Saturday, October 8, 2011

Saturday, October 8, 2011

Tonight's picture was taken at the US Arboretum in April of 2005. The memorable part about the Arboretum for me are the azaleas. The azaleas are always in full bloom at this park during Mattie's birthday. My commentary to Mattie was that they bloomed as a birthday present to him each year. He liked that notion and loved exploring the paths at the gardens that meandered through hundreds of azaleas in all sorts of shapes and colors. Colors that can only be produced by nature. It seems hard to imagine that this bright, healthy, and lively little boy then developed cancer and died. This just doesn't seem possible, and yet this is our daily reality. 

Quote of the day: I believe that imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death. ~ Robert Fulghum


As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.


Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


Today was a busy touring day for Peter and I. We toured around for hours and walked several miles along the way. Peter reminds me that we are getting very unseasonably warm weather on the Cape this weekend. By the afternoon, it was in the 70s, and simply beautiful. I will describe our day through pictures for you!

This morning, as we drove down to the end of the house's driveway, I was determined to get out of the car and walk around to find the road sign! You may recall that last evening when we arrived at the house, we NEVER saw the street sign. Here is why!!!! The street sign is a little wooden sign attached in a slanted manner to a telephone poll.

Our first stop today was to Ballston Beach. This is the closest Atlantic Ocean beach to us and the owners of the house we are staying in left us a note suggesting we might like this beach. Peter and I did not only like this beach we LOVED it. I have never seen a beach like this for many reasons. First of all, there was sand for as far as the eye could see. It was pristine and basically other than fisherman, there was no one on the beach. But here is what makes this beach unique to me. As you walk closer to the water, look what happens (picture below).

There is MAJOR sand erosion! In order to walk down by the water, which we did, we literally had to slide down this sand bank. It was a true experience! I then went to put my feet in the water and practically screamed. The water was frigid.



The beach was visited by many seagulls. Peter captured this one today walking with us.

However, here is the sight that made our visit extraordinary! A sight I have never seen in nature before! While Peter was walking down the beach and collecting things like shells and drift wood, I was staring out into the water. All of a sudden, I saw something. I screamed and flagged Peter down. He came running over and I told him I thought I saw a dolphin. However, this was NO dolphin. I saw three seals.



Peter got a close up of one of the seals! While we were appreciating these wonderful creatures, we approached an older woman who was watching along side us. We learned that this woman worked for IBM for 37 years, along with her husband. When she and her husband retired, they moved from NY to Truro, MA. However, the sad part is her husband died five years ago. She was telling us that her husband built her the Cape Cod house but they did not get to enjoy it together. She told me she still hasn't gotten over his loss, that it can be very depressing, however, being by the ocean makes her feel better and more connected to her husband. In fact, she said that nature makes her feel better. I did not tell her about Mattie, and I suppose she was telling me this because she looked at me as being a young person who may not understand the significance of such a loss. The irony is I understood all too well, and completely relate to her feelings about nature and the ocean.  

After our amazing walk and beach sighting, we then drove to Highland Lighthouse. This lighthouse was built in 1797 and is the OLDEST lighthouse on the Cape. In July of 1996, the lighthouse was moved 453 feet back from the edge of the eroding cliff to save it from falling into the ocean. I love Henry Thoreau's quote about this lighthouse. He said, "A man can stand here and put all of America behind him." Since we are standing on the most Eastern part of the US, this statement is literally true!

After we walked around the outside of the lighthouse, I urged Peter to take a tour inside the lighthouse. I told him you can't go to a lighthouse and NOT go up! Being a lighthouse affectionato, I love learning about their history and the lives of those who maintained these beacons of light. I snapped a picture of Peter climbing up the 69 steps. Though that isn't a lot of steps, they were incredibly steep! At the top, a ranger met us and shared some information with us about Highland Light. This lighthouse's light flashes every five seconds and the color of the light is CLEAR. I learned today that every lighthouse has a different lighting timing and a different color it emits (some emit a white or red light for example).

This picture was taken at Pilgrim's Pond in North Truro. This sight marks the spot where 16 pilgrims in November of 1620, camped and spent their second night on American soil. After spending time in Truro, we then drove to Provincetown. However, everyone and their cousin was there and we couldn't find a solitary place to park. So we quickly left the congestion and went to the town of Wellfleet. Wellfleet was charming and we had a lovely lunch outside on a terrace at a restaurant called Winslow's Tavern. Winslow's Tavern is named after a Pilgrim family who visited Wellfleet in 1620. The historic building was first constructed in 1805 as a home for a sea captain, and was once the home of former Massachusetts' Governor Channing Cox. It was during this time in the 1920's that then President Calvin Coolidge was a guest for the night. The building has been a restaurant for over 40 years.

After lunch we drove to Great Island, which is a park that is part of the National Seashore. As we walked out to Cape Cod Bay, we were surrounded by low tide which produced incredible tidal flats for as far as the eye could see. We walked on this and collected all sorts of shells and rocks.

Walking on these tidal flats was an experience and right along side us were seagulls and lots of children digging in the sand. The last sign of nature that shocked us along our journey today, was a flock of wild turkeys eating along the side of the road. We were driving when I saw them and we had cars behind us, otherwise, I would have been capturing them in photos too!

Friday, October 7, 2011

Friday, October 7, 2011

Tonight's picture was taken in April of 2005. As you can see, Mattie had one of his sets of train tracks out and had TAPED them to the hard wood floor. Before having Mattie in my life, the idea of having tape on my floors wasn't a notion I would have considered much less allowed. However, raising an active and curious boy forced me to think outside the box and what I found was when I did the possibilities for fun, exploration, and learning were endless. I find it ironic that I was the trained educator, and yet one of my greatest teachers was decades younger and less experienced than me..... Mattie! You should also note in this picture the sippy cup. Some kids have a security blanket, a stuffed animal, or a toy that they are attached to. Mattie's source of comfort came from his sippy cup and the cup had to be filled with milk. It did not matter where we went, this cup came with us, and naturally because it was milk, along came a cooler.


Quote of the day: Do not surrender your grief so quickly, Let it cut more deeply, Let it ferment and season you, As few human or divine ingredients can. ~ Hafiz of Persia


As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


Today was an amazingly LONG day of car travel. Peter and I left Washington, DC at 7:45am and arrived in Truro (located in the upper part of Cape Cod) at 5:30pm. In our nine hour commute, we only stopped once for about 10 minutes! We traversed NINE states (Washington, DC; Maryland; Delaware; New Jersey; New York; Rhode Island; Connecticut; and Massachusetts!), saw deer along the side of the highways, saw hawks, and one eagle.

The last time I visited the Cape, I was in single digits. So it has been a while, and I must admit, I have never been to Truro. Peter spent many summers as a kid camping in Truro. So thankfully he is familiar with this territory. When he urged me to leave early from DC today, I heeded his advice. Fortunately I listened to him because I would not want to check into the house we won from Mattie's preschool auction in the dark. Truro is beautiful but untouched and therefore doesn't have street lights and has trees for as far as the eye can see. Honestly I am not sure how Peter even found the house because the street (if you want to call it that!) was not sign posted. At one point it looked like he was going up a dirt road, which I assumed was someone's private driveway. It turned out that the driveway was actually the road. For me the analogy is the story of the city mouse being asked to live like a country mouse. I have lived in a big city for most of my adult life and therefore this town is a major adjustment for me. Peter is a very resourceful person and together we are finding a way to make this work. When I bid on this house at the auction, I was motivated to do this for two reasons. The first was obviously I wanted to support Mattie's preschool (a school that was super supportive of us through Mattie's cancer battle) and second, I wanted Peter to have a chance to go back to the Cape, to a place he always told me so much about.

Along our journey, I snapped several pictures. This is a picture taken from the NJ Turnpike of New York City. As we approached NYC, I emailed my lifetime friend, Karen, and told her we were going to honk as our way of saying hello to her.

I can't remember the last time I crossed over the George Washington Bridge. I must have been a child when I did. Peter asked me which bridge I wanted to traverse, George or Martha Washington, and I picked George, so that I could have a better view.

As we entered Massachusetts, we passed several cranberry bogs. They were beautiful and beginning to turn their lovely red color.

This is one of the streets near the house where we are staying in Truro. I wanted you to see this to get a feeling for the terrain!

This is the house we are staying in. It is very rustic looking both inside and outside. The one captivating part of the property is the backyard and its view!

From the backyard we can see the Cape Cod Bay, which was a glorious sight after nine hours of driving in the car.

I end tonight's posting with a view of a spectacular sunset over Cape Cod Bay. When we step out of the house at night, it is pitch black and you can see stars for as far as the eye can see. Living in the city, I do not think I have ever heard such silence, but if you want to connect with nature, Truro is the place to be. 

Thursday, October 6, 2011

Thursday, October 6, 2011

Tonight's picture was taken in March of 2005. What this picture was saying was..... MOM PLEASE STOP with the picture taking!!! I HAVE HAD ENOUGH!!!! Mattie wasn't always a fan of pictures, but as you know this did not stop me. Fortunately I captured him during the various developmental stages and during the day to day antics of his life. I can't imagine where Peter and I would be now without having pictures?!

Quote of the day: Grief is a healthy emotion, and it's healthy to embrace it. By accepting loss, we clarify our values and the meaning of our lives. ~ DEAN KOONTZ

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

I started my day by going into Mattie's room. As I entered it, I noticed his Lightning McQueen toy car was in the middle of the floor. It wasn't like that last night and neither one of us moved it. So the question becomes, HOW did this toy car miraculously turn up in the middle of the room, when it was stored safely in a bin across the room? My only conclusion, as odd as this might sound, is that Mattie was sending me a message. Mattie LOVED Lightning McQueen and if a message was going to be sent to me, I would imagine Lightning McQueen would be Mattie's medium of choice!

My main task of the morning was to put Patches, our Calico cat, in her carrying case and to bring her to the vet for boarding. Anyone who owns a cat, and an anxious one at that, understands that capturing one's cat and getting her into a box is a grand feat. The last time I did this, Patches gave me an extremely hard time. So today I had a strategy, YES I need a strategy for my cat! I pretended that I was going about my usual daily activities at home. So when I swooped down to lift her up, she had no idea what was happening. Thankfully it was a smooth transition for her, though she was less than pleased with me, as she was howling all the way to the vet's. However, as soon as I walked into the vet's office, it was NOT I who received a greeting and a HELLO, but guess who did?! They all oh and ah over Patches, which I am happy about. Our vet and her staff love Patches, and they got to know her very well when Mattie was battling cancer. She lived at the vet for over a year, and though that might sound harsh, it was the best (though costly) place for her. During that time, she had to have radiation on her thyroid because of one of her illnesses, and they also began treating her for renal failure. So Patches is a kitty who needs patience, kindness, and medical care.

It was a day of chores, but between chores, I met up with Ann and we walked four miles together. It was a glorious weather day here, and our walking accomplished two things, we exercised, but we also had a chance to talk about a whole host of things. Along our journey together, we also ran into Lana, one of Mattie's preschool teachers. Mattie and Lana got along splendidly and it is funny whenever I see one of Mattie's preschool teachers, I am instantly transported back to 2005 or 2006. Years which at the time I thought were stressful, but looking back, I realize they were precious and priceless. Mattie came into his own at Resurrection Children's Center, he developed so many strengths, self confidence, and friends. It was two empowering years that will always remain with me.

This evening, I am packing up to head to Cape Cod for five days. I have set up the blog for the next five days, and I am happy to report that Peter figured out a way for me to access the Internet through the blackberry. Apparently you can tether the blackberry to a computer and the computer will use the blackberry's data plan. I am not the technical one in the family, but I am thrilled Peter figured it out. So the next blog posting will be coming to you from Massachusetts!

Wednesday, October 5, 2011

Wednesday, October 5, 2011

Tonight's picture was taken in March of 2005. I LOVE this picture. If I could title it, the title would be.... A Boy and his Power Tools! Mattie got these kid version Home Depot tools as a gift, and absolutely loved them. He went around the house using them on practically everything! But what you should also know was Mattie had his own tool box, filled with real tools. Our neighbors got this tool box for Mattie because they could see how handy he was and that he loved assisting Peter. We still have Mattie's tools and toolbox, and many of Mattie's tools actually had his name on it. He made sure of it, so that his tools wouldn't get mixed up with his father's!

Quote of the day: I don't mind dying, I just don't want to be there when it happens. ~ Woody Allen

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


I had the opportunity to have lunch with my friend Alison today. As many of my faithful blog readers know, Alison was our Team Mattie fund coordinator and helped us in extraordinary ways while Mattie was battling cancer. Peter and I will never forget anyone who contributed to Mattie's fund while he was so ill, and we are grateful to the excellent way Alison managed this money. It is thanks to all these contributions and Alison's skills, that our Foundation was able to be started and is fiscally sound.

Alison and I discussed some Foundation activities and my goals. While talking to her she highlighted some issues that were bothering me and one of her comments I absolutely loved. She reminded me that I am only ONE person. Though some times I act like I am five people all wrapped up into one, but I have to be kinder or more realistic with myself. Some times hearing that is a good thing, and when she analyzed all that I do for the Foundation, I suppose I should be proud of what we have accomplished in less than TWO years. Reality checks are important as is positive feedback!

However, for me it was a bittersweet day. Two years ago today, Ann's father (Sully) died. You may be asking yourself what does this have to do with me or with Mattie. Well in many ways Sully's death connects me to Mattie's death. Mattie died on September 8 of 2009, and soon after Mattie's death, it was  evident that Ann's father's health was degrading significantly and he was dying. I have to admit after Mattie died I was absolutely LOST. I was emotionally numb, and yet I was SO used to caring for someone intensely for 24 hours a day, seven days a week, that this energy needed to go somewhere. I turned my adrenaline over to Sully. After all, Ann was managing her household and three children, and though she spent an inordinate amount of time, day and night, with her parents, she couldn't be there 24 hours a day. But I could! Some of you may recall that for several weeks, Peter and I moved into Ann's house after Mattie died. Peter spent the time with Ann helping at home, and I spent my time with Sully and Mary (Ann's mom). It was during this intense time, Mary and I became instant friends and bonded over the loss of our sons.

I am sure from an outsider's perspective at the time, it seemed hard to understand how I could just lose Mattie to cancer, and then turn around and sit vigil, nurse someone else, and help that person die. I can't explain it, but I do know that Sully gave me a purpose and a focus. In many ways, I will always be grateful that Ann allowed me into her family's life then, because I am honestly not sure what my days would have looked like without caring for Sully right after Mattie's death. I was very traumatized, so much so, that I could easily stay up for 24 hours straight with Sully, without needing sleep. My body was conditioned to functioning more like a machine than a person. But I also needed to be needed, and to be caring for someone. Intensely providing care made me feel alive and when I stopped moving, life seemed meaningless.

Though I did not see Ann today, I did stop by her house and planted a mum in her front yard. As I told her, the garden I have planted for her is really a memorial garden in many ways. I have plants in her flower beds that signify her brother's death, Mattie's death, and now her father's. Cancer and death have bonded Ann and I together. Most friendships start over perhaps commonalities, in school, or at work. Our connection is a bit different, and in a way it is a spiritual connection of sorts. As I say to her often, when Mattie died, he left a part of himself in her, and there are times she will be doing or saying something, and I just watch her, because it seems SO Mattie-like. It makes me pause.

I do not do this often, but I did go back to the blog, and read excerpts of my thoughts from when Sully died. I copied and pasted them below for you to read if this interests you. What fascinates me is that despite being traumatized and not sleeping, and having helped two people die in one month's time, my writing back then was clear, understandable, and captured powerful emotions.
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OCTOBER 5, 2009 (written before Ann's dad died)

Today however was not a good day for Ann’s dad. He is practically in a catatonic state, yet is sensitive to noise and all visitors on some level. In a way, he reminds me of where Mattie was toward the end of his struggle. I am all too familiar with the no talking, no noise policy. Within one month’s time, Ann, Peter, and I have seen more than enough death for a lifetime, yet as we sit during these final hours, it is hard not to relive and reflect upon Mattie’s short life and death. I think losing a child is by far one of the worst losses you can ask a person to go through, yet, I also know that saying good-bye to someone meaningful in your life is not easy regardless of the age. The only comfort I have in watching Sully die is knowing that he lived a full, productive, and happy life. Not that it makes losing him any easier, but somehow we as human beings like to rationalize that it is okay for an older person to die. That this follows the natural order of life. True I suppose, but I know whether a death is expected or it is sudden, there is still an overwhelming amount of sorrow, anger, sadness, and emptiness that results.

I certainly have experienced many relatives in my lifetime die, and I have gone to funerals. But until Mattie, I had never helped a person die, and to actually be with a person when one’s last breath was taken. This puts death in a whole new light and context. Death isn’t pretty, it is not like it is on TV, where this is a melodramatic last breath, and the pain and suffering is over within seconds. On the contrary, death can be quite the opposite and it also doesn’t follow a script or plan. You never know what each minute holds. I distinctly remember someone at Georgetown Hospital saying to me that death is natural, but watching death happen is anything but natural. This is actually a brilliant comment, which at the time meant nothing to me until I watched Mattie’s five-hour death march. Mattie’s death had sights and sounds to it that I will never forget. Ann said she heard her dad make this “death rattle” sound today, and so far I haven’t heard it, but believe me when I do, I will be able to identify it in seconds. So in essence Mattie has given me a medical education without ever having to go to medical school. His strength and courage live within me. Having helped Mattie live and battle with cancer has taught me a lot about life, priorities, and helping friends.

OCTOBER 6, 2009

Today marks Mattie's one month anniversary of his death. I can't believe that four weeks have passed by and yet, for Peter and I it seems like just yesterday. We live with a constant ache, a constant level of fatigue, and sadness. The emotions that we live with each day are overwhelming and at the same time indescribable.

Last night at 9pm, Ann's father died. Unlike Mattie, Sully died a peaceful death. It fact his heart rate just continued to become slower and slower, until it eventually just stopped beating. I still can't get over the huge difference between Sully's death and Mattie's. However, both were similar to the extent that there was no dialogue or two way good-byes. Not being able to have a two way conversation toward the end, I find unsettling, but I guess you just have to have faith that your loved one is hearing you as you express your final thoughts and feelings.

As I told Ann last night, being able to help her the past two weeks was a privilege. I feel very honored to be able to be with her through this intense process, and to be able to sit with her while her dad was dying. In a way, watching a loved one die is a private and intimate experience, and yet Ann allowed me to participate in it, and to support her. Not unlike how she supported me for over a year. It really intrigues me to find out just how many people have had the experience of watching the death process unfold with a loved one. My guess is not many people experience death in such an intense manner, but maybe I am wrong. Needless to say, I have seen two people die before my eyes in just less than a month. Certainly that is not easy for me, and yet, after helping Mattie, not much frazzles me. Not much scares me, and most certainly no medical personnel is going to intimidate me. Georgetown Hospital taught me well. I learned to question and advocate everything, and in the end I found Mattie's doctors respected me and I felt as if I was included as a valuable part of his team. However, sitting with Ann over the past two weeks has enabled us to learn more about each other, and as I always say, under times of crisis, you really learn what a person is made of. Experiencing such life and death situations, bonds you to a person instantly, like nothing else I have ever experienced. I am not saying I am looking for these near death experiences in my life, but Mattie and Sully's death are now a part of my life, and as such I have the need to make sense out of them. There has to be a reason I am going through this, I can't imagine why, but I am hoping that the reasoning presents itself. In the mean time, I just keep doing what I can to feel safe and somewhat able to cope.

As Ann heads to Boston tomorrow to plan her father's funeral, a part of me feels almost guilty or incomplete, because I will not be able to participate on this final journey with her. Naturally it makes perfect sense that I can not go to Boston right now, since Mattie's funeral is this Saturday, but I have become invested in the caring of Sully, and it seems like not attending the funeral doesn't put closure to our time together.

I had the opportunity to spend some time with Mary (Ann's mom) today. Mary, as is to be expected, is out of sorts today. As she let me know, she feels "empty." She looked at me as she was telling me this, and I told her I could completely understand how she feels. Mary is not crying, like myself, but you can tell she is profoundly sad. Sad for the loss of her husband and the loss of her son. Mary asked me today how I felt after Mattie died when I had to come back to our home. I thought that was an insightful question, especially as she sits in the room that her husband died in.

Tuesday, October 4, 2011

Tuesday, October 4, 2011 -- Mattie died 108 weeks ago today.

 

Tonight's picture was taken in May of 2005 on our deck. Mattie's frog sandbox was one of his favorite places to play in outside. What you can't see however was the PILE of sandtoys near me in the picture that he first had to dump out of the sandbox so he could step into it. Mattie had hotwheels cars in his sandbox, all sorts of shovels, sand molds, pails, and you name it! The creativity of his play was endless. Also notice that in the picture he has a smiley face sticker on his shirt, but notice the way he put it on himself. He wanted to be able to look down on his shirt and see the smile looking right at him. Rather clever if you ask me!

 

Quote of the day: Sorrow you can hold, however desolating, if nobody speaks to you. If they speak, you break down. ~ Bede Jarrett

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


We have 20 more days to vote in the Amazing Nurse Contest, and I want to THANK my readers for continuing to vote for Tricia each day. Your votes are SO important  and necessary to secure her as one of the five Johnson & Johnson finalists. As always I appreciate the fact that you continue to read the blog and for taking the time to vote for Tricia, Mattie's Amazing Nurse.

I had a hard time falling asleep last night and then arose at 6am. So it was not a good start to the day for me. On Tuesdays I take a zumba class, and I was tempted not to go, but I found my way to the class and jumped around for an hour. After jumping around I felt even more tired and yet at the same time a bit lost.

Because today was the first sunny day we had in days, it was lovely to be outside. So I went over to Ann's house to spend time in her garden. Some of you will recall I planted Ann's flower beds this spring, and I must admit that over the past several months, I haven't devoted my time and attention to them as I have in the past. So I honestly wasn't sure what I was going to find growing and thriving. However, I was thrilled to see that all the plants have done very well this summer and have really grown. With all the rain we have had, I am not surprised, but it is always wonderful to see something you planted living, growing, and continuing to provide beauty.

At this point in the day, I could have just gone home, but I had decided on Monday night to visit Mary (Ann's mother) for Tuesday's dinner, so it made no sense for me to come home to DC, just to drive back to VA. While at Ann's house, my friend Tina text messaged me. Tina is one of Ann's neighbors, and asked me if I wanted to go to lunch with her. When she messaged me I wasn't sure how I was feeling, but then we went for pizza. Hitting me with carbohydrates is like music to my ears. It is the next best thing to chocolate, and that is saying a lot.

In order for Peter to reclaim his health after Mattie cancer battle, he has had to watch his carbohydrate intake. So naturally I am trying to support this and therefore together we never have pizza. So as I told Tina today, having pizza is a real treat for me and we had a good time eating and chatting about our upcoming weekend adventures.

In honor of each Tuesday, the day that Mattie died, Mattie's oncologist and our friend, writes to us each week. Today Kristen wrote, "Finally, Mattie has sent us his sunshine!  Thinking of you this Tuesday and every day."

Monday, October 3, 2011

Monday, October 3, 2011

Tonight's picture was taken in May of 2005. We took Mattie to the DC Aquatic Gardens, a place he loved a lot because of the wonderful water lilies, lotus flowers, birds, turtles, and occasionally a snake or two. During one of our visits, we even saw a beaver swimming about and working on a dam. Mattie was a nature lover at heart, and in fact, when he was a baby I learned quickly, that he preferred being outside (regardless of the temperature) and simply seemed calmer and more at peace when in the fresh air and not confined. Mattie was born a free spirit and I must admit I learned a great deal from nurturing him in seven years, and in the process grew to love being outdoors, walking around, and exploring nature.

Quote of the day: There is neither happiness nor misery in the world; there is only the comparison of one state to another, nothing more. He who has felt the deepest grief is best able to experience supreme happiness. We must have felt what it is to die, that we may appreciate the enjoyments of life. ~ Alexandre Dumas

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


I began my day with an email from Helen, Ann's cousin and my friend, Colleen. Both of my friends live in Massachusetts and were happy to hear of our travels up North this weekend. They sent me everything from weather reports to places to see and to dine at on Cape Cod!

I lived in Boston for only three years, yet in that short time I met some wonderful friends. In fact my friends, Jen, Colleen, and Angie are regular blog readers. The four of us survived graduate school together, which was no easy undertaking. Getting a master's degree (Angie got her doctorate) in biology at Boston College was challenging because in order to graduate we had to do original research and the research had to show significant findings. NO easy task!!! Which is why it took most students a great deal of time and commitment to graduate. I have experienced and seen enough abuses in graduate schools, to make you question the whole higher education system. My underlying joke while trying to survive each process was...... if I ever graduate I am going on Oprah. Well that never happened, but these difficult educational experiences created a bond among us, that exists whether we see each other often or not.

As I was getting myself ready to go out and walk this morning, I happened to look in Mattie's room, and right on Mattie's bed was this sight! Patches, our Calico cat, jumped on Mattie's bed, knocked over his National's baseball stuffed animal dog, and settled right in toward his pillows. To me this was a precious sight and illustrated to me that even Patches misses Mattie and knows that he is missing.


I had a walking companion today. Ann joined me, and as we walked close to three miles we caught up on life with each other. One of the things we talked about which was on my mind is the perception others have of me. It has come to my attention that some times people do not feel comfortable talking to me about their children, their lives, and their vacations in fear that this will hurt me or sadden me further. Or even worse that I will not think this information is important to know about. When friends tell me this, I try to step back and let them know that hearing about their normal and healthy lives is some times hard. Yet if we do not share each other's lives then nothing will connect us or bond us together. I have absorbed this information for a while now, and decided to simply ask Ann for her perspective today. I understand people do not want to hurt me, and I appreciate that, but in all reality it is hard to bring upon further sadness in my life. I do a job fine all by myself without help. But as I said to Ann, what is sad and does bring upon further loss is the simple fact that losing Mattie impacted our identity and therefore our social networks. Without children in your life, your circle dissipates drastically overnight. I try to put myself in the position of others, and I know it must be awkward to be a parent and talk with someone who has lost their only child to cancer.

This afternoon, Ann and I went to a fundraiser lunch hosted by her friend whose son has been diagnosed with Crohn's Disease. Normally, the immune system helps protect the body, but with Crohn's disease the immune system can't tell the difference between normal body tissue and foreign substances. The result is an overactive immune response that leads to chronic inflammation. This is called an autoimmune disorder. People with Crohn's disease have ongoing (chronic) inflammation of the gastrointestinal tract. Crohn's disease may occur in any area of the digestive tract. There can be healthy patches of tissue between diseased areas. The inflammation causes the intestinal wall to become thick.

Though I haven't experienced Crohn's Disease, I certainly know what havoc such a serious illness can cause on a child and his family. During the lunch, I had the opportunity to meet other moms who were there to support the mom hosting the event, and I always find it interesting to meet and learn about people. That is one thing that cancer hasn't changed!

Sunday, October 2, 2011

Sunday, October 2, 2011

Tonight's picture was taken in May of 2005. As you can see our living room was filled with train tracks and a whole host of other things you can't see. Mattie LOVED trains, especially Thomas trains, and what you may not be able to see on the TV behind Mattie was an episode of Thomas the Tank engine playing. I learned early on that Mattie was NOT a couch potato, and frankly never really sat still to watch TV or a video. He was a multitasker and if he was watching or listening to a show about trains, then he most certainly wanted to be building and playing with trains. These tracks and all of Mattie's Thomas trains are still in his bedroom today. These were toys he played with daily and meant a lot to him, so clearly parting with them doesn't seem possible.

Quote of the day: We have to believe that even the briefest of human connections can heal. Otherwise, life is unbearable. ~ Agate Nesaule

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

Peter went for a walk on Roosevelt Island this morning. I give him credit since it was cool, damp, and raining today. My three favorites! Along Peter's journey he saw a wonderful Great Blue Heron and snapped a picture for me.

Peter also saw a wonderful Roosevelt Island Buck. Though I did not see this deer in person, I can safely say I am no longer in Los Angeles, since this is DEFINITELY NOT the LA Cappuccinos with their black tails, sleek bodies, and very large ears! Our deer are larger, with reddish brown fur, and have white tails!

While I was in Los Angeles, I received an email from a high school student enrolled in an International Baccalaureate (IB) degree program. An IB program professes to produce “global citizens” and is considered to be more “practical and application-oriented.” Moreover, the focus of the IB pedagogy is on ‘how to learn’ rather than ‘what to learn.’ One of this student's requirements is to investigate a topic of her choice and write a research paper about it. She decided to focus her research on childhood cancer and the foundations established to support children with cancer. I suspect she is interested in cancer because her brother is a cancer survivor and as a sibling, she too was greatly impacted by her brother's diagnosis. This young lady learned about the Mattie Miracle Cancer Foundation through the recent article that was published in the Georgetown University Hospital's Pediatrics Magazine.

We chatted with her for about 90 minutes and naturally we will have future follow ups with her. Nonetheless, as Peter and I sit side by side and talk about the Foundation, it is obvious that we come from two different disciplines, and yet together, these disciplines blend to make us a more solid package. Peter gives the analogy all the time of our different leadership styles. Apparently, I am like Bones (the medical doctor on the original Star Trek series) and he is like Captain Kirk. Those of you old enough to remember the original Star Trek may recall that Bones was about feelings and emotions and Captain Kirk was about logic, reasoning, and practicality. We tried this analogy today with our young friend (who asked about our leadership styles!), but we quickly realized there was a generation gap with this great analogy!

This evening, I began researching Truro, MA. Truro is on Cape Cod, and sits very far down the arm of the Cape, almost close to Provincetown. In March of this year, I attended Mattie's preschool auction. One of the items I bid on and won, was a five day stay at a house in Truro. Certainly when I was competing for this item it sounded lovely. The Cape is beautiful, the leaves will be turning, and so forth. However, now as I sit in my home freezing from today's weather, the notion of going further North is not appealing. So I am trying to get my bearings to prepare for our vacation away. We leave this coming Friday, and I have already learned that the house we are staying in has NO Internet connectivity. In fact, most of the town of Truro, has no wifi access. I found one location that does, but I honestly do not know how I feel about dragging my computer to this place each day to write the blog. So at the moment, I am in a quandary. I joked with Peter over this, because I have been on cruises, in remote parts of Alaska, and STILL had access to the Internet.

Certainly I could forgo not writing the blog for five days. I assume my readers would understand and would return to reading once I came home. However, I have written this blog for THREE years, each and every day regardless of the circumstances, and as some of you know, while living in the PICU, my circumstances were dire. The blog, since Mattie's death, has become my baby. I nurture it each day with words, and I share Mattie's memory with you each day. So not writing the blog somehow signifies something to me, perhaps the abandonment of Mattie's memory. I am not sure, but I have a couple of days to come to terms with a decision.

Saturday, October 1, 2011

Saturday, October 1, 2011

Tonight's picture was taken in May of 2005. As we were touring around the garden we were visiting, Mattie spotted a fountain filled with plants and fish. He climbed right on top of the fountain's ledge and began pointing out all the things he was seeing. This was NOT an unusual occurrence for Mattie. Mattie was the master of observation, was curious, and had a way of inspiring you to be curious too.

Quote of the day: One cannot be deeply responsive to the world without being saddened very often. ~ Erich Fromm


As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

Today's weather was a thorough shock to the system. On Friday it was in the 70's and today it was in the 50's and raining. Last year, I went to an outdoor fair called Art on the Avenue in Del Ray, VA and enjoyed it very much. It is a wonderful arts and crafts fair that is fun to walk and browse through especially when it is a lovely weather day. I was looking forward to going to Art on the Avenue today and introducing Peter to it, but the weather was awful. Despite the mizzling rain, people showed up to the fair by the boat loads and really did not seem to be bothered by the weather. I on the other hand looked like I was ready for the Arctic. I had a jacket, scarf, and gloves on, and even with all those things, after an hour, I was frozen solid. So we did not stay long.

I have developed a head cold this week, so I came home and rested while Peter went for a walk on Roosevelt Island. From his journey, he brought me back three leaves. This is something Mattie would have done on a Fall walk, and so when Peter presented me this gift, I knew what the underlying intention was. Also three is a special number to us, because Mattie collected things in three's.... there would be one leaf for Peter, one for Mattie, and one for me.

If Mattie were alive today, he would be in the fourth grade just like the rest of his friends. It is funny how that works out. Mattie dies, our world stops, and yet for others the world continues on and children still have play dates, parents still are planning parties, and things seem to return to normalcy for others around us. Naturally that is my perception, and I do of course know that some families are still deeply affected by Mattie's death. Nonetheless, I am aware of the fact that the fourth grade parents from Mattie's school are gathering tonight for a party. A party we most likely would have gone to if Mattie were still alive. It is a very strange feeling to know such a party is occurring and we no longer fit in. Actually it is a sobering reality, which brings me back to the point that losing a child is a life altering reality. A reality which I can try to keep describing, but not one you can possibly understand if you aren't living it. It is hard enough to lose your child, but when you lose the things and people that used to occupy your world, it makes daily existence extremely challenging.  

Friday, September 30, 2011

Friday, September 30, 2011

Tonight's picture was taken in May of 2005. On one of our weekend excursions, Mattie and Peter were looking through and collecting rocks along the shore line. Using the small ones, Peter was teaching Mattie how to skip a stone in the water. I must admit prior to meeting Peter, I never heard this term, much less ever saw someone skip a stone. Mattie was fascinated with stone skipping in the water, and wanted desperately to learn how to throw a stone and get it to skip three or four times on the water's surface like Peter.

Quote of the day: Grief can awaken us to new values and new and deeper appreciations. Grief can cause us to reprioritize things in our lives, to recognize what's really important and put it first. Grief can heighten our gratitude as we cease taking the gifts life bestows on us for granted. Grief can give us the wisdom of being with death. Grief can make death the companion on our left who guides us and gives us advice. None of this growth makes the loss good and worthwhile, but it is the good that comes out of the bad. ~ Roger Bertschausen

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

One of the family's at Georgetown University Hospital, who we got to know while Mattie was battling cancer, let us know today that their daughter has a potential recurrence of her cancer. This young lady has been fighting this horrible disease for a while, and she and her family live on a constant roller coaster of emotions. When I learned about this news today I was sickened. This lovely girl and Mattie battled cancer at the same time, and during that time, I had the opportunity to get to know her parents. Her parents were extremely supportive of us and were always in amazement with how we kept it together despite Mattie's intensive surgeries and chemotherapies. Certainly Mattie has been gone from our lives for two years, but I will always remember what Mattie endured treatment wise. His body was exposed to amazing levels of toxicity, and I have no doubt his regimens would have been overwhelming and down right depressing to an adult counterpart. No I am not a medical doctor, but unlike most medical doctors, I have lived cancer 24 hours a day, seven days a week, for 15 months, and saw what it did to my son, my life, my marriage, and my future. This personal insight and day to day logging of the process from my perspective gives me a certain level of knowledge that I am sorry... no medical doctor has. For this knowledge can't be captured in a textbook, a journal article, or even through residencies and rounds.

When I learned of this young lady's potential battle with cancer again, it made me feel ill. The thought is simply overwhelming for her and for her family. I can't even begin to highlight the level of fear, of hopelessness, and of the sheer lack of control they all must feel. Living with childhood cancer almost feels like living with a ticking time bomb inside your body, and unfortunately NO one knows when or if it will go off again. Childhood cancer quickly illustrates that our fate is not in our own hands and also shows the vulnerability of the medical profession. Because modern medicine can't solve and CURE childhood cancer. We are conditioned as a westernized society to believe that seeing a doctor will make us feel better and that with medicine our lives will improve. The disheartening reality which families of children with cancer learn is it takes much more than medicine to treat cancer. It is my hope that you will pause tonight and think about this teenager and her family and wish them strength.

Though I went about my day, this news weighed heavily on my mind. I did spend part of the day with Mary and Ann, but then needed to go for a walk to clear my head. I walked over three miles, but it did not do anything for me. But I was determined to enjoy our last day of warm weather before we get hit with Fall weather tomorrow.

I would like to end tonight's posting with a message I received today from Network for Good (our electronic newsletter and walk management site provider). If this message compels you, I urge you to sign the petition which can be found by clicking through the blue link below.
===================================================================

A group of Senators wants to reduce tax deductions on charitable donations to raise federal revenues.

Tell your Senators and President Obama that you don't want to see charities hurt by this terrible idea.

Making it harder to financially support charitable organizations would severely impact thousands of charities and the Americans that rely on them.

From dispensing nutritious food to poor families to rescuing abused or abandoned animals, charities provide crucial services to those who need help most.

In times of struggle, we need to support charities and the vital work they do, not defund them.

Join Network for Good along with our friends at Care2 and the Nonprofit Technology Network (NTEN) in asking the Senate and the President not to hurt charities by reducing tax deductions on donations.

To sign the petition, go to:

http://www.thepetitionsite.com/takeaction/133/452/331/?z00m=20076595
=======================================================================

Thursday, September 29, 2011

Thursday, September 29, 2011

Tonight's picture was taken in May of 2005. Mattie was three years old and we took him to the butterfly house at Brookside Gardens in Maryland. It was a beautiful enclosed garden with butterflies flying all around. The majority of us at the exhibit were fascinated by the butterflies however, none of these creatures decided to land on us! Mattie however was the chosen one. As you can see this monarch butterfly matched Mattie's orange shirt. Mattie understood the gentle nature of butterflies and he knew he couldn't touch it. However, the sheer joy on Mattie's face let us know he was happy to be selected as a landing spot. My friend, Tanja, has commented on this picture the last time I posted it. The comment resonated with me, because she said butterflies only land on special people. I would like to believe this butterfly sensed Mattie's uniqueness and gentleness of spirit, and therefore graced him with its presence.

Quote of the day: Even his griefs are a joy long after to one that remembers all that he wrought and endured. ~ Homer 

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.
Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries

I want to thank SO many of you who are emailing to let me know you are voting for Tricia. Keep up the good work! For those of you who have posted this information to your facebook and twitter accounts, I can't thank you enough!

I went to visit Celina today. As some of you may know from the Foundation Walk, Celina is the professional who cuts my hair and owns a salon in Washington, DC. Celina and her family volunteered at the Walk this year and painted and decorated participants' nails. This was a popular activity at the walk for girls of all ages! Any case, I have known Celina for over a decade and I know she deeply feels for me over my loss of Mattie. Today, not only getting a haircut, her staff gave me a head and neck massage. I did not ask for this, but when the salon isn't busy, Celina instructs her staff to do this. As soon as they felt my neck and upper back, they all cringed. Not surprising since this is where I carry my stress, along with my head! In any case, why am I telling you this? I guess the reason is this experience today confirmed for me the importance of two things, touch and being treated with kindness. In our harried lives, where we are glued to technology, we forget about the importance of human connections. Holding hands, hugging, and simply touching a person's hand or arm for example. I have found in crisis moments and moments of intense stress, nothing helps to illustrate the bond between people like touch. All I know is this simple act of kindness today made me feel a whole lot better.

Later in the afternoon, I went to visit Mary (Ann's mom). Mary is used to seeing me on a regular basis, and being away for over two weeks, I am sure was confusing to her. She was very happy to see me and she loved the fall flowers I brought to decorate her room. While chatting with her, I was arranging flowers, and Mary was shocked to see me take two bunches of flowers and transform them into an arrangement. It is nice to have a fan! Any case, I also concluded tonight that even though Mary and I clearly are a generation or so apart, we think in a similar fashion. I attribute this to the fact that we both lost a son to cancer. Cancer has changed our perspective on life, on how we view problems in life, and on how we feel about people. However, we are careful in sharing these inner thoughts with others, because sometimes our pronouncements may seem insensitive or heartless. We are certainly neither, but maybe losing something most precious to us, helps put things into context and gives us a clarity of view like we never had before.  

I would like to end tonight's posting with a picture and then a message from my friend and colleague, Nancy.

Peter and I want to thank Bill (in yellow) and his wife, Katita (in gray) for raising $1,275 for the Make-A-Wish Foundation in Mattie’s Memory. Peter and Bill were Arthur Andersen colleagues, and though Enron destroyed that company, the spirit and the connections of those who worked there remain.



My friend and colleague Nancy wrote, "After reading the last few entries of the blog, I am left with a warm glow and peacefulness. I think you have created another profession for yourself should you ever want one: writing travel brochures. Your descriptions of events and surroundings allows the reader to experience your observations vicariously and vividly. I think that is what I take away from most blog entries, the energy, love, and commitment that Peter and you made to your charming and gifted little boy. Mattie was very smart when he picked his parents. He knew that they would take care of him in all kinds of situations and conditions. I am consistently reminded of the creativity displayed by you especially on those difficult days of intense treatment. As this is the season of reflection for the Jewish people, the blog has been a source of focus. We generally wish someone we care about L'Shanah Tovah. This means that we hope for a sweet, healthy, and happy New Year to our friends and family. I always add a peaceful year! I think I understand how some of these wishes are difficult to accept when you have lost your precious Mattie and purpose as a Mom. Vicki, you were, are, and always will be Mattie's Mom. His presence surrounds Peter and you and you continue to protect and include him in each and every day. I am looking forward to being with both of you in a few weeks where I can give you a proper hug. With love today and every day."