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!”

Alisha wrote:
“Regarding the tutu project, I went through a very special organization called Tutus and Tuques (www.tutusandtuques.com). I thought that this organization’s mission along with the tutus was a beautiful symbol of Sydney. I also wanted to honor a little girl whose mom is a part of our mother’s club. She was diagnosed with leukemia when she was little and just went into remission in September. I shared Sydney’s and Hannah’s story with some friends, neighbors, and members of the North Aurora Mother’s Club to see how many volunteers that I could get to help. The cool thing about it, too, was that there were several children who helped with the project as well. Wherever you choose to donate the gifts, I am sure that they will put a smile on the faces of those little kids, and that is one way Sydney has touched our lives… just the thought of her makes me smile like the sun couldn’t beam any brighter!”

I donated the beautiful tutus and tuques to Child’s Voice, an outpatient medical evaluation center for children who may be victims of physical and/or sexual abuse and neglect. There is no better tribute to the life of a child than to pass kindness on to others… especially other children. A heartfelt thank you to Alisha, the moms in North Aurora and Tutus and Tuques!

Sylvie

While enjoying a perfect fall day downtown, we went inside a Macy’s Holiday Store filled top to bottom with Christmas decorations. Almost trance-like, forgetting it’s not yet Halloween, I went in search of a pink Sydney Ornament. I lost my baby girl at 6 months and 1 day to Scimitar Syndrome and other complications. This fall I decided each year I will select a pink Christmas ornament in memory of Sydney to place on our tree. This year I selected a pair of pink toe shoes, as one of my dreams for Sydney included ballet classes.

But maybe if Sydney would have lived, I would have bought a pink heart ornament instead. A heart ornament for each year of life following her open heart surgery. We would have filled our Christmas tree with many, many hearts throughout the years.

I thought I would pass along this idea for those that have lost children, a way to have their presence at Christmas. This is also a great idea to celebrate the children that have survived, to celebrate their resilience and bravery.

Aren’t the best ornaments the ones with special meaning? I have a collection of “stolen” ornaments from my mother’s tree, ornaments made by her hands, and those are my favorite. Each year she makes a fresh batch of ornaments, and then pretends not to look as I sneak one off her tree then later hang on mine. I have collected dozens! One day my children, Sydney’s legacies, will have some “Sydney Ornaments” from our tree on their tree. They will know their big sister.

1. ARRIVAL. Most parents arriving to the NICU are overwhelmed, emotional, and scared. I remember receiving countless binders and folders with information, instructions on how to label and store my expressed breast milk, information about parent sleep rooms. Nurses and other staff introduced themselves. All I wanted to do was to hold my baby and to talk to the doctors about her. Ask dad (if he’s up to it) or a family friend to sort through the information for you and later give you an abbreviated summary.

2. REST… when you can, as often as you can. New mothers are exhausted after childbirth, exhausted by the feeding schedule of the baby. Add the stress of having a child in the NICU and the effect is compounded exponentially. I felt most comfortable napping in a recliner chair next to Sydney’s incubator. Knowing my baby was near gave me comfort, and I was so exhausted I didn’t mind the background noise of monitors, alarms and hospital staff. It’s the only place where I could fall asleep. Later, as I got accustomed to the unit, I felt ok going to the parent sleep room for a proper nap on a bed. Find the place where you CAN fall asleep and rest as much as you can.

3. RESOURCES. Use the resources available:
a. The Chaplin, for spiritual support and prayer.
b. The Social Worker, for emotional and mental support, meal programs, parking discounts.
c. The Care Coordinator, for help with insurance benefits, home care logistics. Sydney was only insured on her father’s insurance and it had a 2 million lifetime maximum. Thanks to advice from the care coordinator, I signed up to insure Sydney through my employer as well, and thus increased her lifetime maximum by an additional 5 million dollars. Sydney maximized her father’s insurance maximum after three months in the NICU.
d. Use Caring Bridge to inform family members about the status of the baby, or designate a family spokesperson to relay information. I received many well-meant calls for information about Sydney that I didn’t have the time to return.
e. Allow visitors OR politely ask for space. Everyone handles stress differently. I wanted to be alone with Sydney and keep my focus and energy just on her. But for others, having family and friends around is soothing and helpful. Find out what feels BEST for you and do that.

4. NURSES. Learn their names. In my time of incredible stress, my ability to remember names didn’t falter. But a good idea is to keep a notebook of names. Sydney had a new nurse every 8 hours during the first month of her time in the NICU. After that, I noticed more consistency. I later learned that nurses in my baby’s unit could sign up to be primary caregivers of a particular patient, meaning that each time they reported to work, they took care of the same baby. I learned this and was on a mission to get primary care givers for Sydney. If Sydney had a nurse I liked, I asked him or her to “sign up” for Sydney. Some nurses don’t take primary patients. And every hospital unit policy is different. But having a team of consistent caretakers was invaluable to me- these nurses were familiar with Sydney, what was normal for her, and what was atypical.

5. DOCTORS. My preconceived notion of what physicians are like (from experience in “adult medicine”) was altered. What I found was compassionate, faith-based men and women that combined medical knowledge, communication skills and empathy to take care of my infant and help me make the best decisions for her. I found it was most helpful to compartmentalize my emotions when speaking to the doctors. I found they would share more information the calmer I appeared. I kept a notebook with notes and questions.

6. THE BABY! The most important person, of course, was my infant baby girl. The lactation consultants helped me with feeding, but also emphasized the importance of skin to skin contact (kangaroo care), interaction (singing, talking) and holding her as much as possible. Although I was first intimidated by her feeding tubes, IVs and oxygen lines (and later her trach), I quickly learned how to pick her up and hold her and keep all her lines intact. And this gave me the greatest joy, the greatest relief and centered my purpose: to be her mother.

If you have any specific questions related to this article, please feel free to email Nathan’s Prayer directly at karen@nathansprayer.com or post the question as a comment. I will keep anonymity when requested.

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.

Sylvie,
What are some of the ways we can be supportive when a friend’s child has a serious medical condition?

I have a friend whose three children are all terminal from a genetic disease she and her husband did not know they carry. The children do not know and hold hope of feeling better one day.

Thank you,
Barbara

Dear Barbara,
Thank you for your question, and for your gentle concern for this family. From personal experience, I think a wonderful way to support this family is to help create memories with the children and record them. I don’t know how old the children are, or how sick they are. But I’m thinking finger painting, make your own pizza night, baking cupcakes, blowing bubbles, visits to the park, balloons, “half-birthday” parties. Ask the parents, what would make these kids smile? Do it, then take pictures of the family doing these things together! Take video. Capture the sweet moments between mom, dad and these children.

In the last months of Sydney’s life, her nurses would take my camera and take tons of pictures of her and I together. I don’t know that I would have thought to do it. By the grace of God, I lived each day in a delicate balance. I didn’t dwell on the fact that my time was limited, but I did not take the days for granted, either. I pray for the parents of these children that they are able to live the same way.

So offer to help plan an event and be the “family photographer” for it. Then capture the smiles.

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.”

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).