Quote of the day (Thank you Virginia B.):
"Whoever said winning isn't everything never had a child with cancer." ~ Anonymous
I was the first one in our house to wake up today, and that is only because I set an alarm clock. We had a deadline to meet, we had an appointment in the Lombardi Cancer clinic at 10:30am. The clinic staff are probably so used to me by now, because I am always an hour late to every appointment. Before Mattie's illness, if I made an appointment, I was there right on the dot. But now, my philosophy is we are doing the best we can, and we get there when we get there!
Mattie had a good morning, and ate oatmeal and pancakes. It was an eating morning. Mattie has lost some weight, and is a solid 42 pounds at the moment. My goal is to continue to get him to eat anything prior to his next chemo treatment. Mattie was compliant to go to the clinic, because we promised him a trip to Walmart and Target afterwards. Basically my least two favorite places to go to the day after Christmas. But he was so disappointed yesterday with his gifts, we told him he could pick something out at each store. He was all business during his clinic appointment, because was motivated to get out of there and achieve his goal... picking out a toy!
Moving Mattie in and out of the car isn't a simple process. The wheelchair alone feels like it weighs more than I do. So each time I want to get Mattie from the car to the wheelchair, I have to first lug the chair out of the trunk, then I have to assemble the chair, help transfer Mattie from the car to the chair, and then reverse the process when you are done. I think Mattie was getting tired after several attempts in and out of the chair today! We first stopped at Walmart, which if you haven't been in a Walmart the day after Christmas, then let me paint a picture for you. It is wall to wall people, and frankly a zoo. You think the store was giving away merchandise with the crowds it pulled in. Any case, Mattie found a wonderful Knex set at Walmart, called a Doubledare Dueling Coaster. It reminds me of a rollercoaster, but for two racing cars! At Target, he found a remote control car carrier, which also had a remote control car inside. These two items made him so happy today, and he played with them all day. In fact, Peter and Mattie spent about three hours building the Knex structure. Take at look at the masterpiece!
While they were busy building, I was doing some other chores. I decided to do laundry, because you never know when you will get called back to the hospital. I want to be prepared in case Mattie does become neutropenic. It is like living from moment to moment, from fever to fever, and chemo cycle to chemo cycle. Basically you are always walking a tightrope. I have my hospital clothes or uniforms as I call them. I only wear certain clothes at the hospital, and if I should ever be able to put this time behind me, I plan on literally burning the clothes. In fact, I may never be able to wear sweat materials again in my life.
In addition to doing laundry, I also decided to move supplies from my parent's apartment to our home. My parent's lease is up on December 31, and I figured since I had the time to devote to this project today, I might as well do it. I knew I shouldn't put this project off to next week, because I don't know what condition Mattie will be in then. I took cart loads of canned foods and paper products from one place to another today, but what I quickly realized was where in our home was I going to put all this stuff? We are packed to the gill at the moment, because now I don't have the time, patience, or effort to devote to combing through things on a regular basis. So what started as a simple project of relocating items, took on a life of its own. I had to rearrange all my kitchen cabinets and pantry closet to get things to fit. It actually was an important exercise to do, but it only further showed me how things are piling up around me, and I can't seem to keep up. Tomorrow, Alison and Ellen will be helping me move all the boxes of things I plan on donating of Mattie's, which are currently sitting in my parent's apartment, into Alison's car. December 31st is my time frame to complete everything in my parent's apartment, and I want to do it sooner rather than later. I was contemplating schlepping the things myself on saturday to Goodwill, but then I thought about it twice, and e-mailed Alison, Ellen, and Christine.
I am very fortunate, Ann has found someone to help me everyday of the week during the day time hours. So each day I have a point of contact, who I can call or e-mail on a moment's notice for help. I do not like to take advantage of people, but there are times, I know I have to send the flag up, and need to step back and get help. Moving boxes is one of those times. Thank you Ashley for checking in with me today, and offering to help me!
I want to thank the Cooper family for a lovely chinese dinner. We actually all watched a Scooby Doo movie tonight with Mattie, while we were eating. This was a major accomplishment, because for the past two days, Mattie did not even want to be in the same room as food, or smell food. We also want to thank the Cooper's for the gift they gave Mattie, we haven't opened it yet, but I think Mattie will like it, since it sounds like a lego from shaking the box. Great dinner and thank you also for the beautiful holiday cookies!
This weekend, Peter's brother, sister-in-law, and their three children are in town. So I will be curious to see how Mattie relates to his cousins and what he decides to play or do with them. This could either be a great weekend, or a very difficult and moody weekend for Mattie. The verdict is out.
Today in the mail, Mattie received several handmade Santa cards from Ms. Pessaud's second grade class at SSSAS. Thank you for these lovely cards and for thinking of Mattie! The santas are so colorful and the sentiments inside the cards are lovely. I also received two lovely e-mails today that I would like to share with you. The first one is from Mark (a friend and RCC parent). Mark wrote, "I wanted to let you know how happy we were to see that the presents were a hit and to see the photographs of Peter and Mattie in the noses, hats, and antlers. Grace had a feeling they would bring a smile and I'm so happy to see that she was right.
I actually first stopped by the hospital (we hadn't been able to check the blog since my computer has been giving us problems, so we didn't know you'd gone home) and a nurse told me with a gentle smile "Oh, Mattie was able to go home yesterday." So I dropped them the gifts by your front desk -- I'm not sure if it was Mazie or Jessica, but she was very nice.
I'm mainly writing because I wanted you to know that Christopher picked out that blue winter hat specially for Mattie. John had wanted to give Grace a winter hat for Christmas and when we were in L.L. Bean looking at hats, Christopher just said out of the blue "I want to give Mattie a hat." He picked it out and picked out the card, too (the popup card with Santa in his sleigh). Both were totally unprompted. Christopher talks about Mattie often and while I don't think he understands everything that's happening, he clearly understands that Mattie isn't well and wants to do anything he can to help. I am thinking that Christopher must have thought that Mattie's head is probably cold. He will occasionally see us reading the blog and probably sees a photo of Mattie every now and then over our shoulder. We haven't talked about Mattie's loss of hair, but he was very determined to give Mattie a hat and this hat in particular ...
We are always thinking of you and are aching with you, too. You and Peter are truly Mattie's angels on earth. No matter what the future might hold, you are making the most of every moment with Mattie and his life is so much the richer for it. John, Christopher, and I have a favorite saying -- "I love you every minute of every day and every moment." In those darkest times when Mattie is unhappy and difficult and, most likely, scared beyond all imagining, I hope it is of comfort to know that at some level, he knows that you love him every minute of every day and every moment. And all of us are with you every moment, too." I think an unsolicited gift from a child to another child is so meaningful and special. Which is why I felt the need to capture that sentiment here. In addition, I just love Mark's saying, I love you every minute of every day and every moment. That is indeed how we feel about Mattie, it is just unfortunate when fighting cancer, you need to spend so many minutes of every day fighting such nonsense as health care systems and a host of other things.
The second e-mail I received from a woman I do not even know. Virginia B. found our blog through her community's listserv. She shared with me the following, "I am a mom of an only child as well. I can only imagine the horror you must be living. I recently discovered this blog through the Beverely Hills list serve and live in Alexandria. My son and I pray for you all each night. I wanted to share something with you all in hopes of giving a further voice to your terrible nightmare. A college friend, too has a child suffering from cancer and she shared this with me..."
Thank you Virginia! This is a great story and analogy! I end tonight with the story of The Strength of an Egg!
The Strength of an Egg
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make. An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength. That is why parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
~ Juliet Freita
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