It's hard to know how to begin this post...knowing what I'm going to talk about...just hard to put the words down on paper. So I'll just jump in....lately, it feels like Kael is disappearing. He is still before us – physically. I can still hold him, listen to him breathe as he sleeps – but it is happening.
“REGRESSION...LOSS OF SKILLS”
These are the words you read about when you first get the diagnosis. But in the beginning, those words are usually trumped by the phrase “SUDDEN DEATH”. After the shock of the “sudden death” phrase wears off, you begin to think about regression. But you look at your baby...and see him, despite all the odds, learning to talk and walk – maybe a little behind his peers, but not much.
So you spend the first couple of years after the diagnosis breathing a little easier – thinking that you dodged a bullet. And then, one day, you pick up a book – a favorite of your child's – and you read it, expecting the excited shouts of “BIRD” “HORSE” “CAT” (and every other animal in “Brown Bear, Brown Bear”), and instead....SILENCE. So you look at your child – and you watch his lips quiver as he tries to say the word “TEACHER”, which he used to be able to say..and instead, he softly says, “TA” as drool drips down his chin...and it hits you. You start realizing that every single activity that he used to do a year ago, he now cannot do as well or cannot do at all. And for a moment, all of the oxygen leaves the room.
We have made peace with the fact that our beautiful boy is never going to be normal (before you write me that I need to believe that he will be healed – I do and he will, at least, someday – but I am dealing with what is happening now ). But it seems like every time we accept what God places before us – we are dealt another blow. “Oh, you thought that was bad..well, how do you like this – WHAM!”
I have learned through this that it is best not to compare my cross to someone else's...never to say, it would be easier if Kael had (insert sickness) instead of Dravet syndrome. But I do know that what is difficult about Kael's disease is that there is no real action plan. It's not like the doctors are telling us, “Well, we'll try this type of chemotherapy...and if that doesn't work, then we'll try radiation. And if that doesn't work, then you have three years, tops.” Instead, we have nothing to work with. Oh, there are meds. And each time we try something new, we get our hopes up... ”Maybe this will be it!” and for a few weeks, there might be a difference. But then we lose control and we're back to night after night of watching our son go through torture. And even if we did gain control of his seizures, that doesn't mean anything. Sometimes I tell myself maybe we are better off that Kael is doing so poorly. I have read many stories in recent years of children who had finally started doing better and then, “WHAM!” Their parents wake up to find their child dead. So just in case you weren't having a hard enough time dealing with the constant seizures and the loss of skills, just when you think things are getting better, that is when you will probably lose your child? So you see why I say this disease gives you no action plan. It's just hang on...don't get too comfortable...don't start breathing easy...just scramble to survive and when the game changes, you better be ready.
So back to my original thought...he is disappearing. So how do I deal with that? This is my struggle. During the big events...like when he was on a ventilator (twice) fighting for his life, or during the countless hospitalizations for status seizures, I had nowhere left to go but to God. Life stopped and we were by his side in the hospital – that was our life. But this day to day – where I'm looking death in the face while having to change my baby's diaper, or having to teach my 9 year old English after just realizing my five year old can't say the word, “Turtle” anymore – this is my cross. Dear God, How....how can I bear it? Some days I cannot...and I just shut down. I still do what I have to do -at least the bare minimum. But I am lost inside myself. And I am bitter and angry and jealous of my friends with “normal” kids.
I don't know if I'll ever conquer the despair completely. To be so eternally minded that I look at my disappearing child and absolutely trust God that He knows what He is doing. But what I can do is hang on to the hope that tomorrow, I might be able to trust Him a little more than I can today. And though I have said this before on this blog...I cling to what I know. I KNOW that God loves Kael more than I do. I know that nothing is happening that God did not ordain. I know that suffering has a purpose and a place in this life. I know that great things will come when we embrace our suffering and turn it over to the one who owns it all anyway. And...I KNOW that my child is not JUST A VAPOR. He may seem to be fading before my very eyes...but he is still there....all of him. He is a unique and totally whole child of God...with the same dignity as anyone else on the planet. Dignity that is God-given and ordained. And that dignity will remain the same even if he does not speak, or walk, or even stay conscious.
And most importantly....I KNOW THAT THIS IS NOT THE END OF THE STORY.