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!





Saturday, March 26, 2011

Peace at midnight

I know people must really be praying for us. I can feel it.

Nights are very hard. It is hard not to lie in bed and start to be consumed by "what ifs?" and regrets. Maybe if I had brought Joel in as soon as he needed daytime O2, it would be different. Maybe if I'd asked for IV antibiotics. Maybe if I'd worked to sit him up more in the months before. Maybe if I had turned him more... It's amazing how long this list can get.

All sorts of these thoughts come to you when it is midnight and you miss your child so much. And so you walk yourself through it all again.

How Joel didn't really seem any sicker than other times when he had a "bug." How he'd needed daytime O2 a bit other times and been ok, and we didn't want to live at the hospital every time that might happen. How Joel didn't seem as comfortable sitting up for long periods anymore, and we wanted his life to be happy. How the oral antibiotics had four days to work, but didn't seem to help... working through all the steps of the last month with him once again. And most of all, how I'd also be feeling so much regret if he had died in the hospital because I had brought him there.

It's hard to fight these thoughts. Even when you work through it over and over to the same conclusion. You just want your child back so badly. And as a parent, you feel so responsible for everything that happens to your child. Even when they are terminally ill with a disease that doctors can not fix, you feel as if you somehow could have done something.

But I know you are praying for me. And last night I had a good talk with God as I struggled with these thoughts. I really felt Him saying to trust Him with it all. I felt Him reminding me that nothing that happened in Joel's death was wrong for Joel, that we had let Joel go to be in the best place possible. I really felt Him saying that He was pleased with how I had cared and loved Joel. And then I fell asleep feeling His grace and with a song playing in my head and heart. I felt peace again. I even think I was smiling...

I have just felt so much peace through this. I know that the struggles are not over and that I will have to keep relying on God to give me His peace. But I know He is here with me, and I have felt His presence and His peace so strongly.

3 comments:

  1. Oh Karen...I am so glad that you feel the peace of God's love all around you! I have said it before, but I think that one of the best things about are children being in Heaven for us as parents is the complete and total release of worry. You no longer worry about their health and there IS a complete peace that come with that.

    Yes...we still struggle with the "what if's" and the "I wish I had done this". And you can never escape from the pain of missing them so much...and the longing to hold them again.

    You are standing on solid ground with God as your foundation and He will lead you through this. He will be there to wipe away your tears when they flow and He will allow you to smile and enjoy life. He will make it known to you that He and Joel ARE always with you!

    All God's Blessings, Joel (((Hugs))) and Graham blow kisses to you.

    Tracy
    'Angel' Graham's Momma

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  2. This blog is one of the most profound and beautiful things I've ever read. I know God is with you.

    Love, Vicki

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  3. One of my favorite hymns is one I heard sung by my pastor's sister before she lost her struggle with cancer and went home to be with the Lord. Up until the day she died she praised the Lord for her healing and knew that even if she lost the struggle in this life that she would be whole in the next. She sung this song and believed it up until the time that she passed away. When I am struggling against this world, especially in the midnight hours, this song gives me comfort. I'm praying for you.

    "It's So Peaceful In the Arms of My Lord"

    1. This old world is full of pain and misery,
    Sometimes Satan stands and lashes out at me,
    But with Jesus by my side, I'll be satisfied.
    And it's so peaceful, in the arms of my Lord.

    Chorus: It's so peaceful in the arms of my Lord
    In his presence I am sheltered from the storm
    It's so good to have his spirit, it's so good to have his word.
    And it's so peaceful in the arms of my Lord

    2. When I come to the crossing of the tide,
    When I see old Jordan's waters deep and wide
    That dark river I'll not fear, for my Jesus will be near,
    And it's so peaceful in the arms of my Lord.

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