Benign Familial Sleep Onset Myoclonus; at least that's what the doctors call it, is characterized by repetitive muscle twitching while sleeping. It can also be characterized by intense fear and worry in parents of newborn babies.
Although the diagnosis is a mouthful and often will bewilder anyone who hears it, the prognosis is thankfully cheerful and non-worrisome.
We brought our newborn daughter home last weekend only to encounter a rhythmically shaking sleeping child. To put it in simple terms we were freaked out.
Being admitted to Children's Hospital with a 4 day old is terrifying. All you want to do as a new parent is relax at home with family and friends with your new baby but instead you are tossed into a whirlwind of emotions and what ifs. What is even more terrifying is when you realize that your 4 day old daughter needs to be hooked up to an EEG machine to be tested and observed overnight.
For those of you who are unfamiliar with medical devices an EEG is a brainwave scanner that requires the patient to have electrodes glued in multiple places on their head and results in them looking as if they are wearing a multicolored Predator dread lock wig. It measures the electrical activity along the scalp to record the voltage fluctuations in the brain resulting from ionic current flowing from the neurons in the brain and is typically used to determine whether a patient has Epilepsy or just muscular convulsions.
Along with the inconvenience of not being able to step more than three feet from the machine with your newborn daughter comes the feelings of dread and utter despair due to the fact that you don't have any answers. Even if you did you can't do anything about it.
Minutes turn into hours and a single night seems to be a week in this tiny room where you are questioning everything from your faith in God to your previous actions that have resulted in this demonic karmic retribution. If I pray will anyone listen? Why should God answer this prayer? What if it is epilepsy? How can she have a normal life? What did she do to deserve this? Can we cure it?
You start thinking about joining support groups and what kind of schools there are that will accommodate your child while giving the best chance at a good education. You think about how terrible preteens are and the name calling she will have to endure. How will our son handle this? How will this change HIS life?
These are just some of the thoughts I had. I've never had anything happen worse in my life than spending that night there under those circumstances and I hope we never have to do it again.
There were moments where my wife and I could relax and laugh and just hold her close to the bed but they were fleeting when we started talking about the what if scenarios. The questions returned. Can she ever go to sleep overs? What about movie theaters? Will she play sports and learn like all the other kids? How will we as a family deal with this? Suddenly all we knew was questioned and we didn't even have an answer.
Although it seemed like an eternity our answer came pretty quickly in the form of a wide eyed thumbs up from the very compassionate doctor. I have never met a more cheerful and reassuring doctor in my life. A God send was this man who walked with a cane and has first hand experience what it is like to be in our shoes; on our side of the bed.
I honestly never thought I could be any happier than when I heard the words "It's absolutely nothing you need to worry about. She is a beautiful healthy baby and you can go home."
I can now say that I have been enlightened as to how a parent of an epileptic child must feel and I want to acknowledge how strong they must be to handle that and progress and live life. I am sure it gets easier to stomach once it has set it and you develop some sort of routine and understanding but I am sure that the feeling of helplessness never passes along with the worry you feel for your baby. You all have my dearest sympathy and thoughtful support because of the taste I got of what you have to endure everyday. I am sincerely in awe of your abilities.
So Benign Familial Sleep Onset Myoclonus it is (say it with me people). I will learn it and remember it always as the way Aria came into our lives and immediately stole the show. Not only did she steal our hearts but also scared the crap out of us from day one. Every time she sleeps and does her "dance" as we call it I will repeat it as a mantra just to reassure myself that she is okay, she is perfect and she is beautiful; and she didn't even need lessons.
Now my wife notices that I too twitch a bit when I sleep so I guess it is all my fault ....... just as I'd expected.
