December 14, 2007 - Thoughts about my little girl

Recent events and conversations have spurred me to blog about my baby girl. Not about the progress she is making, though that is awesome. (We tried doing the two switch thing in therapy on Tuesday and, while she didn't tolerate therapy as long, she was grasping the concept!) But about my little girl. She is such a treasure to me. Every smile puts a little bit of sunshine in my heart. Every laugh or squeal or kick of her feet makes me so proud of her, because not too long ago, there were no laughs or squeals or kicks.

There are days when it's so hard. When I get so tired of making all the decisions on my own, when I just want someone to cuddle up with at the end of the night. Someone to talk about my day with, who understands how hard it can be at times. I've been asked many times, though, if, given the chance, I would try to change things and make them work with Sean. And my answer is always, without a thought or a doubt, no. I have the best part of him now, I don't need anything more from him. Were it up to me, I would never hear from or see him again. Never have to worry about him demanding visitation with Brianna, or fighting the child support agreement. Honestly, that is my biggest fear. Now that the courts are establishing child support, once he starts paying, he'll be within his rights as her father to demand visitation.

I don't know, I'm really starting to ramble now, aren't I, Damien? I told you I tend to do that in my blogs.

It's funny, though. A while ago, Brianna woke up fussing, and I had Sarah go upstairs and pick her up and bring her down to get her diaper changed. After she changed her diaper, Sarah was cuddling Brianna. And I got so jealous I wanted to cry. I never in my entire life imagined I would feel love as intensely or as desperately as I do for my baby girl. She is my world. I live for every smile, every snort. Of course there are things about parenting I dislike. Cranky days and dirty diapers are chief among them. But if I were given a choice between tolerating the cranky days to get the good days, and not having her, I'd always take the cranky days. She makes my life worthwhile. I don't know how to describe it. It's really beyond words. She's beyond everything I ever imagined a child could be. And every smile, every sound, every inch of progress makes me immeasurably proud of her.

December 8, 2007 - Christmas Time is Here Again

Okay, just wanted to jot out a quick little note about Brianna and how well she is doing, and post our Christmas pics.

Brianna is doing very well. Last Thursday, we got her new AFOs readusted. Adam typically makes the AFOs with two pieces, a hard inner shell that wraps around the front of the foot, then the outer shell that wraps around the back. But Brianna's heels weren't sitting back in the outer shell the way they should have. So we had Adam cut the inner shell to where all that is left of it is a piece shaped kinda like a Pringle's potato chip. Well, a little bit more to it than that. It's hard to explain. Anyway, we had him reshape it, and reconfigure the velcro straps so that they buckle differently, and now the AFOs work wonderfully.

We also got a TLSO soft vest made for Brianna. It's not to correct scoliosis, as they normally are. This one is strictly for use in positioning her in her stander, her wheelchair, her walkabout, or other positioning equipment. We tried it on Friday in her wheelchair for the first time, and it's amazing the difference having that vest makes in her ability to control her movements! Granted, she didn't tolerate her therapy as long, but that could've been just as much due to exhaustion as anything. She's been rather fussy the past few days, so I think she might be teething again.

Anyway, other than that, not a whole lot is going on. My sister, Sarah, moved back up here to stay with us. I don't know if I posted in earlier blogs about her staying here with us watching Brianna, or not, but she had been here, but went back to California, so that she could get a job and a place of her own. Well, winter weather set in before she was able to put her plans into action, and there is no way anyone would've been comfortable with her driving that 50 mile stretch of river highway in the winter months. Plus my brothers were starting to get on her nerves. So she asked if she could come back up here, and I told her yes. Now she is going to work at Sunnyside, where I was working, hopefully, and we'll get a three bedroom house or apartment, as soon as we can save enough money for it. I'm anxious. I want that bigger place. Anyway, that's all for now. Here are our Christmas Pics.

November 15, 2007 - Pictures!

Okay, so we had therapy again today. And I got pics! I'll write more later, but I wanted to post the pics of her in the wheelchair.

November 12, 2007 - The Little Stinker!

Brianna is such a little stinker! Yesterday, we went to church with Mary. When we got back, I was completely exhausted! I put Brianna down on the floor to watch her cartoons, and I stretched out on the couch with my book, biding my time till dinner. Suddenly, I hear this shriek! Brianna was playing on the floor, as happy as could be. But it appeared she had the tubing from her feeding pump wrapped around her throat! I started panicking! What a horrible mom to be so absorbed in my book as to not notice this! So I slid down on the floor, untangled her, and twisted her around again. It wasn't wrapped around her throat, thankfully, but the little stinker thought it was funny! Then, five minutes later, she did it again! The little bugger has certainly learned how to get into trouble! I actually had to MOVE two of my wicker baskets from beneath the coffee table, to get them away from her. And there's no keeping her toys tucked in a neat little corner. She does her darndest to get into that corner and sling them all over the place. But she takes such joy in it, kicking and shrieking as she does, I can't be angry with her. Oh, the joys of being a mother.

On the sad side, though, I saw our first picture of Brianna the toddler. I know, I know, you're wondering what the heck I'm talking about, she's been a toddler for a while. But on Saturday when we saw Mary, she took some pics of me and Brianna. And she got them developed. When I looked at them on Sunday, one of them in particular struck me. Brianna looked so much like a little girl! Till then, I had stubbornly refused to view her as anything but a baby. But when faced with such incontrovertible proof of her growth, I felt my heart break just a tiny bit. Just hours before, sitting in church service, I had been thinking to myself, "I'm so lucky. While other children Brianna's age are growing up, sticking their fingers in light sockets, tearing into things, running in the road, I get to keep my baby longer." Then, I see this picture, and it's like Fate or God or someone is slapping me in the face saying, "Ha ha, I don't think so! You can't keep her little forever."

To make matters worse, this song has been haunting me! You might know it. It's called "In My Arms", by Plumb. The first verse goes like this:

Your baby blues
So full of wonder
Your curly cues
Your contagious smile
And as I watch
You start to grow up
All I can do
Is hold you tight

Can you imagine the emotional turmoil I have been experiencing having these thoughts, with this song playing backdrop to them? I feel like I'm becoming a raving lunatic! Why does she have to grow up? Why can't she stay my baby girl forever?

November 10, 2007 - Drama, Drama, Drama

Man, you'd think I'd get a break from the drama, wouldn't you? But nooo...never! Here are the latest developments in our lives:

Brianna continues to do well in therapy, learning more about using her head to control the wheelchair, and taking more steps in the walkabout. She is learning to make choices between objects or activities in speech therapy, either using visual contact - look at the object, look at the person holding it, then look at the object again, or by using a step-by-step switch to scan through a selection of items, then turning away to select it. The speech pathologist says she thinks Brianna is making a conscious decision about 70% of the time, which is really good.

In other news, I had to give notice at work. See, Brianna's weekend nanny, the girl who seemed so wonderful, that I was raving about to everyone, turned out to have a few issues. I won't delve into those issues, being as they are rather personal to her, but suffice it to say, they are rather disturbing to me, and I no longer felt safe leaving my daughter in her care. I don't seem to be able to find and keep good childcare for Brianna for the weekends. The daycare provider, whom I was so hesitant about, has turned out to be quite wonderful, and is actually holding a spot for Brianna until January, when I intend to go back to school. But in the meantime, between now and January 7th, when I begin classes again (hopefully), I am not working, I am staying home, working with Brianna, hopefully trying to get things organized and maybe use some of her Title V money to buy a step-by-step, a few jelly bean switches, and some adaptable toys for her, in addition to, possibly, some other things.

Giving notice at work really wasn't as horrible as one might think. For one, I had already planned to give notice in December so that I could go back to school. I had my previous coursework evaluated, and with it, I can complete the two year Speech Language Pathology Assisting program in one year. Hopefully. Or two years, at part time. Not sure yet. But it's quite fortunate, because out of 45 general education credits, I have achieved, according to the transcript evaluation, 44. Just need to take another PE class, maybe another science class, and I'll be fine.

Admittedly, between now and the time I graduate, money will be tight, and my stress level is going to skyrocket. But I have realized two things in relation to my life and my future. First of all, if I ever want to make anything of my life beyond what can be made of one working a minimum wage job washing dishes, then I have to finish my schooling. I can't just let 3 years of education and $30,000 worth of college loans add up to nothing. Secondly, if I want to keep my sanity about me, there is no way I can juggle school, work and Brianna's therapy schedule. So I cut out the one that we can most do without. Brianna HAS to have her therapy, there's no compromising there. And I HAVE to finish my education in order for us to ever have a life independent of the state. And so, I have to suck up my pride and go down to DHS yet again to apply for aid, yet again, so that I can finish school and forge a new path.

Is there any doubt in your minds now that I'm going nuts? If you still doubt it, read my latest entry in my other blog. Maybe then you'll believe me when I tell you I'm about a hair's breadth away from sitting in a corner, drooling, babbling and rocking.

October 22, 2007 - Doubts

I'm not so sure I like Brianna's daycare provider. She seems nice enough and all. But when I went to pick her up this evening, I was about half an hour early. It was 9:45pm, and Brianna was still up. Usually when I go to pick her up, she's in bed. Then again, usually when I go to pick her up, it's closer to 10:30pm. So was tonight just a fluke? Or does the daycare lady only put her to bed a little before I get there? I'm going to give her the benefit of the doubt and assume that she tried to put Brianna down, but she screamed bloody murder. Brianna does that at times, especially when she has had a really good nap during the day, and is not ready for bed yet.

Really, I don't know how much longer I'm going to need the daycare provider. I'm going back to school in December, so I will need someone to watch Brianna while I'm in class, but I really don't know if I'm going to be working until then. I'm THINKING I'll keep working till December 1st. But the daycare is going to be closed from Nov 19 through Thanksgiving weekend. So I won't be able to work during that week, which really might end up causing issues. Then again, if I don't qualify for the apartment subsidy, after nagging my boss to fill out the paperwork so that I can get it, I will have to quit working anyway. There's no telling when another subsidy might open up, and I really need it before I start my classes, because I won't be working while I'm going to school. Argh! So frustrating! Heck, I just need a man! Someone to take care of me, and help me through these hard times.

October 18, 2007 - Amazing Day!

Oh my goodness, todays therapy session was amazing! It was our first session with her new PT at Shriner's, and we got there about an hour early, so we got to get about half an hour of extra therapy. Since she hadn't yet met Brianna, the PT wanted to do her own mini-evaluation and give her own opinions about Brianna's prognosis and what our goals should be. After doing the mini-eval, we tried Brianna in two pieces of equipment: a walkabout and a power chair. She did so well in both! She lasted for about half an hour in each one, and was quite happy! Though she couldn't really go too far in the walkabout, since I didn't bring her shoes to go over her braces (I'll remember to do that next time), she was getting the concept, and was trying to take steps. She was doing wonderfully with head control, too! So amazing! And then...we tried the powerchair! Brianna was using her head to control it, tooling up and down those halls like it was second nature! The PT said she's seen ten year olds who don't grasp it so quickly! I didn't know whether I wanted more to laugh or to cry, it was so amazing! So the PT is going to go ahead and request funding for a walkabout for Brianna, from Wheels to Walk. That should take about three or four months. And they're going to put her on a "needs" list for funding for a power chair through Title V and another resource they have. Meanwhile, the wheelchair vender is going to keep an eye out for a used wheelchair base for her, so that we can cut the cost in half and hopefully get funding quicker that way. In the meantime, EI is supposed to be working on getting a manual wheelchair, a tilt and something, for her to use once she starts going to school. I swear, this has been a great week for therapy!

September 23, 2007 - Road Trip!

Okay, so I just got a comment from Jessica, who chewed me out for not updating and not posting on the BBC board lately. So, here's a long overdue update.

In July, Brianna and I had our first long roadtrip! We had previously driven about 3 1/2 hours north, to visit some friends in WA, but this time, we headed south...six hours south, to visit my family in California. Long trip, but Brianna did so well! She fussed once in a while, but we made a pit stop in Myrtle Creek, OR, about halfway there, to visit my brother, Gordon. We bought him lunch, and then headed South again. We had such a great time visiting! We stayed for 5 days, during which time we experienced the warm sulfur springs (Brianna loved them!), a forest fire that started the next day at the aforementioned springs, a serious thunder storm, sweltering heat, bank overdrafts, and a seriously shortchanged direct deposit paycheck. We had a blast, but, when all was said and done, it was good to be home.

When we came back from Cali, we also had a passenger, my sister, Sarah. She came back with us, intending to get a job, and spend time taking care of Brianna. She was here until Sept 14th, when she went back to Cali, having decided to go back to school. It was nice to have her here, but, again, it was good to have my home back. Now, I find myself facing lonely days filled with work, therapy appointments, errands, and nothing more than a book for company (Brianna being the exception to this).

On the therapy note, though, we have wonderful news! Brianna has finally begun PT/OT/ST at Shriner's! She is going once a week to all three, which means two appointments, two hour-long (one way) drives to Shriner's, and one day less of work each week! That could be a good thing, or a bad thing. Because, though I'll have three days off each week for therapy, I will be at therapy all three days each week, which makes for a really long week with absolutely no me-time. Joy, oh, joy. As if I'm not insane enough as it is!

So, to add to all this, here are some more-recent pics of Brianna and me. Enjoy!

Brianna and her aunt Sarah and her aunt Mouse

Brianna smiling

Brianna and mommy

Brianna, mommy and Aunt Sarah Me

June 28th, 2007 - Zoo Pics!

Okay, so, Jessica has requested zoo pics. Unfortunately, I didn't get any pics of Brianna, and only one of Evan and Kara. But I do have some other pics of Brianna to post as well. Let's see what I can come up with.

Beavers "grooming" each other

This black bear kept pacing back and forth in front of the window

Evan and Kara

Elephants

Tiger...we almost missed him...we passed by while the trainer was putting down ice for him, and went to the restroom. When we came out of the restroom, the tiger was out.

Over Memorial Day weekend, we went with Bob, Mary and Damien up to Bob and Mary's cabin in the mountains, to celebrate Memorial Day as well as Brianna's second birthday. We had a great time. These are some pictures from the weekend.

Smiling at Damien's silly antics

Enjoying her new bubble maker, from Mary's lap.

Going home.

June 26, 2007 (for Jessica!)

Okay, so, since Jessica scolded me for not updating, here's the newest update.

Since I've recently started working (the day after Memorial Day was my interview, and I started work the next week, if I remember correctly), things have been really hectic. Fortunately, we have a wonderful daycare provider who is very flexible and doesn't get too exasperated by my scatterbrained last-minute needs, or my late arrivals. She and her daughters absolutely love Brianna, and I am very happy with the arrangement.

So the latest news is, we started Brianna on her feeding pump around the clock. She ran out of Prevacid and it took a while for the doctor to authorize a refill. So she was out for a few days. Because I didn't want her to suffer from the lack, I decided to give the around-the-clock pumping a try. The doctors have been urging it, because it will help get more formula into her, but I was hesitant because she is such a squirmy little thing, I was afraid she'd pull it out. She has done excellently! We just tape down the tube securely, prop up the pump beside her in its little backpack, and let her play! If she's doing therapy or anything, of course she comes unplugged. But for the most part, she stays hooked up to it. Sue, the DCP, is okay with the pump, though she won't put her down for a nap while she is hooked up to it. She would be entirely too worried if she did, so I told her, if she isn't comfortable with it, then that's fine. But I am very anxious to see if Brianna has made any significant weight gains since we started her on the pump full time.

Oh, we went to the zoo on Sunday, as well. It was a lot of fun. We went with a friend (maybe someday more?), Evan, and his ten year old daughter, Kara, and we had a blast. Kara absolutely loves Brianna. Who doesn't? She was very curious, and asked a lot of questions about her condition, about her tube, and all sorts of stuff. She's such a smart girl! She definitely made the trip more enjoyable! I hope to get to spend some time with them again soon. I can honestly say, Evan is the type of guy I am looking for. He isn't needy. He is steady, honest, and loving. And he is a Christian, which is awesome. He doesn't have any illegal habits, or any legal addictions, either, unless you count that triple shot espresso he HAS to have in the morning :-P. Oh, and did I mention that he is a Vin Diesel look-alike? Oh, baby, that in itself is enough to make your heart skip a beat! But add in the facts of his personality and his utter devotion to his family, and you've got one amazing guy. Let's just say I REALLY hope I get to see more of him in the future :-D. And I didn't mean that in the LITERAL sense, you nasties!

June 2, 2007 - Saturday Market

Today marked our first trip to the Saturday Market! And, of course, Mommy, the big dummy, forgot the stroller!

Okay, so here's how our day has shaped up so far. Brianna woke up at about 10am, at teh same time her feeding pump alarm started going off, my cell phone bleeped at me to tell me I had a text message, and I started hearing doors slamming next door through my open bedroom window. Eh, no big deal. Brianna had a very poopy diaper, but she had a great big grin on her face, so she KNEW what Mommy thought of that.

We sat around and relaxed for about an hour, then I took my shower, got us both dressed and all that, and went for a drive. One of Mary's friends, who helped organize a Military Moms' group here in Salem, which is throwing an All-Military Ball soon, was having a yard sale to raise funds for the packages the group sends out. This is a woman who is absolutely in LOVE with Brianna! The first time she laid eyes on Brianna, she wanted to babysit her! I thought she was joking at first, but she's serious! She's anxious to get to babysit! So, anyway, I showed up to the yard sale, which was pretty slow by this time (it was about 1pm, and really hot outside). So Cynthia kept telling me to load anything I wanted into the back of my car. She told me she'd rather give it to me than have it go to Goodwill after the sale ends tomorrow. So, I got a cute storage basket, a lamp set, a small trash can for my desk, two stuffed dolls for Brianna, and two matching Carry on suitcases. Cynthia held Brianna while I perused the sales items.

After loading up the car with all these treats, I thought about dropping them off at home first. But it was already 1:30, and the Saturday Market closed at 3, so I wanted to get there first. Got there, didn't even think about needing a stroller until we were parking. So, I ended up packing Brianna around, squirming, arching, head butting and causing mischief the entire hour. But we got to see lots of stuff. I really wanted to buy some plants, but I knew I couldn't carry a hanging basket and Brianna at the same time. So I settled for two small bouquets of mixed flowers...tiger lilies, greenerie and some wildflowers. Beautiful flowers. Made my day.

So now, we're home, after I stopped at Carl's Junior's for a burger (Darned radio ads for the new Teriyaki burger did me in). I'm trying to get hold of Damien, so that he can take Brianna for the night tonight. I have a few errands yet to run, and then I'd like to go to church this evening.

Anyway, before I forget, I ran into one of my former Lit. professors and his wife, who works in the registrar's office, while we were there. Stood and chatted with them for a few minutes. Bonnie was really sweet, and remembered me talking about Brianna when I came in a couple weeks ago to request a copy of my transcripts. She asked some questions about Brianna and the prognoses for her walking or talking. It was nice to get to chat. Dr. Hills is one of the professors I most admired and enjoyed learning from at the school.

May 28, 2007 - The beginning

I decided to start a blog about the everyday ups and downs of being a single mom to a developmentally disabled child. I know there are other parents out there like me, who really want to find someone who can relate to their situations. Here I am. I'm here to tell you about my own experiences with insurance, finding good childcare, trying to find a good, flexible job, juggling doctors appointments and therapy schedules, AND trying to find time to fit a little romance into it all. Let me tell you, it isn't easy. My romantic life since the dissolution of my last relationship last September has been virtually non-existent. And it gets lonely. Throughout my blog, you'll probably be reading a lot about my own emotions, and how lonely it gets being a single mom. I've always been particularly vulnerable to softer emotions, and firmly believe that I was not created to be alone. I am the type of person who thrives as part of a couple. Anyway, I'm going to end my first blog here, as Brianna is fighting sleep, and I really need to pick her up and cuddle her for a few minutes. Enjoy the blog, and I hope you find it entertaining, at least!