Friday, March 2, 2018

Friday, March 2, 2018 

Tonight's picture was taken in November of 2002. Mattie was seven months old and Peter snapped this photo of us in front of the oak tree near our home. Mattie came to greatly appreciate this oak, because when he got into his tent moth caterpillar collection phase, the leaves from this tree, were the only food the caterpillars would eat. They refused all other leaves. Then of course Mattie began to understand that the oak produced acorns. That became another collection. Mattie had various collections, but in this case he loved sharing his findings, as he typically gave people in his life an acorn gift. In fact, Mattie's occupational therapist received one acorn each week. She had quite a collection going by the end of the year! 


Quote of the day: If when I am gone thou would’st honor me then plant a tree. Some highway, bleak and bare,
Make green with Leaves.
So radiant and fair
And full of leaves my monument
will be, so ever full of tuneful melody.
My monument will be a sight most rare 
Trees planted everywhere.
A highway broad from city to the sea 
Plant this in memory of me. ~ David Wright

We are saddened as Mattie's memorial tree suffered a blow today! This is the third memorial tree that has been planted at his school, because the previous two died, and now the current tree was injured by the 60MPH winds. Needless to say this sight was truly upsetting to us, as a broken tree is not the way we wish to remember Mattie. Nonetheless, it makes us pause yet again because what are the chances that three trees can be affected within such a short period of time?

THE HISTORY OF THE TREES.............The first memorial tree was planted in 2010, and was donated to Mattie's school by his classmates. Mattie loved oak trees and particularly loved collecting acorns, which he would then give to special people in his life. Selecting an Oak to honor Mattie was an easy choice. But that tree died in 2013.

In 2013, a Yellowwood tree replaced the Oak, but the Yellowwood died too. Seeing a trend?

In 2014, another Yellowwood was planted. This was a thriving and beautiful tree that produced amazing flowers timed with Mattie's birthday. Yet today's wind, impaired the tree.


I am sure the School would like to find a way to salvage the tree. But here's the thing..... in this case, I am less concerned about the tree and more concerned about the symbolism of the tree. Which is why I feel like we need to plant a fourth tree. I do not want a broken and less than whole tree to symbolize Mattie. I am particularly sensitive to this given Mattie's battle with cancer, a cancer that left him quite disabled and disfigured. I do not want a tree that mimics what cancer did to his body. I rather see a strong, bold, and vibrant tree that represents the true Mattie.  

Thursday, March 1, 2018

Thursday, March 1, 2018

Tonight's picture was taken in March of 2009. Mattie's best preschool buddy, Zachary, came to the hospital to visit Mattie. In fact, Zachary was very present in Mattie's life even through cancer, with visits both at home and in the hospital. It isn't easy as an adult to visit a hospital, much less a child with cancer. So I can imagine how scary and daunting it must be for a child. Pre-cancer, Mattie and Zachary had a physically active form of play, as they were constantly moving around, running, and jumping. Once Mattie had cancer, the way they played with each other had to change. Again this could have been a game changer for some children, but Zachary found a way to make it work. A special friend.



Quote of the day: Being authentic will get you where you need and want to go, and it will be your path to building the most meaningful and enriching connections with others. ~ Michelle Tillis Lederman


As I mentioned in February 24th's blog, I use an on-line site called Gigmasters to find local vendors for the Mattie Miracle Walk & Family Festival. GigMasters is an event services booking platform that matches your needs with entertainers, planners of weddings, dances, parties, festivals, celebrations and corporate events. They are so easy to use and provide great descriptions and reviews, so you can pick the right person for your event. 

This past weekend, I learned about a whole new service called Roaming Hunger. No one told me about it, I just came across it while doing Google searches. I mention this because it is like Gigmasters, however their focus is food. Roaming Hunger is a food truck booking service that allows people to find food trucks in real time, book trucks for upcoming events, and engage food trucks for advertising and promotional purposes. 

I wanted to replace our ice cream vendor at this year's Walk. However, it is easier said than done to find a food truck that will work your event. You can search for reputable food trucks on-line, but it is time consuming, on top of that, you then have to reach out to each one and explain your needs. By going through Roaming Hunger, you just contact ONE PERSON, explain your needs and requests are then sent out to their food truck network! 

All week, I have been getting ice cream, frozen yogurt and ices vendors contacting me. However, I went with a couple who owns an ice cream store in Leesberg, VA and sells Hershey's Ice Cream. They have agreed to come to the walk and sell (not popsicles like last year's vendor) actual scooped ice cream. They will supply us with 12 different flavors as well as two flavors of ices, and donate 10% of sales. 

So I can officially say, I have lined up all our vendors for this year's Walk on May 20th, and we have more activities than ever before.............................

1. a Challenge Walk
2. Two enormous inflatable moon bounces
3. A corn hole tournament with three top prizes
4. A raffle, with baskets valued at over $500 each
5. Lego displays and hands on activities
6. A 30 minute Reptile Alive show, followed by a 30 minute meet and greet with the animals
7. A magic show
8. Make your own crafts
9. A great DJ
10. professional caricaturist
11. professional face painter
12. Food from local vendors
13. corporate sponsor tables
14. Lawn Games

Wednesday, February 28, 2018

Wednesday, February 28, 2018

Tonight's picture was taken in March of 2009. I will never forget this moment in time. Mattie's child life specialist, Linda, invited Mattie to take part in the ribbon cutting event of the child life playroom. When we first entered the hospital in August of 2008, there was NO playroom in the pediatric units. Not until several months into Mattie's treatment, when a playroom was actually funded and constructed. Once it was built, it was one of Mattie's favorite places to visit. Linda understood what the room meant to us and she definitely understood that Mattie thrived on responsibility. He loved being a part of that special day and using a big scissor to cut the ribbon on the door. Pictured around Mattie was the chief of pediatrics at the time and the current president of the Hospital, Michael Sachtleben.


Quote of the day: The only good thing about times of adversity is that you realize who your real friends and fans are – and the rest go away – which in my mind is an OK thing. ~ Pete Wentz

I went to visit my friend Margy today who was diagnosed at the end of January with stage 4 ovarian cancer. Margy has already survived thyroid cancer, and is a cancer survivor in her own right. 

Margy's sister, Nancy, is in town this week visiting her. So I got to meet Nancy for the first time. However, Nancy and I have communicated numerous times by email, as she is a faithful donor to Mattie Miracle. It was lovely to meet her in person and I am impressed with the love and support being shown to Margy. Because unfortunately Peter and I have learned that adversity doesn't always bring out the best in people. 

Margy's husband takes a selfie of all of us each time we visit. I am so happy he does this because I think every aspect of the cancer journey is worth chronicling and photographing. It serves as a remind of what you have experienced and managed through, but at the end of the day, these visuals serve as our legacy. 

When I took photos of Mattie, I never thought I was doing that out of fear he was dying. Instead, I photographed each day because he was living and to me every aspect of Mattie's life was worth documenting. I did this when he was well, so I just continued my memory making while he had cancer. As I always say..... thankfully I did this, because now these photos of all his seven years are priceless to us. 

As I left Margy's house tonight, look who was greeting me!!!! A large Mattie moon. I took that as a sign! Or as Margy would say this was a "Godwink."

I heard her use this term today and I stopped her! Mainly because I never heard it before, so I looked it up. 

A Godwink is what some people would call a coincidence, an answered prayer, or simply an experience where you'd say, "Wow, what are the odds of that!"


What do Godwinks mean? Think about when you were a kid and someone you loved gave you a little wink across the dining room table ... Mom or Dad or Grandma. You didn't say, "What do you mean by that?" You knew. It meant: "Hey kid, I'm thinking about you right now." That's what a Godwink is too: a message of reassurance from above, directly to you, out of seven billion people on the planet, saying "Hey kid ... I'm thinking of you! Keep the faith! You're never alone."

Tuesday, February 27, 2018

Tuesday, February 27, 2018 -- Mattie died 441 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was home between treatments and you can see two things for sure. First, Mattie wasn't putting pressure on his right leg. He never did post-surgery, as Mattie was never able to walk independently again. But the second things was, look at Mattie's room. Mattie's room became a warehouse filled with toys and gifts he practically received everyday while in treatment. I was unable to keep track of things, so instead they went into piles. Also notice the aeromattress on the floor. When we were home, this was where I slept while Mattie was in his bed. Because Mattie was hooked up to all sorts of IVs, he couldn't be left alone at night, especially as he needed help using the bathroom. After Mattie died, it took me YEARS to clean out this room. Now of course we use it as our Mattie Miracle work space. 


Quote of the day: Strength is the capacity to break a Hershey bar into four pieces with your bare hands - and then eat just one of the pieces. ~ Judith Viorst



Next week, Mattie Miracle is hosting its annual volunteer dinner. How did this event get started? Well it really started as a planning meeting for our Walk & Family Festival. It was held at a friend's home and finger food was served. But food wasn't the main reason for coming. Since that time, this event has evolved out of a home, into a restaurant, and now to a hotel. I really think in the beginning of the Foundation's history, I needed a lot of help brainstorming the Walk, which is why the planning meeting was crucial. Back then, I wasn't long on ideas and I certainly did not have the energy to devote to a fundraiser. As the journey of grief was all encompassing. However, with time this changed, and I would say the bulk of the Walk is my responsibility. It's a rather daunting proposition, because without these funds we can't run many of our programs and initiatives. 

Though I plan, coordinate, and do a great deal of the heavy lifting for the Walk, I can't do it alone. Especially on the day of the Walk, this group of dedicated volunteers are miracle workers. My core group of volunteers are invited to our annual appreciation dinner because Peter and I know how lucky we are to have these friends. They have been with us long term and are generous with their time, skills, and resources. The event goes smoothly because of these individuals who run activities, fundraise, and help market the Walk. 

I feel like a juggler. One of the things I am planning is next Tuesday night's dinner. On top of that I am trying to finalize Walk sponsors, raffle donors, updating the Walk website, and now just learned today that I have another strategy session for the Psychosocial Standards to plan on March 10. Of which I have to coordinate all the logistics. It doesn't end there, because April is our Item Drive month. 

We invite our friends and supporters to HELP US stock the Mattie Miracle Carts with toiletries in memory of Mattie's upcoming 16th birthday. We ask that all of the items on our AMAZON WISH LIST arrive to us by Monday, April 16. 

We fund and operate a Snack and Item cart at both the MedStar Georgetown University Hospital in Washington, DC and at Children's Hospital at Sinai in Baltimore, MD. These carts provide nutritious snacks, drinks, candy, and toiletry items free of charge to families caring for children with cancer. The carts revolve around the pediatric units three times a week and support families who are providing around the clock care to their children. The carts are greeted with sheer gratitude and appreciation.

Check out our Amazon Wish List:

https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=nav_wishlist_lists_1

Monday, February 26, 2018

Monday, February 26, 2018

Tonight's picture was taken in March of 2009. As you can see I am holding up a huge pretzel. Mattie went through different food cravings. For the most part Mattie only wanted starches, but the type of starch could change week to week. That week.... the food of choice was a big circus pretzel. I literally put a request out to our care community and, lo and behold, pretzels arrived. With the sight of the pretzel, Mattie smiled. I am not sure what I would have done without our support network, because I was just too busy managing Mattie's daily care and needs, that there was no way I could have left the hospital room to meet food or toy requests. 


Quote of the day: Hard work spotlights the character of people: some turn up their sleeves, some turn up their noses, and some don't turn up at all. ~ Sam Ewing


Peter sent me the article entitled, Parental Caring Behavior Matters During Cancer Treatment. I attached the link below for you to see. I think Peter and I are on some sort of mission to not only help children with cancer but to prove this is a family disease. When your child gets cancer, to some extent everyone involved in the care also experiences it. 

Following the medical model, physicians and hospitals are focused on the PATIENT. Of course with children, come their side kicks..... the parents. However, the medical system is NOT designed to manage and treat the entire system. In fact, at times the family can appear to get in the way, especially with doctors who do not like to be questioned or challenged. I think medical personnel have some, and I emphasize SOME, understanding for how scary procedures and treatment can be for the child. But the majority of providers do not take into account the impact of all of this on the parent. 

Which may be why both Peter and I are intrigued by cancer studies that involve parents. The article I read today focused upon parent non-verbal behavior. In fact until this study, parents’ nonverbal behaviors have been rarely studied in relation to childhood cancer care. This research can expand parenting roles clinically in cancer treatment–related procedures (blood draws, scans, port access procedures, etc). Which actually is necessary, since parents pay a crucial role in care and it is vital that the medical team embrace this fact. In addition, such work can encourage nurses to develop educational interventions that aim to advocate for “caring” parents, in order to decrease the negative effects of invasive procedures on the psychological health of both child and parents.


Here are some key highlights of the study:

• Children often report more pain and distress due to procedures than from the cancer itself. Among cancer survivors, prior experiences with distressing procedures can lead to avoiding both regular primary care and monitoring for adverse effects of cancer therapies.
• P-CaReSS is a promising tool for evaluating parental verbal, nonverbal, and emotional behaviors during cancer-related painful procedures. This tool can help to further understand how parental caring verbal and nonverbal behaviors impact children’s experiences.
• Children were found to be significantly less likely to display behavioral (eg., kicking and escaping) and verbal distress (eg., asking for help and screaming) following parental caring behaviors, especially the rarely studied nonverbal behaviors (eg., eye contact, distance close enough to touch, and supporting/allowing). 
• If a child was already upset during the medical procedure, parental caring behaviors (eg., eye contact and supporting/ allowing) reduced child distress. 

The results of this study do not surprise me in the least! I learned the power of nonverbals first hand with Mattie. Mattie was asked to do the impossible, practically every day in the hospital. Once exposed to one fear (for Mattie his initial fear was scanning), then all subsequent tasks he was asked to do led or triggered a fear response. Mattie lived in a hyperalert state and even basic medical tasks could send him right over the edge. Which was why Mattie had to be sedated for scanning. No amount of talking, rationalization, or comfort was going to help him. But I learned when under great stress and fear, TALKING, doesn't help. Hearing someone tell you.... it's okay or everything will be alright, actually makes matters worse. I understood that for Mattie, because it is also true for me. Hearing words for me during times of crisis make me more anxious. Yet non-verbals such as eye contact and touch can truly perform miracles. Which maybe why as Mattie's treatment continued on, his level of clinginess with me increased significantly. He wanted to have my attention constantly and I could never be far, unless he was VERY distracted in an activity. 

Yet medical and psychosocial professionals DO NOT always understand this clinginess! In fact, they view it as something wrong. Which it isn't, because if you really stop to think about what we ask children with cancer to undergo, wouldn't you also need comfort and physical closeness from someone you trust? Which is why studies that highlight the importance of parents are so crucial to overall medical care! Simply said, when you empower the parent to help the child, it psychosocially helps the child and the parent. 


Read the article:

http://www.oncnursingnews.com/web-exclusives/parental-caring-behavior-matters-during-cancer-treatmentrelated-procedures-

Sunday, February 25, 2018

Sunday, February 25, 2018

Tonight's picture was taken in February of 2009. You maybe asking yourself..... what was going on here? This was what a typical physical therapy session with Mattie looked like. Nothing with Mattie was ever ordinary or typical, and this illustrates my point. Mattie's physical therapist, Anna, learned very early on when working with Mattie that she had to think outside the box. She had to be creative to motivate Mattie to want to move his body in therapy. Mattie suffered from great pain and therefore doing therapy wasn't deemed a boring activity by Mattie, but his avoidance of it was due to protecting himself from additional pain. Yet when Mattie had a team of people around him who he liked and cheered him on then he was more eager to participate in the process, and get out of his wheelchair. Pictured behind Mattie were: Jenny (his art therapist), Denise (his social worker), Jessie (his art therapist), and the last person was a physical therapy intern who worked with us only  one time. 

Quote of the day: It takes longer to recover from cancer than to be treated for it. But we have focused so heavily on treatment that we almost entirely neglected the rest of the patient's life. The rest of a patient's life is like a room with the lights out. We don't even know what's in there. There's been such little investigation and study into that. ~ Geoff Eaton (cancer survivor and executive director of a cancer non-profit in Canada)

An article came out today entitled, Childhood cancer survivors found to be at higher risk of mental illness. Ironically what this Canadian study found was exactly what Mattie Miracle has been saying all along, and that is childhood cancer is NOT JUST ABOUT THE MEDICINE. 

Researchers analyzed data from about 4,000 childhood cancer survivors in Ontario as well as 20,000 others in the general population to compare health care use. The findings have implications for mental health supports and parenting those who have survived cancer. According to the article, most children with cancer in Canada now survive (personally I am suspect of this reported FACT). But children are at greater risk of poor mental health outcomes, such as anxiety and substance abuse. Dr. Sumit Gupta, a co-author of the study and a staff oncologist Toronto's Hospital for Sick Children, was actually surprised at the severity of the mental health issues.

I always love hearing when medical doctors are surprised! Especially as it relates to psychosocial issues. As if they can't understand how such issues could possibly arise!!! Worse they haven't even prepared themselves or their patients for their possibility much less explored how to proactively mitigate them. Perhaps physicians work in a vacuum, but unfortunately for patients and families, we are deeply affected by the environment that we are exposed to during cancer treatment. 

Here are the top findings from this study:

• Among cancer survivors who were four years and younger when they were diagnosed, 131 had a severe event (from a mental health issue) during the follow-up period of the study. 
• By age 28, the cumulative incidence of a severe event such as hospitalization or visit to an emergency department for a mental health reason among this group was more than 16%. 
• The most frequent mental health issues included anxiety, substance abuse and mood disorders. 
• The researchers also found that childhood cancer survivors had a 34% higher rate of medical visits for a mental health complaint compared to the general population.
• Dr. Gupta and his team looked at some of the treatments children with cancer receive at a young age to see if the drugs triggered a reaction. The type of chemotherapy didn't pan out as an explanation. Instead, it seems like something about the experience of enduring cancer when young increases the risk of long-term mental health problems.

The last bullet point intrigues me because physicians are looking for a medical explanation for these psychological issues. As it is too far fetched for them to grasp that the experience of being diagnosed and undergoing treatment is in and of itself toxic, stressful, and disturbing. These experiences alone can trigger mental health issues and concerns. 

I single out physicians, but in all reality I am not sure I would have understood the psychosocial consequences myself if I hadn't experienced them personally. Peter and I got to watch Mattie endure months of chemotherapy and surgeries, while living in-patient. We saw Mattie transformed before our eyes from a humorous, bold, and happy child, to one that had great sadness, fears, and preferred isolation. The transformation isn't only experienced in the child. It also happens with parents. 

The study highlighted that parents become hyper vigilant while their child is in treatment. We have to, as our children rely on us for their round the clock care and to be on hand to report complications of treatment. It is very hard to go from living in this heightened state of arousal to returning back to baseline when treatment is over. Parents need support post treatment. Meaning it is hard to go from living in the cancer world, back to the real world, where cancer is not a daily threat.  

I have attached a link to the article below, so you can read it for yourself. In either case, I am very happy that the reality of cancer care is being expressed in this study. As Mattie Miracle always says...... the psychosocial issues do not end when the treatment does." Thankfully medical researchers are beginning to highlight this fact.

http://www.cbc.ca/news/health/childhood-cancer-survivor-mental-health-1.4547620

Saturday, February 24, 2018

Saturday, February 24, 2018

Tonight's picture was taken on March 2005. Mattie was about three years old here. That weekend we took him to Butler's Orchard in Maryland. Every spring, this farm hosts Bunnyland, which is like a spring family festival. There are all sorts of activities for children from an Easter Egg hunt to tractor rides. As you can see Mattie was intrigued by this John Deere toy tractor! Weekends with Mattie were always physically busy, as Mattie preferred activities and fresh air. 


Quote of the day: You can't get there by bus, only by hard work and risk and by not quite knowing what you're doing. What you'll discover will be wonderful. What you'll discover will be yourself. ~ Alan Alda


This is another working weekend for Peter and me. As the Foundation newsletter for February had to be generated, the Mattie Miracle website needed to be updated, and we are also working on a grant request. In the midst of doing all of this, I am working hard at solidifying all of our vendors for the Mattie Miracle Walk on May 20th. For our returning vendors, I contact them in December and alert them to save the date in May. But each year, we try to add new activities to the Walk. Coming up with ideas is not always easy and even if I come up with an idea, we may not be able to afford it or be allowed to host it on the School's campus. 

So far, I have secured two new vendors this year. One is a professional caricaturist and the other is Reptiles Alive. In order to find reputable vendors, I use an on-line site called Gigmasters. It is thanks to Gigmasters, that I found our DJ and face painter years ago. Gigmasters generates a contract and stands behind their recommendations, which is lovely! It makes it much easier to locate service providers for events! Gigmasters is also free of a charge to the user! No one told me about this company, as I found it doing my own research. 

Last night I put a request in through Gigmasters for a caricaturist. This is not an activity we have ever had at the Walk. I read all the recommended vendors and then selected the ones that interested me. This morning I received an email from Dylan and he was moved by my request and the reason we are raising money. So much so that he is waving his fee altogether. Check out his website: http://www.dylandrawsstuff.com/

Now regarding Reptiles Alive! It is a company that provides colorful exotic live animal shows presented by fun and friendly wildlife educators. I requested that they do a show at this year's Walk! I am very familiar with them since in June of 2009, Mattie's support community invited Reptiles Alive to Mattie's 7th birthday party. His last birthday with us. This photo was taken at the party and you can see Mattie did not mind getting up close and personal with this snake!

When I wrote to the Reptiles Alive folks, I told them about Mattie and the party they participated at in 2009. The company decided to provide at the Walk a free meet and greet for participants, after the animal show. Meeting the animals is the fun part, where children and parents can interact personally with the animals under the supervision of the educator. Check out their website: http://www.reptilesalive.com/

Friday, February 23, 2018

Friday, February 23, 2018

Tonight's picture was taken in May of 2007. Mattie was five years old and Super Mattie was helping me with laundry. Not only did our cart hold laundry, but it also held Mattie. I remember for at least a year after Mattie died, doing laundry was truly disturbing to me. Because there were no more Mattie articles to clean and fold. It was very disorienting, especially since Mattie used to come with me to the laundry room in our complex. I still miss my side kick, who made laundry day extra exciting. As typically Mattie did not walk to the laundry room, but would either ride his bicycle, scooter, or you name it! Life with Mattie wasn't boring!



Quote of the day: Different roads sometimes lead to the same castle. ~  George R.R. Martin


I had an all day licensure board meeting today, we started at 10am and we did not finish until 5:30pm. Needless to say I am wiped out now, and don't really want to hear one more thought or perspective. Tonight's quote has me laughing!

At today's meeting practically every board member had a difference of opinion. None of us are right or wrong, but in order to move forward on certain decisions we need a majority vote. We discussed one topic close to 90 minutes, after which I decided we needed to move on and will pick up on this topic next month! 

I had great plans to accomplish Foundation work today when I got home. It never happened. Signing off for today. 

Thursday, February 22, 2018

Thursday, February 22, 2018

Tonight's picture was taken in February 2006. Mattie was almost four years old and as you can see was posing for a photo next to a flower pot. Peter and I won this flower pot at Mattie's preschool auction. What you may not be able to see is that the paintings on the side of the pot were thumb prints of every child in the classroom. Mattie was very happy that we won this item, as he was proud to contribute to this class project!


Quote of the day: Take care of all your memories. For you cannot relive them. ~ Bob Dylan


Last night Peter and I went out to dinner with our friends. Specifically they wanted to get together because they had friends in town they wanted us to meet. At dinner, one person asked us about Mattie and the Foundation. However, before talking about the Foundation they asked..... what was Mattie like? I have been writing this blog since 2008, for almost 10 years now! You would think I would be able to answer this question easily. 

I actually did not find this easy at all to answer and when I came home and into today I have been reflecting upon why!? Mainly bothered by why I was SO BOTHERED by this question! First to be honest, I really do not like sharing the essence of Mattie, unless I know someone is truly interested and listening. If I deem this as just a perfunctory question, then my answer will be more guarded and to the point. So that maybe part of why I was bothered. The other problem for me is trying to capture and bring Mattie to life for someone who doesn't know him is hard! Not emotionally hard but simply hard to summarize Mattie in a few easy words! 

So instead of maybe sharing adjectives to describe Mattie, which to me are meaningless, I shared some stories about Mattie that hopefully helped illustrate the boy he was. I think the best way to learn any complex subject matter is through stories. I know that was my natural teaching style as an educator! To answer last night's question, I turned to story telling. After all, stories influence our lives! We can't think about a red cape without thinking of the story of Little Red Riding Hood, or how about gingerbread? I know when I see gingerbread and think of the story of Hansel and Gretel. 

The first story I told last night happened when Mattie was about three months old. He was sitting in our living room chair, with pillows propping him up. While sitting in the chair, Mattie began to make a wheezing sound. But it wouldn't go away! I truly thought he was having trouble breathing and immediately called the pediatrician. She asked me to describe the sound and what brought it on. Nothing brought it on, it just happened. I knew he hadn't swallowed anything to explain an obstruction of air. Anyway, the doctor told me to monitor him and remained on the phone line with me. Want to know what the wheezing was? It wasn't wheezing at all, it was Mattie's attempt at laughing. The more hysterical I got with the doctor on the phone, the more he wheezed. The doctor was thoroughly intrigued by Mattie's behavior! At a very early age, we learned that Mattie was a keen observer of other people and had a REAL SENSE OF HUMOR!!

The second story I told reflected on Mattie's "engineering" abilities. I always called him my "little engineer." A title he held from age 2. At 2 years of age, Mattie freely walked to the kitchen, went into our tool drawer and pulled out different screwdrivers. He then took them over to his hotwheel cars and proceeded to disassemble the cars, but WAIT..... it didn't end there. Mattie could reassemble anything he disassembled. An amazing and unusual skill! 

Get the picture?! This is how I began to describe Mattie, by trying to paint a picture of how he lived his life, interacted with the world, and how those of us who knew him reacted to his thoughts, feelings, and antics. Stories describe Mattie in a 3-dimensional way that a list of words could never do! However, despite all my thinking about this question today, the thing that bothers me the most is I don't have a short description of Mattie to help convey the child to others who don't know him. Peter and I have platform speeches and taglines to describe the work of the Foundation, but I don't have the equivalent for describing Mattie. As I write this tonight, my conclusion to my quandary is GREAT! It is great because platform speeches and taglines are good to describe work, a mission, and agendas, but NOT human beings. So I stick to my gut instinct...... if you want to truly know Mattie and our experiences with him, you are going to need to want to invest the time to listen and converse, as I find short pat answers don't make me feel good and most importantly they do not do Mattie justice. 

Wednesday, February 21, 2018

Wednesday, February 21, 2018

Tonight's picture was taken in April of 2007. I went digging through my files last night to find this photo. I could recall it but wasn't sure what year it was taken. My mom saw the photos of cherry trees that I posted yesterday on the blog and commented that she wished she could see them. I reminded her that she not only saw our DC cherry trees but viewed them with Mattie. 



Quote of the day: Your time is your life. That is why the greatest gift you can give someone is your time. It is not enough to just say relationships are important; we must prove it by investing time in them. Words alone are worthless… Relationships take time and effort, and the best way to spell love is “T-I-M-E.” ~ Rick Warren


I very much stand behind the sentiments of tonight's quote. Words are important but giving of your time is what separates an average relationship from a meaningful one. The investment of our self sounds easier said than done. We are all very busy and running in different directions, but there are times when I do see that someone is either alone or wants to talk, so I stop. I maybe frustrated internally at first by this, but I then let it go. 

Such an issue with time happened today! As we approach Foundation Walk season, I am more guarded with my time. Sunny takes up a good chunk of my day walking, so I have to factor that into my daily schedule. This morning I headed to the dentist. Most people would metro or uber there given its distance, but I walk. It is about a two mile walk each way. After that adventure, I got home and Sunny was begging for a walk. So out I went again and walked for another 90 minutes. Sunny can move at a clip and my thinking was we were going to walk quickly and return. However, once out of our building, I could hear my neighbor calling my name. My neighbor is an adult with special needs. I have known him for over a decade as he even would visit me when Mattie was alive. My neighbor likes talking to me and spending time with me. I am not deducing this, it outright tells me!

In any case, my neighbor decided to join us for our walk. I wasn't planning on this, and walking is typically a time when I do a lot of brainstorming for the Foundation. It is my private time to be outside and not to be mentally disturbed. Other than navigating the streets of DC. My neighbor doesn't walk as fast as Sunny or me, so we had to slow down and of course have conversation. Initially I was upset by this, but as we kept going I let that feeling dissipate as clearly my neighbor was lonely and was looking for an activity.

The funny part of all of this is my neighbor isn't used to walking so far. So I feel confident we gave him some exercise and time outside in our beautiful close to 80 degree weather. Yet one thing my neighbor can acknowledge which many cognitively intact people can't, is the loss of Mattie, and how this changes one's life. My neighbor lost his mom recently, who he was very close with, and from that loss he has learned the feelings of living with a forever loss. Working with people who have special needs can be challenging, frustrating, and overwhelming, yet I have found that people with special needs are very in tune for the most part to feelings and emotions and can communicate in ways so many of us can't. So at the end of the day, I maybe still working tonight because my schedule got pushed back, but taking the TIME to be present with those in our lives has intangible rewards.