Ignorance is Not Bliss

Today is somber. Today a fellow CDHer is being laid to rest. Many others fighting for life. CDH families are left heartbroken, devastated and lost. Those with survivors feel guilty because their baby survived when so many others didn't. Parents of survivors are being judged because their child isn't "normal". I read a heartbreaking post which in simple form stated "ignorance is not bliss". I got to thinking. No it's not. It's hurtful. You may say something, thinking your helping when in turn your actually hurting. It happens daily. We just don't realize it. Having a little girl turn her head so you can't see her feeding tube and saying "now we can't see that thing on your face, and your pretty like a real dancer is supposed to be" (part of the article I read) isn't helping. Instead your breaking a heart. It's happened with Liam on many occasions. The other day a lady looked at Liam when he coughed and said "oh she's sick too. It seems all these babies are sick right now". I was furious. I had had enough. I was tired of judge mental people and I let my temper get away from me. I looked at her with a smile that wasn't really a smile and said "no, HE has chronic lung disease" in a sweet voice. I couldn't help it. Her and her husbands face dropped. She couldn't filter her response fast enough. She apologized and it seemed "sincere" until her, her husband and the little boy with them high tailed it away from us as fast as they could. It was like they were afraid they'd catch it from them like you would the flu. I could only shake my head. They had treated us as if I had said Liam had Ebola or some other highly contagious disease. You see, because these people didn't understand, because they were "ignorant", they were hurtful. It happens all the time. So please, don't judge the mom with a coughing kid whose out in public. Or the one whose checking her kid for a fever. Or one with a feeding tube. Or a kid on oxygen. Or a kid without hair or scars everywhere. You don't know the situation. These kids just want to be treated like every other "normal" kid. They don't want attention brought to their differences. And the parents don't need any more stress than they are already under going because taking a kid out with medical problems is stressful enough. We do it because our kids beg. They want to do "normal" things and we don't have the heart to continually break their hearts. ❤️❤️❤️ #cdhawareness #chroniclungdisease #thinkbeforeyouspeakoract