What does it mean to parent a child of a chronic illness. It means being stressed, tired, nervous, exhausted, emotional, and at times inspiring & eye opening.
Sometimes we fib and say we are “good” when people ask how we are doing. Honestly its just easier than going into how we are really doing. We don’t want pity. Many times people wonder when the illness will go away or when the child will be “fixed or cured”. We know those aren’t words being used by the doctors or surgeons. We are looking to reach a level that allows her independence with her disease. Or to find a piece of equipment that allows the child to move around easier.
And sometimes just sometimes we find those who truly get it. Those who have kids fighting chronic illnesses or rare diseases right along side ours. And those people, those are the ones who don’t ask how are you. They just say I’m here and what do you need today. They see the arguments with the insurance companies and they find you the person to call or show up with the supplies your missing. There are those who come to sit with your kid in the hospital so you can eat food that’s not hospital food for one meal.
This is a journey we hadn’t planned on but we are happy to have met some great people and friends along the journey