Friday, November 28, 2014

Friday, November 28, 2014

Tonight's picture was taken the the day after Thanksgiving in 2008. Mattie and Peter had a post-Thanksgiving tradition. They would create a wonderful Christmas light display in our commons area for everyone to see! When they first started it, it was a simple string of lights. Then with each subsequent year the design GREW and a mechanical creature also seemed to be added to the layout from year to year. In 2008, Mattie selected the dog you see in this photo to be added to the display! The dog looked just like Scooby Doo (a character he LOVED)! The display had mechanical reindeer, snowmen, candy canes, you name it! People from all over our complex would tell us how much they LOVED our display and in fact it would inspire neighbors to decorate their balconies. After Mattie died, the tradition of decorating our common space also died. 


Quote of the day: Everything can be taken from a man but one thing: The last of human freedoms - To choose one's attitude in any given set of circumstances. To choose one's own way. Between stimulus and response there is a space. In that space is our power to chose our response. In our response lies our growth and our freedom. ~ Viktor Frankl

We took this photo last night right before Thanksgiving dinner. Pictured with me were my lifetime friend Karen, her mom, Naomi, and Naomi's friend Annette. 
(from left to right: Annette, Naomi, Karen, and Vicki)

I learned last night that one of Annette's son's was diagnosed with an inoperable form of brain cancer in March. So clearly though the type of cancer was different and the circumstances and age of her son also varied, Peter and I could very much relate to the psychosocial issues that her entire family are now facing and unfortunately will face for the rest of their lives. 

Now you maybe looking at this photo and saying.... what on earth is this??? I see trees and a wrought iron fence, right?!!! You would be correct!! As Peter was driving from our hotel to where Karen and her mom are, we passed this area. As soon as I saw it, I immediately flashed back in time to my childhood, to all the times I was sick and had to visit my pediatrician. I remember being in the back seat of the car and staring out the window of my mom's car and looking at wrought iron fences and dreading to have to see the doctor! So when Peter passed these fences, this is the feeling these fences evoked. Then I looked at the name of the street we were on and saw we were on "Bryant Avenue"....... I immediately text messaged my mom and asked her if my pediatrician was on Bryant Street in White Plains. She confirmed that I was indeed correct! I was a child and I haven't lived in NY for decades. So I honestly do not know my way around these streets anymore. I do not get the chance to return to where I grew up as a child much any more, but as Peter was driving around yesterday and today, it was like some roads seemed so familiar. I couldn't tell you their names, but I knew I had been on them before, and even as we passed one school, I told Peter..... "I swear I saw fireworks on the fourth of July there one year." 

Today we journeyed to Greenwich, CT, which isn't far from where we are staying in New York. About 17 miles!!! We visited the Bruce Museum and saw an exhibit entitled, "Northern Baroque Splendor: The Hohenbuchau Collection from: Liechtenstein. The Princely Collections, Vienna." Known as the “Golden Age” of Netherlandish art, the 17th century witnessed the birth of new genres of painting, from still life and landscape to scenes of everyday life. Indeed, by merging drama and dynamism with exacting naturalism and human sympathy, Northern Baroque artists created a new, enduringly compelling kind of painting. The Bruce Museum explores the variety and splendor of Northern Baroque Art across the 17th century. The Hohenbuchau Collection is one of the largest and most varied collections of Northern Baroque art assembled in recent years and is now on long-term loan from LIECHTENSTEIN, the Princely Collections, Vienna.  This selective showing at the Bruce Museum is the inaugural venue in the U.S. before it travels to Cincinnati.

Primarily comprised of Dutch and Flemish 17th century paintings, it exhibits all the naturalism, visual honesty and technical brilliance for which those schools are famous. While many modern collections of Old Masters specialize in a single style or subject matter, the Hohenbuchau Collection is admirable for offering examples of virtually all the genres (figures, landscapes, still lifes) produced by Lowland artists; the collection is distinguished for the many quality individual paintings executed by more than one artist, working in collaboration. 

There were 80 painting on display, I am showing four of the ones that caught my attention below!

"Temptation of Christ in a Broad Landscape" by Denys van Alsloot and Hendrick de Clerck ~ 1611

Hendrick de Clerck painted the figures and Denys van Alsloot painted the landscape and what made this a unique piece was they both signed this painting. This scene depicts the temptation of Christ in which Satan approached him dressed as a wily monk. There are many different scenes captured in this one painting! Another one was in the top left hand corner. Christ stands at the mountaintop surrounded by angels after refusing Satan's offer of the world's kingdoms in exchange for worship.

"The Holy Family Surrounded by a Garland of Roses" by Daniel Seghers and Simon de Vos

de Vos painted the Holy Family in the center, where Mary attends to needlework and Joseph chisels wood and Christ gathers good chips. While Segher's surrounding roses and ivy symbolizes Christian love and immortality. 

These roses are absolutely breathtaking and truly capture your attention from clear across a room! 

"Flowers in a vase, with a kingfisher and a lizard" by Jacob Marrell

This painting celebrates the tulip! Marrell was particularly drawn to the red and white striped tulip, which was rare and very expensive back then! This painting was done only two years before the famous "tulipomania" of 1636-37, when speculation of the bulb market reached dizzying heights and ruined many careers. Like many Dutch and Flemish Still Lifes, this bouquet could not have existed in reality in the 17th century because the various flowers depicted here were unable to bloom simultaneously (unlike today, in which we have access to flowers at any time of year, this wasn't the case back then, instead such a bouquet existed in one's mind ONLY). Therefore such paintings advertised the virtues and powers of these artists. 

"Forest floor still life with thistles, reptiles, frog, snail, butterflies, and other insects" by Otto Marseus van Schrieck

What captures one's attention about this Flemish painting is the incredible use of luminosity and the fluorescent effect of the content portrayed within them! It was as if these butterflies were going to fly off the canvas and into the room! They were that beautifully done. Just vibrant, colorful, and aglow. So many of these paintings within this exhibit chase your attention because of their technique, color, and lighting. True works of art. 

Wind Formation, Victoria Lower Glacier

In 2012, Diane Tuft traveled to Antarctica after receiving a grant from the National Science Foundation’s Antarctic Artists and Writers Program. Her images chronicle the extraordinary results of that expedition with stunning photographs that capture Antarctica’s raw, untouched splendor with colors, textures, and compositions that verge on the surreal. 

This is a photo of the Invertebrates found in the Antarctic waters! This wouldn't my cup of tea, but Mattie would have loved seeing these creatures in their jars! Mattie would have also appreciated the room devoted to feeding live crabs and horse shoe crabs at the museum! This was actually a very informative session in which we got to see how horse shoe crabs, whelk shells, and even clams and oysters process and eat food. 

Vicki, Karen, and Naomi on Greenwich Avenue in downtown historic Greenwich, Connecticut! Mind you it was 32 degrees and freezing! Yet we were out walking in it. 

I was the worst out of all of us, needing a break from the cold. So we ducked into a store to get warm! We landed up in a huge store that featured fine china, household items of all kinds and these adorable holiday displays. 

Also on our adventure today, we drove through the exclusive community of Belle Haven! This is where I would say the life style of the Rich and Famous live! The houses are beautiful and tucked into this private and exclusive community is this charming and old world Inn, the Thomas Henkelmann Homestead Inn. http://www.homesteadinn.com/index.php

Thursday, November 27, 2014

Thursday, November 27, 2014

Tonight's picture was taken in November of 2008. Mattie's school counselor gave him this cute turkey hat in celebration of Thanksgiving and as soon as he saw it, he put it on his head. Mattie had a great sense of humor and spirit about him. Even under the most trying of circumstances. With that said, there were times he would get very down and depressed. We would need to pull him out of these dark places which took super human strength, strength which in many cases we did not feel we always possessed. However, we understood what was at stake and also realized what Mattie was enduring.


Quote of the day: It is literally true, as the thankless say, that they have nothing to be thankful for. He who sits by the fire, thankless for the fire, is just as if he had no fire. Nothing is possessed save in appreciation, of which thankfulness is the indispensable ingredient. But a thankful heart hath a continual feast. ~ W.J. Cameron



I am posting today's blog early because Peter and I are driving to New York to visit my lifetime friend, Karen, and her mom. I will be writing from New York on Friday. We wish our readers a good Thanksgiving. I am well aware that the holidays are not a joyous and happy time for everyone. Especially for those who have lost a loved one and those who maybe struggling with other hardships. In fact, holidays have a way of only adding fuel to the fire. 

Holidays can make us feel like outliers from the norm. We can get lost in the hustle and bustle of the season. People talk about their parties, writing cards, shopping, and so forth. In many ways these "tasks" as others may call them are just little reminders of the things we do not have on our "to do list" and aren't invited to do anymore. If you are one of these outliers, you really aren't alone. There are others of us! It is just not talked about openly because such dialogue, in a social setting, is an immediate conversation stopper and makes other people uncomfortable. Any thing out of the norm or perceived as different is a head turner. But meeting another parent who marched to her own drum last weekend at the Special Love retreat was helpful for me. I just wish there was a way that us 'outliers' could be able to have our feelings heard and embraced by society, so that we could better integrate and share in the lives of people we once knew. But this takes work on both sides. Not just the outlier/griever. 

To our friends and supporters of Mattie Miracle, we are deeply grateful and thankful to you for supporting the Foundation five years and counting! Have a peaceful and meaningful day. 

Wednesday, November 26, 2014

Wednesday, November 26, 2014

Tonight's picture was taken in November of 2002. Mattie was seven months old. This was one of my favorite Fall photos of Mattie and me. I loved his "puppy" hat that he was wearing and the oak tree behind us has significance for us later in life. That tree supplied leaves for all the tent moth caterpillars Mattie brought home in the spring from his school playground. We would feed them and care for them long enough until they formed their cocoons, metamorphosed into moths, and released them on our deck! 


Quote of the day: Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow. ~ Edward Sandford Martin

I snapped a photo of our beautiful Christmas Cactus that is in our living room! This plant clearly is slightly off and a bit confused since it is Thanksgiving and NOT Christmas. But nonetheless, it is an amazing sight! These plants can be temperamental! I had a Christmas Cactus in the past that bloomed once and then never bloomed again, and then died! This one seems to be hardy and a real producer. It comes back every year! 

As I mentioned in last night's blog I finally got around to filling our bird feeders! Just in time, since today it began to slightly snow and the temperature seemed cold and raw! What I worried about was the new location of the feeders! Our sparrows have been used to the feeders hanging on our deck! This year I moved them to our commons area! This morning, the birds were all a flutter! They were outside my office window making a racket. They wanted to be fed. I wasn't sure how exactly to communicate to them that I understood they were frustrated with me but that the feeders were there and FILLED. They were in 'line up mode' as I call it, on the wall staring at me. Perched and waiting for me to address their needs. Then all of a sudden one of them did a fly over and caught glimpse of the new bird feeder set up..... and that was it. This bird signaled the rest, and the feeding frenzy began. They come swooping down at the feeders in packs! We have three feeders hanging from hooks. But by the end of today, all three feeders are half full! They are very hungry creatures and we go through a great deal of bird seed every two weeks! 

I am quite sure I feed the same sparrows year to year. Some sparrows can live up to 15 years. I would almost bet that some of these sparrows I started to feed around the time Mattie was an infant. After all, I began this past time, around the time Mattie was born. I was spending a lot of time at home then and it gave us something to do in the winter months and a way for us to engage with nature. Mattie loved it and then we just continued it year after year. Because we have done this for SO long, the pack continues to grow bigger with each year. I enjoyed seeing them come back today, and it is the only part of winter I like. 

Tuesday, November 25, 2014

Tuesday, November 25, 2014 -- Mattie died 272 weeks ago today.

Tonight's picture was taken in December of 2008. That day a friend of mine from the University came over to visit us with her wonderful dog, Jax. Though Jax was much larger than Mattie, he was very kind and gentle and Mattie took to him right away. In this particular photo they were having a chasing game. Carrie was running around with Jax, and Peter was pushing Mattie in his wheelchair. As you can see Mattie was getting a kick out of this and smiling!!! Being outside and in the fresh air was always a positive and wonderful experience for Mattie. This was something I learned early on, back in Mattie's infant days! 


Quote of the day: In order to see birds it is necessary to become a part of the silence. ~ Robert Lynd


Last week, when I went downstairs in my building to do laundry, my neighbor from upstairs asked me when I was going to start feeding the birds. She could see that my sparrows were coming back (they disappear during the summer months) and were flitting around our deck outside in search of food. I always find it amazing how these sparrows return every winter to the same location to be fed! They come to the same hooks, typically where I hang the feeders in the winter time! However, during the summer, the hooks have wind chimes on them. So you can't say that they have seen the feeders out all summer. They haven't!!! They just know by instinct to return to the place they have been fed from the winter before!  

This year, I decided NOT to feed the birds on our deck! Mainly because they made such a mess last year. I couldn't keep up with it. So instead, after my 85 year old friend Mary died, I claimed her bird feeder hooks and put them in my commons area. As Mary was dying, I bought her this bird feeder garden hook. I figured this would be a nice thing for her and her caregivers to look at while bed bound in her final days. To me listening to birds is very peaceful. The garden area in our common space, I have turned into a memorial garden in a way to Mattie. These are all bushes he planted with Peter's help when he was a little guy. They were tiny at one time and now they are all five feet or taller. So Mary's garden hooks seem to fit in nicely in this tribute garden, as I think of her and Mattie every time I look out my window from my office space. 

I suspect that our garden in the spring and summer brings our neighbors happiness and our birds in the winter also brings them a sense of life and closer to nature. However, I am always amazed when people stop to tell me about it. In fact while I was filling up the feeders today, another neighbor came to talk to me about how much she appreciates how Peter and I beautify our commons area and that we are the reason for the bird traffic being around our complex. She meant this as a high compliment. We live in the heart of the city, therefore attracting greenery and nature isn't always easy, but we work hard at it and I do think it makes a difference to one's peace of mind, body, and spirit. Which maybe why I find winter so incredibly depressing and stifling.

Monday, November 24, 2014

Monday, November 24, 2014

Tonight's picture was taken in December of 2008. Mattie constructed this pirate ship with Peter's help. In typical Mattie fashion he added a flair to the ship by putting a Christmas bell on top of the sails to spread holiday cheer to those of us in the room or who entered the room. Mattie loved Christmas bells and we used to have many of them all over the place! He would even wear a few around the hospital. I am not sure where he got his spirit from.... because the majority of us if faced with his disease, I believe would be struggling to be as gracious, kind, or joyous.


Quote of the day: The person who follows the crowd will usually go no further than the crowd. The person who walks alone is likely to find himself in places no one has ever seen before. ~ Albert Einstein


As Thanksgiving is approaching in a few short days, I realize that this is our sixth holiday without Mattie. Almost as many holidays as the number of years Mattie was alive and a part of our lives. It is almost too hard to grasp that soon Mattie will be dead almost as many years as he was alive. This is yet another difference between the loss of a child and an adult. Of course any loss of a loved one is profoundly wrong and deeply upsetting. But the loss of a child is chronologically confusing, very unnatural, and alters one's hope for a future. 

I will never forget Thanksgiving of 2008, as I know neither will Peter. It wasn't a happy occasion. We were home from the hospital, recovering from Mattie's limb salvaging surgeries. Like most institutions, the mindset was to try to get you home for the holidays if possible. Of course getting us home was no picnic..... you might as well have left us in the hospital! Mattie was absolutely miserable at home. He was in pain and dealing with depression and signs of trauma. I remember we tried tuning into the Macy's parade to distract him. That too was a nightmare! To this day, I not only won't watch the parade, I don't even like hearing the mention of it. It brings me right back to Thanksgiving 2008. I can remember that moment in time, just like a flashback of pain and torture. Peter and I were desperate that day, and it seemed as if we were fighting in our own battlefield.... accept the enemy couldn't be seen. We felt helpless, hopeless, and with great despair. 

In addition to dealing with pain, depression, and trauma, Mattie also had a huge ulcer on his tail bone around Thanksgiving time. Since Mattie was wheelchair and bed bound this was a serious problem. A problem because if his skin opened up and got an infection this would prevent him from being able to continue on his chemotherapy protocol. Of course not being able to get his chemotherapy on time would mean that his cancer could potentially run rampant in his body. As it was, his body was off of chemotherapy at that point in time to recover post surgery, so we did not want to delay it any longer than necessary. The goal during Thanksgiving was to prevent the ulcer from opening up and we were required to send our oncologist a photo of Mattie's tail bone EVERY day! Every aspect of Mattie's care was down right overwhelming and in so many ways what we were asked to manage put us truly on par with developing nursing skills. After all, we were flushing IV lines, changing bandages, doing dressing changes of central lines, administering all sorts of medications, and the list went on! 

As the holiday season approaches all over the Internet LISTS begin to pop up about how to survive if you lost a loved one! I understand the nature of why lists are formed, mainly because holidays are challenging times for those of us who suffered a loss. They can be true set backs. They aren't wonderful times, they do not necessarily make us feel joyous, happy, and with the desire to rekindle traditions and unite with family and friends. In fact, those traditions can set us off in many ways. But what I do find most irritating is that these lists seem so trite to me. Almost like a recipe.... if you follow these ingredients, you are certain to feel better! Wrong on many counts. Sure they supply ideas, and they maybe open ended, but when push comes to shove, lists are prescriptive. What I have come to know about myself after five years dealing with Mattie's loss is that you can't be prescriptive with me. As soon as you start telling me..... you should, or maybe consider this..... YOU HAVE LOST ME!!!! 

Fortunately this past weekend, I met another mom who like Einstein's quote aptly puts it, "walks alone" like me. It isn't an easy place to be because it would much easier to follow the norm and what convention tells us to be, feel, and do. But in the end, that doesn't fit me, my personality, nor truly absorbs or understands the magnitude of my feelings or loss.    

Sunday, November 23, 2014

Sunday, November 23, 2014

Tonight's picture was taken in December of 2008. Mattie was beginning to take piano lessons right before he was diagnosed with cancer. Mattie loved music and though he really did not understand theory or how to read music, Mattie wanted to create musical pieces off the top of his head. Noise never bothered me! Even when he was a toddler, he would have all his toys on at the same time..... making a racket, and that wouldn't bother me. The only thing that got to me was tantrums, crying, and screaming. Which Mattie did a ton of. But mechanical noises, toys, and piano banging did not phase me back then. 


Quote of the day: A person who does many things differently and often independently makes perhaps the biggest difference of the highest significance for the greatest excellence in everyone's life. ~ Anuj Somany



Today Peter and I spent the day catching up on chores and doing work. It seems to be our primary mode of operation and certainly how we cope with difficult days and approaching holidays. I do realize though I am extremely tired, which is why tonight's blog is short to non-existent.  

Saturday, November 22, 2014

Saturday, November 22, 2014

Tonight's picture was taken in November of 2008. Mattie was in his room recovering from his second limb salvaging surgery. As such it was a major feat just to relocate him from his bed to this hospital chair. I can tell given what was going on in the room.... it was a Friday!!! Because the volunteers in our room were from the University's chemistry club. They who would visit every Friday and share an experiment or two with the kids. Mattie LOVED these experiments. If Mattie was unable to come out of his room, the experiments came to him! Though the room was tiny, somehow we made it work. I have to say this was an adjustment for me, because the hospital room was like entering our home. Sometimes I really did not want people in our personal space, but because I knew it was for Mattie's best interest and his emotional health, I put up with all sorts of things and at all hours of the day. When I reflect on the chaos we lived through for months on end, it is truly hard to know how we are still standing. 


Quote of the day: Do not be afraid to color outside the lines. Take risks and do not be afraid to fail. Know that when the world knocks you down, the best revenge is to get up and continue forging ahead. Do not be afraid to be different or to stand up for what's right. Never quiet your voice to make someone else feel comfortable. No one remembers the person that fits in. It's the one who stands out that people will not be able to forget. ~ Nancy Arroyo Ruffin

Peter and I drove to Winchester, VA last evening and spent a night at the George Washington Hotel! This is a historic hotel that was originally constructed in 1924, and went through a complete renovation in 2011. 






I have never been to Winchester, VA, but it is about 90 minutes west of Washington, DC. The countryside is quite beautiful, but since we were driving at night, it was a bit of a dark sort of experience. Unlike today's trip home which was filled with beautiful landscapes and scenes of farms and cows! 

Stepping into the hotel lobby, though modernized, had an old world feel. Which was lovely! 

Last night, Peter and I worked together to get our power point presentation together. We dined at the Hotel's restaurant. I LOVED the name of the restaurant.... The Dancing Goat! Some how it just makes you happy to picture a goat frolicking and dancing to music! Or maybe that was my mental state. 

I originally thought we were going to present one thing today, but then one of the leaders of today's retreat asked whether we could also include information to parents about trauma. Though this wasn't in my plan, I trust her insights and I know she understands her audience. So I really took her guidance to heart. Thankfully I did! So for this past week, I have been revamping our entire slide deck! Up until last night as well! Since Peter was on travel too, I was unable to really sit in one location and talk this through with him. So last night at the Dancing Goat we worked through 70 some odd presentation slides since our presentation was over TWO HOURS today!!!

We presented to 70 parents in this beautiful ballroom! I have to admit presenting to fellow parents can be a daunting phenomenon. Maybe it is daunting to me because I am NOT sure what role I am playing. Am I a parent, am I a counselor, am I an educator, or what? What needs am I serving? Am I delivering content, reflecting feelings, will my story upset someone, trigger bad memories, will parents feel I am suggesting my situation is worse than theirs, and the list of what ifs stirs around in my head! Given all that we had to cover today, we had a very aggressive content agenda especially since it involved sharing information about what medical traumatic stress is (a set of psychological and physiological responses of children and their families to pain, injury, medical procedures, and invasive or frightening treatment experiences), what the symptoms are (arousal/agitation, re-experiencing, avoidance, and sometimes dissociation), and how it may look different in children depending upon their age. Peter and I shared aspects about medical trauma in Mattie's history as well as my own personal struggles with it now. Parents found this very valuable. Of course I am NOT at all surprised by this, but many parents came up to us after this presentation to thank us for giving them knowledge and information for the issues they have been experiencing. Several of them now felt better armed to go back to their physicians to have meaningful dialogues to get treatment for their children. Peter and I both felt very good about this, because if we can help even one child through a presentation, then we deem this as successful. 

In the process we also met and chatted with several incredible parents. One couple lost all three of their children. One child to cancer, the second to an accident, and the third had a heart attack. The mom described her child who had a heart attack, by saying that he died of a broken heart. How could he not? He lost two other siblings. The question is how does this mom go on? I of course know the answer to this.... there is NO answer! 

I met another mom who I chatted with for a while. She came up to me to tell me how much she enjoyed our presentation and how much she appreciated all the data and research we shared. She was candid with me and told me she did not like the fact that I showed the four minute remembrance video of Mattie. Peter and I gave an introduction and after our introduction we explained that Mattie guides our mission and our work, and since we are all parents, parents share their children with each other. So we felt it was important to share Mattie with all of them. We wanted them to understand that we knew what it was like to be in their shoes. I understood the feedback she was giving me. She wasn't telling me to cut this video out of future presentations, or that she did not see the relevance for why we shared it. She was just telling me it was hard for her to see it and she was thankful that our whole presentation wasn't comprised of this very raw emotional content. Most likely that would have been hard for everyone in the room to sit through. Talking about research and data and then applying it to one's life circumstance is much more relevant, especially in the context of a parent retreat. But what I also got from our dialogue together was this mom feels different from the mainstream cancer community. This is her story, so I am not going into detail about it here. Nonetheless, after talking with her, I concluded that we all handle our child's cancer journey differently. Because the research or those within the cancer community suggest we should do x, y, or z, doesn't necessarily mean that will work for everyone. Sometimes we have to be ourselves and figure out what will work for our own mental stability. Being different does make people like this mom and myself stand out. I usually keep my opinions to myself now, but she and I were talking the same language. As if we studied at the same school of hard knocks, and yet we just met each other. A rather surreal experience, which I wouldn't have had if I did not go to Winchester, VA!    

Friday, November 21, 2014

Friday, November 21, 2014

Tonight's picture was taken in November of 2008. Pictured with Mattie was Liza. Liza was a child life volunteer. Neither Peter nor I will forget Liza. Liza was a professional dancer at one time and also had a voice like Glinda the good witch from the Wizard of Oz. She was very memorable, sweet, and had a wonderful disposition and manner about her. Mattie gravitated to her, and I can't say he gravitated to most volunteers.  Most volunteers he threw right out of the room! Like me, Mattie assessed people quickly and was an excellent judge of character. This photo captures two friends, a Lego car, and if you notice closely something was driving the Lego car. It was a roach made out of model magic. We still have this roach today. 


Quote of the day: It's not what you look at that matters. It's what you see. ~ Henry David Thoreau

I feel as if my life has turned into one large piece of candy! I am either loading candy, transporting candy, or giving it away! Today I drove around parts of DC that I was unfamiliar with. I had my map and my GPS on my phone talking to me. I am very directionally challenged so I need all the help I can get. Meanwhile Peter was traveling to Atlanta for the day on business, so I knew I couldn't call him if I was lost. Which I do often! He is so used to my panic calls! The funny part is I expect him to know exactly where I am and help me find my way out of any wrong turns that I make. Somehow he always manages, he is better than a GPS. But today I was flying solo and I had to have maps and my phone talking to me.... guiding me along the way. 

My first stop was to the Ronald McDonald House. The house managers were good sports and posed for a cute photo! The house itself looks lovely from the outside, though unlike the one in Falls Church, I did not tour this facility today. 

My next stop was to the HSC Pediatric Center. Peter and I had actually visited this Center once before, a few years ago to do a presentation about Mattie Miracle to the hospital staff. It was nice to get connected with Courtney, who is the Hospital's child life specialist! This Center is formerly called the Hospital for Sick Children.  http://www.hscpediatriccenter.org/

I am posting the blog early because as soon as Peter's plane lands this afternoon we are driving two hours to Winchester, VA. We have been invited to give a two hour presentation tomorrow to an organization called Special Love. Special Love is a nonprofit that provides cancer families a network of support, made up of other patients and families who know and understand the trials and triumphs of the cancer experience. Special Love is hosting a parent retreat this weekend and we are doing the morning's educational session. The title of our presentation is "Childhood cancer and its psychosocial impact.... A parents' call to action to create a National Psychosocial Standard of Care." We are donating 30 Ziploc bags of candy to the organization for the December Holiday party they are hosting for children and families with childhood cancer. 

http://www.specialove.org/

Thursday, November 20, 2014

Thursday, November 20, 2014

Tonight's picture was taken on December 7, 2008. As you can see Mattie was already in the Christmas spirit with lights strung in his room. With each hospital admission, I always decorated Mattie's room. It was a true labor of love. Because I would decorate and then have to pack everything up when we were discharged. Just to start the process all over again, many times days later when he was readmitted. Moving in and out of the hospital was impossible. It meant moving all sorts of supplies, toys, and clothes. In essence it was basically like moving one's home! However, to me it was important to have some sort of normalcy for Mattie. Decorating provided that, otherwise without touches of home, the hospital environment was very sterile and cold looking. 


Quote of the day: Strength of character isn't always about how much you can handle before you break. It's also about how much you can handle after you've broken. ~ Robert Tew

Today we removed 1500 pounds of candy from our home! I was thrilled to see so much of it go!! Of course we still have much more to get rid of, but to see this large mountain of candy disappear was a positive sign. Yet the question is how was it moved from our home, through our corridors, and into a minivan???! I know if we had to do it alone it would have taken FOREVER!!! 

The answer is we had a lot of help!! Our complex staff mobilized forces today! They showed up at our doorstep with several rolling bins and literally in ONE fell swoop loaded all 1500 pounds of candy! I couldn't get over what I was seeing!!! It was operation candy loading!!! I am so happy I had my camera and could take photos of this outstanding work in motion!

This was our fantastic Columbia Plaza team. Standing up from left to right is Ollie and Bryon and kneeling down from left to right is Mr O., John, Michael, and Vicki. 

This minivan was filled all over with candy. It had a full trunk, the third row of seats was stacked with candy, as well as all the other seats! 

Peter snapped this photo and you can get a feeling for the filled bins!

When we arrived at Georgetown University Hospital, we were greeted by the team of child life staff. From left to right are Jess, Katie, Vicki, and Linda. Needless to say, there was a ton of candy to cart away and store, but these ladies handled it like champs! This is old hat for them, and with each successive year, they some how make it look easier! Which of course it isn't! Candy is heavy, it is hard to move, and these carts are not easy to steer and manipulate. But their 'can do' attitude is what makes them so successful at their challenging jobs. 

While visiting the Hospital, I also ran into Jey, Mattie's CT tech. Or as Jey used to call himself, Mattie's "big brother." Coming to Georgetown used to feel like visiting our second home, but now I am very aware of the fact that so many of Mattie's professional caregivers are no longer working at the institution. This is hard to swallow and accept. To me what makes a place special are the people, NOT the place itself! Once all the people we love are gone, then what is there??! That is a challenging question! My loyalty is to people, and as people disappear, with them they also take a piece of Mattie's memory. I once knew I could turn to people who knew my journey, shared my journey, and helped me remember my son as I walked through the doors of Georgetown. Now with the changes taking place, this is yet another loss Peter and I face, in a long line of losses that have taken place since the day Mattie died. 

Wednesday, November 19, 2014

Wednesday, November 19, 2014

Tonight's picture was taken in November of 2008. Mattie was home recovering from his second limb salvaging surgery and our living room was transformed into a hospital. It was hard to get Mattie comfortable both physically and emotionally at home and I will never forget our Thanksgiving Day and Christmas that year. Mattie was so incredibly depressed and the notion of watching the Thanksgiving Day parade even today brings back bad memories to me. Despite all the chaos, our cat Patches, took her position right by Mattie's side! I affectionately called Patches, NURSE PATCHES, because she seemed to instinctively know when her presence and attention were needed.


Quote of the day: Great opportunities to help others seldom come, but small ones surround us every day. ~ Sally Koch

I went to Falls Church, VA today to make our first candy delivery to the Ronald McDonald House. Some history of the network of Ronald McDonald Houses....... The first Ronald McDonald House opened in Philadelphia in 1974. It came about because of the experience of Fred Hill (Philadelphia Eagles tight end) and his wife, when their 3 year old daughter, Kim, was diagnosed and then treated for leukemia. The Hills camped out in hospital waiting rooms and corridors for three years and saw many other families who did the same. Many families had traveled far to get their children medical care and could not afford hotel rooms. The Hills started a small charity. Jim brought an advertising executive, with ties to the McDonald's corporation, in to help with fundraising. The effort escalated until the first Ronald McDonald House was established as a residence for families of children being treated at the Children's Hospital of Philadelphia. Today there is a growing network of more than 300 Houses around the world.

In order to qualify to stay in such a House, you first need to have a child who is sick and hospitalized and you need to live 25 miles away from the treating hospital! This particular Ronald McDonald House is located near Fairfax INOVA Hospital. To put this into context, from where I live in DC to Fairfax INOVA Hospital is technically 16 miles in distance, so if we were to add an additional 9 more miles I would qualify to stay at the Ronald McDonald House. My point is 25 miles away from the treating hospital isn't geographically far to qualify for such a stay! http://www.rmhc.org/ronald-mcdonald-house


When I went to drop off the candy, I was given a wonderfully warm greeting by Barbara, the manager of the House. Barbara gave me a tour of the facility and I got to meet the executive director as well. There are many aspects about this facility that make a great first impression: 1) the cleanliness, 2) the homey and warm feeling of the space, 3) the bright and airiness of the rooms, 4) the attention to details, and 5) the art work. This is the kitchen space. I downloaded this photo from Google images, I did not take it myself! When I saw the kitchen today it was being cleaned and was spotless! But what I liked about the kitchen was it did not look like an institution.... but colorful, like one's kitchen at home!

This room is entitled the "Oasis." It is meant to be just that, a quiet and reflective space for families to go and be by themselves. To be with their thoughts and feelings, without having noise and distractions. 

This is just one example of the creative art work on the walls.....Helping Hands! It is a decoupage of hands and on the hands are some meaningful messages!

This wonderful playroom was designed by Barbara herself! She takes great pride in it as she should. When she described what the room used to look like, this is most definitely a massive improvement. Of course when I looked at those foam puzzle tiles on the floor, I immediately thought of Mattie! Mattie loved these puzzle foam pieces. He could play with them for hours and as I said to Barbara today.... no one should have to need her house, but if they do, it is wonderful that it is available to them. It is also wonderful that they have access to someone as caring and dedicated as she is looking out for them! After all, she did not know me from Adam, yet after receiving my email and hearing my story, she greeted me at the door with a hug. That said a lot immediately to me about her!