Of Starfish and Cornerstones

I'm not superstitious, I don't believe that rituals can influence outcomes, talismans seem far-fetched and yet...A few of you have asked about more detail on my starfish fascination.  I've always been enamored with the sea (well, summer and the sea).  But they've taken on another meaning for me, completely by shopping serendipity.  I had been sending Jeremy birthday suggestions via text message and Pinterest boards for a while, and it just happened to be leading up to Jamesey's arrival.  The night Jamesey was born, Jeremy gifted me a beautiful pair of earrings.  Over the first weeks, in that adjustment phase when new parents forget to shower, lose all creativity and original thought beyond survival of their young and themselves, I wore those earrings day in and day out.  Somewhere along the way they became linked to any and all things Jamesey.  I happened to be wearing them the day of our first extended hospital stay.  I wore them to our first appointment at CHOP.  I wore them to the first MRI for James.  I wore them for his CI surgery and for his activation day.  They and starfish became a symbol and a reminder of hope for me in my walk as Jamesey's mama.

Now "Cornerstone" that's different and yet the same.  For many in our neck of south central pa, Cornerstone is a coffee shop featuring yummy white chocolate mochas.  Or in Christian circles it's the song that Hillsong topped charts with in the summer of 2013.  If you've read through earlier posts or we've had deep coffee conversations or trudged together on a treadmill at the gym - you might know this already but ever since that first audiology appointment and crossing a traffic jammed bridge, "Cornerstone" has played over Jamesey.  You might also know that if I am traveling with the kiddos, I rarely turn music on (there's enough going on in the car already - lol).  Specifically, when I travel with Jamesey, I've fought with myself over 'music on or music off" because it doesn't seem fair that he can't hear it. Somehow though, the music always found us and we haven't had a trip to CHOP or a major decision that that song hasn't played over us and reminded us that regardless of the tumult we feel, there is a Cornerstone supporting us through it.  Today at church was no different.

Tomorrow I head to CHOP with Jamesey for his annual hearing and speech check.  And I'm dreading it.  Whatever is ten paces beyond dreading it, that's where I am.  Because I'm frustrated and I'm mad and I'm comparing and I'm hurt.  You see, four years ago we made a prayerful decision to pursue cochlear implants for Jamesey, believing that access to sound could only help him (particularly as there were so many question marks about his learning and his abilities given his Kleefstra diagnosis). Why not give him every opportunity?  I held such hope that he would be one of those magical success stories that you see all over Facebook.  You know the ones I mean, the ones where the baby just lights up at the sound of his mama and daddy's voices.  But, when that didn't happen, it was hard, but it was okay.  Now four years later and peers of his that we've connected with through a local deaf and hard of hearing outreach center are making enormous strides - and it doesn't seem fair.  Some function at completely normal levels and with the support of Speech Therapy will thrive in their mainstream classrooms.  Some have a few more challenges with their health but they are speaking and acquiring a growing vocabulary.  And then there's us with the sweetest rascal who just doesn't want to wear his CI's.  Who communicates in so many ways without words or sign or picture exchange or Ipad....but who I dearly want to give access to words.  You see, this wordy mama is so challenged.  I love words.  Speech.  Listening.  Communication.  I love the ways that words build and create and engage and describe.  Words enrich our lives.  But deeper than that communication is a defining element in my life and the fact that one of the people I hold dearest cannot always communicate with me in a way that I understand breaks my heart.  My daily prayer is that something changes and Jamesey decides that the hearing life and what it offers (or for that matter the signing life) - just that something would click and we would see this gift of a little boy just begin to connect more and more so that he can let us into his world a little more.  But for tomorrow, it's a repeated prayer and a reminder to put the EZ Pass and the bag with all of his CI gear by the door so I don't forget it.  It's a feeling of yuck as I anticipate the feedback from speech and the fight to reprogram his CI's or to check them in the soundbooth.  For now, it's the thoughts that I need to banish that say he's not acquiring knowledge or skills because that is false.  After all, he figured out how to climb onto the dining room table and how to climb out of his crib, so that has to count for something.  It just stinks to acknowledge the facts - that his development is delayed, that he doesn't communicate with words or signs, that he doesn't wear his CI's without great challenge.
So tomorrow, I'll focus on the great things about him.  He has the sweetest heart and the greatest smile.  I'm thankful he's a good eater and a pretty good sleeper.  He loves to snuggle.  He's walking without assistance and we didn't think that would happen.  He's charting his own course.  Writing his own story and who am I to impede the plot of the life that he and his Creator are authoring.  Tomorrow, I'll see if Cornerstone plays.  Tomorrow, I'll wear my starfish earrings.  And tomorrow, we'll keep working, hoping, praying and believing!