Wednesday, November 6, 2013

To my sweet Cora, on her birthday


To close Cora’s funeral we chose to sing the famous gospel hymn, This Little Light of Mine. I’ve been thinking about those words in the weeks and months since that day. From the moment Cora was born, we were presented with very few true choices; none of the good ones at least. But there was one choice I could make, and I made it a couple of months into our journey: Cora was my little light, and I chose to let her shine.

In the space since her death there is nothing to do but remember. And in remembering, there is rehashing, reconsidering, doubting, regretting, praising, being grateful, being filled with despair. And I can see that as I meticulously comb over each memory I have, what I’m really trying to do is manufacture more time. For all the ways that I feel Cora’s life was perfect, exactly as it should have been, I will remain soulfully disappointed for the rest of my life that, no matter what I do, I can’t create more time.

I’ve often questioned our decision to let her go, that Thursday surrender when we changed our course from trying to heal Cora to deciding that she had been through enough. I don’t doubt the decision itself. When I look at the facts, the undeniable facts, things are rational and clear. Our girl faced challenges that were beyond human power; they could not be fixed, and they were piling up on each other and the pile became so overwhelmingly large that it snuffed out all the hope. Throughout Cora's life and everything we went through, we endured it because we lived with the hope that one day life would become easier for Cora, we dreamed that the troubles would pass, we dreamed she would live. And so when those two doctors we know, trust and love sat down with us on that Thursday to say the hope was over, we surrendered easily and out of deep respect for the girl we loved so fiercely.

But of course I rehash that decision every day. I toy with it like a rubik’s cube, endlessly fiddling with it to try to make all the squares line up, to see how it could have worked out otherwise – to end up in whatever universe would have allowed the chips to fall in the way I wanted them to.

As a parent, your primary job is to take care of your children. You’re handed these little beings, with really no one supervising, and you’re tasked with growing them and showing them this beautiful life. I know I loved her, and I know I showed her as much of life as I possibly could. But to me, those eight and a half months will always be too short. I wanted more.

Another thing that I do in the time since Cora has passed is replay the night of her death over and over in my head. Not to drown in morbid misery, but because ironically, it was a time of great peace and comfort. There was laughter in the room, the presence of dear friends, and the very clear knowledge that this life here on earth is actually the much smaller part of what’s going on in the spiritual world at large.

I could see that very clearly.

Cora walked us through that night, modeling grace, acceptance, and profound love, just as she walked us through every day before. With her in my arms it was impossible not to feel that the universe was a divinely compassionate place, that all was exactly as it should be, and that I was loved implicitly, exactly as I was. After she died and my friends and I all passed her around, spreading that amazing feeling from one of us to another, long after that, I held her naked little body on my chest like a koala. I put my cheek on her head, one hand holding hers, and the other on her back, which stayed very warm for quite a long time. I sat like that for hours.

It was one of the most beautiful experiences of my life.

When sadness hits me hard, I think of that. Of the peace that washed my heart that night. The feeling that I had succeeded as a mom, that I had lovingly shepherded that fierce little spiritual warrior through her life. It didn’t look like what I expected or what I wanted. But I had this one job, to love Cora through life, and I had started and finished that job well. What a thing to watch your child enter the world, and to watch her leave. And to have an integral role in both.

In the world since Cora died I am left with many feelings, too many feelings most of the time. But by far the biggest feeling is that of great pride.

I’m so proud of you, Cora, for the way you changed the world by changing, one at a time, the people around you. You showed me just how big life is. How love is at the core of everything. How important it is that I try to pass that love around to others, as much as I possibly can. How it’s the inside of things and the heart of it all that make life worthwhile. Because you were you – your beautiful and true self – I hardly noticed how sick you were. Your body was such a small part of who you were and are.

How I wish you could be here with us still, yet somehow free from pain and struggle, just lying on the bedroom floor next to Dominic and Cosette, or dressing up with them for Halloween. They were Peter Pan and Wendy Darling, and they desperately missed their Tinker Bell. Every experience, no matter how joyful, is somehow just short of its best without you.

But life goes on, in all its brave glory.

Dom still sleeps with the five pictures of Cora taped to the wall where he sleeps. We still ring a bell every night and say goodnight to our angel, our missing piece. The other day Cosette said, "Cora died, and that's okay except that I really miss her." That probably sums up how we all feel, arguably better than anything I could write here.

Sweet Cora, I accept that you had a special kind of lifetime. That you lived your life, that you weren’t gypped, that we didn’t get wronged. We were in fact, all of us, righted.

Happy birthday beautiful baby. I’m so glad you were my little light, and that I let you shine.

For those who knew you, you lit up the whole world.

68 comments:

  1. Yes you did let it shine, and it still does!

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  2. Beautifully written Michele... Happy Birthday little Lionheart

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  3. Happy Birthday Sweet Cora,
    Your light still shines and will for a very long time; thank you for sharing yourself and family while you were living on earth.

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  4. Cora Vivienne, who changed the world. Love to her and her family.

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  5. I was guided to this blog from Momastery and I'm so glad I read this. I am getting close to the date my father passed away in the ICU (Nov 14th). Although it was a parent, not a child I lost, I had some of these same thoughts and feelings. Thank you for sharing your story. May your heart be filled with peace today. It helps knowing someone else is out there feeling this way.

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  6. So lovely to hear your words again. I still think of your story often and wish you and your family peace.

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  7. What a beautiful tribute to your little girl!

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  8. Thank you so much for sharing your words and your story with us - I hold your precious family in my thoughts and prayers today.

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  9. Beautiful little Cora changed her corner of the world. May joy and tenderness and blessings rain down on your sweet family.

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  10. Praying for peace and love in your heart. Happy Birthday to your precious girl.

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  11. So beautifully written. Praying for you today.

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  12. I found you today from Momastary and just read through Cora's amazing story. I am so sorry for the loss of your precious girl. Sending your family love and prayers.

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  13. Your blog was posted in our Share of Lancaster Facebook group, and I instantly felt a connection to you because of the precious name of your baby. Our twins died of prematurity in 2008. Our rainbow daughter, born in 2009, is named Vivienne. Yes, spelled just like Cora Vivienne. Then, in February of this year, our second set of twins was born - - and we named them Jack and Cora. Yes, Cora, like your Cora Vivienne. I am crying as I type this. How can this be?! I will carry your Cora Vivienne in my heart each and every day. Thank you for sharing her light!

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    1. That's amazing. Thank you so much for sharing that story, and for opening your heart to our Cora.

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    2. One other thing we just picked up on - Vivienne's middle name is Michele, spelled just like your name. We are connected.

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  14. I have a little Cora who is 4. She was named after my grandmother who is in Heaven. Your Cora is in excellent company. I will hug mine extra close tonight and we will say a prayer for Cora the Lionheart and her family.

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  15. thank you for sharing this, it impacted my soul. I lost my mother in June and although I know that this grief is not comparable to losing a child I can relate all too well to the struggle that comes in the midst of making this choice for your loved one. she had an advanced directive and did not want us to fight for her, so we let her go. And you worded it perfectly that although everything is logical and clear your heart still wonders debates and tries to pull apart the pieces to make them line up. I have tried to explain my feelings to others about letting her go and no one can really understand so I thank you for sharing your thoughts on this because I know that I am NOT the only one who has felt this way. Thank you for your openness and vulnerability. Cora's light does shine on.

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    1. Thank you for sharing this here. Love and understanding to you.

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    2. Michelle, My heart goes out to you and your whole family. What should be a day of celebration must, by any stretch of imagination, be one of the hardest to bear. I am so privilaged to have been a part of the hundreds of people who followed your touching blog, so I really FEEL I know Cora. Many tender, loving hugs to you all.

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  16. I send love and strength to you and yours today and each day.

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  17. We do not know each other, you and I. But, as mothers, we both know love. I am sending some your way this moment. May comfort surround your beautiful family as you remember your sweet daughter.

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  18. You spoke eloquently of what I am going through right now. Although my son was 29, he battled cancer, which got the best of him a month ago. Everything you said, I share. I spent my nursing career in NICU so am seeing many sides of this experience. I am so proud of my son's fight, but wouldn't want him to suffer just so I can be with him longer. It is as it should be, no matter how painful to the living. Thank you for putting this in such true and honest words. Your love shines in this piece. My best to you and your family.

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    1. My heart goes out to you. Thank you for taking the time to comment and share a tiny bit of your story. It makes me feel good knowing we can connect through shared feelings. I will keep you in my thoughts with love.

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  19. Michele, it's so nice to hear your voice again... I think of you and Cora often. A very happy birthday to your sweet girl.

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  20. Michele, this is so beautiful and true. Thank you for being brave and sharing it with us. I found you via Momastery, and I am so thankful to have read your words today. I was out of perspective, and you and Cora put me right back into the center, where, "...love is at the core of everything." Thank you.

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  21. Dear Michele and Co., I'm a pediatric palliative care nurse practitioner, and have been given the distinct honor to care for families throughout the lives of so many children, some of whom surprise us and continue living, some of whom have died. As you know, this is often left to the children, our most graceful teachers. Not one parent doesn't second guess their choices. It is normal. However your willingness to share Cora's journey with us is nothing short of extraordinary. Much love, and thank you.

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    1. Thank you for this beautiful comment. You are doing amazing work -- thank you for caring for all the families like ours, and thank you for sharing today.

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  22. This is the most beautiful and touching thing I have ever read. Happy birthday to your sweet Cora. It sounds like she changed the hearts and lives of everyone she encountered. I will say a prayer for the peace of your family today.

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    1. Thank you for that love. And for the prayers too.

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  23. I didn't know your sweet daughter, her story and honestly had never heard of the angel who is called Cora Vivienne until this post. However this is the most beautiful thing I've ever read. What a blessed little girl to have a mommy who loves her so. I'll never here "This little light of Mine" again without thinking of your daughter. Hugs and Prayers...

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  24. Just learned about you today, but you have done a great deal of healing and your children will gain from it. YOU are right you were RIGHTED...

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  25. I have been a Monkee for about a year now and I just saw your story posted on the Momastery facebook page. It stood out to me because the name you gave your daughter is the same name we chose to give to the little one that we lost just a few weeks ago. Our stories are a little different; Our little one was diagnosed with a VSD, Aortic Stenosis, and Coarctation of the Aortic Arch when I was 24 weeks pregnant. We were preparing for what we imagined would be a lot like what you described your daughter's life was. Only, within a few days of her initial diagnosis, an amnio revealed that she also had Trisomy 13. We were told that if she made it to birth, surgery wouldn't even be an option because her diagnosis was "incompatible with life." We had to make a similarly heartbreaking choice to let our daughter, whom we named Cora Elizabeth, go. I know what a horrible feeling it is to have the weight of that decision placed in your hands. I struggle with it every day, but my only consolation -- and I hope it is yours too -- is that our Coras will never know another day of pain or suffering.

    Thank you for putting your story out there!

    Meghan

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    1. God bless you. What a heartbreaking journey you've been on. My thoughts and prayers go out to you. Thank you so very much for reaching out with your story and showing me just how connected we all are.

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  26. Happy Birthday, wonderful Cora and love to the entire family. Continuing to wear colors and hearts in celebratory memory!

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  27. Thank you for sharing this. Your story is so full of warmth and love, and bravery that only mothers and fathers know. I myself have a sibling with severe congenital cardiac defects, and although he is living a full life today at 28 years old, his survival has been a challenging and remarkable journey. I remember distinctly laying in his hospital bed with him after many open heart surgeries, just like the pictures of your other two sweet children.
    I'm certain that my experience having a sibling with such challenges has formed who I am today, especially as a mother. Some say that those dark moments when my brother was so sick were moments of my childhood that were robbed, but I truly believe that they were a gift- to know how precious life is, and to see my own parents love deeply and bravely. It is clear that Cora has had a profound impact on your other children, but you are certainly showing them how to live and love fully, and I wish them all the best.

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  28. Thank you so much for sharing Cora's story. May the grace and peace and hope that walked with you each step of this journey be ever present and palpable to you today.

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  30. Happy Birthday Cora and thank you so much for sharing your story. Reading your blog touched my heart more than any other blog and thank you for making me appreciate my day a little bit extra and sending an extra thought to all those who are not with us. Love from Sweden.

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    1. Thank you for showing me just how far Cora's love reached.

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  31. What a beautiful and heartbreaking post. I don't know what to say, the feelings are so deep ... only that I am a better person for having read this. Thank you for sharing this. You are in my prayers.

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  32. Happy birthday sweet girl! Thank you for sharing your life story with us!

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  33. So incredibly beautiful! I too am at a loss for words. Just feel so grateful to read this amazing tribute. We also lost our precious baby - one year old Andrew - 14 years ago. His light and Cora's will shine forever. Much love.

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    1. I am so sorry for your loss. Thank you for reaching out and connecting with me.

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  34. Wow. And through this, Cora has touched me, and opened my heart a bit more. Thank you.

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  35. Her light is still shining... and making yours ever so bright. Beautiful. Thank you for writing this.

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  36. I learned about your Cora through Momastery. I read everything you wrote tonight. Thank you for sharing her with us. Happy Birthday Cora. You are loved little angel. You are most definitely loved.

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  37. Cora, the lion- and true-hearted: thankyou to you and your mama for allowing me the enormous honour of getting to know a little of you today. Happy, happy birthday, gorgeous girl.

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  38. ...this came to me at a needed time..how kind you are to bare your soul and grief that we might learn...I have lost six life long friends and my mother this year..so much sadness..and I see this and think how do you go on sometimes?..the secret I believe is that Cora's light now shine's along side yours..her light makes yours brighter and stronger..thank you for being so brave..GOD chose the perfect mother for Cora..what an honor..

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  39. Happy Birthday, Cora! I saw your post after a friend shared it on facebook. We will be celebrating our son Thomas' 2nd birthday next week...he died when he was two weeks old from hypoplastic left heart syndrome. I know these milestones are so hard....I'll be remembering you in my prayers.

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  40. What an absolutely beautiful piece that moved me tremendously. Happy Birthday, Angel Cora

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  41. Thank you for sharing a perfect tribute to a perfect girl. Cora will forever be in our hearts, and help us appreciate every moment we have with our own.

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  42. I came across your story from the Momastery blog that I love to read when I have the chance. I then proceeded to take my "2-minute break to check the computer" break into sitting here and reading the entire amazing story of your amazing Cora... I dont have any profound words but I just felt compelled to comment to tell you thank you so much for sharing Cora with us! I will forever remember Cora and her loving family... And your little old soul that is your son - I will forever pray that he can find peace... losing the "person he was supposed to marry". I think I cried hardest at that part... what a sweet and innocent response... Not that I dont try to savor every moment with my four sweethearts already, but this certainly puts life in perspective and sometimes thats what we all need... to hear such an incredible journey of such a giant little spirit that is Cora - thank you for sharing and God bless...

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  43. Thank you for sharing your sweet Cora with us. I also found you through Momastery and your family sounds so eerily familiar to mine, except we still have our happy, healthy, third child because we seemingly drew one of the 'good sticks'. We have a 4.5 year-old 'old soul' son, a 2.5-year-old tornado of a daughter and then we have our sweet Silas, who will be 3 months old in 2 days. I have never felt so blessed by, and yet so sad for, your family. I know that Cora fills your heart with joy, but it's so devastating that you lost her. That photo of your son looking at the storyboards shattered my heart. He reminds me so much of my oldest boy and I just can't fathom getting through something like this. I know that Miss Cora is your little "Lionheart", but Momma, I believe she inherited that lionheart from you. I stand amazed and I kneel in prayer for you all.

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  44. Happy birthday to your sweet Cora. I lit a candle for her last night . . . no doubt about it, her light shines forever.

    My husband and I chose to make a similar heartbreaking decision when our sweet baby, Tessa, was just three days old. I never could have imagined saying goodbye so soon to my first daughter after carrying her for 9 seemingly perfect months. Our whole world was turned upside down, but she brought so many people together and created so much love in THREE days. Your sweet Cora . . . well, I can only imagine the impact she had in her months here. Her story and your strength are a gift to all of us. Your words so beautifully reflect so many of the thoughts and feelings I have had since Tessa died.

    I'm so sorry you had to celebrate her first birthday without her. Please know she will not be forgotten.

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  45. What a touching tribute to your sweet baby girl. Cora touched many people with her story via your writing. Happy Birthday dear Cora angel. You will always be remembered.

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  46. She was so beautiful... Your words, her sweet face in your pictures... I am thinking of you all. Her spirit will live forever in you all.

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  47. Your courage and generosity of spirit continue to make Cora's life a blessing to me and so many others. May her memory continue to bring healing and inspiration to you, Jason, Dominic and Cosette.

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  50. Dear Michele,

    I found your blog through a mutual Facebook friend, and I found it today, on this week, of all weeks, Cora's birthday week. And I really feel as if some of Cora's Magic must have called me to connect with my intuition to read this today. In a time in my life where I am struggling to remember to feel hope and joy, your writings of Cora's spirit and soul has touched mine deeply, and It has washed over me like unconditional love and peace itself, and it has made me feel better. It has touched that place in me , in my heart, soul and being, where joy touches sorrow, and makes me grateful for the ALL of it. Thank you from the bottom and center of my heart and being for sharing your experience and Cora's light with me and the world. Sending infinite love, light and prayers to all of us connected through the strings and chords of Love that connect us all, and remind us we are not alone. Thank you.

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  51. Thank you for this beautiful post, Michele. I appreciate you and your shining light. And, again, I am SO sorry for your loss, our loss, of dear, precious little Cora.

    Love, Keith

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  52. I continue to hold space for you, Michelle, and your sweet family. There is a window that I pass every night on my way to bed and I always check to see if I can see the moon shining brightly and when I see it, I think of Cora and you and the beautiful story you told, because I saw that moon in July when you shared those beautiful, dark days. And, so, Cora's light shines on and her strings still reach us. Peace to your heart, sweet mama.

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  53. Isn't it amazing that Cora lit up the world, even for those of us who didn't truly know her?

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  54. Michele, I've read and reread this so many times. It is more beautiful and more meaningful each and every time I read it.
    Thank you. Love and hugs, joyce xxxx

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