One vein after another the nurses blew... 4 TOTAL!!... I cried so hard realizing that I am putting my child through all of these tests. For what? Yes...that is it...for what?!?
So some PT can have her "happy day" that yes, indeed, Lilah does have some "thing"? Am I helping her or hurting her? Do we spend more time in therapy than at home?
Each time they "test" Lilah the nurses seem to blow her veins, then the Doctor will come in and rescue her and find it on the fifth try.
Next time I am asking for the Doctor RIGHT AWAY!
I look at this face...
and I think to myself, "Does it really matter the "name" of it? What if it really is NOTHING more than my child is visually impaired?"See, I research...and research...and research...and because my town is SOOOOO lacking help for the Visually Impaired, not many people know how to work with Low Vision patients.
It seems too many times that the "professionals" like to treat their "patients" all the same. THIS makes me VERY upset. See, when you can't see very well...things change. We see with our brain. The eyes are just a vehicle. So, when the eyes aren't "right" everything changes. My child cannot see well...take the time to THINK about what it would be like to not be able to see? When you go to the bathroom in the middle of the night, do you walk fast or slow? Do you run to the bathroom in the pitch black? OR do you walk slowly, hesitating with each step because you cannot see what is in front of you? Do you shuffle your feet in an effort not to trip on that toy you just know your child left on the floor? Or do you run? Be honest, you slide your hand along the wall, walk slow, run your hand up and down the wall until you find the light switch. What about Lilah?
What if you could never turn the light switch on?
Recently I stumbled upon a "message board" for parents of Visually Impaired children. The conversations were from 2006, but EVERY parent discussed when their "blind, VI, low vision, etc" child walked, talked, potty-trained, etc.
And you know what???
Lilah is right on track for being a Visually Impaired Person. Actually, she is babbling much quicker than some of the other patients I read about. Now, I am very aware that this can differ from patient to patient. BUT, my point is...
ENOUGH tests! I am so tired of watching my baby cry, and scream, and be poked and prodded because she is "different."
I am putting a HALT to it.
When we receive the results from the MRI, that will be the last of the tests for a while.(unless the neurologist finds something that needs to be treated)
I want my child to enjoy LIFE!
So, my new years resolution is to spend more time enjoying life with Lilah and less time letting the "professionals" tell me what to do. She is my kid. God gave her to me for a reason....and I think I am doing a pretty good job!
I love you Lilah Bird!
2 comments:
That's a wonderful resolution, Katie. I think I need to do the same. Although Joshua doesn't get many tests I do need to just enjoy him and enjoy life.
While we have a MILLION answers to WHAT there is no reason to why so what is the point. I have really watched you struggle feeling the need to know. Like I said I have a five year old and for the first 2 years I wanted everything you did. To know what the future held, to know why, to know what if's. There is no answer with a name. Does it matter if it comes back that she has brain damage... NOPE because you would do the exact same thing. Any name you have for a delay the exact therapy is involved. It just is. The outcome will be the same. 5 years later as we defy the odds everyday, you learn to appreciate it MUCH MUCH more. There is a name but if you have a name you have allowed it to defy you, especially when you go in search of it. I avoided the "name" for 2 years and would breathe a sigh of relief when we missed it, but when we got the name it did nothing but have a name. It was still my child.
It is a process to accept all of it. It will be a process to allow it to work this year.
Good luck
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