Saturday, July 13, 2013

Saturday, July 13, 2013

Tonight's picture was taken in July of 2009. Mattie and Peter were in clinic together and next to Mattie is Brandon. Brandon was Mattie's big buddy. Brandon is a lymphoma survivor and met Mattie while they were both undergoing treatment. Mattie considered Brandon one of his closest friends. In this photo, Mattie and Brandon had a boat competition. They both created and designed a boat at the clinic art table and then they wanted to see whose boat not only floated in the sink, but whose boat could race the fastest. Brandon was a great sport and a great friend to Mattie. Happy Birthday Brandon!


Quote of the day: Once you had put the pieces back together, even though you may look intact, you were never quite the same as you'd been before the fall. ~ Jodi Picoult


Despite having a wild headache, I had the opportunity to go out today with my friend Ann. This is something we had planned to do for a while and therefore I wasn't going to stay at home and continue to feel miserable. Though I have to admit that my headache was very much a part of my life today. We visited a spa and tried a new restaurant in DC together. Something that we rarely get to do, so this was a special way to spend a Saturday for both of us. If you spend any time with either of us, you know we are both directionally challenged. Which can be a comedy show in and of itself. If you think it isn't possible to get lost from a parking garage into a hotel, I assure you with us it is more than possible! As my faithful readers know, Ann was our Team Mattie Coordinator. She coordinated daily meals for us for over a year, communicated to our care community regularly, and whatever wish or desire Mattie had she and our care community tried to fulfill it. So perhaps it is what we have experienced together as friends, but Ann and I can talk about all sorts of issues and problems. I would imagine if others sat with us, they would be shaking their heads or desperate for lighter topics and conversation. For us, such conversations are natural, normal, and perhaps in their own right therapeutic.

While I was out with Ann, Peter began sorting through some drawers in our bedroom. In one of the drawers he came across a Ziploc bag with two pieces of paper in it. The first paper was this one! This was the very first note Mattie and I wrote to the Tooth Fairy. On November 7, 2007, Mattie lost his first tooth and he made it quite clear to me that he did not want money for his tooth. He wanted an item (a hot wheels car). He asked me how the tooth fairy would know what he wanted, and my immediate response was he should leave her a note by his pillow. Mattie liked that plan and therefore with each tooth he lost, we wrote a note!

To be honest, I remember this first note above, but I did not remember putting this second tooth on an index card! Well that is until Peter showed me this!!! The story behind this tooth is actually funny. Mattie lost his second tooth on Thanksgiving Day of 2007. We were visiting Peter's parents in Boston. However, before leaving for Boston, I knew one of Mattie's teeth was loose. So we discussed his plans for the Tooth Fairy. Mattie told me that when he lost his second tooth, he wanted the fairy to bring him a necklace made out of pasta (raw pasta!). I thought that was an interesting and unique request to say the least. So before leaving for Boston, I put together a pasta necklace and took it with me. When Mattie lost his tooth in Boston, we did write a note to the fairy, and just like with the first tooth, we put the note by Mattie's pillow. Of course Mattie was concerned that the fairy wouldn't find him in Boston. But like ALL good fairies, they do not disappoint! Mattie loved that pasta necklace and kept it for the longest time.

I have to say that two unusual things happened to us today. Both things I feel are messages from Mattie! This afternoon while Peter was working out in our garden, he had a special visit from a Pipevine Swallowtail Butterfly. Living in the city this is a VERY unusual sighting for us. But it gets better. This butterfly not only visited Peter but the butterfly decided to perch himself right outside Mattie's bedroom window!!! This butterfly could have perched himself anywhere, but he didn't, and when it comes to butterflies I don't believe in coincidences.

While I was working on tonight's blog, all of a sudden Peter and I heard something upstairs come crashing down. It startled me and I had no idea what it was. When I ran upstairs, I checked every room. When I came to the bathroom that Mattie and I used to share, I found the terracotta butterfly (which I just recently bought on our trip to Emerald Isle in June) on the wall had taken a flying leap into the sink. Do you know that it did not break or chip!!!! I have no idea how that is physically possible and frankly I have no idea what caused the butterfly to fall from the wall. The nail was intact and still on the wall, and we had no tremors, or anything to cause this piece to come off the wall. It is NOT explainable at ALL!!! I haven't had a Mattie occurrence in a long time, but as I told Peter.... Mattie was with both of us today. Or at least that is my own interpretation and I am sticking with it.
 

Friday, July 12, 2013

Friday, July 12, 2013

Tonight's picture was taken in July of 2009. Standing next to Mattie, was his self designed creation, "Dr. Crazyhair!" In the background of this photo, sitting by the art table, is Brandon. Mattie's big buddy and close friend at the hospital. Peter took Mattie to clinic that day, so I did not get to see the creation and building of Dr. Crazyhair, but was shocked when this wooden fellow came into our home. Shocked because back then our home was already packed to the gills with other Mattie gifts, toys, and creations. Things came into our home at a fast pace when Mattie was sick and because we were never home, I was unable to organize and process them. We lived in total chaos for years! Ironically, Dr. Crazyhair, as big as he is, remains in Mattie's bedroom today. I am slowly getting to the point where I realize I want to take some photos of Dr. Crazyhair and then perhaps say good-bye to him. There are some key pieces in Mattie's room that I would prefer to feature and slowly as I address Mattie's room this will be possible.

Quote of the day: The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. ~ Abigail Van Buren


Tonight's posting is short to non-existent. I have been suffering with a massive headache for three straight days now. As many of my faithful readers know, I have not had a headache free day since April 3, 2002 (the day before Mattie was born). Most days I can tolerate the pain and function right through it, however the past couple of days isn't one of these times. About 2% of the US population has daily chronic headaches like myself. We represent a small group and even more frustrating is that research shows that NOTHING really works for us from medicines to alternative treatments. So anyone who deals with chronic pain understands me when I say this is debilitating, you live with the fear of wondering when this lighten up, and you learn the art of patience. May tomorrow be a better day.

Thursday, July 11, 2013

Thursday, July 11, 2013

Tonight's picture was taken in July of 2009. As you can see, Peter was holding Mattie during a physical therapy session as he was trying to learn to walk again. Something Mattie never actually did. Weeks after this photo was taken we learned that Mattie's situation was terminal. To think we were pushing him to try to walk and regain strength, all the while, he was so weak and really did not have energy for much. It makes me pause and at times I feel guilty for insisting Mattie have therapy, but I had no idea Mattie's cancer was out of control. However knowing what we know now, Mattie was not only a trooper but amazing. Most of us going through the same thing, would have taken to our beds with depression. What I also love about this photo is the expression on Anna's face. Anna was Mattie's physical therapist and she not only worked wonders with Mattie, but she was someone I trusted. She always told me the truth about Mattie's progress, his future potential, and she rose to each challenge Mattie's case delivered.


Quote of the day: Life is like riding a bicycle. To keep your balance, you must keep moving. ~ Albert Einstein


As Mattie's diagnosis day (July 23) is quickly approaching, I do find that it impacts my mood and attitude about July and about life in general. It is a time of year that I no longer enjoy, though I must admit that each season is packed with issues. Einstein's quote does resonate with me and I find when I get sad, upset, anxious, and at times angry, I do need to move around. Movement helps, it certainly expends unproductive physical energy, but it also helps to clear my mind. I completed the last Foundation Walk chore today and that was thrilling! Hard to believe that two months post-Walk, I am still at it. But it is the nature of the event and of course not having a staff doesn't help. It is funny, when I come in contact with people interested in our Foundation, they always ask me for the contact information for my "staff." My joke is that I am a staff of one with the motto of slow and steady wins the race. Throughout my years in graduate school people always told me that I seemed do the work of twenty people and I was always asked.... do you sleep?! I suppose working my way through my graduate degrees was good experience for me because I learned all sorts of skills.

In between running chores today, I went to visit my friend Mary who lives in an assisted living facility. Mary was completely mute today, however despite that she gave me a big smile and I could tell was happy to see me. What I wasn't expecting however was while at Mary's facility I ran into a former counseling colleague. This is a colleague who specializes in trauma and grief. In fact, he is very well respected in his field and he is one of the guest speakers I always invited into my assessment and diagnosis class which I taught at the University. The last time I saw my colleague was at Mattie's funeral in 2009. However, as we passed each other in Mary's hallway, we both stopped, did a double take of each other, and then immediately recognized each other. I don't expect to be bumping into anyone I know while visiting Mary. Since trauma and grief are his areas of expertise, he understood immediately the issues I was bringing up. One of the issues I discussed was that of being a "victim." It is very easy after losing your child to cancer to feel like a victim. In fact, anyone who survives a trauma feels victimized and for a while one needs to feel this way in order to seek the safety and protection one needs to restabilize. However, as time moves on, the victim philosophy does lighten up, but I can't say it completely disappears. On some of my down days, it is very easy to want to throw my hands in the air and say I give up. This is what life has brought me and at times I feel there is no way out of these feelings. Grief is a mind game and I am learning the game as I go. This all may seem really out there or perplexing to my readers, but it wasn't out there to my colleague at all!

Before I left, he brought up the George Washington University. He said things are not the same since I left. I just looked at him perplexed. He said that he still comes to the class I used to teach, since the new professor teaching the course continues to follow my syllabus and invites him back each semester. But he feels it isn't the same. He wanted me to know that it was very evident to him that my students loved me and more importantly respected me. My friend Denise, who was also a guest lecturer, told me this all the time. I made a mental file of it, but when I heard it today, it made me smile. I took teaching seriously, I worked as hard or harder than the students at times, and my work wasn't just during class time. I helped students at all hours and days of the week. I do believe the personal time and connections I made with students enabled me to earn their respect. Either case, my colleague understood how this felt like another lifetime ago for me, yet hearing his comments made me feel very appreciated and that I made a difference. Amazing how a few kind words can change one's immediate outlook! 

Wednesday, July 10, 2013

Wednesday, July 10, 2013

Tonight's picture was taken in July of 2009. Though this photo is a bit blurry or cloudy, I absolutely love it! I remember this day in the clinic as if it were yesterday. Next to Mattie is Maya! Maya was the ONLY same aged friend Mattie made at the hospital. Mattie's other two friends (Brandon and Jocelyn) were older than him. Maya was the girl counter part to Mattie. She is very bright, speaks her mind, and is a force. She lights up a room, not unlike Mattie. I will never forget how these two became friends. On a different clinic day (not pictured here), they were sitting around the art table. Mattie was working on an art project, along with other kids sitting at the table. But it was pretty quiet at the table. Until Maya said, "I hate needles." That was it, Mattie quickly responded that he understood and he hated them too. Their friendship blossomed over this innocent statement. In this photo, Mattie and Maya designed the box with the red curtain that you see. This was NO ordinary box. This box represented a planet and the silver thing inside was a flying saucer. They not only created the box, but they concocted a play around the box. They were acting it out here and I couldn't help but snap several pictures of this event. What you can't see from this photo was the fact that the table was surrounded by people watching the performance!


Quote of the day: We're paying the highest tribute you can pay a man. We trust him to do right. It's that simple. ~ Harper Lee


Tonight's quote is from the well known book, To Kill a Mockingbird. I would say that most people approach their doctors with this exact sentiment! We trust our doctors to "DO RIGHT!!!" Perhaps I am cynical or perhaps I have just experienced enough doctors to know TRUST must be earned!!! Trust should not be given away and it especially should not be granted to just anyone with a medical degree. A medical degree does not equal cart blanche to trust. In fact, I would say at the end of the day, one's best doctor is one's self.

As I mentioned yesterday, I went to see my oncologist today. I took an MRI three weeks ago and never heard from her regarding the results. Now you could be saying, well what doctor calls you personally to tell you the results?! Well this one does, or was supposed to. That was our agreement. In fact, I left the doctor I had a Georgetown for this exact reason. He never reported the results to me and thought that was a fine practice. Of course there were other issues about him and his nurse that I just couldn't stand.

So today's doctor is from Washington Hospital Center. She is very aware of Mattie's cancer and his death. Which is why I have her email address and we tend to communicate between appointments that way. After I took the MRI, I emailed her so she had a heads up that a report was coming her way. But I never heard back from her. So instead of playing around with this, I decided to make an appointment and get some direct answers.

When I arrived today, I first interacted with her nurse. No surprise that the nurse and I immediately connected. She started by asking me how I liked the warm weather. When I told her I LOVED it, she literally hugged me. She said she does too and that we are in the minority. She had me laughing. While taking my blood pressure she asked me why I was visiting today. I told her I wanted my MRI results. She said.... "Good for you!" I told her I can't assume a NO CALL means that the results are okay! She related a story about herself and how she too tracked down her results only to find that something was caught on a scan. Something that her doctor did not call her about. So it does happen!!! You can't always TRUST that the medical profession is going to do the right thing. You must be your own advocate. Until I see a report for myself, I believe nothing.

I started out the conversation today with my doctor with..... "I'm here to see you about the MRI results. Since I did not hear from you, I don't want to assume that everything is fine!" She got my point and did give me my report which thankfully showed that my condition is stable. Before leaving her office she stated, "this should teach you not to look for trouble." What..... are you kidding me??! I couldn't let that comment go. I reminded her that my urologist was the one who prescribed the original scan back in February of 2012. The scan that captured not a bladder problem, but a different issue. I did not ask for this scan, it was recommended that I do this! So I wasn't looking for trouble, but once trouble was identified, don't I have an obligation to myself and my health to be vigilant about it?! Honestly!!! Then I told her outright that I have learned from Mattie's battle that being diligent, asking questions, and pursuing an issue is the only way to get down to the bottom of things. The fact that I have to explain this to a medical doctor, mind you a top rated one!!!!, is SO beyond me. Even if I were a hypochondriac, which I am not, the fact that I lost Mattie to cancer, should be a clue to this woman that medical issues are red flags to me. Especially when in February of 2012, the radiology report read that I most likely had a rare cancer!

I really don't make this stuff up! It happens, and it happens even with the best of medical doctors. That is the scary part. Getting sick is NOT for the meek, which is why an advocate is needed regardless of your age.

Tuesday, July 9, 2013

Tuesday, July 9, 2013 -- Mattie died 200 weeks ago today.

Tonight's picture was taken in July of 2009, about two months before Mattie died. I do not typically show close ups of Mattie's legs, but as you can see Mattie was emaciated. He really wasn't eating or drinking ANYTHING by this point. Some times I wondered how Mattie survived on a day to day basis. I am sure the IVs we gave him at home helped and whether we wanted to be or not, we became proficient in managing his day to day medical care. Every thing from broviac dressing changes (which were an absolute nightmare), pain med manageable, anti-emetic administration, the administration of oxygen, and the list went on and on! As you can see from this photo, Mattie was our helper! He was a very good painter and that summer, like many before that, he helped us paint the deck. Mattie was my kind of painter..... he paid attention to details and was neat!


Quote of the day: That was the thing. You never got used to it, the idea of someone being gone. Just when you think it's reconciled, accepted, someone points it out to you, and it just hits you all over again, that shocking. ~ Sarah Dessen


I began my day with zumba class. Today's class was the last one until later in August. For me, this is a great way to start the day. I love our teacher and she attracts a lovely group of women to the class. In a way it is therapeutic for me to jump around, hear music, and socialize with people. Funny how one thing can accomplish so much for me in one hour!!!

Later in the day, I went to get my hair cut. I have been going to the same hair stylist for YEARS. I have followed her around DC, until she opened up her own salon. Celina knew me before I had Mattie, then while I was pregnant, was a mom, and then of course throughout Mattie's ordeal. Each year, Celina's salon comes to the Foundation Walk and sets up a nail art table, and Celina's daughter today mentioned how they have ideas for expanding services for next year's Walk. Over the years I have gotten to know Celina, her sister, her husband, and her daughter. I am absolutely honored that they are moved by our cause and want to help Mattie Miracle. While chatting with Celina today, she asked me how I do all that I do and not become depressed myself? An excellent question! However, since she is a lot like me, she understood my response. The response is I am not good at taking care of myself, but I do find a level of satisfaction and purpose from helping others. It is through helping others that I find ultimately I am helping myself.

This evening, Peter and I are managing through the heat. Our complex lost air conditioning and I am hoping it returns soon. Somehow the heat has gotten to me tonight. I am meeting with my doctor tomorrow to finally go over the MRI results, a test I took weeks ago! Don't get me started on the state of the medical community. In so many ways it needs an overhaul and from my perspective it begins with medical training. Something goes very wrong from learning about the practice of medicine to the implementation of care. Doctors forget that patients are human, we have emotions and feelings, worries and fears! It gets tiring to have to constantly educate these folks, but if you are going to be my doctor, one should get ready for the lecture. Because tomorrow I assure you my doctor is getting one!!!!

Monday, July 8, 2013

Monday, July 8, 2013

Tonight's picture was taken on July 4th of 2007. We took Mattie to Boston to visit Peter's parents and family. Sitting next to Mattie is our nephew, Nat. Nat is now 16 years old, but when this photo was taken he was only 10 years old. Around the age Mattie would be today if he were alive! For me, Mattie will always be stuck at the age of 7, yet I see many children all around me growing up. Naturally this is part of life, just not a part of our lives.  

Quote of the day: Life's under no obligation to give us what we expect. ~ Margaret Mitchell


Margaret Mitchell's quote is simple, one sentence long, and to the point. But wow, she was SO right!!! Expectations maybe what causes some of our greatest disappointments. We have expectations for our future, our careers, our family, our friends, and the list goes on. When such expectations are not met, a host of emotions or thoughts can arise. Such thoughts as.... I am a failure or my friend, spouse, mom, sibling, etc. doesn't love or truly care about me.

In life, we all experience highs and lows. What produces highs and lows maybe different for each of us, meaning the triggers maybe different but the outcomes in many cases are the same. When going through high or low points, most of us have the expectation that those closest to us will understand, want to be there for us, support us, celebrate with us, and so forth. Chances are when this doesn't happen, when such an expectation isn't met, great disappointment ensues and it compounds the hurt from the low, or deflates the happiness of the high point! I am just as guilty, if not more so, about having high expectations for those closest to me. I have found though that level setting my expectations for others does help to mitigate many of disappointed feelings. Yet I hold high expectations for myself as I relate to others. But at the end of the day, the only expectations I can manage or change are my own. It would be a lot easier if we could just shut out the world at times, to protect ourselves, yet I have found the secret to surviving life is really quite simple...... we need the love and support of key people in our lives.

Today was a day filled with chores. The highlight for me was going out to lunch with my two friends, Carolyn and Mary. Carolyn's birthday was in May and we just got around to celebrating it today! On the way to the restaurant today I noticed that the air conditioning wasn't working in my car. The notion of losing two of our cars to repairs in one week was beyond what I could handle. So on the way to lunch, I called Peter and we strategized how to fix this problem. Since it is HOT in DC, driving around without air for a long period of time, isn't a great plan. However, to my surprise, after lunch, I turned on the car and the air was working! My mom called it a "Mattie Miracle." Whatever it was, I am thrilled not to have our second car taken away from us this week.

I was going through one of our kitchen cabinets today and came across a beautiful bottle in the shape of a half moon. You can see it on top of our mantle clock. The irony is I can't recall if Peter and I brought this bottle back from Italy or whether my lifetime friend Karen gave it to me. This cute bottle contained Limoncello at one time. Limoncello is an Italian lemon liqueur mainly produced in Southern Italy, especially in the region around the Gulf of Naples, the Sorrentine Peninsula and the coast of Amalfi. I added this cutie to our orange Mattie tribute. In the background is Mattie's "Mr. Sun" painting, a smiley face star bottle which we got on our trip to Lewes, DE, and now a moon bottle from Italy. So we have the sun, the moon, and the stars all well represented in orange!

Sunday, July 7, 2013

Sunday, July 7, 2013

Tonight's picture was taken in June of 2003. I remember taking this photo of Mattie like it were yesterday. He managed to get his body from the living room to our dining room. This was a big deal, because even though Mattie was a year old, he wasn't walking yet or toddling. Mattie wasn't a crawler either. But he had his own unique way of scooting himself around. So I captured him with his cute blue whale overalls on migrating from one location to another.


Quote of the day: One time I saw a tiny Joshua tree sapling growing not too far from the old tree. I wanted to dig it up and replant it near our house. I told Mom that I would protect it from the wind and water it every day so that it could grow nice and tall and straight. Mom frowned at me. "You'd be destroying what makes it special," she said. "It's the Joshua tree's struggle that gives it its beauty. ~ Jeannette Walls


Tonight's blog is super short because I am simply exhausted from the drive from Boston to Washington, DC. It was a LONG nine hours with intense traffic. We are home safely and the rental car has been returned to the airport. I appreciate all the emails about our car accident and for the support. Until tomorrow!!!! As always thank you for visiting Mattie's blog.