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Thursday, August 8, 2013

The Big Diagnosis

Being diagnosed or having a child diagnosed with a liver disease, as with other diseases, is a traumatic experience. There were many things I learned, as did the main character of my book on Biliary Atresia (Angel Donor) at the onset of my child's liver disease. After battling the emotions that go along with something so scary, I found some things to be helpful. Here are some tips I came up with during our ongoing battle with, liver disease and transplantation:


  • Stay Calm - take a deep breath and remember to care for yourself and your child. Remember, you can't help your child if you aren't yourself. He/she needs you.
  • Find Support-While it is important to remain clam, finding support for yourself is equally important.Joining a group with others going through similar issues will help empower you and help you learn more. Remember, however, never substitute this information for your doctor's information. The doctor knows your child and his her condition. 
  • Don't Forget Date Night-Many times marriages suffer when a close family member is ill. Be sure to keep those dates with your spouse. Single Parent? It is still important to get out. Make plans with friends or siblings and have a good time. Taking time for yourself makes you a better parent to your child.
  • Trust Your Doctor- Be sure you follow your doctor's advice. They have seen many things, medically, and they are working with you to help your child. That said, don't be afraid to ask questions if you don't understand something, or speak up when you feel something is wrong. Your input it crucial!
  • Write About It- Use a journal or an online journal to record your experiences during this time. Record the ups and downs and how you got through them. Online journals,like Caringbridge also allows you to share updates with families and friends, which is useful for those late night E.R. visits and everyone wants to know what's going on.


Below is an inspirational image I created. Please share it as Olivia and I hope to help as many families as we can.