ALD Mom Tells It Like It Is

I recently got together with a sweet friend, who has a six-month-old. It was the first time we’d actually talked face-to-face since her daughter was born, and the first time I was able to hear firsthand about the struggle and hardship she had been going through since her newborn arrived. As she processed her past six months and the amount of stress and anxiety she has been walking through, my heart just broke for her. Multiple times during our conversation tears filled my eyes, not only because of how hard life had been for my friend but because it brought back memories of my first few months of being a new mom.

The struggle is real… and if an adrenoleukodystrophy, or ALD, diagnosis becomes another factor in the “new momma world equation,” this ALD momma voice brings a whole other context to consider, “I feel like I am fighting a never-ending battle that I just can not win.”

Most of the time, I am such a mom.

As a mom, I’m supposed to care about everything: growth charts and grades, bedtime stories, brushed teeth, and bowel movements.

And I do.

I care about checking homework folders and attitudes, about reading levels and chapter books, the dental appointments, nutritious little snacks, and memories.

I’m a multitasking mofo. I plan. I punish. I pin shit on Pinterest, and then sometimes, I actually make that shit.

Most of the time, I mom so hard! I’m on the ball!

I read all 2,543 end-of-the-year emails from the PTA.

I show up for all 158 special assemblies, on time, wearing a freaking bra and everything—including bringing the baked good donation for the yummy treats reception table.

I do it. I’m a mom.

And with all that, there are other moms that put me to shame. They deal with so much more than my rants.

Click here to read about one adrenoleukodystrophy rock star mom!


How do you cope with ALD struggles? Let us learn from you and post in the comments below.

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