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.

Sharing More of My Life

It's been awhile since I updated. Things here have been a bit hectic. Thankfully Taylor is doing much better and she has been fever free for almost 24 hours. If she stays fever free that means school tomorrow!!!

Most of my friends know that The Bossman (my BF) and I run a business from our home. He's been doing computer repair in our town for many years, just for another company. We recently celebrated out 1 year in business anniversary this past July. It is a very successful business and I love working with him. I am definitely learning to get my geek on.

Anyway, yesterday was "totally weird customer" day. Most of our customers know The Bossman because he also teaches computer classes at the local community college. However, we do get our share of customers that just walk in off the street. Some of them defy description. They bring in computers that are running Windows operating systems from the early 90s. They get really upset when we tell them that Windows doesn't support Windows 3.1 anymore.

I thought this post should be a little more about my daily life instead of just all the bad news about Taylor. While this blog will still focus on life with Taylor, I just decided to start sharing a little bit more of my day to day life.

What a 2 Weeks!

The past 2 weeks have seemed like a comedy of errors. So, we thought Taylor came through her surgery without any major issues. For the most part, she did. The pain medicine turned her from Princess Jekyll to Princess Hyde, but that was manageable. I'm not really sure why she reacted to the medicine this time as Taylor has had a lot of surgeries and painful procedures and been on strong narcotics before and not had any issues.

Then, we thought she was coming down with a cold this past weekend, so I took her to Urgent Care. They decided, after a chest x-ray, that she had a partially collapsed lung (not serious enough for chest tubes thank goodness) and the beginnings of bronchitis. We treated those symptoms with antibiotics. She seemed good to go with no fever for over 24 hours so I decided to let her go to school on Wednesday since it was early release anyway.

She seemed a little tired when she came home from school but nothing major. She did go to bed and actually fall asleep earlier than she usually does. Normally, I put her to bed, which means I give her snack and put her in her room where she will play until she falls asleep somewhere between 9 and 10:30pm. She is good about staying in her room unless she needs to use the restroom.

I always fall asleep on the couch while my better half works on computers until about 1 am or so at which time he'll wake me up and we go to bed. We happen to run a very successful computer repair business out of or home. He is very well known in our little town. Paul wasn't feeling well either so he had gone to bed at 10:30 so I just stayed on the couch. At about 2:30am, I woke up to the sound of Taylor coughing so bad I expected to see a lung when I went in her room.

I took her temperature and it was 102.4. Thursday morning, I called the family doctor and he saw her at 4. I was so not ready for a diagnosis of Swine Flu. I mean…really? Apparently, just as a precaution, when we were in Urgent Care Sunday, they had the IV nurse take a blood sample from her port and they also did a throat swab. I thought they were checking for Strep or something.

However, unbeknownst to me, they also were testing for the H1N1 virus. I'm guessing it was just an oversight that they didn't tell me because the doctors in the Urgent Care know Taylor very well and they are good with her and they always tell me what they are doing.

Her family doctor looked at the test results and told us about the Swine Flu. Apparently now, Taylor is the first one in the high school to have the swine flu so she is the wonderful reason for hundreds of those "a case of H1N1 virus has been diagnosed in the school so…" letters going out to all the parents. Yes, my child is special.

This flu is really kicking her butt. She was up most of the night either coughing or being really whiney because of body aches. It's really hard to know what hurts because she can't tell me. I just have to know the difference between a "pain" noise and a "I'm crabby leave me alone" noise.

She is spending most of the day in her room watching TV and reading her car magazines. She comes occasionally to throw her tub toys over the shower curtain and into the tub, then goes right back to her bed. I'll have to do a post on her obsession with throwing plastic toys into an empty bathtub.

Wow…this post ended up longer than I thought. I think I'm going to put my head on my desk ignore customers at the door…well, not really but it sounds good.

Sort of Wordless Wednesday

My daughter got a job yesterday…starting today. She is working with developmentally disabled adults. Hmm…wonder what experience she has. *smiles* Anyway, I'm watching my 2 year old granddaughter until she can work out daycare. My grandson is in school. I work as well so it's hard for me to watch them all the time. Ally and her Aunt TayTay are basically at the same age level. However, this is Taylor's room and Taylor's computer and Taylor's Sesame Street Toddler computer game. Now while she'll turn it on and let Ally play, even giving up her chair, she will not let Ally have control of the mouse.

Still, they play very well together…it just reminds me of David and Goliath, just with a nicer outcome. Wonder why? I find these pictures to be totally precious and decided to share them straight off my camera without editing.