If not me, then who

03.26.14

My very good girlfriend, Jess, agreed to write a little something for the blog. I think I want to ask girlfriends to do this more often. Something about reading from the perspective of an autism mom, brings so much comfort and knowledge to my own perspective. Sometimes perspectives may be different, but I think this can be a good thing. And sometimes the perspectives match up, which works just as well.

 

When I asked Jess to write something up, I didn’t give any topic or parameters. I simply asked her to write what her heart desires and knew without question it would be fantastic! And it is!! Enjoy….

 

 


The moment my daughter, Evie, was diagnosed with Autism, I became a fighter.

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I’ll never forget that afternoon in late August, and the way the words “Autism Spectrum Disorder” seemed to pierce my heart as they slipped from that doctor’s lips. In an instant, our whole life had changed, and my role as her Mother became more complex and challenging than I ever imagined it could be. No longer was I “just” a mother– responsible for pbj’s, and story time, and bandaging scraped knees–now I was responsible for guiding her life in an impossibly real way. Who would get this sweet girl in front of the right doctors, if not me? Who would fight tooth and nail for the services she deserved, if not me? Who would find the best treatment, the best therapists, deliver the biggest applause at her slightest accomplishment?

 

That became clear to me in an instant.

I would.

 

At times, advocating for Evie has felt like pounding my fists against concrete walls. I fall into bed at night with bruised knuckles and bleeding skin, shoulders throbbing from the weight of my effort. At times, advocating for Evie has meant telling the SLP at school her assessment of Evie’s language skills is inaccurate, watching her face fall slightly at the accusation, and feeling my pulse quicken as my heart cheers on my lips; “open your mouth, Jess, and speak.”

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Advocating for Evie has meant doing my research. Asking for a second opinion, learning the lingo, sitting in on their meetings, studying their programs, encouraging their efforts, and pushing, always pushing, for more.

 

More than anything, advocating for Evie has meant following my heart. Trusting my gut when it tells me that she needs something different than what she is receiving. Trusting my gut when it tells me to take a second look. Trusting my gut when it tells me to quiet all the voices around me telling me what I should know about Autism, what I should believe about what she is capable of…quieting the voice that fills me with fear and uncertainty, and trusting my heart when it tells me to open up my eyes, and simply see.

 

Recently, trusting my gut has led me away from one therapy provider and towards another. I sat with the decision for months, pounding my fists against those concrete walls, and praying for clarity, and peace, and reassurance. At times, I have wondered if I expect too much of the people who work with my daughter; perhaps I need to take a step back, relax, and quiet the voice inside myself that tells me to keep pushing.

 

But then I sit next to her as she eats her lunch and watch the way her eyes sparkle back at mine when I speak to her, and I know that I am meant to fight for this girl. Who will mold this little life into one of promise, if not me? Who will speak for Evie, when she cannot speak for herself? Who will make the hard decisions, the big decisions, that ultimately add up to a lifetime of loving her?

 

The answer has always been clear.

I will.

 

I still don’t know if I am making the right decision. Leaving one company and heading to another will not be easy on any of us. We have fallen in love with our therapists, and saying goodbye is painful, and heartbreaking, and hard. I don’t have all the answers, and I don’t know where this road will lead, but I do know that I am listening to that voice that tells me to keep fighting for what I know is possible for my girl. I do know that I am following my heart, and trusting the person Evie’s autism has forced me to become.

 

It hasn’t been easy, and my shoulders still throb from the weight of it all when I lay my tired body down at night. But Autism has molded me into so much more than what I was before. No longer do I have to question whether I am strong enough, or brave enough, or wise enough to guide this precious little girl into the life that is waiting for her.  I don’t have to be the strongest, or the bravest, or the wisest mother in order to do it right. At the end of the day, I just have to follow my heart. And, at the end of the day, I close my eyes and see a future for my Evie as bright as her sparkling ice-water eyes.

 

Should I should take a step back, relax, and quiet my heart when it tells me to keep pushing?

 

Never.

 

 


Jess shares more of her words of wisdom on her family blog. Read more here!

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comments

  1. Jess is a beautiful writer. I love this. Mamas to kids on the spectrum learn to be fighters! So grateful I have examples to keep me fighting. All of your examples keep me going!

  2. This was beautiful. I loved getting a chance to meet you, Jess, in February. I love hearing the stories of moms who do whatever it takes with a heart full of love for their children. The stories touch my heart and are always inspiring.

  3. Always real, and so incredibly inspiring Jess! You are right on, and doing just the right the things, I believe. You can never go wrong following your heart, I truly believe that. Usually those harder roads lead you to a happier place in the end.
    So much love to you & that blue eyed gorgeous girl!!!

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