What's keeping me awake at night.

Progress in my uterus continues apace, as I remain exceedingly grateful for this relatively uneventful and comfortable pregnancy. Above the neck, however, things are anything but tranquil.

I've been spending a lot of time wondering how in the world we're going to make this work. I'm sure we can figure out the child-care situation and the work-family balance thing, although it will mean fewer impulsive gear purchases, exotic vacations, and nice restaurant dinners for a while. I'm also sure - or at least reasonably confident - that we will find ways to maintain our beloved athletic pursuits, spend time with our kid-less friends, and even relax on the couch from time to time. Perhaps I'm delusional, but this part of adapting to Life With Baby doesn't worry me so much.

But trying to figure out how we're going to manage all of this with only one parent who drives? And wondering how I'm going to avoid hurting my kid due to my vision loss (given how frequently I injure myself, however inconsequentially)? That has me scared shitless.

My hearing isn't troubling me. The CI has brought me almost to a normal level of hearing, and between that and the ready availability of lighted and vibrating alert systems, I don't expect my hearing loss to pose much of a hurdle in parenting. True, I can't understand much of what your average toddler says, but can anyone?

My vision, though? Hoo-boy. We're investigating nanny versus day-care options, and trying to weigh the dollar differences against the reality that only one of us will be able to do pick-ups and drop-offs in most circumstances. Not to mention transportation to doctor's appointments, play-dates, and kiddie activities. The bus system in Boulder is great, but it only goes so far, and I'm not entirely sure it's safe to take a newborn in a baby-bucket on the bus (anyone know?). Cabs will provide another option from time to time, but are available in these parts only on a slow, inconvenient, and expensive call-in basis (and, again, we have the safety issue).

And we haven't even begun to explore how we can protect the baby from any harm that might come to it because its mother walks into and trips over stuff a lot. I have no idea how I'm going to handle a stroller in crowded conditions, or how I'm going to walk home safely with the baby after dark, particularly given that I can only make it from the bike path to my front door by walking part-way in the street and doing my damndest not to trip over the branches, garbage cans, and other obstacles that frequently mar the sidewalk on our block. And how will I handle night-time feedings without having to turn on the lights to safely handle the baby, thereby waking the poor thing and probably destroying Steve's and my chances of getting a bit of sleep ourselves?

Part of me is sure we'll figure all of this out, through trial and (hopefully not too damaging) error. Part of me thinks I'm making too much of my disability's impact on parenting. But another part of me is filled with fear and uncertainty.

I guess I need to investigate resources for new parents with disabilities. I do hope that someone out there has not only dealt with the issues that worry me, but has memorialized their experiences and solutions in print or in cyberspace.

Comments

[Sarah banshee]

Sorry I've been out of touch for a bit but just to prove I do still keep an eye on the blog! I'm thrilled to hear your pregnancy is progressing so well and so comfortably, you really deserve it.

On the resources front, although it's UK focused thought you would still be interested in this resource for parents with sight disabilities http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_parents.hcsp

[Otavia]

Hiya--a cursory google search comes up with several informational sites and networks of parents with disabilities. There is stuff out there, and I'm sure you'll find it.

It never even occurred to me that you might be worried about this, because you and Steve are such smart, resourceful, and caring people that I, at least, have complete confidence that you'll manage and find great solutions to whatever difficulties you might encounter.

[Kelly]

Hello! I've been visiting your blog casually for some time now, but I've never had anything of any value to say. The issues you bring up here, though, are ones with which I have some familiarity (once upon a time I worked in the field of blindness skills development). I know that you're frightened about all this, and I also know that nothing some random stranger has to say will change that, but for what it's worth I bet you'll do just fine. One resource that I can recommend is http://lookingglass.org/parents/ppn.php, the TLG National Parent-to-Parent Network for Parents with Disabilities. I wish you the best of luck!

[Carolyn Elefant]

I'm also a casual reader, but excited to hear about this next chapter! I cannot offer any advice on resources for parenting with disabilities, but there are two other suggestions that might help. First, if you live in a neighborhood with other young families, see if you can hook up with another family to share an in home nanny. A DOJ attorney who lived across the street from me did this with her first child, and the little girl always looked like she was having a good time with the other little girl whom the nanny cared for. The shared arrangement gave each child a built in playmate and kept the costs down. Second, for play dates, have them at your place! When my daughters were young, I had my office space right in the center of the family room and of course, it was always a mess. I was always grateful to go to someone else's house. And since the other parents will stay for the play group, you'll have help watching the children and cleaning up and won't have to worry about endangering them. Finally, on the night time feedings, if you will be nursing, after the first couple of months, most moms barely open their eyes up anyway. (now if you have to measure formula into bottles and heat them up, that's another story...)

[Tina]

Hi, you could email Sense and ask for advice, I'm sure they will be able to give you some ideas, even though they are in the UK. http://www.sense.org.uk/
I'm profoundly deaf and almost went blind 2 years ago, it is scary. But I'm sure you will be fine and work it all out. Good luck.

[Shari]

Hi, I came across your blog via google search for other Usher Syndrome bloggers.
Congratulations on your pregnancy. I have Usher Syndrome Type 2 and I have two girls, ages 12 and 7. When the girls were toddlers, they caught on that mommy doesn't always see everything. They'll learn to move out of mommy's way.

Just take it one day at a time.

[brett]

Hi I am a blind person who lives in Denver. I found your blog by accident and thought maybe I could say something useful. First of all there are plenty of parents who are blind and do very well for themselves and there children. I encourage you to talk to as many blind parent organizations no matter what good or bad you have heard about them. The NFB for example has quite a few blind parents that attend meetings in all areas of the US. It might be helpful to join some blind or disabled email lists as well. People are usually open to questions and giving advice.
hope that helps
bb