Tuesday, October 12, 2010

Regret

Before Kimani I lived a life with no regrets. It’s not like I hadn’t made big mistakes, hurt people and hurt myself, but I never yearned to go back and change anything.

Now I ache, I wish, I wonder... if only. If only I could go back and say no. No feeding tube that would eventually lead to bacterial meningitis. No CV line in her thigh, a procedure that would go awry and lead to an intense 106 degree fever and a heart rate off the charts.

Because one of those two evils stole my child.

Cortical vision impairment... the eyes can see but the brain cannot interpret... the processor is broken. Legally blind. I try to imagine her world... what it is like to see but sometimes not know what you are seeing.

Sometimes when she wakes up and is still in her crib, I know she doesn’t know I am there. She is looking right through me. I say good morning and whisper her name. She looks for me but her eyes do not find mine. I reach down and stroke her cheek and she wraps her little hands around my wrist. Ah, now she knows where I am.

But there is more to it than that. How much more? I don’t know and neither does Google. I have searched for answers, for others like us but I find nothing, no one. The results are terrifying and vast... brain damage, mental retardation... but no specifics, no list to check her off against, nothing to compare her to.

I can never go backwards, only forward, only onward. Perhaps to a pediatric neurologist who can tell me what I need to know. Maybe a fancy machine can see inside her head and tell me what is best for her.

And as for me and God, well I don’t know. I doubt he is going to tell me why, because after all, I already know why... shit happens. Maybe he will ease my regret and bring me peace, or maybe he will perform an old-fashioned miracle and heal her.

Or maybe nothing, maybe I’ll feel this way forever.

13 comments:

The Sanchez Family said...

Let's chat....I learned some amazing things at the Institutes for helping vision through visual stimulation. They do AMAZING work in this area of brain injury specifically. I would love to help. I know there is no ANSWER or SOLUTION but you can help her :) xoxoxoxo

one_plustwins said...

Wow, I can feel you pangs of regret. I am sorry. I hope you can find a way to move past this regret that is stinging right now. HUGS.

L.L. Barkat said...

Tears again. You are always doing it to me. But it's an honor to be given the inside scoop to your heart.

thetaooftulips said...

I'm so sorry dear. Hugs to you. We all do the best we can trusting the medical professionals at the time. We can't know what we don't know- and we can't know everything. I would feel the exact same as you in your shoes. You are a wonderful, insightful and sensitive mother to Kimani and all your darlings. She is blessed to have you and your family to love her.

Chromosomally Enhanced said...

thank you..I needed this..we are going to the dr on Friday for Maddie..and this reminds me I need to fight for the things I am not ok wth in her care...I need to be informed and then make a decision and not let the dr have all the input and final say...thank you...I hope you find what you are looking for..smiles

Holly W said...

We all do the best we can for our children based on the information we are given by our doctors...coulda woulda shoulda....it'll make you crazy...
I think most people would have done exactly what you did...and Kimani loves you....and you love Kimani...and now that's what matters...

RissaRoo said...

Oh, so hard...I am so sorry that the answers are not more clear. The one thing that is clear is that she is lucky to have you, lucky that you are her champion and her advocate and that you always have and always will do everything in your power to protect her. The choices you made then were the right choices, based on what you knew and what she needed at the time. You couldn't have know what would happen, I know you know that but Oh...my heart hurts for your regret. Sometimes there is no place to put the blame, my friend. Don't take it up yourself...lay it down, because it doesn't belong on your shoulders.

DownTownDan said...

I cannot imagine a thing so terrifying. I'm sorry that you can.

WalkOnWaterMom said...

Our little boy has CVI as well. It is heartbreaking at time. I know the look you are describing, when they look right through you. Jonathan will even search with his hand to find a toy that is right in front of him sometimes. I have also heard of the visual stimulation therapies. We are in a rural area, where it is not available. But we may take him to Childrens Hospital before the snow hits, and see what they have to say!!! Our little guy came to us Cerebral Palsy from a stroke while still in the womb (through foster care). Then developed CVI from "unidentified trama", a seizure disorder, failure to thrive ..... and all this led to his g-tube. I hear your frustration with all the decisions we are forced to make with the information we are given, but God has a plan for her and for you! He will use this situation for good! "All things work together for good for those who love him" Romans 8:28
Proverbs 3:5-6 (King James Version)
"Trust in the LORD with all thine heart; and lean not unto thine own understanding.
In all thy ways acknowledge him, and he shall direct thy paths."
Hang in there. Hope you can find some answers and ways to help your daughter!

Kathleen2so much to say, so little time said...

I will pray for you, you amazing child of God.

Lisa said...

I can't even begin to understand, or know how you feel. I wish you didn't have to understand and feel it every day. But she loves you. You're mama. She loves you even if she can't see you. Love and hugs to you.

Joann said...

Why is it that the Cross is so eloquent. "I can never go backwards, only forward, only onward."
I would add that you are going inward as well; only love like yours will grow there.

Jasmine said...

I haven't been around much. And I'm sorry.

You always touch my heart with truths that are good for me to touch and move through.

I'm sorry for your pain and do not have encouraging words. I myself am trying to figure out the mysteries of God. Or maybe I never will...

I know one thing...God will do what He wants to do. And I know He loves our children more than we ever could.

Stay strong; Stay in prayer...

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