Tuesday, July 16, 2013

Two years

Two years. That's the number. Two trips around the sun. One and a quarter more than James ever made himself. People don't always know. "I didn't know you had kids" they'll say. I don't lead with it. "Hi, my name is Matthew, did you know about my dead son?" Conversation killer. But when they ask, I'll tell them. "Yes, I had a son. He passed away a few years ago." This answer is incomplete. Criminally so, but any explanation is.

I had a son. I had a son born with blonde highlights and dark brown hair. He came in a C-section, sunny side up. He never followed the plan well. There was so much hair the hospital nurses stopped to stare. He was very popular. I had a son I first bathed in a sink in a hospital, my hands trembling for fear he'd break. I had a son with eyes so blue you'd swear you were looking at the sky. I had a son who would not take a bottle, but who would sleep through the night. I had a son who  was a horrible napper. I had a son who was always small, but who made up for it in volume. He didn't cry often, but he yelped as soon as he was able, and often. I think he would have been quite a talker. I think about that all the time.

I had a son who liked to feed himself, though he never mastered the art. I had a son who did not like to stay still; I had a wiggle worm. I had a son who could work his way across a room one inchworm crawl at a time. I had a son who did not like pacifiers unless they came on the heads of animals.

I had a son who got sick. Small things at first. Vomit. A passing stomach bug. A quick trip to the ER. A few hits of zofran to send us on our way. I had a son who got much sicker, encephalitis masking a tumor. A tumor presaging cancer. ATRT, atypical teratoid rhabdoid tumor. I spelled that wrong the first time I wrote here. I'd never heard of it. No one has. One tripped gene in one cell, one in a million. Like wet tissue paper growing faster and faster. Wet and soft means it grows fast, too quick to attain mass and density. Faster than the surgeons could work, and much faster than chemo. Too fast to even try the last.

I had a son who smiled through it all, who fought so hard it made my heart break. Who laughed after surgery and tried to play with his lines. He always smiled, and still rarely cried, though I cannot imagine the kind of pain he must have been in as the tumor grew and snaked down his spine. I had a son who made my heart break with pride. I could not have asked for a better one.

I had a son we buried in a poplar box, special order. Wearing a orange and blue striped polo. With his giraffes, like always.

I had a son I miss everyday. I have a son I will never forget, and who I will always love.

Thank you for your continued thoughts and prayers.

28 comments:

  1. I think of you guys all the time. We walk the halls of children's and I think of you. I found an old business card from spring 2011 with James' newborn photo and stopped in my tracks. Thank you for continuing to write. I pray your heart slowly continues to heal.

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  2. Still think of and pray for your sweet family so often. Praying for you today. My girls and I talk about James everytime we go to the Zoo and see Jamie the giraffe. :)

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  3. I'm a stranger who cares and prays.

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  4. I still think of James quite often- I have everyday for over two years. What a special little boy.

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  5. We've never met, but I think of you all the time and I think about James all the time too. I remember finding ths blog and the photo of him in the jeep looking absolutely gorgeous.

    I cannot believe it's been 2 years.

    James is not forgotten and won't be by the many people whose lives he touched. There are people from all around the world who don't comment but I know they read this blog. Because they've told me.

    One of my colleagues returned to work today for the 1st time since the death of her infant daughter and she like you knows the raw pain and never ending grief of having a child die. She told me she was shocked at some of the well meaning but terrible things people said. It is a very tough journey. And a lonely one.

    It's against the order of things and everyone who clicked onto this blog back when it started cannot fail to be moved by your family's story.

    Your stoicism and strength continues to inspire.

    Take care, and you will always be in our thoughts.

    x

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  6. Always thinking of your family and sending love and prayers....James will never be forgotten or lost as his memory lives on in all of our hearts after hearing your words...

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  7. I think about James a lot. You continue to be in my thoughts and prayers.

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  8. I'm a stranger too that checks here often. I care and pray too.

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  9. I hope that the two of you are doing well. I check here often and y'all continue to be in my prayers. Love you both!!!

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  10. Think about you guys often and continue to pray for you both.

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  11. I just returned from my daughter's Make-A-Wish trip to Paris. I lit a candle in Notre Dame cathedral in honor of a good friend's young on his second birthday, and I thought of Jamsie since they were so close to the same age both in birth and death. There is no possibility that either Jamsie or Mason will be forgotten.

    DeeDee
    www.KidNeedsAKidney.blogspot.com

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  12. I am continuing to pray for you. I wish you peace and healing.

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  13. Although we've never met, thanks to a powerful prayer chain of blogs, I 'met' y'all via the internet...and have continued to pray for your family.
    You do indeed have a son. An adorable, sweet son.
    And he forever will be in your heart.
    I look forward to giving him a hug one day in Heaven.
    God bless you all.
    Donna Mc
    GA

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  14. I'm a stranger as well, my little boy was born several weeks before your sweet James was taken from you. I check here often, I pray for you and your wife often. I can't begin to imagine the pain in your hearts, but I pray for you and I think of your James everytime I look at my son's giraffes which is often.

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  15. I pray that the God of hope fills you with all joy and peace as you trust in Him. What a beautiful little boy he was - it was such a privilege to pray for him. Every time I read your posts I choke on tears; your words make my heart ache. And then I remember that your beautiful boy is laughing and dancing and rejoicing with the King of Kings. No more pain. No more sadness. No more tubes or tests. Only joy, all day, every day, and for eternity. I hope so very much that this gives you some peace.

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  16. A stranger also that checks into this page often!
    You Have a Son! He is still thought of often as you and your wife are too.
    I hope you are healing and find Joy in your memories of James.
    blessings

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  17. I also pray for James may be healed by God and given health.

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  18. I think of y'all all the time and continue to pray.

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  19. HOLA my name is Marianela I'm from Argentina. I've never seen a more beautiful baby in my life before. And I can't believe how strong you really are. I just hope that you find comfort in God and in his promises. The Bible says that soon we`ll meet our loved ones in much better conditions JOHN 5:28,29. Your baby is sound asleep now and he suffers no more. Please stay strong!! Con mucho cariño! Lots of Love...Marianela Castillo

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  20. Two years for me too, thank you for allowing me a glimpse into your pain, you may not know it, but it helps.

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  21. Thinking of you & Kara, and continued prayers!! Thank you for sharing your heart and James with us.

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  22. Still checking in on y'all and hoping all is well!

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  23. ı pray for you.. Thanks a lot for , . .

    I think a . Really i like you . I will follow you .
    Thank you for everything . i . stay strong .

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  24. There are no words, they all fall so tragically short, instead just my heart whispering prayers many times a day and a mind that turns to thoughts of you both & your precious Jamesie just as often. Endless love and upside down hugs from Australia xxx

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