First day of school...

Life has gotten quite busy. Traveling, working, raising a 2 year old, summer, weddings and general life. But sometimes life sneaks up on you when you least expect it. 

Today, most of the kids in the area started school. That means, All of Saoirse's friends started kindergarten. While this is heartbreaking in so many ways to me, I find myself wondering more about what it would have been like to have her here. 

What would she look like?
Would she be going to school with her friends or would we have home schooled her?
Would she have needed to have hearing aids to hear the teacher?
Would she make friends?
Would she have picked out a Frozen backpack?


There are so many questions. Questions that will never have answers. Questions that will never need answers. 

I hope that just maybe, some of the friends that knew her as a baby will remember her as they all make new friends at school. 

Thirty...

On July 11th, I turned thirty. Yup, the big 3-0. Of my close group of friends I'm the last one to hit this big milestone. It kind of snuck up on me. Since our lives became so chaotic with diagnoses, treatments, grief, birth and relapse, birthdays seem to slip down the totem poll of priorities. Plus, Lochlan's first birthday is coming up and that seems way more interesting than my 30th. 

But, being that I have amazing friends whom I've known since elementary and middle school, they took me out and we had a blast! We went bowling - an activity where the worse you are, the more fun you have as it is increasingly evident that you are never going to become a professional bowler, or even manage to get a score past the double digits. We laughed 'til we cried, and stayed out way past my bedtime, and never once questioned each other about where we were "headed" in life. 

Birthdays seem to give you a realization that you are actually older than you were the day before - even if you don't feel like it. I realized that in just 30 years I have experienced things that many people don't see until they are 60 or 70, if at all, in their life. Sure, I have a lot of friends my age who have gotten married, bought a house and had a couple kids. That's pretty par for the course. But it's this damn cancer thing that's pushed me beyond the typical and forced me to face the reality of life and how short it is before most people my age even think about death as a tangible possibility. 

While I'm very sure that the world is going to be stuck with me for quite some time yet (let's face it - I'm too stubborn to let cancer have it's way), loosing a child is something that I'm sure has shaved a few years off the endpoint of my life. The basic stress that it puts on someone mentally just can't be measured. (Well, I'm sure some neuroscientist out there has some theory...) But I think even more than that, it is alienating. Not to everyone, and not completely, but you become an enigma in most circumstances that leaves you wanting for the "normal" encounters that you used to have with the rest of the world. (Enter the AWESOME world of Camp Sunshine! where I'm pretty sure we all wish we could live full time as a commune of like minded "crazies.") Life's little "problems" become petty, and tolerance for ignorance, stupidity, and bullshit becomes pretty much nil. You suddenly become "enlightened" to the fact that the phrase "life sucks, and then you die" is pretty much spot on, and you might as well do things that mater and leave the rest alone. 

So.... At the ripe old age of 30, I have done some things I had always wanted to, some that I never wanted to, and some that I never dreamed I'd do. I've faced challenges while laughing, cried tears while escaping, and managed to get out of bed every day. And while life is far from perfect, and - let's face it - often far from fair, if I'm going to be kicking around for another 30+ years, I better do some things that are pretty amazing while I'm here. 

The holiday blur, and a new year

This year's holiday season has been a bit of a blur. Between time spent with Lochlan, and event planning, and distribution contracts, and family get togethers, I feel as if I've been sinking into an ever deeper hole of avoidance and anger. 

It was all I could to muster up enough energy to shop for gifts. I just didn't feel like being "merry and bright" and the stores always seem to be filled with frustrated, hurried shoppers hoping to get everything done before dinner. Everything seemed forced somehow this year. Things seemed to pile up and get left for last minute. Nothing seemed to fall into place easily, if at all. It all was a blur and a chaos that just seemed to happen. 

The approach of the new year hasn't been any better. I remember last year - we were in Chicago for new years eve. Mike's friend owns a restaurant which was hosting a party, so we decided to go out and stay with friends for a while so we could go. I remember we got in the car to drive from the suburbs into the city - as we drove, I started to cry. I couldn't bear the thought of entering into a new year without Saoirse. Every change of the year means ever more time since I saw her smile, heard her laugh, held her close. 

This year I kind of forgot it was a holiday. I've been going about business as usual today. Planned on going to bed early, and hopefully having the baby sleep soundly. Then I realized that the rest of the world was staying up to party and welcome a new year. I kind of wanted to just stop time for a bit. 2014 seems to have so many expectations coming with it. I don't know if it's the events coming up for the foundation, or the beginning of distribution for the products - but I feel as if I'm never going to meet the expectations I have for myself this year, let alone the ones of others. 

I feel stalled. A new year should bring new beginnings, clean slates, new hopes and dreams. This year for me, it brings fear of failure, feeling overwhelmed, and another year without Saoirse. I wish I could stop time and take a breath and just be - with no expectations and no agenda. Just Be. But somehow the world doesn't stop turning, and time does't stop ticking. And we all must keep moving.  

Two Years....

Two years ago my world stopped right in front of my eyes - you left us. I let out a scream and gasped for air. My breath tried to go with you.

Somehow the world around us keeps turning. It should have stopped turning with your last breath. 

I still wonder how it keeps going around. Maybe you are spinning it. 

Shopping for Saoirse

Last week, my friend Vicky called me up. She left me a message saying she wanted to talk to me about something interesting that happened at work that day. I would have never guessed what was coming next. 

Where Vicky works, they have giving trees - trees that have tags with the names of children who are in need of some holiday cheer, and a note about what they would like for a gift. Vicky was putting some new tags on a tree and she stopped to read the names. There was on that grabbed her attention - a 2 year old girl named Saoirse. She stopped, took a moment, and took the tag to get Saoirse a gift herself. She called me because she wanted to know if I would like to go with her to pick out the gift. I was so glad that she called me. 

While for some grieving parents, this would be too hard, I was really excited. It's sort of a little way I could experience a Christmas for Saoirse. We picked out some nice things for her, and I made sure to get a little Elmo doll in there. I felt like it was my Saoirse's way of reminding me that she is here, and that this time of year is all about giving. 

So today, I picked up my own giving tree tag. This one will go to a little girl at the Jimmy Fund - she wants an arts and craft set - I will be sure to pick out something very fun (and of course, throw a little Elmo in there for good measure). Remember to think of those kids who don't get to be home for Christmas and the holidays, and if you see a giving tree, take a moment to pick out a tag and add one more small gift to your list. It only takes a moment, but the memory for that child will last a lifetime. 

Today

Today has proven to be a trying day. Emotions off the hook. Frustrations high. Anger manifesting. Tears flowing. Mind reeling. No peace at all. This time of year is trying as it is, but this year seems to be taking its toll earlier and more intensely than I remember from last year. Two days of bereavement events probably didn't make it easier. I feel like life has built up this wall of busyness; of things that have to be done; of not having time to deal with feelings and clutter and everyday life; of sleep deprivation. That wall is like a tower of wooden blocks - teetering every so precariously on one another, just waiting for a heavy step, a light wind, a shift in the rug, to topple it over into a mess on the floor. Anticipating when the wall will fall is impossible. The anticipation creates strain of its own. Maybe I need to rethink what needs my focus the most. Too bad the world doesn't seem to want to back me up on that. 

Born Grieving....

While walking through the Dallas airport last November, I saw a big poster that made me think. It was a poster advertising grief camp for kids who have lost a family member. Then it hit me. My children are going to be born grieving. Grieving an older sister whom they will never meet, they will never get to hug, they will never get to play with, they will never get to learn from. Saoirse's siblings will never have one day without grief. Not one day of innocent childhood joy, free from cares, and free from fear. What kind of childhood is that? A childhood of sadness. Of missing an older sister from day one. Of grief counseling and bereavement camps. Of "yes, I have a sister, but I never met her." Of an imaginary friend who they didn't make up. 

As I sit feeling a growing baby inside me, I wonder what kind of a person he will become. How Saoirse and her short life will shape his. How he will feel being born to grieving parents. How I, as a grieving mom, will be able to give him all he needs of me. I wonder what his childhood will be like. If he will resent being compared to Saoirse's "perfection" as a baby and toddler. If he will grow tired of hearing the same few stories about her life as he gets older. I want him to love his big sister, not resent her and her influence on our family's emotions. 

I want him to look up to Saoirse and her strength, and strive to live each day as it comes and enjoy every moment. But I know he will have to endure dealing with coming to terms with death and pediatric cancer earlier than most people. He will have to learn early that no one is "safe," and that nothing is guaranteed. He will be forced to learn that life is short and precious, and that not only old people die. How will this shape his life? Will it make him want to live each day to it's fullest, or will he be a crazy daredevil who risks life and limb because he knows "life is short"? 

I want Saoirse's short life to be a positive influence on her siblings' lives and characters. I want nothing more than for them to feel empowered to do something positive with their lives in her memory. I want them to feel that we, as their parents, are able to give them as much love as they deserve, and not hold them to impossible standards of achievement and perfection. We will have to work on this together; figuring it out as we go, learning from our mistakes. Maybe bereavement camps aren't such a bad idea after all. 

A little bit of Sunshine

This past weekend we attended bereavement week at Camp Sunshine on Sebago Lake in Maine. This was our first time attending camp there, and I wasn't sure what to expect. It was hard to go - I wasn't sure if it was going to be all sadness and talking about feelings and sitting in conversations about death and dying and suffering. Nothing is farther from the truth!

When we arrived, we were greeted by smiling faces, giant bears, and tons of energy. I wasn't sure what to make of it. I must have looked stunned and terrified at the same time. We went in to register and they gave us our info - we were the only family this weekend that had never been to camp before. Immediately I felt alone - and scared. Everyone would know each other, and we would be alone. that was my fear. We got checked in, found our room, got a ton of help moving all our stuff in (we had water, snacks, tons of pillows, sheets and towels - that's how it works - it's kind of like camping; you bring everything with you). Once we got settled, we headed up to dinner. The first night we had assigned seating and were put with a family that we didn't know (there were two families there that we knew locally - not from treatment, but from after). A wonderfully sweet volunteer sat with us. She told us about herself and about camp. It was good to have someone to start the conversation. After, there was a brief orientation, and some singing, we were off to try and settle in for the night - still not sure what the next day would bring. 

Friday was a new day for me. I was ready to try and make the best of everything and meet some more people. We had a short orientation, and the kids went off to their day camp activities. Then the adults had activities - games; crazy, silly, goofy games. We were broken up - no spouses together - and set into groups of strangers. But here was the funny part - these strangers didn't think I was crazy; they didn't think I was shy; they didn't look at me with fear in their eyes. We were all in the same boat - we had all watched as our children suffered and then died horrible deaths - we were all the same - there, we were all normal; no longer "different." 

And that's when it happened - I truly, completely relaxed. I didn't have to hide anything; I couldn't shock them with my stories, and they wouldn't run and hide in fear of it happening to them, because it already had. A weight lifted off my shoulders. I could be free and open - I could be me. 

Each day we had a parent group session, where we all shared our stories, an talked about our fears, concerns, questions, and sadness. But it wasn't all sad - it was support. We got to hear what others were doing, how others were doing, and that we weren't crazy. And we made so many new friends - friends that we will never ask us if we are "over it," or if we think she's in a "better place." Friends that get it and that will always get it. 

We will definitely be going back. 

oh yah... karaoke!

Summer....

The summer time is proving to be rough emotionally. We spent last summer so hopeful that Saoirse was going to be well, and she seemed to be heading that way. We spent all our time with her - doing fun things and finding things to do that would make her forget she was sick. We made sure she enjoyed every day. 
Now, everything we do is a reminder of last summer and what we did with Saoirse. It's a reminder of all the things we did with her, and all the things she got to experience. But it's also a reminder of all the things she never got to experience. When we do find something new to experience, we are saddened that Saoirse didn't get to do it with us. 
This is the double edged sward of our summer this year. A time when we feel like we should be enjoying ourselves, but instead we are forcing ourselves to try and be "normal." But, thanks to good friends and family, we have been coerced into getting out and enjoying the season.