I Just Needed…

I've taken a little break from being online when I'm not working. I haven't written a post in awhile. I just needed the break. I needed to spend time reading my new book, "The Lost Symbol"…yes, it's a fabulous read.

I needed time to help the Bossman with his hobby, model trains. We had fun gluing the Styrofoam for the base of the mountain. I needed some time to play with my grandkids and have lunches with my daughter "B". I needed time to sit and snuggle with Taylor and watch her be silly. I needed to lay on her bed and watch her laugh hysterically at some new show she found on Nick Jr called "The Upside Down Show". If it has "slapsticky" type humor, Taylor laughs.

I just needed some time to enjoy the fact that Taylor isn't sick. Seizing? Always…but not sick. I needed some time to do nothing…to engage no one except the Man I love & the rest my family.

I just needed a break.

I will be posting a "Yes I Did" post tomorrow. After that, I'm going to try and introduce everyone to Taylor by catching her on video. I hope all my friends are doing well and I will be catching up on your blogs…I promise.

Thank you Won for checking on me. It meant a great deal more than I can explain.

The Rest of the Story

Taylor the "Dog Whisperer".

Obviously, I've known about the "Trip to Holland" story that most parents of special needs kids get from someone after their child is diagnosed/born. However, I hadn't realized that there were other parts to it.

A new friend pulled a Paul Harvey on me and sent me "the rest of the story". Thanks Won…you made me cry. Good tears though. There was one part that just seemed to catch my heart.

"So many people think that they are the only one that arrived in Holland against their will, but there are more people than you might think, that have arrived unexpectedly. Too many look, yet only really see their own situation, but if you open your eyes and really see, you will find most everyone has visited some part of Holland at some time in their life. And when they want to find a quiet place of connection, many return here."

I have found that to be so true. There are times when I am so absorbed in what Taylor and I are going through, that I forget there are others that have walked in my shoes to some degree. I have never thought that my situation was worse than anyone else's. I guess I just didn't realize that there are more people who can understand my emotions if I just open my eyes and heart and let them in.

Thank you again Won for sharing that with me. I don't think I could ever find the words to tell you how much it meant.

Yes I Did!

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

"Yes I Did" ignore my daughter's phone call. I have specific ring tones for my daughters, click here to see how appropriate it is for them. Anyway, when I heard it, even though I knew my daughter was having a particularly rough day, I didn't answer it. I needed 10 minutes of peace. However, mom guilt kicked in and I called her back in 5 minutes. I do love her…honestly I do.

"Yes I Did" tell a customer to take their computer somewhere else to be fixed because he was being obnoxious. My man is a well-known and very trusted as a computer repair guy here in our town. We are so busy right now that I don't need to burden him with annoying customers.

"Yes I Did" listen in to a conversation in the doctor's office (well, you can't help it when you are sitting right next to people and they are talking loud). This family was trying to figure out what a certain drug was. You know I'm "almost a doctor" because of Taylor (inside joke certain people will get), I told them what the medicine was generally used for and then told them to discuss the side effects with the doctor.

What "Yes I Did" moments did you have this week? Join in…you'll have fun.

Trisomy What?

Taylor @ 2 years old, 3 weeks after her diagnosis.

There seems to be an "Awareness" month for just about everything. Last month was Pediatric Cancer Awareness month. This month is Down Syndrome Awareness month. We have Black History month, Breast Cancer Awareness month…the list goes on and on.

Now don't get me wrong. I have nothing against "awareness" months. Unfortunately, my daughter has such a rare syndrome that she doesn't have a month. Well, actually she sort of does if we lived in Alaska.

Taylor has Trisomy 9p. I suppose we could tag along with the Down Syndrome Awareness month since Down Syndrome is technically called Trisomy 21. They both involve having an extra chromosome. It's amazing what having just one extra chromosome will do. In Taylor's case, it isn't even a whole chromosome…it's just having the extra p portion of the 9^th chromosome…which makes it even more rare than if she had the whole extra chromosome.

I hope no one takes this entry as me complaining about not having a month. This is just my nod to those of us with kids who don't have a popular or common syndrome. We don't have a colored ribbon we can put on our blogs or a celebrity spokesperson raising awareness. We get to do that ourselves.

What we do have is a close-knit community of parents who understand that we don't have anyone that understands exactly but each other. Taylor was diagnosed when she was 2 years old. Up until that time, we were out in limbo land. When we got the diagnosis, there wasn't sadness. There was relief. Finally we had a name. I guess when you know something is wrong with your child, it's no longer about hoping the tests are negative and more about hoping it gives you a name.

For those parents who have children that have any of the above conditions, please know that I'm not making light of them. These were just my thoughts for the day. My Taylor always has to be different and she just couldn't have a well known syndrome…she had to go for the rare.

Developing a Thick Skin

I've had this topic on my mind for a few days but I wasn't quite sure how to word it. I was reading a comment on a forum written by a mom whose daughter had a birthmark on her face. She was upset that someone had thought to use that situation as an example of a distraction in a school setting. I'm not going to address that particular situation, just what it made me think about.

I'm sure that what I'm going to write about isn't considered politically correct and it may even upset other mothers of special needs kids. However, it's just something I feel led to write. Taylor doesn't look "normal" and she never has. Even when she was little you could always tell there was something different about her. As Taylor was growing up, we dealt with stares and rude comments and I will admit that my feelings would be hurt a lot. I would get angry and lash out at the insensitive or unfeeling person. Of course, it never made me feel any better but I always thought I needed to be outraged on Taylor's behalf because she didn't know enough to "feel the slight". So I felt it for her.

As the years have gone by, I realize that my desire to strike back at rude people has waned. I have read the blogs of some parents with disabled children in wheelchairs who watch for people that park in the handicapped parking spots. Even if these people have placards, this mother will say something if the person doesn't appear to be visibly disabled. I have a placard for Taylor. Is she in a wheelchair? No. So by that mother's standards, I shouldn't park there. To her, my daughter having seizures every few minutes in a parking lot shouldn't mean that we get to park closer. Are there people who park in handicapped spots illegally? Of course…but to demand everyone "look" disabled is ridiculous and shows that ignorance can be found anywhere.

I guess my point for writing this is that after 20 years, I've developed a thick skin. Maybe if my daughter could have hurt feelings or understood things, I would think differently. But she can't. So why should I waste one second on a negative emotion when I can just focus on the silly, happy, child that Taylor is. There are always going to be ignorant and rude people. Don't get me wrong. If someone is just downright ugly about Taylor right to my face, then yes, I will say something, but i've learned to let the negativity roll off my back.

I hope that I've worded this post in a way that people understand what I mean. Taylor doesn't need me to be outraged on her behalf. She doesn't give a rat's ass…so neither do I.

Take a Guess!

This is my youngest granddaughter Ally. She is a gorgeous little red-headed angel. Okay, I'm Nana, so I can fib a little. While she is precious and I love her beyond words, she does have the temperament that goes along with the red hair. This is a picture her mother, my middle daughter, took of her.

I took this next picture of her after she put on my glasses. I want to know if anyone else can tell me the movie character she looks like. I don't have anything to give away, but I would love for you to leave a comment letting me know what character you think she looks like. I know who I think she looks like. *laughs*

Yes I Did!

Jeanette started "Yes I Did!" Fridays.

Friday is the day to fess up to doing something that didn't exactly make us the brightest crayon in the box. To own the things we knew we shouldn't have done, but did anyway. Or to share something that we are proud of ourselves for accomplishing! So here is what I DID do this week…

I couldn't figure out how to start this post so I absolutely "borrowed" the above paragraph from Jeanette's blog. Okay, so maybe stealing would be a better word, but Yes I Did!

I most certainly DID tell my grandkids that the Nick Jr channel was going to sleep because it was the opening night of the NHL season and my favorite team was playing. I just had to change the channel. Of course, karma bit me in the butt as my team lost.

I let Taylor eat Apple Jacks for dinner the other night because there wasn't anything else she wanted. I didn't even put flaxseed on it or use organic milk.

I totally lost track of the fact that our business (home) opens at 9am and I was still in my pajamas when a customer came to the door. Good thing I'm a fast dresser.

I also spent so much time reading posts at OHIH, that I got behind in all my other work.

I'm positive that there are many other things I've done this past week that would qualify for this post but I just can't seem to remember them. It would appear that I'm going to have to start writing things down as they happen next week.