Monday, May 25, 2015

together Alone

So much has changed.  The things I used to do, I don't.  I don't have time to walk with friends, follow my favorite blogs, read that book for book club.  And yet there's much being accomplished around here.  For one, I'm making lots and lots of milk.  Out it goes by one tube and into baby by another - the most unnatural thing.  Also, our house is clean, the laundry done.  It's strange to accomplish these mundane things and with them the appearance of wellness and order, when at the core all seems most horribly undone. 

Sometimes I enjoy hanging a string of colorful cloth diapers on the line.  A little bit of sunlight and fresh air.  I've kept up with a little sewing and a little blogging, just enough - I hope - to keep my business afloat.  I'm mostly getting enough sleep, just not enough life.  Where are the happy anecdotes?  Or, even just smiles?  Where is the joy that babies should bring? 

Instead there is worry.  Am I doing enough for her?  What can I do for her?   Have I researched enough to find the best answers?  Have I passed by a time when she could have interacted, could have turned her head to my voice or moved her eyes to mine, could have let me stretch her tight muscles, could have been enticed to move in any way.  And what about doing for them - the other children, the husband.  And then for myself.  I wonder, am I OK?  Who am I now with so much changed?

There is worry enough for today, and mountains of worry for the years far ahead.  But that I won't look at, not today.  It is nothing, I say NOTHING like the worry you have for a presumably healthy child.  I envy those parents who worry about a difficult sleeper, a colicky infant, a late talker.  They are blessed to carry so many happy assumptions that would be, for me, just wild, unfounded, vulnerable hope.  And I do hope.  My hope feels like stepping out on thin ice.  I can't even see the shore.

I feel tricked by fate.  Trapped.  Alone, even though I am not.

I have friends who do anything they can to help.  Anything.  I have family who come to lighten my load several times a week.  I have children that pitch in when I ask.  I have a husband who has given me this day to catch up on some work.  I have monies gifted to cover some of Eleni's out-of-pocket therapies.  I have a beautiful, growing baby girl.

But when I pick her up, and she does not look at me...

When my milk nourishes her, but she does not know my breast...

When I smile and sing to her, but she has yet to smile back...

Then it does not matter.  We are together alone.



{Afterward}

Yes, I am aware of postpartum depression.  Yes, I have shared my heart with friends and family and am even able to contact someone who's gone through a similar tragedy.  Don't fear for me, but only allow me to express some of the pain I'm experiencing.  I will follow up later this week with an update on Eleni's progress, along with her 3-month photos.  I just could not go on to do that without acknowledging, for reality's sake, the heartbreak I also feel.  Life is smiles and tears.  I have struggled lately to know how or when to share the hard side.  Today this felt right.

Rachel


162 comments:

  1. I'm crying. I think of you and Eleni often and am hoping too. It helps to talk (write) about your feelings, so please keep sharing. Sending some strength your way.

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  2. Oh Rachel. My heart feels a little broken for you reading your honest words...the pain, the fear, the worry. I can't even imagine. I hope that writing your feelings will help a bit. I work as a physical therapist and I witness so much grief and despair...but also hope, and triumph and overcoming challenges...and I know you will have those too. Keeping you and your family in my heart today.

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  3. A friend who has incredibly early premies gave me this advice: allow yourself to grieve for the perfect situation you expected. It sounds like you are doing this, and while it is incredibly difficult, you are being very strong in the face of the challenges. My thoughts are with you.

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  4. A friend who has incredibly early premies gave me this advice: allow yourself to grieve for the perfect situation you expected. It sounds like you are doing this, and while it is incredibly difficult, you are being very strong in the face of the challenges. My thoughts are with you.

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  5. Letting out your feelings is good. Please continue to share.

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  6. sending a little bit of love your way Rachel. Sometimes all it takes to beat back the darkness is to exhale and let it out

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  7. We are always here, always listening. <3

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  8. I have a 20 yr old who is developmentally disabled with cerebral palsy and some other stuff and I still feel grief at times. It isn't overwhelming anymore at all like it was in the beginning and I'm very thankful for that. It's so hard but I'm so thankful for what my daughter has taught me and brought to my life. It's been quite the journey.

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  9. Keep sharing if it help if even for a little while.

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  10. Great post...grief takes its own way...always uncontrollable... I just found words that I put on my own blog...without looking...it is something like this...Give sorrow words or...by Shakespeare..so even he knew....hugs from Charlotte

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  11. I know you are grateful for all the good you enjoy. This comes through loud and clear. It is wonderful that you are expressing some of the grief you are naturally feeling. We hear and we care. Please keep writing and expressing yourself. Your words will mean so much to someone else someday who thinks she is the only one who has ever felt the way you feel what you feel. Your words might save her life or her sanity. We never know the good we do by our simple acts in our trying to live good lives.

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  12. Dear Rachel, what beautifully written words - so thoughtful and insightful. Little Eleni is a lucky girl indeed to be in the care of someone with such balance and wisdom. Sending you both love and good energy.

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  13. Bless you, Rachel. Really all you can do right now is get through day to day. Some day this most difficult time will be behind you. Try not to stress yourself (but I know you will, and that's OK) about doing the most, best everything. Just love her, that's the one thing you can do that no one else can. And i can tel you from experience that even in those "worst case evensongs" you are imagining, you will still love her, and she will light up your life every day. It will get better one day. Hang in there.

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  14. oh Rachel...
    I am so so sorry for you.
    And for Eleni.

    One of my best friends has a son (now 16) who is severely mentally disabled. He is still like a 2 year old. Never once in his life did he say "Mom" to her (but he does talk a lot). It breaks her heart.

    I know her, her family and her kids for 16 years now, and I am very sure when I say:
    without the help of the psychologist (they live in Germany, so psychological care for the parents if provided for free by the clinic that treats her son), and her parent group, she wouldn't have made it.
    No one who doesn't have a special needs child can truly understand what you are going through. You NEED the support, the real life meet around the corner support of a group of people in the same situation. Please try to find a support group in your area!

    I send you a lot of strength. You will make it. ALL moms and dads of special need children somehow do.

    (Rachel)

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  15. You have beautifully expressed what it feels like to have a special needs baby. Waiting to find out what your child's limitations will be while hoping for the best and fearing the unknown is excruciating. Don't lose hope. My daughter with CP finally smiled when she was 5 months old.

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  16. Rachel, I do not know you, although today I was making one of your quilts. I appreciate you sharing your pain and struggles and my thoughts are with you and your baby.

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  17. Much love and strength to you, Rachel. Your words were poignant, heartfelt and painful. Thank you for sharing these fragile feelings with us. Our hopes for Eleni and you join yours. Peace be with you and the calm certaintude that there is no better mother for Eleni than you.

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  18. Thank you for sharing the bad with the good. I don't know how much of a comfort it is, but you have a quilting army behind you that cares for you and your family. :) Prayers from KY, looking forward to your update later this week.

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  19. Thank you for sharing. I appreciate your honest words and its once reason I love your blog. You have a lot of supporters rooting for you and your family.

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  20. you and your family are in my prayers.

    there are so many people who are with you and here for you. please know you are far from alone.

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  21. I don't know if this is postpartum depression or just a very logical response to a very frightening world of unknowns and fears that you find yourself embroiled in. If you are concerned see someone, but also continue to educate yourself to the best of your ability about everything going on around you. I hope you get to spend a few minutes every day doing the pre-baby normal things with your other children and feeding your artistic soul. I hope that you and your husband find happiness in the little joys your baby brings you and that you can recognize them as they bring you closer. And most of all I wish you a peaceful heart.

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  22. I admire your courage. Actually I plain old admire you, period. I rarely comment but I always read your posts, and I keep you and your family in my thoughts. Odd though it sounds, it feels almost like an honor that you share your feelings here, where I too can read them. So yes, in some of your moments you will feel very much alone, but at other times you'll know that you are very much present in other people's thoughts, even in the thoughts of people you don't know.

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  23. Prayers for you and your family.

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  24. I hope this can be a place where you can share without any judgement, any free advice, any expectations. Just hugs.

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  25. My heart hurts for what you and your family are going through. You are often in my thoughts and prayers. I fervently hope that as you work through these very difficult beginning times, that your future with Eleni is brighter and more beautiful than anything you can possibly imagine right now.

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  26. Hugs and holding being sent to you to use when you need them. Hard times are indeed here at your door. Know that people are here for you and your family

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  27. I wish I could hug you. Instead I will pray right now for you and your sweet family.

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  28. I'm so glad you can share, and happy to shoulder just a tiny little wee fraction of the load.

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  29. it's ok to hurt and mourn. I've been there, in a different way, with a child who became disabled later on.... and I had to let go of some of my dreams for her and love who she IS not who she might have been. It took time. Praying for you.

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  30. Life has a way of handing us different things then we expected sometimes. Blessings still, but different somehow. And I think it's very brave of you to not only recognize that, but to share how your feeling. There is an honesty and openness about your posts that is so real. A great big huge internet hug to you.

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  31. Oh Rachel my heart breaks for you. I have no words. Only prayers.

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  32. The hope and the grief are both real and right. Share whatever and however you want to share. If we can do nothing else, at least we can give you this space to unload. Hang in there.

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  33. I admire your honesty. You are so brave. Thank you for sharing.

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  34. I appreciate you sharing all the feels - I have a feeling you will help a lot of people with your honesty. I keep you and your family in my thoughts.

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  35. You are a brave woman, going throug this and now writing about your worries. Just keep writing and talking about it, it would be helpful. I am sure the day Eleni smile back to you would be the greatest day.

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  36. My thoughts are with you.
    Myrto

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  37. Lots of love Rachel. We will be here for you even if you need to take longer breaks from blogging.

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  38. Vent, express emotions and vent again. Talk at me, talk to me, just keep talking. I hope Eleni finds a way to show you that she sees and feels you soon xx

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  39. So important to be able to express the fears and aloneness. Of course I can't know or truly understand and in many ways this is a distant forum but indeed you are not alone.

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  40. You are a very powerful and eloquent writer, Rachel. I hope your words reach some Mothers who are in the same place right now so that they know that their feelings are what others feel, too.
    Have you been able to talk to other Mothers in similar situations, either in person or online? They can be very valuable in helping to find resources and can be good sounding boards when it all gets to be too much. Just a thought.

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  41. That’s a very honoust post Rachel and it’s good to share your grieve, doubts and shattered dreams for Eleni with us. Your post title says is all. Take care, I’m sure Eleni feels your love!

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  42. Thank you for sharing Rachel and for your honesty in revealing your true feelings. I'm sure this will help other parents in similar situations. It is so easy to pretend everything is fine and put on a brave face. Hope Eleni progresses and much love to you and your family.

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  43. Just know that you are in my prayers.....

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  44. Never stop sharing. Your words and your honesty are beautiful. We may not be able to do much for you and even less for little Eleni but we will always be here to listen, to pass on hugs and wishes, thoughts and prayers as best we can.

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  45. I hope for you and your sweet baby that someday in a near future there'll be a way to help you:-)

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  46. A very touching and honest post. I don't have anything useful to say but I wanted you to know this moved me enough to want to write something! Hugs from afar.

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  47. I cannot begin to imagine all that you are going through, but I am glad that you are finding a way to share your thoughts through this medium. Know that you and Eleni are never far from my thoughts and always in my prayers. Your feelings and thoughts matter and are real and right and its therapeutic to get them out and share them as you see fit. May you find peace and joy and blessings in each day.

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  48. Beautifully worded "together alone" praying for you xxx

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  49. My heart aches. I'm thinking of you.

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  50. My heart aches. I'm thinking of you.

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  51. (((Hugs))) Many good thoughts and prayers are still going out to you.

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  52. Keeping blogging, keep hoping. We, your readers, even though we have not met, are hoping and praying with you.

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  53. I type then delete, type then delete, I can't find the words. Tears, prayers, and hope for today you find peace, strength, and rest for your soul...

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  54. I wish I could wrap you and Eleni in my arms and give you comfort.

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  55. Rachel. I am so glad you have expressed your truth as it is today but I pray you will have some joy today as well. Your child knows you are her best advocate. God only gives special children to special parents. I have a special needs grandson who is 11soon. He has cerebral palsy and was a premie at 1lb 11 oz. He is in a normal school with special needs kids but we were told he would not see, hear talk or run. He does all brilliantly. DO NOT GIVE UP HOPE. You are loved and so is Eleni.

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  56. As I read I was thinking, I'm so happy she has this outlet and that, although we might not be able to suggest solutions, we can listen, and let you unburden yourself for a bit. My thoughts are with you. Stay Strong,

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  57. How difficult it is to share the words you did! And how brave! Keep talking, and crying, and ... hoping .... and laughing. Sending you lots of positive energy!

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  58. Ich danke dir von Herzen dafür, dass du deinen Schmerz - und deine Freuden - mit uns teilst, Rachel. Ich halte dich in meinem Herzen. God bless you - all of you.

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  59. It's important to let those feelings out! If you bottle them up they'll do much more damage. You're going through the normal stages of grief for the life that you had hoped for, one day it will get easier. Hugs across the miles, thinking of you all xx

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  60. Thank you for sharing. I'm sure your honesty is making someone else feel less alone in their situation. Best wishes to you all!

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  61. I started following your blog for your crafting, but I am staying for your writing.

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  62. Document it all Rachel. I hope you continue to feel safe to do it here, but do it. Hugs to you.

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  63. You are right to let those feelings out. You are a very strong and courageous young woman but keeping everything bottled up isn't good for anyone. I hope it helps you to know how much love and admiration your followers feel for you and I'm so very glad to hear that you have physical, local support as well.

    This is all still so new for you and your family and I hope that as time passes, you will find some room for those walks with friends and books for book clubs. I moved (and downsized) the week Eleni was born. I'm STILL figuring out how to fit into my new space and what I can do and can't do, etc. That doesn't hold a candle to what you are going through. My point is, it takes time to figure it all out. If I haven't figured out everything on my move yet, how could you POSSIBLY have figured out the adjustments that Eleni's birth has brought to you and your family.

    Hugs to you and yours.

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  64. Rachel, you have every right to vent and on your blog is the perfect outlet. If someone doesn't want to read it they can stop and move on. I only hope before they move on they say a prayer for you and Eleni. Bless you both and praying the day comes soon that she smiles back at you. God brought you to it, he will get you through it. God Bless!

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  65. Thanks so much for sharing. My thoughts are with you and baby Eleni.

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  66. Know that you readers are honored to listen to your thoughts as you feel your way through something that most of us can only imagine. Sending you strength as your family continues on this journey.

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  67. Thinking of you and yours. Keeping you in my heart and in my prayers and sending strength.

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  68. I don't know you other than from here, but I just want you to know I think of you all the time and wish you the best.

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  69. A cross to bare. feelings and thoughts to share
    Prayers from all of us who care.

    lv2bquilting2@comcast.net

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  70. Rachel, I am not sure but I think I may live near to where you are (low country south Carolina) I am sending thoughts and prayers as the others all are, but I am a School Psychologist and if I can ever help you please let me know. As your precious baby grows and needs services and schooling I may be able to help you navigate the services and schools available to you. Special needs children is what I do all day please allow me to help if you need anything. thinking of you all.

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  71. I've wanted to tell you this - I have worked in admissions at an ivy league for 20 years. Our most exceptional kids, the ones with huge hearts and curious minds, often submit essays about their special need siblings and how their relationships have changed them. These are the best of the best - compassionate youngsters who want to change the world - shaped by families who love them so. Eleni will impact her siblings in wise and wonderful ways. You are an amazing woman and your words will help others. Take care of your heart. Know that you have a community out here holding you up.

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  72. Expressing your feelings are so important! Hugs & Prayers!

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  73. So hoping love and caring, even from us who only know you through your blog, will help you and your family.

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  74. Thank you for sharing part of your soul. Life has given you a difficult challenge. It can't be easy loving and grieving at the same time. Sometimes life is a crappy deal. We fall, get up, stagger onward. Eventually we get to a new normal and the integration process makes life a bit easier. You are wise to express your grief and lost hopes. Hugs.

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  75. I am so sorry that you are having to grieve the loss of your dream. I know how long you have wanted a new little baby in the house and the hopes that you have nurtured over the last months and years. Thank you for placing your heart in our hands. We are here to listen to your worries and your fears. We love you and think about your lovely family often.

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  76. Thank you for sharing your heart with us Rachel. Praying for you and your sweet family.

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  77. Dear Rachel, I am so sorry for your loss. It is the best to say what is in your heart and soul and then once said it has less gravity on us, we can then think outside the box for other options, and this is also grief, that encompasses everything you had dreamed beforehand and all you hope will come true now. We, your readers all want to help you in anyway we can as we pray for Eleni and you and your family. Blessings and kindness for you and yours.

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  78. Rachel - I am so sorry to hear of your struggles. You post was incredible. Keep your head up, you are a strong woman and you will get through this, although times will be hard. My thought and prayers are with you and your family often - camille

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  79. Rachel - I am so sorry to hear of your struggles. You post was incredible. Keep your head up, you are a strong woman and you will get through this, although times will be hard. My thought and prayers are with you and your family often - camille

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  80. Sending you prayers of strength, hope and peace!

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  81. I wish I could give you a hug right now.

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  82. After reading your blog today, I felt compelled to respond. Even though I have no idea of your struggles, I somehow feel connected with you as a mother. Know that we are all thinking, hoping, praying for you and your beautiful family.

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  83. After reading your blog today, I felt compelled to respond. Even though I have no idea of your struggles, I somehow feel connected with you as a mother. Know that we are all thinking, hoping, praying for you and your beautiful family.

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  84. With you in love and hope, and tears.
    Janie

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  85. I enjoyed reading this post, not because I am hurtful or hateful but because you are keeping it real, you are sharing your situation that isn't all rainbows and jellybeans. In the virtual world we are so consumed with it is easy to just post the 'good', to photograph that perfectly placed flower vase with the clutter out of shot. I like real life. Eleni is a blessing, she will reward your hard work, you may just have to see that reward in a different way. I am not a religious person, raised a catholic and prefer the principals over the religion, but I have felt myself saying a wee prayer for your girl... for your family. She will know your smell, her heart will turn toward your voice, she will light up and you will find a way to see that. Baby steps. It can be incredible frustrating to recognise that which is sent to slow us down. Best of wishes and love.

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  86. Oh dear friend. Grieving and weeping and hoping with you. Praying for some kind of tangible comfort to sear through that worry. For real connection with people who understand. You are enough. Xxx

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  87. I'm so glad you shared. Oh, if I could bear just a small amount of your pain. You are in my thoughts every day.

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  88. You are an amazing person, and your honesty shines through all of your writing. Sending hugs to you. Wish I could do more.

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  89. Thanks for sharing your heart. You have captured so well the heartache of having a child with serious medical issues. The worry, the grief and the loss. I just wish I could make it go away or tell you it will get easier. The fog lifts and that helps and there is great joy in small progresses. And a loving God who carries us through it all. Praying for you today.

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  90. Sometimes I put my fears and grief aside and take a vacation from them. It actually helps me to have a break where I am present in the moment and enjoying what I can and feeling myself for a while. Then I am stronger when I come back to deal with my reality. I have fit small mental vacations in between treatments and appointments so that for a few days I just live again. Hope you can have some breaks until you feel confident in your new normal and the pain is not so raw. We all hope you can feel the power of our prayers and thoughts even when you are not posting because you will forever have good wishes being sent your way after so many have been touched by your family. Peace and joy.

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  91. Lots of love to you, Rachel. I've been keeping you, Eleni and the rest of your family close to my heart. I can't imagine what you are going through, but I am sorry. xo.

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  92. Your blog today was profound and yet so beautifully written. Prayers for you and your family. Hugs and hope

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  93. I'm sending love, hugs, and many many prayers your way, Rachel - as I have been doing since before Eleni's birth. Continue to share your heart with us - we are here for you!

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  94. Words cannot express the respect and admiration I have for you for the incredible courage you have. I will simply say you are awesome! God bless you and your family.

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  95. Thank you for sharing, you've expressed many feelings I've had and continue to have over the course of the last 12 years concerning my disabled child. I'm glad you have this safe avenue to express yourself.

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  96. Life IS smiles and tears, and you are allowed your pain right alongside your joys and faith. Thinking of and praying for you, dear lady. Change is so difficult. I'm not going to say anything to try to wipe away or cover up your pain. Just listen and be with you in it. Hugs, Rachel, for all of you!

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  97. Dear Rachel, it's so healthy that you shared your feelings and didn't deny them. I don't know you personally, but I "hear" you and think of you and your family very, very often. With love and best wishes.

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  98. Such a bittersweet time. Praying for you and sweet Eleni. Please share your feelings. Your readers want to know because we care for you and your sweet baby.Wish I could do something to make you feel so not alone.

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  99. I am so glad you are sharing. You cannot and should not hold it in all the time.
    I cannot compare your reality to mine, taking care of two 92 year olds, but I can understand
    the feeling it is to have this sudden change in your life, that does consume your mind.

    I think you know you can always say what you are feeling on your blog. It is your blog.
    You are not whining for complaining. You are releasing the struggle.
    This is also a part of grieving. No matter what changes good or bad that happens in our lives, we have to come to some point of acceptance, but that does not mean that that is the end of the struggle with dealing with a change in life.

    I guess what I am trying to say is, yeah. I want to give you a hug.
    Sometimes it feels good to just silently scream into a pillow, call God, Tell Him we forgot what the plan was.
    Do not push yourself too hard. Do not feel like you have to keep up a blog. (yes, I used to have a kitty blog for sweet friends that loved my kittyboys) I can't do that anymore.
    Latch on to what is important today.
    You do not have to have all of the plates spinning. We do not have to be strong every day.
    We are alive, Praise God.

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  100. What a beautiful post. Thank you for sharing your honesty with us. You truly are a strong and courageous mother. Eleni is very lucky to have you for her mum. Lots of love and hugs to you and your family.

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  101. Thank you for sharing and being honest. I never once thought "post-partum depression". I thought: honesty and just a woman in pain going through the hardest thing!!!!!!!!!!!! Unknowing, worry, sad for hopes of a completely different scenario............and, of course, worry for future. I loved your phrase about the future being filled with worry, but you will not think of it today. Praying for you and your baby, and that she'll smile at you very soon.

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  102. Oh my goodness...prayers for your Mother Heart and your husbands Father Heart. I cannot imagine what you are going through. At the same time, I would not put this as postpartum depression...I would put it as life changing, not what I hoped for, not what I ever expected in my wildest dreams worries and concerns...but that is my opinion. Both types of feelings are real and hopefully can be dealt with.
    I think you are brave to write this, it will help others in so many ways. Sending you my prayers for you and your family and my very best wishes. Sue.

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  103. Dear Rachel - I wish I could comfort you! One sister to another, even when they are healthy, there are no guarantees for happiness. This I know.

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  104. Hugs, Rachel. I hope by sharing with your readers you are able to feel just a little less alone.

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  105. My daughter in law and son have 2 disabled children. The first has multiple disabilities, which seemed to appear like a slow revealing of veils, before the final picture was clear. I feel so much of your pain. Heather finds support and hope in others experiencing the same thing. It is so difficult for those with healthy children to understand the shock and disbelief that comes with the outcome of a birth that does not bring the expected joys. Hugs.

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  106. My heart goes out to you and if it was possible for anyone to help you through this lonely struggle am sure that they would be there for you. But, motherhood is a special place where you can only go step by step one day at a time but be sure to appreciate the love of your husband, children and the rest of your family.

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  107. Oh my! Your post today touched my heart in a most profound way. I have to tell you that I am sometimes surprised to find myself thinking about you at random times throughout the day... you, my friend whom I've never met. I have followed your blog for quite a while now, took an online course from you, been amazed at your talent with sewing, with color, admired your ambition, the ordered rhythm of your days, the beautiful way that you express yourself. I am old enough to be your mother, in fact I have daughters near your age. You have impressed me, taught me, given me much to consider in many aspects of life. I just wanted to tell you that I am so sorry for the pain that you are going through ... I wonder sometimes at the unfairness of life, the trials, the struggles that we endure as we navigate this thing called, Life. I, am grateful to know of God, to believe in Him, in His goodness, in His love for us, His children. I know that he is mindful of each one of us and that your pain is His also. Thank you for your beautiful words today. Thank you for sharing how you are "really" doing. Hang in there, dear Rachel! You are an amazing person! I feel it in every blog post that you write. I too hope, I have faith in our All Knowing Father and I will pray to Him for you, for your family and for your precious baby girl. With loving thoughts, Julie

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  108. Oh Rachel, thank you for sharing. I'm at a loss for words but please know you are in my prayers often.

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  109. thank you for sharing so much of yourself here, both the joy and the sorrows. it's a privilege to read your words. i can't imagine the pain and heartache you are going through, but i can only try to send you my love and support.

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  110. Wish there was something more to do than wait, worry & hope for your beautiful Eleni. You really are doing all that you can. Believe it. Love your daughter and husband and of course your other children. It is really all that you can do. Sending you constant thoughts of peace, hope & Love.

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  111. This is such a beautiful post Rachel to make us realise the difficulty you are facing and you sound like a very strong person. I'm praying for you and your family that hope never fades and that Eleni makes as much progress as possible.

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  112. I have tears in my eyes reading the beautiful words from your heart Rachel. Love is the most powerful force in the world and can cross all barriers. Just know that when you hold Eleni, when you feed her, when you speak to her and sing to her your love reaches her even though she is unable to respond at the moment. I believe with all my heart in the power of love because I have experienced it in my life. And most importantly keep loving yourself. Sending a big hug from across the ocean.

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  113. Oh Rachel, What else can I say? Just find time to grieve and time to heal as the picture slowly unfolds.Your recent post while making the tree quilt talked of losing yourself in your art and I tuned in to that statement finding designing and quilting an absorbing almost meditative process which has given me an escape from Life over the years.
    I also found the letters I wrote 35 years ago venting my pain hidden at the back of my drawer this week. They were part of my process -- no longer needed now.
    There are no rules for this bit -just take time to smell the roses and make some quilts!
    Love and hugs to you and your strong supportive family
    Freda P

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  114. Being blessed with healthy children I cannot imagine what this is like for you. I understand it better after reading this. Thank you so much for sharing. I hope it helps or r elieves you too.

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  115. Oh Rachel. What to say? How to help? As always your words are eloquent and like little arrows to all our hearts. And in turn, our hearts go out to you. You hoped and dreamed for so long, and here little Eleni is, and it is so clear that you love her, but she isn't what you expected and all your lives have shifted on tectonic plates you did not know existed under you.

    After I had my third, much wanted child, I had a massive breakdown. Weeks spent in bed. Post-traumatic stress from a horrendous birth experience. He's four now and it's left me with an anxiety disorder that occasionally rears its head, and will never fully go away. But I try to think of it as the price I've had to pay for him. I would do it all again to have his sunshiny self in our lives. And I can tell you would choose Eleni like this rather than no Eleni at all. I'm sure that although she cannot smile, her heart must gladden every time you're near. xxx

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  116. Sending you and your family love ~

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  117. Hugs to you Rachel. I am glad you have this platform to share your thoughts, fears, worry, joy and happiness. There are so many who care about you and your family and are happy to see an update here on your blog. I can understand the need to just get your thoughts out there. I hope you continue to share here and we will continue to keep your family in our thoughts and prayers.

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  118. I think it is wonderful you feel safe enough to share on your blog. Yes it is hard and you have every right to feel the way you do. Keep letting it out.

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  119. I found your description of this time to be very beautiful and honest. You seem to be handling such an incredibly difficult, unexpected and disappointing turn of events with grace.

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  120. I just want to hug you. As I snuggle under my colourbrick quilt on a cold autumn night i am praying. Not really sure what to pray for but I guess I just pray you feel his love and his will be done.
    I'm so glad every time I see one of your posts even if they turn me into a blubbering mess.
    Sending you lots of love and prayers.

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  121. My heart goes out to you and your family. I wish there was something I could do... But I look forward to your updates.

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  122. We are here, silent ears, tearful eyes, hopeful hearts. We are here for you, in the distance, in the silence. You are fine, you are doing fine. xoxo

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  123. ive followed your blog for years now Rachel. This post was pure truth coming from your heart. You know we all love you and want to share in your pain as well as your joy. Hugs to you and Eleni.

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  124. Rachel, I have followed you a long time and have watched your little family grow. I'm so glad that you finally reached a point where you felt you could and should share your heart. I have not walked a day in your shoes and I wouldn't even attempt to tell you I know what your feeling. I will tell you that everyday when I look at my patchwork coaster I got from you, I say a little prayer for your family. Much love from your friend in Alabama....Give your sweet children a hug from us..Lisa

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  125. What a brave and honest Mother you are! Prayers for you and your family

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  126. There are such wonderful comments posted here - - I can't imagine adding anything more. But I feel compelled to say, "don't sweep your feelings under a rug, or explain them away!". Expectations can be funny things. Reach out to a community of families in the same circumstances...you'll realize you're not alone, and they're going to have great tips and tricks for life and juggling and feelings, too. (sounds too obvious, but I have heard this from so many families that I know that have gone through similar special needs situations, so I thought I would pass it on) Hugs to all of you and prayers that you will find joy in your new found expectations!!

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  127. Oh Rachel I cannot express enough how much I feel for you. I have followed your posts for a long tine andvtaken every course you did. I remember when you started the courses so your DH could have his vasectomy reversed as you had decided you really needed another baby. I remember when you announced you were pregnant and there was such joy in my heart for ypur family. And when youbfound out you were having another girl and how excited you were. And then you named her Elani which is such a lovely name for this much wanted child. And then itvwent diwnhill but youbwere still positive. You are one of the most anazing people I 'know'. Unlike yearscago when there was no internet you havevthis place to express your feelings, hopes and dreams. Also your sorrow and disappointment for your family and how this is unraveling as Elani grows. You have never been far from my thoughts since you first said you wanted another baby. I justvwish and hope it turns out better than youbare hoping but if it doesn't you are strong enough to deal with it. They say that g-d never gives you more than you can deal with but I truly do not believe this. I do believe that you, however, will prove me wrong. Hugs to you my friend and know that you are never far from my thoughts. Love always Patti xxx

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  128. Hi. Thinking of you and your family. This post was hard to read and reduced me to tears. it certainly puts everything in perspective. Look after yourself.

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  129. Praying for comfort for your family as you grieve, and strength in hope xx

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  130. Thank you for sharing. I too am grieving today for my son, 23, who has recently been diagnosed with bi-polar. What will the future hold for him. When will he get his footing back.? He seems so alone and scared. As a mom I too feel as though I am floating on a iceburg that has broken off from all that is steady. I will pray for your Eleni and you, will you pray for my Ben and me?

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  131. Hi, Rachel - I certainly can't think of anything to add. I just echo the responses of everyone above. You are an amazing person, loving and talented and strong.It must be so frustrating and heartbreaking, to want and to hope and to try... I'm glad you have this outlet and a supportive family. .I add my prayers, my admiration, my love, along with so many of your readers.

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  132. Rachel -- others have been so eloquent and I wish I could join them with words that offer comfort. All I can do is send lots and lots of love in hopes to underscore the "together" in Together Alone.

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  133. There's a time for both, for grieving and also for putting every last bit of energy into raising Eleni (and her brother and sister).
    Having a child with special needs is really painful - very much so in the beginning, but again and again, and I'm glad that you dared to voice this. Thank you for that.
    Acceptance of the pain is part of moving forward, even though it probably does not feel that way for you now. I really wish I could take the sting out of some doctor's prognosis or words, but that's not possible.
    (())

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  134. Dear Rachel,
    I'm feeling so much with you - knowing this "trapped" feeling after the birth of my handicapped son 23 years ago. We learned to live with this, it's not easy. No, it's hard. I do not want to comfort or encourage you like "it will get better with the years" or anything similar. You found so clear words for the way it feels, yes it's true - this is just the way it feels like. Thank you for sharing this with us.

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  135. Thank you for sharing. Even though I don't know you--you're doing all you can. You have many people around the world rooting for you and Eleni!

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  136. Sending you love, smiles, and soul shines

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  137. I don't know you and you don't know me but what a privilege it is to read what you share from your heart. I feel I don't belong here (reading your blog). You are very brave and very strong. Be as if only today matters.

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  138. Oh my gosh Rachel I wish I could make it all better...or just give you a massive hug my sweet friend xoxo Clare

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  139. XX your family is in my prayers! You are not alone!

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  140. Thank you for sharing. You and your family are in our thoughts and prayers. God loves us so much. One of my favorite scriptures is from Proverbs 3:5. Trust in The Lord with all your heart and lean not on your own understanding. In all you ways acknowledge Him and He will direct your path.

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  141. Very brave of you to be so honest. Lots of love and good wishes for the long road ahead.

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  142. Dear Rachel, thank you for sharing this. You are a strong, lovely, and brave mom. Eleni is so blessed to have you fighting for her. I continue to pray for her, you, and the rest of your family.

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  143. Oh, Rachel, this really spoke to me. Brought back a rush of memories from seemingly endless NICU days. That grief. That worry. (And there is a difference between it and PPD, as you infer.) Thinking of you and Eleni and your family often.

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  144. Oh, Rachel, this really spoke to me. Brought back a rush of memories from seemingly endless NICU days. That grief. That worry. (And there is a difference between it and PPD, as you infer.) Thinking of you and Eleni and your family often.

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  145. Oh, Rachel, this really spoke to me. Brought back a rush of memories from seemingly endless NICU days. That grief. That worry. (And there is a difference between it and PPD, as you infer.) Thinking of you and Eleni and your family often.

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  146. Rachel, Thank you so much for sharing. I think about you and Elani often. I was just catching up on your blog, so I also just read the post on her progress and it brought tears to my eyes, I'm so excited for you both. Add me to the list of people sending you and your family well wishes from far away.

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  147. Sending massive hugs - this is your space and life isn't always pretty - i personally love that you are sharing the darker moments - as I am personally just coming out of the PPD fog - even if you are not PPD - we all have these feelings. Sending love for you and yours.

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  148. I seem to read blogs in an out of order way that I can't explain (which is why I've commented on more recent posts but am now moving backwards to catch up). So I'm just now reading this. I hear your heartbreak and I send love your way.

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  149. Been going through your posts and I thank you for pouring out your heart to us, most strangers. God had given you the gift of expression and I feel that thru your openness you will strive and Eleni will most certainly achieve more than you ever imagined for her. God is truly a miracle worker; )

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  150. Sending hugs and good thoughts. It's hard to share and be so open online, so I am proud of you for doing that. We don't know each other, but I know it's tough to be so open online where people can be judgmental. I hope you continue to do well.

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  151. Hang in there! And doctor's do not know everything. Most of the undoubtedly do the best they can. Two cases of such situations... a relative was told her daughter would never walk. I can tell you she is walking and have been for more than 30 yrs now. It was a rough road. .. ... A friend more recently had a child who had numerous series of convulsions. The prognosis did not look good. Two years later they have a beautiful healthy daughter. .... so miracles do happen. Aim for the stars!

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