As much as I’m an open book when it comes to being an Autism Mom, I’m sometimes hesitant to share the really bad parts. Whether it be a bad day of hers or even a day where I’m just not as emotionally strong. I’m hesitant for several reasons. The main reason is I like to focus on the good. Keeping a positive attitude is the key to living this crazy life. But I also worry that I may sound like I’m looking for people to feel sorry for me and that’s so far from why I share my journey. But if this blog is to truly reflect the journey then maybe it’s important to share the tough moments.
So here it is…
You know that grieving process people go through when they lose a loved one? You go through the same process when having a child with significant needs. Why? Because it’s natural to grieve the loss of what you hoped you would have. Every parent hopes for this perfectly healthy child. The child that you would watch grow through all the “normal” stages of life. When you find out your child will be on a different path because of special needs, that hope dies. Doesn’t mean these parents love their child any less but it still stings.
Like the grieving process when you lose a loved one, it’s different for everyone, the stages don’t go in any order and certain stages will hit you like a ton of bricks even years later.
I can’t pin point why, but I’ve had moments recently where I’ve been teetering between angry and depressed. I said it today to someone, “My daughter has autism, this is my life and it’s daunting sometimes to think this is never going away.”
I can not predict the future but the likelihood of her needing to be completely dependent on us for the rest of our lives is high. Swallow that one. I may never be able to spend a weekend away without wondering who will take care of Courtney. We likely will be juggling this crazy therapy schedule for many years to come. Joe may never be able to walk her down the aisle and Alyssa may never have a niece or nephew on our side of the family. Yep, it’s a grieving process.
Most days I don’t let myself fret about that far in the future because honestly, there’s no way to know for sure and time is too precious to let it bog me down. Heck, I can’t even predict Alyssa’s future. But then there are days where these thoughts smack me in the face. It’s the ugly side of autism. I let these moments hit me, take my time to grieve and then remember how far we have come in this amazing journey.
Before I get messages and phone calls from my parents, I am fine. I am happy and life is good. Just sometimes, autism sucks and It’s healthy for me to share that side too.