Saturday, August 25, 2018

Saturday, August 25, 2018

Tonight's picture was taken on August 13, 2008. By this point, Mattie was a few weeks into treatment. That day, we received a visit from Scooby Doo. Mattie was thrilled as he was an enormous Scooby Doo fan. We had no idea we were going to get this surprise visit, but it perked Mattie up. Do you see the two Scooby Doo stuffed animals on the bed? Ironically years later (after Mattie died), we were introduced to the dad of the young man dressed as Scooby Doo. Apparently seeing this photo really touched this family and they wanted us to know. 


Quote of the day: Sometimes even to live is an act of courage. ~ Seneca


Seneca's quote is quite poignant, especially when we are talking about the death of a child to cancer. Trying to move forward after a child dies is an absolute feat. In addition to this devastation is the sheer fact that people think you will return to normal. Especially after surviving the first year of grief. Unfortunately this is NOT the case, and I would have to say that with each successive year since the death the reality of the loss sets in further. All of which has consequences on one physically and emotionally. 

Yesterday I bumped into neighbors of mine whose mom died three years ago. This coming week is the third anniversary of her death. They mentioned to Peter and me that they were going out of town for the anniversary. I am sure to the average person, one is saying..... why? However, no explanation was needed for us, as we completely got it. 

Why do people leave or disengage from their lives on anniversaries? We do, NOT for ourselves, but because the world around us can't handle the reality that the death of a close family member is still painful. In fact, the world keeps revolving and carrying on, during these anniversary dates, and such busyness can be absolutely unsettling and surreal. So much so that a host of emotions can spring up from such insensitivity..... specifically sadness and anger come to mind. 

While talking to Peter last night, he mentioned how helpful it was in the beginning when we spoke and told our story at conferences and professional meetings. Back then, people WANTED to hear our story. I would have to say the MOST therapeutic thing a grieving parent can receive is a listening ear. Someone who understands that we have to tell our story over and over. I think by telling it and hearing it out loud, it engages us to come to terms with our reality. Otherwise, it just seems impossible to think that a once healthy child, could go through cancer treatment and then die. It makes no sense and frankly I am not sure it will ever make sense. But I appreciated Peter putting this into words and expressing the value of telling our story. 

However, as Peter was reflecting on the numerous conferences we presented at in 2008 and 2009, it made me pause. I paused because I said to him.... 'NO one wants to hear our story now.' Sure we continue to present on the work of the Foundation, but even the professional community is under some sort of delusion that we are all better now. That we have moved on and are stronger. Though it is important for first year grieving parents to tell their story, I would say that grieving parents throughout the continuum of grief need to be heard. I imagine professionals do not highlight people like Peter and me at their conferences because the truths that we would speak are overwhelming. Meaning the reality would be too scary to hear for parents who are new to grief, and certainly daunting for any professional to hear.  Daunting because providing support to a bereaved parent is not a short term endeavor. It can't be, because of the nature of the loss is not natural and unfortunately never goes away. Instead you carry it with you everyday and old wounds always get reopened at holidays, when the school year starts and ends, graduations, life events like religious ceremonies, college, vacations, marriage, and the list goes on.  

Friday, August 24, 2018

Friday, August 24, 2018


Tonight's picture was taken in August of 2009. Mattie was at the Lego Store at our local mall. However, he was there after hours when he and his friend were the ONLY ones in the store. Linda (Mattie's child life specialist) arranged for this special surprise. That evening Mattie got to work with two Lego master builders. Together they designed this NYC taxi from scratch. This was NOT created from a kit. Mattie was very proud of this creation, which still sits in our living room today. 




Quote of the day: Hope never abandons you, you abandon it. ~ George Weinberg

I was walking Sunny today alongside the Potomac River. Specifically we were on a sidewalk, which is shared by pedestrians, bicycles, skaters, and scooters (see the sidewalk lined with trees, and the busy road right next to us). Coming toward us were several bicyclists. Sunny and I moved over for most of them, but further away I could see two more men approaching us. 

These two men were not riding side by side, but instead one in front of the other. What I observed is that one of the men literally went from riding his bicycle, to falling off his bicycle within seconds (hitting his head and unable to move). Upon reflection, I honestly do not understand why he fell off his bicycle as no one hit him nor were there any bumps or holes on that portion of the sidewalk. So now I am thinking he had a medical issue that caused him to fall. 

In any case, many bystanders approached the fallen cyclist, which triggered his companion in front of him to stop and look back to observe what was going on. What caught my attention was the number of people who stopped to offer help. Not just walkers, joggers, and other cyclists, but people within their cars. Rock Creek Parkway is a major thoroughfare in DC, and cars go zipping by on this road. But two cars stopped (blocked traffic), put their hazard lights on, and jumped out to help. One called 911 and literally both car drivers stayed with this fallen cyclists until an ambulance arrived. Meanwhile, once 911 was called, I walked across the parkway and noticed a woman staring at the commotion. So  I told her what happened, as she clearly wasn't sure what was going on. 

It turned out that this woman was a medical doctor. She asked me whether her services would be necessary or needed across the street. I said 'definitely.' She literally ran across the street to help, which I think was vital given the fact that this man was moaning in pain, but unable to move. Mind you he hit his head too. 

I think what this freak accident did for me today, was it helped to restore my hope for humanity. In so many ways, I feel like I live in a city filled with people who could care less about one another, who only look out for themselves, and are absorbed with rushing around and getting from point A to point B in the fastest way possible. Regardless of who is plowed over to accomplish this goal. 

Needless to say my thoughts go out to this man, whose life was clearly transformed after this accident. Yet even now, I still can't get over the incredible show of support this man received and I know if he is making a recovery tonight it is thanks to the handful of people who responded immediately to help. People like this are the heroes in our society. 

Thursday, August 23, 2018

Thursday, August 23, 2018

Tonight's picture was taken in August of 2009. I typically did not post the photographic reality of childhood cancer on the blog during Mattie's journey. I did not because I knew friends of all ages were reading the blog and personally I think photos are sometimes way too graphic. Nonetheless, this was the reality of what Peter and I saw on a daily basis. A child who was once full of life, energetic, and vibrant, get transformed before our eyes into one who was deeply depressed, anxious, and truly disengaged from people and the world around him. 




Quote of the day: While there’s life, there’s hope. ~ Cicero


I met a friend of mine today who is managing her own cancer diagnosis. We spent several hours together and I have to admit it is hard not to look at her situation through my own cancer lens. As I understand her concerns, fears, and feelings in a very profound well. 

There are so many aspects of a cancer diagnosis that challenge a relationship and a whole family. Starting with the uncertain nature of the disease's treatment. What do I mean? Assuming one gets diagnosed in a timely way, then a patient is given a treatment plan. The plan typically follows a protocol, which is like a road map. You will know the sequence of medications, testing, and surgery, by the week/month. However, it's so important to remember that a treatment plan isn't written in stone. Just like when driving, we occasionally run into traffic and detours and have to re-route, well a cancer treatment plan is the same way. We can run into multiple detours, namely.... low blood counts, contracting illnesses from lack of immunity, and scan results which may indicate that the current medication isn't working. 

There is nothing consistent and predictable to cancer or its treatment, which is what makes it so unsettling to practically all patients and families. Because things are forever changing and the treatment schedule gets altered constantly, it is hard to plan anything outside of treatment. Which in a way can leave you feeling held hostage to cancer. 

I love all those motivational cancer quotes. You know the ones. The ones that say cancer can't destroy_________________ (and you fill in the blank). Cute sentiment, but in my opinion very pollyannish. Because without great inner strength and outside emotional support, cancer can easily destroy every aspect of the patient and the family. 

Most of us are future oriented. We plan our weeks, months, and years. With cancer you can try to make plans, but the disease ALWAYS wins and plans fall apart and typically get cancelled. I believe that the way one copes with cancer so that it doesn't destroy you, is you evolve with it on a daily basis. You learn to live in the moment and to take each day that is presented with you. You have to do this really because no two days are ever the same. I think trying to plan months ahead of time doesn't work but instead back fires on you as it can make you feel stressed out and guilty that you are not living up to those plans. 

For the longest time, I really blamed Mattie's care providers for the fact that Mattie never got to have a wish granted from a national non-profit which funds all sorts of special events, trips, and gifts to children in cancer treatment. I remember Mattie's providers telling me that Mattie would have time to make a wish when he reached remission! So I waited, despite the fact that Mattie had multiple ideas for a wish request. When Mattie died, I was angry. In fact for quite some time I felt that social workers shouldn't take it upon themselves to advise parents about when to make a wish, but instead to leave it up to the family. With time, I wonder about my feelings of anger.

I think anything we would have planned for Mattie would have been cancelled anyway because he was that sick. In fact, I know that if a wish was granted and we couldn't take Mattie on it, I would have reflected on that too. Meaning that whether I made the wish or didn't make the wish for Mattie, I land up in exactly the same place. Feeling regret. Perhaps my ramblings aren't making sense to you tonight. What does make sense though is knowing that cancer's timetable is endless. It is ten years after Mattie was diagnosed and the havoc of the disease continues to swirl around in my mind. Yet I think it is because I constantly confront this havoc that I am able to hear and assist other families coping with cancer. 

Wednesday, August 22, 2018

Wednesday, August 22, 2018

Tonight's picture was taken in April of 2009. I actually took a screen shot of a video. Mattie was in the hospital for his seventh birthday and his school counselor gave him this singing card. Mattie absolutely LOVED it. I can't tell you how many times I heard this card being opened and shut. I guess so many, that I decided to take a short video of Mattie. You can see it by clicking on this link: https://www.youtube.com/watch?v=cFq05QDc2IM



Quote of the day: There is no greater power and support you can give someone than to look them in the eye, and with sincerity/conviction say, 'I believe in you.' ~ Ken Poirot


I had an interesting interaction with someone I know today. I am not sure how we got onto this subject, but we talked about dreams. I have known this person for many years, and never knew about this aspect of her. She was telling me how she always knows when a family member is ill. She knows this because she has a dream about it first. In other words her dreams are like premonitions. In addition to this, she explained that family members who have died vividly come back to her in her dreams. Usually communicating a message for the rest of the family. She admitted to not telling others about these dreams because she said the average person would think she was nuts. 

I on the other hand do not discount someone's beliefs, especially when it involves connecting with a deceased loved on. Do I believe in mediums and people who talk to spirits? I am not sure! I wouldn't seek such a person out, but I am at least open to the possibility that some people are sensitive and have unexpected abilities. 

When Mattie died, I had one or two people ask me if I thought about seeing a medium to connect with Mattie. Certainly I know others have chose to go this route. It wouldn't be in my nature however to use a medium, for various reasons. But top on my list is my own connection with Mattie. If anyone is going to connect with Mattie, it will be me. I do not need an outside entity to help me with this. That is a personal decision. But I understood what this woman was saying to me today. She wants to connect with her deceased loved one because she is worried that he isn't doing well. I do admit that this is a fear so many of us have, especially with child loss. The angst is.... who is watching over our child now? After all that was our job. 

This conversation today (which I admit is NOT an average topic people address with one another), once again reminds me that people view me as safe. I believe this has NOTHING to do with my professional training, but MORE to do with the fact that Mattie died. Once Mattie died, I noticed that people felt very comfortable talking to me about grief and loss, and they seem to know that I am not going to judge them on how they are managing or coping. 

Today was my first day back home, and one consistent thing is Sunny. Sunny loves looking for squirrels. He chased one right into a magnolia tree and then sat down and wouldn't move. 

Peter calls Sunny my "lover boy." I truly think Sunny can smile! 

Tuesday, August 21, 2018

Tuesday, August 21, 2018 -- Mattie died 466 weeks ago today.

Tonight's picture was taken on August 19, 2009. As you can see Mattie was wearing oxygen cannulas by that point. Despite how depleted and in pain he was, he mustered the energy to ride around on Speedy Red. Speedy Red brought some joy to Mattie's last few weeks of life. Which may explain why I was never able to part with Speedy Red. Speedy basically rusted out on our deck, as I did not have the heart to move the vehicle or give it away. 







Quote of the day: I wondered why somebody didn’t do something.  Then I realized, I am somebody. ~ Unknown

I am now back in Washington, DC. It was a VERY long day of travel. This was my view from the plane during take off from Los Angeles. For just a period of time, I was over the Pacific Ocean today. 

But it was a challenging commute home, which started with a 90 minute car trip to the Los Angeles airport (which is ONLY 27 miles from my parent's home). LA has a VERY big traffic problem and the ramp to get into the airport was backed up for miles. Literally I was in a stand still. This is one airport that you can't play around with timing. You absolutely need to allot about four hours to commute to the airport and get through security! 

It was close to a five hour flight today and the first two hours were filled with turbulence. Thankfully I did not know about the terrible storms in DC. About an hour before we were scheduled to land the pilot informed us that National airport had been closed to air traffic because of rain and wind storms. He did not say much more than that, other than we were going to be in a holding pattern. However, I overheard the flight attendants talking about the possibility of re-routing our flight to another city. Thankfully, the storms stopped and they began to reopen the runways. But the back up of planes was significant. So much so, that there weren't enough crew members on the ground to help get planes to their gates and luggage to the terminal. So there was a lot of waiting around! Some passengers were not happy, but I was thrilled not to be in the air. Fortunately I can say that we had one smooth landing, and I was prepared for the worst given the storms that were reported to us!

Meanwhile, someone is thrilled that I am home! Sunny is lying down right behind me as I type this blog entry!

Monday, August 20, 2018

Monday, August 20, 2018

Tonight's picture was taken on August 20, 2009. Mattie was coming to the end of his cancer journey and by that point was absolutely miserable. He truly did not like noise of any kind and especially disliked people talking around him. Which is why you see him covering his ears with cups while in clinic. He and I were sitting at the clinic's art table, and around the table patients, families, and health providers talk. Mattie wanted to create art, but really wanted to do it in silence. So it became a real balancing act for me while Mattie was in treatment, because clearly we had to interface with others and yet my goal was to keep Mattie calm and comfortable. 

Quote of the day: As we work to create light for others, we naturally light our own way. ~ Mary Anne Radmacher

Tomorrow I return home to Washington, DC. I left DC and it was grey and I am sure I will be returning to more grayness. Yet while in Los Angeles for the last two weeks, I rose every day to sunshine. I am quite certain people do not realize how lucky they are to live in a place that has beautiful weather. 

When I stepped outside the front door today, look at my greeting committee!

There are many lizards that live on my parent's property. Up in these hills you see it all..... from deer to coyote. You just never know what you are going to see. 

However, I know Mattie would have LOVED this morning's sighting. Mattie was into reptiles, so much so, that in my car and in Peter's car, Mattie placed a toy lizard. Those lizards were permanent fixtures in our cars. However, after Mattie died, both lizards (a green one and an orange) were placed on the dashboard of my car. They ride with me always. 

As I return home tomorrow, I leave confident in knowing that my parent's move was made successfully and that they are fully up and operational. 

Sunday, August 19, 2018

Sunday, August 19, 2018

Tonight's picture was taken on August 9, 2009. It was four days after we learned of Mattie's terminal diagnosis. Unfortunately Mattie never had the opportunity to submit a wish to the Make a Wish Foundation. Mainly because he never had a moment in his journey where he would be stable enough to participate in an activity. Given that Mattie was dying, his child life specialist, Linda, planned for a special outing. When our shopping mall closed for the evening, the Lego store remained open for Mattie and one friend. Mattie and his friend had the opportunity to work with master Lego builders (one is pictured in this photo) and he was given the chance to build any of the Lego kits in the store. To their surprise, Mattie had already built everything sold in the store, as we purchased countless kits to keep Mattie busy at home and in the hospital. Therefore, Mattie chose to build a NYC taxi cab. Not from a kit, but following his own plan. To this day, this taxi sits in our living room. 



Quote of the day: It’s good to be blessed. It’s better to be a blessing. ~ Unknown

Yesterday evening look who came out to visit. They were literally walking across my parent's street. I love these cappuccino colored deer. 

Meanwhile, as I was driving home last night, I thought I saw something in the road. At first I figured it was a cat or dog. As I got closer, I saw it was a coyote. Clearly I know I am NOT in DC!

This morning, as soon as I got up, I headed outside to do more planting. It is like an oven here when the sun is beating on you, so my goal was to garden when it was earlier in the day. It worked out better and I was able to plant several bushes without feeling overwhelmed from heat. 

This lovely sego palm was getting lost in the backyard. So we moved it to the front of the house. It is such a regal looking tree, I just love its shape. In addition, I moved the terracotta pot from the ground to on top of the wall and planted a rose bush in it. You should have seen the horrible cactus the previous owner had in this pot. It looked more like an octopus than a plant.  

Over the course of the two weeks I was here, I also potted roses in the backyard. They have taken and are growing beautifully. 

I also hung every canvas and framed photo in my parent's house while I was here. That sounds easier than you think. Can you see the green colored canvas on the right? That painting was a Mattie creation. He created it when he was in kindergarten. 

Pictures in the dining room. 

The front hallway! This particular framed piece of art weighed a ton. It may have been the worst out of all of them. I hung about 35 pieces in total. 

The living room. I remember sitting for this painting of myself when I was a child. My mom's friend was an artist, and I recall visiting her home weekly to sit for this portrait. I am not sure who found this more labor intensive, me or the artist. 

Another angle of the front hallway. 

 Part of the family room. 

Part of the kitchen. I remember purchasing this piece of art for my parent's anniversary two years ago. My friend Annie is an artist and in support of her new venture to open an art gallery, I bought one of her creations. 

More art in the family room. 

Birds in the hallway. I have only shared some rooms with you on the blog, but overall it is amazing what I have accomplished since the end of June. In about two months, I can say that I helped to successfully move and set up my parent's home. 

This afternoon, we went to visit friends of my parents. Friends who happen to be significant Mattie Miracle contributors. They surprised us with homemade cupcakes. Our friends own an in-home bakery and it is incredible the masterpieces they create! I think it is so meaningful when friends hand make something for me. I truly appreciate the thought and effort. All of which make me feel special.