Goodbye Nathalie

Can I just say that this month has been a rough one so far and it's only half-way through. Not only have The Bossman and I been dealing with Taylor's declining health, we have had to deal with the declining health of his mother. We've spent the last few backs going back and forth from hospital to care home to hospital...a crazy merry-go-round of emotions.

The Bossman's mother passed away yesterday afternoon and she is finally at peace. Even though I know The Bossman is happy her suffering is over, I know he will be grieving. However, the journey getting her to her final peace has been very emotionally draining for him.

The Bossman's parents have been married for 65 years. They met when his mom was 14 & his dad was 18. That's a lot of time together. Unfortunately, sometimes, it makes it hard to let go when it is time for one to pass on.

While The Bossman and his siblings knew the end was near, his dad was suffering from a huge, but understandable case of denial. This resulted in her last few days being ones that were filled with needless pain. I kind of know how he feels. Am I going to be able to make the right decisions for Taylor when it comes time or am I going to want to hold on to her for my sake and cause her pain?

Those are some serious issues that you don't know how you are going to handle until that time comes. All I could do was to support The Bossman as he tried to support his dad. I am glad that I got to know his mother even though it was only for a short time…4 years.

What's so funny is how she took to Taylor much to everyone's surprise. Not to imply that she was mean or anything, but she was already suffering with Parkinson's when Taylor and I met her and The Bossman said she was a little "grumpy"…but not with Taylor. She's the one that referred to herself as "grandma" when talking to Taylor…again, another surprise.

She was nice to me and I knew that she liked me. That's a big thing considering I was with the baby of the family and usually no female was good enough for him. Sometimes I still think that's true. He's an awesome man from an awesome family and I'm glad that they always make me feel like a part of it. They made Taylor and I feel welcome when we moved 2000 miles away from our family.

As far as making the right decisions for Taylor…I know I don't have to make them alone so that takes away a great deal of the fear. I know The Bossman will always put what is best for Taylor ahead of what my feelings might be and that he will gently guide me to the right path.

Right now I am his support during his loss. One day, he will be mine.

A Case of the “Why Me’s”

I know I haven't posted here very much lately. I'm sure the friends I've made through this network probably think I'm some kind of flake.

I got a call from Taylor's school this morning telling me that I needed to come and get her because she has a temperature of 100.9. This is happening at least once a week now. On the way home from getting her, I just started crying. I realized that I've been neglecting my blog and those of my friends because I'm engaging in a huge case of avoidance.

I'm watching my child's health decline faster and faster and I guess if I don't write about it, I can pretend it's not happening. Deep down I realize that this doesn't really work. I see every minute detail of change that goes on with Taylor. I KNOW what is happening with her but all of a sudden it just seems to be coming too fast…faster than I can deal with.

She had a cardiology appointment last Friday and the nurse couldn't find a blood pressure or her pulse on the left side of her body. The doctor looked at how swollen her left foot and ankle is and had trouble finding a pulse there as well. For some reason, unrelated to her heart he says, she has decreased blood flow on the left side of her body. He said if it were due to the heart failure, it would be both sides. So now we have one more thing to "figure" out.

I feel like I'm reaching my breaking point even though I know that that is a luxury I don't have. Taylor needs me and my strength as her energy and strength declines on what seems like a daily basis. Indulging in self pity is pointless yet that is what I'm feeling at this moment. Why me? Why my child? It's stupid and I know that. There are so many more parents dealing with even more devastating issues than I am and I've always prided myself on being strong.

Right now, I don't feel strong. Right now, I just feel scared because I can't "fix" it. I am sorry for avoiding the wonderful friends I've made in the blogging world. I think it's because I know that the topic of Taylor would come up and I wouldn't be able to keep my emotions in check.

Okay, I think I'm done with my pity party. Sometimes just being able to just throw the words on the "paper" help a great deal. Time to put on my big girl panties and go back to being strong.

A Great Christmas Present Reaction

While I'm working on my catch-up post, I thought I would send you to The Bossman's YouTube page. I would imbed the video here, but after all the hard work he put into my grandson's Christmas present, he deserves the hits.

So if you would like to see an awesome response to a Christmas Present…just go here. Also check out the shorter-remix version here. Feel free to leave comments if you like. Goodness knows I have an awesome Bossman and he deserves all the kudos in the world.

He's made my grandkids just as much a part of his life as I am and I love him very much.

I’m Still Among the Living

I really need to catch up with everything. I can't believe it's been so long since I last posted. I just know things have been very hectic here and my blog always seems to be the thing that gets left undone.

I suppose in the scheme of things, that's how it should be but I always have this nagging voice in the back of my mind going…"shouldn't you blog, really, shouldn't you at least say you are alive, really?"

So, here I am, letting my friends know that I am still a blimp on the planet. Things are going as well as they could be with Taylor and life is just a bit topsy turvy right now. I'll share more later, including Christmas pics since I know I'm way behind on that.

I hope this finds everyone having a great start to the New Year.

Taylor vs the Canned Goods

*I think I fixed the video. Let me know.*

As promised, here is the video of Taylor and her canned goods sorting fun. I have no clue what it is about this that she loves, but goodness knows, I'm not going to keep her from doing it. I just need to make sure there are no glass objects in the cupboard. Seizures and glass don't mix. I learned that after this video was taped.

As you can see, Taylor isn't happy that I'm "annoying" her with my presence. She does tell me to leave. Please pardon all my talking on this video…it sounds funny to me. Also, since I have no editing capabilities…please ignore my extreme close up at the end. I promise I do look a little better in real life than that video show.

Taylor & the Train

I know that I need to post an update on Taylor's medical situation but I thought maybe I would just post a video I took of Taylor Saturday night. She has never really been fascinated with all the train stuff going on with The Bossman.

However, this year, he bought a G-gauge train for under the tree. Taylor was fascinated with it. She just lay on the floor with a pillow and blanket watching the train go around and around. We are working on teaching her the sign for train. Of course, it's Taylor, so she has to modify it her own way.

We are watching Taylor a little more closely right now. I knew that her heart valve would cause a problem at some point in her life, I just wasn't expecting it right now. I hate looking at the information online though. When they start explain valve replacement, it is open heart surgery with the breaking of the sternum. Just typing that makes my chest hurt. I hate having to make those decisions. It's not like I can ask her what she would want.

Okay, enough of that. Here's a nice video to leave you with.

Busy, Busy, Busy

I can't believe it's been 10 days since I've written a blog entry. Things have been hectic, but I hadn't realized just how much until tonight. Yesterday was The Bossman's birthday. My daughter and grandkids came over and we surprised him with a cake and some presents.

This past weekend, The Bossman and I took my grandson Gavin to a train club in Corvallis. It was just a Bossman, Nana, & Gavin trip. He is autistic and it really shows in these videos…watch the hand flapping. However, he was so good and he was so excited that I loved every minute of it. Seeing his excitement is contagious and I have to keep watching. I've put Part 1 of the video here in this blog, but if you want, you should check out parts 2 & 3. It was Gavin's turn to take care of the class bear, so that is why my grandson is holding a bear dressed in pink…her name is Miss Katie Bear. All the kids take turns taking her home and they write and put pictures in a journal for the class. It's a cool idea.

Taylor has had a really good week. Tomorrow she has a neurology and a cardiology appointment and then it's off to get some blood work done while they are flushing her port. I wish I could say that the new medicine is helping her seizures, but I haven't noticed any decrease yet. I'm still keeping my fingers crossed.

For the past few days, Taylor has been obsessed with rearranging the canned goods in the kitchen cabinet. She spent 3 hours straight, just standing in the kitchen, pulling all the of the food out of the cabinet, putting it on the counter, and then back in the cabinet. She's done this for 4 days in a row. Normally she'll only do it for a minute or two. I've got some video of her doing it. I'll have to get The Bossman to download it for me. For some reason, my computer doesn't let me edit the movies. I guess I need to get the repair guy on it. *laughs*

Business has been extremely busy. I am definitely not complaining as that is what is allowing us to have such a great Christmas and pay all of our bills. November was our busiest month since opening the business in July of 2008 and December shows no signs of slowing down. We got in 5 computers yesterday alone. People let their anti-virus expire and then load the computer with viruses…bad for them, but good for us.

I hope everyone else is having a great month and that all my friends and their families are staying healthy. I'm so far behind in reading everyone's blogs. I promise I'll catch up soon.