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. 


Anonymous said...

I'm a Spanish audioprothesist and I follow you since 2009. I use the story of Lucas in conference and to illustrate other stories of hearing. Now from France I tell you "Happy Hearing Anniversary" and I still following you. Thanks for sharing this beautiful and courageous Story of life.

dlefler said...

I love it! Five years.. honestly, time flies by way too quickly. Happy Hearing Birthday, Lucas! You are a rockstar!