Saturday, January 13, 2018

Saturday, January 13, 2018

Tonight's picture was taken in January of 2005. Mattie was two and a half years old and by this point LOVED bath time. So much so, that he wanted to take a bath every day! We never fought about going to take a bath, mainly because Mattie loved playing with this toys in the tub. It wasn't as if Mattie had specific bath toys. Instead, he preferred taking his every day toys and tossing them in the tub and creating elaborate play schemes. The challenge was getting Mattie out of the tub, which typically never happened until he was water logged!!!

Quote of the day: We bereaved are not alone. We belong to the largest company in all the world––the company of those who have known suffering. ~ Helen Keller

Yesterday was 67 and today was 32 degrees. Talk about constant shocks to the system! This afternoon, we took Sunny to Roosevelt Island. As soon as we crossed the bridge onto the Island, we saw people stopping by a tree and looking up. So naturally we looked up and here is what we saw. Do you see this very large bird?!

A close up! This was a lovely pileated woodpecker. I just love the red plumage on his head. 












Naturally through this blog, I have spent a great deal of time retelling and reliving aspects of Mattie's life. Both when Mattie was well and when he had cancer. I have been doing this religiously each day for 9 years! Why? Well I have learned first hand that the only way to survive a traumatic loss is to constantly retell the story. In so many ways, the blog is my therapeutic counselor and therapy. But it isn't only a Vicki thing! I have worked with many other individuals who are grieving the loss of a child or someone significantly close to them and the unifying theme is we all need to retell our stories! To the average listener, one would say..... 'are you kidding?' 'I have heard this numerous times before.' 'Aren't you over this?' 

In fact, I would say that the average person really can't help another person cope and manage through grief. Because it is labor intensive and it requires patience, understanding, and compassion. Which is why so many people turn to professional help. Because a therapist has to listen to you! It is a sad commentary, but it is the reality of grief. Others in our lives want to snap their fingers, click their heels together and puff..... make us all better!!! Unfortunately it doesn't work like this. 

I have to admit I did not have understand the importance of retelling stories until I lost Mattie to cancer. Ironically, there is a therapeutic technique called Restorative Retelling, that in essence captures exactly what I am talking about, just with the help of a therapist or support group. The whole notion of Restorative Retelling implicates two counter intuitive approaches. One would think that the only way to get past the loss of a loved one would be to “move on,” to pretend the person never existed, to block the memory of the person entirely from one’s mind and conversation. However, Restorative Retelling encourages precisely an opposite approach, which enables a person to relieve separation distress by promoting the establishment of a positive continuing bond. For me, my positive continuing bond is through this blog! I believe for each person, the mechanism maybe different.  

While investigating "retelling," I came across Robert Neimeyer's book entitled, Techniques of Grief Therapy: Creative Practices for Counseling the Bereaved. I loved this excerpt from his book:

The use of retelling or revisting, whether spoken or written in a private journal, has received great attention for its support in grief therapy. It is said one can achieve greater clarity and coherence in the account, and are able to accredit their own courage in facing down an anguishing experience. While not erasing the pain, narration of the loss in all of its cruelly objective and deeply emotional detail allows one to begin to glimpse more affirming meanings and possibilities in the wake of the horror, seeing how they responded lovingly to the deceased, or imagining more clearly how they would have, had they been given the chance. 

Meanwhile Dr. Steven Hyman, neuropsychiatrist and a former head of the National Institutes of Mental Health, had this to say in 2011:

The traumatized person should share what he wants with people he knows well: close friends, relatives, familiar clergy. It’s so commonsensical. But the power of our social networks—they are what help people create a sense of meaning and safety in their lives.

So what's the point? The point is, the next time you hear a family member or friend recount the story of a deceased loved on, don't roll your eyes or think to yourself.... I have heard this before. Instead, realize that you are actually serving a crucial role in this person's healing and more importantly helping him/her find a way to exist in the world while keeping the memory of his/her loved one alive and intact. I think if we did more listening to those in our lives, especially as it related to grief, there would be less of a need for professional counseling. 

Friday, January 12, 2018

Friday, January 12, 2018

Tonight's picture was taken in January of 2009. Mattie was home between treatments and Caroline came over to teach Mattie how to play the piano. Caroline was a teacher at Mattie's school, but never interacted with us pre-cancer. However, once she heard about Mattie's cancer diagnosis she contacted me and asked if she could visit. At the visit she learned that Mattie wanted to learn to play the piano, and she agreed to teach him (keep in mind that she was not a music teacher at school). Now the story about the keyboard......Mattie received this keyboard from two wonderful volunteers at the hospital. They knew how much Mattie loved music and enjoyed their visits, that they literally gave him this keyboard. So there were times Caroline taught Mattie on the keyboard and other times on our piano. I think it is interesting to also note that we have an upright piano! How did we get it? Well a neighbor of ours was moving out and she liked Mattie. She felt that he should have her piano and learn how to play (which happened pre-cancer). Mattie had a way of inspiring others to give gifts, gifts which were totally unsolicited by Mattie.


Quote of the day: If you seek creative ideas go walking. Angels whisper to a man when he goes for a walk. ~ Raymond I. Myers

It's January and just last week it was in single digits, but today was 67 degrees. Honestly it makes no sense! Despite the warmth, it was raining and gray all day. 

By mid-afternoon, I took Sunny for a walk by the Potomac River. How do you like this sight? Literally there was a flock of geese walking across the Potomac River from one side to the other. Rarely do I see the Potomac totally frozen, but it has been that cold. 

It was a very dramatic walk. I can't tell you how many people were down by the River snapping photos. I think they were intrigued by the fog. I have never seen so many people interested in taking photos. Actually I would say there was more interest to take photos of the fog than on a beautiful sunny day. 

The sky was filled with clouds, combined with ice on the River and fog, it made for a very ethereal photo. 

This evening, our neighbors who have dogs all met up in our commons area. Typically this happens only in the spring. It is amazing what warm weather will do to people and dogs. I do think it inspires community and conversation, which is a rarity in the city. 

Thursday, January 11, 2018

Thursday, January 11, 2018

Tonight's picture was taken in January of 2009. Mattie was in NYC, staying in a hotel room. We were there to start experimental treatment at Memorial Sloan Kettering. All the items you see sitting in front of Mattie were sent to him by Linda, his child life specialist. She literally mailed items she thought Mattie would enjoy while away. Honestly this welcome to NY present was beyond touching. Notice Mattie's left arm that was up in this picture. Mattie wasn't holding his arm this way, it just literally wouldn't go down. It looked like a broken chicken wing. Don't ask me how Mattie's prosthesis twisted and turned around in his body, but it did. His arm was like this for the entire time we were in NY, and wasn't corrected into we got back to DC. 



Quote of the day: I was brought up to respect my elders, so now I don't have to respect anybody. ~ George Burns

Well the headaches continue, and yet so do I. I am not sure how I function, but I chalk it up to years of practice of living with chronic pain. 

I planned a small birthday lunch for my friend Jane today. I have known Jane since 2005, as Mattie and Jane's daughter were in preschool together. Jane continues to be heavily involved in Mattie Miracle and two years ago started to serve as our Walk Team coordinator. I really appreciate her support because April and May are very stressful months for me. I set a financial goal which needs to be met at our Annual Awareness Walk and there are three women who share this stress with me. Or at least are working tirelessly to make this goal a reality and that is Jane, Peggy and Ann. 

Pictured in this photo from left to right are Catherine (her daughter went to preschool with Mattie), Ann, Jane, Vicki and Peggy. 

In a way, myself, Jane, Peggy, and Ann refer to ourselves as the "Nags." Why? Because we are always nagging people for money. Well not outright nagging but you get the picture. In any case, we have formed the Nags Club and I have given each nag member a little silver horse charm as a reminder of their important role with Mattie Miracle. In any case, I believe it is important to celebrate birthdays and to acknowledge those who are so good to Mattie Miracle. 

Wednesday, January 10, 2018

Wednesday, January 10, 2018

Tonight's picture was taken in January of 2009. Mattie was in NYC, starting an experimental treatment at Memorial Sloan Kettering. Everything about Memorial was difficult. The majority of infusions and procedures are done on an outpatient basis for children. Their playroom looked more like a warehouse than a room conducive to engage children with life threatening issues. In any case, Mattie's first infusion of this immunotherapy drug was admitted in a hallway. You got that right, I said a hallway. With lots of others walking passed us, exposed to every germ possible. I was stunned, but that is business as usual for Memorial. Soon after the infusion, Mattie started to feel ill. So we literally were placed in this two by four of a cubicle that you see in the photo. However, shortly there after we were sent back to the hotel, to have a wild ride of a night. A night, in which we had to come back to Memorial's ER to get something to counter act  the terrible reaction Mattie had the drug. NYC does not bring back positive memories for us, nor does the hospital. 


Quote of the day: When people talk, listen completely. Most people never listen. ~ Ernest Hemingway


I think Ernest Hemingway was exactly right! People do a lot of talking, and talking at one another. Yet the key component being missed is listening. For the past several weeks, I have been communicating with a friend of mine who lives out of state. She and I have known one another for years. Despite geographical distance separating us, we try to stay connected. Thankfully electronic means make that much easier now. 

Since this is her story and not mine. I am not going into details about what we are talking about. Other than she has a concern about her daughter. Though the concern is very different from childhood cancer, I can absolutely understand how she is feeling and the level of frustration and helplessness she is facing. There are many things that we as parents can't control in life. We want to make things go as smoothly as possible for our children... to do well in school, to have friends, to be invited to activities, and to contribute positively to the community. Yet some things like illness are out of our control. Yet when going through a health crisis, you can literally see your friends and family do one of two things..... come closer together or run the other way. After all, it isn't easy to understand something different like cancer or any other illness for that matter. Sometimes it is easier not to listen and create distance. 

This not listening doesn't just apply to friends and family. It can also apply to the professionals you are seeking help from. Many times doctors are busy managing too large of a case load, have competing priorities, and frankly some of them have forgotten why they entered the helping profession to begin with. So what do you do with these unhelpful professionals? It's a quandary that can leave parents feeling like they are drowning in quick sand. I guess what intrigues me is how is it that through electronic means I can understand what my friend and her daughter are dealing with, and yet the people who interface with them are oblivious to the seriousness of the matter?! Really I have NO ANSWERS! 

One of my strongest skills is assessing a situation of a health care nature and then matching up the community resources to help. Though my friend did not ask for help, I inserted myself from afar. My friend keeps telling me I get it. I get it because I raised Mattie. I always say he was my best teacher, but it is true. I knew at an early age that Mattie needed speech and occupational therapy intervention. It is hard to admit that as a parent I could not manage the issues on my own, but once I had the resources and learned skills to work with Mattie, I saw him turning a corner. So much so that by the time he entered kindergarten, no one would have ever known he had sensory integration issues. We managed that hurdle, but that was nothing in comparison to childhood cancer. That was the ultimate test that did not end positively. The skills, insights, and understanding I developed during those 14 months are hard to describe. Yet I would like to think that from Mattie's cancer journey, I am able to now help others in ways that wouldn't be possible without first hand exposure. 

Tuesday, January 9, 2018

Tuesday, January 9, 2018 -- Mattie died 434 weeks ago today.

Tonight's picture was taken in January of 2009. Mattie was home between treatments and as you can see he had a visit from JJ, our resident Jack Russell Terrier. JJ and Mattie practically grew up together. JJ inspired Mattie to want to have a dog of his own. When Mattie died, JJ claimed an old sandal of Mattie's and apparently slept with it for a year. Interesting no? I would say there was a special connection there. 


Quote of the day: Depression affects almost 80% of migraine sufferers at one time or another. People with migraine, especially chronic migraine, also are more likely to experience intense anxiety and to have suicidal tendencies. If we want to live happy and joyful lives with migraine, it is vital that we acknowledge and deal with the emotional realities of the disease. ~ Sarah Hackley


As some of my loyal readers know, I had a cluster headache for about a month before Christmas. I thought I was going to lose my mind. Then it went away! But yesterday a migraine began and it has continued into today. It is my hope it is a migraine and not a cluster headache and it goes away soon. I could explain how debilitating this is, but frankly when I tell people I have a headache, they think..... sure I know what that feels like, just take a couple of Tylenol. Which is why I usually don't talk about my headaches to people, because the pain is hard to describe and is unimaginable. When you feel like this, it is hard to be upbeat about anything, to really commit to anything, and worse as I am now moving full swing in Foundation Walk plans, I wonder.... do I really have the energy for this? I have no answers, but lots of questions.  

Prior to Mattie's birth, I may have gotten the occasional headache. But on the day I went into labor, I suffered my first migraine. So since April 4, 2002, I have not known a single day without some kind of headache. Sounds incredible no? But it is my reality. I am now onto neurologist number 4. The others couldn't do anything for me. Not that the current one can either, but at least he is honest about the limited medical state of affairs for people like me. Basically there is no known drug to prevent or stop my chronic daily migraines and cluster headaches. Which is unfortunate, because when you are dealing with this level of pain, you do wish there was something to turn to. Any case, I am signing off because staring at a computer screen isn't the best for me. May tomorrow be a better day. 

Monday, January 8, 2018

Monday, January 8, 2018

Tonight's picture was taken in January of 2009. Mattie's hospital, more specifically his art therapist, secured us amazing seats at the Lion King in NYC. They gave us six seats, so we invited my lifetime friend (Karen), one of Mattie's babysitters (Emily), and her fiance (Adam). It wasn't only an experience seeing the production but then we were invited back stage and got to meet some of the cast. Karen snapped a photo with us with Nala (the female lion). Mattie of course couldn't walk because of his limb salvaging surgeries, nonetheless, Peter carried him the entire way so he got to experience being on Broadway. Literally we were standing on the stage of the Minskoff Theatre!


Quote of the day: The past is never where you think you left it. ~ Katherine Anne Porter


Over the course of the past two days, I was contacted by a professor who served on my dissertation committee at the George Washington University. He invited me to serve on the committee for a dissertation defense of one of his students. The defense of a dissertation comes at the end of a long and arduous process, which may have unfolded over a number of years. The dissertation defense is a significant milestone signaling closure on a graduate student's career. Literally at the defense the student verbally presents a short overview of his/her work, then the committee has an opportunity to question the student in two rounds of questions. The student isn't only being evaluated on the research but also how well the research is defended. Last year, I had the opportunity to serve on my first dissertation committee defense. It was a positive experience and it is nice to be invited back to my alma mater. The reason I was invited last year was because of the content of the dissertation, it was about the impact of childhood cancer on parental relationships. Clearly in my strike zone. I even helped this student connect with an NIH researcher in order to obtain her data. 

Before agreeing to serve on this year's committee, I wanted to know more about the topic. So I read over the dissertation proposal. I won't get into specifics here, but the topic relates to aging. A topic I know quite well from my own dissertation and research interests. Yet what struck me about last year's defense and this year's defense is both students used data sets obtained by someone else. Meaning another researcher conducted a large study and now the students gained access to this data to run secondary analyses. Why does this bother me?

It bothers me because this is very personal issue. As tonight's quote points out.... the past is NEVER where you think it is. So true. When you use a data set obtained by another researcher/institution, this cuts down on the time you need to conduct your research to obtain a Ph.D.. After all, you do not have to worry about where your research subjects will be coming from, the ethics involved around data collection, or going through your institution's review board to get your methodology approved. For my specific study it literally took me three years just to find the right agency who would give me access to their employees to collect data!!! THREE years! These other two students basically got their Ph.D.'s in three years total. 

However, what saddens me is that when I was in graduate school, I identified a wonderful physical therapist at the GW Medical School who won an NIH grant and was collecting extensive data on older adults and their caregivers. I learned about her and met with her several times. She was eager for me to work with her and run my secondary analyses to obtain my Ph.D.. I was absolutely thrilled because with data, I would be able to write a dissertation and potentially graduate. When I shared the NIH grant proposal with my dissertation chair and shared the good news, her response was ABSOLUTELY not! She would not allow me to use someone else's data set. She wanted me to collect the data myself! I remember leaving her office that day in absolute hysterics. This is the complexity of being a graduate student. You are powerless! If you want to graduate you have to figure out how to work with your dissertation chair and effectively jump through those hoops. Which is why a majority of doctoral students drop out and only 2% obtain the degree. I am one of the 2%, and certainly one could say I am smart, but what I am is determine, tenacious, persistent, and I don't like being told NO!

Nonetheless after a three year long arduous search (and I mean arduous, as I called around the Country, willing to work with any corporation or agency that offered workplace support to their employees, employees who worked by day and then provided caregiving for an impaired family member when not at work), I did find a governmental agency willing to work with me. Yet, in July of 2002, I began data collecting. Keep in mind that Mattie was born in April of that year! So I was a new mom, and physically a mess. Not to mention exhausted from staying up all night with Mattie. I remember between caregiver interviews, I wanted to put my head down and sleep, but I never did. I pulled through it and in all reality, though it took me longer, I learned how to find research subjects, how to navigate my way through gatekeepers in agencies, and most importantly I got to hear for MYSELF the stories and insights from caregivers. No one can take that away from me. But what is clear, is the whole notion about being a doctoral student and the true harassment one experiences as a student will remain with me always.  

After Mattie got cancer, I wondered if those academic stresses I was under while pregnant caused his cancer. I thought about this quite often. Clearly I had to let that go, because it served no purpose. But like many milestones in my life, they are connected to Mattie, as I was determined to graduate before Mattie got older. 

Sunday, January 7, 2018

Sunday, January 7, 2018

Tonight's picture was taken in January of 2006. Mattie was in preschool that year and I remember asking his teacher, Margaret, whether there was a holiday activity I could do for the class. Margaret explained to me that December was a busy month, but would love for me to come in during the first week of January and bring gingerbread houses for the kids to decorate. Sounds good in theory, but I never made a gingerbread house from scratch in my life. Margaret gave me her gingerbread house molds, my mother in law gave me recipes for gingerbread and royal icing, and I did the rest. It is a lot harder than it looks, particularly trying to glue the pieces of the house together using royal icing. Mattie and his classmates LOVED the houses and you should have seen their eyes light up when they found out that the "glue" was really royal icing and was edible! Mattie actually got to bring both houses that I made home, after they were decorated. Mattie was very happy and proud and his classmates were equally thrilled to see, touch, and play with all the candy and icing. 


Quote of the day: A day without sunshine is like, you know, night. ~ Steve Martin

I am awaiting the 40 degree temperatures promised to us this week. I can't take the single digits and wind. The sun was glorious today which did help. Sunny continues to go out for walks regardless of the temperatures! 

We walked Roosevelt Island today, mind you this is after Peter walked Sunny at least 3 miles beforehand in the city. I couldn't get over what we saw today! Literally we there were six deer running in circles around us! Can you see this deer with his white tail. 

I did not have my phone out. But when Peter alerted me to deer, I scrambled for it, took my gloves off and started snapping photos. Frozen fingers and all.

The reason why deer were circling us is because someone let their dog off leash and this dog was chasing the deer something fierce. We tried to distract the dog, but this dog had a one track mind.

I caught several deer leaping in the air, which I know is hard to see given the background color matches the fur on the deer. 

Can you see the deer on our pathway in front of us? I have never seen six deer on the Island at one time. I am quite certain we wouldn't have seen them if it weren't for that loose dog. 

Mattie and Sunny would have gotten along great, because neither one of them was ever affected by the weather. No matter the temperature, they love being outside. It is something that I have gotten adjusted to over the years, and I almost forgot about my hours out in the cold on playgrounds or on our deck with Mattie. Sunny has reminded me of those moments in time and has picked up with Mattie left off.