Sunday, October 4, 2015

Eleni, 7 Months

 Eleni, 7 months

This month baby is photographed on Maker available at Fat Quarter Shop! Watch this space for a giveaway soon.

Let's start with my gratitude for your kind concern this September.  We are home from the hospital now... for the second time in two weeks.  Eleni has had some sort of virus for about three weeks now.  In retrospect she started showing signs before we departed for Chicago.  I wasn't sure what was going on until she really crashed one night and we had to take her to the ER.  Things go from "maybe" to "bad" so fast with her!  We spent two nights in the Chicago hospital, caught our flight home and then ended up back in the hospital in our hometown less than a week later.  This last time we were discharged with oxygen, which Eleni has continued to need every night and sometimes during the day over the last week.

Yep, we have so many machines in our house, and now oxygen, plus state-funded nursing in the home a few days a week.  It feels like everything but the doctors!  I'm thankful that these things allow us to be home, but discouraged to need them so.

Eleni, 7 months

Eleni, 7 months

I'm not sure what progress to share for Eleni this month.  Her ABM lessons in Chicago with Marcy held so much potential, but Eleni was unwell through half of them and missed several entirely due to hospitalization.  She's really been sick since then, often feverish, rashes coming and going and having frequent muscle tension fits, which are similar to a seizure.  When she's feeling poorly, her muscles are extra tight, discouraging movement.  I guess progress is too much to hope for given these challenges.

Oh, and we missed our appointment with Dr. Zelinsky, the optometrist we see in Chicago who told us to do the spinning.  I was so looking forward to seeing Dr. Zelinksy again, but alas.. the hospital.  After skyping with the Dr. last week, we've been using her special prism glasses in a new configuration.

Eleni, 7 months

I've been meaning to show these to you.  You can see from the side that the glass has a thicker part and a thinner part.  The glasses are prisms that bend the light as it enters the brain through the retinas.  We rotate the prisms in the frame, as instructed by the doctor, to effect her brain in different ways.  Dr. Zelinsky, who specializes in recovery from brain injury, uses prisms to stimulate non-image related visual functions.  Light coming through the retinas programs the brain in a variety of ways, effecting circadian rhythm, balance, digestion, hormones and more.  Although Eleni's brain understands little to no central or peripheral vision, her retinas are still taking in light.  We hope that by stimulating the non-image related visual functions, her entire brain health, and eventually her vision, will be improved.

Eleni, 7 months

Well, friends, September was not a good month for our family.  I know I started it off with a negative attitude, frustrated to mark the halfway point of Eleni's first year with so little gained.  It was painful to "celebrate" my birthday and to fail again and again at attempts to have fun as a family, as a couple, as an individual. We went hiking in the mountains for my birthday.  Eleni wore this sherpa hat I made for her before she was born.  Before.

Eleni, 7 months

In September we also had appointments with neurology and developmental pediatrics, both of which I dreaded for months in advance.  As it turned out, neither appointment was as traumatic as I anticipated.  Sure, both doctors had little positive to say about Eleni's prognosis, but I was prepared for that.  Neither made dire predictions, like that she'll never walk or talk or eat, but they didn't have to say it.  At seven months old now, she still cannot roll over, cannot sustain her head off the ground at tummy time, has never smiled, does not track objects, does not use her hands, has never eaten anything by mouth, makes very few sounds, etc., etc.  It doesn't take a doctor to raise a monster red flag here.

Eleni, 7 months

Please forgive me for bringing the sad, but I'm feeling the need lately to make sure people know how poor her prognosis really is.  It's devastating to be in this position as a parent, truly devastating.  All to often well-meaning folks offer encouraging words that reveal their lack of appreciation for how serious Eleni's disabilities are likely to be.  I appreciate the sentiment, I do!  But, it's rather stomach churning to come to grips over and over again with our lurching reality.  And to do it feeling alone, without the company of those well-meaning folks, who get to move on with their day rosy glasses firmly in place.

No one wants to be the dasher of rosy glasses.  In fact, I've considered donning a pair of my own.  But the stakes are too high.  I need to be in touch with reality in order to help my family.

Lately I've been thinking more about how to take care of myself and the other members of my family in our day-to-day struggle.  This turning away from focusing everything on Eleni was inevitable, as it was never sustainable, but it does feel like a miniature giving up.  It really is.  There are simply not enough resources (mainly of my time) to go around, because Eleni's needs are so astronomical.  To help anyone else, is to help her a little bit less.  No matter what it breaks my heart.

 in the midst of the flood

This weekend South Carolina is seeing a record amount of rain.  Flooding and mayhem reigns.  An ominous thud signaled the sound of a large tree falling, uprooted in soggy soil, just minutes ago as I typed.  Our little pond usually nestles far out of sight, behind that line of trees.   It's risen over ten feet, fully into the pasture over soft, safe grass.  Like only children can Aria and Liam defied the chaos, took their kick boards out to the pasture and had a rousing good time.  I think it's that childish ability to live in the moment that I need most to survive all this.  The future is not rosy.  The tragedy is real and the silver lining so extraordinarily thin.  If there is anything, anyway to enjoy the now, that is where I need to be.

109 comments:

  1. So sorry - hopefully you can find a way to separate yourself from the pain for a short time. It won't hurt any less, but the focus may find some joy somewhere else briefly - prayers for all of you.

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  2. I'm sorry things are so rough for you all. Hugs

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  3. Thinking of you in here in Ontario, Canada. This is your space and you should always be able to express how you are feeling. It is a tragedy for everyone involved and I am so very sorry. This might be my first comment but I've been a follower since around the time of Eleni's birth, and I do often think of you. I do hope that in the weeks ahead, that you may find a bit of peace in the now.

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  4. Taking care of you and your other family members is a great goal - and it does not mean you love the little Sweet Pea any less. Prayers always.

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  5. If only there were two of you or double the hours in a day... I'm so sorry to hear the news about Eleni, but I'm happy to see the photo of Liam and Aria. I'm glad that you feel safe enough to express your feelings to us. Don't beat yourself up too much. We all know that you're doing the
    best that you can. Just know that you're doing more than most of us could.

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  6. I love the picture with Eleni wearing the hat you made for her. The photo gives the appearance that she is looking right at you. Definitely a keeper!!

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  7. Hang in there girl! Do you have a support group you can be a part of? I am a teacher and I have worked with kids with CP and other issues. It's hard. It's a tragedy. It's a big loss and you are understandably dealing with grief. Be good to yourself. I will continue to pray for you and your family. I think you are very brave to be so honest with the world and I am sure you are helping others in the process.

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    1. Thanks, Natasha. I actually started going to counseling for myself last week. I am blessed to have a deep circle of close local friends who have hugged and cried and listened with me the last 7 months. That's why I didn't feel the need for therapy. I decided to go ahead and try counseling just in case it helps. Appreciate your concern!

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  8. Tell it like it is, the bottom line for you--this is one way to just let it all out, in print, and have us witness it. Sometimes when I'm overwhelmed about my own child's situation, I don't want words of encouragement so much as someone to really hear what I'm saying, to witness it and really Get how hard, discouraging, painful it all is.
    I feel a sense of kinship with you that it's hard to feel with people who have not suffered with their children. I think of you often, and will say to you what someone said to me recently, that they were praying for me for "peace, comfort, and endurance". Sara

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  9. Reading your words, I feel a little of your wrenching sorrow, and my heart breaks for you. I do understand what you mean about feeling alone int he midst of a sea of words of well-meaning encouragement. Sometimes what we need is validation in our despair.

    I am praying for you, for strength to make those difficult choices about how to divide your limited time and attention, and for your beautiful baby girl. Just praying.

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  10. Praying for peace, endurance and balance as you give your time out to all of your family. I hope there is someone that gives you some respite care so you can go out as an individual or as a couple. We all know what is to grieve the loss of a dream and the hard things in life. Hope Eleni is feeling better soon.

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  11. Praying for peace, endurance and balance as you give your time out to all of your family. I hope there is someone that gives you some respite care so you can go out as an individual or as a couple. We all know what is to grieve the loss of a dream and the hard things in life. Hope Eleni is feeling better soon.

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  12. Praying for peace, endurance and balance as you give your time out to all of your family. I hope there is someone that gives you some respite care so you can go out as an individual or as a couple. We all know what is to grieve the loss of a dream and the hard things in life. Hope Eleni is feeling better soon.

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  13. I'm crying with you (literally) and praying for you and your family fervently. There is a way and you will find it - you are resourceful and a Mom - stay strong .. . . . . .

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  14. Thank you for sharing your heart, as difficult as it must be. I pray that you continue to seek and find joy in the small things and not be overwhelmed by the enormity of what you're facing. Your broken heart is not unseen or unnoticed by your Father.

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  15. Grief...so uncontrollable..so sad and so real...Keep on keeping on. You will never be the same,
    You are the gift to your family...xxoo

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  16. I often think of you and Eleni and your family. I wish I could convey my heartfelt prayers and wishes to all of you. My baby sister and brother in law are raising two children- a 3 year old, healthy rambunctious girl and my nephew Isaac who is 19 months old with Spinal Muscular Atrophy type 1. It is a terminal genetic disorder that no one in our family had heard of until his diagnosis. He has outlived the doctor's initial predictions and we are thankful for every single day.
    I see so many similarities between you and my sister-your strength, your determination. I am continually in awe of your (and her) ability to convey with complete honesty and rawness what is going on in your day to day, your heart, your mind. You will find a way whether day to day, hour to hour or minute to minute every day because you are strong-even when you do not feel like it. Many prayers for you and your family and for Eleni!

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  17. As always, you beautifully express your emotions, your hopes, your dreams, and your truth. I'm happy to hear that you are getting counseling. I have found that having a therapist is self care that I NEED, and no indulgence (if can feel that way if things are going well on the day of therapy). But I have been able to grow in so many ways through that. Your loss and grief is not something that all the well meaning people in the world can take away. It is real and you need to know that you are never giving up on Eleni...taking care of yourself and the rest of your family IS caring for her. Loving her is your biggest task and you do that SO remarkably.

    Lord bring Rachel peace and comfort as she continues on the wise path you have guided her to.

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  18. It's so, so hard. I've been there with my cp son. You are an amazing mother and wife! And in the words of Jeffrey R. Holland, "Be peaceful. Believe in God and yourself. You are doing better than you think you are."

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  19. Praying for you and your family. Praying that God's will in all of this will be clear, and that clarity will bring some peace.

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  20. Prayers for you and your family. That's the best we can all offer....prayers.

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  21. Prayers for you and your family. That's the best we can all offer....prayers.

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  22. Oh my heart aches for you- know you are loved and prayed for- I know it is hard - terribly hard- devastatingly hard - remember- there is a sacred beauty with tragedy - don't forget - it will get you thru.

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  23. I'm here for you, to listen and care.

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  24. I'm sorry Eleni has been so sick and that it impacted her last round of treatment. How you're feeling is understandable given the circumstances, but you've put in a yeoman's effort for a very long stretch, which is commendable. Even though Eleni may never do all of the things her siblings can, certainly the extra attention and intervention you've been able to give has helped to improve her smaller successes, and I hope you can find the balance you all need going forward. xx hugs xx

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  25. I wish I had great words to say to you... but I'm not very good at that. I thank you for your honesty to us and to yourself. Keep doing what you can and it will be enough. Know that I'm sending you all the love and prayers, and we're rooting for you guys! And, next time you're in chicago and you need a hug let me know- we're not far. (also the docs at Lurie's are great and have helped us so much - I imagine that's what brought you to chicago?)

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  26. I am so sad to hear about it, but I think you are one of the strongest woman I know! Thank you for sharing and if anything helps to help you, just do it! It's so good, that you have such a lovely and also strong circle of friends and family around you and I'm thinking of you, Eleni and your family - sending you power and all the best!
    Hugs from Germany, Rike

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  27. Thank you for letting us know where you are on your emotional roller coaster. Your discouragement is palpable. I get it. How could you not be overwhelmed, doubting progress, wondering about priorities. Hugs to each of you. Your hopes were so high and miracles haven't happened. Hang in there.

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  28. Thank you for being so truthful, for not wearing rose colored glasses. Any good parent is devastated when their child is sick, or hurting or injured. It's just your Mother Heart. You've had devastating news and a really bad month. Understandable to be sad and let the world know. I hope there are some little victories, even just happy times with your other kids, to sustain you while you seek support for Eleni. Hugs!

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  29. I think of you often, you are in my prayers. Though my problem was my own and not in anguish over another so dear, I found immense relief and healing in therapy. To cry, to rant, to rail, to be able to voice my thoughts and emotions without fear of judgement or reprisals was cathartic and of profound relief. May you find comfort.

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  30. I think of you often. I started following your blog as I love what you do in patchwork and I'm really sorry about the bad state of health your baby is in :-( Best wishes from the French Riviera <3

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  31. Thank you for your honesty, Rachel, I hope in some way it's a release to record what you are going through here. You are in a situation that very few people experience and that makes it even harder. All you can do is your best in any moment and know that you are doing so, and I hope you can take a small comfort in that. You are very strong and brave and someone (most likely several someones) are needing these words you have been writing. I'm glad you are taking some time for yourself and your family, I know the "now" is important, but so is the long-run, too. Lots of love to all of you x x

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  32. Oh Rachel! Deeply hurting for all of you. Hang in there. The Lord shall give you strength.

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  33. It is amazing that you can blog about this. Many would have just disappeared. I hope at some point in time you will be at a point with Eleni, where you can look back and say 'wow, look how far she has come'. My mother used to say 'and this too shall pass'. I pray that is true for you.

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  34. How can you give to Eleni over and over again when you have wrung yourself dry and are empty? Looking after yourself IS looking after her. If you fall apart, you can't help anyone. And your other children need you too, as you know. Rachel, you have been so strong through this and part of that strength has been in being vulnerable and not shying away from showing it. The way you feel this month is a sign of your strength, not your weakness, and of how much you have given to Eleni and everyone. I speak as someone who spent weeks and weeks unable to get out of bed and look after my children following severe post-birth trauma. I have had to learn the hard way to be kind to myself, and that my kindness to others is bred from that, not from martyring myself. Tell yourself you are as wonderful as all your blog commenters say you are, and believe it, for it's true.

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  35. I'm so sorry. It sounds like you have everything in perspective. Sometimes all you can do is be honest -- about life, about how it makes you feel.

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  36. I'm moved to tears. I've often wondered how you could hold it all together with the demands of Eleni's difficulties and two other children. I hope you find ways to nurture yourself through all of this. I'm thinking of you .

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  37. Rachel, I can't even fathom how difficult these last months have been for you and all of your family. I do so admire your strength and determination. You may not ever be able to change Eleni's prognosis and there are certainly ups, downs, and just awful days, but I feel certain you will find your way to peace and happiness with all your family.

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  38. You don't know how often I think of you and your family. It sounds selfish for me to say that your sharing helps me, but there it is. We are in the midst of a completely different kind of ongoing heartbreak. Your honesty strengthens me. Today I am wrapping you in a big prayer hug and sending you heartfelt thanks.

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  39. Know this is so tough for you. We have a 5 yr old in our family who is just now able to sit up on his own and say a couple of words. Small steps are like great miracles. It is my prayer that you can experience some of those, if only small steps in learning how to better cope with it all. It is all consuming, I know.

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  40. I have no experience with what you are going through, but my heart aches for you as you struggle with this. Balance is not about giving up. Balance is living for you, Eleni, and your family. You were the first family I thought of when I read about the epic rains in SC, hoping that you didn't have an extra burden placed on you by having to evacuate. I am truly thankful that so far only trees are falling.

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  41. I'm so sorry you and your family have to deal with this. I know how excited you were about adding a child to your family and I can't even imagine how devastating it must be to have it turn out this way. It's completely normal to be sad and to feel like life is a struggle. Eleni is a beautiful child and I wish I could make her healthy. I think you're doing an amazing job though, the very best you can give the tough hand you've been dealt.

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  42. We continue our prayers for you and your family. You are loved.

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  43. My prayer is for you to have the strength to do what is today, the peace that passes all understanding, and rest for your weary soul....with all my heart.

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  44. I have no idea how you feel, but I send you strength and concern, my prayers and support.

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  45. I too, think of you through my week. Isn't it odd how so many who started following your escapades in sewing, now carry you and your family in our hearts? It is not by accident that you are covered in prayer. The pain is real. The grief is real. It cannot be all positivity and hope and rose-colored glasses when you are in the throws of day to day life with a person in need of such intense care. Yes, you do need to take care of yourself and your other children and your marriage too. Eleni may not know if you put her needs on hold on occasion - but everyone else will know and flourish (even/especially yourself) if you put THEIR needs first on occasion. It is not easily done. Be easy on yourself - you have such a heavy load as you try to redefine your life "after". Much love & prayers for peace, strength, endurance, filling, rest, and joy in the moment.

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  46. Thank you for sharing your heart, and letting us help carry this with you! I hope we can all help lift you up during the trying times. Eleni is a beautiful girl. :)

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  47. I saw somebody above who said they carry your family in their heart, and I think that captures what I want to say. I carry you, Eleni, and the whole family in my heart, and hope for you all to find the balance you seek between acceptance of what is real, and striving to do all you can to help Eleni be the healthiest, most independent person she can be, given her very real medical challenges. I think you are doing an amazing job. I think being discouraged, depressed, having to re-balance... all of that is a necessary part of this life you are living. But it is only part of your world. And you will find moments of joy and family harmony as well. Even though you are 7 months in and that feels like a long time, it is a short amount of time in the overall life of your family, and you still have time to find (and re-find) your family's balance. Sending you love.

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  48. Rachel, I want you to know I can relate, completely, to the "don't you understand how devastating and life changing this diagnosis is?" feeling. My husband has advanced stage kidney cancer and his prognosis is very poor. We're still raising a teenager who's college hunting, working, trying to have some kind of life, but it's a daily struggle and really our friends have no idea what any of this feels like. They don't get how serious this is, how life shortening, etc. So, not to take away from your tragedy, at all, but know that there are others out there with their own tragedies. No one can feel like you or completely understand your situation, but if you can try to connect with people who have experienced loss and grief. I promise you, it won't be what you feel exactly, but it will be the closest thing you can get. Big huge hugs.

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  49. I am so sorry. Many here have said take care of yourself. I echo those thoughts & the love, prayers & acceptance of now. Grieving the before too.

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  50. We never truly know what someone else is going through. I've appreciated your posts about Eleni and how you're managing. I appreciate your honesty and admire the guts it takes to be vulnerable about your hopes and disappointments and loss. Such loss - of hopes and dreams and life with a new baby. There are really no words to convey all of it and I pray for you and your family each time I think of you and always when I see posts from you.

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  51. My heart went out to you this morning when I first read your post. I think about your family quite a lot, which probably seems (or is) odd considering that I know you only through your posts and you do not know me at all. But like everyone else, I wish I had something useful to offer. I have only a few words and the hope that they will be useful to you. Can I say that a so-called negative attitude isn't necessarily negative? There's nothing wrong with feeling disappointed, discouraged, angry or whatever -- I think you probably have to feel these things in order to deal with Eleni's evolving needs in an honest and healthy way. So in my book you, Rachel, do not fail at anything; I see you trying and trying again, and that willingness to keep trying is the success. You're courageous, and if you have moments of despair, that doesn't make you less courageous, it makes you more so, because you keep pulling yourself back up to persevere. I feel grateful to you for sharing your experiences and inspiring me with your example.

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  52. Thank you for the courage to share and let us into your lives. The need to take care of yourself, and other family members speaks to me. Thanks

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  53. You and your family are in my thoughts and prayers!

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  54. I wish you and your family and of course most of all Eleni that this month will be better than the last one for you!

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  55. Rachel, I read your blog regularly. My heart goes out to you in your journey with Eleni. Accepting disability is a constant struggle, and I admire your courage. I have a twin sister with developmental disabilities, and I have been grieving all of my life: why am I the "normal" one? why won't she ever be able to do everything I do? There is also the resentment, which thankfully diminishes with time, and I pray it will for you, too. Resentment took the form of, I can't do what I want because of you, you're taking time and attention away from me, why do you have to be my sister, etc.. The pain never goes away, but it certainly does soften. Acceptance is the way toward true peace, and you are on your way. Take care and let God guide your path.

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    1. P.S. I absolutely LOVE Eleni's cool glasses! What a cutie!

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    2. Dearest Rachel,
      You have impacted my life in ways that I cannot express - but the word gratitude does come to mind regularly. As were so many others, I had been praying that your precious girl would have made remarkable progress by now. It is beyond sadness that she has not and may never. Your strength and honesty is both extraordinary and heartbreaking and I am compelled to let you know that I will continue to keep you all in my prayers. And especially you Rachel, because YOU are the heart of your family. Please find ways to nuture and care for yourself daily.

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  56. Greatly appreciate your realness and display of raw emotion and feeling. Prayers going up for you always.

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  57. Thank you so much for sharing Eleni's status and your family's life with us ... I wondered what it took for you to write this post, and the thought overwhelms me. My heart aches for you that you and Eleni and the rest of your family should have to experience this. I am so glad you have friends who are supportive and who understand how they need to be for you. Sending love and saying prayers for the benefit of you and for your family ... one mother praying for another. I will echo what others have said here: Do take care of yourself, and don't feel you are being selfish when you do.

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  58. My brother has a disability and rosy ads and inspirational stories about people with disabilities overcoming adversity, blah blah always rub me wrong. I mean, sometimes I appreciate the optimism and I know that people mean well, but sometimes I think it trivializes the actual struggle and also undermines the actual moments of joy you can have while accepting the reality you are living with, and that it's ok to just breathe sometimes and feel really angry that it's not fair every simple thing is a struggle to overcome adversity when so many people get to just be...

    Also, sometimes for me the hardest part of grief is managing everyone else's grief about my situation! And explaining to them over and over.

    So sorry for what your family is going through. As a sibling of a child with disability, I went to a few counseling sessions and wish I had gone to more. But my parents weren't as emotionally supportive and aware as you are, so your kids are in a totally different situation.

    Blessings.

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  59. My heart aches for you. I have been following you blog but never posted. I know I don't have the words to make anything right or feel better for you and your family. Just know that people all over the world (including me in Australia) are admiring your strength, your love and your compassion right now. Your doing a fantastic job.

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  60. Reality is a beast, isn't it?. But the energy required to buoy everyone else's optimism is just too much. Being real wastes less energy, I think. And you and your family need every speck of energy you have for each other. Hugs.

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  61. This is so very hard, Rachel. I appreciate your honesty and your grit. My heart has been breaking for you and your family. There are really no words for this, nothing that I can say that will change or lighten this terrible load you are bearing, but just know you are in my thoughts and prayers.

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  62. Hi there Rachel,
    I have been a longtime reader of your blog, and will continue of course! I enjoy the time you take to share with us immensely!
    I haven't yet commented on Eleni…this is not out of lack of love or caring. I have the awful habit of writing things that get misunderstood and are often taken the wrong way and I did not want that to be the case with you.
    Please know that my heart goes out to you and your family. I will keep all of you in my prayers(as you have been all the past year).
    Love,
    Quilty Huggs,
    Jacqueline
    snausages22@yahoo.CA

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  63. I think it's amazing that you are able to share your new reality and not try to cover it up for your readers. All we can do is pray that you receive peace in your struggles. Sending prayers and love your way.

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  64. Rachel, sending you prayers and encouragement. I appreciate your honesty, and I know you and your family are trying to faithfully do what God has asked you to do. I join all your blog readers in marveling at your constant love and care for one of His special little ones. I am glad you are realizing that you need to take care of yourself, too. (Quilting has always been a health-bringing creative outlet for me :-) and I imagine it is for you, too.)

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  65. I will keep praying for you and your family to have the courage you all will need for the future. You are handling it with such grace and that is most admirable.

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  66. I have followed your blog for a very long time, a time where we shared your struggle to get pregnant and the joy expecting your baby and the heartbreaking complications with Eleni. Although I rarely comment on blogs I often think of you and your journey through this difficult time.
    As a physical therapist I do understand the severity of what you are dealing with, Today I am relieved to see that you are also realizing how important it is to take care of yourself and your other family members. You are doing such an amazing job, and have really taken on the world to find the best way to care for Eleni, more than most parents would be capable of. But sadly, there are things you cannot overcome. It is so important to keep yourself, your family and your relationships healthy as well You are in my thoughts often.

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    1. I think you have expressed what I would have liked to have been able to say, perfectly.
      Beth

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  67. hugs sweetie. you are strong.

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  68. I am wondering if there is a support group for you so you can share with parents that are going through the same situations... the heartbreaks and the challenges... sometimes a support group being able to speak freely with others who totally understand your situation is one way of getting some positive reinforcement for what you are doing and possible some other new ideas of potential resources? And, in a support group, you won't have to explain what is happening, how you feel and the impact of Eleni's health on your life and family.

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  69. You are in my prayers, dear sweet teacher

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  70. I wish I could take away your pain and make your baby well. My heart truly goes out to you and your family. ♡♡♡

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  71. So sorry to hear that things have been going so badly! wish there was some way I could help you, I will pray for courage for you.

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  72. 81 replies = 81 friends
    I can't count nearly one tenth that many whom I hear from on a regular basis. It's both heart-wrenching and wonderful that you make the effort to stay connected to all of us, knowing we all care so much for you. It is also awesome that you can find time to keep quilting, so you have a passion to follow outside of the problems. You are doing your best in a very difficult situation.

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  73. Rachel, I am so very sorry for all that you and your family is (and has) suffered. I cannot even begin to fathom your grief, anger, and sense of helplessness. All I can do is say a little prayer, and share a little of my own faith as a way of a far-off hug.

    Our suffering can often feel so meaningless, but it actually can be transformative. When we unite our own sufferings to Christ's on the cross, we make a space for grace and love for God (and for others too) to grow in ways we never would have thought possible.

    Your writing here is so very important. Your agony, suffering, love and joy shine through your words with clarity and strength. Please know that we are always here to lift you up (even if it's just a tiny bit) with prayer and friendship. I will be sure to include you and Eleni in my intentions as I pray the rosary tonight. xoxo

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  74. I am so sorry for what you are going through Rachel, and I will pray for you and your family. You are very courageous to have shared with all of us how you feel. Glad to hear that you made the decision to go to therapy. I did the same thing when my daughter was diagnosed with epilepsy 24 yrs. ago. Every time I see Eleni, I see a baby girl with precious soul.
    Much love,
    Diane W.

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  75. Hi Rachel! You are doing an outstanding job. No, I know, I hear you. You couldn't get to this that or the other, you had a mean thought or two, or whatever. The task of being a parent, and a teacher from my perspective, especially a parent of a baby as non-responsive as Eleni from your perspective, is one in which you can always see places where you could do more, be more - say this, call that person, recognize the achievement of that other one, console, encourage, butt-wipe, ad infinitum (to infinity). But the reality is, of course, that we really can't. We give in, we have to sleep. And, all too often, the most dedicated and loving ones feel like they've failed, instead of looking at those things they succeed in every day, day in and day out, like getting out of bed! I know you're having a hard time seeing it, but your character, strength, and love is just amazing to me. I'm very glad that you are going to counseling because sometimes a person with an outside view, one who listens to you, can be so, so helpful. I'm very grateful that you have wonderful friends and family. A good counselor is something different from that, but a person who can have a very strong role in helping you be your best :) your outstanding best!

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    1. I just wanted to add that I just read Flo up above me and I really like and agree with what she says :)

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  76. I'm so pleased to see you still talking to us all out here on the interwebs about Eleni ... life is not a rom-com and you need to express the bad as well as the little wins. Keep talking, keep communicating to us when you can. We hear you, we send positive energy and hopes it makes an inkling of difference.

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  77. Oh Rachel I sincerely wish I could hug you and cry with you. Please remember you are not superwoman....it's entirely normal to have all these thoughts regarding your situation! All you can do is take things day by day...which is easy for me to say.
    You are an amazing Mum...never forget xxx

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  78. Oh Rachel. There are no words adequate really. But we're here, we're listening. Keep going mama xx

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  79. Reading all of the comments above, I think we are right behind you in your emotions. Grieving, disappointed, still in shock, just heartbroken. I have nothing more to add.
    My prayers continue for all of you, and for a miracle.
    I am pleased to hear that you have a medical professional coming to the home for a while.
    You are loved, Rachel.

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  80. It's no good my saying sorry because it helps no one - least of all you. I would say my prayers are with you but right now we need all the prayers we are able to conjure up. Our younger daughter - we have three children - has had Crohns disease since forever and the steroids she was given ad lib caused all kinds of problems. But now she has been diagnosed with something called PVOD which I didn't think anything about. The doctor at the new hospital (she was in for 8 weeks) told us it was rare even in the scope of rare diseases and also said it was not curable and I still though so - I have MS which is non-curable and 25 years later I'm still fine(ish). But what I didn't know was that it is always fatal and the mean time is 2 years from diagnosis. So whatever rosy glasses I had are well and truly off. I don't feel sorry for me but I feel so sorry for our Stacy and your Eleni. We will cope one way or another. You need help - real help - like the kind that comes in and takes care of Eleni so you can spend time with your other two and your husband and some time for you too. My heart hurts for you and yours as well as me and mine. Patti xxx

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    1. I hear you, Patti. The tragedy is so real, it's hard to believe. And, yes, let's do feel sorry for Stacy and Eleni. I do feel sorry.

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  81. Oh, Rachel, Rachel! You must be so exhausted and broken down. You've had months and months of non-stop heartache and worry. I hope you find your way to a more balanced place soon. Keep grabbing those happy moments when you can! Hugs.

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  82. Love to you and love to that dear wee girl. She is perfect and so is your love. And I'm so glad you are taking time with all your children and your fella too.

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  83. Much love to you Rachel. Wishing you the miracle of peace for your broken heart. I can't imagine what it must be like to have that sense of 'seasons' ripped away. The 'this is tough now, but I know it's just a season.' And instead you have uncertainty and grief. And, like you said, you have the now. And eternity. Even though it may be a way off, and take lots of practice, I do pray for joy that passes understanding. Thank you for sharing your heart with us. xxx

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    1. Jodi, you understand. Yes, that stripping away of "this too shall pass" is what really throws me into despair on the hard days. How to gain perspective, to regain hope, when for all I know it shall get harder, not easier; more disappointing, not less. I am an optimistic person by nature, but with this.... It may not pass. Or, if it does pass, it may be in an entirely tragic way.

      Thank you for praying for peace. I do need His peace. I also need to have faith in His promise to make beauty from ashes. I've never needed more faith.

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  84. When a friend was in a difficult family situation, I found a card that simply said, THIS SUCKS. They need more cards like that.

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    1. Also, have you ever looked up The Giving Keys? You can get it with a word on it that is something you need to remind yourself i.e. breath.....Once you find someone who needs it more than you do, you pass it along. They are amazing in my opinion.

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    2. YES, to the card that says THIS SUCKS! Exactly.

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  85. I can't pretend to understand the heartbreak and hope you must endure simultaneously, but I do want to thank you for sharing Eleni and being so honest. She is beautiful. And the fact she is so greatly loved by a dedicated mama and family, is self-evident.

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  86. I have a child with Down syndrome. I know how hard it can be dealing with the medical needs of a child while still trying to have something left for the rest of the family. My only advice is to try to be kind to yourself and cut yourself some slack. You aren't superwoman (much as you try). Your daughter is beautiful and will progress (no matter how slow it seems to you). At some point you will realize that she has done something that she couldn't do before. I hope the illness resolves quickly for all of your sakes.

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  87. Rachel,
    I've been following your blog for a while (a long while!). Perhaps this is my very first comment here, I don't remember.
    I read how much you desired this kid, how long you look at for her.
    I can slightly feel in my flesh how you feel. It feels like defeat, like a torture, a curse, like we don't deserve this. We always do good, why do we get this?
    I have myself 2 kids and both where born after the opposite of a dreamy pregnancy. I know how life can be fragile and strong at same time.
    I'm far away of being a contemporary perfect mother, I'm not able to do my best everytime but my responsability sense is high and my standards are high too. I hope my girls will be kind to me in the future, if they are not, they might be right and think they deserved a different mother but this is what they got. I know myself I did all I had at my reach to bring them alive and healthy to this world. My life is like any others life, made of work, housework, playground, dinner time, sleep time, etc. My routine repeats 6 days a week the same.
    In my mother tongue there is a saying: No hay mal que dure 100 años, something like "There is not curse longer than 100 years".
    I think Eleni deserves all the love you all can bring to her, all the devotion and kindness. Her condition is so fragile, it holds on threads as fragile as spider webs (they are strong at same time). She doesn't know who is she, but her body feels, her skin feels, she smells, and she knows for sure when she is safe.
    I think myself she can't last long. Life is strong we have to remind ourselves nature is wise.
    She's not a defeat, she's not a curse. She might be just a spark, a pause, a breath.
    Hope my words are not rude, I apologize if they do. I apologize as well if there is any spelling wrong, english is not my everyday language.
    Hang it there. It can't last too much. I feel relieved you have help and people close around you. Keep yourself safe.

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  88. I sent you a big hug from over the ocean, if I could I'd do it in person. I understand your explanation on how you feel if you are taking care of yourself and your family and less of Eleni, but it is your survival and if you and your family (relation) is strong she will benefit too.
    Thanks for the very clear and honest post.
    Groetjes
    Annemieke

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  89. If I knew what words would help you through this, I would give them to you.
    If I knew which doctor or treatment could help your sweet child, I would tell you about them.
    If I knew the why of God, I would share it with you.
    I only know that my heart aches for you and what you are going through.
    I am doing the only thing I can, I am praying for you, Eleni, and the rest of your family.
    May The Holy Spirit provide you with an extra share of energy, stamina, and perseverance in the days to come.
    With love and respect for you,
    Luann

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  90. Rachel, you are such a good Mom. And you are doing the right thing - - taking care of your family as first priority. Your fervent care and deep compassion are a great example to all of us - and to your husband and all your children. Praying for you!

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  91. Just landed on your blog for the first time ever and felt the need to leave some kind words regarding your baby, albeit I'm not sure what exactly those words should be.

    Thank you for the zig zag binding tutorial, I have a childhood quilt done this way and have never attempted it myself.

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  92. Rachel - you and yours are always always in my prayers.

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  93. Tears for you. Just don't tell yourself you are not doing enough. I know my son's diagnosis isn't as dire but the first year I became a kind of crazed person trying to do therapy of some sort almost at all times so he could "catch up", but it didn't work. We are human. He needed rest times to just be and so did I and my other kids. I pray Eleni will make progress. I wanted God to immediately heal my son. He hasn't, but He has changed me. Eleni is changing hearts. She really is beautiful.

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  94. Hi Rachel - I am so sorry for your struggles. I wrote in a post earlier about my dear and long time friend, whose daughter has a condition called Angelman's. It took them until she was at least 9 to get a dianosis. Anyhow, since they didn't know what they were dealing with they didn't know what to expect. She didn't talk, eat, walk, etc. She was always in the hospital and wasn't expected to live.
    She is now 14 and still doesn't talk and only started walking at 7 or so and really doesn't eat. This is my friends 5th and youngest child. If you could email me, if you want, I would love for you to talk to her. Her name is julie. I think she could really help you with a lot of things. Anyhow. Hang in there. No matter what happens, you and your family will make it through this. Maybe not how you thought it would be, but you will get through this. Eleni is so cute, especially with he special glasses on. Here is my email in case you'd like to talk to my friend lovesewhard@gmail.com
    As always my thoughts and prayers are with you and your family - Camille

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