Prior to having Lexi, we had the future all planned out. You could ask us where we would be in 5, 10, even 15 years, and while we may not know the geographical location, we had a plan for where we would be in life.
Have baby number 1 after qualifiers, finish grad school, get pregnant again so that Jess was out of the first trimester but not yet huge when she defends her thesis in 2018. Move for her post-doc, hopefully to one of a handful of schools. Baby 1 would start preschool where ever we ended up for the postdoc. Hopefully it would be a 3 year postdoc. Aim for a tenure track position at a specific college close enough to the farm that we can visit on the weekends. Homeschool both kids starting in kindergarten.
Now, all of that is in question. The most common refrain from her neurologists is “we don’t know her trajectory, but it doesn’t look good. She’s likely to have significant delays.” Last week, her new epileptologist added “I can’t predict what she will and won’t do, no one can, but she is unlikely to be indistinguishable from her peers at 10 years old, for example.” Hearing that is such a blow, but the reality is that those are just words. Her diagnoses are just that– words. You have to learn to look past the words they use to describe her medically, to Lexi. And yet…
A year ago, I could picture our future clearly… maybe not all of the details, but a general trajectory. Now I can’t, and for me that feels like living blind. Every week is a mystery, every month a question. Will she meet her milestones this month? How many doctors will panic because she didn’t achieve a milestone, before they would be concerned that a “normal” child had missed it. (We actually had a neurologist freak out that she wasn’t sitting up unassisted at not quite 6 months old… even though the range for that is 4-7 months.) We’ve said we’re going to put off having more kids until we know more about Lexi’s development, but the truth is, we could be spending the next 20 years in suspense, waiting to know what she will and will not do, and when. We can’t put our lives on hold until we know more. We can’t delay our futures to wait until we can predict hers.
The lesson here, if there is one (and maybe there isn’t), is to take each day on its own merits. Enjoy today, and let tomorrow worry about itself. Treasure each moment, each victory, no matter how small. There have already been delays, and I’m sure there will be more, but it’s important to remember that even “normal” children follow their own paths, their own trajectories. There is no crystal ball to tell you when your child is going to do anything, ever… and with Lexi, even less so. I’ve never been good at patience, at tolerating the unknown, but now is as good a time as any to learn.