Quote of the day: "You can discover more about a person in an hour of play than in a year of conversation." ~ Plato
Mattie had another late night, he did not go to bed until after 1am, so waking up this morning was challenging. Today was our ONLY day off this week, since we return to the hospital tomorrow for a whole body PET scan. This scan will take over two hours, and because the machine is confining, Mattie will be sedated for the entire scan. It takes Mattie several hours to come out of sedation as well, and usually wakes up dazed, confused, and very agitated. So I am not looking forward to this, or the potential results I could hear. We have to be at the hospital by 8:30am, so this should be an entertaining morning for Mattie and I.
Mattie was invited over to Ann's house today to play with her children for a couple of hours. This was a wonderful diversion to our day. Ann's aunt Helen is visiting from Massachusetts. I had the opportunity to chat with her, and we want to thank Helen for giving Mattie the book, Captain Underpants. This particular book in the series features the character entitled, Professor Pottypants. Needless to say we read this book cover to cover when we got home this evening. This type of potty humor is right up Mattie's alley! How ever did Helen know? When I got to Ann's house, I got to see Katie's and Abigail's (Ann's daughters) dance costumes for their up coming performance. Katie's costume needed to be altered, so Helen and I took on this challenge, and we had a good time seeing Katie dressed up and chatting about the performance. Abigail's outfit is adorable as well, since she will be dressed up as a cute sailor. Helping Ann get the girls ready for their performance is something I look forward to later this month. These fun events take my mind off of my usual daily occurrences. As some of you know, dance was always an important part of my life growing up, so it is nice to be able to see the love for this art form expressed in the next generation.
Ann snapped a picture of the alteration process while Katie was demonstrating a move, so that we could effectively alter her straps. It was a fun afternoon for Mattie. Ann brought him ice cream and he was eating that in one breath and playing with his Nintendo DS in the other. Ann's children are trying to show Mattie how to play with this electronic game, because we suspect this may be a good activity for Mattie post-surgery. However, the majority of the afternoon was occupied with pretend play. Mattie and Abigail designed a building out of blocks and within the building they hid toy cars and animals. The moms played the bad guys, trying to attack the building and steal the cars and animals. However, none of us were successful! The kids always out smarted us.
Left: Abigail and Mattie. You can see the buildings made out of blocks behind them and the basket full of characters that we integrated into our play scenes.
Right: Mattie in front of his block creation. As you can see, in this picture, Abigail is missing. She went to her gymnastics class, and Tanja (a friend and SSSAS mom) and I remained to continue playing. Tanja and I really hammed it up. We played the bad guys, however, Tanja's bad guy was slowly being transformed from a boy into a baby. This baby was a riot because he was talking and causing trouble, yet drank a bottle, and needed a diaper change. Mattie loved this because the diaper talk inspired his potty humor. Tanja and I couldn't help but laugh at how much fun Mattie was having.
I appreciated the effort everyone made today to engage Mattie, to play with him, and to make him feel normal. None of this goes unnoticed! It is a remarkable and special feeling to see Mattie's friends including him in their activities, because I know a healthy child's natural instinct is to move around while playing. Which is something Mattie is quite limited to do.
On our drive home, Mattie said he wanted to tell me something. He said that he hated to break this to me, but that he doesn't like how he looks. He feels that he looks and acts funny and others notice it. I thought that was a profound statement since I never heard this before. He particularly doesn't like how he doesn't have hair. I told him that this was only temporary, but none the less, I haven't heard any of this for the past 11 months. It is interesting that it is surfacing now. Once I got out of the car, I jumped into the back seat with Mattie. I told him that he is entitled to feel however he does, but that I think he is adorable and handsome. I also told him that I will miss his cute bald head when his hair grows back. We had a tender moment where he understood that it is okay to be different, and that different is fine and special. None the less, this was a conversation that broke my heart, because my seven year old knows and observes that he is NOT like his friends.
When we arrived home tonight, we found a dozen Dunkin Donuts on our doorstep. JJ (our resident Jack Russell Terrier) delivered them to us. So before we went inside, Mattie wanted to head over to see our neighbor JP and his dog, JJ. JP just got back from his business trip to Spain and Italy, and with him, he brought some special gifts for Mattie. Mattie has a wonderful bull baseball cap from Spain, with horns included! Thanks JP for always thinking of Mattie! Peter met us outside as well and we all chatted. This evening, Peter went to a Nationals baseball game with a friend of his. I am happy Peter got to go out, despite the fact that it is pouring out! Mattie and I have had a quiet night together, reading books, and watching my least favorite show, SpongeBob. In fact, Mattie just transformed my kitchen sponge into SpongeBob. Lovely!
Mattie and I want to thank Pat for a wonderful dinner. Mattie actually ate very well, and really enjoyed the pasta and the broccoli! Thank you for supporting us!
I would like to end tonight's blog with a message from my friend Charlie, and a story about lightning bugs that was sent to me by Lana (one of Mattie's preschool teachers from Resurrection Children's Center). Lana also loves fireflies and I love the story she shared with me, I hope you enjoy it too!
Charlie wrote, "What an exhausting day. I was overwhelmed just reading the blog. So many hours in the hospital with the surgery yet to come. How wonderful that Mattie was able to reconnect with Brandon and Jocelyn at the hospital; having them join his play therapy was definitely to the good. The more times and ways Mattie can play this out, the less frightening it will be and hopefully the better his recovery will go. Although no one can really be prepared for the situation post surgery you and the staff are doing their best to come as close as possible. I was definitely heartened by reading about Mattie's walking over to get his cars and then his returning ability to entertain himself for a while. As always, it speaks volumes about your parenting and ability to nurture every bit of Mattie's returning need for independence. You are an amazing parent and spokesperson and you have taken a leaf from Rabbi Kuchner's book with regard to "what do I do now?" by going forward with courage and determination for the best possible outcome."
The Lightning Bugs Are Back
By Anna Quindlen
The lightning bugs are back. They are small right now, babies really, flying low to the ground as the lawn dissolves from green to black in the dusk. There are constellations of them outside the window: on, off, on, off. At first the little boy cannot see them; then, suddenly, he does. "Mommy, it's magic," he says.
This is why I had children: because of the lightning bugs. Several years ago I was reading a survey in a women's magazine and I tried to answer the questions: Did you decide to have children: A. because of family pressure; B. because it just seemed like the thing to do; C. because of a general liking for children; D. because of religious mandates; E. none of the above.
I looked for the lightning bugs; for the answer that said because sometime in my life I wanted to stand at a window with a child and show him the lightning bugs and have him say, "Mommy, it's magic." And since nothing even resembling that answer was there, I assumed that, as usual, I was a little twisted, that no one else was so reductive, so obsessed with the telling detail, had a reason so seemingly trivial for a decision so enormous. And then the other night, yellow bug stars flickering around us, my husband said, in a rare moment of perfect unanimity: "That's it. That's why I wanted them, too."
I looked for the lightning bugs; for the answer that said because sometime in my life I wanted to stand at a window with a child and show him the lightning bugs and have him say, "Mommy, it's magic." And since nothing even resembling that answer was there, I assumed that, as usual, I was a little twisted, that no one else was so reductive, so obsessed with the telling detail, had a reason so seemingly trivial for a decision so enormous. And then the other night, yellow bug stars flickering around us, my husband said, in a rare moment of perfect unanimity: "That's it. That's why I wanted them, too."
The lightning bugs are my Madeleine, my cue for a wave of selective recollection. My God, the sensation the other night when the first lightning bug turned his tail on too soon, competing with daylight during the magic hour between dusk and dark. I felt like the anthropologist I once met, who could take a little chunk of femur or a knucklebone and from it describe age, sex, perhaps even height and weight.
From this tiny piece of bone I can reconstruct a childhood: a hot night under tall trees. Squares of lighted windows up and down the dark street. A wiffle ball game in the middle of the road, with the girls and the littlest boys playing the outfield. The Good-Humor man, in his solid, square truck, the freezer smoky and white when he reaches inside for a Popsicle or a Dixie cup. The dads sitting inside in their Bermuda shorts watching Car 54, Where are You? The moms in the kitchen finishing the dishes. The dull hum of the fans in the bedroom windows. The cheap crack of the wiffle bat. The bells of the ice-cream truck. The lightning bugs trapped in empty peanut-butter jars that have triangular holes in the lids, made with the point of a beer-can opener. The fading smears of phosphorescent yellow-green, where the older, more jaded kids have used their sneaker soles to smear the lights across the gray pavement. "Let them out," our mothers say, "or they will die in there." Finally, perfect sleep. Sweaty sheets. No dreams.
We were careless. We always forgot to open the jars. The lightning bugs would be there in the morning, their yellow tails dim in the white light of the summer sun, their feet pathetic as they lay on their backs, dead as anything. We were always surprised and a bit horrified by what we had done, or had failed to do. As night fell we shook them out and caught more.
This is why I had children: to offer them a perfect dream of childhood that can fill their souls as they grow older, even as they know that it is only one bone from a sometimes troubled body. And to fill my own soul, too, so that I can relive the magic of the yellow light without the bright white of hindsight, to see only the glow and not the dark. Mommy, it's magic, those little flares in the darkness, a distillation of the kind of life we think we had, we wish we had, we want again.
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