06 October 2010

The Things I Never Knew Before

You're making a brave choice, and for what it's worth -- I think, the right one.

The doctor who had been handling Ewan's case came into the room in his street clothes after the nurses had informed him of our decision to stop support and say goodbye to our son in peace. He put his arms around us, said he was sorry.

It was precisely this moment I dreaded when I was pregnant -- the one that, as I imagined it, made my blood pressure rise. I knew I couldn't handle it. I knew for sure I didn't have it in me.

But I was given so much grace for that moment. Whether you share my beliefs or not, you have to know it wasn''t my own strength that got me through it. I wasn't numb to any of it, and I wasn't in shock. I was given the grace to be fully present, both in my aching grief and in my acceptance of it. One day, I will write at more length about that night. Everything about it was sacred. Everything about it was so, so holy. It was not my strength. It was most definitely not my courage.

I had never watched anyone die before -- never been present for when one person passed from this life to the next. I had never witnessed the mystery. I never expected that it would be with my son.

Michelangelo's Pieta

It was only this morning that I remembered Michelangelo's Pieta statue: a marble carving of Blessed Virgin Mary cradling the body of her dead son. Though our circumstances were so different, I did that too, and it made me feel such a kinship with her. I know she was holding me as I held my dying son. And I know her Son was there with us, too.

Other things I now know:
I know what it is now to plan a funeral for a baby, to be asked to bring his clothes and pictures of him to the funeral home.

I know what it is to feel utterly powerless, to trust cardiologists, surgeons, and nurses with the life of my son. I know what it is to consent to them taking a knife to his body to crack open his chest. I know what it is not to be able to help him.

I know what it is to come home to a basket of folded laundry: his clothes, diapers, and tiny socks.

I know what it is to hear the most skilled doctors and surgeons say: there is nothing more we can do.

I know what it is to stare at the empty crib, and the closet full of baby clothes that he will never wear. I know what it is to weep bitterly.

I know what it is to have my breasts ache with milk for a baby who can no longer be fed. 

I know what it is to wonder why the sun dare shine, why the earth dare continue to spin, and why people dare go on smiling.

I know what it is to receive cards of congratulations and of deepest sympathy at the same time.

I know what it is to explain to kind strangers who witnessed my pregnancy that our baby is no longer with us.

I know what it is not to be afraid of what people might say. I have endured an entirely unmedicated childbirth with back labor, and I have held that dying baby in my arms just two weeks later. There isn't much that can rattle me now. I may be vulnerable and I may be grieving, but I still remember what the truth is.

I know what it is to welcome life into this world, and I know what it is to walk through the Valley of the Shadow of death at the next turn, and not to fear it. I know the grace that carries a person through that.

I never knew these things before. I never wanted to know them. I wish no one else had to know them. My imagining these things ahead of time doesn't even come close to the reality that is now, and that is to come.

To all the mothers and fathers who have walked this path before us: I honor you. I honor your bravery and your courage, and the grief you hold in your hearts. Ewan will always cause me to remember you and the children who were likewise taken from your arms.

* * * * *

Please grieve with me the fresh loss of another heart warrior. Jill and Shane have just lost their sweet baby Joshua who fought so hard for so long. Blessings and peace be upon them. Jill, I love you and my broken heart is with you. I only wish my arms could stretch far enough, that we could lean upon one another and weep together.


Leslie said...

I can only say, "Amen." Grace be with you, today.

Mary said...

I have been following Ewan's story from the beginning and praying for him every step along the way...and you as well. From one heart mommy to another, my heart aches for you. I have always loved the Pieta, we had a mini one in my house growing up (we are also Catholic) and I think the image of Mary holding Jesus is such a powerful one...the love a mother has for her child is something no one else can even imagine. I know she was there with you when you watched Ewan pass from this life to the eternal life...and I know she holds you now. And weeps with you as only a mother who has lost a child could. My thoughts and prayers are with you.

Anonymous said...


Might I say you are Beautiful, the grace you have been given shines so mightily in you that the sun is no rival.

With all my heart I love you, and knowing too, that you are cradled in the arms of the divine, am comforted for you, until you can feel that comfort yourself.


Ruth H. said...

This is a beautiful post. Thank you for putting all that into words. I just came to your blog for the first time after reading your sweet comment on Jill's blog. I am very sorry for your loss. My youngest daughter died two years ago, and I can definitely relate to all the things you've learned. I know how hard it must be for you now. If there is one thing I've learned about grieving, it is just take your time. Don't feel as if you have to hurry to put things away or get rid of the baby clothes you didn't have a chance to use. We left our daughter's toy basket next to the couch for months, and I think a lot of our friends thought we were crazy. But it just gave us tangible evidence that she had been with us, it was comforting to see those things. Everyone grieves differently, so don't let anyone tell you what you "should" do. Please feel free to come to me if you ever need to talk to someone who has been there.

Anonymous said...


Tears still fall for you, James and Ewan. Parents should not have to bury their children. I know you have not said (at least not in a very public way) about the services for Ewan, but I would like to send flowers. Ewan has touched my heart in a place I thought that was only reserved for my daughter. I would like to honor his life if only in such a small way.

Shannon Egan

Agnes said...

I am so sorry...I know there are no words to comfort you.
I can not imagine the pain you feel but being a heart mother I know the fear that comes with entering the “unforgiving” world of CHD.
God bless you.

Lisa said...


I remember standing in awe, late in the evening in front of the Pieta in St. Peter's in Rome, and thinking of the grief of Mary, and wondering what it was to know that sort of devastation. I'm so sorry that it is something you have come to know.

There are few words, so I'll simply say again that you and James are often on my heart, and I pray for Jesus the comforter to gather you close to him as you walk the valley of the shadow of death.


EllensCreativePassage said...

Beautiful post. I am so sorry

Ryan V. said...

I am visiting from megans blog, in this wonderful life, and I just want to say you are so, so incredibly strong. Your faith in God shines through you and through your writing. It's beautiful. Your son is beautiful. My prayers are for you and your husband while your grieve. May you also have peace.

Tiffany said...


Prayers and love to you.

Papillon Sky said...

When my baby died, I also hoped no one else would have to endure this. I hoped that my loss would cancel out a few others around me. I remember hoping this when a friend's one year old boy died a few years back. I hoped that it meant I would not experience a loss too--because what are the odds? But then four years later I did.
And you and I had almost the same due date (there were two other Flickr mamas due then too), so I figured none of the rest of you would lose your babies. And I was so relieved when you all had your babies. And I still think about you throughout my day and wonder why you had to experience this too. Every day I prayed your baby would make it and you would not have to endure such pain.
I am so very sorry you are. It is shocking to me to find out how many women have had miscarriages, still births, or infant deaths. It's like some secret society and you only find out about their losses when you have yours. And then they are everywhere.
But I was so glad to see them--these women who somehow made it through and were going about their every day lives. They never forgot those babies but they found the strength eventually to endure and to find joy again. It gave me hope that I would make, even though some part of me was sure I wouldn't.
I hope my baby Rosie is now holding your dear Ewan's hand in Heaven.

Anonymous said...

Kirsten, I lost my son, age 39, to a fatal heart attack, almost five years ago. The Pieta statue in my home was my comfort knowing the grief of our Blessed Mother. You will feel the comfort of your family and friends prayers, and your strong Faith will get you through this. Love and prayers, Marcia, Spring Lake, MI

Katie said...

Your words are so beautiful Kirsten, as are you. Much love, prayers and hugs for you here. I'm so sorry.

Pineapples and Pickles said...

Your strength is to be admired.

Tina said...

I feel like you climbed inside my mind and read my story! I am so so sorry for your pain, your loss and the fact you have to wake up one single day without that precious baby. It has been almost 14 years since I lost my baby girl and after reading your post it was like it happened yesterday I could feel the pain in your words and I am hurting with you. Without the loving hands of our wonderful God I dont think this kind of pain would be possible to survive. Hugs to you from Idaho.

melifaif said...

Your words are beautifully written and heart wrenching at the same time. Your pain. Unimaginable. Prayers still flowing your way. Your peace and understanding is of such comfort.

Nadine said...

I hate CHD with such a passion I cannot even say. My prayers are with Jill and her family...I am so sorry for their loss as well!
Kirsten, you are a beautiful person and I am so glad that I have gotten to know you! You inspire me to be a better person and strengthen my faith and trust in GOD's plan, no matter what his plan may be! You and James and sweet angel Ewan have and will continue to touch so many hearts! Love you friend,

Michelle said...

Thank you for your honesty Kirsten. I am so sorry you know what it is like to walk in the shoes of a mother who has lost her baby. To weep tears from your breasts...

Thank you for being so honest and brave, for putting a face to this nightmare.

xoxo Michelle Williams

Heather said...

I have never physically met you, but you and that sweet baby Ewan captured my heart during his brief time here. I just wanted you to know, that I have never prayed so hard for anyone or anything in my whole life. The news of Ewan's passing is devastating. I couldn't even bring my self to read your posts until this morning, and I feel like such a coward because this is your reality. I am so sorry that you have to know all of these thing that you never knew before...

annamarie said...

So beautiful. Thank you for your grace and strength. Please know that little Ewan has touched so many lives. Every blessing to you...I hold my own family closer tonight after reading your words. XOXO Annamarie, Eve's heart mom (and the Facebook.com/1in100 family)

Annie said...

You are so tenderly in our prayers. Ewan is such a beautiful sweet baby and will continue to bless the lives of so many people. Thank you for sharing this part of your life with all of us. May you continue to feel the sweet powers of Heavenly Father touch you and your husband as you go through your trial. We love you and sweet little Ewan.

{andthisiswhatshesaid} said...

What a beautiful story. My heart is pouring with love and prayers for your family. Ewan is a beautiful baby, so pure and precious that the Lord called him back to be his Angel. Please know he is in good hands. My father is up there, and I am sure rocking him right now. All my love and prayers.

Mrs. Dole said...

So very sorry for your loss. May you find peace and comfort in the arms of Jesus.

Praying for you,
Tracy, our Jethro has Ebstein's Anomaly and Pulmonary Atresia

Sarah said...

Kirsten, We've never met, but I just saw the post on Becoming Sarah today (no, I don't know her either), and I have spent every spare moment today reading your story and hugging my babies a little bit harder and longer through my tears. My heart goes out to you and your family. God bless little Ewan.

Kristin said...

And I honor you today....not having walked this road specifically I have no words that seem appropriate...but I feel honored to read your heart here and to know your son. Bless you.

terri said...

it's hard to believe a body can hold all of that without breaking into a million pieces. jesus, hold my friends together by your love and power. thank you for the ways you are showing up for them.

love you.

HennHouse said...

Achingly beautiful, Kirsten.

Still loving you.

And praying.

Lisette said...

This is such a sad but beautiful post. Being a loss myself I can relate to it so much.

Praying for Joshua's family


SimplyDarlene said...


prayers continue...

mandi said...

I know you don't know me, but my heart breaks for you and your family. I have prayed for your strenght, comfort peace and direction since I found your blog. I can't imagine your pain. I love my babies, but because of your story, I cherish even more every smile, snuggle, and waking moment of their lives. Thank you for your bravery in sharing your story with the internet world. I will keep praying for you through the next few weeks as you go through all the you have to do. The Lord BLESS you and KEEP YOU!

chichel said...

I lost my Colin when he was 109 days old. He had several CHDs. He was on ECMO right after surgery. He had a thoracic duct ligation and two cardiac caths. He never came home.

In silence I sit with you, but my heart is screaming and aching and raging for your loss. I have followed your story and have known what you're going through--not what you're exactly feeling--but the steps of losing him. I know them. I, like you, wish I didn't.

Bless you and your family.

Heather said...

beautiful. a beautiful post, a beautiful faith, a beautiful heart. thank-you.

<3 heather
mom to asher (HLHS)

christianne said...

Oh my goodness, my friend. My arms rippled with goosebumps throughout the reading of this post. You know so much more than most of us walking this earth will ever know at all. It amazes me, this knowledge you now carry with you at all times.

I hate this knowledge for you, even as I know it is being turned into beautiful by all the lives this story is touching. I hate it still. I don't want you, as my friend, to have to know it. I don't want you to carry pain at all.

You carry a wealth of wisdom and stories in you that I am sure will be unpacked only with time. Already you have shared much of it with us, but I know there are bottomless depth to which you can continue to go with all of this, so much to plumb and mine in your heart, that tender heart of yours.

Sending all the love I have to give your way, that it would wrap itself around you and hold on tight.


Sarah said...

I hate that you know these things, even though I know God is sustaining your heart through all of this. I've prayed for your heart when confronted with Ewan's things so many times, and I continue to pray. I love you - I can't imagine your pain, and I love you.

ANewKindOfPerfect said...

Kirsten, I have no words ... only the thought that I hate this for you. I am so sorry.

Maryann E. said...

I'm praying for you. I recently experienced a death in the family--nothing at all like what you went through, someone much older--but when the grief gave me terrible insomnia for three days straight, music helped me a little. It seemed to slow down my breathing and thinking enough to rest for a few moments at a time. Just mentioning that, for what it's worth.

Melissa Angert {All Things Chic} said...

i just discovered this blog today and spent some time reading your journey.
i am so, so sorry for your loss. i pray that god would hold you tight and walk your family through these next months. i pray that you will feel his peace - that passes understanding - and know that your baby is with his king, feeling no pain - only joy. i pray for sleep, for rest, and for help when you need it.
again, i am so so very sorry.

Wayne and Sue Rasmussen said...

Thank you for sharing your heart and faith in the middle of your very personal crisis. We will continue to pray that God sustains you with his peace as you travel this road of grief.
My heart aches for you & James, and additionally for Jill and Shane. Unfortunately I can't tell them because apparently there are some people out there who don't know how to keep quiet with their hurtful thoughts. However, perhaps Jill & Shane will read your blog and can know that we are praying for them too.
God bless,
Sue & Wayne

Andrea said...

I just was sent your blog today and I am so sorry for your loss. My heart aches for you and your beautiful and heartbreaking words bring tears to my eyes. Ewan is beautiful and I know he has touched many lives and will never be forgotten. You will be in my thoughts.

Gina said...

Your strength is awe-inspiring.

Praying for you.

Anonymous said...

I cried when I read your list. I'm so very sorry that you know these things. These are things that a parent should never have to know but yet some of us do.

I agree with what "Papillon Sky Photography" wrote, I too somehow thought that the loss of my girls would somehow be enough and that no one else should have to go through this journey.

I'm so sorry.

With love, prayers and hope

Mama B said...

God love you and keep you close. I am crying for you and rejoycing for your beautiful baby boy. He is now in my heart as well.

Unknown said...

Hugs and prayers for peace and strength. Your posts are so beautifully written and touched me deeply. Thank you for sharing your story. I will be praying for you family.

lindsey_marsh77 said...

My heart hurts for you and all those that loved that sweet boy so much. You and your family are in our prayers.

Jessica said...

My Mom and Dad have walked down the same path you have. My sister (whose 29th birthday happens to be today) was born with a few anomalies that were not life threatening. But as she got sicker and sicker, and they did more testing, they realized that she had a bunch of cardiac defects. At this time - 1981 - there was nothing they could do for her cardiac wise. My parents made the decision to let her join the angels on her 18th day of life.
I was born a year later. Years later, my cousin became a NICU nurse. I am also now a NICU nurse, and have been working as one for the past 5.5 years. I work in the exact same unit that my sister spent her short life in - a few of the nurses that took care of her are still working along side me know.
How many people will Ewan have inspired? My guess is a lot.

Heather and Adam said...

As an expectant mother of an hlhs baby due in dec ivebeen following ur blog for two months now I am so deeply saddened by ur loss of precious ewan. U have been such an inspiration to me u have given me so much hope and strength. I will continue to pray for u and ur family and of course the family of sweet joshua as well. God bless

Wendy said...

I'm so sorry for your loss. I just can't imagine the pain you're feeling, and I'm so in awe of you for being able and willing to share your pain through this blog. I have two angels in heaven myself. I lost them early in pregnancy, so I never had to watch them suffer through painful medical procedures. I didn't have to watch them die. I, too, wish that no one else ever had to know what it is to lose a child. It just shouldn't happen. As a previous poster said, it's as though miscarriage, stillbirth, and infant or child loss are part of a secret society. Until I experienced my first miscarriage I was unaware of the number of women who go through it every day. Having had a friend who experienced a stillbirth, I was aware that it was a possibility, but never thought it would happen to me. It can happen to anybody and, unfortunately, there's usually nothing you can do about it. Continuing to keep it hush-hush makes it seem as though it's something shameful. My hope is that more women will share there stories, as you have shared yours. I believe this will go a long way in making our society more accepting of the subject, and help women to know it's not their fault. God bless you for your strength, and know that Ewan is waiting for you and wanting you to find happiness. I'll be praying for you and your family, that the love of our wonderful Lord be there to support and uphold you in the painful days to come.

NovaNalu said...

I'm crying so hard for you right now. I'm crying for you and I'm crying for me. It was a little over a year ago that I experienced the same feelings. I know how it is to have the 1% scenerios happen to your baby over and over. I have thought those same thoughts about my breasts aching and leaking milk for my baby who was no longer here....to come home to a perfect nursery and wonder what I will ever do with her clothes. I remember thinking that people (even though they were strangers) had some nerve to laugh and dance and sing and have fun when my baby just passed away. Reading this from you brings it all back, and I now ache for you while aching for my beautiful daughter. I'm glad you got to be there with him as he passed. I wasn't given that option at our hospital, and not demanding it is my greatest regret in life. I pray that you continue to find this strength that you have. I found mine in the toughest times, and when I didn't have it, I did artwork. :) God bless you and your beautiful baby. Thank you for sharing your story and your strength with us. You are not alone.

Heart HUGS,
www.facebook.com/littleliondesigns - in memory of Kaia Belle Urban

Unknown said...

Hey all:
I am expressing deepest condolences at the loss of baby Ewan.
I prayed earnestly for his recovery ...
I empathise ...
I lost my baby, Jonathan to HLHS also. He was three weeks old- So strong ... so hopeful. He wanted to live ...
In a third world country like Jamiaca , you don't know ... the death is sudden and tears your heart apart...
Thank God for you and how you were there for Ewan ; how you fought; and how you ended the fight ... truly valiantly;
Live your life for that day when you will reunite with him, when, in my opinion, I believe an Angel will intoduce him to you, as your perfect son, Ewan...

Love always ... to the three of you and your families and friends,

Althea Brown and Family

Gberger said...

Dear Kirsten,
Your blog is beautiful, as is your precious Ewan and your dear husband. I am so sorry for your loss. deb's blog sent me to yours, and, having walked some of the path you are describing, I had to leave a note for you.
Our daughter was diagnosed with stage 4 cancer, 4 years ago tomorrow. She was treated at Seattle Children's Hospital, and spent time in the ICU next to where Ewan stayed. We loved the staff there. They did everything they could for us, but Katie passed away in August of 2007.

Mary, the mother of Jesus, has taken on new meaning for me, too, since Katie was diagnosed with cancer. Your photo of the Pieta is deeply moving; images of Mary & Jesus have been such a comfort to me on this journey.
Please accept my deepest sympathies and prayers for comfort for you and your family.

Sheila Palaruan said...

My heart aches for you, so very much. Thank you for beautifully putting to words everything that has been in my heart since we too lost our infant daughter, and our only child. She was born on August 23rd. I wish I could take this cross from you, and I wish the outcome were different, but please know that you and Ewan have constantly been in my prayers. Each time I pray for my daughter, I pray for your son. And, each time I pray for God to give my husband and I strength, I pray for him to share his strength with you. Peace be with you and your family, and thanks again for sharing your story.