Thursday, November 19, 2009

Want a Label

We are still waiting for the results of all the blood work looking into metabolic disorders and gene/chromosomal abnormalities.

It would be nice to know something...a label of some sort, a diagnosis.

I get several special needs publications a month. I tend to leaf through them quickly and come back to the articles that I want to read. More often than not there is some article/discussion about labeling people.

Labels are not good. Don't people people in a box. Do not define people by their diagnosis.

I get the point.

While I agree with it to somewhat...I feel like we are on the flip side of that argument. I agree with it when it comes to social interactions but not necessarily when it comes to the medical world. Brayden has no label, no diagnosis.

We have NO road map to help guide us through this. Every new doctor or hospital, we start from scratch. I have a list of at least a dozen things that describe Brayden's medical condition but not just one good label that someone can wrap their head around. No diagnosis, no idea what to do. We have no idea if things are going to get better or worse.

For many months, we have been reacting to bad events. We would like to be proactive rather than waiting around for something bad to happen and then making decisions. If we had some sort of a diagnosis then we could have some guidelines, things to look for, when to push the panic button, ways to help him...not to mention, then the doctors might know what to do.

Having a label/diagnosis is helpful. I know it does not come with step by step instructions and every child is different within that diagnosis, but it gives you something. Something to help your child, prepare for whatever needs may be ahead.

I am not asking for a ribbon to put on my car or a rally to attend, just something to help Brayden in whatever way we can.

No label/diagnosis feels like you are walking in the dark, waiting to bump into something, stub your toe and then realize that was not the right direction. A label could give us a little light (even a minuscule one is better than none) to help us see.

So for now we wait...wait for that label/diagnosis...if it comes at all.

5 comments:

Leah said...

i agree. i have to admit i did feel somewhat relieved when wyatt had the gene for his condition and all the doctors assured me that this was it, no other reasons for what was happening. if possible, don't let yourself feel guilty about wanted a map or at least an outline about how to help him. and wyatt is lucky if i brush his teeth once a week. i've found that the strawberry toothpaste really does help...:)

The Bilslands said...

Definitely, we don't want our kids to be just a "label" socially, but medically it is good to know and definitely helpful when looking at treatments and future outlooks! Praying you will find a diagnosis! =)

Wherever HE Leads We'll Go said...

I completely agree with you. No one wants their child to be known by a label in social circles, but it is useful in the medical community. You are right - the label doesn't answer every question because each child is different, but it definitely would give you a starting point. You would be able to make plans rather than sitting back waiting to react to the next crisis. Praying that you are able to get some answers and soon.

Shannon said...

I totally agree with you, Carrie. I hope some answers come your way quickly. Being proactive instead of reacting to the situation is a benefit.

Michelle said...

Praying for a diagnosis.