Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number
Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing.
Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”.
There, it’s out there now.
I have had a vast number of people remark about how the motherhood journey is a common experience (and if you’re one of them, I am SO not calling you out in particular) and the more I hear it from Moms – typical everyday Moms – the more isolated it has been making me feel.
Partially this is my fault as I tend to gloss over the sheer logistics of tending to Obi’s needs. I am also guilty of attempting to adopt a normalcy to her condition which then leaves people without a sense of how far from normal her first year has been and what that has meant to our family. Even as I’m typing I’m cringing at my own words – really, what is NORMAL anyway?
But, truth be told, as someone who parented a typical child before Obi came into our lives, having her is just not the same as a typical kid. The “hopes and fears”, the “good days and bad”, the “just trying to get by sleep deprived” and the “constant worry” aren’t the same.
I hope my child will speak. I fear my child won’t walk, or eat solids that aren’t pureed or every be invited to a birthday party not thrown by someone who is like family. On good days I have been able to get food into her, I have not missed an appointment, followup, received bad news or thought too much about her future. On good days we learn we don’t have to come back to a particular specialist for a year – unless we see any of a set of scary symptoms. On bad days we learn she isn’t seeing well, had flunked her hearing test again, her calcium levels are rising. On bad days we get referred to rule out potentially debilitating seizures, get the run around for therapy funding, realize we have no idea what the future holds for her. On bad days people ask what’s wrong with her, if she’s going to be ok, if she’s ‘healthy’, if she’ll ever walk or talk and I have to answer we hope so.
In 12 months she’s slept through the night 10 times. The three months before that, she didn’t wake up. The rest of the days she got between 3-5 hours of sleep between 8 pm and 8 am. We take turns.
With my typical child I worried about eating, sleep, development, if he should have screen time, if he was being spoiled, was he likeable. Now I worry about hearing, sight, mineral levels, blood pressure, muscle tone, tippy toes, W sitting. I worry that she will never eat a cheerio, that she will be bullied, abused, invisible. I worry that I won’t live long enough to take care of her as long as she needs care, that she’ll wind up in poverty somewhere, that, once her brother has a family of his own, she’ll be alone.
I just worry.
I manage her schedule of what will soon be 12 doctors, specialists and therapists. Some she sees by-weekly, others quarterly, others yearly. I keep track of research, minute shifts in development, growth, eating habits, sleep habits, tests, procedures and behaviour that might indicate a need to see one or all of the 12 professionals that tend to her care.
I find foods to try, toys recommended by therapists, routines that might help promote sleep, cups she might hold, groups that will welcome her.
I work. I parent another child. I cook. I think about cleaning…
I love her without question and I do all of this and would do 10 times more…if required.
I’m not amazing, or a super hero or anything like that. I’m just doing what I need to do. Or rather, what she needs me to do.
I’m a mom. And I know we mom’s are a time a dozen.
And it IS true that, like others moms, I have hopes and fears and dreams for the future.
But it’s just not the same.
It’s just not.