Saturday, February 6, 2010

Saturday, February 6, 2010

Tonight's picture was taken at Deerfield Beach, FL in December of 2006. Deerfield Beach is a wonderful place for families, and along with my parents, we visited there with Mattie three years in a row. Mattie simply loved digging in the sand and building all sorts of structures. In fact, Peter and Mattie would transform the beach. They would spend HOURS designing, and by the time they were finished many beachgoers would feel the need to stop by and acknowledge their work. Mattie always took pride in his creations. In this particular picture you can see some found objects (like bottle caps for example) that Mattie picked up along the beach to use as decorations for his sand city! Mattie loved building with Peter and then decorating the structure with me.
Poem of the day: I'm an Angel Now by Janice Grogen

One night I cried to Jesus as I sat beneath a tree

I looked into the open sky and hoped he'd answer me...

I'm lost dear Lord, I've traveled far, but still I seem to roam

Please lead me Lord and light the way, I need to get back home...

I told him of my burdens, and of the sadness in my heart

That from his gracious love, I'd never felt so far apart...

Why did you take my child, dear Lord, I cannot understand

No longer can I see his face or hold his tiny hand....

I'm angry Lord, I'm missing him, I'm drowning in my sorrow

Please help to heal my yesterday and face each new tomorrow...

It was then I heard his gentle voice and felt his presence near

How I wanted so to hold him as I cried another tear...
He said, "Mommy, I'm an angel now my spirit will be free
I'm an angel now in heaven so please don't cry for me
I was chosen by the Lord above and now I'm in his care
When you need me look inside your heart I promise to be there.

No one can ever take away our bond with one another

For I'll always be your precious child, as you'll always be my mother
So if you cannot find your way or the road to home seems far
Just look up to the heavens--and I'll be your guiding star!"
He said, "Mommy, I'm an angel now my spirit will be free,
I'm an angel now in heaven, so please don't cry for me."

I am very touched by the e-mails I have been receiving from our Team Mattie supporters since I have been away in Los Angeles. Many of our friends who live in Washington, DC are being inundated with SNOW! Yet despite being home bound and shoveling snow, our friends are writing to me, and checking in to see that I am okay and trying to enjoy my time away. What humbles me about this is that instead of being envious that I have escaped the snow, I truly feel that others are happy for me. Happy that I am trying to find a way to escape the pain for just a few days. I so appreciate this level of concern and support and I feel the need to say THANK YOU! I received several photos today of the snow through e-mail, and it is nice to see what is happening in DC, without actually being there.Thank you for thinking of us and making us feel missed.

I was simply exhausted last night, and despite only a three hour time difference between Washington, DC and Los Angeles, my body clock was all thrown off. I went to bed very early last night, and while sleeping I was jolted awake by rumbling. At first I panicked that it was an earthquake, but then quickly realized it was just a very bad thunder storm. My parents and I had a lovely day together filled with good food and lots of conversation. My parents took me to a brand new outdoor mall. My mom told me that she thought Mattie would have loved this mall. I was perplexed by this statement because Mattie HATED shopping. However, once I saw the mall, I quickly understood. This outdoor mall was beautiful, had a playground, and an amazing fountain. The fountain performed a water show timed to music. Mattie would have absolutely loved it. Not to mention the fact that there was an old fashioned trolley train that gave shoppers a ride around the outdoor space. All I could think of is I wish every mall was like this, because if it were, I may have actually been able to shop with Mattie when he was alive. Our typical indoor malls were a sensory nightmare for Mattie, and many times he landed up melting down in them. Needless to say after several meltdowns, I quickly learned malls were NOT a good place to visit.

My parents introduced me to a tearoom they enjoy visiting, and we sat down had tea and enjoyed chatting. In the midst of our outings, we also reflected on the beauty of Mattie and how much we miss him. In a way, my parents feel the loss of Mattie to a similar degree as Peter and I. Not that I am happy about this, but it certainly makes me appreciate or at least it validates my intense feelings. I sometimes have to stand back and realize they are grieving the loss of Mattie, but also the major loss for me. Though I am an adult, I am still their child, and no parent wants to see their child suffering or in such great pain. Somehow actually being with my parents allows me to see these feelings in a way that distance communication just can't capture.

As Sunday approaches, I am scheduled to head home on a flight. A part of me wonders whether the plane will actually take off because of the blizzard conditions on the East Coast. However, I realize there is no real reason for me to run back home. I don't have the responsibilities I once did, and I also am aware that if I do head home, I will be surrounded at home by snow and potentially isolated with Mattie's things and memories.

I have chatted back and forth with Peter today, who attended his friend's wedding. I wanted to share two VERY different pictures with you tonight. The picture on the left was taken by Peter. While he was talking to me on the phone he commented on his views of the ocean. I asked him to send me a picture, and this is the one I received. It looks simply beautiful from my vantage point. The picture on the right was taken by Tad. My fellow nature lover. This is a sight he captured outside his window today. Lots of snow and a beautiful Cardinal stopping by for a visit.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It's nice to see these happy pictures of Mattie and especially this nice sunny day when it is anything but here in Washington DC. It really was fortunate that you were able to change seats and sit with Ann. I have seen these overbooked flights many time and sometimes things get to be pretty unpleasant so I think you have a angel watching over you. I am glad that both you and Peter are off doing things elsewhere, because being trapped in the house by this weather is not good for anyone and it is especially bad when you need emotional support of friends and/or family. I hope that your visit with your parents is going well and that you are sharing the events in your life and reconnecting. I hope Peter is having a good time as well and that when you come back together you have some good things to share with each other."

The second message is from my colleague and friend, Denise. Denise wrote, "Glad to hear that you and Peter arrived safely at your destinations. I hope you both are able to find respite from your pain during your travels. I wanted to make an observation about your mom's story from earlier in the week. Of course it makes the most sense to see the rainbow as the sign from Mattie (and I agree with your mom...Mattie would certainly choose something big, bright, colorful and awesome like a rainbow as his sign). I might take it a step further, though. Your mom said LA hasn't seen significant rainfall in years, and yet this week they've endured "3 to 5 inches of rain almost every day with fierce winds, tornadoes, water spouts, lightning, thunder and hail." I submit that this weather anomaly is also part of Mattie's sign to your mom, signifying the horrific 13-months he/you all suffered on Earth before he was able to experience the comfort and love that is heaven (signified by his rainbow on Tuesday). I've always been one to look for deeper meaning in signs and symbols, so I can't help but think Mattie wanted to illustrate to your mom that even though life was really difficult for him (and everyone) for those 13 months, he is no longer suffering, and is indeed happy. Maybe it's also his way of showing you that although your pain is in the forefront of your life now, eventually it will feel less raw than it does now. Eventually, the memories of him will bring joy and not sadness (a rainbow after the storm, so to speak). I am continuing to pray for you and your family every day."

Friday, February 5, 2010

Friday, February 5, 2010

Tonight's photo was taken in December of 2006 when Mattie was four years old. Mattie went on a trip with us and my parents to Ft. Lauderdale to celebrate the New Year. Mattie loved everything about Ft. Lauderdale from its drawbridges to all its canals and boats. Mattie looked forward to taking a walk each afternoon on our trip, because he wanted to watch the mechanics of the drawbridges. This fascinated him and of course we were all thrilled to have found something that stimulated and entertained Mattie at the same time. I am happy Mattie went on many trips in his short life and I am happy we can reflect on these memories.

Poem of the day: Pennies from Heaven


I found a penny today
Just laying on the ground
But it is not just a penny
This little coin I've found...
Found pennies come from heaven
That's what my grandpa once told me
He said angels toss them down
Oh how I loved that story...
He said when an angel misses you
They toss a penny down
Sometimes just to cheer you up
And make a smile out of your frown...
So don't pass by that penny
When you are feeling blue
It may be a penny from heaven
That an angel has tossed to you.

I have never heard of this story, "pennies from heaven." But the ironic part is I have seen many pennies on the ground recently. It would be very special to think that my little angel tossed them down for me to find. It has given me a whole new way of looking at a found penny.

Peter and I have travelled independently before for work reasons. However, in the history of our marriage we never took separate vacations or personal trips. So today was a first. Both of us needed the chance to get away from our daily pain, so we embraced these opportunities. Nonetheless, Peter and I both acknowledge that despite our pain, we are important to each other, and appreciate the reality for a healthy break from the stresses of our daily memories and routine.

I am happy to report that Peter and I both landed safely. Peter is in West Palm Beach and it sounds like he is enjoying the 70 degree temperatures! I was actually so happy to hear this, and even happier to hear that he was connecting with all of his Arthur Andersen buddies. Peter needs this change of scenery and the time to socially connect with friends! This brings me great happiness to hear his energy.

Ann and I flew to Los Angeles. The flight was oversold and initially we weren't sitting together. But that did not stop us from making a request. We went right up to the desk and asked for two seats together. I expected the airline representative to laugh at us, because this flight was oversold, and had 20 people on standby. But somehow, she was able to accommodate us, which made the flight go much faster. We literally talked for five hours straight, about all sorts of things. I realize that in Washington, DC there is a huge winter storm underway, and I can appreciate being away from the snow, but I must say I am disappointed that it is in the 50s in LA and raining. Certainly better than 30 inches of snow, so I am trying to put it into perspective.

When we landed in LA, and disembarked from the plane, I was in a terminal of the airport I did not recognize. I immediately felt better about this somehow, because this was a part of the airport I never travelled with Mattie. I missed my traveling buddy today, and I am sure as my parents greeted me at the airport, they too missed Mattie's presence. He isn't physically with me, but he is here in spirit. I had a nice time this afternoon chatting with my parents. We talked throughout the car trip home, and then went out for an early dinner. We visited one of Mattie's favorite restaurants. What he liked about this restaurant was the fountain in its outdoor patio. As we passed the fountain today, I couldn't help but think of Mattie and remember all the times he played with the water. It is hard to believe that almost two years ago, he was standing right by this fountain.
I am enjoying this time to connect with my parents and filling them in on many of the things in my life that are not blog worthy. There is nothing like face to face conversation. In the midst of my travels, it is still very special to receive e-mails from my friends today. Alison, a vital leader in Team Mattie, sent me a message today to check in. She is keeping me posted on the snow and then let me know that her son, Paul, a friend of Mattie's, decided to wear his Mattie Miracle walk t-shirt today. Paul wanted to wear the shirt because he felt Mattie "would have wanted to play in the snow!" I am truly touched how Mattie's memory is being kept alive and how Paul uses the shirt to be connected to his buddy. Simply lovely!

My mom sent me this story earlier in the week. I thought tonight would be the perfect time to share it with you. I hope you enjoy it as much as I did.
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The Rainbow Connection by Virginia R. Sardi


I have an analytical nature and have never shown any inclination to “read the tea leaves” as a guide to interpreting events in life. Lately my thinking has undergone a profound change in that I find deeper meaning in experiences that I once found coincidental and dismissed as fortuitous, without searching for a deeper meaning. Now, I feel that by connecting the dots and opening my mind to the possibilities that exist beyond the five senses, there is a spiritual message to be found whose meaning when deciphered is sent deliberately from a loved one who has passed on from this life.

On Saturday, while in church, I prayed that God would give me a sign that Mattie was happy in heaven. It would mean so much to me to have that consolation after his terrible ordeal here on earth during the final days of his life. Here is what happened and how the week has gone so far. We have not had rain in California for several years. Yes, we’ve had a few drops every now and then, but no significant rainfall. This week has changed all that. We have had rainstorms dumping 3to 5 inches of rain almost every day with fierce winds, tornadoes, water spouts, lightning, thunder and hail. Positively unheard of weather but hey, this is California. Everything that happens here is big and noteworthy! I’ve often said that even though we do not have the four traditional seasons like other parts of the country, we have the seasons of earthquakes, fires, mud slides and floods. Mauro and I were experiencing cabin fever after a long stint at home so after one of these terrible storms let up a little bit, we decided to go our favorite Russian tea room near our house. Just as we were about to park the car, the sun came out and lo and behold, there was a glorious rainbow, brilliant and extraordinary hanging over the foothills of Burbank. I have never seen one in California and I have lived here 25 years. I was excited, got out of the car and stood there in amazement. If Mattie were to give me a sign from heaven, would he not choose something big, bright, colorful and awesome like a rainbow? He always loved nature; the sun, the moon, the stars and the planets. I asked for a sign on Saturday and got a rainbow on Tuesday! My heart would like to think that Mattie sent that rainbow directly to me but my mind has found a more plausible explanation for this truly remarkable event after days of wet, dreary, gray and gloomy days of unending torrential rain. The miracle lies in Mattie’s earthly life and his profound ability to affect people and give them the gift of seeing through his eyes. Watching that rainbow reminded me of the awesome power of his imagination to transform ordinary events into moments to remember and, I realized, he still had the power to do that through me because I am forever changed because of him.

We all know the power of Mattie to communicate love and hope through having connected with him in life and how he fought and lost his battle with cancer that became the impetus for bringing people together on a mission to cure pediatric cancer, a noble cause propelled by witnessing his courage and strength in the face of death. Mattie’s spirit will continue to lead us on in search of a better tomorrow for children stricken with pediatric cancer if we but remember that he is the rainbow connection to life that lives on in all of us who were lucky enough to have been touched by him while he was alive!
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Animals are much more open and sensitive than we are so when Patches behaves in a way that is absolutely not her normal, something is definitely going on. I agree with you that it was likely Mattie's spirit with you in the car, comforting her, especially if you felt him too. I see no reason why that should not be so. I can imagine how much heartache it brought you when you opened that luggage that you packed when you left the hospital that day almost five months ago. Perhaps instead of burning your hospital clothing, you could wash it and give it away and hopefully create a good deed with it in Mattie's memory. I wish you a safe and uneventful flight out to see your parents and I hope you find comfort in each others' presence."

Thursday, February 4, 2010

Thursday, February 4, 2010

Tonight's pictures were taken in April 2007, Mattie was five years old. It was our tradition each April to take Mattie to the US Botanical Gardens in Washington, DC. April is when the azaleas are in full bloom. It is a spectacular sight, that goes on for miles, along a pretty tree lined trail. This beauty seemed to be well timed with Mattie's birthday, as if the flowers were screaming out in celebration of the day. Though I typically post one picture a night, I posted two tonight because I wanted to show you the amazing colors that surrounded us. The colors are almost too perfect, only of which can be created by nature. Based on how I have been feeling the past couple of days, I felt the need to locate pictures with Mattie and I together. Somehow I needed to see our closeness, and thank goodness there are photos and videos to pull from in order to keep these memories alive and real.  

Poem of the day: You will never be forgotten by Jessica Andrews

I'll always see your face

The corner of your smile

And all the little things no one will ever know
Like it was yesterday, won't ever fade away
Goodbye is just a word I'll never say.
You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You're more than just a memory
Oh you will never be forgotten.
I can't hold your hand
Or look into your eyes
And when I talk to you
It just echoes in my mind
But if hearts are made of dust
And we fell from the stars
I look up tonight and know just where you are
You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You're more than just a memory
Oh you will never be forgotten.
And the world just keeps on going
It has no way of knowing that you're gone
You will never be forgotten
A million days could pass us by
But what is time but just a dream
Oh I still feel you here with me
You're more than just a memory
Oh you will never be forgotten.

As the poem says, "I still feel you here with me." This is a powerful line, and until today, I may have only read this line but not really felt its significance. Today, I had several moments where I actually felt Mattie with me. I had to take Patches, our calico cat, to the vet this morning. She is being boarded there for the next several weeks. For my readers who are cat fans, DO NOT feel bad for Patches. She got a greeting from all the people at the vet today, it was so amazing I thought I was in the presence of a celebrity. This particular vet not only sent Peter and I cards while Mattie was ill, but spoiled Patches royally while she stayed there for over a year. While there, Patches has free rein to walk around the facility, and also gets to play with all the care workers. They were thrilled to have her back!

I placed Patches in her cat travel box without a problem, and then when I placed her in my car, I put her box in the back seat behind me, and seat belted her in. It was the simple act of placing her behind me and buckling her into the car, that triggered something in my head. As I was driving, I was literally confused. I kept thinking that Mattie was behind me and not Patches. I can't quite explain this, I naturally know Mattie is gone, but there was a presence in the car with me. Typically Patches is VERY vocal in car rides, screams the whole way to the vet. But not today, she was very quiet, and I couldn't help but wonder why. In the past, Mattie would sit with her in the back and try to distract her to calm her down. Patches behavior only confirmed my feelings about Mattie being with us today. In any case, all of this was very emotional for me, and while driving to the vet, I was crying. In fact, one pedestrian looked at me while he was crossing the street, and simply smiled at me while I waited for him to pass by. It was almost as if he wanted to tell me whatever I was crying about, it would be okay. Little does he know! After I dropped off Patches however, the feeling within the car changed, whatever I experienced was gone.

This afternoon, I had the opportunity to see Mary, Ann's mom. Mary wasn't feeling well and really needed to rest. Despite not being herself, Mary always reflects on two things with me. She admires Mattie's jewelry and always asks about my mom. It is almost like my personal checks to see just how she is doing in a given day. At some point today, Ann and I went shopping together. She was looking for a gift or two, and in the midst of this we also tried on clothes. It seems like ages since I did this with a friend, honestly the only time I can recall doing this was in college. Which I assure you was a long time ago. It is ironic how certain activities can bring you back in time.

When I got home later in the day, I figured I better start packing for my weekend trip to Los Angeles.  In a way, it will be strange coming off the plane in LA with just myself. There will be no Mattie in tow. Mattie loved airplane adventures and going to LA, so a part of me in sad to be traveling without him, and I am sure my parents are also trying to find their way with these feelings as well.

I am not sure why I did not realize how difficult a day it was going to be. The piece of luggage I needed to pack happens to be the suitcase that I actually used for Mattie and I throughout his year of treatment at Georgetown. Some of you may recall that I haven't touched that bag. I never unpacked it, and just as I sealed it on September 8 in the hospital, this is how it looked when I opened it today. Totally overwhelming! Based on how I packed the bag, you can tell the kind of chaos and turmoil I was in on September 8, as Peter and I were coming home from the hospital right after Mattie died. Inside the bag was of course Mattie's clothes, cute socks, his toothbrush, an angel ornament (which I am leaving in the bag), and a ton of medical supplies that I always traveled around with. As I removed each item, I quickly began to see that this was too much! In fact, when I told Karen about all that was transpiring, she suggested I leave the luggage as is, and buy another bag. She and I are both attached to objects and they serve as reminders to us about events and people. I did manage to get through the afternoon, but as you can imagine Mattie's things come with memories, and his fragrance it attached to everything. However, I can safely tell you that all my hospital clothes..... I would love to burn! I never want to wear them again, and can't wait to get rid of them. They only bring back our battle with cancer, in fact while in the hospital I think I even referred to them as my uniform!

In the midst of my emotional outbursts today, Ann called periodically. Sometimes she found me whole, and at other times, I was teary. In the midst of all these moments, I received a beautiful e-mail from Katie, Zachary's mom. Zachary was Mattie's closest preschool friend. In fact, Zachary and Mattie to some extent were like soul mates. They had an instant and intense rapport with each other in preschool. Though they made other friends along the way, there was something different about their bond. Katie told me in her e-mail that Zachary still talks about Mattie each day, and as I told her that this proves to me that some bonds transcend space and time. The bond is everlasting, and I find just like in preschool, I continue to learn from Zachary. I sense that Zachary is concerned about me, since he knows what it feels like to lose Mattie. Katie told me Zachary wants to give me a hug and check in on me. Zachary's thoughtfulness and compassion gave me pause, but then again, I think Zachary's passion is one of the things that Mattie admired in his buddy. Though I would prefer that Zachary and I had Mattie in our lives, I do acknowledge these special moments when I can see Mattie's memory alive and well within his friends.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am a lot like you and I tend to plan things way in advance. I too was of the "no long flights for short visits" club until my Dad passed away and then I realized that the most precious thing I had was time with someone. Take a book, some needlework, talk to Ann on the flights and know that the time you will spend with your parents is precious and well worth the trouble. I know that they miss Mattie deeply and it is important that they not feel they have "lost" you as well. I am glad you are planning this getaway with Peter and your parents; it is not running away, you can't run from grief but perhaps some new things to see and do will help you balance your feelings. As for the comments about having a layer stripped away, I think it is realization on another level that time is limited and precious and to waste it in "small talk" and unimportant things is the wrong thing to do. As I practice today and search for patience with myself (one of my biggest shortcomings), I will send my positive energy to you to encourage you to do the same."

The second message is from a colleague of mine. Susan knows quite well that I do not like to fly, and she wrote to me today since I am headed on a plane tomorrow. Susan wrote, "I know I haven't written to you in many months, but I want you to know that I am still an avid daily blog reader. It's become habit for me to start my day with the blog. It certainly helps to put everything into perspective, and I remain a steadfast supporter for you and Peter as you navigate your way through these days, weeks, and months. Do you remember my story about turbulence on an airplane? I remember us having this conversation several years ago during one of our meetings when you expressed some anxiety over air travel. My story was that air turbulence is caused by angels who are so excited to accompany us on our travels that sometimes they just get too rambunctious and hit the bottom or sides of the plane. Although I certainly don't wish you any turbulence on your flight, do you suppose its possible that there may be a very special, personal angel accompanying you on this trip? We may be better off if we choose to believe in stories that assist us in growing through the turbulence of life. Happy and safe travels, Vicki, and the same to Peter."

Wednesday, February 3, 2010

Wednesday, February 3, 2010

Tonight's picture was taken in August 2007, in San Diego. Seeing my parents in August became a family tradition. We would start and end our trip in Los Angeles, but in between we would visit San Diego. Mattie loved San Diego and all its attractions (SeaWorld, Touring the USS Midway Aircraft Carrier, and OF COURSE LEGOLAND!). In tonight's picture, you can see Mattie cuddling up with me because he had just gotten out of the pool, and was looking to get warm.

Poem of the day: Moments to Memories by Autumn Ater

My precious sweet child
Up in heaven above
How I miss your lovely smile
You are my forever love
To have one of such beauty
How happy God must be
The joy and love you bring
For all those there to see
My memories here are cherished
From moments I hold deep
Within my heart tucked away
Where tears are mine to weep
Yet I know God does catch them
And put them in a special place
Where one day He will reveal to me
His purpose and His grace
I miss you my sweet child
Your face I long to touch
I never knew it would be so hard
To love someone, so much
But God blessed me with an angel
Though human in disguise
Because he is almighty
Loving, true and wise
So for now I have these moments
That have turned to memories
And I will look forward to the day
When we share Eternity!

The last time I left Washington, DC and boarded a plane for a trip was in July 2008. I traveled to attend a conference I planned with my Association in San Diego. I left for San Diego knowing that Mattie's arm did hurt, but remember I thought he injured it in tennis camp. Needless to say, my body was in San Diego, but my head was in Washington, DC worrying about Mattie's arm. As a mom I had a sixth sense that something was not right! When I got back from my trip, Mattie's arm pain was even worse and I immediately took him to the doctor. It was at that point we learned that he had Osteosarcoma.  Since Mattie's illness and death, I have been very hesitant to leave home. I know several of our Team Mattie supporters encouraged us to go away for Christmas, but in the end, that would not have been a good decision for us. We weren't ready to even think in those terms. Not that we are now, but an opportunity presented itself, and Peter and I are both boarding a plane on Friday and heading in two different directions. Peter is headed to Florida for the weekend to attend the wedding of a very close friend. Though I am there in spirit and am very happy for the couple, I know I am unable to handle the whole celebration around a wedding at this time. In fact, happy circumstances can make me very sad and depressed.

While Peter is going to Florida, I am leaving for California to visit my parents for the weekend. This type of trip is VERY unlike me. The flight to California is LONG and I don't like flying to begin with. However, Ann is headed to California to visit her aunt who is dying. She asked if I wanted to fly with her back and forth, and at the same time have the chance to visit with my parents, who I haven't seen since October. At the time when she asked me to do this, I couldn't even believe I was considering it. I am a very planned individual, and taking a long flight to California for two days doesn't sound reasonable or even logical. This is certainly how I would have thought about it prior to Mattie's illness and death. Now I view it more as an opportunity to connect with my parents, and it really doesn't matter what the logistics are. That may not sound earth shattering to you, but based on my personality, this is a major perspective change. Living life so measured and always doing the logical thing, is not only no fun, but it also prevents one from experiencing unexpected joys. So on Friday and Saturday, I will be writing to you from Los Angeles. I will see how this new perspective actually works for me!

I spent a good portion of the morning, trying to get ready for our trips. In addition, Peter and I are joining my parents on a week long cruise of the Caribbean, beginning on Valentine's day. So we have travel in our future for the next two weeks. It is funny, when my parents told me about this cruise, my dad's first comment to me was, "you will have access to the internet to write the blog." That made me laugh! My parents want us to get away, and part of me is hoping that leaving our home for this week will be therapeutic. The Caribbean definitely operates at a different pace and has beautiful weather. Now my internal joke is.... I may just stay on an island and leave the pain of our home and Washington, DC behind forever. Naturally I know this pain lies within me, and it isn't really location dependent. Nonetheless, in down days I do dream of happier places.

This afternoon, I had the opportunity to spend time with Ann and her children, who were home because of a snow day. Only in Washington, DC, could there be NO snow accumulation, and schools still be cancelled! It is hysterical. Her children had friends over, and their house was filled with a lot of life. We played board games, got to watch playdoh creations, and the list goes on. This is the energy that can only be generated by young minds! But there are times I can only absorb so much of this energy and life. Then I know I need to remove myself, which I have come to accept as a healthy thing. I don't deny or prevent these opportunities, but I also have to respect my needs and feelings.

I received this beautiful Cardinal photo today from Tad. Mattie and I loved Cardinals too, and we used to admire all the Cardinals that visited his school's campus. In addition to the photo, Tad sent me a very lovely e-mail. I realized something about myself from his message. Or maybe about all of us who have experienced the untimely death of a loved one. Such a death profoundly changes you, so much so, that I realize my conversations (and those of others who share similar losses) may appear more intense, raw, or honest to those around me who haven't survived such a trauma. Experiencing cancer and Mattie's death has almost stripped a layer from my skin. It has made me more vulnerable, more sensitive, and far more in tuned to the fragility of life.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I also believe that those who were close to us, a part of us always, try to contact us the best way they can. In Mattie's case, I think you are right, he reaches out to you via nature, the birds, the moon, the breeze in his wind chimes. I can almost see Mattie with his own set of wings playing tag with the blue jays. I do have to tell you I agree totally with Kristen, that any answer you want to give is right. You should not feel sorry or guilty for what you say with respect to these sorts of questions. Although I am one who is reluctant to share with those I do not know; perhaps as Emily said, this particular person needed a reminder of how fragile and precious life is and what is truly important. Perhaps you did a mitzvah (a good deed) without even knowing it. I hope you have a peaceful day today; you are in my thoughts and prayers."

Tuesday, February 2, 2010

Tuesday, February 2, 2010 -- Mattie died 21 weeks ago today!

Tonight's picture was taken when Mattie was 10 months old. He is pictured in one of his favorite modes of locomotion, his walker (aka "tot wheels!"). Mattie couldn't walk or crawl by this point, yet in his walker, he literally could fly around the first floor of our home. If I let him outside, I would literally have to run after him to keep up! Got to love that smile. Can you guess who took this picture?!


Poem of the day: The Question by Charlie Brown (Thank you Charlie for capturing the sentiments I expressed yesterday so beautifully!)

Today was a day like any other
One more when I question
Am I still a mother?
Do you have children? Someone asked me today
And I was caught, what could I say?
I could not say no, I would not lie
You're my beloved son, I will not deny
If I said yes, I do, would how old be asked?
And so on and on until my grief was unmasked.
So this time I said, yes, a son but he's gone
Cancer took him and I am alone
I heard myself say it and could hardly believe
That those words were said, and I instantly grieved
That an innocent question, once answered with ease
I pray no one asks, if God hears my pleas
It was all too much, so I hurried home
And tried to deal with my grief on my own
But good friends reached out and helped me endure
The loss of your presence, for which there's no cure
Today was tough and the battle was hard
My heart and my mind bear many scars
But I will keep trying, it is what I must do
If I am to find a way to live without you.

Another week has flown by, and we are greeted with yet another Tuesday. This Tuesday signifies the 21st week since Mattie died. Yesterday was clearly a challenging day, I figured today couldn't possibly be worse. I spent a good portion of the day at Ann's house, working on a project. It was peaceful at her house, and I had the uninterrupted time to work on the construction of a costume for one of her daughters. As I sat for several hours and sewed in silence, which was actually very soothing, I suddenly tuned into a sound that was very familiar. I have heard this noise many times in my life. I really believe I experienced a sign from nature today. It made me pause, think of Mattie and simply wonder if he was trying to communicate to me. To tell me he is out there and will always be with me.

I could hear birds outside Ann's house. But I knew I recognized this particular bird call. It was the call of Blue Jays. I rarely see Blue Jays in our area, they are not as common here as they are in the North East. In fact, I have spent a great deal of time at Ann's house, and frankly can't recall ever hearing or seeing a Blue Jay before today!

When Mattie would visit Peter's parents in Boston, Mattie and his grandmother would watch for Blue Jays in their backyard. Peter's mother helped Mattie learn the call of a Blue Jay, and this knowledge stuck with him, the Blue Jay became one of Mattie's favorite birds. As I sat sewing, there was so much bird traffic and song, that I couldn't help but stop and take notice. It was almost as if the birds were trying to get my attention, and it worked! I listened and realized I was listening to Blue Jays. I immediately felt as if a force greater than I can actually understand, perhaps my spiritual connection to Mattie, was trying to tell me something. I was not sure how to process and understand my Blue Jay encounter, and did not speak about it all day.

I had lunch with Ann and I did not mention it there either. But when I got home this afternoon, I sent Ann a message. I asked her whether she noticed Blue Jays in her front yard before. I am sure this seemed like an odd question, but she answered it and said rarely has she had a Blue Jay sighting, but today she couldn't help but notice their presence. I then told her about Mattie and his love for Blue Jays. Basically I think this sign from nature gave us pause. I deeply would like to believe Mattie is out there, watching us, and is happy and healthy and able to listen and play alongside these wonderful Blue Jays now.

I appreciated the e-mails of support I received today. The power of social support is immeasurable. I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I am thinking of you today and can't help but feel your pain. It is palpable. I can't tell you in the last several months how many people have asked if I have children, or even "why not?" When I've said no. Obviously, with me starting a new job...it is a very typical "small-talk" question..."do you have children?" And all I can say...is that people just don't understand. And some people...some people never will. First, though, I can tell you that however you choose to answer that question...your answer is correct. It is right. And if you argue with me that perhaps it isn't 'right.' I will argue back that it was certainly right for the time. Even if you feel "guilty" for "shocking" someone, there should be no guilt in this. I can imagine that you have just taught a very difficult lesson to those who ask "well meaning questions" and I can almost guarantee that three women will not be asking a similar question to someone whose life they know little about for quite some time, if ever. Please don't feel your reaction is wrong. It can never be wrong because it is based on feelings which you, and only you, own. Thinking of you both. Much love, on this Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "I am saddened by what the results of an innocent question from a store clerk could do. All I can offer here is what I have read and been told by others who have been in similar positions. Sit down and decide what you want to say to different groups of people. First, there are people you don't know and are unlikely to ever have any sort of on going relationship with (these are the people that say, Hi, how are you? as a greeting but really don't know you nor have an interest in how you are and to who you would answer "fine" no matter if you had been given a month to live). Then there is another group, those you know but haven't spoken to, we call them the Christmas Card list. They are those you've known a long time but only see/hear from once or twice a year. And third, those you have a relationship with but who somehow managed to be in the Australian Outback for the past two years, out of touch with the world and who really need an in-depth answer. Maybe you have additional categories? Anyway, think about it, decide how much you wish to share (it is your life and you are entitled to privacy and not to share information) and then PRACTICE! Locking yourself away, stopping your life is an option but a very poor one. Immersing yourself in your grief for hours on end is not going to make you feel any less guilty in the long run, nor will it honor Mattie and his memory. He loved the outdoors, and creativity and his friends and family, so to honor him you should be including, not excluding those things from your life. Balance is the key here. Time alone to reflect, to develop some strength and then interactive productive time each day. Today as I practice, as I look for my internal balance, I will send my energy to you to help you in your search as well."
 
The third message is from our friend Emily. Emily was one of Mattie's favorite babysitters. Emily wrote, "I know it has been a while since I have last written, but I have not stopped reading the blog nor have I stopped thinking of you, Peter, and my Mattie. When I read your blog yesterday about how to respond to someone when they ask if you have a child, I noticed that you wrote that you were not filtering your words which is why you chose to say that you had a child but he died from cancer. I feel as though that was an honest, genuine and appropriate answer to that question- I believe that although your response may illicit a surprised/shocked/ saddened/frozen reaction from the person with whom you are speaking, I believe that it will ultimately have a positive affect on them. It is likely that your response will make them think about possibly their own children/grandchildren, or other children with whom they are close to- I think responding with such authenticity is courageous and brave of you and does not require a filter at all. When people ask questions they ideally should be prepared for whatever the response may be, and the responsibility ultimately does not lie within you to protect them from what may be a difficult thing to hear. I am unsure if your question was rhetorical or not, so if it was, I apologize for putting in my two cents- but either way, I want you to know that I do not think your response was anything but honest, authentic, strong and brave. On a side note, the other day Adam and I were organizing his neck ties, and we came across a tie I bought him a few years ago which has a beautiful illustration of a scene from The Lion King. It really had not much sentimental meaning when I bought it other than Adam really liked the Disney movie, but this time when we looked at it, we both looked at each other and talked about how it will forever remind us of Mattie....This is just one of many moments during my day when I think of Mattie and how deeply he touched my life. Thinking of you always..."

Monday, February 1, 2010

Monday, February 1, 2010

Tonight's picture was taken when Mattie was 14 months old. He wasn't walking yet, but he found his own way to scoot around on the floor, without ever crawling. I snapped a picture of him on that day back in June 2003, as he was migrating from our living room into our dining room. In the picture, you can see Mattie wearing one of my favorite outfits he had, his overalls with whales on them. In my opinion, Mattie happened to be lucky because every possible clothing color looked good on him!

Poem of the day: I Can Almost by Victoria Walker

I can almost see you smile
In the shadows of my mind,
Bringing to me the peace
I have struggled so hard to find.
I can almost hear your voice
Telling me "Be not saddened nor afraid,
Just remember all the good,
How we loved and laughed and played".
I can almost feel your touch
Wiping away my every tear
As I stand among my shattered dreams
Letting me know you [both] are still near.
I can almost hear you say,
"One day, you'll be here too.
Live the life you have before you
For we will be here, waiting to welcome you."


Today was NOT a good day! It started out fine, and I had every intention for it to be a productive day, since I spent most of the weekend home in bed feeling sick. Yet this morning an innocent comment from a store clerk, sent me spiraling down hill quickly, and it changed my outlook and feeling about the rest of the day. I am working on a project with Ann's daughter, and for the project I needed to go to a craft store and get a couple of items. As I was at this particular craft store, the lady working behind the counter began chatting with me. She asked me about my project, and then she showed me the project she was working on for her granddaughter. This lady was kind enough to help me in the store as well. While checking out, she asked me the innocent question..... do you have children? It was a natural question, after all, we were talking about a project for a child! However, believe it or not, since Mattie's death this is the first time someone has asked me such a question. Typically I would think through my answer, but my immediate response today was "yes I had a child, but he died of cancer." Naturally, this was NOT the response the lady was intending to hear, nor was it the response the two pregnant women in line with me expected to hear. All three people around me froze. Again, not my intention. Today I wasn't filtering things like I normally do, and though being honest may appear to be a healthy thing, my response made me very upset for the rest of the day.

After this response, I still had to continue shopping at other stores, but I felt as if I was on automatic pilot rather than really focusing on my mission. Throughout any given day, I always have three people who e-mail or text me to check in. By now, I would assume my readers can guess who these three people are: Peter, Ann, and Karen. I landed up telling them electronically what just transpired, and interestingly enough all three of them gave me completely different reactions to what I wrote. Needless to say, after my errands were done, I decided to go home and just stay home.

If you were me, how would you respond to the question..... do you have children? As I have been thinking about it all afternoon, I think my future responses will be situationally dependent. For the most part, I don't think people want or care to know that I had a child and he died of cancer. My loss, though the worst thing that happened in my life, is not the most important piece of news in other people's lives. This is a reality that I am coming to terms with slowly. But the question today, made me revisit every possible feeling I have about having Mattie, about Mattie developing cancer, and then of course Mattie dying. Yes I will always be Mattie's mom, but do I currently have children? The plain and simple answer is NO! When I arrived home from this shopping expedition, I saw a picture on our front hall table of Mattie and I together on Valentine's day at Georgetown Hospital. It is one my favorite pictures that Jenny, Mattie's art therapist, captured after Mattie made me a valentine's day box and cards. I looked at that picture for several minutes this afternoon, because without Mattie in my life, it almost feels like I have lived two lives. A life when I was a parent, and a life now without being Mattie's mom. What troubles me about this, is I have so much cancer stuff shoved into my head, that I can't always recall the simpler and more happier times. Or maybe these times seem like a lifetime ago, and that alone is upsetting.

I began feeling guilty today for trying to go out and function in the world. Guilty because maybe I should be spending my energy focusing on my feelings. I don't want to find myself a year from now reflecting back on how I dealt with grief and see only a picture of me doing tasks. I don't think I am doing this, since I am quite reflective and not a day goes by when I am not grappling with some emotion. Nonetheless, the feeling of surviving and trying to live, automatically makes me feel guilty on some level.

When I read Charlie's message to me today, she attached Martina McBride's song, Anyway. I have posted this song to the blog before, but I have attached the link again, in case you want to see it. I particularly like the written messages in the song. At the end of the music video, is the written message, "I want to be......." All I could think of today, after seeing this message was "I want to be OKAY!"

With the way I was feeling today, it was so nice to be treated to someone else cooking dinner tonight. Thank you Tamra for your kindness and support! Tamra not only cooked for us, but also gave me the recipe! This was a beautiful gift to receive on such a down day.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am very glad you got out yesterday and went to the ballet. Sometimes we feel better just by getting out and doing something like that. Yesterday's poem really struck a chord with me as well. Often people think of the survivor as the one who has gone through the disease and come out on the positive side of it; they forget that the people who travel with them are survivors too, regardless of the results. And when you are the survivor and the one you have battled so long and hard for doesn't make it; that makes survival very bittersweet. While you were at the ballet last night, I was at the Patriot Center for Trace Adkins and Martina McBride and what stayed with me was her song..."Anyway" and here is the link to the video. http://music.aol.com/video/anyway/martina-mcbride/1863728
Her lyrics..."God is great, but sometimes life ain't good. And when I pray, it doesn't always turn out like I think it should. But I do it anyway." really touched me. Isn't that often the way of it? How many prayers went out on Mattie's behalf and the results were not at all what we hoped, but we all did it anyway. And I continue to pray for you and Peter. May the joy you found in the ballet yesterday, stay with you today. I hold you gently in my thoughts."

Sunday, January 31, 2010

Sunday, January 31, 2010

Tonight's picture was taken when Mattie was 14 months old. Peter and I learned early on in Mattie's development that he preferred to be outside, in the fresh air, moving about, and observing nature. So we pretty much got to know every nature trail in the Washington, DC area. Mattie loved going to Great Falls, VA. Great Falls had so many things that interested Mattie, from the Falls themselves, to all the trees and bird life. When Mattie was younger, he did not care to be around loud noises or lots of people, which is why being one with nature was most likely so soothing for him. As you can see from the picture, Mattie is in his favorite form of transportation again... the back pack on Peter's back! Notice Mattie's smile in this picture! As Peter says you could always tell who took a picture of Mattie based on how Mattie was smiling. If Mattie was pictured with a big beaming smile on his face, most likely Peter tells me it was me snapping the picture. I am not sure how accurate this is, but Peter's recollection of this always makes me smile.


Poem of the day: My Mom is a Survivor by Kay Des'Ormeaux

My mom is a survivor, Or so I've heard it said.... But I can hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand...
She does not know I'm with her, to help her understand.
But like the sands on the beach, which never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise!

But through heaven's door I see...tears flowing from her eyes.
My mom tries to cope with death, to keep my memory alive...
But anyone who truly knows her...knows it's her way to survive.
As I watch over my surviving mom through heaven's open door.
I try to tell her angels protect me forevermore.
I know that does not help her, or ease the burden that she bears...
So if you get a chance go visit her...and show her that you care.
For no matter what she says...no matter what she feels...
My mom has a broken heart, that time will never heal.

I agree with this poem, I am definitely a survivor. Sometimes however being a survivor is almost, with an emphasis on almost, as challenging as having experienced the cancer and died from it myself. The bond between a parent and child is very strong and very deep, and when you see your child suffering, it is impossible as a parent not to feel this intense pain too. In a way, though chemotherapy was not coursing through my veins, Peter and I lived and breathed the treatments. In the end though, Mattie died, and we are left to survive and live on. Surviving and living on at times seems almost as complicated as battling cancer itself.

I am on the mend today, but was still running a fever this morning. I was determined to get to the ballet, and therefore I rested and took Tylenol until it was time to go. I love the ballet, Romeo and Juliet. In fact it is my all time favorite ballet! The ballet score written by Prokofiev is haunting and captures the psychological turmoil that Romeo and Juliet face as they find themselves falling in love with each other. I recall my parents taking me to see this ballet when I was in high school in Los Angeles. I was taking a class in school at the time that required its students to experience different musical venues, and we were required to keep a journal about these experiences. So that night as I attended the ballet with my parents, I had my notebook in tow. Seeing Romeo and Juliet for the first time was electric. I did not know what to focus upon first, the sheer beauty of the costumes and dance, or the breathtaking music that fills your heart and mind. Needless to say, after that performance I had a lot to write about. At the time, I thought such an assignment was simply busy work. But I came to love and appreciate my art teacher, and she inspired me to have confidence in my artistic talents.

I went to the ballet with Ann today. She had never seen Romeo and Juliet before, and it was my hope that she would feel the same way about it as I did when I experienced it for the very first time. The theatre was filled to capacity, and somehow when I hear Prokofiev's music and get captivated by the dancing, I am transported away from my own problems and pains for a period of time. Something that is very much needed! I enjoyed my time out today, my time chatting with Ann, and of course the beauty that can only be captured and expressed through the ballet.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I certainly hope that you feel better today and that you can get out and go to the ballet. I know how much you love it and I think that like therapy it will do you good. Grief already generates its own illness symptoms and to be sick on top of that is just too much for anyone so I hope that you are better today. I meditated on what was said yesterday about balance in all things and I do think that applies to us all. It is good to work, but also to rest and to find fun recreation. It is important to both give and to receive (a problem for many of us). It is important to have both time alone and time with those we care about. As I practice today, I will work on balance in my life and dedicate my energy to helping you find your way toward balance in yours. Be patient and try out what seems right but don't be afraid to change course if it doesn't work. You have so many gifts, so much talent that I feel you will find something worthy and compelling to do. Whatever it is/they are, won't replace Mattie in your life, but will honor him and his memory."