Ok... Good... Fine... ?

While I love being around people there are some questions in our social society that are just complex. The biggest one of those is the question "How's it going/how are you?" In most social circles the only truly acceptable answers are short, one word, and normally "good, ok, or fine." While the response to our awkward greeting question has always been more of a habit answer, I am struggling with this habit.

See since having Jillian many people have asked us "how is she" or "hows it going?" Jillian makes this question complicated.

See for Jillian fine, good and ok mean something a little bit different. Her good for the day might mean that we have only had to do a neb every 4 hours instead of six. Her fine might be that her med port popped open and "burned" her skin. Her ok might mean that we are celebrating not having to spend time with any doctors that week. 

I am torn when people ask me this question...
1. Do they want the real answer of how everything is going including info from doctors and therapies and sickness? Are they looking for the details? Sometimes I find the details of our lives to be a little overwhelming. I have told people the story of the past 18months sometimes and they look at me like I just ran them over. They don't know how to respond and I don't like to make people feel that way.
2. There are other times were emotionally I just can't get into it. When I have been up all night watching my child breath, sometimes I just don't want to give an answer. Sometimes I just want to shrug my shoulders and hand someone a business card with the url to my blog. (which I have never done... but thought about)
3. Sometimes people really just want the generic answer and thats ok I guess. Sometimes I ask people that question and I am doing nothing more then fulfilling a social obligation and I should fully expect that others do the same.
4. Sometimes I tell Jillian's story or how her week/day/hour is really going and I get the line back "well she looks fine to me." Aside from someone telling me I am a crap parent, that line is one of the most hurtful things I have been told by people who truly (most of the time) are not trying to hurt me. It feels like everything we do is unvalidated in that statement. I know I should take it sometimes as a compliment; that we are working hard enough so the outside world does not see her struggle. That we make her look "normal" enough that she fits it. Maybe someday I can see that phrase that way, but I'm not at that point yet. Jillian gets sick fast sometimes. You might have seen her the day before and she might have been fine and by the next day we are in the hospital. This has happened before. Just because she might look "fine" to someone who does not know her well does not mean that it has not taken multiple pharmaceuticals for her to be able to function that day. We work hard to give Jillian as normal of a childhood as possible and for us this is our normal, but somedays the fine is a big illusion. Jillian is typically happy, even when she is sick and many people mistake happiness for health.

But out of all of that the thing that I probably struggle with the most is that I have yet to figure out a way to share our story and show all the JOY that we have in our lives. Many people hear our story and feel bad for us. Pity is not something anyone wants. Even through all of this I have so much JOY! Even though some nights are hard and some days are daunting, I still have joy. I'd be lying if I did not admit to the tears shed in this journey (we do have a little girl that they are looking into what rare genetic disorder she has and any many of them don't paint a pretty picture)... but I still have joy.
If all people do is hear our story and feel sorry for us they missed the story. They missed the joy. While no one goes into parenting hoping for it to be full of hospitals and doctors, we have chosen to find the joy in all of this. (sometimes I am afraid that this will go the other way and people will mistake our finding joy in what life brings as us wanting all of this to happen to our little girl and that is absolutely not true either). We could either chose to love our little girl despite all of this and find joy in our everyday life, or we could wallow and live life angry. That would get us no where.
We choose to find joy from the ONE who gives joy. Without walking with Him through this I think that this would be a very different story. We will keep looking to Him and He will keep filling us with a joy that is not of this world. A joy that cannot be explained any other way then by saying that it is from Him.


So if you ask us how we are, expect that it might be a long answer or a short answer. Know that if it is not very detailed that my shortness might have nothing to do with you. And if we choose to really share what life is like that moment, be willing to listen with open ears and look for the joy in our story, even if our heart is heavy that day.