Friday, November 30, 2007
I'll be brief today. My mother had open-heart surgery and I'm off to see her in the hospital. I'll just ask a little question. My uncle wants to go see the medium/masseuse. He wants to know if any dead people will appear while he's on the table. We all took bets as to which dead person might show up. How about you? If you went to the medium/masseuse, is there someone you think might show up? I like to think my grandma might pay me a visit, but who knows. . .
Thursday, November 29, 2007
I keep going to our new house and opening boxes. Notice, I said opening--not unpacking. I get the thing open and I think, "why the hell do I own this crap?" Box after box, I'm wondering why I have so much stuff.
I've found some fun items--love letters I sent my husband years ago, post cards I sent from Europe, a pep-talk I wrote when the Hub lost his pilot's slot, a list of things to have accomplished by 2007/2008. That last one is hilarious. Those things are little treasures.
By and large, however, I'm finding crap. After four months of stepping over piles of stuff to get around, I'm longing for some wide-open space. I need some breathing room, and this house is even smaller than our last. I open a box, take out a few things, and deem the rest to be junk. I'm feeling a serious purge/garage sale coming on. Starting fresh before my old ways force me to keep all this stuff: books I don't read, shoes I don't wear, dishes I don't use. What's the point in hording all this business? Who knows. I do know that I've lived four months without most of it, and there's no time like the present to get cleaned out.
Wednesday, November 28, 2007
Ok, I'd like to act like yesterday's post never happened--major blonde moment there! Oh well, I'll probably recover.
I feel like my life is moving in fast-forward, and this posting every day thing doesn't help. I would like to share something today, though. You know how some bloggers are kind of famous? You know the ones that a lot of people read? Well, Billie is one of those bloggers. She had two twins born extremely premature. She documented their NICU stay on her blog and their subsequent growth. They are now three years old (I think). Both of her daughters developed cerebral palsy as a result of brain bleeds. One has mild CP and the other moderate. I found her blog not long after Charlie was born and I check it regularly. It's filled with detailed information about the girls, their issues, their doctors, their therapies, etc. I consider it a major resource.
Recently, Billie was asked by another super-blogger to participate in a round-table discussion about grief. She had not, however, experienced a literal death. Her grief is not unlike mine--she grieves for the children that might have been--the children with perfect health. I'm not going to talk about that again, though--at least not today. I'm just going to comment on one little thing.
Many of the people who talked about grief mentioned a certain phrase that they hate hearing: Everything happens for a reason. I feel compelled to comment on this phrase--I've used it and heard it, and I think it bears a little examining. Why would someone hate this phrase so much? I think, because it places blame in a round-about way. If everything happens for a reason, does that mean that someone is to blame for what happened to my child? Or to Billie's? What about the little girl who died while Charlie was in hospital? What was the reason for that tragedy? I think the word "reason" over-simplifies things. I think that people mean to say that we can't explain God's ways, but the way it's phrased doesn't make sense. Is God trying to teach someone a lesson? Me? My child? I just don't think God works that way; I don't think God is in the business of standing on a cloud, orchestrating "lessons" for each of us. I prefer to think of the whole thing as bigger than that--beyond my comprehension. I like to think of it as those pictures people make in stadiums--where each person is holding up a card of a different color. Mine may be white and Charlie's may be blue. I don't know why we each got the color that we did, but I know that it all makes sense from up above (lets just hope it's not like this).
I think my husband puts it in a way that makes a little more sense to me. Charlie is perfect. He is just the way God intended for his purposes--not anyone else's. Perfect. Doesn't get much better than that, does it?
Tuesday, November 27, 2007
Sometimes people are just completely wonderful. You just never know where the next blessing is going to come from.
My mother and father both get messages from the same lady. She's also a medium--completely random, I know. The masseuse/medium. She'll see dead people while she's messaging. I don't see NBC making it into a show anytime soon, but it is interesting. Anyway, my mother has been telling her all about Charlie ever since he was born. This week she offered to message Charlie twice a month for free! She says that she just wants to do her part. The doctor has Ok'd it, so baby Charlie will now be getting a message twice a month. By January he'll have had more messages than I have in my entire life.
Wonderfulness can come from the most unexpected places.
Monday, November 26, 2007
Well, I'm in box heaven now. It took the movers four hours. The police ended up blocking off the street since I live on one of the busy streets in my small town. I'm like a movie star or something--gotta have a police escort to move in!
I've got about five thousand ideas for sprucing up the place, but I'm going to have to get some focus--which project do I want to do first? The budget is tight since I'm not earning any money right now, so I've got to think smart. What to do first?
I know some people have asked for pictures and as soon as I get a new battery for my camera I'll put some up. Sorry I'm writing so little these days--this blogging every day thing is tough when you're moving.
Sunday, November 25, 2007
Saturday, November 24, 2007
I spent all day working at my new house, and I'd like to introduce you to my mortal enemy:
THE BORDER THAT WOULDN'T DIE!!!!
I spent eight hours and I'm a little over half-done. Looks like this is going to be a long-term project.
Those aren't my knick knacks, by the way. This is a picture I took when we first looked at the house--the place is a complete wreck right now.
Friday, November 23, 2007
My mother loves people of all kinds. She relishes every detail about people that she's never met. It was with great interest that she told me about a little baby that was born right around the same time as Charlie. This little baby has spina bifida--this is a severe condition in which a baby is born without a complete spinal cord. The baby is often paralyzed and most have hydrocephalus. My mother didn't actually know the couple who had the baby--she heard about it all from her hairdresser. Still, she was very interested in this little boy.
This past week my mother got to meet the little baby's grandmother, who gets her hair cut at the same place as mom. They talked about their grandbabies, their shunts, their surgeries. Then, the other grandmother relayed a story to my mother that just horrified me.
Spina bifida is usually diagnosed in utero, so the couple knew before he was born that their child would have a lot of issues. They were interviewing pediatricians trying to find someone who could help them with their child. Upon calling one doctor and asking if she handled any children with spina bifida the doctor replied, "No, I don't have any of those. Everyone I know who had a child like that had an abortion."
Can you believe that? A write-off and a moral judgement in just two sentences. Any person who refers to children with disabilities as "those" should be sent to a sensitivity workshop or twelve. Children with disabilities are still children and still need medical care.
Luckily, the family found a fabulous pediatrician for their baby--one whose sister has spina bifida. In the mean time, I'm glad I'm a great believer in karma.
Thursday, November 22, 2007
One super-cute baby ensemble for his first Thanksgiving: $45
Turkey, ham, and trimmings for thirteen: $200
One ridiculously huge pimple recorded for posterity: priceless.
Hope your holiday was fabulous.
Wednesday, November 21, 2007
I'm at my parents house in the middle of pre-Thanksgiving prep. Basically, I do whatever the Hub tells me and he does everything else. Big dinnner tomorrow--we're cooking for thirteen!
Other than that, it was another exciting day of peeling wall paper and a mega-sized nap.
Wish things were more exciting, but it's the day before Thaknsgiving--there's only so much you can say.
Tuesday, November 20, 2007
Spent more time today peeling wallpaper--I should take a "during" picture to show the gigantic mess that I'm making. I'm making some discoveries about my little son as well.
When objects dangle in front of Charlie he waves his arms around, but doesn't make very much contact. He sort of looks like a deranged cheerleader. I was starting to wonder if he was trying to get them or if I was just imagining it.
Well, I shouldn't doubt the little guy.
The Vision Therapist taught us how to set up stations that made using vision easy. Basically, we hang brightly colored things VERY close, so he has a chance to reach them. My mother-in-law is a pro at this kind of stuff, so she bought one of those jingle bell things that people hang on their door knobs during the holidays. She suspended it from the kitchen counter and placed Charlie in his chair very close.
He starts waving his little arms.
Again and again.
Then, he made contact!
I got a view of his personality--determined. He will try and try until he hits that jingle bell and exibits far more patience than I could ever muster.
He may have challenges ahead of him, but I have no doubt that it's that determination that's gotten him this far.
Monday, November 19, 2007
Well, I don't have much to report. I paid our utility deposits at town hall which is an adorable little building. I spent a nice chunk of the day peeling wall paper in the hallway of my new house. Since I'm laboring under the mistaken belief that people who read this blog are interested in my home decor, I'm including a "before" picture. Hopefully, coming soon will be an "after." Don't tell me if you think it looked better in the first place--I'm not interested in the truth.
Sunday, November 18, 2007
Yesterday the Hub and I went and visited our new home with one of his oldest friends who just happens to be contractor. We walked all around, looking in closets, discussing the possibilities, talking about where the furniture would go. The man who owned the house before was seventy-eight and had retired there with his wife eighteen years ago. She passed away several years earlier, and he was moving to a condo to be closer to his children. He was the neighborhood handyman and kept the house in excellent condition. He left a bunch of stuff when he moved out too--mirrors, decorative items, cleaning supplies, trash cans--little clues to the person he was and the life he lived.
While digging through the cabinets I found two bottles of scotch and a bottle of Jack Daniels. They were clearly very old--they had tax stickers on them that none of us had ever seen. We also found one small shot glass. So, we cleaned the shot glass (thanks for the cleaning supplies!), filled it up with Cutty Sark, and said a little toast: To us. To our new life in our new home and to the man who kept and cared for this home for so long.
It was a good moment.
Saturday, November 17, 2007
I don't have much to say, so I'll answer a question that Antonella asked. She asked if the stretches we do with Charlie will reduce his tightness. It's a good question. For the most part, the stretches are to try to prevent further tightness. Right now, I am seeing some reduction in the tightness, but I think that's mainly since we've never really stretched him much before. Unfortunately, as Charlie gets older, and grows, those hamstrings will likely get tighter and tighter. That's why an oral muscle relaxer will probably come into play or maybe a shot of botox when he gets older. Many kids with cerebral palsy are "toe-walkers," and it takes braces and/or physical therapy to get them to walk correctly.
At this time, we are very fortunate--our main issue is hamstrings. There is some extremely mild involvement in his groin and triceps. So little, however, that the doctor doesn't even think stretching is needed. As for what the future holds, who knows, but we try to stay hopeful. Doctor after doctor have commented on how good he looks, and I can't help but think that that's worth something.
Friday, November 16, 2007
How freaking embarassing is this?
Last night, Charlie cried for three straight hours. Not just crying--blood-curdling screams. He would briefly fall asleep and then would wake up screaming his head off again. This is not at all like him, and we have a lot of body systems (heart, brain) to worry about, so after a couple of hours I started to get a little nervous. My mom decides to call the pediatrician. The only problem? I'm at her house, and we don't have the number. So, she calls information, and gets a number. She dials. IT WAS HIS HOUSE PHONE. We woke up the doctor at eleven-thirty at night because we had a screaming baby. He was so out of it he didn't even know which baby we were talking about, and I've seen him twice this week.
In my mom's defense, she specifically asked the operator if this was a listed number. We were just trying to get an answering service or the on-call doc--not wake the poor guy up.
How am I ever supposed to go back to this guy?
Thursday, November 15, 2007
Nadine tagged me a few days ago, and somehow that slipped my mind, so today I'm going to ahead and do it. The tag is for me to share eight random facts/habits about myself. My whole life seems random these days, so I don't think it will be too hard.
Here are eight random things I'm thinking about that have nothing to do with Charlie
- My mom is having open-heart surgery at the end of the month. She can't drive for five weeks after that. Any guesses what I'll be doing the month of December?
- My birthday is next week, and I'm inching dangerously close to thirty--ack!
- My husband, who's a really nice guy, will only buy me a gift if I pick it out and show it to him. I haven't picked anything out for my birthday, so I guess I'm not getting anything if I don't get a move on.
- Tonight I'm working at a benefit/silent auction at a place called the Savvy Gourmet. I'm glad I'm going to be working because otherwise I'd be eating WAY too much.
- Tomorrow I'm going to talk to a group of elementary school teachers about how to identify students with dyslexia, and try to remediate them. It will be nice to be in the school setting for a little bit.
- My dad has "hired" me to decorate a condo he's purchased and wants to rent furnished. Spending someone else's money on decorating? Sounds like serious fun to me.
- I've finally started exercising. I'm just walking, but something is better than nothing.
- I haven't done one thing about getting registered for that art class. Better get a move on!
In Charlie related news: the stomach illness continues, and today I had the privilege of delivering a cup of baby poop to the doctor's office. Say it with me people, "Ewwwwww."
Wednesday, November 14, 2007
Tuesday, November 13, 2007
If I were giving today a subtitle it would be: words people don't like. You see, there are words that make people cringe--make them turn away or shut down. For many, cerebral palsy is one of those words.
You see, Charlie has cerebral palsy. They told us in the hospital when we deciding whether or not to keep him on life support, that he would have it. They said he could be in a wheelchair. They also told us that he might be retarded. Wow, those are two more words that most people wouldn't want to hear.
In the hospital, when choosing between that and no baby at all, it was an easy decision--I wanted my baby. Now that I'm home, it's hard to see him poked and prodded, labelled and diagnosed. Today we got our official diagnosis: spastic quadriparesis, and truthfully, it fills me with tears. It's a diagnosis that comes with a lot of baggage--having all four limbs affected means a much greater chance of mental impairment. It's kind of funny because in the hospital mental impairment was the least of my worries. I spent the last few years working with kids of all different IQ's and I knew that with the right direction a kid with a low IQ could still work, have a family, and be a part of society. Now, I'm scared to death.
The degree to which his muscles have been affected still seems mild at this point: tight hamstrings. Right now, we'll give him lots of stretches and splints on his knees for when he sleeps at night to keep him from curling up too much. Later on, the doctor predicts an oral muscle relaxer. Cognitively, he seems OK at this point, but babies aren't expected to do much. I'm trying to take it one day at a time, but today that's a little hard. I'll try listing some positives:
He eats great! We've moved up on the weight chart.
We finally made the height chart (gosh darn short genes)
Doctor thinks his neck strength looks good.
He's reaching for his toys although he doesn't make contact most of the time.
His legs are strong and he stands pretty well if you hold his hands.
He makes his own noises, smiles, and laughs.
He's putting things in his mouth.
He's using his vision more and more.
That's all I've got.
PS: If any of you are so inclined, googling cerebral palsy is a pretty mixed bag--there's a lot of misinformation out there. Feel free to ask me a question if you have one--I'm pretty up-to-date on my research.
Monday, November 12, 2007
The baby has the stomach flu.
[Please insert a disgusting story about baby poop here.]
Today was supposed to be a well-visit, but instead it became a sick visit. Our pediatrician is also Charlie's special needs doc, and he seemed pretty pleased with how Charlie is doing. For those of you who don't know, the most common reaction to brain injury is physical--imagine someone you know who's had a stroke. Now imagine that happening to a baby. Overall, Charlie is stiff, but not too stiff. We'll know more as he gets older.
I've also begun plotting to start fixing up my new home. I'm lucky in that the old owner kept it in wonderful shape. It is still almost twenty years old, though, so I'm going to working on cosmetic stuff. First, I'm going to peel wallpaper, and then paint. I like a colorful home. After that, I don't know. All the trim is wood and I prefer white, so I suspect that will end up somewhere on the list. Ahhhh. . . the joys of homeownership.
Sunday, November 11, 2007
You know that feeling you got in high school when your boyfriend broke up with you? A rock in your stomach that is a combination of dread and nausea? Well, I've got it right now. No, I'm not getting divorced. I just found out that Charlie's neurosurgeon has left the hospital where he works. No official word yet, but the guy was kind of a maniac, and anything is possible with him. You don't want just anybody drilling holes into your baby's head, and I trusted this guy, AND he was smart, AND optimistic. There are a lot of doctors out there who aren't optimistic, and I've promised myself that I won't go back to any doctor who doesn't give me a warm fuzzy feeling. Problem is, not too many neurosurgeons in this neck of the woods. Well, crap--I'll just keep my fingers crossed that I won't need the services of a neurosurgeon any time soon.
PS: I just spell-checked this thing and apparently I can't spell nuerosurgeon or optimistic. Thanks, Blogger.
Saturday, November 10, 2007
A while back someone asked how Charlie got his name. I'm a name nerd, so I thought today would be a great time to share.
My husband had only one requirement for our child's name: he wanted it to have family significance. You'd think this would be easy, but my husband is uber-cajun, and his family tree is filled with names like Aristeed and Clothilde. I wasn't really ready to go there. Also, our last name is quite French, and I didn't want anything that would clash too much with it.
I had my own ideas. I didn't want anything too popular, and one of my top-picks has become kind of trendy lately, so it became Charlie's middle name. Honestly, Charlie's becoming quite a hit these days as well, but I didn't know it at the time. I really like old-man names like Sam and Max, so I wanted something like that. So, I picked Charles off the family tree, and gave it an old-man nickname. If he wants to be Charles when he's older, then he's got the option. I also liked that St. Charles Avenue is a famous street in New Orleans--the New Orleans connection is a bonus for me.
So, that's how we got his name. We had a backup name as well that fit all the criteria--French, classic, family significance, old-man nickname, and it also has that New Orleans bonus. Anybody want to guess what we picked?
PS: If you're a closet nerd junkie like me then you owe it to yourself to check out what I consider to be the name mecca--The Baby Name Wizard. It's all good: the Name Voyager, the blog, and the book.
Friday, November 9, 2007
I completely forgot that I'm supposed to be blogging every day. I'm not even sure what to write.
Today I was discussing a number of things with a friend of mine, and I realized that I am just too prideful. I don't even think I realized it. I don't mind apologizing if I know I've been wrong, but there's a lot of gray out there. Sometimes, you should apologize just because someone else THINKS you've done something wrong. Just to clear the air. I might be in that situation right now. I feel like I've done everything I can to be supportive of a friend of mine, but through the grapevine I'm hearing that she doesn't really think that I have been. Maybe something I said got taken the wrong way--I don't know. So here I am, I know there's a problem, and I'm avoiding it. My pride keeps me from calling or e-mailing, and just saying "I'm sorry." Mainly, because I feel I've done the best I can, and I hate apologizing for doing my best.
Sorry for being so weird and vague--I really wasn't planning on posting at all. I completely forgot, so this is what you get.
Thursday, November 8, 2007
First, let me just get it out of the way and say: I LOVE Britney Spear's new song "Piece of Me." Is there are support group for people like me or what? It's in my head, I'm groovin' to it in my car. I can't be alone.
Well, day after day of entries seems to result in a lot of crappy entries--stacked end to end. Today was a monster of day. First, Charlie's Occupational Therapist came to the house. It's the first time she's been by, and I absolutely loved the way she jumped right in, showing me different things I could do with him. I think she liked Charlie because she decided that she wants to come every week instead of every other. We'd wanted someone to come every week, but no one had been willing. That's my boy--charming the pants off the ladies!
Then, I had to drive all over creation getting a certified check for our closing tomorrow. Yes, you heard that right--we close on the house tomorrow. We're not officially moving in until the end of the month, though. I'm taking Thanksgiving week to peel wall paper, paint, and get new carpet installed. My mother-in-law is off all week, so she'll be able to help with the baby.
That's it. I'm busy. I bet everybody is--it's just that time of year.
PS: I wanted to say thanks to everyone's nice comments yesterday. I talked to my MIL law about it, and she told me the funiest story. When my husband was a little baby, another mother asked her if he was retarded--he was that laid back. My husband is an engineer, so he's definitely no dummy. I guess I just have to accept that no two babies are the same.
Wednesday, November 7, 2007
I went on my playdate today. I had a great time, but it did leave me feeling sad. The other girl's baby was a fire cracker--staring at you with her big blue eyes. Charlie has a ways to go. He improves day to day, but his lousy vision really keeps you from feeling like he's present. He'll smile at a cell phone ring, but doesn't glance your way when you call his name. He doesn't pick up toys, but I think there's little incentive when they're hard to see. It's difficult when you don't have anything you can DO. I just have to wait and see how he develops--slowly but surely is my hope.
Who knew a playdate could be so hard?
I'll do it again, though. Life may slow down, but it doesn't have to stop.
Oh, and I did grab the chair. I'll take a "before" picture, and an "after" once I've got it spruced up.
Tuesday, November 6, 2007
I'm still stewing over that long entry--trying to find the right words when I know that many of the people involved will log on and read what I have to say. Somewhere along the way, I've lost some of my ability to just say whatever is on my mind at any given moment--perhaps I am too diplomatic.
In any case, I'm still working on it. In the mean time I took a stroll down the street, and a neighbor is throwing out the coolest retro chair. I'm wondering if I should run down there and grab it for myself.
It looks kind of like this.
Monday, November 5, 2007
I'm tired, so I'll keep this short, and tomorrow I'll probably post something long because I've got a lot of crap swirling around in my head, and it won't leave me alone until I write it down.
Driving from Arkansas to Louisiana, you cut through Mississippi. Somewhere along the way is a sign that reads:
Miss. Juvenile Rehab Facility.
Am I the only person who reads that and immediately pictures a girl in a sparkly pink dress wearing and tiara and a sash?
Sunday, November 4, 2007
Here's what I like about our former church:
We handed Charlie over to a big, burly, bald, tatooed prison guard who was working the church daycare and I thought, "Whew, it's David. I'd hate to leave him with anyone strange."
It's a wacky but wonderful place.
Saturday, November 3, 2007
In the spirit of posting every day, I will, but today is more news than anything else. In about fifteen minutes, the Hub, Charlie, and I are heading out to Little Rock. I'm going to visit my old students who I abandoned suddenly over the summer; we're going to go worship with the amazing church family who prayed for Charlie; we're going to visit with some friends and eat some delicious pizza. I'll be back on Monday, but I'm going to try to bring my lap top to keep this thing going.
So much is happening these days.
Friday, November 2, 2007
There's been this preview on Lifetime for about a million years. It's for this movie, Matters of Life and Dating starring Ricki Lake. Based on the preview, I'd say it's a story of how a woman figures out life after a mastectomy. Just watching it, you get the feeling she's triumphant in the end while still looking sexy and finding Mr. Right.
I keep watching and thinking that I have to figure out how to become triumphant after all that's happened to me.
But then I got to thinking. . . and that always leads to trouble.
I don't think that I'm supposed to triumph over all of this. I don't think I'm supposed to get over it. In my humble opinion, I think that I'm supposed to learn to deal with it. For me, what has happened to Charlie is like a death in the family. Not exactly like a death, but I have definitely experienced a loss. I am mourning the death of a dream--the dream of a healthy child who snuggled next to me the day he was born, who never left my side, never felt pain, and whose potential is unquestioned.
When someone close to you dies, you don't just get over it. You learn to deal with it. Slowly, the good days outnumber the bad. Slowly, you learn how to function with this new life. You may still miss the person. You may still weep. You may wish things were different. Mourning a loss is not the same as climbing a mountain, emerging victoriously at its peak. Rather, mourning is like driving through the hills in Mississippi: there are up parts and there are down parts.
I guess what I'm saying is this--figuring it out is a process, not a destination. I can be hopeful, but that doesn't mean that I'll never cry about what happened. Being sad doesn't mean that I'm not moving forward--it's just part of the process.
Seriously, blogging is the best therapy out there.
Thursday, November 1, 2007
Oh man, this is digusting.
This is at least a three wipe job.
I sure wish I hadn't bounced him on my knee for so long.
There is NO way I'm going in there.
Today's the first day of that thing where you blog every day for thirty days. Wonder if I can do it?