The Reality of it All

This hit me last night and I shared my feelings with Rob. .I thought this was worth sharing, today. Really, I just felt compelled to write.


I write this for the families who cannot put into words how they feel. For the families who face a harsh reality every day.

(Age 8.5- Mexico)

As I read and listen to the comments from friends, family and colleagues regarding last Friday's events at Sandy Hook, I become more and more aware of the intense anxiety so many are facing. Worries run the gamut, but mostly focus on how much people love their kids, can't imagine living without them, are anxious sending them out in the world, couldn't imagine planning a funeral, plan to live life to the fullest and cherish every smile, laugh and moment. These are new and overwhelming emotions. They are awful and difficult to deal with. They can be consuming. I am so sorry that you are experiencing them.

I have felt them every single day for the last eight and a half years. Each day, every one of these concerns is in the back of my mind. To be quite honest, some days, they are in the front of my mind. You see, my reality, and the reality of every parent/family member of a child with a chronic health condition, is what you are experiencing now. We do this every day.

A flashing light indicating voicemail, mid-day at school, makes my heart race. In the thirty seconds it takes to play the message, typically from a concerned parent of one of my own students, I run thorough a zillion scenarios regarding Hayden. Then, I breath. Until the next worry comes along. And it always does.

I have spent the past eight and a half years hoping, not expecting,to reach milestones. I just wanted him to come home. I just wanted him to remember how to eat. I just wanted him to walk. I just wanted him to make it to Kindergarten. I just wanted him to not get that cold/virus/bug his friend had. I want to see him reach his Bar Mitzvah, graduate from high school, go to college...And my list goes on.

I have known for eight and a half years that there are no promises or guarantees. Most of you are feeling that, now. For you, this is fleeting. ( Seems hard to believe, but it is.) It may not feel that way, but soon enough, you will go back to your regular lives. This will become an event of the past, albeit a horrible one. Normalcy will be restored.

For me, and all of the other families out there with kids who have chronic health conditions, it never, ever goes away. The worry. The not knowing. ( That is the worst.)

With all of that said, don't worry about me. I am fine. I am more than fine. I am happy and so blessed. My family laughs ( like crazy), loves ( passionately) and lives( every day to the fullest) . We, like so many other families out there, have no choice. It is always our reality.

( Age approx.  10 days- Johns Hopkins Children's Center)