There are days when it’s hard for me to catch my breath. Days that send me to my knees begging for mercy and grace. Days that have me thinking those dreadful thoughts of “what if…” questioning every choice I have ever made.
When you are a parent of a special needs child, these times of suffering become intertwined with the highs and lows of caring for them day in and day out. I am grateful they don’t come around very often, but when they do, they slay me.
Indeed yesterday was one of those days.
Courtney has grown two inches since September. This alone is not worrisome.
Courtney has lost ten pounds since September. We have tried for the past month to put some of those pounds back on the girl to no avail.
Houston, we now have a problem.
These days I feel trapped in a life that can’t possibly be mine. I feel inadequate and unqualified. I am not smart enough or strong enough to walk this road. Aren’t we supposed to be buying prom dresses and talking about college choices? Instead I am left wondering if today will be the day she has a seizure that makes her heart stop or choke while eating because she doesn’t clear her food well enough. Will I hear her laugh or will she cry because she is frightened of a loud noise?
I have learned over the course of this young ladies lifetime NOT to panic when at first all seems lost. Courtney is unlike any other child I know. She follows no rhyme or reason with her condition. She marches to the beat of her own drummer. Her doctors shake their heads on a regular basis when troubleshooting the newest quandary with her care. This time is no different.
Yet, each time I am faced with a new medical challenge, a new question, I have a moment (or two or three hundred) of shear and complete panic. I begin to question past choices Jerry and I have made with her care. I allow fear to overwhelm my common sense and trust in God. All He asks of me time and time again is my patience, all will be revealed in time. Doesn’t He realize this is my kryptonite? This constant dance of waiting and wondering. All I want to do is run but I am trapped.
I have no where to go but to my knees and I have the calluses to prove it.
I am scared
I AM HERE. He whispers to my soul.
I don’t want to lose her.
I AM HERE. He soothes my constant fear.
I can’t do this alone.
I AM HERE. He holds me once more and carries me through the pain.
I weep for the young woman I thought would be sitting next to me excited and eager to take on the world, just like her momma once was. This was not God’s plan for my daughter. Again, with the patience and trust. Kryptonite I tell you!
ALL I ASK IS THAT YOU LOVE.
That is the easiest thing in the world requiring nothing but opening my mothers heart every single day. And so I do with GREAT JOY, I do. I hold this beautiful angel God sent for me to love, as she wrestles with seizure after seizure enduring each one as Christ endured the whip. I try endless therapies working to keep her limbs from becoming dead branches on a tree, hanging limply from the trunk.
I grieve what I thought would be our journey together. I must do this. I must acknowledge these things in order to move beyond them to the reality of who my daughter is.
She is the daughter of a King.
She is the heart of our home.
She is the light of Christ in a world that says she is unworthy of life.
I cling to her on these days administering extra hugs and kisses, telling her how special she is, how proud I am of her and how hard she fights and how much I love her. As I do this for her, so God does for me.
I don’t know what will happen in the coming weeks as we begin test after test to determine why she is losing weight. I do know that God stands at the gate ready to release me from my sorrow and pain whenever I am ready to give it to Him.
I am no longer trapped. I know that her healing will come when God welcomes her into His kingdom. Until then, I am free to love my child as God loves me, with absolute abandon.
So I shall.
Please keep Court in your prayers as we try to figure this one out. No compliments on my so called strength or pity for my circumstance are needed or wanted, just prayers.
Blessings and Grace,
*image found @http://cutestangel.wordpress.com/2009/11/02/trapped/
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