Sully's story: Family blog chronicles an infant's six-day life

For a boy who fell just short of 5 pounds, Sullivan Anderson left quite an imprint on the world.

His six-day life was chronicled in detail - from his blue knit hat to the soles of his feet - and witnessed by hundreds on the Internet.

When his parents, Brad and Heidi Anderson, set up a personal Web site last April, they thought it would display the minutia of family life - birthday greetings and photos - to a small circle of relatives and friends. They even joked on the blog about having "absolutely nothing to say."

But a journey of heartache began to unfold last September when the Norfolk couple revealed that Heidi was pregnant with the couple's third child. And that tests showed the baby had Trisomy 18, a chromosomal defect that meant he would likely die in the womb or within days of birth.

The day after receiving the news, Heidi ignored her ringing phone - family and friends calling to make sure she was OK - to sit down at her keyboard and open her heart.

"I feel my belly. When I sit down at the computer I pull my shirt up to look at it slightly stretched out," she wrote the day after she had amniocentesis - a test of fluid in her womb. "Not far from my belly button is a band aid from the amnio yesterday. I peel it off and wish that a band aid could fix what is wrong. Everything seems so... so... I don't know, surreal, cliché...

I don't really know how to describe it. A band aid on my belly for this broken child... what do you do with that but cry."

It was dizzying, frightening news to absorb, this disorder in which extra genetic material causes babies' hearts and kidneys and stomachs to form wrong.

During the next five months, the husband and wife - both 30 - would wrestle with questions no family wants to face.

Should she terminate the pregnancy, or carry the baby to term? If the baby was born, would he suffer? Would the family draw closer to him, making it harder to let go?

Should they pray for a miracle, or accept the imperfect nature of life?

How would they explain to their children, 4-year-old Ella and 2-year-old Zane, that their brother would not live long? How could they face the scores of friends, relatives, church members, neighbors who would alternately swell forward and shrink back?

"I know how I've felt on the other end, how paralyzed with the fear of saying or doing the wrong thing," Heidi wrote. "... I'm not expecting perfect words from anyone. Don't be afraid of me, of us, of this. If your heart tells you to do something for us, I promise I won't be upset. I think more than anything I just need people to act, to not wait for me to tell you what to do."

The blog let their circle of friends and family know what was going on, in a way that preserved the privacy the couple needed, but also helped them work through the mental journey.

Unlike a journal tucked under a pillow, the world could read along, from the early stages when they hoped the indicators were wrong to the finality of lab results.

"It's in his entire body - every single last cell is fatally flawed," Heidi wrote the day the last tests returned. "There is no point to meeting with cardiologists and surgeons because they can't fix every single cell."

There was also an unexpected peace as she and her husband took a walk later that day through their Suburban Acres neighborhood.

"... there was that little seed of hope but not that our little boy would be perfectly normal but that we would survive this. That maybe, we would find a name for him, and instead of looking at his life as a waste we would say that this is what his life cycle was always intended to be, that we could accept that and maybe, just maybe, actually enjoy the days we have with him(?)."

They decided they would let nature take its course through the 40 weeks of pregnancy and deliver the baby, if he lived that long.

Heidi did not always feel brave, or confident.

"The thought that keeps screaming out in my head is that I don't want to do this," she wrote in late September. "Oh, God, please don't make me do this. I think about Jesus praying before the cross. I wonder for the first time if he really didn't want to do what he did. I mean, I know it says he prayed for it to pass from him but I guess, well, I guess I never really attribute to Jesus real human feelings. Somehow it comforts me to know that he felt this horrible dread, too."

One morning, Brad left a psalm on a note card for her:

"The Lord is close to the brokenhearted, and saves those who are crushed in spirit."

The couple's children often pulled them through the days, tugging them along with small hands.

Tasks Heidi once felt were mundane - throwing open a curtain, fixing breakfast - seemed like mind-cleansing gifts.

There was the silly "Polly Wolly Doodle" song sung by Zane, the calm of bedtime stories, the birthday parties that needed planning and celebrating and laughter in spite of everything.

Brad wrote about Zane and Ella's birthday party in late September:

"The day was perfect - beautiful weather, 75 degrees, a fall breeze blowing in off the field next door, and tons of happy children darting to and fro with candy in their mouths and laughter on their lips - but behind it all was the underlying sadness that our son will never be able to be a part of a day like that. I struggled with the idea of having the party amid so much uncertainty in life, but 'normal' moments like that are definitely times that we need right now."

There was also a baby to plan for: Heidi crocheted a blanket, as she had for her two older children, this one in winter white, with blue ribbon. They posted his ultrasound picture on the blog. And they selected a name:

"Sully, I'm calling him Sully," she wrote. "It doesn't mean anything super spiritual - keen eyes - after I had called him that a couple of days a friend of mine wrote when she saw his picture that he had a beautiful face and eyes that looked like they were listening. And then it just seemed right - like his name. Sullivan Gage Anderson.

"Gage means to measure and he does feel like he is measuring everything we are or thought we were. I feel like I am being weighed and measured and examined - not just me but everything in my life - every thought and action - every reason for why I do the things I do and have done. But Sully is softer, more tender. Oh I am struggling so much. It helps me to call him by name, to let him be a real baby. My heart is trying to move on and distance myself. I feel myself pulling away from him, not wanting to love him. But I want to love him - I really do want to love him. Why am I struggling so much? This is so hard.... "

Ella drew pictures of the baby, and gave them to her mother: "Mom, I draw all those pictures for you to make you feel better. It's OK that Sully will die. He'll be OK."

At a time when most mothers are planning a nursery, Heidi lit upon the idea of building a playground in Sully's honor.

There was a bare spot at the family's church - Trinity Presbyterian Church on Colonial Avenue - that would be perfect for the congregation's many children.

She approached church members and her pastor, who were receptive to the idea. Landscape architect Ann Stokes, who attends the same church, donated her services. Friends set up a Web site - www.sullysplayground.com - to raise money.

Heidi met with playground equipment companies, church members and designers while Sully stirred within her.

In December entries, Heidi wrote about her Christmas prayers.

"I find myself asking him to fix every single cell in Sully's body. Don't worry, I know that if that isn't what God chooses to do that there is already a miracle to Sully and what, according to what modern medicine tells us so far, will be his short, yet still purposeful life.

"And so, I have a second thing on my Christmas list. I want a 'miracle' playground. Yes, a playground. I want Sully to be remembered in a place full of joy and laughter and childish fun. I want to take my children there and see my friends' children climbing all over a beautiful playground and think of Sully that way instead of at a cemetery.

"That's all I'm asking for this Christmas," she wrote. "Just miracles... "

There was a time when Heidi felt like a full-term pregnancy would be a cruel hardship, and even questioned why God would make it so. But as she approached Sully's February due date, she felt that every minute held purpose.

An ultrasound at 37 weeks gave the couple a last glimpse of their son in the womb: "His heart is so big. It's almost fifty percent of his chest - maybe just because his chest is so small or maybe it is the imperfection of the heart. Nevertheless, even though it is so physically wrong, somehow, it is poetic to me. My Sully has a big heart. It seems so perfect, now, that he will come to us in February and that he will always be my Valentine."

On Feb. 4, Sully arrived at 11:08 p.m. at Bon Secours DePaul Medical Center in Norfolk, weighing 4 pounds and 15 ounces.

The couple took him home the next day.

"... I feel like there are pages and pages in my heart," Heidi wrote. "Those thoughts will come with time but for tonight, this sweet night finds me writing that I have a baby in my house! My Sully is here with me and there is such joy. All of the fears, all of the anxiety over bringing him home, all of it is gone. As soon as he was in my arms all I wanted was for him to stay as long as he could. It is true that perfect love casts out fear. That is what I was given in that first moment I held him, a taste of perfect love."

The family sang "Happy Birthday" to him every night. Heidi and Brad used a tiny syringe to feed him breast milk. And they all piled into bed together to watch "Lady and the Tramp."

The family's pediatrician and a nurse from the children's hospice Edmarc visited Sully over the next few days. A photographer came from Now I Lay Me Down to Sleep, an international group of volunteers who photograph terminally ill infants with their families. She captured images of Sully from head to toe, and in the arms of his parents, siblings, grandparents, aunt and uncle.

On Feb. 10, a Sunday, his family took him to church to meet members of the congregation and show him the spot where a playground with his name would be built.

That night, he drew his last breath. The next passages Heidi wrote privately in a journal, which she later transferred to the blog:

"I held him for hours after he was gone. I bathed his precious body. I dressed him in his most comfortable clothes and fuzzy socks and his signature blue hat. And I wrapped him to keep him warm although his body could not stay warm...

"But how can I ever fully explain the ache, the sheer pain of my breaking heart as I handed my boy to my husband, as I looked on him for the last time and kissed his face and told him I would see him again in a better place, and then watched him be carried away from me for the forever of this life."

In the days after Sully's death, there was a memorial on his due date, Valentine's Day. Church members gave the Andersons a "memorandum of understanding" to move forward on the playground, with a fundraiser scheduled for April 12.

Heidi and Brad struggled to return to normal, or at least what normal would be from there on. Just a trip to Target seemed too much for Heidi to bear.

"I make my bed and carefully tuck Sully's little outfit and hat back under the pillows," Heidi wrote. "I smell it constantly. This morning, I kept trying to get his scent but it is growing fainter with the passing of days. I sleep with the blanket I made him, feeling like a child in need of comfort. It's been just one week since his service, 11 days since he left, 17 since he was born. How long will I count?"

By March, hundreds of people across the country had read the blog, viewed the photos and videos posted there, passing the link from friend to family to church member to neighbor in a chain that lived long past Sully's six days.

Though Heidi found it hard to face the world outside what she called "Sully's cocoon," the prospect of the playground drew her forth to meet with church members and designers. Two-thirds of the $65,000 needed for the playground has now been raised, enough that the equipment has been ordered, and a ribbon-cutting planned for April 20.

Heidi's not sure how long she will continue to write so intimately in such a public spot, but she will at least until the day when Sully's Playground is reality.

"I think of my boy's playground and I smile," she writes in one of the latest blog passages. "I want for you to walk with me through the completion of that wonderful place and perhaps, I hope, that will mean walking with me through a beginning of healing."

There have been moments of mending. Not long ago, for instance, she wrote that she woke to a feeling she had never experienced.

"I had this wonderful sense of a well, happy little boy. It wasn't baby Sully but a little boy Sully, and he gave me such a sense of comfort. I don't really know what to call that, but I hope I wake to it again and again."

Elizabeth Simpson, (757) 446-2635 elizabeth.simpson@pilotonline.com