Tuesday, January 31, 2012

1 Million




At some point over the weekend, this blog hit its 1 millionth page view. That's really something.

It's a bittersweet achievement. Obviously, my life would be better if this blog did not exist. If this blog did not exist, that would have meant that no tumor existed for James to beat. It would mean he never got sick, that I never wrote a word about it, and that I could see him right now if I wanted to. 15 months and 2 days old, a bouncing baby transitioning fully into toddler mode, prancing down the halls and testing the baby proofing around the house. Bumping into the plastic edges Kara wrapped around the hard edges of the furniture and the sharp corners of the fireplace. Struggling against the protectors she put in each and every outlet. We took them off after he died, and the plastic pads left just a bit of residue on the painted brick of the fireplace, like the sticky film you can't quite get off when you peel a sticker off your car window. I keep expecting it to fade, and can't decide if I really want it to or not. I wanted to see him walk so badly that the lingering refuse of our preparations can almost trick me into thinking I did. Perhaps, I muse, he's just off playing in another room, or playing on the toy slide I bought at the garage sale down the street. It was too big to fit in the car so I dragged it down the street to the house, too lazy (and too incompetent) to disassemble it and pack it in. But the slide isn't there anymore either.

Kara started this blog. I still remember when. It was our second day in the PICU. We'd just learned about James' tumor, but didn't know what kind of tumor it was yet. Rhabdoid was an unproven hypothesis. She didn't tell me about it, she just started it with no entries. The lead photo was a picture of James from the zoo, perched on an old jeep, his hands banging on the spare tire mounted on the hood. It was from our second and last trip to the zoo. I was not in a good place that day, the world was spinning. I remember liking the title she chose of James beats the tumor, because it made me feel more like we had somewhere to go, somewhere that was not the cramped PICU room. I wrote the first entry on no sleep and with no plot, walking down the timeline of the hospital so far, not sure what else to do. I called it Day 1, because it felt like all the days before had been irrelevant. It still does. If Kara had not started the blog I never would have done something similar. In fact, I probably would never have said anything at all about any of this. I'm not big on sharing, but I took some kind of comfort in the anonymity of the blog. Once I started writing it felt good to put all of that pain somewhere other than me, innocuous words glowing softly in the light of a laptop screen instead of simmering in my head, festering into doomsday scenarios.

Though I didn't know it when I wrote that entry, I'd write in the blog every day between then and the day of James' funeral. In a way, I'm glad I didn't know it would barely be three weeks later. I don't think I could've handled knowing. I wrote late, after the doctors finished their interminable and intermittent rounds, relying entirely on Children's spotty wireless connection to upload my unedited thoughts. Going through them now I notice that typos abound. Kara wrote too, with a style completely her own. As I've said before, Kara and I are opposites. I looked forward to her posts, because I always felt better when I read them. I still do. Though you never really sleep on a schedule in the hospital, writing became my way to wind down and end the day. Once I wrote it, I could clean the slate and start filling it up with thoughts for the next day. It was a healthy catharsis. I'm not glad that this blog exists, but I am grateful. I needed it.

After he died, it became a place to vent and reflect. To talk about the grief of losing him and how that felt. We wrote less, and the subjects became grimmer. Graveyards and funeral homes replaced Disney and babies. A place to vent about all that was and never will be. Still, you kept coming. Thank you for that.

I do not know where you all came from. I do not know how all of you got here. The e-mails and comments indicate you are international and local, people I know and people from places I've never been. Scotland, Australia, Argentina, Canada, Puerto Rico, and more; scores of states that we have no ties to. I don't know who you are but I'm glad you found James. It has been overwhelming to see the feelings he inspires in other people. We have been blessed. With James gone, the way people feel about him and the way they remember him has become very important, in many ways, it's his legacy. I've heard the phrase that someone's death was "not in vain." I don't believe that when it comes to children. Children should not die. Every death is a waste of a life over before it began. I do believe that what you do with someone's death is important. Their death might always be in vain, but that does not mean that your response must be. They don't have to die for something for you to do something about it.

Thanks to this blog we've been able to do a lot of things to keep James' memory alive, and hopefully one day to help ensure that there are less memories made like his. We've raised $25,000 for James' fund and rhabdoid research. We were able to get Jamie the Giraffe named in his honor, and in doing so were fortunate enough that the person who won the family trip for picking the name chose to give it to Make a Wish Foundation. It's been humbling to see the things that people have done for James. Thank you.

I try- but do not always succeed- to thank you whenever I write here for your thoughts and prayers. They mean a lot. No one gets through something like this without a lot of support, and we have been very fortunate to have a lot of support. I have never felt like no one cared. So thank you for coming and thinking about us. Thank you for getting to know James.

59 comments:

  1. It's been a complete blessing to learn to know James through your blog. You're parenting him well, even now. Much love from another stranger...

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    1. Thank you. It's good to be called a parent.

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  2. Thank you.

    I happened upon this blog when I started my own at the beginning of 2012. I read every post & cried for you & Kara. I cried for James. Bad things happen to good people. I am sorry for that. You have both taught me so much through your words & you inspire me to take a look at what I have. Appreciate... love.

    So, thank you.

    Michelle (in Petawawa, Ontario, Canada)

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  3. WOW! 25,000! That's so wonderful! You and your family continue to be in my thoughts and prayers.

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  4. I can;t remember how I found your blog. I worked in Paediatric oncology and sometimes parents would accuse us of not caring, and I would always tell them they couldn;t be more wrong. Doctors, nursers, radiologists, OR booking clerks, secretaries etc all have strong hopes and ties to their sick patients and bad outcomes do come home with them with sadness, anger and deep sympathies for the families. I was the admin assistant for a brilliant orthopaedic oncologist who saved the lives and limbs of dozens of kids and adults (sadly he died at 47).Every day working with these kids was a gift to me. I was so privileged and honoured to work with these kids, medical teams and the families. Every child touched me in many ways. I think your son touched the lives of many and goes on to continue to touch people. His story is every parents worse nightmare and fear. That is happened to your boy makes the readers of your blog want to reach out and comfort you both and say how sorry we are because we can genuinely feel for you.

    Chania. Canada

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    1. We were very lucky with the care we received at James' hospital. Although I was often angry, I never thought no one cared.

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  5. I started reading because I was asked to pray for your family. And I did. Every day. And I do still. Every day. In the beginning I prayed for all the obvious things. In the end I pray for those same things. Hope. Happines. Freedom from pain. Joy. An beautiful, healthy baby. Yes, I still pray for a beautiful, healthy baby. Because I know there will be one for you. And I know you will have a lifetime to tell that baby all about James. And I know that beautiful, healthy baby will fill your arms again. And I know that beautiful, healthy baby will bridge the gap between here and heaven. Because I know that beautiful, healthy baby will be sent by another beautiful, healthy baby. Because in a way, Jamesie did beat the tumor. And in every way possible I still pray! God bless you baby James. What miracles you have inspired.

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  6. Aprendi a Amar James conhecendo seu Blog, deixo aqui todo carinho e respeito dos brasileiros.

    Andreia Fargnoli

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  7. I found you via an American blog about preppy style called Monograms and Manicures.I followed the link and was just so sad and moved by your journey, and I put you on my blog roll (I am in Australia) At the time my son who was about 4 months old was facing health challenges with his heart. Your blog just spoke to me and I think of you guys and hope you ok all the time. You story has moved many people you will never meet. x

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    1. I hope your son is doing well, I remember you commenting when James was sick. Thank you.

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  8. I think Faux has a point. Those of us whose children spend time in hospitals; those of us who have felt, in some small measure, the grief of seeing our child suffer - we especially are bonded to your journey. I can't imagine, don't want to imagine, the depth of your suffering. But it speaks to me.

    DeeDee
    www.KidNeedsAKidney.blogspot.com

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    1. It's not a journey anyone walks willingly. If this helps you, I'm glad.

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  9. Wow congratulations!
    This blog is wonderful, your journey is something i never seen before. James is an amazing child.

    Dani (:
    http://gummifontaene.blogspot.com/

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  10. i found your blog through a tweet from Angie Smith - http://angiesmithonline.com/. ive been following ever since. i have loved getting to know James :)

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  11. I found the blog via the blog Glamorously Newlyweed ... I'm from Germany :)

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    1. Glad to have you. Hope all is well in Deutschland.

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  12. Thank you for sharing with the world. You have touched so many lives with your Jamesie. Every day I'm more patient with my daughter because of y'all.
    Marissa in Tyler TX

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  13. I found James through some random blog I was reading that had a prayer request for him. I'm in Oklahoma. I have two sons whose birthdays are in October.

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    1. Thank you for your prayers. Kara's birthday is in October too. It's a good month.

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  14. I recently found your blog and have been so touch by your sweet family. Thank you for sharing James.
    and I agree...
    "I don't believe that when it comes to children. Children should not die. Every death is a waste of a life over before it began. I do believe that what you do with someone's death is important. Their death might always be in vain, but that does not mean that your response must be. They don't have to die for something for you to do something about it."
    xoxo from Utah

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  15. I have never wrote here before, but I have been following since Day 1 when I heard your story from a member of my birth group on BabyCenter.com. I think of your family every single day and check into the blog often for new entries. The story of James has inspired me so much to be a better parent in every area possible and to make sure I kiss and hug my little one every chance I get, because you never know what may be in store. I will continue to pray and check in on you all.

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  16. You and Kara continue to be in our thoughts and prayers. I've been following your blog since the day James died...which also happened to be the day we held a celebration of life for our stillborn, completely full term son, Jack. Thank you so much for taking the time to continue to blog...to see you continuing to hope and choose JOY means a lot to so many. God bless you and your entire family.

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  17. I found your blog through a prayer request but can't remember which one now. All I know is I'm thankful you still write so we can keep checking in on you. I feel so blessed to keep praying for you both, it brings me peace and hope it does the same for you. James was a doll baby and his first name is my son's middle name (from my dad) so it makes me feel close to you guys. Sending you hugs from Farmington Hills, Michigan! :0)

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  18. Matthew...I first found your blog when it was forwarded to me as part of a prayer chain in July. For some reason, our old Internet connection wouldn't let me post comments, which forced me to email Kara directly. Even though I have been emailing her and not able to comment directly to you, I just want yall both to know you are prayed for daily by our family. We continue to think of you, Kara and James all the time...
    Emily in aggieland

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  19. Nice blog, hi friend, i found that there is one website offering free puzzle games. Just take one minute to sign up then you will receive one free puzzle game. Its URL is http://www.684899.com/en/CosmicCreature/project_1.htm Click the below button of the page to get in. I've done it and now i am enjoying it. I've done it and now i am enjoying it.

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  20. I'm the same as mckennah above. I saw Angie Smith asking for prayers for James, way back a long time ago, and came to your blog. And I prayed for a miracle. I'm so sorry we had to 'meet'.

    But thank you for your sharing Matthew & Kara. I have two children, both with special needs. I often need to remind myself that my life is going perfectly according to Gods plan for my life. It is just very different from what I expected and thought was ahead of me.

    I live in Brisbane, Australia. And I will never, ever see anything giraffe related without thinking of your beautiful son.

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    1. I'm sorry too. We don't always get the plan we asked for. Thank you for your prayers.

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  21. I should be thanking you. Thank you for introducing your sweet little boy to me. Thank you for sharing your journey and allowing me to pray for you. Thank you for bringing the information to me about something I had no clue existed. You, Kara and James have been in my thoughts since I found your blog via a friend who blogged about it. Sending love and prayers from this military family stationed in Ansbach Germany!

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    1. I'm glad this blog encourages awareness. Thank you for your prayers.

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  22. I also wanted to say that I too never see a giraffe or giraffe print without thinking if James. Xxx

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  23. Matthew, not a day goes by that I don't sit here and think about you and Kara and sweet James. James reminds me daily to not sweat the small stuff. Believe me, I can be a big "sweat the small stuff" person. I have found myself saying "yes" to my kids more often. I don't get as frustrated by the handprints on the walls, dirty clothes on the floor, and spilled juice in the kitchen. It's strange that a family I don't even "know" can have such a huge impact on my life. Thank you for sharing James with me and for sharing your thoughts on this blog.

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  24. I am a lurker and often think of you. Last night my five year old son randomly named his stuffed giraffe James and it made me smile. On another note, we may be related...my mother's maiden name was Sikes- and we have several James and Jamie Sikes in our family:)

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    1. If your family is from the American South (Especially Louisiana) we almost certainly are related. James is a family name. I'm glad to hear there are more giraffes out there.

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  25. I'm so sorry you've lost your gorgeous Jamesie. I'm so sad that nothing I can write or do can bring him back to you. I've lost babies at 6, 20 and 29wks, and it's hard journey which me and my husband are still trudging through. I found your blog through Blogger's 'Blogs of note' while I was at work. I was in tears almost immediately; at first I thought the happy title of the blog meant a happy ending, so I am so sorry it didn't happen that way. Take care.

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    1. There's not always a happy ending, thank you for stopping in. I'm sorry for your loss. I hope you all have a happy ending.

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  26. I believe I found you through "Blogs of Note" on Blogger. I am so sorry you lost your beautiful boy, thank you for sharing with us a little glimpse into his and your life.

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  27. Nice blog, hi friend, i found that there is one website offering free puzzle games. Just take one minute to sign up then you will receive one free puzzle game. Its URL is http://www.684899.com/en/CosmicCreature/project_1.htm I've done it and now i am enjoying it. Would you like one? Just take one minute to sign up then you will receive one free puzzle game. I've done it and now i am enjoying it. Would you like one?

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  29. Hi there,
    I just wanted you to know what a blessing it has been to get to know your precious James through your words. Although as a fellow parent I grieve deeply for your loss - sometimes I can hardly breathe, it hurts so badly to read your words - it is a blessing to lift you guys up in prayer, and a privilege to get to know your darling James. What a tremendous boy he must have been! Please know I plead with God often to fill you both with courage and comfort and joy and strength as you continue to live without your precious boy. What a joyous reunion you will have with him someday in heaven - praise God for that.

    In Him Who keeps you,
    Laura Smith

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    1. Thank you for your prayers. He was amazing.

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  30. I grew up with Heather Guild. I have been blessed by your sharing. I currently have a friend facing the likelihood of her child's death. I know you are not her and you each need the freedom to face your lives as is best for you, but I am thankful for how you have helped me know how to be compassionate. You have helped me not be afraid to be involved in the lives of people who hurt. Thank you from Indiana for your help helping my friend in Idaho.

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  32. I've heard people say that "no parents should bury their children". I wouldn't know, I'm still too young. As a daughter, there is nothing more rewarding and beautiful as a smile from my parents. Please allow yourself to smile as much as you can, because your son will hate to see you cry.

    “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.”
    -Helen Keller

    Stay strong.

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