April 19, 2008 - Brianna has a cold

Well, Brianna has a horrible cold right now. Nose running constantly, eye buggers, fussy, and lots and lots of snot. Snot galore. Buckets of it. Never ending snot. But, she seems pretty happy. Peachy, actually.

Oh, and have I mentioned lately that she has developed a stubborn streak? Lately, when we go up for therapy at Shriner's, she has gotten very stubborn and contrary. You say "Go left", she goes right. You say, "Let's go down here...", she starts turning circles. You ask if she wants stickers, she goes to the fish, and vice versa. And she has a grin on her face the entire time. She deliberately runs into walls. She runs over feet. She follows people. She is so precocious! And I'm loving every minute of it.

When you've got a non-mobile, non-verbal child who doesn't seem to be outgrowing those baby looks, like Brianna, it's easy to forget that she is almost 3 years old. Most 3 year olds are showing their little personalities. But to me, Brianna has been eternally an infant. So when I see little snippets of her personality coming through, it's amazing to me. It reminds me just how wonderful and special she is.

Like, the other day...she was so quiet and calm, I fell asleep on the couch, watching cartoons with her. Next thing I know, she's shrieking happily...I look down, she had gotten into a bag of cotton balls and strewn them all over herself (I know, Melissa, you're probably cringing and shuddering right now). She had clothes all over herself. And she was absolutely thrilled. So, I couldn't be upset with her.

April 12, 2008 - The Story of Audrey Caroline

As mommy to a child with developmental disabilities, sometimes I become overwhelmed by all the facts, the diagnoses, the prognoses, the prescriptions, the therapies, etc. etc. etc. I forget what a blessing Brianna is to my life. Two things tonight have served to drive home just how special she is.

It's funny how something as simple as a television show can impact someone so much. I was watching the show "Secret Life of a Soccer Mom" on TLC. Tonight's episode featured a woman who, for the past six years, has stayed at home with her children, a daughter and a son. Her decision to be a stay at home mom came when she was five months pregnant and found out that her son would be born with Spina Bifida. To top it all off, she later found out that her son is mildly autistic.

This woman is amazing. Her son is on more medications than I ever want to see Brianna prescribed. It would be difficult enough to deal with the issues that come along with spina bifida. Trying to get a disabled child to do something in therapy, when they are tired, in pain, and fed up, is difficult enough. But you add on the added issues of autism, the behavioral issues, the ticks and quirks, and I'd probably tear out my hair. And she does it on her own. Her husband works constantly, leaving as early as 3am, and getting home, sometimes not until 8 or 9 pm. And yet, she gives props to single moms. She says she doesn't know how we do it. I don't know how she does it. I really don't.

Anyway, something she said during the show really impacted me. She said that, staying home with the kids, giving up her career, giving up a part of herself, in essence short changed her kids. In order to be the best mom she can be, she has to do things for herself, too. I know this is a concept that is constantly thrown out there for moms. But as a parent of a disabled child, you often feel as if you have to be there 100% of the time. This was an observation this woman made, as well as an observation I've made numerous times. It feels like a betrayal to leave Brianna in the care of someone else and go to work. Who's going to make sure she gets the exercises she needs? Who is going to cuddle her and soothe her when she has a retching spell or a seizure, or a noise startles her? Who is going to go to her appointments, her therapies, her classes? Who is going to be the voice for her and her needs, if I'm too busy working to speak up? And so, it's been easier to stay home with Brianna, to live, or rather, subsist, off of welfare and SSI. It's less scary. But the fact of the matter is, by staying home with Brianna, by not doing anything for me, by becoming a shadow of myself, I am doing neither of us a favor. Brianna will never learn to survive and thrive without me, if I don't give her the chance to learn. So, I'm going to look for work again. For certain this time. My baby is too important to me to continue living the way we have been.

The other event of tonight: I read a blog that a friend, Denise, posted a link to, and it absolutely broke my heart. Those of you familiar with Christian music might be familiar with the group, Selah. Well, one of the wife of one of the group members created a blog to chronicle the journey of her pregnancy with her daughter, Audrey Caroline. It's a bittersweet story, with a bittersweet ending. But it's threaded throughout with so much love for this child who, through her life and death, has touched the lives of so many others. Knowing that their daughter would probably not live, that the chances were so very slim, the Smiths still chose to carry her, to bear her, and to love her, as if she were not dying. As if, from her very conception, she was more than just their daughter. She was a miracle. The words to describe the impact of this story on me escape me. It's beautiful, and poignant, and my heart aches and lifts with the emotions. The most important thing it has shown me, though, is how very lucky I am to have Brianna with me. To be able to love her, and see her smile, and know that, thanks to God and the efforts of so many doctors, she is alive and with me, regardless of any disabilities she has. I am so very blessed by her, in so many ways.

April 8, 2008 - For Jessica

So, I haven't posted pics of Bri in her walkabout yet, and I've had them for a while. We finally got her walkabout today, but I haven't taken pics of it without her in it. These pics are from Feb. 28, when we were up there for therapy.

April 6, 2008 - I've HAD it!

Okay, I know I've been complaining about my sister a lot lately, but this time, seriously, I've about had it!

I tacked on $150 a month to her rent for groceries, toilet paper, soap, etc, because she wasn't helping buy anything. I told her before she got paid the time before last that she needed to buy toilet paper. She didn't. I ended up having to use money I had set aside for gas to buy tp, because she blew her check. So, she gripes and moans about having to pay $150 a month for that, saying I don't spend that much, and she wants to know how much of that $300 total a month I spend on stuff she doesn't use. So I told her, "Let's see...I bought a $10 pack of diapers, some deodorant, and tampons." But wait. She uses the deodorant and tampons because shes' too lazy to buy her own. So that means out of $300 worth of groceries and stuff this month, $10 was on stuff she won't use. If she gripes next month, she can buy her own darn soap, tp, deodorant, tampons, food, etc.

Okay, so that's not all. My sister has two jobs. One part time, one full time. She pulls in more money per month than I do, by far. But who do you think is always borrowing money from whom? And I have more bills to pay! I have $120 a month car insurance bill that she doesn't pay! I have other bills that she doesn't pay!

Oh, wait, it gets better. Sarah was scheduled to work from 8:30-4:30 on Saturday at the full time job, and from 5:00-10:00 at JC Penney. She went out partying on Friday night, and then called in sick to both jobs! Then, she showed up at home, showered, got dressed, and went out again at 8:30 last night! She was supposed to work from 8:30-4:30 again today. But she called in AGAIN! And now she's out SHOPPING! Did she bother to call me and let me know that she was okay? NO! Did she stop to think that, having not heard from her in 22 hours, I might be a bit worried? NO! I am just so SICK of her irresponsible, teenager attitude! If she calls in to work because she's hung over ONE MORE TIME, she's GONE! I'm serious. She can pack her sh*t and leave, and I'll throw a party in her wake!

I am SICK of cleaning up after her, cooking for her, doing her laundry, picking UP her laundry, throwing away her trash, supplying her every little need, loaning her money, then having her nit pick about just how much she OWES me, having her complain when I want to DO something. I mean, heaven FORBID I should ask her to watch Brianna for a night so I can go out and DO something anymore! The only time I get to go out anymore is if Mary takes Brianna, or if I pay a babysitter. And then, it's usually with my SISTER, because she doesn't think it's RIGHT for me to go out by myself, and considers it her duty to go out with me! I mean, yeah, it's nice to be able to hang out once in a while. But it's also nice to get out on my own and feel HUMAN. To go out on a date once in a while! I am just so completely SICK and TIRED of all this cr*p!

I'm dead serious. If she pulls a stunt like this just one more time, she's gone. I don't care if I have to scrimp and save every penny, or borrow from Mary or Damien to make ends meet. I'd rather do that and not have to deal with her antics. That is IT!

April 3, 2008 - Thinking About Becoming A Parent?

Thinking of Having Kids? Do this 11 step program first!

Lesson 1
1. Go to the grocery store.
2. Arrange to have your salary paid directly to their head office.
3. Go home.
4. Pick up the paper.
5. Read it for the last time.

Lesson 2
Before you finally go ahead and have children, find a couple who already are parents and berate them about their...

1. Methods of discipline.
2. Lack of patience.
3. Appallingly low tolerance levels.
4. Allowing their children to run wild.
5. Suggest ways in which they might improve their child's breastfeeding, sleep habits, toilet training, table manners, and overall behavior.

Enjoy it because it will be the last time in your life you will have all the answers.

Lesson 3
A really good way to discover how the nights might feel...

1. Get home from work and immediately begin walking around the living room from 5PM-10PM carrying a wet bag weighing approximately 8-12 pounds, with a radio turned to static (or some other obnoxious sound) playing loudly.
2. Eat cold food with one hand for dinner
3. At 10PM, put the bag gently down, set the alarm for midnight, and go to sleep.
4. Get up at 12 and walk around the living room again, with the bag, until 1AM.
5. Set the alarm for 3AM.
6. As you can't get back to sleep, get up at 2AM, make a drink and watch an infomercial.
7. Go to bed at 2:45AM.
8. Get up at 3AM when the alarm goes off.
9. Sing songs quietly in the dark until 4AM.
10. Get up. Make breakfast. Get ready for work and go to work (work hard and be productive)

Repeat steps 1-9 each night. Keep this up for 3-5 years. Look cheerful and together.

Lesson 4
Can you stand the mess children make? To find out...

1. Smear peanut butter onto the sofa and jam onto the curtains.
2. Hide a piece of raw chicken behind the stereo and leave it there all summer.
3. Stick your fingers in the flower bed.
4. Then rub them on the clean walls.
5. Take your favorite book, photo album, etc. Wreck it.
6. Spill milk on your new pillows. Cover the stains with crayons.

How does that look?

Lesson 5
Dressing small children is not as easy as it seems.

1. Buy an octopus and a small bag made out of loose mesh.
2. Attempt to put the octopus into the bag so that none of the arms hang out.

Time allowed for this - all morning.

Lesson 6
Forget the BMW and buy a mini-van. And don't think that you can leave it out in the driveway spotless and shining. Family cars don't look like that.

1. Buy a chocolate ice cream cone and put it in the glove compartment. Leave it there.
2. Get a dime. Stick it in the CD player.
3. Take a family size package of chocolate cookies. Mash them into the back seat. Sprinkle cheerios all over the floor, then smash them with your foot.
4. Run a garden rake along both sides of the car.

Lesson 7
Go to the local grocery store. Take with you the closest thing you can find to a pre-school child. (A full-grown goat is an excellent choice). If you intend to have more than one child, then definitely take more than one goat.

1. Buy your week's groceries without letting the goats out of your sight.
2. Pay for everything the goat eats or destroys.

Until you can easily accomplish this, do not even contemplate having children.

Lesson 8

1. Hollow out a melon.
2. Make a small hole in the side.
3. Suspend it from the ceiling and swing it from side to side.
4. Now get a bowl of soggy Cheerios and attempt to spoon them into the swaying melon by pretending to be an airplane.
5. Continue until half the Cheerios are gone.
6. Tip half into your lap. The other half, just throw up in the air.

You are now ready to feed a nine- month-old baby.

Lesson 9
Learn the names of every character from Sesame Street , Barney, Disney, theT eletubbies, and Pokemon. Watch nothing else on TV but PBS, the Disney channel or Noggin for at least five years. (I know, you're thinking What's 'Noggin'?) Exactly the point.

Lesson 10
Make a recording of Fran Drescher saying 'mommy' repeatedly. (Important: no more than a four second delay between each 'mommy'; occasional crescendo to the level of a supersonic jet is required). Play this tape in your car everywhereyou go for the next four years.

You are now ready to take a long trip with a toddler.

Lesson 11
Start talking to an adult of your choice. Have someone else continually tug on your skirt hem, shirt- sleeve, or elbow while playing the 'mommy' tape made from Lesson 10 above.

You are now ready to have a conversation with an adult while there is a child in the room.