Sunday March 25th Update

It’s Sunday night. Tomorrow marks four weeks since I took Liam to the pediatrician to get reassurance that my son’s 10 days of excessive sleepiness and lack of appetite was “nothing,” only that wasn’t the news I heard. Instead, I heard that the pediatrician wanted to send Liam for a blood test, chest X-ray and abdominal ultrasound. The pediatrician didn’t tell me to immediately go to the hospital to have the tests done, yet that’s what I did. The minute I left the pediatrician’s office with three prescriptions in hand for three tests that would reveal the silent invader that was trying to take over my son’s body, I just knew that something was wrong. I don’t know why, but I just knew. When I arrived at the hospital, I was told that Liam could get two of the three tests, but the most important one, the ultrasound, would have to be scheduled for another day. The details are too painful for me to relive right now, especially knowing that I’m heading into some very tough weeks, but I managed to get the ultrasound that evening…after a several hour wait..all while trying to entertain Liam and make him comfortable with the situation. After two pregnancies, I’m used to the rhythm of a normal ultrasound. I know when things are going along smoothly, and when they’re not. I knew when the technician was taking too many measurements that there was something wrong. I knew when she wouldn’t answer me with a straight answer that there was something wrong. I knew when she told me she was going to do me a favor and get the radiologist to read the scan immediately instead of making me wait until the next day for a reading, that there was something wrong. I knew. But I had no idea what it would be like to receive the news that I did. And I didn’t know what it would be like to keep receiving bad news after bad news for a week. I don’t like to relive the week of diagnosis. It’s just too painful and thinking about it doesn’t help anyone or anything. I suppose I’m thinking about it now because I’m wondering what other people do in this type of situation. Would they wait and have the tests done by following proper procedure and scheduling appointments during business hours? I feel like I failed my son because I didn’t realize sooner that there was something wrong. If I had taken him to the doctor on Tuesday, the day I first called to ask if he was going through a growth spurt that would cause excessive sleepiness, would it have made a difference? OK – I know it wouldn’t have…but there are times….like right now when I’m vulnerable because I’m thinking about the tough weeks ahead…that I let my mind wander. But then I look at Liam who had the most amazing weekend with lots of love and laughter and RUNNING…yes…RUNNING from one end of his new home to the other….that I have the strength to push those fears aside and get ready to wash my hands. Wait – he’s 2 ½…and I’m using him for strength? That’s what’s amazing about my son…he’s the one who gives me the strength to fight like I’ve never fought before. If only you could spend the day with him, I think you’d be totally amazed at him. The first week Liam was diagnosed, a necklace appeared as a gift. The necklace is made of beads and has three pendants hanging from it. Each pendant has a word engraved. One says, “Imagine.” One says, “Believe.” The third says, “Peace.” When I first saw the necklace I almost threw it away because the words made me sick. But now I can wear the necklace because I truly do feel all of the things those pendants quietly but resolutely declare. And when I’m having a down moment, I grab those pendants and rub them to feel the engraved letters under my fingers.