To extend the metaphor, I could figure out what the currency is, what the economy is like, where the local grocery stores are, what roads lead to what areas. We'd have neighbours. We might have a neighbourhood association. Maybe even some tourist attractions.

Instead we live in Francesville, and it's a beautiful country, but we're the only ones here and we don't have a map. There is a government, but they are shadowy and mysterious. They make their decisions behind closed doors and keep the legislation and policies in a dark basement that we can't find. There is no language because there are no other natives.

The park is beautiful. The garden is amazing. The food is delicious, if the portions are a bit small and we have to crimp our legs underneath us to sit at the little tables and chairs on the restaurant patio. We don't want to leave. We just want to know where we are.

The entire country is maybe the size of a city block. Big enough that we're comfortable, we three, living inside it; small enough that lots of people pass by on the borders and peer in to see what this tiny little kingdom is doing here in the middle of their town. "What are you doing in there?" some of them shout. "Why don't you just leave?" Some of them scurry by with pitying or frightened looks on their faces. Some of them are friendly and stop on the borders to chat, willing to try one of the miniature pastries.

Those visits are wonderful. We find every bit of commonality between our two nations and rejoice in it: Yes, our nights too seem to be only about two hours long, but we get several of them in a row; yes, it's gorgeous, but by cod it's loud; yes, it's all a bit crazy and unexpected. And then they say, "And it's all moving so fast now! And getting bigger every day. I swear I can't see my own house from my driveway anymore." And I smile and nod my head and think I guess we're not in the same country after all.

We have visited other similar countries--say, Ireland. Lots of Little People. Lots of big parents ambling around, trying to look comfortable on the small chairs, knocking their heads into shorter-than-expected doorframes. It is a great place to visit, Ireland. But it's not home--Ireland is a wonderful country populated by many hundreds of thousands of people who have a diagnosis, normally achondroplasia. As in conversations with our own neighbouring countries in Francesville, eventually the conversation changes from one filled with comfort and head-nodding to one in which I am smiling politely.

They KNOW, those other parents. They have an idea of how big their little people are likely to get. They know what kinds of therapies, treatments and surgeries they are likely to be offered in the years ahead and they have lots of opportunity to research them and develop their own position. They have other parents to talk to who are going through the same thing. They have neighbours.

In the end, we are only visitors, and we go home to Francesville where none of us really know what the hell is going on.

This is my fantasy:

One day, Erik, Frances and I will be wandering the local narrow streets of Francesville, and we'll find a road we have never gone down before. We'll turn the corner and see another little house nestled behind a little garden, looking peaceful and well-tended. We'll knock on the door, and someone will answer it--another family. And not newcomers, but a family that has lived here for years, one with a child slightly older than Frances. A family who can tell us where we're going--who knows something of the laws and customs of our new home.

I imagine myself and this other mother laughing and talking far into the night, sharing the details of our perplexing lives and nodding in agreement and sympathy--the clueless doctors, the multiple genetics and specialist appointments, the frustration of never having a diagnosis, the guesswork involved with purchasing clothing, the little things like stepstools and modified light-switches that make life easier. I imagine watching Frances play with their child, a true peer. I imagine trading addresses and phone numbers; I imagine finally knowing one other person who truly knows what I'm talking about.

I love all my mom-friends dearly. So much of our experience is the same--the sleepless nights, the feeding issues, in-law frustrations, changes in roles and expectations; and those similarities have truly kept me sane. But we still live in different countries, and visiting is nice, but it's not enough.

Is this selfish of me?

After nearly two years, I still have not found someone (and not for lack of trying) who can say with me: "I do not know how my child will grow up; s/he may be 3' tall, or 4'6", and no one can tell me. I cannot prepare for her life or think about the adaptive aids she may need because the best medical experts in my country have no idea what is going on. Only guesses."

I just want one neighbour. One person who has lived in this country before me, who can show me what comes next. Who can give me a roadmap and tell me where the parliament building is and whether we export wheat or widgets. Just one--one neighbour, one friend, one peer. One person who has explored this country before me.

Somewhere out there there must be someone, and I will keep looking until I find them. In the meantime, I love Francesville for all its beauty, charm and surprises. I don't want to leave. It's just a little isolated, sometimes.