February 1, 2014
It's February 1st. I find it ironic that I spend the last day of January celebrating the life of my heart warrior and then the month of February fighting to raise awareness for congenital heart defects (CHD). Before Josh I had never even heard of CHD, I had no idea that kids were dying all over the world, daily, because they were born with broken hearts. I thought heart problems stemmed from blocked arteries & poor health choices and I thought kids who died from health problems had cancer or cystic fybrosis or some other ailment that could be caught, and fought. I had no idea and I know that there are still millions who still have no idea. CHD doesn't discriminate, and it can't be cured, there is no prevention and if you ever sit in the fetal ECHO lab and get the news your world will never be the same. That one conversation changes all your hopes and dreams, it changes the path you were on, it changes your relationships, it changes the very core of who you are.
Just this past 2 months alone I have heard from 3 families (in my small circle alone) who have lost their little warriors to this often fatal illness. It's path of devastation reaches all corners of the world, it touches the wealthy and poor alike, and anyone touched by the hand of CHD, the kids, the parents, the friends, the Grandparents, the aunts, uncles, sisters and brothers all face the battle together and yet they also fight it many times alone; because unlike most childhood illnesses, CHD is not a 'known' illness. The kids look (for the most part) like any other normal child. You just have to look at Josh to see the truth of that. When he is playing with his friends or running around the house you would never know that deep within his chest cavity rests a broken heart.
The sad part of CHD comes in the knowledge that there is no cure. You can't take a pill or start a treatment program to make it all go away. You won't go into remission, you won't one day get a test result saying you have beaten it. The best outcome you can hope for is time, time between surgeries, time for the doctors to research, time to live. The lucky ones (and that number grows as research progresses) live to see their adult lives, but then of course they face the uncertainty of life in the adult care system. A system I will discuss in more detail as we move deeper into 'Heart Month'.
This February I ask you to take some time out to learn more about CHD, to read what I post here regarding CHD and pass it along on Facebook, twitter, email and any other social media you may use so that together we can raise awareness. With awareness comes knowledge and with that comes hope. Hope for more funding, hope for more research, hope for more kids living to see adulthood, and hope for an adult system that can take care of these special hearts. Heart families do not need to be alone in this fight, you don't need to wait to have a child born with a broken heart to spread the word.
I am not asking for money. I am asking for your time, and I am asking for a simple click of your mouse (or finger) to share each post regarding CHD. (Though if you do have spare cash around and are looking for a good cause I have many organizations that I would happily direct you to.
Many blessings friends. I value each of you and your loyalty to this blog and to our family. I look forward to sharing all that I can with you about this killer that stalks my son and many other kids like him.