MIA - Again

March 19th, 2010

It has now been over a year since I’ve written here. I’m not really upset about it, though, because I’m fully aware of the reason that I haven’t.

In late February of 2009, I found out that I was pregnant. Since then, I went through nine months of a pretty easy pregnancy, gave birth to a beautiful baby girl, and watched my darling Maggie fall completely in love with her baby sister (as we all have). And I just didn’t want to think about Williams Syndrome while all of that was going on.

I know that it is a luxury that we have that a lot of people don’t…being able to put the WS at the back of our minds and not really consider it in our day-to-day lives. Yes, we have three therapies per week and doctor appointments more often than a “normal” family, and Maggie’s unique personality and delays are more apparent now than ever, but, for the most part, I feel like our daily life is fairly…well, “normal.”

I couldn’t think about WS when I was pregnant. I couldn’t think about genetic disorders and heart conditions. Unless it came up, I didn’t want to think about. And this blog had become a “Williams Syndrome blog” to me, and was no longer a “Maggie blog.”

Does that make sense?

I love having friends in the WS community, and I love the sharing and support that only people who understand Maggie’s disorder can offer, but I didn’t like feeling guilty when she was doing great. No one made me feel that way, but I felt it just the same. I read other families’ stories about heart surgeries and erratic behavior and fighting with school districts and I just didn’t want to think about it. I didn’t want to ask for help and advice on potty training when there are other people trying to make sure their kid survives major surgery, you know? I’m sure that burying my head in the sand is not the best way to go, but that’s what I needed.

But I did feel bad about not writing for one major reason…for the information. I know how valuable it was for me to read about others’ experiences with WS when we first got the diagnosis, and I want to have something out there that might do the same for someone else.

I also have to confess that I’ve been cheating on this blog (gasp!) with another blog. I started another one that was for me. Not a pregnancy journal or WS journal or whatever…just for me, and whatever I wanted to say. I’m still keeping up with it, and do write about our family and WS and Maggie and our new baby girl, and I hope to repost some of that here very soon.

Until then, though, here are a few photos of my darling girl, a year older, a year wiser, and more than a year feistier.

Life is Beautiful - playing outside

Life is Beautiful - playing outside

Life is Beautiful - playing outside

SVAS and why Google Analytics is awesome

March 4th, 2009

So, why is Google Analytics awesome? Because it informed me that people have visited this blog after searching “how serious is Supravalvular Aortic Stenosis.” This blog is actually listed on the first page of results for that particular search. And after seeing this, I realized that the last time I posted anything about that was when we first got the diagnosis, and this made me realize its time for an update.

I know how scary it is when you get a diagnosis, and all you see out there are the tragic stories, or the cold medical jargon. I hope this helps provide an alternative view point from someone with a much more hopeful story :)

Maggie got her diagnosis this time last year after her pediatrician heard a heart murmur, which lead to an echo (SVAS found), which lead to the suspicion of Williams Syndrome, which lead to a FISH test at the genetic center to confirm WS. Since that first echo, Maggie has had an echo once every 6 months. She’s goes back for her next echo next week. She has never had to have a sedated echo, but I attribute that to the fantastic pediatric cardiology team that she sees. There are really wonderful, and super fast.

Maggie’s SVAS is very mild. Her cardiologist told us when it was first diagnosed that its just bad enough that its there at all. This means that she has a very slight narrowing. He said that it may be like this the rest of her life, it may get worse and require open heart surgery, or it may go away completely. There’s no way to know. She will always have to have it monitored regularly, even if it does appear to “go away.” But, if it stays like this, she should never have to worry about limited activity or anything like that.

For children who have severe SVAS, open heart surgery is usually necessary. Maggie’s cardiologist told us that the procedure is not really complicated, and that there is a very high success rate for it, so I assume the problem is usually mostly fixed with surgery, if not completely fixed.

At her last echo in the fall, there had been no change, and if its still barely there this time, we may be able to go in for the echos once a year now instead of twice a year. I’m hoping that when we go back, it will not have changed for the worse, or maybe have even changed for the better. We’ll be praying and keeping our fingers crossed, and I’ll update once we get the results.

Mommy’s Birthday

February 13th, 2009

So, today, Friday the 13th, is my birthday! It didn’t start out so great, with the first hour or so that Maggie was awake being spent trying to clean puke off of Maggie and Mr. Teddy, with limited success. But, I did get to spend some time with my baby before she left for a weekend with Grandma and Grandpa! Here are some cute pics of her from this morning (my photos to look at while missing her this weekend).

How’s Your News - My Review

February 9th, 2009

I have to say that the show last night was everything I hoped it would be in all areas except for one…I wished it was longer than 30 minutes. I had great expectations for this show, and it completely exceeded those expectations. To accurately describe what I was hoping for, though, will require a fairly lengthy explanation.

I think I’m a pretty open-minded person. I don’t get offended by very many things, and I am not terribly concerned with being politically correct. I like to laugh at off color remarks, and I enjoy a lot of completely tasteless jokes. I’ll even admit that I have enjoyed some jokes about the misfortunes of others, and I’m not above laughing at jokes made at my own expense.I try to not take myself too seriously, for many reasons, but mostly because I realize that the world does not owe me anything. I have the right to “pursue happiness”, which does not mean that the world is supposed to make sure I’m happy.

I think too many people in this country misunderstand this right, and have become self absorbed and whiny, and spend way too much time worrying about who they might offend. We also have the right to free speech, which people seem to have forgotten. These are things which make this country great, and you can’t start making exceptions, no matter how well intentioned you are, because then where would you draw the line? And who says when to draw the line?

I’m not cold-hearted, or unsympathetic, or mean…I’m equal opportunity. Why wouldn’t I laugh at someone for doing something funny just because they’re “different?” And why should I feel awkward about it? They’re people too, and they have just as much of a right to act like a jackass as I anyone else. I think that’s my big thing. Just because someone is missing some genes, has a weak chin, or is missing one leg, has 4 nipples or pees the bed until they’re 12, shouldn’t make them exempt from the trials and struggles, joys and rewards that everyone else goes through. If you treat a child like they’re weak and unable to defend themselves, that’s what they will be. If you challenge them, and let others challenge them, you might be surprised at how well they can handle themselves.

This is actually a fairly edited version of my thoughts on this topic, but I did want to give some explanation as to my feelings on the treatment of people with disabilities. The short version is that I was worried, because of these beliefs that I hold about the way the world works, that this show would not get off the ground due to some public outrage at the treatments of the show’s stars. With all of this being said, I was really looking forward to the premiere of How’s Your News. I was so excited because they was finally going to be something that would let the general population of this country see people like this, knowing full well that they would be taking a chance that they would “fail” and be “laughed at.” They deserve this. Why shouldn’t they be allowed to be entertaining and funny? We can’t they be silly? There is absolutely no reason that they should not be able to go out and make fun of themselves, or let other people laugh at them. They’re adults, and if they’re happy with what they’re doing, why should we worry about it? This is an amazing opportunity for these people, and we should all be happy for them. They have a job. There are millions of people in this country right now who can’t say that, so I think they’re pretty lucky.

I thought the show was done really well. It was funny, and definitely had some send-me-into-the-giggles moments. Like when Sue is talking to the guy about the legalization of marijuana, and as he rides off, he says “I’ve gotta go smoke some pot,” and the look Sue has on her face. Or when Jeremy is talking about being really excited to see Michael Bolton. I got really tickled when all I could understand of what Bobby said for like five minutes was “Boo-yahh!” And I love how Sue curses like a sailor.

The thing I loved most? That they were real. They were fun, funny, sweet, crass…that’s what people are like. Those shows about people with disabilities that make them all seem like heroes are great I guess, and it is good to recognize the struggles that come with disabilities, but I always felt like they forgot the life that happens in between the “hero” moments. Why do we have to focus on the extraordinary? I think that makes people feel more like a “story” than a real person. How’s Your news shows you the life, and the trivial, not quite so “Lifetime movie” moments in the lives of these people. And I love it :)

And here’s what I hope that this show will accomplish, if nothing else: when people see someone like this on the street, they won’t immediately ignore them or turn away in disgust. Maybe this will get enough exposure for people who are different that people won’t think as much about it when they see them in real life. They won’t be so taken aback when they’re spoken to by someone with Down Syndrome at the bus stop, or when someone with cerebral palsy comes to their yard sale. On the other hand, maybe people will see that they don’t always need someone to think for them and treat them like fragile little porcelain dolls. Maybe they’ll just treat them like they would anyone else. For better or for worse, at least it would be equal. And as parents, isn’t that the best we can hope for?

Now, the part I was debating on whether or not I should write down…the reaction the show gave me that I wasn’t counting on. I look at Maggie for hours everyday, and only about once a week do I look at her and see Williams Syndrome. I see the pictures of kids online, and in the WSA brochures, and I know she looks like them, but I don’t usually see it. I see Maggie. And even though we have therapy three times a week, and I’m always paying medical bills for her echos and check ups, and thinking about our next trip to Kentucky, I don’t think about WS that much. I’m blessed with a daughter who is doing pretty well, and my own ability to tune things out until I need them. Watching How’s Your News broke that a little. Why is it more real after seeing someone with WS on MTV? Today, I saw WS in her face. I saw it in the way she was holding her hands out in front of her when she walked, with her elbows bent and her little wrists limp, kind of like a TRex. I know she has WS…but even though I know it, certain things will happen every now and then and its almost like it hits me just like it did the day we found out about her SVAS and heard WS mentioned for the first time. Maybe I do too good of a job treating her like a typical kid, and I forget sometimes that she is missing a few pieces that ought to be there. Maybe I’m still in denial, or maybe I’m coping exactly like I should be. Its just weird when something hits so close to home.

But, regardless of that whole thing, I still thought the show was awesome, and I was glad I watched it :)

How’s Your News!

February 8th, 2009

How’s Your News premiers tonight on MTV! Please check it out, as there are three guys with Williams Syndrome on the show, and I’ve heard its probably going to be pretty funny. Its apparently not the standard show about people with disabilities, where they chronicle their struggles and shows uplifting tales of love and determination. The big question is: Is it offensive? I haven’t seen it, so I don’t exactly know what to expect, but I’m going to post a review about it later tonight or tomorrow, and go over all of my thoughts on the situation.

Here’s the link to the site:


Please watch, at least to see what it about, and to support these awesome, funny people :)

Baby puke is not as bad as I thought it would be

January 27th, 2009

Our poor little girl was up most of Sunday night, getting sick all over her pajamas, sheets, teddy, and blanket. We don’t know what caused it, but she could not keep anything down. Even after she got some sleep, she still couldn’t keep down any fluids or food. She couldn’t even keep down water or Pedialyte.

Even though we’ve never given her soda before, warm, flat Coke was the only thing that would calm her stomach. I gave it to her with a spoon, because I knew she would drink it too fast if I gave her a cup. This totally worked, and I was able to get her to keep down two saltines, some coke, and a little Pedialyte.

So, even though I still don’t want to give her soda (so she won’t become a Coca-Cola addict like her mom), I have decided that my parents were right. The best thing for a kid who is throwing up is a warm, flat, Coca-Cola. Thanks mom and dad!

She’s now doing much better. She hasn’t thrown up since before we went to the doctor yesterday afternoon, and she’s kind of getting her appetite back. I’m pretty relieved, because even though the actual puke didn’t gross me out as much as I thought it would, I felt so bad for my little girl. She would get sick, then she wanted to jump and play, then she’d get sick again. She seemed so confused. I tried not to let her play and run around, but keeping a 20 month old still is something that is easier said than done.

So, yay Maggie for beating that mean little bug :)

Maggie’s First Real Snow

January 22nd, 2009

On Tuesday, Tyler was off work, and he, Maggie, and I watched the inauguration and waited for the snow to stick. It never really did, and was gone by early afternoon, but I guess it counts as Maggie’s first snow.


January 22nd, 2009

I just had to post these…I can’t believe how much she has changed in just one year!

Christmas 2007

Christmas 2008


January 17th, 2009

Well, I finally updated the blog software, so I’m now able to post again. I am such a slacker.

I’m really going to start updating this more regularly again, now that its fixed.

I don’t think I’m going to do a catch up post, because that will seem daunting and I’ll put it off and then never start posting her again. So, I’m just going to say that the past few months have been crazy, but good, and we’re all doing well.

So, here are some cute pics from Halloween that I absolutely love. Maggie was a Fairy Princess :)

No More Living Out of a Suitcase!

November 25th, 2008

So I finally have a minute to sit down for an update. Whew! The past few months have just been insane! I’ll try to give everyone a brief overview, since so much has happened in three months.

1. THE CONDO. We finally sold the condo! We got an offer in September, and we closed on October 3. We barely got everything out by closing. I was literally pulling out of the parking lot with a car full of cleaning supplies when they got there for their final walk through.

2. THE NEW HOUSE. While waiting on our place to close, we made offers on two houses. Neither offer was accepted because they said our offers were too low (those houses are still on the market, by the way). Immediately after the closing, we went with our realtor (and Maggie, and Tyler’s parents) to go look at a house, because we still didn’t have a house picked out. We went to this cute little bungalow that we had previously written off because it didn’t have enough bedrooms or bathrooms and was kind of expensive. We knew when we walked in the door that we wanted it. We were there for 20 minutes, then went to our realtor’s office and made an offer. We went back and forth over the weekend, and we had a deal by the middle of the following week. We scheduled our closing for the first week of November.

3. HOMELESS. Some wonderful friends of ours let us stay with them until we had a new place. They had an extra bedroom and a room over their garage, so Maggie was able to have her own room and Tyler and I had ours. It was so amazing of them to let us stay there, especially since it ended up being more than a month. It was kind of tough, since they live so far outside of town. Also, as much as we love them and they love us, it was a bit rough sometimes with four adults, one baby, two dogs, and two cats all under one roof. I think they were glad to have their house back, and we were glad to have our own place after more than a month. Maggie had a great time there, because she always had people to play with. She got to go play in their yard, and play with the doggies. She didn’t even mind the train that went right by the house about 10 times a day. Anyway, I don’t know what we would have done if they had not let us stay at their house, and we are forever indebted!

4. THERAPY. While we lived with our friends, since their house was so far out, we had to have Maggie’s therapies at another friend’s house. We didn’t want Maggie to lose her spot with her thereapists, and have to go back on a waiting list. So, whenever Maggie had therapy, I had to drive like 45 minutes there and back, while lugging Maggie and all of her therapy stuff, and food, and a Pack N’ Play in case she got tired. It made me so thankful that we were able to go back to “home” visits when we got in our new house. That traveling so far three times a week was not fun for either of us. But, it worked out, and I’m so thankful to my wonderful friend for the use of her house for a month! We have the greatest friends ever!

5. MAGGIE’S PROGRESS. So Maggie has been growing and developing by leaps and bounds lately! I really think all of that time living with so many people really helped her! While we were living with our friends, Maggie started walking! She had taken a few steps before, but never really multiple steps. On Tyler’s birthday, right after he got home, she just started walking (I think she was going after some video game thing she wasn’t supposed to play with). It was amazing. She just got up and went! She’s also started talking some, and is doing great. Here is her word list: hey!, bye bye, uh-oh, bubbles (bubu), pop, no, no ma’am, baa (like a sheep). She also signs “more.” She kind of has it confused with “I want,” but it works for us. And the “no ma’am,” we weren’t intentionally teaching her manners…she just copies us, and we say that to her a lot when she is doing something she shouldn’t. She’s also kind of getting “thank you,” or something that sounds a lot like it.

6. BUYING A HOUSE. Buying this new house was a huge pain. When we bought the condo, everything went perfect and quick. So, I guess we used all of our good house buying karma back in 2006. This time, almost everything that could go wrong, did. After we had the deal, something came up every time we went to the house. We went for the termite inspection, and they found termites. We went to get an estimate on replacing the tub hardware (claw foot tub with low water pressure) and they tell us that the pipes under the house need to be replaced. We went for something else and their was a leak in the kitchen ceiling. Then, we went through this special City Lender program (neighborhood revitilization and preseveration), and we had several lenders working on our loan. Apparently, they didn’t talk much, and everything was a huge mess. I ended up spending most of my days for about 3 weeks signing things, faxing things, calling people 10 times per day, and being about as stressed as I’ve ever been. We ended up having to push closing back a week, and we were surprised the morning of closing to find that we needed a whole lot more money for closing than they had estimated. Even though it was a huge pain, we absolutely love the house, and are so glad we got it!

7. MOVING IN. The move was interesting, since almost everything we owned was in storage. Also, we own way too much stuff. At least our new house is in a great location for having a yard sale! Anyway, so the first night we had the house, Tyler and I slept here and Maggie stayed one last night with our friends. The next day, a bunch of my family came down to help. It was great having everyone helping us out so much! We got most everything in that first day! Then, that night, at about 4:30, me and my parents woke up to some really loud sound. After some investigating, we found out that some crack head (literally, look at police report) decided to play parked car pin ball on our street. My husband’s car, which is the car I got 10 years ago in high school, was the first car to get hit. The girl bounced around my dad’s car, and plowed into a BMW down the street. So, she totaled three cars in about 5 minutes. Its good to know she’ll never have a license again. Anyway, so Tyler’s car was totaled. I had this car for 10 years, driven it to Canada, Chicago, all up and down South Carolina and Georgia, and it was just parked on the street one night and met its demise. At least she died in her sleep and will now be an organ donor. I had a hard time saying goodbye. :( We were about to leave for Kentucky to go see Dr. Mervis the next week. The insurance company got us a rental car, and we drove it to Kentucky. We’re currently in the process of trying to find Tyler a new car.

8. KENTUCKY. I will have to leave for another day. Its about time to get to work…hopefully I’ll do the Kentucky update, and some more details on other things, tomorrow.

Thanks to everyone who has been checking in on us and waiting for an update! I hope everyone is doing well!