Saturday, May 7, 2011

Saturday, May 7, 2011

Tonight's picture was taken in July of 2007. Mattie was having a swimming lesson at a local recreation center. What reminded me of this picture, was the simple fact that I revisited this recreation center today to attend a garden show. Mattie was very tentative about swimming and he truly disliked how cold the water in this pool was kept. The policy at this particular recreation center was that parents could only watch the lesson from a different floor, through a window. I was very apprehensive about him being by the water without my presence nearby in case he needed help. I tried to plan ahead and be cautious of things, so that Mattie wouldn't get hurt. The ironic part is with all of this planning and protecting, I had no idea that the real threat was growing inside his body. Something that was out of my control.


Quote of the day: Sorrow makes us all children again - destroys all differences of intellect. The wisest know nothing. ~ Ralph Waldo Emerson

Patches, my cat, woke me up at her usual howling time, 4am. She has upset my sleep for two weeks now, and I am not sure who was more excited to see Peter today, her of me?! Since I was up early, I did more Foundation work, and then I went out for the rest of the day. I started my journey today at a garden show. Through Mattie's preschool auction in March, I purchased two specially grown tomato plants. I went to the show today to claim my plants, and also came home with a sweet bell pepper plant. While at the show, I bumped into two other people from Mattie's preschool. Naturally the conversation turned to children. A natural topic of conversation for parents. These moms were talking about how they have no time for themselves, and how their children and their activities consume every waking hour. I remember those days quite well, and I know that venting as a mom is very important. So I did not find their topic of conversation inappropriate. But what I found interesting was they did not realize how their conversation could be perceived by me. I no longer have Mattie in my life, so I know quite well what it feels like to have NO childcare responsibilities, and technically I could do whatever I want, whenever I want now. But here is the thing...... this is definitely an overrated concept, especially once you have been a mom. It is very difficult to go from being loved and responsible for your child, to not having this role anymore. Naturally all moms will find this out once their children grow up and are independent. Even then though, these moms will always be moms, their roles may evolve, but their children will be physically present in their lives. So the comparison to my situation can never be the same. Nonetheless as I was hearing this chatter, I couldn't help but want to say (but didn't)...... careful what you wish for. Sometimes what you wish for, may not be as great as what you think it will be.

After the show, I wanted to stop by and see Mary, Ann's mom, and wish her a Happy Mother's Day. However, on my way there, I received an email from my friend, Tamra. Her daughter was volunteering at a local Alexandria event to raise money for after school tutoring and reading programs for children. So on my way to Mary, I first stopped by to see Meredith, Tamra's daughter. I got out of the car, gave her a hug, had some lemonade, contributed, and then was on my way. As I was leaving, there were two high school students in front of the event, holding and waving signs and encouraging people to stop in and donate. As I was pulling out of the parking lot, they saw me and and threw up their arms and gave me two thumbs up for stopping. It was a very cute gesture and it left a visual impression upon me!

I spent several hours with Mary today. One of her caregivers was with her, and he and I continued to talk for an hour straight while Mary was having her lunch. I could tell Mary was absorbing this conversation, and it kept her engaged and busy. Even Mary's roommate was enjoying the conversation and she stayed close to us for most of the afternoon. While visiting Mary, my friend Christine stopped by to give me a surprise Mother's day present. She told me not to open it until tomorrow, but it was very thoughtful of her to think of me in this way. Because as she knows with Mattie gone, it is a challenging day to say the least.

Later on today, I picked Peter up at the airport. The airport was an absolute zoo. The international travel area was packed with hundreds of people. It took Peter about two hours to process through customs. It is hard to believe he has been in transit for over 24 hours! When he got home, I helped him unpack and basically insisted that every item he travelled with get laundered. We had a nice dinner together outside on the deck. I could tell he enjoyed the fresh air and the freedom to decide when and what he was doing. After being on someone else's schedule for two weeks, that can be very draining. We had a very stimulating dinner conversation where I learned a lot about the culture in Bangladesh, Kenya, and Qatar. As Peter was talking, I could see that he really appreciated aspects of the cultures he visited and therefore returning home is somewhat complicated. As I was hearing him, I told him he was experiencing a concept called reacculturation. A very normal phenomenon that occurs when traveling abroad and then returning home. Clearly, when Peter left the US two weeks ago, he had to acculturate (a process in which members of one cultural group adopt the beliefs and behaviors of another group) quickly to each of his client environments. However, with this adjustment, it naturally exposed him to different ways of thinking and in a way he got to experience business connections on a personal and meaningful level. Mainly because in developing nations, people are VERY grateful and appreciative that you came to visit to share skills, expertise, and knowledge. For example, on the last day Peter was in Kenya, the conference of hundreds of professionals literally gave Peter a standing ovation. But it wasn't a typical clapping as we know it. It was a clapping with rhythm and done in unison with words!

Peter acculturated to his new environments, but upon returning home to his own culture, it can be confusing and challenging to reorient one's self. There are aspects of the foreign cultures that he may miss and perhaps long for. So in essence this is reacculturation, in which he now needs to readjust to living back in his own home and culture. Having studied cross cultural counseling in graduate school and being mentored by the US Father of Cross Cultural Counseling, everything Peter was saying to me made perfect sense. I understood it completely and I think in a way this surprised him, that there was actually a name for what he is feeling. I wish I could share in his insights and observations, but I realize when I don't understand something the best thing to do is listen and to ask more questions. So needless to say, we had a good dinner together, and even Patches was thrilled to be outside and enjoying our garden.

Friday, May 6, 2011

Friday, May 6, 2011

This picture was taken in July of 2007 on Roosevelt Island. This was one of Mattie's favorite rocks on the Island. It can be found near the only beachy area on the Island. Some of you may recall that on Mattie's birthday this year, I went to Roosevelt Island alone and planted forget me not seeds right near this rock.

Quote of the day: Grief teaches the steadiest minds to waver. ~ Sophocles


Based on how I have been physically feeling, I decided today to take a forced break and go for a massage and a facial. The massage I received was very different from any I have had in the past. Because this massage combined Shiatsu and Reflexology. I did not really know much about these techniques, but I learned about them today first hand. In addition to the massage, the therapist does deep breathing techniques, and she literally had me breathing and reminding me to relax. Post-cancer, I find that I naturally tense all of my muscles, even when I am sitting still. Therefore, I am all aches and pains everyday, and trying to give me a massage can be a challenge. I am a therapist's worst nightmare, because no matter how much you try to work through a knot, it simply remains.

Today I learned that shiatsu is a Japanese form of bodywork. The word shiatsu means "finger pressure," and shiatsu is sometimes described as a finger pressure massage. Like acupuncture, shiatsu is based on the holistic system of traditional Chinese medicine, where illness is thought to result from imbalances in the natural flow of energy, or qi (pronounced "chee") through the body. Shiatsu therapists use finger and palm pressure to energetic pathways, called meridians to improve the flow of qi. A scientific explanation is that shiatsu calms an overactive sympathetic nervous system, which improves circulation, relieves stiff muscles, and alleviates stress.

The massage therapist began my session by examining my feet and literally rubbing them. From just touching my feet, she identified every stress point in my body without me having to say a word. She let me know that she could tell I had the feet of a ballet dancer, small but quick hands, and the back of a lion (meaning that I carry the weight of the world on my back). The whole analysis was fascinating, because frankly if someone told me about this technique, I would have been skeptical. But apparently I learned today that my feet don't lie. Reflexology is an alternative medicine involving the physical act of applying pressure to the feet, hands, or ears with specific thumb, finger, and hand techniques without the use of oil or lotion. Reflexology is a form of bodywork that focuses primarily on the feet. The underlying theory behind reflexology is that there are "reflex" areas on the feet and hands that correspond to specific organs, glands, and other parts of the body. This picture is an example of a reflexology chart, demonstrating the areas of the feet that practitioners believe correspond with organs of the body.

Later in the day I spent several hours working on Foundation Walk items. In the midst of this, I had the opportunity to talk tonight with Toni, Brandon's mom. As many of my faithful readers know, Brandon was Mattie's big buddy at the Hospital. Mattie and Brandon were battling cancer at the same time. I am thrilled that both Toni and Brandon will be volunteering at the Walk this year. The Walk wouldn't be the same without Brandon. Brandon was Mattie's closest friend while coping with cancer, and in many ways they were good for each other. Though Mattie is no longer with us, he has permanently connected Peter and I to Brandon and his family. Through this connection, Mattie lives on.

I also traded emails today with Linda, Mattie's childlife specialist. Linda and several of Mattie's nurses will be at the Walk again this year and doing a surprise craft activity with the children in attendance. Needless to say, Mattie would have loved this activity because the item the kids will be making was one that Mattie always demanded from Linda during every hospital visit. We had quite a collection of these items by the time he was done with treatment. I am thrilled that Linda and Mattie's nurses will be at the Walk. I have the utmost respect for these women. They will always have a special place in my heart, because I saw them under the best and worst circumstances, and regardless of what was thrown their way, they always handled it was great skill, sensitivity, and compassion.

Peter flew today from Kenya to Qatar. But then he had an 8 hour layover in Qatar. The airline was very thoughtful and comped Peter a hotel room at the airport for his layover. He tried to sleep, but he is all thrown off time wise. He is now flying from Qatar to Washington, DC. A 14 hour flight! I will be picking him up at 4pm on Saturday.

Thursday, May 5, 2011

Thursday, May 5, 2011

Tonight's picture was taken in June of 2007. Mattie was at his preschool buddy's superhero birthday party. As you can see, Super Mattie was saving the day. He threw down a pretend brick wall in the background, and was removing all obstacles from the scene. He was zipping around that day, but I was able to capture him and his beautiful smile in motion.

Quote of the day: Grief is a process of awareness, of making real inside the self an event that already occurred in reality outside. ~ Parkes and Weiss


Today was a very busy day. It started with a phone call to Representative Van Hollen's office to discuss and get an update on the work we are doing together. Then it was followed by another phone call to Margaret, who is a writer for the Georgetown Pediatrics, a publication distributed by the Georgetown University Hospital. Margaret wanted to get a parent's perspective regarding Dr. Shad's (Chief of the HEM/ONC pediatric clinic at Georgetown) palliative care program she is establishing at the Hospital for pediatric patients. This program is being supported by a Hyundai Hope on Wheels grant which Dr. Shad received in the fall. Margaret wanted to talk with me because I understand all too well the benefits of palliative care. Palliative care is different than hospice or end of life care.

Palliative care is the medical specialty focused on improving the quality of life of people facing serious illness. Emphasis is placed on pain and symptom management, communication and coordinated care. Palliative care is appropriate from the time of diagnosis and can be provided along with curative treatment. In essence palliative care is integrated and coordinated care in which physicians work with social workers, therapists, chaplains, and other supportive specialties. As I told Margaret today, this type of care is the only effective way to manage a serious or terminal illness. Physicians can't solve their patients' issues alone, it takes a range of professionals involved to adequately address a pediatric patient's pain, nausea, loss of appetite, difficulty sleeping, and overall quality of life.


After these calls, I met up with Ann, her mom Mary, and Ann's cousins Helen and Ed. We took Mary shopping and out to lunch. As we left the restaurant we bumped into two other friends, Margaret (Mattie's preschool teacher and my friend) and Tina (my friend who just hosted a successful art show which benefited Mattie Miracle). While talking with Margaret, she could see I was tired and at times overwhelmed. As she was giving me a reality check, she put her forehead against mine and looked at me. A move that my dear Mattie used to do to me all the time. Something Margaret knows. I did not say anything to Margaret, but it was as if this motion was giving me a message. Needless to say, Margaret, Tina, and I had a great time chatting, and it was just a meeting by happenstance.

Later today, I decided to go get my haircut. That may not sound like a big deal, but since I haven't done this for at least 8 months, it became a big deal. I have been going to the same person, Celina, for over 8 years. In fact, Celina knew me before I was pregnant with Mattie, and then of course followed his life with me, each time I went in for a haircut. Perhaps it is me and how I interact with people, but all people I interact with are important. Making connections with others is a priority to me and if I am going to work with you, I am going to have to get to know you. I have followed Celina from one salon to the next, until she become the manager of the Molecule Salon on M Street, NW in the District of Columbia. I know about Celina's family and know her husband and her sister. Both of whom work at the salon. What I value about Celina is she appreciates family and also has a heart of gold. She supports all sorts of causes and when her employees over the years have gotten seriously ill, she cares for them in extraordinary ways. Besides being a good person, she also is skilled at what she does and listens to what you want rather than feels she knows what is best for you. A rare treat to find in a salon these days. Needless to say she was worried that she hadn't seen me in a while. She asked me about the Foundation's Walk in May and also asked me how she could help. She wasn't going through the motions, she seriously wants to help and she presented me with two concrete ways. The first is that she handed me a gift certificate worth over $350 as a raffle prize so its recipient can come to her salon for services. The second offer for help is she wants to come to the Walk with a few of her employees and have a nail art table for young girls. She told me she is doing this for us for FREE and all the proceeds she generates from this will come directly to Mattie Miracle. I don't know about you, but this was amazing to hear, and certainly not something I ever expected to happen today.

Celina's kindness further reminds me about the importance of making connections. Of conversing and listening to one another. It is through being human and making time for others, that true greatness can be achieved. I have attached a link to Celina's salon: http://www.moleculesalon.com/

Peter has his last day in Kenya tomorrow, and in the evening boards a plane headed back to Qatar. He has an 8 hour layover in Qatar and then a 14 hour plane trip back to Washington, DC. He is naturally exhausted and that should be NO surprise since he has been traveling four out of the last six weeks, and logging almost 37,000 miles in airline flights during that time!

Wednesday, May 4, 2011

Wednesday, May 4, 2011

Tonight's picture was taken in June of 2007. Mattie was attending his preschool buddy's super hero party. As you can see, Mattie was dressed as superman. Mattie and another friend were wrapping me up in paper streamers, apparently I was playing a "bad guy" and naturally all bad guys have to be rounded up and captured. I recall that day so well. It was extremely hot out and yet I remember Mattie's energy and the fun he had connecting with his friends.

Quote of the day: Mourning is love with no place to go. ~ unknown author

I started my day off by having tea with my friend, Christine. Christine and I were text messaging back and forth last night and she was providing moral support as I have been dealing with sleepless nights due to our cat and also because I haven't been feeling well. Sometimes receiving empathy from someone can make you feel better. Mainly because it makes you feel like you have been heard and matter. So this morning we met, chatted about all sorts of things, and also discussed the Foundation's Walk. Christine is in charge of registration, which is a huge logistical undertaking. Fortunately Christine and I have similar work habits. We are both very organized, focused, and thorough. While we were meeting, our mutual friend, Ellen joined us. As many of my readers know, Ellen is Charlotte's mom and Christine is Campbell's mom. Mattie's two closest kindergarten buddies. Ellen gave me some ideas for promoting certain items at the Foundation Table at the Walk this year, which I found very helpful.

So the Walk plans are solidifying quite well, but it is definitely a major undertaking. This afternoon, I worked on staging each of the 10 raffle baskets. Throughout the day, my friend Carolyn (our raffle chair) was emailing me and also giving me moral support on this task. As you can see it takes a great deal of moral support to chair a Walk, and I appreciate my friends who understand this and also find a way to let me know how they feel. Ann's cousins are in town from Massachusetts. I have gotten to know Helen and Ed for the past two years and really appreciate their openness and willingness to help. They have contributed to the raffle and also spent hours tonight with me wrapping raffle baskets. We completed six out of the 10 baskets. So I would consider that progress. To learn more about the raffle and the items were are featuring at the Walk, please click on the link:  https://www.mattiemiracle.com/Raffle.html

While at Ann's house, I had dinner there tonight. I haven't sat with her family in a while, and I almost forgot how lively it can be with children at the table. Children have an energy about them and as I sat there, all I could think was..... what a stark contrast to my life. A contrast that most people can't possibly imagine.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "Your thoughts about Ann's visitor yesterday were very powerful. Interesting how people with a common experience see it differently. It really isn't unusual, but, the experience reinforces our position. I do think that having another child does change the loss. She would have abandoned her other child had she not focused on its life and each of us cope with loss uniquely. Your relationship with Mattie was and is very intense. It resonates in the blog and with each photo and description, your commitment to Mattie is clear. He was a reason for life and love for Peter and you and you gave it your all and continue to do so with the Foundation."

Tuesday, May 3, 2011

Tuesday, May 3, 2011 -- Mattie died 86 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was on the way to his friend's superhero party, and he decided to dress up as Superman! As I look at this picture I realize just how appropriately dressed Mattie was. He had superhuman strengths and powers, and showed great bravery under the worst of circumstances.


Quote of the day: Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death. ~ Author Unknown


It was a busy day. Despite not feeling great, I worked through it to finalize our Walk's raffle. I have been working closely with my friend Carolyn, our raffle coordinator, and despite the fact that running a raffle can be very labor intensive and stressful, Carolyn has a good sense of humor and is organized. All things I greatly appreciate. The raffle is well on its way, and pre-sales tickets are selling quite well.

While at Ann's house today, I had the opportunity to meet two moms from her children's school. I hadn't met these ladies before, but as they were trying to figure out who I was, the natural question was, do you have children and where do they go to school? I don't bring up Mattie with people I don't know, unless I am asked about my children. When I mentioned Mattie, both of these women knew instantly who I was, since clearly Ann has spoken to them about Mattie. However, to my surprise one of the women admitted to us that she lost her first child to a house fire. She went on to tell us that she rarely talks about this and usually doesn't tell people. For her it has been 8 years since her son died. She told me that it does get better with time. I couldn't help myself, and I told her I did not think this was going to be true in my case. In addition, I told her that besides the loss of Mattie, I also lost a big part of my identity and future. She couldn't understand this actually, maybe because she has another child. I am not sure. What I do feel, as I have always suspected, losing a child to cancer is different than losing a child through an accident. Certainly this mom and I have commonalities, but she lost me when she said.... at least I had 14 months to prepare for his death. I get her point, but it was 14 months of hell, a hell I have tried to accurately describe on this blog. But words do not always cut it.

I spent the majority of the day sorting through raffle items, organizing and itemizing them, and then buying last minute things to finish each raffle package. The final touch is wrapping each basket, and I am happy to say we are now at that stage! I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen writes to us each Tuesday in remembrance of Mattie. It is hard to believe today marks the 86th week of Mattie's passing. Kristen wrote, "Things sound so exciting for the walk this year! I love the logo! You are creating such a wonderful event for a purpose that is close to your heart. It will be a huge success! Thinking of you this Tuesday and everyday...safe travels home Peter."

Monday, May 2, 2011

Monday, May 2, 2011

Tonight's picture was taken in May of 2007. As you can see Mattie was on our deck playing inside his sandbox. However, with Mattie playing was always creative. He got out a fishing pole and was pretending that all his sand toys were fish. He was trying to catch each toy and actually had some success in the process. With Mattie you always had to think outside the box, the conventional way of doing things would never do! He brought a certain life and energy into everything he did. We greatly miss the spark he added to our lives.

Quote of the day: Mourning is love with no place to go. ~ unknown author

For the past several mornings, Patches, our cat, has decided to wake me up at 4am. Considering I am not feeling well and need rest, I find her awakenings highly disruptive and very unsettling. She is truly going to appreciate Peter's return on Saturday. He has a way of controlling her behavior, I wish he would tell me his secret!

Peter is holding his own in Kenya, but being on very different time zones for 2 weeks has been quite challenging. When I get up in the morning, he has already lived that day and is headed to bed. As I was going to bed last night, my lifetime friend, Karen, emailed me and told me to turn on the TV because she wanted me to know that bin Laden was dead. I almost couldn't process what she was saying, until I flipped on the news and saw the reports for myself. She and I emailed back and forth about the news for a bit, and we even awaited President Obama's address to the world. Karen and I live in two of the cities impacted greatly by September 11, 2001. Certainly this wasn't only a New York and Washington, DC tragedy, it was a loss of great proportion for our entire Country. We lost over 3000 people and families were permanently affected by this horror. But in addition to this, many of our freedoms were also lost on that day. If you doubt that, then you just have to reflect on the way air travel has changed since 9/11. Regardless of one's political viewpoints and stance, the news about bin Laden was a unifying factor, citizens were outside the White House last night chanting USA... USA.... USA, and the Country Music station I listen to, played patriotic music and songs ALL day today. The funny thing though is as I went to bed last night, Peter was waking up, and I shared the news about bin Laden with him. The power of the Internet!

Before running chores today, I met up with Ann, Mary (her mom), and Shayla (Mary's caregiver). Mary was having a morning out and getting her hair done. For the past several hair outings Mary has had, I have been with her, so some traditions I try to uphold. While she was getting her hair done, we all talked together, something that I know Mary loves. In the midst of talking, I looked at Mary, and she gave me a huge smile. With Mary's neurological disease, smiling is rather challenging. So when I see a smile, it always gets me to stop and pause.

This afternoon I was on a mission to visit the Lego store at the Tyson's Corner Mall. This was by far Mattie's FAVORITE store to visit. I was scheduled to meet Liz, the assistant store manager. Liz has been EXTREMELY instrumental in helping us with this year's Foundation Walk. She has helped to secure volunteers to run individual build tables at the walk, she found a Lego artist to design a 20,000 piece Lego brick Mosaic of our Foundation's Logo, and she also secured members for the train users group to set up Lego active train displays at the Walk. Liz met Mattie in August of 2009 (a month before he died). Linda, Mattie's childlife specialist, arranged for a private event for Mattie at the Lego store, and Liz helped to coordinate this evening. In essence this was the last wonderful thing Mattie did before he died, and that evening was very bittersweet. In addition, to Liz, there were two other wonderful Lego representatives there that night, Brandon and Jared. Both of these men are volunteering at this year's Foundation Walk. I actually find these Lego folks to be absolutely incredible, generous, and compassionate people! Around 15 Lego volunteers will be participating in our Walk and several of them donated to the Foundation many Lego systems to be included in our Walk raffle. I am truly in awe of their kindness, and I even met another store employee today, Bernadette, who is volunteering at the Walk. She knew ALL about Mattie. It is a special feeling when people who NEVER met Mattie know about him and talk about him. In a way, Mattie has a legacy in that Lego store!  

Sunday, May 1, 2011

Sunday, May 1, 2011

Tonight's picture was taken in May of 2007. Peter and I took Mattie to the Air Show at Andrews Air Force Base. Mattie had a great time that day exploring the different aircraft and actually touring inside some of the planes. We were all blown away by the Thunderbirds air show, though Mattie found the sounds and the crowds at times overwhelming. 

Quote of the day: The only courage that matters is the kind that gets you from one moment to the next. ~ Mignon McLaughlin


It is funny to think that I have known Peter for over 20 years, and despite the fact that we understand each other well, there are aspects about grieving in which we are not always communicating on the same plane. Since Peter is in Kenya, we landed up chatting back and forth through email today. He was expressing his concern for how I was feeling and wanted to understand which particular stressor has caused me to have another physical flair up. He listed a whole bunch of issues I am dealing with now and as he was listing them he realized that in total it was a lot to handle. The irony is in my response to him, I included more items to the list of stressors such as Mattie's birthday, Easter, Mother's Day, and the pending Foundation Walk. In fact, I would say April and May are challenging months. But my point is despite how well we know each other, I can't expect Peter to be a mind reader. He knew that Mattie's birthday and Easter were challenging, but maybe not to the full extent. No fault of his own, I just haven't spoken to him about them. Naturally if someone doesn't verbalize a concern, we assume that it isn't a problem. However, for me that isn't always the case. Sometimes with things that are most difficult or stressful, I avoid talking about them altogether. Nonetheless, I am certainly thinking about them.

In one of our many email exchanges today, Peter shared with me a story about a katydid. Peter wrote, "I had a nice breakfast outside on the 1st floor (which is the equivalent of the 2nd floor in the US) on a covered balcony overlooking the pool. I read the paper, listened to birds, and there was a massive kadydid that suddenly sprung to the floor right near my table. This thing was over three inches long and was the largest I have ever seen by far. Once landed, it positioned itself so it was staring at me. I of course, thought of you know who, as there were no other bugs of any kind that appeared before or after this kadydid. It sat with me for about an hour, just staring at me, repositioning, and was fearless. All the waitstaff who came by never disturbed it. The same kind of yellow bird that I saw in Rwanda, also came by and tried to grab it as a snack, and this kadydid turned and fought off the bird for about three minutes. The bird finally gave up and left, and the kadydid returned to its focus on me. So, I'm re-reading this description and thinking that some people might read this and think I've completely lost it. So take the story for what it is worth, but it was an unusual encounter, and so I am open to these types of things, if not for the sheer uniqueness of it, but for also the hope that in some way it is a type of reconnection."



I spent the entire day at home and was glued to the computer. I was working on the hospital script that I have been telling you about. I will be delivering this script in front of hundreds of doctors on May 20 at the Georgetown University Hospital. The purpose of parents speaking is to give doctors a first hand account for what it was like caring for a child with a major illness and the importance of including the entire family in the care and treatment process. This event is well organized and rehearsed and therefore they require parents (3 of us are presenting) to write and read from a script. The script must be preapproved however. The deadline to submit the script was last week, so I felt compelled to sit down today and write. After working for eight hours straight, I was able to submit my first draft. I am sure edits will be needed, but it is a good feeling to have something concrete down on paper. In addition to my presentation, Mattie's technology teacher, Mary, is helping me put a four minute video together of Mattie. I want the doctors to have a chance to see pictures of Mattie and understand the consequences of his death. Sometimes the best way to have an emotional impact on others is to literally show pictures timed to music. The music I selected was actually given to me, after Mattie died, by Mattie's preschool director's daughter. The song is entitled, I'll Remember You, and though it wasn't a song the public would know, it is a very moving and heartfelt song, that when timed to the pictures makes a visual statement. I am so thankful for Mary's expertise and help, because I think messages are move powerful when you can use both words and pictures!