Ending and Beginnings......Part 1

In the last few days I discovered I had not posted since the end of May. So I am going to attempt to catch up over the next few posts. Since the Memorial Day Holiday life spun out of control. Besides my involvement with Levine Cardiac Kids (LCK) and Family Advisory Council (FAC) at Levine Children's Hospital and the required meetings, I feeling like I have been chasing the bus I missed.

I attended a meeting at the hospital where we invited families who had recently joined LCK. We met some amazing families. I met the Jackson family whose son is in the hospital now and earlier last week had his third open heart surgery and reached the 100 day mark in the hospital. I am not going to lie I felt incredibly blessed Madelynn was only in the hospital just under 30 days all together. The strength it requires to be a parent of a heart patient or any other chronically ill child is almost unbearable.

In talking to some of these families and my heart family friends, I discovered something I am not sure I ever did until recently. At some point in life you have to grieve the loss of the perfect baby with all 10 fingers and toes. You have to let go of the normal life you dreamed about and accept the massive curve in the road during a rainstorm that is now your life.

For us personally, we had to accept all the 'ologists', the revolving door medical bills and most important find the new "normal"; what ever the he** that is. I used to shelter Madelynn and I believe in some cases hold her back. But I have discovered when given the chance to fly she will soar with the best of them.

Don't get me wrong there will always be that reality check when  we walk through the pediatric cardiologist door and I mentally hold my breath until we walk out. Most parents just get an annual physical for their child, Madelynn also has to get a heart and lung check too. Because of the way Madelynn was diagnosed, I am always leery walking into the appointments. I will never assume everything will be fine again.

On a day to day basis, I let go of that stomach twisting chaos and focus on the fact that Madelynn will be four at the end of the summer, can write her name, log-on the computer and play games and asks a plethora of questions everyday. The amount of questions she wants answered is absolutely exhausting. However, I just remind myself it is how she learns.

Every heart family has a different but similar journey and are also at different mile markers on that road. Knowing we are all traveling together and there are certain things you never have to explain to them is a huge comfort. I am grateful to them and hope I can always return the favor to new families.

TTFN~