Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 30, 2017

Saturday, September 30, 2017

Saturday, September 30, 2017

Tonight's picture was taken in June of 2009. Mattie went over to a friend's house who had a parakeet. This was Mattie's first encounter with a parakeet that was someone's pet. Honestly Mattie did not know what to make out of this encounter. Part of him was intrigued but the other part of him was scared. Since Mattie did not like the claws of the bird on his head or skin! But this photo to me is priceless! You can't help but see Mattie's beautiful bald head with the contrasting green of the bird, and to me the bird looks like it wanted to whisper something in Mattie's ear. 


Quote of the day: When you show deep empathy toward others, their defensive energy goes down, and positive energy replaces it. That's when you can get more creative in solving problems. Stephen Covey



My lifetime friend, Karen, sent me an article this week about the effective use of rescue dogs in the NYC school system. The article was great and what I found intriguing is that there is a whole curriculum used with these rescue dogs that is now being implemented in 1,000 schools in 36 states across the Country. The curriculum was designed by a Yale researcher and it is called Muttigree. Interestingly enough the curriculum and program are funded by Cesar Milan. Peter and I are big Cesar Milan fans, as we have been watching his dog show called the Dog Whisperer on TV even before we got Sunny. Milan is intriguing because he specifically says he trains people and rehabilitates dogs. There is a real psychology to interacting with a dog, and dogs are very sensitive to their humans and in turn help us learn fascinating things about ourselves. But they teach us in very subtle ways. Not with words but with their actions and behaviors. 

The Muttigree program is used to specifically help teach empathy and compassion in pre-K to 12th grade students. I found these articles so interesting that I forwarded them to Mattie's school. Since every school curriculum now tries to integrate in empathy and resilience, which sounds lovely, but how do you teach this to a 5 year old or any aged kid for that matter? These are complex terms that can be better operationalized with hands on, real world examples. This is where a dog comes in, and what a wonderful way to rescue a dog from being euthanized. It is hard to imagine that 3-5 million dogs a year are killed in shelters in the USA. Makes you wonder why someone would go to a breeder to get a dog, when so many are in need of a home at our local shelters. 

This is what the Muttigree curriculum has been suggested to do:

  • Enhances students’ abilities to succeed academically
  • Improves student behavior
  • Encourages compassion and empathy
  • Promotes student interest in school
  • Positively influences school climate
  • Engages students, teachers, administrators & families
  • Increases awareness of and desirability for shelter pets
  • Positively impacts the community as a whole


Prior to getting Sunny, all of this would be a theoretical conversation with me. But having Sunny in my life, enables me to understand exactly what is being discussed in these articles. It isn't only my reaction to Sunny, but it is complete strangers on the street who react differently to me when they see Sunny. So many want to pet him, to get to know him, and thereby have a conservation with me. There is something very safe about being around one of our furry friends and I can only imagine how having a dog present in a school can change certain environmental dynamics. 

The picture above, I pulled from one of the articles below. Notice that this dog in the photo looks like Sunny.... a border collie mix, with freckles included. Rescue dogs are hand selected to match the teacher's lifestyle and classroom. So there is thought put into this process, because it doesn't sound like Muttigree dogs are necessarily trained to work in schools. But instead are assessed by their given temperament! Which I get, because I could train Sunny all I'd like, but he has a certain temperament..... gentle, patient, but also head strong! You can't teach gentle and patient! You either have it or you don't! 


Where the teacher's pet sleeps in a dog bed:
https://www.nytimes.com/2017/05/31/nyregion/school-comfort-dog-program.html

The Muttigree Curriculum:
http://education.muttigrees.org/mutt-i-grees-curriculum-calm-confident-and-caring-kids

September 29, 2017

Friday, September 29, 2017

Friday, September 29, 2017

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from his lung surgery. It was important to get Mattie up and moving, but that wasn't easy. As you can see Mattie was transferred to a chair, but was exhausted. Rarely did Mattie ever nap, even when healthy. The only time we saw this was when he was totally depleted. Even when fighting cancer, we rarely saw Mattie knocked out. So when we did, we understood his level of fatigue. Guarding over Mattie was "Sunshine," his albino boa constrictor stuffed animal. Sunshine was given to him by his buddy with osteosarcoma, Jocelyn. Sunshine still sits in Mattie's bedroom even today. 


Quote of the day: Had any poet adequately described the wretched ugliness of a loved one turned inside out with grief? ~ Kate Morton


In July of 2013, I was introduced to my friend in cancer. She had just lost her only child to cancer the month before and had the where with all to ask her doctor to be connected to another family who also lost an only child. My friend seemed to understand immediately the magnitude of her loss and wanted to talk to someone in her very shoes. We can debate this issue from all angles, but from my perspective losing an only child is a very difficult loss. Not that any child replaces another, but when you lose your only one, things change for you overnight. Today, my friend's son would have turned 17. He died at age 12. It is hard to believe I have known her all these years, and like Mattie, I have watched her go through middle school and now high school without her son. In many ways, we have each other to validate certain feelings. Ironically since meeting my friend in 2013, we have written to each other EVERY DAY for four years. Clearly our conversations have evolved over the years, but in a way, I know all her significant dates, as she knows mine. So when we feel the rest of the world may forget about us, we don't forget about each other. It isn't like we had a chat about this, we aren't necessarily even conscious of it, until I reflected on her loss today as I was sitting down writing this blog. 

Meanwhile, in passing today I met an acquaintance I know from Mattie's preschool days. She mentioned to me that her daughter announced to her today that she was having her first baby. So she was going to be a grandmother. Naturally I expressed my happiness to her and congratulated her. Because that is the SOCIALLY ACCEPTABLE thing to do. Thank goodness though I have filters, because when someone tells me they or someone they know is going to have a baby, I internally have two VERY distinct reactions. The first is...... well I hope this baby will be cancer free and you will never know what I do, which is 46 children a day are diagnosed with cancer and every thirty minutes in the USA a child dies from cancer! But my other internal reaction is..... why tell me this? Does anyone think I really want to hear about another's joy? I know that sounds very mean and very selfish. Which typically I am not, but when it comes to this issue, it sends bells and whistles off in my head. It makes me frustrated, irritated, and overall angry. Angry because I am supposed to understand your joy and happiness, while you don't have the foggiest notion what this news just did to me!!! 

I came home today angry, bordering on hostile. Of course for a while I couldn't pin point what was causing this, until I walked with Sunny and cleared my head. But between my friend in cancer celebrating a birthday without her son and this other woman telling me her good news, it was too much for me to handle. So internally I snapped. After all, who am I going to snap at!? I can't snap at the woman delivering the news, I can't snap at others on the street..... well I can snap at Peter and do, but as usual it is misdirected anger. Again it is a blog posting with no answers to my many questions about people! Nonetheless, even if I receive no responses to what I am expressing, I find thinking and processing through what I am feeling is therapeutic. 

September 28, 2017

Thursday, September 28, 2017

Thursday, September 28, 2017

Tonight's picture was taken in June of 2009, as Mattie was recovering from his sternotomy, to remove nine tumors in his lungs. There were times during Mattie's treatment when he just wanted to go outside and get fresh air. So literally taking him to the hospital rose garden was a production with IV's, oxygen, a wheelchair and nurses in tow. The nurse on the left in this photo is Miki. In fact, I just ran into Miki this week while pushing the Mattie Miracle snack cart at the Hospital. Miki is one of Mattie's memory keepers and she understood the importance for Mattie, Peter, and me to get out of the hospital and have a change of scenery when possible. It naturally took these nurses off the unit and they had to balance their other duties, but they are amazing women, who accomplish the impossible to help their little patients. 


Quote of the day: The dead leave their shadows, an echo of the space within which once they lived. They haunt us, never fading or growing older as we do. The loss we grieve is not just their futures but our own.Kate Mosse


Why is it when someone dies, our friends and family may pause for a brief moment to acknowledge the loss, but then as a few weeks go by we are expected to return right back to normal? This is more of a rhetorical question because I do not really expect an answer, nor do I think there is just one answer to explain this phenomenon. This week alone, I was talking to two different friends. Both of whom experienced a significant loss in their lives, one a mom, and the other a brother. Keep in mind that these deaths did not happen months or a year ago, but instead PLURAL.... years! The fact that years drift by, lulls others around us to think that we are okay with the loss. That we know it is a part of our lives but we have managed to 'move on.' Two of my LEAST favorite words. 

It is hard enough managing friends who knew Mattie and know our story, but what happens when you make new friends and these friends know NOTHING about the trauma you experienced? It becomes a fine line of deciding whether to share this information or to what extent makes sense to share. I hear this issue arise with many people I have met who have lost a child. But it is applicable really to any significant loss. Once you lose someone significant, your world turns into pre and post. Pre-loss and Post-loss! You measure everything and everyone in your life against these two points in time. 


Speaking of losses, today would have been my maternal grandmother's 110th birthday! It is hard to imagine as it doesn't seem like that much time has passed by without her in our lives. My grandmother was the one in pink sitting down in this photo. In fact, I got this photo from my lifetime friend, Karen. Apparently her mom has it sitting on her dresser. This photo was taken during my grandmother's surprise 80th birthday party. She was truly shocked that evening and had no idea my mom planned this event. It is a sad commentary that my grandmother never got to meet Mattie, as I think he would have challenged her in different ways than I did as a child (my grandmother lived with my parents while I was growing up, and was a significant part of our family). But it is my hope that in some shape or form Mattie and my grandmother are together now, celebrating with a vanilla cupcake. Ironically they both liked vanilla, and hated chocolate!

September 27, 2017

Wednesday, September 27, 2017

Wednesday, September 27, 2017

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic and sitting at the art table. As you can see, his art therapists gave him a big bin filled with water, for water play. Mattie had his boat in there and other objects. He was even blowing bubbles. But there was a reason behind all of this as well, in addition to it being fun. We all wanted Mattie to exercise his lungs as he was recovering from his sternotomy, lung surgery. We knew getting Mattie to use a spirometer wasn't happening, so instead, we made lung exercises fun. Mattie was the kind of kid that forced all of us to think outside the box. I of course had years of practice under my belt with Mattie prior to cancer, but his therapists got up to speed quickly. 



Quote of the day: To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McEntire


Mattie Miracle interacts with mental health professionals all over the Country. We have the opportunity to do this for two reasons. The first of which is we generated the vision to create Psychosocial Standards of Care. As such, we had to pull health care professionals from all over the Country to be involved in this historical endeavor. But second, once the Standards were published, we believe it is important to attend conferences and  present the Standards to various health care groups. The network of mental health professionals who assist children with cancer in our Country is not a small number, but it also isn't an overwhelming number of people either. So once you meet several of the key leaders, you would be amazed at the incredible network of other professionals you can access. 

So what's my point to this? Well yesterday I received an email from a psychologist in California. I have met her twice at conferences. She is very familiar with our story, with the Standards, and values our Foundation's mission. In fact, she told me that the Standards gave her actual documentation that validates her job with her institution and administration. The email she sent me this week had me chuckling. So much so, that I still haven't responded to it. She told me she is coming into DC for a conference and wants to meet me again. However, here is the funny part! She wants to come to Mattie Miracle's office, get a tour of the space where "the Magic happens" and to meet our staff. Do you find this as humorous as me?! I am still laughing, even as I type this. It actually is an incredible compliment because she views us as a major operation. Little does she know that I work the "magic" from Mattie's bedroom, at a small deck, with NO STAFF. I will share the reality with her shortly, but tonight's quote is so right....... you need a funny bone to survive and thrive as a small business. 


September 26, 2017

Tuesday, September 26, 2017

Tuesday, September 26, 2017 -- Mattie died 419 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was home from his third massive surgery, a sternotomy. He wanted to take home his hospital bin, which actually came in handy as Mattie LOVED to play with water. Taking a bath wasn't something Mattie wanted to do anymore, once he had his broviac catheter inserted into his chest. We weren't going to argue with Mattie about bath time, since I think this made him feel very vulnerable being in water after his cancer diagnosis. Bath time was when Mattie used to have water fun. So in lieu of that, we migrated to a basin of water for him to play with. As you can see, Mattie created his own Sponge Bob Square Pants character. The main reason Mattie loved Sponge Bob was because he knew I disliked him greatly. In any case, what you can't see from this photo was that Sponge Bob took a leap into the basin and Mattie was seeing how well he could swim. 



Quote of the day: Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. Hubert Humphrey


This afternoon, I returned to Mattie's hospital to push our Mattie Miracle snack and item cart around the pediatric units. Of course no one realizes what Tuesdays mean to me, and certainly the impact of going to the Hospital on a Tuesday. The day that Mattie died, a Tuesday! I never look at Tuesdays the same way anymore. 

I go to the Hospital monthly to push the Cart. I feel it is important to do this direct service work to see the cart in operation and to personally interact with families. Typically families are too tired, overwhelmed, and focused on the care of their child to have a meaningful conversation about the cart with me. I totally understand that, and go into my visits with no expectations. The only expectation is to provide a service to others. 

Today was a very different visit. In one of the units, a couple came outside of their child's room holding their newborn who was hospitalized. I am telling you this baby was ONLY days old. The little one was in her father's arms and you could tell how proud and scared he was! In any case, the father outright asked me who provides this cart and what is the story behind the cart! NO other parent has ever asked this, as parents are typically grateful and focused on the the free items coming their way, to help them make it through the day. This dad literally started by asking me about the physical nature of the cart, why it was orange and then we moved into very meaningful questions. So I told him about Mattie, about the Foundation, and why I felt it was important to provide sweet treats to families in the hospital. 

So why? Because when Mattie was in the hospital, our care community brought me treats daily! Which is when my chocolate addiction started! In addition to treats they brought us snacks and dinners daily for over a year. Given that I found this SO helpful and SO generous, Mattie Miracle wanted to continue the tradition our care community started but on a grander scale. As I was telling this dad and mom this story today, I could see they were visibly moved, so much so, that they wanted a brochure on the Foundation and told me they would tell Mattie's story to other people. Needless to say, I think my story made them appreciate the baby in their arms even more than prior to our chance meeting. They seemed to express awe over having lost a child to cancer, and here I was in the same hospital that Mattie died in, and I am funding a snack cart and pushing it myself to help others. Rarely do I get such feedback about our work, and of course I don't do it for this feedback. But at the end of the day, Mattie Miracle wants to be supporting items and services that positively impact the lives of families caring for children who are hospitalized. 



September 25, 2017

Monday, September 25, 2017

Monday, September 25, 2017

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic that day and behind him in a wheelchair was Jessie. Jessie was one of Mattie's outstanding art therapists. They were having a wheelchair race in the clinic, something that Mattie appreciated. Despite the tight space within the clinic, that did not stop the fun from occurring. Which to me speaks to the level of skill of Mattie's art therapists. They always thought outside the box and put the child's best interests FIRST. 


Quote of the day: I have found that when you are deeply troubled, there are things you get from the silent devoted companionship of a dog that you can get from no other source. ~ Doris Day


I have no idea what woke me up at 2am this morning, but I was wide awake and couldn't go back to sleep. I got up several times and tried walking around but then decided to turn on the TV. I have a pair of head phones by my nightstand, so I can listen to the TV without Peter hearing it. Fortunately the light of the TV flickering did not seem to bother him last night. I was up for a good two hours. Not really sure why! Around 2:30am, I was sitting in bed watching TV and trying to be quiet, and then all of a sudden I feel a great big thump on the bed. Sunny apparently heard me stirring and came upstairs to find out what my issue was, since it was out of character for me to be up at that hour. Sunny comes on our bed every morning between 4 and 5am. But 2:30am was early even for him. 

Typically when Sunny jumps on our bed, he heads to Peter's side, since Peter is the first one up in the morning. Sunny keeps a close bead on Peter. But at 2:30am today, Sunny did not head to Peter, but instead directly to me. He literally sat by my side and put his head right near my hip, and put a paw on my lap. We held hand and paw together for at least thirty minutes, as he was falling back asleep. This was a totally unusual occurrence and a part of me felt that Sunny understood something wasn't right.

I unfortunately do not know much about Sunny's background, as he was rescued from South Carolina. But I am convinced that Sunny was someone's emotional support dog. Not a therapy or service dog, which requires more training, but he shows all the classic signs of being used to providing a human comfort. Desirable characteristics in an emotional support dog are similar to those for therapy dogs, with a few exceptions. Most people seeking a dog for emotional support are looking for a loyal, highly-bonded pet. Ironically therapy dogs are more indiscriminate with their affection. Emotional support dogs are tasked with maintaining the mental well-being of their pet parents, usually through their calming presence and affection. 

Sunny has many skills but his top two...... 1) he bonds closely with one owner, and stays by that person's side. In Sunny's case, I am that person. and 2) Sunny craves affection and loves to give it. You can just see his whole demeanor change when you pet him. He absolutely loves it and if dogs could smile, that is Sunny! Mind you I did not pick Sunny because I wanted an emotional support dog, but in essence we are a good match for each other. 

I can't thank Sunny for his companionship last night, but I have a feeling he knows he is loved in many other ways. In fact, today when I came back home from being out, I bought him a home baked oatmeal dog biscuit! Needless to say, it was a hit and demolished in minutes!

September 24, 2017

Sunday, September 24, 2017

Sunday, September 24, 2017

Tonight's picture was taken on October 10, 2009. The date of Mattie's funeral and celebration of life reception. We created two programs for that day. One for the church, and the one you see here for the celebration of life program. I can't take you how long these programs took to generate. Perhaps it was the finality of the content that had to be created or worse, why the programs needed to be created in the first place. 



Quote of the day: Without reflection, we go blindly on our way, creating more unintended consequences, and failing to achieve anything useful. ~ Margaret J. Wheatley


On occasion, I go back in time and read the blog from 2008 and 2009. Not that certain aspects of Mattie's treatment and death do not remain inside my head, they do, but the blog inserts real time facts! Facts that help to give context to my memories. For nine years I have written this blog daily. It is a large commitment but I feel fortunate that I stuck with it because it captures thoughts, feelings, and their specifics that I might have forgotten. 

Mattie died on September 8, 2009. However, given the nature of Mattie's battle and death, I was in no state to plan and host a funeral immediately thereafter. Given that we cremated Mattie, this enabled us to take a month and think through how we wanted Mattie to be remembered. It literally took us all that time too, since Mattie's funeral and celebration of life service were held on October 10, 2009. 

I can recall trying to plan the funeral at the church. Believe it or not, I actually yelled at the priest. I found him to be totally insensitive and I had to help him put his demands into context with our loss. Fortunately he wasn't the priest who presided over Mattie's funeral. Jim, the priest we selected to conduct the funeral is amazing. I met Jim at the George Washington University and I always credit him for giving me my first mental health client to counsel, as she was his parishioner. Jim gave Peter and me pre-cana, so that we could get married in the Catholic church, and he even baptized Mattie. So it seemed very fitting to ask Jim to do the impossible for us. Naturally he did a beautiful job, as hundreds of people attended Mattie's funeral. 

After the funeral, we held a celebration of life service at the Visitation School, only blocks away from the church. I will highlight this event in October, because I haven't done this for years. But 8 years ago today, you will see my reflections of the day below from the blog. It is hard to imagine this but shortly after Mattie died we left our home yet again. This time it was to live with my friend Ann. Ann's dad was dying and her husband was going out of town for two weeks because of work. She was going to have a hard time balancing three young children and her dad and mom. So literally Peter and I packed up (as we were excellent at that by then, because we constantly were shuttling back and forth between a hospital or home for over a year), and two weeks after Mattie died we moved into Ann's house for probably three weeks. At the time, we did not even think twice about doing this since Ann helped us significantly when Mattie was ill. We felt that it was our turn to help her, and of course we were skilled at this point in helping someone die. 

Can you just picture this? We operated on a 24 hour a day, 7 day a week schedule for 15 months. Caring for Mattie's every need and managing health care providers around the clock under the most dire of circumstances. It was very hard to come off of this daily crisis, to not having Mattie to take care of. All I know is back then after Mattie died, I needed little to no sleep, it did not matter whether I ate or not, and regardless of these conditions, I operated on 100% capacity. The body has a way of surviving actually on very little. Some people become stupefied without sleep, and I probably did in the beginning of Mattie's battle, but over time, my body and mind adapted to crisis mode. Which is most likely why I agreed to move into Ann's house and help with her father. I had excess energy, didn't need sleep, and I needed a purpose and mission. As I was very lost after Mattie died. My energy went from caring for Mattie in the hospital to now caring for an 80+ year old in a care facility. I practically lived in the nursing home, and some nights slept in their room. Meanwhile, while I was doing this, Peter was at Ann's house helping with kid duties...... school pick ups, school activities, helping with homework, laundry, errands, you name it! It was only after the fact, when I reflect back on all of this, and I realize my decisions weren't in Peter's best interests. Because early on after Mattie's death, Peter had trouble and almost felt great discomfort being around healthy children. I eventually got there, but that did not happen for me until a year or so after Mattie's death. 

Putting this more into context, Ann's parents lost their son to cancer. So in the midst of helping her parents, I also got to hear about their son, and their reflections on loss. I am not sure given their generation, that they verbalized loss like we do today, but yet given my loss, you would be amazed at what they were able to say to me. Mainly because I think they understood that I was in it and could understand. I always reflect back on this time that I helped Ann's father die, as being unusual. Perhaps my decision to step in and help may seem odd to my readers, but to me it made sense, and upon reflection (other than the ramifications on Peter), I would still have done the same thing today. Ann's parents gave me a reason to get up each day, to interact with the world outside of a hospital, and to invest in the lives of other people around me. I am not sure what would have happened without this! I learned in the end, after our many years together, that Ann's mom considered me "her angel" until the end. 
  

------------------------------------------------------------------
From the Blog .....September 24, 2009:


Despite being away from our home, I had trouble falling asleep last night. I went to bed at 3am, and was up by 8am. I heard Ann’s children this morning, as they were getting ready for school. The sound of excited and energetic voices, quick movements, and simply put “life” fills Ann’s house. As I sat in bed listening to all of this, a wave of sadness hit me. My home is no longer like this, and won’t be like this ever again. Children have a way of breathing life and perspective into the darkest of circumstances. If you doubt this statement, then I invite you to spend some time at the Lombardi Pediatric Cancer Clinic. There you will see children daily who are fighting cancer, are exposed to toxic chemicals, and yet despite all of this, play, and engage with each other. It is almost as if the disease can’t hold back their inner joys and happiness.

Peter and I had a chance to work on some details for Mattie’s celebration of life ceremony and reception. It is very hard for Peter and I to even think this through, and I find I am putting a great deal of pressure on myself regarding this event. I feel as if this reception and ceremony are honoring Mattie and his incredible life, and therefore, they need to be something special. Is it possible to do Mattie justice during such an event? I don’t know, but when I am in a quandary over something, I sometimes become paralyzed and unable to move forward and plan appropriately. I worry that Mattie’s memory will be forgotten in the hearts and minds of those around him, once the funeral is over. In part, this could be why I am procrastinating with these plans, I don’t want him to be forgotten, and I most certainly am not ready to come to any sort of closure or acceptance of Mattie’s death.

I had lunch with Ann today in her parent’s room, as we were awaiting the arrival of a new bed for her dad. Exchanging medical equipment is NO easy task. In fact, we are still having a hard time getting the company in question to pick up Mattie’s oxygen tank and other supplies from our home. It is ironic the skills and insights I have picked up this year by caring for Mattie. Peter and I have been forever changed, and we just know how certain things operate, things, which require an inordinate amount of patience, patience that you DON’T have when you are tired, worn out physically and emotionally from caring for a loved one. When I was caring for Mattie, I was too absorbed in the daily grind to even be aware of the insensitivities of the health care system (though I did report MANY), but as I try to help Ann, I can see just how ludicrous all of this is. 

Tanja, Ann, and myself were quite a team today as we helped to switch Sully’s beds and reorganize the room a bit to accommodate this new addition. Tanja commented to me that my PICU training has come in handy. I think she is right. I have learned to organize things in VERY small spaces, and I can do it quickly. After all, Peter and I would move in and out of PICU rooms weekly. There was NO time to dilly dally around, and yet we wanted Mattie’s room to always look fun and alive. I am sure the PICU staff got a kick out of Peter and I with our movable boxes and bins of decorations. But it was what we needed to do to survive 13 months of torture. Nonetheless, when I sit back and evaluate things, I am left with the conclusion that Mattie taught Peter and I a great deal about medicine, nursing, health care, and advocacy. These are painful gifts, but gifts that enable us to work effectively with almost any health care worker and provider.

This afternoon, Mary and I had the opportunity to sit together and look at the wonderful 40th anniversary photo album that Ann created for her parents. When you can learn about someone’s past, and someone wants to share this with you, it is a very special and almost sacred time. Mary and I looked at her wedding pictures, as well, and she relived what that day was like for her. Mary’s 40th anniversary album was truly touching, and one thing I clearly saw jumping off the page was that these two people are very loved and have spent their life caring for others rather selflessly. In the album were messages from friends and family. One of the messages happened to be from Ann’s brother, who passed away. Mary had me read this message multiple times, and was deeply moved and happy to have his words on paper. Of course, based on my circumstances, I couldn’t help but imagine how powerful hearing your deceased son’s words are, and I wish Mattie had been old enough to actually write, so I could reflect on his writings.


This evening, Margaret (my friend and Mattie’s first preschool teacher) came by to say hello, and dropped off more goodies for us. Mary was hoping to see Margaret today as well, and I am happy Margaret could visit with Mary while she was having dinner. Eating alone is never a good feeling. As I sat with Sully today, I naturally can’t help but think about Mattie. I remember someone at Georgetown telling me that death is natural, but that there is nothing natural about watching the process of death. So true, and it seems to me, as you sit and watch someone die, you can’t help but be flooded with memories of that person’s vibrant life and wonder about your own life and its meaning.