Saturday, January 10, 2015

Saturday, January 10, 2015

Tonight's picture was taken in January of 2006. Mattie was in his first year of preschool. That year I asked Margaret, his teacher, if I could do some sort of winter activity with the children in her class. She liked the idea and asked if I would bring in gingerbread houses. She requested two houses for her room and even gave me the molds to bake them in! What Margaret did not know was I had never baked a gingerbread house or assembled one in my life. But I was determined to do this for Mattie and his class! So I contacted my mother in law, who is an excellent baker and she shared her recipe on how to do this. Needless to say, the houses were such a hit along with the icing and candies, that not only did Mattie's class decorate them, but so did the whole preschool.... ALL FOUR classrooms got involved that day. Mattie got to take the finished products home and he was very proud of our creations and we both talked about them (and the experience!!!) for years!!!

Quote of the day: There are 2 ways of spreading light: to be the candle or the mirror that reflects it. ~ Edith Wharton

This morning I woke up to a racket outside Mattie's window. I always know when the bird feeders are empty because the birds come right up to our windows to let us know they are VERY UNHAPPY with us!!! So on mornings like these, I throw on my coat over my pajamas and head outside to restock the feeders. I am sure if my neighbors are watching me, I am quite entertaining to watch! I had no idea Peter was photographing this moment, nor did I know that the birds were lined up on the fence waiting for me to get it going!!! If I had to title this photo, it would be "they are watching over me!"

Once I moved away from the feeders, there are literally sparrows every where. In the ivy, the bushes, all over the feeders, and on the fence!

You can see the sparrow frenzy! Sparrows can live for decades and I am quite sure we are feeding the same ones since Mattie was a baby. We began feeding the birds when Mattie was an infant. I was spending a lot of time at home then and it gave us something to look at from our windows that was stimulating and soothing. We got in the habit of doing it every winter. These sparrows are like homing pigeons, they come back to our deck space every winter and they seem to know exactly where to come to! These are fascinating! This winter I moved their feeders from our deck to our commons area. I wasn't sure they were going to like the new location but they have taken to it like ducks to water. In fact, I think they prefer it because they like perching on the bushes we have planted in the commons space. This space, I consider our memorial area to Mattie. To it seems fitting that this is where we now feed the birds. 

To my faithful readers, you may recognize these garden hooks that the feeders now rest on. When my 85 year old friend, Mary was coming to the end of her life, I bought her these hooks and a bird feeder. I wanted her to be able to see the birds from her daughter's window. After Mary died, I brought these garden hooks to my home and put it in Mattie's memorial garden. So now Mary's spirit is remembered with Mattie. Mary was an important friend to me, she too lost a son to cancer, and we shared that bond. When Mattie died, Mary's husband was also dying. In a way, we grieved together and helped each other for years afterward, despite our huge generational differences. 

So though this looks like a photo of just birds, feeders, and bushes, this is truly a photo with a lot more significance! 

Friday, January 9, 2015

Friday, January 9, 2015

Tonight's picture was taken in January of 2003. This was Mattie's first New Year's! Peter and I will never forget Mattie's first New Year's Eve, mainly because he was UP for the ball going down over Time Square in New York! Mattie was a night owl and he had no concept for sleeping or napping! 


Quote of the day: We think too much and feel too little. More than machinery, we need humanity. More than cleverness, we need kindness and gentleness. ~ Charlie Chaplin


The highlight of my day today was an email I received from Carrie. Carrie is a board member of childhood cancer non-profit. I met Carrie years ago at Dr. Shad's home. Since that brief encounter, I have been connected with Carrie ever since. Carrie caught my attention at Dr. Shad's home NOT because she is a parent who has a child with cancer, but because she was supporting her friend whose child was battling cancer. Not only was she supporting her friend but then became the executive director of her friend's Foundation. In this position, her leadership grew the Foundation to great heights and set the Foundation on solid ground. Carrie has since moved to North Carolina, but even though she is no longer local, she still writes to me. I can only imagine what kind of friend she must have been, based on how she reaches out to me, and we only met each other once or twice. 

One of Carrie's children, Will, got to know about Mattie and his story. So much so, that each year in the organization that Carrie ran, Just TRYAN it, Will would dedicate his triathlon racing and fundraising to Mattie. He did this several years in a row. Last year, Will even made a video about this! Today, Carrie wrote to me to let me know that on January 24, Will we be having a bar mitzvah and during his speech he will be mentioning Mattie. That Mattie has made an impact on Will's life, and the irony is, Will never had a chance to meet Mattie. How do you like that? Do you think it is possible for a person to influence another's without ever meeting them? Well if it could be done, I knew Mattie could do it! 

Thursday, January 8, 2015

Thursday, January 8, 2015

Tonight's picture was taken in February of 2008. Mattie was in kindergarten and as you can see he was jumping on his bed with his friend Charlotte. I had picked both of them up after school for a play date. This was Charlotte's first visit to Mattie's home. If you notice closely, Mattie not only had his mattress on his bed, but he also had an aeromattress on top of his bed, underneath his comforter. Mattie did all sorts of funny things like that. I did not let him sleep on top of these two mattresses, but he would play around with all sorts of mattresses by day! Mattie would get into just about everything, and the possibilities were endless. The one thing I do remember about his friendship with Charlotte was he used to get her to laugh instantaneously! Charlotte's laugh was contagious. When you heard her laugh, you just wanted to laugh right along with her! They were great friends and their friendship practically formed on the first day of school.  

Quote of the day: Life isn’t about getting and having, it’s about giving and being. ~ Kevin Kruse


As time moves on, and I get further and further from Mattie's death, I find that some people I interact with my opinion and outlook about parenting and child rearing just doesn't matter to them. It simply doesn't count because in their minds I am not raising a child. I suppose technically they are correct, I am not actively raising a child now. However, there is one major problem with this notion and that is I once was a parent and I have experience of raising a child. Not just raising any child. I raised a child who had sensory issues, then raised a child who was typically developing, and then cared for a child who had cancer. I did this in seven short years. At the end of these seven short years, I also had to watch my child die. These life circumstances have taught me a great deal and while enduring Mattie's treatment, we also lived within a hospital setting for a year. 

There are times I try to share my lens with my friends, friends who are raising healthy and typically developing children. After all, I can remember living the same lives as my friends! The life of a busy mom, rushing from one activity to the next, trying to balance and juggle so many things. This was the way my life was before Mattie developed cancer. Life seemed chaotic. Then Mattie developed cancer and our world came crashing down around us. What once seemed chaotic (chores, cleaning our home, running to the grocery store, working, planning things, having a future, etc) became something we LONGED for!!! We wished for these everyday and normal concerns! Mattie's cancer and death gave us a perspective that perhaps few can obtain in this world, and thankfully so, because I would hate for everyone to gain such knowledge in such a heart wrenching and agonizing manner. Yet at times I want to share these insights with other parents so that they can live in the moment with their children and appreciate what they are lucky enough to have.... a healthy child. 

It is hard for parents who have children with cancer or parents who lost a child to cancer, to hear parents with healthy children lament about their lives. Lamenting about everyday concerns...... their schedules, plans for college, planning weddings, plans for the future, etc. For us in the cancer world, the plans revolve around chemo, worrying about survival, and managing endless loss and grief. These are the major differences between us (parents with healthy children and those who have/had children battling cancer) and yet we have to co-exist. It is challenging and in many cases it can lead to a great deal of miscommunication and hurt feelings between both parties. I do think for friendships to work between these two different parent sets, there has to be an understanding of thoughts and feelings and feelings have to be allowed. They have to be shared in order to avoid misunderstandings and frankly in order for more healing for the bereaved parent to continue to occur. 

Wednesday, January 7, 2015

Wednesday, January 7, 2015

Tonight's picture was taken in January of 2009. Mattie was home between hospital admissions and as you can see he had transformed a packing box we received in the mail. He took it, cut it, and shaped it into his version of a bicycle helmet. Mattie put tape on it and then popped it on top of his head. Sometimes Mattie just made me sit back and laugh. I never knew what he was going to do, but the possibilities were endless. As I look at this photo, I also can't help but see Mattie's broviac tubes sitting in his lap. These tubes were connected to a central vein in Mattie's chest and this was how all his medications, including his chemotherapy was infused into his body. It was a daunting notion to think that these tubes were just dangling there, and if you pulled on them by accident, Mattie could literally hemorrhage out and die. 


Quote of the day: The connections between and among women are the most feared, the most problematic, and the most potentially transforming force on the planet. ~ Adrienne Rich


Today seemed absolutely frigid. With the wind chill it was 18 degrees! Naturally it was the perfect day to go to the dentist. Typically I walk to my dentist, but given the weather conditions and that the sidewalks were icy, I wasn't walking over a mile. I decided to take the metro instead. But my luck, the metro had some sort of 30 minute back up on the tracks. I literally got in a metro car and waited in the car with the doors open for over 10 minutes. I finally couldn't take it any more because I did not want to miss my appointment and I left the station. I walked back outside and hailed a taxi! 

The last time I visited my dentist office, I learned that my long time dentist was dying from bone cancer. I am not sure what my odds are, but for me they are high. First Mattie, then Patches, and now my dentist! I am three for three. During my last visit they assigned me a new dentist. He isn't new to the practice, but he is new to me. He is actually a partner in the practice, but needless to say he and I did not hit it off. I tried to be open minded about him today thinking that perhaps my mind was just clouded by the news that I lost my long-term dentist during the first visit. However, after my cleaning today, my hygienist announced to me that she had just found out that the dentist left for the day to go to his own doctor's appointment and therefore couldn't see me. She felt that my appointment went fine and that I really did not need to be seen by a dentist. Well that was it, I was royally ticked off! Besides the fact that I am paying to see a dentist, the behavior of this new dentist confirmed my initial read of his behavior. At which point, I let my hygienist have it. I told her that I did not care for how the office let me know that my long-term dentist had cancer and would not be working with me anymore. That this was done in a cold and impersonal manner. In addition, I wanted to know how I was assigned this other dentist because I did not care for his personality or demeanor. In fact, I told her, we might have to go through every dentist in the practice until I find one I am comfortable working with. That the decision on who I work with is mine, NOT their practice's! 

Normally I advocate for others this way, and not necessarily am I so aggressive for myself. But when the dentist did not show up for my appointment today, I had it. Nor did I like being told I did not have to see a dentist. That is the whole reason I go to the office in the first place! 

Switching gears, Rich's quote caught my attention tonight. I have had the opportunity over the years to listen to women both professionally and personally and I can attest that their relationships between one another can be at times respected, feared, envied, and hated by other women. These connections can also be life altering and transformative, which is why women are intrigued and inspired to hear about solid and lasting female connections. They want to aspire to achieve such bonds, to feel a part of this greater force. If you doubt what I am saying, that is fine. I suggest you pay close attention to themes in books, movies, and the dynamics at parties and in conversations. Once you do, you will see the underlying theme. I interacted with someone today who shared with me her concern, and of course as a fellow woman it is easy to relate to her pain because once you have experienced such a loss of a special female bond, that pain remains within you.

Tuesday, January 6, 2015

Tuesday, January 6, 2015 -- Mattie died 278 weeks ago today.

Tonight's picture was taken in January of 2009. This was not an atypical photo for Mattie and me. Mattie loved to put his cheek up against mine! I remember Mattie's cheeks were so soft, it was almost like touching silk at times! As you can see, people would say we looked exactly alike, but besides looking alike we had very similar personalities. We were both emotional people, high strung, and sensitive to our surroundings and others. Two peas in a pod. Yet Mattie had Peter's curiosity, his need for movement, exploration, and inquisitiveness. So he was quite the blend of the two of us!

Quote of the day: Connecting with those you know love, like and appreciate you restores the spirit and give you energy to keep moving forward in this life. ~ Deborah Day

Today was our first snow fall in DC. This did not thrilled me at all! As Peter walked to work, he sent me several photos. However, I wanted to get out and about today, so I too went for a walk. 

When I was of driving age, I was living in Southern California. As a high school student, I learned to drive in Los Angeles. Therefore, I can safely say I have NO idea how to drive in the snow. But in DC, I am in good company, because I would say.... neither does anyone else around me!!! Which is why being on the roads isn't the safest place to be. I was thrilled to remain on foot today. This is what the quad area of the George Washington University looked like with a dusting of snow. 

Believe it or not, this was what Pennsylvania Avenue looked it. Totally not plowed. The roads and sidewalks were a mess this morning!

Outside my window was this beautiful sight!

My friend Mary Ann went for a walk today and sent me this lovely photo! Mary Ann knows I love this wild grass by her home. I have passed this grassy bush with her on a walk we did together this summer. Why do I love this grass? Because this grass is next to a bunch of rose bushes and a lake. The roses remind me of my friend Margaret who died in June. In fact, right after Margaret died, Mary Ann sent me a photo of the roses by this grassy bush. Mary Ann did this because she knew that Margaret was an avid rose collect and cultivator. I have seen this grassy bush throughout the seasons and it is very special when a friend sends me a photo during the day. It just lets me know that I am part of her journey and was thought of today. So to me this grassy photo has multiple significance!

Monday, January 5, 2015

Monday, January 5, 2015

Tonight's picture was taken in January of 2009. I can remember this photo as if it were taken yesterday. Mattie was pictured with his physical therapist, Anna. Anna ordered a special walker for Mattie. Most walkers are forward moving. However Mattie did not like those walkers. He felt very insecure with them. He preferred having something behind him in case he fell. In addition, the mechanics of moving the walker in the photo was easier for Mattie given the fact that he had three prosthetic limbs (right and left arm and right leg). With the reverse walker Mattie took a couple of steps that day in the Hospital hallway and Anna was thrilled. Unfortunately walking progress was never significant with Mattie given how ill he was, his depleted energy level, and the fact that he did not have the ability to fully participate in rehab because of his chemo regimens.


Quote of the day: Educating the mind without educating the heart, is no education at all. ~ Aristotle 

I think Aristotle's quote is brilliant! It is brilliant because to me true learning only happens when the mind and the heart are taught a lesson simultaneously.  
In fact I believe that when you allow your heart to feel something, even a concept, it helps you explore and think about the concept in a whole new light. It makes you want to find answers and solutions to it. It inspires and motivates you in ways that only thinking could never do. For the purposes of this blog, let's talk about childhood cancer. 

One could educate one's self about the biological nature of a particular form of childhood cancer. Granted one maybe inspired to learn for the sheer pleasure and interest in knowledge seeking. However, when you meet a child touched by cancer and make a personal connection and form an emotional bond with a child and family impacted by this disease, you learn about cancer NOT through a research study or article but through your HEART! This knowledge should never be discounted because it is very valuable. Learning directly from children and families is crucial! What makes it crucial is that through listening with one's heart, it helps one understand with one's mind what strategies will work with a particular patient. 

For example, in Mattie's treatment cycle certain things had to happen. He had to get scans at a particular time to assess whether his chemotherapy was working. The scans would show at the cellular level whether this tumors were shrinking, remaining the same size, or growing. In theory, one should be able to put a child on a scanning machine and take an x-ray, mri, or cat scan. However, this is where listening with the heart comes into play. Knowing something about the child's preferences, fears, and coping styles will enable someone to know how to tailor scans or any form of treatment to meet a child's needs. Without educating the heart, which some doctors feel is ancillary, guess what can happen? Some children like Mattie (out of fear!!!) will not sit still on a scanning machine and comply with a scan. If a scan isn't compiled with, it is like a domino effect. No scan, then subsequent chemo treatments are delayed (which is never good if you are fighting cancer). So balancing mind and heart is imperative in medicine, especially in pediatric medicine. 

Today I spent the day helping my friend Tina de-Christmas her house. I have done this now three years in a row. It has become a tradition in a way. Tina has Christmas trees, like everyone else, but her trees are a bit different. I call her trees, memory trees because all of her ornaments have significance. She and her family collected each ornament either on a family trip, vacation, or made them together over the years. There are stories to each of the ornaments and in a way if the trees could talk, they would be telling the story of the family living in the house they reside in. Tina's parents did memory trees with her as a child and now she is passing this tradition on to her children. Every year that I help Tina with de-Christmasing her house, we have a chance to look at her ornaments and discuss a few of them that catch my attention. Being a sentimentalist, this whole notion of a memory tree captivates me and if Mattie were alive, we would be building upon this. To some extent we had something like this going on, and I did not even realize it. I have no idea what our family Christmas tree would have evolved into over the years if Mattie were alive today. 

Tina asked me today what I liked to put on our family tree. I had to think about it. But I know what was important to me was we always had a Christmas ornament for every deceased relative in our family who was significant to us on our tree, we had antique Christmas ornaments that I had picked from antique shops over the years, ornaments Mattie hand created, bird ornaments (which was something reminiscent of my grandmother), and I honestly can't recall the rest. We haven't put up a tree since 2008, so six years is a long time, and I am not sure whether I miss having one up or not. All I know is Christmas is not the same for us without Mattie. 

Sunday, January 4, 2015

Sunday, January 4, 2015

Tonight's picture was taken in January of 2009. We took Mattie to New York City for a second time. This time was to begin an experimental immunotherapy treatment at Memorial Sloan Kettering for metastatic osteosarcoma. In all reality we were quite anxious and scared because we did not know what was in store for us with the experimental treatment.... specifically how Mattie's body was going to react to the drug. So before Mattie's first infusion we took him on a special ferry boat ride! Someone on the ferry observed us and offered to take our photo! I am so happy now to have this picture. The kindness of a stranger.

Quote of the day: To handle yourself, use your head; to handle others, use your heart. ~ Eleanor Roosevelt


Today was our first full day back at home. Peter and I are adjusting to being back on solid ground. I still feel like I am a cork in the ocean and am bobbing up and down. Given that I do not do well with motion in general, even back on land, I continue to take Dramamine. Any one who has ever come off of a cruise, and has issues with motion, knows exactly what I am talking about..... you just need Dramamine for days after you are home. 

We accomplished a lot today from a chore stand point and of course it was an adjustment to see gray skies. Though thankfully it was unseasonably warm in DC. Yesterday was not only a long travel day but the airport was filled with families. Parents traveling with small children! They seemed to be everywhere. We got to the airport early and waited there for hours until our plane boarded. I had to absorb many sights that passed me by during that time. Sights that were impossible to ignore. Moms with their children! 

There was one mom in particular who was pushing a stroller with a toddler boy in tow. At one point the toddler turned around to look up at her, and she smiled at him and it was the expression on both of their faces that captured me! It caught my attention because it reminded me of a split second of an exchange between Mattie and me. That was all I needed to see, I went from composed to crying in seconds. With big tears coming down my face. I was unable to speak to tell Peter what I was feeling. I was simply overwhelmed by what I had seen and once again the notion of my reality set in. It doesn't matter that I have lived with my reality for five years now, somehow the loss of a child is not something one ever truly wraps their head around and fully accepts. That feeling remained with me the entire day and onto the flight, and then to add insult to injury on our flight home, we sat next to a mom with two SCREAMING children. I never saw two children who literally screamed their way home, for TWO HOURS straight. So much so that the flight attendants offered to help! That was a new one for me. I know my fellow passengers wanted to lose it and probably thought terribly of this mom and these children! It would have been easy to do. I tried to have some compassion for both the mom and the children. I think these children needed access to things like toys and books to keep them stimulated but from my observation these children were throwing more than just a tantrum. They really did not like being confined to tight spaces nor being strapped down into a seat. I saw aspects of this with Mattie with his sensory issues, but of course I couldn't verbalize these observations to these children's mom. We did not know each other from Adam but nonetheless, I was concerned for her children because as we were landing her children were literally crawling in the aisle because they wouldn't sit in her lap or in their seats! Needless to say ALL OF US around this family were besides ourselves between the screaming and the behaviors we saw throughout the flight.