Monday, December 21, 2015

big brother + sister

my children, Dec 2015

Becoming big brother and sister is often a rocky transition, but when baby is so different than what we've all imagined and prepared for, when baby rocks mom and dad's world in a frightening way, it's really too much for any child to handle gracefully.  You've asked how Aria and Liam are doing.  Thank you.  It shows you care about them!  So far I've declined to answer because my first instinct is to protect their privacy.  And yet, my opposing instinct is to portray our reality with candor to help others who might read these posts.  Time has gone by now and things are starting to feel more... well, I won't say "settled", but they are starting to feel more describable.  I think I've found a way that feels right to share.

First, a little history.  When the neonatologist broke the terrible news to us that day, the "severe global brain damage" news, and we were bombed with the reality that this was not going to go away, Brandon wept for all of us, but especially for Aria and Liam.  You see, when Brandon was eight years old, his family was hit by a semi truck that rendered his big brother disabled.  That loss left a huge and decidedly negative mark on his childhood.  His parents are kind and loving people, but it wasn't enough to cover over that loss.  Brandon wept for he knew how Eleni's birth injury would radically change our lives.  Despite the optimistic things people say, based on his experience, my husband didn't anticipate anything positive to come out of this for Aria or Liam. 

How did they respond?  With shock and sadness, initially.  We showed them it was OK to cry.  At the beginning so much about Eleni was unknown.  We could hope that her damage was not as bad as the MRI indicated or that she would have an amazing recovery.  Aria worried, when Eleni didn't open her eyes, that she would be blind.  And I couldn't reassure her.  Liam didn't bring the subject up, I think because he could see how raw I was about it all.

Eleni with her siblings

When Eleni came home they were delighted, and the first few months were pretty good for Aria and Liam.  There was no need to worry them with all the "what if's."  If they asked me about her prognosis, I would answer truthfully about the unknowns while allowing for an optimistic outcome.  Aria was charting Eleni's progress, which wasn't far off a typical child at the beginning, since newborns do so little.  She told me that if Eleni couldn't see she would teach her to knit and crochet and keep busy with her hands.  I know she imagined it could be like Mary and Laura Ingalls.  She talked about how she could help me homeschool her.  I gently mentioned a time or two that Eleni may not be able to learn how to read or do maths.  It was so hard to know what hope to let live at that time.

Everything went south around six months old when it became clear to me that Eleni's deficits are severe and that her recovery may be minimal.  I sank into a depression that I could not and did not attempt to fully hide from my children, who are home with me most of the time because we homeschool.  Meanwhile, Liam was facing a challenging new school year.  He reacted with anger and violence when stressed with his work.  Between Liam's outbursts, my tears and baby's stiffening/panicking fits, our home was truly a miserable place several days a week.  I sort of mired in the mud a bit until Aria broke me out of it with a heartbreaking letter.  We have a notebook we use to communicate about the hard things from time to time. She wrote that our home was no longer a happy place to be, so she wanted to go away to school.  That set me to crying... again, but this time the tears led somewhere.  On the one hand I absolutely understood her desire to escape.  I felt the same way!  But, having it spelled out inspired me to rise up and changed my attitude.  Our home was never going to be a happy place again if I didn't lead the way.

my children, Dec 2015

Since then things have changed quite a lot for the better as far as my attitude and the tone in the house. Gone are Liam's outbursts and Aria's desire to escape.  We've met both children's needs in specific, tangible ways.  Liam started playing trumpet in a school band, where he is flourishing.  We enrolled Aria in a long distance learning program, Oak Meadow, which has been challenging her academically in a way I could not this year.  We also created a private work space for her where she can get away for some quiet study time if need be.  She hasn't been using it much, but at least she knows she's been heard and that her needs truly matter.

I think I'm getting used to Eleni's poor prognosis, but I believe it is just coming into focus for Aria and Liam.  Aria doesn't imagine any longer that Eleni will do school or learn to knit or join her in Tae Kwon Do.  She often comes into the nursery to ask, "How is Eleni doing?"  She craves a positive response, which I'm often unable to give.  On the one hand she chooses to offer to hold Eleni.  She chooses to be a good big sister, to help.  On the other hand holding Eleni is often a scary and stressful experience (even for a grown up), so she gets that trapped look in her eyes after holding her for about 5 minutes.  In those moments I know that Aria comprehends the tragedy that's been dealt our beautiful baby.  The other day it was just the two of us, Aria asking probing questions as she often will.  And I felt it the right moment to tell her that Eleni may not learn to talk.  Little doses of pain.  Little doses of loss.  She is a strong, smart girl with a good heart.  I hope it is not too much for her.

And Liam, he is just starting to grieve.  For most of Eleni's life he has been the one who could enjoy her most.  In his innocence he didn't see her injury so much as the rest of us.  He was able to hold her and smile and coo.  He still does.  But, he's also learned why we are grieving.  He sees it in our friend's baby who can play with toys and crawl and smile.  He doesn't share his grief with me, to protect me, but he shares it with his friends at times.  He loves our baby so very, very much.  I don't want him to know.  I so wish I could protect him from the truth.

Both of the kids starting seeing a children's counselor last week.  It felt like time to encourage them to talk to someone.  I told them they don't have to worry about making Miss Danielle sad.  They can complain to her about how much they miss out already because of Eleni - the cancelled play dates, the distracted mom, the loss of privacy due to in-home nurses and therapists, the homeschool co-op we can no longer join.  I hope they're also able to share their worries and to work towards some kind of wholeness.  Danielle said, at the end of our intake interview, that one of her goals was for the children to be able to look back at this part of their childhood and have positive associations with this time.

For it to be positive for them.  Wow.

I told her if she figures that out to be please let me know, and to be sure to tell my therapist!

my children, Dec 2015

*******

My friend photographed Aria, Liam and Eleni this December before baby's surgery.  I wanted to be sure to capture a nice image of all three of them together, because the future is anything but certain.  I love this photograph because it captures each child's true expression.  You can see the bond that is here despite everything.

And thank you, again, for the love you extend to us.  Please do keep Aria and Liam in your prayers.

xo,

Rachel Hauser


69 comments:

  1. Rachel, these are beautiful pictures of your kids!!! The easy stuf in life is just that, easy. It is the hard stuff that truly mold us into who we are and we can let the hard stuff weaken or strengthen us. It looks like you are becoming a stronger family and I am sure positive things will follow.

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  2. It's hard beyond words to see your children hurt and be unable to do anything to help, especially when you're drowning in grief too. It sounds like you are making some great steps towards trying to help all of you, and all you can do sometimes is try. I think it would almost be easier to lose a child to God, then to lose bits and pieces of hope every day, because each loss is a death of hope. I don't wish your daughter dead, please don't think that at all! I chose to enjoy each day with our son, and do everything we could, when we were told he would likely die, or at best be multiply handicapped. So did my husband, although it was harder for him. Our home too was invaded by nurses and therapists and medical equipment, so we cherished the times when it was just us the most. Miraculously, our son is 27 now, and while he is intellectually disabled, he is able to live in an apartment, has a lot of true friends, is in Special Olympics, and is the most kind and caring young man you could ever hope to have for a son. I wish your little one could have that kind of outcome, but my son didn't have a severe brain injury. He, and us, got lucky. He does have severe mental illness, but it's managed with medication which he understands he needs, and makes sure he takes. All I can give you is my prayers to enjoy all three of your children, and to work HARD on your relationship with your husband. You don't want your kids to suffer another heart breaking loss. Go out once a week and spend time as a couple and reconnect, it's the most important thing you can do. We hired final year nursing students to come in once a week so we could get away, and after a time or two, all of them refused payment. Wishing you joy this holiday season, and enjoy what you have instead of what you've lost for one day. It will be the best Christmas you'll ever have. cdahlgren at live dot com

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  3. Rachel - I am so sorry that this happened to you and your family. Hang in there and do what you can. Billions of hugs and kisses -

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  4. Rachel, I loved seeing these photos. Thank you I for sharing...it is such a difficult thing to do. But really what I want to say is you are an amazing mother. A mother does not need to be perfect or happy all the time, they simply need to be there for their kids and do the best they can for them. You are so clearly doing that despite your own losses, fears and sadness. I hope you are giving yourself the same compassion and understanding you are giving your children. *hugs*

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  5. These are really lovely photographs! I am so glad to be here to read your thoughts and share in both your progress and let-downs. You have undoubtedly had an impossibly challenging year, but I see your strength coming through as you find your way. You're right about not knowing what the future will bring - all we really can do is live fully in each moment. I wanted to wish you a Merry Christmas! I hope 2016 will be little kinder and a little more settled.

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  6. Your children are beautiful. Thank you for sharing this. It is so very much for all of you to handle. I will keep your family in my prayers.

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  7. Yes, I have been praying for Aria and Liam! Thank you for sharing so candidly. Your children are learning how to love someone who is needy and helpless. This is a hard lesson but will teach them so much; they will have hearts full of grace and mercy.

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  8. Rachel, I love you and your family and my prayers are with y'all daily.

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  9. sweet, sweet children! hugs, kisses, prayers and love!

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  10. I am wiping away the tears as I write this because it brings back so many memories. The first tears I cried on seeing that one of my children was going to be "different" were tears of fear for my other children. We were so very fortunate that her disabilities were purely physical but at the time the future was unknown and frightening. There were lots of nurses, therapists, appointments and surgeries. Through it all my other two children learned compassion, empathy and how to put someone else first. My oldest is now applying to nursing school. There is no magical advice I can offer, only to follow your instincts as a mother, which you are doing so beautifully. I think of you often and wish you a peaceful new year.

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  11. Rachel--I think of you often too, Rachel, and hope the sadness, grief, and difficulties become lighter this next year. You really are such a good mother. I don't know anything about Brandon's parents, but they are not you and Brandon, and if Brandon has one nth of the fortitude, endurance, and tenacity you appear to have, your children may not have the same experience he had. It's true they won't ever get to be as innocent about life as they were before, but you and Brandon will be good at helping them play the cards that life has dealt all of you, which is really the best any of us can do for our kids. I hope you guys have some pleasant moments over the holidays, and that Baby gets easier for all of you to hold--Sara

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  12. Thank you for sharing this, Rachel. Every time I've read one of your updates about Eleni, I've wondered how Aria and Liam were doing. Much love to all of you.

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  13. I keep thinking of you. I'm missing the words to describe how I feel. I wish all of you the best.

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  14. Thank you for sharing so openly with us. My heart goes out to you and your family. I hope you will keep finding strength in yourself and each other.

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  15. Rachel, Thanks so much for courageously sharing openly with us. You and your family are in my prayers. You are strong & your love guides your children. Hugs to you and wishes for a wonderful 2016

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  16. Rachel, Thanks so much for courageously sharing openly with us. You and your family are in my prayers. You are strong & your love guides your children. Hugs to you and wishes for a wonderful 2016

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  17. This is the first time I have commented, but I have been reading your blog for some time now, and praying for your family. Besides praying for you to have strength, wisdom, and encouragement, I pray for God to bless you and your family thru Eleni. I have been a volunteer at Joni and Friends Family Retreat where I have seen the struggles families with disabled children go thru but also the blessings. I don't know if there are any Joni and Friends Family Retreats anywhere near you (I know they do have them internationally) but if you have a chance to attend one or something like it, I encourage you to do so.

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  18. You are such a strong brave woman.

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  19. It took a lot of courage to share this. Thank you, Rachel.

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  20. Thank you for sharing your innermost thoughts and a bit of your life with your dear sweet children. What a blessing you and your husband are to them. To only have a bit of the strength you have, the love that is so obvious in your day to day - moment by moment life. What encouragement has grown in you and to share with all of us is appreciated beyond any words I can type out. My husband and I will pray Phillipians 4:6-7 asking God to provide you with everything you need, giving thanks for all of you. We will ask for His peace, which is so great we cannot understand it, and to help us keep our hearts and minds in Christ Jesus. For we are here for God's purpose and thank you for being such a blessing to me this morning and sharing your heart.

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  21. Thanks for opening up to all of us. You are being open with your kids and I think that is good, it could very hard on them if they found out other ways. We are all praying for all of you and especially the little ones. Keep your chin up and NEVER give up, life is surprising you just never know.

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  22. I'm adding your big kids to my prayer list! Thank you for candidly sharing about your sweet older ones. Having Eleni in their lives will most likely shape them into super compassionate adults (although I'm sure they were headed that way already!). Hugs to you all!

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  23. Rachel, you are such a strong and brave woman and a wonderful mother. Please know that you and your family are in my prayers this holiday season.

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  24. I too have been wondering about Aria and Liam, and I'm grateful to hear a little about them. Once again I am in awe of you as a mother. I hold you and your family in my heart. Much love to you all.

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  25. Gosh Rachel you got me all glassy eyed. All I can offer you is love love love xxx Clare xxx

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  26. I don't always comment but I am always praying for you and your dear family.

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  27. Rachel, I wish I were half as articulate as you so I'd be able to tell you how much this post moved me. You and your family are incredible. Your children, all of them, are beautiful. Sending all of you love and prayers for inner peace.

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  28. Your honesty is inspiring! Your bravery in sharing is enlightening. You remind me that, in life, things could be more tragic than I ever imagined. God Bless your family.

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  29. Amazing post. Thank you so much for sharing your heart with us. I have been thinking about your older two for months. I'm so glad they hold her and love her. Blessings on you all.

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  30. Thoughts and prayers are with you and your family and I hope writing from the heart as you do helps sort those many emotions you so eloquently share. I read every one of your posts but have no words that seem enough in response and so this is my first comment. Your family's love for each other shines through the photographs which are truly beautiful.

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  31. Dear Rachel, you know how sorry and touched we all are when reading your posts about Eleni. I think it's very important that you have shared your family's story. I just can't imagine how you find the strength and time for everything but then thinking a little bit more I understand that your beautiful family gives you the strength. Take care of yourself. Love and blessings.

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    1. Yes, my family does give me strength! Not just my children, but my mom and my mother-in-law and my many amazing, real-life friends. God has provided so much support for us in this challenge. That doesn't make me welcome the challenge, but I am eternally grateful for all this love that surrounds us.

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  32. You are doing a wonderful job with the hardest task ever. I check in here often and am glad your older children are okay. They are learning hard lessons, but they are going to be wonderful adults some day, filled with compassion. You are doing all the right things for them. Blessings to you and your family at this joyous time of year. I will continue to pray for you all.

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  33. Being a sibling to a child with deficits can be so, so hard. I was an adult when my brother, who has significant cognitive delays, was born. My sister was born two years later. Now both adults, my sister bears the brunt of managing life for my brother. She's starting her new marriage & has two baby girls, but has to continue to manage him too. It's definitely not an easy road. God bless you and your family on this road. You're a good mom.

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  34. Thank you for being so brave to share so openly and honestly. It's hard to read your posts without shedding a tear for how much your family is hurting. I will continue to pray for more and more positives for you guys.

    As hard as it is, I believe you are doing the right thing by not hiding your grief from your children. Because life is unpredictable, and it's important for them to learn that crying is ok. Processing things is ok. Grieving is ok! Living a fake life where everything is buried and not discussed is not ok and causes no end of mental health issues.

    Keep taking one day at a time and as hard as it is, keep choosing hope. For a life without hope is no life at all. You are doing amazing, keep up the great work.

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  35. My computer must be acting up, because all of a sudden the screen got really blurry. Thank you for sharing with all of us. I really hope that your family has a peaceful Christmas and New Years. Wishing you the best in the new year. We are all thinking of you.

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  36. Yes, prayers, hugs, good thoughts and more hugs your way. You are a strong family and will make it through.

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  37. I am so glad you got this out of your head, and shared it.
    It is helpful.
    I am sorry to hear Brandon went through a traumatic family event. It does leave scars. I am so sorry for his brother, and the ruin the accident created.

    Things are different now, especially with the therapy that you are getting and your adorable sweet kids. Oh my they are so good.
    You are not alone. We are here to support you.... and remember there are so many battles in life. Focus on the time you have with Eleni together all of you now. Every day is a blessing that we are together, sharing and helping each of us grow differently.
    Liam may grow up to be a scientist, or a neurologist. Aria also has paths that opened that she never knew. They will learn a lot. All of you do. You are learning all of the things you never wanted to know, but now there you are.
    I love all of you so much, I have you in my prayers daily. I know anyone here that has commented or reads your blog would drop everything to hold you up, Rachel, so just continue to share.
    Eleni is beautiful. Your kiddos are just precious.
    Have a calm peaceful Christmas.
    Never forget you are loved so much

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    1. I agree with everything Rosemary has said here, particularly the parts about how much we love you and your family and how Aria and Liam will be impacted in a positive way. My brother is 18 months younger than me and his multiple rounds of childhood cancer (which lasted all 4 of my high school and some of my college years) felt devastating to walk through. Fear for his pain, the threat of death, and loss of my parents attention (they took turns living at the hospital) hurt so badly. But looking back on those times, I remember so much more than the fear and pain. Playing mancala with him in his hospital bed, Christmas mornings with his bald head and our silly dog; pushing his wheelchair across campus his first day back at high school; my dad whispering that if God were to take him to Heaven he would be at peace; the stuff that went on at band, and meeting my boyfriend (now husband). Even my sister, three years younger than him, remembers so much good from this time. I completed my degree in Child Life Psychology (to work in a hospital with ill children) and my sister recently started her first job as a nurse. As someone mentioned above, these are surely not the roads we ever, ever wanted travel. But speaking as a sibling, there will be so much light for your little ones!

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  38. Love seeing all three of your children together. Loss of dreams is hard for all of us. I see their love for their sister even if Eleni is different than what they hoped for. Grieving is good so is choosing to see a reason to hope. Merry Christmas!.

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  39. Such a lovely blog post. Glad to see you are all working through it, and I hope you all have a lovely Christmas together.

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  40. Thanks for sharing about all your beautiful children. Holding you all and your husband in my heart.

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  41. Thank you, Rachel, for sharing. This post is a beautiful and poignant picture of your family. We are continually praying and rooting for you all. Xoxo

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  42. Your posts are so beautiful in spite of your indescribable pain. I'm so glad for our sake and yours that you do attempt to put your story into words.

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  43. Our hearts ache for you and your family. Please know that we are all sending you love and courage and strength.

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  44. My heart is full for all of you as I read your post tonight and the beautiful comments of so many wise and generous readers. I know that none of us ever choose to be brave and strong, but it's so amazing that God supplies just that amount of bravery, courage and strength at the exact moment we most need it. You encourage us as you share your journey and insights and reality. Hopefully we will also encourage and care for you in return. You are dear and precious as are each of your children and husband. Prayers, blessings and peace to each of you. Merry Christmas

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  45. Good job on this post. Keep writing. Like quilting it is our therapy. Walking through the fire to get to the other side is the only way...for all of us. The pain is so raw and unforgivable...From the outside in... others see how well we are doing. From the inside out...it is a different story. xxoo

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  46. Dear Rachel my heart goes out to you and your family. Thank you for your beautiful, honest and loving words. You are an inspiration to many although you may not feel it but your strength gives encouragement to carry on through life's challenges and to embrace life's blessings. Thank you.

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  47. Rachel ~ what brave people you all are. To raise children who can express how they feel and what they need, to cope with tragedy in their lives. I'm certain that if all children were able to do that I'm sure we'd have a much healthier society. My heart goes out to all of you in your journey with Eleni. I'm sure it will be hard, but you'll have your sweet moments too. I don't have the same experience as you but I have had a very large loss and it truly changed my life. I admire your grace and strength. Sending love and light ~

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  48. Thank you for sharing such a personal journey with us. Love to you and your beautiful children.

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  49. Your strength is so inspiring, Rachel. Thank you for sharing your story. You and your family are always in my prayers.

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  50. You are the most wonderful mother Rachel. Eleni's first year has been heartbreaking for you all. My heart goes out to you! If I may add something to what Danielle said... it is mostly because Aria and Liam are such wonderful young people that they will be able to build positive experiences out of this.
    Our children grew up best friends with my friend's family whose oldest child Sean had severe physical and mental handicaps. It always seemed to me that their two children were much more empathetic and caring than the average child. Sean affected my children that way too and I know my kids are better people for having known him.

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  51. You and your older kids may not see it now, but in the future will realize that Eleni is the greatest gift to your bigger kids. We have three kids as well and the youngest (by 10 years) has significant special needs. Our older kids, who are now in their 20s adore their little sister (and are adored back). Our youngest has made our older kids accepting, kind and empathetic, all wonderful qualities. The older kids have also learned that the world doesn't revolve around them, something that a lot of kids this age haven't learned. Happy holidays to your whole family.

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  52. I admire your strength and honesty . Somethings will never make sense. I will pray for your family.

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    1. Thank you, Karen. I think you are right, that some things will never make sense. Hopefully though, the whole story will make some sense someday. I'm trying to believe that in the end it will be a story worth telling. Maybe though, maybe, a story worth telling does not always make sense? Hmmmm....

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  53. Thank you for opening your heart, and your family life, to us. I feel honored to be entrusted with these tender truths. Each member of your family is in my prayers.

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  54. Thank you for sharing. Love and hugs!

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  55. positive associations
    may it be so Lord

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  56. Your words touch me in so many ways. Yes, your words and thoughts enlighten and touch me every time. You will probably never even know the good work that your words have done for others who are in need.

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  57. What a beautiful, heartfelt and touching post. It is hard to know the right words to say but the honesty you share with us is so important to everyone who must cope with this kind of tragedy. The loss of innocence in our young children is painful to watch at the best of times. This must one more hurt on top of so many you are experiencing. You, your children, and your husband are in my prayers.

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  58. Rachel, you and your family are amazing, you especially. This is a very moving post - at once insightful and educational for us who do not have to deal with such difficulties. Your blog is one of the best as it shares your journey in a way that helps us all, and provides creative stimulus. I hope you give yourself credit. Few people could do what you do. You are quite an inspiration.

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  59. Dear Rachel, I have only found your blog today as I'd like to learn how to quilt. I was so touched by your honest and moving post of your family as you have come to terms with Eleni's difficulties. I do wish you all a happier 2016. You sound to be an amazing Mum.

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  60. I cried all the way through this post. Thank you so much for sharing. I feel so glad to see your heart here. Praying that 2016 is full of little moments of beauty and miracle, and the courage to enjoy them. Much love. xxx
    And it's so special to see the flower quilt in the background! Such precious pictures.

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  61. You are doing such a great job, it's hard to go through. My younger sister has CP and it caused much stress through my childhood. This siblings post strikes right at my heart. I remember being terrified to hold her but my mom would strap my sister in her car seat and I would rock and read to her, it was the only way I could really interact. As a kid it's hard to process the magnitude of the situation, my mother was very clinical and honest about answering my questions and this actually provided me some sense of relief knowing, rather than guessing. Hearing the mother's side of the story, it must be hard putting your fears into concrete words. The one thing I wish my parents had done was put me in touch with a counselor when I was younger to work through and process everything in my life. That was a good move for your kids :) Even still with a positive outlook and caring parents, I did turn out ok. Keep leading with your heart.

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  62. Thanks for this post, so honest and full of emotions. And thank you for the beautiful pictures of your beautiful children.
    Groetjes
    Annemieke

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