Saturday, December 15, 2018

Saturday, December 15, 2018

Tonight's picture was taken at a friend's birthday party in January of 2009. Mattie was invited to celebrate her 7th birthday. Mattie handled the party rather well considering there were a lot of children, noise, and a good percentage of people he did not know. Nonetheless, Mattie got into the spirit of the fun with face painting, games, and crafts. In my mind, Mattie and his friends will always be 7, the age that Mattie died. Yet, the reality is that Mattie's friends are turning 17 years old and soon will be graduating from high school. It is hard to believe that Mattie (as did we) missed out on experiencing elementary, middle, and high school.   




Quote of the day: The best thing one can do when it's raining is to let it rain. ~ Henry Wadsworth Longfellow

Longfellow's quote made me laugh when I read it. Washington, DC has been inundated with rain since this spring. I will never forget that our Annual Walk in May was the ONLY sunny and non-raining day in that whole month this year. 

I can't take it..... as it is another wash out of a weekend. Non stop rain, that is depressing to see and makes you want to never leave home.

Sunny and Indie are now in boarding care, as we leave tomorrow. It is always hard saying good-bye to our pets and poor Sunny, he is such an emotional and anxious beast. He takes boarding much harder than Indie. Indie is truly easy going and appreciative of whatever you give her. 

Sunny doesn't visit Dogtopia often, as I never put him in daycare. However, the staff know him because this is where he stays when we travel. When we walked in the door today, Sunny got a big greeting from a staff member. She knew exactly who he was. I find this interesting because the last time Sunny was there was in June. But I do think Sunny is a memorable and loving fellow and I am happy that the staff have his number. They also know that he goes on a hunger strike while we are away. This time I even provided tupperware filled with cooked ground beef and ground turkey, to have with his meals while we are away. In hopes that he will eat! 

As Peter reminds me, if it weren't for me, Sunny would have been euthanized. As he was 5 years old (most people want to adopt puppies) and though his adorable face was being advertised, no one wanted to adopt him. Until I came along. I fell in love with Sunny through a Facebook posting. I just knew he'd make a great family dog and he hasn't disappointed! 

Friday, December 14, 2018

Friday, December 14, 2018

Tonight's picture was taken in December of 2003. Mattie was in Los Angeles visiting my parents for Christmas. But Mattie was the boy in constant motion. He explored every aspect of my parent's backyard! Outdoor time for Mattie was crucial as it helped him expend energy and take in new experiences. If you look closely, Mattie had pulled out rocks from the planter bays. He then lined up the rocks on top of the bricks and was sorting and playing with them. 


Quote of the day: The reason why we struggle with insecurity is because we compare our behind the scenes with everyone else’s highlight reel. ~ Stephen Furtick



I have been having a hard time with our local CVS. Either prescriptions were unable to be placed by doctors (because the phone line wasn't operational) or I would get automated calls from the pharmacy saying scripts were ready to be picked up. Yet when I would show up, there was no script there, and CVS had  no record of a doctor's order. This debacle has happened three times already, and that is three too often. Especially when you are ill and need things filled without a hassle. 

I received a call yesterday from CVS, telling me that my script was ready for pick up. My doctor's office called as well, letting me know that they sent the script in. So that was two confirmations! Today, I went to pick it up and guess what..... it wasn't there and the pharmacy had no record of the doctor's call or script. YET AGAIN! On November 8th, at around midnight, I called my doctor. I was feeling awful and it did not help that I woke her up and she wasn't happy with me. However, her frustration grew as she couldn't get through to CVS to provide a script for me. I was literally besides myself when she told me, because when you are in pain, you need relief asap. 

Today I had a conversation with the CVS manager about my three experiences. The store was busy, as it is the holiday season, but the manager really dealt with my needs and that of other customers very professionally. In fact, she felt so bad, that she comped my entire order today. She encouraged me to reach out to the 1-800 feedback number of the corporate CVS. I have to admit I was leery about doing this, as I figured NO ONE was going to listen much less care about my feedback. 

Thankfully, I tried calling and I was connected to a wonderful representative. Cassandra first asked for my name, phone number and address. Then I filled her in about the issues I was having and she attentively listened to all of my stories and experiences. She was very concerned about what I was reporting, especially the haywire phone system that I and my doctor have experienced on multiple occasions. In any case, the regional manager is expected to report back to me in two days. Of course, I do not know what the outcome will be or whether they will proactively correct the phone issues, but so far the experience went so much better than I thought. I realize not everyone will speak up, but having access to medical care and pharmaceutical support are crucial to me, and when such access is impeded it makes me nervous. If I am having these issues with CVS, so are others, and if my calling can improve service for myself and others, then it was worth all the talking. 

Thursday, December 13, 2018

Thursday, December 13, 2018

Tonight's picture was taken in December of 2003. Mattie was visiting my parents for Christmas. Since it took Mattie days to get on California time, we were always up VERY early the first couple of days after we arrived. Try 4am! In any case, Mattie had this lovely room to escape to, where we kept him very busy. Mattie rarely sat down, but why I captured this photo was because this TV show, called Oobie, which was on the Noggin channel was a Mattie favorite. So much so that it 

stopped Mattie in his tracks and we went close up to the TV screen to examine the  characters. Why? Well the characters were cleverly done as they were literally hands talking. 








Quote of the day: Grief is never something you get over. You don't wake up one morning and say, 'I've conquered that; now I'm moving on.' It's something that walks beside you every day. And if you can learn how to manage it and honor the person that you miss, you can take something that is incredibly sad and have some form of positivity. ~ Terri Irwin

I received a holiday email from a local non-profit, who specializes in meeting the supportive care needs of those in the Washington, DC area dealing with grief and loss. I knew about this organization and its reputation way before I even gave birth to Mattie. 

If you want me to tune out almost automatically, then you supply me with a how to list. I admit I am not wild about how to lists period, regardless of the subject matter, but when it comes to grief and loss, I truly can't stand them. I typically find them too prescriptive and trite. 

The list you see on the left, is definitely more thoughtful, flexible, and open. But its down fall is it seems time specific (e.g., REMEMBER that this holiday will be different than ones in the past). Specifically geared to those who maybe dealing with the upcoming holidays for the first time after the death of a loved one. 

The first Christmas (let's say) after losing a loved one, people around you may definitely be open to communicating with you about how much you can handle and what you may want to participate in with others. 

However, as the years go by, such a list is not only unhelpful, but such factors aren't even on the radar scope of others around us. In their minds, we survived the worst (holidays during the first year) and therefore we can manage. In a way, things return back to normal. Well not normal for the bereaved individual but normal for those around us. 

What surprises me is this holiday greeting was sent out by an organization that is supposed to understand and respect grief. Yet how does such a greeting apply to someone like myself who is 9 years into child loss and counting? What I would have loved to see in this list is the simple opening statement reflected in tonight's quote..................... grief is never something you get over. NOW that is honest and such honesty is needed in our society as it relates to grief. It is hard enough to cope with the actual loss, but when societal expectations, myths, and platitudes are added to the mix, it further compounds the loss and makes us feel isolated, misunderstood, guilty, and hopeless.  

Lastly, the PLAN ahead portion of this list troubles me. It would bother me regardless of the loss being new or sustaining. Planning is the exact problem...... we can plan and think through what might be upsetting, or what strategy to use if we find ourselves becoming upset. But here's the thing, what catches us off guard are things that WE DID NOT plan for, and with human interactions you can't possibly imagine every scenario and how to plan for it. It is the unexpected triggers and thoughtless comments that wreck havoc and can provide great instability to us. These comments and triggers are like tidal waves, that we have to learn to navigate in order to come up for air and survive. I think the problem with saying PLAN ahead, is that it sets up a person for failure. Because 9 out of 10 times, it is the unexpected that causes great pain. When we are faced with the unexpected scenario, it isn't uncommon for the bereaved person to blame one's self, as being ill prepared and for not having thought and planned ahead. So now we are dealing with grief, anger, and guilt wrapped up into one. Which is why planning ahead, though designed to provide empowerment and control, can actually do the exact opposite.  

Wednesday, December 12, 2018

Wednesday, December 12, 2018

Tonight's picture was taken in December of 2003. We took Mattie to Los Angeles to celebrate Christmas with my parents. My mom put up a tiny tree just for Mattie. He absolutely loved decorating it and playing around it that Christmas. 





Quote of the day: It’s probably both bad and good for the brain, depending on the individual and his or her viewing habits. Many people who are socially isolated, as a result of abuse, personal quirks or developmental differences such as Asperger’s syndrome, establish social networks through their screens that would be impossible to find in person. ~ Benedict Carey


Whether you listen to the radio or the TV, we were all inundated with this week's latest research on screen time and the impact on children's brains. In a nutshell, the National Institutes of Health have financed a $300 million project that hopes to reveal how brain development is affected by a range of experiences, including substance use, concussions, and screen time. The study seems to indicate that heavy screen use (how ever that is defined) was associated with lower scores on some aptitude tests and accelerated cortical thinning. Which the article goes onto explain that this is a natural process in some children (even without screen time!).  

Whether you read the whole article or not, the bottom line is VERY LITTLE is known about the human brain, so you can be sure there is no definitive answer on how the brain could be potentially changed by screen time. The article asks whether screen addiction changes the brain and the author's answer is ............. Yes, but so does every other activity that children engage in: sleep, homework, playing soccer, arguing, growing up in poverty, reading, vaping behind the school. 

I am not sure that any of this information is particularly helpful to parents today, and yet I realize $300 million dollars is being spent on this longitudinal study. The research seems very focused on the anatomical/biological changes that screen time may cause the brain. Interesting! But how could these changes impact behavior? Or simply put how does screen time influence one's personality, cognitive, and emotional development? 

I don't need an NIH study to illustrate to me the detrimental impact technology is having on the next generation. You don't have to go much further than looking at your average teenager. As most of them are unable to make eye contact, to engage in communication, to even show interest in neighboring conversation, and the list goes on. This disengagement from what ultimately makes us human will not only have negative consequences on the future prospects for these teens, but unfortunately the consequences will also affect the strength and health of our society in the long-term. 


Is Screen Time Bad for Kids’ Brains?
https://www.nytimes.com/2018/12/10/health/screen-time-kids-psychology.html

Tuesday, December 11, 2018

Tuesday, December 11, 2018 -- Mattie died 482 weeks ago today.

Tonight's picture was taken in December of 2003. Mattie was in Los Angeles visiting my parents for Christmas. Mattie fell in love with my parent's fruit trees. He loved picking oranges, lemons, and grapefruits. Though picking was fun, sorting by shape and color was much more appealing. Literally Mattie could do that outside for hours. He was my little Farmer Brown!


Quote of the day: The best therapist has fur and four legs. ~ Goldenstars

There is some truth to tonight's quote. No matter what kind of day we have, Sunny is always thrilled with us. Wants to be around us, is eager to be close and part of the family, and simply exudes happiness to have us in his life. 

This evening, I mentioned to Sunny that he got a Christmas present from a friend. It was as if he knew I was talking about him and he seemed to understand the notion of a gift. I put the gift bag down and sure enough his snout was in the bag exploring. Sunny got a squeaky donut. He had a ball playing with it. It is these simple moments in life that I try to reflect on and celebrate. I am so happy Sunny is in our life, as he brings the outside world in for me. 

I have to say that 9 years after losing Mattie, I still find certain conversations difficult. For example, today I met a woman while walking Sunny by the Potomac River. I see her on occasion because our dogs play together. Today she asked me what I do for a living. Once I told her about the Foundation, I went on to explain why I created it in memory of Mattie. She listened and wanted to hear more. But after which, she asked me..... why not have other children? I can't tell you HOW MANY TIMES I HAVE HEARD PEOPLE ASK ME THIS!!! In the past that question would have incensed me to no end. Now with time, I realize that people are just uncomfortable with child loss. I also know they can't possibly believe replacing Mattie with another child is going to make things better. However, I do believe that asking or offering that as a suggestion helps them try to find a silver lining in this nightmare. Or perhaps they think another child would provide me a ray of hope, or little being to love and nurture.

This is yet another example of growth in myself. I can't say that Mattie's death gets easier, but I am learning to live with it and therefore how to interact with others when they ask or give me their two cents about my loss. I think it is natural to ask a bereaved parent about other children, but life doesn't always give you what you want. But even if it did, having more children wouldn't negate the trauma we observed and continue to live with each day. 

Monday, December 10, 2018

Monday, December 10, 2018

Tonight's picture was taken in June of 2009. Mattie loved his frog sandbox. Though we were cautioned about exposing Mattie to water and sand (because Mattie wore a broviac catheter -- tubes that came out of his chest to administer medications), we felt it was important for him to be able to do the activities he loved. We always monitored him and fortunately for us, Mattie was very responsible regarding this catheter. Mattie kept his sand toys in this box at all times, and playing in the sandbox was NOT season specific. Prior to cancer, Mattie spent time in the sandbox even in the winter. I remember a few times, we literally brought a space heater outside on the deck to manage the cold. 


Quote of the day: When one tugs at a single thing in nature, he finds it is attached to the rest of the world. ~ John Muir 


You will see I have posted many photos tonight of Mattie in his frog sandbox. Why? Well yesterday Mattie Miracle received a donation from Dallas, TX. When I emailed the donor to thank her, I asked her how she learned about Mattie Miracle. I wouldn't have expected the answer I received in a thousand years!!! She learned about us through MATTIE'S SANDBOX!!!!!

Here is what our donor wrote to me (naturally I have concealed some personal data.......................................................

We were neighbors. We have twin boys who are now getting close to 8 years old, but they were about 3 1/2 when we moved to Dallas. You used to let them play in Mattie's old sandbox in the commons area.  

For Chanukah this year, I wanted to work with the kids on picking a charity to donate to each of the 8 nights, so that the holiday wasn't just about getting stuff. Tonight is the last night, and I opened up a photo book from our DC time, and asked them if they remembered getting to play in the sandbox, and then I told them about Mattie and how nice it was that Mattie's parents let them play in the sandbox, and so for our donation tonight, maybe we should give to Mattie's foundation - they liked that idea :)

I wish I could say I remember this donor and her boys. There are so many families who use Mattie's sandbox over these past 9 years. After Mattie died in 2009, I was mortified in the beginning when I saw other children in the box. But as the years have gone by, I realize seeing Mattie's box being used is another way to keep his legacy alive. As his box brings happiness to our neighbors. 

As I told this donor.....It means a lot that on the last night of Chanukah, you thought about Mattie and recounted his life and our Foundation to your boys. As we feel it is very important to bring Mattie's life and his legacy to the next generation. Please let your boys know how much this donation means to us. All the funds we raise go directly to helping children with cancer, as we help over 3,000 children a year. 

The blog captures Mattie's cancer journey, but it also memorializes how Peter and I survive this ultimate loss for a parent. As I read the blog over these past 9 years, I can see the evolution in my thinking (on some things). For instance with this sandbox, I went from protecting the box from others because I did not want anyone else touching something Mattie loved so much, to now being open to any little person playing in the box. I know now that whether someone plays or touches the box, it doesn't harm my memory of our time together with this box, nor does it disrespect Mattie's life in any way. On the contrary, his love for the box continues on in our commons area, and in the spring, when I have my windows open, I can hear excitement, laughter, and joy that our neighbors' children have playing in the box. All sounds that remind me of my days outside with Mattie.  

Sunday, December 9, 2018

Sunday, December 9, 2018

Tonight's picture was taken in December of 2005. We took Mattie to Boston for Christmas to visit Peter's parents. While there, Mattie got the opportunity to sled. He truly loved the whole experience. Mattie did not like going down hills on his own. So either Peter or I went with him. You can definitely see his happiness through his big smile. 


Quote of the day: Strong associations between mental illness and some physical conditions -- such as heart disease, cancer and arthritis -- also exist. ~ Timothy Sullivan


Peter sent me an article entitled, Infection in the young may be tied to risk for mental illness. I attached a link to the article below in case you would like to read it for yourself. Peter thought this article would strike a chord with me, and he was right. While reading it, I wanted to shout.... IT'S NOT JUST ABOUT THE MEDICINE!!!

In a nutshell, the article suggests that children who had been hospitalized with an infection had an 84% increased risk of being diagnosed with a mental disorder and a 42% increased risk of being prescribed drugs to treat the disorder. The article makes it clear that research hasn't proven that infections or their treatments cause mental diseases, but that there appears to be a connection. 

Given that this article has a biological/medical bend, it is not surprising that the sole focus on the development of mental disorders has a very clinical origin. As the article suggests infections and the inflammatory reaction that follows can affect the young brain and contribute to the development of mental disorders. The article only proposes that children who are hospitalized develop mental health issues because of the infection they came in with or the medications used to treat the infection. Why is it that I am willing to concede that there could be a medical connection to explain the development of mental illness in these pediatric cases, and yet the doctors and author of this article never factored in the psychosocial aspects of care? Isn't it plausible that the sheer nature of having to be hospitalized for a period of time could be traumatizing and that alone or in concert with the infection could trigger mental health issues? 

I ask the question, but I already KNOW the answer. I saw it FIRST hand with Mattie's cancer diagnosis. Mattie had no mental health issues prior to his diagnosis. After three months of living in the hospital, Mattie was diagnosed with depression, anxiety, and medical traumatic stress. Did the cancer and its treatment produce these effects? Maybe, since science truly can't answer this question for certain, I would like to point out what we DO KNOW! The psychological toll of living in a hospital is dramatic. Lights and noise 24 hours of day, traumas of others all around us, children dying, dealing with chronic pain, reactions to medications, NO sleep, and the sheer threat or fear of dying creates an environment that is toxic. Rather ironic in a way since we come to the hospital to supposedly get well and stronger. 

It is high time that we start looking at health care comprehensively in this country, because just focusing on the biological causes and treatments limits the effectiveness of care. Patients are not uni-dimensional and therefore our care can't be either. 


Infection in the Young May Be Tied to Risk for Mental Illness:

https://consumer.healthday.com/infectious-disease-information-21/misc-infections-news-411/infections-in-the-young-may-be-tied-to-risk-for-mental-illness-study-740324.html