Labels

I'll be honest, I've never been afraid of labels when it comes to Kasey.
At least I didn't think I was until recently- and it isn't that I was or am afraid of them per se.
In the past- I did not struggle too much with the thought of new labels on her medical history if its meant she gets the help she needs.

It seems in the medical community- you can't really get the help you need from doctors and insurance without "labels."

"Spina Bifida" "Hydrocephelus" "Fine Motor Delay""Osteopenia" "Hypothryoidism" "Focal Seizures" etc.

Those are all labels that I had no problem accepting and having added to Kaseys medical files.

However, recently we had a neuropsych evaluation done. We got super lucky and managed to get in with someone without much of a wait. The testing was difficult for Kasey. Lots of tears and frustrationg and it was definitely not one of her best days- which was in a way good because they got to see how well she functions on a bad day.

The follow up appointment where I got some of the results was tough and I shed a few tears both in the appointment and on the drive home (cue me trying to cry without letting Kasey know I was crying).

New labels.

New labels that were a bit harder to swallow than I expected.

New labels mean new research to do. New books to read. New studies to follow.

Then yesterday the official written up paperwork came in the mail. I'd thought I was handling this whole thing rather well until I saw it all in black and white.

"Neurocognitive Disorder" "Executive Function Deficits" "ADHD Combined Type" "Disruptive Behavior disorder" "Unspecified Anxiety Disorder"

5 more labels in total.

The harder bit to swallow was reading details of other things observed. The symptoms of depression that were noticed as well. Depression- in my almost seven year old. The percentiles and where she ranks.

I haven't cried over the results - but I'm reading it in small chunks. Reading it, taking it all in, and trying to figure out how to help her.

When you have a child born with birth defects- you are warned about a lot of things. With Spina Bifida and Hydrocephelus- its mentioned that there will be "low quality of life," "vegetable", "Unable to maneuver well." They warn you of all these things that really are not true for most of the Spina Bifida population. However, they don't warn you ahead to other things.

Like your child changing slowly until she isn't "her" anymore.

Like all the labels that you should be waiting and watching for.

Like the fighting you are going to have to do to get the services you need.

Like the people who are going to expect you to be praying for complete healing .

Like all the people who are going to expect you to try 5 million natural things before resorting to meds.

There have been times I have found myself angry that I wasn't warned. Why do they mention all these things that don't apply but neglect to mention the things that CAN occur. Forewarned should be forearmed right?

However, at the same time- I am truly grateful I was not warned.

If I was warned at the age of 18 what I might face and what Kasey would face- I don't know how I would have handled it. Emotionally and Mentally I don't think I would have handled it well.

Now at almost 26- I can deal with it all a lot better. I've learned to expect the unexpected. I've learned somewhat how to process and try to deal with all of it. Yes, there are tears. There are long relaxing baths where I am reading books and studies on learning disorders. Yes, there are times where I want to drink a whole bottle of wine (and resist doing so).

BUT- I know that these labels help her in the long run. I know that knowing how to help her means she can lead a better life. Knowing all these things helps me help her... and myself. Because its easier to teach a child when you know how they need to learn.

Whats the point of all of this ranting?
It's so others know they aren't alone.
It's so others know that the labels on your childs medical chart aren't there to hold them back- but to help both you and their care team to help them in the best way possible.
It's so you know that you CAN get through this.
I CAN get through this.
Kasey can get through this.
It's doable- even when it feels like it isn't.

Because knowing how to help them smile again makes all those labels worth it.