Waverly is on day 4 of the new seizure medication and thus far it hasn't been too bad. The doctors kept warning us of potential aggression. I almost wanted to see that in Wavey, because she has never displayed even a hint of unkindness. It looks like sleepiness and general malaise are what we will be dealing with. She is only on a partial dose this week and I am a bit concerned how drugged she will be when we reach the maximum dosage. I fear zombie-like behaviors.

I find myself growing more protective of her, especially when we are out in public. It took me a few days to work out why I was feeling this way. I think that over the past month, Sanfilippo has taken more of a hold on her. She is drooling more, appears vacant, and has lost her spark. It is more difficult to gain and maintain her eye contact. Her smile and giggle are hidden deep inside and growing impossible to find at times.

I'm sad that as we navigate life, people's perception of her is so wildly misunderstood. This snapshot of who she is in this moment is not at all definitive. I want them to see my pigtailed beauty who radiates love and kindness. I want them to be drawn to her eyes and to see the smile that used to light up across her face when she would meet a new friend. I wish I could play recordings of her infectious laugh that always brightened the room.

I miss her, yet I am so fortunate to still have her right here with me.

It is always unsettling to know if this is a phase that we will bounce out of once we get her seizures and medications under control. Or is this our new normal and I will speak of her infectious personality in the past tense.


Unknown said…
Your story was shared on Team Nola's FB page. As a mother and grandmother it hurts my heart to read what you are going through. Please know that as I pray for Nola daily I will be praying for you as well. God bless you.

Sharon said…
Thank you for sharing your heart and for giving your readers the gift of following your story. Big hugs to you all today. <3
Victor said…
The family history you are capturing is helping everyone see the Waverly you see.

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