I can not say... but adapted, hoped and prayed

As time goes by people change, adapt and grow. As the years go by, life is not as easy as it once was or maybe it is that you are required to take life and the hurtles a little more seriously. I can firmly attest, I am not close to being the same person I was a year ago and definitely not the same person I was 4 or 5 years ago. Life has happened and I had no choice but to adapt. Sometime life happens in a single moment and then sometimes it happens over time. I believe in my situation it was a little of both. Over the course of the last few years I have increasingly settled down however in the last six months is when the real changes occurred.

I can not say I understand what some parents with children born with a congenital heart defect are going through, however I do have compassion and a great amount of empathy for them.  I can not say what it is like to find out when you are pregnant that you child has a heart problem and not know how the first moments of their lives will be. I can not say what it is like to have a child and think these are the best moments of your life thus far, only to have the rug pulled out from under you and learn at their birth they have heart problems and will require surgery. I can not say what is like to not be able to bring your child home for months or not at all. I can only imagine what it must be like to have hopes that you will be able to have a normal baby, one you can hold and cuddle and play with at home... not in the confines of a CICU. I can only imagine what it is like to wonder if your infant child will walk, or talk or live to see another day.

I can say what it is like to have a child with a congenital heart defect. I too had a child born with a hole in his heart, I too had a child whose valves just did not properly work... I didn't know.  He was so small he looked like a porcelain doll. He didn't nurse well, it took he forever, he didn't grow as fast as the other kids in his growth chart, he always perspired more that normal and breathed extra heavy while he slept. Looking back, these are all signs of a problem but we were never alerted, he was never diagnosed. He was happy, we were happy. He played sports and for the last 3-4 years he just didn't grow. He remained between 75-80lbs . I asked why he was at the bottom of the growth chart for age and weight and was informed he was always in that percentile and I need not to worry. I asked why he was not growing a big as the other 11 & 12 year olds and was told his fathers family is small in stature and he had not hit puberty yet. I can say I know what it like to be told your child has a congenital heart defect and will require surgery. I know what it is like to walk your child into the operating room, to hand him over to strangers that are going to stop his heart to fix it in hopes that it will restart. I know something that the new parents don't ... I know what it looks like when you child completely understands what is happening, the risks associated and I know what the look of  that complete fear looks like. I know what my child looks like when he is wondering if he is going to live to see another day.

Everyday, thousands of children are hospitalized for congenital heart defects, while the majority of them are between the ages of 0-4 years old that will need to undergo an invasive corrective surgery. Every heart parent stumbles at a faint cold, and freaks out over a temperature. Every heart parent is over protective because of the fear of loss will always be fresh in our minds. This past week we went to a Gala where there were several families that underwent surgeries. Some of which their children are in the hospital, and some have been since birth. Some families were there when Gregory had his surgery, and are still there battling CHDs and last night a warrior lost his battle against CHDs. He is wearing his angel wings today... and once again I can not says what it is like to be that parent, I can only give them my unconditional love and support. That is what heart families do, support and love when others need it most because everyday is a difficult day and some days are unfathomable. Today is that day, they don't wake up to their child lying there with tubes and lines, their child is gone. Everyday of that warriors life was adorned with the will to fight and live when all the odds were against him.

What I can say is everyday is gift whether you have a sick or healthy child. Children are not to be ignored or pushed aside when you have something more exciting to do. Our children, whether sick or healthy, need us to guide them and support them, love them and nurture them and intern our children grace our lives for a reason; to settle us or strengthen us, to teach us to love or to be better than we were yesterday. They force us to adapt and grow. Everyday you should love your children more than you can imagine you ever could, and way more than you do now and please do not take them for granted... because there is a possibility that tomorrow is the day something will change and everything you thought was will never be the same. You will  have no other choice but to adapt, hope and pray.