of Joel's birthday was when I formally met, for the first time, a little boy named Clayton.  His mom, Jen, let me hold and cuddle him for about 20 minutes on the morning of Joel's birthday.  Yes, I wept.  Lots.  And I was so thankful for those precious moments.

Clayton is, of course, his own sweet person.  He is not Joel, he is special and unique and wonderful just as himself.  For that part of it, I enjoyed every minute as I would have even if I had never had Joel.  But holding him also did something beautiful for me.  It allowed me to remember Joel more clearly than I have in a long, long time.  There were so many things about him that aided my mind's eye to feeling Joel in my arms again, to seeing the beautiful expressions on his face.  He was not Joel, but he loved cuddling the same way, and he smiled and laughed with delight over it.  His eyes glimpsed up at me as Joel's so often did.  He made little noises of happiness as Joel did.   I can't even explain it.  It was just priceless, feeling those memories wash over me so clearly.

So, I'm going to end with some pictures of me holding him.  I'll put up some pictures of the other special and precious children another time.  This is about Joel's birthday, and seeing me holding Clayton is about the best explanation of what that day was like for me that there is.

Conference

It was, of course, over too soon, and hard to say good-bye.

But the conference was very, very good.  I crammed as much talking and being with other parents as I could into it.  I was up until at least 1 AM every night we were there.  I skipped pretty much every session, but the grief one, and just hung out. 

Don't get me wrong, the sessions were good.  I just wasn't there with it all, as far as getting information goes.  One of the biggest reasons I missed the info sessions (aside from so I could chat with other people) was because I couldn't help the tiny uncertainty I had that I would hear of something I had missed doing, something that might have helped Joel.  I already have enough things I wish I had known about/done/figured out, etc that make me feel sad, so I have no wish to come across any others.   And much of the information was good for new parents, but quite a bit of it I had already heard or learned before.  Which means: old info = redundant, and new info = feeling bad.  So I skipped out.

But as I said, I crammed every second I could with talking to parents and seeing their kids.  It was so good to be face to face.  And it was so good to talk about Joel, Joel, Joel, for about four days straight.  None of the other parents ever gave the impression that they had just about had enough of hearing about him, either.  The other PBD parents are so great.  So they let me feel a part of it, and go on and on about Joel, in a way that I never otherwise get to do.

And you know what?  After the fourth day of it, I thought, whew... I think I have said enough.  Now what can I talk about??  Not that this feeling will last.  In a couple more days, I know I will wish to talk about Joel more, but it will be just as hard to do as before the conference, and so much of my "talking" about Joel will be in the form of silent longing for him, memories, and all that sort of thing.  Still, it was an incredible gift to be able to talk about my child to my heart's content to other people who understood, related, and didn't mind, because they were talking about their kids to their own heart's content too.

I didn't feel as sad as I thought I might, either.  Oh, not that I didn't feel sad, or that it wasn't painful to see other children like Joel, to be at a conference about them, and be sans Joel myself.  I just had expected to be sadder.  In truth, most of the time I was so happy to see my friends, and so happy to see the other children, that the sadness seemed small by comparison.

The conference was a wonderful gift.  And we owe it all to the Brady Colbert Foundation for paying our way.  We are very grateful.

I have a lot more to say about it, but as soon as we got home, I was totally wiped out.  Whew.  So much emotion and stuff.  Steve and I are so tired now.  So I'm doing a bit of laundry, we are buying some groceries, and we are just going to rest for a couple of days.  And I will get back on here and write about Joel's birthday a bit later.  And put up pictures, including one of Joel's new box for his memories.  And some other stuff.

For now, I just wanted to share that we are back, that we loved the conference, it was good for us, and everything went just fine on our trip.

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.