It’s been an interesting week of ups and downs so far. Sunday evening Ben had a rather nasty seizure cluster. It was a difficult evening, things didn’t improve much. However, Monday evening went really, really well. The best news is, we have made some wonderful progress in potty training. I have said all along that three years ago, I took a potty trained child into the hospital. Three unconscious days and four new medications later, I took home a critically ill child who was no longer potty trained. I have always said it was the medication. As we lower his Lorazepam, ALL of his skills increase, and at long last we are seeing an improvement in the potty training area. It’s early days, but we are starting to get excited that at last we can put diapers aside for the third (and final?) time.
Ben’s therapist is absolutely thrilled with his progress. Every week now she tells me how amazed she is, how much progress he is making. His balance, focus and coordination have all made huge leaps in the last couple of weeks. As Dave puts it, these days give rise to that dreaded “H” word-hope. What would our life be like, if Ben didn’t have to be watched every second? What if we didn’t have to lock and alarm doors? What if we didn’t have to lock cupboards? What if we could leave out technology items without them getting destroyed? What if we could relax, get a full nights sleep, live without constant anxiety for Ben’s safety? We have hoped before, and there is very little worse than crushed hopes-it is an utterly despairing feeling. And yet, and yet, hope springs eternal. God’s mercies are new every morning. We feel the blessing of it, even as we all feel anxiety as we let down our constant guard. It is a blessed time, and a strange time.
The month of January marks another anniversary for us. Sufferers of epilepsy are a superstitious lot, so I waited until the month was over to share our benchmark. It has now been an entire YEAR since Ben last spent the night in the hospital! Not even a full night in the emergency room. This is our miracle….This has not happened since he was two. Even as I write this, I can hardly believe it. There was a time when he was hospitalized nearly once a week!
We have been told, more than once, that Ben’s condition is not “consistent with long life expectancy”. We were once told he probably wouldn’t survive the next year. We were told his epilepsy would steal away his brain function until he was little more than a vegetable. We were told his nutritional issues would degrade his body functions until he could no longer survive. We were told the progression of his epilepsy was inevitable, and he would retreat further into his own world, and we would lose him in every way possible. What the doctors did not say, is that the power of prayer can change lives. Children can heal-perhaps this is not the miraculous healing we have all been praying for. This is not what we pictured when we began this journey of faith. I was going to write a book about miraculous, complete healing. Instead, this has been a slow, arduous journey. Ben is not completely healed, in fact, far from it. But never, never feel your prayers have been in vain. Ben is still with us, praise God. Not only is he with us, but doing far better than ever, far and above better than any of his doctors or therapists ever thought he would do. He continues to amaze, he continues to heal. This is not the miracle we pictured. But it is indeed, a miracle.
One more time-thank you for your prayers
Teena