Tuesday, January 17, 2012

The End is Near

It's been awhile since I've posted any update on Patrick, but it was hard to know what to say. Patrick had plateaued, continuing to demonstrate brief moments of wakefulness, maintaining fairly calm sleep patterns, which were induced with and managed by a variety of sedatives and muscle relaxants. In general, he appears to be in little pain, although the only signs of discomfort we have to watch for include some muscle tightness/rigidity and seemingly spontaneous full-body perspiration. We continue to keep vigil beside him, rearranging his pillows and re-positioning him in the same bed he's laid in since Dec 1st (!). We massage his now-teeny muscles, clean out his ears, nose and mouth, and do anything we can to keep him (at least appearing) comfortable.

But the time came--the day I desperately dreaded--when we had to ask his medical team to take out his feeding tube. He is no longer processing his liquid "food" well: he's begun producing excess mucus, urinating less, sounding more congested, and overall shutting down on us -- on life. With much deliberation, counsel and prayer, we became very aware that we had reached a critical point where if the feeding continued, it could become more detrimental to him than helpful. He could aspirate the food and excess mucus into his lungs, which would then likely lead to pneumonia...a bothersome way to die. He's also begun to develop bedsores from sitting fairly upright -- a position necessary with tube feeding. So, as of yesterday afternoon, he's no longer receiving any nutrients. For now, he'll continue to receive his meds through the tube that leads into his nose, as he doesn't seem too bothered by the thin tube leading to his stomach. His picc line fell out last week, and when the nurses attempted to install an IV in it's place, his body rejected the needles: apparently noted signs that his body is ready to enter it's final rest. So, unless we want to stick meds up his, uh, rear-end, the nose is a pretty good way to manage his pain. He's able to lay on his back now, which he seems to really enjoy.

It's so hard not to feel like we're "giving up" on him, and yet I firmly trust that God is not giving up on him (or us). We're simply letting Patrick go, following his body's organic cues, allowing him to tell us when he's ready to pass from this life to the next. At this point, we just continue to watch and wait. We've been told that his 34 year old body will eventually shut down (somehow), and that it will likely happen in the next two weeks. My prayer now is that he'll pass peacefully, that he won't feel any pain in the process, and that he'll sense our love for him in his last days with us.

Cecilia is back from Boston, and it's so wonderful to have her home with me, if for nothing else to remind me that there is much life left to live. And yet, I'm realizing what my life will look like as a single parent, being the only one there to respond to her cries at night, or her tantrums in the late afternoon. It's completely overwhelming to think about having to make all of the parenting decisions by myself. I hope and pray that God will grant me the strength, wisdom, and courage to meet each day with some sense of renewed grace (and energy!).

Thank you for your continual prayers, support and notes of encouragement (yes, I do read them!). Someday I will get around to thanking you for all of your help, gifts and love....but for now here's a big THANK YOU to each of you. I know full well that I couldn't be getting through this "valley of the shadow of death" without you.

Blessings to all of you this day.
Julie

81 comments:

  1. Praying peace over your family - and that you feel God's wisdom and perfect peace with every decision that's made with regard to PK's care. Praying too for a peaceful, comfortable passing surrounded by love into an even greater love waiting for him with his savior.

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  2. Tough but necessary decision. May he pass peacefully into rest. And I wish you strength for the time ahead. Single parenting is difficult and to do it while grieving must be even harder.

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  3. We are going to miss you, Patrick.

    Jesus carry you home.

    Robyn Beckley Vining

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  4. Praying for you Julie. So thankful that God is your strength and provision... and He will not disappoint... but oh, I'm so sorry for the hardness you are going through. Praying that Patrick will pass peacefully and without pain. And giving thanks for the love that y'all share and the life of Cecilia.

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  5. You are an example of God's grace. Thank you. May the Spirit comfort you all.

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    1. I so agree! Your blogs, Julie, show such wisdom and emotional maturity. Patrick is a blessed man to have you at his side, and the mother of his baby girl.

      I know how hard the decision was; we had to make a similar decision with my Mom 20 years ago. For what it's worth, I believe you made the right decision.

      Thanks again for sharing such depth in your blogs... I will pray for you and Ceci for the rest of my life.

      WanderinPat

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  6. Julie, Laura and I ache for you and will continue to hope with you for rest, peace, and freedom for Pk in both his body and spirit in these last days. Also, we hope for strength, courage, and grace for you as you grieve, let go, and then look forward. We have always believed in you both from the very beginning and continue to do so now, even as his life - and your life together - come to an unspeakably early end.

    Lord, have mercy. Christ, have mercy. Lord, grant us peace.

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  7. I am blown away by your strength and faith...We are all praying for you and the rest of your family. We will see him again.

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  8. Amberleigh Scully WilhlemJanuary 17, 2012 at 1:54 PM

    Thank you for sharing; we are praying and heartbroken at this and encouraged by you and your gracious words. (I knew Patrick a little in college, but mostly his sweet sister Christine.)

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  9. Julie - Your faith in the Lord during this time of suffering is an incredible testimony and an encouragement to all of us.

    Still praising God that Cecilia's final moments with Patrick were so precious...I pray that her memories of him (and stories that you and all that knew him share with her) are equally so. God will give you grace and peace and wisdom and discernment (and energy!) to be an incredible single parent to Cecilia, I have no doubt.

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  10. Considering your Christmas Eve post, this is not a surprise, but the Lord gift three precious weeks, with a reminder that you will see him again!

    May the Lord guide you and comfort you and Cecilia into this "new normal," maybe not where you'd desire to go, but still trusting Jesus, in whom is our hope.

    Kevin

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  11. Praying for the peace that passes all understanding to guard your heart and mind in Christ Jesus --- as He walks through the shadow of the valley with you each.

    Bill and Cindy Evans

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  12. Julie...Aaron, the boys and I are praying. Praying for your strength to see this through and praying for peaceful rest for Patrick. I'm heart-sick over this most of the time. Thanks for the update. And, if you need parenting support, please let me know. I've done this for 17 years now for six kiddos. While it's not at ALL the same, I had a taste of single parenting when Aaron was in Iraq for a year and a half and I was back here with the five boys. Again, I know you have so much support, but I do know parenting and grief. I'm so sorry. Jesus is going before all of you...I believe there will be a rainbow through the rain.
    Lisa Martinez

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  13. We are praying for you. When we went through a loss before, this poem was a comfort, wanted to share it with you.

    The Walk to Heaven, By Greg Stier

    The shining light of glorious dawn
    Not earth or sky but vast beyond
    Celestial shores and glassy seas
    The joys of heaven await for me.

    My feet upon the sandy shore
    No pain just joy forevermore
    I make my way to golden streets
    My feet move fast, my heart it beats.

    From where I am I see the city
    Gold and jewels and all things pretty
    I see the brilliant throne of Christ
    Empty and brilliant, like golden ice.

    I am coming closer now
    I hear the songs of angel crowds
    The light is bright on my brand new eyes
    And booming sounds by songs disguised.

    It sounds like thunder from above
    Mixed with heavenly shouts of joy and love.
    What is this crescendo in my ears?
    Is this something that I should fear?

    I push my way past pearly gates
    With no idea of what awaits.
    And once I do the sound explodes
    It hurts my ears and shocks my soul.

    The crowds of heaven stand in applause,
    Angelic beings and saints of God.
    They clap and cheer and yell for me
    As I walk in awe down crowded streets.

    Who am I to deserve what I see?
    My life was quiet anonymity.
    But as I walk through cheering crowd
    The reasons start to get real loud.

    One by one they kiss my hand
    Thousands I’d touched by acts not grand,
    But tiny deeds of love sincere
    Cold cups of water and listening ears.
    Tears burst and fill my brand new eyes
    The approaching figure my tears disguise.
    Another girl I stopped to serve?
    A man I helped as he begged on curb?

    With one fell swoop my tears erased,
    The hand of God upon my face.
    Christ himself wiped them away
    There’s not a word that I can say.

    As the crowd cheers louder at the sight
    The God of wonder and glorious light
    Leans in and kisses my still moist cheek
    This is more than I could ever seek.

    And then he whispers in my ear
    I can barely hear it through the cheers
    You have won the race I had you run.
    And now I say to you ‘well done’.”

    More than heavenly cheers or crowns of gold
    Those words close to my heart I’ll hold
    Crowds of heaven may give their laud
    But it fades compared to the applause of God.

    "And you will receive a rich welcome into the eternal kingdom of our Lord and Savior Jesus Christ…” 2 Peter 1:11

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  14. Julie,

    The strength you display is amazing. Know that even though I don't know you personally (I know you through mutual friends) and your story has touched my heart. I have been praying for you and Patrick since I first heard about it all right before Christmas. May God give you supernatural strength and comfort during these next few days and weeks. You have an incredible support system around you. I will keep praying.

    Blessings, Jen Prevette

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  15. Dear Julie and Team Patrick,

    We are amazed by the grace, strength and courage you have exhibited throughout this journey. It seems that Patrick is ready to begin his eternal life. That reminds me of this verse, "I have fought the good fight, I have finished the race, I have kept the faith." (2 Timothy 4:7) That verse is true about you, Patrick and Team Patrick. Love for him will not end even though you will not see him on this side of heaven.

    Our love to you,
    Martha and Jeff

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  16. Julie and Patrick,

    We are continuing to lift you, precious Cecilia, and your family up to our Lord and Savior. I cannot imagine how difficult and painful this must be for you (or how emotionally and physically exhausted you are). Just reading your accounts of what Patrick is going through brings tears to my eyes - and I don't even know you personally! Thank you for your openness, for sharing Patrick's journey to Heaven, and for being vulnerable with your feelings and emotions. We will continue to ask God to provide you with the strength, peace, and resolve, that only He can provide.

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  17. I'm at a loss for words, sweet Julie and Patrick. We just want to say again that we are praying...praying...praying. May the Lord give you all such peace and comfort. May Patrick feel the sweet love and arms of his heavenly Father as he continues his journey. What a joyful day it will be when we are all together again. Praise God.

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  18. Sammy Mobile MwanikiJanuary 17, 2012 at 5:11 PM

    Though far away in Kenya,you are in our prayers Julie.

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  19. I don't know you personally, but I sort of feel like I do now from all that you've shared on this blog. A friend of mine posted a link to it on her FB page asking for prayer and I've been following Patrick's story along with your story as well. It's 4 p.m. and my kids are starting to act up (as they usually do at this time)and I find myself counting down the minutes until my husband gets home to take some of this load off of my shoulders...and now I am in tears feeling like I take things for granted too much. You are so strong and such an inspiration to me! I am praying for you, Cecilia, your entire family, and of course, Patrick. I will pray that his passing is peaceful and that God gives the rest of you the strength you need to make it through the hard days of mourning ahead. I struggle to understand why God allows things like this to happen, yet I know He has a purpose and plan. I can't wait to meet Patrick in Heaven someday...he sounds like a stand up guy!

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  20. Prayers for your peace as well as Patrick's.

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  21. Julie, I cannot imagine what a difficult decision this has been for you. You certainly have prayers regularly from my family and my extended family that has been praying for all of you. I'm so grateful for the love of Christ that radiates from you. May we all learn from your great love of the Lord.

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  22. My thoughts and prayers are with you Julie and Mary Ann and Pat as well as your family. I know the LORD will see you thru. In Jesus, Carol Hoffman

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  23. My prayers are for Patrick and all of you, but especially for you, Julie, as you walk through these difficult days and at the same time aware of what is ahead for you and Ceci. May God grant you continued strength now and in the days ahead.
    Beth B.

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  24. I went through a simular situation about a year ago with my dad. He went into a coma and never woke up. My mom had to make the difficult decisions that you are faced with now. And the beauty of it all is that you are doing this for him and to keep your husband comfortable. You are trusting in the Lord's will and giving Him complete control. When I think about that time in my life I am amazed at how the Lord carried me so gracefully through it all. Without Him I would have fallen apart. Being a mother of four I couldn't imagine parenting them alone. From the sound of your posts you are surrounded by an amazing, loving family. With your faith in God and your family you will never be alone. You have a beautiful little girl that in moments she will giggle a certain way or say something that when you look at her you will see your husband. It will be the most beautiful thing in the world at that moment. Our youngest was 9 months old when my dad passed. He is now almost two. Sometimes it's as simple as a facial expression that will remind me of my dad. It makes me heart soar! My heart still aches for him to be with us but I know he is in a far better place and in those quiet moments I am just so greatful that the Lord gave him to us for that time. It reminds me of the poem, "Footsteps in the Sand"
    One night a man had a dream.
    He dreamed he was walking along
    the beach with the Lord.

    Across the dark sky flashed scenes from his life.
    For each scene, he noticed
    two sets of footprints in the sand,
    one beloning to him and the other to the Lord.

    When the last scene of his life flashed before him,
    he looked back at the footprints in the sand.
    He noticed that many times along the path of his life
    there was only one set of footprints.
    He also noticed that it happened at the
    very lowest and saddest times in his life.
    This bothered him and he questioned the Lord about it.

    "Lord, you said that once I decided to follow you,
    you'd walk with me all the way.
    But I have noticed that during the most
    troublesome times in my life there is
    only one set of footprints.
    I don't understand why when I needed you most
    you would leave me."

    The Lord replied "My precious, precious child,
    I love you and would never leave you.
    During your times of trial and suffereing,
    when you see only one set of footprints in the sand,
    it was then that I carried you."

    I pray that these words will bring you comfort in the following days and weeks ahead.

    In Christian Love,
    Brandy W

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  25. Julie,
    We wept over your words tonight and we pray that Jesus's comforting touch will be upon Patrick teach and the days ahead. We pray that the Holy Spirit will continue to fill you with a "peaceful strength" as you manage the uncertainty of the days ahead and for parenting Cecilia. We love you. We stand with you now. Praying for Patrick as he prepares to meet his Savior.
    Love and blessings,
    natalie & dave

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  26. We've been praying for you and yours daily, Julie. If you get a chance, listen to Chris Rice's CD, Amazing. There's a song called Breakfast Table that I've always loved. I pray that it will bring you a little smile at this unbelievably difficult time. Here are some of the words, but it's so much better with the music...
    "Save me a seat at the breakfast table
    Save me a dance round the Milky Way
    Save me a thousand years to whipser in your ears
    All I've wanted to say
    Save me a smile and an angel's feather
    Save me a walk down the streets of gold
    And baby, we'll change our minds just like old times
    And maybe we'll just fly away
    Or maybe we'll stay

    My lucky doll, you're in heaven before me
    You were my taste of heaven here
    Remember we loved to talk about it, we couldn't wait to get there
    So you go on and find your way now
    But remember I'm here missing you
    Do me a favor and say hey to Jesus
    And tell him I'm missing him too
    Tell him I'm missing him too

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  27. We still pray for Patrick and you every day....for peace, comfort and God's will. God Bless you for your faithfulness to Him and to Patrick. Cindy in NH

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  28. There are some wonderful people waiting for him up there!! And Heaven will become that much sweeter as he goes on ahead. You are in our constant thoughts and prayers - wish we were there to hold you and cry with you. May God give you unexplainable peace. love, Becky & Marty

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  29. I do not know you or your family. I was led to your blog through one of my nephews college friends. I am, though, a sister in Christ. I am deeply touched by your post. I pray for comfort and peace for you and your family as you go through this difficult time. May the Lord be with you so closely that you physically feel His presence when you need it most. Continued prayers for you, Becky.

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  30. your grace through this impossibly hard journey has blessed me and so many others. you facing the unknown with such courage and presence of mind and heart. praying many blessings over all of you.

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  31. Julie, I just can imagine what you are goin thru. We went through a similar farewell to my mother a year ago. Know that Patrick is fully in his hands. And so are you. It is hard to believe, but please consider that it is His choice to bring him and bring you to this place. We love you and are praying for you.
    Ehsan and Maija

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  32. Grace and peace to you. Praying for a peaceful passage for all.

    Katherine (Smith) Edwards

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  33. Dear Sister in Christ,
    You are amazing. My words cannot express the grief I feel for you, and the lasting hope I see in your precious words. I am living in Richmond, VA attending Hope Church and have seen your blog on my friends FB pages. I will continue to pray form you and your sweet baby girls lives after this season has changed and a new one has begun. My peace falls on your eye focused on the Lord or God who forever is faithful, and as His servant I will always lend my hand to you.

    Love to you and your family-

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  34. Julie, I don't know you personally, but I want you to know that I am praying for Patrick, you, and your family at this difficult time, and I will continue to pray in the challenging days ahead.

    Someday, you and Patrick will meet again, and I know he will look at you with love, pride, wonderment, and gratitude for how gracefully you have walked this path. You found each other for a reason, and as difficult as it is to part, I think you will see that reason often in Cecilia's beautiful face. I'm so sorry for your ongoing loss and pray that Patrick simply opens his eyes to find himself resting peacefully in the arms of God.

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  35. i've commented before. we are strangers, but sisters in Christ. i have a have 2 yr old daughter (as well as 3 other children) and I'm a Single Mom. i live in NOVA. my prayers are with you.

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  36. Praying for you Julie. It's so clear God is sustaining you. His compassions never fail; they are new every morning. Great is His faithfulness.

    From NC,
    Elizabeth Brill

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  37. My heart breaks for you at this time. But, I am also so inspired by your faith and by God. He is with you, He is always with you! There are people you don't know sending you prayers and love!

    Love in Him,
    Mikaela

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  38. praying for you today

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  39. We at Christar US are praying daily for you and Patrick. We hurt for you! We're very grateful to your parents for hosting our son who recently returned to the US from Canada.
    Hugs,
    Esther Luna

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  40. Praying for you Patrick and your family. May God grant peace & strength to you & your family.
    Bhatnagars, India.

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  41. Julie,
    All of us at St Paul's are praying consistently for all of you. We prayed for you at vestry last night and told fun stories of your time with us. Everyone here loves and misses you guys.
    Peace
    Tim

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  42. My heart is breaking for you, Cecilia and most of all Patrick! I will continue to pray for all three of you. You show so much courage in your posts that it's admirable. I hope your strength continues for the sake of Patrick and your little girl.

    God Bless Patrick and your family.

    Hugs,
    Devon (Convry) Pomroy

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  43. Dear Julie,
    I do not know you, but I have a sweet friend (Katherine Smith Edwards) who cares enough about Patrick and those he loves to keep your situation ever before her friends, asking us to pray. That is the way the beautiful body of Christ works. I am praying for you, Patrick and your precious little Cecelia, mostly that God's powerful and peaceful presence will be very tangible and avialable to you now.
    In His Grace,
    Barb Branham

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  44. oh Julie, why do you have to write so darn eloquently/beautifully? I think b/c it reflects your sweet and Godly heart. (But it just tears me up.) Prov 3: 5, 6 ...Lean not on your own understanding. In all your ways acknowledge Him, and He WILL make your paths straight. You are one strong woman, b/c the Lord does not give us more than we can handle.
    love, Becca and Brenden

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  45. I don't know you personally but we have several mutual friends and I have seen them post your blog on Facebook. I just wanted you to know that since I came across your story in December, I have been praying for you all and checking in. I will continue to pray, even as I am heartbroken for you. Praying for His strength, comfort, and peace for you all.

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  46. Julie,

    I am amazed by your eloquence and your honesty--as you write in this time of pain, sadness and grief. I recently heard a song that I thought I would share--

    RITA
    Bebo Norman

    Lay down softly in our sorrow
    Lay down sister to die
    And cover over, my sweet Father
    Cover over her eyes

    Your broken body, it cannot weather
    The years your youth still longs to spend
    So go down graceful, sleep with the angels
    And wake up whole again

    ‘Cause it was not your time; that's a useless line
    A fallen world took your life

    But the God that sometimes can't be found
    Will wrap Himself around you
    So lay down, sister, lay down

    Slower passing are the hours
    To tell this tale that takes its time
    But the finest moment, no man can measure
    Is to look your Savior in the eyes

    So take her tender to Your table
    Take her from this killing floor
    To taste the water that is forever
    Let her be thirsty no more

    It was not her time; that's a useless line
    A fallen world took her life

    But the God that sometimes can't be found
    Will wrap Himself around you
    So lay down, sister, lay down

    And the God that sometimes can't be found
    Will wrap Himself around you
    So lay down, Rita, lay down

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  47. I love you, JC.

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  48. Oh Julie! We ache for you and for all you, Cecilia and Patrick are facing in these dark days. I wonder if you want to lie in Patrick's place and take this from him, as our savior Christ has already done for each of us. Praying for you and inspired by your eloquent words and graciousness.

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  49. Julie,
    I'm sorry to hear about what you are going through. You, Patrick, and Cecilia are in my prayers. If you ever make it back to Charlotte and need a helping hand please feel free to call me.

    “God of all comfort, today in my time of sorrow, I draw from your wellspring of reassurance and relief. At this time when distress would overwhelm me, by your mighty power help me to experience a deep sense of your love enfolding and carrying me as a father carries his child. Father, I know you have answered my prayer, and despite my circumstances, I choose to believe you Word that you will never leave. I step forth in your peace, for I hope in you Lord. Amen.”

    With love,
    Lauren Quinones

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  50. This is such hard news to hear, and honestly I am not sure of what to say at a time such as this. I suppose the simple truth that Patrick is loved and for by many and he will be missed, even by those of us who have not seen him in years. I am so thankful that my path and his crossed at JMU! (Sarah, friend from JMU)

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  51. Praying much for you all, +Julian and Brenda

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  52. Praying for peace, comfort, love and strength. May God bless you and keep you all of your days.

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  53. God Bless you three. You will be a single parent, but Cecilia will NEVER be without her father!! How blessed Patrick is that you have the strength and courage to stay so attentive and loving to him through this and to make the difficult decisions that are best for him. Not every woman could do that. I don't know why this is happening, but from reading these posts I can tell that your husband is blessed with love and support - and so are you.

    May Patrick travel well. May he pass comfortably surrounded by those who love him. May you and Cecilia always feel his presence. God be with you and comfort you.

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  54. Praying for you all. Just now I'm remembering some great conversations I had with Patrick on a trail in the NC mountains a couple of years ago. I'll always be grateful for that time.

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  55. Julie - your honesty is so brave and your wisdom so deep. We're mourning with you and celebrating Patrick with you ... our two toddler/preschool girls know Cici by name (we've never met, I'm an old college friend of Patrick's), and they pray for her. May our Lord be evident to you in meaningful ways to you at this time.

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  56. I found your blog via the Building Cathedrals blog. I don't know you personally, but just wanted to let you know that I am keeping you all in my daily prayers.

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  57. Julie - I don't know you personally but I was Patrick's recruiter at Accenture and hired him last April 2011. He was a joy to work with and I was so glad he decided to join Accenture.

    I am so sorry to hear this news about Patrick and want you to know my prayers are with you, Patrick and Cecilia. God's hand will give you support and strength that you and Cecilia need as well as peace for Patrick. Please let Patrick know I am thinking about him and praying for you all!! Your bravery and open communication with us all is commendable. God Bless! Carrie Burns

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  58. You all in my prayers. God bless you all. God bless you Patrick.

    Kamal Faour

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  59. I have been following your story. It breaks my heart. I lost my husband almost a year ago, and so I know your thoughts about being a single parent. There is no greater bond than a husband and a wife. It's special and wonderful. I miss my husband every second of every day. Know my thoughts and prayers are with you and your beautiful baby girl. May God give you strength and comfort in the days ahead. Tell him over and over again how much you love him. I wish I could do that even just one more time! God Bless you and your family!

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  60. Julie, May God continue to be with you and your family. My prayers are with you. Andy Musser

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  61. i am sure you have had many a sleepless night along these last months. God has woken me up to pray for you more times that i can count. this night has been longer than most. i pray desperately that God's hand is upon you tonight, that you are somehow resting in peace and that you wake up able to face this day ahead. your faith has astounded me. i will keep praying continually for you as you walk through each day and all those around you to be able to minister to you in a real way.

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  62. Julie,
    I'm sending you a hug across cyberspace. I have been praying daily for you and Patrick. You are both in God's hands and He will strengthen you while He brings Patrick home.
    Carol Ohmstede

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  63. Julie,
    I don't know you but I am friends with Patrick's mom, Claire. Claire and I met years ago in Community Bible Study in Richmond, VA. I have been praying for you and for Patrick and all your family. My husband died in 1990 at age 36. I went through similar end of life decisions as you are experiencing. Our daughter had just turned 4. It was a horribly hard time that I would not want to repeat, but I must say, looking back, that God has used this in my life and the life of my daughter in ways I could never have imagined. I wondered too how I would ever do it as a single parent? And I longed to know what it would look like in 1 year, in 5 years, heck...even 1 month out? But God was and still is faithful to me as He will be to you. "Great is Thy Faithfulness" became my favorite hymn - so true - "morning by morning new mercies I see" and "all I have needed Thy hand hath provided"... He is able. While it doesn't make any sense yet we know His ways are higher than ours. The God who made Patrick loves him even more than his family and friends and will soon welcome Him home for eternity. Gayle (Tseng) Mellis

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  64. Julie, I am praying for your strength, courage, and peace. From all you've said, I hear what a heart-wrenching thing it was for the whole family to decide to take out the feeding tube. It sounds like you are being a deeply attentive listener to his body and his needs. I pray that you feel at peace about these hard decisions every time you look back on them. It is God who grants life, and God who chooses when to retrieve it, to bring us into an even fuller life with him. Praying for you and Ceci as you truly start the healing process in this next phase. Please be extra kind to yourself if you should have a dark period of doubt, or anger toward God - it's OK. (You know this already, I'm sure.) Just surround yourself with as much love as you can.

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  65. You are surrounded by the love of good friends, family and perfect strangers...like me. Thinking of you and your family often and hoping for Patricks passing to be comfortable and peaceful.

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  66. Dear Julie,
    I am Ranya Sweis's sister (Ranya was roommates with Amy at Wheaton. I have been following your blog and praying for strength for you and the family. It is not easy what you are going through, but it is obvious that the Lord is present with you. You continue to be in our prayers all the way from Jordan.
    Amal Sweis Haddadin

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  67. Praying for you, sweetie.

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  68. You are on my mind this morning. Praying for you.

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  69. Julie,

    I will continue to pray for you and Patrick in these final hours. Thank you much for your updates as they have been a dear connection for many of us who have not visited Patrick. It is my prayer that you are strengthened and comforted as you continue through this trial of caring for Patrick.

    Last night, my devotional was on James 1, where it says "Count it all joy my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing."

    This passage was coupled with the following quote from Dietrich Bonhoeffer:

    "Nothing can fill the gap when we are away from those we love,and it would be wrong to try and find anything. We must simply hold out and win through. That sounds very hard at first, but at the same time, it is a great consolation, since leaving the gap unfilled preserves the bonds between us. It is nonsense to say that God fills the gap. He does not fill it, but keeps it empty so that our communion with another maybe kept alive, even at the cost of pain." ~Dietrich Bonhoeffer

    I thought this might be worth sharing and I hope it is an encouragement. I pray that you continue to be surrounded with the love of God and the fellowship of many friends and family during these trying times.

    Patrick Bean

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  70. Julie: I am Matt Davis' mom and wanted you to know that you, Patrick and Cecilia are all in our prayers and thoughts. I have been following your blog and am so impressed with your insight and feelings. It has helped in many ways...........Again, our thoughts and prayers are with you!!!

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  71. Julie & Cecilia,

    While I don't know you personally, I know your sister, Amy, and am so thankful that she shared this story of hope & courage. I've been reading the blog and praying fervently for Patrick's healing, and as it seems that God had alternate plans for him to join Him sooner, I pray for the two of you as you find comfort in the memories you will cherish of Patrick's time with you, and a joyous reunion one day in heaven. The strength that you have shown in your blog posts have been inspiring & heartbreaking, but it is evident how much your faith has guided you through this process. Praying.

    In Him,
    Sharon Taylor

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  72. I have been praying for a miracle for you and your family. I can't imagine the depth of your pain. I hope you and your daughter find strength in faith and love. I also hope you know that you have touched the lives of people you have never met. I will continue to pray for you. I hope that, if Patrick does pass from this world too soon, you will find the comfort and solace to live happily once more.

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  73. Julie, we are thinking and praying for you and for God's presence to be felt so greatly by you now that you will be comforted in this most difficult time. So many folks from All Saints are praying for you now. I am so honored to have spent some quality time with Patrick on a Men's retreat a few years ago and had him be a blessing to me.

    Bob

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  74. Many people are praying for your family today...

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  75. Greg and Kathee FacchianoJanuary 27, 2012 at 8:47 PM

    Julie, you don't know us, but we've been following your family's story via Megan Medley and Sue Vernalis. We pray for all of you often, and though we cannot fathom the sadness you must feel, we do know that God has you in His hands. If we could take even an ounce of the pain you feel, we would. You all are so blessed to know God and your strength is inspiring, even if you feel you have none left. May God bless you and keep you, and may He grant you peace and strength in the days to come.

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  76. You don't know me, but I hope you know this: you are not alone and you are loved. Many prayers for whatever peace you can find at this time. I lift you, Patrick, Ceci, and all who know you and love you up to God in prayers.

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  77. May the weight of active death soon be lifted and the whisper of a body be restored in the hands of Jesus. May you be surrounded as you give him back by those who know you/ him best. TW

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  78. No words can express what I feel for your family. I want you to know that we have never met, but I have prayed for you all with my husband and children. God has given you time to cherish, but I can't imagine how you must feel...it wasn't enough...there were things still to do...time to spend...tears come to my eyes thinking of what you may be thinking...but in my life, and obviously in yours, we have learned that we have much for which to be grateful. Your marriage and gorgeous little girl are much more than people find in a lifetime of looking. What a thoughtful mommy you are...I have read your thoughts and blogs. Your heart may be heavy, Julie, but that is because it is so big! You have to know that you have made a difference to those who have read this. You have changed people's perspectives; made them grateful; shown true faith in such sorrow-you have been a light in a dark space for those who are hurting to follow...and an inspiration to those who have it all to thank God that they DO! Thank you for your faith, your hope, your love, sharing your heart. You are in our prayers. <3

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  79. Bless you, Julie. We just heard Tim's news. Know that my (and so many others') prayers are with you and for you now.

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Thanks for your prayers!