Feeling Like an Outsider Sometimes

I haven’t been blogging about Taylor much lately.  Part of it is because the business has kept us hopping for the past several months.  In this economy, I’m not complaining.  It also allowed The Bossman and me to take a much needed 5 day vacation to the Oregon Coast…Seaside to be exact.  Just he and I.  It was bliss.

The above picture was taken on one of our many drives.  I’m already to go back.  Taylor actually stayed with her sister so that was great.

Okay, so on to why my title is what it is.  Somehow I ended up following and reading a lot of blogs that involved children with Down’s Syndrome.  I think it’s because it’s the closet thing I can get to what Taylor has.  However, the only thing that really puts her in that group is an extra chromosome.  Taylor’s just happens to be #9.

Trisomy 9p is one of the rare chromosome syndromes.  So it’s not like I’m going to find a lot of bloggers with a child with the same diagnosis.  Then there is Taylor’s age.  She’s 21 years old.  She wasn’t supposed to live this long and I’m thankful every day that she’s here.  Yes were are dealing with new and serious health issues, but I’ve had her for 21 years.

I’ve tried to help out the blogs I follow with things I’ve learned in the long time I’ve been mom to a special needs child.  Sometimes I think I come across as a “know-it-all” and I am not. 

But I also realize that things change so quickly in the special needs world.  What was once standard procedure when Taylor was little is now considered outdated. 

Now I’m running into issues that never crossed my mind when Taylor was little.  The fact that my being her mother did not automatically let me make her medical and life decisions when she turned 18 was a surprise to me.  Spending over $1300 just for a court to say that my profoundly, developmentally disabled child was not capable of caring for herself therefore needed a legal guardian & that I needed to be approved for that role, shocked me. 

After 21 years of caring & loving my child, I now needed approval from the state?  Yep, you do.

I would give anything if I’d had access to computers & blogs when Taylor was little.  But that was in the “old days”. *laughs*  Please don’t think I feel sorry for myself or anything.  I just needed to get this out.  I think it was what was keeping me from blogging regularly and I miss that.

Also, if I follow your blog, please know that I always read them.  I may comment very infrequently but when I do, it’s because I feel like I can help or at least add to the dialogue.  I want my comments to be more than “oh, that’s a cute pic”.

I think I’m rambling now.  That’s what happens when you just start typing and letting all your pent up thoughts just blurt out with typed words.

And just because she’s cute, I’ll leave you with a picture of the reason I do blog…

What’s Been Going On

I guess it's time to update my blog and all my friends on what's been going on. I know I've been MIA lately. Everyone knows that The Bossman's mom passed away. I appreciate all your kind thoughts as does The Bossman. It meant a great deal to him.

The week after the funeral, I had to go to school and pick up Taylor. Of course she had a fever. It was 101 by the time I got there. She was also coughing a great deal. Now, when she left for school that morning, I hadn't heard a single sniffle, cough, or sneeze. I took her straight from school to the doctor. How can someone go from fine one minute to full blown pneumonia the next? I don't know why I act surprised, it's Taylor. That's what she does. Okay, I can handle taking care of Taylor, working, and trying to help The Bossman any way I can with his grief. I always wish I could say something profound that helps but all I can do is be there when he needs me to lean on.

However, 2 days after Taylor got sick, my throat started to hurt. Then my lymph nodes swelled up and my temperature spiked to 103. Yeah, just what I needed. The Bossman promptly (even though I didn't want to go, I don't argue with The Bossman) sent me off to Urgent Care. Sometimes it's annoying when he's right. I was thinking just a bad cold or something. Nope…I also had pneumonia complicated by my asthma and a viral infection of the throat. I can't remember the last time I was that sick. I just could not function. But we all know as mom's, we have to. The Bossman took care of the business…and wouldn't you just know that that week we got so many computers in, it was crazy.

I would feed and medicate Taylor, she would lay in her bed watching TV and looking at her car magazines and I would drag my body back to the couch. Of course, having a business out of your house means you can't be lying around sick in your pajamas so I had to lie around completely dressed. Not fun when your temperature goes up to 104. I had no voice so all I could do is gesture or write. The Bossman thought that was kind of fun because at night when we were watching TV, he'd talk to me and all I could was nod or smile. He said that was nice since he could say anything he wanted without any rebuttals from the peanut gallery.

Things are finally back to our normal. Taylor is back at school and so far so good…no calls. I am feeling almost 100%. I still have a lingering cough but with my asthma, that's normal. Now I'm just letting The Bossman sleep in while I take care of the office. He said we work in shifts. I have the early shift then he gets up and works until 2am. We are still busy as hell. There are so many computers in the shop right now that I've run out of room in our normal holding area…and it's big. In this economy though, we are doing very well and I am very thankful for that. People will come up with the money to fix their computers. I think sometimes they'll forgo food just so they can get on FaceBook, MySpace, or play WOW. Hey works for me. *laughs*

Hopefully I'll be able to catch up with everyone. I've started trying to leave comments on blogs. Bear with me as it might take me a bit.

*hugs to all my friends…I've missed you*

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.

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.