Wednesday, January 4, 2012

Quiet Days

There isn't a lot of new news to report. Patrick is still with us, and he's still (very) stable. We have him on a regiment of relaxants and pain medication to keep him comfortable, so he's sleepy much of the day (and night). He has a few windows of wakefulness (usually late morning and then again in the early evening), but it's not always consistent. He seems to really hear and understand what we are saying when he's awake, but he's not able to communicate at all with us. There are no more eyebrow raises, hand squeezes, thumbs up or mumbled words to discern. Instead, we're learning to read his body for signs of agitation, stress, discomfort or fatigue.

We spend much of our time with him massaging his (shrinking) muscles, relaxing his tensed joints, re-arranging his pillows for better breathing and sleeping positions, and clearing out various orifices so that he has clean passageways to breathe. Soft music plays around the clock, and between his Aveda lotion-ing products and his lavender air freshener, his room is almost spa-like. (Not a bad place/way to live out your last few days, eh?) For the most part, he seems comfortable and comforted, but it's challenging to know how much he understands or grasps what is happening to him. We do our best to remind him of our love for him, and reassure him that he has nothing to fear in leaving us, as we trust he is going to much better, healthier, joy-filled place. (I of course say this confidently to him with tear-stained cheeks, as I'd really rather that he stay here with us, helping me to raise a healthy, happy family together. But, alas, I don't think it will work out like that.)

With each new day, I dread that it could be his last. And with each goodbye, I fear that it's our final parting. And yet, he continues to hold fast. We have no idea how long this dying process will take: it could be weeks or months. I feel fortunate to be able to spend more time with him, to leave no word unsaid or kiss ungiven before he passes...and yet the ongoing daily grief is really hard, to say the least.  Perhaps it's similar to the last days of my pregnancy with Cecilia, when I felt huge, uncomfortable and so anxious to meet her. I knew what the end result would be, but I didn't know when it would come, or how it would precipitate. So, too, here I know that he'll pass, at some point, but I don't know when or how...and perhaps it's better that way.

Cecilia went to Boston with my sister Amy, "my Mimi", as Ceci says. She was very excited to board an airplane with her new rolling backpack and purse full of goodies. As she confidently strode away from me, looking far more grown-up than she is, pulling her carry-on, and daintily holding her purse in front of her, she shouted back, "bye, Mom! I go to Bah-ton with my Mimi!" She's having a blast with her cousins, and probably less aware of my grief, or my constant trips to the hospital. It's a gift to be able to concentrate on PK's care for now, while knowing that she's happily in good hands.

If you'd like to visit Patrick, or come say goodbye, please do. In general, one of us is there with him from about 9am-10pm, so feel free to stop on by. He'll most likely be asleep when you come, but I trust that he hears us, and knows of our presence with him. (Just please don't try to coordinate your visit with me; I'm barely answering phone calls or emails these days, as it's so hard to regurgitate the latest dismal updates, and I don't always know when I'll be at NIH, etc.) Check-in with one of Patrick's sisters, or our priest, David Hanke, if you feel the need to coordinate a visit or get the latest info.

Thanks for your continual prayer and support. Your love, along with the comforting love of God, continues to give us strength for this long, hard journey.

38 comments:

  1. As one who knows what it is like to lose a "soul mate", my heart aches for you and Ceci. Patrick is prayed for at every 9:00 a.m. Sunday Mass at my church and 3 to 4 weekday masses, whenever I attend. You have a long road ahead of you and I encourage you to grieve at your own pace. Ignore people who say you need to "get on with your life". You will do that, but when it is right for you. In the meantime, I will continue to pray for a miracle of healing; it ain't over till it's over.
    Tom Maurer (Andrew's dad)

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  2. Dear Kelly Family,
    My heart goes out to all of you at this stage of Patrick's life. I know from experience how hard it is to say good-bye to someone you love so much. My father passed away in January, 2004 after holding on to life for what seemed a very long time. One night when it was only the 2 of us in his room, I leaned over and whispered into his ear "It's ok, dad. I will be okay if you go because I know that you will still be with me in spirit." He made a sound that I'm sure was a "good-bye" and "I love you". I left the room, and shortly thereafter, he had passed peaceably. It was the hardest thing I ever had to do......so I know what you are going through. God give you the strength and courage to see this through....and I am still praying for a miracle healing for you. Until Patrick decides to leave us, All is possible through our Father Almighty. May he bless you each and every day with all that you may need to get through the day. Amen.

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  3. We all are continuing to pray for all of you.
    Blessings and a sense of Jesus' presence with you in this time -
    Tim

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  4. still praying and having faith on your behalf that miracles can still happen. thanks for sharing and updating. we are on our knees for your heart and patrick's healing every day.

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  5. I do not know you, but I have been praying for you and for you husband. I am still praying for a miracle. I am running a half marathon Saturday and when I run I pray and take intentions. Patrick and you are my special intention. I pray the rosary and divine mercy chaplet as I run and his name will be on my race bib. God bless you.

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  6. We're a Catholic family from New Hampshire who heard about Patrick from another blog and have been praying for both of you ever since. In the end,I guess that's the best anyone can offer. I hope our prayers offer you some comfort while you are bearing this very heavy cross!

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  7. Julie and Patrick,

    Our love is with you and our prayers for comfort and peace continue daily. The Lord has used you in our lives and in the lives of some many around you. You truly are His servants and it is an honor and privilege to have been witness to your faithfulness. Angels are rejoicing right now for the glory that you are bringing to our Savior. In Christ, John and Kaley Lanzetta

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  8. hi julie. i am a friend of anne wagner's and saw a link to your blog on her facebook page. i live up in alaska where it has snowed 12 feet in 4 weeks, and where, especially this time of year, it is dark most hours of the day. i have two babies and a husband and read through your blog one night before Christmas. although we've never met, you and your family have remained in my heart. i think of you at night, and sometimes when one of my babies wakes in the wee hours... looks like there are so many people holding you up in their hearts right now...and i felt compelled to let you know that i am one of them.

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  9. Hi Julie,
    I'm a friend of Rachel Tolliver and also saw a link to this blog via facebook. I wanted to let you know that my husband and I have been praying for you, Patrick, and Cecilia every day. May God surround you and your family with His strength, presence, peace, and wisdom during this incredibly difficult time.
    - Michelle Campbell

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  10. Julie,
    I was Jennifer's roommate in Cairo. I have been following your updates for a month now, and wanted you to know that you and your family have been in my thoughts and prayers daily. I wish I could offer more than this small wish for comfort and peace, but I will continue to pray for Patrick and for all of you as well.

    Sincerely,
    Heather Browne

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  11. Praying for comfort and peace. God bless.

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  12. Julie dear, we are old friends of your folks who have known you/of you for many years....and we are praying for you yet again as you face this painful time. I pray that you can sense the surrounding prayers for you, Cecillia and PK as the days go on.

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  13. Oh, Julie, I can't begin to imagine. Still crying out to the Lord for you and Patrick. You are doing everything right, even though everything must seem so wrong... may the Lord continue to uphold you and strengthen you with His righteous right hand. So thankful for a Savior who has conquered death ("he saves") and is God with us. Love to you!

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  14. Julie, L and I are still with you and Patrick, thinking, praying, and hoping, both for mercy and also the grace to endure the unspeakable.

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  15. Thanks so much for keeping us all updated. I'm sure it's hard to come and write about these challenges but we all appreciate it.

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  16. Praying for you everyday. I don't even know you but I am a friend of Anne Wagoner (I actually also met the Kelly family briefly about ten years ago) and she told me about this blog.
    I pray that you will experience God's grace, peace, comfort and strength every day.

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  17. Julie - I'm so sorry for what you are going through. I knew Patrick just a little in college. I have been reading your blog the last few weeks and cry every time I read it. You and Ceci (and Patrick) are in my prayers.

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  18. Thinking of and praying for you all today

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  19. Still praying for you and Patrick.
    I have an old punched paper motto that is framed and says simply: "Simply to Thy cross I cling." It is a line from the hymn "Rock of Ages." When life is difficult for me, I think of that motto and cling to Jesus' cross and his promises.
    May the Lord bless you and Patrick as you go through this.

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  20. You suggested that your feelings might be compared to your final days of pregnancy. I could not agree more, for Patrick is getting closer to being "born" into his eternal life with God. I repeatedly remind myself that it is never "too soon" to be with Jesus, but it is always too soon to leave our loved ones. One does not cancel out the other. Both are simply true. May God's peace and comfort continue to strengthen you during these days of transition, and may your deep grief be wrapped in certain hope that death will never have the last word.
    Peace of Christ,
    Jeff Bjorck

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  21. Julie,
    I went to elementary school with Patrick. I've been following this for about a month now and am moved to tears each time I read it. I've been in remission for Lymphoma for 3 and a half years. His story hits extremely hard for me. I'm so sorry you're going through this. Please know I'm praying for you and your family.

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  22. continuing to pray many times a day for God's mercy on all three of you and for his miraculous healing of Patrick.

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  23. Julie....we're praying and thinking of you all. In fact, Patrick's face looking at me is with me all the time. My heart is with you both. God's peace to tie your hearts closer,
    Lisa Martinez

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  24. I had the joy of meeting your family last year when I was visiting my sister Amanda. She has been keeping us updated about Patrick and all that you are going through. You are in my daily prayers and Patrick was lifted in prayer by our entire church today. May the gentle hand of Our Loving Father hold and guide you through the days to come.
    Stephanie Reid

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  25. Dearest Julie - so many of us ache and grieve with you. We are all so saddened at this hard road before you and these strange days you find yourself in now. I pray constantly that our God will give you an abiding peace and small joys and blessings while you are in the valley. May these quiet days hold sweetness in your long and loving goodbye. You are lifted up!!!

    Love,
    Naomi

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  26. not sure how often you are on here and seeing the new comments. but i want you to know we are praying for you multiple times a day. you are in my thoughts all the time. the Lord has brought you to mind almost hourly for these past few weeks. praying for you constantly.

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  27. May peace and peace and peace by upon you.

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  28. Thinking of you Julie, and praying for your renewed strength. Sometimes we don't even have strength enough to pray for ourselves, so please know that you are being lifted up. I continue to pray for PK's healing, and trust you all to God's care.

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  29. We love you, Julie, and pray for you and PK unceasingly. As loved ones remind you on these comment-boxes, you are being lifted up around the world. We pray for these sweet final tender moments with Patrick and in parallel, we still implore Jesus for His healing touch. Thy will be done and we will be there for you through it all...
    Much love
    natalie & dave

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  30. Praying for Patrick, you, your sweet daughter, and your families daily. May God hold you all in the palm of His hand now and always.

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  31. I think and pray for you guys everyday and night. We are hoping that whatever the future holds, there will be peace, hope and joy within your hearts. May God lift you and your loved ones up!

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  32. continuing to pray God's mercy on you every day. you are on my heart many times a day and i am crying out to God for you.

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  33. Dear Julie and Patrick's loved ones, praying for all of you night and day, as are many in my church. Trusting God's love for all of you. Oh how He loves you! Hold on to that with everything in you! Praying His grace would truly be sufficient for you each day and night, and that even in the midst of this unbearably hard time that you could have moments of true joy and His peace that passes all understanding.

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    Replies
    1. Thinking of, and praying for all of you. I keep wishing I had kept driving when I got to New Mexico.

      God Bless you all,

      WanderinPat

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  34. Praying for you guys...
    I was moved by this song at church and could not help think of PK running to His arms.
    http://www.youtube.com/watch?v=J168nhvwnGI

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  35. Julie,

    You continue to be in the thoughts and prayers of so many. We are praying for your peace of mind, and courage of heart. We're thanking God for the way He desires to embrace us all, hoping that PK gets to feel that full and warm embrace soon.

    Melissa

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  36. You dont know me but my friend posts your blog updates on facebook. It continually breaks my heart to begin to imagine what you must be going through. We have 3 little ones and one of my fears would be to lose my husband, your reality. I am so dearly sorry and pray you receive comfort during this hard time. We are LDS and I'm not sure your religion, but I was reading this talk by one of our apostles the other day and your family came to mind. It's so hard to comprehend why the Lord places such trials in our life, but knowing He is always with us and knows all that we go through helps in comforting us. Here is the link if you need some uplifting... http://lds.org/general-conference/2011/10/waiting-upon-the-lord-thy-will-be-done?lang=eng

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  37. O Almighty God and Father of our Lord Jesus Christ, we pray to You for Your servant Patrick, whose sickness is bringing him to the end of his earthly life. You are the God whose only-begotten Son taught us that not even the smallest sparrow can fall without Your knowledge, and that You hold all creation in Your merciful arms. Look upon Your servant Patrick. Let his thoughts be quieted with the peace and confidence of his final deliverance into the fullness of Your love. Keep his soul and body pure, and sanctify them during the time he remains among us, that on the last day he may be raised up with all Your saints to live with You in never-ending glory. For to You belong praise and worship, to the Father, Son, and Holy Spirit, now and ever, and unto ages of ages. Amen

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Thanks for your prayers!