The terrible twos. Every mother knows them, and waits for them expectantly. Many times if our children are naughty at 18 months, we say, “Oh no! Terrible twos already??” Or more seasoned mothers laugh and say, “Twos are nothing compared to THREES!” We know that the “worst” of our sweet angel baby is going to come out: through tantrums, asserting independence, causing us to say “no” until we turn blue. It’s a difficult time to be sure, Dads add grey hairs to their beards and Moms check their faces for extra wrinkles. But you get through it, all parties involved better because of those terrible twos.
I’ve dreaded E’s two for a different reason. When we first received her diagnosis, our doctor said that both of her genetic syndromes were known for seizures. We first took the news that it meant they both manifest themselves together through seizures, but her doctor corrected us and said, “No, it means she has a ‘double whammy’ of seizures. She has twice the chance of having seizures.” And, just this week E underwent an MRI for some updated images of her brain. They found a Grey Matter Heterotopia, which means tiny part of her brain isn’t where it needs to be, and the biggest symptom of that is… epilepsy. A triple whammy.
A triple terror whammy.
Each time she twitches, zones out, or moves a certain way my heart stops. We have no idea how bad of seizures she will have, no idea. We don’t know if she is facing simple eye twitches or if we are going to have to watch our baby writhe uncontrollably on the floor while we look on helplessly. We don’t know if her little brain will be unaffected by it or severely damaged. We don’t know if she will recover from them, back to the sweet girl we know or if she will be completely changed. We don’t know if we will lose her… yeah “Sudden Unexpected Death in Epilepsy” is a thing and it makes me sick to my stomach.
How can I leave her alone? How can I sleep? How can I drop her off in a nursery and walk away? How can I look at her sweet face and not think of her own brain that will betray her?
The battle between trust in the Lord and His knowledge and terror at our unknown is at a climax. I wrote a dear friend this evening and said, “It’s hard to live in victory when everything feels so stacked against her.”
Yet, here I am. Scrolling through Pinterest for second birthday party ideas while researching grey matter heterotopia. E is sleeping, after a long day of being an adorable, almost terrible two-year old. Life is moving forward. I am breathing. She is well. We were living in victory before that phone call, and we will continue to.
Just as we greeted the rising sun with E in our arms and the Lord at our side this morning, we will greet any task that is set before us in the “terrible” twos, threes and prayerfully many, many, many years to come.