Saturday, February 12, 2011

Saturday, February 12, 2011

Tonight's picture was taken in September of 2003. Mattie was a ball of energy then and though he did not like having to sit still to eat, he eventually got the hang of it. As you can see in this picture, he clearly fed himself, as evidenced by the food all over his face. It takes a great deal of patience to watch a toddler feed himself. After all it can be a very messy process and it can also take a while. However, over time I learned the importance of Mattie's independence and self initiation. It would have been much easier if I controlled the process and fed him, but then I realized Mattie would have missed the opportunity to develop his own skills on his own time frame.


Quote of the day: No one is exempt from grief. ~ Gregory Maguire


I woke up this morning, almost dreading the day. I have been preparing myself mentally all week for the fact that Peter and I would be cleaning out Mattie's room today. Cleaning out is a relative term. When I say cleaning out, I literally mean going through the numerous boxes and bags of things that completely filled his room. The dimensions of Mattie's room are 14x16 feet. However, picture half of this space absolutely piled high with things. In fact, over half of the room looked like a wherehouse rather than Mattie's bedroom. Naturally Mattie's room never looked this way when he was well, but through his illness and certainly in his death, we tried to pile all his belongings in one place.

Peter and I worked on Mattie's room for seven hours straight. Certainly cleaning out our walk-in closet last weekend, helped us organize things today. However, by the end of this process we donated over 14 large garbage bags full of things to Goodwill. There were aspects to going through toys, Mattie's school book bag, Mattie's books, clothes, shoes, and collectibles that were totally challenging and depressing. Peter came up to me at one point and said that today was much harder than the cleaning out we did the past two weekends. He said he felt as if he were dragging through the process. I related wholeheartedly, because it isn't easy saying good-bye to your child's things, especially since these things are our only physical connections to Mattie now. If I had taken on this project right after Mattie had died, I would certainly have been unable to handle it. However, now that I am one year and five months into the grieving process, I know that there are some things that I can give away, because they no longer tie me to Mattie. Despite my huge hesitation about this before, I can now say good-bye to Mattie's commode and IV pole. But it took me all this time to get to this place. While going through certain things of Mattie's today, I realized I couldn't process them, and therefore had to keep them and will revisit them on another date. His school bag was such an object. Mattie kept all sorts of things in his book bag, so reminiscent of Mattie (and his mom, since we both were pack rats). So basically I kept the bag and all its contends. I also put together a plastic memory bin of Mattie this afternoon. Some of the contents in the bin, I photographed below, because each one has a story to tell.

This is one of Mattie's box art projects. He created it during Halloween of 2008 in the hospital. As you can see it was a haunted house, with ghosts and a witch. It was actually an extremely creative project. Though we disassembled the box today, I kept the ghosts and other pieces of art on the box as reminders of Mattie and his creativity.

Some of you may recall Mattie's Roach! This roach came with us on EVERY hospital admission. Mattie and his art therapists created this beauty (I am being sarcastic!) out of model magic and then painted it. Mattie particularly loved freaking me out with it. This roach has a story to it of course! During one of our discharges from the hospital, I must have forgotten to pack Mr. Roach, and accidently left it in the room. So the next admission, as I was unpacking Mattie's things, he could see his model magic friend was missing and he wasn't happy about it. For weeks, he pined over the roach. Until one day, as we were talking to one of the residents about Mattie's art work, we mentioned the lost roach. She paused and then told us she swore she had recently seen the roach. So she left Mattie's room, and minutes later came back with the roach in hand. The roach had left the PICU and was now on display in the transplant unit. The nurses there liked it and adopted it. They weren't happy to part with it, but understood how much it meant to its creator. So this roach got around the fifth floor of the hospital. The story and memory of the roach can still get me to laugh.

When Mattie lost his third tooth (he was well at that time) he made a request to the tooth fairy for necklaces made out of pasta. I am not sure where this idea came from, but he was very certain that is what he wanted. He did not want money or a toy, but handmade necklaces. I kept these necklaces over the years and now they are in Mattie's memory bin. To me they speak to Mattie's whimsical side.


















Just like in the Olympics, where athletes receive medals for their performances, Mattie too received medals in the hospital for his amazing physical therapy work and bravery. Each physical feat he performed was acknowledged. It was his incentive system that Linda (Mattie's childlife specialist) helped to design to keep Mattie motivated. Though these Disney medals may look cute, there was NOTHING cute about what he had to do to earn them. Mattie worked extremely hard for each pin you see here. The bravery Mattie showed as he tried to learn to reuse his arms and legs again after limb salvaging surgery was remarkable. In addition, the scans, procedures, and numerous sedations Mattie underwent were grueling and scary. However, after each ordeal, he proudly added a pin to his medal collection. Needless to say, these medals to me speak volumes to Mattie's courage, capability, and determination and therefore had to be included in his memory bin.

One of the last things I wanted to share with you was Mattie's Georgetown University Hospital ID badge. Not every child gets one of these, but since Mattie liked Linda's so much, she promised him one day he could get one of his own if he complied and got the scans and xrays he needed. He did, and the rest is history. Though the ID represents Mattie's time in the hospital, I did add it to his memory bin. Because the ID symbolizes to me Mattie's great ability to negotiate and also the beautiful relationship he had with Linda. Linda made life bearable for the three of us in the hospital, and I know despite the pain and torture Mattie received there, his closeness and bond with Linda inspired him to always go back for treatment.

As I look at Mattie's room tonight, it still looks like a child lives there. It most certainly does not look like a guest room. Which I am fine with. However, what I can visibly see is that Mattie's room is returning to the way it used to be and it is no longer looking like a sick room.