I’ve caught some flack for sharing these words with other mommas on this medically complex journey.
And I get it.
So today, as I sit here in my pjs, on a rainy dreary Wednesday, where my eyes are tired from a lack of sleep because a three year old child sleeps in my bed out of pure fear on my part— and sometimes flashback nightmares grip my thoughts as I sleep keeping me restless rather than rested—
I want to address this.
Today, as I fight for my own mental and emotional health— and anxiety claws away at my brain because of all the trauma already experienced—
I want to address this.
Today, as I prepare for an IEP meeting, and catch up on a seizure journal, and track side effects, and look at the busy weeks ahead which include yet another out of town trip to see doctors— things I never in a million years would have pictured in my life—
I want to address this.
You’re right. It’s not always OKAY. I’m not always OKAY.
After my daughter had a couple seizures, I recall someone saying— “soon you’ll get used to it and it’ll just be normal.”
That horrified me! Normal?! This could never feel normal. Or okay. Or right.
And it doesn’t— still— three and a half years later.
Still each time my child has a prolonged seizure or a struggling day it feels like my heart has been ripped out of my chest.
The difference is this—
Now I know what to do. Now I’m caught off guard a bit less. Now, through so much hard trial and error, I know which medications will help her most. I know when to call 911 and what to expect from them when they show up. I know to grab the oxygen tank and how to turn it on. I know how to check her breathing and pulse just to make sure. I know when we need to go to the hospital and when we can stay home
for recovery. I know what that recovery looks like and to throw away my to do list for the day and possibly the week.
Today, I’m still coping, and grieving, and some days throwing an all out pitty party— it comes in waves.
The difference is now I recognize it when it comes on. Now I know that I might just need a day. Now I know to get alone and cry and pray and allow God to reset my heart. Now I know that maybe I should see a therapist— because this stuff is heavy and it’s okay to ask for help. Now I am intentional about writing down a gratitude list each day— because that helps. Now the fog of it all has lifted just enough to recognize the cycle I go through over and over.
Today, I’m still taken aback by these things on my to do list that seem so out of place— things no parent plans to be doing until they are.
The difference is now I know that I need to do them and I understand why.
So no— life will probably never be normal again— not as you remember it.
No— your heart will never fully forget the trauma and heartache.
And yes— this journey will change you and your life in more ways than you can imagine.
But— it will be okay only because you have hope in a God who is bigger than this hard thing and this hard life.
It will be okay, because you will still have good, beautiful, amazing moments.
It will be okay because your child will become your fuel, your passion, your very purpose— and you will see so much good in them— and they will teach you more than you could ever teach them.
It will be okay because you will experience such an immense, unreal love— one that looks a lot like the love of Jesus— and you will get it just a little bit more— the depths of His great love for you.
So no, it won’t be okay. But yes, it will.
Contradicting thoughts that somehow perfectly line up on this road. Do you agree?
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