Saturday, March 17, 2012

Saturday, March 17, 2012

Tonight's picture was taken in January of 2003. Mattie was nine months old and riding outside in our commons space with "tot wheels." Tot wheels was my life saver because Mattie wanted to move around and have the freedom to choose what and where he was going. As Mattie would steer this walker all over the place, he also would be pressing the horn and other buttons making a racket wherever he went. Noise never bothered me, as long as Mattie was happy and content.


Quote of the day: How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these. ~ George Washington Carver


Despite admiring George Washington Carver's quote, one thing is glaringly wrong with it.... he assumed that all people age. However, in our case, we have learned that getting and growing old is not something guaranteed to all of us. Anyone who has lost a child, understands this reality all too well. So how far one goes in life may not always depend on these most valiant qualities Carver talks about.

Peter and I were super busy today getting symposium folders put together, attendee name tags printed and in order, and the list goes on. This evening I am working with our symposium scientific chair to upload all the PowerPoint presentations onto my computer for Tuesday. Amazing how she can be in Philadelphia and I am in Washington, DC and we are working on this in tandem. As I look over the presentation slides the researchers are sharing with me, all I can say is it is amazing to see all this psychological content in one place and it is very exciting to imagine it being delivered to an audience next week.

I am signing off for the evening, as we have another full day of work ahead of us tomorrow. But we are definitely on track now, despite some set backs here and there.

Friday, March 16, 2012

Friday, March 16, 2012

Tonight's picture was taken in May of 2003. On that particular day I took Mattie to the Reston Petting Zoo. The beauty of the Reston Petting Zoo is it doesn't have large crowds and the area is very contained and easy to move around in. For Mattie, crowds were problematic, and I tried to avoid them at ALL costs. However, Mattie loved animals and as you can see he was fascinated by this sheep who stuck her head out to greet him. I remember our visits to the petting zoo fondly. Mattie learned to feed the baby sheep and goats bottles, how to pet them, he touched an ostrich egg, and rode on several horses. But look closely at this picture because you will see Mattie's cute smile!

Quote of the day: Anger blows out the lamp of the mind. ~ Robert Ingersoll


Typically I would agree with this quote. Anger can be so overwhelming at times that it does block out reasoning and at times one's ability to accomplish anything reasonable and valuable. However, anger for me is typically a good thing. Mainly because I have a very long fuse (well that is unless you know me VERY well, and then I am more likely to let my guard down and express myself) and tolerate an enormous amount and can be very forgiving of other people's actions and behaviors. However, if you push my limits, my wrath isn't always pleasant. Yesterday was one of those days, yet I was able to channel my anger to get exactly what I needed to accomplish for the Foundation. I wouldn't have necessarily thought of it this way, but when our lobbyist called me tonight, he basically told me.... bravo! My forcefulness was NEEDED to get things in motion.

Today was another busy day in which I never left the computer. What could possibly take up so much time? Well in one short word.... SYMPOSIUM. The logistics of the symposium are huge. I am managing six researchers, the program, coordinating congressional guests, making sure my parent panel members are all set, the registration of 80 attendees, materials for the event, volunteers for the event, introductions of speakers, and the list goes on. Even if that was all under control, the simple notion of hosting an event at the Capitol Hill Visitor Center, could be a full time job!

This afternoon, however, I finally left our home and met Joe. Joe is the President of SparkLight, which is a communications and social media firm for non-profits. My friend Tina introduced Peter and I to Joe, and I have to say after an hour long chat, I felt like he was really great at brainstorming with us how we can achieve some of our more lofty goals. We discussed grass root campaigns and also the need to develop a strategic plan, which we may turn to Joe for help crafting such a vital document. Over tea, Joe sat back listened to us, and then told us he is thoroughly impressed with what we have been able to accomplish and the solid nature of our mission. He also was impressed with our yearly fundraising efforts, but then discussed how to expand that in order to be able to achieve some of our ultimate goals. It was a very fruitful meeting and in the midst of the stress of planning the Symposium, it is really good for me to hear from a complete outsider and professional that I am doing a good job and have the skill sets to continue growing the Foundation.

Thursday, March 15, 2012

Thursday, March 15, 2012

Tonight's picture was taken in February of 2003. Mattie was 10 months old and by that point zooming around in his "tot wheels." Mattie could navigate corners, hallways, and tight spaces with ease. Mattie typically would follow me into the kitchen and some how he figured out how to open the refrigerator door while at the same time sitting in something with wheels. To me that was remarkable, but he was motivated and intrigued by the refrigerator, all its parts, and contents inside.




Quote of the day: Courage is like a muscle. We strengthen it with use. ~ Ruth Gordon

I came across this quote tonight and it just spoke to me. It captures how I am feeling. The list of my frustrations associated with today are TOO numerous to mention and they also wouldn't be appropriate for all audiences to hear. So therefore, like a good 20% of other things I feel, I don't write about it. But to plan this Symposium took and takes great courage. It is unlike any other conference or event that I have previously planned and I think one reason for this maybe because the event is occurring on Capitol Hill. A place that has so many regulations it is hard to believe at times that it can function. Yet in order to have an event there, I need to follow certain guidelines which impacts our Foundation's flexibility and at times creativity.

In addition, I got a follow up phone call from my internist today who shared her thoughts about my medical condition. Thoughts which I did not necessarily agree with. I understand the uncertainty of my issue.... I have several masses inside of me that can't be biopsied. I get it, but I also get that radical surgeries and jumping to conclusions are also not wise. Whatever I decide, it will have consequences, and I absolutely despise when a doctor tells me what I should be doing without having the foggiest notion of the psychological ramifications of this suggestion. As if the psychological impact of a decision doesn't even need to be weighed! This call set me over the edge, and again it made me reflect on tonight's quote. I try very hard to become educated about my medical health and not get swept away by quick medical pronouncements. Mattie's case taught me very well. I learned that I have to ask questions, and when things don't make sense, ask even more questions. In addition, the scary part is doctors do not know everything as it comes to your health and they certainly do not have all the solutions to every medical problem. If they did, Mattie would still be alive today. So I am left to advocate for myself, make sense out of what I am hearing and try to make the most sound judgments possible. 

Balancing the Foundation work and this medical issue right now is overwhelming and as I told Mattie's chaplain on Tuesday night, there are times I feel like I am going to crack up. Or times I feel like I am all alone in this process, and with my feelings of loss (naturally Peter is right alone side me with this, but we can't always process our feelings together, it is too real for both of us). What it comes down to is I have feelings others can't always get or handle, and therefore, this year I have noticed that I have stopped talking to my friends about these feelings. I am a verbal person and an introspective person, and what I must conclude is that parents who have lost a child are really at the end of the day are left to suffer inside. Naturally that may sound harsh, but based on the day I have had, this is as nicely as I feel I can put it.  

Wednesday, March 14, 2012

Wednesday, March 14, 2012

Tonight's picture was taken in December of 2002, Mattie's first Christmas. After we decorated the tree that year, Peter transported Mattie in his high chair (NOT a favorite place for him to be) in front of the tree. Peter and I have not decorated for Christmas since December of 2007, and in many ways it has become a holiday that signifies more pain than happiness for us.


Quote of the day: What we see depends mainly on what we look for. ~
John Lubbock



The highlight of my day today was contacting Peter and asking him if he wanted to meet up for lunch. It was a glorious day in Washington, DC, in the upper 70s, and since Peter isn't feeling well (with his ear again, very reminiscent of last year!), I figured he needed fresh air and some sunlight. So I walked to his office and we sat outside for an hour and had lunch together. However, things went downhill for me from there.

I had my third acupuncture appointment today, and about an hour after the appointment, I developed a violent headache. My head hurts so much now, that tonight's posting will be short because I am having trouble looking at the computer. So until tomorrow and as always thank you for checking in with us!

Tuesday, March 13, 2012

Tuesday, March 13, 2012 -- Mattie died 131 weeks ago today.


Tonight's picture was taken in November of 2002 on our balcony. It is one of my favorite pictures because it captures us in front of this beautiful oak tree. This oak was important to me, because each spring as Mattie would bring tent caterpillars home from school and place them in a jar to watch metamorphosis at its best, we would turn to this tree's leaves to feed the caterpillars. Mattie is no longer with me, but this tree is, and it will always remind me of our times together.



Quote of the day: This is the miracle that happens every time to those who really love; the more they give, the more they possess. ~ Rainer Maria Rilke


This afternoon, I went to visit Ann's mom, Mary. Mary had a hard night yesterday and I was up late text messaging Ann back and forth while she was sitting with Mary in her care facility. Though Mary was awake, she wasn't up to talking this afternoon, so I spent some time chatting with Mary's caregiver. I believe this is good stimulation for Mary to hear talking, to be oriented to what is happening outside of her room in the world, and to know that people want to engage with her. Before I left Mary today, I sat next to her, and said that I think she is a special lady, and if anyone has the strength to make it passed last night, it will be her. With that she grabbed my hand and squeezed it. No words were necessary. With Mary, I see Rilke's quote come to life, for it is with giving love, I find that I do possess the ability to love and care more.

I spent the rest of the day working intensely on Symposium items and then this evening I returned to Georgetown University Hospital for a parent advisory board meeting. I will spare you the details on the meeting, but several of the parents on the board will be speaking at the Foundation's Symposium next week. These are special ladies who have incredible insights and perspectives to share. In addition to these moms, one of Mattie's nurses and Mattie's chaplain was at the meeting. These are women who saw me at my worst in the hospital and therefore it is very easy for me to share feelings and fears with them.

Maybe because it is a Tuesday (the day I associate with Mattie's death), maybe because I was actually at the hospital today having a meeting in the childlife playroom (a very important room for Mattie), or maybe because I am on overload with my own physical concerns that with Mattie's chaplain I began to cry. You should know that Mattie's chaplain was one of the people with us the morning Mattie was dying. She sat with us for four hours watching horror unfold in Mattie's hospital room. So when I cry, she understands very well what I have lived through. It is not only understanding it through my words, but she observed it for herself.

I would like to end tonight's posting with a wonderful blog link sent to us today by the Dean of Georgetown's Medical School. We met Ray (Stephen Mitchell) while Mattie was undergoing cancer treatment. Ray's son was in the hospital at the same time as Mattie, and many times we ran into Ray in the PICU. Ray understood the plight of a parent and related to many of our fears and concerns, because despite being a medical doctor, when he was caring for his son, he was a parent first. What struck me about this posting is that Mattie made an impression on Ray. As only my Mattie could do!!!!

Who gave the Dean such a Hair Brained Idea???

By Stephen Mitchell on March 13, 2012

https://blogs.commons.georgetown.edu/medthread/2012/03/13/3158/?utm_source=twitterfeed&utm_medium=twitter

Monday, March 12, 2012

Monday, March 12, 2012

Tonight's picture was taken in November of 2002. Mattie was six months old and doing what he LOVED best. Mattie wanted to walk desperately and we spent many an hour doing exactly what you see in this picture. That particular day my college advisor had sent me this cute hooded sweatshirt. Peter took a picture of Mattie in it, so we could send it to my biology studies advisor.


Quote of the day: To know even one life has breathed easier because you have lived. This is to have succeeded. ~ Ralph Waldo Emerson


Today was the kind of day in which I barely moved from my computer. I think my laptop has become my fifth appendage. As the Symposium is about a week away, there are all sorts of things I am doing this week to get ready for the event. However, what I wasn't expecting was that today I had to shut down registration for the event. Our congressional co-sponsors secured us a room in the Capitol Hill Visitor Center for our Symposium on March 20. The room capacity is 80 people. All of us thought that would certainly be enough room given the nature of the event. However, today we received over 10 registrations out of the blue and this brought us up to 72 attendees! Keep in mind that I have to allot space for 10 or more staffers to attend the event as well. So with this influx of registrations today (which didn't look like they were going to stop!), I was desperate to shut off the system and contacted Peter at work for help! After all, I can't have people registering to attend an event, if they can't fit into the room! So I am proud to say, we are having quite a turn out for this event and our attendees are coming from 12 different states, some as far away as California!

When Peter got home, he could see I was wound up tighter than a top. So he separated me away from my fifth appendage and we went for a walk on Roosevelt Island. I was still spinning for the first portion of the walk, but then began to calm down. Along the path, we met a family with two young boys. The boys eagerly wanted to tell me about their findings. They pointed the way to pile of snakes that they felt needed to be seen! They reminded me of Mattie with their interest in these slithering creatures. I refused to go off the path to find these creatures, but Peter took the camera and reported back. He actually took several pictures of about 5 snakes, all looking at him and slithering close to him. Yuck of grand proportion! I thought he captured this one very well, tongue and all!

Despite the content in the above picture, I took peace in seeing that spring has sprung at Roosevelt Island!

I leave you tonight with this glorious field of yellow flowers budding on Roosevelt Island. It was in the 70s today, and it felt like spring and a time to pause and appreciate the renewal of the season upon us.

Sunday, March 11, 2012

Sunday, March 11, 2012

Tonight's picture was taken in November of 2002. Mattie was six months old. In a way, this was an unique picture because Mattie strongly disliked his front carrier and therefore was rarely in it! As I described in last night's posting, Mattie had a puppy hat and jacket that I absolutely loved him in. As you can see Mattie was wearing the hat but he also wasn't smiling. He simply wasn't happy being carried and confined in this way!


Quote of the day: I count myself one of the number of those who write as they learn and learn as they write. ~ Augustine of Hippo


I very much relate to St. Augustine's quote. Since July of 2008, I have written in this blog each and every day. It has become a way of life for me, and as some of my faithful readers tell me, it is a way of life for you too. Some of you begin your day reading the blog, and others of you end your day, right before going to bed, reading Mattie's blog. We still have about 300 readers who visit the blog each day, and believe it or not this July, will mark four straight years of DAILY blog writing. Writing a daily blog takes great discipline, patience, commitment, and at times courage. It was a lot easier writing each day when Mattie was alive. Mainly because I was updating you about his treatment, how he was doing, how we were adjusting to living with the nightmare of childhood cancer, and as a result my daily writing helped to form a virtual community. A community who would mobilize into action if I wrote we needed an item for Mattie. I recall one day writing that Mattie needed training wheels for his bicycle, because he was home from the hospital and wanted to ride his bicycle (Before Mattie developed cancer, we took the training wheels off his bicycle, to teach him how to ride with two wheels. However, after cancer struck, it was too dangerous for Mattie to ride a two wheel bicycle, and therefore we needed to put the training wheels on again. However our home was in total chaos during his cancer battle, and I couldn't find his training wheels in the closet.). Within a matter of a day, I had four sets of training wheels at my doorstep.

Writing now, in a way, is a bit more complex. It is complex because I am sharing our grieving process (as I always say, my blog covers about 80% of what we are dealing with, the other 20% I typically do not publicly share!). A process that isn't always easy to hear about and most certainly can leave the reader wondering how on earth can you possibly help us? During Mattie's cancer battle, the needs were very basic and involved tasks (tasks to get food, toys, laundry, etc). These tasks are not relevant for us now, yet that doesn't mean we don't have needs. Our needs are much more emotional, and therefore much harder to figure out and to devote time, energy, and effort to. St. Augustine's quote however, makes me reflect on the importance of writing. One of the most basic learning tools I always turned to throughout my life while trying to understand a subject matter, was writing. I would re-write my class notes at times when I was in school, because the sheer act of writing seemed to solidify concepts for me in my head. The blog, over the years has provided me with an outlet to write and to write and to write some more! It is through writing that I learn, process, and have begun to understand the full impact of Mattie's cancer on my mind, heart, and body. Are there some nights I rather not write???? Most definitely!! But the blog no longer is just a tool to keep our Team Mattie informed. The blog is in essence the vehicle I use to keep Mattie alive. For it is here in WORDS that I am able to paint a picture of what Mattie was like as a child, how brave he was throughout his battle, and how we as a family fought and continue to fight the trauma of childhood cancer.