My Thoughtful Spot

On April 20/2008 I wrote this blog entry....

It's been more than ten years since my hubbie and I had a break together. Ten years of catheters and dirty pull ups, the challenge of clean up bigger with each year of growth. Ten years plus since we've had a night, let alone a weekend, for US. Perhaps were our children typical children this wouldn't matter so much. However, they're not. One of them is very disabled. A second one more mildly so. Both are a lot of work and while the teenagers help out wonderfully they're not yet ready to be asked to take on a weekend. It's too much to ask a 15 yr old to change and catheterize her almost 13 yr old sister. Whats sad? She's willing to learn when nobody else is.

I just want one night. ONE. it would probably do us for another dozen years. Is it really so much to ask?

I guess so.

I've heard different reasons. They make me wonder what people actually think of us, her parents. Those who are afraid to keep her in case something happened. Do they think that we, those who love her most, don't have those fears? I once tripped over her unconsious body when I turned a corner in our house. She was about 3. Soon afterwards her sister came frantically calling me, Brianna wouldn't wake up. yes, things DO happen but I WORRY TOO. It's not just others who are afraid, we live with these fears 24/7. Every hour, every day, every week, every month. all the time, those possiblities are part of the core of our lives. Might we wake up and discover her gone again? Well, even with the precautions we take - yes, we might. Sure, I'd expect a childcare giver to be concerned - but I AM TOO. Those fears that others can't deal with for an overnight are things that we, her parents, have to consider on a daily basis too. I go to bed everynight not knowing what I may wake up to. I've taken all the precautions I can, I've done everything in my power, I pray. Knowing God is in control I pray for His peace and I fall asleep wrapped in His arms. I soo understand the fear that goes with caring for my daughter. I also understand that we need someone to step in and fill that gap for us. It's been said, I think even proved, that couples with disabled children are far more likely to divorce. I can't help but wonder if it's because of struggles like this. Because of the years and years of no breaks. It wears on a person after a while, no matter how much you love the person you are caring for.

I've posted this once and have now added a bunch more to it. It's very possible I'll add to it again. I'm really struggling with this feeling that other peoples fears will keep them from meeting needs - our needs. I'm going to begin praying mightily for someone to realize that God would get them through the same way He does us. To realize that sometimes stepping out of your comfort zone not only blesses the other person, but yourself too.

For now, I'm written out. Whether anyone reads or not makes no difference, I've released this from my mind and in so doing perhaps brought some peace. I'm about to ask God for a miracle. The miracle of a brave and loving soul for my daughter to hang out with occasionally. Someone just like my sister.....

ps. She hasn't seized since she was 5. No more little bodies that wont' wake up to worry about...

I need to share that God HAS answered that prayer. He has sent us the most AMAZING woman. She takes Brianna for days at a time, loves her like her own child, teaches her as if she were her mother. She is a gift straight from Heaven. I get time for myself, we get time as a couple and this anniversary (Nov) we are looking forward to getting away! She is, indeed, a brave and loving soul. She has Brianna and her best friend, another disabled 13 yr old. They love the time together, they love this lady, it's like a vacation every month!

I find so much strength in music. My current favorite, sang by Selah..

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

There is no life - no life without its hunger;
Each restless heart beats so imperfectly;
But when you come and I am filled with wonder,
Sometimes, I think I glimpse eternity.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up: To more than I can be.

waiting has never been my forte.

But thats what I'm doing. Waiting to hear from the neuro surgeon. Babysitting the phone. Mark has six days off, which is good since Bria is home for 2 weeks! Without him I'd be in trouble. I did some of her care this morning, it was a challenge. Not sure how the rest of this time is going to go but now I know what to tell the social worker!

In the mean time I'm getting pretty darn good at this wheelchair. I handle it like someone who knows that they're doing. haha. I can pop a good wheelie and i'm learning how to catwalk. So far I haven't tipped it over backwards... (note the so far!)

I'm a little frustrated a lot of the time. i'm a lot frustrated a little of the time. Sometimes I get angry over the tiniest of things. Sometimes I laugh over the strangest of things. I'm a little bit ... all over the map. But I guess thats to be expected all things considered.

so, this is about all the new news I have and most of it isn't new! The dog is pacing and driving me MENTAL. It's time to head into the kitchen where i can't see her pacing and can't hear her nails on the floor.

Later y'all...

Homeschooling on our big big bed

This song has taken on new meaning to us.....

Tomorrow mornin' if you wake up
And the sun does not appear
I...I will be here

If in the dark we lose sight of love
Hold my hand and have no fear
'Cause I...I will be here

I will be here...
When you feel like bein' quiet
When you need to speak your mind
I will listen
And I will be here
When the laughter turns to cryin'
Through the winnin' and losin' and tryin'
We'll be together
'Cause I will be here

Tomorrow mornin' if you wake up
And the future is unclear
I...I'll be here

Just as sure as seasons are made for change
Our lifetimes are made for years
I...I will be here

I will be here....
You can cry on my shoulder
When the mirror tells us we're older
I will hold you

And I will be here
To watch you grow in beauty
And tell you all the things you are to me
I will be here

I will be true
To the promise I have made
To you and to the
One who gave you to me

I...I will be here

And just as sure as seasons are made for change
Our lifetimes are made for years
'Cause I...
I will be here....
We'll be together

'Cause I will be here

I have it down to a science. Just how to wheel up to what so I can get what I need. I've always been good at leaving dishes in the drainer so usually i can find what I need within reach right there. Knew there was a reason i did that... lol

So, cereal out, bowls, milk, (whoever left the milk in a sticky spot gets to wash my pants) all set. two bowls of cereal as James wants his "good morning snack" too. Hand him his with a little fear and trepidation. put it all away which involves a little zipping around the kitchen and a little back and forth to get at just the right angle to reach things. Finally ready to dig in.

Forgot to put milk on mine.

ARRRRGGGHHH.

Just now realized I forgot my meds. Thats not so bad however, out to the kitchen and back? You won't notice I was gone. The dog cowers however, as in my maiden run I ran into her kennel. Poor thing is traumatized for life.

I'll let you know how lunch goes. I'm trying not to even THINK about it yet!

MRI is over, I survived. Ativan kicked in about 10 min before it was over. I did a LOT of praying in there. Ladies said they got some great pictures. Wonder if I can have copies for scrapping? lol

Tomorrow I hope to hear from the neurologist. I'll be calling her if she doesn't call me. we'll see what she has to say.

James took this with my camera phone. He does great with a regular camera, but the phone one needs too much "still" for too long. It's a little blurry. And the background leaves a little to be desired. We'll get better when Katie gets home

Saw the neuro. Have an MRI tomorrow or Monday at the latest. It could be an MS flare up, it could be a stroke. I have very limited feeling up past my belly button (almost to my bra) and no reflexes in my legs.

Thats the short version. Completely not up to a longer version.

spinal stenosis is not related to MS. I can't help but wonder tho, as I read the symptoms of spinal stenosis, whether that has been the problem all along. Maybe? It will be some time (if ever?) before we'll have an answer to that but it's definately a question in my mind right now.

Here is a good source of some pretty basic information about spinal stenosis. I'm only learning as I go too. and maybe in a day or two this will be crossed off as a possiblity. Who knows!

I needed another possible dx thrown at me. I went to the Dr today. It's a fairly lengthy walk to where her office is from the parking lot and for reasons unknown even to me I declined a chair. So, by the time I got there I wasn't really walking. I was a person on two things that looked like legs, with two canes and a husband desperately trying to hold her up. I fell a few times, he always caught me. God Bless the man. The Dr was very concerned, as was the nurse, when I walked (well, whatever I did) into the office. I didn't look at them. I got into the room I was supposed to be in and fell into the chair. Then I met their eyes. Thats the thing with having a dr who truly cares about you, watching the emotion in their eyes when they see something like this happening to you. All professional, yes. But a heckuva lot of caring too. I walked for her, across the office. Well, I tried. I grabbed marks hand on the way by going one way and didn't move from hanging on to the desk coming back until I had both their hands. She's sending me for an emergency CT of the spine, and tomorrow I see Dr Pniak (neurologist). It "could" be spinal stenosis, which is correctable with surgery. Spinal surgery terrifies me, and yet.... "correctable" is appealing to me I must say.

so. Thats where I'm at. I have a walker which does do a better job than the two canes was doing. Mark and Katie attached a back back to it so I can carry my 'stuff'. Tonight I want nothing more than to climb into the tub, but hubbie went to work and I don't know that I could get out -- so the jury is out on that one. Tonight, for the first time in forever, I didn't say goodbye to hubbie at the door, standing there waving at him as he drove away. Some changes really suck and while that may be a small one it's a hard one for me.

It may be MS, it maybe me stenosis, nobody knows. The CT will tell us yes or no on the stenosis and we can go from there.

Welcome to a little bit of my world!