This number keeps spinning in my thoughts.  5.  5 years.

I keep thinking how long she’s been gone and while right now it is only 4 1/2 the number five is approaching and it seems big.  Or bigger.  And for some reason more monumental.  Five. 5.  However I say or spell it – it is the same.

Quite frankly,  an unbelievable number…to me, at least.

I keep saying it…5.  And when I do I get this sad, empty, sinking pit in my stomach.  I can even get a bit choked up mentioning it or thinking of it.   And I wonder why this number is bothering me so much.

At 5 is there something in me that is supposed to change?  Does 5 signify the ability to be stronger, my heart less heavy?  Why is 5 throwing me for a curve ball every time I think of it?

Last weekend Tom and I were both out and about and met up at the grocery store. On the way home I watched his car pull into the cemetery.   It was ironic because earlier that day I thought about buying something for her grave.  But, I wondered if, per usual, he had arranged with the florist to have flowers placed there.

Later, during a rare date night I asked him why he went to the cemetery.  He mentioned he had a wreath made and placed.  I told him of my intentions of stopping there but then didn’t.

He said he rarely goes – it makes him sad to think of her in the ground (my thoughts too, by the way) but he wanted to see the wreath. He showed me the picture of the pretty  wreath adorned with pink ornaments neatly sitting by her grave.

He then commented on how strange it is to see your own name on a headstone.  I laughed (ironically, not because it was funny) but told him I  think of that every single time I go.

My name on a headstone.  That’s not something that is supposed to happen until you are much older.  Not in your 40’s.

But, then as you see your own name, you also see your child’s. And to know that your name is there because she isn’t.

It seems surreal and very real all at the same time.

Then I said to him what I keep repeating to myself “it will be 5 years in May…how is that possible, how is she gone 5 years?”  And I started to choke up.

I was hoping his response would be similar to mine so that I could try to better understand why it was bothering me so much.  I even stated how hard it was to digest this number and wonder how it was possible, but he didn’t seem as phased.

I felt like while he understood I didn’t have any additional clarity to my height of emotions around this number.

I started to really feel pained about 5 when I put up her Christmas tree this year.  Looking at the ornaments from her first Christmas.  Ornaments she made in school.  Ornaments St. Nick brought her.  I remember every ornament, every moment.

And then, as I put up her stocking I thought about 5 again. What does this mean? Do I keep putting up her stocking?

Grief, to be honest, is this awkward topic within society.  It always has been.  I’ve tried to educate on it because quite frankly if you haven’t lived it you have no idea.

I have found it interesting to hear people who haven’t lost someone they love, like a child, having the authority to judge others grief.  They want to be able to tell you to “move on”, to smile when you want to cry, or it is strange or creepy to to this or that ritual.  People judge whether your form of grieving is the right form.

But there really isn’t an answer on how to grieve when someone you loved with every fiber of your being is no longer with you.

Every year, at Christmas, I ask friends and family to send us something to put in Lydia’s stocking.  A card. A quote. A memory.  It doesn’t have to be big.  Just something for us to know she was/is loved. Something to let us know she is remembered. Something for us as parents to help fill the void and the hole we feel.

Every year I’ve seen less and less come for the stocking. I realize life gets busy. I realize there are thoughts about what I should and shouldn’t do to remember my child.  And I realize that some just don’t remember because it has fallen off their radar.  I get all that.

But this year, the fear of the empty stocking sends me into a tailspin, full on cry (I’m sorry friends who have heard or saw this firsthand).  Even typing it put me in this uncomfortable, emotional space. The one where you push down the lump in your throat and blink off the watery eyes.

And my analytical self starts to evaluate my emotions.   Am I just the one that won’t let her memory go?  Is the fact that 5 years is coming up now playing into this empty stocking?  What will year 6, 9, 15 look like?

Does the empty stocking symbolize the time to “move on” and not have it filled with the love we’ve received?  Does the empty stocking mean that people have forgotten?

And then I realize that for 4 1/2 (almost 5 years) I’ve woken up everyday to this nightmare. That everyday I put on a smile, throw out a laugh, go to work with passion, and love those around me all while painfully stuffing away how much I miss my little girl.

Everyday…for the last 4 1/2, almost 5 years I’ve managed this.   And for just a few days I year I want her remembered.  Her Birthday, the day she died and Christmas.

Why? Because dead or alive she is my child.  I gave birth to her.   I cuddled her, I challenged her. I cared for her.  I cheered her in her victories.  I advocated for her.  I was her everything and her mine.

Dead or alive, I still very much love her.

And in death, I miss her just as much.

Nothing about death should allow her be forgotten. Or minimized.

Nothing about death should allow her name not to be mentioned.

Nothing about anyone’s view on death matters.  Only the way I want to honor and remember her is important.

I know a parent who lost their child to SUDEP as well.  The mom recently spoke at a conference and shared (with a crack in her voice) how her husband visits their child’s grave every day.  Since her son has died – 16 years ago.

And with that I felt it.    The pain of that statement.  He has gone every day for 16 years.  16 years. Even with that amount of time, his love and dedication to his child in death is unshakable. And ever lasting.

People often ask me after a friend or loved one experiences loss what they can do to help.  I always explain that making food, doing some grocery shopping or laundry or giving family member rides to places in the immediate term is always helpful but often forgotten. Not because it isn’t appreciated but because the fog the person is living in at that moment.

What I stress, however, is the importance of being there after 6 months and 12 months – still helping out with those things because that pain and fog stays long after the immediate help is gone.

And I further point out that year 2 is often more difficult when the reality has set in and you are feeling more alone than ever.   And remembering them at year 3…and so on.

I realized then that no matter the time, the adjustment to the pain morphs but the hole remains the same.  5 years.  16.  Even over 30.

So I’m scared for the empty stocking.  I’m terrified of 5.  I’m scared someday she will be forgotten.  And maybe, more so, I’m afraid of going through this loss and heartache alone  – which I’m not ready to do.  At least I don’t think I can do it alone…yet.

So, I ask you a simple request – remember her and say her name. Always, please, just say her name.