The invisible line....

Today we passed over the invisible line. 

Saoirse was alive for one year, six months and 13 days - 560 days. 
Yesterday was one year, six months and 13 days since she died - 560 days.

Today is day 561 - day 1 in the ever increasing number of days that she has been gone longer than she was here. 

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. 

Birthday Wishes

Happy birthday my little one. I wish you were here running around and playing and opening gifts on your special day. You only got to have one. That's just not enough. 

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!

Going Bald for the Kids!

So..... I'm a little late posting this here. However - it is no less important, and event more important, now.

I'M GOING BALD FOR KIDS WITH CANCER!

I'm participating in One Mission's Kid's Cancer Buzz Off at Gillet Stadium on June 9th! One thing I love about One Mission is their support of the child life services at Boston Children's Hospital. Saoirse spent countless hours in the playroom on 6 North, playing with toys, trains, the keyboard, painting, coloring and reading. The staff and volunteers are so important to keeping spirits up during what is otherwise a difficult, painful, and frankly boring time sitting in a hospital room.

Another thing I love about shaving my head? When I'm 9 months pregnant in the middle of the summer, being bald will be a great way to stay cool!

So help me out by donating to my fundraising page, and help the kids be able to escape for a short time while they endure devastating things to try and save their lives!

Click THIS link:
Kezia's Buzz Off Fundraising Page

PS: if I can meet my goal to raise $1500 by May 24th, two things will happen -

1) I will get to meet Rob Gronkowski and have him sign my shirt :)

2) I'll dye my hair purple - why not?!

Just to entice you, here's a photo of my hair BEFORE :)

Mother's Day...

Mother's Day.....

It's a day set aside each year to show your appreciation to your mom and celebrate those who are mothers. I remember being a kid and going to crafts in the park, picking out a gift for my mum, and wrapping it up knowing she would love what I found for her. I'm pretty sure that for the most part they were all things she didn't need and just took up space, but she always kept them (the only one I remember her using was the pocket tissue holder that lingered in her purse until I was at least in high school). I think to her, it was the fact that we went out and chose it on our own that made her smile. My poor mother has gotten her fair share of strange, non-usefull gifts from me and my sister over the years, and unfortunately she is a packrat, so I'm pretty sure they are all still somewhere in her house. 

For those of us who have lost our children, mother's day is usually a dreaded day as it approaches. It's a difficult concept to grasp - do we celebrate our motherhood, or do we reject the made up holiday and steer clear of the cards and restaurant carnations? I know people on both sides, and I can't fault either one. Emotions are nasty bitches sometimes, and no one should be told how to feel. 

So far I haven't had any luck with mother's day. My first pregnant mother's day, I was due just 3 weeks later, and I was tired, cranky, uncomfortable, bloated and pissy. Pretty standard for 8 and a half months pregnant. My second mother's day was spent in children's hospital. Saoirse had been diagnosed just 3 days prior, and we were doing her first round of chemo. I spent the whole day with her, holding and cuddling her, playing with her and focusing on making her healthy again. It may not have been my ideal thought of what mother's day should be, but in reality, it was probably one of the best mother's days I'll have. I got to focus just on Saoirse - the little girl that made me a mum - and nothing was expected of me other than that. Last year, she was gone. I didn't feel like a mum. I felt like a failure. I had been unable to save her; unable to make her better; unable to give her the childhood she so deserved. Cancer had stolen my baby, stolen my motherhood, stolen my mother's day. I felt defeated. 

This year I feel a little different. Of course, I still hate cancer for what it did to my family - for tearing my Saoirse away from me and leaving a hole in my heart and my life. But I am still a mum. I was a mum starting the day I knew Saoirse was growing inside me. I was stuck with the title, and there was nothing I could do to loose it. From that moment on, she always came first, and that hasn't changed at all today. She is my first thought in the morning, and my last at night. She is my focus each day, and she keeps me running. 

And now there's a feisty little man awaiting his summer birthday. (Luckily, I'm not 8 1/2 months pregnant, only 6 1/2 so I'm not miserable (yet)). His acrobatics remind me that he's growing strong, and that he will soon take over my time and energy. He will be my living child; the one that others "see" as making me a mum; my outward/public sign of motherhood. And he will be all those things, but Saoirse will still be the one who made me a mother. For it was she that changed my life and transformed me from a woman to a mum - a lifetime commitment, a lifetime dedication, a lifetime joy. 

Tour of Doctors....

It seems like we've spent the last week in and out of every doctor's office on the Beverly Hospital campus. All were routine appointments, it just seems like we could have collected them all on one day, rather than over the course of a whole week. Would have made for much less driving. 

Appointment #1: our full survey ultrasound of baby #2! At 19 weeks, they did my full survey ultrasound. I warned the tech when we got there that she would have to chase this baby around to get all the measurements she needed, and she sure did. This little one is quite the acrobat! She followed the baby around and measured everything. Everything looked good, and we got to see lots of pictures. Oh, and they told us the baby's gender........

IT'S A BOY!

Now all we have to do is figure out what to do with a boy ;) and pick out some boy's names. 

Appointment #2: Mike's consult for some swollen lymph nodes. Mike has had some swollen lymph nodes in his neck. He has had a bunch of tests done, and everything has been coming back normal. Naturally we are a little sensitive about swollen lymph nodes, so we went to see a specialist to make sure that there was nothing that would trigger concern. The appointment went great. The doctor was really great at listening to our concerns, and Mike's family history. The exam didn't show anything concerning, and most likely they are just from congestion and a mild virus. We did leave with some homework - Mike has to see if he can get some genetic testing done with his family to see if there are any links to the BRCA gene. 

Appointment #3: my quarterly oncology appointment. This one was totally uneventful. Went in, labs were normal, I was feeling good, and nothing looked concerning. The great part is, since it's now been two years since my diagnosis and start of treatment, I only have to go back every 6 months! The next time I go in, I'll have had the baby already! It's nice to know that things are going the right way. 

Appointment #4: Today was my 20 week appointment at the birth center with the midwife. I love going to these because we get to hear the baby's heartbeat. It's so fun to hear! I have finally been able to put on some weight! Which just means that I've gotten my appetite back. The baby sounds great, but scooted away as soon as she put the doppler on my belly. We found him again though, and I could feel him push back on the sensor. He wanted to be left alone apparently. I can't believe it's already half way through! 

I've been nesting like crazy. Organized the whole kitchen. Cleaned out the laundry room and that will be organized next. I've been deciding what to do in the baby's room, and we are going to be getting a mini crib to replace the full size crib so the furniture can move a little - giving some more room. We are going to try doing EC (elimination communication) with this baby, so I've been researching that, and figuring out where to get a tiny potty. I've been knitting up this baby's blanket, and really loving the pattern! I'm using some great yarn from my friend's shop - AnotherCraftyGirl - on Etsy. I love her Elmo colorway, and she is the one who does the Saoirse yarn for us. I can't wait to see it all done. 

That's all for now - I have to pee....