Tuesday, July 19, 2011

Day Twenty Seven

When I picked out a picture to pair with this post tonight, it occurred to me that eventually I will run out of pictures. Eventually I will have seen every picture of James, have used every image in one way or another. Because James is gone, a finite number of pictures exists. The supply is limited, and it cannot be replenished. I wonder what happens when we run out. I wonder what he would have looked like in a month. The shock of dark brown hair he was born with was slowly being replaced with new, blond hair, a concession to me as in every other way he was identical to his mother. His mother's nose, his mother's lips, and cheeks. Even his eyes were closer to her shade of blue than mine. He had my short, stubby legs though. Poor boy. I was always pleased he looked like Kara. The hope was he inherited her personality as well.

We took different paths today. I went passive and Kara went aggressive. I went asleep last night and slept for nearly eleven hours, and did not want to wake up. Kara slept not at all and attacked the day early and often, calling and setting up James' fund, attending to flowers (we're only doing flowers for the casket spray- no others), and dropping off James' clothes at the funeral home. We decided to bury him in a polo shirt, shorts, and puppy shoes. We didn't want somber clothes. James was never somber. Kara bought the polo last summer, when she was pregnant with James. It matches one of mine she also bought. We matched a lot- even on one of his last days, he wore a seersucker set of overalls that matched my seersucker shorts. We'll send him on his way with a few giraffes as well.

We met with the minister and finalized plans for the service. We're hoping it will be upbeat, a tribute to a boy who hated naps and loved people. Kara will wear a giraffe print dress, while I will wear a jungle themed tie with giraffes and an orange shirt. Although we mourn James, we feel overwhelmingly that his life was joyful in every way, and should be celebrated as such. To mourn seems inappropriate. Even with three IV and a brain tumor, James wasn't big on mourning. Too boring.

To prove humor still exists, Ferragamo actually makes a giraffe print tie. I called or had someone call everywhere in Texas that would have this tie. I could not find it. The closest thing was a jungle print tie that includes giraffes at Neiman's. The tie was $170. This will instantly make it the nicest tie I own. I've bought whole suits for less than that. Without thinking, we also bought an orange shirt there. We just picked a random one. It looked nice, but you know, a shirt is a shirt. When we checked out, we got a little sticker shock. The shirt was $500. Brioni. Chastened, we purchased a similar, cheaper Ralph Lauren shirt at Dillard's and returned the Brioni shirt. Which just goes to show you that my father and I really have no business shopping off the rack at Neiman's. We laughed.

Often, Kara and I pass each other in our grief process. She'll be mad when I'm barely speaking, and vice versa. The process lacks any kind of structure. It's more a free form disaster. The stages feel more like moods. That is not to say we do not believe James is healed- that he beat the tumor. We do. But we miss his presence, just his being there. We miss his smile and his silliness- how much he loved to fly, he was a bit of a thrill seeker. Throw him up in the air and he'd cackle all the way down. He got that from me. I always expected one day I'd try to take him skydiving and Kara would arrange to have the plane destroyed the night before. We miss the future we never knew.

Very early tomorrow, we will bury James with our family, in a place I'd never been before Sunday and where Kara hadn't been in years. We will put him to rest and say goodbye. That afternoon, we celebrate his life. After that, I have nothing more to "do." We'll see what happens then.

Your continued support and prayers are deeply gratifying. If you can, please consider making a donation to James' fund. We certainly are. I think we'd rather do that than buy a few Brioni shirts. Rhabdoid tumors are a relatively new type of tumor- until recently they were misdiagnosed as another type of brain tumor, and Doctors were simply confused why some patients diagnosed with the other type of tumor did so poorly in comparison to others. In the words of our oncologist, they are "orphans" when it comes to research funding. Gains are being made. We hope to contribute to that.

38 comments:

  1. Your story deeply touches my heart. I was one of your first followers, as I've been looking for your updates each day since he initially went to the hospital. James is one special boy. I say that in present tense because his spirit will forever live on, as he has touched so many lives. From the first blog post, I have continued to pray for James and for both of you. I pray that God continues to give you peace in knowing that Jamesie is now as perfect as can be and that he's in Heaven waiting for his Mommy & Daddy to join him again one day.

    Know that you have been an inspiration to me.

    ReplyDelete
  2. God bless you. I will pray for you tomorrow as you say good bye to sweet James. I look at pictures of him and as I have said before, he is so delicious. But more that that he is joy. He radiates it. He lives it. He gives it. I pray you joyfully celebrate your delicious James and that as each day passes you yourself going closer to him rather than farther away. I am so deeply sorry for this unfair, agonizingly painful loss. I am so berry sorry.

    ReplyDelete
  3. Thinking of you and Kara. Praying for you and your family. I wish I had the words to help ease the pain. You write so beautifully. I imagine a wonderful book about this daring little boy who gallops in to save the day on a giraffe. Not only does he save the day, but he changes the world. Your little boy is doing just that, one person at a time. *Hugs*

    ReplyDelete
  4. I am so so sorry. I first learned of your sweet family on Thursday and have been following diligently ever since. You have been on my heart, in my mind and in my prayers since then. Because of the amazing love you have shown your son, I want to be a better and more loving parent to my 2 kids. God bless you, especially tomorrow. Thank you for sharing your story and for the impact your family, especially James, has made in my life.

    ReplyDelete
  5. Even thought we have never met I feel your family has touched my life forever. I will never take one moment for granted. I want to wrap you all up in a hug because there are just no words to convey my feelings. Please know that there are people you have never met, will never meet, who have been touched and changed forever by your story.
    Love, hugs, and prayers continue.

    ReplyDelete
  6. I will pray for you and Kara tomorrow as I know it will likely mark the second hardest day of your lives. I will pray for all the family and friends that gather to celebrate James. I think it is wonderful that James will be celebrated and not mourned. I will pray for the time that comes next. I can feel your anxiety over the calm and quiet that will come after tomorrow..after the busy preparations for the service. That time will be hard but I hope that in your darkest times, God, your family and friends will comfort you and lift you up.

    ReplyDelete
  7. I'm inspired by your perspective and ability to still find humor, even in your pain. Still praying for you both and will be praying for you tomorrow as you say goodbye. "The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." Lam 3:22-23 I pray for new mercies for you, especially tomorrow morning.

    ReplyDelete
  8. I am another one of your many followers who you do not know. My mother works with Kara's mom, and I have been following your blog since the beginning. I don't think I have ever prayed as frequently or as emphatically as I have the last 27 days. I don't think I have wanted anything in my entire life as much as I wanted sweet James to live and be completely healed. I found myself begging God everyday for a miracle. It's so strange, considering I don't know you. But like so many others, James has so completely touched my heart.

    Thank you, thank you for sharing your journey every day. Your writing is beautiful and therapeutic to so many of us. As long as you keep writing, we will keep reading and praying.

    ReplyDelete
  9. I have been reading this blog and praying for you since Amy Bastian's mother asked me to last week. I thank God for your gift of faith and pray for peace that I can not understand as I hug my sons a little harder today. You will be in my prayers throughout my time here on earth. Comments are difficult to write.....I just cry and pray with you. But, I see that you read comments and are encouraged.

    ReplyDelete
  10. I love that you continue to share pictures of James with us. Many of us never had the opportunity to meet James, so I feel like I'm getting a glimpse of his personality by seeing his beautiful pictures. I am continually amazed by your strength and faith during this tragic time. I love the fact that you are starting James' Fund. Again, it is an example of your true character and the impact that James is going to continue to have in this world. Please know that I have not stopped praying for your family since I started reading your story and I will be praying for you tomorrow as you say goodbye to James. But please know that my prayers for your family will not stop tomorrow. Your story and your family have touched my life forever, so you will always be in my prayers. I will continue to follow your blog for as long as you continue to write. Thank you for sharing with us.

    ReplyDelete
  11. I will be thinking of you all, tomorrow (well today since it's after midnight.) I can't imagine going through what you have to. I still hurt for you. {{{HUGS}}}

    ReplyDelete
  12. Matthew and Kara, a friend posted a link to your blog on Saturday, and my heart has been breaking for you ever since. I sat and sobbed as I read your story from the beginning. I cannot imagine the pain you are experiencing, but I pray that somehow God's peace will cover you and your families in this time of grief. Through your words and your story, I feel like I know you, though we've never met, and you will continue to be in my prayers. Know that James has forever changed me and my family and his legacy will live on through these transformations.

    ReplyDelete
  13. Please know your family is in my prayers. I'm so inspired by you both.

    ReplyDelete
  14. Keeping you in my thoughts and prayers as you walk through this unimaginable day. No one can be prepared to handle this and I guess auto-pilot serves a function. Will especially be thinking of all of you in the days ahead. I think James is healed and healthy but his happiness was certainly found in the arms of his Mommy and Daddy. I guess that is happiness as we know it and he is uncovering new kinds of ways to spend time until he is with you again. Bless you both and God Bless James.

    ReplyDelete
  15. Kara and Matthew, me and my family will be wearing giraffes today as well, in honor of the legacy that James has left behind. Your family will be in the forefront of my thoughts and we are praying hard for you.

    My community page will be doing a charity auction on James behalf and all of the community is looking forward to making this contribution to the James Camden Sikes fund. We share the hope with you, that some day in the future rhabdoid tumors will be annihilated with treatment and never rob these little ones of a bright and lasting future. Maybe James is leading the way.

    Love, warmth, support, and endless gratitude to you for sharing your James with us. He inspires my heart.

    D. Antonia

    ReplyDelete
  16. My thoughts and prayers are with you, especially today. Since I first heard about your story - James has been in my thoughts numerous times a day. I am so sorry for your loss and yet, inspired and thankful by the celebration and love that James was on this earth and touched so many lives. What a special boy. Much love to you.

    ReplyDelete
  17. Kara and Matthew - Continue to pray for you two. After reading how many lives you affected, I hope too that this will strengthen your walk with God and your relationship with one another. Praying for good communication, strength and patience as well as wisdom during this time. Looking forward to celebrating your sweet son today.

    ReplyDelete
  18. God Bless you and your families in this very dark and difficult time. I am so, so sorry for your loss.

    ReplyDelete
  19. Saying another prayer for your family today.

    ReplyDelete
  20. Saying extra prayers for your family today as you celebrate Jamsie's life.

    ReplyDelete
  21. I came across your blog last week. I have a son close to James' age, and reading your blog has reminded me of the gift that each day with my son truly is. I have been praying for James and your family every night while I nurse my son before bed and also thanking God for the blessing of each day that I get to spend with him. I have also made a donation in memory of James. My sincerest hope is that the comments, prayers and donations by the followers of your blog will bring your family some peace and give another family more time with their own sweet child.

    ReplyDelete
  22. Thinking about you and your family. James is smiling down on you and Kara today as you celebrate his life. Prayers lifting you all up today and forever.

    ReplyDelete
  23. Please know even though I am hundreds of miles away , and even though I don't know you guys... You are all in my prayers today. May God bless you with peace, rest & grace in the days to come.

    ReplyDelete
  24. holding your family in my thoughts and prayers...

    ReplyDelete
  25. Prayers headed your way as you say not goodbye but until we meet again to your precious boy. I just finished reading Mary Beth Chapmans book, Choosing to SEE, and was deeply moved by it. You may find comfort in it in later days. She is so open and honest about her grief. Again, praying for you today and in the days, weeks and months ahead.

    ReplyDelete
  26. Praying for you both, and will certainly make a contribution. I am so very sorry for your loss.

    Cxx

    ReplyDelete
  27. thinking of you every day. thoughts and prayers today as you celebrate jamesies life <3

    ReplyDelete
  28. I continue to pray for you. So sorry for your loss, for what I'm sure would feel like an extended limb that is suddenly gone. It is hard to believe. I have printed out a picture of James to keep in my bedroom. I chose one of the earlier ones with his hair that is all tasseld. It is the first picture I saw of James and the one that drew me in. He drew me in with that hair, bold blue eyes and impish grin. I will contribute to James' fund, but I wish that there is something I could do to help ease your pain. Godspeed.

    ReplyDelete
  29. Matthew and Kara, I can't help but be amazed at the droves of thousands of people who cannot get their mind off of your family and are truly prayer for you all hours of the day and night. I can only imagine the darkness of this grief for you and how empty you feel. Every time I think of you guys lately I pray that the "joy will come in the morning". I can't help but think how much the Lord truly loves you and kara and how He has rallied so many to pray for you that you will be able to make it through this terrible time. I am praying that God will give you the wisdom you need at all the right times and the comfort you need as you move forward into that unknown.

    ReplyDelete
  30. Like everyone else who has commented, I am also praying for you both today as you celebrate James' life. It is so amazing how a family I've never met has changed me and the way I look at my own kids. I was thinking this morning about how I would feel if I were in your place. I can't imagine how I would say goodbye to my child, so I would say goodnight. Goodbye means I may never see her again, but goodnight means that I'm only away from her for a little while until the morning comes. There will be a morning, when you are reunited with your sweet son, either in the clouds when Jesus comes or in Heaven, but the morning will come, and you will see him again.

    Thank you for your honesty, and believe me, you are a brave couple, even if you don't believe it. I pray that God will hold you both so close to Him and to each other, that as you both grieve, you will not let your grief separate you, but that you will lean on each other and grow closer as a couple and closer in your walk with God.

    I will also make a donation in James' honor. I was reminded this morning of how many wonderful organizations were started by families who lost loved ones (M.A.D.D., Susan G. Komen, etc). Given the lack of research on rhabdoid tumors, you all have an incredible opportunity to put this cancer at the forefront, to raise awareness and to help other families who will face the same thing. What a beautiful and powerful testimony to James it would be to help another child live. I know it will never bring James back to you, but what a great opportunity to share his love and his legacy with others.

    I pray God's continued mercies and grace to abide with you and your families. Please continue to write, you and James are inspirations to all of us.

    ReplyDelete
  31. I just heard this song while I was out at lunch and thought of you all. Hopefully in time you will find peace and see God's mercies at work even in the midst of this trial.

    "Sunrise" by Nichole Nordeman

    If I had the chance
    To go back again
    Take a different road, bear a lighter load
    Tell an easy story
    I would walk away
    With my yesterdays
    And I would not trade what is broken for beauty only

    Every valley
    Every bitter chill
    Made me ready to climb back up the hill
    And find that . . .

    You are sunrise
    You are blue skies
    How would I know the morning
    If I knew not midnight?
    You're my horizon
    You're the light of a new dawn
    So thank You, thank You
    That after the long night, You are sunrise

    There's a moment when
    Faith caves in
    There's a time when every soul is certain God is gone
    But every shadow is evidence of sun
    And every tomorrow holds out hope for us
    For every one of us

    You are sunrise
    You are blue skies
    How would I know the morning
    If I knew not midnight?
    You're my horizon
    You're the light of a new dawn
    So thank You, thank You
    That after the long night, You are sunrise

    You alone will shine
    You alone can resurrect this heart of mine

    You are sunrise
    You are blue skies
    How would I know the morning
    If I knew not midnight?
    You're my horizon
    You're the light of a new dawn
    So thank You, thank You
    That after the long night, You are sunrise

    ReplyDelete
  32. The service this afternoon was beautiful, and your words about James were very meaningful.

    ReplyDelete
  33. Your sweet James has changed the way I look at my children and life, in general. What an amazing couple you are and my prayers and thoughts are with you.

    ReplyDelete
  34. Thoughts and prayers with your entire family tomorrow as you allow your angel to fly away to his "other" Father. Much love being sent your way. ♥

    ReplyDelete
  35. I read your blog this past weekend and can't help but check for updates. I had a very heavy heart all day at work and realized on my way home what today was for your family. I can understand how you felt on the first day going from your pediatrician's office to sitting in the oncology's office waiting for results. I had a day very similar but very different from yours. You always look back to see how you got there but never find the right answers. I went through this with my son around a year old and will never forget how I felt when the possibly of a tumor on his heart was there. We were fortunate to find it was not a tumor nor cancerous but faced many surgeries in the future. I read your post and wondered why my son was saved and yours wasn't. It doesn't make sense and I'm so sorry. I can only imagine the anger and sadness dwelling inside of you. I pray that God has a plan within all this and shows you the way through your hard times. Remember James will never be forgotten. His legacy will be carried on all around you!

    ReplyDelete
  36. My heart hurts for you. I do not know you in person, we have never hugged or smiled in passing even. We live in different places in this country. But I hurt for you. I am a mother and I grieve for your loss. There is nothing to say that is comforting, I will not even try. I wish you both some sense of peace in all of this. I hope you continue to blog about James and your hearts. I was touched by the Layla Grace Foundation and have been trying to spread the word about it. I will do so for James. I will donate too. Perhaps you could start some sort of facebook page for his donation cause and I can post the link. So in this time when words simply can not help, please know that I am deeply sorry....

    ReplyDelete
  37. Although we don't know one another, my heart breaks for you. I am praying for you nearly all the time .... that God will wrap His arms around you and carry you when you feel your strength is gone. May HIS peace that passes all understanding, guard your heart and your mind. Your son was so privelaged to have you as his parents.

    ReplyDelete
  38. I am so thankful you two were James's parents - he was just as blessed to have you as you were him. In his short life, he knew great love and that was a gift.

    As a pediatric nurse, I see a lot of grief, but your story has touched me deeply. Clearly, James is a special guy. One of my nurse mentors told me once that grief is like standing with your back to the ocean - you never really know when the waves are coming, and which ones are going to take you down. I pray that as you walk through this grief with one another you will trust that God will not let you drown.

    I can't imagine how you must hurt. Thank you for allowing us to go to with you on this journey. Peace.

    ReplyDelete