Saturday, March 25, 2017

Saturday, March 25, 2017

Tonight's picture was taken in July of 2002. Mattie was three months old and sitting in his favorite place.... his car seat. Don't ask me why Mattie loved his car seat, but he did. He preferred it over a stroller and don't get me started about a crib. Mattie HATED his crib. He despised it so much that for the first several months I put the car seat in the crib and let Mattie rest in his car seat/crib! What I love about this photo, was Mattie's dreamy look. A look that he always got right after a bottle. 


Quote of the day: Spring is the time of plans and projects. ~ Leo Tolstoy


Tolstoy was absolutely correct. Today was 80 degrees in DC. We had the windows open, we opened all the boxes that came to us for the toiletry drive, and then I got inspired to have us work on cleaning our deck and getting it ready for spring. In addition, we moved all our plants from inside to out. So between the clean out and migration of plants, we were at it for HOURS! 

I ordered Sunny a Sherpa type crate liner for when he boards next week. As soon as I took it out of the packing box, Sunny walked to it and claimed it! I am glad he likes it and hopefully it will remind him of home while we are away. 

This is the final product after hours of clean up. Between picking up leaves and debris, our perennials needed to be cleaned out and cut back. Then of course everything needed to be hosed off. We went through about four or five garbage bags of debris!

Last year, we bought a canna lily. Since last year, the plant has grown exponentially. It has been inside all winter, but now it is thrilled to be back outside. 

Friday, March 24, 2017

Friday, March 24, 2017

Tonight's picture was taken in July of 2002. Mattie was three months old and VERY alert. Mattie was born ON and only had two modes.... on and off. There was nothing in between. Mattie did not love being on his back, nor did he like tummy time. He detested it altogether. The pediatrician kept telling me the importance of some time on his back and tummy, so I tried to play with Mattie on this colorful caterpillar mat a little each day, but it never lasted long. Mattie preferred to be upright and moving. 


Quote of the day: No matter how little money and how few possessions you own, having a dog makes you rich. ~ Louis Sabin


The article below is worth reading. The Weipperts lost their daughter Grace to cancer. After Grace's death, her father took two days off from work to cope with the emotions of such a traumatic loss, but then went right back to work. Mainly because there is no bereavement policy in the work force. The Weipperts want to change this so that parents who lose a child can take up to 12 weeks off of paid leave to care for their physical and psychological needs.

I am not always a fan of more legislation, but in this case, it is necessary. Necessary because for the most part society doesn't understand how overwhelming the death of a child is on every aspect of a parent's being. Not that 12 weeks is going to solve the problem, but parents do need time away from other stressors to cope so that they can try to move forward with this loss. 


FMLA Bill Would Require Child Bereavement Leave:
https://www.shrm.org/resourcesandtools/legal-and-compliance/employment-law/pages/bereavement-leave-requirements.aspx

Peter took Sunny to work with him today. The ironic part about all of this is that people at work want to know when Sunny is coming in. Frankly it appears they want weekly visits by Sunny, as they enjoy his companionship! Today another doggie was also at the office. This doxie's name is Baguette! Cute, no?

Sunny and Baguette have become friends and pal around the office. Here they are playing with a tennis ball in Sunny's mouth!

Sunny up close! Sunny practically begs Peter each morning to take him to work with him. I think Sunny loves the walk back and forth with Peter, along with the constant stimulation within the office. 

I entitle this, "Friends sharing secrets!"

Sunny is a very calm and patient dog. No matter what is thrown at him, he always remains calm and cool, and this does impact the behavior of other dogs. 

Thursday, March 23, 2017

Thursday, March 23, 2017

Tonight's picture was taken in July of 2002. Thank goodness for Shutterfly. It is an on-line photo system that stores all of our photos. For some reason I can't find many of the electronic photos I stored on my computer. Not even in our back up folders. Thankfully when I went to our Shutterfly account, I was able to download many of the wonderful baby photos we took of Mattie. This is one for example. When Mattie was a baby he looked more like Peter. It was only when Mattie became a toddler, and certainly as preschooler, did he look just like me. Mattie was three months old in this photo..... but look how alert he was!!! As I always said, Mattie was born on and did not want to miss out on anything, which was one of the reasons he never napped. 


Quote of the day: All truly great thoughts are conceived while walking. ~ Friedrich Nietzsche



Not that I wasn't aware of this already, but my life revolves around walking. I live in the city, which means walking is involved, I have an active dog who needs constant walking, and a lot of the work I do for the Foundation entails walking, carrying items, and MORE walking. After meeting with the doctor two days ago, I was disillusioned, especially since arthritis isn't something that improves with time. Given how awful it has been to even put shoes on, I have been worrying about my overall quality of life. 

In any case, despite how I feel, I keep moving. I have learned for the past 15 years how to live with daily chronic headaches and migraines. So I have a lot of experience with pain, but on top of that I am dealing with fibromyalgia and arthritis now. It's quite a combination. When I sit back and assess all of this, what I deduce is a lot of issues have arisen for me since Mattie's death. In a way, experiencing this trauma and loss has aged my body internally. People may look at me and think I am fine, but my battery of issues do say otherwise. 

There were times today, I wanted to say.... nope I am not doing this! But I did not give in an listen. Instead I went about my chores and even walked Sunny. While out with Sunny today, we bumped into several of our neighbors. It was like a block party, without the party. So this was a positive diversion, which once again I would never have had WITHOUT walking. 

Wednesday, March 22, 2017

Wednesday, March 22, 2017

Tonight's picture was taken in April of 2002. Mattie was about ten days old. Despite how we were taught and told to wrap Mattie up (swaddle), Mattie absolutely hated it. He did not like to be restrained. As you can see his arms broke free from the wrapping and minutes later the feet would be out too! He was a precious sight and it is hard to imagine such a healthy looking baby could get cancer and die. 


Quote of the day: The most critical time in any battle is not when I’m fatigued, it’s when I no longer care. ~ Craig D. Lounsbrough


Today was literally a catch up day for me and the Foundation. I was glued to the computer processing donations with acknowledgment letters for most of the day. Of course there were Sunny walks. Despite how I feel, there are always Sunny walks. I can tell when he needs to walk because he starts pacing around. It is down right impossible to concentrate when he is pacing! So we walk. I did see a doctor about my feet yesterday, only to learn that I have early stages of arthritis in my feet. Not what I wanted to hear, since I already have a very full plate of medical issues. Part of me wonders whether I have inflammation from all the walks I do with Sunny, or did the walking just speed up an inevitable process? I won't know, but I do know pain. Of which I have been having in my feet for over a week. We take our feet for granted until they aren't working well. But I do a lot of walking, and like to walk, so this is a very hard reality. 

Meanwhile, Peter and I had a phone call today with the leadership of the Association of Pediatric Hematology/Oncology Nurses (APHON). We are no strangers to APHON, since they were the first professional association to endorse the Psychosocial Standards of Care and in the Fall of 2016, awarded Mattie Miracle with an achievement award. Now APHON would like to work with us on establishing Mattie Miracle evidence based psychosocial standards implementation research grants with their association. We are very excited about this opportunity, to work with APHON, and to support such implementation research. Because at the end of the day, Mattie Miracle is looking for data and supportive care models that advance the practice of the standards in order to help children with cancer and their families.  

Tuesday, March 21, 2017

Tuesday, March 21, 2017 -- Mattie died 392 weeks ago today.


Tonight's picture was taken in March of 2007. Mattie was almost five years old here, and in preschool. After school we spent time out on the deck and as you can see Mattie captured all the snow that fell and made little castles with it! This was classic Mattie, because after building with sand or snow, he always wanted to decorate his creations. Usually with something found in nature. 






Quote of the day: The only thing that overcomes hard luck is hard work. ~ Harry Golden


Mattie Miracle wrote a psychosocial chapter for a sarcoma book about a year or so ago. Now that the other authors have finished their chapters, the book is set to be published this year. Very exciting because all the other chapters are on medical care, which is why this psychosocial chapter is such a crucial addition. In any case, I spent several hours proofing this chapter, and since it was written about a year ago, several things needed to be updated as it related to the Psychosocial Standards of Care.  Once the book comes out, I will try to share my chapter with my readers. 

Meanwhile, Sunny and I went for a walk this afternoon. He chased a squirrel right up the tree. You can see him in the center of the photo. 

Sunny waiting for the squirrel to come down!!! If I did not hold Sunny tightly on the leash, there would be many dead squirrels in our neighborhood! 

This was the sight in our kitchen today at dinner time. Who says cats and dogs can't be friends? I really think these two enjoy each other's company at meal times.

Monday, March 20, 2017

Monday, March 20, 2017

Tonight's picture was taken in April of 2002. Mattie was just born and home from the hospital. Look who was on the couch overseeing the process? Our calico cat Patches! Patches was a true member of our family. She found us literally, as she wandered from the street onto our deck. Shoot in the paw with a BB gun. Patches came to us a mess, but grew into a beautiful cat, who we had for 16 years. When Mattie was born, Patches just understood that she had to behave and watch over Mattie. Even when he pulled her tail and chased her as a toddler, she was patient and never hissed or scratched. Mattie became a preschooler who was very protective of Patches and taught his friends how to interact with a cat, if they weren't familiar with cats. Patches was a loyal and loving companion who we remember today, on the fourth anniversary of her death. 

The beauty of Patches! Four years ago we had to put Patches to sleep because of her progressive bone cancer. Can you believe it? Bone cancer, the same killer that took Mattie from us.  

Patches ashes remain with us, in a beautiful wood box. She meant that much to us. 






Quote of the day: There are some things in this world you rely on, like a sure bet. And when they let you down, shifting from where you've carefully placed them, it shakes your faith, right where you stand. ~ Sarah Dessen


I was in the car with my friend today, as we were running chores. In the midst of chatting, her cell phone rang. She answered it and I could hear screaming on the other end. It was a person who claimed to have kidnapped her daughter and wanted my friend's attention and money. He even put a young girl on the phone for us to hear. The girl was hysterical and screaming for help. The kidnapper said that if my friend didn't comply he was going to cut all of her daughter's fingers off. 

I have to tell you this was a very disturbing phone call. I wasn't even thinking straight because if I had been, I would have called her daughter with my cell phone to verify that she was okay. My friend knew about the virtual kidnapping scam, but nonetheless, right after the call, she contacted her daughter. Who fortunately was find! I then grabbed my friend's cell phone to look at the number of the person who called her. It was a number out of Mexico (I am reporting what showed up on the phone). In any case, I then called 911. Naturally 911 knew all about the hoax and said there was NOTHING they could do about it. They could only help if the child was really kidnapped or if money was transferred. 

This whole incident has stayed with me all day. It really made me uneasy and truly disheartened to think two things..... 1) there are people out there pretending to kidnap children to get money, and have no regard for human life and how this news will affect parents on the phone, and 2) that there isn't anything that local law enforcement can do about this crime. It leaves me perplexed, further disappointed with humanity, and truly wondering about the state of our world. 

I found the article below that highlights the virtual scam in the DC region and what I do what to say is that if this happens to you or someone you know, it should be reported to your local FBI office. 


Reports of virtual kidnapping scams pop up in region:

http://wtop.com/local/2016/05/reports-virtual-kidnapping-scams-pop-region/

Sunday, March 19, 2017

Sunday, March 19, 2017

Tonight's picture was taken in April of 2007. We took Mattie to Luray Caverns in Virginia. This commercial cave is a trip to remember. Mattie loved it and managed through most of the tour, until we got to the big Great Stalacpipe Organ. An organ that makes it sounds by mallets hitting 37 naturally formed stalactites. The sound is truly overwhelming, loud, and it seems to shake the entire cave. At which point Mattie headed right to Peter to be picked up! Mattie was a lot braver than me, because even as an adult, going into a cave is not fun or natural to me.  



Quote of the day: Everything yields to diligence. ~ Thomas Jefferson



I feel like Peter and I live by Jefferson's quote. One thing we are as it relates to the Foundation, and that is diligent. There are NO down days, no days when we are not working on a Mattie Miracle project, returning emails, processing paperwork, and so forth. I do believe that it is this diligence and hard work that has gotten us where we are today. 

But sometimes this pace is hard to manage. I have forgotten what weekends are like when you get out, have plans, and do something other than working. This is definitely one of the side effects of losing a child to cancer. You need to fill this immense void in your life, and for me, the way I have learned to cope is through the diversion of hard work. When Mattie was alive, occupying his time, finding things to stimulate his very active brain, and participating and socializing with the world around us described our weekends. I am quite sure that without Mattie in my life, I wouldn't have experienced Luray Caverns, metamorphosis with tent moth caterpillars, or digging for sharks teeth at Calvert Cliffs to name a few. When I hear what my friends are doing with their children on the weekends, it is hard to take. Mainly because I feel like they are part of the world and continue to experience it whereas I am interacting with it in quite a different way. 


This afternoon, Peter and I took Sunny for a walk. Thank goodness for Sunny, because otherwise, especially in the cold, I wouldn't be moving from home. Look at this lovely spring garden we passed along our journey. It did not feel like spring outside, but with all these pops of color, one would think otherwise.