When Simon was born I was endlessly correcting people who would say, “He’s adopted”. I would say, “He was adopted. It’s how he came into our family, not who he is.” This same phenomenon is happening with Ramona. Several people have innocently inquired, “Oh, is that because she’s DiGeorge?” And I say, “Well, the fact the she’s been diagnosed with DiGeorge might be related to…”

I know it’s a subtle distinction. It does not get me all worked up or indignant. It does not make their butts look big. But I think as Simon and Ramona get older, it’s important to communicate to them that their status as adopted or having DiGeorge Sydrome does not define them. It is only a part of their story and therefore only a part of who they are.

Someone made a comment when we first discovered that Ramona has 22q that it’s just a way to understand her combination of symptoms. What a wise remark. 22q is so complex and variable that every child is very different. So maybe it would be best if we just treated her symptoms and didn’t mention her 22q diagnosis at all. Maybe that shift in sympathy that I see in people’s eyes when I go from sharing about Ramona’s heart condition to sharing about her “syndrome” could be avoided by just leaving the last bit out. But how would this make Ramona feel? Would she think we are ashamed of her diagnosis?

The social worker who helped arrange for Simon’s adoption talked with us at length about privacy issues and what we intended to share about Simon’s history. At first I said, “We plan to be completely open, if people can’t deal with the truth, that’s their problem and there’s no way to protect Simon from that anyway.” She very delicately pointed out that we could choose to keep certain things private, things that no one else need know about, so that Simon could choose later in life how, or if, he wanted to share that information. And that’s exactly what we’ve done. There are a few tidbits of info that we have about Simon’s birthmother that we’ve shared with no one, not even close friends and family.

Should we have done this for Ramona? Withheld some elements of her condition until she’s of an age to decide for herself? Does being open about her diagnosis somehow degrade her or turn her into a syndrome instead of a child?

I confess that I have no idea where the line is. Where respecting her and her right to privacy might start to communicate to her that it is private because it’s shameful. Where my job to protect her and her privacy overrides the call we all have to be open and honest with one another. Or whether or not it might just be more prudent to play it a little closer to the vest. Someone even suggested that her diagnosis would have to be disclosed on job applications, etc. and that it might be best to just treat her symptoms and try and have all records of the 22q kept to a minimum.

So this is one of those days where I need some input. Please chime in. It has helped me so much to be open about Ramona’s illness and prognosis, but if that openess might be harming her, I’d like to know. Please also pray that both of our beautiful children will always know how loved and wanted they are. That they were made in God’s image and should be proud of the things that make them special. That we are here to protect them and are doing our best. Today’s pic was taken by Papa, so cute.

Thank you, Jane.