5 years later

I was at Target last night picking up a card to give to Jake for our anniversary and nothing seemed appropriate. I could have gone funny and picked the one that talked about him remote-hogging and me cover-stealing; I could have gone serious with the 'yin to my yang' mushiness; I could have picked a million different words to tell him on this day, but none of them fit. So I went simple and picked one with two octopi holding hands with the inside saying I still love to hold his hand. He thought it was cute, but it did make us wonder if there will ever be a card that fits us.

Where is the card that says 'Thanks for dragging me out of bed when all I wanted to do for the last year was disappear into the mattress'? Or the card that says 'I can't believe I just yelled at you about butter, but please know I'm not mad at you and I'm not mad at the butter, I just don't know how to express myself'? Maybe a card that says 'I am in a mental fog, but you make a great fog horn'?

The truth is there isn't a card for us and I hope there is never a market for cards for people like us. Five years ago when we said our vows, I think we were both hoping to be just another ordinary couple that got to exchange ordinary cards on ordinary anniversaries; we never thought we'd be here. Some days we still feel numb about where we are in our lives. We still struggle with how we got here and how we'll make it to tomorrow. I guess the best I can tell him is that I don't know how we'll make it, but I still love holding hands with him and I know that makes the journey a lot easier!

Exploitation

On this blog I generally try to stay fairly opinion-neutral, but I'm just going to say what I'm feeling tonight.

Kate Gosselin makes me feel dirty. I feel like she exploits her kids and that makes me feel dirty. It makes me wonder if others think that by writing this blog I am exploiting my children; I am exposing their lives to a world they didn't ask to be exposed to. I know I shouldn't worry about what people think, but I do...I'm human.

I saw her on the Today Show this morning reading an excerpt from her book. She was reading a letter to one of her children and I immediately thought of the letters I have written here, to my girls. I guess the difference is that I can't talk to my girls and I can't tell them how much I love them and miss them in person, so I have to get it out somewhere. She is so lucky to be able to tuck her kids in at night and remind them that she loves them. I don't know if she is embracing those moments in real life, but I really hope so. I hope all the moms and dads in this world are lucky enough to soak in those moments.

A few months ago, I had thought about turning my blog posts into a book. Not for fame or fortune, but to help others that have been on the devastating end of an SMA diagnosis; for others that have dealt with paralyzing grief; for me and my own peace of mind. I'm beginning to rethink that idea of a book. I just don't know if I could handle the guilt of possibly exploiting my sweet girlies.

For now I'll just keep talking to them in my own ways...when I make a wish on an eyelash or when I stop by their trees or when I write them a little note here. I'm not doing it to exploit them, I'm doing it because I don't know how live my life without talking to them and reminding them that I love them.

Newspapers

When Jake was little, his Grandma started a scrapbook for him. It was filled with all of his school pictures, ribbons and newspaper clippings. I can go through that scrapbook and tell you every time he made the honor roll, every score or placing he had in track and tennis, and every time he had a perfect attendance semester. It is a scrapbook that reflects who he is, where he started and how far he has come. The newspaper clippings have since yellowed, but the words are a forever reminder of how he has become the person he is. I wish I had newspaper clippings for the girls.

My grandpa's obituary was in the newspaper yesterday and at the bottom it read that he was preceded in death by his great-granddaughters, Sydney and Carynne. It made me so sad to know that the only time my girls' names will be in the paper is when they're in the obituary section. I don't get to record track times and dance recitals and honor rolls. I get to be reminded that they preceded our entire families in death. I get to be reminded that all of my hopes and dreams for them were cut so very short.

Our therapist has been talking to us a lot about re-traumatizing ourselves by being in emotionally difficult situations. He suggested we not go to the funeral tomorrow. But, the re-traumatizing events are not nearly as difficult as the reminders that sneak up on me and take over when I least expect them. I didn't know that reading their names in that obituary would be as difficult as it was. I didn't know that I would sit at my desk and silently cry. I didn't know how fresh my pain would be again.

A confession and a find

I have a horrible confession to make...after the girls passed away I took every medical record, every bill, every piece of paper relating to the last month of their lives and threw it in a box. It was so disorganized and clutter that I just left everything there, trying not to directly look at it, until one day last week. It was time to do taxes and I needed all of those medical bills, so I went through everything. Some finds were good, some were bad.

Like the piece of paper that I had written on when Dr. W. called to say they did find an abnormality on Carynne's 5th chromosome. He didn't go over any of the information or a diagnosis on the phone, he just told me that they had found something abnormal, and I wrote everything he said down so that I could start looking into it. A few days later we got the diagnosis. That piece of paper was hard to come across.

I also came across the bill from the funeral home. If the government had any compassion, they would allow you to write that off your taxes (note: I am not bashing the government, just saying I wish it could be written off). Oh well.

Mixed in this box of depression were a few nuggets of light. I found an envelope that had inadvertently landed in the box. It was 5 1/2 months older than the rest of the contents. It was an envelope I had used to track contractions one night while I was pregnant. Finding that envelope made me smile. It wasn't the night I went into labor, but I still remember what it was from. We had a meeting with our running club at the Aristocrat. I had been having contractions the whole night so I pulled out the first thing in my purse (an old envelope) and started tracking at the restaurant. They were about 5-7 minutes apart, but I wasn't alarmed because I was used to them. In fact, I don't believe I went into labor for at least another week. Of course, try convincing a jumpy husband and a bunch of beer drinkers that there's no cause for concern...reminds me that we have such sweet friends.

Another good find in this box was a receipt from the Julian Center. The Julian Center is the local domestic abuse shelter. About a month after the girls passed away, we took all of their formula and diapers down there to donate. The receipt confirmed donation of over $500 worth of baby stuff. We had A LOT of formula and diapers. Finding that reminded me that we have to continue to try and be good people. Try and live better lives for our girls.

Sydster

Dear Sydney,

I was sitting down tonight to write you and I asked Daddy if he had anything he wanted to tell you. He wanted to tell you that he says hi, he loves you and he misses you.

Today was hard on me and your daddy. We were both pretty grumpy this evening so we went down to visit your trees. Normally visiting your trees really cheers us up and makes us happy, but tonight it was so cold and dark and we were so mad at the world that visiting your trees didn't bring us to a happy place. I just stood there, in the dark, staring up into the sky being mad. I just don't understand why this world works the way it does. I don't understand why we have to go visit your trees instead of holding you.

As we were heading home I found a joke in reserves. Apparently, it was pretty funny because Daddy let out a pretty good chuckle. I told him that if I had to guess, I would bet that your laugh matches your daddy's. Really joyful and full of spirit.

I wish I could hear that toddler laugh of yours instead of guessing what it would sound like. I wish I knew whether or not you had the same sense of humor as us. It makes me very sad to know that I only know the first 5 1/2 months of you. I wish that I had had more time with you and your sister. I wish that I could tell you, in person, everyday, how very much I love you.

Love,

Mommy

Lovely Carynne

Dear Carynne,

I've tried to write this post to you a few times today, and each time I've had to stop. I'm so scared of this anniversary. I don't know what to expect; I don't know how I will feel. Today my head just kept playing our last moments over and over and I wish instead that I would replay good moments. Happy moments.

This last year has been horrible without you. Everyday I miss you more and more. Some days it physically hurts that you aren't in my arms. Some days I want to scream in anger that you aren't with us anymore. Some days I just cry until I am out of tears.

I wish I could better understand why this happened to you and your sister; why this happened to our family. I wish I knew that you were ok. I wish you knew how much I love you. I wish you were here so that I could tell you that in person. It's not fair that I can't tell you. It's not fair that I have to write you a letter to tell you instead of showing you. It's just not fair that you're not here. You belong here, with me and daddy and Sydney.

There are nights that I sit crying, begging you to come back to me. Why can't you be with us? Why can't we hear your beautiful laugh? Why can't we see your sweet smile? Why do we have to resort to pictures and videos to be with you? I wish I had more answers.

Today, on this year anniversary of your death, I will try to remember good memories. I won't focus on my sadness. I will love you with everything that I have.

Love,

Mommy

Riley ice-skate-a-thon

Hello all it's Brook's friend Jess, I took a few pics of the group and Brook wanted me to share.

Brook and Jake. Brook took home my award for best balance.







Brook, Jake, and Sean. Jake and Sean tied for my award for best effort.







Jake, Sean, Brook, and I. We had lots of fun and it was awesome to support Riley.



Sonya and Brook. Blurry image is due to the photographer unstable on her skates ;)



Sonya and I. Sonya took home my award for best rookie skater. I took home my award for most falls! Jake received an honorable mention for multiple falls.