Every third week in March the teacher talk in our school building includes plans of trips to Baja and books lists to resume. When asked what the Remings would be doing this spring break, too tired to go into details, my reply was, "nothing." This is usually followed up by our colleagues' commenting on how nice it will be for us to rest and relax.
We can only dream.
First of all, our daughter has now turned into an official pill. They don't call it the terrible two's for nothing, but when your sensory system is out of whack, you can't communicate, and your body is constantly fighting infection (not mention sleep deprivation) the word terrible hardly defines it.
Faith's latest stint is pulling out her trach. *sigh* This no longer terrifies me as the thought of it once did, but I do get nervous thinking about it happening when we are not around. (Remind me to tell you a story of this happening about a month ago- we did have a scary event where the little trust I had in other people taking care of our daughter is now next to none.)
Nevertheless, we are getting help. As I wrote last week, we had a sleep study on the calendar which would result in an appointment with a much anticipated "sleep specialist."
After one too many TERRIBLE nights, we came to the conclusion that this insane situation we find ourselves in night after night cannot continue. We cannot keep having doctors telling us to "create sleep logs" or "to re-examine our sleep hygiene" (and no, that is not a made up word, and yes, I have had a doctor tell me those exact words).
So once again my dogmatic husband put his foot down, called Faith's doctor and two days later I was standing in a room face to face with someone from "The Sleep Team."
Yes, you heard that right my friends; THE. SLEEP. TEAM.
I am not even going to go into why this mysterious "Sleep Team" was not consulted MONTHS ago or why it took us being abrasive and pushy in order to get an appointment, because at at the end of the day we were there, and that's the closest we've ever gotten to alleviating this problem.
I won't bore you with the details of the appointment but when suggestions such as "maybe she needs white noise in the background" (to which my mom, who came along, replied, "yeah but don't you think the ventilator is loud enough?") or perhaps our nightly rituals are not conducive to Faith's healthy, yes here is that word again, "sleep hygiene," I was sure that all hope was lost and we reached yet another dead end.
And then something happened. Whether is be the desperate look in my eyes, and exhausting tone in my voice when I replied "so now what?" or the fact that while we are having this conversation keeping my child intact was like wrestling an alligator, the woman clad in white
realized that this is bigger then "sleep hygiene" or weighted blankets, that we needed help and yes, that help was the form of a little white pill.
OK, I know that this miracle pill might not be "The Answer" but it is an answer, and it's all we have right now.
So tonight is the sleep study. Thursday is the bronch.
And somewhere in between we hope is lots and lots of sleep!!!