I know it seems odd. I know it doesn’t make any sense on the surface. But, I am sitting here waiting to get my daughter, Saydi, tested for the flu and desperately hoping that she has it while at the same time wishing she was well.
I’m sure it will say she does but I’m waiting to hear it.
As a Mom of a child with special needs there are so many factors and so many things to consider. What separates me from the parent of a typically developing child is the fact that right now, the flu would be a relief.
While other parents lament the confirmation that the flu has hit their home…I am hoping for it.
It’s a funny place to be. It feels a bit unnatural and odd as I pop my knuckles and sit impatiently in anticipation.
Let it be as simple as just being the flu.
Because, if it isn’t the flu then it’s something else; and likely something that will leave a wake of defeat and sadness.
She just started the fourth and last of the clinically proven medications intended to treat her Epilepsy. The previous three weren’t successful treatment options. Here we are on the final medication, holding our breath that this is the one that will do the trick, but the question still hanging in the air is, will she tolerate it?
Saydi getting her 24 hour EEG and MRI before her confirmed diagnosis of Myoclonic-Absent Epilepsy.
It comes with a long list of possible side effects and she has recently experienced them in volume. I keep waiting for her body to quit rebelling but it’s been a long month. With each new weekly increase in the medicine we face the risk that this will be the dose that puts her over the edge; as has happened before. Flu like symptoms and a fever are signs that her body is responding poorly and that she isn’t able to tolerate it and are suppose to be reported to the doctor. The complication of the situation is enhanced by the fact that the actual flu is spreading through town like wild fire. So, which is the true culprit?
My mind keeps trying to run the scenarios and prepare me for the worst: a negative flu test. While the hopefully optimistic side presents it’s own logical case in my head. I shift uncomfortable in my seat and toy with my cell phone, absently turning it between my fingers. My other two healthy children are rolling along the doctor’s office floor, a form of play that sends my mind reeling: How many germs are there on THAT floor?
I’m don’t want the flu per say, I’m longing for the lesser of two evils for my daughter while expecting the rest of us stay well.
“The LORD has this…either way.” I silently tell myself, “It will be the flu…it’s most likely the flu.”
The space in my head is a lonely place. How many other parents are sitting there waiting for a diagnosis of relief? Or a diagnosis of the lesser evil? Am I really at a place where I’m hoping for the flu?
How does a Mother contend with the reality that she hopes her kid has the flu? It seems a bit uneven, monstrous, unbalanced…
But life isn’t balanced. It’s a crazy whirling twirling ride that doesn’t slow down. It doesn’t ask your permission or if you have the funds in the bank or whether or not you have the emotional stability to process what’s before you, it just happens.
So…how do you find the happiness in the brink? Where does peace find footing?
Can you live in optimism when the world around you seems to press down so hard your head spins? Can you find the hope when you’re out of options?
There is a case for “yes.”
There is peace even in the chaos. A slow dance in a gentle wind…
The breeze of hope and redemption is a constant rhythm by which my life is secured.
The flow of joy within me is the outpouring of a soul intertwined with my Savior. When the craziness rises up and the fire burns out of control, I can stand, not because I am not afraid, but because I know that my salvation and hope and goodness is found in Jesus.
That is my starting place but I have tools as well; coping tools and mechanisms that help me process and face the difficulty.
Prayer, music, the wind, dancing, and of course, writing are emotional outlets for me that help me face the storms.
The LORD is in them and they remind me that he sees me and hears me and loves me and my children.
I know I am not alone in my special needs parenting. I know that there are others who understand the difficulty of hoping for one diagnosis over another or those who face the burden and heartache of a child with an un-treatable illness.
Perhaps at times we seem strong, but for me, there is only facing the darkness one step at a time and putting my eyes on Jesus so that I know where my strength comes from when I feel weak. There is only a whispered prayer. There is only experiencing the power of the wind and remembering that the same God who created it cares about our situations. There is only dancing through the sorrow until a smile can’t be wiped away. There is only swaying to the sound of a musician belting out the emotions I can’t express or eliciting them from their instrument. There is only writing so that you and I both know we are not alone….
The door swings open and the nurse steps in. Her face is a bit downcast as she relays that my oldest daughter indeed has Influenza Type B. The nurse sits near me and begins to relay the options and what to expect. I hear her and yes it’s unfortunate, but inside I’m relieved that my child has the flu; a diagnosis that means we are not out of treatment options for her Epilepsy yet.
In the diagnosis of flu…there is still hope.
Hope that her long term future will be a better one.
“There is surely a future hope for you, and your hope will not be cut off” Proverbs 23:18
Author: Jacqi Kambish