Another new year to spend without Owen. We found out that he is having a little brother. He would have made such a good big brother. I really am missing him a ton. As always, it is so difficult to spend the holidays without him. Every tradition is painful without him, and doing things he didn't have the chance to do really tears at my heart. I try to act happy. I just wish I felt what my face shows.

I hope that everyone had a magical holiday and that you were able to spend time with loved ones

As we near the holidays, here are some gentle reminders about what is truly important in our lives:

1. Life isn't fair, but it's still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone....
4. Your job won't take care of you when you are sick. Your friends and parents will. Stay in touch
5. Pay off your credit cards every month.
6. You don't have to win every argument. Agree to disagree.
7. Cry with someone. It's more healing than crying alone.
8. Save for retirement starting with your first paycheck.
9. When it comes to chocolate, resistance is futile.
10. Make peace with your past so it won't screw up the present.
11. It's OK to let your children see you cry.
12. Don't compare your life to others. You have no idea what their journey is all about.
13. Everything can change in the blink of an eye.
14. Take a deep breath. It calms the mind.
15. Get rid of anything that isn't useful, beautiful or joyful.
16. Whatever doesn't kill you really does make you stronger.
17. It's never too late to have a happy childhood. But the second one is up to you and no one else.
18. When it comes to going after what you love in life, don't take no for an answer.
19. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.
20. Over prepare, then go with the flow.
21. Be eccentric now. Don't wait for old age to wear purple.
22. No one is in charge of your happiness but you.
23. Frame every so-called disaster with these words, 'In five years, will this matter?'
24. Always choose life.
25. Forgive everyone everything.
26. What other people think of you is none of your business.
27. Time heals almost everything. Give time time.
28. However good or bad a situation is, it will change.
29. Don't take yourself so seriously. No one else does.
30. Believe in miracles.
31. Don't audit life. Show up and make the most of it now.
32. Growing old beats the alternative -- dying young.
33. Your children get only one childhood.
34. All that truly matters in the end is that you loved.
35. Get outside every day. Miracles are waiting everywhere.
36. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.
37. Envy is a waste of time. You already have all you need.
38. The best is yet to come.
39. No matter how you feel, get up, dress up and show up.
40. Yield.
41. Life isn't tied with a bow, but it's still a gift.

The Compassionate Friends Worldwide Candle Lighting is tonight in quiet remembrance of children who have died. So, this evening I will light my candle in memory of not only my child ,but in remembrance of all children who blessed the lives of their loved ones for far too short a period of time . . . . may their light may always shine.

May everyone find something to be thankful for, today and every day

Here is something that I wrote to a family who has experienced what a year in the life of a child with cancer does:

After years pass rather uneventfully, it is pretty amazing to see how incredibly life as you know it can be yanked out from underneath you, leaving nothing but a narrow rope for you to stand on. All light bulbs around you explode, leaving you in total darkness, unable to see where or when you are going to land if you fall, or once you reach the other side. You have no safety net, but you must continue walking on that tightrope, in the dark, holding on to everything you love, hoping that somehow everyone will be ok.
A year has gone by. It's hard to know how much of the tightrope you have left to cross, but you have become steadier as you try to figure out where it leads. You still don't know where you are going, but as you have been walking, you have discovered that although you may teeter here and there, you have done just fine without that safety net.

When you see a bald, swollen child struggling to walk, but wanting so badly to do it on his/her own, big eyes staring up at you, swallowing often to keep from being sick, please remember that that child needs your love, not your pity. S/he wants to be seen as a normal child, not a sick one. Cancer does not kill the hopes and dreams or spirit of children. They still want nothing more than to just be kids.

When people say that time helps to ease your pain they lie

I wonder what Owen would have been for Halloween this year!? He always had so much fun dressing up in costumes-all year long! This would have been an extra fun year for him, though, because he would be in kindergarten and be able to have a class Halloween party.

Missing you, Frogger.

On October 8 last year, I lost my son. Never again will I hear his sweet voice or giggle, or kiss his chubby little cheeks, be wrapped in his hug or smell that smell that was his, and his alone...

There is no possible way to describe how much I miss you. I love you, Owen. Now and always, you will forever be my favorite Owen in the whole world.

He was here with me, next to me at this time last year. I didn't know then how I would be able to live my life and go on without him once he was gone. I am still trying to figure that out.

We are back from Florida, and we did stop off at Give Kids the World while we were down there. We saw Owen's star in the Castle of Miracles, and his stone paver, which is in front of the movie theater. We also go to see (and hug!) Mayor Clayton!

There have been several changes that they have made, GKTW has added a My Little Pony spa, a life size Candyland playground, a Boston Market food place, and a bunch of new villas for families to stay in. I wish we had been able to stay there when we went last April-he could have been tucked in by Mayor Clayton and Miss Mary! We had a great time, though. I am so grateful that a place like that exists to help see that children get their wishes!!

September is Childhood Cancer Awareness month. Keep this in mind as you go about your day to day activities. There are children newly diagnosed, currently fighting, some have lost their battle, and others have yet to be diagnosed. Do not believe that you or someone you know and love is immune to cancer. Only when there is a real cure can we call ourselves victorious against this horrible disease.

I am headed to Disney in about a week for a belated honeymoon. I plan on making a pit stop at Give Kids the World to see Owen's paving stone and star in the castle. I wish he was going to be there with us. I have read that there have been several changes to GKTW since we were there last April.

Going to Disney itself will be bittersweet. It holds many fond memories of Owen's Make a Wish trip, but it will be sad to know that he will not be able to visit there again. What an awesome trip he had when he went, though! He lived like a King-which he was!!

There is a message board where parents who have lost their child to a brain tumor can talk. One was sad because it had been 6 months since her son had passed away, and that it was getting much more difficult to deal with the pain. How true. Time does not always make things better. Sometimes it makes it worse...

The numbness wears off. Apathy takes over. Then the pain begins. It affects us all differently, and at different times. There is no such thing as "normal grieving". I get annoyed when watching shows that make ignorant comments like "That person was not acting like a parent who just lost his/her child." Really? You would know this because you have experienced the death of your child? Even if so, every person handles his or her grief in their own way. For instance, on the day Owen died, Matt, the boys and I went out for lunch. We needed to do that for ourselves, to normalize things, to get out of the house for a little bit and focus on something else, on each other. There were no tears at lunch. Some people would have looked at us shocked and appalled, I am sure, if they had known that we were out to eat and that Owen had just passed away.

I get so angry when people judge other people. NO ONE knows what that other person's life circumstances are, and even if they share similar experiences, everyone deals with things differently. Instead of being critical of the person for not doing things the way that you may do them, try to have some empathy and see that just because you may have expectations for how something "should be" does not mean that you are right. Also, accept that there may be more than one "right" way to do things, and your "right" way, may not be right for someone else.

Let's give a little more love, and alot less judgement, hatred, criticism, and anger.

I think about how, one year ago, right at this moment, Owen was alive and with me. He still had quite a journey ahead of him, but he was here-awaiting our Christmas celebration on July 21...So much has changed in a year. Soon, I will no longer be able to write things like "Owen was alive a year ago today..." That is incredibly sad for me. What I wouldn't give to give him a huge hug and hear his sweet voice right now...

love you, Frogger.

...missing the Frog man

his birth:
…and then my world was complete. I realized that all of the other things I had wanted in my life, that were my life, were merely that—things. I promised myself that from this precise second on, my mind will no longer be consumed by thoughts of the things I do not have that a friend or neighbor does. I will look upon your charming face and recognize that, as long as I have you, even if I have nothing, I have everything.

and death:
I both hear and feel it when you take a breath-shallow and quick. Your cough is only a sound, your body to weak to move a bit. I remember reading that when babies are born too early the benefit of having the mother hold their child skin to skin encourages the health of the baby and decreases the mortality rate. It’s called "Kangaroo Care". You and I used to sleep in the recommended position: tummy to tummy, head in between the breasts. The baby's head is turned so that the ear is above the parent's heart. You are no longer able to be in that position comfortably, so instead I place my arm under your shirt, your stomach warm on my skin. I try to believe that, as a wanna be wallaby, my skin against yours will grant me a few more days, hours, minutes with you, because I don’t know what I will do if it doesn’t….

Some days there won't be a song in your heart. Sing anyway. ~Emory Austin

I have been lucky to have my dreams filled with Owen as of late! Last night, I dreamt that I was taking him to the zoo. The best part of the dreams, however, is that I have the knowledge that he is gone, so I absolutely take full advantage of the time I am spending with him in my dreams-extra hugs and kisses and "I love you" s. Feeling the weight of his body on mine as he lays across me, as he did each night when he was here with me, the feel of his fuzzy head against my cheek and lips--it's all there in my dreams.

Have you read the book "My Sister's Keeper" by Jodi Picoult? It's one of my favorites.  I read it before Owen's journey with cancer...hits home harder now, obviously. It's about a family with two daughters. One has leukemia. The other was conceived to be a bone marrow donor for her sister.  When that daughter reaches 13, she decides that she no longer wants to be the pin cushion and donor for her sister and sues her parents for the rights to her body, with potentially fatal results for her sister.

  The book has been made into a movie that is being released in June.  I am sure that it will be phenomenol.  Jodi's books have all been books that really force you to ask questions of yourself and question what you believe.  I hope that the movie does the book justice.  If I taught high school English, I would love to have the book included in my curriculumn.   

  Keep Owen's smile in your thoughts--I always do!

   I was reading back through my calendar yesterday, and was amazed by the amount if days that Owen spent in the hospital. It was not rare for him to go into the hospital on a Friday for chemo, expecting to leave on Sunday or Monday, only to have to stay for an additional week or more due to blood counts, or infections, etc, etc...

  I have many things of Owen's saved.  I have some clothes, toys, and books. I am not able to get rid of those. If I ever have more children, I would want to share them with them. Additionally, when I have grandchildren, I would want to do the same-read them his favorite books, show them his toys, etc. 

  I wish he were here to tickle! I listened to one of his favorite CD's in the car yesterday and sang along.  How much fun we all had dancing and singing along with Bear in the Big Blue House!!

  Rain today.  The perfect day to watch movies and read, waiting for the rainbow!

He is Gone
You can shed tears that he is gone,
Or you can smile because he lived,
You can close your eyes and pray that he will come back,
Or you can open your eyes and see all that he has left.

Your heart can be empty because you can't see him
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday,
Or you can be happy for tomorrow because of yesterday.

You can remember him and only that he is gone
Or you can cherish his memory and let it live on,
You can cry and close your mind be empty and turn your
back,
Or you can do what he would want: smile, open your eyes,
love and go on.

Toot toot chugga chugga big red car!  We travel near and we travel far. Toot toot chugga chugga big red car, we're gonna ride the whole day long!!

  It's funny how Wiggles songs can pop into my head-they are quite catchy and cheery!  Owen had the opportunity to see The Wiggles twice. I have to admit that I probably enjoyed the shows as much as he did!  Want proof? Here we are with Murray Wiggle--notice who has the bigger smile??  The last show, my favorite dancer, Ben, was there. When he ran through the aisle, right past us, I shouted "I love you, Ben!" Owen laughed and said, "You love that guy!"

  I have the Wiggles as a background on my igoogle screen. Makes me think of the hours and hours of fun we had singing and dancing to the Wiggles!!  Owen is hopefully doing that now, as I am!

It was one year ago today that we learned that Owen had relapsed...so much has changed in a year. A year ago, Owen was happy and carefree.  I was watching videos of him this weekend--he was such a funny kid!  I can't believe what an amazing kid he was-so full of life, humor and fun! (He got it from his big brothers!! Humor is such a big part of our lives, and he rolled right along with that and it was such a huge part of who he was...who he is!)

    Tomorrow, it will be 6 months since Owen died, the last time I was able to hold him...It feels like it has been forever, and like it has only been a few hours at the same time.  That day, time went so fast, from the time he actually passed until the time that PJ came to take him.

  On the 14th, it will be 2 years from when we first took him to the hospital, the 19th, 2 years from his brain surgery...April is one heck of a month worth of memories...both good and bad-April was when we went on the Make a Wish trip that was such a blast last year-Owen had so much fun!!

  Remembering all of the memories--I love and miss you, Owen!

Here is a link to the video that Channel 2 news aired on Owen's journey.  It's almost 7 minutes long!

http://video.aol.com/video-detail/owen-a-courageous-fighter/1372887551

    My friend, Pam, and I went to the Psychic Fair in Buffalo yesterday.  We had gone to Lilydale a few years back-prior to Owen's diagnosis, and have been meaning to go back, but obviously circumstances have not allowed us to do so.

  The woman I had a reading done by was amazing.  Pretty much everything she said was right on.  I told her that I had lost a child in October, and she had me hold a stone and she put her hands over mine. She said, "I'm sensing alot of pressure in his head?" and then "There is a little dog with him..."  It was crazy!!  I have no idea how you feel about psychics, but she had no prior information about me-did not have his name, my last name, how he had died, etc...She said that he does not feel any pain right now (which would be the obvious thing for anyone to say) and then said that he is able to walk and run now (which, again, I had never said that he was unable to walk for the last few months)...

  I finally have been dreaming about Owen-good dreams, where he is with me again.  I love those!

  Remember, our Relay for Life is Saturday, June 13.  If you would like to join our team, it is only $10 to sign up, and you get a tee shirt!  http://main.acsevents.org/site/TR?team_id=442366&fr_id=14019&pg=team

Love and miss you, Owen!

Miss you, Owen

Please Help Support Make A Wish and Relay for Life!

Betty Crocker is generously donating the money to provide one child a week (for twelve weeks) a wish at Make a Wish chapters across the country. Make a Wish of Western New York provided Owen with his amazing wish trip to meet the Power Rangers at Walt Disney World. I am hoping that everyone reading this will take the time to click on the link I am providing and vote for the Western New York Make a Wish chapter each day in honor and memory of Owen, knowing what a dream it was for him-they truly made his wish come true! Please bookmark the site and vote daily!!! Thank you! The top 4 chapters from each category at the end of the 12 weeks will receive the money to provide a terminally ill child with their wish!
http://www.bettycrocker.com/stirringupwishes/Support.aspx

In addition, with snow on the ground and a bite in the air, it may seem impossible to believe that Akron, NY's Relay for Life is just around the corner!! This year, the event is taking place on Saturday, June 13, 2009 from 12 noon - 12 midnight. Again, the Event Location is the Akron High School Track at 47 Bloomingdale Rd. in Akron, NY 14001. I have started a team in honor and memory of Owen named Frogger's Family and Friends. You can find our team home page at: http://main.acsevents.org/site/TR?team_id=442366&fr_id=14019&pg=team
Please join our team, donate in memory of Owen and/or another loved one, and/or plan on joining us on June 13. You do not need to stay for the entire length of the Relay, stop by for an hour or so to show your support, or donate your time before or during the Relay to help raise money, gather baskets/donations for a Chinese Auction, help raise money through bake sales, etc---(feel free to give me ideas since this is my first time being a team leader!!!). Last year was the first Relay that Owen attended--as a survivor. He cut the ribbon at the Opening Ceremonies with my Aunt (also a cancer survivor). It will be difficult without Owen there (physically) with us this year, but I think that walking in his memory is a wonderful tribute to him.
Thank you all for your continued support. There is not a minute that escapes me without a thought of Owen, and there is nothing that I do that is not accompanied with the wish to have him there with me. However, there are moments throughout the day that I am able to hear his giggle, see his eyes twinkle with a smile, and hear him tell me that he "wuvs" me. I certainly have a great emptiness without him-it is like losing a limb. Yet, I continue to be so incredibly grateful to have had him in my life. How incomplete it would have been without ever having him at all...

I wish that this would have all shown up, but I can't figure out how to get it to fit so that it all shows..

  What it is showing is that March 7th is Ice Cream for Breakfast Day in support of Give Kids the World, a village where kids stay witth their families while in Orlando for their wish trip.   Because Owen's trip was a rushed trip (we found out he had relapsed and were in Orlando the following week because the cancer had come back in numerous spots in his brain and spine so quickly), we did not stay at Give Kids the World, however, we did visit daily to eat, ride ponies, play miniature golf, etc.  

  For more information on Give Kids the World or to make a donation, please visit their website at  http://www.gktw.org/

 Let's all show our support for children with terminal illnesses and eat ice cream for breakfast on March 7!!

Celebrate Founder's Day  by having Ice Cream for Breakfast! March 7th, 2009 All of us at Give Kids The World Village are getting ready for our Founder's Day celebration on March 7. Four years ago we started a tradition... encouraging everyone to "eat ice cream for breakfast" to help us celebrate. Whether you were a guest at the Village, share your time as a volunteer Angel, send Wish Children here as a Wish Granting Organization or are one of our treasured partners, you are a special part of our GKTW family. We hope that on March 7, you will start your day off with ice cream and thoughts of the thousands of precious children we have served. Show us how you celebrate Ice Cream for Breakfast Day by sending us your photos. You may even see yourself on our website or our fan page on Facebook! Please send your photos toDream@gktw.org. Our world-famous Ice Cream Palace is open from 7:30 a.m. to 9:30 p.m., so that our Wish children can have ice cream for breakfast every day of the year! Wish Child, Jack enjoys an ice cream sundae with his mom and sister in the  Ice Cream Palace at Give Kids The World Village. A Wish Child's sister, Ruby enjoys some delicious chocolate ice cream in the  Ice Cream Palace at Give Kids The World Village. The staff of Make-A-Wish Foundation of Oregon, one of our partnering Wish Granting Organizations, celebrates Give Kids The World's 2008 Founder's Day with a yummy bowl of ice cream for breakfast!   For more information about Give Kids The World, visit www.gktw.org. To receive the next edition of our online newsletter and GKTW News, please visit our subscription page. [Return to Top]

About Give Kids The World Give Kids The World Village (GKTW) is a 70-acre, non-profit resort in Central Florida that creates magical memories for children with life-threatening illnesses and their families. GKTW provides accommodations at its whimsical resort, donated attractions tickets, meals and more for a week-long, cost-free fantasy vacation. With the help of many generous individuals, corporations and partnering wish-granting organizations, Give Kids The World has welcomed more than 90,000 families from all 50 states and over 65 countries.  For more information about Give Kids The World, visit www.gktw.org. To find out how you can help create memories and hope for children with life threatening illnesses please visit our How to Help section. To receive GKTW News, please visit our subscription page.  Give Kids The World 210 S. Bass Road Kissimmee, Florida 34746 United States

Helping a grieving person: Provide ongoing support

Grieving continues long after the funeral is over and the cards and flowers have stopped. The length of the grieving process varies from person to person. But in general, grief lasts much longer than most people expect. Your bereaved friend or family member may need your support for months or even years.
Continue your support over the long haul. Stay in touch with the grieving person, periodically checking in, dropping by, or sending letters or cards. Your support is more valuable than ever once the funeral is over, the other mourners are gone, and the initial shock of the loss has worn off.
Don’t make assumptions based on outward appearances. The bereaved person may look fine on the outside, while inside he or she is suffering. Avoid saying things like “You are so strong” or “You look so well.” This puts pressure on the person to keep up appearances and to hide his or her true feelings.
The pain of bereavement may never fully heal. Be sensitive to the fact that life may never feel the same. You don’t “get over” the death of a loved one. The bereaved person may learn to accept the loss. The pain may lessen in intensity over time. But the sadness may never completely go away.
Offer extra support on special days. Certain times and days of the year will be particularly hard for your grieving friend or family member. Holidays, family milestones, birthdays, and anniversaries often reawaken grief. Be sensitive on these occasions. Let the bereaved person know that you’re there for whatever he or she needs.

http://www.helpguide.org/mental/helping_grieving.htm

Thinking about Owen makes me smile.  One of the things that made Owen happiest was making other people laugh and smile.  He had such a sweet giggle-would double over laughing, his belly and cheeks shaking.  Hearing him laughing was infectious...you couldn't help but be happy when you were around him.

   One of the things I used to say to Owen was that if I had every single Owen in the whole world and every 4 1/2 year old in the whole world in the same room, he would still be my favorite one.  One of the last videos I have of Owen awake and talking is one of my favorites...He was speaking slower, and taking longer to process what was being said to him. I asked him, "Owen, who is my favorite Owen in the whole world?"  I was about ready to fill in the answer for him because I wasn't sure if he was going to or not, and he spoke up and said "me..."  It made me so happy to hear that he still knew that he was my favorite Owen, as he always will be!!

 Miss you, Frogger!

I hope that everyone has someone to love who loves them back today...love comes in all forms, and need not come from a "significant other".  It can come from your children, your friends, your pets---everyone is worthy of love, and I hope that you all feel that.

My heart goes out to the families and friends of those lost in the plane crash about 3 miles from my house...What a tragedy.

  I love you, Owen.  Even though you are not next to me physically, being apart does not diminish the love that you and I share...Miss You, Frogger!

 

  "A butterfly lights beside us like a sunbeam, and for a brief moment its glory and beauty belong to our world. But then it flies on again, and through we wish it could have stayed, we feel so lucky to have seen it."

  I know how lucky I was to have Owen in my life to love.  He made my world a more beautiful place.  He taught me to notice the little things that I would have passed by before, and see the beauty in everything...While I wish he was still with me physically, I am eternally grateful for the time I did have with him.

   

   I wish I could say that it gets easier with time, but it doesn't...In fact, I dare say that it gets harder.  It is unfortunate that I rarely dream of Owen, either, so I am not even able to hold him in my dreams. I don't understand why my mind, in such pain without him, wouldn't allow me that reward at least.

   I am so thankful that I have been able to meet other parents who have lost their children to cancer.  While I wish that we all still had our children with us, meeting them, having each other to lean on, to talk to (and have them fully understand everything you are saying), to hold each others hands is such a welcome gift.

  

   We all blew out the candles on Owen's cake-and I imagine that we all made the same wish...

 I miss you, Frogger. So much...you made me complete. I feel lost without you...

Anthony said last night that the thing he misses most about Owen is his giggle.  He asked me what I miss. I had to answer "Everything"!

Happy 5th birthday, Frogger Froggerton.  We miss you....help us blow out the candles on your Scooby Doo cake later, ok?