When my parents decided to build our family home, they wanted to provide a better life for us. Moving out of Philadelphia to a better school district was their number one priority; accessibility wasn’t even on the radar. After all, why should it have been? They were in their late 30s, both healthy individuals with a young active family. How would they have known that six years after moving my mom would break her leg? Who would’ve guessed that fall, and the many subsequent ones that followed, would eventually lead to diagnosis of Multiple Sclerosis?
First of all I just want to say that I am very thankful for ears. And, I suppose just like other important body parts, I had just taken normal hearing and ear structure for granted.
When Gia was born, her left ear was deformed. I figured that if it looked malformed on the outside, that something might be wrong on the inside. I pestered the NICU staff about when the hearing screening would take place and I was not surprised when she failed. They told me that it was not uncommon to fail the screening because it was a generalized test and the NICU was a noisy place. But when she had her first sedated hearing test with the audiologist, her hearing impairment was confirmed. Since then she’s had several more sedated hearing tests, wears bilateral hearing aids and we see the audiologists monthly.
It’s a little disappointing to see my almost 2.5 year old only take a handful of steps these last months.
I feel very lucky that they returned, like I was given a second chance. In countless ways I feel this way about life too.
Our family life is much like anyone’s with young children. We laugh, we play, we eat together when we can, we sometimes go places that aren’t medical or therapy related and we struggle with sleep. Sure, we are pretty busy with appointments and there are plenty of times of stress and worry too. Compared to our life before a child with special needs, those ups and downs do tend to be more dramatic, but that’s to be expected….we are on a different ride now.
I’ve always given quite a bit of thought to Gia’s future. Over the last two and a half years I’ve wondered whether she would survive, eat, walk, talk or live independently. I’ve questioned whether she would recognize her parents, laugh with her sister, make jokes or express emotion. I’ve managed to put some of these thoughts to rest, simply because they are no longer a mystery, and I’ve also learned that excessive worrying about future events does no good. Alas, sometimes I am undeterred by that that obvious fact.
After each of my girls was born, I was given plenty of advice. Some of the advice was really helpful. Some of it, although well intentioned, was not so useful for our particular situation. This was more so the case when Gia was born especially since I was sorting through so many of my own confusing emotions at the time.
I’ve been bracing myself for this since Gia was born. The n-word brings tears to this mom’s eyes, sadness to my heart, and a kick to my stomach. However, it’s actually a word I hope that Gia may one day sing from mountain-tops.
My n-word is non-verbal.
When I first heard the news that Steve Jobs had died, my first reaction was one of sadness you might feel with a complete stranger’s passing. However, the next morning it hit me like a ton of bricks. I found myself crushed by the weight and just heartbroken, even moved to tears, simply listening to news coverage on National Public Radio. This isn’t typical me, and so after some reflection of the profound impact his contributions have been to my life, I realized his inventions and attitude has given me so much more than just gadgets and better computers. He has given hope and inspiration to not only me personally, but also to a community I care deeply about.
Before kids, I spent much of my life labeling things. As a biologist I was trained in the science of naming (taxonomy) and spent countless hours looking through a microscope at all kinds of invertebrates. Each animal was labeled with a name and classified into groups. When something is labeled, we know how it relates to the rest of the world, we know how it will behave, we know what to expect. At least we think we do.
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