Wednesday, March 18, 2015

in the evenings

Sunburst crochet blanket

After the kids are in bed and we've settled for the night, Brandon and I spend an hour or so together talking or watching a show.  This is the time for our piece of normal, for chocolate, maybe some laughter and my bit of making for the day.  Tucked beside the sofa is this enticing basket of softness and color and cheer.

Sunburst crochet blanket

I haven't made it to the sewing machine much at all in the last 2 1/2 weeks, but I have invested many restful moments joining these sunburst crochet squares.  I started joining these about a week before Eleni was born, and I have only a few rows left to join, actually. 

Like any project or plan or item of clothing that I experienced during my pregnancy, I am often struck as I come across it again, confronted and disoriented with the strange reality that my baby was just fine, totally fine at that time.  These touchstones are a time capsule of our life before.  How quickly and mysteriously life does change. 

Sunburst crochet blanket

Back to the blanket.  I am whipstitching the squares together with cream yarn and a chunky needle.  I find it best to work from the back of the work, so that the front of the blanket looks a tad bit nicer.  The most efficient path to join the squares had me stumped at first.  Eventually I learned to attach a whole row in one long stitch line across the width of the blanket.  At that point, only one side of each newly added square is joined to the blanket.  Then, I go back and join the squares' sides together using yarn strings that extend between each column.  You can see the yarn strings hanging out in this photo as I have yet to join the sides of squares together in my most recently added row.  I leave the yarn strings long to use when joining the next row of squares, which reduces the number of times I must tie in with a new joining yarn.

Sunburst crochet blanket

Here's my blanket so far.  I may have to make more squares to bring it to a desired size, or maybe a border?  We'll see.  I'm just feeling it out.

Sunburst crochet blanket

My heart has been quite busy processing lately.  There are many stages of grief, but the most difficult one for me was when my mind kept fighting to find a way out, a way to fix things, a way to somehow make things OK.  I am a fighter.  I would to do anything.  When I want something to be different in my life, when I decide "the way things are" is not good enough,  I will literally move across the country, take my kids out of school, make my own way into a job, because "where there's a will there's a way."  I embrace hard work to make change.  And even though I hope so much for Eleni's healing, I cannot make sure it happens.  I cannot secure her a healthy body in the future.  And I certainly cannot go back in time to fix this (though I really think that should be an option.  Who let that one slide?). 

So, I realized a few days ago that I won't be made happy because I am able to change what happened or to guarantee a normal-ish future for our baby.  Instead, my opportunity for happiness is here every day.  I'll live not just aiming to survive or get through each day.  No.  I'll live searching for happiness in each day, just the way things are now. 

Maybe some days happiness will be hard to find.  Certainly some days are bleaker than others.  But, I'm confident that most days I'll find it.  


74 comments:

  1. I am struck by how you let us in to this very tender part of your life. I don't think there is any coincidence that Eleni was given to a fighter such as yourself. Grieving the loss of what you thought your family would be like is huge, as I know from my own experiences (the only thing harder was watching my husband go through the process). There may be days when the happiness is hard to grasp on to, but I suspect there will be many more when the beauty and joy overwhelm you.

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    1. Beautifully said. It is hard to let go of what "we" think is normal and accept what is the new normal. God will provide a way!

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  2. Oh Rachel! This is profound and heartbreaking and hopeful, all in one post. You have wisdom and insight that people who have lived twice as long as you often do not have. Many, many moms with children who are perfectly 'healthy' don't grasp this. You have been in my thoughts and my prayers so frequently. I'm sending you so much love! xx

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    1. Thanks, Rachel. Today we were told that she'll need a feeding stomach tube to go home. That's both sad and exciting. I'm so ready to take her home! She may be home in a week and half. I hope by Easter Sunday.

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    2. That would be a wonderful time to greet Eleni at home!

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  3. Dear Rachel, I'm thinking how strong and brave you are and wise, too by thinking about the little things to give you happiness even you have a huge weight on your shoulders. For me crocheting is very healing and relaxing. Making one by one those 'grannies' and thinking only what colours to use and then connecting the squares, is the best Project for you now. Love, Teje

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  4. You are an awesome woman. Eleni isso lucky to have you as her mother. Her life will be full of love. You will find her abilities and make the most of them. You also have many people sending you strength, hope, and love. Hugs to you, Brandon, and all three of your children.

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    1. I agree with you so much. Rachel, she's right, you will find Eleni's talents and help her use them. Sending love, hugs and strength.

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    2. I agree with you so much. Rachel, she's right, you will find Eleni's talents and help her use them. Sending love, hugs and strength.

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  5. Rachel,

    I am praying for you. I know from experience that looking for the happiness each day and acceptance of the way things are is very hard. In my case, it was never being blessed with children and then losing my dear husband of 35 years to depression last summer. I will definitely keep you, your family and Eleni in my prayers.

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    1. Martha, thanks for sharing your story. You're right, it can be very hard to find acceptance. It's easy when something tragic happens to feel that no one has as horrible of a situation as oneself. Hearing about others' challenges continues to give me perspective.

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  6. Oh Rachel, you are constantly in my mind and my heart. And one thought is very clear to me:
    Eleni is such a clever little soul, because she choose a mother with so much strength and power and love! You will be able to carry whatever might come. And for the moments, when you need a little rest and someone who carries destiny just a few minutes for you, so you can breathe easy, you won't be alone.
    I am sending you love and hope and strength. Sabine.

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  7. And we will be right here for you to listen and read, to rejoice and grieve. The progress on your crochet blanket is just beautiful.

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  8. That's kind of grace, isn't it? Finding the love in us and in each other with all of our imperfections? I have a sense of gratitude that I get to do this as a teacher daily. I can only imagine what a gift it could be as a parent.

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  9. Rachel,

    I am blessed to have received a set of coasters from you last year in one of your giveaways. I have them in several rooms in my home and every time I look at them I say a prayer for your family. God choose you to be Eleni's mom for a reason, that reason may not be visible right now, but one day you will know why. Much love to you and your family.. Lisa

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  10. So good to hear you are finding happiness in the now. Wise words, although sometimes hard to stomach when life throws you punches. You are a fighter Rachel, and little Eleni too. Praying each day gets a little easier. Surrounding yourself with soul-full friends, family and fabric (or crochet) is a great recipe for happiness. xo

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  11. Rachel, I feel inspired by your words of wisdom. I’m impressed that you‘re such a fighter. You describe it all so well and make us part of this difficult journey that has crossed your path of life. I’m thinking of you, Eleni and your family a lot. I’m sure you have it in you to find a piece of happiness in every day to come!

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  12. I am a lot like you in the way that I am a fighter and a problem solver. When faced with like circumstances, I had a lot of trouble finding a place for my mind to rest. It took me time to face that I can't solve the big problem. It is a long series of problem solving and fighting along the way that I needed to do. Which we all do with healthy kids too! It is just that we believe that our children are so full of promise at birth that we don't put all the issues we will have with raising them in a basket at the beginning of their life and worry about it. Which is fantastic for a mother that went through a pregnancy and birth. A gift for sure. But what if all kids came with a list of the issues you would deal with throughout their life. I probably wouldn't have gotten in line so many times! Wishing you peace and some happy and hopeful memories of tiny Eleni's first days to carry with you.

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    1. I really appreciate what you said about how with most children we don't start there life looking at a basketful of challenges ahead. That is one big difference with facing a disability with a baby. It is just the exact opposite of the peace and optimism that usually come with a new life. Thanks for your empathy.

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    2. Looking back, I just wish I could do it again, now that I know my child. I know the joy she is now. At her birth, I let professionals tell me who she was and they didn't know her. They knew some things about her, but certainly not the essence of her. I missed just celebrating her fully in the beginning and reveling in the magic of her newborn self. It is very difficult to navigate until you have a chance to form that close bond with your child that feeds the strength you need to accomplish what you need to do. I wish I could send you that basket full of ignorant baby bliss that is supposed to be included with each birth just to offset the lack of sleep and a case of colic. That basket seems to get lost in the shuffle when you could really use it.

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    3. Thanks again for your insightful thoughts. Today I realized all the sudden that I needed to buy some flowers to celebrate her birth when I get to take her home. Because in all this tragedy we do forget to celebrate. I am starting to find my way there.

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  13. Oh Rachel. Absolutely lovely post, and lovely blanket. I am loving seeing it come together. Gorgeous. It almost seems to glow. Somehow in times of great trial, these small acts of love and beauty are that much sweeter and more meaningful. There is so much in life that is outside our control. The act of creating beautiful things (music, literature, art, craft) in a troubled and broken world is so human and so soul-satisfying. I have been thinking of you and Eleni often, and hoping for peace and healing for both of you. Thank you for sharing with us.

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  14. Dear Rachel, I so wish there was something I could do, some comfort I could offer. I have none. Simply praying for grace for you today and I will again tomorrow. Thankful you are finding moments of joy in this time of uncertainty.

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  15. I pray for your strength to meet the challenges ahead. I have worked with children with disabilities for 26 years. I pray the professionals you have on "Team Eleni" are wise and intelligent and up-to-date on all the new technology and opportunities for children with disabilities (especially for communication which is my field) . And I'm sure your older children will be a blessing to their little sister.

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    1. Thanks, Dawn. We are very concerned that Eleni may not be able to talk since she doesn't make many sounds at all and they are only quiet, plus she has not learned to suck. I am glad that there are new communications technologies. Thanks for the reminder. So hoping she can communicate somehow!

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    2. Rachel, a friend of mine has a daughter with CP and one of the challenges she faces is that her voice is almost a whisper. She can speak quite clearly, though, and does go to therapy to help her strengthen her voice. She is a sweetheart, very bright, and a joy to be around, just as I know your beautiful baby is as well. I am still praying for you. xoxo

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  16. I am reading this and just giving off great big ***sighs***.....oh my. Life can sure yank the rug out from under us at times. I pray for you and your family. Praying for peace of heart, and wishing you joy in the little things
    .
    I am a "fixer"...I just want to fix things...and quite often I can't. I just have to be quiet, pray and wait for the outcome...and that is so hard to do. Wishing you a peaceful heart and the warm feelings of love, caring and best wishes from so many for you and your entire family/

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  17. You are so right about happiness! The link between suffering and happiness is complex Living in the present according to our values is key. Love and prayers for you and your family.

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  18. You have my very best wishes. I'm at a loss to articulate much more.

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  19. Rachel, I think you are wise beyond your years. Eleni is very lucky to have you.

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  20. I so agree with you...find happiness in the imperfection and let go of the way it "should" be. You are such a strong person with so much heart. Love and prayers going out to you and your sweet family.

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  21. You and your family are still in my thoughts and prayers.

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  22. Dear Rachel, I pray that as you write and reflect it will be therapy for your soul. I don't know if you've ever watched Lord of the Rings? There is a scene between Frodo and Gandalf with my very favorite lines:

    Frodo: I wish the ring had never come to me. I wish none of this had happened.
    Gandalf: So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought.

    As I was praying for you today (and for a couple of other life-changing hurts faced by family) I was all of a sudden struck by the remembrance that God does not operate within the restraints of our time. As we lift sweet Eleni up in prayer God is hearing our prayers before, during, and after her birth. God knew the path Eleni would travel, and therefore the path your family will travel with her.

    Shock and grief are still fresh wounds and it will take time for them to heal. But, the God I know does not make mistakes...I've no doubt the blessings of your life with Eleni will be greater than you can even dream or imagine.

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  23. Beautifully said-finding the happiness in the now-although we can have hope for future happiness, it is so important to see the beauty & joy that is right at this moment

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  24. As a fellow"fixer", I totally get what you say. I fight and fight to make things I want to change different. I used to think that through sheer force of will there would be nothing that I couldn't make different, if I really put my mind and heart into it. Then I met with some situations and events I could not change, ever, and I had to change my mindset, as the drive to "make it better" became unhealthy for me in the face of the things I could not change. The biggest challenge for me was to learn to live in the here and now. I often think of the prayer "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." You don't have to deal with next month and next year and so on, in one go. It's just a day at a time. Keep doing your sewing and your crochet - I believe that for creative people, making things is our soul food and our subconscious unwinding, and it will help to anchor you at a time which must feel so unreal. And the stronger you keep, the better for you and your family. Thinking of you and your beautiful daughter Eleni.

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  25. Rachel - You are such a strong woman - exactly what He had in mind. Your attitude is a result of you being that make it happen person - you will find your way. I am sure of it. Keep your friends and family close and let them help you.
    I love your blanket. Eleni and your family will love it too because Mama made it and they know Mama loves them. I love the shapes that the white negative space makes when they are joined. To me, that is unexpected joy! Congratulations on your project and your new attitude. I wish you strength and love when you need it.

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  26. Rachel,
    You are a remarkable woman with a beautiful outlook. I admire you. Thank you for sharing your thoughts and your lovely, colorful creation: the crocheted blanket. I want to share something that I learned during a very dark time: gratitude. It is proven that being grateful can change our brains in healthy, positive ways. I find that when I start making a gratitude list, it is often difficult to stop. Being grateful is a habit that I've cultivated for myself and my family, it has been a wonderful practice for all of us. With sincere love to you and your family. Lynn

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  27. Rachel, my goodness, you are so inspiring. Your post is so eloquent, and I wish I could put into words how amazed I am by your strength. Eleni is indeed a lucky little girl, and she will give you many blessings in the days ahead. Just enjoy the moments you can, and have strength to deal with the rest. Your blanket is beautiful and I'm sure it is a source of comfort. Thank you for sharing.

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  28. A lesson for ALL of us, in your post....that all that any of us have, is just this moment. Just this time, this very moment, to choose happiness in the midst of everything swirling around us. Just this. Just now...just this moment. Nothing more.
    God bless you all...

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  29. Rachel, I have nothing profound to offer, but do so appreciate your taking time to share what is going on. I continue to pray for you and your family, and am awestruck by the beauty in your post and the above comments. Sending love to you all.

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  30. I truly believe that you CAN find a piece of happiness every single day and you and your family deserve that! I admire your strength and ability to share as we all have different experiences and yours is nothing I have ever gone through but you are strong and I have faith that God has a plan and I will pray for peace, strength and happiness for you and your family and sweet little Eleni! She is a blessing and so incredibly lucky to have you as her mommy! The blanket is incredibly gorgeous by the way!!!

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  31. Rachel, honey, it's all been said. And why is Eleni fighting so hard? Because her new family has filled her little life with love and acceptance and hope beyond measure. You are all in my heart, dear girl. Please shoot an email this way if there is anything I can do from my little corner of the world. xo

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  32. My oldest, now 24, was born with Cerebral Palsy. She had suffered a stroke sometime in utero. Together, our family has experienced the crazy CP carnival ride of fighting and accepting and adjusting.
    Today, Alicia is a teaching assistant at her former elementary school helping children learn, not only the basics, but also about potential and trying hard and hope. Other children with disabilities and their parents are inspired by her.
    You are already wiser than I was then - Happiness is indeed here every day even when it is hard to find.
    Also remember - Take care of not only Eleni, but your sweet family, and most of all, yourself.

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  33. Such a beautiful, reverent and inspiring post you've made, Rachel. Wishing you and your family grace and peace on the journey ahead. Much love to you.

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  34. Brilliant processing and conclusions Rachel, something we can all apply at various levels too. Looking for happiness in today, amongst all our imperfect circumstances, is perfect, for today is all we have.

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  35. What lovely, heartfelt words you have shared from your deepest depths. Your three children are blessed to have you for their Mom. Much love to you and your husband and your dear, sweet Eleni.

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  36. Rosemary B here: I am still praying for all of you, Rachel.

    Please keep taking one step at a time, and for now, small steps.
    Now you really know, all of you can count on all of us.
    You are loved so much.
    It is going to get better. I know it.

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  37. You are so inspiring. Thanking for sharing. I will never forget these words.

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  38. My friend said to me when we were going through cancer treatment with my daughter that 'joy will come again' and almost immediately I began seeing joyful moments in the ordinary everyday things of life and we made a point of celebrating each and every one until finally love was more powerful than fear and overcame it. Thank you for your heartfelt sharing.

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  39. Dear friend I knew you would find a way of coping, it's what you do Rachel. It's amazing the way we can train our minds to find the good in a situation. It sounds like you are self motivated, but for times when you wobble you could try using a free app called destressify, I've been using it and I find it is changing the way I think. I also want to congratulate you on the birth of Eleni, I feel with everything thats happened, you've missed out on the normal response to a baby being born. Never has a child been so loved. Clare xxx 'take one day at a time'

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  40. Rachel, it is so hard when you to see your way through when you have to throw away the rule book, and feel so lost.
    When my DD3 was diagnosed with Rheumatioid Arthritis at 18mths I felt the whirlpool of pain you are in, and my heart goes out to you.
    But keep that anger and the fight.. its not if, but how things will be achieved. You are a problem solver and Eleni will be too.
    Its hard to see the child behind the problem but hopefully that will come when she is home with you in that lovely room. Then the 'how' will begin to emerge as she can take her place in your family.
    Keep strong.
    Freda

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  41. I have such admiration reading your post Rachel, this is such a difficult time for you and your family and you have expressed it in such a wonderful way. I will keep praying for you and your family and really hope you find some happiness in each day,how little might it be sometimes.

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  42. I saw your comment above about getting flowers to celebrate Eleni's homecoming, and I realize that I have yet to congratulate you. I'm sensitive to the hardship that has come with this new life, but I'm excited that your little girl may get to come home soon. Congratulations! My flower for Eleni will be off to Jodi tomorrow and I'm putting joy into every stitch. I hope you continue to share both your happiness and your challenges here. Sending love to you and your family!

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  43. There's so much on my mind when reading your words and so much that I could say. But I am really really to tears when I read about happiness in your day and how you turn yourself in this direction. I'm so glad for you, not every person is able to do this. Keep on going that way, it's a sign for many people. Thank you.

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  44. There's so much on my mind when reading your words and so much that I could say. But I am really really to tears when I read about happiness in your day and how you turn yourself in this direction. I'm so glad for you, not every person is able to do this. Keep on going that way, it's a sign for many people. Thank you.

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  45. There's so much on my mind when reading your words and so much that I could say. But I am really really to tears when I read about happiness in your day and how you turn yourself in this direction. I'm so glad for you, not every person is able to do this. Keep on going that way, it's a sign for many people. Thank you.

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  46. Such a lovely post. I'm sending loving thoughts your way ~ you are such a strong woman and to find such peace and happiness in a time where it is scarce takes courage. I admire your spirit!

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  47. Oh bless you dear Rachel. I pray that as you practice joy, it will become strong like a muscle, and easier to call on in the grief and struggle.
    The light in your house is beautiful. I hope you can bring her home to it soon.
    Ah, I have so much in me, longing, hope, I don't know how to put it into words. But I know the Father hears us and loves you. X

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  48. I'm so sorry to hear about Eleni! My thoughts are with you and your family sending you some healing vibes.

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  49. Thank you for being such an inspiration.

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  50. You are truly a remarkable person. So well grounded. So smart. So feeling. I hope you can feel this big virtual hug I am sending.

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  51. HI, you don't know me but yours was one of the first blog that I began to follow.Today im going to tell you a little about my story; you see im 59 years old ,married for 36 years with to chidren, a boy and a girl ; when ny daughter born she was very healthy and goes home 24 hours later was so happy,then three days later she began convulsing without cause, to this day we still don't know but at age 4 doctor said she had cerebral palsy. Today she is a 31 year old woman, she cant do almost any thing by herself ,she will be always like a toddler but she is very happy and healthy girl and very loved for all who know her, she is the glue that keep us togheter with all around us. Five years ago her brother was killed but God first she is the one who keep us going.I pray that God give you and yours peace and strength,live every day a minute at a time and enjoy every second of her live

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  52. What a lovely, inspiring person you are.

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  53. Rachel - I just wanted to tell you how beautiful this post is. I can't even imagine the emotions you have been experiencing this month. I so admire your willingness to share a slice of it. My heart aches for all you are going through. Working with your hands is such a gift isn't it? It's amazing how that work can bring peace to a heart and soul in angst. Eleni and your family are in my thoughts and prayers. Sending love your way.

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  54. You reminded me of this quote by Elizabeth Edwards https://www.pinterest.com/pin/207939707764806706/

    You are in my thoughts and prayers. I wish I could do more...

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  55. Hi again. Just reading back through your comments and replies - and where you said you would be buying flowers for her... my heart swelled for you and for her. She should have flowers and balloons and gifts and cards and visitors and be loved on as much as possible (health appropriate and circumstances permitting). And you, Mama... you have given birth, you should have cards and gifts and flowers and congratulations. CONGRATULATIONS <3 <3 <3

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    1. Oh yes, I want to second that - congratulations on the birth of your baby girl! I know it's a huge thing you're going through and words seem completely inadequate (although you are doing a beautiful job of sharing very eloquently here). But in any case, your baby girl is here and I hope you can welcome her home soon!

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  56. Dearest Rachel! A long long time ago I told you about how I felt i knew you. And the many things we had in common. Reading your post showed me one more time, how alike our souls are. We re fixers, whatever needs to be done to make things right, we do. And life has given us a wake up call. We cant control everything. We cant fix everything. My son was diagnosed last year with a genetic disease, no cure, progressive. No prognosis. And I have come to learn the very same lesson you are sharing with us today. We only have the present and we must be happy in the present. There will be cloudy days. There will be sunny ones. But in the warmth of love and companionship we must dwell and be happy. For we have been blessed with children that will anchor us in the present. Im sending you comfort and light. xxx

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  57. Your "fighting and fixing" skills will be essential in getting Eleni the care and support she needs. Now you will be acquiring some new skills- such as how to accept and deal with what you can't fix. It's good to know how to do both.

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  58. Thank you for sharing your thoughts. I'm almost without words having read about you and Eleni. I wish you and your family lots of love and strength. Eleni has a very special Mom.
    Groetjes
    Annemieke (from The Netherlands)

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  59. You are such a fighter my dear and God gave you this baby for a reason. Eight years ago my daughter who Ihad had diabetes since ten and now on dialysis gave birth to a little Boy who is totally blind . I can't tell you what a joy he has been in our life and how much he has taught me about life. My daughter struggles every day to stay a live for our Jonah. I know this little girl will bring you much joy along with much heartache. I know in my heart that you will handle this graciously you are a beautiful person. Blessings and hugs to all Sandra

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  60. Finding the joy each day is the best thing to do. That lovely blanket, stitching fabric together, sharing an hour with your DH, eating chocolate, fresh flowers for Eleni. Everyday beauty and joy.

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  61. I hope this is not too soon or too presumptous - have you seen this story? http://www.our-kids.org/archives/Holland.html

    A friend of mine posted it - she has faced a situation a little like yours.

    Here's to Holland - with warm thoughts for you and your family.

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