Tuesday, December 4, 2012

Tuesday, December 4, 2012 -- Mattie died 169 weeks ago today.

Tonight's picture was taken in December of 2008. What you can't see was right next to Mattie and Peter was a huge dog. This dog belonged to one of my students and she thought Mattie would love to spend the afternoon with Jacks. She was correct. So in essence Mattie and Jacks had a race with each other. If you look closely you can see Mattie smiling! Which wasn't an easy accomplishment since as Mattie's treatment continued on the impact on his mood was significant.




Quote of the day: Here’s what I know: death abducts the dying, but grief steals from those left behind. ~ Katherine Owen


Tonight I went on the Internet to look up the test I am taking tomorrow. Though I am VERY familiar with the test, I was curious to see how it was described. In one of the descriptions it says that the test is NOT painful! I literally laughed out loud with that statement! To me it seemed as if I was reading a some sort of promotional material put out by the manufacturer of the test! Because anyone in their right mind has to think this test is painful! In fact, I would advocate for this test to be given with sedation.

Having been exposed to the health care system in such a significant way with Mattie's cancer battle, I realize there is just SO much that needs an overhaul and that must be changed. I am continually perplexed with the level of insensitivity that doctors and radiology techs have for patients undergoing procedures. The doctors prescribe the tests but they really do not take seriously the fears that their patients express. I saw this happen time and time again with Mattie and his first oncologist. Actually Mattie's first oncologist gave me very rich material that we use often when we are asked to educate health care professionals about our experience. Some of the things this doctor said to us were so off base and insulting, that they seem too far fetched to be real. But unfortunately they were VERY real, and my mind has trapped each and every one of his insensitive comments.

Recently I was talking to a medical doctor at the palliative care seminar we attended and I told her that medical students should have to experience exactly what their patients do. From living in a hospital room, to IVs, and even procedures. Chances are real personal insights would rapidly change the scientific coolness that they embrace and take pride in!

This afternoon, I went to my friend Mary's 84th birthday luncheon. I met Mary in 2008, at her 80th birthday party. Now four years later, I can safely say that I have spent the last five birthdays with Mary. Though Mary was unable to speak, it was very evident that she appreciated the party, those in attendance, and the beautiful flowers everyone brought to her.





 

Monday, December 3, 2012

Monday, December 3, 2012

Tonight's picture was taken in December of 2008, our last Christmas with Mattie. Mattie spent Christmas at home away from the Hospital, and not unlike Thanksgiving, it wasn't a happy holiday. I typically feature a photo of Mattie each night, but tonight I wanted to post this so you could see how Mattie decorated his space. After Mattie's limb salvaging surgeries, he spent a great deal of time sitting and scooting around on the floor. It was how Mattie compensated for the fact that he couldn't walk. Mattie decided to claim a part of the living room floor and set up his Christmas train. In years past that train always went around our Christmas Tree. But in 2008, running between the hospital and home, it was impossible and unsafe to set up a real tree. That didn't stop Mattie! If there was no tree, then Mattie was going to improvise. Around the train was a host of things from Legos, Wall-E, toy cars, to a poinsettia. This set up grew even bigger over time. When Mattie died in September of 2009, with him also died Christmas in our hearts. We no longer set up a tree, put up decorations, or in essence celebrate the holiday. Nonetheless, on occasion when I go into our walk-in closet to get something, Mattie's train stares at me in the face. I remember how much Mattie loved that train, the Christmas music the train played, and the fake smoke that came out of its stack. It is hard to know that other families are decorating for Christmas now and headed to share their traditions with each other. I am certainly happy for them and yet sad for us all at the same time.  


Quote of the day: Though I knew in my mind that others had felt such loss, this loss was mine, and I felt that no one would ever understand it, and to try to explain the loneliness and pain I felt would be futile. ~ Linda Hawley


My day began bright and early. My doctor wasn't working in her DC location today, she was instead at her Rockville, MD office site. Since she was accommodating me around her schedule, I was very flexible, and took whatever time she gave me. She wanted to meet at 9am, which isn't a problem per se, unless you are aware of the horrible traffic in the DC area before 9am. It took me over an hour to get to her office this morning, and that certainly did not help my stress level.

This doctor has been following my case since February. It helps to work with someone who knows my history, which is why I wasn't rushing to the ER this weekend, unless I assessed a crisis. She examined me and is sending me for an internal sonogram on Wednesday. If you are unfamiliar with an internal sonogram, consider yourself very fortunate. To me such an assessment could be used as a form of torture! Why such a procedure is done without sedation is beyond me, and I can't believe I am the only woman to feel this way. Any case, more definitive information will be obtained on Wednesday. But when she mentioned this test today, I almost jumped off the table. I first experienced this love of a test in February of this year. It was so horrific, that the whole sensation remains within my mind. It is my hope that after Wednesday, I will never be prescribed such a test again.

However, this physician and I are on the same page. We both believe that stress and grief exacerbate my health care issues. Regulating my stress levels now is not as simple as it might have been prior to Mattie getting cancer. In so many ways, it is as if Mattie's cancer has changed how I am hard wired. The littlest thing can make me jumpy, anxious, and stressed out. Things that probably other people would be able to put into context. So I am aware of these differences within myself.  

After my appointment, I drove back home. It was an incredible weather day in DC. Close to 70 degrees in December! Totally unheard of. So I text messaged Peter and asked him if he wanted to meet by his office for lunch. I needed to eat and try to de-stress before coming home and doing more Foundation work. We met and ate lunch outside! It was a bright spot to the day.

For the remainder of the day, I was working on our Foundation mass mailing. I had a helper, Patches. Well maybe she wasn't exactly helping, but she helped herself into the big box that stored our mailing envelopes. Got to love a cat!



 

Sunday, December 2, 2012

Sunday, December 2, 2012

Tonight's picture was taken in December of 2008. Mattie was home recovering from his second limb salvaging surgery. I took this picture because to me it screamed out HOPE! Mattie had three out of four limbs operated on and therefore he had a hard time doing anything independently like walking, dressing, feeding, and toileting. This was very frustrating for a once capable six year old. In addition to all of Mattie's disabilities, there was great fear associated with trying to walk independently, not to mention pain. Last night I posted a photo of Mattie playing the piano. Tonight's photo was next in the sequence. Once Mattie finished playing on the piano, he actually hobbled his way from the piano to the staircase. To me this photo spoke to Mattie's courage and his desire to want to walk again. I had no idea when this photo was taken that Mattie would never get a chance to rehabilitate.


Quote of the day: Remembering. Forgetting. I'm not sure which is worse. ~ Kelley Armstrong


Peter and I have had a challenging weekend. We had a great deal of Foundation work to do to prepare for our December mass mailing. However, the issue at hand was my physical decline. I am fortunate to some extent that I have access to several of my doctors by email. So last night I emailed my urologist. When she heard my symptoms, she instructed me to contact the oncologist who is following my case since February. I wasn't expecting that response, so naturally this made me very upset and only compounded my stress. Though it is Sunday, I worked hard at getting an appointment to see one of my doctors tomorrow morning.

Moments like this make us reflect on all the times we waited on pins and needles with Mattie. What would his scans show? Was the chemotherapy working? Has the cancer spread to his lungs? Would Mattie's pain ever dissipate? Would his appetite ever come back? All a lot of what ifs, for 15 straight months during Mattie's battle! A great deal of stress and anxiety were wrapped into each of these 'what if' moments! The stress and the aftermath of it remain within me, so much so that I have noticed when I am now asked to face things I perceive as stressful, a whole chain reaction unfolds.

So now that I have been told I need to see my oncologist again this week, I have a hard time separating this news from the news that hit us with Mattie. I  have no doubt that the stress of not knowing what is going on with my health further compounds my headaches. I am signing off for tonight and hope that tomorrow provides more answers rather than more questions.
 

Saturday, December 1, 2012

Saturday, December 1, 2012

Tonight's picture was taken in December of 2008. Mattie was home between treatments. As you can see, his left arm was wrapped up in a cast from his second limb salvaging surgery. In addition, his right leg was also healing from a limb salvaging surgery. Yet Mattie decided to hobble over to the piano, sit down, and peck away at the keys. Mattie wasn't playing a song per se, he was creating his own piece. It was beautiful actually and I remember it so well.





Quote of the day: What you are to do without me I cannot imagine. ~ George Bernard Shaw


For all intensive purposes, I have had this horrible headache for a week now. It is relentless and debilitating. Yet this is a busy time of year for the Foundation and I have a lot of things to do which require computer work. I continue to fight with my bladder condition and I am thrilled to be seeing my doctor on Tuesday. The poor thing will not know what will hit her next week.

Peter and I are told on occasion that Mattie's classmates still remember him, and they have integrated him into their everyday lives. We naturally absorb what we are told, but since we do not see or hear this directly, it is hard to understand this fact. After all, we are not interacting with these children anymore and unless a parent shares a story with us, there is no way we will know that Mattie's memory lingers on. However, today I received two different emails from friends about two totally different issues.

My friend Ann, sent me a message that her daughter, Abbie (who was a friend of Mattie's and was in Mattie's kindergarten class) liked my Holiday centerpiece that I just designed. In fact when Abbie heard that I created this piece she told her mother that Mattie must have gotten his creativity from me. A beautiful compliment to both Mattie and me. Mattie was the king of creativity, he could think outside of the box, and could practically make anything work, run, move, and function. So I was touched by Abbie's comment, and the gift is that it was unsolicited and unexpected.

The second message I received today was from my friend, Alison. Alison wanted me to know that her son, Paul, who was a friend of Mattie's and was also in Mattie's kindergarten class, had received a text message today from a school friend. Apparently this friend was electronically circulating the picture of me with all the Foundation candy! The electronic message was NOT started by an adult. Instead it was inspired by children, children who knew Mattie and who thought that the candy drive was great! Alison sent me the message to let me know that children do remember Mattie and such memories occur within their daily existence.

Somehow hearing these two tangible examples today was very powerful. Because I can keep writing until the cows come home, but I am only one person. It is lovely to know that Mattie intimately touched the lives of so many.

Friday, November 30, 2012

Friday, November 30, 2012

Tonight's picture was taken in November of 2007. We took Mattie to Roosevelt Island and what we did not realize was Peter was taking photos of us while we were walking. Funny how we really don't appreciate these simple moments in our lives until we don't have them anymore. I can't say this LOUDLY enough and it is my hope that my readers will learn from my experiences and appreciate the little ones in your lives. Their presence is not always guaranteed.





Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


There is a great deal of truth in tonight's quote. When dealing with grief it can seem like no one else around you quite gets it, and therefore when you feel misunderstood it is easy to interpret everything and everyone around you as the enemy. It has been a challenging week for me physically, and unfortunately it isn't getting any better. In addition to my severe headaches I now have another recurrent physical issue with my bladder. So I am not in the best of moods right now.

This afternoon, I literally got into bed and watched a Hallmark Movie. It may not be of any surprise to my readers to find out that this is one of my favorite channels on TV. I love the movies because of the stories, the meaningful connections, and usually the moral messages. I must admit that Christmas is not a time of year that brings me any happiness or joy. I suspect that is true for so many others for various reasons. But trying to define this holiday for us when Mattie is no longer in our lives becomes deeply challenging. Despite not liking the holidays, I do like watching holiday movies on Hallmark. I am not sure why, but I suspect because the movies usually have characters in them who like myself are lost, confused, and try to shut out aspects of the holidays.

This evening, I watched a movie from 2010, entitled "Cancel Christmas." The title got to me immediately. The movie stars Judd Nelson, who I can't help but associate with the 1980s "brat pack" (which was a group I didn't care for at all). Nonetheless, Judd Nelson and the two young boys starring in the movie delivered a powerful message. The movie begins with the Christmas Board of Directors (not saying this is all based on reality) issuing an ultimatum to Santa and his favorite elf. The ultimatum is that in 30 days or less, Santa has to make Christmas less commercial and material, or lose it forever. Santa's test that he has to pass in order to save Christmas is to change the hearts of two privileged kids and one child living with a disability so that they all understand the true meaning of Christmas.

Interwoven within the movie was a glimpse in the lives of two families shattered apart by the death of a parent. Neither family wanted to celebrate the holidays or even knew how to connect with each other anymore. This distance and disillusionment are further compounded with the materialism of Christmas. The movie pointed out that people enjoy the holiday because of the gifts they receive. So Santa begins to change the thinking of children immediately when they visit him at the mall. Instead of asking them what they want for Christmas, he asks the children what they are getting their parents for Christmas. He then goes on to explain how special and what a good feeling it is knowing you made someone else happy and feel appreciated. One child tells Santa that he has no money to give his parents a gift. Santa then corrects the child and says that the best gifts are those that aren't bought, and suggests that the child gives the gift of cleaning for a week, doing the dishes for two weeks, or hugs for a month, etc!

I have always despised the pressure we put upon ourselves at Christmas. The need and expectations of gift giving truly needs to be re-evaluated. Which is why I think this movie touched my heart. Because at the end of the day, Santa did pass his test, and the three children in question learned that doing a good deed, listening to a friend, and giving of one's time and heart are the true gifts and meaning of Christmas. Yet we live in such a busy society where people have little to NO time for each other, and therefore this message falls on deaf ears. But at the end of the day, I am pretty sure that no one is going to remember the gift you gave them this holiday season, however, a kind deed and an unexpected offer of help and concern are gifts that are cherished for a lifetime.

Thursday, November 29, 2012

Thursday, November 29, 2012

Tonight's picture was taken in November of 2007 on Roosevelt Island. This is one of my favorite photos of Mattie, which has been enlarged and is on display in our living room. In Mattie's hand was a crinkly green hedge apple. Mattie and I loved this tree on the Island and we also loved the look of the fruit it produced. Mattie brought that hedge apple home with him that day, and we cut it in half to see what was inside. What we quickly deduced was that the fruit has a lovely citrus fragrance which we weren't expecting.


Quote of the day: The women's song was always the same, as monotonous as the beating of the waves against the beach: loss, loss. The conch offered them no enchantment. When they put their ear to it, all they heard was the echo of their mourning. ~ Carsten Jensen


One of the things I have surmised is as a family run Foundation, it is imperative for Mattie Miracle to make connections. Connections and networks I believe are the backbone of our Foundation and they are what helps it to run effectively. Today I saw how such interactions can and do make a difference.

For as long as I can remember, talking with people and getting to know them on a personal level has always been second nature to me. I don't reserve this kindness to just friends, but instead anyone who I am interacting with or will have the opportunity to work with or who is providing me with a service. I have friends who at times get annoyed with me for doing this and will say..... "there she goes again." Meaning, why stop to talk to this person, listen to this person, and try to connect?!

The reason is simple. It is not only good business practice for the Foundation to get to know our audience and those who help us, but it is also a wonderful way to live one's life. Each week when I visit Mattie Miracle's PO Box, I make it my business to say hello to one of the mail clerks. This particular clerk, Darryl, has looked out for me and our mail numerous times. In fact, he saved our mail box this May when the post office accidentally decided to cancel our mailbox account. I am not sure why Darryl has taken a liking to our cause, but needless to say, I appreciate his good will, kindness, and efficiency.

This morning, I went to the Foundation's post office (where our mail is delivered to) and began working with a different clerk, because Darryl wasn't available. As the Foundation prepares for its December mass mailing campaign, I need to verify the postage that goes on each envelope. So I brought a sample envelope in to be weighed. When she weighed it she told me that each envelope (and we have over 500!), would need close to $2 in postage. I literally was in shock, and immediately pushed back at her that this did not make any sense, considering I have experience doing this two years in a row. She was quoting me a rate that was more than double of what we paid last year. But she was adamant with me and said she did not make the rules. I was courteous, but I asked her what time Darryl would be at the post office. She told me to come back in two hours, and that is exactly what I did. I waited on line for Darryl and even made people go ahead of me just so I could get into Darryl's queue. As soon as I showed Darryl the sample filled envelope he immediately quoted me the rate of 85 cents, the approximate rate we used last year. Just like the previous two years, Darryl has agreed to work with me again this year, and will personally hand cancel each item that we are mailing to supporters. So the moral of the story is making connections with people and treating people kindly are remembered and appreciated. To some extent, not always of course, but how you treat others has a way of coming back to you. Darryl was the highlight of my day because he looks out for the Foundation and saved us money today!

Though I have been battling a migraine this week, and now an intense headache that doesn't want to go away, I took on another craft project. It gets me away from the computer! I made this holiday centerpiece out of candy canes and silk flowers. This is the finished product, the design just came to me. I like to design holiday items with candy canes, and the last two years I made candy cane trees. This year I incorporated flowers with the canes and to me it looks very festive.


 

Wednesday, November 28, 2012

Wednesday, November 28, 2012

Tonight's picture was taken in November of 2002. Mattie was seven months old and was sitting in his favorite thing... "tot wheels." Or in essence his walker. When Mattie was a baby there was a great deal of controversy over putting a child in a walker. The thinking was this would prevent the child from building the necessary muscles to learn to walk independently. It is true Mattie was a late walker, but I have no regrets over him using this walker. This walker gave Mattie freedom, control, and empowered him to move independently. All the things he loved and craved. What always amazed me was that Mattie could maneuver tot wheels around our home, near tight corners, easily and with great grace.


Quote of the day: Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim. ~  Vicki Harrison


I am slowly coming out of the fog I have been living under the past two days. Nonetheless, I still have a pervasive headache and at times it is hard to keep my eyes open. I am trying to avoid spending too much time at the computer, which is a major problem considering our Foundation's November newsletter needs to go out at the end of the week. Which means many hours in front of the computer.

Because I am still not functioning fully, I am cutting tonight's posting short again. There were many highs and lows to my day today, and certainly lows somehow further trigger reflections on the loss and pain within our lives and perhaps in the world in general. The loss of Mattie is something that we are forced to accept but as Peter says, it doesn't get any easier to cope with over time. I am beginning to see Christmas all around me, and these sights and sounds bring absolutely no joy. In fact they impact my mood in a negative way and further compound my headaches.

I am signing off in hopes that tomorrow is a better day.

 

Tuesday, November 27, 2012 -- Mattie died 168 weeks ago today.

Tonight's picture was taken in November of 2008 after Mattie's second limb salvaging surgery. Mattie was in surgery and the recovery unit that day for over 12 hours. It was a harrowing experience because he had surgery on his left arm and wrist, and right leg all in one day. This photo was taken days after his surgeries. To me this is a photo that screams out resilience. Because even though Mattie couldn't walk or barely move, he found a way to smile, was alert, and appreciated what very little he had. In so many ways he was an inspiration to us and all those who cared for him.


Quote of the day: When one person is missing the whole world seems empty. ~ Pat Schweibert

I am still not feeling well. I have a migraine that is so intense, I am unable to function, eat, and at times even sleep. I am trying to spend little to no time on my blackberry or computer. The light from these devices hurts my eyes and head. In fact, I am trying to remove all stressors from my life today in order to recover. If you have never experienced a migraine then it is hard to relate to what I am talking about. This is much worse than a bad headache. It is simply debilitating. While I was sitting on the couch today trying to rest, up popped Patches to sit with me. So I snapped a picture of her. When I was in graduate school years ago (pre-Mattie), I developed an 103 degree fever. I was hallucinating at times, but one thing I remember very clearly was that Patches was right by my side, sitting on my bed. She never left me alone. Which is how she got the nickname.... nurse Patches. Nurse Patches was on duty today as well, a true companion!
 

Monday, November 26, 2012

Monday, November 26, 2012

Tonight's picture was taken in November of 2004. Mattie was 2 years old and was with his aunt and cousins at the National Zoo. Specifically at the Children's Petting zoo. Mattie enjoyed when his cousins visited from Boston and for him this was a special connection. When Mattie was a baby, his cousins lived in Washington, DC. So in many ways they watched him grow into a toddler until they moved. When ever they reconnected with each other, it was wonderful to see them pick up right where they left off.

Quote of the day: Relationships take up energy; letting go of them, psychiatrists theorize, entails mental work. When you lose someone you were close to, you have to reassess your picture of the world and your place in it. The more your identity was wrapped up with the deceased, the more difficult the loss. ~ Meghan O'Rourke


Tonight's posting is basically non-existent because I have developed a migraine today. Therefore spending time by the computer or trying to concentrate just isn't happening. It is my hopes that tomorrow is a better day.

 

Sunday, November 25, 2012

Sunday, November 25, 2012

Tonight's picture was taken in November of 2002. Naturally there is a story behind this photo! Mattie was seven months old and he was wearing a Union College jacket. This jacket was sent to me by my favorite college professor, my immunology professor. Prof. Styles sent me a few baby gifts when he learned about Mattie's birth! I was so touched to receive these gifts from him that I had Peter snap a picture of Mattie in the jacket so that I could email it to my professor. We always joked that Mattie would one day go to Union College, the college where Peter and I met. Like so many things, this too wasn't meant to be.


Quote of the day: Healing is not a matter of technique or mechanism, it is a work of spirit. ~ Rachel Naomi Remen


Peter and I have been working from home all day. One of the things we tackled this weekend was transferring many of our outdoor plants inside for the winter. It is safe to say that our home looks more like a jungle now! This transferring of plants may sound like an easy project but it simply isn't.

Here is one of our first green friends we brought in for the winter. We have had this Christmas Cactus for years! When it first came to live with us it never bloomed at Christmas time. So I renamed it my Valentine's Day cactus, because sure enough it bloomed in February. However, now that it spends the summers outside, it blooms at Christmas time like it is supposed to!

 

The funny part about all of this is I usually do not buy my plants. Instead I inherit them as rejects from other people. Meaning that someone starts to grow a plant, it doesn't work out, and it is given to me to resuscitate it! This Pygmy Date Palm was given to me by my neighbor. In reality when she gave it to me it looked more like it should be tossed in the trash. It was practically dead. But after several years of care, look at how beautiful it is now! I have spent time cultivating it, so there is no way we are leaving it outside to die in the winter time.

This bromeliad is sitting in front of one of Mattie's colorful paintings! I like the composition somehow. This bromeliad was given to me in January of 2012. One of our Mattie supporters bought it for us at the Foundation's 5% sales day at Whole Foods!

 

In front of our living room picture window are many of our outdoor plants. Peter wheeled in our Meyer's lemon tree and many of our other plants. The beauty of the lemon tree is that it has blossoms on it and if you have never smelled a citrus tree's flowers, you are missing out on a real treat. When there are lots of blossoms going at once our living room smells like an orchard! This tree blossoms and produces incredible lemons in the summer! The tree was sent to me YEARS ago from Florida for my birthday. The tree came as a tiny sappling, now it is about my height!

 

Naturally these spider plants also have a story. When I was living in Boston and going to graduate school, I had a lovely 80 year old neighbor named Ivy Berger. Miss Berger was a former school teacher who never got married. When I moved into the building she practically adopted me. She would visit often and she got to know my mother and Peter. Ivy, like me, LOVED plants. One day she gave me an off shoot from her spider plant. So I planted it, and years later from this one off shoot, I now have three different spider plants potted. Though Ivy is no longer on this earth, her plants remain with us. These plants were outside and we brought them in for the winter. I placed them right near Mattie. For in that beautiful Italian marquetry box in this photo are Mattie's ashes.