Saturday, February 10, 2018

Saturday, February 10, 2018

Tonight's picture was taken in August of 2005. Mattie was in Los Angeles visiting my parents and together we went to Mattie's favorite museum..... the George C. Page Museum. Or as Mattie knew it.... the tar museum. It got that name because surrounding the museum, are literally ancient tar pits. Within many of these pits they have found prehistoric animals which are on display at the museum. The museum also has an active tar pit where archaeologists work to unearth more rare animal bones. 


Quote of the day: The best way out is always through. ~ Robert Frost

I was flipping through a dog catalog and look at what I found! Not only a tan border collie like Sunny, but next to the photo was the dog's name..... Mattie. What are the chances of this?

My mom and I went on a three mile walk today. It is wonderful to see sun and lovely weather. People in Los Angeles do not realize how lucky they are.... very few cold and gray days here. 

Check out this beautiful bed of Shasta daisies! I love all daisies!

As we were walking, we passed this sight! This car is for sale. Someone needs a better lesson in marketing. After all I can't imagine the average buyer wants a car that says..... Dead and Buried!

Another glorious sighting.... Portalucas! Given that I just came from DC which was in the 20's and gray, seeing greenery in February is definitely so unusual and makes you feel better. 

We are going to Bistro Gardens tonight with my parent's friends. We only go to this restaurant on special occasions, as the setting inside is quite special. In the evening it is a magical setting with trees, live piano music, and twinkling white lights. 

Friday, February 9, 2018

Friday, February 9, 2018

Tonight's picture was taken in August of 2005. Mattie was three years old and visiting my parents. We took Mattie to Griffith Park, one of his favorite places to visit when in Los Angeles. This park had everything from state of the art playground equipment, a train museum with trains kids could run around on, a zoo, a dentzel carousel, and pony rides. I was very cautious with Mattie, and as you can see Peter was walking besides Mattie and this horse. In retrospect, I am not sure what I was worried about as this horse was tied to a turning wheel and couldn't run away even if it wanted to. 


Quote of the day: No one saves us but ourselves. No one can and no one may. We ourselves must walk the path. ~ Buddha

Sunny did not know what was happening in our home this morning. I got up at 4am, in order to make my 7am flight to Los Angeles. Since I am never the first one up in our home, Sunny knew something wasn't right! Well I have a feeling he suspected that when the luggage came out last night. Animals are so sensitive to our routines. 

However, Sunny is a smart puppy! Normally if I am around, he sticks to my side like the lamb in Mary had a little lamb! But when I am not around, Sunny is clever. He knows he has to switch gears and work on Peter. Peter has much better will power than I do. When I see Sunny's big cow eyes, he is pretty good at manipulating me to get treats!

As you can see Sunny did not skip a beat. After my departure, he was thrilled to go on a walk with Peter. But look at that adorable face! I fell in love with that face over the Internet. Remember I adopted Sunny sight UNSEEN! I picked him based on his adorable face and descriptor paragraph!














Typically I don't like flying, but everything about this flight today was perfect. My seatmate kept to himself, there was NO turbulence and the flight crew was lovely and helpful. I honestly never went on a cross country flight that went by so quickly. But then again, I brought a doctoral student's dissertation with me, as I have been asked to serve on her defense in March. I figured being trapped on a plane for five hours would be a good time to start reading this document. I was correct! Her target audience is older adults, which is why her dissertation chair selected me, because believe it or not, that demographic was once my clinical specialty. However, the construct of her study doesn't resonate with me because she is focused on sexual frequency and satisfaction as predicting psychological well being in older adults. I won't get into this study here, but with my experience working with cognitively and physically challenged older adults, sex is not the first issue on their minds. Just managing basic activities of daily living are tantamount. Nonetheless, aspects of the study are intriguing and I do enjoy learning new things that can potentially help others. 


This is what Los Angeles looked like upon decent. It is hazy but still a green sight! Unlike the gray sight I left in DC. 

When I got off the plane, I met a car service to take me to my parent's house. Driving in LA is a challenge and it makes no sense for my parents to drive two hours just to get me. But this is where the adventure began!!! Not in the air but on the ground. 

When I met the driver, he greeted me as if we were long lost friends. I found this odd, but went with it, since he had my correct name and knew what my final designation was. After the greeting, he asked if I was ready to go! I said, NO, I have to pick up my luggage. That was another clue that he wasn't working with a full deck. When we got to the luggage carousel, he started talking to me about his ex-wife, her gambling addiction, how this has impacted his life, and literally this went on for over an hour. He pulled out his phone and I saw photos of his grandchildren and then throughout the car trip I learned more about the dysfunction in his life. Now why I brought this on myself, I have no idea. As I literally said nothing to him when I approached him this morning. But WOW did I get a mouthful. He is now in his 70's and because of his wife's addiction, he needs to continue to work. It was a sad life story, and as he said to me... "I can't believe how one person could destroy my life!" It only takes one bad apple though. 

While he was driving on a very crowded freeway, his phone started ringing. He answered it and then after he hung up, he started text messaging on the phone. It was at that point, I thought we were going to die. He was swerving all over the place and a LA freeway is not a good place to try this! At one point, I was texting Peter asking him if we were even on the correct freeway to get to my parent's home. This driver had me that paranoid, as I truly couldn't determine how disturbed he was. He refused to use GPS, but he also didn't know where he was going. So I pulled out my phone and gave him directions to my destination. 

Typically I would report someone like him immediately, but frankly he seems so unstable, that until I return home next week, I do not want to file a formal compliant. But one is in the making because of his inappropriate behavior, his bad mouthing the company he works for, his getting lost, and text messaging on a freeway. Needless to say, I was thrilled to get out of the car in one piece. 

Thursday, February 8, 2018

Thursday, February 8, 2018

Tonight's picture was taken in February of 2004. Mattie was almost two years old. As you can see Peter caught us in real time..... Mattie fully on and me in the background exhausted! I have to say I had exhausting days trying to keep up with Mattie's physical and mental energy level. But I wouldn't have had it any other way.



Quote of the day: Individual commitment to a group effort--that is what makes a team work, a company work, a society work, a civilization work. ~ Vince Lombardi


One of the things that makes Mattie Miracle work, besides our incredible donors, are our equally incredible volunteers. Some of our volunteers have been with us since the Foundation began in 2009. In fact, our core volunteers are people who helped us in indescribable ways during Mattie's 14 month battle. 

Today, I had a 90 minute phone call with one of our dedicated volunteers. I have known Jane since 2005, when Mattie was in preschool with her daughter. Over the past couple of years, Jane has become more and more involved with the Foundation. In addition to being a significant donor, she also wants to help me find corporate sponsors for our Walk and is also reaching out to local businesses for raffle items. Ironically, it is Jane who taught me years ago how to solicit a local business for a gift in kind, as she was the solicitation chair of our preschool's auction. Back then I volunteered to serve on her committee and had the opportunity to learn some of the process. 

Our Walk raffle is a big production as it requires solicitation of businesses, being organized, staging the items, selling the items and keeping track of sales. This is all on TOP OF THE WALK! Thankfully I have worked with our raffle chair, Carolyn for 9 years now. Carolyn is another mom I met through Mattie, as her daughter was in preschool with him. Seeing a trend here??? It always comes back to Mattie.  

While talking to Jane today about corporate sponsors, she told me about a website called Pinterest. I have seen Pinterest pop up often on Google searches but never paid much attention to it. Well until today! Jane just finished up her school's auction this year and told me that it was Pinterest that gave her some great ideas. So literally while talking to her I went on-line to Pinterest and plugged in the search... "silent auction items." I couldn't get over what I was seeing, all great ideas!!!

So what is Pinterest? Basically it is a site where creative do-it-yourself'ers can go to post their ideas and finished products. You can search on the site using a keyword. In a way, it is like a person's virtual cork board filled with thumb tacked photos of their favorite creations. In any case, I am a visual person and I found this was a great way to get inspired to come up with novel raffle baskets. 

What this also told me is...... there are MANY MANY others out there like me. I really thought it was the only one struggling to create and stage baskets for a non-profit. Wow was I wrong!  

This is a photo of all of Mattie Miracle's raffle baskets featured at our Walk last year! I assure you it is a labor of love!

Now here are some photos from Pinterest today that caught my attention! This is a Smores raffle basket, which is perfect for the Summer. It is well timed with the date of our Walk. 

Every year, we feature a dining around town raffle basket. I just loved this cooking utensil display designed to feature gift certificates!

This maybe my FAVORITE! I love the creative use of a garden hose to make a raffle basket, featuring garden products!

This basket would have resonated with Mattie. First of all, the green frog sandbox was something Mattie loved playing in and I have a feeling all the products featured inside the sandbox, would have captured his attention. They are colorful and I think would attract any kid! 

Wednesday, February 7, 2018

Wednesday, February 7, 2018

Tonight's picture was taken in February of 2003. Mattie was ten months old and fully engaged with his toys. What he was holding was actually a drum. It was a toy that would record what he did and he could then hear his work. Mattie was intrigued with all toys that made noise. I know some parents are bothered by toys like this. However, that never bothered me. The only thing that really got to me was non-stop crying and tantrums. Of which Mattie had many. 


Quote of the day: The world breaks everyone, and afterward, some are strong at the broken places. ~ Ernest Hemingway


For the past two days, Peter has been in NYC. I am happy to report that he is home safely. The day he left for NY, there was a train derailment close to us in Maryland. I don't like flying, but the train is not high on my list either! 

While Peter was away, I had Indie and Sunny keeping me busy. They are actually good company. Which was helpful, because I would say that when one of us is gone, it is very noticeable how empty our home is. We felt this profoundly after losing Mattie. Part of us liked being home and the other part found it difficult. It was truly confusing and disturbing to not have Mattie calling out our names and running around. It was also hard to see his room and his things, and to be living life without him. 

Now 8 years later, I am not sure what is harder. What we experienced the first several years after Mattie died, or now? Now meaning that we have had to adjust to life without Mattie, so much so, that this has become the norm. It isn't normal, and don't get me started with that hateful term, NEW NORMAL. A term coined by social workers, why? I have no idea. Because nothing is normal about losing a child or having to find one's way in the world alone. This loss will never be normal, but our brain and heart learn to adjust and accommodate. Which is frankly disturbing to admit as a parent. I suppose if we did not adjust, the alternative would be that we would stop living. Don't mistake what I am saying, accommodating doesn't mean forgotten by any stretch of the imagination. But accommodating can make one feel guilty.

It was another busy day of Foundation Walk planning, but also trying to develop language for several grants we are targeting. All I know is several hours into writing, I had to walk away to clear my mind. In my case, walking away, means walking with Sunny. Whenever I move from my desk, Sunny is right on my tail, reminding me..... It's time for a walk! Walking in the pouring rain today, when it was raw outside, wasn't my cup of tea, but it is what one signs up for when getting a big dog.  

Tuesday, February 6, 2018

Tuesday, February 6, 2018 --- Mattie died 438 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was home in between treatments. As you can see Mattie was the ultimate multi-tasker. He was sitting on the floor doing water play. In one hand he was playing with his car and in the other was eating a rainbow sprinkled vanilla frosted donut. Mattie LOVED donuts, especially while on treatment. Since Mattie showed little interest in eating, we made sure he always had access to whatever he wished to eat. Regardless of what it was. This scene on the floor of our dining room was a typical occurrence! Cancer or pre-cancer, Mattie loved to do crafts, and water and clay play on the floor of our dining room. 


Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. ~ Vincent van Gogh

I forgot to post this photo of Sunny on the blog yesterday! This is classic Sunny! When you are not paying attention to him, he can sulk and look depressed. In those moments he takes to the couch or a bed. Truly he is one emotional beast, which I am sure was TOO much for his previous owner.

But there are aspects of Sunny that remind me of Mattie. Naturally I know one was human and the other is dog, nonetheless. I was talking with a friend today who lost a close friend to cancer. She was saying that in the Buddhist culture it is believed that the spirit of someone who died, remains on earth for a month or so, to help comfort those left behind. A rather touching notion, no? 

I know there really is no answer to the question... is there life after death? Certainly philosophers and religious scholars may debate this question and have different answers! But in the end we are left with the choice to come to our own beliefs and conclusions. Prior to losing Mattie, this whole discussion would have been the furthest from my mind. But I do think there are some losses that leave your world turned upside down and looking for north (a compass reference, to help you know where you are). 

My friend today is not Buddhist but she loved the visualization that her friend's spirit maybe around her. It's an interesting notion. I know after Mattie died, things happened that I can't physically explain. Nonetheless, I am not delusional and know what I saw and heard. Both episodes happened in my car. One day, I entered my car and I found the front passenger seat all the way down. Which is what I used to do with the seat to accommodate Mattie when he was in my car after surgery. Putting the front seat down allowed Mattie to stretch out his casted leg from the back into the front. However, I only arranged the seat like that when Mattie was alive and recovering from limb salvaging surgery! So the question is how did the seat get put into this position when myself and Peter never touched it!!!????? To this day, I am still stunned. It isn't like someone could have controlled the seat from outside the car. It had to be manually moved from inside and NO ONE had my keys or drove the car that day. 

I took the playing of my car seat as a sign from Mattie. In fact it was down right eerie! That was the first episode. The second episode happened while I was driving. I had the radio off. NO noise in the car. Yet while I was driving the radio turned on all by itself and what was it playing??? Try Dancing Queen, the ABBA song that Mattie always did his physical therapy to! In fact everyone at the hospital knew Mattie was coming down the hallway. They heard him first before seeing him. People would come out of their offices to find out where the music was coming from. When they saw it was from Mattie and his physical therapy entourage, people usually cheered him on! 

I can't logically explain the seat movement or the radio turning on by itself. Perhaps there is a scientific reason for both incidents. But I am sticking with the notion that Mattie was with me and trying to send me a message. Early on when Mattie died, I had great fear that in death he was still suffering and would be lost without me. Of course none of that makes sense, but grief isn't always logical. I needed those two signs and took them seriously. Which is why when my friend told how she felt today, I told her anything is possible. As long as you are open to experiencing the signs from our loved ones.  

Another cold gray day today! But my friends the Canadian Geese were out by the water front. They maybe a messy bird, but they are loyal and travel in packs. They are the highlight of the winter for me. It is wonderful to see them despite the temperatures. Of course, Sunny is very intrigued by them and would like to chase each one into the water! By the way...... the boot to protect Sunny's foot that was injured over a week ago, hasn't slowed him down at all. He is walking at a full clip again!!! 

Monday, February 5, 2018

Monday, February 5, 2018

Tonight's picture was taken in May of 2009. I remember this photo very well. I had gone home the night before to sleep. Typically I always stayed in the hospital at night with Mattie and Peter. But I was absolutely worn out and needed to sleep. I came back the following day, and Mattie was thrilled to see me. If you notice, I was wearing a HOPE necklace. I will explain more about this necklace below!


Quote of the day: Hope is the thing with feathers 
That perches in the soul 
And sings the tune without the words 
And never stops at all. ~ Emily Dickinson

I can't believe I NEVER explained the story of the HOPE necklace on the blog! EVER!!! I wore this necklace around the clock for over 14 months. This necklace meant a lot to me, which is why I am stunned I never wrote about how I got the necklace and its significance to me. I went back through the entire blog, using a search feature, and found nothing as it relates to this necklace! 

I chalk it up to being overwhelmed back in August of 2008 (a month into Mattie's treatment). I wasn't thinking clearly, and therefore missed sharing about this important gift. 

So I am taking you back in time, using my memory to recall how I got this necklace. This moment in time is SO real to me, so even though the story may not be in print, it is forever etched in my mind. 

I don't know the exact date, but I do know that by August 22, 2008, I was already wearing the above HOPE pendant. But why? This was NOT my necklace, so how did I get it? 

As Mattie was diagnosed and our world was falling apart, two friends decided to take on the role of co-leader of Team Mattie. Team Mattie became an incredible network of people (from our work, home, schools, etc) who delivered us meals daily, brought Mattie toys, treats, and gifts weekly, and truly if we needed something it was done. One of our co-leaders was Alison. 

One day Alison came to visit Mattie and I in his hospital room. Room visits were always challenging because the space was small and emotions were always high. I distinctly remember sitting down talking to Alison (who has a great sense of humor and played with Mattie very well) and while talking to her, I noticed and commented on the beautiful HOPE necklace she was wearing. The details are sketchy in my mind, because we may have even been talking about the need for hope given the crisis we were living. In any case, Alison told me that her middle name is Hope and that someone gave her this necklace knowing that Hope was part of her name. The next thing I knew, Alison took the necklace off of herself and put it on me. It was so symbolic, because not only was she literally giving me hope, but she wanted me to know that I wasn't alone while going through this with Mattie. That was a major gift to receive, as cancer can be very isolating. Alison suggested I wear the necklace daily as a reminder. 

Which I did! The necklace remained on me until Mattie died. After Mattie died, I told Alison that I thought she should have her necklace back. Her response was no! She actually wanted me to pass along the tradition of giving the necklace to someone else who needed hope while battling cancer. To this day, this necklace sits in my jewelry box, and I frankly can't part with it. To me it is a symbol, much greater than the word written upon it. The necklace is a constant reminder of the amazing network of people who surrounded us for over a year. It was through their support, I had HOPE. 

In fact, since Mattie died, I have found that several of my friends are coping with their own cancer diagnosis. Given my own experience with a HOPE item, I have tried to always give my friends an item with the word HOPE on it. But moving forward I may change what the item is!

So now fast forward to today. Here I am pictured with my friend Margy and her husband Ken. Margy was diagnosed with stage iv ovarian cancer on January 24. 

One of the things I passed along to Margy was a HOPE necklace of her own. I told her the story of my necklace and what it means to me, and I had a feeling the whole notion would resonate with Margy. Because prior to getting cancer, Margy ran a childhood cancer non-profit for twenty years called Growing Hope.  

A hopeful smile after getting a HOPE necklace. One day, I will reconnect with Alison and share with her that the tradition is alive and well!!!

Sunday, February 4, 2018

Sunday, February 4, 2018

Tonight's picture was taken in May of 2002. Mattie was one month old. But look at his expression! Mattie was very alert, tracking me with his eyes, and absolutely curious. To me this photo is priceless. That week I took hundreds of photos of Mattie, because I was looking for the right photo to put on the front of his birth announcement. I did not select this one, but it was a photo that was as equally intriguing!



Quote of the day: No one cares how much you know, until they know how much you care. ~ Theodore Roosevelt


On Wednesday's blog I posted an article entitled, "Does Medicine Overemphasis IQ." That evening I happened to also post the article to my Facebook page. I have been intrigued by several of the comments people gave me in reaction to my posting. 

Frankly, it never dawned on me that writing this blog and sharing my story about Mattie has actually inspired other people to advocate for their own medical care, or the care they are providing to an adult loved one. When I posted the article to Facebook, I got two noteworthy comments. Comments that have remained with me. 

I have copied the comments below. I figured both authors wouldn't mind me sharing their writings here, since they submitted them to me in a very public forum (Facebook). I am reading a book now, that has absolutely NOTHING to do with this certain topic. The only reason I bring it up, is the main character in the book is reading a stranger's blog on the internet. The blog author poses a question to the internet ether....... is anyone out there? Which really means..... is anyone reading her words and understanding her thoughts?

Any case as soon as I read, 'is anyone out there," it immediately resonated with me. This of course is the limitation with writing a blog! You don't know if anyone is out there, is anyone reading, and most importantly is what you are writing making an impact?   

Then of course, along came these two messages. Messages not posted on the blog, but to my Facebook page. The messages were written by women I have never personally met, yet both are Foundation donors. They do not even live in my region! However, they credit reading the blog for giving them the courage to advocate when competent and compassionate care isn't be provided. In one comment below you can see that the author specifically says that she "thanks a boy named Mattie." 

Part of Mattie's legacy is to help others learn from what he endured. In turn I try to use that knowledge to guide the Foundation's mission so that comprehensive cancer care includes psychosocial care. Yet in all my blogging and advocating, I did not make the conscious connection that what I have been discussing on this blog over the last 9 years is applicable to everyone. Anyone seeking medical treatment will run into many of the same hospital issues...... gruff staff members, miscommunication, insensitivity, mismanaged pain control, and no coordination of care among different specialists. 

I can't thank Dianna and Cheryl enough for sharing their thoughts with me and for letting me know THERE IS SOMEONE OUT THERE and people are listening! Listening and learning from Mattie's story, which to me is important because there has to be a purpose for all the suffering Mattie endured.  

Message from Dianna:

This message is from one of our loyal Foundation supporters. I never met Dianna. She lives in Louisiana and she got connected to us through Mattie's blog............................................................... 

Oh Vicki! I wish that I could give you a hug. My mom is in the hospital, and she had an awful day. In a word, she has been treated cruelly. In the past, we would have just been silently furious when the highest ranking staff member we could talk to did not call us back and ignored multiple calls. 

I thought about this post and Mattie and your mission, and it empowered me to research to find the email addresses for the Hospital CEO, Chief Financial Officer, Chief Nursing Supervisor, and Administrator. I sent them a very detailed email directly this evening. Within 20 minutes, the Nursing Supervisor who replaced the one who ignored me, called me and was very compassionate. He assured me that our frustration was justified and said the hospital was completely in the wrong. He also said that one of the head people I sent the email to would call me in the morning. 

When I called my dad, who was treated very poorly by staff all day, and knows nothing happens on Saturdays in the hospital, he was shocked and beyond relieved at the response we received. I told him, “You can thank a boy named Mattie for that.” 

I know that your primary goal with Mattie’s Foundation is to serve kids battling cancer. But, I hope you know that this legacy you are creating for him branches out and touches folks even not facing childhood cancer in a deep and profound way. From the bottom of my heart, thank you. I will pm you the letter. It’s pretty long, with a lot of medical stuff, so please don’t feel obligated to read it all. I just wanted to show you, in writing, just what Mattie is accomplishing. Gigantic Hugs!

Message from Cheryl: 

This message is from Cheryl. Cheryl is our cousin, on Peter's side of the family. We never met one another as she lives in Missouri, but we have many things in common. Our sons have the same birth date and her dog is also named, 
Sunny!..............................................................

I finally had a chance to sit and read this article. I completely agree with it. I loved how Dianna stated that you and Peter are creating a legacy far beyond pediatric cancer patients' psycho-social needs. You are creating a legacy for all of us with our own doctor/patient interactions. Mattie is such a bright sunshine spot for all of us! One of my best friends was just diagnosed with breast cancer this past week. She is currently interviewing surgeons. I am encouraging her not to just look at their credentials, but to see how they interact with her one-on-one. I'm praying she finds the right doctor who will treat her as a whole person and not just a disease.