Thursday, July 14, 2011

Day Twenty Two


James is resting peacefully. The alarms complaining of his irregular heartbeat, his low pulse, and his respiratory rate are no more. He sleeps with Mommy and Daddy in the middle of the bed, our perfect little angel. He's upside down and on his side here- just the way he likes it.

Our first day home confirmed how absolutely right our decision was. James is visibly more at peace released from the shackles of his monitors and his IVs. The only IV that remains is the TPN drip which feeds him through his port, pumped discretely from a bag the size of a small purse. Kara and I change the batteries and reset it everyday. At the hospital before we got home, I worried so much about where we'd plug it in- I envisioned an IV pole with a three hole plug and just knew our fifty year old home with its two hole outlets would never work. It seems silly, but all of these little details hit me because I was so scared we wouldn't be able to take him home. The reality is much more manageable, a tiny pump and a single line. The hospice nurse said she's had some kids put it in their back pack or their purse. It still gives me chills when she uses the plural.

I wish I could say I knew peace. But the truth is much harder. The truth is I have no idea how to deal with what I am faced with, that I simply act because the circumstances demand it and no choice remains. Someone told me the other day they admired my courage. I am not courageous, I am terrified and stumbling through the motions of my life. I am listening to a hospice nurse explain how to provide my son with doses of ativan to break a seizure- but only if that seizure lasts more than five minutes. Otherwise we save the ativan. I am taking delivery of an oxygen machine to provide him with help breathing- he will need the help. I sign and date, placing the machine in the corner by a toy he'll never use again- and it's still singing at me. I still feel in complete shock about my reality- the dreamlike quality of everyday has not abated. To me courage requires a choice, a decision to overcome and move forward. I never made any choice- I never had a choice. James is the one with courage.

Yesterday Kara, James and I had to get our blood drawn as part of genetic testing to determine the cause of James' tumor, which may but probably is not inheritable. I cannot tolerate needles. I literally faint. As a boy during my various hospital admissions, I regularly required either general anesthesia or a team of seven nurses holding me down to get an IV. Mortified as ever, I very nearly did pass out. James took his blood draw with no complaint. He never complains, and when he could, he only stopped smiling for a few minutes. As always, I am humbled by him. It is a tremendous blessing to be his father.

This morning, our hospice nurse came again to provide guidance through our first full round of giving James his medications. She's from LA, and when she told me that it made perfect sense. She has a very calming, industrious earth mother presence. She appears as comfortable in our home as anywhere else, placing her laptop on the dresser while watching us give James his medicines on our bed, using the same tone she used in James' ICU room when she first met us. She's worked with babies with ATRT before. I envisioned a much grimmer scene somehow.

James himself appears much the same. He is not very responsive- as his brain continues to swell, he will become even less so. Yet my boy still loves the same things- though he cannot feed anymore, his highest level of activity comes when we syringe feed him Kara's milk. It soothing power remains. He hates laying on his back, insisting on wiggling until he finds his way to the side. And even now in his long rest he sleeps the same way, legs akimbo and his back arched, a gymnastic display that is comfortable only to him.

Our pediatrician told us yesterday that the oncologists had told her they had never seen in all of their practice a tumor as aggressive as James'. As the physician's assistant told me yesterday, even if we'd begun chemo the day after James' big surgery, the result would always have been the same. I take comfort in that.

Tonight we took James for a walk, pointing out all the things along the way we thought he'd like and talking about what a beautiful boy he is. I believe he can hear us, and I believe he knows how loved he is. Love was our first gift to him, and the only one that matters. None of the toys, the furniture, or the rest ever mattered. Only love. And that is the gift we will leave him with.

Thank all of you for the overwhelming support we have received from all of you. It means so much to us to know how much people love James and care for him. Knowing that he is working in the world means so much to us- we have always believed James is very special, and we are glad you all agree. Please keep us in your prayers, and pray that James continues to be at peace.

63 comments:

  1. Sending up prayers that HE will bring you comfort and peace.

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  2. Thank you for sharing your sweet boy with the world. I cannot imagine what you, as parents, are going through. My heart breaks for you and at the same time I admire the love and gratefulness for every moment I read in your and your wife's words.

    Your beautiful son was given to you, and this world, for a purpose. Because of him I will hug my children longer and tighter. I will never miss an opportunity to tell them I love them. I will never deny my child's hug or kiss.

    Please tell James thank you for the reminder of what is truly important. I'm sorry you have to even tell your story, but thank you for sharing it. May James have sweet dreams tonight.

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  3. I just read your blog beginning to end, and I sit here in tears for you and James. He is absolutely precious and I cannot begin to even imagine knowing what you are going through. It makes me so mad that babies/children have to go through things like this. You are all in my thoughts and I will forever remember James, even though I never personally knew him.

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  4. Sending you lots of thoughts and prayers. Thank you for sharing your precious boy with us.

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  5. Words cannot describe the ache and deep kinship I feel for your family. I pray that you have many peaceful moments and that your remaining time with Jamesie is filled with miraculous snips of God's assurance.

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  6. I heard about your amazing family from a fellow Baylor alum this morning and have spent the better part of my day reading your blog. My thoughts and prayers are with you, Kara, your sweet boy, and all the rest of your family.

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  7. I was given this link from a friend and as I sit here several hours later after reading the 1st post, my heart hurts with you. I fed my daughters dinner and just couldn't get little James out of my head...and my heart. As a Christian, I do believe in the power of Prayer and the power of healing. The Lord has a purpose...just look at what James' story is doing...touching people, helping people. His life is so precious and I will be diligently praying for your family whom I have never met...I am sorry for the pain you must feel...please take comfort in the love you have for James...and the love Jesus has for you as well.

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  8. I will be praying for your beautiful little boy.
    I can't even begin to imagine what you are going through and I wish you, your family and precious little James, strength and peace in this difficult time. x

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  9. I read about James for the first time yesterday, and can't stop thinking about him. Your family's story is heartbreakingly sad yet also incredibly God glorifying.

    I have been praying hourly for James, and all who love him, especially Kara and Matthew. Blessed as you are to have him as your son, I feel he is really blessed that you are his parents as many would not be equipped to navigate this terrible time so well.

    So from the other side of the world...the north coast of Ireland, love and prayers for you all

    Rachel

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  10. You know how your courageous, your courageous because in the midst of the most awful pain possible you are sharing (so eloquently too) a story that will move so many people to prayer, so much closer to God.

    May God wrap his arms around you and give you love and strength and courage. Please kiss the wee boy from me.

    Bec xxx

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  11. Thank you for sharing your story. I am truly believing for grace-filled days ahead. May you feel his presence more acutely than ever before.

    I also wanted to share with you about the Healing Rooms via skype at Bethel church in Redding, CA on Saturday mornings from 9:15-11:00. I just thought it might be a nice way to be prayed for together, in your home.
    http://www.ibethel.org/healing-rooms-ministry

    just a thought.

    Praying for your little one.

    jamie

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  12. Another blog I read asked that people come over, read your story, and pray. So on Wednesday night I read your story. I have spent two days now thinking of your family and praying for you each time you come to mind. I have no other words - nothing comes close to being adequate to say in so enormous a situation. Please know that you guys are being prayed for. And James has touched so so many lives, mine included (Mandy in SC)

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  13. May that sweet little boy be wrapped in God's love so tightly . . . thinking of you all and praying . . .

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  14. Crying out to a God that knows our pain intimately and is big enough to comfort us in the midst. Praying for your sweet boy and you. I just love his little head full of hair :)

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  15. I don't know Jamesie or either of you personally, but Jamesie has touched my heart deeply. From one parent to another, there is nothing that I could ever say to bring you any relief from your excruciating pain, nor could you offer me relief if I were in your place. What I can offer to your family is love. Prayers and love. James is a precious and amazing baby. I'm humbled that you are so graciously letting us meet him and I want to assure you that his precious spirit is touching and changing hearts. May God's peace wrap around your family.

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  16. In all my life, I have NEVER seen such a beautiful little boy - I believe that is because God's light shines right through Jame's beautiful eyes. Jame's life is touching so many people and reaching thousands. It is amazing how such a small little boy can have such a huge calling, but your James did. Thank you James. (Katie in CO)

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  17. Everyone in your family is courageous. Yes, there is much going on you have little or no choice about. However, where choice is granted (how you handle this, what to do with your suffering, whether to remain soft or become bitter, whether to be thankful or resentful) you are making beautiful choices. Maybe you don't feel like you're doing a perfect job at it, but I think it's apparent that you are doing your best and God is more than making up for whatever weaknesses you perceive in yourself. You are being very strong and very courageous. You are sharing your pain with others -- complete strangers! -- demonstrating a trust that God will make good of this awful, awful time. Again, MANY blessings on you!

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  18. Prayers for peace and strength. . .for all of you.

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  19. We are praying for your sweet boy and your family.

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  20. I'm continuing to pray for you and your precious child.

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  21. James story, your story, has touched me beyond words. I will continue to pray for all of you. Your words are a gift much as your son is your gift. God bless all of you.

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  22. Coming to you via Angie Smith, an angel on this earth if there ever was one. Thank you for poignantly sharing yours and James' story and for transparently living the Kingdom life. Praying for you, Kara and James. Praying for these bittersweet days ahead, that God would hold you tightly. Blessings to you.

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  23. I am praying for your sweet family and especially precious Jamesie. Your story has really hit home with me. I admire you both, and know the Lord is working through James. I am praying for James to have rest and peace, without pain. God bless you.

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  24. Thank you for sharing your story and sharing James' story. It is such a testament to the grace of God in your family that you have responded to such a painful tragedy with faith, hope and love. You are courageous parents with a beautiful, brave boy. Your family continues to inspire me as a parent and follower of Jesus. And James is continuing to point me towards my Savior and draw me to my knees in prayer and praise. I will continue to share your story and join in the thousands lifting James and your family to the Father.

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  25. Hi Matthew, Kara and James. You don't know me, but I feel I know you through your blogs. We do have a friend in common though; Jessica Schwartz is my daughter. She introduced me to James via your monthly photos, Kara, that were posted on Facebook. I giggled over that hair! I have never seen anything like it. Gorgeous. I have laughed and cried with you while reading your blogs. I have come to respect and admire the way you have faced your crisis, and especially for the way you have let God reassure and guide each decision you have made along the way. No one wants to face what you are facing, it is any parents' nightmare. As children of The Creator we can only believe, as you have stated so eloquently previously, that He has a plan more wonderful for James that our earthly minds cannot comprehend it. My prayers for each one of you is to feel the comfort of our Lord during all this and may your time with James be sweet.

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  26. Lifting you and your precious angel, James, up in prayer. God will hold you tight, carry you through and bring you peace. God bless.

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  27. Words cannot be accurately expressed as to how this makes me feel. I know that words cannot actively portray how you are feeling. We do not understand God's plan, but I have a better understanding today of what James' life has meant to me. He simply is an angel. The most beautiful angel I have ever seen. My troubles are small in comparison with the pain you are dealing with at this time. A past boyfriend's nephew went through this same ordeal, his name was Jimmy. I thank you for creating such a beautiful baby. His eyes speak to me so, and I am not a baby person. I have asked my friends on FB to pray for you, strength in numbers. I pray that you will find peace and strength. I pray that James is free from pain. Aren't we here to protect the children and animals? I will always carry James in my heart. God sent his "angel" to speak to the masses. Job well done, James. You are loved.....

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  28. Praying for your family on this difficult journey.

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  29. You are absolutely right about the impact James has made. Your little boy has changed my life and my way of thinking forever. Your family and James have left a permanent brand on my brain and I will never look at life the same again. I am captivated by your words and pictures of your beautiful baby boy. If there is any peace in this, please know that he has changed my life. I look at my son differently, my husband differently, and my life differently. What I thought were problems in my life, are not problems at all and it's because of James that I can see life clearly now. I will continue to think of you and your family and especially James during this time. God Bless You!

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  30. New follower from Canada - we are praying here for you as well!!!

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  31. You may not consider yourself courageous and your explanation of why is remarkable, but to the rest of us (even those who have never met you) we see courage. Courage because of your faith in GOD. That my friend is a choice. You, your wife and your beautiful son have chosen to follow our Heavenly Father and respond to your situation with GOD's greatest commandment - LOVE. As my heart bleeds for your situation, I find myself loving harder towards my own family. I will continue to lift you, your wife and your precious child up in prayer - Blessings, Debbie (HB, Calif).

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  32. Kara... Our whole family has been praying for all of you during this trauma. Erin just sent me the link to your blog. I am so happy you two decided to bring James home where he can be comforted and surrounded by the people that love him. I don't know where you get your courage, but I so admire you for it. Before any of this even happened, anyone could see what an amazing Mom you were just by watching your Facebook posts. I fell in love with James on FB and my heart is breaking now. I wish there was something I could say that would help, but am at a total loss. Just know that you, James and your families are constantly in my thoughts and prayers. I am confident that God will take extra special care of your sweet son and will reveal to you His plan for you. Keep the faith and give that sweet angel a kiss from me.

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  33. praying for unspeakable peace and comfort that is only deliver by our amazing and awesome God. He is still faithful and He will cradle little Jamesie in His precious and loving arms.

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  34. You don't know, but I've been following your story for a few weeks since a Twitter friend shared the link.

    I too have a little boy and know the unspeakable love a parent feels. My heart has been hurting for you and I have lifted you up so many times; I will continue to do so in prayer.

    Please know that you and your sweet, beautiful boy are being covered up in prayer. I hope that you can feel just a bit of that peace and know that your son is touching lives even as you read this.

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  35. Prayers are a given. It is an honor to read your thoughts and feelings. We will all need to draw on what we learn from your experience in some way on some other day. God is blessing your son. He gave him parents like you to be his voice. And you do that perfectly.

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  36. I found your blog through another, and I want you to know how brave and strong your son is. When my mother passed away, the hospice nurse said that research has shown that hearing is the last sense to leave a dying patient, so you are absolutely right to keep talking with James and letting him know you're there. On some level, he does hear you.

    I'm so sorry for what you're going through. You, your wife and your sweet, handsome little boy will be in my prayers.

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  37. Peace and comfort prayers. James is precious, but you already know that.

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  38. I am praying for your precious little boy and your family! You and your family will remain in my thoughts and prayers!

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  39. Matthew and Kara, I just saw your blog posted on a fellow classmate's facebook page today and have been reading James' story. Words cannot express how sorry I am that you are going through this. And, despite what you say, you are extremely courageous and your faith is overwhelming. I will be praying for you both and, of course, for beautiful James. You are both such amazing parents and are wonderful role models for James as I am sure he is for you. He knows you are there and are making his days happy. I hope you can find peace in this time and I know you have a lot of people praying for you.

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  40. We are all praying for your sweet son.

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  41. I don't think I've stopped thinking about your family for more than a few minutes since I first read this blog three days ago. Your love for James is such an inspiration.

    A few weeks ago our pastor spoke on why God allows sorrow in our lives. He said it was for one of two reasons. First, for the non-believer or the person weak in faith, the sorrow makes us vulnerable and available to accept God and His wonderful love. And second, for those that know Christ, the sorrow provides an opportunity to witness to others how awesome God's love is, even in the worst of times. The pastor went on to say that he believes God often saves the greatest sorrow for the strongest people of faith because He trusts and loves those people the most. God trusts these special people to reflect His glory when the rest of us would succumb to anger and self pity. As I come to know your unbelievable commitment to God during the greatest of sorrow, I believe you and James are three of those people, most trusted and loved by God, meant to be a light to the rest of us.

    In your post above, you said that you were not courageous because courage requires a choice. As a parent, I completely understand what you say next, that you did not have a choice. Loving our children and doing everything we can to make every moment the best possible is not a choice. It's being a parent. But I still think you are courageous because you have made a choice to remain faithful to God. You have choosen to surround James with God's love. You have choosen to focus on God's blessings. This is not something most of us could do. It is courageous.

    We are all changed for having heard your story. We are changed by seeing God's wonderful light in James's eyes. We are changed by witnessing your perfect love of your perfect little boy. You are courageous. And you are faithful.

    I am so sorry for your sorrow. I have wept for you, I am weeping for you now. But I know God has a perfect plan. And I rejoice in the thought that James will soon be cuddled in the arms of our Lord. He will keep James warm. He will make James laugh. James will always feel safe and loved.

    James is the light. You are the light. I will continue to pray for you. God bless you and James.

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  42. Praying for your and your family, and your precious son James. May HE give you comfort, rest and peace.

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  43. I'm continuing to pray for James and his entire family.

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  44. I am in awe of you and of your sweet baby. James is so blessed to have such wonderful parents who show such love. We continue to pray for you and hope you find comfort as you cherish James. God bless all of you.

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  45. I came here earlier today and just had to come back to tell you that YES, you are COURAGEOUS! To stand tall and proclaim God when you just want to curl up and pretend it's all a dream. To wake up and face another day and focus on loving your son well. You are brave, and you are courageous, and your son's life and story carry weight in this world. His story has certainly resonated in my heart, and I know I'm not alone. Praying for you!

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  46. I am praying for you and your family. Your story touches my heart so much. I am so glad that Jesus has given you peace about your decision and that you have the comfort of knowing that James will soon rest in His arms, free from any pain or discomfort. I am praying HIS strength over your family. "So do not fear, for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

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  47. After reading your journey with James, I wanted to let you know that you are all in my prayers. I can't begin to imagine what you are going through, but I admire your strength in such a difficult time. Thank you for sharing your journey with us. I can feel your love for James through your words. As lucky as your are to have him, he is just as lucky to have you both!! Praying for James' comfort as the days progress.

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  48. Kara, Matthew and sweet James,

    I just read your blog from beginning to end, and I am now in tears for you all. We do not know each other, but we know some of the same people. My husband and I went to Baylor. I found your blog from a friend's facebook page. I recognized James' newborn photo immediately from the website of the photographer we used as well. Who could miss all that hair and his beautiful face. I have been clutching my 2 month old son and daughter all day as I read. I can not even begin to fathom what you are going through or how you make it through the days. Your strength is amazing and your sorrow is great. I can only hope that you all have peace today and hopefully tomorrow as well. I will be praying for James every chance I get. When we say our prayers at night, we will pray for James. You will never be far from our thoughts. Thank you for sharing your story with me. He has touched so many. May God send His angels to comfort you and your son, and may He grant peace and comfort to your home in the days to come. Love to you all. Julia, AJ and Caroline

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  49. A friend of mine in a roundabout way, Amanda Skelte, posted your blog today. I read the latest entry and then had to go back and read it all, day by day. And then I closed my eyes, here on my screened in porch in Tennessee, and prayed. I prayed for peace for all of you, for you to feel God's arms around you. For Him to give you strength. I prayed for James and for the blessing he has been to you. And then my little boy came out here and I held him and cried. From one mother to another, you are loved and on my heart.

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  50. Praying for comfort and peace during this difficult time. James is truly an Angel sent from God. I admire your strength and courage. Thank you for sharing this journey with us.

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  51. I'm a mere stranger however I read about your sweet baby every day and pray for y'all even more frequently! My heart will be forever touched by y'alls story as it reminds me that every day with my babies is so precious!

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  52. I will echo that your beautiful,brave baby and your willingness to share his story has impacted my life forever. I will never parent the same way. I will never take my time with my boys (ages 6 and almost 1) for granted again. I learned of your family through my SLP grad school friend, Shelly Anderson Terry right after James was diagnosed with the brain tumor about 3 weeks ago. In that space of time, I think I have prayed more than I have in the last 3 years. As a result, I feel closer to God.
    I am so grateful that you feel at peace with your decision as I know it must have been excruciating to make. It is unfair for anyone to ask you to feel completely at peace with the prognosis that was given. You have every right to grieve and be angry at times. You are human. You are both amazing parents to James. Thanks for the update on the sweet boy we have all grown to love so much. Continued prayers for you all.

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  53. Just want you guys to know that I also have been continuously praying for you all. I am still praying for a miracle but peace as well. Thank you again for sharing part of your life with the world. Like Andrea says above me, my life is forever changed by reading about yours.

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  54. My heart hurts so much for you but at the same time you two have been blessed with this wonderful little boy. Hang in there. Many prayers are being said for your family. I happened upon your story over Twitter. I haven't stopped thinking about James. Unfortunately, I knew a little girl named Lucy who had the same ATRT tumor as James. She was diagnosed June 6th, 2010 and had it removed on June 8th, 2010 (her 1st birthday). She earned her wings last November. Stay strong! Here is Lucy's caringbridge site... http://www.caringbridge.org/visit/lucyweber

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  55. Thank you both for sharing your testimony of love - it is truly beautiful. As a parent, I know right now you would trade having more time with your son for touching lives, even if you touched every life in the world....but I wanted to let you know you've touched my heart deeply. I pray you feel Jesus' loving arms around you right now and in the days to come. Your precious James is so blessed to have you as parents.

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  56. I have read your story from beginning, and I won't say end because I believe James' story will continue long after we are even gone. I am in awe of your love for you precious angel. He is truly special and has forever impacted the world we live in. May he rest in peace at home surrounded by the two people that love him the most.

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  57. I heard your story through a post on facebook and am grateful because if it hadn't shown up, I would never have met Sweet Baby James. I printed pics (wasn't sure I could, but glad I could) of him to show my parents (they don't do computers). I wept as I showed his pictures and told of his story as I am now. I don't think I have EVER seen a more beautiful little boy.

    Sometimes life just isn't fair and I cannot imagine what you are going through. Tears stream down my face as I write this and I can only IMAGINE the hurt you feel as I don't even know you or James.

    All I know, is God is good and that heaven is going to be a much brighter place when Jamesie shows up. Much love and prayers to you all. ♥

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  58. I just came across your blog through another bloggers and I'm so sorry for what you and your family are having to endure. I pray that you and your wife and especially James will be at peace and feel the comfort of God's love around you.

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  59. I just wanted to let you all know that you will be in the center of my prayers!!! I love your son after reading some of your blog and watching your photo shoot! He is an amazingly strong and beautiful little boy! We have adopted three little girls and I am carrying a son that was actually due today but he's decided to be late... I cried uncontrollably and my heart just aches for all of you as I realized how precious life really is (and I thought I knew before hand).

    Just remember, NEVER give up hope... miracles happen each and every day, although I totally understand and agree with you that the miracle may be that your son is God's sweet angel and he needs him with him... God's plan will be a perfect one and I just pray that little James is cradled in the arms of the Lord and that you both find the peace you're looking for! I realize you have plenty of friends and support but please know that if you ever need anything, you can find me on Facebook!

    Your son is a beautiful little angel and I want you to know that if I've ever taken my children for granted that from this day forward I will not!!!! Thank you for sharing your amazing story of love!! Love Always in Christ, Tabatha!

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  60. My thoughts are with you all. I have no words that could possibly alleviate anything that you're feeling. James is in my heart and I know I will carry him there. Peace, Love, Light to you all

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  61. Your story has touched my heart on so many different levels. Please know I've constantly had you all in my prayers.

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