Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Tuesday, May 31, 2011

For My Mother in Law

Here are a few videos and pics for you.  I wish I had more than I do.  I wish we had not lost most of ours from Joel's first year of life.  But of course, even if we had hundreds and hundreds, it could never be enough.  So one day I will run out of pictures and video, and I'll start having to recycle them.  Today is not that day, though.  So here you go:

If this video uploads properly, then you will see one of the last videos we took.  I don't know the exact date, but it was around the winter holiday season.  I know this, because the "ugly eye bumps" started sometime after the first week of January, and after that there were no more videos and only a few pictures...  Even though he is sleeping in this video, I love it.  That is how beautiful he looked when he was asleep.  Cute little curled up feet, and resting with such peace.

I will see if I can upload another one.  This one is of Joel when he was a year and a half.  Please excuse my scolding in the background right in the middle of it.  Anyone watching our videos must think I'm really cranky.  Sorry.  I had an almost three year old at that time.  What can I say?

Where I am and How I Got Here: part two

I wrote the first part of this blog a while back now, and I suppose I should try and finish what I was saying.  I wrote, waaaay back then, about how this time with Joel was not the first time life had taken a turn which tested my faith.   I wrote a bit about my struggles then, and my relationship with God, etc.

The thing is, I worry sometimes that people see a "half finished" product in my faith journey, and don't realize it.  How can I explain this...  people sometimes mention my faith, how "strong" it is, or how they are "amazed" at the way I've trusted God in all of this.

And so I want to make it very clear... you have stepped in on a process part way through.  I want to make sure that if you see someone who is "struggling" with their faith, someone who is angry at God, someone who seems "flounder" with all the question, that you realize this might be because they are just starting out in the process.  This says NOTHING about the "quality" of the clay... it's about where the clay is in the process of being worked. 

At first, it is just a hard lump of, well, guck.  Seriously.  Clay gets a lot of work before it's even usable.  I'm not a potter, I don't know much about it, but I have had a lump of clay in hand before, and I sure don't know who ever figured out that you could actually make amazing and useful things out of it.  It looks to me, at first glance, like something you would put out with the trash.  Who'd guess with a lot of molding, kneading, working, and putting on the serious heat, amazing things can be fashioned?

The point is that the same quality of clay might look really different depending on what stage you see it in.  It's wholly the potter's work that transform the clay.  And sometimes when the potter works something on the wheel, it might be looking pretty good, but then something goes a little "off," and the potter must re-mold and fashion it once again.

Every trial and difficulty that we go through can be used by our Potter to make something beautiful and useful out of us.  This is an understanding that comes THROUGH the trials themselves, we don't start out with that trust, it grows as we practice it.  The more we trust God, and seek Him in our pain and trouble, the more He can fashion us.  And the more He fashions us, the more we trust Him! 

Sometimes we might even think the pottery we are becoming is looking pretty good.  From our standpoint.  But maybe somewhere it is a little "off," a warp that will weaken us, a bubble that will fracture us when the heat is on, something that will mar the final product.  And then, in a sense, it might be "back to the drawing board" or pottery wheel for us.

Is there anything more painful to us?  Is there anything more difficult then feeling you are "almost a pot" and then being beaten down into a lump of clay?  Becoming weak, becoming nothing once again, being flattened and pummelled...

I don't know what stage of pottery I am right now.  I don't know if God is going to need to rework me once more, or twice more, or if a hot furnace is on the way.  Humility is the wisest course when we are made of clay.

But I can tell you that during all of this, I have many times been a "lump" of clay.  I have felt many times that what God was asking was too much.  I have needed to forgive other people many times for "not understanding," and then go back and forgive 'em again.  Many times I have been humbled by my own tears, and my own lack of control over the most important and basic factors of my life.  I have felt self pity and resentment in the dark of the night faced with a sick child and no sleep.  I have often said to God "I am forced to give You my son, how can You allow him these tears/this pain/this loss of ability?"  I have been unable to force the words between my gritted teeth, the words that would say "Something good can come even of this," the words that would say "I will do what You ask" to my God.

But I have been worked on this wheel for a long time now.  I have surrendered to these gentle and unflinching hands from long, long ago.  There is no going back for me.  There is no climbing off this wheel.  You are looking at more than 20 years of the process.  I would not turn back from this path, as much as it lies in me I will follow in this path, and God will supply all the other 99% of it.  For my part is 1%.  I say "Yes" to the Potter.  And He does the rest...

So my point is,  if you come across someone in a "lump" state, keep it in mind.  It never looks like much at this point.  Don't judge.  Don't think "they are not 'handling' this well," or "Man, are they angry, full of self-pity," etc, etc.  A lump of clay is what we all are.  It's the touch of the Potter that changes all that.  And if you see a vase forming, remember it is made of clay too.  It did not fashion itself.  A loving, creative hand has been there.

And if you find yourself in a "lump" stage of life, I hope this thought can bring you some courage: every lump of clay has the same potential.  And every beautiful piece of pottery is something you can turn into, if you let the Potter shape you.

Like I said, I don't want to begin to say what stage I might be in this whole thing.  Surely a struggle with anger, or greed or self-pity could work into my clay at any time.  What was forming might be broken down for a time.  But here is where I am: on the Potter's wheel.  And here is how I got there: I said, a LONG time ago, "Yes, Lord."...

Monday, May 30, 2011

Caeden

Someone asked in a comment about how Caeden was doing.  So I thought I'd say a bit about him. 

I think Caeden is doing well, and I'm not too surprised at how he is doing.  I sort of had a grasp on his relationship with Joel before Joel died.  And also, I did some work to prepare Caeden for this time.

But that doesn't mean that even I exactly know what is going on inside Caeden.  Because children, particularly such young children, really have a tough time explaining feelings and thoughts, you kinda have to judge a lot from their behavior.  On the other hand, it is really tough to know when certain behaviors are signs of emotional turmoil, or just a sign your child is in another "phase" of development.  So most of what I say about Caeden is a bit of conjecture.  But here is what I have got:

After Joel died, Caeden was understandably a lot more "clingy."  He wanted lots of cuddles.  He sat in my lap A LOT.  This may have been due to the insecurity losing a member of the family creates in a child.  It might also have been a reaction to finally having Mummy's lap ALL to himself.  A reaction to feeling "second fiddle" for so long.  For the first time, all my love and attention was available for him, and he did make full use of that.  Some of that has "worn off" a bit, but he still likes to sit in my lap, and to have a "morning cuddle."

Caeden has been more prone to "meltdowns" since Joel died.  Then again, it is hard to say what that is all about.  He had many off and on times where he was prone to meltdowns, and then "better" times in between.  He is, after all, only 4.  And four year olds are prone to times of meltdown behavior.  Hard to know what is related to stress and change, and what is related to being 4.  All things considered, he seems to be pretty well adjusted.  And happy.

I think it might make people a bit uncomfortable, but the truth of it is that Joel's death affects Caeden VERY differently then Steve and I.  He really wasn't what you would call "close" to Joel.  Last year, when Caeden was 3, Joel was more able to interact with him.  Then, there were times of a sort of "playing" together.  We would play "patty-cake" and if Joel was on the floor, Caeden would bring him toys, and etc.

But all sorts of stuff happened between now and then.  And Caeden's memories of that time are very hazy to non-existent.  The last three to six months of his life, Joel was still interactive, yes, but not in a way that is interesting to a three & a half/four year old.  Joel's role in the family, from Caeden's point of view, was that of a boring drain on Mommy's affections.  Joel was a body that took Mommy's lap up when Caeden wanted to sit there.  Joel was Mommy getting medications and feedings.  Joel was sometimes a lot of unhappy crying.  I'm not saying there was no level of affection there at all.  But Caeden's experience of Joel was COMPLETELY DIFFERENT from Steve and I.  And I'm ok with that.  I really understand.

So with the honestly of a four year old, Caeden will say he doesn't miss Joel.  His feelings are too nebulous and ambivalent for him to completely understand and articulate.  In fact, his grief process so far, I think, has included more of guilt for being happy to have his parents to himself.  And confused, frustrated, and again, guilty, because his parents remain so sad and unhappy about an event that scared him, yes, but did not, in his eyes, change his life for the worse.

The part of it that really tears my heart out is not this part.  It is as I had expected, anyway.  What tears my heart out is when Steve and I broach expanding our family with him.  When we start discussing how he'd feel about adding a sibling.  Invariably he says "One that can walk and talk??"  This makes me feel so sad.  The gap between what was and what could have been.  The gap that he feels more and more.  And the gap he will feel as he grows older.  The sibling he COULD have had.  And doesn't.  This is where most of the "grief" part of his grieving process will end up.  He doesn't miss what he "had."  He will miss what he COULD have had/have, and doesn't.

He is indeed, a big blessing in the grieving process.  Seeing him laugh and run around in delight lifts my spirits and gives me a great joy.  I thank God every day for this.  It is precious.

Of course, the other part of it is that in some ways he makes grieving harder.  Because it is hard to do with him around.  It is nice to have his demands on my love and attention.  But on the days when I feel like I'd just like to shut down for awhile, I am in a quandary.  If I take some grieving time, I feel guilty because in a sense I'm a bit emotionally "absent" for him.  But if I don't, it is tiring and the grief can build up, etc.  It is a balancing act.

Caeden forces me into the world of happy, healthy children.  I'm so grateful for that.  On the other hand, taking him to Purple Stew was SO MUCH emotional work for me.  I must honestly admit that I really didn't enjoy it that much.  It was GOOD.  I was glad I did it for him and for me.  But I can't say it was exactly fun.  He forces me out of the house.  But sometimes I just want to hide inside of the house, instead.  And then I feel a bit guilty...

Of course, nothing about grief is easy.  If he weren't around to force me out of myself, then I might really get stuck in the muck of it.  Love is a powerful motivator.  Thankfully.  But that doesn't mean it is easy.

So what can I tell you about Caeden?  He and I are slowly forging a new sort of relationship.  He doesn't always enjoy the fact that I have more energy to discipline him, making him pick up his clothes and his toys.  But he loves finally having the obvious "first place," in fact, the whole of the place, in our lives.  He hasn't had a nightmare for a long time.  He really seems very happy and contented.  And I try above all else to let him feel what he feels about Joel.  And to check in every now and then about what ever might come up.

He was very happy to get his "Story of My Family."  As time goes on, he'll understand more and more.  I am really not too worried about how Caeden is going to come out of all of this... maybe I should be...but it just really seems to me like he's going to be ok.  Because Steve and I are ok.  We are sad, filled with longing, sometimes regretful, or overwhelmed, occasionally even agonized by loss, only just realizing what has happened and just beginning to deal with it and sort it all out.  And ok.  All I can tell you is that we are ok, because God is here, with us.  And because God is with is in this journey and we are ok, so is Caeden.

Saturday, May 28, 2011

I Can Do a Lot of Stuff...

Since Joel has died, I quite suddenly have been able to do so many things I couldn't before.  Or that I couldn't do without planning respite and preparing, and there were certainly limits on either how many different things I could do, or on how often I could do them.

I stayed home a lot.  Most of the time, other than some sadness at stay at home vacation or watching other people go camping, most of the time, I didn't mind too much.  I loved staying home with Joel.  Of course, some of my best memories are TAKING JOEL somewhere.  Like last summer, when he felt happy enough to enjoy picnics.  Or our "Staycation."  Or even just the times he was up for and enjoyed a stroller ride or just hanging out in the back yard.

But I didn't mind all the evenings of just being at home with my boys.  Or the afternoons, either.  I know, I'm a bit of a "homebody" for someone who claims to be an extrovert.  But I enjoyed the winter evenings of just cuddling my boy and watch TV or reading a book.  In fact, though respite was really good for us, and for me, because I NEEDED to get out and so did my family, I can also tell you that in a strange way there were many times that I went out on respite day knowing that I was giving something precious up to my respite worker.  Of course, I'm not suggesting she didn't deserve her pay.  It's just that sometimes when I left my smiling and cooing little boy, I knew that I was surrendering to her some precious hours that I'd never get back.  Hours that were on a very short supply.  I did it because I knew it was good for me and the family.  But I also sometimes did it with a pang.  I was happy to get back to Joel at the end of the four hours.

I was fortunate to be so happy in the midst of it all.  There were times, like last spring, where I felt a pang of sadness for missing one of the most lovely spring seasons in a while, due to being in the hospital for much of it.  Yes.  There were times like that.  Sometimes.

This year I can enjoy the spring.  But yet, there is much fiercer pang.  Last year Joel was in hospital during my birthday.  This year around my birthday I couldn't help but feeling it.  Yes.  I wished that I could be in the hospital on those beautiful warm days, I wished I could be in the hospital again, just holding and cuddling Joel.  Of course.  I wished I could just walk into the hospital, abandoning the sun and air and leaves, to find my Joel and hold him.

This was the life I had with Joel.  And I miss it, because I miss him.  It's not that I have no interest in lovely weather and parks, really.  I do.  It's just that I never had much chance to have BOTH that AND Joel.  And if I had to choose, Joel would win every time.

This is NOT to say that I feel guilty about this new freedom, or about walks in the park, or going shopping or for coffee.  I don't feel any guilt about enjoying going out to a movie "when I want," or being able to so easily run to the grocery store on a whim for what to have for supper.  I don't feel guilty about being HAPPY while I do these things.  I truly don't.

Why should I?  I know that Joel has not ceased to exist.  His life is not over.  I know that Joel is enjoying himself immensely and would I want him to sit down in heaven and cry for "poor Mommy" because she misses him so?  NO!!  I'm happy he is happy, joyful and at peace.  He's really got it a lot better than I do.  And I'm sure my sadness is no comfort, consolation, or joy to him.  So I don't feel guilty at all about enjoying these little pleasures that some people take for granted, but that felt so strange to me.  Nice.  Enjoyable.  And strange.  But no guilt.

So I do enjoy them, but at the same time I feel sad.  Sad to be able to enjoy them.  I am happy, in the park, or visiting a friend.  Whatever it may be.  But at the same time a small part of my heart is broken.  Because how ever nice it is, it's not Joel. 

I'm trying not to get swallowed up in longing for him.  I don't want the longing to swallow up the goodness of what I can have now.  It is what I can have.  It is not what I chose.  But it is what I have been given.  So I'm trying to rejoice in it as much as the pain in my heart will let me.  Sometimes just a little.  Sometimes a lot more.  A big jumble of enjoyment and contentment and sadness and pain and longing and peace and happiness and loss.  And that is talking about the easier days. 

This is the day that the Lord has given.   There is much opportunity for good, for rejoicing and being glad.  In amongst the tears and longing.

Thursday, May 26, 2011

Frost & Dreams

Yes.  Frost.  A bit of devastation in Joel's flower bed.  It could have been worse, though.  The temperature last night dropped to a crazy minus six.  Yeah.  So far the only flowers lost were about 8 of my portulaca.  They really love sun and heat.  They are now toast, figuratively speaking.  Some of the other flowers were looking less than pristine, a bit bedraggled around the edges, some limp leaves and droopy flowers.  But I think most of them will recover.

It was disappointing, but not devastating.  Frost happens.  Then you replace the flowers that have died.  And grow even more patience waiting for the others to recover and look nice again.  But I didn't take any pictures!  A month from now the flower bed will look even more wonderful than it did before the frost, I know.  For now, I'll let it get some beauty rest before I photo it.

I had a dream a couple of nights ago.  I was terribly sad in the dream, in fact I was crying and I think when I woke up there was more than the usual amount of sand in my eyes.  I don't hold too much to dreams being more than dreams, but sometimes they really do illuminate what troubles you. 

This dream was set somewhere post-Joel, in the future.  I had returned to work as a NURSE due to my vast medical experience (ha ha ha!) and I decided to call in sick, because I was sure that I couldn't really handle the job.  After so many years out of the work force, I really didn't think I was capable of not utterly failing.  True dream fashion, even though I supposedly had training, I could not remember a thing.  That was part one of this dream.  I think we can all see what is happening here, with no need to consult some "what your dreams mean" book.  I don't know what to do with myself, I don't feel strongly about doing anything other than that it be people-related, and I might also be a bit anxious at the thought of returning to a "profession" after all I have gone through.

The second part of my dream unfolded alongside of the first part.  A friend I had not seen in a very, very long time was visiting.  I thought she would be staying for awhile.  Then I found a gift bag with a bunch of lovely gifts inside and a note explaining that she could not stay long after all.  In fact, she was sneaking out of the house as I found the gift.  And in my dream great wells of sadness welled up in me.  "Can't you stay?"  I plead with her.  The gift was lovely, but it didn't compensate for my deep sorrow that I didn't have more time with her.  I'm not going to say much about that dream either, other than that when I woke up, the sadness was still welling up in me, and it was the same sadness I feel about Joel being gone.

Like I said, I don't hold too much to dreams.  On the other hand, it is interesting what they can reveal about your state of mind or emotions.

Ok, am I now reduced to telling you about my dreams??  Sorry.  I really was going to write about a few other things, but was avoiding writing about the day Joel died, amongst other things.  So maybe I will now sit down and write the other blog I was going to write.  About my feelings on my "new freedom" if I must label it somehow?  On the other hand, as I look back over what I just wrote about my dream, perhaps I have already started to write about that very thing...?

Wednesday, May 25, 2011

A Shameless Plug

I have something to tell all the Canadians out there who read this, and I'm really excited about it.  Here is a shameless endorsement of something I think is wonderful, and even though it is something I might one day in the future benefit from, I have no shame in endorsing it because it is a beautiful thing that one family can do for another.

I know I have some friends out there from the States ( like Christina, and Karaleen) who have undergone an embryo adoption in order to have children.  But for a long time up here in Canada, it was frowned upon by the powers that be.

What seemed very strange about this to my thinking was that the thinking seemed to be based on fears that one couple would pay another couple to have IVF and then "purchase" the embryos from them.  This would indeed be ethically questionable, I agree.  The strange thing, to my mind, is that embryos could be donated to science this whole time!  No one worried that people would be payed to create embryos to donate to science and no one seemed worried about the ethics of using what IS human and IS alive for scientific purposes.

I am happy to say that things have changed about all this sometime recently.  I had looked into embryo adoption (here in Canada, we don't use the word "adoption" we use the word "donation."  Please don't be confused if I use both adoption/donation.  I have a hard time swallowing that even what the law calls a "potential human life" could be donated!) a while ago, after Joel's diagnosis.  Now, again, Steve and I are contemplating how to go about the process of more children.

And a friend did some investigating for me and discovered that there is currently an agency here in Canada that is working on setting up an embryo donation program.  The trouble now, is finding the donors.  Donors for this program would be people who have ALREADY gone through IVF and had all the children they want, but still have some viable embryos.  They may be people faced with an ethical dilemma because they have questions about destroying the embryos, letting them die, or donating them to science.  Or they may just be people who have extra embryos and wish to give a kind and generous gift to another family.  ( please note that no one is asking anyone to go through IVF for the sole purpose of donation.  That is NOT in the parameters of the program.  This is just for people who have had IVF done for themselves, and now have extra embryos.)

The caveat here is that the agency that is doing these embryo donations is doing "open" donations, very much like open adoptions and in the spirit of open adoptions, believing that openness and disclosure are best for the children involved.  And just like an open adoption, the amount of contact depends on the families involved and the contract they work out together.  It also means that if you donate your embryos, you can be sure that they go to a family that you are comfortable with as parents.  Oh, and families have to go through the same screening process, complete with home study, as with adoption.

Even if Steve and I did not find ourselves in this situation now, of being carriers for a fatal disorder, I would think this is a great idea.  There are so many families out there waiting for children.  There are a lot of extra embryos out there.  What a gift, to fill someone's empty arms!

I'm going to include the name and contact info for this agency.  It is based in Ontario, but works across the country.  And I'm going to ask you, my faithful readers, to take this information and spread it around so that people hear about this.  If you go to church, mention it there.  Maybe your pastor can look up the program, and then make an announcement on Sunday!   Mention it to friends or family who have done IVF.  Or mention to friends or family who know someone else who have done IVF!

Oh yeah, and if anyone of you, my readers, happen to have some extra embryos, please consider donating them.  Steve and I are thinking about going ahead with starting an adoption process for a baby.  But we would be very happy to adopt an embryo too!  Just saying.  :)

Here's the info: Beginnings Family Services.  http://www.beginnings.ca/


I can't believe I had to give up someone so beautiful.  That's my mother's heart speaking...  I'd bring him back, for myself, though for him, I'm glad he's healed.

Blogs are coming soon.

It has been almost a week since I posted a blog.  That's partly because it has been a bit busy around here.  But it is also partly because it has been a tough week here too.

I've still (mostly) been keeping my morning times with God.  That has been a struggle at times, too.  I know it is important and I sure notice when I don't spend some quality time with Him, but there are days when you just feel the urge to avoid, avoid, avoid.  It seems like so much work to get real with God, because it means facing some negative emotions and all that sort of stuff.

You know that the emotions and the work and all that don't go anywhere when you set them aside.  Procrastination has never lessened a load.  Still, it is hard to fight the urge to spend a day in distraction.  Or maybe several days.

I'm trying to keep being real with God.  Each day.  A "bite size" chunk of sadness.  Then if I feel the urge to distract myself later, that's ok.  Best, even, if I can distract myself by doing some good and positive.  But I'll still stoop to tv and video games if necessary.  And if too tired to muster much up otherwise.

I've had some blogs I wanted to write.  I wanted to continue my thoughts on "Where I am and How I Got Here."  I wanted to write a blog about the day Joel died.  I wanted to write a blog about my thoughts and feelings on my "new freedom" for lack of a better way to say it.  In short, there were a lot of blogs to write.  But in the spirit of avoiding painful, tiring and difficult emotions, I obviously did not write them.

It's time though.  Time to forge ahead and deal with some of these things.  Even if it is sad or hard, or as I have stated: exhausting!  It amazes me how sometimes the hardest thing about grief is not the sadness or pain, but the utter exhaustion that comes with dealing with these feelings.  Sometimes it is physical, other times it is mental.  But wow.  It takes a lot out of you...  And now that I have licked my wounds for awhile, I am GOING to get up and write about the fun experience!  Ha ha ha.  But seriously, I am working on it.

Before I go, I'm going to say that I still feel very peaceful about it all, in general.  It hurts.  It exhausts me.  It even sometimes feels overwhelming enough I would like to play video games all day long (which I confess is basically what I did all day on Saturday).  Yet in it all, I can say that I still mostly feel peace.  Peace.  And that is a precious gift.

Thursday, May 19, 2011

Joel's Garden: Pictures.

Today the weather was good, and Steve was not subbing.  So we bought a few more flowers and took them out to Joel's grave, or Garden.  As I like to see it.

I think it looks beautiful, and hope as all gardeners do that today was the day it looked it's worst, and that it only grows more beautiful in time.  So here are the pictures of it.  Isn't it amazing, the difference from the last time you saw it to now?  Green grass and flowers.  I LOVE it!!





I cried when I planted the flowers, but this is really not a "sad" place for me.  It is a remembering place, and remembering brings tears.  But I love these flowers, for not only are they beautiful, but they are ALIVE.  And I remember that under this patch of ground is a husk, a shell, that enclosed my son's life.  He has abandoned that shell now, but the living part, the seed, was transplanted just like these flowers.  And my son is blooming somewhere else.  These flowers are a reminder of that truth.

Still, I miss him.  Two years is such a short time to hold such a small little person...

Tuesday, May 17, 2011

Joel's Garden, Continued.

Hey, thanks for all the supportive comments, people!  I'd like to respond to each one, but I'll never get to it.  I'm just going to mention one of my favorite comments lately was the one from the person who lost a child and had a quilt made out of the clothes.  It was my favorite, because the mom told me that she couldn't cut up the clothes.  She had Grandma do it, and it even took her a year to be able to do it.  It was my favorite because I knew this lady really understood so exactly how I feel about putting a scissor to Joel's clothing...

Still, I'm going to do it, one of these days.  When I'm ready.  I do want it to be me...  I don't know why, but if they are to be cut up, I want it to be my hand, and my tears as I do it.

Further on how difficult it is to tell people how I am doing:  I realized that one difficulty is that my days are all so up and down.  But I can't say that I am having a "bad" day or a "good" day.  Because those qualifiers are highly inaccurate.  I have hard days.  Sad days.  Crying days.  And I have easier days.  Lighter days.  Laughing too days.  But I can't say that any of them are "bad" or "good."  Just easier or harder.  For the sad and crying days have their own good in them.  As long as I keep God near, I find them all so, though some days I would not go where I must to get through.

If I can find purpose in my day, then surely what it brings has some good.  And I have found that when I bring my day to God, purpose is revealed in it.  But sometimes purpose is painful, tiring, or difficult.  Yes.  But this is not evil.  It is purpose through pain, weariness or difficulty.  That is something else altogether.

These are just side notes.  I wanted to talk about something else.  Though that something IS related to purpose. 

I wanted to write about Joel's garden.  Though this is a second garden I'm making as well as the one on his grave.  I have dug out my front bed and started to plant it with flowers.  So today and yesterday were happy days for me.  And in this bed of flowers, I am spelling out Joel's name.  Well, I did spell out Joel's name.  But it's going to take a bit of time before you can see it.  Not all the plants are flowering, and of course, they need to grow a bit.  So right now it's more a jumble of green with some flowers here and there.  I'm hoping it will look better soon, and that not too many will die, as it was a hot day, and some of them look a bit wilted.

I have also purchased a few flowers for Joel's grave plot, but I'm not sure the topsoil is on yet.  I hope to go out there soon and start planting that.

And all of this had me musing... about "doing" things for my son, and why it is so important, and why it helps me, and all of that sort of thing. 

I can no longer really do anything for my son.  This is the truth.   I want to hold him.  I can not.  I wish I could give him something.  I can not.  I wish I could make him feel my love.  I can not, and if God does this for me, pass along my love I mean, that I can not see.  So there is nothing I can really do for my son now.

So why do I "do" things with him in mind, and why does it mean something to me?  I have said before that it's "in honour" of Joel.  I'm not even sure what that means.  But I have realized something.  It means something to me, not because I think I am doing something for Joel.  It means something to me, because it is an outlet for my love for him.  A positive outlet.  Something beautiful comes where my love is spilt out.  A beautiful garden.  Singing to God.  Maybe passing along some love or encouragement to someone else, when I do it "because of" Joel's impact in my life.

For not only do I long for my son and wish so much I could have him near.  Also, my love for him overflows in my heart, but he is no longer there to receive it from me.  It builds up, in frustrated abundance and pressure.  And so, it helps to find a place, a useful place for it to run into.  And it helps me to do these things "in his memory" because it allows me to say, even if only to myself "I LOVE MY SON!"  And being able to show or say "I LOVE JOEL," is a very meaningful and joyful thing.  Even if it is only I that knows what I am saying.

And this made me think and understand something new.  Or something old, in a new way.  Jesus said, long ago when on earth, that if we gave a cup of water in His Name, we would not lose a reward.  And once, a woman who was known as a "sinner" anointed him with oil out of love.  Some criticised her for "wasting" this oil, which could have been sold and the proceeds given to the poor.  But Jesus said that we'd always have the poor among us (what an indictment!) and that she'd done something so special for him, that it would be always remembered. 

And I realized what the Lord wished from us, in all of that.  Yes, we do things "in His Name" to give Him honour.  But there is so much more to it.  We no longer have HIM here with us.  We can not anoint his head with oil.  We can not bandage His wound, or cook Him a nice dinner.  We can't give Him a warm blanket or a hug.

But what that should create in us is a painful overflow.  There should be an almost painful pressure in our hearts, a yearning to show Him whom we say we love, a yearning to demonstrate our love for Him.  And as He is not here with me, in the same way my love for Joel "spills" out all around me, finding places and ways to declare "I loved my son," so my love for Jesus should be doing the same thing.  And when I do these things in His Name, it should be saying, or shouting, into my heart and out into the world "I love Jesus."

There should be a "garden" all around me.  There should be flowers everywhere, from the love God has filled me with spilling out.  And this should give me the same sort of joy that I have when I plant Joel's gardens.  Beautiful actions should surround me out of the overflow of love in my heart.  Beautiful gardens, for remembrance of Joel.  Gardens, "gardens," everywhere, in remembrance of Jesus.

Here, I am giving you a seed.  Now you have it.  Please, take this seed if you love the Lord, and go out and plant something beautiful, watered with the love for Him from your heart.  May gardens abound.



Friday, May 13, 2011

Quilt

I have been contemplating an idea a friend has given.  You see, I have quite a few items of Joel's clothing... more then could fit in the size of memory box I was planning on.  And I am finding I have a great reluctance to give any of them away.  They are so much more tangible, as reminders of my son, then just a picture.  Not that pictures are not super or precious.  I'd never give one of the pictures up!

But clothing can be held and felt.  There are memories in it.  But I know in my mind that a box of clothes just sitting in a quiet corner is only taking up space, getting musty, and it's not something you are going to pull out every day for the rest of your life either.  It's not practical.  Not that I think practical is the be all and end all of things.  I can be very unpractical.  Still.  It's a lot of clothing that I can't seem to get rid of.

In fact, I am resisting the urge to ask some of the people whom I gave/lend Joel's clothing to, to give said clothing BACK.  I had some really amazingly nice and cute clothes from his first year of life, and I (maybe wisely) made sure to lend it out as soon as I could.  Most likely the said people don't even have the clothing anymore, most likely they in turn passed it on, or can't remember where it is, etc.  So I am trying to not even GO there.

My friend gave me an idea.  It is a good idea.  She said she knew someone who made a quilt from her child's clothing, after he died.  Now that seems like a perfect solution.  A quilt, which could wrap around me and be felt at any time without sitting in an awkward box.  Useful, and sentimental, all at once.

So I am mulling it all over.  There are a few slight difficulties.  First one being that I'd have to steel myself to cutting up Joel's clothing.  For some reason, this seems hard.  Taking a scissor to his jammies.  It's a point of no return.  Points of no return are hard these days.

And Joel being so small and so young, his clothing is small, and covered in small child stuff.  Dinosaurs, cute aliens in spaceships, cars, and Cookie Monster.  I want it to be MY quilt.  But I sure do want to keep these emblems of my son's baby/childhood.  So this quilt would not too likely be a real "display" sort of quilt.  But then, not sure I want to display it either.

And the colours.  My favorite clothing is red, brown, black, green, and many shades of blue.  Not too sure about the final colour scheme there. 

Or how to work it out practically when some of the clothing is small, and some is larger.  So I'd have make some squares out of two pieces of fabric... and though I thought I had a lot of clothing, when arms are too small to provide fabric, and sometimes legs too, in the end, this quilt might NOT be that big.

But I think the result might be worth it... and maybe cutting up the clothing would be worth it too.  I'm pretty sure I'd be crying as I chopped up the pieces with my scissors.  That sounds painful.  But not necessarily bad.  Sometimes pain is what you go through to get a beautiful and meaningful quilt.  Just like sometimes pain is what you go through to get experience, compassion, and memories.  No love without pain.  No quilt without cutting.  So it is.





I don't know why I like the picture of him with his CPAP machine on, but I do.  It's not the cutest look, I guess, but the sight of him happily drowsy/sleeping with the machine on, the one that let him have such good health and happiness for so long, well, it's a cute picture to me, anyway.

Wednesday, May 11, 2011

Where I am at, and how I got here.

From time to time someone has mentioned their surprise at how through the life, illness and loss of my son, I have not become bitter or angry...

Of course, that is generally.  For of course I have had moments of bitterness or anger.  But sometimes it gets mentioned with surprise.  Because I think quite a few people expect bitterness or anger.

I have already shared in quite a few other blogs, some of the story of my life and how that has affected me and how God has led me all along.  But I just wanted to touch on it once again.  I might even need/want to discuss it through several blogs.  We'll see.

I know I mentioned that this journey in the land of grief was not my first.  That I had experienced loss before, when I was a teen.  I had several foster-siblings that lived with us for several years.  And then they were moved.  It's still hard for me to talk about.  I like to skirt around the whole story, to be honest.  Even now, years and years and years later, I'm not super comfortable getting into it.

But here is, in general,  the whole experience.  God let something that could only look terrible to me eyes, happen.  Did He cause it?  I've already stated my belief that no, God does not cause every bad thing that happens to us.  But did He allow it?  Yes.  Of course.  For surely He is able to stop these things.  I've seen Him answer my prayers many times.  But this time He let something happen that could only seem to me to be destructive and horrible.

And even now, years and years and years later, I have to say I have never seen anything good come out of that occurrence.  Unless you count the stuff inside me.  There was good that came out of the experience, if by "good" you are willing to admit the result that I learned to rely on God and to trust Him even in the midst of disaster.

I remember sitting in a bush in our yard (yes, I was inside the bush.  Like if you have every watched "It's a Wonderful Life," the part where Donna Reid's character is in the hydrangea bush.  I had this little hollowed out core in one of the bushes on our yard.  That is where I was).  I remember sitting in there and ranting to God or myself or the bugs and leaves, I don't even know now.  I remember ranting about how God had let my foster siblings be moved somewhere strange and unknown to me, how He let them be moved only "God knows where" and then I stopped.  My words silenced me.  And I heard a quiet voice inside say "Yes.  God knows where."

I don't know why that was enough for me at that moment.  Truly, I could still see no good in the situation.  Nothing had really changed.  But I heard God telling me quietly that He did know where my foster siblings were.  And somehow in that moment, it was enough to turn things around in my heart.  Because the voice was quiet, and gentle and sad.  And sovereign.  All at once.

And it turned around my hear and it turned around my life.  Because sometimes you come to a point where the rubber hits the road and a choice must be made.  Follow or turn back.  Trust or check your baggage off the flight.  Surrender your life, or decide you'd rather manage things yourself.

And at that point I had an indication of what I had/was signing myself up for.  Most of us get married and have NO IDEA what we really are signing up for.  Later on we think... hmmm... I really had no idea...  And with marriage, we have a choice to bail out at any time.  No matter what we say "at the altar."  And when it comes to God, yeah, He only wants people who want to be with Him.  So He will always leave the final choices up to you.

In that moment under the bushes, I had gotten a revelation of what I signed myself up for with God.  I realized, through the experience, that praying or "doing good stuff" or whatever it is, is NOT some kind of payment to guarantee God will bless your life (read: let you do what you want and get what you want).  I realized that God is not in the business of raising hot house roses untouched by blemish and unable to grow or bloom unless in a specific, very controlled environment.  And that His process of pruning and trimming, of allowing the elements in to shake us that we might grow strong in Him, I realized that this process might at times allow even for things painful.  Very painful.

C.S. Lewis wrote "We are not necessarily doubting that God will do the best for us, we are wondering how painful the best will turn out to be."  And really, that says it all, doesn't it?  God, I know you are only going to do the best, but how much is this going to hurt?  And am I still willing to accept "the best" or do I really want off of this ride, right now!

Does anyone truly stop believing intellectually in God when something painful happens?  Is it not that we become so angry, realizing that God would allow painful things "just" to allow us in turn to be transformed by the experience.  I have heard people say that they can not believe in God, for how could God exist if He could allow these things to happen.  I have never really heard that statement without an undercurrent of anger.  For logically, does the existence of painful experience rule out the existence of God?  Isn't it more accurate that faced with a God who says "I allow this to happen to you, that you might turn more fully to Me, that you might grow stronger in trust, that your character might be purged and refined," we say defiantly "If THAT is how extreme you are about this whole thing, I'm really not interested.  I'm so not interested that I'm going to pretend You don't even existed."

I'm not saying here that there are not people who sincerely question God's existence.  Yes, of course, some of us have these intellectual questions and doubts that deserve some sort of logical reckoning.  I'm talking most especially about people who do believe God exists.  Until something bad happens to them.  And I'm not mentioning them to condemn them in some way.  Because I understand pain.  And anger.  I do.  I have been there, at least in the anger.  And for just about all of us, the question is not if we have been angry at God, but rather, how long we were angry.  Which leaves us pretty much on equally questionable footing, no?

Back to my story...  I found myself under that bush, angry about life, and a mite peeved at God too.  Faced with a choice.  Follow or go my own way.  We used to say at the school I taught in up north that the students came to school cause we were the best show in town.  By which we meant that even though in school the students were disciplined and expected to work and learn and live with authority, they still choose to come to escape the boredom, loneliness, and emptiness of what was going on in life at home.  They might complain bitterly.  But yes, they STILL CAME.

And when it came to God...  it was the same way for me.  Because bad, painful and destructive things happen if you believe in a God who allows them for your growth, or if you believe in a random universe with no anchor or reason or help outside of yourself and a few close relations or friends.  And seeing it that way, what rational choice is there?  And seeing it that way, what warmth or comfort for the soul is there but to just run to the Everlasting Arms that never leave us or forsake us, no matter what pain we are in?

In those arms, I trusted.  In those arms, I made it through the pain and sadness and difficulty.  And I found myself on the other side whole, and not harmed.  I had been hurt, yes.  But I had not been harmed.  Because safe in the arms of God, no permanent harm can come to us.  In this God I had grown to trust, even in the storm.  He has never let me down, even in the illness and death of my child.

This is long enough.  I'll continue it later...

Monday, May 9, 2011

Mother's Day

I wanted to put up a couple of pictures here, but not of Joel this time.  Well, I'll put up a couple of those too, no doubt.  I wanted to put a picture of my Mother's Day gift here, on my blog.  And a picture of my calendar too.  Yeah. My calendar.

I bought this beautiful calendar.  I love it.  Calendars should not only be functional (as the one I have in the hallway phone nook is, complete with whiteboard and space for "planning.") but I firmly believe they should be beautiful.  As the one hanging in the dining area is.  I needed to get two calendars this year, so that I'd have both function and beauty.

And then I take my beautiful calendar, the one with the "ocean motif," and I write a verse or two for the month on it.  It definitely takes it down a notch or two on the visual aesthetics of it.  But it ratchets it up a notch or two as soul food.  And that is very important to me.

So I am including a photo of my calendar and the verse, my apologies for my ugly penmanship.  All my school-hood I constantly heard the same thing about my handwriting/printing.  Here you shall see just what the teachers meant.  But I love the picture, and I love the words.

These are the words for the month of May.  And they seem to go well with my Mother's Day gift as well.  Two Christmas's back, my in-laws gave me a lovely figurine of a mother holding a baby.  And yesterday my husband and son gave me a figurine of a mother holding a child about Joel's age.  Here is a picture of them.

Doesn't that say it...

I carried Joel from his birth until his death.  And now he is carried by God.  And as the verses on my calendar say, God has carried me, in the same way, from my birth until now.  And will carry me, even to grey hair!

The figures make me sad, because there won't be a new one for me to add.  My carrying Joel is over.  Yet the figures give me joy too.  And I remember how it felt, to carry my son in my arms in just that way.  It was very beautiful.

And now for some pictures.  I will try and include one of Joel in his favorite place, my arms.  He had trouble really sleeping through the night with out his night time meds.  But he also established a clear habit.  He would fall asleep almost every night in my arms.  Sometimes he'd be in his bassinet at sleep -time.  Sometimes the meds would work and he'd just drop to sleep.  But most often, he would just stubbornly wait for me.  If I was grabbing a snack or finishing a chore at that time, or whatever.  He'd lie in his crib before or even after the meds and keep awake until FINALLY I arrived.  And as soon as I picked him up, we'd snuggle in.  He'd immediately close his eyes.  And be asleep in five minutes.  It was very beautiful.


Thursday, May 5, 2011

Guilt & Regret.

...  Yup.  That says it all.   ... There have been a few things I want to "say" on this blog.  But I haven't really gotten that "right moment" to do it.  And then when I do get on here, I often feel like I should write something about how I am doing.

And then I think that how I am doing is a pretty boring and redundant topic.  And I don't always feel like getting into a lot of detail either.  But then, I keep saying that I want to be transparent.  And being transparent doesn't just mean only saying things that are real and true.  It also means not deliberately leaving out some of the information...

I am doing ok, as I keep saying.  I AM sleeping well.  I am able to get out of bed in the morning, and I don't even have a huge struggle with that.  Two things that to me seem pretty indicative of doing ok.  I also do take somewhat regular showers, and most days I get out of my jammies. 

All these "signs" are good for me, because the last thing I need is to stress about "barely coping" with life.  And I feel peaceful about it.  I'm trusting God to get us through, and He is.  I don't think I'm going to need medication.  Surprise.  And I don't think I'm going to go to counselling.  Because I think the support of my friends and family and the listening ears there will be enough for me.  But we will see.  I'm not going to rule anything out at this point.

Having said all that, I will admit that as most of us do, I have been struggling with guilt and regret.  It really is a normal part of grief.  I know that.  And it is a pretty average reaction of mothers to just about any negative circumstance in the life of their child.  Terminal illness and death being under the category of "negative circumstance," I guess what could I expect?

While Joel was alive, I tried to live so that I'd have limited regrets.  Always acknowledging to myself that I would not be able to completely prevent them.  And I couldn't.

I work them through, when they attack me.  I go over the little and big "guilts" that I have.  Some of them are silly.  I don't know if it is exactly guilt, but I feel absolutely HORRIBLE about the two times I was holding Joel and one of his bones "buckled."  How I could have seen it coming and stopped it...?  I'm not sure.  But I grieve these moments.

And some of the moments I have to forgive myself for.  No mom is perfect.  Impossible.  And when your child is healthy and grows up to be a happy adult, you forgive and forget the mistakes.  The times you were impatient or selfish fade away.  But when the child involved dies, it makes these sins monumental events...  Strange, isn't, how grief is.  Live or die, your behavior was the same.  But live or die, makes a big difference on how hard or easy it is for you to forgive and forget.

Which brings me to the regrets.  Closely related to the guilt.  But not exactly.  One thing I have been struggling with is two weeks of Joel's three week hospital stay in the fall.  The two weeks where he was kept in because they had begun treating him for meningitis and thus had to finish it.  Even at the time, my emotions about this were difficult.  But life was going on, and now some of those emotions remain, still in the file, waiting to be dealt with.  And Joel's death makes it worse.  I'm remembering being stuck on IV antibiotics and then put in isolation so we could not leave our little cubicle.  And Joel was alert, aware and even sometimes playful during those two weeks.

So, if only.  If only I had insisted it was adrenal and not allowed them to treat for meningitis.  If only I had stayed in hospital for the evenings and nights, so that Joel didn't have to be alone there.  Now I hate the thought of him lying there in the lonely evenings.  As I always did.  But I loved him during the day and then went home to "survive."

Most of these regrets are tied to a ridiculous feeling or attitude.  These regrets about how much I held Joel or played with him or whatever.  When I really examine them.  Because I really want to hold Joel NOW.  I really want to play with him NOW.  But I can not.  So the mind goes to the times when I COULD hold him.  And then finds any time I could have but DIDN'T.  As if I could have somehow "stored up" more holding him.  As if by holding him for 8 hours a day instead of 4 hours a day, then today, THIS day, I wouldn't miss him as much.  It's all rubbish!  Then was then, and now is now.  If I had held him 16 hours a day, I'd still be sitting here now, missing him so and wishing I had held him 18 hours...

It really is just the mind trying to "fix" the missing in my heart.  Trying to come up with a solution to the feelings.  Like we humans do.  What went wrong, so that next time we can do it different?  It's a useful reaction when you have broken your arm and are reviewing workplace safety.  It's not really productive in the instances where things beyond your control happened.  Or when you'll never get that "second chance to do it different." 

And so now, it is a waste of effort and energy.  And also a part of grieving.  Because the missing will come.  And with the missing, the earnest wish to turn back the clock.  And change something, anything to somehow make yourself feel better.  But I know that I lived the last two years well enough that any changes I could make would be small, and pretty insignificant.  And would not, in the end, make this sadness any easier.  There would just be other moments I'd cry over instead.  I know that.  But I still have to work out these feelings...

Whew.  I don't know who is still reading this with me.  Not exactly "fun," eh?  So if you are still here with me, in this pit of sadness, then please climb out, go eat a sandwich and read a book or watch a sitcom.  Lighten up.  That is honestly what I do when my cup of sadness has overflowed for awhile.  I can do this.  And I DO do it.  Also a sign I'm doing ok.

But even more so, that I still take this sorrow and grief, and regret and guilt to God.  I feel it, I think it through to the TRUTH, and then I give it to Him.  Not much of a gift, really, eh?  But still.  I just say, "Here is how I am feeling Lord, and it's so hard and sad, but if You can make anything of this, You are welcome to have it."  And so, I find that while I might feel sad, regrets, pain, and guilt, I truly NEVER feel despair or hopelessness.  I never do.  I'm pretty sure that is God's doing.

Last of all, before I do my favorite thing and put up some pics, I'm just going to say, you don't need to bother writing to tell me what I good mom I was to Joel.  I wish that would do the trick.  But I'm afraid it doesn't do much...  unless you can come over and listen to me share each moment in person.  Because regrets are specific moments, not generalities.

 I DO appreciate your words of encouragement.  I DO appreciate hearing that you are praying for me.  And I ABSOLUTELY LOVE hearing how Joel's life touched yours or how something I have shared means something to you.  So please feel free to encourage me in this way. 



Sunday, May 1, 2011

Snow

Today is May 1st, and this morning, yes, as forecast, the ground is once again covered in snow...  ugh.

Today at 2pm there is a memorial service that Children's Hospital puts on to "remember" all the children that they have worked with who have died this past year.  We could have ask them to defer this to next year if it was "too soon" for us, but I really wanted to go. 

Particularly because I will be in a group of people who have at some point this last year or two found themselves plunged into the same county I now find myself.  Even if everyone is too shy or tearful to speak much or meet, I think I will feel a feeling of great solidarity while I'm there.  I know our experiences are all different, but it is a powerful thing, to find people who share such a huge life transformation.

It has been another hard week.  Of course.  What did I expect?  I don't know.  I don't know if I can say this has really been harder then I expected...  if anything, there are some ways it has been easier (that's easier than I EXPECTED, because I expected it to be brutally difficult).  But it has been very different than I expected, though really, most of my musings on this sort of stopped at the point of his death and immediatly after.  I don't think that I could really look much beyond that point, or imagine it or worry about it.

Getting back to it, it has been another hard week.  I won't get into all the struggles and ups and downs here and now.  All in all, I have to say I think I'm doing ok... I'm mostly dealing with this with God.  And when I forget, He's pretty grace-ful to me.  And when I say I'm doing ok, agian, standards are pretty low.  But I think the fact that I can mostly sleep and that I can get up in the morning, and that most days I can even do at least one "fun thing" with Caeden, is, well, good enough for someone who has lost a child.  That I can still laugh, make decisions about cooking most days, occasionally organize or clean, I think that is all a good sign.

In spite of all this, I will say it yet again, like a whiny child.  This is hard.  Yes.  Hard.  So, please remember that May is still drop in month.  It is one of those inevitable things that about 3 people suddenly want to "book" the same day, and then there are other periods of nobody.  So please don't think if you want to visit, but someone else is already, that it means I am overwhelmed by visitors.  It is just the nature of life that it goes in "rushes" and then quietness.

But at this time, I love visitors.  I appreciate being able to work out my grief by chatting with you about Joel.  My precious Joel.

I'm not getting much "done."  I feel bad when Steve comes home from a day of work (for someone has to support us) and ask me what I have done.  I say "not too much."  Which means I did get up.  I did fed Caeden and watch him, and maybe play with him or take him out.  I did do the dishes, and I did make supper.  Then, most days, the day is ended.  And all I have to "show for it" is what most working mothers do when they get home from work...  I feel bad about the days where this is true.  For my work load has been literally cut in half, or more.  And what do I have to show for it?

And I feel guilty that Steve has somehow managed to work all day and earn the wage that pays for me to stay home and be sad, listless, distracted, or restless, and basically unproductive all day.  Why is this grief thing so different for us both?

Sorry.  I'm babbling today.  Mostly this blog is a pathetic attempt, because once I'm done blabbling on and on in what I am ambitiously calling a blog post, I will put up a few more pictures of Joel.

So, here are some pictures.  And I seriously AM going to make up a chart for myself and put in on the fridge...


Yeah, excuse the tape-y face.  Beautiful suit and then tape!  But let me tell you, I hated changing that ng tube so much (Joel too) that I would just keep plastering on more tape rather than risk it being pulled out!