Thursday, June 20, 2013

Living Life on the Edge of the Cliff - Super Joe's Next Surgery

Last night I had the pleasure of hearing a wonderful tribute by a friend of mine about a friend of ours who had passed away. The speaker is a Stage 3 breast cancer survivor and our friend who passed away had a degenerative muscle disease. The speaker talked to the audience about living life right out there on the edge of the cliff. Living life so fully and with such appreciation because life has put you out there on the edge and you can choose to appreciate every single second and leave nothing left behind or you can cling to that cliff and concentrate on all you might lose if you end up going over the edge.

Our family felt like it was pushed out to that ledge when we learned about Joey's diagnosis while I was pregnant with him. We felt like the air had been sucked out of our lives. We felt like life as we knew it was over. And to be honest, life as we knew was over. Thank, God.

Life as I knew it before was great. Life before was lovely. We had Tommy, who was, knock on wood, pretty healthy. We had our little family. Our routines. Our little life. Life was good.

The experience of being pregnant with Joey and having Joey is what pushed our lives to living on the edge of that cliff. His very existence was like a focus lens on a camera. Suddenly the world became sharper and clearer. Suddenly it was easy to see what was worth wasting time and energy on and what wasn't. 

Life on this edge is incredible. Having Joey as a son has helped me to try and be a better parent, a better wife and a better person. Mind you-- there is plenty of room for improvement and this is an ongoing effort at being "better"-- but it is an effort that evolved from being Joey's mom. Having Joey has helped me to slow down the urgency with which I used to rush through life. Having Joey has helped me to appreciate the little things as well as the big things.

A couple of weeks ago my parents kindly treated our family to an entire week at the beach. Joey had been in the hospital with pneumonia a few weeks before the trip and then the night before the trip he was sick again, but this time with Croup and an upper respiratory infection. We were determined that sickness was not going to keep Joey or any of us from a week away from it all and we took him in to see the doctor on our way as we headed down South on 77. With a handful of prescriptions we took off.

Super Joe was sick the entire week and, yet, by the time we were packing the car back up for the long drive home I turned and looked at my husband and said, "This was the best week of my life." 

And it was. It was incredible. We played. We slept. We swam. We grilled out. We were lazy. We didn't go to a single appointment. We didn't visit a single doctor. We didn't fill out a single form. We didn't spend a spare second on the phone with the insurance company. We didn't return calls. We didn't check email. We lived life right on the edge of that cliff and enjoyed every single second with complete abandon.

Friday is Joey's eye surgery that was supposed to take place a month ago, but got put on hold when he had pneumonia. We met with his doctor on Monday and we have our surgical plan for Friday. His doctor is moving to Dubai and Friday is his last day of surgery in the States for a couple of years.

He told us that his entire practice is pretty much wrapped up and in a good place except for Joey and he wants to make sure Joey is in a good place before he leaves. We appreciate this.

This time around I am having Tom go back to the operating room and put the gas mask on Joey. It's one of the worst parts of these surgeries. They want the parent to go back and put the sleepy gas mask on the child so your child is comfortable. I hope it has made Joey comfortable because walking back to that cold OR and trying to hold your child down while he squirms under the pressure of your hand holding a gas mask to his face is a bit much to handle for a third time.

Originally, Tommy wanted to go to his brother's surgery and we entertained the idea, but it would just be too hard on all of us. We usually have to be there by 6am and Joey isn't allowed to eat or drink, so we try not to do that in front of him. Then there is the time between when he is out of surgery, but hasn't woken up. Let's just say he doesn't exactly get up on the right side of the hospital bed. He wakes up angry. Really angry. Pissed, in fact. Pissed that he hasn't eaten, pissed his eyes hurt, pissed his throat hurts from being intubated.  We decided we could have Tommy come another time when everyone involved is older and more able to deal with the drama. 

The surgeon's plan is that after Joey is under general anesthesia, the surgeon is going to test Joey's right eye for Brown syndrome. If he does have Brown syndrome (a tightening of a tendon that does not allow the eye to fully move), then the surgeon will pull back the tight tendon and implant a small silicone "spacer" and then he will pull the tendon back down.

If this is what happens it will be a little more involved than his other eye surgeries and the risks are greater for infection or extrusion (in which the implant pops out). My concern is if this will make Joey uncomfortable and what can we do to make him feel better.

If it is not Brown syndrome, then the surgeon is going to go into Joey's left eye and try to tighten up his wispy and loose muscle. 

So, to sum it up-- Joey will either have surgery on his tendon in his right eye or on his muscle(s) in the left eye.

As our surgeon told us, Joey is not "vanilla." Which I think is awesome. Oh, hell no, he is not vanilla. He is Rocky Road and he is also living life on the edge of the cliff and loving it. 

What in your life has pushed you to live life on the edge of the cliff? Has it made you a better person? 

Have a great week and if you think of it-- please send a prayer or two to Super Joe that he the surgery and recovery are not painful.

Happy Thursday!


  1. I'll be thinking of him tomorrow. And I love that last photo of your family!

  2. Beautiful pictures. Good luck Joey!

  3. Jen: Beautifully written and expressed--not at all "sappy." Love the way all your thoughts flow together cohesively.

  4. Happy thoughts and prayers coming your way for surgery! So glad you had such a fun, happy vacation! Love the family pic!

  5. Very well written! And by the way, I love Super Joe and have yet to meet the kid!
    The best thing that has ever happened to me was being diagnosed with Muscular Dystrophy. I "ran" from the prognosis for 14 long yes, but once I embraced it, my life has changed for the better. I can honestly say I am a better person due to it pushing me to the edge of the cliff and forcing me to really live.

  6. Hi there!
    Loved this post. Your little get-away sounds like it was well-deserved and awesome:)

    We are praying that Super Joe is on the mend and that surgery went well.

    Margaret & Cody

  7. Bests wishes that the surgery went well. Super Joe is in my prayers.

    The slower rhythm of being at the ocean and the healing properties of a week at the beach is sometimes the best medicine. We were pushed to the edge by the unexpected passing of my father, age 56, in the fall of 2011. My dad's unwritten rule, unspoken motto, was to enjoy life to the fullest. Our family tries its best to follow in his footsteps and do just that. The beach is where I go ignore the details and committments and just 'be'... recalling precious memories with my dad and making new ones with our boys.

    You are an inspiring mother and writer... how divine that you were chosen to be Joey and Tommy's mom and they your sons. Your words are a legacy for them - keep sharing.

  8. So much fun to read! We lived in Florida when Dev was Joeys age! So many great memories!
    It is so true that we are better people because of our kids! Dev is now 16 (Wow). She has a big sister and a little brother. We are blessed!
    Be blessed with the surgery, we LOVE rocky-road too!


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