Learning to Fly

I started writing this post several months ago.. and just quit. It's been sitting here in my drafts folder since May. I didn't finish it because when I got pretty far along I stopped and read it and thought, "Wow. You're pretty whiny there Mindy." I couldn't delete it though, because I felt like the way I was feeling was pretty valid. I just couldn't complete my thoughts. At the time, I couldn't find the good in all of this... and then some amazing things have happened since May and now I can.

So if you forgive the whiny introduction, this is a pretty good summary of what we've been up to.

Tom Petty and Jeff Lynne wrote a song titled "Learning to Fly" and I've always loved it. Tom is not an overly attractive man, but I love his music. The lyrics have always reached me, and I could nod my head and say, "I get it". 

Yesterday I was sitting on the couch, holding Calvin and crying when this song came into my head. It was almost a perfect description of how I am feeling lately.

A few weeks ago we did a CT scan of Calvin's head and the results weren't surprising, but not what we wanted to hear either. We discovered the reason for his hearing loss, his Vestibular aqueduct is enlarged. It's a tiny canal that leads from the back of the cochlea to the brain. If it is too big, excess fluid and pressure will destroy the cochlea's ability to function. During this scan, some question was raised about his auditory nerves, so an MRI was performed to clarify the condition of them.

I have known since the CT scan that things were going to get worse. The conversations that I've had with his audiologist were all very----guarded and cautiously optimistic. Above that though, I just had a feeling. Mom's can tell I guess.

Yesterday we got a call from his surgeon's office. The nurse was not up beat and happy, but chose her words carefully. She spoke slowly and deliberately so I had plenty of time to absorb all that she was saying.

Apparently, Calvin's cochlea's are more deformed than we previously thought. His canals are underdeveloped and very small. She said that together with an enlarged vestibular aqueduct, this isn't usually a problem as far as getting an implant. (That was the whole purpose of these tests by the way, to determine how eligible he would be for an implant. ) Then she said "However". 

I wanted to hang up the phone. I didn't want to deal with any more bad news. It was just enough already. But since I was already on the line and had waited long enough for the results, I let her finish.

"However, we were concerned about the condition of Calvin's auditory nerves, and the scans showed that his nerve in his left ear is not present, and is deformed in his right."

The significance of this is that without a functioning auditory nerve, Calvin cannot have an implant, and therefore, never hear.

Boom. All the hope that I had that he would someday hear my voice expolded into a million tiny pieces on the highway as I drove home.

I think more than anything, I just felt very exposed. I am ashamed to admit, that I was hoping that Calvin could have an implant to spare me the risk of failing. Learning sign language is fun, but daunting. In the back of my mind I've been thinking, I'll learn what I need to so that we can get through this year, and then he'll get his implants and everything will be ok. He will never know how pathetic my attempt was.

As I was sitting on the couch, that song came into my head. "Learning to Fly, but I ain't got wings. Coming down, is the hardest thing."

How many of us have been asked or expected to do something that seems so unattainable?  Like flying without wings. "Coming down, is the hardest thing." Once you've started, how do you stop, turn around or change directions? You don't.

 "Them good old days, may not return". I can't ever go back to the sweet few days I had with Calvin before I knew anything was wrong. PLEASE don't misunderstand me here. I am in NO WAY disappointed with my son. I get really tired of people telling me, "You have to remember that he's perfect". I am sure it's their way of supporting and encouraging me. However,  How could I look at someone so beautiful and feel my heart nearly burst with pride and joy and still be disappointed in him or the way he was born? Never. But, I will never be able to go back to the time when I didn't know he had a disability. Same for my sons Aaron and Zack. I will never be able to go back to when I didn't know about Aaron's aspegers or Zack's learning disorder either.


 My friend Holly made an astute observation once when I had complained about the unfairness of his struggle. She pointed out, "Yeah, but he's not struggling with it. You are". Maybe there isn't some higher lesson that I need to take from this, but what if there is? Maybe it's selfish of me to think that there is, but I am hardwired to believe that the trials we face in this life are for a reason.

I have never been more afraid of failing than I am now......

So that is where I left things in May. Fast forward a little bit, and this is what has happened since then.

On July 28th, Me, Rob, Aaron, Zack, Carli and Calvin all went to Idaho Falls to run in the MAD marathon for the Olive Osmond Perpetual Hearing Foundation. This was a pretty important day for us, for a lot of reasons. All of the proceeds from the race went to support the Idaho School for the Deaf and Blind, and I would be nothing but an ungrateful turd if I didn't recognize the help and support that they have given to my family. Our regional consultant Mikkel, has been there for us and taught us so much about deaf culture, sign language and the developmental mile stones that Calvin should be hitting. Without their support, I would definitely be flying without wings.

This race was such an amazing experience in so many ways. So many people came together to love, support and cheer me and my little family on. My sister Stacy was so proactive in helping me to make an event of it. The morning of the race, I was so nervous. Although I used to run regularly, I have not for several years now. I'm out of shape, and was terrified of not being able to do well. Calvin deserves parents that try though, so I was willing to do it no matter how painful or embarrassing it was.

When I pulled up to the starting line though, I burst into tears. My friend Alan Johns had helped me design some T-shirts for all of us to wear during the race, and this is what I saw:

We made an awesome group! 

Me, My sister and my niece running in with Calvin

Rob and I just before the finish line 

I was so overwhelmed by how many people were there for Calvin, and those were the first happy tears I've cried in a very long time. As we started the race, I couldn't stop crying. For as far ahead as I could see, there was a line of runners in bright blue, all with Calvin's name on their back. My friend Sharilyn who first got me into running ran almost the entire way with me, then as I neared the finish line, my sister ran back for me and ran me up to my wonderful husband. He grabbed the other side of the stroller and together, we ran our baby in with everyone cheering for us.

After we were done running, we had all gathered together and our educator from the school for the deaf and blind came and said that Merril and Justin Osmond from the Osmond family were there, and had seen all of our shirts while running and wanted to meet us. I was flattered. They were genuine, kind and concerned. They asked about Calvin's prognosis and offered to help in any way that they could. It was such a surreal moment. I even behaved myself and refrained from asking stupid questions like, "Can I meet Donny? and "Are all of Marie's parts real?".. (Although I really wanted to).

All in all it was a beautiful day. I think the beautiful part is that 5 or 10 years ago I am not sure that this would have been possible. My family has pulled together and we are now so much closer than ever before. I can honestly say that they are my friends now, and I am amazed at our ability to love and share and grow. (I will be posting more pictures from the race later. It was simply too amazing to not share more about it.)

As I look back on this day, I realize where my wings are. They are my family, my friends, my husband and my kids. I can't do this alone, and the best part is that I've never been asked to. I've never been asked to silently sulk or cry myself to sleep. I've never been asked to carry a heavy heart. Nor have I been asked to fly. That's Calvin's job, not mine. It's my job to help him, prepare him, teach him, and then get out of his way and watch him go.

He's 6 months old now, and I can't believe how much has happened and changed in his short little life. He can already sign four signs : "Mom", "Dad", "Milk", "Toys". His laugh is infectious and his hugs and kisses are healing. His life is healing, and I am so blessed that he chose to share it with me.