Friday, July 15, 2011

Day Twenty Three





Today James had his birthday party. He is 37 weeks old. As you can see the theme is appropriately giraffe. Jamesie the Giraffe demanded it. The party came together quickly. Long ago, i'd thought as James' birthday would fall on a Saturday, I'd do a tailgate themed party and watch the game. I wanted to show him all the different positions he could play, and encourage his athleticism. He gets that from his mother- I am aggressively uncoordinated. James never suffered from that, even as a two week old baby he rolled over, refusing to sleep on his back. We were so scared of SIDS and him somehow suffocating. That seems so silly now.

We had a cake from society bakery- a vanilla on vanilla cake with his name and a wonderful giraffe on it. Every time before now when I've called there to get a cake I've been told to wait a week. Today I got one the next day- sometimes, things do break James' way. The cake came out better than I expected, and was delicious on top of that.


Giraffe everything. Even a five and a half foot tall giraffe in the corner. His Uncle Tony cooked up squash and asparagus, while his Papa Jim and Uncle Patrick grilled steaks and chicken. Uncle Matt supervised and nursed a beer. James even tried some of his cake, washing it down with some mommy milk. He can barely swallow now, but he managed to get the icing down. Like so many things I once made a priority as a parent, offering vegetables before sweets is simply no longer on my radar.

When the day started, I did not believe we would have a party. James woke us up at 3:00 AM seizing, thrashing in his Moses basket in the slow, rhythmic writhing we've come to associate with his seizures. We waited five minutes as instructed and gave him Ativan. No effect. We waited another five minutes and gave another dose. Nothing. We called the hospice and gave another. The triage nurse returned our call and said the on-call nurse was on the way, and told us to give another dose of Ativan. We did. Nothing changed. The on-call nurse said she was 30 minutes away 30 minutes after we first called.

Panic ensued. We called Kara's Dad, a doctor, and started giving James phenobarbitol, his other seizure medication. He kept seizing, legs bicycling slowly- he barely has the energy to even seize properly anymore. Finally, the hospice nurse arrived. I'll be honest, if I didn't think my son was dying I would have throttled the woman. Used to working with adult patients, she seemed to have no idea what to do with us. Wide-eyed and confused, she kept saying over and over "I'm so sorry your son has a brain tumor." "If there's one thing I do not need from my medical professionals, it's cancer eyes. Especially when they think he's dying. If you can't help, get the hell out of my way. She literally asked "Do you think he's seizing because of the tumor?" Why yes, yes I do. She fumbled with the name of our oncologist. She couldn't get the spelling right to call. She finally managed to get a hold of the on-call oncology doctor. By this time I'd ordered her out of the room and we'd told Kara's Dad to do the actual talking with the doctors.

If she displayed mere incompetence, our third year resident friend actually managed to make things worse. When we told him what we'd given James, he informed us that he would rush James to the PICU immediately because that much ativan and phenobarb would cause respiratory arrest. When informed that James' head was literally swelling because of the tumor, he said "Oh Jesus." So that didn't help much. Convinced we were losing him, we cradled him in our arms while he was still seizing, sang to him, and told him it was ok to go and that we loved him very much. I called my family and told them it was time and to come. I used the word respiratory arrest because it somehow sounded cleaner than dying. By this time, Kara's Dad had our usual pediatrician on the phone and she told us that James was not dying, and we could give him more phenobarb. So we did. It didn't all at once- but James breathed fine. Exhausted, we fell asleep. When we woke up, James was still alive. So were we. Concerned phone calls from our oncologist (who I think have probably given that poor resident quite a tongue-lashing) led to a new plan for James' seizures and pain medication, as it's very possible at this point his movement is a pain response, and as he can no longer cry, something we need to address in a different way. Together, the changes- the medications delivered to our home by our new friends from hospice- appear to have worked. James is at peace once more. The experience shook me. Having an academic understanding of the fact that your son is at home to be at peace is one thing. It is quite another to hold him in your arms and believe he will be leaving you soon.

After napping throughout the day after our adventure overnight, our families reconvened at our house and we hosted James' party. Everything fell into place naturally, with all the people that love him surrounding him. We'd never planned to do this today, we just did it. Kara mentioned it a few hours before it happened, and in those hours we put it all together. We sang him happy birthday- the boy deserves to hear it at least once, and sat around and talked. People took turns laying next to James and holding his hand. I believe that he knows how much we love him, and that he enjoyed his party. Jamesie always liked a good party. The most important thing now is that James know how much we love him. When we first learned of his diagnosis, we committed to being positive about this experience. Although our plans have changed drastically since that day, we remain committed to that. I do not think James is well-served by a gathering of friends and family on death watch, mourning him even while he lays next to them, breathing and looking as beautiful as every. I think celebrating his life, celebrating the joy he brings into our life, is the better choice. And so I choose that.

That's not to say we don't break down- we do, often and about the strangest things. His firetruck in the corner- he used to love to honk the horn, he got a kick out of making it go over and over again. Reminiscing on a walk about when mommy was pregnant with him and could barely make it around the block last summer. A thousand small things, as our very identity is tied up in him. But we can't help him by doing that. We can only love him. And so we do.

I continue to be overwhelmed by the outpouring of support and love for James. Hearing about how his story has impacted people positively warms my heart. Please continue to pray for James, that he continue to be comfortable and at peace.

51 comments:

  1. A correction- Kara reminded me that she, not me came up with the tailgate idea. As usual, she is right.

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  2. what a wonderful party - i am sure that james loved it! continuing to pray for you all ...

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  3. praying for peace and comfort. Happy Birthday James!!

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  4. Thank you so much for your openness and honesty in sharing this heart-wrenching time. I know God is at work and is using Jamesie's story even now.

    We are praying for y'all and especially for your sweet son. Hoping you all feel His peace and comfort right now. Wish there was anything we could say or do to make this easier for y'all, even several states away. Sending you love and prayers from SC.

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  5. Dear Lord,
    Please let baby James and his Mommy and Daddy sleep peacefully tonight. Bring them sweet dreams and comfort,
    Amen.

    Praying for all of you since day one; my heart and prayers are with you.

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  6. Praying for you and your beautiful baby boy.

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  7. Happy Birthday Sweet James. I hope tonight is a peaceful night for both you and your family.

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  8. Hi, I found your blog through mutual friends of ours and have spent the last couple of hours reading about your journey. Praying for you and your sweet, sweet beautiful son. May God be with you. ~ Shivonne

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  9. Happy birthday James! 37 weeks - such a beautiful boy! I know mommy and daddy are very proud of you. I'm so glad that they are sharing you here. I've been praying for all of you :)

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  10. Beautiful party. Happy birthday to James! Praying for a peaceful, uneventful night for all of you tonight.

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  11. What a lovely thing to do and I'm so glad he got to hear Happy Birthday.

    Both the nurse that came last night and the young resident will never forget that experience. The 'life lesson' they learnt last night will hopefully stay with them for a long time and make them better people as a result.

    I lost a baby at 18 weeks in an ER. When I asked the young Dr to hold my baby after I had delivered him, he said, 'what you want to hold it'. I just said to him, 'that's my baby'. The look of sheer horror on his face when he realised the magnitude of his gaffe. I am convinced he would never make that mistake again.

    God Bless you all, as lucky as you are to have that little boy he is SO lucky to have you both as well.

    Bec xxx

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  12. I saw a toy giraffe today and immediately God brought baby James to my heart and mind as. I just discovered your story yesterday through mutual friends. I think it is neat that at the moment God reminded me to pray for sweet james all because of that toy giraffe, it could have possibly been the same time you were planning and having a giraffe birthday celebration. I am so sad that as hard as I prayed last night, as did everyone, sweet jamesie still had such a terrible night. dear Jesus, pllease bring this family overwhelming peace and rest in you tonight, hold them all in your arms. Thank you james for showing me how much more I should treasure what really matters in my one and only child, a boy too, rather than get frustrated with toddler tantrums or potty training and the like. I am so thankful for those things now and hope that I see giraffes often and that they will always remind me of you.

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  13. Big prayers, and remember to let your little light shine in the BIG ways that he will. ♥ Happy Birthday, Jamesie!!!

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  14. What an amazing gift you gave James today. Thank you for sharing your story and reminding me of what's important in life. Your family is in my prayers.

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  15. I am praying right now. Praying and praying.

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  16. Lifting sweet James up in prayer, praying for peace and comfort.

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  17. Praying now for you and your beautiful, sweet baby James. May God hold you close and in his comfort and peace tonight and always.

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  18. I have thought about you all non-stop since this blog was brought to my attention. James is an incredibly beautiful baby and he couldn't be more blessed than to have parents like you. It's hard to know what to say in situations like this but I just want to say that my thoughts and prayers are with you all. You have shown the utmost grace in the midst of such an unexpected, trying time. You have a piece of my heart, for whatever it's worth.

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  19. I will never look at giraffes again without thinking of James. I have been thinking of him all day. You are in my thoughts. {{{HUGS}}} to all of you.

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  20. Saw your story on Hopsy's blog, and have spent the last couple of hours reading about your beautiful family, and sweet, sweet baby James. I will never meet you, but you have my most heartfelt prayers (and tears), and most importantly, you have God's grace. In the span of one night spent reading about your amazing, courageous son, he has inspired me beyond words. As have you. My heart and my prayers are with your family, tonight + from here forward.

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  21. I have just read your whole blog today, and I hope that you enjoy every minute you have left with James. I am in my first year as an intern doctor in Australia. Our system here is different, we do a general first year in adult medicine in our first year, a mixture of medical, surgical & emergency terms. I have wanted to do paeds since before I started my course, and your blog has re-instilled this in me, as I am struggling through a hard term currently.
    Thinking of you all x

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  22. You don't know me, but a mutual Baylor friend posts your blog link often on Facebook. Sweet James's story has many, many brothers and sisters in Christ praying for your family. Many prayers for the peace, comfort, and healing that only God can provide. Eternal Father, I pray for the Sikes family. Send Your Comforter to James, Matthew, and Kara and their families. May their hearts, minds, and bodies find rest in You. Give sweet James peace. Hold Matthew and Kara in Your hand. May the love they know in You provide refuge when the trials and tribulations seem overwhelming. In your Son's precious and holy name I pray.

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  23. I have been telling everyone I come in contact with about James. I showed the lady at the hair salon his picture today. I don't even know him and yet I love him and both of you. I hate that God is allowing this to happen but also believe that He is a good God. Know that James is making such a difference in people's lives and that the Gospel is being shared because of him and because of your faith.

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  24. this isn't spam, I just can't think of anything else adequate to express the gratitude I have to you and james for being the way in which god has been working in my life lately http://glenphillips.bandcamp.com/track/darkest-hour

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  25. You are all so strong and an absolute inspiration, the birthday party looked amazing and i'm sure James feels all the love from both you, and also everyone that has read this blog who has teared up and smiled at all the pictures of him. I'll think of all of you and hope and pray for you and your precious angel, James.

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  26. Your sweet little James & your family are in my prayers

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  27. I would have wanted to throttle the nurse, too. And the resident. Praying for you all after finding your blog late last night and staying up too late reading all about sweet James.

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  28. I woke up at 3 am that night with the strong urge to pray for you. I had read some of your blog the night before because I saw it posted on a friend's blog. At 3:00 am, I felt like I was supposed to pray, and I did until 7, and then intermittently throughout the day.

    I just wanted you to know that God loves you all so very much and he is initiating with people who don't know you to intercede on your behalf.

    Also, I had a ton of giraffes for my daughter. I also had a giraffe themed party. Now they also remind me of sweet James. thanks for that.

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  29. Happy Birthday James. May God hold you in the palm of his hand.

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  30. Dear Kara,

    I don't know if you would at all remember me, but I traveled with you to London for Baylor in Great Britain in 2004. Over the years, you have remained in my mind because you were a kind, sweet, and lovely person. You had no idea who I was, but you still took the time to get to know me. You had such a beautiful energy, and I could tell that people just loved to be around you.

    Then and now, I am so impressed by your strength and positive attitude. Thank you to you and Matt for sharing your story. I will be lifting you, your family, and sweet baby James up in my prayers continually. Happy birthday, James!

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  31. I've not stopped thinking of your family and praying the most sincere, and heartfelt prayers for peace and comfort for this beautiful child and his amazing parents since first reading your blog a few days ago. Although I have never met you all, I can not begin to tell you how much of an effect this precious boy and his wonderful parents have had on my heart and in my life. You and Kara are truly amazing, amazing people and your enormus, unconditional love for your son and unwaivering faith is such an inspiration. It is genuinely a honor to have the opportunity to pray for you and your beautiful, perfect angel James.

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  32. i laid in bed last night and just wept. i asked the lord to please bless your james and entire family. i cannot imagine what it feels like to be in your shoes, but you have shown such grace throughout all of this and i hope the lord wraps his love and arms around you and gives you all the peace.

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  33. Happy Birthday sweet James! Praying for you and your family during these days.

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  34. James is special. His story is going to change people's lives. What an amazing gift to the world. God please give him peace, he has served you well.
    Matt and Kara, you are not alone in your agony. I pray you find some comfort in the love sent to you from all around the world. Your son's life is precious and meaningful xx
    Alana - Australia

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  35. Wishing you nothing but peace, comfort and love.

    I found this blog, like many others, through a friend. I've been reading and yes, weeping, for the past several days. I am amazed at the strength James possesses, as well as the strength you two have for sharing your heartbreaking, and yet heartwarming tale.

    I'm glad you have.

    Your story touches me deeply, and as the father of two lovely kiddos, it makes me even more keenly appreciate that which I've been given. The love you've shared, the strength with which you've endured and used to share this story will stay with me. It will help me to be a better daddy. I can't tell you how much that means.

    This same dedication and love you shower upon James will serve to ensure that while there are trials, there is love and joy and hope. What you are doing here, in this blog, guarantees that these times of terrible sorrow will be the least remembered of the life of one very special boy.

    Thank you. And thank Jamesie!

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  36. Happy Birthday Jamesie... You are a beautiful Soul!

    Anne Dillon
    Mayde Creek Elem

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  37. You are amazing parents and your son is blessed by having you.

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  38. Happy Birthday Jamesie! You are a gift to us all. You and your family have remained in my thoughts and prayers and will continue to do so. I say a prayer everytime I think of you. You are exceptional parents, the definition of what true love is for your child.

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  39. Happy birthday sweet Jamesie! What a great party to celebrate his life.

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  40. I hold you all in my heart and hope these days with your beautiful son create memories you will always cherish. Sending you much love.

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  41. Happy birthday, sweet Jamesie. What a delicious looking cake, and I fully agree. Dessert before dinner should be done more often! What a great idea to celebrate his life rather than mourn a death watch. Like my mom, who had end stage lung cancer said, "I don't want to waste a single minute dying. I want to live to the very last second." And she did.
    May Jamesie LiveStrong each and every minute. May God bless you and your sweet, precious family.

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  42. Kara and Matthew, we are thinking of you today as you cherish your beautiful James. Kara, I believe you were one of my husband's students at Baylor (Scott Garner). We will continue to pray for peace and comfort for all of you.

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  43. Happy Birthday Jamesie! Praying for your loving family. May the Lord bring Jamesie and y'all peace.

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  44. Happy birthday James from your friends Ginger and Bobby! We are all praying for you and are so glad you're making the most of this time.

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  45. Sending lots of love and prayers your way.

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  46. What a precious little angel you have! You don't know me, but I have been reading your blog and constantly have your family on my mind. I have been mulling over what to say to you and no words are adequate, only tears and prayers. Even my prayers seem to have simplified to 3 words: Lord Jesus have mercy! I cannot fathom the journey your hearts are on, but I wanted to express how deeply I am grieved over this for you 3. He is holding you, even when there is no strength to hold onto him.

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  47. Thank you for sharing this journey. We are continuing to pray for sweet James.

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  49. Just bless you all...prayers from Texas...

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  50. Your story came to us for prayer from my stepmother, your aunt Millie. We've been praying for you in Waco. May God's peace and rest be on you all.
    Jo Fowlkes

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