Monday, July 18, 2011

Grief


I physically cannot cry. I cried for about 5 minutes today, but that was all. And it does not make sense to me at all. How can I not cry? My baby is gone. How am I not sobbing?

I have a masters degree. I first learned about the 5 stages of grief in my high school sociology class with our basketball coach, coach Padek. We read Tuesdays with Morrie. I don't really remember discussing the book in class, but I do remember that grief has stages. (It was also in that class that we learned about the terrorist attacks on 9-11. I was a senior in high school. You can do the math). I then went to Baylor and learned more about the 5 stages of grief. And then I went to grad school at Baylor and learned that Kubler-Ross coined this model while working with terminally-ill patients in the late 1960's. The stages are fluid, and not every person experiences every stage. And just because you move from one stage, like denial, does not mean that you won't circle back to it again.

So yesterday I was in denial. Like Matthew said, we spent the whole day looking at cemeteries. Every time I looked in the back seat, I pretended like the car seat was still there. I rationalized it to myself that maybe James was with a relative and they needed the carseat. Why else would it not be in my car anymore? Which that doesn't even make sense. The only nights I ever spent away from James were the two nights that I was forced to go home when he was in the hospital. I had back surgery when James was 6 weeks old. I was supposed to spend the night in the hospital that night, but I just couldn't bring myself to be gone from him that long. I thought about it, and the largest chunk of time I ever spent away from him was 10 hours. And that was torture.

So now I have spent 55 hours away from my dear boy. (Edited: I lost an entire day when I first posted this. I seriously forgot it was Monday.) Nothing makes sense anymore. It doesn't make sense that he would be spending time with anyone else- I would have never let him! Those of you that know me in real life know how desperately I love James. He was my everything. Wherever I went, James went. If James couldn't go, I didn't go. Which is probably so incredibly unhealthy.

Then it hit me. The anger. It rushed in, all at once last night. And man, was I angry. I'm still angry tonight. How utterly unfair it all is. Why my sweet James? Out of all the babies in the world, why him? I'm angry he didn't have a chance to fight. I'm angry that the chemo wouldn't have worked. I'm angry that we only got 2 days at home. I'm angry that there is really only one place doing research on his type of tumor. I'm angry I have a hand mold kit sitting on my dining room table that I didn't even have a chance to do. I'm angry that the funeral home asked me his educational level today. I'm angry that he will never say "Momma". I'm angry he will never walk, talk, sing.

But the truth is, I'm angry because of all the things that I wanted to experience with him. It's so incredibly selfish. Because Jamesie didn't need any of those things. James only needed my love. He needed to feel safe and secure, which he did. The anger is from a selfish place. And not that I'm not justified in being angry- I think any good counselor will tell me that it's ok to be angry. And I own my anger.

And the Guilt sets in. I feel so guilty for being angry. I grieve for James. But I also grieve for those of you who have emailed me that have lost your sweet children. For those of you who lost babies in the middle of the night, without a chance to say one last "I love you". I grieve for those of you who lost children after long, hard battles with terrible diseases. I grieve for you who lost children who never took a breathe in this world. I grieve for those of you who desperately want your child and are unable to have them. Those of you with empty arms and no baby to hold.

So I feel guilty that I am complaining that I only had 8 beautiful months with James, when I know full well that there are so many of you who feel like 8 months is double, triple a lifetime.

Thank you all for your comments. I read them all. One of you sent me (emailed me? I can't remember) a quote that you had heard. It has meant so much to me today.

"Dear Lord, I would have loved to have held my baby on my lap and tell him about You,
but since I didn't get the chance,
would You please hold Him on your lap and tell him about me."

And I am so lucky that I got to hold James in my lap for 8 months. I always thought that at some point, I would be like that mother who made tapes for her daughter when she was dying. I would record every piece of advice, every subject, that I wanted James to know if I were to go before him. I never thought that he would go first. I wish I could have gone first. It must have been so scary for him to go first. And although I know he was not alone, I so very much wish he didn't have to go.

So we will celebrate James on Wednesday. We will celebrate his life, his legacy. We will celebrate the person that he was. I'm planning on wearing a giraffe print dress. I don't want people to wear black- I never dressed James in black one day in his life!

We are working on a charity to donate to in honor of James. I know we are so behind on this. In lieu of flowers, we would really prefer that people donate to a charity to honor James. (Which if you feel led to donate in honor of James somewhere, please do! I really feel like James' legacy is one of love. And if you feel like to honor James means volunteering your time or money at your local children's hospital, we would love for you to do that.)

Thank you all for letting this blog be an outlet for me. I hope that by being honest about my feelings, it will let someone else who is going through this that it's ok to feel all sorts of emotions. There is no one "right" way to grieve. And even though we take comfort that James is with Jesus, we still miss him so and grieve our loss. We miss him so very much.

51 comments:

  1. I am at a loss for words...my heart is so heavy for you. I wish there was something I could say or do to make this just a little bit easier. Your sweet baby boy makes me smile every time I see his little face. I love his hair!!! I thought my boy had a lot of hair, but nope James has got him beat! I am sorry you had to deal with inconsiderate people...just keep James close because that is all that matters. Give your worries over to God and he will lead you through this difficult time. Praying for peace and comfort.

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  2. I can't take any of your pain away, but I hope that God will give you peace and comfort. You are in my prayers. Your James is loved!! Thank you for sharing your journey.

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  3. Thank you for your honesty and willingness to share your story and sweet baby James with the world. Your faith and strength are inspiring and it is perfectly acceptable to feel angry, guilty, etc. My prayers are with you and your sweet angel.

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  4. I wish nothing but the best for you, there's no feeling left unturned in this. For days now I have shared your story with my family and friends, they wondered why I looked so raw and tired. Dear James continues to touch so many, thankyou for sharing his story, it will carry on forever.

    I love that quote you mentioned, it took my breath away.

    Much love,
    xxMB

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  5. I am glad you are still posting. I'm still reading. The story of James in your life is far from over and I can still read in all this your tenacious desire to remain positive in the midst of so much wrong. For some reason, I'm mindful of how, when this story began, you were talking about what a difficult year lied ahead. By no means do I think this process will end precisely a year from now, (that is so artificial and strange) but I know you will continue to need prayers for strength and endurance to help you as this healing can make you weak. I'm not nearly as good at praying as I wish, but I will continue praying for you. Thanks for giving us the reminder and opportunity.

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  6. Thinking of you both and of sweet James, always.

    Everything you share resonates so strongly with those of us who have also lost children. No matter what the circumstances, or the child's age, there is a devastation common to each loss. We are not supposed to outlive our children.

    About guilt... it is a natural part of the grieving process as you described it, but I hope you know that nobody out here would begrudge you one single moment of your time with James in this world.

    My Hannah died almost 8 years ago, when she was 5. (Our car was rear-ended at a traffic light, also injuring me and my younger daughter.) On the one hand I am so glad she had five years with us, and I feel awful that James wasn't able to experience things like school and running around with friends and being a big brother. On the other, I see her friends continuing to grow, becoming teenagers, even friending me on Facebook... and she should still be here, sharing this.

    It's a process. Your words bring those first few days back vividly, and I wish I could help you through it now. Just know that you are absolutely not alone with anything you're feeling right now, and you're in my heart always.

    Hoping my Hannah is watching over James right now.

    Take care.

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  7. Kara- I think it is precious that you only ever spent 10 hours away from your Jamesie.Once again, I feel kinship. When I went to the hospital to give birth to my second son last July, our first son, who was 5 years old had never spent the night away from us.
    Like so many others, I wish desperately that I could ease your pain but there really are no words to do that right now.You are an amazing Mother and I hope that you experience the joys of motherhood again some day. You are on my heart and in my prayers each day. - Andrea Skelton

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  8. Like so many others, I have been a long-time follower of your precious Jamesie. I work with a friend of yours and couldn't help but become hooked on weekly picture updates of your beautiful son. If I was having a rough day, I would simply ask her to pull up your Facebook page and my day was instantly better with one glance at his hair! I can only echo what so many others have said about your courage and strength. Your son has left a lasting imprint on so many that will not be forgotten. Thank you for sharing your journey, and you will continue to be in my thoughts and prayers.

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  9. You lift us up, because although James was your baby, he became our baby too. I pray to God each day with my girls that He will continue to give you the strength you need. To continue to guide you, and to let you know James is okay. God bless you always.

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  10. You need to take the hand mold tomorrow and get James' hand prints! I am sure there is a family member who can help you with this and it is something you will cherish forever.

    Ask if they will also make hand and foot ink prints. You gave James a party, let him give you his prints as your favor.

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  11. My heart continues to ache for you. I know exactly what you mean when you say that jamsie shouldn't be with anyone else but you, as much as I want everyone to love my son..I used to actually feel a pang in my heart when someone else would even hold him! I hurt that this is how your first big seperation went. Cry to jesus, fall on jesus. Thank you for continuing to share so all of us strangers know how to continue to pray for you.

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  12. Oh Kara ... it was NOT unhealthy that you spent all your time with your baby .... that is what a mommy should do .... and you will never have regrets about that. He was a blessed baby to have you as a mommy! My heart just aches for you ... and the depth of pain you are experiencing as a mom ... I am holding your precious beautiful painful heart before our Comforter tonight ... and continually!

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  13. Keep writing, Kara! Not only is bit so very therapeutic, but you are giving a gift to others who have experienced many of the same emotions. I will continue to pray for you as you walk through this difficult journey.

    Pam Terry

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  14. You are constantly on my mind. I pray for you both all throughout the day. You are the topic of most of my conversations and that makes me so sad for you. I hate that you have to be the topic of conversation but we all so appreciate your openess. It allows all of us to pray for you in the right way, and when we tell people about you, we not only get them to pray but also get the opportunity to witness to those that don't know God. Your story is horrible, but it is moving people. James has made me love more deeply on so many levels and for that I'm so grateful.

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  15. This song by Alter Bridge made me think of you and James, today. My heart is still breaking for you and I think of you often everyday. I know we don't know each other, but I hurt for you. {{{HUGS}}}

    "In Loving Memory"

    Thanks for all you've done
    I've missed you for so long
    I can't believe you're gone
    You still live in me
    I feel you in the wind
    You guide me constantly

    I've never knew what it was to be alone, no
    Cause you were always there for me
    You were always there waiting
    And ill come home and I miss your face so
    Smiling down on me
    I close my eyes to see

    And I know, you're a part of me
    And it's your song that sets me free
    I sing it while I feel I can't hold on
    I sing tonight cause it comforts me

    I carry the things that remind me of you
    In loving memory of
    The one that was so true
    Your were as kind as you could be
    And even though you're gone
    You still mean the world to me

    I've never knew what it was to be alone, no
    Cause you were always there for me
    You were always there waiting
    But now I come home and it's not the same, no
    It feels empty and alone
    I can't believe you're gone

    And I know, you're a part of me
    And it's your song that sets me free
    I sing it while I feel I can't hold on
    I sing tonight cause it comforts me

    I'm glad he set you free from sorrow
    I'll still love you more tomorrow
    And you will be here with me still

    And what you did you did with feeling
    And You always found the meaning
    And you always will
    And you always will
    And you always will

    And I know, you're a part of me
    And it's your song that sets me free
    I sing it while I feel I can't hold on
    I sing tonight cause it comforts me

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  16. As Kara's father, I always knew she was special. I just didn't know how special until now. They say that the metal that is refined with the hottest flame is the strongest and purest, that is certainly true. Watching how you handled things over the last few weeks was an reaffirmation of humanity. Your strength, determination and vigor to fight for James' life were beyond call of duty.

    As a physician, I have always be the "fixer". In this case there was only one "Fixer", and he had other plans for James. The most I could do was try to help you and Matthew through this and make sure that James was as comfortable and as free of pain as possible. I know that James has been healed by God (a.k.a.the Fixer). Some would say cured, but healed implies intervention by a force stronger and more powerful than human to me.

    While it was uncomfortable to watch James have to go through this trial, it was even more disturbing to have to watch the two of you endure the pain. At least James had pain management.

    I am new to this social medium concept. i can see a lot of good, and I can see the darker side also. I am willing go give it shot to see if I can help make something have meaning for some one else.

    I hope is that those of you who have followed this pulitzer prize winning blog will remember that we were just two families experiencing our time of pain. I challenge you to reach out in what ever way you feel best to honor my grandson James Camden Sikes, so that his memory lives on.

    My marching orders are to help Kara and Matthew get more research on these Atypical Rhabdoid Tumors. Maybe the War on Cancer needs some new ideas and perspective. We have made a lot of progress. My prayer would be that no family would have endure pain and loss. We all know that is a huge challenge. We can however chip away a little at a time. Just as water eventually wears away the hardest rocks.

    I Love you Kara.

    Pappa Dub

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  17. You sound like one of the best moms this world has ever known. For you to show that kind of selflessness in confessing how selfish you felt, I and everyone else who has been lucky enough to hear James's story have no doubt in our minds that James was luckier for 8 months than some people are in 80 years. The love you have expressed for your sweet son is an inspiration to all of us. You aren't alone.

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  18. I have been in tears for days and am praying for you... I wanted to let you know a song that helped me
    Beverly Mitchell .. Angel
    It is a beautiful song and I really think you might like it
    We all love you so much may God's peace wash over you

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  19. Have you guys thought about creating a charity in memory of James that helps fund research into this kind of tumour?
    I'm just wondering if it could be a really lasting legacy of the impact his 8 months (and specifically his last few weeks) made on the world.

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  20. I found you on cbtrf, we are fighting with atrt.
    you touched me so much, James is a beautiful baby and so his parents! I try to belive that everything is happening for a reason. I wish you peace and comfort, and i am praying for you.

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  21. I want to reach out and hold you, offer some comfort if I can, and so I offer this. Your sweet boy has touched my heart, his light surely does shine bright. Thank you for sharing him this way.

    http://www.youtube.com/watch?v=v2EZUw2mvjs

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  22. Kara and Matthew, I am yet another follower of your blog that has never met you, but you have touched my life profoundly. Your strength and courage throughout this ordeal has astonished me. I am not a parent, but if I am ever so blessed, I hope to be just like you. Your complete and total devotion to sweet James made him a happy baby who spent eight months wrapped in pure love. How comforting it must have been to have him home for the last days. Unlike many of your followers, i have to admit that I have always been somewhat skeptical of religion and the afterlife. However, your story has forever altered my view. There is no doubt that James had a higher purpose and is in heaven playing with his giraffes and watching over his beloved mommy and daddy. Your faith is an inspiration, and I thank you for sharing it. You are truly special people.

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  23. I have been thinking of you, your husband and your precious son for weeks now (a mutual friend posted your link on Facebook just after James' diagnosis). I have been praying for you; I've never prayed harder for someone I didn't personally know ever before. That said, something you wrote tonight stuck out to me- "It must have been so scary for [James] to go first." About a month ago, I read a book called "90 Minutes in Heaven" by a pastor named Don Piper. In it, he describes the 90 minutes he was in heaven, after he had been killed in a car accident outside of Houston. He describes the transition as being peaceful, beautiful and without the slightest sense of pain or sadness. He talks about people he saw and their complete joy. He even says he was upset that God's will for him was to be brought back to earth to experience years of pain and surgery to fix his body. I guess, I'm writing this because I believe and hope that James entrance into heaven was not scary, but peaceful and calming. He had your and your husband's complete love on the Earthly side and God's amazing, perfect love waiting for him at the other. He went from your loving arms to God's. That thought brings me comfort as I think of your little James, and people I've lost. Something else which has been with me for a couple of days now is this thought: Of all of us, God knows best how you feel- He watched a beautiful, perfect Son die through no fault of His own. I'm sure as you struggle through this time, Our Father is looking over you, sad for your loss for He Himself knows your pain. When you cry out, even when you aren't able to cry out, He knows and comforts you. I wish I could hug you. We've never met, but as the mother of a baby boy also (and I'm the same age as you, being a senior during the 9/11 attacks), James' story has changed the way I think of every moment I have with my son. I will continue to pray for you and your husband for the peace and solace that only our God can provide.

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  24. I am a stranger, with no connection to you other than finding your link from a friend who asked for prayers for you.

    You are an amazing woman, and your husband sounds like an amazing man. You have every right to be angry. My words will mean nothing to you but just know that you have strangers everywhere praying for you and for your family.

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  25. I am so sorry for your loss, praying for you and your family!

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  26. You are a beautiful writer. Thank you for letting us in on your emotions and true struggles. Somehow your honesty fills me with hope even as I feel your grief. I pray you sense that hope for yourself and that you are able to see how much strength God has given you. I am so sorry for your heartbreaking loss. It sounds like you have a good grasp on the grief cycle---allowing yourself to be angry is certainly very healthy! Please keep writing! You are an inspiration.

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  27. I am a new follower and just wanted to let you know that I am praying for y'all! I have a 9 month old son who is my whole world. I am definitely hugging him tighter and cherishing every moment I get with him on this earth.

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  28. I have written and erased half a dozen comments in the last few days. Really, what do you say to a family that has lost a child? There aren't any good words! It just plain stinks. I cannot even begin to imagine how you are feeling. Our family is lifting your family up in prayer, hoping that with each passing day the pain is lessened. Thank you for sharing your beautiful son with the world.

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  29. I am sending prayers your way. You will never know why this had to happen to beautiful James,but just know that you are witnessing to those that read it. I am sure there are many being led to God through this blog. What a blessing it is.

    Have you considered taking the hand mold kit to James and doing that now? I did something similar with my mother (she also had a brain tumor) and I am so thankful I did. It is just a thought and you need to make the right decision for you.

    Know that you are in our prayers in NC.

    Lisa

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  30. Total stranger who's been following for some time and from what I have read you both are such strong amazing parents that James could've had. Kara you are a wonderful woman and I hope you continue to find strength during these hard times, you have a wonderful husband that is amazing. I continue to pray for James and your family. I love seeing his pictures with that big ol smile and all that hair!! He's such a beautiful sweet angel. I hope and wish for nothing but the best. I wish you comfort in these tough times. ::hugs::

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  31. So many prayers and thoughts of love are coming your way. May you have strength and peace within you.

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  32. Thank you for sharing your angel son through your blog. You both express so clearly the love a parent has for their child. James Camden was as blessed to have you and your husband for parents as you were to have him for your son. You are an amazing family. I feel that reading about your Jamesie this past week has helped me to be a better mother. Words cannot express how sorry I am for your loss; mere words cannot dull the pain in your soul. I pray for you and your husband in your terrible shared grief. May you continue to turn toward each other and God.

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  33. I am so sorry for your loss and am keeping you both in my prayers. I live just up the hill from Camden, the part of London you liked and made part of Jamesie's name.

    That quote is beautiful.

    Cxx

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  34. I continue to keep you in my prayers and read your blog each day. I just wanted to reach out and give you :hugs:. I think of you, your husband, and James often....although we've never met. Thank you for sharing James with us.

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  35. I am truly at a loss of words and sorry just doesn't cut how sad I am for your family and for the loss of your sweet, handsome, smiley James. I watched the video of James and it broke my heart that God took him from you. While there are mothers that never got to hold their child, or might have only had 2 months, you have every right to be angry/complain; the fact remains that no matter how many months, years - we will never fully understand why God needed them so soon. Your precious Angel and family will be in my prayers.

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  36. Kara and Matt,
    I went to JHS and had Calculus with Kara. I found your blog from a link posted on Facebook. I have read every entry and cried and prayed for your family. I have a 5 month old son and now treasure him even more because of your blog. So sorry for your loss. May God bring you peace and comfort. A song that you may already know- "Blessings" by Laura Story- is one that has brought me comfort ever since I have heard it. Still praying for your family.

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  37. I am so so sad that you are going through this. I am a mother of three children on earth and six in heaven (five lost to miscarriage). My first born son was killed by a car aged three. He wouldbe/is twenty-one now.

    Please do not compare your grief to anyone else's. I never got to see my little ones lost in the womb but I grieve for them, so much promise. I had Andrew for three years; I heard his voice, watched him grow, in fact I think I know what kind of man he would have become. I grieve every day for his loss - no less today than the day he died.

    Remember that James lived his alloted time, he was born, lived, died. His life was not cut short. At Andrew's funeral my uncle read a very short verse (I can't remember from what or who) that said simply "We do not judge a book by the length of its pages, rather by the contents thereof". It sounds like James' life was full of love and laughter. The contents of his book were wonderful.

    Finally search out on the internet a song called Precious Child by Karen Taylor-Good. The words will say everything you are feeling and give you comfort.

    Caroline (from the U.K)xxx

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  38. Kara and Matthew,
    As I read over the comments, I am most touched by all the lives you and your family have touched. Kara, your father's note brought me to tears, knowing that today is my daughter's 30th birthday and while I am so thankful for her life today and every day, I am so very sorry for the loss that has come to your precious families. I cannot imagine your grief, but I am profoundly sure that the Lord hears each word, catches each tear and will continue to bear your hurts and sorrows until HE returns to take his children HOME!
    We will be thinking of you all tomorrow and the days and weeks ahead and lifting you up.
    Love in Christ,
    Rebecca

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  39. Hi Kara and Matt,

    I have been following your story since someone posted asking for prayers for you. I am so sorry for your loss. I can understand why you would be angry...you lost your precious little boy. That smile of his makes me smile. Please let us know what charity we can contribute to, I'd love it if our money could go towards more research in memory of him.

    Know that we're sending lots of thoughts and love to you (even though we're strangers). My heart breaks for you and your family and I wish there was something I could say to make things even an iota better. Thank you for sharing your little guy with us.

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  40. Kara,
    Although I do not know you, my heart aches for you and your family! I can't possibly imagine the pain you must be experiencing but wanted you to know that you and Matthew are always on my mind and forever in my prayers!! Thank you for sharing James with us as he's touched my heart in a powerful way!!! -Sarah May

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  41. I do not know you, but I got your link from an old friend. My heart breaks for you and your family, and I know that no words will comfort you. But please know that I am praying for you and ask that God will cover your heart with protection and peace. ~Katie

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  42. I continue to be so moved by your honesty. As a mother, I know I would share those same feelings. I would want my child back too. No one can know what you're going through and the heartache you're experiencing. Please know that my husband and I continue to read your blog every day. We think of you, Matthew and James often (I feel like you're constantly on my mind because as I mentioned in a previous comment, I have a son James' age). We pray for you EVERY night. Thank you for continuing to write. I find writing very therapeutic, and you're helping so many other people in the process. You are carrying on James' legacy. Sending love and prayers from three total strangers in Atlanta.

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  43. Dear Sikes Family,
    I was lead to your blog by a friend whose little boy is also battling ATRT, she asked for prayers for James. My heart has been aching for you both since learning of James' passing on Saturday. I have cried many times reading this blog as I cannot imagine what you are going through (I am a mom of 2 little girls). Just know that many people are lifting you up in prayer to our Lord every day. We will never meet (unless perhaps randomly at a Baylor event - I am a 98 grad), but I am so honored to be able to pray for you all and so grateful that you chose to share James with the world. We are all better for learning about him. We will all live each day with more purpose, hold our kids a little closer and walk closer in faith with God because of James. I pray God's blessings on you and your families in the weeks and months ahead, that you will find comfort in our Savior's love and peace knowing that James is safely with Him (Luke 23:43, Philippians 3:20-21, 1 Thess. 4:13-18).

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  44. My heart is still breaking for you both and your families, and I am praying for often for all of you. James was and is a perfect boy, and you are so blessed to call him your son. Grieve in whatever way you can and whatever way you wish.

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  45. i continue to pray for you every day

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  46. Continuing to pray for you...

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  47. Kara- Like many people, I know you through a friend of a friend. Through your blog I have followed you and Matthew through this heart breaking journey. You both are such an inspiration to love and faith. I have cried many, many times for you both and your families, but what a blessing to be able to share your story and faith to so many. The world is a better place for knowing James. And inspired by the love you gave to him. Thank you for sharing. My God be with you during this time and show you the way.

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  48. Life is brutal in its blows, more so to some than others, and the loss of your beloved James is that, brutal. It's very, very hard to continue to run with endurance the race that is set before us, but we must do it anyway, even if we are able to run the race only moment by moment, stopping along the way to catch the breath that shock and grief stole.

    Continued love and prayers to the Sikes family. I hold you in my heart and join so many others in praying throughout each day for you.

    You will be in my thoughts all day tomorrow. I will be praying that God brings his power, strength, and comfort to each of you.

    Know that James is remembered and that his loss is deeply felt and mourned even by those of us who did not know him.

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  49. my teammates in texas 4000 shared this with me (i am riding in 2012).

    no words can speak. rest in peace. we all ride for james camden sikes.

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  50. I am praying for both of you...

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  51. I volunteer at a shelter for abused and neglected kids. I went and picked up one of the babies and rocked them and held them and sang to them and read them a book in honor of James today.

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