Discrediting Those Who Fight For Progress

 

Just because Willow is making tons of progress doesn't mean we haven't fought hard as hell to get here. 

That's why it's hard to hear, "See? She just needed a little time. I knew she'd come around and start talking and communicating typically. All kids are different, just be patient."

First of all, I know all kids are different and I celebrate that. But some differences alert you to problems that can be worked on. Like global development delay, hypotonia, anxiety, sensory processing disorder and a severe speech delay. She's come a long way and has a long way to go (psst. we all do)

Do you know what it took to get her here besides FOUR hours of speech therapy weekly for years plus continued speech therapy now inside and outside of school? And almost a whole year of that speech therapy was spent getting her to focus on one thing longer than literally 5 seconds. THEN, she could start learning. 

It took occupational therapy, developmental therapy, physical therapy, neurologists, psychologists, orthopedist, pediatricians, speech therapists, EEGs, MRIs, developmental assessments, teachers, IEP meetings, constant practice at home, consistency, tears, sweat, prayers, ET FREAKING CETERA. 

It's not just time that got us here. It was hard work from her family, therapists, teachers, our church, the special needs community and so many more people, MOST OF ALL Willow. 

Please don't say that to someone who has fought hard to get their child somewhere, developmentally. Often, you only see the result and not the struggle. The struggle is so important. It's filled with lessons and purpose and dying to self and rising up new. 

If you've said this to someone don't feel guilt and don't feel bad if you've said it to me. I know it comes from many good places, especially when you want to praise her or you don't know what to say. It just feels invalidating. One sentiment takes away all the hard work we've done. I smile when I hear it, but I want to scream YOU DON'T KNOW WHAT WE'VE BEEN THROUGH. So I'm telling you now. 

I don't want to change Willow. I want to utilize the resources we have to help her navigate the world in her own way. She has a purpose now, just as she is. She did back when she couldn't speak and her future holds purpose even if she never learns numbers or letters. Who cares about letters and numbers when there is a whole world out there to love and serve? 

I want her to learn kindness, acceptance, tolerance, forgiveness, grace and hard work. Those things first OR nothing she ever learns from a book will ever matter. 

She is my wildflower 

Growing wild and free

I'll never change her 

She changes me

*Photographs courtesy of Kristyn Ash Photography

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