Letter to Family and Friends (secret post 12/5)

One of the organizations I have found (Mended Little Hearts) has some great resources.  And they have this letter for people to send out.  I have read it several times, and it really does speak to my heart. I have not changed it from its written form. 

Dear Friends & Family,
 I need to let you know that my child has been diagnosed with a congenital heart defect (CHD). It was very scary and very hard to find out my child has a heart defect. Right now, I could use your help and support.

There is no known cause of CHDs at this point, so there is nothing anyone did or did not do to cause my child’s heart defect. Parents can do everything right prenatally and still have a child with a CHD. CHDs affect people of every race, cultural background and socio-economic status—they do not discriminate.

I know you want to be helpful to me, so please don’t tell me that things could be worse, that I should be grateful for all we do have, compare my situation to anyone else’s, or give me advice. Please do listen when I need to talk to someone, help me even when I don’t ask for it, and send me emails, texts, letters and cards to let me know you are there for me and you are thinking about me. Please just be there for me, and let me grieve if I need to—even if it takes a long time.

Interestingly enough, CHDs are the most common birth defect in the United States, affecting about 1 in 110 babies (40,000) each year. Around 25% of children born with a CHD will need surgery or other interventions to survive. There are about 35 types of CHD, and some children have a combination of two or more. For some types of CHD, there were no surgeries or procedures to help them survive until fairly recently. Luckily, many children born with CHD are now living well into adulthood.

If you want to learn more about my child’s condition, please ask me the name of it and go to www.mendedlittlehearts.org under CHD Resources to learn more.

Don’t feel afraid to be around me or my child, but if you are sick or even think you are sick, please don’t visit or let anyone else visit us who may be sick. Don’t be afraid to hold or take care of my child; I will let you know everything you need to know. Please treat my child like a normal child and not like a sick or fragile child. My child is strong and brave.

If I become less social than I was, know it is not about you, but that I am trying to cope with changes in my life and my family’s life. Know that sometimes I feel like I don’t fit in with “normal” parents anymore, and I may be a little quieter for a while. I feel it’s not fair that my child was born with a CHD, but I am trying to accept it. I hope you will too. Sometimes, I need to talk to other parents of children with CHD because they have walked this path and truly understand it, but that doesn’t mean I don’t value your wisdom. Know that CHD changes people, but in many good ways too.

Thank you for being there for me during this time.