My Thoughtful Spot

walking with two canes and still falling numerous times a day. Spilling more drink than getting in my mouth. Getting dressed takes 15 minutes, putting a load of laundry in the washer and folding a load of towels leaves me exhausted.

How long will this go on? Nobody has any idea.

so a friend and I have been talking about hair. I had planned a few months ago to get mine cut again. At the moment I've decided against it. If it becomes too much for me to care for again I'll have to. At the moment I'm fine.

I actually like my hair... can't say that about much of me!

You know who you are.

My heart goes out to the Chapman family. I can't fathom the pain they must be feeling. Please - join me in praying for Mary Beth and Stephen Curtis Chapman and the children.

There is a blog created to share Maria Sue with us and where we can leave our condolances (sp) for the family. http://chapmanchannel.typepad.com/inmemoryofmaria/

It's that time of year. I always find myself *too* emotional (who says how much is too much I ask?). We should be having a happy 17th birthday party in the next few weeks, but we're not. I still see so well the wiggly little body on the ultra sound screen. The beating little heart. The arms and legs waving all over the place. I didn't know to say goodbye. I had no idea that was the last time I'd see my little darling.

It was just the next day. The pain was so bad I almost couldn't help but cry. The blood so heavy they prepped me for transfusion.

I never said goodbye.

at least thats what it feels like. I have nothing on my plate today, tomorrow in the evening we take Katie to camp for ALIEN (training for teens), Sunday is going to be INSANE. But for 3 days I have few demands outside of my home.

I want to do piles of laundry but I really need the sunshine to come out. I'm trying not to use the dryer now that it's warm outside. Mind you, we still have snow, but the AIR is warm. We bbq'ed out there Tuesday night. We sat there in a t-shirts eating at the deck table while snow was piled on the ground below us. how strange!

I also really need to play some catch up with the house. The last months of having extra kids on a daily basis has played havoc with my attempt at organization. I must get back there! It's coming. slowly.

James is looking for something to eat, Brianna needs changing. Dog need out and fed, cat will likely be underfoot as soon as i get up. My day has truly begun!

one more photo - we were SO thrilled to see these yesterday!

On that note - hi ho, hi ho, it's off to work I go. later!

a picture is worth a thousand words....

This kid (yes, kid. he's only a year older than my son!) played a GOOD game tonight. He scares pucks away from the net! LOL

Good job boy!

I had a good sleep. We're one day closer to my friends baby coming home (she comes Thursday, we hope) and for the moment I am able to cope with life.

Now that James has managed to toilet train (three cheers for James!) my life is simpler than it was. Having TWO big kids (he's only six, but big enough) in pull ups was quite wearing.

I/we'll be ok. We're a tough couple who have faced a lot and made it through. I'm not giving up on asking for help, but for now the desperation has receeded a bit.

The blog is good for me. It's a place for ME, i write for myself, like a journal, so in years to come I can come back and read what was happening and where I was at with life. I enjoy doing this with my blog even now. I often discover things that we so tough at the time - but I had forgotten about them. Talk about survival!

It's off to my morning diet coke (Not June Cleaver - we have a few things in common!) and some breakfast. I wonder what we'll learn today! Oh - I forgot to share about the calculator. My poor unschooled 6 yr old... he now carries a calculator with him. His newest "thing", I sometimes wish he'd never discovered math. Oh the questions........... but he's learning lots. THAT is what matters. We did math the whole way to church yesterday. Longest trip of my life. haha

Laundry is going, dog is fed, time to actually publish this rather than forgetting again....

Later

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...

Today we worked in the garage and found some treasures we'd forgotten about. Or at least not seen since we moved. It was a good time together. We found movies we haven't seen in a year - we'll be happy for months.

James is shivering so hard his teeth are chattering and I can see his body shaking. He doesn't feel all that hot to the touch though. Poor guy. He's had a rough go of it the last few days. He's curled up on the couch watching a Rescue Heroes movie, he napped from 3 to 5:30 so he's up a little late. But thats ok. He isn't going to church tomorrow so doesn't have to be up in time to get ready, just in time to hop in the van while daddy takes the rest of us. They'll come back and hang out together - male bonding time while sick together?

Watching the hockey game and hanging with my son. I'm about to head out and start getting myself ready for bed though. Then when he crashes I can too. I'm thinking tomorrow is going to be a different sort of Sunday School class. I'm not 100%, can't find anyone to do my class, am going to be there anyways --- perhaps a veggie tales movie or some such thing would be a welcome change for all of us. I wish I could find something I know they haven't all seen a zillion times. ah well. I'll take some good snacks along.

I'm going to try to blog more. Whatcha suppose to chances are?

A few pics just because i can...

James, pre - haircut. Haircuts are REALLY hard for him so this was a big step.

this one was a pose for Angel, a bible school student who has helped in my SS class this year. He fell completely in love with her, as did I.

After the cut, a bath, hairwash and jammies..

he's looking way too grown up these days.