Monday, January 13, 2014

Monday, January 13, 2014

Tonight's picture was taken in January of 2004. If I entitled this photo, it would be "a boy on a mission!" As you can see Mattie LOVED cardboard boxes. His affection for boxes happened early in his life, before preschool, kindergarten, or his time in the hospital. In many ways we would always joke about the fact that we could buy the greatest toy for Mattie, but at the end of the day, he gravitated to a new box. Boxes that Mattie rejected, were immediately claimed by Patches, our calico cat. Mattie didn't just play with the boxes, he transformed them into things, and then incorporated them into his play scheme. 


Quote of the day: Doing nothing for others is the undoing of ourselves. ~ Horace Mann

I had planned to meet my friend Tina today for lunch. However, last night I tried to text message her to find out today's plan. I am still getting used to having an iphone and instead of texting Tina, I landed up calling her by accident. Tina immediately picked up the phone and thought there was a crisis. Those closest to me, know I have been conditioned to NOT talk on the phone. Therefore if I am calling, I typically have a problem. Last night the only problem I had was pilot error. Yet here is what I discovered, by hearing Tina's voice, I could immediately determine that she wasn't feeling well. I am not sure she would have told me this through a text message. Any case, I was happy that I found this out and could instead help Tina today put away many of her beautiful Christmas things. 

You can learn a lot about a friend through his/her possessions. Tina, like me, is a sentimentalist and collects ornaments from all her travels or family adventures. So in essence her tree is not only a sight to see, but it is like a piece of family history. The other wonderful part about this is she has instilled this gift to capture family memories within her children. The next generation loves this family tradition, and I know this since I had the opportunity to chat with one of her daughter's after school. Any case, yes we may have been putting ornaments away, but it is through each ornament I got to hear more about my friend and her interests. It wasn't just a task, but through our working together our friendship grows.

In many ways, Tina is my first new friend that I developed after Mattie's death. Last year, Tina allowed me to use her house to host a surprise birthday luncheon for our mutual friend. Tina and I worked for days on setting up this party and after working a solid week together, we got to know each other's working styles quite well. The party was a success last year and we still talk about our great accomplishment together. 

I can't think of a better way to get re-engaged back into the world than by helping others. It is life's greatest and most meaningful diversion. Of course not everyone is comfortable asking for help or expressing that need, but one should always keep in mind that by accepting help, you are in essence helping the giver as well. 

Sunday, January 12, 2014

Sunday, January 12, 2014

Tonight's picture was taken in January of 2003. This was by far Mattie's favorite mode of transportation. Being on Peter's back! I suspect a lot of it had to do with the fact that this gave Mattie a bird's eye view and his feet could dangle and be free. Seeing this photo always reminds me of how we used to spend our weekends. Despite the weather, we always took Mattie outside. Mattie responded to fresh air and was intrigued by nature. The irony is before I had Mattie, none of these things truly interested me. But with Mattie, I developed a love for nature and the beauty and freedom that only being outdoors can give you. 


Quote of the day: Start by doing the necessary, then the possible, and suddenly you are doing the impossible. ~ Francis of Assisi


Last night I learned that I apparently can text message as much and as effectively as a 17 year old! Peter was watching a Patriots game on TV, and in the process was text messaging back and forth with our nephew, Nat, in Boston. Peter told Nat that I finally got an iphone and with that Nat sent me a message. If I had any doubt that I couldn't figure out touch screen technology, my conversation with Nat last night convinced me that all my fears were unfounded. Literally we typed back and forth with each other for almost two hours. The messages were flying and as such I told Peter that I finally met my match. There was someone else out there who enjoyed chatting by text messaging just as much as me. Needless to say this was a good way to start my first day with the iphone and of course it was lovely to hear, "I love you Aunt Vicki!"

A while ago my dad sent me the above quote by St. Francis. As I reflect upon it tonight, St. Francis was in essence in my opinion talking about grief. Goodness knows we have been inundated in the world of bereavement by Kubler-Ross' stages of grief (denial, anger, bargaining, depression, acceptance). I do think Kubler-Ross greatly contributed to the field but unfortunately her stages have been taken out of context over the years because she never designed them to help people suffering from a death. Nonetheless, pop culture has applied her work to all of us grieving and literally our society expects us to follow a very linear pathway to healing. If it only worked that way!!! The beauty of St. Francis' quote however it is aptly and succinctly illustrates the pathway of grief. A pathway I suspect applies to many who have lost a child as well as anyone who has lost an important person in their lives. 

St. Francis' keywords are: necessary, possible, and the impossible. To me this is brilliant simplicity. In the beginning phases of intense grief even accomplishing the NECESSARY is a feat. The necessary in my book is getting up, showering, eating, and managing one's most basic tasks of living. Over time, as the necessary becomes ingrained in our lives again, we find that we are more open to other POSSIBilities. Possibilities may come in different shapes and sizes depending on who we are and our circumstances. For me my possibilities came in the form of attending a zumba class, meeting new friends, becoming invested in other activities, and helping others. At first my helping involved assisting my friend's parents who were ill, but what I found was through helping this enabled me to re-engage with the world. That I was needed for some other purpose, a purpose that I hadn't thought about before. 

As I became invested in the possible, eventually it helped me do the IMPOSSIBLE. Which from my perspective is to advocate for children with cancer and their families. Not only advocate but to try to tangibly make a difference in their cancer journey. There is one caveat here too, because to me NO ONE truly ever graduates from the NECESSARY to the POSSIBLE, and then to the IMPOSSIBLE. Rather, I would say that we can revisit any of these points in time, again and again. Why? Because many things can trigger feelings, emotions, hurt, sadness, and memories of our loved one. Sometimes we are prepared and can manage and other times we are unable to do so, and we feel set backs. Set backs which again make us feel that we can only do the NECESSARY! Living with grief means accepting that life has and will always have many set backs along the way. 

Today we met our friends in cancer for lunch. Our friends lost their son in June of 2013. For them their loss is very raw and very fresh. I can remember these days all too well, days in which I wondered how we remained alive at all. Some days I felt like I was on autopilot. I think in the beginning of the grief process we all go through the quandary of whether we are grieving in the right way! At times it is hard to even decide if we are or aren't because we receive a lot of outside input, advice, and at times judgment from others. I lost track of the number of people who told me I needed counseling, I needed help, and the 1000 and one questions about moving on without Mattie. At times I took all of this to heart. Fortunately early on, I was able to consult with Mattie's social worker, Denise. I will never forget what Denise said to me. Basically Denise asked me why I thought I needed counseling...... for myself or because others told me this is what I should do. Denise was 100% correct! She understood that no matter how others wanted to understand and help me, they couldn't possibly get what I was dealing with and therefore shouldn't judge. It was that one simple sentence that Denise shared with me that empowered me. 

Part of the battle with dealing with grief is to be able to battle your own internal dialogue and fears. Once I acknowledged them and accepted them, then honestly it became easier for me to know that my grief work must be self-directed. That no one has control over my feelings and how I should think or feel about Mattie's loss. I am not directed by my friends and what they feel I should do or act like, I am not directed by others grieving their own losses, and in a way this is all so freeing. It means that I am free to grieve like Vicki, how ever that looks, and I assure you it looks different at different times of the year. 

This afternoon, Peter and I went to AC Moore and we bought things we needed there to complete several projects at home. We hung up all the photo canvases I made of Mattie on the wall in his bedroom. I call this our "Mattie wall," and to me it adds a whole new dimension to the room. Then we spent some time outside on our deck cleaning up. There were piles of leaves, other debris, and all the horrible stuff our complex put down on the pavement when it snowed a few weeks ago. To me this stuff looks like kitty litter, but I was tired of carting it into our home on our shoes. So we dealt with all of that and in the midst of that we started scraping up the paint on our deck. Though we painted the deck this spring, all of the paint is chipping and coming up. It is a hateful sight and we think that having large carts carrying 2000 pounds of candy back and forth truly damaged the paint. Any case, it was a busy evening for us, but we appreciated the simple fact that we could do this together. 

Saturday, January 11, 2014

Saturday, January 11, 2014

Tonight's picture was taken in January of 2003. Mattie was sitting in his high chair. Not one of his favorite places to be or to eat in. In fact, when Mattie began eating cereals and things at four months, he refused sitting in anything other than his car seat. Mind you Mattie did not like the car seat at all when it was in the car, but when it sat on the floor in our home, he LOVED it. So much so that the first few months of his life, if Mattie wasn't sleeping on my shoulder, then he was in his car seat. Literally I would put Mattie in the car seat and put the car seat in his crib! It was a sight to see but back then whatever worked was what was done! The desperation of being a new parent. As for the high chair, Mattie eventually got the hang of it and was motivated to eat certain things like crackers, oatmeal, pureed pears, and sweet potatoes (his favorites!). 


Quote of the day: The ultimate expression of generosity is not in giving of what you have, but in giving of who you are. ~ Johnnetta B. Cole


Well the day came in which I said goodbye to my Blackberry and transitioned over to an iphone. Frankly I do not succumb to peer pressure and could care less who has made fun of me over the years for my phone preference. Peter has been preparing me for months now that this change was imminent for me and vital to do, but his calendar reminder which I explained in last night's blog posting was the push that I needed. I do not care for change in general and I particularly do not like changes that have emotional connections associated with them. For me, I had an emotional attachment to the Blackberry. However, my phone was on its last legs, the Internet connectivity had stopped working, and the phone just couldn't handle the amount of emails and text messages I stored on it! So all these drawbacks and Peter's rationality, helped me to get into the phone store today. Thankfully Peter took me to an AT&T store to transition over because I find Apple stores challenging sensory wise. That is a whole other conversation. 

The AT&T representative who worked with me clearly LOVES technology and I think he was frankly gitty to help a Blackberry user become an iphone user. He acknowledged my hesitation, but said I would catch onto it and then most likely never want to go back! Any case, this fellow made the whole purchase very easy and I loved the fact that I received a free phone upgrade today. That alone made me day! Any case, Peter sat with me for HOURS helping me transfer over my contacts, establish my three email accounts, and also help me understand how the phone works. Needless to say, my mom and Karen (my lifetime friend) were both text messaging me back and forth for hours about this transition. I sensed elation from them that I finally made this decision. 

In the midst of this big transition, Peter and I went for lunch at Clyde's in Tyson Corner. We are fortunate to know Becca Fischer, the executive chef there. However, prior to working in Tysons, Becca worked at the Clyde's in Alexandria, VA. Which was Mattie's favorite restaurant. After Mattie died, the manager wanted to support us in some way and when he heard about our Foundation Walk, he offered to connect us with Becca. I had never met Becca in all the years Mattie visited Clyde's. She clearly cooked for my son, and that alone is a special connection. In any case, in 2011, Becca donated all the hot food items to our Walk. But you should note that she not only gives us the food but comes to the Walk to cook it and serve it. She is a dynamo and with a huge heart. She gives Mattie Miracle 100% of the proceeds from the food! Becca is passionate about our mission and today she committed to coming to our Walk in May, which happens to be our 5th year anniversary. While talking to Becca, you can't help but be inspired by her. Her kindness and generosity inspired me so much, I was in tears. 

For those of you not familiar with Becca, I have included a link below of a recent article in which she was interviewed. If you go to the Tysons Corner Clyde's (http://www.clydes.com/tysons), I highly recommend that you ask your server to have Becca come out and say hello. Just tell her you are a Mattie Miracle supporter and appreciate her incredible generosity of time and skills. All of which help us raise money for childhood cancer. 

http://www.womanaroundtown.com/locations/new-york/wats-proust-questionnaire-rebecca-fischer-executive-chef-at-clydes-of-tysons-corner

Friday, January 10, 2014

Friday, January 10, 2014

Tonight's picture was taken in January of 2003. This has to be one of my favorite photos we captured of Mattie. You can see Mattie was staring at something or someone! The person in question would be me. Mattie always seemed to find me no matter where I was in our home. It was like he was part homing pigeon! Peter joked with me often about photographs of Mattie. According to Peter, Mattie had a different look and smile on his face if I was in Mattie's eye shot. I am not sure that is exactly true, but I do know hearing this always made me smile. 


Quote of the day: In the end there doesn't have to be anyone who understands you. There just has to be someone who wants to. ~ Robert Brault

When I was in Los Angeles recently, I received an email that a reminder date was placed on my Blackberry calendar. Naturally not having sent myself the email, I clicked on it to read what the issue was. Low and behold, what did the message say?????????????? Upgrade to an i-phone and then have lunch! No this wasn't some sort of come on from the Apple store. The message was sent by Peter. It was a subtle reminder that I need to get with the 21st century. Needless to say while in California, Peter would do a countdown for me of days until getting an i-phone. 

I am sure to the average person my hesitation about getting an i-phone seems ridiculous. After all, I am sure those of you with one already know that you can do SO much more than I can with a Blackberry. But the Blackberry for me has symbolized more than just a technological gadget. It was my life line when Mattie was battling cancer and then became my virtual support group the first year after Mattie's death. My Blackberry has been with me through all the highs and lows of Mattie's battle and honestly it was in the hospital that I learned to carry the phone with me EVERYWHERE! It even was right next to me while sleeping. Mattie's journey with cancer was surreal and those around me shared in this surreal experience. Some people in our care team would email me at ALL hours of the day and night. In many ways when dealing with life and death circumstances, normality disappears and I know I wasn't oriented to time, days, and most happenings around me back then. I became totally engrossed in beeps, buzzes, the rhythm of an intensive care unit, and of course every sound, moan, and action of Mattie's. When Mattie was alive people wanted to connect with me, they wanted updates on how he was doing, and basically some lived the frenetic pace with me. 

This summer, I confided in one of our crucial members of team Mattie that it was a very hard adjustment after Mattie died to go from being on the forefront of everyone's mind (with many many text messages and emails), to slowly becoming a faded memory. The fading definitely happened during our second year of grieving. It wasn't subtle either, it was a profound disconnect. Loss is a funny thing, others may witness it and may even experience it through you, but only you have the actual wounds and scars. As such, time plays different roles for the observer versus the one who was actually in the train wreck (ie, losing a child to cancer). I suppose as I transition to an i-phone it symbolizes many things to me. It isn't just simply migrating from one phone to another! Instead, it signifies the actual big change in our lives, in which I no longer live in a hospital and in crisis, caring for a seven year old boy. It also is a tangible reminder that our care team is not the same as it once was and the nature of how I use a phone now is strikingly different. 

The day Mattie was diagnosed with cancer, July 23, 2008, was the day that our world became one domino effect of loss. One loss leads to another and another. Some may think that our loss began on the day Mattie died, because that isn't true. It began on diagnosis day when we had to grieve the loss of a healthy child, then the loss of a child with functioning limbs, the loss of not living a normal life, the loss of freedom that comes from living in a hospital, the loss of friends, the loss of an identity, and the list of losses just continues to grow. Saying goodbye to my Blackberry is in essence another loss for me, because this phone has served as a reminder of our hospital battle and a time in which we were a family of three not two. 

Thursday, January 9, 2014

Thursday, January 9, 2014

Tonight's picture was taken in January of 2003. Mattie was sitting in "tot wheels!" Which had to be his all time favorite toy when he was a toddler. Years ago such a device was referred to as a walker. When Mattie was born (and there probably still is) there was great controversy about the use of walkers. From dangers about falling to the delay of independent walking. All I know was tot wheels was our saving grace. Mattie zoomed around our first floor and outside in our commons area on this thing. He loved the independence, the freedom, and the control that moving on his own gave him. Typically when in tot wheels, there were big smiles like you see here!


Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it's not because they enjoy solitude. It's because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult



Today I had the opportunity to meet a friend for lunch. We chatted about a bunch of different things and her creative idea to present at the Foundation Walk in May. Over lunch she asked how I was doing. That of course is a loaded question and depending upon who I am with, the answer may differ. I am always candid, but I just may not elaborate on my feelings or our situation in great detail. The irony is my lunch mate and I share a couple of mutual friends, yet she wasn't aware of how I knew her friends. That to me was surprising, I guess because most of the people I interact with socially know quite a bit about Team Mattie, who coordinated it, and many of the players of our Team. So in a way it always catches me off guard when I meet someone who is a bit more removed from our journey. Yet being removed enables me to talk about the journey because if I don't talk about it, the person I am with will not understand the situation or grasp the beauty of Mattie's life. Which is not an option in my book. 

For me, surrounding myself with people who shared Mattie's battle was and still is key. Or at least it is key in how I manage and cope with grief. This has been a vital factor right from day one when Mattie died. I would have to say the first year after Mattie died, NO ONE NEW came into my life AT ALL. I was insulated from the outside world and I guess this desire was what made it impossible for me to go to a support group. My support group had to be people who lived Mattie's cancer battle with me. I did not want to share my story with strangers even strangers who may have had more commonalities with me than my actual friends. Mattie's battle with osteosarcoma was so egregious that unless you saw his battle wounds and felt his anxiety and depression with me, you couldn't be part of my inner circle. An inner circle which was needed to help me re-engage in the living world in a safe manner. 

Everyone's grief journey is different, people need different things, and what works for me, may not work for the next parent. But I can safely say that insulating myself had its mixed blessings. Because once a year of grieving was over, things in my world changed. Change is hard for any one of us under the best of circumstances, but under the worst of circumstances change is viewed with fear, anxiety, confusion, and even abandonment. We all want to help others in pain and grieving, but I think we have to seriously consider what happens when we stop providing the same type of support for years to come. For many of us, we think providing help the first year is enough and the grieving parent will then be able to manage moving forward. VERY INCORRECT! If one gets nothing else from the blog, please remember that grieving for a child lasts a lifetime! I know that it may feel that the intensive grieving stage is over after a year, but in my perspective this is just when real grief work begins. Therefore, my one piece of sage advice when helping a loved one grieve is to talk about what that person needs moving forward, making assumptions or putting one's own value judgment on the situation ultimately does more harm than good. 

Any case, in response to my friend's question at lunch, I said that I am living, and yet there are days in which I don't feel a part of the living world. Now she could have acted surprised or perplexed, but instead she went on to explain how she feels that many people around me share this feeling. Certainly not for the same reasons, but nonetheless the outcome is the same. This dialogue took me right back to a lecture I once heard in graduate school. Within the lecture was a story about Mother Theresa's visit to a crowd in Baltimore. Her pronouncement had to do with loneliness and the fact that she was visiting a very large urban city where people are surrounded by others, and yet what she observed was very sad, isolated, and abandoned people. That story always remained with me because I think the crux of many mental health issues involve loneliness. 

Loneliness in my opinion impacts how we feel about ourselves, the world around us, and can be such a negative spiral because loneliness breeds more loneliness and issues. I am always saddened to hear when people feel misunderstood, not appreciated, and disconnected from friends and family. In many cases the reasons for these things vary, but at the core of what I was talking about today was loneliness that transpires because of a tragedy and unexpected occurrence like the death of Mattie. Certainly we all know what loneliness feels like, but I do think the cause of the loneliness and the feelings associated with that cause must always be assessed and understood. 

Wednesday, January 8, 2014

Wednesday, January 8, 2014

Tonight's picture was taken in January of 2003. Mattie was eight months old and as you can see he was sitting in his entertainment saucer. I remember when Mattie was three months old, one of my college roommates mailed me this huge saucer as a baby gift. At first I thought......... WOW where is this going to fit??!!! But as any parent with a small child knows, you embrace anything that helps engage your child and captures his/her attention. Ironic isn't it that babies and toddlers are small and yet all their equipment is enormous and takes up so much space?! Any case at four months old we tried to put Mattie in this saucer seat. Mattie HATED it and began kicking, screaming, and crying! However, over time, and after many attempts, Mattie came to love this seat. It gave him freedom to move his legs, twirl around, and be in control. Which was key..... Mattie liked independence and control right from the beginning. 


Quote of the day: The first duty of love is to listen. ~ Paul Tillich


My friend sent me this quote this morning and as soon as I read it, it resonated with me. So many issues between friends and loved ones arise because NO ONE is LISTENING. After all listening is hard work. Of course listening may not happen for multiple reasons. One, we think we know better and therefore we stop listening. Two, we don't have the time to listen, and third, there is NOTHING to listen to because the person in question has shut down and is not talking. Several problems were presented to me today from various people I interacted with, and in every situation things got out of hand because listening and honest communication did not happen. As I expressed to one individual today, covering up information helps no one in the end, and especially when visiting a mental health provider, not providing the facts is not only harmful but it isn't therapeutic. It is true that I do not perform one-on-one therapy anymore and how I use my degree and training differs now, but at the heart of all human interactions is a bond and connection. Such connections are the cornerstone of any effective therapeutic relationship. I believe having therapeutic skills enables me to interact with just about anyone and this also gives me insights into their behavior and actions. Which may be why simple interactions for me, tend not to be so simple. 

This morning Peter text messaged and shared with me some unsettling news. Peter is usually the first person to enter his office suite in the morning. Today, when Peter got into the office, he wasn't alone. He startled an intruder who was trying to steal computers. The thief saw Peter and started running! They saw each other and Peter's presence stopped the thief before he walked away with more than just an old laptop. The scary part of all of this is this man could have been armed. Fortunately he wasn't since this could have been a very different scenario. Peter worked with the police and went through video surveillance footage to identify the criminal. Clearly there is never a dull moment and you just never know what the day is going to bring. Any one ever diagnosed with cancer, knows the profound effect that one minute can make. It is the difference between life without cancer and life with cancer. 

I finally ventured outside today and walked maybe three miles in this horribly frigid weather. It certainly would be easier to be sedentary, but I find that doesn't do wonders for my mood. In the midst of everything else today, the Foundation has received an invitation to speak at both a university and a national conference. In fact the national conference has asked us to be the keynote speaker. Now there is a daunting task. I have to find out more about this, but what this is telling me is that our Foundation's mission and platform is causing some attention, and a national psychosocial standard of care is not only our dream, but it is a necessary reality. 

Tuesday, January 7, 2013

Tuesday, January 7, 2013 -- Mattie died 225 weeks ago today.

Tonight's picture was taken in January of 2003. Mattie was nine months old and full of energy and life. Mattie was an incredible force, but that was apparent from the minute he was born. He kept all of us on our toes! Tuesdays will always remind me of the day Mattie died. Today marks week 225, which seems like forever and a day. Yet for me this is only a number, a number which really has no bearing on how significant a loss this is for Peter and me. 


Quote of the day: Take the first step in faith. You don't have to see the whole staircase, just take the first step. ~ Martin Luther King, Jr.


I was told by several friends and Peter that it was FRIGID in DC today! I have no idea, since I never left our home. Whether I got out or not isn't noteworthy, but I think the fact that many local school districts closed school today is! Maybe because I grew up in NY and also went to college in upstate NY, the notion of closing school for cold temperatures is an absolute riot! Have our bodies evolved differently in the last several decades? So much so that we can't tolerate the cold??!!! Or better yet, are our north east counterparts just hardier than us mid-Atlantic folks? After all New York and New England states do not close school for cold weather! I continue to be perplexed by the DC area and how it handles storms (storms mind you that produce an inch of snow) and now cold weather of all things. 

Last night when I got off the plane, I could feel the cold air immediately and it was like being attacked by a knife. Therefore, thankfully with my position with the Foundation, I can work where ever I am, so today I elected to stay home and was glued to the computer. I worked for nine hours straight processing all our annual fund donations. Though that was a great deal of time, it is a wonderful problem to have, it means that our supporters have once again enabled us to have a successful campaign. We are deeply grateful.  

Before I left for Los Angeles, I picked out paint colors for one of our bathrooms and our bedroom. Our faithful readers know that I spent the Fall transforming Mattie's room. It was intense work, with over 60 garbage bags full of donations to Goodwill. I think addressing Mattie's room, inspired us to continue working. But painting is hard work! I learned this from painting our first floor and Mattie's room with Peter. While I was away, Peter took on the painting without me and it was a great gift to come back and see two rooms transformed by color. Pictured here is the bathroom I used to share with Mattie. Now it is a very pleasant sunshine lemon color and the butterfly theme is being carried over here from Mattie's room. 

The second room Peter transformed is our bedroom. Like Mattie's room, this room had never been painted since we moved in years and years ago. Painting was long overdue, but Mattie kept us busy and I did not want paint fumes in our home with his young lungs. Our bedroom gets a great deal of sunlight and therefore a deep color works quite well. Keep in mind that prior to our painting, all our walls were ivory colored. But with Mattie gone, Peter and I need more color to help change our mood. I love all things Victorian, so I am in the process of giving our bedroom such a look. I love this dusty rose color and I am thrilled to see clean walls and watch the color change with different times of the day. 

Monday, January 6, 2014

Monday, January 6, 2014

Tonight's picture was taken in December of 2006. As you can see Mattie was wearing one of his favorite movie character's on his shirt. Lightning McQueen was the rage that year in our home!!! We had Lightning McQueen cars, clothes, slippers, an umbrella, and flashlight. You name it, we most likely had it! Now exactly what Mattie was doing here was besides me. He got it in his head that he wanted to put on Peter's pants. So the photo captured how well that worked out!!!






Quote of the day: How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these. ~ George Washington Carver


As I write tonight's blog, I am happy to report that I am safely back in Washington, DC. The weather in Los Angeles today was 80 degrees, quite different from the shocking 12 degrees which greeted me upon landing at Dulles Airport. As my faithful readers know, I dislike flying!! That is actually putting it mildly, I do it because otherwise my life would be limited geographically, but I have to psych myself out to go on a plane. With winter storms all last week, flights today were over booked, crowded, and all of this makes people TENSE! By the time I got on the plane, I found an older man in my seat. When I told him it was my seat, he proceeded to tell me that he wanted my seat so he could sit next to his wife. The only drawback was his seat was in another row, and was a middle seat. I tried to tell him that I booked an aisle seat for a reason, but I wasn't getting too far with him. He walked with a cane and I had observed him in the airport. He was antsy and couldn't sit still when off the plane, so I imagined on the plane wasn't going to be any better. So given his age, I wasn't going to argue with him and did him a favor. So I sat in the middle. I place I really do not care to be. The middle makes me feel trapped and confined. My luck though was that I was sitting between two men who kept to themselves and were pleasant seatmates. Thankfully despite winds in DC, we had a smooth and safe flight.

I want to send out a HUGE THANK YOU to the anonymous person who sent me the clip of Mattie below with his wonderful nurse, Katie. Here is the video clip I wrote about last night...... Katie and Mattie performing an impromptu version of the Three Little Pigs. To me this video is priceless and precious and I have now saved it in my files. I so appreciate you reading the blog and sending this electronic gift my way. You made my day!!!!

THE THREE LITTLE PIGS!!!! http://www.youtube.com/watch?v=BUYwM972jD8

Sunday, January 5, 2014

Sunday, January 5, 2014

Tonight's picture was taken in December of 2006. To me there was something very sweet and cute about Mattie's expression. It could be that the hats give this photo a fun dimension, but most likely what captures me was Mattie's face. He was really giving Peter a tight hug around his neck, which you may not be able assess, but as I look at Mattie's left arm and how he was bracing his face, it all becomes clearer to me. There was a lot of Daddy love that I captured in front of the tree that year.


Quote of the day: Courage is like a muscle. We strengthen it with use. ~ Ruth Gordon


This morning I was showing my dad several things on YouTube. Because I know we have a couple of videos of Mattie on-line, I tried to search for one in particular. Back in April of 2009, Peter captured an adorable video of Mattie with his nurse, Katie. Mattie and Katie were acting out the Three Little Pigs right on Mattie's PICU bed. It was an impromptu performance, but absolutely priceless. I LOVED that video! 

While searching for the Three Little Pigs, I found a Channel 9 story that was covered of Mattie from Mother's Day of 2009. I watched it with my dad and there was something very unsettling about seeing Mattie live on screen. Some how video is far more tangible than photos. Photos which I see everyday. For those of you who wish to see the Mother's Day video, you can click on the link below. You can see Mattie interacting with the TV interviewer and showing her his latest creation he built, you can also see some of the chaos and piles we were dealing with all around us. The YouTube Video:
http://www.youtube.com/watch?v=650k115rFo4

However what truly bothered me is that I couldn't locate the Three Little Pigs video on YouTube. I searched every where and then did a Google search. It is as if the video never existed. Needless to say that upset me because from my perspective it was the cutest video! This missing video also reminded me of a precious audio clip that was captured on a computer Mattie's school lent him while he had cancer. One evening while we were home from the hospital (which was rare), Mattie was sitting on his bed, waiting for me to get washed up for bed and come into his room. When Mattie developed cancer, Peter and I took turns (when home) sleeping in Mattie's room. Since Peter had to work full time, I covered many of the nights. Mattie was hooked up to all sorts of IVs, and therefore he could not be left unattended at night. Also because of all the IVs, Mattie had to frequently go to the bathroom at night. Due to his surgeries, he was unable to accomplish this task alone. He needed someone to lift him out of bed, help him with his clothes, and stand him upright. Any case, back to my story. While Mattie was waiting for me, he was creating some sort of visual electronic piece of art for me on his School's computer. However, while drawing, he was singing a song about me. A song he created entitled, Una Moon. Which was Mattie's nickname for me. Any case, I can still picture Mattie singing Una Moon to me, yet to this day, I do not have the audio clip of it. After Mattie died, I gave the computer back to his School, and never thought to download the song. 

Seeing the video of Mattie today evoked several feelings for me, and no matter how deeply I try to remember, at times I forget what Mattie's actual voice sounded like. Which is why today's video was so special to me. If I could only track down the Three Little Pigs and Una Moon!  

This afternoon, my parents and I went out to lunch. It was close to 80 degrees and we had lunch outside. On Monday, I fly back to DC, and I am preparing myself for the grayness and freezing weather awaiting me. All I can say is sun and warm weather in December and January is the way to go. Life is hard enough, you might as well have sun and warmth while living it. 

Saturday, January 4, 2014

Saturday, January 4, 2014

Tonight's picture was taken in December of 2006. We took Mattie to the grounds of the US Capitol and walked around to look at all the holiday decorations. We paused in front of this tree for a photo. Not a cloud was in the sky and it was a crystal clear day. Like every parent, we thought we would have many more holidays together. We weren't as fortunate however which is why I am glad we tried to make the most  of our time together. We were active with Mattie and while being active, I made a point to try to snap photos of these moments. Thinking that Mattie would want to see them in the future, never realizing that it would be ME who would actually need them!  


Quote of the day: Being vulnerable doesn't have to be threatening. Just have the courage to be sincere, open and honest. This opens the door to deeper communication all around. It creates self-empowerment and the kind of connections with others we all want in life. Speaking from the heart frees us from the secrets that burden us. These secrets are what make us sick or fearful. Speaking truth helps you get clarity on your real heart directives. ~ Sara Paddison

Just like we paid our first visit to the California ScienCenter this week, today we made our inaugural visit to the Gene Autry Museum. I have heard about this museum for years and when we took Mattie to the Los Angeles Zoo, we would pass it on the way. Learning about the history of California, the Gold Rush, the trans-intercontinental railroad, and the diversity of all the people involved in the State's development is fascinating. The Autry Museum does a wonderful job at transporting you back in time. It isn't like any other museum I have visited, mainly because in each room, there is a theme and each item on display builds off of the next item right near it, forming a complete story and picture. I went to high school in California, yet I have to admit this is not a part of history I feel like I ever learned. Somehow the Museum brought the American West alive for me and made it much more tangible and understandable. 

When you enter the Museum, you are struck by wall sized murals, created by the Walt Disney Studios. These murals depict the various time periods in California's illustrious development. 

The Autry National Center of the American West was co-founded by legendary recording and movie star Gene Autry and his wife Jackie, along with country singer and actor Monte Hale and his wife Joanne. The opening of the Autry in 1988 realized Gene Autry’s dream to build a museum to exhibit and interpret the heritage of the West and show how it has influenced the United States and the world. Autry’s career spanned some sixty years in the entertainment industry, and he was also a broadcast executive and Major League Baseball owner. But Autry’s idea of the West was more than just about entertainment. He saw it as a melting pot of American history where many cultures met, competed, and influenced each other, helping to shape the country’s vision of itself then and now.

This maybe one of the most remarkable pieces on display. It is hard to choose a favorite, but this would be mine. This stagecoach was manufactured by Abbott and Downing Company with ironwork by James G. Chesley, in the 1850s. This stagecoach is probably the only known surviving coach from the California Stage Company, the Far West’s earliest major stage line. Founded in 1854, the California Stage Company quickly took over the majority of routes within California, eventually extending northward to Portland and eastward to Nevada’s Comstock lode. It was operated by veteran stage men James Birch and Frank Stevens. Rounded body suspended above undercarriage, or gears, by leather throughbraces. Two leather straps between body and gears check lateral movement. Basically there were NO springs and the movement was more like the gentle movement of a cradle. The gears and wheels were intended for hard service over long distances. Believe it or not there were three rows of seats inside, capable of holding up to nine people with additional seats mounted upon the roof extending passenger capacity to eighteen. This stagecoach is probably the oldest surviving Concord coach to have seen service in the West.

We took a two and a half hour guided tour today. The docent was incredible. A former chemistry teacher, who taught himself California history. He clearly loves his job and it showed as he brought each of the museum rooms to life for us. The Community Gallery interpreted the West through the lens of the racial, ethnic, and religious communities important to Western development between 1885 and 1895. Using 1890 census data, the gallery compared and contrasted family and daily life, education, religious beliefs, politics, and work among eight different communities. The gallery also included an area illustrating the saloon as the social center of many Western communities. Highlights of the Community Gallery included a nineteenth-century fire engine, an Osage wedding dress, a child’s vaquero outfit, a Chinese immigration certificate, and an ornate mail-order bar. Within the Community Gallery was a section on Law and Order in the nineteenth-century West. Highlights here include Billy the Kid's rifle and items associated with lawman Pat Garrett.

This bar counter and tobacco cabinet were carved mahogany, glass and brass fittings, made by Brunswick Balke-Collender Co., in the Los Angeles style. Formerly installed in the Stockman Bar in Wibaux, Montana, late 1800s. It is an original!!! Notice all the glass bottles on display. As was explained to us, mixologists were very popular in the 1800s. These bartenders could create just about any drink combination possible. Seems to me not much has changed in several centuries. 

Right next to the bar was this Edison Multiphone. Or perhaps we would refer to it as a juke box today. These coin operated amusement devices were popular in saloons at the turn of the century. It offered a choice of 24 cylinder recordings simply by turning a crank. By having patrons pay for their entertainment, saloon keepers saved money on having to hire musicians. 

This is a painting of a Vaquero, a Spanish cowboy. Looks a bit different from how we imagine a cowboy to be, no?!!! I learned today that horses and cattle came from Spain (they are not native at all to North America) and Spanish speaking people brought herding traditions and horsemanship to what would become the home of the American cowboy. Americans entering California and Texas were intrigued with the techniques and style of the Vaqueros and from there the birth of the American cowboy evolved.

The Cowboy Gallery detailed the evolution of the cowboy from the open-range era on the Texas grasslands through the modern ranching period of the late twentieth century. As the most iconic image of the American West, the cowboy represents the fusion of Anglo and Spanish colonial traditions within the region, and the gallery presents different traditions ranging from the Southwestern vaquero to the northern cowboy. In addition, the gallery contrasts the different forums of "cowboying," including the sport of rodeo and the working ranch. 

After our tour, we went to see the special exhibit entitled, Jews in the Los Angeles Mosaic. This special collection explored how a growing Jewish community settled, prospered, and helped shape the economy, politics, and culture of a city—and how the diversity and dynamism of Los Angeles have transformed the local Jewish community for the past 160 years.

This groundbreaking exhibition protrays the story of neighborhoods like Boyle Heights and Fairfax, people like Billy Wilder, Max Factor, and Frank Gehry, and lynchpin industries like the movies and suburban land development. I learned that Jewish people helped change the region by recruiting the Brooklyn Dodgers, inventing the Barbie doll, and joining other Angelenos in electing the city’s first African American mayor. Featured were more than 150 stories, documents, objects, and images of family, community, and society.

I hope you enjoyed my tour through the Gene Autry Museum. It is definitely worth visiting and now that I saw it, I think Mattie would have appreciated aspects of this Museum. Bordering this Museum is the famous Travel Town Museum (http://www.traveltown.org/). This is a spot we took Mattie to every time he visited Los Angeles. It is an outdoor museum with trains on display, trains with a history to tell. Kids gravitate to this museum because you can board every train and run around. Funny how the sights of a place you used to visit brings back all sorts of memories. I did not even go into Travel Town today, I simply passed it. Most parents have memories of their children from when they were little, and parents may look back at these memories and reflect on the precious time that has gone by. For parents who lost a child to cancer, these memories are not the same for us. Our children are no longer alive and therefore we can't take comfort in knowing and seeing that our children are growing and evolving. For me Mattie will always be 7 years old, and in so many ways memories are needed and yet bittersweet all at the same time.