I was honored to be able to present at the 2014 TAER conference again this year. This is the second time that I was able to speak.
Can you believe it?! Twice! What?! Are they crazy?! Did they hear my speech the first time? Do they remember the boxes of tissues that we passed around the room last time? Apparently I forgot about that part too because even I didn’t come prepared.
I’m a crier. I know. How can I still cry at a story that I’ve lived, written, and spoken about frequently?
Some things will never cease to be just a memory. I will relive the story of Oli’s birth and her early years every single time that I speak about it, for the rest of my life.
Yes. It has gotten easier. The pain is a little bit less with the passage of time. It’s easier now because I know that her story, my story, has a happy ending.
I know that I am able to relive those early moments, the ones that are burned in my brain, live them, feel them, talk about them, write about them, cry over them, and then go home and pick up my girl and realize how far we’ve come.
Writing about it and talking about it has actually become my therapy. My outlet for grieving and healing.
This will surprise the people who have read most of my story or seen me speak, but I used to never talk about how I felt about any of this. Never.
Fine was absolutely my favorite word and I was FINE! Don’t you know how fine I am?
I was fine, she was fine, we were FINE, people!! I would say this as my life was literally falling apart around me.
I would say it as the tears stained my pillowcase at night…
I would say it as my heart felt like it was shattering into a million pieces every time a new diagnosis washed over my brain and flooded the banks of my emotions…
I was fine.
I would say it to everyone.
Anytime a friend or family member would meet my gaze with worry in their eyes and a soft hand on my shoulder and ask “How are you?” I would respond with an outer persona that was not me. I would speak the word “fine” and my soul would scream out at me to reveal the truth.
I. Was. Not. Fine.
But I didn’t know how to tell anyone anything else. I didn’t know how to tell people that I was struggling because I thought that it would mean that I wasn’t a good mom.
I thought that because my life and my emotions didn’t follow the people’s stories that I’d read about online, you know, the ones that are like mine now, I thought that it meant that I was a terrible, awful mom.
Let’s be honest here.
My blog and my facebook page now? Would have made me feel like total crap back then.
I would read stories like mine with a disgusted feeling in my stomach because I didn’t feel any of the things that I feel now. The old me would have been so jealous and so envious and so….blah…about the new me. I was so caught up in my negativity and my own feelings of self pity that it would have killed me to read about a mom who just accepted her life after the birth of a special needs child.
Come on. I mean I was no where near acceptance. We weren’t in the same zip code. We weren’t even on the same continent.
I did NOT accept that I had a child with a disability.
I did NOT accept that my life had taken a turn that I wasn’t expecting.
I did NOT accept that I couldn’t fix it, change it, run from it, hide from it, bury it… live with it.
I didn’t accept that this was something that I was going to have to learn to live with.
I did not want to have to accept the fact that I had to accept the fact that I had given birth to a daughter with a disability. A blind child. A child with multiple impairments.
No. That was totally unacceptable.
So I would read about moms who shared their beautiful journeys to acceptance, except I never saw their journey. I only saw their destination and that destination was acceptance. I didn’t understand that they all had a story to tell about getting there.
I wanted someone to show me the precise steps that they took to just be okay with it all.
To be more than okay with it all.
To be happy.
What did they do?! Why won’t they just show me?! Can’t they just come over to my house, take my hand and walk me through it?! Why not? Why were they doing this to me? Didn’t they know that I was dying here?!!!
Of course they did, but now I know that no one takes a specific path. There is no right way to do this deal.
They couldn’t just walk me through it. I had to find my own way. I had to create my own path.
And as much as I felt like I was doing it all wrong back then, now I know that there is no wrong way either.
I wish that I had known that while reading the stories of acceptance and hope that other parents put out there, that they were actually planting little seeds in my brain. They were planting the seeds that would eventually grow into flowers along my path and allow me to find my way home.
I think that this is the other reason that compels me to share my story today. My heart physically hurts every time that I see another mom struggling. I see them and I feel their pain just like it was my own.
I wish that I had the magic to bottle up the way that I feel today. I wish that I could just give it to those moms.
But this is part of the beauty. It really is a beautiful journey even when it’s horrible and ugly and painful and sad.
One day, all of us are able to stand at the doors of our destination, look back on our journey, and then look another struggling mother in the eyes and say “I never said it was going to be easy; I only said it would be worth it.” (Quote by Mae West)