October 17/18, 2008 - Peek-a-Boo!

Okay, so it's time for an update, I guess. Gotta keep my readers reading, right? But, I'm kinda worn out tonight, so am just going to jump right in with the most recent events, then back track at a later date.

Brianna had a feeding clinic appointment on Tuesday. She really hasn't gained much weight in the past four months or so. And since she's been retching and we've had to decrease her rate of flow on the feeding pump significantly, we can't really increase it again. We've tried, and she just gets really irritable and her tummy gets upset. So, the dietician is having us add Duocal to her formula to increase her caloric intake. So far, she seems to be tolerating it fairly well, with only a slight increase in the retching. We've also doubled her Reglan dose, to help speed the formula through her system, in hopes of cutting down on those early morning and late evening retching episodes. So hopefully, between the two, we can get Bri gaining weight good here soon. As long as she doesn't hit 30 lbs. within the next month....4 lbs. is a bit too much of a weight gain.

Other than the feeding clinic appointment, there's not a lot new here. Bri's babysitter is sick with the flu and pink eye, and her doctor told her she's highly contagious, so, since my sister isn't returning my calls or text messages (gee, how nice....really shows I can count on her...), I'm going to have to call in to work tomorrow. Mary is in Wisconsin, because her mom passed away, and she's getting everything organized there. Damien was in Wisconsin for the funeral, but I don't know if he's back yet or not, and I'd really rather not have to call him, since it feels like such a burden when I do. He's got better things to do anymore. So, unless my sister grows up and returns my phone calls, proving she can be counted on when I need her, then, I get a three day weekend.

You know the ironic thing about my sister's attitude? Just a few weeks ago, she was wanting me to pull Bri out of daycare and get rid of the weekend sitter, so she (my sister) could watch Bri full time and make the $1500 a month that goes to the two sitters. (Yes, you read that right, $1500 a month. I pay $425 a month for childcare, and then a program called Inclusive Childcare pays an additional $1000 a month, give or take, for Brianna, because she requires so much more care than a typical toddler.) But, I didn't pull Bri out, because I didn't think my sister would be reliable. I thought she'd get sick of it before long, and leave me in the lurch, like she has done so many times in the past. And here she is now, my only back up, who swore she would watch Bri any time I needed her to, and she refuses to even return my calls to say she can't watch Bri. Instead, she takes the cowards' way, and ignores me. Scary thing is, though, last night, I tried to call her because I was really drowsy on my way home from work. I had seen the doctor and been prescribed some meds, and they made me drowsy. I was driving from work to daycare to pick up Brianna, and I couldn't focus, and felt really bad. So I tried to call my sister, who lives just blocks away from daycare, to see if she could come drive me home. But, she didn't answer, and didn't return my call or my message. So, I ended up driving home myself, windows down for the cold air, about 10 mph below the speed limit, scared out of my mind that I'd fall asleep at the wheel and hurt my baby again.

Okay, so, reading all of this, my anger at my sister seems pretty ridiculous. But, I can't help but be angry. I'm supposed to be able to count on her. She came to Oregon to be a help to me, to lend a hand when needed. But now that she's got a new boyfriend, has a new job, is going to school, and lives elsewhere, she can't be bothered to even return a phone call. Nevermind the thought of asking her to go to lunch or something. Unless alcohol is involved. I feel as if she can't spare the time for family, she's so wrapped up in her boyfriend. And he's a nice guy. But he's the first one to encourage her to talk to me, to help out, to step up and all that. It isn't him that's doing it, at all. It's her.

Anyway, I think it's the drowsiness from my meds starting to talk now, so I'm going to sign off for now. Otherwise I'm going to start typing real gibberish.

September 20, 2008 - Brianna Plays "Dress Up"

In our living room, which is a horrible mess, underneath the coffee table, I keep a bunch of Bri's clothes. Mostly jammies, stretch pants, and a couple onesies, usually. It started out of sheer laziness, and me absolutely hating walking up my incredibly steep stairs, which I've fallen down numerous times, both by myself and while holding Bri. So, practicality, too. Brianna was puking all over her clothes fairly regularly, and I hated making 20 trips up and down stairs each day. It was bad enough having to walk upstairs to use the toilet in our 2 bedroom.

Anyway, later, when we started speech therapy at Shriner's, the clothes under the table became a way for Brianna to choose what she wants to wear....I'd give her a choice between two outfits....the one she didn't want to wear, went under the table to be an option the next day. Of course, clothes would pile up....I hate housework, and I work full time.

One article of clothing that has remained under the coffee table for months now is the skirt that you see on Bri's left arm in the picture above. Being size 18 months, the skirt is much too short for Bri to wear anymore, but, it seems to be her favorite article of clothing, because every day, she pulls that skirt out from under the coffee table, and she puts it on her left arm. The skirt is soon followed by her Pirate Dora nightgown, which she drapes over her tummy. This might be followed by a bright pair of jammie pants, or, as was the case yesterday, a pair of jeans draped over her face.

Thus, you have Brianna's version of playing dress up. On occasion, she'll drag every single article of clothing under that coffee table out, and she'll have herself buried in all of it, at which point, she starts either shrieking with laughter, or fussing because she can't see and can't get out. Either way, you can't help but laugh and be absolutely thrilled when she does something that is so typical of a three year old girl.

Note the Dora nightgown in her left hand in the picture below, and the dark denim jeans beside her. It didn't take long before those jeans were draped over her chest.

August 29, 2008 - Finally finishing my Updating!

So, Brianna has been going to Shriner's Hospital for almost a year now for therapy. She was receiving speech therapy 2x a month, and OT and/or PT once a week. At the beginning of August, Brianna's speech therapist moved to Texas, where her husband received a scholarship to attend grad school, and an opportunity to pursue his dreams as a writer. It was sad to see her go, but, with such a wonderful opportunity being presented to them, it's understandable that they wouldn't want to pass it up. So, in the meantime, Brianna has been without her speech therapist. Because there's always a concern of antiprogress (I can't think of the term I'm searching for right now....), or losing ground, so to speak, Bri's OT, Denee, has been carrying on with some of the therapies from speech in our OT sessions.


A little about Bri's speech therapies....Right now, we're really working to try to give Brianna a system for communicating with us. We have three different ways for her to make choices, actually. The first way we introduced was with object cues. We hold up two objects in her field of vision, and ask her which one she wants. She has to look at the object she wants, (or, as is the case lately, the outfit), look at the person holding the objects, then look at the object again.

The second system we have for Brianna to make selections, is a simple "yes" and "no" system. We use the sign for "yes", and a "stop" hand to sign "no". The right hand is always yes, the left is always no. We ask her a question, ex: "Brianna, do you want to wear your jeans today?" Then we do the two signs, saying each sign as we do it. She'll look back and forth between the two signs, sometimes for several moments. But she eventually makes her choice and focuses on it.


The third system of communication we have introduced with Brianna is switch communication. We start out with two switches called Step-by-Steps. These are switches that are built to record voice commands/cues, as well as multiple stage directions. In the picture above, you can see one of the Step-by-Steps, the red and black button.


We program one of the Step-by-Steps to give Brianna choices, like, "Book, bubbles, computer", or "nap, bath, bubbles", with each choice being one "step". We program the second Step-by-Step to say something like, "That's the one I want!" We then hook the Step-by-Steps up to jelly bean switches, which are smaller versions of the flat, red and black switch you can see in the background of the first picture. Obviously, since Shriner's is non-profit, and all of the equipment is shared amongst several therapists and clients, it's not always possible to have the exact same equipment, or even the ideal equipment, when we need it. So, we make do, with textured switches (the soft, white one on the right side of her head seen below), or the egg switches, (the green one pictured.)


Brianna really enjoys making choices in therapy. One of her favorite choices is "fan". It doesn't hurt at all that, when she chooses the fan, Denee plays silly games with her, like, "Who gets the fan now?" and "Bump your chin with the fan".

We're not certain how much of Brianna's choosing is deliberate, and how much is just reflexive. Our best guess, several months ago, was about 70% deliberate. However, we treat every choice as a deliberate choice, because, regardless of the intentionality of it, it's setting up a pattern of behavior, and teaching Brianna to identify words, and to realize when a choice has been made. So, basically, in a nut shell, that's what Brianna's speech therapy sessions have looked like. Clear as mud, right?

August 24, 2008 - Just for Fun....

Just for fun, here are some more recent pics.

These four were taken at my company's employee picnic in July. My sister, her boyfriend, and his son all came with Brianna and me to the picnic. They had a bounce house for the kids (It kept collapsing on them, though, because it wasn't properly anchored, until one of the dads had a brilliant idea and staked it down properly.), a treasure hunt, door prizes, prizes for the best costumes, a cake walk, volleyball, horseshoes, and a bunch of other fun stuff. Lying on the blanket there, Brianna couldn't make up her mind whether she was happy or sad. But when we started going for a walk, she decided she was DEFINITELY happy.




This one is just for fun, so you can see how cute Bri is with her glasses on, sitting like a big girl in her wheelchair.


And this is what happens when Auntie is left home alone with the babysitter and the day off from work.



Showing off Brianna's beautiful blue eyes....

August 24, 2008 - Long Awaited....Brianna's Chair!

All right. As promised, here are pics of Brianna and her new wheelchair. It's a Zippie Tilt 'n Space. Though it's a genuine pain in the butt to load into the back of my car (I'll take pics of that later, so you can see what I mean...), Brianna and I both love it. So does the daycare provider. Brianna spends most of her time in her wheelchair while she's at daycare. Wed-Fri, I leave the chair there, so that she can use it there, and on the other days, it's at home with us. She loves to sit and watch whatever is going on around her. If Doris or I are cooking, she likes to watch. She loves watching her cartoons from that vantage point. She can see faces better, she can see things that are higher up. She can reach better, is cushioned and comfortable. Doris actually told me I need to find a Mon-Fri job, so that she can watch Bri five days a week, rather than just three, she loves her that much. But, since Bri has therapy during the week, having a Mon-Fri 9-5 job isn't feasible. So, our arrangement works for us, for now.



It even has her name embroidered on the back of the seat....see?

August 24, 2008 - Therapy, Bedtime, and Visits with Grammy

Okay, so from the top....



Brianna is doing wonderfully with driving her chair. She's becoming so bold! She loves to explore new areas. And "Authorized Personnel Only" and "No Admittance" signs hold no authority over her. If a door opens, she wants to go through it. If there's a person talking, she wants to find them to say hi. She LOVES the elevator. It takes her to unexplored levels of the building, including, as pictured below, the outdoor play area on the 7th floor.



Brianna is really getting the hang of driving. She can go in straight lines, she can make turns, and she definitely comprehends things. A few weeks ago, while we were up at Shriner's for PT, Bri, as usual, drove down to the central supply office to get a sticker. I held up two stickers for her to visually chose from. She kept looking back and forth between the two, as if she refused to choose one. So I told her, "If you choose a sticker here, we can go down to the reception area and get another sticker there." She immediately chose the Elmo sticker, and as soon as her chair was turned back on, she turned around, went out the door, around the corner, and down to the reception office, without stopping, without hitting anything, and stopped in front of the window, waiting for mommy to let her choose a sticker. Now you tell me....does it sound like she doesn't know what she's doing?









The weather the last few weeks has been pretty decent. We've had some triple digit days scattered amongst some milder days, scattered amongst some rainy, dreary days. On one of those days, while we were at therapy, the complex manager finally paid someone to come in and spray for ants. Not that it did much good. I mean, seriously. The entire city of Salem is built on one massive ant hill. We were ant-free for a total of about six hours. Now they're back in full force. But on the bright side, that day, Bri and I got to enjoy the nice weather, sitting in the back yard, while I read stories to her and the neighbor kids.



And she definitely loves driving her chair...she gets very upset if we go up to Shriner's, and she doesn't get to drive.

Bedtime around here has taken on some changes, as well. Thanks to Brianna, we are no longer hampered by the strict bedtime of 9pm every night. Rather, we are on what can only be termed as "Brianna time". Meaning, if Brianna wants to stay up till 11:30pm, there's not a darned thing you can do about it, short of putting her in her bed, in which case, she will throw a screaming fit until 11:30pm anyway. To counteract "Brianna time" in what little ways we can, we have taken to doing this at bedtime....

"Grammy" Mary is still a very big part of our lives here in Oregon. She tries to take Brianna for an overnight visit at least once a week, and calls regularly to check on us, make sure things are going well. These pictures were actually from the day after my 25th birthday, when we went to Mary's to have dinner and open gifts.

August 24, 2008 - PICTURE OVERLOAD!!!

Okay, it's been ages since I updated. So I figured the best way to do that is to accompany it with pics....So I went through all the pics I've taken since the Junior Rose Parade, and chose the best ones to post. The problem is, I've taken a couple thousand pictures between then and now, so narrowing it down was difficult. So I'll probably do this in two or three posts. So please, bear with me. So, beginning with the next post, the last three months, in photos...

June 8, 2008 - Junior Rose Parade

Okay, I should've posted this on Wednesday, but I got sidetracked and all that. But...on Wednesday, Brianna and I walked in the Junior Rose Parade in Portland. Or rather, I should say, I walked, Brianna rolled along in her stroller. She did amazingly well, too! We were right between two marching bands, and everyone around us had these obnoxious light-up clappers, so I fully expected that she would be completely overwhelmed and crying the whole time. But, she was smiling and happy! We walked alongside a family we met at therapy one day, and occasionally alongside Brianna's PT, who was pushing another little boy in a wheelchair. He was utterly sweet. While we were waiting for the parade to start, Brianna was very fussy. She doesn't like sitting in her stroller when we aren't moving. So, at first I got out a toy for her to play with. She didn't like that much. But the little boy was making the toy make noises for her. When I took Brianna out of her seat to cuddle, he played with the toy, and kept trying to help straighten the straps of the stroller, and trying to straighten my purse, which I set in the seat to keep the stroller from toppling over from the weight on the back. He really was enchanting. And he LOVED those clappers!

Anyway, the parade was about a mile long, but because I had to park near the end and walk back to the beginning, I ended up walking more like 2.5 miles. No big deal. The exercise did me good, even if I was sore afterwards. It also helped work out an ingrown toenail I had. I was scheduled to have my toenail removed because of it on Thursday, but Wednesday night, I soaked my feet, they hurt so bad, and that corner came out! So yay for not having surgery! NOT a good idea to start a new job doped up on pain pills, unable to walk, after having a toenail removed.

Back to the topic at hand...I am so proud of Brianna for how well she did during the parade. She was so calm and cool, and her typical sweet self. She definitely took a lot of stress off my mind by behaving so well through it all. Our theme for this year was "Super Heroes". We all got t-shirts, they fed us lunch, and hung a cape from the back of Brianna's stroller. There were little kids dressed up in full on superhero gear. A pink Superwoman, a firefighter with a super soaker, a Batman, a fairy princess, and many others. There were also two service dogs who wore t-shirts, and one little Yorkie named Natalie, with a pink bow on her head, who rode along in a stroller.

Brianna, waiting for the parade to start

This is one of the service dogs (I can't remember his name)

Natalie on her royal throne

Some of the clowns and others waiting for the parade to start

More people waiting...see the capes?

The lady on the left, with the green clapper, is Lynn, the PT student who has been observing our sessions.

June 7/8, 2008 - Time for Another Update

Well, for the past month and a half, I've been looking for work. And I finally found a good job with great benefits. I start working on Monday as a Direct Support Provider. Basically, that's a fancy title for a caregiver. I'll be working in a home for developmentally disabled individuals, helping them get up, dressed, bathed, fed, and off to jobs they might have. I'll be doing cooking and cleaning, and supervising any outings we might have. And like I said, there are great benefits. After six months, the employer pays for medical, vision and dental insurance, as well as AFLAC, and a CostCo membership. I get paid vacations, paid sick days, and paid holidays, including my birthday. Or, rather, any day within my birth month. Oh, and I get a raise at 6 months and at 12 months, if I've received all my certifications. And after a year, I have the opportunity to do more training and move up the ladder, get a bigger check, and eventually maybe even "mother" my own house. How exciting is that? Oh, and my supervisor worked it out so that I can have Mondays and Tuesdays off, so Brianna's therapies don't have to suffer for it! And I'll be working primarily day shift!

Brianna is doing really well being back in daycare. She has had some difficulty going to sleep recently, but if the last two nights are anything to go by, we should be over that now. Unfortunately, Brianna's daycare provider isn't open on the weekends, so I was going to have my sister's friend watch Brianna for me. She had said she wanted to, and every time I would call her, just to make sure she was still interested, she would say she was. So on Thursday, I called her to let her know I got hired on, and I was going to start needing her to work, and she said, "Oh, well, I've got so much going on this summer, I don't want to do anything on the weekends." So, I've been scrambling to find weekend childcare. I posted on ad on Craigslist, under the childcare section and in the jobs section under et cetera. And now I'm up to my eyeballs in applicants! I posted the ad on Thursday night/Friday morning (about 2am). Since then, I've had at least six applicants that I can remember. I interviewed one guy tonight. He's 19, a student at a local Bible college, and seems really sweet. He came by about 7pm, and I had started a stew on the stove, around 6:30pm. He stayed till almost 9:30, learning about Brianna, asking questions, playing with Brianna. About 9:00, my stew got done, so I invited him to eat (I made a big pot of it...put some in tupperware to freeze, some in tupperware to take over for Bob and Mary, and some in tupperware for leftovers). He asked me to give his girlfriend cooking lessons :-P. He said she loves to cook, wants to be a chef, but no one has the heart to tell her she's a horrible cook. So I guess he liked my stew :-P. I finally sent him on his way about 9:30, when it was time for Brianna to go to bed. I really did get a good feeling from the guy. He said he would like to go to school to become a kindergarten teacher, once his term at Bible college is over.

Tomorrow, I have an interview at 4:00 with a 21 year old girl who seems very nice, has good experience with childcare. I'm trying to set up another interview with a mom of five kids who wants to watch Brianna, as well. I would have to transport Brianna there, though. There's also another DCP who I might interview, if all else fails. Her rates are $4 an hour for Brianna, $3 an hour normally, so she's entirely reasonable in her rates. She has no experience with children with disabilities, but only one of the other applicants does. That applicant is 20 years old, and is a premed student, hoping to specialize in tropical diseases. She spent time doing volunteer work with the Ruel Foundation in the Phillippines, working with children with cleft lips, clubbed feet, and other disabilities. She is also certified through the World Health Organization in the integrated management of childhood diseases. She currently works full time at Applebee's, and leads the Wednesday Kids Night there. This girl's resume and experiences is seriously impressive. I have a feeling I'm going to have an incredibly difficult decision to make on this one ladies and gents.

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.