Happy Chanukah! Merry Christmas! Happy Yule!

 

Christmas 2016 will go down as probably the happiest in my life. It is also breaking my heart.

 

 

 

In all of Olivia's 8 years, I never had to fib, sneak, or hide to surprise her on Christmas morning. There ARE advantages to having an immobile child! Tonight, I did all of those things so that Emory's eyes would pop out of his head in a few hours. I also never saw her jumping up and down with excitement. I didn't hear her say, "Can I have this?!" twenty times a day when hearing about other kids' wishes or seeing a commercial. I never got to see her run to Santa and eagerly tell him what she wanted to find under the tree.

 

Santa has come to our house tonight. With the help of special people, Emory is going to have an amazing Christmas. I love seeing him in his wonder! My heart is so sad, even after all these years, that putting a tree on a grave is all I get to do for my daughter. I am trying to focus on Emory. By doing that, I think I've set off my mom guilt. In my head, I know it doesn't mean I forget her or love her less. Oy!

 

I hope you all have blessed holidays, whatever you're celebrating. Much love from our family to yours!

 

 

Widowed at 41

On Tuesday, May 19th, I came home from work and found my 37-yr-old husband dead.

Let that sink in. Really, let it sink in.

The initial shock and trauma have passed. The memorial service was beautiful and arranged to a T as Kelly had requested. His parents have now become part of the group of bereaved parents that I never wanted to be in. I am a widow at 41. My child is fatherless at 2.

In the past 8 days, I have seen sides of people that are surprising, shocking even, to me. My friends have been amazing, as they always are. Three core members of my posse dropped everything and came to my side the night I found him. They stayed with me for hours as my house was combed by police and my husband taken from here for the last time.

There are others. Others who believe they knew him better than anyone else. Others, who, believe that they have "rights" to him. I have spoken to people individually. I have tried to be reasonable. It hasn't been successful. This is why I write today.

We have been married a little over three years. We have been together for five. We have lived together for four years. So, during the past five years, I saw him almost every day. It was I who held Kelly when he was scared, crying, or sick. Were you there when we lost two pregnancies? Were you there when I threw up for hours on end, day after day, for 22 weeks of my pregnancy with Emory? No, but he was.

Were you here when we bickered? Were you here when the ugly sides of both of us came out? No. You may have heard from one or both of us, but you didn't see what really happened. My friend, Julie, saw more than most. She had the unfortunate knack of being here on a couple of days when ugliness was spewing. I believe she would answer questions if you really want to argue what you think you know.

There are people who have started social media pages and events using my husband's name without my knowledge. When I asked for that to be stopped, not only was my request not honored, I was criticized and disrespected.

My heart is broken. It breaks over and over. I come in my door and see the place where I last saw Kelly and it wasn't pretty. My beautiful, wise child asks in different ways every day for his daddy. I am the sole party able to handle the legal aspects of his death. I am out of work, so there are financial concerns.

My funny, sweet, imperfect husband has been dead for 8 days. People, you need to back off. Things I may be happy to see occur in the future are not appropriate now. I cannot believe that I am being pushed about festivals! For the love of God and the memory of the man you say you love, please stop. Please let me grieve and try to get my life in some kind of new order. I should be doing nothing except necessities and taking care of Emory.

Thank you to all of the family, friends, coworkers, and strangers who have shown me love and compassion. You are greatly appreciated and cherished.

New beginnings

Our baby boy has arrived!  Emory was born last Monday, March 4.

I have identified myself as a bereaved mother for the past five years.   Now, I can just identify myself as a mother again.  The past week has been full of mixed emotions.  By far, the overwhelming ones are joy, happiness and gratefulness.  Sorrow and grief have crept in a few times.  Missing Olivia has been enhanced by the love for her brother.

I wondered all throughout my pregnancy if I'd be able to love another child as much or as intensely as I loved her from birth.  They are very different and the feelings aren't the same, but YES, I am able.  I am so in love with this little face.  I find myself just staring at him with tears streaming down my face.  How did I get so lucky?  So blessed?

My heart is full to bursting.

It's That Time of Year

Where were you 13 years ago?  I was in a similar circumstance.  I was 39 weeks pregnant and about 4 hours into labor with the baby who would be known as the world's most beautiful girl.  You may scoff at that.  If so, it's because you never saw her.

I never dreamed I'd be pregnant at this age when I was giving birth to Olivia.  I never dreamed what the next 8 years after that night would bring either.  I dreamed of everything every young pregnant woman does.  I dreamed of snuggles, kisses, diapers, preschool, kindergarten, bikes and dolls.  I never dreamed I was entering a world of hospitals, doctors, and death.

I remember that night vividly.  It isn't only the pain I remember.  I also remember the tears that exploded from my eyes when I saw her for the first time.  I remember the feeling that my heart, the literal center of my chest, would explode at the love I felt at that moment.  

I can't remember Olivia's birthday without remembering her angelversary.  They come only five days apart.  That seems such a cruel twist of fate.  I don't know if the pregnancy hormones make it worse this year or if it would be the same regardless.  I have been sad for several days.  I have had a shorter temper.  I have had horrific nightmares and sleepless nights.  Will it change after Sunday?  The grief never goes away, but its sharpness dulls over time.  At these special dates, the edge of grief's sword is dangerously sharp.

On the way home from work tonight, I heard one of our two songs.  I Knew I Loved You doesn't really play on radio stations anymore, but I'd like to think it was a gift to me.

The tears began to flow as soon as I heard the first notes.  I fear the next 24 hours or five days may be the same.  I'm a few hours early, but, I didn't want to count on waking up at 4:58 am to publish this.  Happy birthday in heaven, my angel.  There is nothing I wouldn't give to kiss your sweet face again.

Merry Christmas to All

It's just two days before the magical day of Christmas.  I'm snuggled on my sofa in a super warm blanket while Sookie and Kelly snooze away.  Emory is awake and moving around to let me know he's ok.  It's a pretty fantastic morning.

Many of my blog posts have been about my status as a bereaved parent, like this post from last December.  I think other than my physiological being as a female, this is the most predominant part of who I am.  Maybe other bereaved moms feel the same.

This year, you have seen many posts about my impending motherhood.  This baby boy inside me has transformed not only my body, but also my heart and mind.  Although my heart still weeps with sadness at the absence of my Olivia, it also swells with joy in anticipation of her brother who is on his way.  Instead of focusing on the memories of the last four Christmases without her, I am more able to think of her first Christmas.  I vividly recall Santa coming to our home so that we could get those precious photos of her in a black velvet and gold satin dress without exposing her to all the icky illness around.  I can remember with a smile the first time she chose the color of lights on our tree and thus started the blue Christmases.  The tears in my eyes as I write this are joyful, not sad.

There will never be a Christmas for me that isn't tinged with sadness.  However, for the first time in a long, long time, there is more happiness than that and it wins.  I am happy this Christmas.  I have a loving husband who is going to be a wonderful father.  I have a job I love.  I have friends and family that keep me in line with love and humor.  AND, the best of all, it's only a few short weeks until I can hold my son in my arms.

I wish to each of you that your holidays, however you celebrate them, are filled with the people and things you love.  If you're like me and love it, I wish for a peaceful, snowy day, too!   Merry Christmas to all.  May your world be everything you want and need!

Merrell's Are Not Acceptable Bike Wear and Other Observations

Whew!  I'm home!  Sookie is glad.  My body is glad.  Kelly doesn't ever want to come home.

Two weeks ago, I was headed to the 5th International Family and Patient Centered Care Conference in Washington, D.C.  Last week, we were heading to the Outer Banks of NC for vacation.  Soooo much has happened!

The Conference:
It was phenomenal.  That's the only way I can describe it.  I was surrounded by people who believe in what I do for a living; who value my education, but also value my life experience and its role in my work; and by some of the most incredible figures in health care in the world.

I learned so many interesting and valuable things that apply to my hospital work and also to life in general.  For instance, if you have a user name on Twitter, a blog, Facebook, etc. search it on Google.  I had over 5 pages of hits on mine.  I had no idea that much was publicly available!  Also, prospective employers do that as well.  It's a good thing I only swear about personal things.

The VP of Canada's largest health system said we were the best presentation of the conference.  Wowzas!  Ummhmm, yeah, yeah.  I shook my tail feathers on that one.  People from stellar facilities suggested we become educators in FPCC.  I am humbled and awed.

I discovered that getting down into the Metro was a little like a snowy mountain scene in a James Bond movie...I have a picture in my head, but I can't figure out which movie...It's just this cavernous tunnel burrowing crazily into the ground.  I've ridden the NYC subway dozens of times, but the D.C. Metro threw me.

I discovered Lady Anti-Monkey Butt.  What is THAT, you ask?  It's this fantastic anti-friction powder.  Great for hot days and bras or thighs.

Finally, Jenny Lawson's book Let's Pretend This Never Happened made for great plane entertainment.  My manager and I read together and were so boisterous with our laughter that we met a woman at the hotel who recognized us from that!   


Next, the beach!

We went to Nags Head, Outer Banks, NC.  Those are the barrier islands off the NC Coast for which lighthouses and pirates are famous.  For those of you familiar with my fear of bridges, you'll understand that this is a HUGE deal.  There are three doozie bridges, one over 5 miles long.  It's not a beautiful scene either like the 7 Mile Bridge in the Keys.  That aqua water just soothes my anxious soul.  Anyway, we made a convoy of Sanders from here to there.  It was great driving and we arrived to beautiful weather and waves.

This is literally just out of the car: 

I'm slightly less pale, except for the myriad skeeter bites on my face and body, today.  I'm much more rested.  I'm more literally rounded, having read four books in 5 days.  I'm puzzle queen after this monster, which I did not complete on my own, but I was obsessed by it.







The winds picked up to storm-force yesterday.  This morning it was still so bad that it blew the hair wrap off my head which was drying my hair.

Our ride home was adventurous.  I saw an El Camino and realized it's the original hybrid car.  I saw a man on a Harley sporting Merrell's.  REALLY?  In what HOG chapter or Gran Torino scene do comfort clogs go with a kick ass motorcycle?  I am driving down I-40 as excessive speed and those suckers stood out in the lane next to me.  Seriously shaking my head at that...

Home Sweet Home it is, to mounds of laundry, a lonely cat and dog, my Altima (a story in itself) and my bed.  Ahh, my bed...see you soon, friend.

Support, Not In a D-cup Way

I am struggling to do something to help others that is not in my day-to-day work.  I am a codependent to the core!  Having identified that in recent weeks, I'm breaking out of it and learning to redirect my tendencies.

Before Olivia was terminally ill, I wanted to work with a hospice organization.  I wrote my graduate school essay on it.  In my personal life and work life, I have gained a tremendous amount of intimate knowledge of the dying person and process.  I am not a licensed professional.  I am a bereaved daughter and mother and peer support person.

I am wondering about starting a peer support group for bereaved parents.  In discussion a few years ago, there was interest to have one locally.  A few of us met for coffee once.  But, the actual committee that met determined that a structured program led by a therapist was more in line.  The other moms I knew then and I disagreed.  We wanted people who had walked our walk to talk to.

I find myself doing this all the time anyway.  I am wondering if there is interest in the triad/Piedmont area* for such a thing?  If you will, let me know either publicly or privately.  I have another mom who is interested in helping get it off the ground as well.

Gifts our loved ones have given us can't be measured by the years they lived.  These gifts are measured by the love we shared with them. ~ Pat Loder



*Mt. Airy, Pilot Mountain, Winston-Salem, Greensboro, High Point, etc.

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.

Letters of All Kinds

I like to write.  I write for lots of reasons.  I write as an outlet.  I write because I can communicate better that way sometimes.  I write because I want to be heard. 

I write letters.  I write letters three or four times a week.  I have written letters to living and dead people.  Most of my letters are private.  I say what I need to say because it helps my process.  There are letters I've written that are public.  One, I wrote to Olivia after she died and it was read at her service.  I didn't read it.  I couldn't.  It still brings tears to my eyes to read the copy framed on my living room wall.  One, I wrote to Bereaved Parents and people who love them, published here.

 My friend Stephanie and I talk often about what a shitty club it is, the group of moms whose babies and children died.  There really isn't a name that fits.  There is a national group called Compassionate Friends and they have monthly or weekly meetings.  But, the real name of what and who we are...that is harsh.  For months and months after Olivia died, I didn't know how to introduce myself.  She was very well known in the community, so I always said "I'm Olivia's mom".  After, I would flounder and say "I'm, uh, my name is, Karen.  I'm, umm, my daughter was Olivia."  I couldn't even identify myself. 

The things people say to people like me range from insensitive to atrocious.  People wonder why I am not close with my family.  Example:  family member after Olivia's service, while the grave is being closed..."this was the best thing that could have happened".  Luckily, I was too crazed with grief to react as I normally would, which is punch him straight in the face.  Really?  the best thing to have happened to my only daughter was death?  I like to believe it was meant in the spirit of her suffering had ended.  I don't know and I'll never know because I distance myself. 

I also write letters for proof.  Phone conversations can be denied.  Sometimes, even words in color, in 3D, words that can be touched are denied.  We are all good at self-preservation.  I am Queen of it.  My heart has been hurt too many times.  I will hold that shit over you if need be, thus the written word.

I love receiving letters, too.  We have a white board on our fridge and my husband writes wonderful letters to me.  I usually snap photos of them before they can be erased.  I don't want to forget or for him to forget he felt that way on that particular day. 

I have a box of cards and letters from the days preceding Olivia's death.  My friend Chris brought it, I believe.  It was stationed by the front door and people who came by could write a note or drop something in there they'd made ahead of time.  I pull it out sometimes and weep at the words and thoughts conveyed. 

I know you are all busy.  Think of my blogs as letters to you.  I am writing because I want to express thoughts and feelings that might otherwise stay hidden.  If you have thoughts and a moment, write me back in the comments or by email.  I love to hear if something I penned, or typed, impacted you. 

Here is one of my love letters from the white board.  Maybe because he is a creative being is the reason I get them.  I just know I'm lucky I do.

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.

Stormy weather...why didn't Al Roker mention this???

There's a neurological term called storming.  I'm not a doctor.  I used to play one on tv opposite Dr. Drake Ramoray (just kidding).  I'm not a nurse.  Anyway, I know it has to do with your heart rate rising like crazy and sweating a lot and I'm sure many other things.  I probably should have called my neuro ICU nurse friend for a hot second before I started writing....I digress.

About a year after Olivia died, I was diagnosed with PTSD .  Most people think of it associated with military people/veterans or survivors of natural disasters.  I was told I had survived kind of the same things watching Olivia's massive seizures for so many years, coding, resuscitation, resuscitating her myself once and then her dying in my arms.  I had vivid, horrid nightmares, which turned out to be flashbacks.  I rarely slept.  I developed a heightened startle reflex.  I cried all the time.  Sad didn't even begin to describe it.

It was very much like storm in my brain when I tried to visualize it.  Picture the streaky lighting flashing across the sky, bolt after bolt.  Clouds of varying shades of pale to silver to gray to charcoal and they are monstrous.  Some of them may seem to be reaching down for the ground around you.  The wind is blowing as if you're Dorothy and your house is about to be transported to Oz...this is how it felt and feels in my brain sometimes.

It has been like that many times the past few weeks.  I was not expecting it.  It has taken me by surprise kind of like the honey badger snatches a cobra.   I wonder if it is the fact that I experienced happiness this past year and my guard was let down?

Regardless of the reasons, it happened.  I've been a woman on the edge for weeks.  Add in the God awful steroids coursing through my system courtesy of my damn asthma and I'm sure there are some who'd call me a raging bitch.

I was able to get Olivia's birthday flowers placed.  That took away some of the anxiety.  I swear, one of the afternoons or sleepless nights, I'm going to tell her story.  I just have to be able to keep steady fingers to type.  

Ratel is back

There comes a point when anger overrides hurt.  My heart has hurt all week.  I am a softie.  I let my feelings get hurt very easily.  I have expectations that people will treat me the way they want to be treated.  No, I do not do that all day, every day, but it is something I inherently believe.  There are those near and dear to me who have heard the concept and that is all.  I am sick to death of excuses.  I want to vomit every time mouths open because I know it is a load of shit about to be dumped.  I excused myself from a situation yesterday that may temporarily cause some inconvenience for these folks.  I'd much rather that happen than my baggage cause them emotional damage next week.  My Olivia emotional baggage can fill the car of an Amtrak train.  And hell yes I'm dealing with it today even though it's not her actual birthday or anniversary day!  What an idiotic thing to say! (different situation yesterday)

Sometimes, I feel like I am either completely losing my ability to communicate with people or some people simply cannot fathom how horrendous and difficult even the smallest task can be right now and over the next few days.  **NEWS FLASH**  I am struggling to get out of bed, shower and make it to work.  If it weren't for The Bloggess and Jon Stewart  (mocking all political news-especially Mitt Romney's idiotic blunders) to entertain me, I'm not sure I would make it through the next 7 days.

                 My spines are up.  I am Ratel.  I don't care.  I don't give a shit.  I am a badass. 

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...

Thank God That's Over

Christmas present is thankfully Christmas past now.  There were definitely good moments, don't get me wrong.  I love being a Sanders.  Kelly's family has welcomed me with arms wider and warmer than I could have ever asked.  We started a new tradition with my cousin Shannon and my sister (husbands as well) today.

Christmas Day continues to hold a chunk of pain.  It isn't a joke when I say I need a tropical island escape.  Beaches are always where my mind goes when I think of peace.  Right after Olivia died, a friend and I took a trip to the Keys.  I thought of that multiple times yesterday.  I would love to have had my toes in that beautiful sand where thoughts could drift along soft breezes to the sound of  lightly crashing waves.

 That first shot was from the beach the day after a storm.  Appropriate, huh?  The bottom is from the back door of the house where we stayed.  So serene...That's how I want to feel when I actually feel so messy and turbulent on the inside.

As we move into the most turbulent time of year for me,  we'll see how many days of serenity happen.  I will not expect the worst.  I just accept that it is always possible.  I don't kid myself.  That is setting myself up for the worst to happen and then some.

Now, I need someone to take away all of the effing Christmas candy that is so damn tasty.  It is not a food group; it is not an acceptable diet plan; it is not a method of controlling my asthma!

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.

You Wouldn't Like Me Angry

where did the bunny come from?

Like the Hulk, don't make me angry....

Let's be brutally honest; even if not publicly, then with ourselves.  How many of us mothers would always, capital A, put our children first?  Casey Anthony's mother did in the end.

I don't even mean to go that far.  I think she committed a crime in itself, but I'm making a point.

My point is that for 12 years, pregnancy and death included, Olivia has been number one in my life.  I was brought to tears this morning when another ferocious Mama Bear endured the heat to Princessify her grave once again.  MP, you are tha bomb.  I was brought to tears again this afternoon when I was berated for announcing and showing the condition of Olivia's grave by another mother. 

As any bereaved parent, mothers specifically, will tell you:  There is not the tiniest way in which anyone can begin to comprehend this walk unless they are walking it.  We hope you never comprehend it.  I believe it takes mothering to a whole new level.  It's as if we guard our mother status like the Pentagon, particularly those of us who lost our only children.  Guarding Olivia's grave is all I can do for her now.   You mess with that, you're messing with dangerous territory.

I will not back down.  I will not apologize.  I did  nothing wrong.  My daughter's life, death, and memory are far more important to me than anyone or anything else.   I'll accept my judgement from God himself and no mortal, thank you very much.