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)

It's all New



" Pop, Welcome to the Zipper Club!"

 So, the past few months have been busy with lots of cardiac adventures. ( Isn't that a fun name for them?)
On the positive front, Hayden is doing great. He had a  Cardiology check up on August 2nd and  there was much good news to report.  The boy has gotten taller and put on weight. More importantly, his heart function looks better than ever and his tricuspid valve leakage is now considered MILD!!!! ( That is a really, really good thing). He even got to drop  one of his meds, and, it was a diurectic. His next check up is in April. That's right, eight months. That is the longest we have ever been allowed to go and we couldn't be happier. I  have 7 more months before I feel like I want to puke in my purse:-) ( That is how I spend the week prior to  Cardiology appointments. Yes, I lnow howe utterly  irrational that is and I plan to continue doing it. Thanks.)
On the less than positive front, my father decided he wasn't getting enough attention and needed to be part of the cardiac adventure, too. While inpatient  for a hip replacement, it was discovered that he had a 95% blockage to the main artery of his heart. He needed bypass surgery. He  was hospitalized for  seven weeks and faced  multiple complications. Some folks will do anything to get  more attention ;-)
Hayden tried to offer up advice, but really can't remember much of his hospitalizations...thank you ,Didaudid. So, he  decided to pose for the picture above, write his Pop a  note and welcome him to the zipper club.( I know many of you have not seen H's chest. He actually isn't shy about his scars, at all. He just likes to wear surf shirts, a post-op necessity that has become habit for him. Hope  you aren't put off  by it. They are all part of H's story.The  smaller ones are all from drainage tubes/pigtails, the long one is from his open heart surgeries( duh), the one on his mouth is from a sore caused by being on a vent and the one near his neck is  where he was prepped for ECMO- but thankfully, didn't need it.)
So, as I type this and reflect on the time of year, I can't help but feel a great sense of appreciation that my two heart warriors are doing so well. I know that even though the past few months have  been difficult ( and my Dad still has  much recovering to do), we are blessed in so many ways. As we gathered together last week for Rosh Hashanah, we noted  how blessed we  were to all be  together and to simply be. This evening and tomorrow will bring more reflection on the past year and optimism for the year to come. I know my fast will  be meaningful this year, as I have much to reflect upon. I also know that blessings come hidden under the icky stuff, sometimes.
I hope this New Year brings health, happiness and peace to all of you.