Tuesday, January 27, 2009


Well, I've been trying real hard to take some pictures that document Charlie's progress, but that's easier said than done. I tend to delete pictures I don't like, so I don't have a ton that would be good for comparison's sake.

Here are the changes I've noticed in Charlie's body:

Charlie's neck has made the most changes. His Adam's apple has moved down and rather than being under his chin it's now at the very top of his neck. I'm starting to see all the veins and the shunt in his neck and he does a much better job of picking up his head while on his stomach. I can't wait to work on the back half of his neck!

He's lost one of his eyes here, but you get the picture.

His abdomen has made major changes too, but it's hard to really capture that in a photograph. His ribs used to be almost pointed at the bottom of his rib cage--the whole thing looked like a diamond. Now, he still looks like a rounded diamond, but that's still an improvement. The big change in that area has been how much flatter his chest has gotten. The bottom of his rib cage used to be the highest point of his abdomen. Now, it's flatter and more balanced. When I pick him up I feel how much stronger he is. Best of all is the un-measurable: sometimes Charlie will be sitting in some one's lap and he looks complete and utterly normal. I think all special needs mommies do that thing where we stare at our child and wonder if they're "passing" for normal at a given moment. Usually, Charlie is close. Sometimes now, however, he's dead on--even his eyes. I can't quantify it, but it sure is awesome.

The final area we've been working on is the jaw/larynx area. I struggled with this area--first I had the position wrong, then I had trouble with Charlie waking up when I tried to do it. Plus, it was uncomfortable. I e-mailed the peeps at ABR and some other parents, did some fiddling and things got better. Then, I bribed myself: I buy current episodes of One Tree Hill on iTunes and I only let myself watch them when I'm doing Jaw/larynx.

I finally saw a change after putting in some hours. I think it's from the jaw/larynx exercise, but I suppose it could also be the neck. Anyway, his tongue is changing. Since I took Charlie home from the hospital, he's had a forked tongue. Sounds creepy, but it's not that bad. Charlie's doc keeps asking me if I want to snip it, but it doesn't seem to be causing any problems, so we're not snipping anything right now. Well, it looks different sometimes now. The center part is still tighter, but he seems to have more control over it and sometimes it doesn't look forked at all. His speech therapist agrees, so I'm not crazy. Well, I may be crazy, but not about that.

Christmas photo.

Here's a picture of us doing an activity with drawers--namely, how to open them, and what goodies may be inside.

As a final note, I'll add that after two Feldenkrais sessions, Charlie lunged for something with his right hand. This is pretty unusual since he favors his left side for almost everything. If he does use his right hand it's usually for support or help--not the lead hand. It could be a fluke, but I feel like I should write it down for posterity.

Busy Busy

Well things are busy in a good way. I don't have any funerals to attend or any hospital visits on the horizon, so things are looking pretty good.

Days are full with regular therapy, ABR, Charlie's intellectual program and now two Feldenkrais appointments a week. Some days I barely get on the computer, which is crazy for me.

I am working on designing some stationary, which is both thrilling and frightening. It's thrilling because I can't believe I'm actually doing it. It's frightening because once I've finished designing it, I'm going to have to stomp around and try to convince store owners to carry it. I am SO scared to try this, but I realize my anxiety is probably worse than the rejection would be. Besides, rejection isn't fatal, so I just need to stick my neck out. SCARY!!!! I'd like to eventually have my own web site where I sell my designs online, but for now I'm just trying to see if a market even exists for what I'm doing.

I'm going to try to post my designs up here real soon. I'm working on birth announcements/shower invites with coordinating thank you notes. I've scouted out several places that might carry them and have even scoped out some of my competition.

I'm planning on taking some pictures of Charlie to show some of the changes I've seen, so stay tuned. . . things are happening over here.

Friday, January 23, 2009


Well, we went to our first Feldenkrais appointment today and I thought I'd share.

The lady practices all the way down in the Quarter and I got a little bit lost on my way down there. Luckily, my little brother is a wiz at directions and got me there almost on-time despite my wanderings.

The woman was very nice, with long hair, a flowing dress, and bare feet. She had a black standard poodle name Boogie who hung out with us.

I can't really explain Feldenkrais even though I sat there and watched the entire session. It's kind of like she's stimulated different muscle groups with massage, but she's also moving him through various movement like yoga. She described Feldenkrais as "educational."

She feels strongly that Charlie will benefit from multiple visits a week since that is what is recommended. He normal rate is seventy-five dollars for a visit. She is going to charge me that for our weekly visits, but if I'm able to make it over any additional times during the week then she'll only charge me twenty-five dollars for that session. I get the impression that she's excited to be working with Charlie.

I got lost coming home too. I'm definitely going to need to spend some time with a map if we're going to be going there regularly.

I'll admit that I'm apprehensive about this new therapy. Mostly, because it's a lot of money and time. Charlie seemed to enjoy it, though, and I've decided to give it six months and I'll re-evaluate then. For now, I'm jumping in and giving it a try.

Thursday, January 22, 2009


If I'm being completely honest then I think I would say that I'm missing my grandfather. There's a big part of me that just hasn't accepted that he isn't here anymore. Yesterday I went with my mom to his apartment and we both just started crying. It was as if, up until that moment, we could believe that he was still there. . . sitting at his desk. . . doing a crossword puzzle.

We were cleaning the place out and I found this picture of Charlie that my mom had sent him on e-mail. He'd printed out and put it in a frame.

Makes me wistful. . .

We can't live forever, and he lived a good, full life. I'm not sad for him. . . I'm sad for me.

He's gone and there is a hole where he belongs.

That's just how it is sometimes.

Monday, January 19, 2009

Good News

I have good news. I've been kind of a downer recently, but really, life goes on and good things do happen.

My husband has been offered and has accepted a really wonderful opportunity. First, let me say that the ends have not met at my house for the last fifteen months. It was a decision that my husband and I made and we don't regret it. We used savings to cover the difference and we've been fine. Now, finally, I think that we might--MIGHT--be able to tie those ends together. That doesn't include Charlie's ABR bills, but we've been getting lots of family love on that score, so things are pretty good there too.

The best part of the job, though, isn't the money--it's the opportunity. My hubby bumped into a guy at Smoothie King who's in the process of building his own engineering company. He's looking for a right-hand man and thinks maybe my husband could be the guy. He was looking for a guy with a ton of experience, but he loves that my husband is former military, and is deciding to give him a go. There's the possibility of partnership in the future, which is huge AND the guy is paying our Cobra until he gets group health insurance in place for his company.

So there it is. Good things happening here in Bird Land.

This is one of my all-time favorite pictures: my grandfather and his brother dressed to attend college at Tulane University (gramps is on the right). The chains on their vests hold club pins--my grandfather's is for the debate team.

Sunday, January 18, 2009

In Defense of Housewifery

If I'm being completely honest then I will admit that being a stay-at-home mom was never on my list of things to do in this lifetime. My mom stayed at home while I was growing up and I could never figure out just what she was doing. My dad had a clear title and job and then there was the fact that he actually made money. Money equalled value. My parents raised me to be anything--teacher, lawyer, accountant, artist. They never mentioned housewife. As a military spouse I met women who didn't bother getting jobs. Their husbands were moving around frequently and the pickings are pretty slim in many base towns. Again, I couldn't figure out what the heck they did with their time.

Charlie and my brother on a trip to the zoo.

Even before Charlie was born, I wasn't real keen on the idea of staying home with him. His birth changed things significantly, however, and I decided that nobody could teach and care for him better than I could--at least no business could. So, home I was, but a part of me hated that and felt that I'd wasn't doing enough.

This past week opened my eyes a little.

Tuesday my mom called a friend of hers and told her, "my dad died last night--do you wanna go to lunch?" The friend of course went to lunch, and then she didn't leave my mom's side for the next three days. She went with her to the funeral home and helped with arrangements. She came over and ate pizza and just sat. She went with my mom to meet a Methodist minister. The day of the funeral mini-king cake pastries appeared in the kitchen and after the funeral she brought ham, cheese, rolls, and carrot cake for the people who gathered at the house. When everyone left, she cleaned up.

This is a woman who has never had a job. She has no resume and doesn't even know how to write one. She's a smart woman with a college degree in engineering, but she dedicated her life to her family. As long as I've known her, she's volunteered at her children's schools and with other civic organizations. She brings the perfect food for a party, throws many parties herself, and shuttles elderly relatives to and from their appointments. Her life is far from glamorous and isn't even really a life that I would choose for myself.

I can't deny that it has value, though. Many people have benefited from her generosity of spirit and her devotion to those around her. I've been short-sighted; there is value to caring for others, to keeping a home and a family. There's no money in the deal, but at my advanced age I think it's about time I realized that money and value aren't necessarily one and the same.

So, I'm trying to change the way I look at my current situation. Rather than bemoaning the drudgery of housework, I'm going to try to look at it a little differently. I'm part of a great tradition, and maybe I should try to live up to that a little bit better.

A picture of my grandpa, his older brother, and his father in Galveston, Texas, in 1920. I love the outfits.

Thursday, January 15, 2009

What's New?

Well, things are largely occupied by my grandfather's funeral tomorrow, but there are other things going on in my life. No matter what happens, life does go on.

I've decided to go ahead and purue Feldenkrais therapy. I contacted a woman I found through the national website and we clicked. She's more interested in helping than in money, so the big issues will be how often I'm willing to drive out to see her as opposed to cost--whew! I had one of those "signs" as well about Feldenkrais, which has only furthered my desire to check it out. I've been reading the book Escape about a woman who was born into a polygamist cult and eventually decided to escape. She dedicates a few sentences to her son with special needs and it just so happens that she is pursuing Feldenkrais therapy for him. So. . . I decided it was meant to be. In case you're wondering, the book was VERY interesting.

And then there's my art. I come up with a couple of designs that I'd like to put on stationary and maybe some baby apparel. I've also done a series of artwork for nurseries. I spent a lot of time trying to figure out how to turn my artwork into the right types of files and have finally decided that I will save myself a ton of headaches if I just hire a graphic designer for the technical stuff. I have absolutely no problem with ideas and even with making sketches and artwork--my problems are with stuff like changing colors and sizes. I'm hoping that I'll be able to show you some of my designs within the next thirty days, but we'll see.

Other than that, I'm just plugging along and trying to keep my head above water. Things have been pretty crazy since Christmas and I'm sincerely hoping that they are going to calm down sometime soon. Honestly, if they don't calm down soon I'm going to have to go hit up the doc for some prescriptions because my stress levels are getting a tad high.

Tuesday, January 13, 2009


Well, my grandfather passed away last night.

We've known it was coming, but I think that I can honestly say that I haven't accepted it yet. I'm still thinking that we have a little more time. My mom is clearly devastated and her brother is very flat. My mother's mother died when she was very young and it's been just the three of them for a very long time. I'm pretty much just sitting around trying to fill the silence and do whatever needs doing.

I started a project about a month ago where I began scanning my grandfather's pictures into my computer. My intention was to create a book that contained all the pictures with spaces so he could write down any recollections. I think I will continue the project because it's like a piece of history. He lived in New Orleans before things like suburban sprawl and the interstate. His father belonged to one of the oldest social clubs in the city and so did he. He attended Tulane University and ate at Commander's Palace almost a century ago. His ties to this city are part of me and part of my attachment to New Orleans.

He's the small one on the left.

I am so glad for this time that I've had with him. I lost my other grandparents almost ten years ago at a time when I was just beginning to appreciate them and understand their unique value. While I am saddened to lose him, I know that he is in a better place and that he lived a full life.

This was probably a completely incoherent ramble, but sometimes that's all you've got!

Friday, January 9, 2009


I know some people are here for the Charlie news and there hasn't been a whole lot of that lately, so I figured I'd update.

Charlie is now nineteen months old. I don't know how he got so old, but apparently time is not standing still and he gets older every day.

Sometime in the last month or so Charlie decided that he'd like to be independently mobile. He commando crawls everywhere. Before it was a couple of yards, but now he's just truckin'. I'm right on the edge of baby-proofing my house because one minute he's playing with his leap frog table and the next minute he's three yards away and chewing on my purse. I'm completely delighted and love finding all the funny situations that he gets himself into with this new-found mobility. I wasn't completely sure this day would ever get here, so it's doubly good.

Charlie is also developing some other behaviors that I am less crazy about. He is shrieking and shouting all the time. My husband is thrilled, but after about an hour of his little chants I start to get a headache. I know, I'm a terrible mother, and I'm really glad that he's making noises and communicating and all that, but OH MY HEAD! It's like he's a chatty two-year-old, but with no actual words just ah! uh! arrrrrrr! heeee! guh! gah! Please pray that he gets some communication skills soon. Please?

Also, Charlie has been recovering very slowly from his last illness. He tires out in the middle of his therapy sessions sometimes even cries which is not like him at all. He's gaining strength, but it's hard on me when it's hard on him.

I guess the final bit of news would be to say that I we are thinking about trying yet another wacky, alternative therapy. The therapy is called Feldenkrais and a woman we met in Canada raved about the results that she'd seen in her child. Most of us ther were doing traditional therapy and I have to say that her kid was a Feldenkrais kid and he looked really good. It might be a coincidence, but I'm thinking about checking it out anyway. So far as I can tell, it's a method of gently moving the body to teach the brain new movements. I'm not sure about the lingo, but I do know that Charlie does well when you guide him through movements you want him to do. He continues to make progress in traditional PT, but I'm curious about this and willing to check it out. I found a woman who does it in our area and her rates are reasonable, so I'm going to try to set something up. Also, I'm thinking about cancelling our private PT. I've been pretty disatisfied with the situation there for awhile, and if I cancel that then it would probably free up our schedule for Feldenkrais. I guess I'll just have to figure it out. We'd still have two days a week of PT plus all the PT we do ourselves, so I don't think he'd be missing out.

So, there's your update!

Wednesday, January 7, 2009

Spa Day

You know, Americans these days seem to be a little obsessed with cleansing. We pay people to scrub our faces and our bodies and even our auras.

So it's no real surprise that my colonoscopy was the equivalent of a spa day for me.

I did have to survive the torture of preparing for it, though, so I deserved a little break.

To prepare to get a colonoscopy you have clean out your entire digestive tract. The day before you can have hard candy and clear liquids. Gobstoppers and diet coke do not equal a breakfast of champions. Then you have to take laxatives. Then you take a super-laxative drink that's pretty freakin' disgusting. My version was called MoviPrep and I drank exactly half as much as I was supposed to and it took be four times longer than it should. It was totally disgusting and about half the time I thought I was going to just throw it up.

The colonoscopy itself wasn't bad, though. The nurse did a bang-up job putting in my IV and it wasn't painful at all. They covered me in a pre-warmed blanket and I got to lie down and nap both before and after. My mom drove me home and I slept the rest of the morning. For a woman with a small child with special needs, an excuse to sleep all morning is pretty much the best thing that can happen to you.

As for my results. . . don't read on if you're squeamish. . . hemorrhoids that are too high up to be seen during a regular exam. That's pretty much the best possible diagnosis given my symptoms.

So, to review, Moviprep BAD, colonoscopy GOOD.

Sunday, January 4, 2009

The Santa Clause

I made a decision ages ago that I didn't think was a big deal at all.

I decided that I wasn't going to tell my child about Santa Claus.

I think Santa Claus is nice and all, but the idea of the whole thing just doesn't appeal to me. I am NOT being judgemental about the bazillion people who love Santa Claus. I'm just not comfortable lying to my child and I hate to think about the day of disappointment where he discovers that Santa isn't real.

I didn't make a big announcement about the whole Santa Claus thing and I was a little surprised that it came up, but it did. The conversation started with everyone wanting to know why I wasn't doing Santa Claus and quickly devolved into these sad stories about the moment when everyone discovered he wasn't real. It's strange--people love the idea of Santa Claus, but finding out he isn't real is a pretty tough moment.

So, I'm gonna skip it. I'm going to TRY to focus on God's gift to humanity, doing for others, and all that. I can see about a million ways that this plan will go awry, but it's what I'm sticking with for now!

Friday, January 2, 2009

Writing When You Don't Feel Like It

I feel like death is following me around.

It isn't, of course, but I'm still feeling the presence all around me.

My grandfather was given six months to live a while back and his health started to really decline in the beginning of December. He doesn't want to eat and his hospice care taker thinks that he pretty much needs to stay in bed. When a man is as old as he is, you know he's going to die. That isn't making it any easier on my mother. Truthfully, I'm more worried about her than him and I worried the whole time I was lying around the hospital with Charlie.

Then, yesterday, my SIL's father died. She's only like twenty-five and her mother died at this time of year last year. I know they were a little older, but neither of them were seventy or anything. He was here one day and the next day he was gone--they suspect he had a heart-attack while driving. I feel terrible for her--she has one brother and the two of them are going to have to deal with things like inheritance or probate, funeral arrangements, selling his house, and who knows what else. Yuck, Yuck, Yuck.

I'm a pretty faithful person and I don't worry about people after they die. I do spend a lot of time worrying about everyone else, though. Death is always an icky process whether it's quick or drawn-out. There are so many details and I can't imagine trying to handle them when you've got a huge loss to process as well. Even if you have a lot of faith, I think death is hard on the living both emotionally and mentally.

What a great holiday.

On a lighter note, I guest posted over at Ellen's and it should have gone up yesterday (Jan 1st). Check it out!