Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, June 17, 2013

Selective Memory

It has been 7 years since we heard the news.

I had allowed myself to forget some of the details so when things started changing a couple months ago, although I was concerned, I wasn't feeling that sickening panic.

Until this morning.

Today a friend of mine and I were discussing this blog. He has been reading here for five years. I mentioned that I started the blog in 2005, but wasn't really "into" it yet. It was the post I wrote on April 29th, 2007 that brought me back to blogging. (please go read the post I linked to for details)

All these years we have coasted along, noticing little changes here and there but nothing that would have us running back to the doctor. But in the last few months, we've noticed that Angela has become less able. Tiny bits of her skills have been lost. Things she could easily do before she is now needing some help with. Not much, but enough to make my sensors go off. Her gait has changed a tiny bit. The biggest difference has been her speech. Even Dean and I have a hard time understanding her much of the time.

This morning I went back and read that post from 2007 and I'm shocked at what I'd forgotten.  Some of the details in the findings of  her last MRI and the prognosis given by several doctors across the country. I was living happily in my state of selective forgetfulness. It is time to come out from the shelter I'd created for myself and deal with some things.

I called the neurologist to schedule an appointment, knowing Angela will need a new MRI done. She has been seeing her pediatric neurologist since she was 4 months old. He knows all about her. He knows she has never followed the rules.

But Angela is 17 now. They want her to switch to an adult neurologist.

I begged.

The neuro's nurse consulted with him and he agreed to see her again but then she needs to switch to one of his partners who works with adults. Don't they know she's just a baby???

I hate it. I hate that she's getting older. I hate that she's going to have to change all her doctors. She's a complicated KID with a history I will have to explain over and over again.

And have I mentioned I am extremely resistant to change?

I don't want to repeat an MRI but I know it's going to have to be done. It's been too long since her last one. I don't want to know what is going to show up on it. I just want to keep coasting. Knowing won't change anything but it will bring with it  more worries. God has this, yes. God won't wake up every morning wondering.

3 comments:

Kate said...

Oh, Leah, I am so sorry. I have only been reading about a year or a little longer and had no idea of these other issues.

Do you mind my asking how it is that she's done so very well since that post in 2007? Not sure if she did end up having surgery or if something else was done?

I will be praying for all of you. The waiting can be the very hardest thing and I am praying for both peace and unexpected joy in this time.

Blessings,
Kate

Leah S. said...

Kate, probably a better question would be how has she done so well since her first stroke at 4 months old? She had two or three strokes between 4 and 6 months (we don't know exactly how many because she was having TIA'c constantly during that time) She would completely stop using her left side for several days at a time. She has never had surgery because the area of the carotid stenosis is in the brain stem and not operable. About every two - 3 years she has some kind of "event" that causes us to take a closer look, but this is the longest she's ever gone without some change. In April 2007 we were told she was basically a time bomb. At some point she will have a massive stroke. It could happen today or it could happen 20 years from now, there is no way to know.

Cindy said...

Leah I can't even imagine!! I'm just staring at the comment space trying to figure out what to say. This is scary and stunning. I will begin to pray for Angela and your family.