She stopped hitting the traditional milestones a long time ago. There were choices to be made; different paths we could take in order to proceed with her diagnosis and therapy options. What was more important… who Lila is vs what Lila can do, what Lila enjoys vs what is socially acceptable, and the way we were used to living vs what Lila is comfortable with. The answers were easy for us.
I used to think success meant a lot of different things: living independently, having a great job/career, having plenty of money, two kids, a nice house and car, etc. Lila has changed the way I think about many things, and the definition of success is just one of them. She has been (and will continue to be) my greatest teacher.
For Lila – I just want her to be happy, to be a good person – and all she really has to do is just BE (herself). Will she be able to live independently, talk, drive, have a job, etc? Maybe…. maybe not. We have no way of knowing. If not – it doesn’t matter – even if she lives with us forever, she is a raving success in my eyes. She works so hard every single day just to be “OK” in this world. Not many can see just how far she has come already. We will champion her every step of the way to be the absolute best Lila she can be – we always have, and we always will.
But it is of the absolute utmost importance to me that she knows – without a shadow of a doubt – that she is (and always has been) more than enough, that she is a kind of brilliant that society may or may not ever fully appreciate, and that she is loved no matter what skills she does or does not acquire. Her worth is not determined by her accomplishments – she will forever have our unconditional love, acceptance, and respect… just by being her beautifully perfect self.