Saturday, January 14, 2017

Saturday, January 14, 2017

Tonight's picture was taken in December of 2007. This was classic Mattie. He got this great idea to pile pillows in front of the tree and then to sit on top of the pillows! Rather than sitting beside me or on my lap. At the time I probably thought..... this won't be a usable photo to show others. Now of course what I love about the photo was it captured the spirit and creativity of Mattie. 


Quote of the day: No winter lasts forever; no spring skips its turn. ~ Hal Borland

This is how things looked this morning in our home! Sunny took to the couch, and who could blame him. It was cold, grey, and raining! Though that isn't my favorite combination, it doesn't seem to bother Sunny when he walks! He is like the post office..... he walks in rain, sleet, or snow. 

We took Sunny for a three mile walk today along the Potomac River. I just love this photo that Peter took. I entitled it.... "getting your seagulls in a row!" A rather funny sight and what was even more entertaining was they did not move from the railing when Peter approached to take a photo. 

Of course Indie is in the mix too! Don't think she gets left out. She loves to engage us, follow us around, and encourages us to play with her all the time. Now that we know she loves water, when either of us is in the bathroom, we turn on the sink for her. In a way, Indie and Sunny remind me of Mattie as a toddler. They both follow us to the bathroom and sit in there with us. Alone time is a thing of the past in our home.  

Check out this happy pooch. Yesterday Sunny wasn't feeling well, but by last evening, he bounced back and looked like himself again!

Friday, January 13, 2017

Friday, January 13, 2017

Tonight's picture was taken in December of 2006. To me this photo is priceless. It was quintessential  Mattie! Why? Because of his Lightning McQueen slippers and the bug sticker he was wearing on his shirt. Mattie LOVED wearing stickers. In fact each time he got a sticker at the pediatrician's office he would stick it to his wooden bed frame. I can assure you the wooden frame looks like it has been wall papered in stickers. Mattie was a huge Lightning McQueen fan, so much so that Peter can recite lines from the movie. Whenever I am out and about and see another child wearing Lightning McQueen items, I think of Mattie. 


Quote of the day: Anybody can become angry — that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way — that is not within everybody's power and is not easy. ~  Aristotle

This is how I began my morning! I had a licensure meeting in DC but prior to the meeting, I had to drop Sunny off in Alexandria for his grooming appointment. Grooming is an all day affair now a days! In at 9am and out by 4pm. Not unlike daycare in a way. 

In any case, I had Indie in the sink and Sunny lying outside the bathroom. Poor Sunny wasn't feeling well this morning. He was listless and wouldn't eat anything. The one thing Sunny loves to do is eat, so when he doesn't do it a red flag goes up. Thankfully tonight he is back to normal!

Prior to Mattie's battle with cancer, I wasn't as aggressive as I am now. My aggressiveness at times can set people aback. In today's licensure meeting we had our investigator's supervisor visit us. He is new to the government and as such has decided to implement new policies. Policies which impact how we can make requests to have cases investigated. I suppose it is the nature of how you spring news onto me. If he had explained why it was necessary to enforce such a change, then I most likely would have been more accommodating. But it is the tone of someone trying to regulate me and I am not the kind of person who deals with micromanagement and regulation well. In that sense I am like Mattie, we both are independent and like to have the freedom to make our own decisions that we deem are best for a situation. 

The change he came to discuss involved more paperwork. In order to get a case investigated, we now have to put the request in writing and send it to him to review. No longer can we just verbally request an investigation of a licensee with our investigator who sits in our meetings. If that wasn't bad enough, he then told me that once the written request is received he could potentially dispense the request to ANY of his investigators, not just the one who has sat on the board with me for years. I literally went ballistic. We were arguing back and forth for several minutes and the rest of the board was dumbfounded. I tried to explain to this supervisor that we are assigned an investigator who sits in our meetings for a reason. She understands how we work, how we evaluate cases and issues, and we have built up a level of trust with her. We do not have this same rapport with the other investigators. He continued to say that investigative work is investigative work. Meaning it is factual and anyone can do it and produce the same findings. I totally disagree with this, because the investigator interviews people to seek information about our cases. Anytime people are involved, this adds another layer of complexity. The investigator isn't interviewing a robot! But a person, and talking to people requires finesse, skill, and art! So I totally disagree! The tasks an investigator may perform maybe generic, but how one performs those tasks are very person specific. Nonetheless, we got no where because we did not see eye to eye. 

Needless to say, I came up with a strategy to get the written requests done within the meeting, using a standard request form. Because my biggest worry was after the meeting was over, who would write up these requests and just how long would that take to get done? I don't like things falling through the cracks, especially when it comes to an investigation. However, at the end of the day, I landed up feeling wiped out from the meeting and truly frustrated at the supervisor and also myself. Little things at times set me off. 

Before picking up Sunny today, I went grocery shopping. The check out lines were long, and naturally I picked the wrong line to stand on. Nonetheless, while I was placing my items on the conveyor belt, I overheard the check out clerk talking to the bagger. She was saying that she was very tired because she worked a long shift today and when she isn't at the store she is at the hospital caring for her mom and brother. When it was my turn to check out, the clerk asked me how I was doing. I answered and then said to her that I was sorry to hear her family members are ill and that she is working so hard. She seemed truly happy that I commented and we talked the entire time I was getting checked out. She told me about her mom who has dementia and her brother who had heart surgery. As I was walking out of the store, I reflected and said.... "I really did not select the wrong line after all." This woman needed to talk and have someone listen, so it was meant to be. 

Thursday, January 12, 2017

Thursday, January 12, 2017

Tonight's picture was taken in December of 2006. Mattie was on the Jungle Queen, a riverboat that takes you on intercoastal tours and to a tropical island that features an alligator show and other rare animal sightings. Mattie loved the adventure and enjoyed pretending that he was steering the boat. Mattie had a passion for being on the water and his one wish was to own a real boat. NOT a toy boat!


Quote of the day: To conquer frustration, one must remain intensely focused on the outcome, not the obstacles. ~  T.F. Hodge


My morning started by talking to a few staffers on the Hill about the upcoming Roundtable event on January 24. They wanted to alert me that our event starts at 8am, however, the catering folks do not report to work until 7:30am and therefore there wouldn't be a enough time for set up. They requested that I change the start time to 9am. If the event was a month away, maybe, but not when we are less than two weeks away! There are people commuting from all over to attend this invitation-only event and I can't expect people to rearrange trains and planes for this last minute issue. It would make Mattie Miracle look completely unprofessional. I have to say I was deeply frustrated when I got off the phone this morning, because yesterday I spoke to the Capitol Hill catering team and NO ONE mentioned my start time as being an issue.

I admit after the call this morning I was frustrated and wasn't sure how to handle this. However, my rational side took over and I decided to email my catering contact and copied the staffers from this morning's call on the email. The cater wrote back immediately and told me that her staff would be on site two hours before my event and that this isn't a problem. It makes sense to me since everything on the Hill starts early, and I just couldn't imagine catering not on site early as well. Thankfully I have a can do attitude that took over, because initially I wanted to say THIS EVENT JUST CAN'T be done. Mind you other issues have unraveled throughout the week that led me to this conclusion. 

But we are back on track this evening and for those of you wondering, the Roundtable is an event in which we are bringing in researchers, insurance companies, legislators, and cancer advocates to strategize ways to move the Psychosocial Standards of Care forward. Thirty people will be in attendance, which is also hysterical since the room they assigned us on the Hill is small. This is very reminiscent of 2012, when we held the first ever psychosocial symposium on Capitol Hill. It was at this event that we charged the research community to develop standards of care. In 2012, the congressional offices gave us the smallest possible room in the Capitol Hill Visitors Center to host the event. In their minds they probably thought..... who is interested in psychosocial care and childhood cancer? After all the big advocacy push is for the medicine! Needless to say the room's capacity was 85 people in 2012 and I had 120 people who wanted to attend! We managed and it was a great success!

I tell you this because I am used to operating in small rooms on Capitol Hill, but the room we are assigned on January 24 sounds like it is as big as a storage closet. I have been working for two days with catering on how to fit people in this room to work and also eat! It won't be pretty! 

In any case, we have ten professional speakers. The speakers will lead the conversation in six topical areas (resourcing, outcomes, legislative/policy, delivery models, reimbursement, and re-accreditation). The participants will hear from the speakers for about twenty minutes on each topical area, and then discussion questions will help guide each of the topical areas for attendees. Thankfully our corporate sponsor, Dominion Consulting, has agreed to serve as moderators at our event and they even will assist us in developing a summary report once the event concludes. We have hired a professional photographer and audio recorder for the event as well. Breakfast, lunch, and snacks have been planned and we will even be visited by three congressional members (who will receive childhood cancer champion awards from us) who will give our attendees greetings! So there are many people and logistics to manage. In addition to planning for hotels and travel for ten out of our thirty attendees! 

Wednesday, January 11, 2017

Wednesday, January 11, 2017

Tonight's picture was taken in December of 2007. We celebrated Christmas in Deerfield Beach, FL with my parents and we would try to give Mattie a little beach time everyday. When Peter and I first brought Mattie to the beaches in North Carolina, he hated it. But within two years time that all changed, and he grew to LOVE the sand. The water not so much, since he had a healthy respect for the ocean. Mattie was a born builder and saw the possibilities of using sand to create. 


Quote of the day: Dogs just need you and love, that’s all. ~ Jennifer Westfeldt

It was another full day of working on the Foundation's round table that is coming up. Don't ask me how a thirty person event could be so complex to plan. I plan the Walk each May, an event which draws around 400 people, so I figured how challenging could a smaller event be? Well I am finding out!!! Today was non-stop communications by phone and email..... communicating with speakers, attendees, caters, logistical issues, and congressional staffers. In between all of this, Sunny and I did our five mile walk for the day. I find the winter months, we can't handle much more than that. 

But check out the sight near by desk at about 6pm! Sunny took to Mattie's bed and Indie was on the floor watching this. Sunny retires early for the night, but gets up EARLY. He starts stirring at 4am. Not unlike a baby!

What I notice about Sunny is he likes to be wherever I am! If I go upstairs, he wants to be there and when working on my desk he typically isn't far from my feet. Sunny motivates me to take periodic breaks. He isn't subtle about it either. When he wants to go for a walk he will hover around me.... in essence telling me it is time to stop and walk!

Tuesday, January 10, 2017

Tuesday, January 10, 2017 -- Mattie died 382 weeks ago today. 

Tonight's picture was taken on Christmas in 2007. That year Mattie celebrated the holiday in Deerfield Beach, FL. We even bought a little Christmas tree at Target made out of green feathers! Mattie thought it was priceless and we brought it home and it sat on Mattie's shelves for years! Mattie got presents from Santa both in Florida and at home when he returned. But Mattie loved the idea that Santa would come to two places since he knew Mattie wasn't celebrating in DC that year. 


Quote of the day: Until one has loved an animal, a part of one's soul remains unawakened. ~ Anatole France

Despite working all day on various Foundation items, I had non-stop entertainment at home. Indie and Sunny keep me on my toes all day long. Sunny with his need to attention and walk (regardless of the weather), and Indie who I learned today LOVES water! 

This morning Indie jumped in my sink. I literally posted this photo on Facebook and to my amazement cat lovers where sharing stories with me about how their cats do the same thing and that I should try turning on the water slightly to see her reaction. 

Well the reaction was priceless! Miss Indie LOVES water. She was batting at it and even drinking it. I have had many cats growing up and NOT a one would go near water. So it never dawned on me to turn on the water. I thought she would flip out. On the contrary!

Get the picture?!

Then this evening, I did lots of laundry. I even washed our couch cover. Well don't you know it..... as soon as that cover was back on the couch, look who jumped up! Sunny loved the freshness and warmth of it as it came out of the dryer. It isn't boring in our home to say the least, and they are a marvelous distraction from always working. 

While walking Sunny today, I ran into two college students who stopped to talk with me about Sunny. They said he was beautiful and then proceeded to ask if he was a service dog. I told them that this was very observant of them and then asked why they thought this? The young man said because his big eyes read bright, sensitive, calm, and he studies his environment. I would say this is a very accurate description of Sunny. That is how I read him. In fact I fell in love with Sunny's eyes through the rescue's Facebook page. I adopted Sunny sight unseen, which can be risky. But the eyes were very telling to me. I am so happy that others can see this as well. 

Monday, January 9, 2017

Monday, January 9, 2017

Tonight's photo was taken in December of 2007. We took Mattie for a fan boat ride in the Everglades with my parents. This was NOT the boat we rode on, however, this old boat was on display because this was what fan boats used to look like. Mattie was always intrigued by boats and a fan boat ride to see alligators up close and personal was right up his alley! A day I will never forget and frankly until Mattie came into my life, I never had been on a fan boat. Mattie caused me to experience many firsts, things I would never have done if he weren't in my life. He brought adventure into my world. 


Quote of the day: What good is the warmth of summer, without the cold of winter to give it sweetness. ~ John Steinbeck


Though I get Steinbeck's quote, I am quite sure I would be JUST FINE without the cold of winter and would appreciate the warm weather regardless. I need no cold comparisons. Sunny and I walked five miles today in the bitter cold. The only one bothered by it was me! Sunny seemed raring to go. 

I have been dealing with a non-stop migraine. I am very stressed over the Foundation's upcoming, January 24, Roundtable on Capitol Hill. Though this isn't like planning the magnitude of a Walk and Family Festival, the logistics are still overwhelming. It requires travel arrangements for speakers, catering menus, planning the sessions, coordinating people, inviting congressional members and giving them awards at the event and the list goes on! Not to mention coordinating professional photographers and audiorecorders.

We were waiting for two speakers to confirm their attendance at our event. One very important speaker is a payor from Anthem. Anthem has been working with us, but their presence is crucial in order to have a reimbursement of services conversation at the roundtable. All of us can talk and speculate at the roundtable, but having someone with the knowledge and expertise is vital. The other professional who responded to us today has been instrumental in the adult cancer community at getting their psychosocial standard embedded within the hospital re-accreditation process. This is key, because if hospitals want to keep their accreditation (which they do), they need to comply with standards, one of which is this new psychosocial standard. Naturally the goal is to figure out how the adult community did this and try to apply such a model to our childhood cancer psychosocial standards. So today I feel like we hit the jackpot with these two RSVPs!!!

Sunday, January 8, 2017

Sunday, January 8, 2017

Tonight's picture was taken in December of 2007. I will never forget this moment in time. Mattie's school has a Christmas celebration called Lessons and Carols and each grade in the lower school performs a choral piece for parents, friends, and other family members. The children are required to dress up! That was a hoot too because Mattie did not like anything tight around his neck, so finding the right outfit and tie was my mission. But thankfully my friend told me about zip up children's ties. I think these are ingenious! Before going out the door that morning to drop Mattie at school and sit in the auditorium, I snapped this photo! I thought we would have more Lessons and Carols to attend, but it never happened. Thankfully that one was special. 


Quote of the day: Dogs don’t rationalize. They don’t hold anything against a person. They don’t see the outside of a human but the inside of a human. ~ Cesar Millan


I am a big Cesar Millan fan. I watched his show, the Dog Whisperer, probably before he became truly popular on TV, and way before he developed the large Dog Psychology Center he has in Southern California. I am intrigued by how well Cesar relates to ALL dogs, and I admire his philosophy that every dog can be rehabilitated and every human trained. He is a self taught dog behaviorist and ironically he has an East coast center now in Davie, FL. What is ironic about this is I saw this center without realizing it when we went to Flamingo Gardens last week. We passed the Country Inn Pet Resort twice while driving and I commented on how nice it looked.... a good place for Sunny! I do find it interesting that many dog trainers do not like Cesar or his philosophies. All I know is if I had a problematic dog, I would want Cesar on my side. When you watch him, he just naturally seems to relate to dogs immediately and they seem to connect. 

One day a few years ago, I was in Georgetown and meeting a friend for lunch. What stunned me was while eating, who walked in but none other than Cesar Millan. I debated whether to leave him alone or to talk with him. I did go up to him to tell him how much I love his show and as a therapist how his techniques really resonate with me. He was truly taken back by my comment, because he seemed very humble and kind that I would take the time to talk with him. 

Millan's quote above catches my attention, because with Sunny, he seems to be the kind of dog that reads people. He doesn't judge the book by its cover, but has instead a sixth sense and knows who is kind and trustworthy almost automatically. I love watching him in action! 

Sunny had his first obedience class today. It is an eight week class and is being taught by the same instructor we had in the Fall who helped us prep for his Canine Good Citizen test. Do I think Sunny needs this class? Probably not! He is very compliant and obedient. I view the class as something I need so that I can communicate better with Sunny, especially if I eventually want to bring him into a hospital to work with people who are ill. Sunny is very familiar with the training ring since he was there all last month. Yet when we walked in today, he started whining. The whining went on for a while and then he moved into barking! Since this is NOT typical Sunny behavior I took note of it. I did not ignore it but tried to understand it. My initial thought was he did not want to be there and wanted to leave because last month he had enough. 

I did not give into his demands but I tried to help him through it. I read on line that dogs do whine (for many reasons) when stressed. Similar to how I described it... whining followed by barking. Sunny RARELY barks or whines so when he does, you ponder. In so many ways being Mattie's mom, also helps me to be a good dog parent. Mattie was a sensitive baby and toddler and I had to get up to speed quickly to read his ques and understand how he was interacting with the world and how the world was interacting with him. Mattie had moments of intense stress and anxiety and would have full blown tantrums just about anywhere. I learned to read them and predict them. But you work through them rather than be taken over by them. It took me MONTHS to learn this. It is important to remain calm and focused during these times, and perhaps redirect and distract. Redirection and distraction are the tools I used today with Sunny! 

Sunny LOVES treats, so as he was working himself up with twirling and barking, I started walking with him quickly in the training ring and also gave him treats. It worked beautifully. Part of the stress with training, is that dogs are NOT allowed to socialize. This bothers Sunny greatly because he wants to meet, greet, and play with the other dogs. But training is training and the instructor holds firm to this, that dogs are there to learn and not to be distracted by one another. Either case, whether Sunny and I learned the "touch," "leave it," or "take it" commands is up for debate, but I think it is vital to experience Sunny in different settings and to find ways for us to work through things and communicate.