My honey believes I am going through a crisis. Very profound. To him I just want to say "Duh!" But he believes I am struggling because I have based so much of my identity these last five years on being the parent to a handicapped kiddy. I don't necessarily disagree. But it begs the question, if the same thing happened to one of my healthy children, would I be this devastated? I sincerely, and devoutly pray I never find out.
As I started a few posts back, the Shalebug was born handicapped. After they transferred him to the Stollery they ran an unending barrage of tests on the poor little bug. When I arrived six hours later, I was shocked by how he looked. He was hooked up to a ventilator, his feet, well they horrified me, and he was HUGE! 9lbs, 1oz. And by far the biggest baby on the block!
Entering the N.I.C.U was terrifying. Row after row of sick infants. Frightened parents. Machines that alternated between a soft hum and a shrill beep, screaming out emergencies. I was scared, and devastated and grieving all at once. And all I wanted was to be able to locate my child in that sea of sick and dying babies.
Well, that night was the start of our all too brief journey together.
It took eight days, 12 specialists, a million procedures and examinations, hours of me listening to the doctors arguing about what the heck was wrong with my baby and it all boiled down to a resident sticking a kleenex in my child's eye before they handed me a diagnosis:
MOEBIUS SYNDROME PLUS. Moebius is a rare disorder characterized by lifetime facial paralysis. You see, I commented to a neurological resident that the Bug never seemed to blink or close his eyes. He got all excited, grabbed a tissue, spit on it, made it into a point and then jabbed it into Shalebug's eye. He just about peed with excitement. He then raced off, grabbed his primary and came back with about a dozen people in tow. When I asked what was Moebius, they only told me that the Bug would never smile or frown. I later found out Shalebug was also unable to blink or move his eyes from side to side. Or swallow. It was after this diagnosis the pieces of his puzzle fell into place.
The next day he was diagnosed with Pierre Robin Sequence. PRS is characterized by a combination of three features, possibly due to the underdevelopment of the lower jaw. The lower jaw is abnormally small, the tongue is displaced downwards, and there is a cleft palate. Shalebug's tongue had a tendency to ball up in the back of his mouth, causing his airway to block.
Then his M.R.I. came back, reporting the complete absence of his Corpus Callosum. The tiny bundle of nerve fibres that connects the left and right hemispheres of the brain. The same part they snip if you have severe epilepsy. Apparently, you can be normal if you only have some of the Corpus Callosum but you are pretty much screwed if you have none. Lucky us. The M.R.I. also reported brain abnormalities that would more than likely lead to severe developmental delays.
And of course, there were his feet. His beautiful toes. I'll admit at first they freaked me out. But I quicky got used to them and they became a great source of amusement to both of us when I nibbled on them!
So after four months, a g-tube insertion, a fundoplication, bilateral tenotomies, casting correction (all unsuccessful), and a tongue-lip adhesion; they let us go home and start our lives. As long as he was hooked up to an oxygen sat moniter, an apneic moniter, a suction machine, and of course, his feeding tube. Life was scary as hell at first, but it got better fast.
I learned through all of this to relax. And fight for the little man who was invisible to everyone. He couldn't speak, he didn't have common body language and he was really easy to ignore. He hardly could move at for the first two years.
I hope this explains why I submersed myself in the Shalebug. My children, my husband and I are better for it. I believe our extended family is as well.
Which is why I am currently suffering from an identity crisis. No longer the mother to the invisible boy. No longer the mother to my baby. I have all these skills and nothing, no one, to apply them to.
For a little man who never said a word, not once, he spoke volumes to me. We had whole conversations, the two of us. And that is what I miss the most. My bug.