Sylvie with Jordan, "...a gift from Sydney."

In August of 2009, I connected with a lovely mother, Sylvie Stephens, through my Nathan’s Prayer website.  Her baby daughter, Sydney, was a patient at Children’s Hospital in Minnesota.  Sylvie and I exchanged long emails over a period of time as we hoped and prayed for Sydney to be healed as she battled a congenital heart defect associated with scimitar syndrome.

Since my own son, Nathan, had gone through surgery for scimitar syndrome, I became intensely interested in Sylvie’s plight.  Oh, how I wanted a miracle for Sydney!  Tragically, Sydney lost her battle on September 16, 2009.  I have never personally met Sylvie; our communication has been strictly through email.  Still, I spent much of that day in and out of tears over the loss of that sweet baby.

Then I prayed. Not for Sydney.  She was instantly swept into Heaven’s blissful embrace.  I prayed fervently for Sylvie.  I prayed that God would give her strength.  I prayed that she would receive supernatural comfort and peace.  And I prayed that one day God would bring her great joy and happiness.

Well, there is, indeed, joy in the morning! Weighing in at 6 lbs., 13 oz., little Jordan Tieszan was born on 3-11-11, just 3 days before the 2nd anniversary of Sydney’s birth.

Sylvie and Sydney

“It’s been so healing to have Jordan,” Sylvie reports.  “Sydney is always on my mind and in my heart. Jordan is such a joy and a gift from Sydney!”

How did I keep my faith during the last year after all I’ve experienced? This is what I know to be true: I had to keep my faith. Without faith in these kinds of situations, people die. Spiritually, mentally or physically, there is grief powerful enough to kill, to transform negatively and permanently. Grief can harden a soul forever, it can cripple a mind, it can stop a beating heart. Faith not only helps us survive, it helps us to live, which is different than merely existing.

But I continue to process the death of my daughter. This is pain that just won’t go away! I can still function. I can control my emotions and crying in public. I can keep a conversation about Sydney flowing, talk about everything she endured with a sense of pride. I am the mother of a strong and brave child. I can keep a smile and an even tone. And it’s not about masking what I feel. This is just the way it is. This is how I live now. But when I am alone and feel appropriate to let the tears flow, they do. And I ache, I physically ache, to hold her, to kiss her. The miracle is, that despite the hurt, my heart remains open to accept God’s healing, prayer from friends, and the unconditional love that is continuously supplied to me by my Sydney, even now that she is no longer physically with me. She is the love of my life!

But Mother’s Day is still on my mind. Not as the anniversary of a terrible discovery, but as a pending, unanswered question of my status as a mother. I am still a mother, after all. But what will my Mother’s Day be like without a child? I have no idea. But I celebrated Sydney’s birthday with joy in my heart, and I have a feeling Mother’s Day for me will have the same tone.

Birthday blessings, sweet Sydney.

And today, no surprise to me at all, it’s SUNNY! Of course it is. It’s Sydney’s birthday. “Baby, sunshine for your birthday!” But really, she got the sunshine for me. She was my sunshine. She is my sunshine. I wonder, really, who is this day for, her or me? She was my gift, and this day is a celebration of her. She was the greatest. And she was all mine. This is my day, too!

I was in labor one year ago today. Sweet little Sydney was being “kicked out” at 41 weeks per a planned induction. I went out the night before with Katie to one of my favorite restaurants. I wore heels, jewelry and make up. I had a filet mignon and ate every bite, and our server treated us to dessert.

The day she was born was mild and sunny. The labor and delivery room had an open window, and a fresh breeze filled the room.

Within a couple of hours of her birth, I went upstairs to the special care nursery to nurse her for the first time. I remember holding that little baby in awe and wonder, looking at all that dark hair, and thinking, “she’s mine!” She was so sleepy and tired. And I wanted her to open her eyes to see what color they were. In the coming months, I would waken my sleeping baby often to see those blue eyes.

I have every memory of that day in my heart, I have Sydney with me always. I am happy. I am at peace. She is with me and at home, and I am in the city where she lived and died. That same breeze from her delivery room is in the air. A gentle wind that carries the promise of a good life and a beautiful spring.

Love,
Sylvie

If you have a concern regarding caring for a terminally ill child, Sylvie Stephens welcomes your questions.  Post your thoughts under comments or go to the Contact page to “Ask Sylvie.”

Sweet Sydney (photo courtesy of Now I Lay Me Down to Sleep)

The anniversary of the best day of my life is approaching. Sydney’s birthday. Next Sunday, March 14 at 5:45 PM will mark the day that beautiful baby came into my life.

In my mind, I imagine what she would have been like as a healthy baby if she were alive right now. She’d be walking. I would protest that she was still a baby and not a toddler. She would run to me smiling. And I would pick her up, kiss and hold her close. I would whisper secrets in her little ear.

I would make up stories, just for her. She would gaze at me with wonder in her eyes. In her own way, she would tell me things and show me things. I would dance for her and with her, I would make up songs. She would run after Anakin, and he would let her gently tug on his tail. I would then say, “love the animals, baby,” and she would pet him gently, and look up at me for an approving smile. We would go to Trader Joe’s to shop together. I would say, “Look baby Peanut, pink tulips!” And I would talk to her all the time.

She would sleep, and I would check in on her. I would watch her sweet slumber; closed lids with long eyelashes.  Her hair would be growing in soft, blonde tendrils. And my favorite moment of each day would be when she opened up her blue eyes in the morning, and reach for me to get her.

The snow is starting to melt. At night, the melted snow re-freezes to ice, almost like the Frozen Tundra that is Minnesota can’t let go of the winter. Grief is like that. It starts to transform, then goes back to its original form. But then eventually, flowers bloom. Spring will come.

I don’t want to be sad on her birthday. I want to celebrate her life, however short. I want to celebrate that I was with her for each one of her 186 days, and that she and I were together, just us, from June 2008 when she was conceived to the day she was born. I would talk to her all the time then, she was with me then, but I couldn’t hold her or kiss her. I carry her with me much in the same way now. She is always with me.

But no, it’s not enough. It will never be enough. My heart aches for my daughter. I miss her so much.

Today I bought pink tulips- I have them in bud vases all around my apartment. A sweet reminder of my Sydney, my life in “Holland,” and how she changed me, changed my heart forever.

Love,
Sylvie

Sylvie Stephens spends precious time with her daughter, Sydney.

Sylvie Stephens’ journey with her daughter, Sydney, has been such an inspiration to me. When it became clear that Sydney was heaven bound, God’s grace took over and gave Sylvie the strength to fill her sweet girl’s days with love and happiness.

Sylvie is not the first nor will she be the last parent whose time on earth with a beloved child is brief. It occurred to me that God has blessed Sylvie with a generous spirit and a willingness to help others who are going through a frightening health trial with a child.  She has agreed to write an occasional article and answer questions for Nathan’s Prayer.  I had an opportunity to ask her a few questions.

Karen:  Sylvie, so many people have read about your journey with Sydney, your beautiful baby girl who lost her battle with a congenital heart defect last September.  Tell me a little background information about yourself.

Sylvie:  I spent six months with my daughter at Children’s Hospital in Minneapolis, constantly surrounded by medical professionals and God’s presence.  I witnessed her care and procedures, read her charts, familiarized myself with vital signs, metrics and medical terminology.  I work as an engineer.  What medical knowledge I picked up during those six months was absorbed through the experience (never through my own research).  I grasped what I could in the medical sense, and prayed for understanding of the rest.  Faith filled in the gap.

Karen:  For many people going through a health trial with a child, their faith is focused only on God allowing their child to live, not giving them courage to deal with death if that’s God’s will.  How did your faith and your walk with God evolve as you realized your time with Sydney was limited?

Sylvie: I remember always praying for God to hold her in His arms when I could not before falling asleep.  I began my prayers like this when I was in the NICU parent sleep room when she was very little, just days old.  What I meant by my prayer was that I wanted her to feel wrapped in love when I, the person that loves her most, could not physically be with her.  At first, there was a fear in my heart as I would say this prayer.  I would cry in agony and would want to take the prayer back when I realized my prayer may be answered- she would be in God’s arms, but not in mine ever again.  But, with the grace of God, I realized a mother’s resolve:  what was best for my Sydney, not best for me.  The ultimate sacrifice.  I grew to accept that the best life for Sydney could not be materialized in this world.  Coming to terms with that was the first step, letting her go was another, and was much more difficult.

Karen:  Thanks, Sylvie, for sharing your journey.

If you haven’t read previous posts about Sylvie and Sydney, here are a few:  Pray for Sydney, August Update, Strength, Nurse Angels, Kisses, Letting Go, Birthday, and A Better Place.

Sylvie welcomes your questions about parenting and loving a child with a congenital heart defect.  Send your questions either by commenting to this post or by email (see “contact” at the top of this page).

A tribute to the fine health care professionals who work to repair little hearts.  Written by Sylvie Stephens.

I first came to the PICU after Sydney’s open heart surgery. Sydney was in bed #13.  Jane was her nurse.  Ingrid was the CRN.  There was no need to adjust to the new surroundings.  I was always focused on my baby.  After three months in the NICU, seeing her with tubes all around her was my reality.  She was my beautiful baby, she was comfortable and sleeping.  I was relieved she made it through surgery ok.

A gentle doctor began to talk to me. He had the kindest, bluest eyes I have ever seen.  The kind that take you straight into the soul of a person.  We spoke about his practice and how Sydney’s care would be handled in the PICU.  This doctor had already met my Sydney, up in the NICU, to fix her central line.  After that procedure was over, my Syd-Syd opened her blue eyes wide.  This doctor bent down gently and said “Well, hello!”  The NI nurses told me this story and his name.  He’ll be taking care of my baby, I smiled to myself.  I was so moved by the kindness of this doctor, I would draw a big gigantic heart in the air whenever I spoke about him to the PI nurses.  This doctor was the “Originator of big gigantic hearts.”

Sylvie's sweet angel, Sydney

Then there was “Be still, my heart.” This doctor knew Sydney before she was born.  He took time to explain what he saw on the ultrasound and patiently drew anatomical diagrams to describe her condition. This doctor always had hope in his eyes, patted my shoulder gently when we spoke and he wanted to save her.  He wanted to save her for me.

Then there was “Be still, Sydney’s heart.” This doctor was Sydney’s favorite!  Fuss monkey?  Not around this guy.  There was always a smile, even if only in her eyes, for this man.  Rumors of Sydney’s flirtations circled around the NI.  I would see it with my own eyes in the PI and was horrified.  “Syd-Syd, he is a married man,” I would lecture my daughter.  But she would do, as always, whatever she wanted.

Then, there is “Three gigantic hearts,” a doctor so special, so brilliant, so poetic. We met in NI when Sydney was about a month old.  He took time to decipher her pathology, to evaluate her as a whole system, to try to connect the pieces that didn’t quite fit.  He appreciated Sydney was remarkable.  He saw beauty where there was complexity, hope beyond the medical realm, and gave me advice and encouragement to be the best mother I could be.

There were many gigantic hearts. I survive Sydney’s physical absence with the memory of them.  Sydney’s doctors, nurses, RTs, support staff… acts of kindness, fascinating medical skill, faith in the unexpected and grace always.   Her loss is painful, but the love I received in this setting is unforgettable.

It was intensive care for Sydney, for her heart and for me, for my heart.

Much love, Sylvie Stephens, Sydney’s Mom

I came to know Sylvie Stephens through the Nathan’s Prayer website.  Her friend, Gail Devine, was looking for information about scimitar syndrome because Sylvie’s baby girl, Sydney, was struggling with this rare heart condition.  My Nathan had surgery three years ago to correct Partial Anomalous Pulmonary Venous Return, an aspect of scimitar syndrome.  Gail emailed me about Sylvie and Sydney, and over the months we shared emails that would be the length of a novella if strung together.

I wanted to encourage Sylvie.  I wanted to be an inspiration to her.  Turns out, she was an inspiration to me.  As Sydney began to lose her battle, I watched in awe as Sylvie, determined to surround her sweet Sydney with love and happiness in her last days, put on a happy face and kissed and cooed and snuggled her sweet angel.  Sydney went to heaven in September.

The card’s message is a little fuzzy from being scanned, so here’s a clearer version:

2009 was my best year because Sydney was in it.  May you and your family be blessed with health and peace.  Love, Sylvie Stephens

Sydney the Princess

I continue to be inspired by the courage and strength of Sylvie Stephens as she remains determined to fill Sydney’s days with love and happiness.  Here is her most recent letter from Caring Bridge:

Happy Birthday Sydney!  Happy six months, baby! 

Someone printed out the lyrics to the song “Awake” this morning and left it at bedside, along with a couple of verses.  I have no idea who!  One of the “angels…”

Sydney - Mama Sylvie's "Garden" Angel

Sylvie Stephens continues to drink in every day God gives her with Sydney:

I thank God for another day that I feel alive and positive and full of joy, and I have no distractions to keep me from celebrating and enjoying Sydney.  I could be sobbing in a corner rocking back and forth, but instead I am filled with peace!  It’s a miracle.

Yesterday I bought more outfits and decorations for Sydney’s birthday party.  She will be 6 months old on Monday, September 14th, and I want her to have a party.  My heart was racing the whole time I was away from the hospital, but I did it.  She is going to have a garden party!

In the back of my mind, I am always afraid of how I will feel after she is gone.  This is what I came up with yesterday that I want to share.  I can’t fall apart after Sydney is gone.  I worry I have been so strong thus far because she is here and she needs me.  But after she is gone, I still need to live for her.  I can’t let her be the reason I fall apart.  She can’t be the reason, and will not be the reason, for anything negative.

This does not mean that I am not allowed to be devastated, depressed and heartbroken for a really long time.  But even if it is for 5 minutes a day, I need to stand up.  I need to stand up and breathe, I need to stand up and LIVE.  FOR HER.  And there will be a time when I will remember her with more joy than sorrow.  I will ALWAYS feel lucky to have had her, no matter how brief her time was with me.  “I would rather have 3 minutes of wonderful than a lifetime of nothing special.”

[Sydney has scimitar syndrome.  She is receiving palliative care at Children's Hospital in Minnesota.]

See also:  Pray for Sydney, Update, God will give me the strength…, Nurse Angels, I can’t kiss her enough, He will help me heal.