Losing Myself to Autism

207_32467706100_5179_nOnce upon a time I had a flourishing garden.  My tomatoes fell to blight but I tenderly rescued each one of them and saw them through to ripening in the sun on my deck and they were magnificent and juicy.  I had many house plants that grew and grew and flourished under the care of my green thumb.

Once upon a time I cooked magnificent meals for family and friends.  I would buzz about the kitchen for HOURS.  Every Friday I would cook my husband a gourmet meal of fresh seafood or tender steak.  It was fancy night and what I came up with was always different and delightful.  I was the woman to come to if you were hungry and in need of a fresh bowl of home-made soup.

Once upon a time I sang and I sang and I sang and I wrote songs.  My husband and I made beautiful music together.

Once upon a time I had a health blog where I would research healthy foods for HOURS.  This was before any of the other health blogs.  I actually found out for myself the science behind BPA’s and why they’re harmful to us.  I was so healthy and so skinny and extremely happy.

168_10665986100_8415_nOnce upon a time I carried an SLR camera everywhere I went and took (what I thought was gorgeous) photos of my family.  I even started getting paying customers because of it.

Then a bomb went off.  My heart shattered and with it, everything that I felt important.  Enjoying life mode turned into survival mode.  I lived and breathed and ate and slept and became autism.

I wasn’t a whole woman anymore.  I was the banshee whisperer.  I was the taxi driver.  I was the coordinator.  I was a gigantic vat of guilt.  I was a punching bag.  I was the police rescuing my baby from being beaten up.  I was a slew of anxiety attacks and tears and fear.

My garden only yielded what perrenials I had planted from the golden years before.  My household plants withered and died, only a few survived.  I stopped singing so much.  I stopped taking care of my body so well.  My SLR was left on a shelf and is grey with dust.  I didn’t have space for any of my passions.

I didn’t have space for friends or family.  I didn’t have space to help anyone with anything.  I didn’t have space to take on anything other than what was within my survival mode. (Really…autism parents are justified in that.  They need to take care of their own shit that’s going on.  Have a lot of patience for autism parents.  And add in there parents of any kid with any sort of high need be it illness or developmental)

Luckily we came out the other end of it.  Some mothers have to live this forever but Silas was able to come through the other side and my life is now FULL of space.  More space than anyone I know.

What’s hard is that my mind is still in survival mode.  I do recognize that there is space for things and I’ve slowly allowed for that.  I have come out of the blur a bit.  I’ve replaced old plants with new…killed a few again but as of late, they’re flourishing.  I have slowly built back my garden and this year I finally have great excitement about growing and nurturing my plants.  I cannot WAIT to start.  I look at my front garden every time I drive in the driveway.  My spring bulbs are growing fast and it is bringing me much joy.

But there’s still a lot of space to fill that I haven’t been brave enough to fill yet.  It feels like I am reserving self just in case.  Life hasn’t been this stress free since the day before I realized I was pregnant with Isaac (things took a turn for us then…holy cow did they ever).  I’m almost protecting the space I have and sometimes even full out intentionally NOT filling it yet…it’s a weird feeling to have this space.

After 4 years I’m finally seeing bits of Leah again and it’s feeling good.  I didn’t get pregnant for a do-over but I think back to the times when Silas was a baby and I was at my prime.  Those were some of the happiest days of my life.  There’s space for that again and I just can’t wait to have a little baby in all that space.  Someone to sing to who won’t cover their ears.  A little naked love to play with the hose in the sun in the back yard.  Someone to inspire me to dust off my SLR so they don’t just have square instagram photos of themselves as babies.  I just cannot wait and I cannot wait to find out who the 30 year old version of Leah is.  With all this space.  Because Leah was gone for a long time.




  1. oh, mama, I hear you. do I ever hear you. many days I feel I am still knee-deep in that space, sometimes more, sometimes less. I celebrate every day, but am also worn beyond capacity every day. I hear ya on the survival mode. (I will survive!) xo
    LauraLuyt recently posted..balance.My Profile

  2. I’m not a parent of an autistic child, but having a very spirited child feels the same way (obviously in a different way). Excited for you and what baby will bring!

    1. Some spirited kids are harder than having a kid with autism! I think the hard thing with having a diagnosis like we had was not knowing if he will be ok. He was diagnosed non verbal so the dr didn’t expect him to talk. It’s tough.
      The Informal Matriarch recently posted..ConclusionsMy Profile

  3. I totally get this post. I feel like I lost myself to Down syndrome. I told my Mom once that I needed to get my life back, because even my extra curricular activities had become about Ds. While it’s still a part of life (obviously!) it’s just a part. I’m glad that you are starting to feel like Leah again 🙂
    Leanna recently posted..hitting resetMy Profile

Leave a comment

Your email address will not be published. Required fields are marked *

CommentLuv badge