Life After Infantile Spasms
Well, the title of this post is slightly misleading but only because John Michael was prescribed and is taking a long term seizure medication to control his “spasms”. The great news is that he responded incredibly well and we are now enjoying his revitalized personality.
He laughs and cries, plays with his toys and is even trying to mobilize himself; all things that had been lost in the over activity of his brain when he had these “spasms”. We’ve been thanking God everyday for these simple things because, honestly, when you’re going through all the steps the doctors prescribe; your mind continually reminds you that all your efforts might be for nothing.
That was my deep dark fear, you know the type of fear I’m talking about? The kind that, when the thought even enters your mind you shake your head as if to shoo it away; those thoughts you never give voice to because you might call them into existence…. Yes, those thoughts. My head would take me on some wild journeys into the worst case scenarios and it wasn’t a pleasant trip by any means.
But, here we are today and my little boy is happy again; my fears and negative thoughts have been exposed for what they are….. frauds; nothing more than an attempt to dissolve my faith in God and His plan for John-Michael.
Although a video can capture an event, it falls short of experiencing John-Michael, now that he’s back from the infantile spasm abyss. But it is the best I can offer you to get a glimpse into what life is like after infantile spasms.
All I can tell you is that today is a great day! John-Michael has overcome a major hurdle in his journey with Down Syndrome. There is nothing I look forward to more, than to see my little champ smile at the end of my day. I suppose it impacts me so deeply, because I irrationally thought for a short time that I would never see it again. But then again can you really appreciate the good without first experiencing the bad? That’s similar to which came first the chicken or the egg question.
I think it’s the smile itself that has power over the world around us, because when my children smile at me, no matter my mood, it warms my heart and I’m forced to smile back no matter how hard I resist.
Maybe that’s the lesson.
Think about it, what would happen if the world smiled more? And not one of those deviant, I’m going to create mischief smiles, but a genuine I’m happy and I want you to be happy too, smile. One could only conclude that the world would be forced to change for the better.
Proverbs 15:13 A glad heart makes a cheerful face,
However if you start with a cheerful face it will get down into your heart and you’ll be a happier person. The more you smile the happier you’ll be and that has rewards of its own.
Proverbs 17:22 A joyful heart is good medicine,
A smile is as good as any medicine so, today, in honor of the return of John-Michael’s smile would you smile at someone for him? I’ll bet it’ll make you feel better too!
We’ve decided to add helping people smile as part of our mission on John-Michael’s Journey! We’re thinking about adding this statement to our motto!
“A smile is all it takes to make the world a better place!”
What do you think? Please leave us a comment below!
On a separate note, we want our readers to be the first to know about a project we are working on to help in Down syndrome awareness. I can’t give all the details yet, but we are writing a book that tells the story of the emotional struggle of parents when they find out their unborn son or daughter will be born with Down syndrome and the reality when they meet their child on their birthday. Please keep this project in your prayers that they right words and message be put on paper and that its impact will be great! Thank you in advance.
Also, if you’re struggling with anything, a diagnosis or maybe you’re at the beginning of dealing with infantile spasms; whatever it is please email us at firstname.lastname@example.org with the subject “Prayer Request” and we’d be honored to put you in our prayer book and our faith with yours.