Only One?

I have so much that I want to write on Zoe's blog but I just never find the time. So I am going to attempt two posts today. The first is much more personal but is something I have been thinking about for a while and came to light this past weekend. The second is just a fun post that is me bragging about my wonderful daughter.

So here goes.

The Big Question

Many people have asked this, I am sure even more have thought it, "are you going to have a second child soon?" We were at a work conference over the weekend in Boston and I saw many people I knew from university as well as my past job in Philadelphia. And so the big question was phrased in different ways. Here are some of the variety:
"Are you going to have more children?"
"When are you going to have more children?"
"Are you worried if you have another child it will turn out like Zoe?"
(My answer to this should be- by "like Zoe" I can only assume you mean wonderful and amazing?)
"Will you get amnio with your next child so you can make an informed choice?"
(And what is my "informed choice" whether to start an RESP or an RDSP?)
"Did you have amnio with Zoe? Did it pick up what she has? Will you know with the next one so you can be prepared?"
(How does one prepare for a wonderful child like Zoe? Should I stock up now on really bad movies to watch for the 16 hours a day it took to feed her which required me to sit in a rigid position and not make too much noise so she can nurse?)

Anyway, it gets me thinking.
About a lot of things.
People's perceptions of what a family should look like.
People's reasons for having children.
And overall people's understanding of what life with Zoe is like.

It used to hurt my feelings when people would ask these questions. How can you ask that? I felt like it would be as insensitive as asking at a funeral of your partner, "So, are you going to get remarried now?" How could we even consider having another child when clearly our world is still falling to pieces?

Now....now that life is more settled the question does not upset me. I realize people ask for a variety of reasons. And that people do not understand what life with Zoe is like just as I will never understand what anyone else's experience is. We have Zoe. They have their own families. Everyone is different. So how can you understand what it is like. Sometimes I attempt to tell people but I feel it undermines who Zoe truly is if I only focus on the difficult tasks. Sometimes it seems that it is easier to describe the hardships involved in parenting rather than the joys. The fact that Zoe is like taking care of a newborn- completely dependent on us for every single thing. Except more work than a newborn because we also have to provide developmentally appropriate opportunities to develop her cognitive abilities which seem to be her strength area right now (more on this in my second post). But if I only focus on what makes life more difficult, I would take the focus off what makes my life so amazing right now. And Zoe is an amazing child. She is so full of life. She laughs at the most random things. She notices things that other children are too busy running around to notice. And so we laugh with her. She is very clever in communicating in creative ways- you have to be when you can't use your words and you have so much to say. And so I can see why people would want me to have another wonderful child like Zoe (although I doubt this is what they are asking, I think for the most part people are wondering when we are going to have a "typical" kid. Not that they are saying there is anything wrong with Zoe, but people just assume that when you get pregnant you are going to have a healthy child. Who doesn't.....well we didn't but then again we aren't typical parents.)

And so here is my answer to all of those who are wondering:

No- we are not having another child any time soon.

Why? We have to look at what is best for our family and having another child is not what we believe to be best at this point. Zoe requires extra care that a typical parent can not even begin to imagine (our friend mentioned that her fist three typical children were less work (even having three young ones running around at the same time) than her one child who has 1P36). And so, having Zoe takes more time and energy than a typical kid. And so the fact is, we do not have any extra time or energy kicking around at this point. We do not want to compromise Zoe's growth by taking away from her care. (This is something people may not understand. As long you are an ok parent, your child will learn to eat, walk, play, etc on their own. With a 1P36 child, they need to be shown every single thing. Zoe did not even reach out to bat at toys until after 10 months of us showing her hand over hand over and over again. And so if we do not have the time to teach Zoe these basic life skills (walking, self feeding, toileting, etc) she will never learn them on her own.) And we do not want to compromise the sibling's own childhood either. The fact is we only have so much time and energy and these days it takes all we have to keep us going.

As parents, we have learned that it is no longer about what we want. Instead, it is about what is best for Zoe. What is best for our family. I love that Gavin sees this too and is willing to do whatever is best for all of us.

Does this mean I think anyone with a disabled child should not have more kids? Absolutely not. We see other 1P36 parents having more kids and that is great because it works for their families. But our family (like everyone else's) is unique. I have a chronic disease that until recently was well managed. I had surgery in 2005 and since then I have been managing my symptoms with acupuncture and taking care of myself. The taking care of myself part has fallen to the side in the last year. It is very challenging to take care of myself when I am in a hospital room with Zoe who is having a reaction to medication and is awake for four days straight in pain and agitated. How do I say, "Sucks to be you" and go home? And so I have a lot of pain symptoms right now. I finally agreed to start a medication recently in order to cope with the pain. I do not like taking meds (does this mean no one should take meds, NO! but I felt it was the best choice for me at the time). However, it got to the point where I could not even lift Zoe when I was having a bad day. With a child who can not move herself, not lifting her is not really an option. Add to this Gavin's own health concerns and of course Zoe's needs and the only solution (for now) is that we need to get on a steady ground before even considering having a second child.This doesn't mean not ever- but not now.

And so I will end my rambling here. Thank you for such interest in my reproductive intentions.