I asked Jon to give me some points he wanted to highlight about himself and he said, “All people need to know is that I’m incredibly good-looking.  Get that point across.” HAHAHA!  Which he is, but he is definitely more than that.  So, I am obligated to give my perspective of the glue that holds this family together.

As in the last three posts, the word I would use to describe Jon would be selfless.  While he has amazing qualities overall to me that stands out the most.  When we discovered Heath was Deaf, he made the decision that staying home to raise Heath and Presley would be the best for the family overall.  Despite his desire to contribute financially to the family funds he sacrificed, his own wants and needs and put Heath’s first.  It was at that moment I realized who I chose to live out my days with.  People say that a person’s true character is revealed when (excuse my French) the shit hits the fan.  I remember clearly that he said, “I will do whatever it takes to make sure he has a safe environment to grow in”.  Leaving him with someone all day, every day, with someone who could not sign was not an option for either of us.  Since my work was more stable, he sacrificed himself and allowed me to pursue my career.  In my opinion something that is rare in the men that are in my life both professionally and personally.

My belief is that Heath is thriving and growing not only from the support of his Deaf family, but also his growth is directly related to the fact that his father can communicate with him.  Studies have shown that less than 10% of hearing fathers can sign fluently with their Deaf children.  Jon refused to be a part of that statistic.  While it is still difficult for both of us to sign fluently as the English rolls off our tongues, we still have a meaningful relationship with Heath and that was very important to him.

Not only is he selfless, but he is incredibly witty, fun and engaging.  He loves music, motorcycles and actively pursues any free time to veg since he’s with the kids A LOT!  He’s a man of few words but when he does speak, it’s quite thought out and respectful.  He’s the exact opposite of me, which is great!  I can truly say that the three of us are truly blessed to have him as our husband and father.

And that is my perspective.

Describing Presley in one word is quite difficult. But, if we had to, it would be a communicator. At 12 months of age Presley had a clear vocabulary of over 50 words. It was quite amazing. At first her doctor laughed at us during that 1 year check up when we told him she could say that many words. However, when he heard it for himself, he was amazed.

She’s a person with an opinion and a vocabulary to back it up. She starts talking the moment she wakes up to the moment she goes to sleep.  ASL is challenging for Presley since English is her first language and so she struggles expressing herself with her hands she prefers to use her voice. But, she knows that if she wants to communicate with her brother she must sign. It’s a daily challenge for her, but we think as she and Heath grow together he will guide her along the way.  She’s a loving child, very considerate and thoughtful.  She had a great first year in kindergarten and loves school. Let’s hope this continues. Ha!

Whether Presley realizes it or not, she has had a major hand in Heaths journey. Her command of the English language and understanding of it early in her years helped us realize that language is key for brain development. We knew what the brain was capable of because we already had an older child who was advanced. But, there was a sinking feeling in the back of our minds that it wasn’t just going to be the same for Heath. Her development assisted us in making the choice that ASL was going to be the easiest way we could get the language into Heaths mind.  Our audiologist and our ENT surgeon urged us to use spoken and oral methods. Encouraging us that ASL could hinder his speech development.  We kept asking how do we know he’s hearing the words. We didn’t have the answers, they didn’t have the answers and we weren’t willing to take a chance. What happens after three years and he still not speaking or hearing or communicating.  We didn’t want to waste any time guessing. HE was more important than fixing the “problem”.

The easiest thing for all three of us would be for Heath to use hearing aids or a cochlear implant to communicate with us. But those options just didn’t feel right. We don’t judge other families for choosing them. It just wasn’t right for us.   And there was that continued question what if they don’t work!

So thank you Presley for being so smart! You’re just as important on this journey as everyone else and we love you.

And that is my perspective.

What I thought would be cool is everyday for the next 4 days. Introduce each one of us to the audience.  I think getting to know us more might help you understand our choices and this journey.  Today I thought I would start with the whole reason why we are here. Heath.

He was identified as a Connexin 26 gene carrier. What does that mean?  Connexin 26 (Cx26) is a protein found on the (GJB2) gene and is the most common cause of congenital sensorineural hearing loss. Connexin 26 mutations are responsible for at least 20% of all genetic hearing loss and 10% of all childhood hearing loss.

In other words he got it from us!  It’s an interesting fact but that’s all it is, just a fact. As parents you want answers and so we got our answer as to why he’s Deaf. Many other parents don’t have that “luxury”.  However, it helped us just move on to the more important things, communication. But anyway, back to Heath.

If we were to describe Heath in one word it would be determined.  He knows what he wants, when he wants it and how he’s going to get it. Many would say that is how all 3 year olds are.   But to us, there is something special about him.  We haven’t quite put our finger on it but there is definitely something there.

He loves puzzles, cars and trains.  He describes them in detail and has quite an imagination on how cars and trains all crash and burn at some point. ha!  It’s amazing to see what the brain will do when given unrestricted access to language.

He’s quite social and is interested in knowing everyone’s name. He mentioned to us at one time when I told him I didn’t know the Starbucks baristas name, everyone MUST have a name. I laughed and asked her and then Finger spelled it to him. We wholeheartedly agree a name and an identity is important!

We’ve taught him the difference between being Deaf and hearing. After signing that he’s Deaf he does the sign for proud. And we encourage it. The confidence we build in him now will prepare him for the challenges he will face in the future. We think he gets it but time will tell.

His BFF is quite the determined toddler himself and seeing the two of them communicate is always entertaining. What’s amazing is that their friendship is meaningful because they have a real language to communicate in.

Heath is a full time enrolled student in the pre-school program at California School for the Deaf in Fremont and is thriving. He’s got friends, a language and a support system to build a foundation on for years to come.  He is truly a fortunate Deaf child!

And that is my perspective.

There’s a lot to share on this journey called life. But when life throws you a curve ball and says… Nope your life as you know it will change forever, you can embrace it or you can deny it. Our small little family of three decided to embrace the gift of our fourth member with open arms.  We are a family who has embraced ASL (american sign language) and all  it brings. It’s culture and identity being at the forefront.  I think we are ready to share our journey with the world.  It’s  time for our  Facebook page to move into a space of knowledge for the masses. Will you join us? I hope you do!

And that is my perspective.