22 July 2011
Just a quick update folks! This site is going to be completely revamped in a few weeks, and I wanted everyone to know about it. Mike, Mackenzie and I are currently living in a hotel, getting ready to fly out to our new home in Okinawa, Japan in four days.
Holy cow, eh? Once we get there and get settled in, I plan to create a new home page for skeleigh.com where I can write about our Japanese Adventure! I hope that you will all check back. It's going to be interesting!
20 April 2011
More than four months with no post. That's probably a record. Will it be the last record I set? I doubt it. But today is a day that calls for an update here.
Five years ago today our world was turned upside down by these words: "Mrs. Barry, your son has a brain tumor."
Five years. Five full, and yet oh so empty, years. Full because we had nearly 2.5 of them with Keeghan, watching him fight with more courage than I could ever have, always smiling that amazing smile. Empty because the last 2.5+ have been spent missing him, trying to find that elusive "new normal" that I talked about just after he died. There is no "new" normal. There is no normal at all. But life does continue on, always with thoughts of Keeghan. He's never far from our minds, and his presence still fills our hearts every moment.
Someone emailed me this poem yesterday. It fits how we live our lives better than anything else I've read since Keeghan left:
Death Is Nothing At All
Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.
Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.
Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?
I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.
All is well.
by Henry Scott Holland
As for what we have been up to . . . well, Mike is still deployed. He should be home within the next six weeks. He left here in November as a Major in the U.S. Air Force and will return as a Lt. Colonel. As Maxx puts it, he left as Major Dork and will return as Col. Mustard!
Just a few weeks after he returns, we will be moving from Northern California to Okinawa, Japan. We received news of this move in January, so it's been a whirlwind of craziness for the past three months with me trying to figure out everything that has to be done before leave. We are so excited about this move though. It has been nice being in California near family, and I think when we moved here we thought this would be it for us. But Japan will be such an adventure! If there is one thing that hasn't changed about we members of the Fantastic Four, it is that we are nomads at heart. I don't know if we'll ever be able to settle in one place. Maxx says that Keeghan sees everything we do, so this will be another chance to show him the world, right?
One thing California has taught us is that we are so NOT cut out for suburban life! We are heading into this Japan assignment with the idea that it will be Mike's last in the Air Force, but of course we all know nothing is set in stone. We may fall in love with Japan and decide to retire and stay there (or Korea, Thailand, or some other cool place . . .). Then again, the Air Force might offer Mike an assignment in three years that we just can't refuse. We'll see, right? But I can tell you I will never (willingly) live in Suburban America like we do now again. Give me a remote place in the country, or a condo in Downtown Big City, but not this tract home living. Ugh!
Maxx will be going into her senior year in high school as we arrive in Japan. The plan for right now is that she will finish school there, and then take a year off so that we can travel some. She lost a lot of her childhood thanks to cancer. We want her to have one more year to just be a kid still before she starts college. Since we will be in Japan for at least three years, she will start college courses there. After that, who knows?
In case you haven't noticed, we have adopted a very laid back attitude when it comes to making long-term plans. That's another thing that cancer taught us. We've tried making plans before, only to have them not just dashed, but stomped on, ground up, rolled in crap and then thrown out the window. Yeah . . . I'll take living day by day for a while.
As for me, I am still involved with 46 Mommas Shave for the Brave, having just shaved my head for the second time in seven months on April 9th (see video HERE). This time Maxx had the honor of shaving my head for me! In just nineteen days I managed to raise $1,600 for St. Baldrick's. I'm already thinking of when the next shave will be. I hope to plan the first International 46 Mommas Support Shave by next spring in Japan! There are still children fighting, so I will keep fighting as well.
That's about it for us. Hope all of you are well.
12 December 2010
Almost three months without a post. Hard to believe, eh?
Then again, maybe not.
I could say that not a lot has been going on, but that would be a lie. I just haven't felt like posting here I guess. In case no one has noticed, I've removed the Guestbook form. You can still go to the Guestbook page and read the entries from the old site, but there is no longer an option to sign the Guestbook. That isn't because I don't want to hear from anyone. It's because I don't hear from anyone at all. In the past three months, there has not been one new post to the Guestbook. Sadly however, there have been dozens of spam posts wanting to enlarge parts of my body that I don't even have, or referring me to new porn sites that I might be interested in (not). I got tired of spending so much time deleting posts while never receiving anything real.
It's all good though. I realize that everyone else has moved on. Keeghan's story is no longer a story for all of you. For me it is. For Mike and Maxx it is also. For us, Keeghan still is. But I guess I can't expect him to be real to anyone else anymore. He's someone who was.
The people who have always been so supportive know how to reach me on Facebook or via email. For everyone else who finds this site, I hope you'll take the time to read about the incredible boy who is my son. Until a cure is found, his story will continue to be relevant.
Shannon - mother of a hero.
16 September 2010
For those of you who watched Stand Up 2 Cancer last Friday, you may have noticed that the slide show of us 46 Mommas that played in the background while Lady Antebellum were performing was . . . well, cut out for the most part. So Keeghan and I - along with many other moms and their children - didn't show up on television at all, which is pretty sad because it was an amazing slide show.
So . . . for those who would like to see it, here you go. One of the moms on our team, Mimi, managed to get it from the SU2C folks. I've been asked not to publish this out on Facebook yet because Mimi is still tweaking the music on it a bit, but I just couldn't wait to show you all. These were some amazing women, and I will forever be a better person for having gone to LA to meet them all.
Before I begin to write about the week spend in Los Angeles, please watch the following video. These pictures were all taken at the shave event by photographer Ray Schiel. He has put together a video that is so powerful. I hope that you will all share it with everyone you know and help the 46 Mommas to continue spreading the word.
Remember - with awareness comes donations, with donations come research, and with research comes a cure.
12 September 2010
Where to start about the trip to Los Angeles . . .
First off, we decided to turn the trip down to LA into a mini-holiday, so rather than take the straight-shot drive and get there in one day, we turned it into a 3-day trip. We left our home in Northern California on Sunday and drove to Monterey, arriving around lunch time. We then spent the afternoon walking around Cannery Row. It was a great time. For dinner we found a restaurant where we could sit outside by open fire pits. We had planned on staying for dinner and then going back to our hotel, but we were joined by two other couples, Chris and Kelli, and their two beautiful little girls, along with Michael and LynnDee, and their two dogs. Those of you who know Maxx know that she has a huge love of little kids and animals. Well, one of Michael and LynnDee's dogs - Ralph - has a brain tumor. That really struck home with my daughter. Needless to say, I think Maxx made and extra special connection with little Ralph, spending quite a bit of time sitting on the ground and just cuddling him. We ended up staying at the restaurant for more than 3 hours! It turns out Chris and Kelli live only a half hour away from us! We drove 3.5 hours to meet people who are practically neighbors - how cool is that? It's amazing how you can meet - and be touched by - people at the most random of times!
Here is Maxx and I on the beach in Monterey.
On the second day of our trip we drove down Route 1 from Monterey to just outside Santa Barbara. Mike had never driven the coast road before, and I wanted he and Maxx to see what I consider to be the most beautiful part of my home state - the rocky cliffs and crashing waves! It was gorgeous.
On Day 3 of the trip we arrived at out hotel in Culver City and started to meet the 46 Mommas as they rolled in. I'm still struggling to find the right words to describe how it felt to finally meet everyone. I joined this team in November 2009, so for ten months I've been emailing with most of the team, and I've been able to look at pictures of them and their beautiful children on 46mommas.com, but to finally meet . . . it was a very powerful thing. What was truly powerful though was heading to Hollywood that afternoon for the shave event.
St. Baldrick's really did it up for this. We were on stage, six at a time, to get shaved. I was shaved by Carolyn Hennesy from General Hospital, and Finn Wittrock from All My Children. That was kind of cool (although I have to admit, I don't watch the shows, but still . . . to have actors up there shaving us was pretty neat). Maxx went up on the stage with me. I had expected the shave to be emotional for me, but I never realized how emotional it would be for my daughter. Just before it was my turn to go onstage, she started to cry. She sat at my feet as I was shaved and held my hand (you can see her in the video above at around the 2:33 minute mark). I think we both cried through most of it!
I can't remember exactly what was going through my mind as I was being shaved. I remember looking up and thinking, "Boy Keeghan, I hope you're watching this!" There were so many cameras pointed at us - it was surreal! But I just kept myself focused on sitting still and hanging onto Maxx until it was over!
And then there was the finished product!
Another picture for all my young friends out there - this is Dave DeLuise (yes, son of Dom DeLuise), who plays the dad on Disney Channel's Wizards of Waverly Place. It was very cool for Maxx and I to get our picture taken with him since she used to watch the show with Keeghan.
We also went to Sony Studios for our first rehearsal for the Stand Up 2 Cancer show on Wednesday. We met the members of Lady Antebellum as well as Kris Kristofferson. We also got to see the full slide show that was playing in the background behind Lady Antebellum as they performed. It showed a picture of every Momma with her child followed by a picture of that Momma getting shaved. Sadly, when the performance was edited for television, Keeghan and I were edited out. The team is hoping that we can get our hands on that slide show however, so that we can share it with everyone.
Thursday in LA was a free day so Mike, Maxx and I took off on our own and went to Santa Monica. I have to tell you, feeling the sun beating down on my head was . . . disconcerting! Even with sunscreen, it felt like my head was burning (which was a great reason to buy a cute hat!). We walked along the pier before all the shops were completely open. It was nice - not crowded yet, you could hear the waves crashing, and the beach was mostly empty. There was a woman on the pier that I just HAD to take a picture of Mike with though. Classic, right? I think Keeghan would approve of this one!
Friday was the big Stand Up 2 Cancer day. We had to be at the Sony Studio lot by 9:30 that morning, and for the rest of the day it was a lot of hurry up and wait. We had two more rehearsals on the stage, we ate lunch in the Sony Commissary, visited the Sony store. It was fun and, again, a bit surreal. I apparently walked right past Renee Zellweger and didn't even know it! Some people in our group saw Adam Sandler and Tom Hanks. Country singer Martina McBride drove past us and waved. Later in the afternoon, as we were all standing together waiting to enter the stage, Stevie Wonder walked past us. Apparently he asked someone what the big group was all about, and when he was told he asked to meet us! So his group turned around and came back to where we were and he spoke with us for a few minutes. What an amazing soul he is! Here we all are with him (I am on the far left in front).
Finally, after the show was over, we all went with our guests to the after party. We had been told that cameras were not allowed, so sadly I didn't get pictures of all the celebrities we met. But I did get one . . .
How cool is that - JAY LENO! He even kissed my bald head (HUGE thanks to my friend Denise for taking this picture for me). Besides Jay, we also met and got autographs from Mark Harmon, David Archuleta, Patrick Warburton, Ray Liotta, and two of Maxx's favorite singers, Delta Goodrem and Natasha Bedingfield. I even got to hug Rob Lowe and gave him a wristband with Keeghan's name on it. Overall, it was a great night.
The absolute highlight of the week for me, however, was meeting all of the other moms. So many beautiful women, each with their own precious child who had either fought, or is still fighting, cancer. Each with an amazing story to tell. These women touched me in a way that I will forever be grateful for, and I know that I will forever be a better person for having met some of them. Sadly, it was impossible to get to know every single one in just four days, but those that I did get to spend time with were just amazing. They came from all parts of the country - Philladelphia, New Jersey, New Orleans, Texas, Kansas, Virginia - and so many other places, from all walks of life, all there to represent the face of cancer.
I will forever be proud to call myself one of the original 46 Mommas.
Messages to Keeghan . . .
This is how we marked the two-year anniversary of Keeghan beating his cancer. We wrote letters to him on balloons and then took them outside and let them go.
3 September 2010
I realize I have been pretty MIA for the past couple of months. I have no plan to stop updating this site, it's just very difficult sometimes. July and August are very difficult months for all of us. I haven't reached the point yet where I don't automatically think of what was going on two years ago during those months. It's like watching Keeghan die all over again. My feelings on that time have not changed much over the past 24 months . . . it still makes me angry at the universe that he was taken from us. But I doubt the few of you who are still reading this want to hear about it again.
So instead, I don't write. At least not here.
But it is September now. It isn't that anything is easier. I still miss Keeghan. I can't explain - I just have an easier time dealing with September. That's all I can really say.
It helps that I am in the last couple days of preparing for our trip to Los Angeles, and all the details that go along with that are occupying my mind. In four days all of the hair on my head will be shaved off, along with all the hair on the heads of 45 other cancer moms. You're probably wondering if that is freaking me out at all.
Yeah. A little.
I keep asking Mike (who has been bald for as long as I have known him) what it feels like to put your head on your pillow at night and actually feel the pillow case on your skin. Showering is going to be weird too. Rain - my sister-in-law pointed out that one. How weird will THAT be to actually feel rain hitting my head?
And then I think of Keeghan. I am having all of my hair taken off in one fell swoop. But I am 44-years-old and not sick. How must it have felt to be 10-years-old and have your hair fall out in clumps, when you'd really rather it not fall out at all. Oh, and to know that it was doing that because you had a disease that could kill you.
So yeah . . . being bald is only freaking me out a little because what I am doing doesn't compare at all to what Keeghan did. He met cancer head on and never backed down. He didn't cry when his hair fell out, a feat that I doubt I will be able to match. He was scared, and he surely didn't want to die. But he was brave and faced it all, right to the end.
That is what I will remember, and what will likely have me bawling like a baby, as my head is shaved.
17 August 2010
I admit it . . . sometimes I get really annoyed with petty stuff. The little worries in life are so much of nothing, yet people turn them into something huge.
But you want to know something that really IS huge? My son should have started high school today. My daughter, who is starting 11th grade, always looked forward to being the Upperclassman to Keeghan's measly little Freshman. Instead, she went off to school alone today.
THAT is huge.
It's all about perspective.
7 June 2010
Wish I could write more, but life is crazy at the moment. I am working diligently on more projects than I probably should be at one time. The most important of those is turning Keeghan's journey with cancer into a book. On top of that I am still making jewelry to sell on Etsy to raise money for childhood cancer research, trying to solicit donations for my St. Baldrick's fundraiser in September, and compiling a book about our 46 Mommas Shave for the Brave team. Add keeping my house clean and entertaining a 16-year-old who is off on summer vacation to that and I am one busy person. Please forgive me if my updates here are few and far between.
23 May 2010
Everything is going as well as can be expected for the family lately. Maxx has been in high-stress mode getting ready for the end of the school year. I have been in high-stress mode thanks to her stress. Seriously, I never realized that having a child in high school would make me feel like I'm in high school again! So much drama!I'm so glad the year is almost over.
Mike has been crazy busy with trips all over the place for the Air Force, but hopefully is finished with those for a while. We should be finding out in the next month whether or not he was selected for promotion to Lt. Colonel. Crossing fingers!
I am cooking up some ideas for setting up a "writing space" in Keeghan's room. Besides putting his story into book form, I'm going to be working this summer on turning a story that he was writing into a childrens book. We'll see how that goes. On top of all that I am still trying to drum up donations to my St. Baldrick's team. I have raised $2000 now, but I think there is more to be done. If everyone who reads this website donated just $1.00, I'd probably have another $500. Something to think about dear reader . . .
For anyone interested, here is my latest article - 46 Mommas Shave for the Brave.
27 April 2010
I am starting a new blog for anyone interested in following it. It can be found here: Skeleigh's Thoughts on Life.
I want this website to be a place to update friends and family on how we are doing. That is how this all started to begin with - it was a way to keep everyone updated on how Keeghan was doing so we didn't have to call everyone. Also, writing was my way of getting all the things that were jumbled up in my head sorted out. It was my therapy.
Writing still does that for me, but sometimes the things that are jumbled up in my head have nothing to do with Mike, Maxx or Keeghan. They have nothing to do with cancer. Or maybe they do, but what I want to say is so full of anger . . . and I don't want to taint this site with all that anymore. Keeghan's memory deserves better than that.
I still plan to update here because I know that people care about how we're doing, and because I think it is important to show how cancer continues to affect families, even after the person with cancer has died. Sadly, at least for me, there is a lot of anger that goes along with this journey. There are daily tears. It is what it is. But you, kind reader, don't need to be subjected to my rants and I don't need to be subjected to those few of you that feel you have the right to tell me what I should and shouldn't write anymore. At least on the other site, if you want to do that, your comments will be seen by all. Perhaps people won't be so up on their soap boxes when they know that what they say - and my responses - will be out there for everyone to see.
Hopefully I'll see some of you over there.
19 April 2010
Nine families across America will be told today that their child has a brain or spinal cord tumor.
Tomorrow will be four years since the day we were told that Keeghan had a brain tumor. Four years since the course of all our lives changed forever.
I'm trying very hard to not let myself become bitter, to not carry so much anger with me all the time. It's very hard though. But I'm trying.
There's really not much more than that to say right now. Everyone is doing well. Mike is getting ready to take yet another trip for the Air Force (in the past three months he's been to Washington, DC, Chicago, and San Diego). This time he will be in Texas though, so he will get to visit his family, which makes it a good trip for him.
Maxx is trudging along with school. She recently joined a Cancer Awareness Club at school. At her first meeting she was appointed the official leader of the club for next year since every other member is a graduating senior! That was an unexpected but pleasant surprise for her. The reason she didn't join the club at the beginning of the school year was because the sign-up table was covered in pink ribbons. Like her mother, she's tired of seeing pink everywhere she looks. But she already has ideas for how to bring awareness of other types of cancer to the student body, as well as for a fundraiser for the club, so I think she's excited about it now.
I have been busy with jewelry-making, fundraising, and trying to find a part-time job. I wish I was having more luck on the job hunt. I'm starting to think that having two degrees is hurting me more than helping me. It would be different if I wanted to work full-time, but I don't. Oh well . . . hopefully something will come up soon.
In other news - I finally ordered new silicone bracelets with Keeghan's name on one side and "Cell by Cell" on the other. If anyone would like one (or more), please drop me an email at firstname.lastname@example.org and let me know.
29 March 2010
How is it possible that March is almost over already? Craziness!
Just a quick update since I haven't posted in a while. Life is chugging along here. Mike is working. Maxx is going to school. I continue on with trying to raise money for my St. Baldrick's fundraiser. For a while there it seemed like a lot of people wanted to see me get my head shaved, but lately? Not so much. I need to start pestering people again I think!
I'm adding an old picture today. I said after the website crashed and I had to rebuild it that I didn't want to have all pictures of Keeghan while he was in treatment because he was so much more than Keeghan, The Boy With Cancer. But this is a great picture. I was talking on the phone and he decided to come sit on my lap. We laughed at the time and said, "You're never too old to sit on your mom's lap!" Looking back, I think that is so true. He had already been diagnosed with cancer when this picture was taken (obviously by his chemo hair), but all of his MRI's since surgery had come back saying there was no evidence of tumor so we really thought that he had beaten it. I'm glad I didn't pass up the opportunity for that close moment of him sitting on my lap now because I'll never have it again.
So if you have the chance to hug your child, or let him/her sit on your lap today, do it. For me, and for Keeghan.
16 March 2010
A wonderful woman named Heide from my St. Baldrick's team is the creator of the Pediatric Brain Tumor Wall of Courage. If you scroll down to the K's in the Gallery of Kids, you will find Keeghan's picture because I submitted it to Heide to be added to the site. Heide has now taken the Wall of Courage even further, creating "gear" for each child on CafePress.com.
I realize buying a coffee mug or t-shirt with my son's picture on it might not be something you want to do, and I get that. But if you DO want to spread awareness - especially with May, Brain Cancer Awareness Month, just around the corner - you can use Keeghan's beautiful smiling face to do it! 100% of all proceeds go to the Childhood Brain Tumor Foundation whose Founding/Senior Medical Advisor happens to be one of Keeghan's doctors from Children's National Medical Center, Dr. Roger Packer.
So, if you are interested in seeing this fabulous gear, please click HERE.
15 March 2010
I’ve been working on a post in my head for a couple of weeks now and just haven’t been able to make myself sit down and write it out. It’s not that life is going bad lately or anything. It’s just that some of the things I feel are really hard to put into words.
A lot of the time I feel like my life is very surreal. Mike, Maxx and I talk about Keeghan a lot. He’s never far from our thoughts, and we’ve never been afraid to talk about him. We remember things that he said, but we also talk about how we think he would react to something that is going on right now. Maxx and I even had a funny conversation a few days ago about what we thought Keeghan would be like now. Maybe it is because we talk about him so much that when I remember actually talking to Keeghan, hanging out with him, and just generally having him around, it doesn’t seem possible that it has been over a year and a half since he died. That just can’t be true, can it?
It was one day while I was thinking about that - the fact that he’s been gone so much longer than it feels like he’s been gone - that the following words popped into my mind.
This isn’t my life.
It’s true. This isn’t my life. It certainly isn’t the life I planned. In MY LIFE, Keeghan is 14-years-old right now. He probably stands about 3 inches taller than me, which means he stands about 4 inches taller than Maxx - a fact that is no small source of irritation for her! He eats me out of house and home (something he was well on his way to doing when he was only 10). He’s popular at school, but probably gets into trouble occasionally for his snarkiness. His grades are excellent because he prided himself on being smart and would settle for nothing less than being the smartest kid in his class. He’d be graduating from 8th grade this year, but would have no fear at all of being a Freshman next year because he’d have his best friend just two years ahead of him at school. And even though he’s the younger one, he’d be Maxx’s watch dog at school next year because no one messes with his sister!
That is what is going on in my life right now. There is no big empty hole in the middle of that life.
The problem with describing how I feel like this isn’t my life is that I’m left feeling guilty because of this other, alternate-universe life that I feel like I’m leading now. People love to point out to me that I have a husband and daughter still alive that I need to be thankful for, like I’ve completely forgotten about them. Well you know what? I haven’t and I don’t want to hear it anymore, alright? If it weren’t for them, I wouldn’t be sitting here writing this. I love them more than anything. I get up in the morning for them. I breathe for them and them alone. I put a lot of myself into raising money for childhood cancer research because it is important to me and it was important to Keeghan, but also because it is something to do.
There, I’ve said it. It’s something to do. It’s the one way I can feel like I’m still helping Keeghan, even though it really doesn’t help him at all. But it makes me feel like I’m still a mother to him because I’m carrying on with his dream of finding a cure. In reality though, I just want to be living my other life, the life we were all supposed to be living.
Enough on my whininess then, right? On to reality . . .
We just finished up Birthday Week a few days ago. Maxx is 16-years-old now. How crazy is that? I can’t remember if I’ve said it here on the website or not, but I have decided that I no longer want to celebrate my birthday in August, since that entire month is just one big block of sadness for me. Instead, I am now celebrating my birthday on March 7th with Keeghan’s birthday. So we kicked off Birthday Week with a trip to San Francisco. It had been seven years since the last time we did the tourist thing and went to Fisherman’s Wharf and Pier 39, so we got a hotel room just a couple blocks from the wharf and spent two days being touristy. One of Mike’s cousins from Canada sent us his young son’s Flat Stanley, so we took pictures of him all around the wharf and pier, as well as overlooking the Golden Gate Bridge. It was a good weekend. School during Birthday Week worked out well for Maxx as there was some sort of Spirit Week thing going on, so each day of the week was some different type of “dress up” theme. All in all, I think Birthday Week this year was far more successful than last year was.
One odd and funny thing though is that Maxx and I seem to be following some sort of new piercing tradition when it comes to Birthday Week. Last year she got her ears pierced a second time on Keeghan’s birthday. This year she got her lip pierced the week before his birthday, and I jumped on the bandwagon and got my eyebrow pierced the day after HER birthday. So the Kelley-Barry women are now sporting two new holes in their heads!
I woman that I had never met, but that shares a mutual friend with me, took part in a huge St. Baldrick’s event here locally over the weekend and chose Keeghan to be her “Honored Child” through the St. Baldrick’s website. Because I was so touched this, I wanted to be there to support her when she had the actual shaving done.
Probably not such a great idea.
There are two reasons that attending wasn’t such a good idea. The first is obvious - all of the people getting up and telling the stories of their own children with cancer tore me up. I stood in the middle of the mall and cried over every little lost life. It was equally hard for Mike and Maxx. But that was only part of the reason I did not enjoy being there. The event is held annually at our local mall. The organization that plans it and puts it on every year for St. Baldrick’s was founded by a local family who lost their son to neuroblastoma twelve years ago. The foundation is even named after their son. In fact, everywhere I looked I saw their son’s name or picture, or both.
While keeping their son’s name and face out there probably feels pretty good to them, it really didn’t feel good for me. Why? Because there are SO MANY other kids that should be remembered also. Yes, I want people to remember my son. I want his name to be known (because it is an awesome name!), and I want his story to be told. But I want the stories of all these other kids to be told also. The other thing that bothered me was that this little boy’s mother is very loud and flamboyant, getting up on stage to get everyone fired up . . . she comes across like a rock star. In fact, just about everyone who has been in this area for any amount of time seems to know who she is. Something about that just feels . . . weird to me. I can’t criticize the work she’s done though. This one St. Baldrick’s event raised over $1,000,000 for childhood cancer research, and it isn’t the only event they put on each year. I just don’t want to become a rock star because of my son’s death.
This may make me sound like a bad person, but I’m just trying to be honest. I’ve been told by numerous people that I should get involved with this organization but I just can’t bring myself to do it. Why? Because everything is done in the name of some other woman’s child and my own would be anonymous.
I know. I’m selfish. I’m forgetting about the bigger picture. I don’t care. Keeghan IS my bigger picture. When I raise money - and I will forever be working to raise money and awareness - it will be in my son’s name, in my son’s memory. And I expect any other parent who has lost a child to do the same. So if we do decide to turn the Cell by Cell Fund into a 501(c)3 non-profit, it will not carry Keeghan’s name in the title; instead it will just be called The Cell by Cell Fund or Foundation or whatever. His story will be told in the history of how the organization got started, but other children’s stories would be told as well, because raising awareness and money for research is for all of the children - those still alive and those that aren’t. Because none of them should be anonymous.
Like I said, I can’t criticize the efforts of this other organization, and maybe I’m the only one that feels weird at the thought of getting involved with them. I guess if I was a really selfless person, the cause would mean more to me than the name, right? I don’t know. For now I will continue my efforts to raise money for the causes that are important to me and wish this other group good luck with their own efforts, and we can just happily work separately.
It is what it is I guess.
24 February 2010 - again
I have to add another post for today to say that I AM SO EXCITED! I posted on Facebook yesterday that 100% of all Etsy sales from now through April 30, 2010 (at least) will be going to my St. Baldrick's team. Also, a friend of mine posted a link in her own Facebook. Since then I have received over $750 in donations.
For the first time ever I have not just met a personal fundraising goal, but I have exceeded it. And I plan to just keep going! Thank you, thank you, thank you to all who have, and still are, supporting me.
Like Mike said - you people really want to see me bald, don't you?
24 February 2010
This was written yesterday. I am posting it here with permission from the fabulous author.
The title of this is "Keeghan"
Of . . .
Don’t want to feel.
20 February 2010
So . . . completely eye-opening hospital experience this week. Not in such a good way though. I always knew that we had dealt with some very nice hospitals when Keeghan was sick. M.D. Anderson, Children's National Medical Center . . . even the two military hospitals, Walter Reed and Wilford Hall, were nice hospitals. So maybe my expectations going into surgery this week were too high.
I was admitted to U.C. Davis Medical Center on Tuesday for a total thyroidectomy. The surgery was expected to be fairly routine as far as thyroid surgery goes. I would have surgery Tuesday morning, stay one night in the hospital with a drainage tube in my neck, and then have the bandage and tube removed on Wednesday and get to go home. Unfortunately, the drainage ended up being of a higher amount than normal. The doctor wanted me draining less than 30 cc's per 24-hour period before I could be discharged. The first 24 hours I was over 70. The second over 60. The third over 50. I didn't think I would EVER get out of the hospital!
Let's add to that frustration a little though. I was an ENT post-surgical patient. The ward I was put on was an ENT/Internal Medicine ward. My first roommate after surgery was a woman with a bleeding ulcer. Numerous attempts had been made with this poor woman to find out where she was bleeding from, without success. In the meantime, she was vomiting and pooping blood. Often. Very often. I know this because I had to listen to it all. AND I had to use the bathroom where the dirty bedpans were left on the floor. Seriously.
My next roommate was a 77-year-old lady who, if I could, I would adopt as my own. She was an absolute doll. Unfortunately, she and I shared the room for less than a day. I thought that my third night was going to be a quiet one since I started off the night with no roommate at all. Then at 2:00am a new lady was brought in. It took from 2:00 until 4:00am to get her settled in. In that time I (not by choice but by sheer lack of privacy) was able to figure out that she was 80-years-old and had been brought from a local nursing home with numerous festering bed sores. She also had a PICC line that was failing but no one could figure out why. Oh, and she was mostly deaf. So every question asked of her was asked at a very high volume. Her answers tended to be even louder.
As I said, I had surgery Tuesday morning. By Friday morning, I was so sleep-deprived (I haven't even begun to touch on the many patients who screamed and yelled throughout the night from other rooms on the ward) that, when the team of residents came in to see me for morning rounds, all I could do was cry. I told them that I thought they were trying to kill me. I am not ashamed to say that I begged them to let me leave the hospital, even though they still didn't feel it was safe to pull the drainage tube yet. I explained repeatedly that Mike and I had plenty of experience with taking care of wounds and dressings and that I would be far better off at home where I could get a good night's sleep and a decent meal than I was in their filthy hospital. They didn't like it, but my surgeon finally approved it for me to come home.
So I got home yesterday around lunch time. I got a wonderful night's sleep last night. The meals Mike has made for me have been 5-star restaurant worthy. I still have the drainage tube though. Amazingly, it drained 47 cc's the last 24 hours I was in the hospital, but in the first 24 hours since I got home it has only drained 26. I go back tomorrow morning to see the ENT resident on call. If it has stayed below 30 cc's, they will remove it. YAY!
Honestly, I never realized how scary regular hospital wards could be. I remember the Army hospital that Mike and I worked in when we were in Germany, where post-op patients all went to a specific ward and "sick people" all went to another one. Apparently that isn't how it works at U.C. Davis! I can tell you that I don't want to find out if any other hospitals are that way though. I'm done!
For the record, for all the naysayers out there who thought I should go with the radioactive iodine treatment for my Graves Disease instead of surgery, I will say this: I am still glad that I went with surgery. I am able to sit next to my daughter and my husband without fear of passing radiation on to them. I am already on thyroid hormone replacement, as opposed to waiting indefinitely for my thyroid to die from radiation to start it. There is no chance that this procedure will have to be repeated as there is with RAI. I never chose to have surgery because I am vain (obviously, since I now have a 3-inch scar on my neck), but one of the first things Maxx said to me today when she got home from my brother's house was that my neck looks thin again! NO MORE GOITER! While that may not seem like much to all of you, it is big for me. So I am happy with my treatment choice. I just also know that I will never be a patient at U.C. Davis again!
Hope everyone is well.
12 February 2010I was trying to explain to someone recently how, sometimes, it is the smallest gesture that has the most meaning. I understand that people don't know what to say to me sometimes. I hate it that people feel awkward around me, but I understand. Sadly, I had my own opportunity to be around parents whose child had died before I was in their shoes, so I do know that feeling.
So sometimes it's better to say nothing, but to show you care through actions instead of words. One example that I love showing off to people is this:
I got to experience another of these "small gestures" today when I received an email from a local woman who is planning to participate in a local St. Baldrick's event next month and wrote to ask if Keeghan could be her "Honored Child" with St. Baldrick's. This is something that St. Baldrick's does that I think is fabulous - they allow people who volunteer to be shavees but don't personally know a child with cancer choose a child to honor. I submitted Keeghan's name to be an honored child because I wanted him to be MY honored child on my fundraising page. But to have someone else wish to honor him - someone who never met Keeghan and doesn't know us at all - is so amazing.
So a send out a big thank you to Christina for keeping Keeghan's fight alive and sharing his story!
9 February 2010
It is rare that I find a video that I want to share with all of you, but this one is a must. Westlife is an Irish group that the kids and I started listening to ten years ago, and we've been huge fans ever since. This is a song from their newest album, Where We Are, and it is called I'll See You Again. It was written by a woman to her son who had died.
The first bit of the video is kind of funny - sorry, I couldn't crop it out. Just listen to the words of the song though.
2 February 2010
Having a crying day today . . .
I have a few other "cancer moms" that I check in with occasionally, and this morning I was reading one mom's blog and she talked about how she walks the aisles of stores looking at things that her daughter loved to shop for and just cries. It made me laugh and cry at the same time because I so know that feeling. The store that I have the hardest time with (and I know, this sounds ridiculous) is Old Navy!
What can I say? My boy liked to look good . . .
We go in that store and I see all the cool boys' hoodies and track pants and jeans . . . and I lose it. I miss buying those things for him. I miss him.
I have been keeping myself crazy busy lately. All last week it was with jewelry. My goal was to have 100 items for sale on Etsy by February 16th, the date of my surgery. By the end of the week I had 134 things for sale! So now I feel like I can take a break from that for a bit and (hopefully) sit back and let things sell.
One interesting thing that came from Etsy last week was that I had someone contact me and ask if I'd be interested in making a large quantity of cancer awareness pendants for a Relay for Life team. Of course I said yes! Not only would having them sell the pendants for their team be raising money for a good cause, but what they pay me for them will be for a good cause as well. What a great win-win, right?
This week my "keeping busy" has headed in a different direction. So far I have raised $430 for my St. Baldrick's team, but I have a long way to go. I set an initial goal for myself of raising $1,000 but it turns out our team captain set an even loftier goal for us - she wants the team to raise $1,000,000 by September when we all get together to shave our heads! That means each of us 46 moms has to raise nearly $22,000 to meet our goal! I know that it is unreal to expect to get that much in donations from friends and family, so I have been working this week on contacting local media - newspapers, television and radio stations - to try to drum up donations and/or corporate sponsorships. I've also contacted some of Keeghan's favorite bands, celebrities and authors. Even if all they do is put a link to my fundraising page on their own websites, that's something. I'll take anything I can get at this point.
If anyone else has ideas, pleaselet me know!
I've participated in a number of cancer fundraisers over the past few years and never once have I met the goal I've set for myself. This time I want to. More than I can tell you.
A few announcements to end this post:
- If you haven't signed the petition for a Brain Cancer Awareness postage stamp, I hope that you will (click HERE).
- The graphic shown below of my jewelry items for sale automatically updates when I add new items, so remember to check it out whenever you're here - you just might see something you like!
- My St. Baldrick's fundraiser page can be found HERE - show me how badly you want to see my head shaved!
28 January 2010
I just got this over email today and wanted to share it right away. I'll type more of an update later, but for now won't you please consider signing a petition to create a Brain Tumor Awareness postage stamp?
Thank you everyone!
GIVE ME 5!
Give me 5! Just 5 minutes of your time.
1) 5 is the number of different types of chemos Keeghan received while being treated for cancer.
2) 5 is the number of surgeries Keeghan had.
3) 5 is the number of children that will lose their battle to cancer in the next 12 hours. 12 HOURS!
4) 5 is the number of years without cancer a child needs to be before they are considered cured.
5) 5 is how much money I am asking you to donate. Send this to 5 of your friends and ask them to do the same. Read about my cause and make your donations here.
You can donate more than $5, all donations are tax deductible.
24 January 2010
Another one of Shannon's Bizarro Dreams.
Mike left to fly to DC today for a conference, so he was up and out of the house by 4:00 this morning. It was after he left that I had this dream.
I was in a room somewhere (no clue where it was), and a group of kids, all about Keeghan's age, came filing into the room. Actually, it was more like they were walking single-file through the room; they weren't actually stopping in the room I was in. Suddenly, as I watched this group of kids, there was Keeghan with this big ol' grin on his face!
There aren't words to describe the instant, absolute joy I felt when I saw that smile! Just know it was a powerful thing.
I immediately held my arms out to him but he made a motion to me like he had to stay in the line and couldn't come hug me, but he touched his fingers to his lips and then held them out to me. I touched my fingers to my lips and held them out toward him as well and then just continued to grin like a fool at him.
After the whole group got into the next room Keeghan came back to me. He sat down next to me and said, "Mama, did you see the shining star?"
"What star?" I asked. He pointed to a photograph of a star in the sky that was on the wall right behind us. "Yeah Bubby, I saw the star" I said, smiling at him.
Then he reached his hand out like he was going to push my hair out of my eyes. The minute his hand touched me, I let out this sort of gasp/sob. At that same moment I woke up, letting out that same gasp/sob. And then the tears came.
I don't know anything about interpreting dreams, so I have no idea what this meant, if anything. It just felt so real, even though I have no idea where the place was or who any of the other people in the room were. Keeghan was there and I was there and we were both so happy to see each other. That part felt real.
21 January 2010
Not a lot to write about today, but I wanted to post a link to my Etsy shop. I've been busy, busy, busy making pendants this week, many of which are cancer awareness ones. I'm trying to get my shop up to at least 100 items for sale before my surgery next month so that I can take a break. The problem is that people keep buying things, so then I have to make MORE! Of course, this really isn't a problem at all . . .
Anyway, feel free to take a look!
15 January 2010
Sometimes it is impossible to stay busy enough. I know this because no matter how hard I try, I can't seem to escape the tears this week. I have been a jewelry-making fool these past few days, having made at least 30 pendants and earrings. I listen to audio books while I work, or blast music and sing along. And always Keeghan is there with me. I don't mind it though. It's not like I want him to go away, or thoughts of him to leave me. I just make sure to always have a box of Kleenex nearby.
The car still seems to be the hardest. I needed to run an errand first thing this morning. As I left the house my thoughts were only on getting to Michaels and then getting home; I was anxious to get to work on the cancer awareness pendants I was going to make when I got back. I don't know what set them off but suddenly, as I was driving on the highway, tears were streaming down my face. It's like my subconscious does everything possible to keep that one thought - that he's gone - from surfacing but then reality, as it is known to do, pushes through the haze.
Yesterday I had the fun task of having to call our bank and tell them that they no longer need to send Keeghan new debit cards. Apparently his old one expired a few months ago and they sent a new one. It's been sitting on my desk all this time, just waiting for me to call them. When it came in the mail and I saw that it was addressed to him I was a little confused because we had let USAA know that he had died not long after it happened. So I couldn't understand why something would arrived from them addressed to him. Anyway, I finally forced myself to call the bank and got some poor young man on the phone who, upon being told that my son no longer needed a bank card because he had died, became completely tongue-tied. He eventually managed to get out, "Can I place you on hold for a moment?"
It was probably a good thing that he put me on hold because as soon as I spoke the words "he died" I started to cry. Seventeen months of having those two words be the first that come to my mind every morning when I wake up and I still can't speak them out loud without crying. I can't even type them without shedding a few tears! Eventually the young man came back on the phone and stated that he was transferring me to a manager and she took over the call. She was very pleasant, extremely apologetic, and said she'd make sure we didn't receive any more mail to Keeghan.
Those are the kinds of little things that still come up occasionally that, on the surface, seem like mere annoyances but when you actually try to deal with them, are crippling. I keep thinking that it all has to end at some point and that someone has to jump out and say, "Ok Shannon (and Mike and Maxx and everyone else who misses him), you've suffered enough, here's your boy back." But that can't happen.
So instead I keep busy.
11 January 2010
Starting off with another pic of Keeghan that is new to the site. I'm trying to use pics that weren't used on the old site so that people can see my baby in ways that don't always relate to cancer. He spent 10 years of his life as just Keeghan, not Keeghan The Boy With Cancer. That's who I wish to share with you now.
Eleven days into the new year already . . . seriously? The Christmas Season (or Season of Ugliness as I like to call it) took FOREVER to go by and now we're already almost half way through January.
That's so annoying.
Life is going well here I guess. Maxx is back into the swing of school, Mike is back to work, and I'm back to blogging and making jewelry. I have a goal as far as jewelry goes this year. I want to raise enough money ($1,000) to sponsor a dorm at Camp Fantastic and name it "The Celts" for Keeghan, and I want to raise enough to sponsor Mike with $1,000 for this year's Pediatric Brain Tumor Foundation Ride for Kids. It seems like raising $2,000 should be pretty easy, right?
On top of all that I have joined a team of women who are planning to have our heads shaved in September to raise money for St. Baldrick's Foundation. Because 46 children are diagnosed with cancer every day, our team captain wants to get 46 women on the team to shave our heads and represent those children. As of now we only have 24 team members so if you or someone you know wants to join our team, please go to our Team Page. If you would like to sponsor me as a shavee, please go to my Participant Page. Our captain is working with St. Baldrick's to get national media coverage for our team. In fact, she's hoping to get us all on Oprah for the actual shaving! We'll see how that goes! As of right now I am the only team member in California, so I will soon be starting a serious media campaign, contacting all of the major newspapers and news channels in the state in an effort to drum up attention.
So, that pretty much sums up what's going on around here. I'm still wanting to look for a part-time job, but until I have surgery next month and am released to work, I'm just filling in the time with the things I do best - yakking on my various blogs and making jewelry. I do whatever it takes to keep myself so busy that I don't have too much time to think. Thinking is bad. Thinking brings on tears, and if I give in to those, my day is pretty much shot. Keeghan is always on my mind - the emptiness my arms feel without his hugs, the silence of the house without his laughter, the boredom I experience without his conversation, the hole in my heart that misses his life . . . all of those are never ending. I have no choice in that, so I just do what I have to do to keep moving.
Welcome to my world.
I'm ending to day with Maxx's camp picture from last summer. Isn't she beautiful?
5 January 2010
I have been working for about two hours now on formatting the old guestbook entries, trying to make them a little easier to read. In doing that, I find myself reading the posts and I can't help but be . . . humbled. I've spent so long now being angry, and I know that isn't what Keeghan wants for me. But gawd, it's so hard!
Before Keeghan was ever diagnosed with cancer, Mike and Maxx and I used to say that, even though he was the youngest, he was the wisest of us all. He was certainly the most mature! In so many ways, he was the heart of the Fantastic Four. He had the biggest heart, that's for sure. He was kinder, more compassionate, and more forgiving than any of the rest of us.
We have all suffered for not having his grounding influence around. I look at what it has done to our relationships - with each other as well as with others - and it kills me, but I don't know how to fix it. So instead I get angry. Man, do I have a serious capacity for anger! It's not just anger at cancer. It's anger that I kept bottled up for years, trying to be a mature adult and "let it slide." Screw that - I'm letting it all out now! I feel anger toward people who have done absolutely nothing to me. I'm angry that they have whole families and don't know my pain. I still get angry at stupid stuff people say - "I'm sorry for your loss, but I'm sure you have lovely memories of your son." You don't even want to know what I say to those people!
But the truth is, I don't want to be this angry. I want to be happy. I just don't know how. I read all the beautiful things people said about Keeghan, and I feel shamed. So much support sent our way and all I can do is be pissed off? What is wrong with me?
I have bought so many books since Keeghan died . . . books about After Death Communications, and Life After Death, Why Bad Things Happen to Good People. I read books about people who have lost a child. I don't know what answer it is that I'm looking for . . . I guess I just want to know that he's ok. That he's not mad at me for not being able to fix things so that he could stay. Because I'm definitely mad that I couldn't fix things, so I can't understand how he could NOT be mad.
I'm a mess, eh?
I thought things would start to get easier after that first year without him went by, but it doesn't seem to be that way. It comes in waves though. I can have a few weeks of doing alright - crying occasionally, but being able to smile when I look at his picture - and then I'll have days of nothing but tears. Nothing but missing him and feeling so broken. I must be a real pain to live with!
Anyway . . . in an effort to stop rambling and crying, let me just say this. To all of you who have offered support and who may think I seem like a complete ingrate - thank you. I'm sorry that I'm not able to let you help, but I do appreciate the offer. I hope that my anger problems will not stop anyone from remembering Keeghan's bright light, or Maxx's beautiful soul. I just need to figure myself out I guess.
4 January 2010
As you can see, the website has changed. This wasn't exactly by choice. As many of you who visit here often have probably noticed, the old site was . . . well, broken. The Guestbook hadn't been showing up for a while, and I was no longer able to add new updates. When I tried fixing it I found that the software I used to create that site was no longer being supported by the ISP I use. So I had to start a completely new site.
So as always, this site is a work in progress. I will be working on it quite a bit in the coming weeks I'm sure. I am having surgery in mid-February to have my thyroid removed and have already been told to expect two weeks (minimum) of doing nothing after surgery, and then another four weeks after that of minimal activity. That is when I will probably work on adding a lot of the pictures from the old site onto this one. For now, I will settle for this one picture of my beautiful boy with me in happier times.