Normalcy

Cubby's first four weeks have gone by fast. And, to be honest, they've been a much better first-four-weeks than the first four weeks I had with Buddy.

We didn't know Buddy had Williams syndrome until he was diagnosed at 9 months. But during those 9 months, there was a nagging thought in the back of my mind, "Surely this can't be normal." His feeding difficulties, his SVAS, his sleeping difficulties, his weight-gain problems, his kidney problems, the way he didn't seem to be "getting it," the constant crying, the colic that lasted way beyond when it was supposed to end . . . .

Taken one-by-one, a mother might think, "Ah well, that's just the way he is." But when it's one thing on top of another, it's difficult not to think, "What is wrong with my child?"

I once asked Huband if he thought I was out of it during the first weeks of Kieran's life. "Weeks?" said he. "Try months." I suppose he's right. Lack of sleep does tend to mess with one's mind and personality. Kieran didn't sleep longer than 2-3 hours at a time until he was about six months. He didn't sleep through the night until he was 15 months. And he still doesn't sleep longer than 8-10 hours at night (but I'm not complaining on that point--I'm just glad he's sleeping!).

Until we got Buddy's diagnosis and I realized that what we were experiencing really wasn't normal, I had a difficult time understanding how anyone would want--or could handle--more than one child.

My prayer during the pregnancy with Cubby was, "Please, Lord, just let him sleep." I can handle life much better when I'm not sleep deprived. The Lord graciously heard my prayer and gave us Cubby. From the beginning, Cubby has given me more than just an hour of sleep at a time. And last night, he slept for five hours at one time.

Cubby is also eating well and gaining weight. And I don't have that "surely this isn't normal" thought continually running through my head.

I hope, for the sake of mothers everywhere, that this is more on the normal end of the spectrum. And I hope, for my sake, that the lengthening of nighttime sleep continues.

Sleep Study

The Williams Syndrome Association offers a registry for research studies on WS. They just announced a study on sleep-related issues in people with WS, so I enrolled Buddy in it. This one involves answering several sets of questions about all things related to sleep (which I did while this was the view out my window) and filling out a sleep log on him.

We've taken him off the melatonin this week since the label suggested using it for two months, followed by a week of withdrawal. So, I'll keep him off the melatonin for the next week while I keep the sleep log. Already I'm remembering why we put him on it to begin with.

Blame Drew's Cancer

I'm not sure what to write about today. And I blame my writer's block on Williams Syndrome. Yesterday, I stumbled upon the BlameDrewsCancer--a site by a guy named Drew who found out ealier this year that he has Hodgkin's Lymphoma. In attemping to beat up on the cancer before it beat up on him, he started blaming everything on his cancer, and he invited others to do the same.

Lately, I've found myself doing the same thing -- not blaming Drew's cancer (although I may join the crowd--it's a handy excuse) -- but blaming things on Buddy's Williams Syndrome. He's not sleeping well? Blame WS. He takes forever to eat? Blame WS. He cries when we turn the mixer on? Blame WS. He doesn't consistently bring fingerfoods to his mouth? Blame WS. (It couldn't possibly be the fault of his mother who didn't want him to get food everywhere when he ate and so tried to keep his hands down by his sides as much as possible for quite some time.)

Although, obviously, some things can legitmately be blamed on his syndrome, it's difficult to know how much to blame on it. I don't want to blame so much on it that we don't require or expect enough of him; yet I also don't want to expect too much that he simply isn't capable of doing and end up frustrating us all. It's a fine line to walk--a line I'm sure we'll be figuring out how to walk on for many years to come. In the meantime, I'll just blame Drew's cancer.

FISH results

Today, the genetics doctor called to let us know that the FISH test results confirmed that Buddy has Williams Syndrome and that his calcium levels are in the normal range (meaning he doesn't have the hypercalcemia usually associated with WS).

I had read in various places that many WS parents use melatonin to help their child sleep better at night. With WS, it's not the normal child-wakes-up-once-in-awhile-at-night thing. It's that child can't settle down at night and continues to wake every few hours. For example, tonight, I put him down to bed at 8:30. At 10:30, he's still not fully asleep, although he's quieted down and isn't crying anymore. And he'll probably be awake and crying again sometime between 1 and 4 (if not several times). It's not that he can't fall asleep on his own -- he does fine during his naps. For some reason--which I haven't been able to pinpoint with all the reading I've done--WS kids just can't self-soothe very well and nighttime sleeping (or lack thereof) is a huge issue. It's difficult to explain the difference between WS sleep issues and a non-WS child who simply wakes during the night, but if you've been here during the evenings/night, you know what I'm talking about. And, quite frankly, the WS diagnosis was somewhat of a relief in this particular area because it means we haven't been doing anything wrong (at least in this area)--the issue isn't with how we've taught him to sleep (and believe me, I've tried everything to get him to sleep better at night--including seriously considering calling in a "sleep expert")--it's with him.

At any rate, I asked the doctor about giving Buddy melatonin to help him sleep better, and the doctor was fine with it. So tomorrow I go on the hunt for melatonin, hoping that it gives us all a better night's rest.