The Disappearing Parent

I can be very judgmental.  Ask my husband.  He'll agree.  The thing I think I'm most judgey about is parenting.  No, I do not think I know everything or that I am superior.  There are simply some things I've come across over the past five years that can't seem to escape that black-robed mouth in my head and her finger wagging.

When we have a child, we take on a huge responsibility.  It isn't just about feeding, clothing, and safety.  We take on the responsibility to love and nurture that has no expiration date.  We bring this child into our family by choice.  A pregnancy isn't planned?  Tough.  You have the baby, you've made a choice.   If you aren't sure you can handle the responsibility, there's adoption.

I no longer have the option to hold and care for my daughter.  For a good while after she died, my arms physically (perhaps that came from mental roots) ached for her.  No, in her short eight years she did not commit crimes or injustices in this world.  She never disappointed me either.  Yes, I was angry with her from time to time.  There was this one instance when she learned to bite.  She pretended to try to kiss me on the cheek but bit me instead.  She smiled, hugely proud of herself.  After my anger diffused, I admit I was even proud of her since she was two and biting is kind of typical for a two-year-old.  She didn't have a long list of developmental milestones she met on time, ya know?  I digress.

I know of so many parents who have adult children whom they choose to dismiss from their lives.  I call them disappearing parents.  They all have their reasons.  I think there is very, very little a person could do that would truly justify a parent's absence from the life they purposefully brought into their world.  You know what?  Adults make decisions other adults don't like.  I feel absolutely certain that this precious, innocent baby boy who has me wrapped around his tiny finger will do something at some point that I will not like.  I may even hate it or be embarrassed by it.  I will never cut him out of my life.  You may say, "Oh, you just wait...".  No.  You wait.  You wait until a child you love with every fiber of your being is yanked from your arms forever.  You wait until you cry yourself to sleep at night because you miss your child and there is nothing in this life that seems worthwhile because that hurt is so deep.  Your adult child has done something you disapprove of?  Ask any one of us who has lived this grief if it is bad enough to cut them out of your life.  I wager none of us would say 'yes'.  

If you have children who are alive, they deserve you.  You don't have to like what they do with their lives.  I'll wager they don't approve of you wholly either.  You know what?  It doesn't matter.  Be thankful you have them and do whatever it takes to keep in contact.  One day, the choice won't be yours anymore.  

Mother’s Day in the Life of a Motherless/Childless Woman

Mother's Day has been my least favorite holiday for four years. You see if I want to be with my mother and daughter, my only option is to visit their adjoining graves. Mother's Day in a cemetery sucks ass.

My mom died in March 2006. It was a challenging Mother's Day that year, but because I had Olivia, it wasn't devastating. Two years later, I had no Mother's Day. I remember going to the grave sites and just weeping. I have many sad days in a year. I am working to be able to handle them better, but until the time when I'm again the mother of a living child, I don't know that the second Sunday in May will be anything but cause for heartache.

Having said all that, there are a couple of things that make this year different. First, marrying into the Sanders family netted me an amazing Mother-in-Law. She is a woman of strength, resilience, care and love. She welcomed me and treats me as one of her own. We've had some moments that she probably doesn't even realize are important to me. We sit alone and talk about very important things or not important things. She offers to make my favorite foods just because. She supports me in every way and makes me realize that blood isn't necessary to feel parented.

Second, a random person sent me beautiful flowers at work. There's no name on the card. No one will claim responsibility. The card makes me cry happy tears.

I also received a card and flower to plant outside from my little friend Ivy, who hangs with me two afternoons a week. To be recognized and honored as a mother, even though my daughter isn't physically here, means more than I can say. Thank you, Ivy, and mystery giver. Your thoughtfulness helped make this Mother's Day less sad.

Tomorrow, I get to celebrate my Mother-in-law. I will still go to the grave sites, but I think it will sting less because there is some happiness in the day for me. I hope so. Happy Mother's Day to all of my dear family and friends! Whether your children are with you or not, the title of Mother never leaves.

Talks with God and the Universe

I have an enormous amount of emotional baggage.  I'm working very hard to clear it out so that my future looks vastly different from my past.  I've talked about the specialized kind of therapy I'm involved in right now, EMDR.  It's hard to understand the concept, but the results are phenomenal.  Here's the link to my person's website if you want to learn a little bit. 

In my job alone, I am confronted with death regularly.  I am good, or so I'm told, with the families I serve experiencing this.  A nurse I work with thanked me yesterday out of the blue and told me heartwarming thoughts of appreciation.  Those are few and far between, but help make it possible to get through those emotional days. 

In my own life, I seem to know a lot of death, too.  It's not geriatric death, where an 86-year-old woman who's lived life to the fullest passes quietly in her sleep.  I see the deaths of children.  I have long thought, and said aloud that death is not the worst thing that could happen to anyone.  The children whose families I serve, as my Olivia did, suffer.  Sometimes, it's a short course from an accident.  Sometimes, it's years and years of a devastating illness.  Regardless of the whys, the loss is just as intense and painful.  No parent should ever outlive their child.

In my personal life, aside from the life-altering loss of my daughter, I also lost three other pregnancies.  I've come to terms with that over the past six months. 

What has happened the past couple of weeks is that I wonder daily, sometimes hourly, why.  I don't just wonder that about Olivia and my other losses.  I wonder why there is such sickness and hurt in the world.  It's not wars that take so many lives in my world. 

I believe prayer is like a conversation with God.  I pray often because I just talk to God.  I look to the night sky when I get home from work.  I talk to whatever is up there.  I'm such a small piece of all of that.  Surely there is someone or something that will hear me and offer some answers! 

I don't ask why Olivia had to die anymore.  My heart was crushed and pulverized that day of February 10, 2008.  But, for the first time in months, there was peace on her face.  I hold on to that. 

What I ask and wonder is: Why is there so much hurt and sadness and crap that descends upon blameless families?  When will the hurt lessen?  Does Olivia see that I never forget her?  Sometimes, I get my answers in the most unusual ways.

I opened my email today to videos from far away.  A like-minded mother friend in South Dakota sent me videos of her kids doing a balloon release to honor my Olivia.  My heart sang! 

I tell the families I work with or others who've gone through the loss of a child that their child will NOT be forgotten!  It's one of the biggest fears of a bereaved parent as far as I can tell.  My friend Stacy verified that for me. 

If you know a bereaved parent and I bet more of you do than don't, don't be afraid to say the child's name.  Don't be afraid to let them know your thoughts go to that joy of their life that is achingly missing.  Don't be afraid you'll make us cry.  We cry anyway.  It's good when there are tears that are more than just grief. 


My friend Kristen made this just after Olivia died.  I still treasure it. 

Video memorial to Olivia


I'll continue to talk to God.  I'll continue to look up to the sky to commune with the universe.  I need to feel connected to all of this that's so much greater than I am.  It's one of the few peaceful times I can count on.

Orphaned at 32, Adopted at 37

There are parts of my life that seem like fiction.  Let's face it, for those of us who believe in God, why would God let any single, decent human being suffer the magnitude of loss I had by the time I was 34?  I still wonder that on my really bad days and it has nothing to do with being ungrateful for the very good things in my life now.

My parents were divorced.  I never lived with my father in my memory.  My sister and I saw him often until I was about 11.  Now, we didn't have the kind of arrangement that is common today.  We never went to his house to visit over a weekend or even a night.  He came to us on Saturdays.  His visits diminished rapidly, then stopped.  I don't remember what brought about the knowledge that he was sick.  We found out he had ALS, Lou Gherig's disease.  I think I was sheltered from it.  My older sister was in nursing school, so I believe she knew more.  It seems to me that the whole process went so very quickly.  We were able to visit him a few times and then he died.  It was awful.  I feel like I barely knew him.  I had just turned 13 and was never going to know him.

My mom was a pistol!  She was the epitome of the independent, single mother.  She did it when it wasn't the norm.  She was on her own in the mid-70s.  She carpooled an hour to  and from work, then came home and helped on the tobacco farm where we lived.  She had grown up as one of 10 children.  The majority of the brothers kept up the farm.  Their impact is a whole other blog.  She was a very involved member of her church and we were there every time the doors opened.

My mom smoked.  She worked for a major tobacco company for 31 years and smoked for double that.  Five months before she died, she was diagnosed with lung cancer.  It's an ugly thing to watch.  I highly recommend quitting smoking if it's something you do.

Two days after her 75th birthday, just after I turned 32, as my sister and I held her, our mother died.  That early morning, I became an adult orphan.

Fast forward to 2010.  Kelly and I met 23 years ago when his sister and I were friends in high school.  In 2010, we reconnected and the rest is history.  One of the best things about our relationship, for me, is feeling so loved and accepted by his family.  His parents and mother, particularly, treats me like her own.  Maybe I just feel more connected because that's what I know; having a mother.  It's as if the day I married him I was adopted and am no longer an orphan.  October 29, 2011 is very special to me for more than one reason.

The Day My World Ended

I know technically my world is still rotating.  I am still breathing.  But, my axis, my center is gone.  Four years ago today - at 4:58pm to be exact - Olivia left this world cradled in my arms.

If you read my earlier post about her entry into this world, you might see something familiar.  Olivia was born at 4:58 am and died at 4:58pm.  She was born on February 5th and died on February 10th.  She died in 2008 at the age of 8.  My diva was all about symmetry, apparently.  She was amazing in every way.

I know I grew her.  I know I birthed her.  I know she looked like me.  I know she was mine.  BUT, I have heard for years, from many people that she was special.  There was just something about her.  She grabbed people.  There were people from around the world praying for her (thanks to the blog and list-serve in which I was involved at that time).  Each day, I could log onto my email and there would be digests or individual emails from Israel or China or Australia.  Some were worded in ways that were unusual to me.  That didn't matter.  It was the true love and caring that came through.  When she died, there were hundreds that poured into the church over two days to pay respects, some driving for hours to get there.  I was shocked and amazed and so proud of the way my tiny, wise, loving daughter had touched so many lives.

I know it may surprise you to hear that I did things differently.  Many are too personal for public consumption.  The easy parts to share are that I tried to keep some part of her life normal.  Olivia didn't die in a hospital.  She was home.  We enlisted hospice services.  There had been too many surgeries.  There were too many brushes with death.  There was nothing else to do to stop the demon that was the seizure monster.  So, we stayed home where she was happiest.  She was with her cats that she loved and who loved her.  Albert and Snooks stayed on her person or by her side as if they were fierce protectors.

She stayed on her Mommy as much as possible until my friends, or the Posse as they became known, forced me to shower and eat.  Although, toward the last weeks, people even fed me so I didn't have to put her down.  I didn't want to miss a single minute.  I cherished every second.  My God, there could never be enough of them!

From January 2 until February 10th, it was a waiting game.  It was gut wrenching.  I felt like my heart was ripped out, shredded and put back in a million times.  The last time, four years ago today, only part of it was put back in.  I haven't been whole since.  I am thankful for the love and devotion of those Posse members who have held on to me and kept me from tipping over the edge.  I am thankful for new ones who have come into my life to strengthen the rope.  Kelly is doing his part to be patient and tolerant of my lashing out.  I can only imagine what it's like to experience it when you didn't experience the event.

I lie here covered in my quilt made from her clothes.  It's been washed many times, but they still covered her at some point.  It's my way of holding her today.  There is nothing I wouldn't give to have Olivia Nicole in my arms again.  The only solace is knowing she doesn't have those damnable seizures anymore.

Thanks to one of the original Posse members, there is an actual star named Princess Olivia.  I've never taken the coordinates to a planetarium and looked, so I just look at the night sky and assume the brightest thing I see is it.  When you look up tonight, wave and say "Happy Angelversary, Princess O".  It's happy because there is no more pain and there are no more tubes.  That is how I keep breathing and standing on solid ground.

Regularly Scheduled Programming

I know I have bombarded everyone within earshot and screenshot with A Band of Ghosts and the South by Southwest Music Festival the past week/couple of weeks.  I truly appreciate your patience with me.  Final tally isn't in yet, but at around 11:58pm last night, they were in 2nd place.  It's looking good for them to make it to the next round, even if they didn't get the top spot.  This is amazing considering the other contenders had thousands of Facebook likes and/or friends.  ABOG has 428.  Their first video was posted to YouTube this past week and already has over 900 views.  They are really incredible and THANK YOU for voting and helping get them closer to an opportunity to show their talent to others.

Now, back to my shit.

You know what's great?  This SXSW contest has taken so much focus, it has kept me from wallowing in my sadness and grief that would have normally enveloped me by now.  Instead of working and going to bed immediately upon arriving home, I would Tweet, Facebook, email, and blog to get votes and raise awareness for this band I believe in and Kelly's talent.  Too bad it didn't cover the next two weeks.

Today, I went to get a steroid shot in my ass.  I know that seems off topic, but hold on.  This funky semi-winter weather is messing with my asthma.  My pulmonolgist does not play.  Via email, she managed to get me into her office for a steroid injection without an appointment in the span of about two hours and she wasn't even on campus.  I love her.  Anyway, the receptionist was a class A bitch because I wasn't in her computer.  I work in a pretty good sized medical center.  We're pushing good customer service right now and she was a definite no-no.  She sent me wandering through the back halls to find a nurse on my own because she was "busy with something else and you can see if somebody else knows what you're talking about".  Alrighty then...  She has no idea that I'm not a quiet person or that I know half the 12,000 people employed here.  I saw one of them, and simply mentioned to him she'd been a bitch and he went to get her manager.  This manager happened to have worked at the OB office where I went when I was pregnant with Olivia 12 years ago AND her name is Olivia.  Talk about a small world.

She asked how my daughter is.  Holy shit balls.  Not only did I have to say my Olivia had died, but being in the medical profession, she asked all those questions about the whys and hows.  She was very kind, considerate and not rude at all.  It's just different.  A bank teller would probably just cry and never dream to wonder if it was a heart defect, a chromosome defect on the short arm of 22 or a TBI with catastrophic results.

I answered.  I answered all of them and tried to talk about Olivia.  The problem is the timing.  I've been so wrapped up in other stuff that the emotional flood I thought was just a stream this year was, in fact, only held back by a dam of distraction.  I didn't get to tell her all the wonderful times and things about my Olivia.  I had to get through it as quickly as possible so I didn't break down.

I think I have to get back to my original plan...I need to talk...I need to write...I need to honor Olivia's memory.  I assure you, they won't be all sad.  My girl was fun!  She had a great sense of humor that was much more mature than her years.  She was definitely her mother's child.

Our song is in my head.  I love you Carly Simon for writing it.  I love you Anne Grant for introducing me to it.  We played it over and over and over.  She even wanted me to sing it to her.  Thank you Kristen Faulkner for the beautiful framed version on my wall.  And so it begins...

Photos by Anne Grant photograpy

Get Ready for IT

IT is pretty important.  I'm past midnight, so technically, IT's under a month, but only by 45 minutes at this second.

February 16th is the day I buried my daughter four years ago.  This time of year is a bitch.  Every day can bring something that is a reminder without the slightest warning.  It actually starts on January 2.  That was the first day she almost died. When you have a terminally ill child at home, there are no normal days. 

It is important to me that I honor Olivia's memory each year (truly each day) by celebrating her life and all that it was and not just the sadness that marks the anniversary of her death.  Over the next month, I want to educate about ACC (Agenesis of the Corpus Callosum) and introduce Olivia to those of you who never had the pleasure of meeting her.  For me, it's therapeutic to share the good and the bad.  Trust me, both are fantastic in the true meaning of the word and the bad is heavy. 

I'm edgy tonight.  My fuse is short.  That's almost always a sign that it's an Olivia day.  There will be lots of those in the coming weeks.  If only I had her here instead of the memories...

An Open Letter to Bereaved Parents (and Those Who Love Us)

What happens when you meet someone for the first time?  Whether it's a party, new job, or first date, the format is kind of the same.  "Hi, I'm Karen.  Hello, I'm Heather.  What do you do?  Are you married?  Do you have kids?" and so on.

For a bereaved parent, this is a kick in the teeth and a dreaded moment.  As time passes, we can sort of prepare ourselves and the sting is less severe.   When you think about those tiny, seemingly inconsequential instances being such a big deal to us, just imagine something like our child's birthday that we don't get to celebrate or a Christmas that passes for which there's no need to buy presents.

Then, there are all of the moments in between.  Being a bereaved parent changes a person.  I've said this over and over.  Those new members of my club are like bobble heads soaking it in and learning to live it.  My friend Steph and I talk frequently about writing a How-To book for newbies or especially their loved ones.  No matter how we try, people don't seem to understand how to be with us after our child dies.

The biggest thing for me is that you need to realize every part of every day is influenced by the death of Olivia.  I have a new norm.  I have moved on.  But, she is with me.  She will always be with me.  Ignoring that will only cause me pain.  If I am having a particularly bad day, and those are far less numerous than they were three years ago, then allow it.  Love me through it.  (Jill, I love that phrase and I love that you want to do it.)

This Christmas will be the fourth without the love of my life.  This year has been particularly harsh for so many reasons.  It is making the loss of my girl magnified right now.  Today has been one of the worst grief days this year.  I have cried for hours when I wasn't at work.  I talked with someone who has seen me through some of the worst of it.  I talked with someone who is new at it.  Both offered support from different perspectives.  The common thing is that they listened.  They asked what I needed from them.

The problem with telephones is there aren't hugs.  I need someone out there who is technologically minded to create a telephone with arms.  They don't have to be the arms of the person on the other end.  They just need to be arms that can hug when needed.  It could be an added feature like a data package.  Hugs 5/mo  $5.95  unlimited  $19.95.

I wish no one knew the devastating pain of the death of their child.  It never goes away.  It leaves scars on your soul that never go away.  I am a stronger, wiser, blah blah blah.  I am who I am.  I don't know who that is some days.  I am Kelly's wife and I'm trying to be a good one. I am a friend and I try to be a good one.  I am a sister, an aunt, a niece, a cousin... I am an employee to several and I try to be a good one.

I am Olivia's mother.  Being that without her to hold is the problem.

Every Little Thing

Steph, you're gonna think you're my muse. 

I am the queen of 'glass half full' thinking.  It may take me a while to get there for some situations, but I get there.  I mean, seriously, if I can take the death of my only child and find any positive thing to come out of it, then I have to have flowers to pull out of my ass, right?

I have come very close to losing that part of me this year.  Nothing worse than losing Olivia will ever happen to me.  There is no hurt, event, occurence, NOTHING worse than the death of a child.  However, when you've been emotionally beaten; when you've experienced loss after loss; when you've seen others experience those same losses; when you've seen people you love hurt and have their hearts shredded; when you bounce back like a Weeble over and over and over..............

There is a breaking point.  I've had a few over the past 3 years, 6 months and 19 days.  I came very close to tipping over the edge.  I was lucky beyond belief to have my Posse to grab on and hold me tight.  For those who don't have a Posse, they tip. 

I feel like a yo-yo.  I get close to my breaking point, then I pull myself back.  I get close again, then I pull back because in the deepest part of me I keep thinking everything will be ok.  I have been telling someone that for days now as she faces losing her child.  No matter what, it will be ok until it's not and then it's over.  That is how I have survived.  That is my mantra.  Everything will be ok until it's not and then it will be over. 

There really is a time to say "this is NOT ok" and I am there.