Lots of people have asked for an update on Vivi since her surgery at the end of August.
In short, she is doing fantastic. According to her doctor, she could be the poster child for handling this particular major surgery and learning how to take care of herself.
Her last follow-up appointment was yesterday. They’ll check her again in a few months just to make sure everything is still good, but she is free for now. Free of appointments, free of tubes, and free to completely take over her own care.
This is so huge. Something we forget about kids with special needs is that they have to work much harder to get to the same point that other kids start at. And sometimes the journey to get to that point is really challenging.
We tend to post pictures on social media of things going well, of the strides we’re making.
We don’t post the pictures of the tears. We don’t show the bad days.
And even if we wanted to, there is no way to capture the image of a parent’s heart breaking when your child looks you in the eye, with tears rolling down her cheeks, and tells you she doesn’t want to be brave anymore.
Vivi may not have wanted to be brave, but words can’t possibly describe how brave she has been.
We know from her history, the two years she spent without us, that she was already brave.
We know from her first crazy year with us, all the time spent trying to get to the bottom of her medical issues, that she is consistently brave.
She lives brave every day.
Small tasks that others don’t even think about doing she has to work hard to do. But she does them. Sometimes she’s sad about having to do them, about not being “normal,” but she does them.
We work to find her normal routine. Because that’s what matters.
Parenting a kid with special medical needs can be tough. Sometimes the doctor appointments, the tests, the check-ups, the meds, the mysteries, the hypotheses, the trial and error, the search for answers can be overwhelming and seem never-ending.
All of that is okay in that we signed up for it. We knew it was happening. We said “yes” no matter what. And we meant it.
That doesn’t change the level of difficulty though, or erase the tears on the hardest of days.
But sometimes there is a break in the clouds. And you get to be free for just a bit. And it doesn’t mean that you won’t one day be back in the thick of the issues. But it means that, for now, your child just gets to live life like any other kid.
Today, she got her break.