Normally I would be out running with my girlfriends this morning for our usual 10 km run but due to Hurricane Sandy we had to abort our plans last night due to high winds. In our area the wind was howling last night and causing the house to creak and moan as if it was a living, breathing organism fighting against the wind outside. The forecast indicated that winds were expected to reach up to 90 km/hour but I couldn’t find anything this morning to say what it got up to. Either way, there was no wind damage this morning and we still had power so all good. The newscasters say that whatever we are going through up here in southern Ontario is pale in comparison to what the US East coasters are going through. I do have an employee who works remotely in New Jersey and right now he has no power but at least he still has communications through his cell phone and is fine otherwise.
So in addition to listening to the howl of the wind and the moans of the house, it was my turn since I knew I wasn’t running to be on-call for Reilly in the night. Up until a few weeks ago she was in a good sleeping routine whereby she slept almost always throughout the night, unlike her sister London who would have one of us, usually me up once for a quick pee. Unfortunately when Reilly gets up it rarely is brief. We have gone through many cycles of sleeplessness with her and this recent cycle is far by the best if I can say that. This cycle can involve a handful of times where she wakes up and sometimes one of the wake-ups involves being up for her 30-60 minutes+ depending on the situation. Due to her condition it is not possible to have her cry it out like a normal child nor is it possible to rationalize with her given her cognitive skills. So as soon as we hear her stir, cry, or call out in her own way we immediately jump out of bed into hers and cuddle her as tightly as possible, hoping/praying that her neurological system will quickly respond and fall back to sleep. In this sleep disturbance cycle most times this works within minutes. If we don’t respond right away due to being in a sleeping stupor we increase the odds of her becoming wide awake and it taking a lot of patience to get her back down (sometimes even when we respond right away we end up in this mode anyway). Last night she awoke before midnight which is unusual so I crawled into bed with her and within minutes she was back to sleep. I decided I was just going to stay with her for the night for it was comfortable and I hoped that my presence near her would allow us both to sleep through the night from then on. Nope. Just after 1.00 am she woke again and this time she was up for a total duration of an hour. I don’t know what woke her up whether it was just this crazy on/off switch in her head or whether it was a seizure for she had two minor seizures about 15 minutes after we were both awake. Our saving grace is that when Reilly is awake she does make noises but they are rarely screams of agony or fits of being possessed (been there, done that), instead they are squawks or non-verbal chatter that is irritating to the ear only because you would like to sleep but given what we have experienced in the past very tolerable. Unfortunately though as innocent as they were they woke up my husband and he knew that we needed to resort to drugs based on the quality of chatter coming from her so we resorted to a small dose of Chlorahydrate with apple sauce. She gobbled it up and within 15 minutes (for a total of about an hour of being up), she was fast asleep.
We haven’t had to use this drug in months but my husband and I are so in tune to when we have passed the point of no return, knowing that if we don’t she could be up for the rest of the night or until 4 or 5 am which doesn’t work for anyone. So we respectively use this drug under the full approval of Reilly’s neurologist. And it has no apparent side effects for her when we have to get her up in the morning!!!! Unfortunately it doesn’t do anything for the puffiness in my face or dark circles under my eyes but it does give me a fighting chance to get through the day along with a cup of coffee or two. One of my girlfriend’s sent me an article recently saying that lack of sleep makes you sick and also keeps the pounds on, for she is going through a tough spell with her three young children. I think I could have written that article, lol.
I sent my mom an SOS a couple of weeks ago asking her to help out this week for I knew this sleep business was taking its toll on us and she gladly obliged. She has volunteered to be on night duty the next two nights which will be awesome but we will still have to be on alert if Reilly get into this ‘awake mode’ but any help on this front will be great. My mom made an interesting comment this morning. She understands the challenges involved with our life and is quite supportive and wonders how we can continue at this rate. I told her that this sleep cycle will probably pass and hopefully sooner rather than later but what choice do we have? I know her comment was somewhat rhetorical but seriously what alternatives do we have? If we were to secure a night nurse I would not want them cuddling with Reilly for that is what works 90% of the time (the pressure is what works and also she knows that her parent is with her like any other kid). Can you imagine if your normal child is sick and you take them to a stranger for them to look after them. We have tried the nanny route and that didn’t go over well. So that leaves us with only one option that we can see right now. That is to share this night time responsibility with my husband, try to keep our sense of humor, dial back on certain activities and keep the hope alive that this phase will pass soon.