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To the Mom Whose Child's Brain Was Just Described as 'Abnormal'

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When I was told that the white matter in my daughter’s brain looked abnormal when she was just 6 days old, I was devastated. I didn’t think it could get any worse, but then at 7 months old, she was diagnosed with Infantile Spasms. As tears rolled down my face, I listened to doctors ramble on, using buzz words like “diminished potential,” “catastrophic childhood epilepsy,” and “significant developmental delays.” These terms left me with more questions than answers, so each time I asked, What will life be like for Bexley? I wanted them to put those terms into concrete examples — like, Would she walk and talk? Where would her cognitive abilities fall? Would she have friends? Both times they were unable to provide the answers I wanted to hear; my mind quickly jumped from one worst case scenario to the next.

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Bexley is now 15 months old. We’re still trying to make sense of her diagnosis. While I still can’t answer many of those questions, here are some things that I so desperately needed to hear on those difficult days:

  • First, take a deep breath. You’re overwhelmed and scared right now. You’re a planner, and this wasn’t part of your plan. Things like this aren’t supposed to happen to you. You took great care of yourself while pregnant and had a perfectly healthy pregnancy. You’ve just been thrown a major curveball. I can’t tell you that it won’t be hard. I can’t tell you that you won’t worry like you’ve never worried before in your life. However, I can tell you that it’s not the end of the world. Your life will still be filled with happiness, even if things are different than you had planned.
  • Focus on the inches, not the miles. Milestones are everywhere. It will hurt when you see same-aged peers begin to surpass Bexley. It will feel like a kick in the gut when you see babies significantly younger than her begin to do things she can’t do. There are days your heart will ache because it seems so unfair that she has to work so hard to accomplish things that seem to come so naturally to other kids. However, all those feelings will disappear every time you see her do something new. I’m not just talking about the big milestones; I’m talking about the smallest little improvements in her development, like beginning to bear weight on her legs, waving “hi” to people at church or clapping for herself when you praise her. Those moments will fill your heart with a kind of joy you’ve never experienced before. The kind of joy that makes you want to jump up and down and share the good news with everyone you know. These moments will make all the hard work worth it. In those moments, you’ll also realize you have actually been given a gift because you will notice, cherish and celebrate every little improvement in her development. Inches eventually turn into miles, so focus on and celebrate the journey without wasting all your time worrying about the final destination.
  • Your daughter has the most infectious smile and giggle. Her smile and giggle will continue to be the best medicine. On the days when you’re worried or not sure if you’re strong enough to help her face the challenges, her smile will give you all the strength and reassurance you need. When she smiles at you, you will know that no matter what the future holds, it will all be OK.

When you remind yourself of these lessons, you will feel like the luckiest mom in the world to have been given such a beautiful, brave and determined little girl to take care of and love!

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Originally published: January 29, 2015
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