Today marks 5 years since his passing. I don't know what to do with that ... Does it make any difference? I don't know. He's no closer, and no farther away. He's still just gone, still right where he was, and always will be. There's a stillness in my heart, the quiet place of void. No light, no singing, no laughter. Just the stillness of absence. At least it's quiet there now. That's a bit of a relief compared to the screaming, jangling, wailing chaos that filled that space a few years ago. I will never stop missing him, I will never stop loving him, and I will never stop hurting, and I will never stop remembering him. But the (kind of sad) truth is that, though I'll never "get over it" I'm pretty busy "getting on with it."
I can't believe it's been nearly 2 years since I posted here. Crazy how life gets away from you that way. I know they say that, "life goes on" but wow.
So Nova would be nearly 5 now, if he'd have survived. Five. That's pretty much incomprehensible to me. If I have to be absolutely honest with you, I have to look at pictures to remember what his fat little baby face looked like. I can no longer imagine, in my mind's eye, what I think he'd have looked like as a nearly 5year old little boy. I can't imagine all the things he'd have loved, or hated, or wanted, or said, or done, like I once did.
I wonder what he'd have been for Halloween? Or if he'd have even been healthy enough to go trick or treating. Or if some unforseeable thing might have happened in that time between his (albeit imaginary) survival of the surgery, and now... If he'd have lived, would he still be alive? Realistically, I have no way of knowing that. And I've learned that the "what if" game is an incredible waste of time and energy anyway.
It's still, even after all these years, even after losing 2 children, a little surreal that I *should* have a 4 yr old son and a 9 yr old daughter in addition to the crazy chaotic rat-pack that currently fills my house to the brim.
So, anyway. On to the thoughts and events that bring me here to post after so long...
After watching an episode of Hoarders a couple of days ago, in which a woman hoarded in response to her daughter's death, I was inspired to finally sort through all of Nova's things. Believe it or not, when he died, pretty much everything he'd ever owned was packed into boxes and put into the closet, where it has sat, collecting dust and age, since April of 2006. I've seriously never even looked at any of it. I can't even explain why. At first, it was a comfort just knowing his things were there. But I realized the other night that they served absolutely no purpose. There was simply no rational reason to hold on to every unused diaper, every stained bib, and every used onesie and sleeper he'd ever owned. And so I pulled it all out, passed a few things on to my new granddaughter, and threw away most everything that didn't have a significant meaning or memory attached to it.
It was painfully painless, if that makes any sense. I felt a great sense of relief to let go, just a little, of what's been gone for so long - and a great sense of guilt that it didn't hurt more. It was a little too dry-eyed. I expected to be sad, to relive memories that would break my heart all over again. And don't let me mislead you, I did relive things, I did get sad - and I also smiled at what amounts to just a handful of memories that I have with the most amazing little man who ever came into my life.
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 ON 4 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
Dateline: MONROE
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.
Erin Monahan
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.
BLOG: http://novasheart.blogspot.com/
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
CALL FOR PERSONAL ESSAY SUBMISSIONS FOR BOOK Topic: THE HEALING POWER OF GIVING posted: September 26, 2008 Submission Deadline: November 29, 2008
Book Title 29 GIFTS: How to cultivate a daily giving practice that will ignite your energy for life by Cami Walker and the 29Gifts.org Community
Book Description 29 Gifts is the story of how 29Gifts.org founder, Cami Walker, healed from a major illness by taking an unusual prescription from a South African medicine woman. The remedy? Give 29 gifts to others in 29 days. Midway through Cami's 29 days of giving, after seeing many miraculous changes in her life, she launched a website encouraging others to take the 29 Gifts Challenge and share their stories about how it impacted their lives. Six months and 1,765 committed givers later, Cami was contacted by a major publisher and decided to say YES to their request and write a book. The book is scheduled for release Fall 2009.
In addition to Cami's inspiring personal story, 29 Gifts will also include a collection of 29 personal essays from others about the Healing Power of Giving.
SUBMISSION DETAILS Authors whose stories are chosen for publication in the 29 Gifts book will receive a one-time payment of $200.
Selected contributors also get a brief bio at the end of their story and a link to their 29Gifts.org profile page. On your 29Gifts.org profile page, readers can learn more about you, leave comments for you about your story, and link to your website.
How to Submit: 1. SIGN UP for the 29 Gifts Challenge at http://www.29Gifts.org
2. Give away 29 gifts in 29 days. Your gifts can be ANYTHING given to ANYONE -- smiles, kind thoughts, old sweaters, cans of soup, spare change...
3. Write and submit a story that is 2,500 words or less about how it impacted your life to focus on giving for 29 days
4. Email your story in the BODY of an email to story@29Gifts.org (NO ATTACHMENTS, please) *Put STORY in the SUBJECT LINE of your email *Include your FULL CONTACT DETAILS: first and last name (as you want it published in your byline), phone number, mailing address, email address and the link to your 29Gifts.org profile at the TOP of your email and the story below that.
Submission deadline: November 29, 2008
NOTE: You MUST be a member of the 29Gifts.org site (i.e. have a profile on the site) to be considered for the book.
If you haven't signed up at http://www.29Gifts.org yet, DO IT NOW and start your giving because story submissions for the book are due 11/29/08!
A FEW GUIDELINES TO GIVE YOU THE BEST CHANCE OF BEING SELECTED FOR THE 29 GIFTS BOOK: 1. Write in present, active tense.
2. Use a lot of sensory detail that helps stimulate all five senses.
3. Use conversational tone, as if you are sitting down and telling the story in person to your best friend.
4. Tell the story of the gift(s) you gave, but also communicate how it impacted you. How did you feel about yourself after offering the gift(s)? Did the gift(s) change your perception about something? Did you receive something unexpected in return? Was there an evident impact on the recipient of the gift(s)?
Please direct any submission-related questions to: story@29Gifts.org *Absolutely NO phone calls please.
---------------------------------
Please pass this along to anyone who might be interested!
Yeah most of you don't know the story... back in the day I only blogged on my blogger blog. I had an extended group of friends though blogger. One of them was Gretchen. She was a friend of a friend, at first... She had a big family, and her baby girl was born just about 6 weeks after Nova. I found her blog and a picture of Lydia by accident, and it was true love at first sight. Lydia was such a gorgeous baby girl, the perfect future wife for Nova. I left a reply, jokingly saying that if I weren't so opposed to arranged marriages, I'd start making plans for their wedding. And a friendship was born. And because of the nature of our first meeting, she kept up with Nova's progress, and was heartbroken when he died. And since his death she's been Team Nova's greatest supporter. But I've strayed totally off-topic. I still ocassionally make my rounds through my blogger list, peek in on the friends I had there, despite the fact that I've really drifted away from the whole bunch. And tonight I made my rounds, reading blog after blog. And I hit Gretchen's blog. And her last post was about lydia. About Lydia's birthday actually. I was shocked to see that Lydia is 2 now. Two. As gorgeous as ever, with the sweetest little smile and blond curly hair and a nose that crinkles up when she smiles that smile that only a 2 year old can smile. So Lydia is 2. That shouldn't be such a surprise. I knew in my head that she was 2. I mean, I knew Nova would have turned 2 in December, so obviously, Lydia would turn 2 in January. Right? So why am I so shocked and sad? I guess seeing pictures of her at 2 brought it back that Nova SHOULD BE 2. Nova SHOULD BE smiling and crinkling his little nose up. Nova SHOULD have a head full of hair and an adorable little personality that shows up in pictures... It sort of reminded me. I'm not sad that Lydia is 2. I'm sad that Nova never will be.
I was recently approached by someone I know... she runs a local organization and is looking for charities to work with for their next fiscal year... she asked me if Team Nova would be interested and wanted some more information about what Team Nova is and what we do.
Team Nova has taken on a bit of a life of it's own, which is pretty encouraging. Truthfully, we're no different or better than any other group that signs up with the American Heart Association's Heart Walk. But it's so important to us that I guess I tend to talk it up as if it's more than just another team. He was my son after all, I guess it's easy for me to feel as though it's bigger and more important, ya know?
Then today, I received a comment on Nova's Heart, and a Friend Request here on Myspace from a mother who lost her son last month. Landyn lived 2 months, and passed away the day after Nova's birthday. His mother Megan has just begun the journey - Just 6 weeks in... I'm sending her my thoughts and warmest wishes.
Anyway, because of these things, I was reminded that the old page was down because the 2007 fundraising event was over. But they usually start it back up for the new year in January, so today I went to see if they were accepting team sign ups yet. They are, and I signed up - set the team goal at $10,000, and despite the craziness in my life at the moment, I'm setting off to solicit donations and support again.
$10,000 is a pretty lofty goal, but I honestly think we can do it, because I'm dedicated to it. Because it's important to us and more important still to parents who will continue to face the devastation of Congenital Heart Defects until we raise the funds and awareness to do the research needed to understand and prevent them.
What a wonderful surprise it was to receive the email! Thank you so much Kat for feeling we deserved it, and thanks too, to whoever nominated us!! I'm planning to do a bit of an overhaul on the blog this evening, and The award will most certainly become part of the 'renovative process!'
It's strangley fitting that today is the day we got this award too. I'm sure most of you know that today is Pregnancy and Infant Loss Awareness Day, and I've been using a PAIL layout on my (more frequently used) MySpace Profile. I hope that it's a peaceful day for all of us who've lost a child, regardless of when, or how we lost them.
Now let's see, an update. It's been nearly a month since the Heart Walk was held here in Charlotte. Team Nova didn't do quite as well this year as last, monetarily speaking, but honestly, I believe we were more successful in the awareness department. There were no newspaper stories, and no onstage speech, but there were more people that got involved, joined the team, and were personally changed and made aware of the issues surrounding CHD. And sometimes, at least for a while, I think that's even more important than the money. All the money in the world won't create CHD research projects. Only awareness can prompt that change!
So our totals were: Team Total Raised $2,875.00, with a total of 13 members. Unfortunately, the Kintera website was (and apparently still is) experiencing some technical difficulties and we know that this total is short by at least $258. The AHA assures me that they're investigating the problem and that they'll find and apply the "lost" donations.
On the home front, things have been pretty stressful lately. I've started babysitting full time during the day, and working part time at night. I'm having some issues with my 16 year old son and his father/grandfather (who chose not to bother with him or his brother for the last 15 years...)which may prove to be the stressor that sends me right over the edge.
I found out that my father (whom I haven't seen since I was 8) died 2 years ago, and his oldest daughter has suddenly contacted us out of the blue. Not a bad thing, that sister concept, just an adjustment, and a situation that brings up some feelings that I thought I'd laid to rest years ago.
And despite all of the above, I've come to a point in my life where I'm feeling peaceful. That's a strange one because I haven't felt truly at peace since before Alexis died 6 years ago. Contentment is not a feeling to which I am accustomed. lol. But from this sense of contentment, it seems, comes poetry - I have not been able to write poetry since Nova died. I was afraid it went with him. But recently I've been writing quite a bit, and even won a poetry contest that came with a $50 prize!
Name: Donovan "Nova" LeClair
Location: Monroe, North Carolina Bio: Nova was our second child to be born with congenital heart defects.
We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05,
with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006.
This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
View Erin Monahan's Complete Profile
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