One of the things I found most difficult initially was that everything was such a shock. It was hard to think straight, especially when there were so many different opinions about the various aspects of my daughter’s complex condition. We didn’t find out that there were any issues until my daughter was four and a half months old. Then we were then suddenly thrown into a world of medical decision making that we weren’t prepared for and we are still in that world. A lot of people, expert and non-expert, have told us a lot of things about our daughter. We have received information, advice and judgment from dozens of doctors, health professionals, random strangers, friends, and family. I usually listen carefully, because sometimes it is extremely useful. But sometimes it just isn’t. Occasionally it’s life changing. And sometimes it’s downright incorrect or even hurtful. And often, all you want is an answer, and no-one can give you one.

It is easy to feel pulled in different directions. But the one thing I try to remember is that we know our little girl in a way that no one else ever could. We have known her the longest, heard the most opinions about her and been with her through more situations than anyone in the world, because we are her parents. For now and for the foreseeable future, we are the most important people in her life. Although our roles are challenging, this part is simple: Trust yourself. You know your kid better than anyone.

Emily.