I haven't written in a very long time. I am ashamed.
But today has been different somehow. Today, missing the girls hit me like a ton of bricks. It is hard to describe, but all of a sudden, I just felt so lost. I felt so broken. Usually I can pinpoint what sets me off and brings these feelings to me, but today I don't know what has done it. The constant ache that sits in the back of my heart for them somehow jumped to the front and shoved every other thought and feeling out of me. It is consuming me and I just don't know where to go with it.
It's strange; I have gone through over a year of therapy trying to relearn how to live my life and yet these moments still stop me in my tracks. And while it hurts so so bad, there is almost a comfort inside of me too. I'm comforted to know that I'm not forgetting them and that I still miss them and I still hurt for them. But most of all, I still love them.
Thursday, July 8, 2010
Sunday, May 16, 2010
Words
Jake's grandpa died almost two weeks ago. Richard was a good man. A very good man. He was the quintessential Hoosier. Born and raised on the farm, high school basketball star, married the homecoming queen, and lived a quiet, peaceful, giving life. He was everything the obituary said, and more, but for some reason, those black letters on the paper hurt me again. He was preceded in death by his great-granddaughters, Sydney and Carynne.
The service at his funeral was given by the same man that did the girls' funeral. As he gave his closing remarks, he said he could just see Richard now, sitting somewhere rocking two sweet baby girls. It was so very nice of him to remember our girls during his remarks. His simple words meant a lot to me, and for that I am thankful
Sunday, May 9, 2010
SMA 5K in Cincinnati
This is a bit late, but I still wanted to share that Team Sweet Girlies was very well represented at the FSMA 5K in Cincinnati last Saturday! We raised $525.00 for Families of SMA and had 28 walkers for Sydney & Carynne. The rain didn't dampen our spirits and even though we had to walk inside the Cintas Center, we still had a blast! Our team even started an impromptu dance party that provided tons of entertainment ;) I've got a few pictures from the day, including lots of goofy dancing, but I'll save everybody the red faces and just post a quick group shot. This doesn't include everybody that walked, but all of the Moms of Multiples and their double strollers were wandering around at this point.
Back Row: Jenny, Sonya, Sean, Greg, Jake & Brian. Front Row: Jess, Nate, Amy & Karen.
Friday, April 23, 2010
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!
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!
Tuesday, April 13, 2010
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.
Friday, March 19, 2010
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.
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.
Wednesday, March 10, 2010
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.
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.
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