Noah Ben Shea or the Bear that made me cry

As my good friends and family know, Jimmie is non-verbal.  It is our main concern at the moment.  Seizures are currently controlled.  He's sleeping through the night for the first time in his life; thanks to periactin.  And his behavior problem is resolved with prevacid.  Yes the boy WAS in pain, just like we said he was.  But still he does not talk or sign.  It took us 2 months to figure out why he was screaming and banging his head.  But even so, there are still moments...

This blog post is about one of those moments.

Last year, I took the boys to Virginia, on my own, to attend David's nephew's wedding and to visit my family.  My sister and I took Jimmie and Charlie shopping with us in Tappahannock at Peeble's.  She was pushing Jimmie in a cart.  I was pushing Charlie.  In the gift department, Jimmie reached out and grabbed a Teddy Bear off the shelf.  It was ironically a "get well" bear.  You squeeze the paw, and the bear starts to talk, in this very mellifluous tone, the actual voice of poet and author Noah Ben Shea, reading one of his poems, written specifically for the bear.  It's a lovely little poem.  At the end, he says, "Peace and blessings, Noah."  The mouth moves, synchronized with the words.  It's really the best done of such things I have ever seen.  But I guess I am partial.  See Jimmie squeezed the paw there in the store.  And he smiled and laughed at the bear the entire time the bear was talking.  And then the bear finished, "Peace and blessings, Noah."  And Jimmie, my non-verbal child, said, plain, loud, as if he spoke it all the time, as if it were a word he heard daily, "Noah."  I stood there in the store and cried.  I hugged him tightly.  And I am not ashamed to say, I hugged the bear too.  And yes, I bought the thing.  Did you think I would walk away from it?  He has never said it again, but he does often press the paw and listen to it.  And I checked.  There are no kids in his class named Noah.  No, this little miracle was brought to us via Noah Ben Shea and his lovely little bear.  God is so very good! 

It doesn't really end there though.  I was so very moved by this experience that I visited Noah's website and sent a message to the company about our miracle.  Within an hour Noah's daughter had responded, saying she would send my message on to Noah himself.  And as promised, she did, because within a day, Noah had emailed me as well.  Both he and his daughter had promised to keep Jimmie in their prayers.  A very nice thing to say.  Ah, but a promise that appears to have been kept.  See, I friended Noah Ben Shea on facebook after the email, and today I realized that Noah Ben Shea is a member of our group page "Pray for Jimmie."  And not only a member, but he apparently pays attention.  He commented on 5/11 about Jimmie's six month anniversary of being seizure free.  I saw that and thought back to that day in Peeble's. 

The miracle is more than the word, "Noah."  There is a miracle in Jimmie's story reaching a man and his family whom we have never met, to whom we have absolutely no connection.  A miracle of Jimmie touching their hearts and minds, if only in a very small way.  There is the miracle of prayer.  It's nice to know that people care...enough to respond to an email and read a post.  And there is the miracle for me of the realization that there are people who actually do say prayers for you when they say they do.  It's a nice feeling.

Celebrating Miracles With Bated Breath

We are 10 days shy of 6 months seizure free!  This is the longest period that Jimmie has ever experienced a reprieve from the seizures that have changed the course of all our lives.  They started when he was 4 1/2 months old.  We've beat that.  At that time we started him on topamax and b6.  He went seizure free for a week.  Beat that.  We tried ACTH, keppra, depakote...nothing worked.  Then we tried zonegran.  Well we started with the generic.  With no success.  In December 2008, his epileptologist switched his prescription to "as written."  At first his seizures increased.  But to be fair, he did have a cold and an upper respiratory infection at the same time.  Then on January 6, 2009 he stopped seizing.  One week before the birth of his baby brother.  That reprieve lasted 4 months.  Beat that.  So here I sit, with bated breath, loving Banzel, Zonegran, and Keppra with all my being.  6 months is just a few short days away.  A little over 1 week.  Let's not miss any doses! Shall we? 

Oh, but it is the worst part of my day, administering those meds.  They taste awful.  And he fights it so hard.  I hate giving it only slightly less than he hates taking it.  Contrary to his belief, I do not enjoy holding him down and forcing foul tasting concoctions into his mouth and making him swallow.  In fact it breaks my heart daily.  But I do it.  Because it is what is best for him.  Because it is working.  And that makes it worth the heartbreak.

So right now, I feel like dancing.  I feel like yelling, "Yee Haw!" loud and long and to the sky! 

Not only do we have seizure freedom for our beautiful boy, but he has made leaps and bounds with development.  He has better eye contact.  He has a better sense of humor and laughs more appropriately.  He has even played appropriately (on rare occasion) with toys, once even sitting on the ride on firetruck and pushing it with his feet, just like you're supposed to.  He has sat on his daddy's lap and slapped his daddy on the chest happily cooing, "DaDaDaDaDaDa."  He hugs readily.  And low and behold, the boy has looked when his name is called and come when asked to come!