Thursday, July 14, 2011

Home at Last

Home.

I don't think I have ever been so glad to be home, but at the same time, so incredibly sad. We got home last night around 7:00. One of my sweet friends picked up the dogs so that the house would be quiet. (You know you have amazing friends when one of them drops everything, picks up your 2 dogs to add to her one, has the most adorable 1-year old baby, and brings you dinner. Seriously, amazing.)

On the way home from the hospital, Matthew and I realized that it will be our last car ride with James. He had to come home in the Moses basket due to the way his car seat would put pressure on his neck/brain. In what world do I let my son ride in car without a car seat? I think Matthew actually drove slower home from Children's than he did the day we came home from Baylor with James. I said that we were driving home precious cargo- just like we were 8 months ago. I can't tell you how many times I have said that phrase now. Too many to count. Because we truly are carrying with us precious cargo.

We sang songs to him the whole way. I am so sure that he would have rather had silence or the radio because I'm pretty sure we sound like dying cows when we sing! Poor baby. But nonetheless, James didn't fuss a single bit. We took extra time to drive around the neighborhood a few times, reminiscing about walks we had been on and what we had seen on some of the streets.

When we arrived home, we had dinner waiting from sweet Toya and Terry, and Sprinkles cupcakes from Uncle Patrick and Aunt Vanessa that said "Sweet Baby James". It's funny what things you think about first when you realize the milestones you are going to miss. I realized sometime yesterday that we will never have a birthday party for James. Just a few weeks ago I was pinning on pinterest my inspiration for his first birthday party. Giraffes of course. My, how life changes in an instant. And so my Mother in law ordered James a Giraffe cake and we will celebrate James tomorrow instead.

And so James had a great night. The hospice nurse met us and went over all the pertinent details of James' care with us. He has a port that was put in while we were in the hospital- 2 weeks ago? I can't even remember at this point. All of his medicines will be given through his port and we have a portable pump that is constantly giving him TPN (nutrition). James nursed one time yesterday before we left the hospital. James had not nursed since Saturday. I think he must have had a seizure or something else, because as of Sunday he has acted like he didn't know how to nurse. I had been sobbing yesterday morning, thinking that he had given it up for good. Maybe James did it one last time for me. Or maybe he will surprise me and do it again! But either way I cherish the time yesterday to nurse him. Some of you may not understand that bond that is created when you breastfeed your baby. But can I please tell you that for me, it was the most special experience. (I know for various reasons people cannot breastfeed or choose not to. It's a personal decision and you have no judgment here. For me, it was a wonderful experience and I would encourage you if you are on the fence to try it.)

So James came home with 6 medications to be given in various intervals and that can/cannot be given together. I've learned about flushing the tube in order to make sure that no interactions exist. I learned how to give doses over a slow push. I know how many pushes of ativan to give him in case he has a seizure over what intervals of time.

James did have another seizure this afternoon. His seizures look different than a typical epileptic seizure that most people think of, so they are hard to classify. I was so scared. As the tumor grows, the possibility of more seizures increases. The sodium balance should keep most of them away, but it is a most likely fact that he will continue to have them.

We spent the day with family and friends. Most of the time James preferred to be lying on his side on the floor, so we laid on the floor next to him. We read books, sang songs, and even played with one of his balls. Matthew and I took him on a walk tonight (once it finally cooled down to like 90 degrees). James seemed to enjoy it, and we absolutely loved being able to do something normal with our sweet boy.

We are at peace with our decision to bring him home. When we talked to the doctors some more yesterday, they said the chemo would have only granted us 3-4 weeks more with James and he would have been in constant pain due to the drugs administered. It truly would have been selfish of us to ask him to do that for us. So we chose quality over quantity time.

Today has been a great day with James. That doesn't mean we don't cry- we definitely have our fair share of crying. We weep. We grieve the things that will never be. But we enjoy the time we have with our precious baby.

I think when you become a parent, you hope for two things for your children. The first is that your children know that they are loved. And James is so desperately loved. Not just by his family, but by so many people around the world. Our other hope is that James would find his calling in the world and live it out. My word, has he found his calling. James' impact on the world is far greater than mine.

So, what else can I ask for? I spent the day with the light of my life, and God gave me one more day with him. Glory to God, who blesses me beyond belief.

Thank you all for your heartfelt comments, emails, and texts. We are so grateful for your love of sweet James.

25 comments:

  1. My heart is absolutely breaking for your family. Praying for guidance, peace, comfort and a miracle. Bless your sweet boy.

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  2. I am so sorry for what you are going through, I cannot even begin ti imagine the pain. My thoughts and prayers are with all of you.

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  3. James truly has inspired more people than you will ever know. People he knew well, people he met once, people you have never even met. He is full of God's strength and courage and will always represent love and innocence to all of us. No words can take away the pain you are going through, but please know we love you and are praying for Christ's will to be done and for His comfort to be with you.

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  4. I was forwarded your information from a dear friend of mine and just read your blog. I'm praying for peace and comfort for sweet James.

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  5. Praying for peace for you and your sweet James. Thank you for sharing your heartache with us so we can appreciate all the blessings we have in this life and cherish our time with loved ones.

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  6. Praise God you are home with your precious baby! I just found your blog tonight and we are praying for baby James.

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  7. I saw your story because a friend posted it on FB, I just want you to know that I am praying for you and little James. I beleive that Jehovah Rapha (Ex 15:26)is the Lord your healer, he is able to cure cancer, and that he cares for you. I speak total and complete healing and restoration to James Camden, the name of Jesus Christ. I pray peace beyond understanding for you, his parents. In Jesus name, Amen!

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  8. Can't stop thinking about and praying for your beautiful family. Sharing your blog with friends and am sure that heaven is flooded with prayers for your precious son and courageous family. You have touched me.

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  9. We've never met, but your strength is an inspiration to me. I learned of your story yesterday and of your blog today. I've spent the last 30 hours praying for the two of you and your beautiful baby James as frequently as I am able. I sat in my office today and wept as I read your story. My first son was born two months before little Jamesie, your words have helped me to not take a single minute with him for granted. Thank you for sharing your journey with all of us. I'm still praying for your miracle.

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  10. Praying and lifting James up to our Healer tonight. Lifting you and your husband up to our Comforter tonight.

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  11. Thank you for the update. So good to hear that you had a peaceful and love filled day with James and your family.

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  12. I have thought about sweet James this entire day. My heart is broken. James has taught me to cherish every single moment with my four kids. I am hugging them tighter because of him. James, you are the most precious gift! I continue to pray for comfort and peace for all of you.

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  13. You have barely left my mind in the last day and a half, since I really read your story. I have hugged my kids more and have stuck as much fun into our day as I could. I am greatly humbled by your reminder that there is much to be thankful for, even in the darkest of times. Imagining how much you must be savoring your son right now makes me savor my kids more. Knowing that such wonderful parents are out there makes me want to be a better parent. Seeing so much faith and love in a place that leaves so much room for despair does unspeakable good. Truly, Love conquers all.

    Thank you so much for your courage in sharing with such as large audience. I pray you are blessed by it even as you are blessing others. I also pray that you would know and feel your Father loves you even more than you can love your sweet baby James. Your lives are beautiful and your little boy is as close to perfect as humans get. May many blessings be added to you!

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  14. Kara, I want to let you know how much I admire your courage and love for James. Motherhood hasn't come as naturally for me as it seems to for you. Over the last few weeks I have wept alongside you for sweet James while also being convicted of my shortcomings as a mom. Thank you for showing me what true selflessness looks like.

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  15. I don't know you but sweet james has touched me as he has so many others. I have one boy and so this especially breaks my heart. I have no great or fancy words to pray for you, but I know God can translate my heartache and sobs for your family. All I know is to pray that God will just 'be big' in showing himself through James, whether that be a miracle in saving his life or for the tremendous impact your boy has already had on people's faith and priorities when he goes to meet Jesus. He must be the most loved boy in this state, or this world right now.

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  16. I have been thinking about your little baby non stop since I found your blog yesterday. Your love for and concern for him and each other leaps out from your blog and from the beautiful photos of him. I sit here with tears rolling down my face. Your story has touched me and many many others, and I wish you all peace and strength.

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  17. The past week I have not been able to get your family and sweet baby James off my mind or heart. My heart breaks for you. I continue to pray for peace and strength for you all.

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  18. I'm not quite sure how I found your blog but my heart and my most fervent prayers have been with your family. Please know that up here in Northern Alabama are hearts are with you.

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  19. Happy James Day. What a great idea to celebrate today with his giraffe cake. I hope the despite the pain your family is experiancing, today is day with many joy-filled moments as you celebrate James with cake, family and celebration!

    I continue to pray constantly and weep for your family, as do many others.

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  20. Thinking of and praying for you and your beautiful baby boy...

    I read your post yesterday about how James was named...and my family is also from Norfolk, Va...we all still live in Va Beach and are praying desparately for a miracle...little james has touched our hearts and made me so very thankful for all life has blessed me with...wishing you strength and sending love in the days ahead

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  21. As a mama who breastfed all 3 of her kids, I let out an "Amen!" when i read that he nursed. That bond is just something that cannot be described. Continued prayers for your family & your sweet baby boy.

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  23. i cannot stop thinking about you & sweet, sweet jamesie; constantly checking for updates and each time unable to fathom the courage it takes to share your story w/complete strangers during such a difficult time. thank you.

    i am so happy for you & james that you have been able to share the special bond of breastfeeding once more. that counts as something amazing that i was hoping for, doesn't it? may there be more amazing things to come.

    your courage is beyond words. truly admirable, all of you who hold james close.

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  24. We live in Central Alabama, and we want you to know we are lifting you up in prayer...
    The Sheppard Family
    Dave, Kim, Rob, Jon and Em

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  25. you guys are doing amazing. my heart hurts so badly for you all. this is all in God's plan and it's so hard to understand. many thoughts & prayers.

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