love,

jessica

We gather around the table.  The kids have a friend for dinner.

Axel:  ”Can H hold Tuesday’s urn?”

Um, why not.  Kids love to hold things, right?

Me:  “Here you go.  Be careful.”

He holds it with this confused smile on his face.

I fake some sort of normal reaction and say nothing.

Kid:  “Thanks.”

Me:  ”You bet.”

I wipe my sweaty hand on my apron and reach for my wine.

No one mentions that the little jar he’s holding hold’s 1/5th, (minus the 1/2 that’s under a weeping cherry tree in North Carolina,) of their buddy’s sister’s remains.  I don’t even know what that’s supposed to mean.  Does he wonder why the hell he’s holding this jar?  If he knew would it freak him out.  Would he run screaming from the house?  Would he not want to stay the night if he knew she died here?  Could he ever begin to understand that it was a beautiful, sacred moment?  Not the scary thing it sounds like.

I dust those 5 little urns, because 5 urns made sense when we had 16 hours to plan for “arrangements.”  I’m sure we should have given it some forethought, but well, you know.

Now I’m thinking about painting a wall, because I’m always thinking about painting or re-painting some wall to make this space in which we live feel different.  Better?  Should I take the urns in to consideration?  They look nice there now. We can’t have the new wall clashing with the urns.  Will I always have these 5 little urns on my mantle?  Isn’t that where you’re supposed to keep your urn?  I read of a family who put their beloved’s ashes on top of the tv, but we’ve got a flat screen and that just seems f’d up anyway.  It makes so much more sense to have them on the mantle, where you see them in movies about people with dead people in their family.

If you don’t have a mantle, than you are forced to have the same conversation we had while living in the RV.  Where do you hang the stockings?  You wind up taping them to something that makes some sort of sense to you, and that must be the reason the urn winds up on the tv.

I think I imaged that the kids would move out someday and want to take their sister’s ashes in the little urn they picked out when they were 2.5 and 5 and 7, to what, college?  Their first apartment?

“Yeah, I picked up the couch on Craig’s list and it’s my parent’s old t.v. and that little, tiny urn on the milk crate next to my docking station, oh yeah, that’s my sister’s urn.  I painted the wall to match.”

Perfect.

So here I sit, at the table having lunch, looking at those little urns.  I guess instead I could be sitting here thinking about the faded, fake flowers that someone left at her grave that I need to go dust off.

*If you have a judgmental comment you’d like to leave, please feel free to stick it up your ass.

Dear Bereaved Mom,

Bereaved.  Bereft.  I hate that dumb-ass word.  No one in the real world uses it.  Just us.  Just us “bereaved” people that can’t find a real word that doesn’t suck.  Just us that live just beyond the real world, where the sidewalk ends.   Anyway, I read your words about R’s leaving and all.  Oh, how I felt them.  Did I write them?  I read them and I wanted to tell you that at 2 years and 4 months, I’m still looking for her.  I wanted to tell you that at 2 years and 4 months, the same amount of time that she spent on this planet, I still freak out when I only spot 3 in the crowd and not the 4 that I know I have.  I wanted to tell you other things, too.

Did you imagine that you would make a hair appointment right after your child died?  I sat in that chair some 70 hours after she died and had all my hair cut off.  That girl with long hair had a dead kid.  I’d like my short hair back, please.  I sat in that chair and thought, “She must think I’ve lost my fucking mind.”  I’m still not sure that I haven’t.

The gift of shock.  I re-did Piper’s room from top to bottom the next day.  Went shopping for new bedding.  Didn’t want her to look over at her twin’s empty bed even one more night.  When they wouldn’t sell me the floor model of the quilt I wanted, the one with the two little birds, I wanted to scream, “Her twin sister died yesterday!  Just sell me the mother fucking quilt!”  Wouldn’t that have been awesome?

Did you sit at that baseball game feeling like you were doing it all wrong?  Like they all knew how to have a newly dead kid and you didn’t?  My God, are they seriously at the School’s Winter Festival less than 24 hours after their kid died?  I would have to be institutionalized.

I don’t know.  I still don’t know much of anything.  These are a few things I know:

1. Time does not heal all wounds.  This is bullshit that makes other people feel better.

2. You are still capable of laughing so hard you cry.

3. Your children (and your husband) (and you) will be pretty much ok.  This might piss you off.  Your Brother Is Dead!  Act Like It!

4. Everything is more beautiful and precious.

5. SIGNS are real.  Don’t question it.

6. You will be pissed off a whole lot more.  You will still be happy a whole lot too.

7. You will think that you, and everyone you love, have cancer.

8. They probably don’t.

9. You are insanely strong.

10. You don’t want anyone to tell you that you are insanely strong, because, fuck off, I’m not strong, I’m weak and broken, can’t you see that?!  Why the hell am I grocery shopping?

So, there is a weird little list for you.  It’s not official or anything.  I just made it up on the fly.  It might change tomorrow, but that’s what it looks like at just shy of 2 years and 4 months and a couple glasses of wine on a snow day in May.

Oh, yeah, I also wanted to tell you, that although everyone will say stupid things, it’s because they love you guys and love R.  Or, maybe because they are stupid.  People will reach out to you and try to offer advise and insinuate that they know a thing or two about how you feel or what you’re going through.  They mean well.  (I mean well)  And it’s true, it’s the worst thing that you can live through, but you will think up even worse.  He’s missing, but someday you will come to a place where you know he’s not actually “missing”.  He’s got to be somewhere, because you can still feel his presence.   It’s the parents of the actual “missing children” that I pray for the hardest.  My prayer for you is that you continue to feel his presence and eventually find peace in knowing you will be together again.  Whatever and whenever that may be.  It can not come soon enough.

I’m so sorry that R had to go.  I asked T to show him the ropes.

peace and love and tears,

Jessica

Tuesday’s mama

Autumn Burke, you are amazing.  Thank you.  We love you.

2Pe 3:8
But, beloved, be not ignorant of this one thing, that one day is with the Lord as a thousand years, and a thousand years as one day.

We were in the American Folk Art room at the Milwaukee Art Museum.  There was a painting by a little known folk artist; a pie chart of history according to the Bible.  Blue, White and Red pie shapes, each pie representing a “one thousand year day” and all of the “important” events that occurred on that 1000 year day, like the first sunset, the great flood, and the birth of Jesus.

I like that crude pie chart.  I get it.  It has been two years since Tuesday’s passing, but it feels like 1000 years. It feels as I’ve lived a hundred lifetimes and that it’s only been 1 day since I held her last.  A lot of “important” things have occurred, but the only thing that the stands out is that my daughter just died.  Can I still stay just died?  After all, It’s been 730 days, or 730,000 years, according to the pie chart in house paint on a plank of wood.

The heart doesn’t know time, but the soul can’t deny it.  My heart  aches as it did the first day and the 100th day and as far as I can tell, will still ache on day 1000.  My soul, however, feels the sadness and the cold and the dark of January even without a calendar or reminders of the date.  It feels that this is the season that she died and I would feel that even if I were in a cave for a year.  Or 1000 years.  or a day.  The soul knows.

2 years.

I still feel like a high functioning sociopath.

I’m happy/I’m sad.

I’m getting my shit back together/I’m a mess.

I’m hopeful/I’m pissed.

I’m better.

I will never be better.

I’m ready to get off the rollercoaster.

But when we get to that last hill, it just starts climbing again.

Time does not heal all wounds because time is of no matter.  1 day or 1000 years; it’s all the same.

This doesn’t meant that there isn’t healing.  We are healing.  We are different, but we are healing.  I’ve found that when you don’t recognize yourself, its best to return to those things that have always brought you joy.  There is a lot of focus on travel and music and art and friends and giving.  I’ve also found that sorrow and pain should be welcomed.  Sit with it and hold it’s hand.  It will only stay just long enough, and then you can go back to the travel and music and art and friends and giving.  Feeling the pain big gives way to feeling the joy big.  There is much to be thankful for and much to enjoy.  I’m choosing to enjoy.

After all, this will all be over in a day.

Hi my name is Spencer.  I’m shaving for St. Baldrick’s again because my sister Tuesday died from Neuroblastoma on January 30th, 2009.  This is my second year and I want to do it for at least 7 years so I can get on the Knights of the Bald Table.  I’m shaving my head for St. Baldrick’s because it raises the most money for childhood cancer.  Please look at the St. Baldrick’s website.  You can join Team Tuesday too.  It doesn’t matter where you live.  I hope you will support me in finding a cure for childhood cancer.  Thank you.

I know.  Super sweet, huh?  Yes.  It kills me.  Go here to see the beautiful photos from last years’ event.  And then search for a St. Baldricks event in your area and sign up!  Or sign your kid up.  Or your husband.  Or your wife.  Or your neighbor.  Or your boss.  You may or may not want to ask their permission first.

Give big.  This will get us closer to finding a cure for her, and her, and him, and him, and the almost 13,000 kids that will be diagnosed with cancer this year.  And for the 1 in 5 that will die.  And all of them that will suffer life long side effects from treatment.  It takes all of us.  Not just those of us that have watched our children suffer and die.  It takes you.  It doesn’t only happen to other people’s kids.  Trust me.

When we sat to write our notes to Tuesday this Christmas, Spencer came up with a cool idea.  He read on his box of 64 Crayola crayons with the sharpener, (I know!) that you can print coloring pages from your own photos.  He asked to go through my iPhoto to find pictures of Tuesday.  We found a bunch.  I cried a bunch.  Here are the results:

I loved this project.  Going through photographs is draining.  Transforming them in this way did something magical.  Coloring is good for the soul.

If you don’t have a big box of Crayola Crayons and you’d like a box, leave me a comment and I’ll get one to you.  I liked it that much!  If you’d like to make a donation to whatchagonnado to purchase crayons for kids that have lost a sibling to cancer, go to www.whatchagonnado.org.

Merry Christmas to the person who used our suffering for their financial gain.

She was a 40 something black woman.  She pointed at me, as I read Tuesday on her shirt.  My heart started racing.  I told her I lost my little girl, my Tuesday, and that I’ve never met another.  She grabbed my hand and told me her daughter died 3 days ago.  Maybe you don’t believe in Divine Intervention, but I know that after hearing person after person, when handed a warm plate of food, say “Thank you, Tuesday”, that I got the Christmas present that I needed most.

P.S.  Spence, if you read this some day, know that your mom was so inspired by your tender heart.