There is kind of mourning that comes over you when your child has a chronic illness. It is strange to think of mourning over someone that is still with you but it happens. As a parent, you have hopes and dreams for your child. Things they will do, running, playing, going out with friends, attending school dances, etc. When that does not happen, or in our case, it did happen but then it all went away, your life, as you know it comes to a screeching halt! You are left wondering what in the heck happened and how it all changed?
As time passes, more and more questions come to mind, but there doesn’t seem to be any answers. Then there is the guilt. Guilt of feeling mourn when you have friends that have actually lost a child. Guilt that somehow this is your fault (in my case, it sort of is since one child inherited Panic Disorder from me) or the guilt you did something wrong in raising your children. Maybe the choices you made were not healthy enough. You also feel anger and frustration. There are plenty of reasons to feel these things, no matter how hard you try not to. Anger and frustration go hand in hand and there is plenty of things to be angry and frustrated about.
Good New/Bad News
The good news, I guess, is the guilt, anger, frustration and even the questions don’t stay in your head long. The bad news is they can’t because you don’t have the time for them. Too much time is needed caring for your children, researching how to help them, visiting doctors or late nights just holding them while they hurt. All this while trying to work, run a household and continue the outside life as normal as possible.) MAN, I seriously do not know how parents with terminally ill children do this?!?!?!?! We are lucky, our children do not have terminal diseases, just chronic. It makes me want to cry whenever I think of my friends going through so much more than we do.)
At times, it can feel like a dream or alternate reality. Often, the feelings I mentioned can be very destructive in a family. We are truly blessed to have those feelings actually bring our family closer together. We have a trust that is extremely special and strong. We truly lean on each other. Our doctors have even noticed it and compliment mt husband and I on it. But the truth is, it is God who has kept us together. Without Him, I honestly don’t know how we would have come this far. We almost completely lost faith in Him, but we walked away but we are on the way back, back to Him. We continue to look forward to the future with hope, that our daughters will heal completely. And that, is worth fighting for every day.
Till Next Time,
Rebecca & The Gang
Finding Our New Normal