A Guide for Family Caregivers of Loved Ones with Rare Diseases
Nothing in life is to be feared - only understood.
One day we are a happy family living the dream, then after one doctor’s visit we are thrust into the cruel world of being a family caregiver of a child with congenital heart defect. After loads of tears we are hit with the emotion of guilt and anger. And we ask ourselves what did we do wrong and how can we FIX our child!!
Immediately my wife and I researched to find out every little bit of information we could possibly find out about CHD and why did it happen to our child. We felt ourselves getting angry with each other while still trying to be there for our child.
The one bright side of all of this is the great support we received from other caregivers of children facing similar problems. The strength given by these complete strangers is incredible. In fact, to us they have become our extended family. We depend on each other for information, we share experiences that only another caregiver would understand. We have gotten more useful information from this community than any professional medical staff member.
One fellow caregiver family wore the same t-shirt to every meeting that I attended it stated: “Nothing in life is to be feared. It is only to be understood” by Marie Curie. I asked them why that shirt and why that quote and they said – they said that to them nothing could change what is happening to their child, so they embraced it and they just try to make it work so their child could live the most productive life they could.