Sept 11th, Scattered Thoughts…

It’s Monday night. It’s the night before. Tomorrow begins another odyssey. Tomorrow afternoon we’ll trek to the hospital so that Liam can be checked out and over to be cleared to receive anesthesia on Wednesday for his CT scan. At the check-up, we’ll receive a syringe filled with the horrible-tasting contrast with the instructions to mix it with 8-ounces of clear juice and have it completely ingested two hours prior to his CT (it’s set for 11:30 a.m.) but not too much before because you don’t want him to pee it out. This is the lovely tasting potion that takes our collective efforts of cajoling, pleading, reasoning, joking, tricking, hassling, begging, and ultimately urging Liam to drink. We’ll also pick up the equally horrible tasting iodine drops he has to take to protect his thyroid from the radioactive dye that’s injected into him at 2 p.m. on Wednesday in preparation of his MIBG scan on Thursday. The iodine needs to be taken two hours before the radioactive injection. But as I’m writing this, I’m hearing the words, “Houston – We have a problem” in my head. We have a problem because if his CT is at 11:30, he won’t wake up until around noon. And if he’s supposed to receive the dye injection at 2, I’ll have to force him to choke down the horrible tasting iodine as he’s coming out of an anesthesia slumber. The last time he drank the iodine drops he threw up which prompted a late night visit to the ER. That trip was the one where Liam was surrounded by a circle of nurses and doctors cheering him to “drink, drink, drink.” He did…only after it was mixed with sweet cherry syrup and he clearly got the picture that this was a not an optional activity. There are all these “little” things to deal with over the next two days which serve as great distractions from the bigger picture news…what the scans will show. The CT and MIBG scans will be good indicators (but not totally definitive – a four-hour urine collection and bone marrow aspirates complete the picture) to make sure he’s still clear of cancer. Every 90 days for the next two years we’ll have to undergo the regimen of these four tests. Every 90 days we’ll be on the pins and needles ride. Every 90 days we’ll be plunged back into the deep waters where you wonder if you’re going to be swallowed up or continue to swim. I’d like to say it’s not fair, but then again who asked me if it’s fair? And really, who cares? It just is and our job is to keep moving forward and keep Liam on the path of being Liam.

This past weekend Liam had a play date with Ella, one of his playmates from preschool. Ella arrived and we immediately set about a finger painting session. Liam and Ella sat next to each other on a bench at a picnic table shaded from the sun by a giant umbrella to protect Liam’s Accutane-sensitive skin. (The warning says to keep out of direct sunlight when taking Accutane, not an easy thing to do in the summertime to a 3-year old.) Liam didn’t want to sit on the other side of the table. He wanted to sit right next to Ella. And as they were sitting next to each other, Liam would lean over and whisper in Ella’s ear and they would both giggle. It was the most precious sight to watch my sweet son who has been through so much enjoying a perfectly innocent moment with an equally innocent child. The play date really got going when Ella discovered Liam’s drum set. The two of them gleefully drummed to the beat of their own drummers standing on opposite sides of the drums. They were thrilled and I couldn’t stop equally beaming and crying amidst the dual drum solo. Later in the day we were visited by some dear friends and their four-year old and almost six-year old. Liam played, and played, and played until he told me that he was “so tired” and needed to take a nap. I don’t think I will ever take for granted the beautiful sight of a child just being a child.

When I reflect on what Liam has been through the past 6 ½-months, it’s dizzying. We’re lucky to have him here. Very lucky. It’s even more amazing to see how Liam is still sweet Liam. But it makes me very sad that he’s a wiser Liam who isn’t quite as innocent. He asks a lot more questions now. He always accepts my answers, but he wants to know more. He wants to know why Dr. “Koosh-ner” wants to see more pictures of him. He wants to know why he has to “give a little blood.” I can see where these questions are going and I’m not quite ready. Liam and Ella have taken to hugging each other quite a lot recently. (And yes, they also do a lot of sibling bickering.) But to watch the two of them hugging is oh so bittersweet. I can’t imagine Liam without Ella or Ella without Liam. They are two peas in a pod and, because they’re only 20 ½-months apart, are like twins. What one does, the other one does. What one wants, the other one wants. Ella does everything Liam does and Liam wants anything and everything that Ella has.

Lately we’ve been doing a lot of dancing in our house. A toy plays a song and Liam immediately instructs us all to dance. And dance we do. Tonight we danced in the kitchen after Liam forced a toy to play its reward song. Over the weekend we danced to the opening of Curious George and danced and sang to the opening of Caillou. We dance for Liam but sometimes it’s so hard. But Liam grounds us and reminds us to live in the moment. The strange thing for me is that I don’t have a hard time when I’m with him. It’s when I’m away from him that I find it so difficult to live in the moment. We visited the fire station tonight. We go at least twice a week. And the routine is the same…Liam walks in as if he owns the place, he does a quick check on his locker to make sure everything is OK, and then either tries to find a willing firefighter to play foos ball with him or heads to the kitchen for some “fireman ice cream” (ice cream served in a mug). We love our guys for treating Liam like just a regular “guy.” They never treated him differently, opened up their hearts (and freezer) to him, and have always welcomed him with a “Hey Liam!” greeting. Tomorrow is a new day filled with new opportunities to enjoy, love and be loved by our children.