A not so simple question...
Ever since I started reading your blog, it seems like I know you. At least I know where you are coming from, since we are both dealing with the aftermath of prematurity. I have been wanting to ask you if you have found a reply to that question that everyone asks, "How's Paige doing? She looks great." I'm asking this because I have yet to come up with an appropriate response. Whenever someone asks "How's Daniel doing? He looks great." I just let out a big sigh. I never say the right answer. I don't want to glaze over it, like he's a walking miracle but at the same time, I don't want to get into his medical issues. And somehow I always end up walking away upset. Because normally, I say yes, he's great. (Daniel is usually within ear shot). If they start asking more questions, I feel an obligation to say he has some issues, but we're dealing with them. I try to keep the conversation light, but people can be persistent and when you tell the whole truth, I tend to get feedback like, "we'll you didn't think he wouldn't have problems. It could be worse." I am starting to think that people don't want to know the truth about prematurity. I just wish there was a good reply for this simple question that I can't seem to avoid and expect to hear for the rest of my life. So, if you have found the answer to this question, please share it with me. Thank you and thank you for all your work. Your blog is truly an asset to the preemie community.
mom to Daniel, 6 (24 weeks)
PS, if you don't have the answer and want to share the question or content of this email on your blog, you have my permission.
Your question of "what to say when asked how he (Daniel) is doing" is not so simple. For me, it changes both by the day and by who is asking me. Now there is another factor... whether Paige is with me or not.
I first wrote about it here How is she doing?
If Paige is not with me, no matter who asks, they get the truth... all of it. As I start to talk I can tell if my words are going to fall on deaf ears. I'm sure you know the look. It starts out with a glazed look in their eyes and then their facial expression says, "I didn't want to know the all of this. I just wanted you to tell me she is fine so I can go back and tell the world that all preemies turn out fine." To these people I usually shorten the update, but still tell the truth. Years ago, I never used to be honest. I always said that she was "fine" and left it at that. No longer do I do this though.
Again, if Paige is not with me, and the conversation turns to resuscitation, I am honest about my feelings. I never try to make others understand how I could feel this way, but I do make my feelings known.
Now, if Paige is with me it gets trickier. My standard response is "she deals with the typical long term issues related to prematurity and has escaped some too." and then I usually go into being the typical proud mommy and brag about her school accomplishments and how she is such a wonderful big sister. Some people will ask me to elaborate and I ALWAYS ask Paige for permission first. Always. Last year Paige asked me to check with her first before I talk about her. She said that it didn't "really" bother her but I could tell that she was feeling something that she couldn't verbalize. I honor that request. So far, every time I've asked, she's gladly agreed and usually starts to explain on her own. It's fascinating to watch.
But, we came up against a new situation recently. Paige was the star student of the week a few weeks ago. I had to write a letter about her and include pictures. The letter was to be read by the teacher, to the entire class. Paige asked me to talk about her early birth in the letter and include a NICU picture. I wasn't comfortable with this because I wasn't going to be there to explain what all of the wires and tubes were for. And, she is now of an age where the kids tease each other. Instead I chose to include her birth footprints, which are super tiny of course.
As she exited school that day I could tell something was wrong. Paige told me that they had a substitute teacher and that the sub read her letter. After the letter, the sub asked her if she was OK now. Paige responded by telling her everything that she deals with. Everything including the mental health stuff. I could tell that Paige was upset about this exchange. She has no problem telling docs anything they need to know but this was asked in front of 20 of her peers. Paige told me that she didn't want to answer the teacher but didn't know how to avoid it. Her and I sat down and came up with a plan in case that happens again and I told Paige that I was sure the sub learned her lesson. I wish I could have seen her face when she heard my sweet beautiful little girl talk about her life.
I wanted to be angry. I really did. But, all it did was reinforce my belief that the general public is seriously misinformed on the long term issues related to prematurity.
The above represents my experience Tammy. I hope everyone will offer their advice to you on what to say when someone asks, "how is he doing?"