Saturday, November 24, 2018

Saturday, November 24, 2018

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and as you can see he liked to play in the kitchen sink. He loved sitting high up and looking out the window. He did not want to get washed in the sink or even have the water turned on. It was simply the fun of sitting in a space that no one else could fit in that captured Mattie's attention.  



Quote of the day: If you feel lost, disappointed, hesitant, or weak, return to yourself, to who you are, here and now and when you get there, you will discover yourself, like a lotus flower in full bloom, even in a muddy pond, beautiful and strong. ~ Masaru Emoto

During the candy drive, I received this wonderful turkey from my friend, Ali. Ali happens to be the daughter of my friend, Margaret. Margaret was Mattie's preschool teacher and became a close friend of mine. Unfortunately Margaret was diagnosed with ALS and died on June 1, 2014. 

It was Ali who reached out to me and offered the use of her garage for the candy drive. This was the first year we hosted the drive at Ali's home. During the candy drive, Ali's three children would come into the garage each day after school to check on the candy supply and to sort candy. We spent a lot of time together. So much so, that our candy sorting was added as an activity to their paper turkey. The feathers of this turkey highlight memories for the month of November. 

I did not want to disappoint the children, so I ordered toys for them before leaving for Boston. Two of Ali's children have November birthdays, so they had a joint party. However, I bought three gifts, because I did not want Ali's third child to feel left out.

This is a photo of Ali with two of her children celebrating birthdays. Charlotte wanted a puppy cake and Grayson wanted a Mickey Mouse cake. So literally it was a cute puppy cake with a Mickey Mouse dog tag. 

Adorable!

While at the party, I had the opportunity to meet Margaret's son. I knew of him, but never had the chance to interact with him until tonight. What I noticed immediately is that Margaret's son has her eyes. Not to mention many of her facial expressions. It truly caught me off guard because for a brief moment, I saw my friend again. 


Peter and I also spoke with a few of Ali's neighbors, both of whom wanted our business cards because they want to donate to Mattie Miracle. In fact, after I spoke to one neighbor about St. Jude, he decided to rethink his monthly donation to this medical research institution. The bottom line is the majority of children do not get treated at St. Jude, but instead at local hospitals. Which is why it is imperative to support local treatment sites, who will accept all children with cancer. No eligibility requirements must be met, and no medical referrals are needed for entry to a local hospital, unlike at St. Jude. 

On our drive home, we were followed by a big Mattie Moon. I think Mattie wanted to remind us that he is with us always. Going to any party, especially one that involves children, is hard for us. Chances are people will ask us about ourselves and our children. We explained to several people tonight that we lost Mattie to cancer. People then feel bad for asking, and think that they have upset us. Which isn't true, asking us isn't the problem. What is the problem is the reality, a reality that walks with us every day and every minute of every day. 

Friday, November 23, 2018

Friday, November 23, 2018

Tonight's picture was taken in November of 2005. This sight wasn't atypical for us. Mattie LOVED to paint with his feet. I literally would put newsletter down on the floor, get out paint and Mattie would go to town. He made some wonderful designs for note cards this way. The beauty of Mattie however, was he was neat. He understood that once he was done painting with his feet, he couldn't step off the newspaper. Instead he would wait for me to carry him to the kitchen sink to clean his feet.  







Quote of the day: What we’re really talking about is a wonderful day set aside on the fourth Thursday of November when no one diets. I mean, why else would they call it Thanksgiving? ~ Erma Bombeck



One word that captures how I feel........ TIRED! We drove for about 8 hours from Boston to Washington, DC today. We left 12 degree temperatures and are now back to the 30's in DC. Ironically the 30's feels like a heat wave in comparison. Thankfully we did not hit massive amounts of Thanksgiving weekend traffic. 

Sunny and Indie are thrilled to be back home. Sunny did not handle this trip as well as he usually does, as he seemed very anxious on both long car trips. Indie, managed it all like a champ and is back to business as usual. The beauty of a cat. 

Unpacked, laundry done, and everything put away. Signing off for tonight. 

Thursday, November 22, 2018

Thursday, November 22, 2018

Tonight's picture was taken in November of 2008. Mattie was home between treatments and received this turkey hat from his school counselor. In my opinion Mattie made the cutest turkey ever!!! This is my favorite Thanksgiving photo. I will never forget Thanksgiving 2008, it was a royal disaster as Mattie had all the classic post traumatic stress responses, which made life at home nearly impossible. It was a very sad and depressing holiday and to this day, I refuse to watch the Thanksgiving Day parade in NYC. The whole notion of the parade transforms me right back to Thanksgiving Day 2008. Our last Thanksgiving with Mattie. 


Quote of the day: He who thanks but with the lips thanks but in part; The full, the true Thanksgiving Comes from the heart. ~ J.A. Shedd

We celebrated Thanksgiving at our sister in law's house today. Both of our nephews and our niece were home, as two of them are in college. It is wonderful to see these children growing up over the years. Mattie was the youngest one out of the four of them. Which I am always cognizant of, and I would have to say that holidays of any and all kinds are very bittersweet for us. 

I am not a Thanksgiving Day fan, as I explained in last night's blog posting. I am not sure what is worse to manage the holiday alone or to be surrounded by family members. Especially family members with children. At the end of the day, nothing is right or feels right. 

Little things set me off when in a group of people and at the end of the day, I am left with the feeling that others truly can't understand or appreciate our loss. 
This evening, outside the window, I noticed a very full Mattie moon. I would like to think that Mattie was with us in some way and perhaps others thought of Mattie as well when they saw this big beautiful moon. 

Wednesday, November 21, 2018

Wednesday, November 21, 2018

Tonight's picture was taken in November of 2005. This was classic Mattie. He absolutely loved lying on our bed. When he wasn't lying on it, he was jumping on it. We spent many a day reading books on this bed or watching a Scooby Doo movie. It is amazing looking back on this photo  because it seems like it was taken a lifetime ago. Or even a completely different life altogether. Yet I write this blog and reflect daily because without doing so the mind has a way of playing tricks on me. I find I have to work hard to always remember that I once was a mom, and Mattie was once very much alive. 




Quote of the day: The shortest pencil is longer than the longest memory. ~ Mark Batterson



It is the day before Thanksgiving, I have to say this is a holiday that doesn't hold good memories for me or Peter. I attached the posting below that I wrote on Thanksgiving 2008, our last Thanksgiving with Mattie. Honestly why the hospital discharged us for Thanksgiving will always be beyond me. Being home post surgery was close to impossible and it was around Thanksgiving Day week/weekend that I could see Mattie exhibiting signs of post traumatic stress disorder. Or as psycho-oncologists refer to it as..... medical traumatic stress. 

The unfortunate issue was none of Mattie's healthcare team believed us when we reported that Mattie was highly anxious and agitated, he couldn't sleep, couldn't tolerate people talking or other sounds, and he did not want to be touched. To me these were classic signs that something was wrong, but instead, Mattie's doctors kept saying that this was a reaction to being on pain medications. I THINK NOT!!! 

This is is just one of the many examples of poor psychosocial care we received. Perhaps not even poor, but the LACK of care altogether. I am still perplexed how medical providers did not think ahead of time that there could be vast psychological consequences on a 6 years old receiving back to back limb salvaging surgeries on top of chemotherapy. It just reminds me why Mattie Miracle's vision and mission are so imperative. 

But look at this, it is 2018, TEN YEARS later, and we can still vividly recall Thanksgiving 2008. It was that bad and really that horrific to see Mattie so depressed, anxious, and in physical pain. These are the psychosocial consequences that continue on for us LONG after the treatment has ended. When I read the description below of that Thanksgiving, I am taken aback by my feelings watching the Macy's Thanksgiving Day parade on TV. In my posting I describe it as a fun thing that all three of us watched. I am not sure why I chose to write those words, because the reality was the parade served as a visual reminder of how different our lives were at that moment in time. To this day, I still won't watch the Thanksgiving Day parade. I leave you with my blog posting from ten years ago.......................................

Blog Posting from November 27, 2008:

Peter tells me Mattie had an awful night of sleep on Wednesday. Mattie was up on the hour waking up with terrible dreams. I remember these times from the first surgery. This is how Mattie's body deals with the pain medication and perhaps the whole horrible ordeal. I have decided to take over night duty tonight. Peter needs and deserves a major break. When Mattie woke up this morning, we turned on the TV and watched the Macy's Thanksgiving Day parade. In the past, Peter and I were normally so busy that we never watched the parade. But today, we all stayed in once place and enjoyed the floats and marching bands. I brought out many of the dishes I was preparing for the day, out to the living room, and set up prep areas there, so that Mattie could see that I was with him and could take part in the cooking process. He was VERY demanding all day, he wanted Peter and I near him at all times. It was thoroughly exhausting, and it made it very difficult to cook and be in the kitchen. We did enjoy the parade, and our favorite float was with Kermit the Frog, featuring a song, "I Believe!" Seemed very inspiring and meaningful for the season and for us personally.

I tried to make today festive and got out my favorite turkey plates to inspire Mattie to come and eat at the table. I attached a picture of our table. However, it wasn't the Thanksgiving we were hoping for. Mattie refused to come to the table, wouldn't eat any of the food, and was in a grumpy mood. Mattie had requested certain foods today, and I made all of them. Even his favorite, sweet potato souffle with marshmallows. But nothing really interested him. He was just mad, and the only way Peter, my parents, and I could have dinner, was with Peter sitting on the couch next to Mattie. It seemed very disjointed, and what drives me absolutely crazy is that Mattie gets snappy and doesn't like hearing noise or people talking. He prefers silence! In many ways our home is becoming prison like. We are praying that as soon as Mattie gets some more independence back physically, a lot of the emotional outbursts, the anger, and anxieties will lighten up. But until that time, the question becomes how do we manage all of these changes in Mattie?

Mattie's occupational therapist, Kathie, is coming over tomorrow, and our nurse Sandra is coming back. Hopefully that interaction will go better since Peter will be home, and there will be two of us to help Mattie through the visit. We end tonight with this quote. Happy Thanksgiving!

"Do not get tired of doing what is good. Don't get discouraged and give up, For we will reap a harvest of blessing at the appropriate time." ~ Galatians 6:9

Tuesday, November 20, 2018

Tuesday, November 20, 2018 -- Mattie died 479 weeks ago today. 

Tonight's picture was taken in November of 2005. This was quintessential Mattie. Mattie had built a vehicle out of Legos and he decided to be a human bridge. Naturally I guided the vehicle under the Mattie bridge, and Mattie loved watching the entire process.


Quote of the day: Strategic planning is worthless – unless there is first a strategic vision. ~ John Naisbitt

We ventured to Peabody, Massachusetts today and viewed a special exhibit called, Empresses of China's Forbidden City. 

This exhibition is the first to explore the role of empresses in shaping China’s last dynasty- the Qing (pronounced ching) dynasty - from 1644 to 1912. Nearly 200 spectacular objects from the Palace Museum tell the little-known stories of how imperial women influenced court politics, art and religion.

Peter snapped this photo of me. Though we both do not know a lot about Chinese history or art, today's exhibit was definitely an informative lesson about life in China during the the last dynasty. The role of women in the empire was fascinating. 

All Qing empresses entered the palace through marriage, Every three years, the imperial court required conquering elite families to present their daughters as candidates for the imperial harem inside the Forbidden City. The girls, around 13 years old, were mostly Manchu or Mongol in ethnicity. Girls from Han Chinese families, China's largest population group, were largely excluded. The emperor and his mother, the empress dowager, selected multiple consorts during the recruitment, but only one empress at a time could be his primary wife. While physical beauty, health, and family background influenced a girl's chances of joining the harem, several emperors and empresses dowager chose empresses strategically in order to consolidate or contain the power of the monarch. The marriage ceremony marked the bride's allegiance to and membership in the imperial family, as well as the severing of her ties to her birth family. 

This symbol was practically on most items and clothing. Especially on wedding objects. As it symbolizes double happiness.

An object used during a wedding ceremony. Notice the Double Happiness symbol!

The empress likely received this headdress as a wedding gift from the emperor and would have it for festive occasions. There are 31 ornamental phoenixes fastened to the frame by pliable metal wire. We learned the the phoenix was a symbol of the empress.

It clearly is a culture based on meaningful symbolism. Flowers of the Dynasty included the peach (symbol of longevity), chrysanthemum (symbolizes long life, endurance and virtue), pomegranate (fertility) and plum blossom (resilience). These flower symbols were embedded in most of the ceremonial dresses. 

A ceremonial garment. If you look close you will see butterflies, which symbolize love. In fact, such a garment would have been worn by an empress during her wedding ceremony. 

A beautiful garment with wisteria. It was truly striking and intricate. 

This would have been worn by an empress on her birthday. Green was for birthdays, red for weddings, and yellow for other ceremonies. 

A close up for the above dress. Notice the gold symbol.... which signifies longevity.

The Qing imperial harem consisted of 8 ranks of consorts with the empress as the very top. She held the important role of manager of the imperial family affairs and mother of the state. The splendor of what she wore and used, and where she lived signified her supreme status. The imperial court closely regulated the life of each empress to ensure she stood as an exemplar for all women, and yet the male officials who wrote Qing court history recorded very little of her activities. They perceived family matters and women's roles as less important than the state affairs the emperor managed. 

Keep in mind that the empresses did not own any of their items. Everything belonged to the empire. 

Qianlong (the emperor) had a deep love for his mom (Chongqing). Chongqing was the longest living empress in Chinese history, enjoyed extraordinary health and traveled widely, even in her 70s and 80s. This walking stick with a jade turtledove, a symbol of longevity, illustrates the close relationship between Chongqing and her only son, the Qianlong's day opened with a visit to his mother. When official duty kept him away, a walking stick like this one would act on his behalf, metaphorically accompanying and supporting his beloved mother. 

Qianlong (the emperor) wrote this beautiful poem when his wife died. He was married to her for 22 years and apparently they were so devoted to each other that he never married again. Despite of course having a whole consort of women living in the Forbidden City. 

This object is called a Stupa. Stupas enshrined the relics of holy persons in Buddhism. Soon after Empress Dowager Chongqing's death in 1777, her son, the Qianlong emperor, commissioned this stupa to hold her hair, which was considered a precious and enduring part of the human body, and served as a memento of the deceased. 

I personally think reading Qianlong's poem about his deceased wife and then reading about how he preserved his mother's hair indicates to me his devotion to these women in his life. Though it was clear that women were not given high political positions and in many cases were undervalued and used to purposely propagate the society..... women did influence their husbands and in Qianlong's case most likely influenced his decisions which impacted the entire dynasty. 

Monday, November 19, 2018

Monday, November 19, 2018

Tonight's picture was taken in November of 2005. Mattie was 3 years old and was fully on and engaged with the world. Though in many ways, I think Mattie was just born on. Part of him understood that he wouldn't be with us for very long, so he wasn't going to waste any time. He was the ultimate multi-tasker. Though Mattie gravitated to Legos and things 

with wheels, he also loved tinker toys and spent a lot of time building and creating. 

 

Quote of the day: Face and push past your biggest fears.  Your biggest blessings could be waiting right behind them. ~ James Rosseau, Sr.

This afternoon we took Sunny out for a walk, and right outside Peter's parents home was this sighting..... two female turkeys. Kind of a funny sight with our car in the background. These are wild turkeys and I can assure you Sunny was intrigued. 

Behind their home is this wonderful wooded area and pond. Mattie used to love walking and exploring this area. In fact as Peter and I walked the woods today, we pointed out the multiple places we walked and had photographed Mattie. 

Now we walk these woods with Sunny. Sunny absolutely loves the adventure. 

A close up of our boy. Doesn't Sunny look regal amidst the fall leaves?

Quite a sight, no? It is so different from our daily walks in the city. 

Sunday, November 18, 2018

Sunday, November 18, 2018

Tonight's picture was taken in November of 2005. We took Mattie to the National Geographic Museum, and outside the Museum was this bronze sculpture of a monkey. Naturally, it was too intriguing to pass up the opportunity to climb on it. Ironically that was the first and last time Peter and I ever went to that Museum. I am not sure why, most likely because we went there with Mattie and there really isn't a reason to venture back again. 







Quote of the day: Humility is not thinking less of yourself; it is thinking of yourself less. ~ Rick Warren

It was a long day for the four of us. Of course catching the cat and putting her in a the carrying case is always a hoot. Indie seems to know just when change is coming and in response she hides under our bed. Trying to get her out took two of us this morning. Needless to say, twenty minutes later we caught her and boxed her. 

Sunny gets very concerned about Indie and for the first three hours of our car ride, he was facing her in the blue box. You can just see Sunny's apprehension, can't you?

Sunny had trouble settling down in the car today. Typically he sits still on long trips, but not today. At many points he was up on all fours trying to assess where we were going and what was going to happen to him. 

It took us close to 8 hours to drive to Boston, and that included three rest stops to walk Sunny. 

When I snapped this photo, Peter joked with me that Sunny wasn't happy that we had just entered into NYC. Since he deems Sunny a Red Sox fan. Got to love that thinking!

This evening, Peter's parents celebrated his birthday with a lovely cake. He wasn't expecting this surprise, but I am happy I captured it.