Friday, May 30, 2008


Do you know that right now I have two baby announcements sitting in my in-box? One was born yesterday and the other one will arrive some time today. Both of the e-mails had pictures, which I love, but it also strikes a little cord with me.
All of those "first" pictures show the women in their hospital beds with their babies. You see dads standing nearby and maybe even machines or medical equipment. There's talk of labor and pushing and epidurals.

I can't help but wonder if I'm a just a little damaged because I can't make myself view these moments as happy times. Yes, babies are a good thing--I'm not talking about that. It's just that for me, the birth process was extremely traumatic. There was no happy running to the hospital, no eager anticipation. Instead we had fear. I actually cried right after I delivered Charlie and they weren't tears of joy. They didn't even let me see him--I got a glimpse of a blue-ish foot before they whisked him away. Later, I had my husband go take a picture of him at Children's Hospital so I could see what he looked like.

So, I want to be happy for people, and I am happy for them. I just can't help feeling a rock in my stomach as the big day looms near.

I plan on having at least one more child (maybe two), so I don't know what this means for me. Will I spend my next pregnancy on pins and needles? Will I be able to enjoy it, or will it be nine months of stress? My husband has suggested that maybe it can be a time of healing for the both of us. I sure hope so.

Here's a picture of me at the end of my pregnancy.

Thursday, May 29, 2008

A Moment

Today is Charlotte's birthday. If you're the type, please take a moment and say a prayer for her family. I have no doubt that this is an extremely tough day for them.

Wednesday, May 28, 2008


Let me apologize for the blurry image. Buster wasn't really feeling like a photo shoot today. Today, he got hit by a car in front of my house. Thankfully, he seems to be doing well, but we did have to spend a couple of hours at the after-hours emergency place.

The after-hours emergency place is possibly the worst place in the world. It's not just the sick animals, it's the dogs being put down, the people crying, and the bits and scraps of humanity who show up. Two women showed up with a flea-infested Pomeranian who wasn't acting herself. They had only fifty dollars and were arguing because the up-front payment is eighty-two. Ugh. I would hate to have to argue with people about whether or not you could treat their animal, but I guess that's the business they're in.

Buster is home. He has no broken bones, but he did damage some teeth. We have to go see our regular vet in two days to see if any of them need to be removed. In the mean time, we just need to keep an eye on him and make sure he doesn't show any sign of fluid on the lungs. The people from the vet are going to think that I just let my animals run free and wild. This time, however, it's all the Hubby--I wasn't even outside when it happened. I've had Max for over six years and Buster for over five and I have never had this many problems in such a short span of time.

In other news, Charlie's physical therapy evaluation went well. She didn't go over every specific with me, but seemed pleased that he grabs things with his right hand (new trick), and puts weight through his legs. This is actually a brand-new pediatric clinic and she is still getting it off the ground, so I didn't get a real good idea about what things will be like. She is nice, though, and I think we'll like working with her. She set an immediate goal of independent sitting within three months, an intermediate goal of getting in the crawl position, and a long-term goal of pulling to a stand. This is the second time someone has mentioned pulling to a stand, so I'm going to have to get together some strategies for that one. She'd like to see Charlie once a week minimum.

Movin' right along!

Tuesday, May 27, 2008

More of the Same

Howdy! We had a lovely weekend and I've been a bit reluctant to return to the real world. Tomorrow, however, we will be uncerimoniously thrust back into it.

Tomorrow, we begin private physical therapy at the local hospital. Tomorrow, I have to get us there by 8:30--no small feat, fill out paperwork, and then we'll be "evaluated." It's never really fun to be evaluated because the whole reason you're there is because you're behind. From what I've read on other blogs, they like to document EXACTLY how far behind you are in a bunch of different areas. Yippee!!

We already have a pretty busy schedule--we see OT, PT, and an Instructor every week. We see a speech therapist every other week, and we have the vision therapist come out once a month. I've questioned the sanity in adding yet another therapist, but I think it's the right thing to. Gross motor is, by far, our area of greatest deficit. Well, his vision is pretty sucky too, but there's only so much you can do about that. I'm hoping that going to a clinic will give us access to equipment that you just don't find in a home-based program. Equipment like a creepster crawler or maybe a walker paired with a treadmill. Maybe I want too much too fast, but I feel like young children have such a capacity to learn and grow, and I want to make sure Charlie has every opportunity.

So, tomorrow we'll get up early (for us), and we'll listen to things we don't want to hear, so that Charlie can have the best life possible. Just more of the same.

Monday, May 26, 2008

I'm Alive

It's been a while since I've gone this long without posting. I'm still here. I've actually half-written a bunch of posts, but mostly I've been visiting with in-laws and eating BBQ and loving the fact that my husband had a day off of work.

I'll be back--with pictures--very soon.

Saturday, May 24, 2008

Things That are Not Good

Talking to a woman on the playground for twenty minutes today only to realize as we were parting that she had no idea who I was.

My mother calling me this morning to tell me she's got the Shingles.

My mother telling me that Charlie may have the chicken pox.

My mother telling me that I should probably leave the playground now--just to be safe.

Not being able to finish the twenty-four invitations we made by hand.

Friday, May 23, 2008

Where I Should Write an Actual Post

. . .but instead I'll just update you on Charlie's progress.

This week Charlie has taken a vested interest in his toes--he wants to grab them and eat them. He can't actually get them in his mouth, but if we help him a little he can manage it. All the therapists are saying, "important developmental milestone!" Months behind schedule, but whatever!

He has fully abandoned prop sitting. Prop sitting is so three months ago. He wants to play, and a boy can't play if he's holding himself up. It's good and bad: his trunk strength is improving by leaps and bounds, but there's no way to measure it--we just know. He could play with his Mozart music cube for as long as I'm willing to help him. He just loves to sit there whapping it, and sometimes if you take your hands away, he'll play with it for a little while before he notices and falls over.

His PT and OT want to introduce Theratogs to get him to independent sitting. The OT said that she knows he'll sit and it's only a matter of time. She also talked about his potential, which makes any momma smile.

He teacher called him smart. Did you hear that? My boy. Smart. I felt like Violet from Willy Wonka. I am a swelled up balloon that could bust with the joy and happiness that statement brings me. Granted, his teacher works with impaired kids all day long, but it's so nice to hear someone say good things about your child--it isn't an everyday occurence around here.

His OT has moved on to putting him into crawling and walking positions. He looked good in both and he actually took a step of his own volition.

He's becoming semi-mobile. No longer can I leave my child unattended on beds, sofas, and changing tables. Actual vigilance must be used. I'm like a real parent or something. Anyway, what I mean to say is that through a scrunching/semi-roll the kid is wiggling all over the place.

He grabbed something with his right hand. More specifically, he grabbed a yellow block with his right hand. He might have been going for his toes, but he made contact with and and grabbed a yellow block. Previously, his right hand has been good for propping and not much else. This is progress.

He is completely done with signing "more." He was actually giving his speech therapist looks like she was crazy. I'm not sure what is going on there exactly, but I'm sure we'll work in out. . . I suspect he's inherited my attitude.

Thursday, May 22, 2008

Random But True

When I drive by things for sale on the side of the road, I have an instinctive urge to buy them. This would make sense if it were clothes or shoes or even furniture, but I'm driving along and thinking, I'm sure I could find a good use for a U-haul truck.

I love the idea of high school. I didn't actually like going to high school, but I think the idea is nice: Homecoming games, dances, gossiping in the cafeteria. In reality I went to an all-girl Catholic school where our homecoming game was volleyball and we only had twenty-five minutes for lunch because they had to squeeze in religion. And I had to wear black and white saddle oxfords for four years--that's a pain you don't get over in a day.

Certain songs, the ones that I really like, I seem to develop dance moves to. Very specific dance moves. Mariah Carey's "Touch My Body" is a perfect example. I MUST touch my knees during this song. Is the title "Touch My Knees?" No, no it isn't, plus touching your knees can make it hard to drive.

Wednesday, May 21, 2008

Being Political

A few weeks ago one of Charlie's therapists let me know that they would be going another year without a pay increase. They wouldn't even be given a raise for cost of living and they pay for all their own gas. Considering how much gas is squeezing everyone's budget, I thought this was awful. Teachers don't get great pay, but we're pretty much guaranteed an incremental increase each year. So, I got all political and sent the following e-mail to some of our family members and a couple of friends.

Dear Friends and Family:
I am writing today about something that I feel is very important. I am not a very political person, but this particular issue has hit pretty close to home and I feel that I must say something.

Charlie, as many of you know, had a very difficult birth. He began receiving therapy at three months of age and now sees five different therapists at different times of the month. These therapists have been provided to us free of charge through a program called Early Steps. Early Steps provides therapists in the home. This is very important because some children are medically fragile and are at-risk whenever they are around large groups of people. It is also beneficial because the therapists help you learn how to help your child using the things that you already own. Every state is required to have some type of Early Intervention Program by the Federal government. This is because they realize the importance of reaching kids early. The brain is still finishing it's development and great strides can be made at this time.

Three years ago, pay for Early Steps providers was cut by 25%. This year, a proposal to increase pay was removed from House Bill One. Already, Early Steps is having difficulty getting enough providers. Charlie waited six months to get a physical therpaist. Early Steps Providers need to be paid competatively. Without competative pay, they will go get jobs elsewhere. Please don't do to Early Steps what we did to public schools in the 90s. Teacher pay was low and schools suffered. There was a teacher shortage. These children deserve every chance they can get. Please don't deprive them of that by making it so difficult to find providers. If you can, please take the time to contact a state representative and express you concern. Specifically mention Early Steps and House Bill One.

You can use the following link to get your state representative's e-mail address or telephone number: Please pass this along if you can.

I guess I feel like I need to address one more thing. I'm sure that you, like myself, feel that we pay for too many things already. Perhaps you don't think that tax dollars need to be spent serving at-risk children. Here's the thing: Pay now or pay later. If these kids dont' get the help and attention they need then they will end up on disability at age 18. We'll be supporting them for the rest of their lives. This is our best shot to help them fulfill their potential and become contributing members of society. You will end up paying for these kids--just decide if you want to do it for three years or for fifty.

I'm including a picture of all the progress Charlie has made in just ten months. Few doctors would have thought this possible. I know that this is because of all the hard work we put in in conjuction with Early Steps.

Thank You,


Well, you know how these things go--my husband passed it on to a friend who happens to work with a state representative. The friend printed it out, gave it to said representative, and then added a written note letting him know that if he ever wanted to meet Charlie personally, he could.


A politician invited to my house. I'm not sure I even like politicians. I am thankful that the guy is really busy and probably won't have time. Still, my nerves!

Tuesday, May 20, 2008

Just When You Thought I Was Done

Today, we got an invitation in the mail for "The Parents of Children With Special Needs." It's being held on Saturday morning at the all-new, accessible playground that's TEN MINUTES FROM MY HOUSE! If you're not the clicking type, an accessible playground is one where children of various ability levels can play--even kids in wheelchairs. There are two in the entire state. Honestly, I didn't think Louisiana was up-with-the-times enough to have something like this. Amanda took her son Jack to an accessible playground in their area, and he seemed to be having a total blast. The event is being sponsored by the Rehab department where we just-so-happened to get an appointment (finally!).

I'm a complete dork and I know it and I don't even care.

Woo hoo!

Monday, May 19, 2008

This Just In!

I'm just going to come on here and squeal joyfully via the Internet. The neurologist called and there is NO SIGN of epileptic activity in Charlie's EEG. No seizures! Now, it's not completely normal, so they'd like to keep him on his Phenobarb, but that's it! We expected the abnormal part--it's mostly just an indication that he's experienced brain trauma, and we already knew that.

Insert Happy Dance here! (and, apparently, a heck of a lot of exclamation points).

Shopping and the Enviroment

Recently, you may remember that we went BPA free with regards to Charlie's baby bottles--basically, a chemical that the US had deemed safe, was found to be not safe by the Canadians. All of the sudden, US companies and manufacturers were pledging to eventually go BPA free. While researching the issues, I started to find that BPA isn't the only chemical that concerns people. There are others.

So, I started reaseaching going green a little bit more--I started reading a book, and Della directed me to this video. The combination really got under my skin. To summarize the video (although I high recommend watching it in it's entirety), stuff is produced at great cost to our planet, often this stuff involves hazardous chemicals, we buy the stuff because we think it will make us feel better, we get home and throw the stuff away because it's crap. Lather. Rinse. Repeat.

I mean, it makes sense. We get out of our ginormous gas guzzlers that we bought on credit, we drag our sluggish butts into stores where we buy pre-packaged, mass-marketed junk that we fully expect to throw out in the next few years. I am a horrible offender. Horrible. I have mountains of stuff and at this point I don't even know why I own half of it. I sent about six full boxes to Goodwill when we moved in January and I've still got too much stuff. I keep buying more stuff too--magazines, t-shirts, shoes, you name it. I love shopping and buying stuff. I think I like acquiring it more than I actually like the stuff.

Here's the stuff:

That's three closets in my house.

Here's the stuff in the garage:

Close Up:

I think it's pretty clear that I've got NO organization, and there's NO way I could begin to know what I have much less wear it all. Keep in mind, I already got rid of at least three full boxes of clothes. I never really felt bad about buying a bunch of stuff--I wasn't hurting anyone, and I didn't have credit card debt. I've changed my mind, though. I need to make do with less, think about the kinds of materials used, and I need to think about quality over quantity.

So, my mission:

  1. Buy less.

  2. Investigate second-hand and vintage stores

  3. Find new homes for things I don't wear.

  4. Get rid of enough stuff to make my wardrobe manageable.

To kick things off, I'm giving away two pairs of shoes. Size 7.

First, I have some hoe-tastic red plastic stilettos that I wore for two hours and I wasn't even standing up. They haven't seen the light of day since. Maybe you need them.

Next, I have a pair of never-worn (other than for the picture), off-white cowboy boots with gold accents. They are leather and the brand-name is BCBGirls. Got a little cowgirl in ya? Let me know. I have another pair from this brand that I wore to a country concert and they are very comfortable and I got several compliments on them.

So, if you're interested in the free shoes, email me at barnyardmama [at] gmail [dot] com. If more than one person is interested in a particular pair, then I'll put names in a hat. If you don't care about the shoes, please, go watch the video or even just ask yourself about all the stuff you buy--do you NEED all of it? Some stuff we do need, a lot of stuff we purchase just for the sake of buying something. Time to separate the wheat from the chaff.

I'm going to try to give away stuff every Saturday. I'm going to pay the postage and everything.

Friday, May 16, 2008


As I made abundantly clear, yesterday wasn't one of those days where I was taking life in stride. I think that as far as the big picture goes, however, I have handled the barrage of life changes pretty well.

Sometimes I worry about my husband a little. He just goes along, loving our son, and never talking about anything. You can say what you want about me--I don't hold things in for long. After Charlie's birth I was numb; then I was depressed. Sometimes I would hold him in my arms and the tears would flow over both of us. Some nights I would scream into my pillow. How could this have happened to my beautiful child? I ached with his easy, sweet manner. He is so perfect--how could he be damaged? I remember holding him once during an EEG, singing him to sleep, and just wishing that I could be a normal mother holding her normal baby in a dark room. I hated that our life together was one of machines, and beeps (oh, the freakin' beeps), and tubes and wires.

I don't let myself wallow too much these days. There's no point. Make no mistake, I am an ace at feeling sorry for myself. I have had relationships end, and have felt as if my life were ending. I've had people slight me at work and I've talked about it for months. I can hold a grudge for years.

The Charlie thing is so big, though. So very, very big. It has opened me up and stretched me out; it has enabled me to see the beauty in the tiniest things. If you read enough of the writings of disabled parents, then one thing rings true--we appreciate the little things. Nothing is taken for granted--not a bite of food, a smile, a glance, a step, a breath, or a heartbeat. These are not guaranteed. There are times when I'll see some long-legged teen ambling through a parking lot and I think to myself, "her parents take it for granted that she can walk."

Maybe they do and maybe they don't. I don't know their story. Maybe they were infertile for years before the birth of their miracle girl. Maybe she's already lost a parent or a sibling. Maybe I need to stop worrying about what everyone else has.

My husband is still suffering with the idea of normal. He's angry or sad or something about people who have "normal" births. He's still sorting it out and that's OK. I think I'm a little further along. These days I question the concept of normal--what is it and who do we think has it?

I feel so very good about what God has given me. I stay home everyday; I snuggle with my baby every morning. I have a big front porch that I can sit on and enjoy the breezes. I could walk to church (if I got up in time). I eat a lot of really good food. My life may not be perfect, but I could suffer a whole lot more. I don't' even have the right to feel sorry for myself--this is Charlie's battle, not mine. I am his cheerleader--I need to get out the pompoms and stop with the pity party.

There is so much good in this place--in this world. I have so very much to be grateful for.

One of THOSE Days

One of those days. We all have them. Here's mine:

Today, at lunch, my uncle removed the cooked zucchini from his plate and put it on his bread plate--because he doesn't eat cooked vegetables. For reasons that are completely stupid, this annoyed the crap out of me. I informed him that it was bad manners. Never mind how egregious it is to comment on someone else's manners.

No fewer than five people in the restaurant commented that Charlie was sleepy and by the end of lunch I was storming out of there. He did, in fact, sleep through all of lunch, but why in the name of Caesar can't people just shut the hell up and not talk to me? I don't come up to you and say that the diet doesn't appear to be working. I don't point out the bags under your eyes or the glaring roots. DO ME THE SAME COURTESY. One of these days I'm gonna snap and yell, "no, actually, he's not sleepy--he has major brain damage and cerebral palsy and vision problems to boot--WANNA TALK ABOUT THAT?" Sense a little tension?

In the car on the way home I was singing Montgomery Gentry's song Lucky Man full blast. I got to the verse, "had a close call last spring" and choked up. I had to stop singing.

And finally, I got an update on a baby that was in the hospital with Charlie. He had to have a Heart catheterization done (standard follow-up in his case), and his mom sent an update and pictures. In one of the pictures he's sitting in a toy car and smiling at the camera. I just lost it. I started sobbing and couldn't stop. This woman has had three children who can walk and who look at her and smile. It just didn't seem fair.

I would say that 90% of the time I feel extremely blessed and lucky and happy. Then I have days like this. I guess you just gotta let the tears fall sometimes.

Thursday, May 15, 2008

Around the Moon and Back Again

Charlie had an appointment at eight-thirty this morning at New Orleans Children's Hospital. It's not my favorite place, but they put in Charlie's shunt, so we've been going back there for periodic check-ups.

I live about 45 miles from New Orleans proper in a little town. Google estimates that the drive will take exactly an hour. Factor in construction and early-morning commuter traffic, and I wasn't sure exactly how long it would take. For this reason, I slept at my parents' house last night. Google estimates that the drive from their house should take twenty-four minutes. I have no idea why the hospital insists we come in before nine for a CT scan. The last appointment I had was for 7:30 and they wanted me to be there fifteen minutes early. The employees weren't even there yet. Not that I'm bitter or anything.

I didn't count on some wild Louisiana weather changing my plans a bit.

I left the house forty-five minutes before our appointment. The night before the weather had been crazy--power outages, tornadoes in other parts of the state, flash flooding, and all that fun. It wasn't a hurricane-scale situation, but just one of those things that can pop up in the spring (or summer or fall, hell, any time in south Louisiana).

Traffic was slow. There was standing water on the shoulders and sometimes in the roadway itself. A tree had knocked down a light pole and power line into the middle of the street. I was rapidly become late.

When I arrived at the hospital, it started to come down in sheets. Children's Hospital has virtually no parking and definitely nothing convenient or covered. Mostly, you can park on the street. I grabbed a spot and got out of my car to get my umbrella from the trunk. By the time I got my umbrella open, I was completely soaked. I mean, my bra was soaked through and my jeans were becoming an uncomfortable second skin. I had to step in a huge puddle just to get to the trunk, so my feet were wet too. Ugh. The umbrella was pretty much useless since the rain was coming in sideways. To get Charlie into the building I was going to have to unload and unfold the stroller and then get him into it. Then, push him down the street until I came to an entrance. After some quick assessment I decided "no way in hell," threw the umbrella in the car, blasted the heat, and started driving back home.

It was just a check-up. I called and explained that the weather made coming in impossible and they told me to call Monday for a re-schedule. We drove slowly but surely the 45 miles home, listening to our Fisher Price alphabet cd all the way. We arrived with enough time to take a quick (warm!) nap before the OT came.

Not too shabby.

Wednesday, May 14, 2008


I'm at my parent's house. We've got our CT Scan/nuerosurgery appointment in the big city bright and early, so I'm sleeping over here to take some time off the drive.

If you read this on Thursday, say a little prayer that everything is A-OK. Brain surgery is fine and all, but I'd rather skip it if I can.

Tuesday, May 13, 2008


When I was young--I'm not sure how old, maybe six--I stole something. To be specific, I stole a glitter bracelet from my friend. I was at her house, I wanted it, and so I stuck in in my pants (classy, no?) and brought it home. The only problem is that I was racked with guilt. I wasn't ever able to wear the beautiful glitter bracelet because I felt bad for stealing it.

For me, that one incident was enough. I've not stolen anything since. Well, I may have taken a sign off the wall at a Holiday Inn that said "Honeymoon Suite," but I try to be virtuous.

Anyway, sometimes you see things that you want. For the most part, you either buy them or don't. Sometimes, however, things aren't for sale.

Down the street is an unoccupied house. I guess whoever lived there died or moved into a nursing home or something. From time to time I'll see different people cleaning it out--this will often result in crazy amounts of stuff being put out to the trash. The rest of the time, the house is unoccupied. I can only assume that the heirs are sifting through and cleaning out the place either to rent or sell.

In the garden of this house is a stone Pelican. I WANT this Pelican. Sometime in the last month I've sort of adopted the Pelican as my own personal mascot. He's also the state bird, but that's something else entirely. I recently got a wooden Pelican from someone else's trash and I just love it. I think he needs a friend--a stone Pelican, perhaps? This little stone guy calls out to me each day as I drive past.

I'm not going to steal the Pelican--I have that guilt thing, remember? But I do think it's weird that if I were to suddenly develop a life of crime the first thing I'd go after is a stone bird from a dead woman's garden.

So, confess, what's something you'd love to steal? If you were the stealing type. Feel free to stay anonymous on this one--I'm just wondering--what's your pelican?

PS: My big, eco-friendly, clothing-related project will officially begin Monday. I am both excited and nervous about this one. Stay tuned.

Monday, May 12, 2008

Don't Read a Book. . . you know the rest

When you have a new, brain-damaged baby no one can tell you what their mental capacity is going to be. Cognition is a complete mystery and it's something that develops after birth. A child doesn't come into this world knowing how to talk, or read, or do math problems. These are things that are learned. As a teacher I know that much of a child's abilities are developed by their parents working with them, encouraging them, and guiding their natural curiosity. My experiences as a teacher, however, are mostly about those that can see and hear and walk.

When a child has significant physical handicaps it is often difficult to determine exactly how much they know and understand. Sometimes these handicaps make it hard to teach a child. There have been many cases, however, of parents working with severely handicapped children and those children demonstrating an intellect that is on par and sometimes above the par of their peers. Whether or not you can walk doesn't determine whether or not you'll be able to read.

From the beginning, I've felt that Charlie understands what's going on around him. Despite all his issues, my gut said that he "got it." This is by no means hard and fast evidence, but makes me feel a little better.

At our six month evaluation, problem solving was the only area that we weren't behind in. As he's gotten older, he's demonstrated that he quickly figures out how to operate toys. Sometimes, it's extremely difficult for him to operate them by himself, but you can tell that he knows what he has to do (hint: you might have to help him a bit). I know that we have a lot of challenges ahead of us, but I also know that the wheels are spinning in that head of his. My goal is to figure out the best way to guide him, teach him, and show him. Kathryn over at Ryn Tales is a wonderful model of someone who's farther down this road. Her daughter, Ellie, has a pretty involved case of cerebral palsy and at age five hasn't yet spoken. Despite this, she can read 250 words. I would also bet that she knows more about geography than your average able-bodied person walking down the street. Kathryn and her husband have held to the idea that if Ellie can't get to it, then they'll have to bring it to her. They are a major inspiration.

So, where am I going with all this? What is the point of this long, rambling post? Simply, we've taught Charlie his first baby sign: more. He knows it and he's starting to use it with regularity. At this point it's mostly during play, but I know we can expand on it. Those wheels are turning.

Sunday, May 11, 2008

This and That

In the middle of the night I have a million potential blog topics. As I sit here today, though, I've got nothing. I'm thinking anxiously about Charlie's upcoming birthday party--I have got to make some headway on the invitations since I'd like to mail them next week. I've got a guest room that may actually get some guests, so I need to work on that too. Currently, we've been using it as a dumping spot for all the stuff we can't find a home for.

Charlie has a CT scan on Thursday, so we can check the status of his shunt and ventricles. It seems like things are OK, but I guess you don't know until you check. If this one goes well, then I think we'll have appointments every six months as opposed to every three to four. Say a prayer or keep your fingers crossed for that one.

I'm still trying to get an appointment to meet with a private physical therapist. I've now made seven calls and I still haven't got it squared away. Luckily, I've got nothing but time and I'll call as many times as needed.

It's been over a week since Charlie's EEG and I haven't heard anything. I can't decide if this is good news or bad. I tend to lean towards the "no news is good news" school of thought, but I'm still anxious. I'd like to know for sure.

On other fronts, I've got veggies growing in the garden although not very many. My husband jokes that we've got just enough garden for some salsa--we've got two jalapenos and some tomatoes thus far. Our bell peppers and cantaloupe are in bloom, so hopefully we'll have some of those as well. My cucumbers, green onions, and lettuce were all destroyed due to my own novice gardening skills--my bed wasn't high enough and a big rain came and drowned them all. Lesson learned--you need a high bed!

Also, I've got a fashion-related idea brewing in my head and I can't wait to tell you all about it, but I'm still working out the details. Just a hint: it will combine my love of shoes with my new, eco-friendly attitude.

Friday, May 9, 2008

Give A Little

Shannon over at Cerebral Palsy Baby has been a great help and resource to me as I raise Charlie. Her own daughter, Darsie, is an itty-bitty, gorgeous child who happens to have hemiplegia. She is doing extremely well.

Well, Shannon is doing a raffle to help raise funds for the Pre-eclampsia foundation. Shannon herself had preeclampsia, which led to the premature births of both her daughters. For those of you who don't know, preeclampsia is high blood pressure during pregnancy. Women who suffer from it can die or their babies can die. It is extremely serious and for the many women the only cure is to not be pregnant anymore.

Honestly, it's kind of mind boggling that in this day and age, women and children are still dying from from something that appears so simple. If we can put a man on the moon, and live underwater, and give people fake limbs then surely some advances can be made to help women carry their pregnancies to term.

Shannon has all the details on her site here. For as little as a dollar you could win an absolutely gorgeous quilt. I don't need to tell you that a handmade quilt is extremely valuable. Shannon is quite crafty and I know that whoever wins the quilt will be quite lucky. So. . . if you've got a few dollars to donate, head on over.

We Interrupt Our Regularly Scheduled Programming

To tell you that Charlie passed his swallow study today. I thought we were going to have a big problem getting him to eat food laced with barium--I shouldn't have worried. The thin liquid they chose was apple juice. He went after that stuff and actually cried when I took it away. No aspirating at all. Did great on all types of solids too. The therapist at the hospital said she'd have no reservations giving him any food or drink.

The best part: NO MORE THICKENER! I just saved fifty bucks a month.

Thursday, May 8, 2008

Food For Thought

We had one of those crazy days today. First, we had vision therapy, which is a once-a-month deal. Then, the speech therapist called wondering if she could come by today instead of tomorrow since she was having some scheduling issues. I obliged since we didn't have anything going on. He did super with the speech therapist. He's learning to make the baby sign "more" and he kept using it when she played with bubbles. Truthfully, his "more" looks a lot like a left hook, but I'll take it. We worked a little bit on "all done" as well. He's still not making any babbling sounds, but he is making a lot more noise and the guh sound is happening pretty frequently. Also, he participates in reciprocal sound making--she makes a noise, he makes a noise--which is a good sign.

Vision therapy is a little more emotional for me. He did great, though. He attended to the therapist frequently, he showed interest in batting objects, he eye movements looked purposeful for the most part. I even broached the subject of Braille v. print, which is a tough one for me. At this point, I've decided that I'm going to present Charlie with both--we'll let time tell us which one works better for him. We were getting to the end of the session when I remarked that people in stores and restaurants often think Charlie is sleepy. The thing is, when he's introduced to a new place, he tends to close his eyes and take it in auditorily. Also, if you look at the picture from yesterday, he often lowers his eyes some. I don't know if it's a little light aversion or what, but he does it a lot. No matter what, he doesn't ever have that wide-eyed, blank stare that most babies have. If he's looking at something, it's purposeful.

The vision therapist said that she'd given a talk on this very issue at a recent conference. In her opinion, the way you tell others about your child's vision reflects how you feel about it. That, in turn, tells your child how to feel about it. Lie to strangers and you're sending the message that there's something shameful about it. Face it head on, and they'll grow up knowing that it's nothing to be embarrassed about. She recommended saying, "He's blind, but he's listening to everything you say."

So, I'm agonizing a little bit. First, Charlie isn't blind. He has confusing, hard-to-understand vision issues. Second, people aren't asking me if he's sleepy--they're telling me. I used to just nod my head and keep doing my thing. Currently, I just tell people that he's playing possum, which is partly true. Too much noise and excitement and he'll shut those peepers pronto. His father was the exact same way as a baby. He does look around, though, and he'll usually throw a quick glance at whomever is talking to him before returning to gnawing on his hand. Is an explanation really necessary at this point? Am I ashamed or am I just just uncertain myself?

So much to consider.

Wednesday, May 7, 2008

But Seriously

The other day I made a little joke about being a stay-at-home mom. In all seriousness, however, my new position in life has been on my mind recently.

My husband and I had talked for years about me being a stay-at-home mom. I had the perfect job for it--teachers don't make a ton of money, so it's not like we'd be crying over the lost income. Both my husband and I had mothers that had stayed at home (til our teens); it seemed like the logical choice.

As the time grew near for me to actually DO that, however, I found myself not wanting to. I liked my job and my identity was very much wrapped up in the idea of being a teacher. I felt that what I was doing had a lot of worth and I wasn't convinced that serving one child exclusively was as important as serving many. Besides, most of the women I knew had jobs. Hell, check my current e-mail list and you'll find a plethora of professionals. I don't exactly have any mommy-buddies that want to go walking around the neighborhood with me.

I wasn't even sure I liked stay-at-home moms. I mean, I didn't really know any, but I had known stay-at-home wives on the Air Force Base and they did not rock my world. They seemed boring and their interests seemed to stretch to their husbands, their dogs, their nails, and dinner--not too exciting. This was probably dismissive of me, but I was tired of meeting women who said, "WE fly the t-37." I mean, get your own life, right? (Note: there are exceptions to every rule, including this one, but that's not the point of this entry)

Charlie's birth, however, changed a lot of things. I just couldn't convince myself that anyone else could do as good a job as I could. Daycare is fine and all, but he's not going to get one-on-one attention all day like he does with me.

So how did I reconcile staying at home with my belief that a person is valued by the work that they do? Let me tell you, it wasn't easy. I am not kidding when I say that the first three months were hell. I would have moments where I would fantasize about emptying our joint checking and running away (I was going to let him keep the savings). It wasn't that I didn't love the baby or my husband, but the idea that Charlie's entire future rested on my shoulders was just too much to bear. How did I know if I was doing a good job if I didn't get a performance report, feedback, or a grade?!? I'm sure the whole traumatic birth, brain injury, vision loss, cerebral palsy thing didn't help, but I'm equally sure that some of it was just run-of-the-mill post-partum depression.

Slowly, however, things have turned a corner. I am finding things to do with myself and figuring out this new identity. For the first time in twenty-three years, I don't answer to anyone--no one gives me a grade or feedback; no one makes suggestions for improvement. I'm on my own. I have to look to myself for approval or disapproval. I have to figure out what I think success is because no one else is looking over my shoulder.

These days I work very hard to provide Charlie with the best care possible. I also watch independent films, take pictures, grow vegetables, draw, paint, and try to improve my writing (TRY is the operative word). Weekends I used to spend recovering are now passed at concerts and museum exhibits. The pace is slower, but I'm doing a lot of the things I always wanted to do.

Do I worry that people will see me at just a mommy? Of course, but just being a mommy has provided me with a little self-assurance. There will be people who look at me and see a woman with a very small life. There will be people who briefly check out my blog and see nothing but a mommy blogger. So be it. Some of these people are small-minded and some them are jealous. Some of them just suck. If people judge me in an instant, then they're missing out. My life is more than just my husband and my child. Besides, I'm definitely not going to invite them over for margaritas and fajitas which, trust me, is their loss. Point is, I'm happy and mine is the only opinion that matters.

Tuesday, May 6, 2008

Is It Just Me?

I've been increasing Charlie's solid food recently. It's like something clicked in him developmentally, and he's been eating all kind of table foods. We bought a food mill so that we could grind up the foods we were eating to a good consistency, but not everything we eat is baby appropriate--I think he's a little young for enchilada sauce. He's pretty proficient at eating macaroni and cheese, cheetos, and some cooked vegetables on his own, but yesterday he actually projected carrots across the room, so we're not going to try that again this week!

So, today I'm cruising around Walmart (dangerous), looking for baby-friendly food, when I see Gerber Graduates Meals. These little meals look great--a little pasta, a little meat, and some vegetables. No preservatives either, which I love. Only one problem--you have to microwave them. You can't put them in the oven. Call me crazy, but if I'm going to buy my child a nutrious meal with no preservatives, what makes them think I want to radiate it? This makes no sense.

I'm also a little preturbed with Gerber because after stocking up on a cornacopia of mixed fruit purees, I happened to notice the little recycle sign seven on the baby food container. This usually means that the plastic in question is BPA. A couple of weeks ago we went BPA free over here, so it upsets me to see that little seven on the baby food containers. My research (a.k.a. googling crap on the internet) reveals that there is no BPA in the containers. Unfortunately, the plastic is made up largely of styrofoam, which isn't that great either. From now on, I'm going to go with the jarred food. I'm really considering making my own baby food at this point. The only question in my mind is how to store it.

Gawd. I had no idea I was such a hippie.

Monday, May 5, 2008

To Do

To Do List For Tuesday:

  1. Call people about private physical therapy (for the FIFTH time).
  2. Call people about swallow study (for the THIRD time).
  3. Make an appointment with a new nuerosurgeon since our old one is gone (sniff).
  4. Call and make a payment to Children's Hospital before they send our account to collections (I should be more worried about this than I am).
  5. Call the exterminator before the spiders take over my house. Seriously. It's like arachnophobia in this place.

Please don't say the life of a stay-at-home mom is never exciting. I've got full-scale harassment, brain surgery, and the wolf at the door. Not to mention doing battle with eight-legged monsters. This job is not for sissies.

Sunday, May 4, 2008

Closet Weirdness

What She Wore: Teal tank top with a scoop neck and vertical pleats; white capris; bright green strappy wedge sandals with a swirly design on the wedge.

What She Ate: It was a cinco de Mayo theme: cheese enchiladas, enchilda pasta, queso dip, guacamole, salsa, and tostados. Yummy and I took a plate home so I have leftovers.

My last post was pretty heavy and it's hard to find something to follow it up with. Everything sounds a bit fluffy after you've covered infant mortality.

So, I'm going to cover five weird things about me that I should have done last weekend, but got side-tracked and forgot.

  1. I think baby spit smells good. I am NOT a baby person, I don't want to hold your baby, I don't revel in the smell of baby powder, or any of that stuff. For whatever reason, though, I think baby spit smells good. I'm a freak--you don't have to tell me.
  2. I don't like chocolate. I don't HATE it or anything, but I don't care for it either. I do like peanut butter eggs at Easter time, but that's about it. My taste in sweets runs more to Gobstoppers and Skittles.
  3. I eat very few white foods. I don't eat butter, mayonaise, eggs, cottage cheese, or yogurt. It's not about the color, though, it's about the texture. I think foods should have to pick--solid or liquid. If they're somewhere in between I usually don't like them.
  4. When I got to college I'd never washed clothes or loaded a dish washer. My mom washed all the clothes and my dad did the dishes. I actually had no idea how long it even took to wash clothes. I thought it was this long, involved process that took days--I had no idea you could get it done in the afternoon. I felt like superwoman the first time I washed clothes.
  5. I was in, or caused five car accidents before I turned eighteen. I got my license at fifteen and got in three accidents in a year. My insurance was HIGH. My boyfriend crashed his car when I was sixteen, and then I got in another wreck when I was eighteen. It's a wonder I'm still alive.

Ok, I don't think any of those are re-peats, but who knows?

Friday, May 2, 2008

The Other Charlie

Ok, this is really long, but completely theraputic, so if you don't want to read it then don't. . . I feel better for writing it.

The day they told us that Charlie had stroked was the most surreal day of my life. I was loaded up on pain killers and still in a wheelchair (you can't walk right after a c-section) when they rolled me into a little room, introduced me to a social worker, and told me that Charlie was most-likely going to die. They aren't the best memories, but they're here to stay. After some time to process what the doctors had said, we headed to the waiting room to find out the ins and outs of staying at the hospital: reserving your pull-out chair/bed in the waiting room, procuring parent badges, and getting directions to the cafeteria. The brisk efficiency of the waiting room attendant sharply contrasted with the dull, swirly feeling in my head.

Charlotte's parents showed up a few days later. They had that dazed look about them and you knew that their universe had just engaged in some break-dancing. One glance and you knew exactly what they were feeling because you had been them two days before. This couple, however, had a strength about them that I know I never had. They showed up at that hospital and they wouldn't leave. I remember that Charlotte's father didn't have any socks for two days because he'd arrived up in sandals. They kept our floor ice cold, as well, because heart babies need to be kept cool. One night my husband and I bought him a ten-pack of socks at Walgreens because we knew he'd been freezing without them. Despite this, he hadn't left his little girl's side.

The day Charlotte arrived, Charlie got a little dot next to his name on the hospital boards. We asked why and were told that with two patients in the same unit with names that similar, the dot was a reminder to double check everything. Charlotte was place on ECMO just like Charlie. I felt as if they were kindred spirits: the two Charlies. Charlotte had different complications than Charlie--her brain didn't bleed, but her kidneys took a beating. The doctors couldn't figure out what was wrong with her and she had a litany of tests. She was placed on the transplant list and then removed when her heart began to regain strength. I would not be exaggerating if I said that about a hundred people traipsed through that waiting room to visit her family. Charlotte's christening looked like a formal church function except that most of the visitors wouldn't get to see the guest of honor. At times, it felt like the entire state of Arkansas was praying for the tiny girl with the long lashes. One night Charlotte's parents posted a prayer request for the two Charlies on their Carepage--I felt a surge of gratitude. With all the prayer-power behind that family, I knew Charlie was in good hands.

Even though my child was in the hospital, even though I knew that his heart had failed and his brain had bled, I was still naive about the place I was in. I never believed that a little girl so loved, so prayed for, wouldn't make it. I'm wiser now, but truthfully, I'd rather if I wasn't. It was just one of those things that can happen in a medical environment: an infection. One day we were smiling and laughing with her parents in the halls on the way to the cafeteria, and the next day she was gone.

News of Charlotte's rapid decline spread quickly on the floor and I was sick with the news. If she didn't make it, then what hope was there for my son? He was physically there, but was that enough? My faith, which had been rock-solid until that time, wavered a bit that night. Later in the evening, we had to call an on-call doc to give Charlie a check-up because he seemed out of sorts. This man, who I will never forget, took one look at Charlie's chart and then marched in full of gloom and doom prophecies about babies who had brain bleeds. He didn't even look at Charlie as he talked about children who "seized all the time" and who were in bad mood because "they had brain damage." At this point I hit rock bottom. I packed my things and left my mother-in-law in charge. I'd been living at the hospital for about two weeks and if I spent one more second in that building I would have had to check myself in as a patient. I felt as if no one would ever look at my Charlie as a human--just a diagnosis.

In the elevator I saw Charlotte's mom with her family. Her blue eyes were bright with tears and I knew instinctively that they'd been in the chapel on the second floor. I also knew that if she'd left Charlotte's side at this critical time then things were probably at their worst. Charlotte's mom looked at my own red eyes, and asked me, "what's wrong?" As I type this, I am in awe of her strength. Her own daughter was dying and she asked me about my selfish tears. I also feel like a complete ass for having the nerve to cry when my child was still living, but you can't change the past.

Charlotte's mom still posts occasionally on her Carepage. Recently she left a message talking about Charlotte's birthday. I believe she was born at the end of May. She talked about how hard it was. It's hard for me too. Of course, not in the same way, but still. . .

Why do some children live and some children don't? I wish I knew the answer. Hell, I wish I had a clue. Charlotte is gone and my Charlie lives. He took so many hits. His odds of making it were so small that I'm glad I didn't know them at the time. He's got issues: physical, verbal, visual.

I don't know why some children make it and some don't. After a year of thinking about it, I'm no closer to the answer. I know this, though: her parent's strength was a gift to all of us in CVICU. They were models of faith and courage and empathy. They never stopped asking other people how they were doing. I never saw them give in to self-pity. Their belief was something that we should all strive for. We can't ever know God's ways--he's working on a thousand year plan and we can only see the smallest slice. What I do know is this: Charlotte's family is my role model. I want to be that strong. I want my faith to be that pure. I know that I am not alone. Charlotte's life, however short, blessed those of us on the very outskirts of it. In just a few weeks she touched many lives. How many of us can say the same? Was that her life's purpose? I wouldn't even dare suggest it, but I for one am glad that she was here for even the briefest moments.

Thursday, May 1, 2008

Will This be on the Test?

Charlie's OT came today and we had a bang-up session. We worked on feeding, which we haven't done in a while. She saw lots of improvement. He's sitting in his high chair more easily, he's doing just fine with baby food, and he did well eating pudding and a cheeto with her. She said she's seeing real improvement in his chewing strategies and likes that he's trying to self feed. I asked her about the fact that he gets food stuck up on the roof of his mouth. She put her finger up there and said that he has a high, narrow palate--some of that is probably the result of being intubated. As his tongue gets stronger, that should improve and she told me to just give it a little sweep when he's eating. Ahhhh, the joys of motherhood.

We also tried different cups, which was just fun. Charlie loves grape juice the way some people love beer. He grabs gleefully at the cup and tips it back, half the juice running down the front of his clothes. He smacks/savors what does make it into his mouth and then swallows. He then immediately tries to take another sip. I think it's pretty fun watching his abandon when it comes to drinking. Surely this will make him popular in college.

The other major news was the unveiling of the Rifton chair. My OT managed to get one from somewhere--she's like an equipment yenta or something--she borrows from this family, digs around in the warehouse where she works, and viola! She's found a two-hundred dollar chair for you to use. She fixed this one up with a stiff cardboard back to provide a little more support. We're supposed to use it every day, which shouldn't be a problem.

Finally, for homework, we've been instructed to keep a food journal this week of all the table foods we try and how he reacts. This should be interesting. I've never been especially good at assignments; 90% of my academic career was spend furiously scribbling stuff down five minutes before class started.

I can't believe it's only Thursday--this feels like the longest week ever.