Sunday, September 29, 2013

When Nightmares are Reality

I had a dream that, at first, was so real, I nearly believed it to be true. We were at the beach. I was healthy, playing with the kids, running around, laughing, free of pain and everyone was smiling. My mind then whispered, "This is a lie. You need to wake up." In the dream, a tidal wave filled with pain washed over me. It tore away the happy moment, the laughter, and the smiles. Then everything went black, cold, and I was in gut wrenching pain.

I woke up drenched in sweat and found that the tidal wave was real. I was in pain, a lot of pain. And that pain was washing over me like a tsunami.

That dream is my reality.

Dreams are, very rarely, reality. Unless they're nightmares.

I keep hoping and praying that this is all in my head.  That this is just a nightmare. That this is psychosomatic, that this really isn't happening. 

But I know it is real. 

It is happening.

I am not making this up in my head.

I'm certainly not dreaming it. 

Illness of any sort will have an effect on any person and any family. In an autism family, like mine, I think it's harder. We already feel like we've been running a marathon for years that is never ending. The finish line, as soon as it's in view, recedes back into the distance (thanks, regression, you're an asshole). Throw some illness in there and all sorts of things pop up. Like Morgan perservating on the idea of me dying, and him scratching his head (new stim) until it bleeds. Then Bay had a potty accident at school for the first time the other day and who has been exceptionally sensitive lately. 

They are both terrified and I can't blame them. Their mom isn't their usual mom right now.

My biggest fear is not being able to take care of my children.

When we noticed autism in Morgan, one of the first things I remembered thinking is, "I can't die. I can never die because no one will be able to take care of him the way I do." I find this sentiment to be true for a lot of special needs families. I try not to think about it, but it's always there. 

That dream was easy to interpret for me. This pain washes over me in waves, stealing moments that should be, by all rights, mine to enjoy. It knocks me down, tears everything apart, and even knocks me out. It's drowning me. 

This is scary. 

I am trying to be so damn brave in front of the kids. To not break down. But that is incredibly hard when I can't escape my own body.

*Editor's note... I promise sometime soon I will get back to talking about autism. I swear. It's just that right now, this is what is going on in our life as a family and it's the vortex that sucks everything in. This blog is also my place to vent. I won't make apologies for that. 


  1. Don't make apologies. This effects your family as much as autism does. Feel bettter soon.

  2. Sending many hugs. I hope that you are able to awaken from this nightmare soon. And what TwoMoms said...don't ever make apologies!

  3. You are amazing that you can write so eloquently in the midst of your pain. I feel this too - every illness, everything that affects our health, is magnified by how it affects our kids, and the worry that I won't be there to help him through life is ever-present. And, this post IS about autism and special needs parenting, it is SO much. Thinking of you and wishing you a quick path out of the pain and back to the happy.

    1. I'd actually thought my writing was going downhill, lol. I write after I've taken my painkillers. That brings my pain level from 10+ down to about a 7 or so. And... writing is somewhat cathartic for me. There are, currently, about 50 posts sitting in my account that will likely never see the light of day. There are another 20 or so which are in my Word docs.

      And I can see where this IS about autism because our family IS autism.

  4. I cannot begin to imagine how difficult this is for you and your family. Sending good thoughts and adding my prayers for healing and wholeness.

  5. Jessi, I've walked your road with endo. Nothing is as painful as that evil intruder! It is debilitating and leaves scars and permanent damage for ever. It took everything female from me! To this day, I still live with repercussions in permanent damage from it. Just 2 years ago, I had to have parts of my colon removed b/c of it...this after a complete removal of all parts over 10 yrs ago! I am so sorry you are now enduring this along with Morgan, Bailey, & your husband! My heart & thoughts are with you daily. Praying this goes well & you are better soon; that somehow Morgan finds a way to hang on; Bailey too! My heart hurts for them & you. Thank you for sharing this with us! We love you & no, never apologize!

  6. I am so sorry, I just realized I got Bay's name SO wrong! :(

  7. Never apologize for your feelings or writing what is in your heart. Hugs and prayers for a healthier, happier you!

  8. So eloquent, and so awful at the same moment Jessi. I have that same overwhelming fear that is constantly in my mind. I can never die. No one will love or care or advocate for Drew and James the way that I do. It is my ultimate worry and fear that never leaves my mind. Hugs to you. I really hope this journey with endo ends very very soon and your boys will see that it was just a chunk of time in theirs and your life. But how awful it is in this moment. I am so sorry. Hugs.

  9. love you and this post really hit home for me too. and this blog is your place, your safe space to talk about anything. your fears are the fears of all parents of special needs children. we have to worry more about who will care for our kids, etc. sending huge hugs