Not Ever

My sweet Addie,

I’m sorry I didn’t write to you last week. I was caught up in my thoughts and feelings,  something I honestly don’t like to admit, but it happens. People are always talking about self-care and reducing stress, and I know they mean well, but when you’re living this life every single day, I don’t know how anyone can simply think, "oh well, everything is going to work out.” There is a harsh reality here. We put a lot of hope in that statement, but sometimes it feels reckless to rely on hope alone. Hope isn’t a plan. Hope doesn’t guarantee safety or support. And that scares me...yet sometimes it feels like all we have.

Because the truth is, I live with a fear so deep it’s hard to describe. It’s been with me since the day we first heard your diagnosis, and it has only grown as the years have passed. The fear of your future, the fear of who will care for you when I no longer can.

There has been so much talk about autism lately - in the news, on social media, everywhere...and still, nothing really changes for us. Awareness doesn’t magically make insurance easier. It doesn’t make services appear. It doesn’t smooth the battles we fight for you, even now, with you at 14. I ask myself constantly, Who will fight for you when Dad and I cannot? Your sister and brother would, of course they would they love you endlessly. One team, one dream, but why is it this hard? Why is it this heavy? And what happens to people who don’t have siblings who can step in? These questions keep me up at night.

Two weeks ago, we went to our beloved 3 Bluebirds Farm annual fundraiser, like we have for the past ten years. Big brother Gabe even performed a routine with some classmates this year which melted our hearts, but I digress. I promise you we will never miss it, because the need is so great and bigger than most people will ever see. We need places like 3 Bluebirds Farm to survive. We need more people to follow in their footsteps, because right now there simply aren’t enough options, not for you and not for so many others. There is a whole community of families and individuals whose stories never get the attention they deserve and are just looked at as statistics. Sounds harsh, but it’s the truth. Autistic individuals can be part of society and live meaningful lives if given the support.

You’ve been sick for six months now, and our new normal has become managing symptoms, meeting new specialists, and holding on to any smile we can get from you, as just that simple display of joy on your face seems to breathe new life into the room. You’re almost 15, and we knew long before any diagnosis that you were uniquely different. You were inevitably recommended for services at 16 months and we have been advocating for you - for every service, every appointment, every resource, every moment of understanding & acceptance since...through multiple states at that. Maybe all that fighting prepared us for these past months, or maybe nothing could have. I don’t know.

What I do know is this, I love you with every part of me. I will always fight for you, even on the days when I’m scared, even on the days when my heart feels too heavy. And we will keep working, planning, and hoping for a future where you are cared for, supported, and surrounded by love long after we’re gone.

You are not alone. And you will not be left alone.

Not ever. I promise you that.

Love always,

Mom