Quote of the day (Thanks Mommy!): My mom wrote, "In you and Peter's pursuit of excellence in the search for a cure for Mattie , therapies for a ideal recovery of the use of the three limbs affected by the disease and in trying to stabilize his mental state that has thrown him for a loop by the extreme trauma, stress and medications that he has been exposed to over the course of the last 4 months to help him through the curative process, your determination and strength of character, love and devotion come shining through. This quote is for you both."
To find what you seek in the road of life, the best proverb of all is that which says: Leave no stone unturned. ~ Edward Bulwer Lytton
Wednesday night wasn't a great night either. Mattie spent a great deal of it up, uncomfortable, and agitated. Peter and I landed up changing a lot of linens, as Mattie went to the bathroom several times in them. The amount of fluids he is intaking to flush out the chemo each night is overwhelming. So Peter and I started today with a major sleep deficit. It was funny at 6:30am, we finally got Mattie calmed down, and the nurse told us to go back to bed, but that wasn't about to happen. Peter had to get it moving to go to work, and I wouldn't let Peter leave before I could take a shower. Some people need coffee to start their day, I need a very hot shower.
The day to me was an absolute blur, and isolated blur. Mattie wouldn't let me leave the hospital room for the most part. Ann and Linda both came to visit with Mattie today, but he wasn't receptive to either of them. This of course worries me since he is very fond of these ladies in his life. Linda did bring in a computer today with a camera, and she was able to coordinate with Peter ahead of time, and basically Mattie was able to webcam Peter. Mattie thought it was very neat, and Linda thought of this idea because Mattie has been pining for Peter all week. Peter did wake Mattie up today before he left for work, and they said goodbye to each other. However, when Mattie woke up later in the morning, he was hysterical. He had no recollection that he spoke to Peter and hugged him before he left for work. Again, we needed to medicate Mattie this morning, but the goal today was to encourage Mattie to use his oral anti-anxiety medication rather than relying on the IV anxiety medication.
Ann came today and brought us a wonderful lunch. Ann also brought an incredible bag of tricks with her. Mattie and I did make Ann's prop plane today and he loved the gak like thing. That occupied Mattie for a good 15 minutes. Amazing! We will save the other goodies for another day, because I know they will capture his attention, and I need this kind of stuff in my bag of tricks. While Mattie was playing with this sparkly gak (which is like a slimy clay), I ate lunch. Ann brought me this wonderful vegetable sandwich. While I was eating the sandwich, I tasted some kind of herb in the sandwich that I have had before, and love. But it was like I was having amnesia. I couldn't remember what the herb was, or where I even had it before. This seems like such a trivial thing, but this bothered me for the next 30 minutes. I still can't remember what it is. I chalk up this memory lapse to intense sleep deprivation. Thank you Ann for coming today and for understanding Mattie's mood and behavior.
This afternoon Linda came back into Mattie's room. She had a hammer and a wood craft kit with her. Mattie needed the hammer for his wooden prop plane set, so he accepted Linda when she came in. They continued building together and while they were working together I rested for a bit on Mattie's bed (right next to him). Then Denise, Mattie's social worker came to visit, and at that point, I decided to leave the room for a few minutes to do the laundry (I never knew doing the laundry could be considered such a wonderful respite). In any case, while I was doing the laundry I met up with my parents. They told me about the wonderful time they had with Honey today. Honey is one of my supervisors at the George Washington University. Thank you Honey for intiating this invitation. I know my parents enjoyed getting to know you.
The 20 minute escape to the laundry room was good. I got a minute to just be, without hearing and meeting someone else's demands. Pretty soon thereafter Peter arrived at the hospital, and Mattie was very happy to see his dad. This evening I had the opportunity to meet the third child psychiatrist in the practice here. She was great. I found her very helpful and gave me some useful and helpful strategizes on how to deal with how Mattie relates to others in his life. The problem with Mattie's situation is it is hard to determine what issue lead to the anxiety. There are so many events and issues that could have produced the anxiety. But the more I was talking to the doctor, the more I realize that Mattie too has signs of depression. He is irritable and definitely shows a lack of interest in most activities. This saddens me because Mattie has never been a kid who got bored easily.
As we head into friday, Dr. Toretsky arranged for Mattie to get a chest CT. Why this? Well I am concerned about more metastasis. The next likely place the tumor cells would travel is the lungs, and Mattie has technically been off of chemo for quite some time between surgeries. So I am worried, and can't have peace of mind until such a scan is performed. I told this to Dr. Toretsky on monday, and he immediately took care of this issue. However, I am now worried. Do I want the result, can I handle the result? Hopefully God has kept Mattie safe during this time off chemo, in order to give him a fighting chance.
Today I received a lovely e-mail from Debbie Pollak, Mattie's art teacher at SSSAS and huge Mattie supporter. For the first graders community service project this year, Debbie had all the first graders look at Mattie's "Mr. Sun" painting and she had them complete an open ended sentence. The responses were priceless, special, and touching. I am so happy Debbie shared them with me. This is a special group of children, under the direction of a creative and loving teacher.
Debbie wrote the following to Mattie: "Dear Mattie, I showed your painting to all of your first grade classmates. Here are some messages to tell you how your painting makes them feel. They are writing you letters too. I will get them to the post office at the end of the day so Mommy and Daddy can give them to you as soon as they arrive at your house. I love you, Ms. Pollak"
All of the children completed the phrase….. “When I look at Mattie’s painting, I feel…….
Ms. Flannigan's class:
Kelly… loving, very colorful and joyful.
Cameron…makes me feel really, really happy and really good.
Reid…colorful, joyful and good.
Nikki…makes me feel bright and kind.
Kate…dramatic, joyful and loving.
Katherine…loving and warm.
Eliza… happy and beautiful.
Andrew…colorful and loving and generous.
Sydney…joyful, happy, warm, generous and kind.
Jessica…bright and excited.
Paul…me feel happy and warm.
Cade ….nice, good, and joyful.
Nick… joyful and hot.
Mya… colorful and beautiful.
Elizabeth…like having happy tears and very loving.
Tyson…happy, generous and glorious.
Ms. Fisk's class
This class had to finish this sentence……When I see Mattie’s painting, I feel like……
Missy…..the painting is great.
Caroline…I want to go outside.
Luke…that I want to20paint like you.
Claire…I am looking at great beauty.
Woods…playing WII with you.
Charlotte… I want to paint a sun too.
Darius…I wish I could paint just like you did.
Peter…I want to draw.Jordon..I want to play with you.
Tyler…I want to play with you. I can help you play.
William…going to the beach so I can feel the warmth of the sun.
Alexandra: you are a great painter.
Maddy…I am speechless.
Beth.. it makes me want to see you.
Sydney…like my heart is singing.
Ms. Haughton's class
Cedric…Your painting looks awewome like it is in a real art museum.
Mason…Your painting looks brighter than the sun.
Charlotte…I love the colors you chose for your painting.
Nicholas… Your painting is excellent.
Tori…I love your painting sooooooo much.
Xander… Your painting is PERFECT!
Sydney…Your painting looks so amazing.
Luke…Your painting looks so good, that I wish I could paint as well as you did.
Hanna… Your Mr. Sun painting looks really real.
Bennet…I think your painting looks very creative.
Liliana..Your painting looks so good that it makes me want to cry happy tears.
Luke…The paintng makes me feel warm like the sun.
Frederick…I think your painting looks shinning.
Latric… Your painting looks extra special.
Florence…Your painting makes me feel very happy.
Fleming…Your painting looks beautiful.
Ms. Knowles' class
The class finished the sentence: I love your painting because it....
Catherine…is soooooo beautiful.
Claire…makes me want to go to the beach.
Charles…shows what a good painter you are. I wish I could be as good at painting as you are.
Jay… is beautiful.
Kazu…is as bright as the sun.
Shivani…. Makes my day.
Bridget..inspires me to do a painting.
Abigail…makes me happy just to look at it.
Alice…is simply lovely.
Brian…is so colorful.
Lily…makes me wish you were here with us.
CJ…is so bright and cheerful.
Killian…has so many colors in it.
Sylvie….looks magical.
Cavin Reed…is so glimmering on this gloomy day.
We want to thank the Fortune family tonight for a lovely dinner. It was very tasty and I truly appreciate the chocolates, but most importantly the Trauma book (Trauma through a child's eyes) you bought for me. I very much look forward to reading through it. Mattie loves the Scooby Snacks! Thank you! I want to share a prayer we received today from Dr. Aruna Nataranjan. Dr. Nataranjan is a PICU intensivist, and helped us tremendously during Mattie's recovery from his second major surgery. Our family has grown very fond of her. She is so competent and compassionate.
Saint Theresa's Prayer
May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith,
May you use those gifts that you have received, and pass
on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.
At the moment, as I type this blog, Mattie is sitting up in his wheelchair (under the twinkling Christmas lights in our room), and watching the movie, The Wild. We have never seen it before, but Mattie is glued. It is about animals escaping from the zoo. A concept we thoroughly can relate to. Please, please, please think positive thoughts tomorrow as Mattie gets his CT scan at 10am!
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