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
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