Saturday, March 28, 2014

Saturday, March 28, 2014

Tonight's picture was taken in September of 2008. This maybe one of my favorite photos of Mattie while he was in the hospital. It was taken early on in his treatment. That day, my friend Susan came to visit Mattie. With her, she brought a kit. The kit had clay, a plastic pick, goggles, and plastic dinosaur bones buried into the clay. Literally Mattie had to go on a dig through the clay to reveal the bones and then assemble them to form the dinosaur you see before you in this photo. It took Mattie hours of digging and assembling. He was exhausted after it was over, but he thoroughly enjoyed the project. He found it engaging, stimulating, and gave him something to focus and concentrate on. He got lost in the project and forgot about cancer for a while. The hospital room was transformed into an archaeological site, with sheets on the floor capturing clay and dust. Mattie loved it! I found the whole scene so priceless and his finished product so meaningful, that I snapped this quiet moment of success! 


Quote of the day: Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well. ~ Theodore Roosevelt


Peter and I are running around today getting ready for the Georgetown Gala. I promise to take photos and to also share my speech with you on Sunday. I included two links below that maybe of interest. One is some history about the Gala and the other is specific information posted on the Gala website about Mattie Miracle being the Flame of Hope recipient. Thank you so much for your emails of support and encouragement. This is a big day for Mattie Miracle!

http://pediatricsgala.georgetown.edu/history

http://pediatricsgala.georgetown.edu/flameaward

I would like to end tonight's posting with a message from my mom............ 

The day of the big event has finally arrived. It is a wonderful opportunity to connect with new potential donors. You have the charisma and intelligence to move and inspire people to be their best and to use their time and treasure to make this a better world. It is our fondest wish that in receiving the "Flame of Hope" Award that Mattie will be beaming from his perch in heaven as he hears you make the case for Mattie Miracle and raise awareness for the psychosocial needs of children with cancer that face the trauma of invasive treatment and isolation. We hope this gala evening will bring attention and exposure to Mattie Miracle  and its hard work and reflect your passion for the cause. You deserve this recognition for all the good you have made possible for these children and may your efforts continue to be the clarion call that gives voice to this otherwise unseen need. Your speech will connect you to your audience and we know there will not be a dry eye in the place when you finish. You have the power to communicate and tonight that power will shine. Good luck!

Friday, March 28, 2014

Friday, March 28, 2014

Tonight's picture was taken in March of 2009. That day we took Mattie for a walk in our neighborhood to get some fresh air. Funny how March in 2009 was more spring like. The cherry trees were in bloom. Unlike now, where everything just seems grey and winter like. Despite fighting cancer and being in a wheelchair, Mattie claimed a stick. No walk was ever complete for Mattie without finding a stick to take home from the journey. What a stick collection we had developed over the years!!! Our commons area was FULL of them! 


Quote of the day: Pain has a way of clipping our wings and keeping us from being able to fly ... and if left unresolved for very long, you can almost forget that you were ever created to fly in the first place. ~ WM. PAUL YOUNG


I want to thank so many of you who have emailed me to wish us luck on Saturday night as we accept the Flame of Hope award at the Georgetown University Hospital Pediatric Gala. Peter and I have been working on what we plan on saying as we accept our award and I suppose in my typical fashion I make things much harder on myself. We could just go up there say a few words, say thank you, take the award, and sit down. But somehow that isn't me. Nor would I feel this would do justice to Mattie's battle and why we started the Foundation. Peter will speak about the Foundation and highlight our activities for the audience and then I will spend a few minutes talking in a personal manner about what the award means to us. This has been a very well thought out and crafted speech. Or so I hope! I realize one thing about words.... words have much more of an impact when they evoke feelings. Therefore, it is my ultimate goal to convey a message filled with feelings and through feelings I hope people will remember us and Mattie Miracle. At least enough to want to visit our website and learn more about us!

Today we had a surprise visit from Peter's brother, sister-in-law, our nephews, and niece. Nat, our 17 year old nephew was in town looking at Georgetown University. Peter and I know Georgetown all too well. Peter is a graduate of Georgetown and of course we lived at Georgetown with Mattie during his treatment. I love photos and therefore wanted to capture this moment in time! From left to right is Peter, Will, Sydney, Nat, and me. Will and Mattie were actually about two years a part in age. So literally in our family it went Nat, Sydney, Will, and Mattie. This photo is somewhat bittersweet, because as you can see our Mattie is looking down at all of us. For me Mattie will always be stuck at age 7, yet when I see Will, I realize, Mattie would really be closer to Will's age now, than the little boy I remember. It is hard to wrap my head around this, but just like Mattie is frozen in time, to some extent, I too feel frozen in time. My friends are parenting teenagers and to me, I feel chronologically younger...... I will always be younger..... stuck parenting a seven year old child. Putting that aside, it is always nice to see our nephews and niece and it was interesting to see and hear about college campuses through their eyes! 

Thursday, March 27, 2014

Thursday, March 27, 2014

Tonight's picture was taken in March of 2009. Next to Mattie was Meg. At the time, Meg was a new child life intern. We went through several interns while at Georgetown. Mainly because we lived at the hospital for over a year. Prior to Meg, we had Whitney and Lesley, who we had come to love and adore. So naturally, having to say good-bye to young women you had come to know and trust was hard. This was the environment Meg walked into. Also Meg walked into a sicker and more traumatically fragile Mattie. Somehow that did not stop her. Mattie was more fragile and I was more protective and volatile. I don't think I snapped Meg's head off the first time I met her, but her style was different from Whitney and Lesley's. Meg is bold and full of energy, not unlike my Mattie. So guess who responded to her RIGHT away. Mattie would challenge her and yet she did not back away, she seemed to be able to take it, and yet in her own subtle and very professionally appropriate manner would egg him on, so that Mattie would want to come out of his shell, Mattie would want to participate in physical therapy, and would want to play and be a part of the world. I did not question why it was working, I was just grateful to Meg that she had a channel into getting and relating to Mattie. 

Quote of the day: Bill Hemmer:  "You said cancer changes your life, and oftentimes for the better."Joel Siegel:  "Yes.... Gilda Radner... said this in her book.  What cancer does is, it forces you to focus, to prioritize, and you learn what's important.  I mean, I don't sweat the small stuff.  I used to get angry at cab drivers.  It's not worth it.... And when somebody says you have cancer, you realize it's all small stuff.  And what Gilda said is, if it weren't for the downside, everyone would want to have it.  But there is a downside." ~ American Morning, CNN, 13 June 2003


Tonight's quote captured my attention when I read it. Many times when we think about cancer, we naturally think of only the horrors. As we should, because really the horrors outweigh any benefits. In fact, I am not even sure I feel good using the word benefit and cancer in the same sentence. But with that said, when you experience cancer in some shape or form, even as a caregiver, it does profoundly change your life. Which was what Gilda Radner was referring to. 

I remember when Mattie was diagnosed with cancer and we were in the hospital battling his disease, I honestly wasn't thinking about any sort of schedule. I wasn't worried about what I was doing tomorrow. What work deliverables were due. What needed to be scheduled next week or next month. There were NO plans, I did nothing, planned nothing. I did not go grocery shopping, I did not clean our home, I did not get the mail, I did nothing. It is like I took a moratorium on living. The only sole focus I had was caring for Mattie. I say only, lightly. Because only was INTENSE. I took on 24/7 care, nursing care. I learned about medicine administration, dosages, pain pumps, broviacs, infections, and the list went on. Back then I longed for the normal chores! Yet giving up the normal everyday tasks enabled me to live in the moment. To be fully present with Mattie. To play, to listen, and to not be distracted. It is hard to do that in the real world, when you maybe working with all sorts of distractions pulling at your time and attention. So unfortunately I truly get the reality of Gilda Radner's message.

This fall as I went through Mattie's clothes, I set several pieces aside to give to my friend Terri. I met Terri at Georgetown Hospital. Her son is a cancer survivor. Terri is a master quilter and I decided to have her create a memory quilt for me using over 20 shirts and items of Mattie's. She has been working on it for a while, but it should be done some time in April for Mattie's 12th birthday. Terri and I talked about it last night on the phone. As we were talking, it was ironic that Mattie's clothes told a story about him. It was very evident to Terri that Mattie loved nature and animals from his clothes. All of which is true! But I included all sorts of interesting clothing items for Terri to incorporate into this quilt such as Mattie's santa suit. Which was the suit he took his first Christmas photo in, his super Mattie cape that Jenny (his art therapist) made for him at the Hospital, his puppy dog onesie with actual floppy ears, and the list just continues. I have a feeling Terri is giving this quilt a three-D quality since I have seen some of her masterpieces. I look forward to seeing it and capturing some of Mattie's memories in this way.   

Wednesday, March 26, 2014

Wednesday, March 26, 2014

Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see he was outside and in his sandbox. We had a heater outside to keep him warm since it was still chilly out. The goal was always to prevent Mattie from getting any sort of infection which could set him back health wise and time wise from getting his next round of chemotherapy. Mattie loved his frog sandbox, which maybe why it is one of the items I still can't part with. It sits outside our deck door, in our commons space. Kids from all of the complex come and play inside the frog box and on rare warm days, I can hear the fun and excitement they are having in the box. Reminiscent of Mattie's sounds of joy!


Quote of the day: Old friends pass away, new friends appear. It is just like the days. An old day passes, a new day arrives. The important thing is to make it meaningful: a meaningful friend - or a meaningful day. ~ Dalai Lama

I came across Dalai Lama's quote today and it brought me great puzzlement. I get the point about making each day or interaction meaningful. That is certainly the goal or perhaps the ideal, but I also think not reflecting on old friends and days passing is not a good plan either. Yes a new day may arise, but new friends do not necessarily replace the tried and true friends that you had. So from my perspective days and people should not be equated, so the whole quote lost me. So I spiraled downhill with it and the meaningfulness was lost on me. 

I went for a walk today, in the wind and the snow. It was bitter and painful. What a start to spring. It is absolutely pathetic. This Saturday, the Mattie Miracle Cancer Foundation is being honored by Georgetown Hospital at its Pediatric Gala. We will be receiving their distinguished Flame of Hope Award. Peter and I will say a few words in front of hundreds of guests. I remember when I was growing up, my dad would always tell a joke about a man who was told that "after lunch you will have to say a few words." Just that notion, scared this fellow to death! Just think about... having to say something meaningful in a few word can be daunting and overwhelming.

I have spent weeks on trying to write out what I am going to say on Saturday. Peter is working on his portion as well. The folks running the Gala committee actually asked to see my script beforehand. However, I do not share my written words until I deliver them. That is just my own personal style. But I knew a script was needed and I will share the script in Saturday's or Sunday's blog with all of you. However, today while working on this script, I sat down and felt overwhelmed. I try to become one with my speech so that it flows more naturally from my head as I deliver it. But with my headache, I am lucky anything is flowing from it at all. Again, I remembered another one of my dad's great sayings. He says, the only way to eat an elephant is one spoonful at a time. NOW he doesn't mean literally eat an elephant, he is just talking about attacking a large task. When you look at it in total it is overwhelming, but in small chunks it becomes much more manageable. You know the saying..... Father knows best! Dad's advice definitely helped today.  

Tuesday, March 25, 2014

Tuesday, March 25, 2014 -- Mattie died 237 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was in the hospital's clinic and that day they were visited by United Airlines. The employees came to deliver teddy bears. As you can see Mattie not only accepted a bear but agreed to take a photo with several of the United representatives that day. Mattie had a big smile and clearly was in a happy mood. That wasn't always the case with a clinic visit. So capturing such a moment and seeing it now really in a way caught me off guard. These are not moments I remember too frequently. 



Quote of the day: If suffering brings wisdom, I would wish to be less wise. ~ William Butler Yeats

We are almost at the end of March and we had MORE snow today! It becoming a joke in DC. Everyone is sick of it! Kids too! It is no longer fun, cute, or peaceful. Now it is just wearing, depressing, and we are all ready for it to be over. We are ready for spring. Despite the grayness, cold, and snow, I went to zumba class this morning. I was the only one who showed up! However, thankfully my teacher held class for me anyway. As my faithful readers know, Jenny isn't only my zumba teacher, but her daughter was in Mattie's kindergarten class. Mattie connected me with so many people. After he died, I have found that it takes a lot more work to keep certain connections and ties that once existed alive. After all, Peter and I no longer travel in the same social circles as our friends and therefore are not interested in the same things. That may sound like very subtle differences but these are actually huge differences, because it is like putting together couples with children and couples who are empty nesters. The commonalities and priorities are just different. Yet the analogy is still not accurate because even with empty nesters, an update can be given about their children and the involvement that they have in their lives. 

 

I spent the rest of the day working on different things from home and then the natural excitement to my afternoon was a "Baby Falcon" sighting on Mary's bird feeders which I just added to our commons area. This evening Peter went out and snapped several photos for me. That is how long this bird has been hanging out all day! His mom/dad which also canvases our area is massive and a daunting bird to have around. This baby is a lot smaller and actually is very photogenic and doesn't mind posing. As you can clearly see. The baby has flown onto our deck, has sat on the bird feeders, and is swooping all around. It has scared away all my sparrows for the day, so I am ready for it to move along!

Monday, March 24, 2014

Monday, March 24, 2014

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom making ice cream. He was wearing a mask that day because his white blood cell counts were low and this was to help protect him from further infection. Personally as a parent I understood the dangers of germs for Mattie, yet I had to balance the dangers with sound decisions about his psychological and social health. Chemotherapy not only kills cancer cells, it also kills our good cells too, the one's that fight off illness. However, there was a problem with further isolating Mattie. He was already isolated enough, more isolation for the sake of protecting him was counter productive for him. Yet what also weighed heavily on my mind was the simple fact that if Mattie got an infection that made him sick, not only could this compromise his health but it could also delay his next round of chemo (which of course could mean that his cancer could take hold and spread). So living with cancer was always an amazing game of odds and risks. Each day, not just on treatment day. I tell you this, because something that looked so fun..... even that I had to think about and assess the pros and cons.


Quote of the day: We shall draw from the heart of suffering itself the means of inspiration and survival. ~ Winston Churchill

I had an appointment with my neurologist today. I haven't seen this doctor since 2010. That is a long time. I will spare you the details as to why I haven't been back in four years, but given my headaches now, I had no other choice. When I met this doctor four years ago, I nick named him "Mr. Personality." I gave him this name not as a compliment but as a sarcastic description for his lack of affect and human connection. Honestly I had very low expectations for today and if it weren't for my internist suggesting I see him, I most likely wouldn't have made the appointment. I am not sure why seeing a neurologist in the Washington, DC area is such a hot commodity, but it is. I know friends of mine who desperately needed to see one and tried all over town to no avail. Many practices aren't taking new patients. So one friend in particular landed up in the emergency room. What a state of affairs. 

Any case, I would consider myself a returning patient, but since I haven't been seen for four years, I am considered a somewhat new patient and had to fill out a ton of forms this morning. Not just any forms, but the bubble type of forms. If I did not have a headache, after the forms, I most certainly did. I guess I have gotten so used to living with chronic intense pain, I down play the problem. Yet when the doctor saw me today, I wasn't expecting his reaction. His reaction was that of concern, he listened (wow, so that is in the play book somewhere!), and he even told me not to minimize my experiences. So by the time I told him the reality of the picture, he said I should have come in sooner. I am so used to having to down play head pain because some many truly gets it. I look fine to most people and seem to act fine, but to him, he could see I wasn't fine. Hallelujah! I experienced him in a totally new light today. 
   

This afternoon, I went to retrieve my friend Mary's bird feeders. My faithful readers may recall that before Mary died, I bought her two bird feeders with a plant stand and placed them outside her window. I moved these feeders and stand to my home today. It now resides in my commons area. In between the trees that Peter planted with Mattie. When Peter and Mattie planted these trees years ago, they were tiny things. Now some of them are over my head. Needless to say, I snapped this photo from my desk which sits by Mattie's window. The sparrows have already found Mary's feeders and are happily eating away. Now when I look out onto our commons garden area, I think of Mattie and Mary. 

Sunday, March 23, 2014

Sunday, March 23, 2014

Tonight's picture was taken in March of 2009. Mattie was home in between treatments and playing with one of his favorite train sets. He got this set when he was a toddler. I remember buying it with him in Target. He helped me pick it out and I remember taking it home that day and setting it up and playing with it together. No matter how old Mattie got to be, he still wanted to play with this set. I think what intrigued him so much about it was that the trains moved on a battery powered track. In addition to that they also picked up and dumped items into buckets and tubs. Mattie just loved watching the animation and while battling cancer, the fact that the trains moved on their own made it even easier for him to play along, not unlike when he was a toddler. 


Quote of the day: Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~ Helen Keller

I would say we had an absolutely exhausting weekend. But in all reality our exhaustion started in September. It was in September that we started a massive clean out and overhaul of our living space. We started painting our whole first floor and then in October I began to seriously reorganize Mattie's room. That alone was a super human undertaking. As a result I donated over 60 large garbage bags filled with clothes and toys to Good Will. Then we began painting our second floor. All in all, we have been busy from a personal reorganization stand point since September. It has taken a great deal of self discipline, inner strength, courage, and motivation to do this. It isn't easy to go through any of Mattie's things, much less part with them. So Peter and I have had to make tough decisions. Decisions that most people are never faced with. Therefore painting this weekend wasn't really only about painting this weekend..... it comes on top of reorganizing downstairs, upstairs, massive donations, painting, and then more painting! Peter captured some of the the chaos this weekend!

I had no idea Peter was taking photos today, but trying to paint in some of our spaces is challenging. You should see how we managed the 10 foot ceilings. We do have an extender ladder, but it is like being in the circus! We picked a color for the hallways called "Calm Air." It is hard to tell given the light, but it is a lovely creme color, but it blends so well with all the other Tuscan colors we have chosen for our home.

We were at it all day yesterday and today! We are thrilled to say it is done! Every thing is now rearranged and back on the walls. We have another big spring project ahead of us on our deck, so I knew this project had to get done and complete otherwise we would never do it. We have come so far, it would have been a shame not to get it done.

This photo is deceptive because I took it at night, but the color is vibrant and the hallway is now decluttered. I am great at "organized clutter." If that was an actual look, I would be the queen of it. But with simplifying one's life, comes decluttering, and that is what I am trying to do. I wish I took a before shot, because if you saw what the hallway looked like before, then you would see the improvement.