Showing posts with label neuroblastoma. Show all posts
Showing posts with label neuroblastoma. Show all posts

Monday, July 14, 2014

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. 


Friday, June 27, 2014

Trying to make a difference

Aside from starting a non profit foundation, I help Mike with our business, CareAline Products. We see every day how our products, that we designed for Saoirse, help kids and adults around the world live more comfortably with PICC and central lines. We never realized that our little idea would be such and important improvement in the lives of all kinds of patients. We also never realized how hard it is to get a medical product - especially a new idea in the world of medicine - off the ground and into the hands of hospitals. While we have made major headway, and overcome a lot of hurdles, there are still many that we have yet to get over, and I'm sure even some that we haven't encountered! 

WE NEED YOUR HELP! 
Here are two ways that you can help us and help lots of patients all at the same time! 

1) Our Indiegogo Campaign!
We are raising funds to help us overcome some of our current road blocks. We have started a campaign on Indiegogo and you can help us by sharing it with your friends and family and on social media like Facebook and Twitter. Also, please watch the video on our page and consider making a contribution, even if it's "just" $1. (if everyone who saw our campaign donated a dollar, we could help so many people!) 

Just share this link :  http://www.igg.me/at/CareAline 

Thank you for sharing and for all your support! 







2) What is up with medical billing?!?
If you know a lot about medical billing and how codes get reimbursed by hospitals and/or home medical supply companies, we need your help! We are trying to navigate the world of medical billing codes to find ones that will allow hospitals, home care facilities, and PATIENTS get reimbursed so that they don't have to pay out of pocket (mostly if hospitals can bill it out to patients' insurance, they will have them in the hospital so the patients don't have to find them on their own!). If you know billing codes, please consider helping us find the right way to get our products covered by insurance. Contact us at info@carealine.com and we can tell you where we stand so far. 

THANK YOU! 



Sunday, June 1, 2014

Four....

Four year olds have dance recitals. Saoirse would have loved being in a dance recital.

Happy Fourth Birthday Saoirse - I hope you are dancing today and every day.




Sunday, May 11, 2014

Mother's Day...

Family

We are a family of four that looks like three,
My mommy, my daddy, my sister and me.
If you look at our portrait, just three you will see,
No sister in sight, just mom dad and me. 

But if you look closer, just past my head,
you will see a little something fluffy and red.
It's not a new blanket, that stays in my bed,
It's Elmo, in place of my sister instead. 

If you ask mom how it feels to be a new mother,
She'll stop, and smile and remember another.
Then tell you her story, which is unlike any other,
For Saoirse made her mom, and I'm the LITTLE brother.


Tuesday, December 31, 2013

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.  

Tuesday, December 3, 2013

Giving Tuesday!

It's Giving Tuesday! In the wake of Black Friday and Cyber Monday, today is a day to give back to the community and remember what this season is truly about - GIVING! 

So choose your favorite charity or cause and donate a little or a lot or just your time. 

The Fitzgerald Cancer Fund is taking the funds collected today and using them to purchase gas gift cards for families with a child in treatment for neuroblastoma. Last year we raised $500, let's see if we can beat that this year! 

Thanks to everyone who has donated so far, and to those who will continue to donate. 



Another way to donate to kids with neuroblastoma is to take part in our 2nd Annual Arts and Artifacts Online Auction. There are some great items that you can purchase for your holiday gifts, and you can help the Fitzgerald Cancer Fund at the same time. Two birds with one stone! 



Thanks Everyone!





Friday, November 22, 2013

Growing Up

I find myself questioning why it is that we are always so eager to see our babies grow up. To do the next thing, to learn the next skill, to gain the next pound. It seems like there is always a milestone waiting in the distance to be achieved, and when it is, there is another. 

As I have wrestled these past few days with trying to get my baby to sleep without me holding him - and desperately trying to break the swaddle - I began to think and wonder why I'm working so hard to push him to that next stage. 

As each day passes he gets heavier and heavier. Holding him all swaddled up and straight is a strain on my back, and he just seems to scream and scream until he finally falls asleep, only to be jarred awake when I put him down. I try so hard to get him to nap so I can get something done - work on event planning, proof read a contract, design a poster, update a website. Running a business and a foundation and being a full time mom is more jobs than one person really can do in 24 hours a day. 

But as I sit here, thinking about night wakings and schedules, errands and meetings, I start to think about how I said I would just put him in the carrier and go about my business. And I think about those days that I did just that and how much happier he had been, and how much better he had slept, and how he barely even fussed. Why am I fighting something that so obviously he needs - just to be with me. 

He just needs me. 

We are so focused on the next - we need to be focused on the now. 

It all brings me back to Saoirse. Now, she was a champion sleeper - through the night at 10 weeks, 12-13 hours a night at 4 months. She took naps when she was supposed to, she slept without being swaddled, she fell asleep on her own. But then there was the hospital - and then coming home from the hospital, and crying in her crib and me not wanting to rush to her side because I wanted her to learn to fall asleep on her own again. And now, all I think of now is how I would give anything to have her crying for me to come snuggle her to sleep, to tell her that everything is ok, and to stroke her head and sing to her. 

And I have the chance to be that for Lochlan. To just hold him, and snuggle him, and stroke his head and sing to him. It's hard to remember that there is no going back to that - there is no rewind when he is 15 and never wants me in his room. That this time when he needs me for everything is so fleeting and so precious, and should be cherished and enjoyed. 

Tomorrow he will be with me. Tomorrow I will just think about the moments, and not about the tomorrows. 


Wednesday, November 6, 2013

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. 



Saturday, October 26, 2013

Halloween....

By the time kids are 3, they have opinions on what they want to be for Halloween. I wonder what Saoirse would have wanted to be. A super hero, a princess, a fire truck, a train? She could have been anything she wanted. 3 is the perfect age to be anything you want. If only she could have been 3.






When you are bald and it's halloween, the best costume is Uncle Fester.

Saturday, October 19, 2013

Missing....

I often find myself missing having two kids. It seems to be getting more and more frequent that I look down at my baby boy playing on the floor and miss that there is not a 3 year old entertaining him. It's been making it hard for me to play with him myself. I shouldn't be the one entertaining him - it should be Saoirse. She should be shaking the toy while I do the dishes. She should be showing him how to hammer the toys, while I do a load of diapers. She should be reading him a book, while I clean the dining room. He's missing it - all of it. 

We went to Russell Orchards to get cider doughnuts and take pictures with pumpkins. (We used to take Saoirse to Smolak's, but we just can't go back yet.) I wanted a picture of Lochlan in a bucket of pumpkins, just like we had done with Saoirse both halloween seasons. I brought her little hat that she had worn in the first one (I spared putting him in her same outfit). I went to put him in a nice big bucket - and promptly go yelled at. Apparently pumpkins roll - and I shouldn't be putting a baby where pumpkins might roll and crush him (like I was going to just leave him there for a while). I wanted to walk up to that man and ask him if he understood that my baby girl could never sit in another bucket of pumpkins. That she could never hold her brother in her lap and take a picture in the pumpkin patch. That the world is full of risk, and sitting in a bucket of pumpkins is the least of my worries for him. But I didn't. He didn't need that from me. I just took Lochlan to a different bucket and did it anyway. 

I will put him in her pea pod costume and parade him down the street on halloween. I will put the photos of him next to the photos of her and see if they look the same - even though she was almost 2 months older at halloween, and he is just huge. I will do the things that I would have done if she was still here with us. But I will do it all while utterly missing her actually being here. And knowing that I only have 18 months of comparisons before there are no more side by sides. And when that day arrives, there will just be one picture going forward. 


Saturday, October 5, 2013

Traveling.....

Lochlan is now two months old. The first month of his life we spent cuddling, and getting used to having a baby in the house again. The second month was spent on a whirl wind tour of the north eastern US - traveling by car to see family, friends, and mostly work. Lochlan, in his first two months, has seen states that I never had, and met more people than most two month olds could even expect to encounter. 

Firstly we took a 'test' trip to Virginia. My friends who I grew up with were all getting together for a little reunion (we all turn 30 starting this year - I'm the 'baby' so I turn 30 next July). All but two of our close knit group could make it, so I was determined to get down there to see everyone. (PS: we are not from VA, but Angela hosted and that's where she lives now.) Stopping in NYC to drop off the dog and break up the driving, we managed to get to Richmond in one piece, with not too much protesting from Lochlan (who hates the car). A whirlwind long weekend, we headed back home where we stayed just 5 days before leaving for our next excursion.

We started driving to Chicago - a 16 to 18 hour drive when we used to drive straight through, but with the baby (and in reality even the last couple trips out), we stop in Erie, PA for the night to break it up. Our wonderful friends, Paul and Katie, host us when we come - which makes a big difference when you are going to be on the road for so long (a kitchen and good friends always make a trip better). During our 7 days in the Chicagoland area, we had more than 7 families and friends to try and see. We managed to "cram" everyone in, and it felt like we spent most of the time in the car going from one place to another - double booking more times than I would like to admit. I am determined not to cram so much into so little time next time we are out there. 

From there we stopped for a meeting with a potential sales rep in Indiana. We stayed the night and headed down to Louisville, KY to the APHON conference. This is a conference we have been looking forward to for over a year. We missed last year's by just a few weeks, and this was the first on our list for ones we had to make in 2013 (and we will be going in 2014 for sure!). This was a great conference. Short, just 2 exhibit days, it is and intense show. We seemed to be quite a popular booth, and found so many nurses wanting more information to bring to their hospitals. As an added bonus, we saw a few of Saoirse's nurses from Children's and they were excited to meet Lochlan. He was a hit of the show, and (when he wasn't sleeping) flirted with all the nurses. 

From there we headed down to Nashville and a meeting with a distributor who is interested in our products. The first day Mike went to the AVA conference as a day guest, and spoke to a few people there. We had considered doing that show, but it was quite expensive, and we weren't sure if it would be worth it. I think the day pass was the right choice for this trip. We wandered around Nashville some, which was quite a trip (we saw someone almost get run over, and then pull a spoiler off a car, and we saw about ten thousand teen and tween girls wandering around before the Taylor Swift concert!). We decided to escape the main strip crazies, and headed up to find an art gallery. We found a great one - and we bought a painting! I love finding art when we travel and this one has a great story - it is from a group of paintings that are done by people in a community program for the disabled. They are mostly in wheelchairs, and have limited use of their hands. They paint either with their mouth, or they give signals to another person to where they want the paint and colors to go on the canvas. When you purchase the paintings, the money goes back to the program so they can continue to create! I love that the gallery is giving back to these people and helping them express themselves through art (this gallery also coordinates a program for local kids to do art after school when they might otherwise be left alone at home or out on the streets). 

After Nashville, we went back to Kentucky, this time to Lexington. We did an inservice at the University of Kentucky Children's hospital. One of the nurse managers had met us at APHON, and she wanted us to present our products to her staff. It was great to be able to go in and present the products and show how much they will be able to help the patients. 

From Kentucky, our goal was to get back to NYC for a few days. It's a long drive, so we decided to crash for the night back in Richmond. My friends were shocked at how big Lochlan had gotten in just 4 weeks. (He's growing like a weed!) Then we went up to NYC and tried to relax a little. Staying with friends always helps - especially when it means we get a home cooked meal after too much eating out. 

The driving took its toll on all of us. By the time we got to NYC, Lochlan was so off in sleeping, it took hours to get him to sleep at night. We managed to get him to nap during the day most of the time, but just short ones (which is a current trend even at home now because of all the "rocking" in the car). We were sick of the cramped quarters too, and were ready to get home. 

Once we got home, we weren't here for long. We had to make two trips right away - one to Vermont to meet a potential distributor, and one to Pittsburgh to do a children's hospital presentation. So more driving and more cramped quarters and interrupted sleeping. But now, hopefully (knock on all kinds of wood!) we will be home for a while and can just be settled (and stretched out). 

Things are moving like crazy - I have 3 events I'm trying to plan for the foundation, and things keep getting pushed off some, but we are making some headway. Now all I need is to find a few more board members and a grant writer, and maybe a free personal assistant (never hurts to wish). 





"Things I do now...."
teething (yup, for real - yes he's really young!)
sitting up in the corner of the couch
chewing on my hands when I can get them
grabbing toys
watching mommy do laundry
babbling stories


Wednesday, June 26, 2013

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. 



Monday, June 17, 2013

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. 




Thursday, May 30, 2013

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!

Saturday, May 11, 2013

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. 



Wednesday, February 13, 2013

Little kicks....

Finally starting to feel the baby move. This is the strangest part of pregnancy for me. It's when it sort of gets real, but no one else can be part of it. Also, its hard to know what's baby and what's gas sometimes. When I went to my 16 week appointment on Monday, I couldn't really tell if it was the baby yet. Strangely, that afternoon, I really started feeling the baby wiggling. I kind of needed it, as I've still been having a tough time connecting with being pregnant. There are so many mixed emotions with this pregnancy, and it's been hard to get excited. 

When we got pregnant with Saoirse, we were so excited. Reading all the books, doing all the preparations, getting the nursery ready, planning our new family... there was so much to do, and everything was new and exciting. This time, there is less to do to prepare.  I don't need to read as many books, the nursery is already together, and Saoirse's not here to share it all with. I think as we go along, and the baby gets bigger and pushier, the excitement will build some, and I know I will love the baby when it arrives. I guess the good thing about pregnancy lasting 9 months is that we have time to work through all our emotions. 


Thursday, January 3, 2013

What to Expect.... the Unexpected

I was asked to write a guest post for the Word of Mom page on the What to Expect website! I would love it if you would all read and share it with your friends. Take a look by clicking HERE. Let me know what you think! I hope to write more for them this year, and share Saoirse and Neuroblastoma with the world! 

Thanks Everyone! 


Monday, December 24, 2012

Twas the Night Before Christmas



Twas the night before Christmas, and all through the halls
The nurses were stirring, decking the walls.
The stockings were hung on the IV poles with care
In hopes that St. Nicholas would remember they're there.

The children were nestled in hospital beds
while visions of home danced in their heads
And mamma in her slippers, and papa in his sweats
Try to settle down and get much needed rest. 

When down the hall there arose such a clatter
The nurses went running to see what was the matter.
Away to the door a mom runs with a whoosh
With fear in her heart that a child is worse.

The pump lights are glowing, and the monitors beep
The nurses take care to let little ones sleep.
Parents lay restless, and wish they could be
at home with their kids who were all cancer free.

Santas speak not a word, but go straight to their work
And fill up the stockings, before returning to work.
With a twinge in their heart, and a smile on their face
They are sure to leave everything in the right place.

The twinkling lights make the little ones smile
And forget all their troubles for just a small while.
As parents find joy and hold back their tears
They try not to show the kids all their fears.

Their eyes - how they twinkle, their dimples how merry.
Their cheeks are like roses, noses like cherries.
They see all the presents tied up with a bow
And the white out the window of fresh fallen snow.

Each special child with hope in their hearts
Dreams of the day when the pain will depart.
But for one special day, none of that is in sight
And all can be merry on this Christmas Night!

Thursday, December 13, 2012

One Year

I can't believe it's been one whole year since I've held Saoirse. There are so many times I feel like it was just yesterday, and times when I wonder if she was just a dream. I miss her every single day, and I always wish she was here with us. She would have made life so much happier. So much better. So much friendlier. So much laughier. I just don't know why she was taken. She was so good and kind and perfect. She could have done so much with her life. Helped so many people. Made so many friends. I wish I could go back and fix everything. I just wish she could come home.


We decorated her tree today. Put lights and a garland up for her. I think she'll like it. 



Thursday, December 6, 2012

Calling All ........... well just ALL!


The first annual Arts and Artifacts Auction is here! It started on Tuesday (sorry, I'm late with this post on here), and goes through Saturday December 8th (until 11:45pm eastern time). This is a great opportunity to give back while doing some holiday shopping this year. There is something for everyone, so take a look, set up your account, and START BIDDING! And remember - we are a 501c3 public charity, so all of your donations will be tax deductible! All items were generously donated to us, so 100% of the proceeds will be going toward our Parent Grant Program, which financially helps families with a child battling Neuroblastoma. Our goal is to raise $5000 - which would help so many families in 2013! Let's make this goal a reality! Share with your friends, and start bidding!

Here are the links to the info on our website, as well as the direct link to the online auction! Happy Bidding!