Say Her Name

Missy Moo

Every year for 5 years I’ve written you a letter for your birthday or around the time you passed.  It appears not doing it would be as much as a travesty as not remembering you at all.

To be honest – I meant to post this on your birthday.  I wrote it and I had it ready, but I never posted it.  I don’t know why.

So, here I am but at a total loss for what to say…afraid to address the immense pain knowing you’ve been gone 5 full, long years has caused me to feel.  I think I’ll try to explain…

They say grief evolves.  And for the most part it does.  Year 1 was this giant fog.  I said things like “I was blessed to be her mom.”  “She is in an amazing place.”  “I’m so thankful God gave her me.”  Now, don’t get me wrong – all those things are definitely true, but I said them as if the Holy spirit had entered my body and I was glowing like God himself (yes, this is a sarcastic explanation).  It was strange and looking back at how at “peace” I was.

But…time evolved.  Grief morphed it is ugly head.  My fog…my delusional peace…gone.

But then, shortly after, around 6 months I found myself walking out of Kohl’s Department store thinking “how the hell am I 40 years old and buried a child and my name will be on a headstone?  I kept thinking I’d wake up from this awful nightmare.  It seriously felt like someone was playing a cruel joke.  How did this become my life?

The one thing about year 1 is how much you brace yourself for each major event – birthday, holiday and death anniversary.  It is like you’re in an airplane and you get ready for a ton of oncoming turbulence.  Your knuckles are white, your heart is racing, you get angry at the flight attendant telling you it is all ok and really, you just go crazy just from the anticipation.  And then…the event happens and while you went ape shit holding on so tight, the actual day arrives and you sit back and finally collapse in relief. You made it.  You can breathe again.  It is here and you survived.

This describes almost every holiday and anniversary.  It seems for me the anticipation is far worse than the actual day.  Ironically, this feeling happens every year…not as bad each year, but I’ve talked to many parents who agree with the anticipation part.  (It sure is good to know I’m not certifiably crazy and alone in this insane ride).

When I rounded into year 2 and sat in church that day, expecting to wake up out of the fog and think I’d be OK, I felt the worst pain. Let me tell you – THAT was a shocker.  I remember grabbing a mom who had lost her son many years before and asking in total shock “why does this hurt so incredibly bad?  Aren’t I supposed to be getting better with this?”  Her response?  “Because now it becomes real. You made it through everything in year 1 when she wasn’t here – now you face the reality of this every day….every year.”  It was like the lights went on and I felt stupid I hadn’t figured that out myself.

And as I coasted into year 3 I finally felt like my chest wasn’t as tight and my heart didn’t physically ache so much.   And for once, I finally felt ok …enough.  Enough to explore another job.  Enough to say to myself “I am strong.”  “I WILL move forward.  I CAN move forward.”  Although this journey is life long, I felt like I could stretch myself more than just going through the motions.

This feeling helped me as year 4 came in where I actually kind of felt like I had super powers.  I had a new role fighting for the exact reason you were no longer here.  Seriously, put a cape on me and I could fly.  I started a support group for other grieving parents.  I talked to more families that lost a loved one than I can count.  I felt invincible in terms of grief.

Truly, I had mastered this grief stuff.

And then…just like that…it hit me.  That proverbial brick came crashing through and suddenly, I felt like I was in this shit storm of year 1, 2 and 3 altogether.  What the hell was happening?  Wait, the cape, the invincibility – where did it go?  Why was this pain creeping back in like a bad friend I had purposely left behind?

I sought validation from your dad.  I wondered if he felt the same.  Was it because Christmas was approaching?  Was it because the new year was around the corner? Was it because the new year meant that it would be 5 years?  Why is 5 so much bigger than 4?  Does 4 resemble some semblance of newness where 5 is forever ago?

I’ve always said you need to feel it to heal it but damn, the analyzer in me still exists.  The thing about loss is that it is as clear as mud.  Why your person is gone, why you feel this way, what you do with it, how you handle it.  Everything about it offers no explanation.  And I’m an explanation girl.  I need answers.

For instance, in year 1 I thought FOR SURE I would be dying next.  I know, I know… crazy thoughts. But that’s what loss does to you.  You might be wondering why I thought it was me.  Well, you see a few weeks to months earlier we were in the ER with you.  The ER doc asked me about recent meds, procedures, etc.  I spewed off about a half dozen things that had occurred. When you had this immunization and why.  When you were due in for this or that.  I knew it all and could easily share with medical professionals your medical history.

After the doc walked out your Dad looked at me and said “I can’t remember what I ate for lunch, how the hell do you remember all of this? I couldn’t do this – I couldn’t do this myself.”  I said “I don’t know how I am a walking encyclopedia but let me tell you this… there isn’t a day I do not lay my head down to sleep that I don’t pray for myself.  Yes, myself – to always be here for her and the family.  Because I know you are a wonderful, loving Dad but she needs me for what I offer her, what I know and how I advocate. So, I suggest, you start praying for me too.”

So, of course when you died, I figured I was next.  I lived in fear of what I would be diagnosed with and how much time they would give me.  I figured if God took you then it must be for a reason.  The reason is that he would soon take me because now Dad didn’t have to rely on me alone to help you.

Illogical thinking? Absolutely.  But that was the clear-cut answer I thought was for sure why you died.  I needed answers.  But, I guess like someone once said once to me – “you may never know why she was given this journey.  And as hard as you look you may never get the answer you are looking for on why she died.”

The roller coaster of emotions and thoughts this journey gives me is crazy.  A few weeks ago, I was talking to someone who also lost their child to epilepsy.  I was explaining how hard it was on me to be coming up to 5 years you’ve been gone.  And then I said, “grief is dumb like that.”  I had no better way to say it.  It is so dumb sometimes.  No answers.

For example, at one point in year one I sat in a support group thinking “why the hell are we all crying, they are dead.  DEAD.  They aren’t even here, and we are sitting sobbing.  Why?  How crazy is it that we are crying over dead people.” See, grief is dumb, sometimes completely illogical.  (by the way, these thoughts were fleeting and I have since started a support group for other grieving parents and find the time together extremely healing).

I don’t want people to believe that time heals all wounds.  Some are better at handling it, hiding it or dealing with it.  Grief morphs but truly doesn’t take away the pain.  I don’t want people to think that time should further silence the mention of you.  I don’t want people to think that time allows you to “move on”.  Time does nothing of the sense.

In my current job I’m working with some neurologists, grief counselors and other folks on a paper about grief from SUDEP (yes, I’ll have published a white paper when all is said and done!).  But one person suggested we cut off the time of grief at 5 years.  Two parents/advocates who had lost more than 10 year ago stepped in right away – wondering why 5 should be this magic cut off.  Or even 10.  One mom even said “I may have forgotten what has happened each year since, but I can remember THE day like it was yesterday.  I can remember the emotions of the first year and each year since.”

Sweet pea, I could go on and on about all my emotions.  At some point I feel like I’m just babbling hoping to justify, find answers, preach my truth or educate.  But, here it is if plain and simple is such a thing…

I wish I could see one more smile, hear one more squeal and have you give me one more stink eye.

I wish I could go back and see in like a looking glass to know what I could have done differently.  And I certainly wish I could see the future to know why you were taken.  What is the greater picture? Where is my ah-ha moment?  Or is it a accumulation of several moments?

Every sing day, I miss the feel of your bumpy skin and the smell of your soft hair.  I miss you drooling, licking, flicking and everything in between.  I miss your awkward walk.  I miss you reaching up to see if a picture on the wall would move and you swinging back and forth.

I miss the days I would be frazzled and come home to feed you to see you smile, grab my hand or give me sass to put it all into perspective.

I miss every single bit of your life with us.  Even as hard as some of it was.

You are one of the greatest gifts I could have ever had in my life.  And losing you has been one of the most painful things I will ever experience.

Someone recently said of another grieving “she lost her spark and the light in her eyes changed.”  I sort of feel that way.

So, know that you are thought of EVERY DAY.  You are loved and missed so much there aren’t any words to describe it.  Please keep guiding me. Please keep watching over us – we look for you everywhere and feel your presence so often.  Please keep guiding people to say your name.  Whenever and wherever.

Most of all, keep sending us sunshine when our skies are grey.  You truly have been our light in the darkness.

You are missed sweet pea.  I will always, always love you.  I will always be proud of you and live my life in hopes you feel the same.



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