May 26, 2008 - Video of Brianna Laughing

Here's the video my sister took of Brianna laughingon her birthday. She was so excited all day, she KNEW it was a special day!

May 25, 2008 - Happy Birthday Brianna!

Well, Brianna turned three on Friday. We celebrated tonight, since Mary was in Wisconsin until last night. It was a good birthday for her. On the day before her birthday, we got Brianna's new Rifton bath chair delivered. It had been sitting in the medical supply company's office for a couple weeks, I guess, because they couldn't track us down. Yeah. That's how long it takes to get approval from insurance. We moved to our new apartment March 20th. And the address on the forms was our old one. So, yeah. It's been a while. But some things take longer. That day, we also got a call to let us know that Brianna's wheelchair is almost ready. It will take about three more weeks, because they have to wait for final approval from the insurance company, which takes 2-3 weeks. Then, I'll be posting pics of Brianna in her pretty purple wheelchair.

On her actual birthday, Brianna had fun. She went to daycare, where they sang "Happy Birthday" to her all day. Then, on the way home, she was roaring at me from the back seat. Later in the evening, she got to talk on the phone with Grammy Mary, who was in Wisconsin visiting her mother for two weeks; and she got to talk to Gramma Betty and Grampa Allen. All that talking on the phone got her really excited, and she spent the rest of the evening squealing and propelling herself back and forth across the living room floor. Then came bath time with her new bath chair. When I got her naked for her bath, she got even MORE excited. Her Auntie Sarah got some great video with her phone of Brianna squealing, arching and flopping, but I have to look at it to make sure it isn't x-rated, since Brianna WAS naked.

On Saturday, we went over to Grammy and Bobo's to do some cleaning (since Bobo has been home alone for two weeks...we expected the house to be a mess...it was surprisingly clean!) and some laundry. I had a pleasant surprise when I checked my bank account, because my state income tax was finally deposited in my account. So we went shopping. Got some groceries. I got some new bedding for my bed, some new sheets, a new bedskirt, and an embroidered quilt, since the weather is warming up, and a comforter is becoming too heavy. After shopping, we came home, and I barbecued and made cupcakes for the neighbor kids, who, by the time they were done, had to go inside for the night. Then, after Brianna went to bed, I set about making her teddy bear cake. It turned out great, and was really yummy.

For her birthday, Brianna got lots of clothes, both from me and from Grammy. She got a cute little sporty outfit from Damien, and she got a rocking horse that sings "Home on the Range" from Grammy. From Gramma Dorothy (Mary's Mom), Brianna got a necklace with a birthstone angel pendant attached. It's a bit big for her, but we can either get another chain for it, or save it until she is older.

All in all, Bri is doing well so far. She's still her contrary self, running into walls with her power chair, turning circles, and going into unauthorized places. But she's happy as can be, so we can't really get mad at her.

May 3, 2008 - 50 Steps!

Okay, update time!

In the past two weeks, there's been quite a bit happening. First of all, Brianna started back at daycare again, so that I can look for work. So far, there've been no interviews or anything yet. But I'm still looking. Brianna does well at daycare, but when I drop her off, she has to do the token fussing and resisting to remind me that I had better come back for her. But as soon as that door is shut behind me, she's happy as a clam. It's like a light switch. Seriously, that fast. No real tears, even.

In therapy, Brianna has been developing a distinctively stubborn and contrary streak, especially when we have occupational therapy at Shriner's. Whether we have OT or PT, Brianna always spends some time driving in the power chair. When we have OT and put her in it, she absolutely HATES to go any direction you tell her to. Ask her to go straight, she turns circles. Say, "Let's go get stickers", she goes to look at the fish. Say, "Let's go look at the fish", she goes towards the sky bridge. If she hears the elevator, she tries to get on it. If she sees a door open, she wants to go through it. Voices are another adventure for her. She'll go anywhere she hears voices. She runs into walls, just for the fun of it. "Authorized personnel only" signs hold no meaning for her. Nor do the words, "Stop" or "Let's go..." And the entire time she is contradicting every word you say to her, she has a great big grin on her face!

Now, in contrast, when we have PT, Brianna is a perfect angel. She drives in straight lines, with minimal crashes into walls or doorways. You say, "Let's go get stickers", and not only does she go to the room, but she does her little circle to turn around and see the stickers, WITHOUT trying to go into the central supply room first! She just tools up and down those halls, as sweet as can be, happy as a clam, minding everything Molly says. Of course, as soon as Denee, the OT, shows up, which she does if she has spare time during our therapy hour, Brianna starts being a little stinker again. And I know it isn't because she dislikes either one of them. She loves them both! She immediately gets full of smiles when she sees either one of them. I think it's just because Denee gives her a little more freedom than Molly does, maybe. When Bri drives with the PT, often Molly will walk along behind, with her hands on the handles, that way she can easily correct if Brianna needs the help. There is no guiding the chair with the handles while it is in drive. It's too heavy. So I know that it isn't Molly keeping Brianna straight through her own force. In contrast, when Denee puts Bri in the chair, she walks along side, or a couple feet behind, so she's a few steps away, close enough to reach if necessary, but far enough away that Brianna doesn't feel like she's being crowded or pushed. It's amazing to compare their different styles of teaching and therapy.

Now, as for the title of this thread...Yes, it means Brianna took about 50 steps! In PT on Thursday, Brianna was NOT a happy camper in her walkabout. She just couldn't seem to get that right leg to do what she wanted it to, so she was standing still quite a bit. So, Molly took Brianna out of the walkabout, and just held her under the arms. And Brianna walked about 25-30 steps away from me that way. Then she walked back to me that way. It was amazing! She was so happy, and you could tell from her grin and the happy sounds she was making that she was proud of herself! She was awesome! I wish I would have remembered to bring my camera. From now on, I do not go to therapy without it. There are too many important milestones that I might miss if I don't have my camera.

Anyway, it's late now, and I'm tired, so I'm going to end this entry here. I'll update on Brianna's progress in speech therapy tomorrow or the next day.

Oh, and Damien, we haven't seen you in a while, but I know you're probably reading, and I wanted to let you know that any time you want to see Bri or spend time with her, all you have to do is let me know. You're more than welcome to come see her, or keep her overnight, or even just for a couple hours, if you want to. All ya have to do is ask.

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!