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!





Friday, September 10, 2010

Rubber Band

I don't like August anymore. It was never my favorite month, and now I really don't like it. It has been a tough, tough month, and the first week of September was no picnic either. Just a total flashback to last year.

So I'm gong to sit here and try to be open and honest, though it's not too easy. Again, about stuff I've mentioned, but I'm going to re-deal with, now that it's all so fresh...

These times with Joel, the ones where he is obviously unhappy, these are the ones I'm specifically talking about. There are lots of other difficult things about life with Joel, but these are the ones that make me feel like a rubber band in my spine has been slowly tightened, a little bit, each day.


It feels like I'm a compound bow, or a ballista, the tension just slowly being ratcheted up notch by notch. Emotionally it is so strong, that I can almost feel it physically, everything is tight, tight, tight. How much farther can it go before it snaps and who knows what is release like a bullet flying out of me? Or maybe I'm a balloon so filled with air that I'm going to pop.


Yesterday and the day before were good days. Joel not only smiled, he even laughed a bit. He once again cooed and burbled and interacted with me. Days like that, the tension so suddenly releases and now I feel like a limp balloon, or an over stretched elastic or spring. I just flop around the house, limp and boneless. Happy, but useless. It's like you spend hours riding horse, or squatting to pull weeds. Suddenly you stand up, or get off the horse, and you feel like you are jello. Your legs are wobbly, and you just need to sit down! I fed my children and kept them clean, dry, and warm. That was it. Period.

So much of this last month is so much like last year. Even to the point where my prayer at night was no longer, "Please God, just give me one more good day," to "Please God, don't let him suffer." Because a part of me started to long for the day when it would just all be over...


It is so hard to write those words. It seems so selfish and so ... cold. To admit that I could actually feel like I just wanted my precious boy to die so it could all be over for us all. But I said I'd be honest.

I suppose it's not unlike when you just want the band aid YANKED off quickly. Hurt me and be done with it! Or if you ever have had those nightmares where you are hiding from something/one terrible and you keep having this urge to just surrender because the running and hiding are so awful themselves. (Yeah, I have pretty vivid dreams) Terrible times are ahead and you just want to "do it and get it over with."

It makes me feel so guilty, to almost "look forward" to Joel dying. I truly start to imagine the day when I can just grab Caeden and head out the door. No more 2 hour feeds, or cleaning a pump, or packing it up if we want to go anywhere as a family. No more meds, the thought of being able to grab the whole shelf full and chuck them all into the garbage!!! To go to bed exactly when I'm tired and not have to wait for Joel's tummy to empty and then hook up a bunch of equipment. Never be awakened at night again to the sound of seizures. No more phone calls with questions to doctors, no more appointments, no more hospital stays. To take a trip whenever we want. Overwhelming relief and freedom.

Does that sound terrible?

The thing is, I never think this way when Joel is happy. Heck, I desperately WANTED the CPAP, even though I was told it would make life so much more work for me. And while Joel was doing well and happy, it felt like nothing much. I was like - Oh PLUH-LEEEESE! Give me a break, this is nothing! That's how I feel about all of it, when Joel is doing well. 99% of that time I really don't complain about it all.

But when Joel is not happy, then everything weighs on me. Everything seems to suck life right out of me. It slowly gets harder and harder, the pressure is ratcheting up, the pain and pressure increasing, and I start to long for it all to end.

Me, longing for a time that just isn't so like living life in an emotional trench while WWI goes on around me. Day and night in a muddy, cold trench. I've got trench-foot and the rations are not too good. A wasteland surrounds me, and the enemy assaults me from a distance in a seemingly constant barrage... I can't wait for this war to end.

Which is a bit of a fallacy. I long for the relief, but Joel's death will release me from one battle and into another. Hardly a true end to the war. Just a different stage of it.

I know that, but months like this I can't bear to think that way. Maybe it's a coping mechanism. Maybe it's just how anyone feels when someone they love is sometimes suffering. Maybe it's trying to put a bright face somewhere into it. But when it gets like this, I almost need to be able to say "Soon rest is coming. Soon the tension, stress, struggle, soon it will be over. We'll be free." To say "When this ends, a worse time will come, one where I long to go back to THIS time every single day, I didn't know then how lucky I was" -- to say that is just something I can't face when it is so hard already. Believing that feels like it would just finish me right off.

I was speaking to a friend yesterday, a friend who has lost her child. She told me there would be some sense of relief, even though she admitted to wanting her baby back so very badly. It made me feel a little better. One thing that really makes me angry at times is that the thought of relief is attached to so much guilt. It was good to know that I'd at least get what I paid so dearly for, in a manner of speaking. I don't know if you can understand all this unless you've lost someone to a difficult death, but I hope you can get some sense of what I mean:

First there is suffering, sorrow, pain, longing for relief and guilt for wanting it. Then there is relief, and grief, sorrow, pain, longing for your loved one, and guilt for feeling any relief. So crazy at as it sounds, it's good to hear that at least the relief part of it isn't totally a myth.

I've really laid a heavy on you with this one. I don't even know if I would have been able to write it, if Joel hadn't had a couple of "good days" now. Several good days in a row give me the strength to face the feelings and let them all out. Once the "rubber band" feeling wears off. Of course, they also leave me feeling a bit rough, so yesterday, when I wrote most of this, I felt pretty tired, and, well, a bit rough, for most of the rest of the day. Good thing it was a good day!

Anyway, I feel bad leaving you with all this negative emotion, all this sadness and guilt, and, well, agony really, just there - BLAH. Like I emotionally puked all over your car of life, and I sure hope you've got a good air freshener in there so you don't have to smell it all day long. I don't know if one of those little trees will cut it. You need some FEBREEZE, man! Go out and watch a silly movie or something. That's what I'm going to do! And play some Lego with my 3 year old.

"This is my comfort in my affliction, for Your word has given me life." (Psalm 119:50) I'm still thankful for that.

6 comments:

  1. Karen...Just wanted to say how sorry I am and how much I wish I was there to give you a hug.Call me anytime. XoXo

    Sarah D

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  2. Karen...believe me when I say that those feelings of longing for relief are not wrong...they are normal. In fact...you told me this yourself when I mentioned that I felt that way myself sometimes.

    It is soooo very hard to admit to something like that because of the guilt that accompanies it. But...there were times when I would be changing Graham and he would just be crying...almost screaming in pain or discomfort and how it would almost drive me insane. I would scream out myself with all those thoughts of wishing it would all just be over soon. I just could not see how I could go on much longer like this.

    I would scream, I would resent my sweet boy for "doing this to me", I would cry, I would want it to be over, and then I would hate myself for even thinking it. And then I would just pick up my crying Graham and just hold him, and cry, and appologize to him and to God for even thinking these horrible, terrible things.

    And yes...there were times when my holding him did not comfort him...he would be more content if I put him down. Or there would be times when I would try to hold him and I would have to put him down because he would just head butt over and over. Soooo hard when I could not even comfort him.

    Sooo...I could try to tell you to not feel guilty, but I don't think that would work. I can tell you that you are not alone in those feelings. And when your child is called home there is a sense of relief. Just as they breathe their last breath, you can finally exhale. But that sense of relief is not only a selfish feeling because I believe that Graham felt a sense of relief himself. I have always said that I am thankful that I no longer have to worry about Graham's health...I know that he is now in very good and capable hands.

    That absense of worry has been replaced with heartache. But how often do people say that they would gladly take the place of a loved one if they knew that it would take their pain away. Well...I feel that is what happened when my Graham went home to be with the Lord. His pain was gone and mine began. Not like I didn't have pain before watching him suffer and worrying about his health...but this was a new kind of pain and a pain I will live with for the rest of my life.

    It hurts and it hurts bad...but there is now rest for both Graham and for me. I long for him and I want him back sooo bad. But the Graham I want back is the happy one, not the one that was in pain. If having him back meant that his pain had to come back too, I could not wish for that.

    I know that it is hard and I wish that I could help you through it. The best I can do is let you know that I am praying for you to remain strong. Know that the enemy will find cracks in your armor and you will falter at times, but God will stand you back up again.

    Take care my friend...I am thinking and praying for you often.

    Tracy
    'Angel' Graham's Momma

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  3. I thought of you this morning in church. One of the moms in our church sang this song. I asked her to send me a copy of the words which are below. It turns out it's sung by Amy Grant. It's called "Better than a Hallelujah sometimes".

    God loves a lullaby
    in a mother's tears in the dead of night
    Better than a hallelujah sometimes

    God loves a drunkard's cry
    A soldier's plea as he questions why
    Better than a hallelujah sometimes


    We pour out our misery
    God just hears a melody
    Beautiful the mess we are
    The honest cries of breaking hearts
    Are better than a hallelujah.



    A woman holding on for life
    A dying man giving up the fight
    Are better than a hallelujah sometimes


    Tears of shame for what's been done
    The silence when the words won't come
    Are better than a hallelujah sometime.


    Better than a church bell ringing
    Better than a choir singing out…….Singing out



    You can search this song on Youtube. I think the words are beautiful. Give it a listen and know that I am thinking of you and praying for you, but more important that God is listening. You are not alone in this. You have friends and family that are surrounding you.

    Susan.

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  4. I completely understand your thoughts and feelings here. I suffered through a very long and painfull illness with my mother. She was only in her 40's when it started and by 56, when she finally passed away..she was in so much pain that I prayed for her to die just to save her from the torment....but it killed me to do it. I felt guilty for asking that...but then did feel relief afterward. But like you said....then comes the grief...a new battle...but for some reason...dealing with your own pain and grief is so much easier than watching a loved one go through pain that you cannot "fix". I think how you are feeling is completely normal and most of us who have cared for a terminally ill loved one understands this. I'm so glad Joel is having some good days. I hope September is a wonderful month for all of you.

    kd

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  5. Sorry to hear this old friend.

    Always praying,

    Zac

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  6. Oh and as for flu season, don't forget to suck a zinc lozenge at the first hint of a bug! - Zac

    ReplyDelete