I was recently put in contact with another family who have a child with CHARGE syndrome. The family has been going through an especially rough time recently. Many kids with CHARGE have varying circumstances, and that is the case with this little one. She has severe conditions that make life difficult for her and her parents. The mom was recently sharing on her facebook page that she was considering respite care until they were able to get things figured out. She put this on her public page that is there to inform people and to give people a way to encourage this family. Rather than offer encouragement however, she was offered some terrible criticism. I find this is fairly common with facebook at times, but it should not be. When someone has a page like this, take the time to encourage, not discourage.
It is so easy to judge if we are not in a situation. Someone not there experiencing the long nights and long days might tell someone to just deal with it. I know how this young lady feels. Sometimes all you want is a break, and you really cannot have one, because you and your spouse are the caregivers, and not many other people can really do what you and your spouse can do for your child. Leaving your child with a babysitter is not an option, and the thought of getting nursing care is scary, because just like in the kitchen with too many chefs, too many helpers with a child like this can only cause problems.
I know there are others out there who feel the same way as this young lady going through this time. This lady's husband has now chosen to resign from his job and try to help his wife to care for their child until a job that works better for them comes along. These are big decisions. Families like this need to be covered in prayer not pessimism and criticism. I just want to encourage all of us not to judge before we know the circumstances. You do not have to have a child with special needs to understand to some degree. You do not have to go through our struggles to empathize. Please pray for this young family. She asked people to share her facebook page, so this is my way of doing it. Please like the page to encourage her, but pray for them as well: www.facebook.com/HarpersHeart