Trying Not To Cross Bridges That May Not Be On Our Path...
Posted Nov 18 2008 12:20am
As a new parent, you fret over every little sniffle, sneeze, scratch, and sigh. You check to make sure they are breathing, even when you can hear their little baby snores. You try every developmental toy out there to make sure your kid is on track. You only buy organic, you use bottles that are more expensive than some of the wine you drink. You do everything you can to protect your kid. And sometimes, even everything isn't enough.
I think by now, most of our close family and friends know about the journey that we've been on in regards to Christian's hearing. At birth, Christian failed his newborn hearing screens. He's been tested by the top audiologists and ENTs in the mid-Atlantic, all with conflicting results. We've been told "Don't worry, he can hear" two days after we were told "This test indicates a possibility of a hearing loss". We've had to sedate our boy so neurological tests could be done, only to be told that they need to be repeated. Recently, we had a behavioral test done...which he passed. We have at least 2 doctors appointments every week... It's so confusing. We just don't have the answers that we desperately need.
The hardest part of all of this, is trying to deal with the unknown. Not an hour goes by in my life where I don't ask "Can he hear me? Did he hear that?". I've spent countless hours researching the various technologies that can help him. Cochlear Implants, FM transmitters, hearing aids...I have them all bookmarked on my computer. I've watched hundreds of videos on YouTube of kids with cochlear implants. I've written letters to doctors at the Kresge Center at LSU (and the doctors have responded...a big surprise). We don't even know if he NEEDS any of this, and that is the hardest part. Not knowing.
We've been lucky enough to meet a wonderful audiologist through the Montgomery County Early Intervention Program. She's been there for us, explaining what all these tests mean, getting us appointments with ENTs that usually have a 3 month wait list, and being a shoulder to cry on. She's given me her personal cell number, something that I've used often. She calls to check in on us, working as a case manager. She understands what we are going through as a family, and for me, as a Mom. She's a Mommy too...she gets the pit in the stomach, the random bouts of crying that happen daily, and the feeling of failure that you inevitably have. She gets the grief. She's been through it all with her child, who hopefully will have her hearing restored with tubes. She's been a fantastic resource and reminded me of something yesterday, when we spoke about Christian's behavioral test, which he passed.
"Don't try to cross a bridge that may not even be on your path".
She reminded me that we really don't know what Christian's status is. What we do know is that although he had an abnormal neurological test, the normal behavioral test IS a positive sign. She reminded me of what our ENT told us last week, that "There is no way Christian is completely deaf". She told me that as parents, we're doing all we can for Christian. And that we are doing everything right, getting all the tests, and waiting out the lag-time between them all.
Despite these possible hearing set-backs, Christian is doing phenomenal. My little guy is just days away from crawling. He has 2.5 teeth (the top one is coming!), and he is vocal. He is SO strong, and probably the happiest baby you'd ever meet. He loves animals, trucks, and football (of course he does!)
The support that our family has gotten from our parents, grandparents, siblings, and friends is amazing. It's times like these when you realize that it really does take a village to raise a child. Our parents have ridden this rollercoaster right along with us. My best girlfriends have gotten phone calls at 10:45 at night with me sobbing, and they've been there to listen. They've surprised us with offers to babysit so Chuck and I could have some time to ourselves, something that is SO needed since our lives are consumed by worry. We know that there are so many people who are absolutely in love with our son, and will do anything and everything to help him and our family. And we are so blessed.
I'll continue to post updates, now that I have my emotions somewhat under control. We have alot of waiting around to do these next couple of weeks. With several more appointments and evaluations, we hope to try to piece together this puzzle.
Please continue to pray for our sweet little boy and for our family.