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, September 6, 2011

Hot tubs in a Better Place.

So, I will go with the business stuff first, before I get into the complicated emotional stuff.  A super generous friend from my PBD support group has offered to sell Jun her pulse oximeter for a small fraction of the original cost.  It is a beautiful offer, and I am grateful.  That means I'm still looking into a CPAP machine. 

Now I'm going to head for deep water here, folks...  Tricksy, as Gollum would say.

I don't really like feeling like I have to qualify everything I say, but I know that in a sense I do.   It is so easy to misunderstand words.  I know I do it all the time, so why shouldn't anyone else?

Here is my qualifier for the following blog:  When I write it, I'm talking about FEELINGS... I know the difference between feelings and facts.  Also, it is hard to believe, but true, that feelings are complicated.  It is quite possible to vacillate between two different feelings, or even to feel TWO different ways at one time.  Some of this is like trying to nail Jello to a wall.  Please don't think that some of the thoughts and feelings I write here reflect a constant state, or even an attitude about God, or heaven, or whatever the case may be.

I'm going to be writing about what is a difficult phrase for me to hear.  And oddly enough, it is NOT a difficult phrase for me to SAY MYSELF...  I hope this blog will partly explain why that is.  If it doesn't, don't worry about it.  You really don't have to understand everything I say.  Even if you are just aware of the complicated thoughts and feelings of someone grieving, and try to remember that a hug is often even more comforting than a phrase.  I don't always remember that myself.  So I don't really expect anyone else to.  Still, it is good to remind ourselves of that, no?

So yeah, as the title suggests, the difficult phrase for me is when people say Joel "is in a better place."  It often leaves me without a response.   How can I explain to you that something that makes me feel happy also sometimes makes me feel WORSE...??  It is something that I tell other people ALL THE TIME... how happy Joel is in heaven...  So why is it hard to have someone say it TO ME?

Well, there are two parts to it.  One is easy to see.  It has to do with the fact that heaven seems too far away right now.  That part of it has no connection to the fact that Joel is happy (which is good) and everything to do with the fact that I hear "heaven" and feel like I'm never going to get there.  Oh yes, I know, I am mortal, and I'll be old before I know it.  But you try to tell me that you could think that even one year was not a long time to go without seeing someone you love.  Imagine how incredibly far in time it might feel to think of 20 or 30 or even 40...  And sometimes when people tell me Joel is in a "better" place, all I really here is that he is in a "far" place.  Remember I said "sometimes," NOT "all the time"....  :)

Then there is the other part of it.  You could say that it is the entirely selfish part.  I'm OK with that.  I can admit to you that in even a parent's love, there is a selfish part.  And I sometimes feel ways that are selfish.  But I also would challenge you to examine if you might not struggle with the same feelings, if you were in my place.

Because there is even a part of Joel being in a "better" place that is hurtful to me, in a sense.  I'm NOT, absolutely NOT saying that if he has to be somewhere else, I'd want it to be anywhere else but with God.  I am so happy and grateful that Joel is free, healthy, happy and loved.  I told you, you can feel more than one thing at a time.

And the other side is that it hurts to have your child removed to a better place... Think about this.  Imagine that someone came to you and told you that there was a better home for your child... just go with me here.  Imagine they describe how another family could love your child, give them all the opportunities you couldn't.  This family could give them the best health care possible, the best education.  This family would never be unfair or lose their temper when they disciplined your child.  And then they would say "Doesn't that make you happy, that we are taking your child to a place that is much better than what you have offered these years?  Don't you agree that your child would be better off there, instead of with you?"

Imagine, really imagine what you would feel and think about that.  I think there might be a pain in hearing those words...?

I really wanted to get a hot tub for Joel before he died.  It was one of the very, very few things I could to "extra" for him to make his life more comfortable and enjoyable.  I'd never hand him car keys, or send him care packages in college, or, well, use your imagination and fill in the blanks.  The hot tub was pretty much it, and it felt pretty important.

It was very, very sad for me that he went to heaven before I could wrangle that.  Of course, I know that the heavenly version of a "hot tub" would be super duper much better.  Really, would I have wanted to put that off, just so he could enjoy this earthly hot tub?  Well.... honestly, even though it is selfish, yes, of course. 

 If you had a rich relative who was planning to give your child a pony for Christmas, and all you could give your child was a "Chutes and Ladders" game, wouldn't you think "Oh, I better make sure to give them the game before they get the pony, so that I get to see them enjoy it and be excited about it!"  You surely wouldn't say "Oh, forget the measly game that is all I can afford.  Just skip straight to the pony, I'm ok with that." 

And so even though I am so glad that Joel is no longer suffering, and even though I know heaven is a better place, I still mourn that I never got to "give" him a hot tub...  Would you feel any differently, if you were me?  I don't know.  I really don't.  Which is part of the reason that I don't even know what to say when someone tells me that Joel is in a better place.  Maybe they really would be so unselfish that it never hurts them?

But in my heart, when someone says that Joel is in a better place, it is hard not to feel like they are saying that the place he had here was not that great.  That the life he had here, with us, was not good. 

And I do know that some people DO feel/think that way.  I'm actually fairly perceptive, and while I can tell some people don't think that way, other people practically reek of this attitude.  If I sense any of that behind their words, it is particularly hurtful.  Because I know that I can never compete with God or heaven, really, I'm not trying to.  But Joel's life here was also mostly happy (as is the case of any one of us.  All of us feel pain or suffer at times, in between the good times).  And there was a lot of love here.  Hugs and cuddles and spending time with him.  The life he had here was a good one, and it was the best I could offer.

And remember that when I say that something is difficult to hear, I'm not saying that it is untrue or invalid.  I'm not saying it is wrong.  I'm just saying that my emotional reaction is not always what you might expect.  And that as true as those words are in my heart and mind, still, they often do not lessen the pain I feel because Joel is not here.  So remember, the most comforting thing you can do is sit and let me cry.  And give a hug.  Hugs are good.

2 comments:

  1. Sending hugs your way! I am so sorry for your loss.

    I like to think of our loved ones looking out for us in heaven. Imagine Joel sitting in a hot tub, playing in the bubbles and saying, "Hey Mom, don't worry. I am fine and watch over you every day. It's like I never even left." It is now our job as those left behind to live our lives in honor of our loved ones memory. Time is fleeting. 20 years or 80 years passes in the blink of an eye. It may sound like a long time but really isn't enough to do all of the honoring that we want to do.

    I know it is hard. Thank you for sharing your struggles and know that complete strangers are on your side and sending healing prayers your way.

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  2. As a mom of 3 PBD kids, I know "my day is coming" when I too will have to reconcile these feelings. As a woman of faith, I know that God makes no mistakes, that His ways are higher than our ways and that one day all of my questions will be answered. All of that gives me comfort now but I don't know how much comfort it will lend when "my day comes" (times 3). I hope I can just handle it with a little grace knowing that God trusted me with these precious gifts for a reason regardless for how long.

    I continue to pray for the strength of our PBD moms and love that we have safe places to express our feelings.

    Love Ya fellow PBD mom!!

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