‘I don’t want to be in their club.’ I didn’t want the label, the IEPs, the long-term care plans.’: Mom to daughter with special needs shares journey to acceptance, ‘This secret world is full of beauty’

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“I don’t want to be in their club.

I remember when I first started to think my daughter’s developmental delays might not just be delays. She’d been in therapy for a while, and although she was making forward progress, she seemed to be falling further and further behind her peers in every area.

I’d get excited about the progress she was making and the milestones being met, but then we’d spend time around another kid her age and my eyes would once again be opened to just how far behind she really was.

I’d beat myself up for comparing her to other kids and try to convince myself everything was okay. I’d comfort myself with those familiar phrases…the ones all the well-meaning moms use to try to ease their minds: She was just ‘going at her own pace,’ ‘every kid is different,’ ‘give therapy time,’ she will ‘catch up.’

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But late at night my mind would wander…Special Needs. What if she has special needs? What if I’m a special needs mom?

If I’m being brutally honest, I didn’t want this label for my kid because I didn’t want the label for myself that came with it. Special needs mom. Nope. Count me out. I didn’t want to be an advocate or a therapist or have to worry about inclusion or IEPS or long term care plans. Those special needs moms were heroes, but I had zero desire to be a part of their club. Count. Me. Out.

But God, God had other plans. Little did I know, I was already in their club. Over the last year and a half, the Lord has been so kind to change my heart— to help me not only accept this life He’s given me but to be grateful for it.

It didn’t happen overnight and I sometimes still find myself wishing things were easier, but I love my sweet girl exactly the way God made her and I can honestly say I wouldn’t change a single thing about her.

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If you find yourself struggling to accept the life you’ve been given, it’s okay. This gig isn’t easy and it’s natural to run from hard things. I get it. But let me just say this— this ‘secret world’ is full of beauty and miracles and this club is actually pretty great.”

Special needs mom poses with her two daughters while on a hay ride, one with Coffin-Siris Syndrome
Courtesy of Madeline Webb

This story was submitted to Love What Matters by Madeline Webb of South Texas. You can follow her journey on Instagram and Facebook. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Madeline here:

‘I spent the first year of my child’s life blaming myself, not wanting my child to have ‘special needs.’: Mom to daughter with Coffin-Siris Syndrome urges ‘you are your child’s best advocate’

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‘She is the only person I know of with this mutation.’: Mom shares daughter’s journey with rare Coffin-Siris Syndrome, ‘We are the lucky few’

‘I have a daughter with special needs. I don’t have a special needs kid.’: Mom advocates for inclusive language

‘Every day felt daunting. But I had to do what was best for Charley, right?’: Special needs mom urges ‘your mental health matters’

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