Friday, June 13, 2014


1st day of school (August 2013)

Today was the last day of Kindergarten. I've been dreading it for weeks. People keep asking me if I'm ready for the school year to be over. I always say that I want mine to desperately end and for Lucas's to last forever. He has had a WONDERFUL year, thanks in large part to his amazing teacher, Mrs. Burns. She always believed in him and always advocated for him. She also pushed him academically, and kept pushing. He's reading on a 2nd grade level. This mama couldn't be happier about that.

Kindergarten marks the end of his innocence to me. He's starting to ask me big questions. How does a baby get out of your belly? Is Santa Clause real? How does someone become deaf?

When he asks me questions about being deaf, I feel the amazing opportunity to help him see it in a positive light - to acknowledge his feelings about it (sad, frustrated, etc.), but to affirm the magic and the miracle of the cochlear implant. Tuesday night we talked about getting to meet Graeme Clark someday soon, maybe even next February at the Cochlear Celebration. I want to meet him so badly to thank him, to shake his hands, and probably to cry uncontrollably in his arms.

But, Lucas is still my little boy who wants me to cuddle with him every night, so I'm still cherishing those moments. Wednesday morning he asked me if I would come and visit him when he's in college. I agreed if he goes to Penn State and lets me spend the night in his dorm room. It was a deal.

I could spend hours telling you about the great things that Mrs. Burns did with her Kindergarten class this year, but one thing comes to mind immediately. She took popular radio songs and taught them to the kids, and let them listen and dance to them. The one song was Happy by Pharrell Williams. They would form a big circle and each student got to dance in the middle. This is how they started their day on a happy note. The other was Roar by Katy Perry. With Roar, they talked about perseverance, and wrote poetry. Check out Lucas's poem:

Lucas has spent the last 4 months obsessed with this song. We're constantly watching it on YouTube, trying to find it on Pandora, and just singing it freestyle. Nora likes to sing it too. To me, it's so much more than a catchy song. It's an anthem for his year. It's an announcement of his capability instead of his disability. It's him shouting from the rooftops that he's a force to be reckoned with. I love it. Here he is - I think his smile and enthusiasm say it all.

I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything

You held me down, but I got up (HEY!)
Already brushing off the dust
You hear my voice you hear that sound
Like thunder gonna shake the ground
You held me down, but I got up (HEY!)
Get ready 'cause I've had enough
I see it all, I see it now

I got the eye of the tiger, a fighter, dancing through the fire
'Cause I am a champion and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion and you're gonna hear me roar
oh oh oh oh oh oh
oh oh oh oh oh oh
You're gonna hear me roar
© Katy Perry

You did it, buddy. I hope that your love for school, learning and life continues. You make us very proud. You are a champion, and we hope to continue to hear you roar.

last day of school (June 2014)

Thursday, January 9, 2014

5 in 5 years

Today we celebrate 5 years of hearing for Lucas. FIVE YEARS. Here are five things I've learned in five years of life with Lucas and his cochlear implants.

1. The cochlear implant is now only a part of who he is and of who I am. He is more importantly a boy in Kindergarten who loves life, practices Taekwondo, loves to play Wii and is super loyal to his friends. I am no longer the mom with the deaf son. I am the working mom of two children, one of whom is deaf. Five years has provided me with distance and perspective. Early on I was completely consumed with hearing loss and cochlear implants. I don't regret it for a moment; it was part of the grieving/acceptance process and also what has gotten us to where we are. I devoted an incredible amount of time figuring out how to ensure Lucas had the very best outcome. We are there.

2. Advocacy continues to be a top priority and is never ceasing. Right now (unfortunately) we are battling for his deaf education services to be carried out appropriately. It is because I am constantly advocating for him that I even know what's occurring and what's not occurring. I'm not entrusting the school to take charge of his education. I am taking charge of his education. Knowledge is power.

3. Lucas's future is clearer, but new challenges continue to emerge. I believe that the first two years of Lucas's life were the toughest because of the unknown. When he was first diagnosed we had no idea if he would ever hear. When he was first implanted we had no idea if it would ever work. It was at about two years of age, when Lucas had caught up with his hearing peers and began to develop language exponentially, that I knew everything would be alright. Like I posted when Lucas started Kindergarten a few months ago, our first long term goal has been met - Lucas attends Kindergarten at our neighborhood school in a mainstream setting. New challenges seem simple in comparison to the beginning, but present their own difficulties. Responding to statements like "I wish I didn't have these CIs" is not easy for this mommy.

4. Support is so important, both forwards and backwards. I was SO alone in the beginning. I couldn't read much about kids with hearing loss before Lucas was six months old, and I never met anyone with a cochlear implant before he received his first. I did have wonderful support from fellow blogger mommies. We still keep in touch on Facebook, even if we don't all blog that much anymore. I vowed to change that for other families, so I started a support group. I have had the fortune of mentoring new families and also learning from other families that are further along in their journey. Support is so key to well-being.

5. I continue to feel incredible amounts of gratitude and I want Lucas to grow up feeling the same way. I feel like Lucas was born into the right family, in the right country, in the right decade. Not a day goes by that I don't stop and think about how fortunate we are, how lucky he is. When he starts to lament his hearing loss and need for CIs (which I believe he is entitled to... and it truly doesn't happen often), I first acknowledge his pain and frustration, and then I try to help him see the positive. We try to show our gratitude in other tangible ways too, like through fundraisers for Schreiber (where Lucas continues to get speech & physical therapy) and CHOP. I don't ever want this miracle become mundane or to start taking it for granted.

Happy 5th hearing birthday, Lucas. We are incredibly proud of you.