Thursday, March 13, 2008

...

This afternoon Joshua was having his bandages changed when his nurse looked up at me and said, "Susie, it's just burst." His encephalocele burst open, I think just from the bandages being removed slowly, even though they were drenched in saline. Within a few minutes his encephalocele was empty. That was 6 hours ago. We thought he would pass away quickly, but he's still here. He's had 3 sets of seizures, but doesn't seem to be in any pain. After about an hour he put his head right up, opened his eyes and looked around. I think it's the first time he discovered he could move his head, because it wasn't heavy anymore.

We are home with our family (my parents and brother came home quickly) and enjoying our time with him. Lots of cuddles, pictures, kisses, and tears. I don't know what will happen next.

Please pray for us while we walk through this.

What a miracle that we got more time... even in this. We thought he'd be gone within an hour.

189 comments:

  1. I know the time Joshua has left on this earth will be spent in love.
    Thinking of you....
    Jenny in Australia.....

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  2. I've been checking back constantly. Susie and Matt, please know that you are in my prayers. God bless you for the wonderful life you have given (and ARE giving) Joshua.

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  3. You and your family are in my thoughts. I am glad you have this time with him.

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  4. I am praying for you to have as much time with Joshua as possible and for him to be free of pain and knowing how much he is loved and will be forever...
    Love Dagmar

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  5. Praying for you and your family.

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  6. Thank you for sharing this piece of news, Susie. Joshua is truly amazing. I'm glad he gets a chance to experience some time without a heavy 'cele. I wonder if now, without the pressure on his optic nerve, if he can see. Great, strong boy to lift his head and open his eyes!

    May I ask more about the 'cele? You said it's empty, but I imagine that it wasn't only CF fluid but also brain tissue, which I imagine is still attached and didn't "empty" out. Is this correct?

    I wonder what his world is like? I know that humans can develop other senses to compensate for the ones we might have less of. The brain is such a mystery. Who knows if the way Joshua's is put together if he has skills and senses we can't even begin to imagine. Since we don't know, it's particularly wonderful that Joshua's life is not being spent in a hospital hooked up to machines and needles and wires. You are giving Joshua a chance to live a life.

    I'm glad he seems comfortable. I'm glad you all have this time still. I can only imagine what it must have been like for you to realize his 'cele had burst. I hope you weren't too frightened. I imagine that the sudden release of pressure would act on the brain in a manner similar to a concussion, so seizers would be understandable.

    I look forward to seeing pictures of Joshua as you feel appropriate and are able to post. My prayers are with you always.

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  7. I'm so, so sorry. I had half started thinking that this wouldn't happen.

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  8. Oh Susie, my heart is aching for you all. Love, strength,and prayers to you.

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  9. *hugs* I will be thinking about you and praying that Joshua do not have any pain.

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  10. Dear Susie,
    Just want you to know that we are sending you our love and praying for you constantly. We are thinking of you all the time, and particularly little Joshua. Praying that he will be comfortable, and you will have strength, peace and serenity as you give him all your love and cuddles. With much love. XXX

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  11. Praying, praying, praying...

    We love you, Joshua.

    We love you, Susie, Matt, and Oceana.

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  12. Susie,

    I just woke up with Joshua on my mind. I logged on to see your post. My prayers are with you during this time.

    May God hold you in His arms as your day unfolds.

    In Christian Love
    Sonja/Florida

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  13. I have never posted a comment before but have been following your journey since before Joshua was born. When I just read this entry, I had to say something, anything, though I am empty of words that might just possibly touch on how stunning and incredible I think you and your family are -- moved to tears at where this moment finds you. All I can say, Susie, is you and your family are being sent great, hard thoughts of comfort from Brooklyn, New York. I wish you all peace and strength and please know Joshua has touched me deeply. I have no doubt I will think about him through out the rest of my life. Please know that he truly has created that legacy.

    Sending much love and prayers to you and your family.

    Susan

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  14. From my family to your family, we are thinking of you.

    I am glad you have your family with you enjoying your precious time with Joshua.

    Take care

    Nicole( Melb, Australia)

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  15. Oh, Susie, I am so very, very sorry. What a gift your sweet Joshua definitely is! What a blessing that you, even now, can see your time with him as a miracle. It truly is. Praying, praying, praying for your family, for peace for all of you. Much, much love from Minnesota as you walk through this time as a family.

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  16. Just wanted you to know that at 5 a.m., Friday, someone in the US is praying for you.

    May the Lord uphold you with His mighty hand as you face what today may hold.

    Kimberly
    USA

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  17. oh susie, i just got covered in chills. I know it doesn't feel like much but you guys will be in our thoughts and prayers more than ever<3

    stay strong girl and give him a kiss from all your 27000 blog fans.

    Mary

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  18. Oh Susie, I'm crying and praying for you all.....

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  19. Dear Lord.
    Please hold this family in the palm of your hand.

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  20. Lifting you and your precious family up in prayer....

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  21. Weeks ago I've found your blog.. Since than I regularly come to check up on your family and Joshua. I'm very sorry that I'm reading this post – I’m sorry Joshua's ecephalocele has burst.
    I have four kids and I don't want ever to feel what you must be feeling right now, but I could only hope I would be courageous mother like you have been to Joshua. My thoughts are with you, your daughter, husband and with little angel Joshua. He is such a laky guy having you for his mother.
    Dear Joshua, have a peaceful journey to forever ness. Dear Susie enjoy this extra time that Joshua gave you after the burst, after all we all should do that in our families ‘cos no one can never really know which hour is that last hour that everyone of us is eventually facing..

    I've learnt a lot from your story, thank you!
    Thank you Susie, thank you Joshua.

    Love, Ana from Croatia, Europe.

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  22. Oh Suzie, I am certainly praying for you...even when you are prepared for something like this, you are never really prepared. I pray that he is without any pain and continues to only know the love of your family. My heart is breaking for you, but rejoicing to know that he will be with our Lord.

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  23. Praying, praying, and more praying. When my Grampa passed away last month, I was reminded of the words to an old chorus:

    God sent His son, they called Him, Jesus;
    He came to love, heal and forgive;
    He lived and died to buy my pardon,
    An empty grave is there to prove my Savior lives!

    Chorus
    Because He lives, I can face tomorrow,
    Because He lives, all fear is gone;
    Because I know He holds the future,
    And life is worth the living,
    Just because He lives!
    How sweet to hold a newborn baby,
    And feel the pride and joy he gives;
    But greater still the calm assurance:
    This child can face uncertain days because He Lives!


    Chorus
    Because He lives, I can face tomorrow,
    Because He lives, all fear is gone;
    Because I know He holds the future,
    And life is worth the living,
    Just because He lives!
    And then one day, I'll cross the river,
    I'll fight life's final war with pain;
    And then, as death gives way to vict'ry,
    I'll see the lights of glory and I'll know He lives!

    GOD BLESS YOU from Alberta, Canada.

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  24. Oh Susie,

    There are no words - We are praying.

    Tarah

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  25. I pray God gives you peace during this time, and that there is comfort for Joshua. May He bless you all.

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  26. Praying! No other words than that...just praying!

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  27. susie,
    I dreaded the day I opened up your post to read this. You all are in my prayers, and will be all day. What a miracle that even in this event you have more time with him. May God comfort you, matt,oce, and joshua. I pray that in these hours Joshua will not be in any pain and that you all will ba able to spend as much time with him as God allows. And when the time comes that he goes to Be in the arms of Jesus that you rememebr it will not be the last time you hold your baby boy, and also remember that it will be at that time he no longer be in any pain of have to suffer at all he will be made new. But he will always rememebr being held by his mother and the love that you showed to him everyday, the sacrifices you made and every prayer you prayed.

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  28. I cant even imagine the pain you are experiencing but I my heart is broken for you and your family. Joshua is an amazing little guy and he will never be forgotten by me and my family. You will be constantly in my prayers.

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  29. I pray for God to give you HIS perfect peace and comfort. That will be the strength you will need.

    Lots of Love,

    Debbie

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  30. Oh Susie.

    I'm praying. I am also rejoicing that he is still with you. May these moments be the sweetest you've ever experienced.

    -Andrea

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  31. My heart is so moved for you. I will be praying for all of you, all day, a ton, today.

    Angela in central Ohio

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  32. you don't know me, a friend (Gen) of mine on Livejournal asked me to keep you all in prayer. I just wanted you to know I would be praying for you today.

    - Tara (marliah on livejournal)

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  33. Oh sweetheart. I am thinking of you and praying for strength and courage and grace and peace. For all of you. Shower him with kisses from all of the people all over the world who are with him right now.

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  34. I am so sorry that you and your family are having to go through this trial, yet so thankful that you are getting this special time with Joshua. I pray that God will hold you and your family in the palm of His hand and give you the comfort that only He is able to give. My prayers and thoughts are with you.

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  35. Praying for you and weeping with you as you pass through this valley of the shadow of death. Praising God that you've been given as much time with your precious miracle as you have. Peace be with you ...

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  36. Praying......

    Karen in TN

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  37. I am so sorry to hear this, and I am praying for Joshua and for you.

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  38. I read your last entry with a lump in my throat. Joshua's life has really touched me. The words of Psalm 23 have been running through my head all morning - 'even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.'

    I am praying for all of you right now, and for beautiful Joshua as he goes through this final journey.

    God bless

    Megan

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  39. Praying...as i have been though I've never left a comment before. Please know that your faith and your precious miracle baby have touched a life and taught me even more about my faith and following our Lord.

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  40. I am fervantly praying for your family today that God's peace will surround you! Suzie, you are a wonderful mom and Jesus placed Joshua in just the right family! I know it's hard to think about, but this is all part of HIS plan...I don't even know you, but God placed you on my mind as I was up with sick kids during the night to pray for you, and now I know why!

    Debby

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  41. Oh Susie,

    I will be praying and praying that your time with Joshua is blessed and the most precious time ever. My heart is with all of you and hurting with you. Asking God to cover you with His peace that passes all understanding as you go through the hours ahead. May He give you the perfect amount of time to love Joshua until you place Him in Jesus' arms. You are loved by me and I had been hoping this time would not come and I am so sorry.
    You have my heart, all 4 of you.

    Love and Blessings and Prayers,
    Laurie in Ca.

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  42. My thoughts and prayers are with you and your family. xoxo

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  43. I'm praying for your family and Joshua.

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  44. My heart jumped in my chest when I read your words this morning.

    I am praising God that you get these hours, minutes, and seconds to say good-bye to your sweet boy. Every ounce of time is precious and I know that he is showered in love right now.

    Please know that I am praying for your whole family from my little town in Kansas.

    What a miracle Joshua is!

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  45. I have said many prayers for your sweet Joshua and your entire family. May you feel God's arms around you more than ever during this time. You are an amazing Mommy and I pray that God gives you the strength you need each hour of the day.
    God Bless You,
    Debra
    www.geocities.com/debgabehart

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  46. This post just breaks my heart... I'm glad he's hanging out, but really sad to hear he might not be with you for too long anymore.

    Tons of prayers coming your way!
    God has his arms open for Joshua, and He will come in your lives to heal your hearts...in time...

    Kim

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  47. Oh Susie! You and Joshua, and your family are in my prayers. Praise God that he is still with you right now, and doesn't seem to be suffering.

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  48. I'm so sorry to hear this. You guys are in my prayers.

    Melissa from NY

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  49. Lots of prayers coming your way, Susie, though they are pretty wordless right now. I'm praying for strength for you all, and peace, and no pain for Joshua, but beyond that, I don't know what to ask for. God bless you all...

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  50. I'm praying for your precious family this morning! God is so good & He is with you especially in this valley.
    Love,
    Emily

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  51. I don't know you, but just wanted to let you know that I am praying for your entire family and especially precious baby Joshua. God has used him to touch so many lives. He is an amazing little boy!

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  52. I am praying for little Joshua and your whole family. (((hugs))) God is watching over Joshua during this time of struggle.

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  53. Our prayers are with you. I pray the Holy Spirit, our comforter, will surround you with His presence, comfort, peace and love.

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  54. Susie, I don't know what to say but I will be praying for you extra hard today. Thank you for keeping us updated- while I may not know you or Joshua personally, you have touched my lives in so many ways. I think of you often and I love your family as though I know you. My thoughts and prayers are with you.

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  55. Susie & Matt,
    I was up last night and I felt to pray for Joshua, so I have been praying throughout the night (Wed. night here)I am praying for you guys, He is a fighter! I love you guys...keep us posted.

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  56. I don't know what to say right now. I am so very sorry. I just said a prayer for all of you. I pray that Joshua is not in any pain. I pray that you and Matt can have the strength to get through these hard times. I know you do not know what will happen next but just know that everyone is praying for you and baby Joshua is so loved. I guess that's all I can say right now. I am so very sorry Susie. (hugs)

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  57. Thinking of you all, especially sweet Joshua.

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  58. Praying for you...

    Annmarie
    North Carolina

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  59. For those of us who have been following your story, it has been such a blessing to watch your lives as you care for Joshua and "live in the moment", that you have been able to bless God and accept his will for all of your lives. We are praying hard as you enjoy this time together, that you will be full of peace and the comfort that only the Holy Spirit can bring.

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  60. Susie,
    You and your sweet family are in my constant thoughts and prayers. Joshua is a beautiful boy. Praise God for the miracle you have been given.

    Sending you love from Mississippi

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  61. Susie,
    You and your sweet family are in my constant thoughts and prayers. Joshua is a beautiful boy. Praise God for the miracle you have been given.

    Sending you love from Mississippi

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  62. Susie,
    You and your sweet family are in my constant thoughts and prayers. Joshua is a beautiful boy. Praise God for the miracle you have been given.

    Sending you love from Mississippi

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  63. I am so sorry. I don't have the words to say, but that my heart aches for your family. My 5th child was born in December with hydrocephalus and an encephalocele, but I can't say I know what you're going through. Our outcome has been much different. A friend shared your blog with me this morning. I had been feeling a bit grumpy and down because my Elijah is very touchy and cries a lot. I had little sleep last night and was feeling stress from all I need to do. Then I read your story. Thank you for reminding me how very precious every minute is. Joshua is so very lucky to have a family like yours. I am praying for your family and hope that God will continue to give you all strength and peace.

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  64. Susie, Matt, Oceana and Joshua,

    We are praying for you....that whatever God's will is for Joshua that He give you all the strength to get through it.

    With much love and prayer,
    Sherri

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  65. We are praying so much for all of you.

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  66. I have folllowed your story and I need to thank you. I've wanted to tell you this for a long time but didnt know how it would sound but here it goes. As sad as the situation is, your little boy is a miracle. He has touched me and affected my life in great ways. I dont know him or you or your family but you all have brought faith back into my life and forced me to be grateful for what I have (something thats hard for me) I thank you, I thank god for Joshua. I am in tears thinking about it. Like I said I have followed your blog and I feel like I know you. I wish I could give you a hug! One thing I want to tell you (you may already know) is that you must remember how lucky Joshua was to you have you and your family. Despite how short his life will be he still had all the love and care every baby deserves. That is thanks to you! You have done something amazing, something not many people can do. I bet our father is proud of you!

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  67. My heart is heavy and we are praying for your family! Know that when he goes, he will be in his fathers arms! Huggs and love from Columbus, OH
    Ashley

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  68. My heart is heavy and we are praying for your family! Know that when he goes, he will be in his fathers arms! Huggs and love from Columbus, OH
    Ashley

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  69. My heart is heavy and we are praying for your family! Know that when he goes, he will be in his fathers arms! Huggs and love from Columbus, OH
    Ashley

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  70. You and the family are in my thoughts and prayers. Joshua has touched more people in his short life than most people will ever touch in their lifetime. He is such a fighter and a teacher. What an amazing little guy!!!!!!

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  71. Oh Susie I am so sorry. This post brought me to tears. I saw it over an hour ago but Blogger wouldn't let me post a comment. I am praying for you and your family during this difficult time.

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  72. Oh Susie I am so sorry. This post brought me to tears. I saw it over an hour ago but Blogger wouldn't let me post a comment. I am praying for you and your family during this difficult time.

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  73. You don't know me but I have been reading your blog for about a week (usually with tears in my eyes--especially right now). I just want you to know that I am praying for you and your family. The faith and love that you are showing on a daily basis is a beautiful testimony to God's love. Thank you for sharing the story of your precious baby.

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  74. Susie, i really don't know what to say....but i hope that whatever happens that Joshua is not in pain.

    Will continue praying for you....God bless!

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  75. Know that the awesome God we serve is holding you and your family in the palm of his hand at this very moment. You are all in my prayers.

    Lovingly,
    Beth in Michigan

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  76. No words...just know love & prayers. mom Dietrich

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  77. Lots of prayers for you and your family from Marietta, GA!

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  78. i first read this early this morning. your family has been on my heart all day, and i continue to pray for peace and comfort as you spend time with your beautiful son.

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  79. Oh Susie! My heart is breaking for you. Praying my heart out for you, Matt, Oceana & your families. May you find some comfort in those that you love right now. Hugs!

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  80. What a miracle indeed. What a blessing from God that you have had so much unexpected time with Joshua. Every child is such a gift from God to his family, but Joshua, he has been a blessing to so many more families and that is a miracle too. My heart is breaking for you. Sam family, you are in my prayers. May God give you comfort and carry your burden during this time.

    In Christ,
    Sonya (Aurora,IL)

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  81. We are praying for you all!

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  82. Hi,
    I haven't posted before but I read your blog every day. I couldn't help but cry when I read your last posting.
    May God bless you during this time, my thoughts and prayers are with you and your family and baby Joshua as you go through the next little while.
    Joshua is such an amazing little boy, such a strong spirit. He will be missed very much.
    God Bless you and give you strength and peace and love.

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  83. Praying for you from Texas.

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  84. Hope has not been lost.
    "...as I was with Moses, so I will be with thee: I will not fail thee, nor forsake thee. Be strong and of a good courage: for unto this people shalt thou divide for an inheritance the land, which I sware unto their fathers to give them"
    Joshua 1:5-6

    "For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.
    "Then you will call upon me and come and pray to me, and I will listen to you.
    "You will seek me and find me when you seek me with all your heart."
    Jeremiah 29:11-13

    I have been reading your blog since Joshua was 16 days old. I am amazed daily as I see that he is coming so far. He and your whole family are continually in my thoughts and prayers. My sister from OK City, my husband and myself were so excited yesterday when I saw your post about the tooth. I thought, "Well now, that must be why he wasn't feeling well..."
    God has plans for your Joshua. He has a future for him. He knit him together inside of you. This is not a problem for Him. He made no mistake. He will show himself strong where you are weakest.
    "Watch, stand fast in the faith, be brave, be strong.
    "Let all that you do be done with love."
    1 Corinthians 16:13-14
    I know I haven't posted a comment before, but I think God wanted me to encourage you.

    Much love and prayers(lots and lots!)
    -Deborah Powell
    Atoka, Oklahoma

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  85. YOu and your family are in our prayers!!

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  86. I have found your blog via a link elsewhere. Reading through just a few of your posts I cannot imagine the emotions that you are feeling, especially having read today's post - my thoughts and prayers are with you.

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  87. A friend of mine on LiveJournal told me about your plight with Joshua, and I just wanted to pop by and tell you that you WILL survive this, although it's the hardest thing you can ever do. I lost my firstborn child, Jacob, in 2004. He lived for only 5 days after being born 12 weeks premature. His sutures had prematurely fused in 3 places in his head, and, like blessed Joshua, he just wasn't able to overcome such dire straits.

    I'm praying for you and your family. I'm so glad you are able to share him with us through your words and pictures, and I know that God will take care of him soon, as will my Jacob, until it's our time to go.

    ((Hugs))

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  88. praying, praying, praying for you right now.

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  89. I just found your blog from another blog and have read from begininng to end. I am praying for you all and for Joshua. May God hold you in the palm of His hand.

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  90. You're right, what a miracle he is! I'll be thinking about you and praying! Please give Joshua a hug for me.

    Sarah

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  91. I have been glued to my chair praying for your family. I am sorry you are going through this rough time, but I am thankful that you were blessed with the time that you had with your precious baby. Your family has truely touched my heart. Praying without ceasing for your comfort at this time.

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  92. You are definitely "strong and courageous, as your blog is aptly titled, as is baby Joshua.

    God Bless you all.

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  93. Letter to Mom
    by Joy Curnutt

    Mom, please don’t feel guilty
    It was just my time to go.
    I see you are still feeling sad,
    And the tears just seem to flow.

    We all come to earth for our lifetime,
    And for some it’s not many years
    I don’t want you to keep crying
    You are shedding so many tears.

    I haven’t really left you
    Even though it may seem so.
    I have just gone to my heavenly home,
    And I’m closer to you than you know.

    Just believe that when you say my name
    I’m standing next to you,
    I know you long to see me,
    But there’s nothing I can do.

    But I’ll still send you messages
    And hope you understand,
    That when your time comes to “cross over,”
    I’ll be there to take your hand.

    Copyright © by Joy Curnutt. All rights reserved.

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  94. Susie...(Cindy in California) our prayers are with you. xxoo

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  95. We are praying for you in Austin, TX!

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  96. Precious, precious boy. You have touched me with your strength.

    ~hugs to all~

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  97. I just came across your blog...I will be praying for your entire family
    God Bless you all

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  98. Praying for sweet Joshua all the way from BC, Canada:)

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  99. (((((((((SUSIE & FAMILY)))))))

    God be with you.

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  100. My friend on LJ posted a link to your blog. I wanted you to know I'm praying for you today and for your family. God bless you!!

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  101. as i do every single day, with bated breath, i opened the blog for my daily reading of joshua's journey. i don't even know you and i feel this intense amount of pain reading today's post - my heart goes out to you and your family.

    thank you so much for sharing everything you have been going through and for sharing joshua's life with us [me].

    prayers and hugs from texas.
    amy (babyfit nov 05)

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  102. Dear Susie and Matt,

    I am praying for you this morning here in Ca. asking God to watch over you and meet your every need. Asking Him to hold your hearts close to His at this incredibly difficult time. I am so thankful you have your families there with you. May He be your strength today and the days ahead. You are loved here and have my heart.
    Joshua is such a blessing and a true miracle who has touched my heart.

    Love and Prayers, Laurie in Ca.

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  103. My heart is with you and your family.

    Many prayers and much love,
    Rebecca

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  104. My thoughts and prayers are with you all.

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  105. praying for you and you family in this difficult time. May the Lord Hold you all close.

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  106. Praying for you today!
    Amy
    http://moorefam7.terapad.com

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  107. I'm so sorry. Sending you lots of prayer, love and hugs from your brothers and sisters in Christ in Trinidad.

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  108. You are in my thoughts and prayers!!

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  109. Im so sorry , with that though I am also so happy for you that you are given time that again you thought you would not have. Im praying for your family, praying for Joshua. Spend as much time holding that beautiful boy as you can and my thoughts will be with you all today in this tough time.
    Elisha Canada

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  110. praying...

    moriah from PA

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  111. *hug* Have been reading about your family for quite a while. It makes me very very sad that he most likley does not have much longer, but he sounds comfortable and you are all there with him. Better than a cold operating room, right? Your in our thoughs and prayers.

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  112. Praying for you here in Canada...
    sandie

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  113. May God be with you and your family during this heartbreaking time.
    Isaiah 58:9
    "Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I."

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  114. Susie,
    I have followed your story and am praying for your dear, sweet family...

    May God be forever the lifter of your head. Ps 3:3

    Blessing to you.

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  115. Nothing anyone can say will be sufficient, I know that. Just know that I have been praying for your family. I thought about Joshua last night, and i guess this was why. Your family has become a part of my life, and I will continue to pray for all of you.

    (((hugs)))

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  116. Hi Susie,
    I'm a stranger to you but have been following Joshua's life through your blog. You guys have given Joshua the most beautiful life imagineable and everyday when I check in I'm amazed at the size of your heart and your incredible strength and wisdom. Good luck to you and your family and I'll be thinking and praying for you today.

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  117. You and your family are in my thoughts. Joshua is such a fighter. I can't seem to find the words to express anything.
    But Joshua is such a beautiful soul that he has touched everyone from family to stangers who read this blog.

    Joanna in Ca.

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  118. Susie & Matt: I have no words. God Bless you all. We are all thinking about you and praying.
    Jan from Texas

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  119. Susie,
    I am praying for you and your family. Little Joshua is the strongest, bravest and most inspiring baby I have ever experienced or met (even if it was only through your blog). God has worked so many miracles through Joshua and I just want you to know we are here for you and your family. His life will continue to impact hundreds and hundreds of people for years to come.

    God bless,
    Amy

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  120. Please update us!! I have been praying for Joshus all morning.

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  121. I am so sad, I feel lost like i dont know what to say! God has truely blessed us all with this wonderful look at his miricle he is preforming through Joshua, thanks for sharing him with us! Love and paryers, Marisa in Alabama

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  122. Tricia from VirginiaMarch 13, 2008 at 12:43 PM

    Thank you for posting. I have and will continue to pray for all of you. You are an inspirational mother! Thanks for sharing this time in your lives. God is good and will be with you every step of the way.

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  123. I am so sorry. I am praying for you and your family.

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  124. I have never posted here, but I have kept up with your reports. I am so sad to hear of your news. I know from your previous posts about your beliefs in God, that he will help you through this part of your journey as well. I share your tears. I am glad that you were able to spend some precious time with Joshua here on earth. You will spend eternity with him in heaven with God later. I am praying for you all.

    Debbie Lionberger
    Illinois, USA

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  125. Hi Susie, I read everyday but have never commented. I am from the May 07 mommmies on Babyfit. I have kept up with your blog and prayed right along with y'all. Just wanted to send my thoughts and prayers. What a miracle he is! You are amazing!

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  126. My heart is breaking for you and your family.

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  127. Sending many, many prayers and much love your way!!

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  128. Elijah's Mommy & Daddy are praying for the Lords strength to hold you during these moments. There are no words that can heal what you are feeling but WE DO KNOW ONE THING THAT: "THE HOLY SPIRIT IS INTERCEDING ON YOUR BEHALF CONSTANTLY AND THAT HE PROMISED NEVER TO LEAVE YOU"
    WE PRAY THAT THE PEACE THAT SURPASSES ALL UNDERSTANDING WILL GUARD YOUR HEARTS!!!
    ALL OUR LOVE
    THE DOUGLAS FAMILY

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  129. Praying, praying, praying, praying! No words can be said but the Spirit will intercede to offer up perfect words of prayers to storm the heavens.

    I'm crying with you, my friend!
    ~Tamara

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  130. Oh Father God,

    I ask you to fill this home with your presence. Let Joshua's face be the very face of God to this family in these last moments. Let the presence of your spirit and the angels awaiting sweet Joshua be nearly tangible as these hearts break in anticipation of letting go. Lord, we do not understand your ways. But we are thankful for your mercy and your grace. We praise you, Lord, for letting this miracle boy live so long. Your power is magnified through His life and I praise you for that. Be the very breath in this family's lungs as they look for you and try their best to breathe this boy in now. You are enough for us. Your joy is our strength. Our weakness is the dwelling place of your mighty strength. Fill them now, Lord. Be gentle to Joshua and whisper your promises into his ears until he arrives home, safe in your arms. We praise you, Lord, for every child and every moment shared with them. We love you, Lord. Come now.

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  131. I just want to say that you are a wonderful mom and I will pray for you and your family continually today and days to come. I have been quiet about posting until now, I apologize. I have lost 3 children, one at 5 days old, one at 1 1/2 mo old and one at 3mo old. So please know that I have heavy eyes for you and Joshua is here for a purpose. I know in my situation, I didn't know it at the time how much purpose my babies had until later on, but God does show you.

    With our my love!

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  132. This is my first time visiting your blog and I know it was not coincidental. Please know I am interceding heavily for you in this time.
    -Kaylyn

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  133. I'm not a praying person, but I read your story today and cried my eyes out. How brave you are to tell the world your story, I would be so numb with grief and (dare I say it?) anger.

    This will sound somewhat hypocritical, but I will pray for your family and for the gift you have been given.

    I send you strength and much love from the state of Tennessee.

    Thank you for inspiring me today and the days to come.

    Yours Truly,

    M. Everett
    Maryville, TN.

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  134. Our thoughts and prayers are with you and your family during this time.
    He is a remarkable young man!

    --Pauline

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  135. Oh I am so sorry! Thank you so much for sharing your beautiful baby with the world. You are a true example of what love is really about. My thoughts are with you at this time. I am waiting with baited breath to see if you will continue to get more precious, miracle time with your sweet Joshua.

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  136. Praying for you and your family.......
    -Heidi in Ct

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  137. My heart is aching for you. Thoughts and prayers are with your whole family.

    Lots of love and hugs,
    UNC NICU RN

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  138. Oh, Susie. You guys will be in my constant prayers today. May God grant you the peace and grace you need to walk this difficult road.

    With tears,

    Ginger

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  139. Ohhh sweetheart I am so sorry! I will be praying for you guys... praying that Joshua is not in any pain, that he passes quickly if that is what's meant to be, and that all of you can find some peace in this time.

    ***BIG HUGS***

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  140. My thoughts and prayers are with you all. My heart is aching right now. I tried posting a comment a few minutes ago, but don't know if it worked. You may get two from me!

    Lots of love and hugs,
    UNC NICU RN

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  141. I follow your family's story everyday. I am praying for you in Indianapolis, IN that you will have so much quality time with Joshua in the next hours, days, weeks- God's ultimate Time! Thank you for your living testimony and for keeping us updated on a little boy many of us have grown to love!
    Codi Strong

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  142. we all are praying for you and your family

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  143. I've been following your blog for quite some bit now, and thought it would finally be time to comment.

    I admire you and your family's strength and courage through this experience. And I think Joshua is a very handsome little man.

    To have all of this time with him is a true blessing, and I hope you enjoy every minute of it. He and your family are on our thoughts constantly, and we are so blessed that you have shared his life with everyone.

    The World is very lucky to have a special guy like Joshua, and I thank you for sharing him with us all.

    Give him a kiss for me, and tell him that we all love him very much. We are all here for you and will walk through this together... no matter what the outcome is.

    Jessica Thomas (Ontario, Canada)

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  144. Our Prayers are with you. Miranda Webster Farmington Hills MI, USA.

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  145. Susie, I check every morning to see how your family is doing. You have all been in my thoughts and prayers. This morning I must admit it am shocked and without words. I first of all want to say that I think that you are an amazing mother, woman, wife and christian. I love your spunk that you have reveiled. You love your son so much. I just want to say you are a amazing person. My prayers are with joshua and all of you. Enjoy every minute. In Christian Love, Julie H. From Oregon

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  146. Lifting you up to the Lord in prayer today. May He give you the strength to face the difficult times ahead. God Bless you all - Lorraine, Oxfordshire, UK

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  147. I'm constantly praying for your family. May the hand of the Lord carry you through. Joshua is beautiful, you're so lucky to have him.

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  148. Just wanted your to know that your family is in our hearts & thoughts today.....so many today are whispering prayers for you. God Bless You!!!!

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  149. Hi Susie, Matt, Oceana, and little Joshua,

    I read your story on Courtney's blog and clicked over to your blog to read more.

    I know there is not much I can say, but I want to let you know that I am praying for Joshua and for all of you. May God touch this little boy's life with a miracle and may He give you hope and strength through this time.

    It is amazing to read all the milestones Joshua has experienced already! Joshua is a beautiful boy!

    Praying for you!

    In Him Alone,
    Mirjam

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  150. I'm praying for you. Honestly, I don't know what you're going through, but my heart goes out to you and your family. God Bless You!

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  151. For each tick of the counter, thousands of prayers are lifting your precious family up at this delicate time.
    HUGS
    bree

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  152. "The Lord is my rock, my protection, my Savior; He is my shield and my saving strength..." (Psalm 18:2)
    Many are praying for you and His angels are surrounding you... May Joshua feel His pressences and rest upon the wings of the angels... sending angel hugs from Alaska

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  153. Susie and Family,

    I am praying for you guys to get through all of this. You are all SOOO strong. Joshua is going to be with the Almighty God in Heaven and in NO more pain. I'm am so sorry that you all have to go through this! What a blessing little Joshua has been. Your family has touched my heart.

    Kristin

    www.carepages.com Carepage: GavinCannon

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  154. May He Comfort You

    HE WALKS WITH US

    The road of life may take us
    where we do not care to go¬-
    Up rocky paths, down darkened trails,
    Our steps unsure and slow.

    But or dear Lord extends His hand
    To hold, to help, to guide us.
    We never have to feel alone,
    For He walks close beside us.

    May you find strength in God’s presence
    At this time, and my
    His love be your comfort.

    “….Thy rod and Thy staff they comfort me.”
    Psalm 23:4 KJV

    When my bed has been floating
    On the flood of my tears
    Seems as though my joy has disappeared
    Still I will not put my hope
    In what I feel or see
    I will cling to You
    And trust You’re holding me
    Lord I don’t know where I’m walking
    But I’ll take it day by day
    And I’ll hold Your hand
    And You will lead the way…

    We are all praying for you!

    Blessings & lots of love 

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  155. I am praying for you and your family right now! God hold you tight!

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  156. Susie your family is in my prayers.

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  157. I am praying for you and your family. I have been reading your blog daily and look forward to updates on your little guy. I admire your strength and love you all, even having never met you.

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  158. Oh my heart hurts for you. I'm praying constantly for you and for baby Joshua. He is such a solider.

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  159. S Gepfer called me after she read the blog. She told me that her morning devotional scripture was Joshua 1:9 "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." She reminded me that we are never alone.

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  160. praying for you and your family, may the Lord hold you close.

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  161. Oh Susie,

    My heart is just aching for you and your family. I am praising the Lord that He is continuing to give you more time, and I will keep you constantly uplifted in prayer today.

    Devin in Illinois

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  162. I am praying for your family & I pray that God gives you peace & wraps His healing arms around you all.
    Emily

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  163. Susie

    I don't often comment but read every day

    I don't have words that are suitable but I am wrapping you and Matt in prayer.

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  164. Dear Susie,

    I have been praying for sweet Joshua every day since he was born. What a miracle baby he is, living so much longer than doctors ever expected! I will especially be remembering your entire family as you are facing these difficult moments with Joshua. Thank you for being willing to share your journey with the blog world. You have had incredible strength each day as you have loved your precious little boy with all that you have. I know very well all that you must be feeling right now, as Tristan just passed away 45 days ago, but please know I am here in you ever need to talk.

    In Him, Yvette Hostetter
    www.tristanasher.blogspot.com

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  165. Susie - we've been praying for you all since we read your blog this morning. Praying that God's presence will be very real and tangible to you - praying that his comfort, strength and peace will overwhelm you. Just praying.

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  166. Ive been following your story for sometime now and never had the right words to say to you. Im so very sorry that things have made a turn for the worse but am so thankful that you were blessed with this much time with Joshua. Please know that you have so many people praying for you. I can just picture Gods loving arms wrapped around your family so tight now. I hope you can find some comfort in Him.

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  167. Oh please give him hugs and kisses from Gramma and Grampa! We love you!

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  168. Susie-

    I pray the Lord would comfort you with His unexplainable peace in this time.

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  169. Matt Susie and family,

    I know our grief doesn't pale in comparison to yours but please know we are covering you all in prayer. May God's presence be real in your home today!!!

    We love you!!!

    P. Roy, Pam & Family

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  170. Held song by Natalie Grant (written by Christa Wells)

    "Two months is too little.
    They let him go.
    They had no sudden healing.
    To think that providence would
    Take a child from his mother while she prays
    Is appalling.

    Who told us we'd be rescued?
    What has changed and why should we be saved from nightmares?
    We're asking why this happens
    To us who have died to live?
    It's unfair.

    Chorus:
    This is what it means to be held.
    How it feels when the sacred is torn from your life
    And you survive.
    This is what it is to be loved.
    And to know that the promise was
    When everything fell we'd be held.

    This hand is bitterness.
    'We want to taste it, let the hatred numb our sorrows.
    The wise hands opens slowly to lilies of the valley and tomorrow.

    (Chorus)

    Bridge:
    If hope is born of suffering.
    If this is only the beginning.
    Can we not wait for one hour watching for our Savior?

    (Chorus)

    You and your family is in my prayers. I know there are 1,000 of people touched by your son and his life.

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  171. Dear Susie and family,

    I have been reading your blog for over a month now and have marveled at how strong you have been. When I think about it I guess you have no choice, you do what you have to do and when it's your child , well what can I say...any mother would understand ...we'd walk through fire for our children. I'm praying for you today and have been every day that I've read your blog. You are truly a joyful person even in the midst of an un-joyful time. I have so loved seeing your pictures of your family and your wild sense of humor ....Dr. Suess, The Cat in the Hat???....Sometimes we have to laugh to keep from crying..You truly have brought me closer to the Lord with your attitude and demeanor. I wish at the age of 22 I had been half as mature as you. I'm more than twice your age and I've learned so much from your selfless love and spirit for life that you have for you and your family. God bless you and we all know he has already blessed Joshua by giving him you and your family to be born into.

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  172. Dear Susie and family,

    I have been reading your blog for over a month now and have marveled at how strong you have been. When I think about it I guess you have no choice, you do what you have to do and when it's your child , well what can I say...any mother would understand ...we'd walk through fire for our children. I'm praying for you today and have been every day that I've read your blog. You are truly a joyful person even in the midst of an un-joyful time. I have so loved seeing your pictures of your family and your wild sense of humor ....Dr. Suess, The Cat in the Hat???....Sometimes we have to laugh to keep from crying..You truly have brought me closer to the Lord with your attitude and demeanor. I wish at the age of 22 I had been half as mature as you. I'm more than twice your age and I've learned so much from your selfless love and spirit for life that you have for you and your family. God bless you and we all know he has already blessed Joshua by giving him you and your family to be born into.

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  173. Flooding you with prayers of strength and hope.

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  174. I never written before. But you have been in my prayers since I started reading about your journey. I have fallen in love with Joshua and your family. I'm praying now that God sends you extra angels to help you though this. God bless you.

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  175. holding your family in my thoughts.

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  176. My thoughts are with you and your precious family.
    alisa
    mother of two in CA

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  177. Susie,
    I am so grateful to you for sharing Joshua with us all, so we could pray for him, watch him grow, and contradict all the predictions. He is indeed fearfully and wonderfully made. We are praying still.
    love, connie

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  178. My thoughts and prayers have been with you all from the moment I started reading your blog. Thank you so much for sharing Joshua's story...what an incredible little boy. Your courage, strength and dedication are admirable.

    Sending you love, thoughts and prayers from Michigan.

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  179. According to Havalah's boyfriend's blog, Joshua has passed away. See dahvede.blogspot.com for details.

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  180. I never knew Joshua but he touched me to the core of my being I can't tell you how precious his life was to me. Thank you for telling Joshua's story. He touched so many lives in his 67 days. Thank you for sharing his story.

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