LOVING THE PERFECT STORM...

Two years ago today Superstorm Sandy shattered the east coast. Lives were lost, homes destroyed and the once beautiful Jersey Shore, where we live, now looked like a impoverished third world country.

I remember the day very well. I was at the Children's Hospital of Philadelphia with Caden. He had just had surgery to "tie off" the upper part of his stomach to prevent him from refluxing and vomiting. As I lay in his bed holding him tight, all I could think about was what was happening a hundred miles away at home with the rest of my family. I maintained contact with my husband for as long as possible but eventually the phones went dead.

It was a very helpless feeling. I remember, at one point, talking to my husband begging him not to take Emily and Ethan out of our house. He was worried a tree was going to fall on the house and decided it would be safer to bring the kids to his parents who lived on the water. Not the most logical decision, but in the end everyone was okay and I understood his need to be surrounded by family as I so desperately wanted to be surrounded by mine.

We were lucky. The storm left us without power for over two weeks but we had no damage to our home. Caden made it home two days later and although we had been displaced, I was forever grateful to be together as a family again. 

Superstorm Sandy changed the face of the Jersey Shore forever. There are still people who are not back in their homes. People are still waiting for their government aide. Some continue to grieve the loss of loved ones. Although the storm has passed, many lives were forever changed.

A Different Kind Of Storm:

I would never compare Caden's life to Superstorm Sandy, but remembering that day has made me reflect on our journey over the past four years. Caden is our Perfect Storm. He is the most amazing person I have ever known; a perfect little boy who has forever changed my life. However, everyday is like waiting to see what the "storm" will do next.

For Caden, the storm will never end. We may sit in the eye of the storm for a while, but we know the winds will pick up again and the flood waters will eventually rise.

Today, we are enjoying the "eye". The winds are calm; Caden is "healthy". We are getting ready for Halloween and preparing to enjoy the many upcoming holidays with family and loved ones. I love the "eye" of our storm. It is so peaceful and tranquil. The skies seem brighter, the air fresher and the smells sweeter.

But no matter how much I enjoy the "eye", I am always anticipating the storm to commence again. Why? Because that is what happens when you love a little boy like Caden. Today may be good, but tomorrow is a whole other story. It can happen like that; so quick you forget the moment things went bad. Now I know this can happen in anyone's life but most don't go through each day waiting for it. I do.

I realized yesterday I am not alone. I was talking to a Mom at my daughter's dance class who has a son with Cystic Fibrosis. She, too, is waiting for the flood waters to rise. He has been "healthy" for a while and as much as she is enjoying his stable health, she is waiting for the storm to rage again.

Caden has not been  hospitalized since April and as happy as I am, I cautiously wait for the next tidal wave to hit. Especially this time of year when he is at a higher risk for respiratory infection and illness emanates every where.

Now this is not to say I have my bag packed and am ready to go. I refuse to live that way. But I do have to remind myself to be diligent and cautious. As much as I want to make Caden a part of everything, I have to remember he has a weak immune system and his body can not handle what a healthy child's can. Pros and cons of life's experiences have to weighed. He can not live his life in a bubble separated from the joys of childhood, but we must consider all possible consequences.

Caden is my PERFECT STORM. He is the most perfect person I have or will ever know. But when the storm hits, it can cause more damage than what can be repaired. Each hospital stay weakens his body, mind and spirit. As it does for all of us.

I know the storm will resurface sooner or later, but in the meantime, I will enjoy the "eye" with all it's beauty, simplicity and hope.