Thursday, October 02, 2008
Every time I come to this blog, I feel guilty that I never post here anymore. Like I've abandoned Nova. Yes, I'm still irrational, just part of the deal I guess.
So I've been really involved in the 29Day Giving challenge
(as you can tell from my last post I guess) and it's keeping me busy, Crazy busy sometimes, like this past weekend, with the book deal coming through and all. I am totally living vicariously through Cami and all she's doing you know? Unfortunately, sometimes being too busy and stressed out leaves me raw.
I followed a link from a post another Giver made, to a site called Wish Upon a Hero
so I decided to check them out. But I got there and saw the graphic in the center of the page (go ahead, click it, I'll wait ;) ) and got all caught up in reading Emmie's story. How could I resist? Emmie has CHD, her heart is similar to Nova's and has EXACTLY the same heart defects as Alexis did. Exactly. To the last detail.
Reading her story, looking at her pictures, I felt like I was looking into the crystal ball of what might have been had Alexis survived the initial surgery. Certainly not the romanticized Pollyanna picture I always imagine.
Of course, that story created a downward spiral and I found myself sifting through this site, and all the news stories that came out after we lost Nova. I remembered that Elizabeth Leland had emailed me the text from Nova's Newspaper Article. Funny, back then (right after I lost him) it seemed perfect. Looking back on it now, I realize how many errors there are in the information.
Anyway, I was never able to find a good way to share the story back then, and I'd forgotten that I had this in my email (It's been there almost exactly a year now!) so I decided I'd post it here now.A HEART THAT MUST GO ON4 YEARS AFTER LOSING A BABY GIRL, ERIN MONAHAN LEARNED THAT THE SON SHE WAS CARRYING WAS VERY SICK. HOW COULD SHE FACE THAT GRIEF AGAIN?
Sunday, October 8, 2006
Erin Monahan's daughter lived 12 days. It didn't seem right or fair, or even possible. Only twelve days.
Erin named her Alexis, and the undertakers dressed her in pink, an outfit Erin bought for her to wear home from the hospital. They placed her in a tiny white coffin, 36 inches long, and a friend wouldn't let Erin look when they lowered it into the ground.
I can't go on, Erin thought.
She withdrew into a dark, angry place inside herself. No one but Alexis was allowed in. Days evaporated into weeks, into months, and Erin rarely talked to Scott, her partner, and never about Alexis. She put in 14-hour shifts as a waitress, away from their home, away from her four other children, away from any more heartbreak. She thought about suicide.
And then one day, Erin caught herself smiling.
She doesn't remember what made her smile, but she felt guilty that she could smile. Alexis was dead and she smiled. It felt like a betrayal.
Getting pregnant a few months later is what finally brought Erin back from the edge.
She would have another child, another chance.
Surely it wouldn't happen twice. She couldn't lose another baby. Wouldn't that be too much for one mother to bear?
Erin hadn't planned on getting pregnant again. She already had four children, and they couldn't afford another. It seemed as if they were always broke. Scott worked as a landscaper, and in the slow winter months he often didn't make much money at all. They depended on Erin's tips from the restaurant, on food stamps and Medicaid. Erin didn't like being on welfare, but she wasn't ashamed. Whatever it took, she would do for her children.
She is 34, petite, with long, delicate fingers like a pianist's. She smokes half of a pack of Marlboros a day (never, she says, while pregnant) and has a throaty laugh and a throw-back-your-head smile.
Erin doesn't like anyone to see her cry. Even her friends didn't always know how sad she felt after Alexis died in August 2001. A neighbor's preacher tried to console her and offered his prayers, and she cussed him out and chased him from her yard.
Writing became her refuge, where she went to sort through her feelings.
Words and language fascinate her. She dropped out of high school her senior year when she became pregnant with her first child and never went to college, but she never quit reading and studying. She credits Carl Sandburg's "Fog" for her love of poetry. Six short lines, she says, that inspired her to write.
The fog comes / on little cat feet. / It sits looking / over harbor and city / on silent haunches / and then moves on.
She liked "Fog" so much she fell asleep reading it every night for years.
If you read Erin's poetry, you might get glimpses of her personality: Self-assured, sarcastic and willing to laugh at herself, wise at times, brash and smart-alecky at others.
A healthy girl
Her daughter Terra was born July 8, 2003, nearly two years after Alexis died. She had dark hair and blue eyes like Alexis, and a few times those first few weeks, Erin called her Alexis. She had to remind herself that Alexis was gone.
Erin would tiptoe over to the crib when Terra napped, hold her breath and listen for breathing and watch to see if Terra's chest rose. She pulled the crib next to her bed so when she woke at night, which she often did, afraid Terra had died, she could reach over and feel for a heartbeat.
There was nothing wrong with Terra.
An echocardiogram found no evidence of a congenital heart defect, which is why Alexis died. There was nothing to worry about. Terra's heart was healthy. But Erin couldn't stop worrying. She held Terra more than she ever held a child. She went back to work as a waitress three weeks after Terra was born, but quit seven months later. As much as they needed the money, as much as she enjoyed working, Erin couldn't bear to be away.
She still grieved for Alexis, but Terra forced her out of her depression and over the next two years their lives returned to almost normal.
Then Erin got pregnant again.
`I'm seeing something'
A doctor scanned Erin's belly with an ultrasound probe, and a grainy picture appeared on the monitor screen.
Head. Hands. Feet. Heart. A boy.
The doctor focused on the heart. Having one child with a congenital heart defect put Erin at greater risk of having another. But Terra was fine, and Erin convinced herself this baby would be, too.
A few moments passed, then the doctor said: I'm seeing something. The baby's blood wasn't flowing the way it should.
Another heart defect.
Erin felt numb.
Wasn't once enough?
That night, she turned to writing for consolation. She created a blog on the Internet, a personal journal where she can say anything she wants and hear back from people who read it.
"I just don't know if I can do this again " she wrote. "I'm terrified and confused and I dread the emotional state I'm going to be in during labor and delivery, knowing that as long as he's in me, he's ok, but once he's born the defects make the decisions and the danger really sets in .
"After Alexis, the anger literally saved my life. I hope I find the anger soon, before I lose my mind."
No choice but to endure
Someone in the health department told Erin that God gives special children to special mothers, and God must know Erin is strong to give her two children with congenital heart defects.
Erin didn't feel strong. If she could hold her breath and stomp her feet and refuse to go on the way Terra sometimes did, she would.
"Let's be honest " she wrote. "My son might die."
"That has no bearing on whether I'm special or not, it doesn't make me strong, it makes me what? unlucky? cursed maybe? but not strong. And I refuse to believe that, if there even IS a god, that he goes flipping through the big book of people looking at the `S' section (s, for strong and special) deciding who he's going to drop the bomb on.
"The truth is, I'm doing whatever I'm doing because there isn't much other choice, because I don't know any other way to do it."
The day Nova was born
Nova was born at 12:18 p.m. on Dec. 2, 2005, at Union Memorial Hospital. He was 20 inches long, 6 pounds 13 ounces, with blue eyes, plump pink cheeks and black hair like peach fuzz.
To look at him, you would never have known anything was wrong.
An ambulance rushed Nova from Monroe to the neonatal intensive care unit at Carolinas Medical Center in Charlotte.
Hope, Erin realized, can be a scary thing.
"It's like an instant replay," she wrote, "and I feel the fear welling up, and we wait, not knowing. And I don't even know if I really want to know. I've always believed that one shouldn't ask a question unless one is ready to hear all the possible answers, and I'm not."
Surgery might save him, but surgery might kill him.
In her mind, she bartered with her son: If you come home, I promise I will never make you pick up your underwear or make your bed.
Home for a while
They brought Nova home when he was 13 days old, in time for Christmas with his sister and brothers. The doctors decided to delay surgery for three months so he could grow bigger and stronger and have a better chance of surviving.
Erin settled into a newborn baby routine, nursing, changing diapers, showing Nova off to family and friends.
It seemed so normal.
"Having him home makes it easy to pretend that there's nothing wrong with him," she wrote. "Then someone or something will remind me and it all comes crashing down again. It was hard, devastating, to lose Alexis. I loved her - but she never came home. I never `knew' her. (Nova) is a part of our family. Bringing him home makes him `mine' in a way that Alexis never was."
Erin thought it would be easier to face the surgery with three months to prepare.
It turned out to be harder.
With Alexis, they never had time to think about what might go wrong. Her surgery lasted about 10 hours, and five hours later she was dead.
With Nova, they knew the worst. He had the same heart defect as Alexis, called pulmonary atresia. Instead of one artery connecting the right pumping chamber to his lungs, there were many tiny arteries. There also was a hole between the two chambers.
Scientists don't know what causes congenital heart defects, but they suspect genetics. When the heart is forming, something goes wrong.
At birth, a baby's heart is only about the size of a walnut, and surgery to repair it is painstaking and intricate. Nova's surgery lasted over half a day, more than 12 hours.
When they took him off the heart-lung machine, his heart started back up on its own.
Erin and Scott were allowed to see him for 15 minutes out of every two hours, and they saw him around 6 p.m., then around 8.
At 10, the nurse wouldn't let them in.
Nova's heart had stopped.
Erin felt as if hers would, too.
The doctors were able to revive him, but for Erin, it was the first of many scares over the next six weeks. One day Nova looked better; the next day he seemed close to dying. If Erin hadn't known it was Nova, she might not have recognized her son. His face and body were bloated. A jumble of tubes, blue and green and red, ran in and out and around him, through his nose and inside his mouth and into his veins and out of his stomach.
Erin came to hate the words she heard in the hospital to describe her son: devastating, catastrophic, death. Those weren't words to describe a baby.
Everything that could go wrong seemed to go wrong. He had trouble being weaned from the breathing machine. Then kidney problems, infections, a heart catheterization to expand arteries in his lung, a tear in his colon and surgery to repair it, then a yeast infection in his blood.
How much could he take?
How much could Erin?
One day she wrote: "I can't wait till he comes home ."
Three weeks later: "I can't even put into words how angry and confused and frustrated I am ."
Another day: "I love the nurses."
The same day: "I'm sick of them all."
"He looks great."
"He looked like hell."
Other babies around him died, but Nova held on for a week, then two, then three. Finally in the sixth week after surgery, when he was four months old, Nova seemed better.
"It sort of scares me to believe that he's really doing ok now, part of me is still holding its breath waiting for the next complication to come up. God help me, please let there be no more complications."
Erin wrote that entry in her blog on a Wednesday.
The next afternoon, April 6, the infection in his blood turned septic and Nova's body went into shock.
Only one organ kept working, his mended heart.
For the second time in five years, a child of Erin's was dying. It didn't seem fair, or even possible. Erin held Nova and told him she loved him. A nurse removed the ventilator and Erin rocked him in her arms until his heart stopped.
It was the first time in six weeks she held her son.
United in their grief
Five years earlier when Alexis died, Erin shut herself off. Her friends had never heard of congenital heart defects, and Erin didn't know any other mothers who had lost children because of them.
She felt alone, and isolated.
She and Scott lived in the same house, but that was about all. Scott doesn't talk much even in the best circumstances, and he didn't seem to understand her grief. She had bonded with Alexis while pregnant, but Scott hardly knew his daughter.
They fell apart.
Nova brought them back together.
They both took Nova home. They knew him, both of them. Both of them changed his diapers and held him and loved him and worried about him.
Now, six months after he died, they are both grieving for him. And, they have finally begun to talk about Alexis.
This time, Erin doesn't want to be alone. She writes on her blog nearly every day, reaching out to other mothers of children with congenital heart defects, raising money for the American Heart Association ($3,673 so far), searching for a reason beyond her children's deaths.
Writing is her way of keeping Nova and Alexis alive.
People who read the blog called her inspirational, amazing, resilient. Erin doesn't feel that way. "You don't know that I've only cooked dinner for my family once or twice in the last month," she wrote in May, "or that most days I can't remember which kid has what after-school activity or field trip. I haven't told you that I've slept on the couch most nights since he went into the hospital, and every night since he died. I haven't told you that I've become clingy and dependent, and find myself afraid, every day, that I'm incapable of doing any given task. I question myself at all times, I hate for my husband to be anywhere other than at my side.
"You probably don't understand that the reason I continue to post here is that I can't bear to let go."
Her grief, she has come to understand, will never end. It's a part of her life, a part of who she is now, a mother who lost two babies. And so she is learning to live with the grief. She is learning to live without Alexis and Nova.
PERSONAL: Scott LeClair, her partner, and seven children, Tommy, 17, Kory, 15, Kassi, 12, Brendon, 9, Terra, 3, Alexis, who died Aug. 29, 2001, and Nova, who died April 6.
HEART DEFECTS: Congenital heart defects, Erin learned, are the most common of all birth defects in the U.S. As many as 4,000 children will die this year because of them. Scientists still don't know what causes congenital heart defects, or how to prevent them. Details: www.congenitalheartdefects.com or www.tchin.org
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posted by Erin @ 1:54 AM