The Novelty is not gone

Last evening, April 4th, we attended a Gala hosted by Jameson's Army. A truly spectacular event with hundreds of people, supporters and heart families complete with dancing and fireworks. Jameson's is a local 3 year old boy who had a heart transplant and to see him out of the dance floor with his parents, while in the distance the Doctor who saved his life is an amazing sight.  I not only admire JA and the doctors of CHP but everyone in attendance last evening as they took the time  to acknowledge the presence and impact of what JA does for CHP and the heart community still to this day.  Danielle, Jameson's mom is welcoming, understanding and compassionate to every heart family even those who children's conditions are not as life threatening as her own sons. Bill Crawford, the DVE host and last evenings Emcee told me a personal story he shared with Danielle and said Danielle told him, that's your child and what you are going through; this is what we are going through. That in my opinion is compassion and empathy.

There were heart families at the event last night whose children are currently in the hospital... showing support and thanks for all JA does. Families who lost a child, families whose children had transplants, pace makers and open heart surgeries. Each family was honored with a rose, myself included. The compassion, sense of unity and support was an extremely powerful feeling. Seeing the amount of heart families walking through the crowd to be acknowledged accompanied by applause is indescribable.

The heart children gathered weeks ago to do some "heartist" works of painting wine glasses, which in turn were sold to raise funds for the JA mission and they all were true pieces of art to be cherished. These proudly displayed works of art were as popular as the bar however the surreal feeling of holding such fine art in your hand surpasses any feeling wine may induce.

During a chat with a fellow heart mom, Lori, the author of Riley's Heart Machine, we both agreed that at times we feel as if our journeys pale in comparison to other heart moms and their children...however after hearing Danielle's comments I don't feel like that today and have my feelings in a better perspective. What we went through was frightening. I had 13 years of memories racing in my mind and I was scared that there may not be anymore memories to be made. Today I appreciate more than I did yesterday what Jameson's Army does, what every heart family does for you when the days are rough. Today I smiled a little wider seeing the JA infamous pillow propped ever so proudly on my 13 year olds bed.

All the same, it saddens me to say that just over 3 months ago my son had open heart surgery for a un-diagnosed congenital heart defect. From the moment we found out it was a rush of people checking in, calling, visiting, it was a revolving door which continued until a little after the recovery process was underway. The Novelty is gone now for the most part... many people think the fight is over and heart kids are better but the fight is life long, they are not better... they are temporarily "fixed not cured" as Gregory says. See Gregory still has leaks in his heart after open heart surgery, Vincent and Riley require pace maker,  Nolan is still in the hospital as is Ollie fighting every moment after open heart surgeries and transplants. Jameson requires biopsy regularly after a transplant Each day these kids and so many more are still battling CHDs. Each family deals with something different but equally horrible. The hosts and  attendees at last night Gala know this ...the novelty has not worn off.