Monday, November 30, 2015

Eleni, 9 months

Eleni, 9 months

This month baby is photographed on Ribbon Floral, my favorite print from Denyse Schmidt's re-released Katie Jump Rope collection through FreeSpirit, available now at Fat Quarter Shop, Fabricworm, Sew Modern and The Intrepid Thread.

I often don't know how to start these updates.  Even though I want to keep you all in the loop, it's always hard to choose what to say and what to leave unsaid.  You clearly care for all of us, and you've been a big part of helping us get through a terrible year.  This Thanksgiving I am grateful for you.

Eleni, 9 months

Things are much the same for Eleni since our last update.  During the month of November she did enjoy a string of 5 days wherein she seemed well and did not need supplemental oxygen.  That was during her ABM therapy trip in Florida.  Physical therapy improves her health and her mood.  On the drive home though, she came down with a new cold.

Although she is not immune-compromised, Eleni gets sick more than typical babies due to poor sleep quality (from apnea) and frequent aspiration which weakens her lungs.  Each illness for Eleni means frequent suctioning to clear her airways, high fevers, a little monitor wrapped around her toe to measure oxygenation and wearing a tube that wraps around her ears and across her face, delivering concentrated oxygen at her nostrils.  And it takes her at least two weeks to get through a virus.  By now I'm practically a nurse.

Eleni, 9 months

I wonder if for me November has been a sort of turning point.  There was a two week period when I felt happy again.  I felt like myself, and I could joke and smile again from deep inside without a bitterness in my heart.  That period began when I let go of any hopes for Eleni during her week of ABM therapy.  No longer worrying about what she would or would not learn from those lessons, I was able to just "accept" what would be.  I still did my best to work with baby between lessons and bring her to lessons well-rested and ready to learn, but I wasn't saddened when she didn't seem to make progress.

I hate typing that.  It's terrible!  A parent is supposed to deeply desire and even expect their child to make progress.  Progress equals hope; it equals a future.  For a baby so severely disabled, to come to a point of "accepting" the situation (which is the touted route towards happiness) is to let go of your child's future.  And this is also to die a bit to your own future, in fact.  Live in the moment, they say.  Enjoy the now.  But sometimes there is no joy and little life in the moment.  My baby suffers every. single. day.  She chokes, stiffens, struggles to breathe, lately she's taken to softly crying in her sleep on and on and on with her eyes closed.  She never smiles to show me she feels good or feels loved.  This is not a moment worth enjoying.  It seems more like a living death.

Oops, we were talking about my feeling happy, right?  Clearly not so much now.  But, yes, after I stopped yearning for progress and just accepted what would be, I was able to unburden myself, to struggle so much less.  A few times when Eleni moved in some positive way, it was easier to enjoy that since I was not pulled under by all the many more ways she failed.  Soon after our therapy trip Brandon, Aria, Liam and I had a fun day out together, which managed to be truly fun.  Next I became suddenly inspired to decorate a huge empty wall by our piano.  And Brandon sweetly encouraged me!  I had a darn good time with it. 

It was almost surreal to feel happy again.  But all the while I was distinctly aware that these happy moments were birthed in separation from Eleni.  I believe I was able to be happy because I had accepted that my happiness could be separate from her pain.  As simple as that sounds, it is not a natural sentiment of motherhood to smile while your child suffers.  It is the most uneasy joy.

Eleni, 9 months

Back to Eleni.  This month did hold a very important milestone for her.  Amazingly, we got good news from a doctor...  She can swallow!  Her new ENT put a scope camera down her throat to observe. He watched her swallow her saliva many times, completely properly.  I had hoped for such news based on some slurpy sounds she's been making since September, but our feeding therapist believed that Eleni wasn't making any progress at all with swallowing.  I'm so glad I went with my gut and had her scoped.  This new doctor will be part of a double surgery scheduled for Eleni on December 11th.  She'll be getting a nissen, which will hopefully stop her from refluxing thus protecting her lungs, and a supraglottoplasty, which may make her sleep apnea less severe.  Both of these surgeries have the potential to make Eleni more comfortable and overall more healthy.  Great!  And yet, they are required because she has made less progress than even her doctors had hoped.  It's hard to feel really good about that.

Because of her surgeries, Eleni won't have a swallow study to assess her ability to swallow food until end of December.  In the meantime she could be practicing some feeding skills if I want to go rogue.  Last night I spent hours researching special needs feeding bottles, aspiration risks, milk thickening options and risks, etc., etc.  Such a sap of time and energy, but also exciting to think we may be able to finally try to feed her.

Eleni, 9 months
working on sitting


I accept that fighting for Eleni in all these ways is my roll as her mother.  Sometimes it leads towards a hopeful feeling, a risky hopeful feeling.  But fighting for her doesn't make me happy.  When you're fighting for someone, what would make you happy is seeing them succeed, get well, do better.  I hope that 2016 holds some of that in the cards.  And, if it doesn't... I hope I find the balance between fighting for her and separating from her to find happiness for myself and the others I love.

Thank you for your support this year, financially, emotionally and artistically.  Through it all, this space has remained a true refuge for me.  I can honestly say that even when I'm not having a good week I do enjoy escaping to my work with color and design on Wednesdays and Fridays.  Because of Stitched in Color there is a part of my life that has remained mostly the way it should be.  So thank you for reading!

xo,

Rachel Hauser



77 comments:

  1. you are beautiful and strong; capable and caring; you are honest; you can only walk through this each day at a time, addressing challenges, and enjoying happiness when you can find it. Your friends on this blog are always here with a hug and a word of encouragement.

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  2. I can totally resonate with your feelings as a mom. My 19 year old struggles with chronic pain and only recently have I accepted that it's ok to feel happiness despite the fact that she is struggling. You're a great mom. thinking of you often...

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  3. lots of love to you and your family. XOXOXO

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  4. Thank you for sharing your journey with Eleni. May you find many moments of happiness in the days ahead.....be they little daily moments of something that you do just for you.

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  5. God Bless your Family. Prayers for inner peace and comfort.

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  6. Such huge swings emotionally for you and yours. Some good news and some not. I'm glad you were able to find some happiness in the mists of all this. Of course, that happiness is always going to be tinged with sorrow too. But you need to find these spots, they will help you to endure the rough. (((HUGS))) and many prayers.

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  7. Wish I could do so much more than reading because it feels like I'm doing nothing for you.

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    1. No, never believe that! One thing I have learned in this difficult year is that speaking the pain is crucial to survival. It allows one to suffer terribly and possibly come through a whole, rather than fractured person. I can not count how important it has been to me to be able to share honestly on this blog. Many times, Annabelle, you have supported me with your comments. Even a comment that says "nothing" says that you are listening and that you don't reject me. That comforts me.

      Of course what we all really want to do is help Eleni and make her well. If only!

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  8. I went through all of these feeling when my severely disabled son was born. You are not a terrible parent, you are a wonderful mother, wife, friend, and daughter of God. And accepting them, while pushing them to become better, is what every child needs, regardless of ability. You are amazing!

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  9. May you find the inner peace and happiness that you so deserve. You are such a blessing to your family and I am glad to read that some of the old you is emerging. I have suffered the loss of two daughters but genuine joy and happiness does return stronger than ever. We cannot control what happens to us in this world but we can have a deep appreciation of all that we have been blessed with. Take care of yourself enjoy the good moments that come to you each day.

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  10. Awww. Eleni is so adorable. What a sweet face. She is a good baby.
    All of you will be in my prayers on surgery day.
    We really can't predict what the future holds - for any of us.

    Eleni's crying might sound like she is sad or uncomfortable, but it is a way she is communicating. She hears sounds, perhaps she is trying, Growth in babies is so variable, and the same with those that are born with brain injury. That brain is so little and undeveloped when any baby is born, so there will be days of progress, and days of plateau. Just like a normal healthy brained baby, there is a lot of growing in all areas. Their organs are growing and learning to function. So, some of those can be delayed too.

    You certainly can have those days of sadness. those days are allowed. When that happens, and you feel sad and hopeless, just know that one of us are still holding up the hope.

    My mom (92, 2 years post stroke) says "My life has so changed. I am not used to this. It is almost unbearable" She is right, and sometimes I FEEL the same way. My life has changed.
    Sometimes I am sad for her, and sometimes I am sad for ME.

    You are incredibly goal oriented. We are the same. I have objectives I want to meet. When we feel our path is being hindered, we feel like we are failing. We are not in control!
    Life is different now.
    One day at a time. I am thankful for your friendship, and that you share your struggle. It really is good to let it out. I try to do the same. You have loads of good friends.

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  11. Thank you again for sharing your feelings and dilemmas. I hope the surgeries help her and all goes well.
    Your journey took a sad and difficult turn this year. Your courage and tenacity are a testament to your mothering instincts. Eleni has made us all remember that our lives can change in a moment. I think of you often and always wish you strength and love.

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  12. Your emotions and thoughts speak deeply to me. I pray and hope God can give you peace.

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  13. I'm glad you find joy in your blog and can draw some small support from your quilty friends. My heart goes out to you and your family and hope that you can find strength to deal with this sad situation. Love and prayers to all of you.

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  14. Thank you for sharing the personal update of your sweet little Eleni and your feelings. I know it must be hard as a mother to to stay strong each and every day, but you seem to be doing an amazing job with everything. I'm glad you found your happy self again; that is so heart warming to hear that bit of news. Just know we are all pulling you and your family. May God hear all our prayers and help Eleni improve as she grows.

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  15. Your honestly touches me deeply. My best wishes to you and your family. C

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  16. Many hugs and kisses to you and all of your family as you find a way along such rocky terrain.

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  17. Hey Rachel. Just wanted to say your feelings are absolutely normal. Please do try your best to find some time for you, because your mental well being and positive attitude are so essential to your family. I hope you know there are support groups out there for families such as yours going through this kind of stuff. Its not fun, but sometimes knowing you are not alone, or have someone in a similar situation you can bounce ideas off of may help, even a tiny bit.

    Thank you for sharing this very personal story.

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  18. Sweetheart Rachel - Thank you for doing the unthinkable and being so completely honest and open. You answer questions I couldn't dare ask - your honesty is your gift to us. I had thought about you this Thanksgiving, knowing what a possibly difficult time this might be.
    Best wishes for your new found strength - may it be there when you need it most. Continue following your heart.

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  19. Thank you so much for your honesty. There are wisdom and beauty in your words that help all who read them. 🌷

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  20. Eleni is blessed to have such a "tiger" in her corner....I am glad you are finding peace in knowing which battles to fight and which to survive...I know that Eleni is fighting and finding her moments of peace also. I pray you both find happiness together each day.

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  21. What beautifully, heart-breakingly, honest, intimate, and transparent words. Thank you for sharing them. Eleni continues to be so beautiful & I am always so glad to see updates on her, and you. God's peace be yours.

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  22. Dear Rachel, I have not been keeping up with any blogs this year. Something today prompted me to read this latest post on precious Eleni. Then, of course, I had to go back to the beginning and have spent this evening reading through your family's journey. THANK YOU SO VERY MUCH for your vulnerability, honesty, and openness. Thank you for sharing your journey with us. Eleni is a beautiful child, created in the image of God. I'm so glad to see the many steps she's made and how she's grown! Yet, I mourn with you for the death of dreams and hopes you had for her. I'm so very thankful that you are finding moments of joy in your life again and will pray for continued healing for your entire family. May God's mercies be new every morning! Also, is there a current fundraiser I can contribute too?

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  23. Again, thank you for sharing. I think about Eleni often & pray for her AND you.

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  24. I admire your sincerety and honesty about your feelings, I have the great luck of having three healthy children and I cannot imagine how I would deal in your situation. Best wishes and love from France, Florence

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  25. Thank you for sharing your feelings. It is heartbreaking that it is so hard to hold on to your hopes. But I understand that being realistic gives you peace and that it very important too. Enjoy whatever you can, you deserve it.

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  26. Noto que tu sinceridad hacia ti misma te está dando alas para aceptar, entender y sobrellevar esta situacion. Noto que has avanzado tanto...
    Me alegro por eso, me alegro por tus ratos de bienestar,me alegro por vuestros paseos, me alegro por la familia que tiene Eleni, me alegro por los avances de Eleni (lentos, pero avances al fin!), me alegro porque te sientes apoyada, me alegro porque sigues luchando y aprendiendo cada día, me alegro porque compartes tus pensamientos y vivencias. Gracias por hacerme reflexionar acerca de tantas cosas. Fuerza y fe! Un abrazo!.
    Dama

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  27. Noto que tu sinceridad hacia ti misma te está dando alas para aceptar, entender y sobrellevar esta situacion. Noto que has avanzado tanto...
    Me alegro por eso, me alegro por tus ratos de bienestar,me alegro por vuestros paseos, me alegro por la familia que tiene Eleni, me alegro por los avances de Eleni (lentos, pero avances al fin!), me alegro porque te sientes apoyada, me alegro porque sigues luchando y aprendiendo cada día, me alegro porque compartes tus pensamientos y vivencias. Gracias por hacerme reflexionar acerca de tantas cosas. Fuerza y fe! Un abrazo!.
    Dama

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  28. How to hope, when it feels your hopes keep being dashed... dear mumma you're amazing xx

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  29. You are a supernurse!
    Listen, every emotion, every word that you write down will someday be a huge comfort to another family going through the same thing. I know this wasn't your plan, but please remember there will be parents in need of support, stitched in color, will be there for them, as we are here for you.
    Seek out ways to be happy Rachel, you do deserve it xxx

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  30. Rachel, this is so hard to find the right words... I hope you'll get more and more of these happy moments.

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  31. It is really hard to feel happy when one of your babies is suffering but it is so important that you allow yourself the chance to recharge your batteries even if that means being separated from Eleni to do it. I have found that it is all too easy to drown in their suffering, taking time out restores the reserves to help with the treading water when things seem endlessly miserable and frustrating. Thinking of you all as always xx

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  32. My heart really just aches for you and your entire family. I'm glad that you are finding some small separation between Eleni and your own joy and that of your family. It's healthy and, in the long run, will provide you with even more strength.

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  33. I do not find the way to let you know how strong and inspiring you are, Rachel. Excellent mother now and always, for Eleni and her siblings.
    I send a lot of good wishes and the biggest hug! 💖

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  34. I think it's amazing how honest and open you're being about your situation. In the world of blogs and social media, people often want to paint a pretty picture all the time and it's just not reality. And while I hate to hear that you're struggling and that Eleni isn't doing as well as you hope, it takes a lot of courage to share those feelings. Hope and prayers that 2016 brings both success and balance for you, Eleni and your entire family.

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  35. As I sit and ponder the right words to write, and read over the heartfelt and eloquent words of others I am at a loss as I try to support, lift and provide solace. Like Karen, above, these posts and their honesty and rawness meshed with deep love and devotion and an incredible fighting spirit touch me at a level that is difficult to express.

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  36. I hope and pray that Eleni's surgeries go well and you all have a very Merry Christmas and a Happy New Year. I look forward to all your posts!

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  37. thank you so much for sharing what is on your heart. I truly feel that I can understand what you are saying. God bless you and your family.

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  38. thank you so much for sharing what is on your heart. I truly feel that I can understand what you are saying. God bless you and your family.

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  39. My heart breaks for you, Rachel. You are such a good mother.

    I want to remind you of a painful truth, because I feel like--this isn't something we talk about. I was very ill as a child. In and out of ICU, again and again, into the ER, then the hospital, then the ICU, then home, then the ER, and on and on. Nearly dying, really rather frequently.

    As a child, you take your fighting-mom for granted. That's as it should be.

    As an adult, I can see the cost it was to her. The truth I want to share is this: Whether you're miserable or happy, in a single moment, doesn't actually affect your baby girl's potential to get better.

    She's got her fight to fight, and so long as you're there, doing what it takes to get her the treatments--that's what matters.

    I think we, as a culture, believe that we must frown when we view suffering, but there's a lot in the world beyond suffering. More to look at than the pain. Seeing Eleni as she *is*, right now, isn't necessarily detachment, but a kind of grace. You would love her if she never got further down the progress. You love her, right now, for who she is, right now. All of us want to be seen as lovable for who we are and not where we're going, and I think, even though 'where she's going' is life and death, that it's OK to see her for who she is, the future aside.

    As a child, in the ICU, afraid of the machines and uncertain, struggling to breathe--I didn't resent my mother's smiles to my brother or sister. Her laughter never felt like a betrayal. I saw her joy as a kind of hope. The world is a beautiful place, full of wonderment and delight, and my mother's happiness warmed me, even if I couldn't yet feel those feelings myself. It was a kind of guide, a 'someday I'll feel that sun on my face' feeling.

    I don't believe your happiness is a betrayal. Maybe Eleni doesn't either. Obviously, none of us can truly KNOW what she feels right now, but I wanted to share the perspective of a child who was, well, dying off and on for quite some time. (Sounds dramatic, but in this case, I guess I feel like maybe it's a perspective that would be helpful to you.)

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  40. When I read your posts about Eleni I am always struck by your bravery, your strength and, most of all, by your ability to maintain perspective. I am guessing you will not agree that you are brave, strong and able to keep your perspective -- and no one can 100% of the time -- but these qualities come through very clearly.
    Maybe what you are beginning to accept is that you are doing everything you reasonably can do for Eleni (you're doing way more than that, in my opinion, but I am imagining you telling yourself that you could be doing even more). I can see this being very, very painful, but I don't see this as letting go of her future, rather I see it as being the best parent you can be.
    I think of your family often and hold you in my heart.

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  41. I just wanted to let you know that I often think of you, Eleni and the rest of your family between your posts and wish for the best for you. You are clearly handling a very difficult situation with great love, courage and honesty. I'm sure your writing is helping, or will help, another parent in a similar situation. I have no words of wisdom, but did want to provide the feedback that you continue to bring beauty to the world, through your parenting, your writing and, let's not forget, your quilts.

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  42. Oh Sweetie. You should never feel guilty about needing some separation. You are doing everything you can do that is humanly possible for Eleni. More than most would. But you have just as much of an obligation to your husband and those other darling children and they need you happy and whole again.

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  43. I love reading your blog, and I love what a great, kind, caring, sensitive person - mother that you are! One thing you said, made me wonder, is Eleni really suffering - or is she struggling? There is such a huge difference, one indicates pain, the other trying to accomplish. Perhaps questioning this might help your suffering. My heart goes out to you and your family. I look forward to your blog every month. Your baby is beautiful. I love that you had days of happiness this month, amongst such difficult times.

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  44. That centre picture looks like eye contact and a smile ; )
    Thinking of you and yours. I will be praying for you on the 11th. Have a wonderful time with your family leading up to Christmas. Blessings on you

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  45. Praying for you, Eleni, and the rest of your family. It is okay if you separate a little, get a little rest. It is okay to be happy. You need to have rest and time to be just you. You will burn out if you don't. Take care.

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  46. Oh Rachel---I don't think there is a greater pain than watching ones child be in pain. It seems like enough that she would be having all these developmental issues, but that she struggles to be comfortable too just must feel overwhelmingly powerless for you. I am so sorry. I know it soulnds cold to you to say that you need the separation from her to feel happy, but this disconnect doesn't mean you care, love, strive any less. It just gives you more strength to cope and help her because emoting all the time is too exhausting. Maybe you can call it "perspective" instead of "separation". I wish for increasing peace of mind for you---Sara

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  47. Rachel, I haven't read all the comments so I don't know if someone else has said what I'm about to, but any feeling you have is valid and should not be judged by anyone, anywhere. You are the one living with this and I really hope you know you can say what you need to say and we will all try to understand. I'm not religious, but I am a mother and I think of you often and send you good vibrations! Xo

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  48. As a fellow parent of a special needs child, I feel your pain, but also want to let you know that you must be kind to yourself. Sometimes you just need some time to yourself where you aren't caring for your child 24/7. Elena will get where she is going on her own schedule and much as we try to hurry them along, we can only do so much. Even now, when my child is almost 12, I am sometimes surprised when she accomplishes something I never thought she would be able to do--and something she did because she (not I ) wanted to do it.

    I think that Elena is going to be more comfortable, sleep better, and make more progress after the surgery. If you want some to "talk" with some other parents who have gone through similar issues, check out the Trisomy Families FB page.

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  49. Hope that surgery will go well for Eleni and that she will make progress after that:-) A tousand hugs!

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  50. wow. Thank you for your honest words. I think what you are doing, by sharing, is so important and has an impact on others that you probably just can't really imagine. I am so sorry for your dashed hopes, and hopeful for you and your family to have happy days ahead, and to feel real honest to goodness joy. Many blessings are prayed for you and your entire family. Thank you for sharing. Sue.

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  51. I hope Eleni's surgery makes her more comfortable. I'm glad that you, your husband and older kids have found a few moments of happiness. May there be many more in your future!

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  52. I hope Eleni's surgery makes her more comfortable. I'm glad that you, your husband and older kids have found a few moments of happiness. May there be many more in your future!

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  53. It must be so difficult Rachel, hearing your child crying in her sleep. I also hope that Eleni's surgery makes her more comfortable. I'm glad that you and your family have found some moments of happiness so essential for all of you. Thinking of you often.

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  54. Thank God for quilting, for color, for design...for coping and surviving. Thank God for blogging as an easier way to journal and the blogging friends who support us. Learning how to detach with love in order not to go down with them...a very very hard road. xxoo

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  55. Rachel, I have placed you and your sweet family - most especially Eleni - in my prayers tonight. xo

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  56. I read this, read it again, and then I had to read it to my husband. Your vulnerability and willingness to share your joy, pain, surrender, and even despondency, are so powerful. Your thoughts are profound and leave me pondering what life would be like if we could all share as bravely and elegantly as you do. What connection we might find. You are a beautiful soul. Many, many thanks.

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  57. Swallowing! Go Eleni !
    I'll be praying that the nissen is a success and that it gives you and your precious baby some relief.

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  58. Rachel, once again I'm encouraged by your wrestling and faithful pursuit of joy and obedience. I can't tell you how glad I was to read of you having fun this month. Such a gift to you and your family. I hope the surgery goes well! xxx

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  59. Love and prayers to you Rachel. Your journey is hard and you are so courageous. I remember after my mother died the strange experience of feeling happy those first few times - it's not disloyal or unloving, it just a different happy and it's good. I hope surgery goes well for your sweet blessing.

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  60. Sending love and hugs. There is nothing wrong with being happy. You are very courageous fighting for the best for your daughter. Praying surgery goes well.

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  61. You seem such a loving and nurturing woman it has to be torture to have the child you struggled so to have be unable to respond to that care. I think your care and attention are exceptional, and that you have to be able to find your own comfort, joy and happiness, regardless of sorrowful circumstances, so you can renew that love and nurture you offer so generously to all of your family members and friends. Know that happiness you experience is passed on to all around you, so the more the better!

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  62. Prayers for you and your family. You have been given a difficult path to follow and you are doing everything you can for Eleni. You will continue to struggle but you will find balance. Remember what they tell you when you fly. 'Put on your own oxygen mask before you help others'. You do need to take care of yourself so that you can take care for your whole family and marriage.

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    1. Nancy, I've flown with Eleni several times now to therapy and when they say that line I always think how true it is. But it's counter intuitive too, as a mother. I can see why they feel the need to spell it out every time. Thanks for sharing.

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  63. You are so much stronger than I could ever be. Thanks for sharing and all the honesty. We are all hoping for good outcomes for Eleni too. Please let us know how the surgeries go and if we can still help financially.

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  64. Oh Rachel! I've been thinking of you ever since I read this post but have been away from my computer. Whenever I see an Eleni post in my Feedly feed, I jump right to it on bated breath. I am so, so sorry. It is overwhelming how unfair of a place this world can be. You are such a good mother and your fight for her has been inspiring. I'm just so sorry. My heart aches for you and for Eleni. I wish there was more I could do and I feel like these words fall so short. But I just want you to know that I am thinking of you and praying for you. And your ability to share is so powerful and so moving.

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  65. I am once again praying for you all. Lots of love.

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  66. Rachel, I'm so glad you found moments of happiness recently. I'm sure it's a struggle to separate yourself from Eleni, but taking those times to find happiness for yourself will help keep you sane and able to keep going. Such good news to hear that she can swallow. Here's hoping that means you'll be able to make some progress with feeding after the surgeries. I'll be praying on the 11th.

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  67. I agree with the comment that what you are calling separation or detachment is GRACE. Even if it goes against your mothering instinct this is the path to happiness for you as Eleni's mother and as a woman with many others to love in your life. Thank you for your beautiful raw honest words.

    Swallowing! Think of the shear joy of flavor in Eleni's life. Hoping for a good outcome for her surgeries.

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  68. My heart is so heavy for you and Eleni and your family Rachel. I'm thanking God you had some time to be happy, separate from Eleni's pain. It might not feel natural, but how can you survive otherwise? It is good that you keep up your quilting and your blog and have this place where things are more as they should be. I know how that feels, although I can only imagine what you are going through with your little baby. Will be thinking of you and praying that this next year being many more happy and hopeful days.

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  69. Every time I come and read your posts, I think how completely lucky Eleni is to have you as a mother. The love you have for her is so blatantly strong and unbreakable, despite the personal toll it takes on you. I know you will put it down to a mothers sacrifice, and see it as being 'normal'. But it's not. Many would have given up the fight for success long before now and accepted or not tried for any different. True character is shown when life's circumstances throw us the biggest challenges, and your character Rachel is incredible! I am wishing and praying for more happy moments for you over the next 6 months. And immense blessings for your relationships with the others in your family!
    I would be very interested to read a blog post written by each of them about how this experience has been for them. That might be extremely valuable for people who also have a highly special needs family member. But it would also be good for those of us who care deeply about your family and cheer you all on from around the globe. Hugs from New Zealand and Merry Christmas to your family. Xx

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  70. Hoping for the very best outcome for Eleni's surgeries this week. You are in my thoughts.

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  71. Hi Rachel,
    I've intentionally been trying to cut my online time down so I am just now seeing this. By this time Eleni's surgery has already happened and I am so hoping and praying the very best for this little sweet one.
    My heart is so raw and tender for you and your family. I ponder sometimes why God calls some to walk down paths that others don't walk on, and I remember Isaiah 55:8, "For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord. We know the character of God and must choose to trust in Him because He is who He says He is. God has Eleni's name engraved on the palm of His hand and loves her with an everlasting love. Rachel I pray you and Brandon feel the love God has for Eleni ~ and for each of you. Standing with you in spirit and with love. ~Debbie

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