Friday, February 8, 2019

Friday, February 8, 2019

Tonight's picture was taken in February of 2009. By this point in time, getting Mattie out of his hospital room was challenging. As the cancer treatment wrecked havoc on Mattie's mood and personality. Yet when I was able to get him to the child life playroom, there were moments of happiness. Moments when we blocked out what was happening to us and instead laughed and created together. In front of Mattie sat one of his amazing boxed creations. 


Quote of the day: We know what we are, but know not what we may be. ~ William Shakespeare



It is 10pm California time and I would say we had another full day. Running back and back between the hotel and the house. Overseeing the progression with the contractors, airing out the house, chores, and trying to develop some sort of routine. But nothing about living out of a hotel room is normal. It may sound fun, but it actually is challenging and stressful because when people are in your home, you do need to monitor the process. Especially when the issue at hand involves potential mold remediation. Needless to say, we learned today that the issues are significant enough, that my parents will have to be out of their home for at least a month. That too may be an underestimation. In any case, I am tired and signing off for tonight. 

Thursday, February 7, 2019

Thursday, February 7, 2019

Tonight's picture was taken in February of 2009. I absolutely love this photo that I took during the middle of a Mattie physical therapy session. Mattie was far more likely to participate in physical therapy if he had company and an entourage. In front of Mattie was his physical therapist, Anna. Behind him were Jessie (one of his art therapists) and Linda (his child life specialist). To me, this photo truly illustrates the beauty of psychosocial support. Because Mattie's therapists understood that they had to get to know the whole child and meet his social and psychological needs in order for him to comply with their treatment.  

Quote of the day: I tell you, in this world being a little crazy helps to keep you sane. ~ Zsa Zsa Gabor

We spent some time at the house today. As you can see, every room is sealed off with plastic. I feel better about the progress being made and the fact that whatever mold was in the area was removed. In addition, I am seeing that walls and the floor are drying. Of course, even with that said, a lot needs to be reconstructed. As walls have been torn apart, along with an entire floor. 

So the culprit that caused this leak is the window near the ladder. Literally rain flooded in through this window, which caused flooding in the walls, that seeped into the floor. As you can see, a good portion of the wooden floor has been removed!
















This is the state of the kitchen! Today, I decided to shut off the HVAC system, to prevent the smell and dust from traveling around the house. I also opened many of the windows in the house, with the hopes of getting fresh air throughout the house. After a few hours, I could feel a difference. More tomorrow!

Wednesday, February 6, 2019

Wednesday, February 6, 2019

Tonight's picture was taken in February of 2009. Do you wonder what was happening in this photo? Well we weren't playing a game per se, instead, this was a physical therapy session. However, in true Mattie fashion, he wanted me to participate. When Mattie was a toddler and was working with an occupational therapist for sensory motor issues, I learned right away, that if we wanted Mattie to comply with activities, that I had to do them too. Therefore, when Mattie was diagnosed with cancer, and needed physical therapy, I intuitively knew that I had step in and join him. So right in the middle of the hospital hallway, Mattie and I were playing a therapeutic version of the game Twister. 


Quote of the day: Life is like playing a violin in public and learning the instrument as one goes on. ~ Samuel Butler

Today we went to a museum that was about 45 minutes away from where my parents live. The museum is situated in such a beautiful and peaceful location, nestled up in the hills. With all the rain LA has been getting, the hills are lush and green. Notice though I am wearing a coat. This morning it was in the 40s!

The museum is not far from Camp Pendleton, a marine base in Southern California. We got to see a fly over.

My dad and me. While at the museum, we had the opportunity to chat with some lovely people. We met a delightful couple from Idaho and got to learn a little bit about their state and family. 

Meanwhile when we got back to the hotel this evening, we heard music coming from outside. We looked out our window and saw this! We literally watched an entire orthodox Jewish wedding from our window. At one point, a wedding guest was even waving at me!

Literally there had to be about 500 chairs set up for this wedding. However, I would say most of the chairs were unoccupied. 

The bride was escorted in by two young women. I really wish I understood what I was watching because I did not get the significance of these women. Since it appeared that the bride's parents and grandparents were sitting under the canopy, where the ceremony took place. 

Mind you as the bride was walking in, no one seemed to be paying attention to her. The men in attendance all were located together on the right hand side of the aisle and the women on the left hand side. The men were standing in groups, talking to each other, on their phones, and appeared disengaged from what was happening. 

Close up of the bride, who was veiled throughout the entire ceremony. So I looked up the significance of the veil and found.......The veil is representative of the idea of modesty and points to the idea that the groom is not only interested in the bride’s external beauty, which fades, but more so in her internal beauty, which she will never lose. However attractive physical appearances may be, the central focus in Judaism is the soul and character of an individual.

Once the bride got under the canopy, she and everyone else with her seemed to be walking in circles. Not just once but MANY times. I couldn't get it! So again, I went to Google and learned......At an Asheknazi wedding, once the bride and groom are under the chuppah (canopy), the bride proceeds to circle around the groom seven times. Just as God created the world in seven days, the bride is creating the couple’s new world, figuratively building an environment of completion and wholeness that the couple can only attain together. One interpretation holds that the bride is creating the “walls” of the couple’s new home, fashioning a fortress that will spiritually protect her husband and family. 



Meanwhile back to the MOLD front. We went to my parent's house today and the more I see and smell, the more concerned I get. Thanks to HGTV, of which I am a BIG fan, I have learned from the Property Brothers the challenges of mold. I have watched enough HGTV shows to know that remediation of mold differs by the number of square feet affected by mold. An area impacted by moisture that is 10 square feet isn't as complicated and can be managed by a contractor. However, once you get into a larger space (100 square feet or more) that is affected, then properly trained and equipped mold remediation workers should conduct the remediation. So I went on-line tonight and found the guidelines developed the the NY Department of Health, and are followed throughout the United States (https://www1.nyc.gov/assets/doh/downloads/pdf/epi/epi-mold-guidelines.pdf). Needless to say, being armed with information is helpful, because we are better able to direct the management of the problem. 

Right now two rooms in my parent's home are completed sealed off by plastic and duct tape, dehumidifiers are going 24 hours a day, and the smell is so intense as soon as you walk through the front door. I imagine the toxic smell is coming from the chemicals used to kill the mold. But given what I am seeing and smelling, I refuse to let any of us stay in the house for more than five minutes to assess each day's progress. Another full day!

Tuesday, February 5, 2019

Tuesday, February 5, 2019 -- Mattie died 490 weeks ago today.

Tonight's picture was taken in February of 2009. This was classic Mattie! I never saw other physical therapy sessions in the hospital looking quite like this! Mattie's physical therapist, Anna, truly rose to the occasion. She understood that getting Mattie to participate in therapy, meant that therapy had to be creative and engaging. Anna never disappointed. In order to get Mattie to move his body and use his legs, Anna would set up obstacle courses in the middle of the hospital hallways, and of course this intrigued Mattie and motivated him to participate. 


Quote of the day: I love those who can smile in trouble. ~ Leonardo da Vinci

My day started early, with a flight to Los Angeles at 7am. Perhaps I was tired or I don't know what, but the flight actually went quickly for some reason. In addition to that, there was a lot of turbulence. I literally landed in what seemed like a big cloud. Ironically it was warmer in Washington, DC today than it was in LA!

On my car trip from the airport, I got to know my driver. Literally he chatted with me for an entire hour. I got to know about him and to hear about some of his challenging car rides and the people he has had to deal with. When the ride was over, he literally said he felt better after talking to me. Then joked..... 'you should be a psychiatrist.' He made me laugh, and I said well in essence I am a therapist. 

Peter sent me this photo tonight! Apparently someone misses me!!




















I have had a full day today, as my parents are now living in a hotel indefinitely. Their home flooded from the massive amounts of rain LA has been receiving. Literally the walls and floors in two rooms were affected. I got to go to the house today to talk with the contractor. Needless to say, this is a serious and extensive issue, that in my assessment will take over a month to clean up and renovate the space. Naturally the concern is mold and if the space isn't dried out soon, the threat of mold becomes more likely. Being here a week, I hope to watch the progress. 

This evening, I received a lovely email from Bob Weiman, the associate head of Mattie's school. When Mattie was managing cancer, Bob came to the hospital very frequently to teach Mattie how to perform magic. Mattie absolutely loved his visits from the "Magic Man." Magic was very good for Mattie. Mattie felt good about himself because he was learning skills and techniques that were unique and helped him build rapport with his medical support staff. Mattie looked forward to Bob's visits and in those brief moments, you could see Mattie was happy and thriving despite all he was facing. 

I know how special these moments were for Mattie and for us, but it was lovely to see Mattie incorporated into Bob's blog posting. Which leads me to conclude that the relationship was mutual, Mattie and Bob learned something from each other. I welcome you to read this wonderful article for yourself. 

5 Reasons Your Child Should Learn Magic:

http://blog.sssas.org/5-reasons-your-child-should-learn-magic

Monday, February 4, 2019

Monday, February 4, 2019

Tonight's picture was taken in February of 2009. Sitting on a paper towel, in Mattie's lap, was a cupcake! By this point in Mattie's treatment, he LOVED and craved cupcakes. So when ever we were home between hospital stays, I would bake cupcakes and bring two dozen of them into the hospital with us. These cupcakes served as rewards for participating in physical therapy. Of course at that point we were focused on getting to the end of treatment and recovery, so anything that inspired Mattie to move his body and learn to walk again, we did!


Quote of the day: The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Goethe

Check out these two!!! This is what mornings are like for Sunny and Indie! Well that is of course until I am dressed. Once I am dressed, Sunny is very good at herding me around to go outside, to get treats and meals! Got to love these two! In a way, they really are pals. 

Many years ago, Peter worked at Arthur Andersen. It may have been one of the best companies to work for, and the reason why is it started with the people who worked there. Bright, committed, dedicated, and collaborative go-getters. The demise of Andersen is still something we talk about. After Enron, everyone at Andersen dispersed and had to find new professional homes. Several people from Andersen started their own consulting firm, which later merged with TeraThink. 

When Mattie Miracle decided to recruit corporate sponsors to our Walk in 2011, we reached out to our former Andersen contacts who now work for TeraThink. Make a long story short, they took a chance on us, and in 2011, became our first corporate sponsor. Now ten years later, they still are an important part of our Foundation family. They are Walk sponsors, candy collectors for our Item Drives, and have helped us run policy events on Capitol Hill. 

Today we learned that TeraThink will be a 10th anniversary sponsor of our Walk. Which means that they are donating $10,000 to Mattie Miracle. Receiving their email was the highlight of my day, maybe week or month. We feel honored to have their support in all ways. In line with Goethe's quote tonight, TeraThink is one of our connections who make this world an "inhabited garden."

Check out TeraThink's community page: https://terathink.com/community/

Sunday, February 3, 2019

Sunday, February 3, 2019

Tonight's picture was taken in February of 2003. To me this look was priceless! Mattie was sitting in his "tot wheels." This thing had four wheels and Mattie's feet could touch the floor. So literally it was like Mattie was driving a car inside our home. He absolutely loved the freedom to move around, and his smile captures that fact!


Quote of the day: The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have. ~ Katy Dawson

This morning I received a message from my friend, Denise, who encouraged me to look at an article she posted to her Facebook page. Any one who knows me, knows I don't spend much time on Facebook, therefore if you want me to see something you either have to tell me or tag me. I don't spend time on Facebook mainly for mental health purposes, because when you have lost a child to cancer, seeing everyday posts about families can be overwhelming to see. Especially in mass quantities. 

Denise wanted me to read the article entitled, The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have. It just so happens that we both know the young woman who wrote this article. In fact the author, Katy, has volunteered at a Mattie Miracle Walk.

I attached the link to Katy's article below so you can read her own powerful words and insights. But here's the take away for me..... Katy is speaking my language. I am quite certain those of us who are survivors of a trauma, communicate on a different plane. We have our own insights and language. Both of which can scare other people! Though Katy and I are facing different issues, the commonalities from the aftermath of a traumatic loss are noteworthy.  

When someone you love dies, your world stops. You expect every human being around you to be equally altered and affected. But that is not how it works. The world continues spinning, people continue working, laughing, having fun and living. They are living, while you feel like retreating. In fact, I would say that retreating from the world is one of the common ways we all deal with grief. Why retreat? Do we retreat because we can't face what we are dealing with? Perhaps! However at the core of it all is that traumatic grief leaves you feeling unsafe. If the impossible can happen, then how on earth can we have any control over our life or what happens to us? Retreating at home can help us feel secure in our unsettling world, but it can also protect us from many outside social and emotional threats we perceive in our world..... in my case, friends talking about children, family celebrations, and milestone moments (graduations, religious ceremonies, award ceremonies, marriages, baby showers, etc).

I recall during Christmas of 2009 (the first Christmas without Mattie), I discovered the Hallmark channel. I must have watched every Hallmark movie possible and while watching I was making candy cane Christmas decorations for friends from my bed. It was me, my glue gun, candy, and the TV. That was all I needed and could need. The movies kept my mind busy and the crafting kept my body moving.  In fact, I have found through talking to other people who have survived a trauma (and I am talking about any trauma), that we all seem to steer away from TV programs with loud noises, dark themes, and violence. Which may explain why I live in the world of Hallmark and HGTV.  

At the end of the day, Katy's title for her article captures the essence of a traumatic loss. The loss itself is bad, but it is the continual loss you experience each day/month/year which is exhausting. Lastly, the challenge (which is ever evolving) is to find a way to move forward knowing full well that what you had hoped for in the future (which so many around you have!) is never going to be. 


The worst part is not mourning the loss of what you did have, but mourning the loss of what you were supposed to have:

https://optionb.org/stories/the-worst-part-is-not-mourning-the-loss-of-what-you-did-have-but-its-mourning-the-loss-of-what-you-were-supposed-to-have-x1gqd3mg7?fbclid=IwAR0eAwjmli3y21-x4bBkrbtjVmF9H-Xo6pQR1kBiqsKr0i0b8MMvwTs_ZkA