Friday, March 6, 2015

an update on Eleni

This morning while pumping I read through your comments on Eleni's Birth.  Thank-you, thank-you, thank-you for your loving thoughts and prayers.  I do feel surrounded and supported by my friends near and far.  I just wish I could bring you better news.  Most of all, I wish all this love could heal her.

NICU Eleni's arm

Yesterday we received results from Eleni's first MRI.  Tragically we were told that "her entire brain" 'suffered "severe" damage from oxygen deprivation.  They believe this was an acute event that happened sometime before her birth or possibly during.  She's been diagnosed with cerebral palsy, which means that they expect her brain will have trouble controlling her muscles.  Cerebral palsy is a spectrum condition, with low functioning and high functioning expressions. At this time we have no idea where she will fall.  Right now she still hasn't opened her eyes, which may be a muscular issue rather than that she is unconscious.  She also cannot suck or swallow.  On the upside, she is breathing now without any assistance and her other organs are well.

Brandon and I are truly experiencing a tidal wave of emotions.  The children seem to be managing well, though I'm sure they can't comprehend how much this may change our family.  Today I am taking a quiet hour or so to work on my clamshell quilt before heading into the hospital.  Spending some time with the colors will soothe my soul.


Wednesday morning I discovered Flowers for Eleni and Auction for Eleni, two support efforts led by some dear bloggy friends.  I wanted to share those links here in case you hadn't heard.  I've been finding flowers in my Instagram feed when friends tag me.  Such a sweet gesture.  Thanks from the bottom of my heart.

still in hope,

Rachel



150 comments:

  1. My aunt's (by marriage) older brother was born with cerebral palsy. The doctor's told the parents he wouldn't live to be older than 10 and that he would have to stay in a special home for disabled children. They told the doctors that they were wrong and they were taking him home. He was confined to a wheelchair his whole life, I believe. He learned to use a computer, and was extremely funny, loved and a joy to the entire family. He lived into his late 60s. I just thought you should hear a success story of cerebral palsy. Love, prayers and faith will get you so far, and know that I am praying for your entire family, especially Eleni.

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  2. Thank you for the update! I have been praying for you, Eleni, and your family. I will continue to do so whenever you come on my mind and heart.

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  3. Dear Rachel, I’ve been thinking of you and Eleni a lot over the past few days. I understand the rollercoaster of emotions you and Brandon are going through right now, as we have a grand nephew in the family who was born with cerebral palsy.Take care!

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  4. I've been praying for you all and will keep doing so! I'm also going to figure out how to make some hexagons so I can make some flowers for your sweet Eleni.

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  5. Thinking of you and your whole family.

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  6. Dear Rachel, your family is help up in prayer by so many. I work with a dear woman whose son (now in his 20's) has cerebral palsy {low functioning} and can I just encourage you that their's is a house filled with such peace. It is almost as if their dear son grounds them - clarifies what is truly important and what is fluff. When Jesus' time on this earth was finished and it was His appointed time to return to Heaven He encouraged his beloved disciples, "...and lo, I am with you always, even to the end of the age." Matthew 28:20. Jesus is with you, Rachel, and Brandon, and all of your family as you travel this path with Eleni.

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  7. I don't know you personally, but I as a fellow quilter and a mom to a new baby myself, I just wanted to drop by and leave a note of support and love. I hope you and your family can feel the love and the hugs being sent your way and that they can provide you some comfort through this extremely difficult time.

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  8. Thank you for you update. Prayer does wonderous things in time of need and hurt. I hope you find a little comfort and strength with each passing day. You keep quilting in spite of things. You are an inspiration to so many.

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  9. Thank you so much for your update. I am sending prayers to you as I quilt today. Each stitch will be a prayer for you, your family and especially Eleni. Blessings, Elli

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  10. Thank you so much for the update. Your daughter and your family have been on my mine a lot in the past few days. I've been praying when God brings you to mind. You don't know me, I'm just a fan of your blog. I will continue to pray. Thankfully, we serve a God of comfort. May He comfort you! And may Eleni be a mighty blessing to all who know her, and be blessed.

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  11. Thinking of you, Eleni, and your family. Hugs to everyone and an especially warm embrace for little Eleni.

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  12. Rachel, I wish I could reach out and give you a proper hug. I've been thinking about you and your family so often. Wishing you peace, strength and much love xx

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  13. First let me say I am sad to hear the news about Eleni. I wanted to share with you that I have a sister that also has Cerebral Palsy. I don't know where she falls on the spectrum , but I do remember the doctors telling my parents that she would never do this or that and what have you. She is now 47, living on her own in an apartment! She goes to a job that she loves in the spring through the summer at a baseball park. Her life has not been easy, and she lived at home with my folks until a year and a half ago. She is over the moon excited that she is able to be on her own (with some assistance). She took a trip recently with her caregiver to Las Vegas!! People with CP can live a good life too. You will take one day at a time and learn who Eleni is going to be. Hopefully she will exceed your expectations! I think my parents would be so proud of my sister if they were still alive! Please know that I am available if you ever want to talk. I have another sister that was born mentally retarded (my mom had measles) and is also experiencing some bipolar issues. I am no stranger to these things!! Keep your chin up, facing God and lean on your family and friends. Bless you and all you do for us in the quilting community too.

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  14. Prayers continue for healing, both physical & emotional for you and your family.

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  15. My Sister in Law had a similar experience last year with similar circumstances. While there have been many ups and downs for her, I can happily report that my niece is about to hit her first birthday and is beating the odds. My thoughts and prayers are with you and your family. One thought that brought me peace was that I know that my brother and sister in law are such loving parents and so capable that I knew God used them to bring such a special spirit here to earth. From what I have seen from you on your blog, you seem to be of that same caliber and were chosen to help Eleni here on her journey. Please know that my heart goes out to you and that my prayers are with you.

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  16. Still praying Rachel. I appreciate you taking the time to update us on Eleni. Much love and peace to you and your entire family,
    Rene'

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  17. You and your family are in my thoughts.

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  18. I only know you through your blog, but I wanted to just be another voice to tell you that I'm thinking of you and your sweet family. I have a son with Autism (he's 13) who is doing quite well, but I know as a parent that the hardest part of the journey ahead will be living with uncertainty. I hope your daughter continues to improve. Thank you for sharing your story with us.

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  19. I will keep you, your family and Eleni in my prayers.

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  20. Rachel, there are no words, only reaching out through the screen to hug you. I am sending you and your whole family many prayers for peace.

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  21. Thanks so much for sharing with us Rachel! I find myself thinking of you and your dear baby so often throughout the day. You and your family will continue to be in my thoughts and prayers...

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  22. Still praying for you and your whole family........

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  23. Rachel - I have been following your progress your whole pregnancy and I want to say first congratulations on the birth of Eleni! I know this will be a challenge in your family's life but I am certain Eleni will bring such joy and many blessing to you all! My prayers are with you - Camille

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  24. ... and the greatest of these is love. We have a special needs adult son - like so many we were told the things he would NOT be able to do. But he has done wonderful things including graduating from college with honors, living in his own apartment, and holding down a part time job. He does not drive - but truly, when it comes to the things that matter (love, compassion, faith, and hope), he has taught us SO much. Sending hugs and prayers - and no matter what happens, always listen to your heart.

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  25. Alles Gute für die kleine Eleni und für die Familie!
    Liebe Grüße Jacqueline

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  26. Sending you strength, courage, and love!

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  27. Peace and prayers for you all, Rachel.

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  28. So sorry to hear your news Rachel. I work with a wonderful man (in his 30s) who has cerebral palsy and he lives alone, holds down a very lucrative job as a project manager in a Fortune 100 technology company and has oodles of friends and fun adventures in his life. He has his challenges, but he meets them all head on. Wishing the best for you and your beautiful daughter and family.

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  29. My heart sank to hear the latest news about Eleni, but after reading many of the comments from your loving and caring followers, my heart was lifted again! There is such hope and inspiration in their stories! God gave sweet Eleni the best parents and family she could ask for, I believe that, and I'm sure she does! God be with you all!

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  30. Rachel,
    I am praying for you and your family, and especially little Eleni - God's peace is an anchor at times like these - may you experience the peace that passes all understanding - and may God give you the strength for the challenges ahead -

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  31. I am so happy to see a picture of Eleni's precious little body today! I know your mind is reeling from all the unexpected news and uncertainties. One thing is certain...God LOVES Eleni and your family SO.VERY.MUCH. Cling to Him. Take to Him whatever it is you're feeling...He can handle it. Eleni's story from the very beginning has been one of HOPE...her story continues.

    You're family has, and will continue to be in my prayers. I just know God will bless you abundantly with His grace with Eleni in this world. You have always been and will continue to be an inspiration to your readers.

    I'm so glad to see such sweet ways of reaching out in support of Eleni's Hope Story. I look forward to participating in the auction! Thank you to those women for making it possible to reach out and love Eleni in concrete ways.

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  32. Thank you for the update. Your family has been in my prayers. My youngest son spent time in NICCU and I am familiar with the routine. The waiting, the travel and the process you have to go through just to get admitted in to see your tiny one for precious little time. I understand your need for a quiet spell.

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  33. Thank you for sharing Eleni's picture and progress. You and your family are thought of often and many prayers are being said for you and them. God never allows hardships without giving enough grace to handle them. Trust Him and take one day at a time.

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  34. Oh Rachel, I am so, so sorry! I have been heartsick for you all week. Thanks for taking the time to update us. We will all continue to pray. For a miracle. For peace. For comfort.

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  35. Still holding you and Eleni in my prayers, Rachel. Thank you for keeping us updated, I have been thinking of you and Eleni frequently.

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  36. I can not even imagine what you are going through. So sorry Rachel. I still hope for happy end!

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  37. Praying and praying so hard for Eleni, you and your family. Thank you for sharing the news.

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  38. Rachel I have thought about your family often and I hope you are able to find peace and comfort.

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  39. I've been thinking so much of you and your family since I read your first blog post. I'm so sorry to hear of your tragic news but encouraged that she is breathing on her own and her other organs are good. I will continue to pray for healing for her- children so often exceed our expectations! Thank you for the picture of her- she looks so tiny and beautiful!

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  40. Dear Rachel, you and your family have been in my thoughts and prayers. Thank you for sharing an update. I'm glad that you're taking time to look after yourself too. Kia kaha my friend.

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  41. Sending so much love to you all - and holding so much hope in my heart for Eleni. xx Clare

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  42. I've been thinking you and your family so much this week. Will continue to pray for peace and strength for all of you.

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  43. My heart goes out to you. May Eleni grow to do remarkable things and may the heavenly angels surround and protect her each and every moment of her precious life. May you all have years of joy ahead of you. xo

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  44. Dear Rachel, I dont know what I should write. I hope and I will pray for better news, I am thinking of you and your family, I have three sons and could not imagine how do you feel. Zuzana

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  45. I know you would love to heal her, and that this is going to be a huge change. But I know how much this little girl is loved already, and that she couldn't have a better mama/family to come into, who will love her to pieces.

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  46. Sending lots of hugs and keeping you and your precious family in my prayers.

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  47. Dear Rachel
    I have dear friends who have been in similar circumstances. They told me they felt very blessed, God only picks very special people to raise such beautiful children. You know....she was right. They now have a beautiful adult son who so enriches their lives and those around them. Your path may be a little more windy but you will never walk it alone.

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  48. A new and different journey to the one anticipated but one which will overflow with love.

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  49. Another longtime reader, first time commenter. You have been in my thoughts and prayers daily since Eleni's birth. I know that your world has been shaken to its core, and that right now you cannot imagine how what feels like a bad dream will shape itself into a new reality. But I hope you can take comfort in knowing that over time it does, and that this shock will soften, that feeling in your stomach will go away. All you can do right now is breathe, and take this one day, one moment, at a time.

    My 2-year old daughter was diagnosed with cancer last May, and is still fighting. Life changes in the blink of an eye. It's also one of those things that, when it happens to you, makes you think that it can't be real, that these things happen to other families, but not to mine. We cope by finding joy in the small things and by taking life one day at a time. Quilting also soothes my soul. :)

    I will continue to pray for strength for you, your family, and your sweet little girl. May you find peace in the present moment and hope for the future.

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  50. My continued thoughts and prayers dear Rachel. Two of my babies spent the first few weeks of their life there in the hospital, so I know how scary it can be. Especially with the problems Eleni is having. I wish all our love and prayers could heal her right now. But as that is not so, I'm sending you and your family many prayers for strength.

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  51. Sending Eleni soothing powers of love and miracles

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  52. Oh Rachel, All I can do is weep for you. And reply the hundred emails that have come in asking to stitch for you.

    "Oh love that will not let me go, I hide my weary soul in thee."

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  53. HELLO, feel like I know you somewhat after reading your Blog for a time. On 2-27 I was happy for receiving the beautiful 'Color Theory' jelly roll from you.Today I'm not as happy as I learn of your little ones condition, but many are the prayers ascending for her very life and even beyond to a joyfilled life. Mine+my family's prayers for Eleni and for you and your family for grace and strength ♥ Blessings, Linda

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  54. Your blog updates are gifts for you and for us...I am doing that on my blog too as my dear husband has ALS...It is so therapeutic when you feel so hopeless and there is nothing one can do..I am.sending more quilty hugs your way as you weather this unbelievable storm. Life as we know it changing in a second. xxoo

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  55. Like so many others, I've been thinking of you often and patiently waiting for an update. I'm so sorry about the news. And yes, there is still hope!!! And you know there's a whole community of quilters keeping you in their thoughts!

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  56. Thanks for the update. Continuing to pray for Eleni.

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  57. Rachel, I am praying for Eleni, and for your family. Although I cannot imagine the emotions you must be experiencing, as the mom of a boy who was in the NICU for 5 weeks, I can definitely empathize with that aspect. I pray that she makes great improvements, and that your family is surrounded by love and support.

    Kelly @ My Quilt Infatuation

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  58. Rachel, I know all of these comments are about hope and love through sharing experiences and love. Mine is going to be the same. I also know it can be overwhelming, but it's done out of compassion and love for you and your family. When my 11yo was born he had a stroke and was/is missing 40% of the right half of his brain. He has many conditions, CP being one of them. He has overcome every prognosis the doctors gave him and is a complete and utter joy in my life. I remember one of the strongest things I felt at the time was that even though my son was alive (for which I am eternally grateful) it still felt like a death of sorts. The passing of hopes and dreams and expectations for your child, to be replaced by anxiety and the unknown. Let your close family and friends know how you feel. And please know that you and your family are in our prayers.

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  59. Rachel, two of my three children have mental disabilities. I recommend you take your time to go through the grieving process of not having a "typical" child. Afterwards, love on Eleni, learn from her and she will cause you to grow in ways you never thought possible.

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  60. Rachel... I have enjoyed your blog so much over the past year. Your post about Eleni's birth was heart wrenching. My sincerest prayers and wishes go to you and your family. She IS a gift from God, and she has already touched so many lives in such a profound way. My sister worked 25 years on a NICU and these precious little babies can beat some tremendous odds. I will pray for strength for you, your husband and Eleni. It appears that you have a prayer chain a nation wide. May our prayers lift you up during the hard times. Bless your family...

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  61. Thank you so much for the update. I will continue to pray for Eleni. I truly believe with God all things are possible.

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  62. Rachel, thank you for the update. My heart sank when I read the news but was lifted after reading the wonderful stories from your many friends. I continue to pray for Eleni's recovery and strength for you and your family.

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  63. My prayers are with little Eleni and the rest of you. Miracles happen every day. May Eleni be blessed with one. Hugs

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  64. May quilting give you a little piece of comfort as you go through this very emotional time.You and your family especially little Eleni are in my prayers.

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  65. My prayers, thoughts and love are with you!

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  66. Thank you so much for taking this time to update us, Rachel. Thoughts of you all fill my days.

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  67. I am so glad you were able to find the time to update Eleni's progress for everyone to see. I know I'm not alone when I say I've been heartsick waiting to hear how she is doing. That sounds like extremely positive news that she is breathing on her own. I'll keep hoping and praying for more good news!!!

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  68. I have a dear friend who has a son with CP. His early prognosis was very poor. He is still low functioning, and unable to communicate other than very basic things. But he is the sweetest boy, a ray of sunshine. I imagine Eleni will bring that same joy to your life in time.

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  69. You are in my thoughts with hope and love!

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  70. Rachel you and your family are in my prayers. You love and spirit will continue to blossom. You are the color and force.

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  71. You have been on my mind and in my heart and prayers so much since your last blog post, and you will continue to be. There are just no words to express what I want to say. My youngest child was born last summer seven weeks early because of severe growth restriction caused by placental issues. He was in the NICU for five weeks, and spending so much time there opened my eyes in a new way to the fragility of life, and to the myriad ways things can go wrong. I pray for grace and strength for you and your husband and children as you face the days ahead. And I pray for Eleni.

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  72. You and Eleni have stayed persistent on my heart and mind. I will continue to hope alongside in prayer for your sweet girl.

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  73. Weeping with you Rachel, and praying for comfort, rest, strength and a certainty that He holds your family in the palm of His hands xx

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  74. About 9 years ago, we adopted our daughter who will soon be 20. She has cerebral palsy. Hers is mild and a result from the umbilical cord being wrapped around her neck. When we got her she could not stand up straight, jump, throw, catch, etc. we worked with her a LOT and brought her to a chiropractor who practices the Gonstead technique. She can now do all of those things. She is developmentally disabled but a shining star in our family and has taken everyone by surprise. I hope your baby is as miraculous as our daughter has been. And brings you as much joy. Sending many blessings.

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  75. Please know that you are not alone. Difficult birth stories and journeys are doubly hard because we are programmed to believe that they always end with in a certain way and leaves us even more traumatized when we find ourselves on a road we had not planned (it can feel like EVERYONE else gets the easy route). That imaginary birth story/life story is a lie and all of our lives are filled with blessings AND challenges. You are a talented woman who obviously loves her family. They all are blessed to have you. Best wishes to you all.

    Hillary

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  76. I am so sorry to hear of the difficulties that you, the family, and Eleni are facing. You are always a pillar of strength and inspiration and I know that if anyone can get through this and be the most amazing mother to a special needs child, its you, Rachel. Send good thoughts your way! I hope that you all find strength and continue to get answers in the coming days.

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  77. Sending love and light from Minneapolis.

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  78. Thanks for continuing to trust us with your story. Praying for complete healing for little Eleni. Love you.

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  79. Thanks for the update, Rachel. It can be so difficult when things are uncertain. Perhaps when you have more information you will see the path to take. I am very encouraged by all of the stories told by your followers, many of whom have had similar experiences. Life is fragile and nothing is for certain. Thinking of you and your baby...

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  80. II am hoping for the best possible outcome for you and your family. Special thoughts go to Eleni, Liam and Aria. All of us are thinking of you!!!

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  81. My younger sister has cerebral palsy. We as a family have faced so much because of her condition, but I can say I we have been blessed with strong and caring people in our lives. You will be too, it's just how it works. Please read "Welcome to Holland" it's a poem that really helped my mother cope with the same news, and hope it can do the same for you. These next few years won't be easy and I wish you the best. If you have questions, please feel free to ask even if they are personal.

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    1. Such a touching poem indeed! Thank you for sharing it.
      Dear Rachel and family, please receive my kindest thoughts.
      Anne de Waxholm

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    2. I just read the lovely poem, Welcome to Holland. What a blessing it is.

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    3. Yes, a kind reader sent me a copy and I did find it helpful. Shared it with Brandon too.

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    4. I came to this post tonight to try to give something to you, Rachel, and I find that not only do I still not know what to say, but I'm taking away something for myself. This poem speaks to me, and yet again, as always, you've created a place for people to come and share and learn and be with one another. Even though I don't know what to say, I want to add to the comments. You and your family are in my thoughts and prayers.

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  82. The photo you have shared of Eleni is heart-stoppingly precious. There is a beautiful little person inside that delicate body, waiting to unfold. She'll be different from what you expected, but they always are! It's clear from the comments here that you are not alone in this struggle, and that you will face this new life with your usual love, courage, and emotional honesty. Thank you for keeping us all in the loop.

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  83. Sending lots of love and prayers. Hoping

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  84. Our love, prayers and thoughts go out to you for your precious baby and to your family!!

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  85. You and your family have been in my thoughts a lot. Sending much love to you all.

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  86. Our love goes to you all..My son is autistic and has many obstacles to overcome..Our lives changed as well when he was born,the path we had planned for him and for our family changed and is constantly changing..This child has shown us True Love and compassion for others in a way that is humbling and I say a big Thank you every day that he is in my life..Eleni is a fighter & so are you..Keep strong Mama.Xx

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  87. Dear Rachel my heart goes out to you. I am a Mum living near London, England but I feel I know you through your blog. When my 24 year old daughter (and mum to 3 small children) was diagnosed with an aggressive type of breast cancer I thought my life had ended. Then the day following her diagnosis I was in a supermarket in a shocked daze trying to buy food for her when a friend tapped me on the shoulder and just said ' God gives you the strength for the day' and I thought I can do that I can get through one day at a time go to bed and then do it again tomorrow that's all I needed to do. And that's what I did through many many months of treatment and uncertainty. I showered my family with love every day. It's now 7 years later and we made it through. I do hope this helps you and your lovely family xx

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  88. I am so sorry, Rachel. My thoughts and prayers are with you and your family.

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  89. My heart aches for you all. Continuing to offer prayers.

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  90. So sorry Rachel. You and your family continue to be in my thoughts and prayers xx

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  91. Oh, Rachel ~ ~ hugs, dear one. In the midst of such personal times it's so easy to hunker down and hide in our caves, but you have opened your heart and in so doing you will receive immeasurable comfort and strength from all of those who love and treasure you and your entire family. Let us be your arms from heaven whenever you need us. It's a privilege to walk this journey with you ~ ~ in prayer and deep affection.

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  92. Rachel, i missed this!!
    Really, Where have I been. I just decided today to see what was going on.
    Now I am devastated as well. I am praying for all of you.
    My Lizzie spent two months in the NICU with premature birth, so I know this anxious time.
    Trust me, there is a wide range of support and knowledge out there. I will continue to hold you up in my thoughts and pray fervently.
    We have two CP kids living right in my neighborhood. Jackie is 27. She is so wonderful. She can walk with help, the other girl is a twin, (her name is amazingly, Rachel too) is actually Christina's age so that would be 30! They both live independently with assistance. They have a good life.
    I know this is a shock. I JUST learned today. I am not sure why I have not been getting email updates... as I was looking for that.
    As with all of the others here, I am also right by your sides. Praying

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  93. Still thinking of you all with tender heart.

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  94. Praying for you and your family. X

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  95. I have my fingers crossed that Eleni (and you and your family) continue to grow in strength every day. You are so brave to share such a personal event here and I feel privileged to read about Eleni and her progress. Much love to you all XXX

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  96. I continue to keep you, Eleni and all your family in my thoughts and prayers. I hope that your precious little girl will soon have the strength and ability to open her eyes and see all of you who love her so very much and that she will grow and blossom day by day. I know that the path you are now travelling together is not the one you had planned but little Eleni could not wish for a better person to guide her on that path.

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  97. ...A big hug for you, Eleni and your family. Thinking of you all

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  98. I've read through all of the comments so far and I hope that you are uplifted - even just a tiny bit - by so many uplifting stories of families with children/siblings with CP. I have been praying for you all and will continue to do so. Eleni is going to bless you with a love and generosity beyond what you could have ever imagined. Keep praying, and keep leaning on God. He will provide. xoxo

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  99. I thought of you and baby Eleni often since reading your post on her birth. Can't imagine how difficult a time this must be. Continuing to think of you both xx

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  100. I'm so sorry Rachel, will be keeping you and your precious family in my prayers. My husband's aunt suffered a loss of oxygen at birth and has CP. She's! 60 this year, and despite the prognosis at birth, she's held down a job, lived by herself for the last 5 years with support, and has a happy life. Hope remains x

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  101. Dear Rachel,
    what a hard time for your family. I know its hard but dont think about the future too much. Go step by step through each day a take care for yourself. Little eleni can feel your moods and gets energy out of it.
    Hugs and positive thoughts for all of you.
    Anja

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  102. I have been thinking of you and your family a lot over these past few days. Thanks so much for the update given that it is such a hard time for you all at the moment.

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  103. I'm thinking of you and your family and wish you the best that is possible. I read through the comments and saw that there's hope and what life can become. I'm crossing my fingers for you!

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  104. Once I had a baby in the NICU and I was told that he would be profoundly retarded and probably not walk or talk. I cried for days at what a terrible mother I would make for this child...I was sure that I could not do him justice. My husband who doesn't usually do well consoling me offered me one thing to focus on. "We will just give him the happiest life we can." It helped me to simplify my fears and take them on. He also proved the doctors wrong and gives us the usual grief typical teens do, so we were very blessed. I pray that someone says something simple that helps you cope for now. Your picture of Eleni is beautiful. Thanks for sharing it. It is a great reminder of the beauty we all possess. Many prayers of peace and comfort to you and yours.

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  105. My thoughts are with you, your family, and Eleni. Well wishes for you all!

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  106. Continue thinking of you and your new little Eleni and praying for you and your family .

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  107. You and Eleni and your entire family are in my prayers. God Bless you and give you strength.

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  108. Rachel, I pretty much second what ever I've rise has said. I have a surrebuttal love for kids with CP. I used to nanny a boy with very severe CP and went a couple of singers to CP summer camp. Don't know if anyone had shared the Holland story with you yet, but you may find it fits. With love, kat. Nurture circle. http://www.our-kids.org/archives/Holland.html

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  109. Wishing your family peace and strength. You already have the love!

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  110. Can't stop thinking about you and your family. So sorry. Have been through something just a teeny bit like this and it's heartbreaking when you expect that the womb is the very safest place a baby could be. Sending love.

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  111. So sorry, I've been in my own tailspin of health issues over here and missed this. My thoughts are with you and your family. xoxo

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  112. I am sending you and your family all my love. You have a tremendous strenght and good job, pumping your milk! When you feel so powerless, it's good to know there is this little thing you can do to help. You are in my thoughts, constantly.

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  113. Hoping our comments bring you a bit of peace and comfort. Your quilty, blog-friends are big prayer warriors for Miss Eleni. Hugs to you mama!

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  114. Hoping our comments bring you a bit of peace and comfort. Your quilty, blog-friends are big prayer warriors for Miss Eleni. Hugs to you mama!

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  115. Fellow homeschool co-op mom here..thinking of you and praying for sweet Eleni!

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  116. Rosemary B here again: <3
    I wish I lived closer. I would zip right over and help you.
    Just know I am here to help in any way you think you could need me.
    My prayers are constant.

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  117. I think of you every day. All my love and best wishes.

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  118. Rachel, seeing that little glimpse of Eleni brought back a flood of memories from the months my daughter was in the NICU. What I remember most about that time was the grief and exhaustion and how it seemed like it would go on forever, but so many years later, it feels like a small little bump in the road compared to the joy and love that my daughter has brought me despite the rocky start. I'm glad you have a diagnosis because the uncertainty can be so hard. And I'm glad you're pumping - for me that brought a lot of sanity because it was a calming, concrete thing I could do to help my child even when I couldn't hold her or make things better. Wishing you and your family peace and strength. And so many prayers for Eleni's continued healing (I saw your comment that she had wiggled : )

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  119. Rachel, my thoughts go out to you and your family.Keep looking on the positives every day.

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  120. Rachel, my sisters daughter was born with cp and is on the low spectrum but I remember the early stages when we didn't know how she would be affected and how scary that was, she is a very happy 6 year old now. Sending you all good thoughts.

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  121. This news is so sad and I am so sorry for your loss. Thinking positive thoughts for you and your family. Welcome Eleni. Remember to take care of yourself.

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  122. Praying for you, Rachel. Praying especially that you will be able to take life moment by moment, trusting God for the strength each (tiny) step of the way.

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  123. Rachel, although I don't know you personally I have been following your blog for quite some time now and feel as if I have come to know you. Since you shared with us the news of Eleni's arrival you have been in my heart, my thoughts and prayers continually. May you continue to find strength, hope, love and faith through the weeks and months with your beautiful new daughter and the rest of your lovely family. Keeping all of you in my heart and prayers. From Diana in Texas

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  124. Rachel my thoughts and prayers are with you and your husband and your beautiful children at this time. May the Lord comfort you and give you strength.

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  125. You and your family are in my prayers.

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  126. I am so moved by the people who have gone through similar challenges sharing their experiences with you, Rachel, and I hope they bring you some hope for what your family can and will undoubtably be. I don't have relevant experiences to share, but I am sending my heart-felt love and strength to you and your family.

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  127. Hoping strength for you and family during this time. Hoping support is surrounding you.

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  128. You and your family have been in my thoughts often since I read your news (my previous comments seem to have vanished). I wish I could be there to lend some support or to give you a hug. Praying for you and little Eleni

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  129. Sending you love and many BIG hugs!

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  130. Wow Rachel, somehow I completely missed the news of Eleni's birth and all of this until now. I'm so sorry for all the despair and pain you must be feeling. But I am also so hopeful for you. Just know that I'm thinking of you friend! XOXOXO

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  131. Rachel, its all been said and there is little I can add. Just love and hugs ! Wriggling is good so hold on to that ..day at a time and look after yourselves and your wee ones.

    Thinking of you all,

    XXXXX
    Freda from Edinburgh

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  132. Eleni is lucky to have chosen your family. You show great courage and you will help her through whatever comes. Stay strong. With love.

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  133. I think of You and your Family

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  134. You will surround and uphold Eleni with quilts and love and she will give you her all....and I and all the many people who you have inspired with your blog and spirit send our strength and love ....

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  135. I cried when I read your post... I wish love could heal too. My prayers are with you and your family.

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  136. Rachel and family, Know that you are loved, that little Eleni is loved. Eleni chose this time to come and she also chose you to come to as parents. You're up for this and while the sadness can overwhelm you at times, this is the new normal and you'll rise to the occasion. I bemoaned the loss of "normal" in my younger days and my husband brilliantly said, "This is the new normal." As soon as that sunk in, I was able to let go of my expectations for the life I expected I'd get and live the "normal" life I had. Give yourself time to adjust (looks like you're doing that with much grace) and try to find something good to be grateful for every day, it really will help. Our oldest daughter, Erika, now 25, has cp and while she has never walked and her physical abilities will always require help, she lives independently, is working towards her 4th college degree, and most importantly is such a hilarious pistol! Erika as a human being is the Erika we see; her personality can't help but shine through in all its cranky, quirky, funny glory. It sounds trite, but the gifts in this for you and all your kids are enormous. Really, we're all on a spectrum of one sort or another - it's just that cp is a more visible spectrum. While our other three kids are not physically disabled, they each have challenges of their own in their own ways, even as adults. When we discuss our grown kids, Erika is not the one we worry about the most! We think of Erika's challenges as just more kid challenges. I guess I'm telling you this so you'll know that there is a light at the end of the tunnel and your future is there, no matter how bogged down you can get in the daily sadness or sense of loss. And your older kids will adapt because that's what they're best at! I get the weird sense that you're doing an amazing job already - with all the love, all the joy, all the sadness and all the life.

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  137. Sending you and your family lots of love from Canada...

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  138. Lean on the Lord, things in life we do not understand as we do not know the Lord's plan for us. I lost my daughter 15 months ago. She was 26 at the time, a tragedy I still can not emotional comprehend. But one thing I can tell you is Jesus carries me in the palm of his hand daily. He took Ashley, my daughter and her fiancée, Brandon both. I can not undo the accident, but knowing they were both saved, and are in heaven, does comfort me. Jesus is with you and Brandon as well as your other babies, he is in control, and I am praying for a miracle for his mighty power to heal this little angel Elena, to carry you and Brandon in his loving hands and you will feel his love at this time of sorrow. I pray for you both to be strong emotional for your other children, and a quiet place to weep when you need it. I will continue to pray for your entire family. Cling to everyone who wants to help, even with the smallest task. Keep sewing, as you need an outlet and hopefully Brandon has an outlet as well. I love you all and let the peace of the Lord be with you and your extended family.

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  139. My family is thinking of your family. My uncle had cerebral palsy and my grandma was his caretaker for all 33 years of his life. Pretty sure those were the best 33 years of her life. As a mom myself, my heart is aching for you.

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  140. I've been away from the internet for a bit and thought I'd come in and check on your (then) pending birth. I'm so shocked and dismayed to hear of the outcome. How unprepared for this state of events you must have been. However, I know that you and your family will be able to offer Eleni all the love and support she needs and will fight to allow her to flourish in life.

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