Perfection is in the Eyes of the Beholder

To say that I'm not religious would be an understatement. However, I do believe in God. When Taylor was born I was attending the church of her father (my ex-husband now) and it was a fundamentalist, Pentecostal church. While I was going through everything with Taylor, I had several members of the church tell me that I wasn't praying hard enough or didn't have enough faith and that was why Taylor wasn't "made whole & normal". Thankfully, the majority of the people were not like that, but those few are what started my questioning of the whole religious thing.

I came across this poem on someone's blog and saved it awhile ago. Today, I thought I would post it here because regardless of what you believe, I think it touches "something" inside. Yes, it made me cry but then anything like this usually does. Taylor is eternal innocence and I just wanted to share.

"As a small group of political and church leaders look on,

Jesus lifts a mentally handicapped child out of her chair kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?

I could do it; but I will not.

I am the Lord and not a conjurer.

I gave this mite a gift I denied all of you -- eternal innocence.

To you she looks imperfect

But to me she is flawless,

Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the work of {my} hands.

She is necessary to you.

She will evoke the kindness that will keep you human.

Her infirmity will prompt you to gratitude for your own good fortune...More!

She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.

You have not chosen me.

This little one is my sign to you.

Treasure her!"

Waiting

Today was Taylor's echocardiogram and I will admit to wanting to know how her valve looks. However, I couldn't really tell you why I thought I would find something out today. The Bossman would just laugh and say something sarcastic about my brain…or lack thereof.

Anyway, the technicians never tell you anything. I think they take a class specifically on how to not change their demeanor no matter what they see. I now have to wait 10 days until Taylor sees her cardiologist on the 30^th.

I think I'm just a little anxious because there are some changes going on with Taylor that no one can seem to come up with a reason for. She has some discolorations of her fingers and toes but Taylor doesn't have great circulation to begin with so it could be totally unrelated to her heart. Her left foot has been swollen for over a year and no one can figure out why. At first they thought gout. Gout? In an 18 year old…obviously that wasn't it. They've take x-rays and now the swelling is moving up past her ankle. She takes her shoes off the minute she gets home. I've been lucky enough to have a couple of pair of low-top converse for her…they seem to stretch.

I have no clue if all these other symptoms going on have anything to do with her heart. I honestly hope they aren't. Of course, that means starting from scratch to see what else is going on. Part of me wonders if it even matters anymore. If it's a matter of life and death, absolutely I'll make the decisions that need to be made. I just don't want to put her through things that won't help.

Taylor is a very happy, affectionate, loving, "little girl". I want her to spend her time doing those things that she enjoys…that's what gives Taylor her good quality of life.

So now the 10 wait commences. Thanks to all my friends for their good thoughts today.

Frustration

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.

Gum…The New Asthma Medicine.

Has it only been 3 days since I last posted? It feels like a month. Today has been the first day Taylor has been fever free, so it looks like she will be able to go back to school tomorrow. It's been a rough week. Taylor just doesn't do well when she is sick. She doesn't understand taking it easy and she would rather go to school, sick or not.

The Bossman has been sick for over a week as well and I thought it was going to bypass me, but apparently not. I have really bad asthma and last night at around 10 or so, I could feel one coming on. I did the inhaler & nebulizer stuff but it just wasn't helping. Once I start coughing, I can't seem to stop. I have been hospitalized several times for my asthma. I usually have a good experience as far as any ER experience can be good.

However last night was not a good experience. I actually had the doctor tell me to try chewing gum to stop coughing. Yes, really…gum. We got the wheezing under control by several nebulizer treatments using a stronger medicine than I have at home. As far as my coughing goes, not so much. I have Delsym at home and sometimes it will help but not so much last night. In case you didn't know, Delsym is an over the counter cough syrup consisting of nothing other than dextromethrophan …you know…the same stuff in Robitussin. The only difference is that the Delsym is in a suspension form. It's supposed to make it last longer. Now this doctor tried to tell me that Delsym is a narcotic. Seriously? What narcotic can you buy over the counter at Wal-Mart. When I mentioned it's an otc, he said, "well, it tricks your brain into thinking it's a narcotic". Yeah, okay…whatever. I swear, he made me feel like I was a drug-seeking fiend. All I wanted was to stop coughing. Every nurse that came in the room kept telling me that my cough was making their chest hurt. Imagine how it made mine.

I suppose I'm done ranting. I'm feeling like crap today, but I'm hoping it's a quickie sickness and not some drawn out flu or anything. I don't have time for that. Taylor has her echocardiogram on Thursday and then her cardiology appointment in 2 weeks. Hopefully her aortic stenosis will not have advanced any farther. I am just not ready to be making valve replacement surgery decisions.

I have many blogs to catch up on and hopefully my internet friends will understand my absence. I have just been too busy and/or tired to sit at the computer any longer than I have to. Right now, I'm enjoying listening to this wild wind that is blowing outside. We've had gusts up to 25 – 30 miles per hour. I love the wind, so I'm going to go snuggle on the couch, watch TV and listen to the wind.

Yes I Did…Just Have a Pity Party

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 it is 2am on Friday morning and I'm sitting up because I'm scared to go to sleep. Taylor's fever is 103.5 right now and she is very "out of it". I know she is the one that is sick. She is the one that has to deal with feeling bad, but right now, I'm just very tired.

Yes I am having a moment of feeling sorry for myself. At least that's what I think I'm feeling. Right now, at this very moment, I wish I had a "normal" child. I wish I had a child who could tell me exactly how she is feeling. I wish I had a child that didn't have seizures. I wish I could trade the worries I have right now with the worries of…is she passing her college classes, do I like the boy she is dating, is she practicing safe sex.

My "Yes I Did Friday" post is just one big old poor me post and I apologize ahead of time to everyone. Maybe it's the lateness of the hour, or earliness depending on your perspective. Maybe it's that I'm tired and I just wanted to sleep in my own bed and not the lumpy couch that always sucks my butt in between the 2 cushions, forcing me into a V shape.

Yes I Did force you, my fellow readers to participate in my surprise pity party. Awww…screw it. I'm done already. I've given Taylor some medicine and I'm going to go do some mindless infomercial surfing, unless I get lucky and find an interesting show to watch in the middle of the Snuggie and Obama Chia Pet commercials.

Thank you for letting me vent and get it all out of my system. I promise I only have moments of self pity and I try to make them few and far between.

I think I need an AP & Nikki B intervention! They make me laugh.

Conundrum, Thy Name is Taylor

Taylor after her PICC line placement (before the port)

I'm going to whine for a few minutes. Well, maybe it isn't whining as much as it is complaining. Yesterday was a rough seizure day for Taylor. Okay, I can handle that. That is nothing new for us. A good seizure day is less than 50 a day, so seizure free isn't in our vocabulary.

Anyway, Taylor wakes up at 3 am coughing with a temperature of 101.5. Fine…I can tell this is going to be a rough winter. Taylor alternates. We have good winters and bad ones. This is shaping up to be a rough one. I'm assuming it can't be the flu because we've already been there, done that a few months ago.

I take her to the doctor and he says…she has the flu. What? I mention that he diagnosed her with the H1N1 flu back in September. Now, don't get me wrong, I love our doctor. He does the best he can with Taylor and that's all I can ask for. The Trisomy 9p throws most of the doctors off. However, I'm expecting him to come up with something other than the flu…a cold maybe? He says to me, well, she either had the flu back in September and she doesn't now or she has the flu now and she didn't back in September. Yeah…I'm guessing your faces are probably looking like mine did.

We are treating her for the flu again. But guess what? The insurance won't pay for the Tamiflu because she's already had the flu and so she shouldn't need Tamilflu again. Whatever. I'm just going to treat her symptoms and see if she gets better. If she doesn't, then we'll know she needs something else.

On a side note, Taylor was born with a heart defect. She had a VSD but luckily it closed on its own when she was 6 months old. She also has a bicuspid aortic valve with aortic stenosis. Now this defect ended up being the least of her issues but as she has gotten older it's starting to cause some problems. Her doctor did notice her fingertips were a little blue and her lips were not pink…but they weren't blue either. They were sort of in-between.

I told the doctor that she has an echo cardiogram in a couple of weeks and she sees the cardiologist on November 30^th. To be honest, the doctors told us that Taylor wouldn't live long enough for her heart valve to become an issue. Well…she decided to prove them wrong and now that she is 20, it looks like a valve replacement will be in her future…again, if she hangs around for awhile longer.

Taylor is stubborn and she is having way too much fun in her life and I can just see her giving the finger to all those doctors that tried to write her off. I sometimes think she wishes she could just say a big "F**K YOU" to all those people that said she would never see her 1^st birthday. I love that girl more than I could ever find the words for.

Sometimes…& Seizures Suck!

I got my first blog award. Thanks Jennifer. I know that I blog as a way to vent and I do hope that what I write can be of help to others but I will admit that there is also a part of me that likes it when I know people are reading my blog. I like to get comments. While that isn't the sole purpose of blogging, I would be lying if I said I could care less whether anyone comments…I do.

Today has been a rough day here. Taylor has been on the new seizure med Banzel since Thursday night. I know that it hasn't had a chance to build up in her system but I sure hope it will hurry up and help. The school called today and I had to go pick Taylor up. She was seizing too much for them to handle. Taylor had over 40 seizures in 20 minutes. The teacher/aides are very good about writing down every seizure and the time and the poor lady was carrying around a piece of paper trying to keep track.

She came home and has been seizing like crazy. She's had some serious drop seizures. There's a second nature to Taylor. I think she has an aura or something because she'll be standing there and then all of a sudden reach for the wall/chair/person…whatever she can grab to hold on to a second before she would have fallen due to a seizure.

Probably 3 – 4 years ago, I would have packed her off to the ER for IV Ativan to try and slow down her seizure activity. Now, I just don't see the need. Her seizures are uncontrolled…I know that. I just don't want to fill up her time with short acting medicines and needles (even if she does have a port).

Sometimes I feel like I've given up on her. Sometimes I second guess my decisions and wonder if I'm doing what's best for her. I hate those feelings. I feel that I'm making the best decisions I know how to make for Taylor but I guess only time will tell if I've chosen correctly or wisely.

There are no absolutes when it comes to treatment for Taylor. I just know she is much happier throwing her toys into the bathtub than she would be, in the hospital, hooked up to an IV being pumped full of a barbiturate.

The rules state that I get to pass this along to 15 other newly discovered blogs that I love. Should any of you choose to accept this mission…post it on your blog together with the name of the person who has granted the award, and his or her blog link. Pass the award to 15 other blogs that you’ve newly discovered. Remember to contact the blogger to let them know they have been chosen for this award. I don’t have 15 blogs to pass it on to, but I am going to pick those blogs that I think rock! Please check them out, they are great reads.
1. Blogzilly
2. ConlonClan
3. Model Trains – A Hobby Revisited
4. Lila’s Miracle Life
5. The Bates Motel
6. Rissa Roo & Her Family Too
7. Lia Joy
8. Paisley Place
9. Alabama Slacker Mama
10. Anemone Pie
11. Colton’s Journey