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..


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!

Wednesday, March 23, 2011

So cosy in Jesus' arms

The awful, terrible day final came for me. The one I have dreaded.

This morning, when I got Joel up, his breathing seemed to get a bit a bit worse. And unlike the previous days, it did not improve with suction, R/T, or position changes. It was noticeably different, in fact. And my heart started to sink.

I was not alone, some very good friends where there, folding my laundry, and Joel's respite worker had just arrived at 10:30. I checked Joel's sats with the monitor. My heart sank again. It was as I was fearing. He heart rate was way too high. His O2 was way to low. This would be the point in the hospital where they would ask me if I wanted him intubated. Which I didn't.

So I let Joel's respite worker hold him and care for him, while I phoned Steve and phoned P/C.

Steve arrived home at about noon. I sent Caeden with one of my friends and sent everyone else home.

We held Joel in turns. He was breathing very fast, but he appeared very comfortable.

The P/C doctor arrived a little later. He checked Joel's lungs and confirmed the worst. His left lung now sounded like it was filling up. The antibiotics had not helped.

We took off the O2. And then we spent the next 5 hours just taking turns cuddling Joel, and singing, and crying, and praying, and giving kisses, and holding hands, being silent or talking. We took Joel into our bed for much of the afternoon and just cuddled on either side of him.

Finally, his breathing started to get a little irregular. And then, he just stopped breathing... He took a few little gulps here and there for a minute or two. And his eyes looked so peaceful, as he just faded away.

We had Caeden brought home and let him see Joel one last time. My parents stopped in briefly. And then we phoned for the funeral home to come pick him up.

None of this was as horrible as I had expected. There was no blood, no fluids. Joel's face just turned into an alabaster doll. And when the funeral director came, he just carried Joel out in his arms, all wrapped up in a blanket. He didn't even cover Joel's face.

It was not horrible, but it was all very hard. And now I face the part that is really difficult. The part that is really horrible for me. I am glad for Joel, that he is no longer sick, but healed. It is for myself that I feel overwhelmed by the grief and sadness.

For once I stop typing this blog... what do I do? There is no little boy to cuddle tonight... Do I watch TV? Do I read a book? What do I do? I have prayed myself out and there is an end, finally, to how many tears you can cry in one day. So how, now, do I feel this empty space in my arms...?

Lord, please take good care of my boy.


  1. Karen, I am so sorry to hear about Joel. I am just so glad that I was able to be there today to say good-bye and have one last snuggle with him.

  2. Karen I am so so very sorry. I didn't even know that Joel was sick. As I read your blog, I can feel your pain and can relate to everything you said, and the tears came flowing down my cheeks. Just know that Joel is now in heaven pain free and happy. I pray that God gives you the strength to make it through this difficult time. If you ever need to talk about anything please don't hesitate to ask. I know I had a hard time talking about my feelings with everyone after Isabella died, and the only people I thought understood were those that had been through the same thing. Sending lots of love your way!!!

    Olivia and Angel Isabella's mom

  3. The Lord brought your family and little Joel to my mind often today and I felt like we should pray that Joel would be comfortable, pain-free, and that God would wrap His arms around your family and hold you close. I cannot imagine how you must feel but know you are loved and we are praying for you all.

  4. I'm so sorry this day has come but I'm thankful that you and Steve were together and that there was peace for you and for Joel at the end. May the peace that passes understanding rest in your hearts and minds tonight and in the days to come. Love from CT.

  5. Myron and Bonnie KlaassenMarch 23, 2011 at 7:33 PM

    We are so sorry for your loss. May God grant you the peace and comfort of His love and of friends and family. We continue to hold you up in our prayers before the Throne of our Heavenly Father. Hugs.

    The Cord

    We are connected,
    My child and I, by
    An invisible cord
    Not seen by the eye.

    It's not like the cord
    That connects us 'til birth
    This cord can't been seen
    By any on Earth.

    This cord does it's work
    Right from the start.
    It binds us together
    Attached to my heart.

    I know that it's there
    Though no one can see
    The invisible cord
    From my child to me.

    The strength of this cord
    Is hard to describe.
    It can't be destroyed
    It can't be denied.

    It's stronger than any cord
    Man could create
    It withstands the test
    Can hold any weight.

    And though you are gone,
    Though you're not here with me,
    The cord is still there
    But no one can see.

    It pulls at my heart
    I am bruised...I am sore,
    But this cord is my lifeline
    As never before.

    I am thankful that God
    Connects us this way
    A mother and child
    Death can't take it away!

    -Author Unknown

  6. I have never met you. I have chatted one or twice with you on facebook. I feel that I have a connection with you because of my own little boy who is 2 and a half. I am so sorry and wish I could be there to help because it is so hard for me to think about the day that I will have to someday face with my own son. My prayers go out for you.
    Scott Sinex

  7. Hi Karen and Steve,
    Our thoughts and prayers are with you today. We are thankful that your sweet little guy was able to go to our loving saviour peacefully.
    Call or email if you want anything tomorrow, okay?
    love you lots and lots,

  8. As the mother of a special needs boy that has numbered days as well I am sitting here pouring tears reading your blog. God BLESS your soul and comfort you. What a beautiful testimony and story you have to share. Yet bittersweet the glorious and peaceful transition you describe is breathtaking and sad yet heart touching moments you shared in his last hours are unbelievable. BLESS you BLESS you BLESS you. I will say a extra special prayer for all of you this evening for comfort and peace. I am so touched by your ongoing testimony...these children give us gifts that are truly unmeasurable.

  9. We're sending lots of love and hugs and prayers.
    Heather & Geoff

  10. We were a pretty somber group when the church gathered together for prayer tonight. How deeply and fully our hearts sorrow and ache for you all. How our hearts are also filled with such joy for Joel - God has already wiped away his tears, God has alread sung over him, God lifted him straight from your arms into His own. Such sweet sorrow, such hope even as we sorrow. We love you all so much, and feel so humbled by how you opened your hearts up to us and allowed us to journey along with you this last while. Whatever we can do, whatever you need, your brothers and sisters are here and willing to help. Our hearts and prayers are with you. Our Father, the God of all comfort, has His everlasting arms beneath you, and we are trusting Him to carry you close to His heart tonight.
    Love, on behalf of your church family,
    Pastor Dave

  11. Oh Karen and Steve,

    I was at bible study tonight and Ken and I spoke of and prayed for you both and for Joel as he was so very sick. It was not until I came home, that I saw that Joel had grown his wings and went home to be with God, and Jesus, and my Graham, and all the many PBD Angels. My heart just hurts more than I can say and tears roll down my face. Here is one little boy that I have never met; yet, I feel like I know him so well. I am so very sad for you and wish that I could just make it all better. I am just so, so, sorry.

    I do thank God that he went peacefully and that you had that extra cuddle time. Know that I am thinking of you and praying for you. I am only able to wipe away my tears when I picture both of our Angels running and playing and laughing in their beautifully healed and perfect Heavenly bodies.

    I know that you may have seen me post this poem before...but I thought I would post it here. This time; however, it comes straight from 'Angel' Joel to you.

    A Letter From Heaven

    To my dearest family, some things Id like to say.
    But first of all, to let you know, that I arrived okay.

    I'm writing this from heaven.
    Here I dwell with God above.
    Here, there's no more tears of sadness;
    Here is just eternal love.

    Please do not be unhappy just because I'm out of sight.
    Remember that I am with you every morning, noon and night.

    That day I had to leave you when my life on earth was through.
    God picked me up and hugged me and He said, I welcome you.

    Its good to have you back again, you were missed while you were gone.
    As for your dearest family, They'll be here later on.

    I need you here so badly, you are part of my plan.
    There is so much that we can do, to help our mortal man.

    God gave me a list of things, that he wished for me to do.
    And foremost on the list, was to watch and care for you.

    And when you lie in bed at night the days chores put to flight.
    God and I are closest to you....in the middle of the night.

    When you think of my life on earth, and all those loving years.
    Because you are only human, they are bound to bring you tears.

    But do not be afraid to cry; it does relieve the pain.
    Remember there would be no flowers, unless there was some rain.

    I wish that I could tell you all that God has planned.
    If I were to tell you, you wouldn't understand.

    But one thing is for certain, though my life on earth is over.
    I'm closer to you now, than I ever was before.

    There are rocky roads ahead of you and many hills to climb;
    But together we can do it by taking one day at a time.

    It was always my philosophy and I'd like it for you too;
    That as you give unto the world, the world will give to you.

    If you can help somebody who is in sorrow and pain;
    Then you can say to God at night....My day was not in vain.

    And now I am contented... that my life was worthwhile.

    Knowing as I passed along the way I made somebody smile.
    So if you meet somebody who is sad and feeling low;

    Just lend a hand to pick them up, as on your way you go.
    When you're walking down the street and you've got me on your mind;

    I'm walking in your footsteps only half a step behind.
    And when its time for you to go...from that body to be free.

    Remember you're not going...you're coming here to me.

    Author: Ruth Ann Mahaffey

    Sending you many prayers of peace and may Jesus wrap His loving arms around you tight tonight and every time you are hurting.

    God Bless you...my sweet, dear friend. Joel (((Hugs))) and Graham blow kisses to you.

    'Angel' Graham's Momma

  12. Karen
    in my thoughts. Lots of love.xx

  13. I don't have words to say right now but know that you and your family continue to be in my thoughts and prayers.


  14. Karen and Steve...Iris Linkletter here. hurting for you, praying with you, weeping for the family. Bless you as you hang onto each other and learn to breath in this different world. Huggs Iris

  15. Dear Karen, I don't know you personally but came accross your blog some time ago and have been following ever since, praying for you all along the way. No words could be good enough, but please know your little boy's life and your constant strength in this situation have touched my heart so very deeply. Im crying right now, reading this post from you, and feel an ache as if we've met, but I know this is the heart of the family of God. I will continue to pray for you all. May God bless you with an incredible peace and refresh you with his tender loving arms wrapping around you and your family. He is making all things new (Rev 21:5).

  16. Karen, I wish I could give you a great big hug. I am so, so sad, but I am glad that Joel was surrounded by love at home as he left this earth. My thoughts are with you.

  17. Praying for peace and comfort for you family. So sorry to read about your loss :o(

  18. I've never read your blog until today, and I am just tearing up for you. Lord Jesus, please cradle her and her family during this very difficult time. Amen.

  19. Karen and family:

    This is truly a very sad time for you! After losing both of our little babies to DBP, our lives have changed. We want our story to help people see Jesus too!

    My heart is hurting for the pain I know you are going through. It will not get easier, just better to deal with! We just lost Averi in January of this year, and it still hurts!

    May God grant you peace and rest at this time! Comfort for those that don't understand, and those that just need that comforting hand.

    We that have been through this are here for you if you wish to talk sometime. Call me anytime. 573-356-9368!

    May God bless you all!
    Love, Amber Owens

  20. Dear Karen,
    Saying "we are sorry for your loss" hardly feels like enough. I can only imagine all you have been through and all you must be going through now.I know we have been wrapped up in our own lives for such a long time now, and I appologize for not being there to help you along the way. I never mentioned this but when I held Joel back in August of 2008 I felt that he was special somehow. I almost said it but I thought it may have sounded a little weirod, plus what baby isn't special right? But now I understand. It's like he was an angel that would be with you guys for a little while then he would return home and always stay an angel. Your family is in our prayers and we really do love you guys. Let us know if there is anything we can do.

    Vicki and Dominique

  21. It was a priviledge to meet your family.Less than 2 years ago I was in your shoes and the most encouraging thing I can tell you is this: If you praise Him, He will lift you up. When the tears are flowing and your heart feels like stone,when nothing seems normal anymore; if you praise Him, He will lift you up.
    Joel is dancing for Jesus while all of Heaven's angels rejoice and attend to him.Frieda

  22. I come via LFCA and wanted to let you know that you, your precious angel boy and family are in my thoughts. I am so very sorry for your tragic loss. What a blessing that your son was cradled between his loving parents when he left earth.

  23. I just found your blog today through another blog I read and I want you to know I am so sorry for the loss of your beautiful little boy. I too believe in the Lord and His almighty love and that Joel is now whole in the arms of the Lord. Even so, being left behind is the hard part and I will be praying for you and your family in the days to come.