Thursday, October 7, 2010

Fried Chicken and Waffles

This morning, Malkolm woke me up to ask me where the baking powder was. It was 6:00 a.m. and I just stared at him, trying to wrap my sleepy head around the idea of him asking for baking powder -- I thought for a moment, maybe I was dreaming. Looked at the clock, looked back at him. Was he really there? Malkolm nudged me again. "Momma, Momma -- I'm making waffles as a surprise for Malia, I need the baking powder, can you please tell me if we have any and where it is?"

I shook my sleep off a bit, and told him where it was and thought, how sweet, he's making waffles for his sister as I fell back off into slumber (I still had another 30 minutes to sleep, wasn't ready to give that up). Malia had missed several days of school because she's been battling strep and some kind of respiratory thing for the past week and today was her first day back. Malkolm wanted to make her first day back to school special and decided to make the waffles.

He had gotten up early to work on a story for class, so when he finished he went to, looked up a waffle recipe and printed it out. He followed it to the letter, and when I woke up, breakfast was almost ready ... with one small snafu.

I was looking at the batter, and everything appeared to be a-ok. I saw some flecks of something floating in the batter and about the same time, I noticed a savory smell coming from the bowl. At that point, I was wondering what the recipe called for that would create this smell, which, as the moments lengthened into minutes, really began to smell not quite right. I asked him what he put in, and he didn't mention anything out of the ordinary -- the recipe looked like a normal waffle recipe.

It was then I noticed the plastic bag on the counter. The plastic bag half-full of flour that was spiced and ready for "shake and bake" chicken. The bag that had about two more cups of spiced flour in it when I went to bed the night before. Ahhhh, my baby. He had used the flour with the garlic, pepper, salt, thyme and a myriad of other spices that were just right for chicken coating and gravy, but not so much for morning waffles.

When he realized what he had done, tears filled his eyes, and he started to cry, I was explaining how proud I was of him for doing this -- for not only trying to make these on his own but especially for taking the initiative to treat Malia so preciously. My condolences didn't really seem to hit home right away, but we watched the waffle on the waffle iron cook, almost as if we were mourning a goldfish passed. The smelly waffle came out perfectly shaped and formed ... albeit completely inedible.

I quickly popped a couple of Eggo waffles in the toaster for the kids and they ate them breakfast before heading off to school. In spite of the savory waffle incident, my heart was dancing. I knew he was hurt that his waffles weren't quite what he expected, but I loved him so much for trying!

This 10-year-old, never having made waffles before, dusting off the waffle maker and ignoring the Bisquick in the cabinet, rolling up his sleeves and make these waffles for his sister before the sun was up.

As a mother, you know, sometimes I wonder if I'm getting this mother thing right. I make a decision about some disciplinary action, or I say something out of anger that I have to apologize for -- or I don't set a good example with how I handle things. I feel like I am a horrible example in so many ways, I am usually questioning whether or not I've done the right thing -- was I too harsh? Was I too lenient? Am I being fair? Did I overreact? Did they just see me sneak that extra piece of cake?

And, for sure, we have the usual sibling fights ... the competition to see who can get to their toothbrush first ... the shoulder bumping as the try to position themselves to be the first one out the door ... the snarky button-pushing comments when they've had a bad day and aren't getting their way ... all of this happens on a regular basis between my eldest two, but when I see them doing something like this -- so unselfish and heartfelt -- I get a glimpse of how they will be when they are older; friends. Calling each other just to talk, or arranging visits. Leaning on each other for support when something difficult or emotional happens. Being there for one another as they grow up and find their own paths outside of our home; as they move into grown-up land and have their own families.

Sometimes when they are at each other's throats, I get so angry and I just want to ground them for life and take away every privilege known to man, but when stuff like this happens, I can see that we are making progress. We are moving in the right direction ... and that's a pretty good feeling.

Homemade waffles or not, it was a swell morning.



Wednesday, September 15, 2010

Turning 10 and Other Things

Well, it's five days away from his 10th birthday. I look back on the past year and marvel how time can go by so fast. Remember when you were little, summer seemed like it lasted forever? At this point, I'm wondering if somehow the summer months were shortened.

Malkolm came home from school last week and told me about the fire drill they had. He said "You know Mom, I could really tell a difference when we were going out for the fire drill. It wasn't hard to keep up with everyone like it used to be!" AMAZING!!

Taking out a bit of muscle (about the size of a deck of cards) and installing that defibrillator has made all the difference in the world for his quality of life. He's completely off his heart meds, his energy levels are through the roof compared to what they used to be, and he's back to his happy self, seemingly with more confidence than ever.

I bought some scar patches to put on his scars to soften and lighten them, and he wasn't too thrilled about the idea. I asked him why and he said he wanted to remember what happened and that these scars reminded him and he was proud of getting through all that. Of course, then he added "and don't girls like scars?" Sure thing son. Sure thing.

I have to say ... God has been so so so good to our family. Bringing my son and our family through this experience, allowing us to see the blessings all the way through. Looking back, I can really see that all the energy and love and support we received through this experience made everything so much easier for us. It's like God knew exactly what we needed and put all the puzzle pieces in place for us to have that.

As we approach this date, I am thinking a lot about what we've been through. I can't believe Malkolm had open heart surgery less than six months ago, and here he is, running, jumping on the trampoline, just finally getting to be the kid that was always there wanting to participate but never really getting to. I look at my other two young ones and I can FEEL God's love for me flowing through them, and even if I lost all of this tomorrow, I've SEEN that love and I understand what it means to be His child and I know I have been blessed beyond anything that I could ever hope for ever deserve.

I recently had a miscarriage and the peace that I have about it, the kind of peace that can only come from God, didn't really make sense to my friends. They were telling me -- "Jennifer, really it's okay to be upset you shouldn't try to be strong all the time, it's okay to be sad." But I really am totally okay. And you know, it's not what I would have chosen, but I know things are as they should be. Everything has it's place.

I think going through Malkolm's surgery, seeing his complete faith about how God was in control ... it's affected me on so many levels, and has renewed my own faith, a faith that continues to grow stemming from the faith shown by my 9-year-old son. Whether or not I agree with anything that happens is really not the point. It's the understanding and awareness that God lives in the forever now. He sees everything from this moment to 500 years from now in an instant. How can we possibly even begin to fathom the scope of that?

On that note, I just want to PRAISE the Lord for the blessings that we have, for the life he's given us, for the trials he's brought us through that make us stronger and for the time, however brief or long, we have with our loved ones. God is good. God is in control. Thank you Lord for taking this weight of worry off my shoulders and I pray that you do the same for anyone who might be reading this.



Friday, April 30, 2010

Scratch, Scratch, Scratch!

It's April 30th and my scars are healing up quite nicely. I went to school this Monday, and it's been going great. I'm not allowed to carry my backpack for awhile (yippee!), not allowed to go to recess for awhile, and not allowed to go to P.E. (at least I get to play on the computer!).


There's a cool program on my computer that I downloaded called Scratch. It is a program where you can create games, art, music videos, videos, and more. You make them on the program and then you put them on the website. Recently, I've made a few games, some animation, and even a contest! If you want to see something I've made, click here. There's a lot of cool things on scratch, but also a lot of inappropriate things.


A few books I've been reading lately are in the Percy Jackson Series. It's about a boy who's the son of Poseidon (the water god in Greek mythology). He goes through many things that are very adventurous, and the trail of books leading up to the last book is so suspenseful. In the first book, he discovers he is a son of Poseidon and is accused of stealing Zeus's lightning bolt.

In the second book, he has to go into the Sea of Monsters (the Bermuda Triangle) to retrieve some magic fleece -- called the Golden Fleece -- to heal the tree that protects the camp that the demigods (son/daughter of a god/goddess) go to to be safe.

In the third book, they go to save Artemis (goddess of hunt) from Atlas, who found someone to replace him, and then Artemis took pity on that girl.

In the fourth book, they go in to the Labyrinth to find Daedalus, the maker of the Labyrinth, to get Adriane's string, which helps you through the Labyrinth.

I just want to let you know, but, I was just exploring the blog features, and i put some things on my blog page. I put a fish thing at the top, but my mom deleted it. There is a pin ball game on the side, and a pictures of puppies at the bottom. She told me the fish was an ad (oops).

I will give more updates later. Thank you for reading my blog!


Tuesday, April 27, 2010

Getting Back to Normal Life

Well, we are still signing stories. We mailed all of them out, but some were unsealed, some were empty envelopes, some only had the note from Malkolm. *whew*

But it seems the bulk of them have been received without incident. We have extra stamps, and Malkolm is still signing stories to be ready for any we might need to send again.

Big thanks to Melissa, Shawn and family for your help in putting all those labels on and helping us get everything stamped. It was nice to be able to just stuff the envelopes as Malkolm finished signing ...

Malkolm went to a Boy Scouts meeting tonight for the first time since his surgery -- and he will be graduating this weekend. They boys all clapped and cheered when he came in. How cool was that?!! Well, he's missing the graduation which is at a campsite, but he will officially be a Webelo (not even sure how to spell it yet!) after this weekend! He's pretty excited about getting to wear the tan shirt.

Things are going to move fast -- we have a couple more follow-ups before the end of school and then it will be summer! I LOVE SUMMER! Just having the kids around all the time is one of the coolest things I can think of -- I love to hang out with them. They get along well most days, although we do have our moments where everything is a competition or argument. Who can eat their pudding faster? Who can take a shower the fastest? Who can get to the mailbox first? LOL! ahhhh, man, I love being a mom. Love it.

We're taking Malkolm to school every day now, no bus for a while. He likes being a car rider ok, but he says he misses hanging out with his friends on the bus.

Things are slowly getting back to normal. And I think normal is a good thing.



Saturday, April 24, 2010

If Only there Were Such a Brain Pill™

We licked the last envelope, pressed on the last stamp, wrote the last address ... finally got all the rest of the original orders for Malkolm's story out in the mail today. There are still about 20 who haven't paid, and about 50 transactions canceled because people decided they didn't want it for whatever reason. I expect payments to be trickling in, or notes from people letting me know we forgot to seal the envelope (!! thought at first there was a faulty box of envelopes, but after hearing the descriptions, I think we just forget to seal some before we sent them out -- only about 10 so far, hopefully that will be the bulk of it)

It's been an eventful week.

My 4-year-old smashed her hand in the door at the post office. Her finger actually. She panicked and pulled it out instead of pushing the door open, so in addition to the heavy bruising, there is also quite a large bit of skin damage, but she is doing better.

We finally figured out that if Malkolm only signed instead of signing and writing the numbers on, that things moved much quicker. So Malkolm signed, and I wrote the numbers and we finished! I never realized how annoying paper cuts on my tongue and lips could feel. If I never lick another envelope it will be too soon. I heard there were pre-sticky envelopes ... yesterday. Ok, well. That's cool. Maybe next time.

Malkolm finished his first week of school. Only half-days, but school nonetheless! Kind of exciting. He finished his project for the economics unit. I'm going to post it below.

We kept the house clean the entire week. Not all day, but by the time we went to bed, it was almost CBS worthy. Oh, and I realized that CBS posted Malkolm's story under Politics. Things make a lot more sense now.

I had a long talk with Malkolm's Discovery teacher and she told me all about her interview with CBS. She spoke of Malkolm's character and how he is, his work ethic and such -- and they only used ONE line of her interview. The one that talked about Malkolm being a natural problem solver. And now I know why they only used that line and why they used the clips they used and included the half-information they did.

I guess I shouldn't be surprised, and maybe I am a little naive. Ok, well, I do have that tendency now and then, but I just didn't expect it to be lumped in with the health care politics. Here I am posting on a Politics story about why it shouldn't be a politics story. LOL! I've posted several times, basically reiterating what I said in the last post, but probably a shorter version. I think it's fair to say, in general, people seem to be mostly accepting when I post about what I think Malkolm's story is about (not Luna, but the whole selling the story on Ebay thing). It doesn't really bother me that much, but I felt it worth mentioning.

I started working on some of my creative firm work for the first time in more than a month. I am wondering at this point if I am going to be able to keep up with the volume of work. I know for sure we're not taking on any more clients, just taking care of the ones we've got. One thing that has come about through all this is my realization that I do not want to spend the bulk of my day in front of a computer, I want to spend as much time with the kids as possible.

Being here is not enough. I've been SO spoiled for the last few weeks, and now that I have a taste of it, I don't want to stop eating.

On that note, here is the writing portion of the economics project Malkolm did for school this week. He had fun working with InDesign to create the package and the ad that went with it. I was impressed with how much he retained from our discussions about entrepreneurship.

Without further a due:


My product is called Brain Pill™. The Brain Pill™ is a pill that, when taken properly, you will instantly know how to do a certain skill, like golfing, how to fly a plane, karate, etc. For example, your son expects you to go skateboarding with him, and he’s really looking forward to it. You are going to be busy all the time until the skateboarding, and you don’t know how to skateboard. All you would need to do is take the pill, and you would then know how to skateboard! This product would give the opportunity to people who have trouble finding time to learn. The Brain Pill™ would surely help a lot of people.


The resources I am going to need are capital, labor, and I will provide entrepreneurship, land and management. Just so you know how much capital I am going to need, the things used to make the pill is: Chopped plant (gingko viable), a powdered rock (unobtanium), and a secret formula that has two chemicals in it (cranium volatile and cerebrum concord). The cost of each bottle of pills will be $50 to $200 per bottle. The simpler the skill is, the less expensive it is. So the golfing pills will be worth $50 per bottle. It will take about $10 to make a bottle of pills (including creating the pill, packaging it and advertising it), so our profit margin (or net profit) will be $40 per bottle.


We are going to sell it at stores like Walgreens, Wal-Mart, etc. For the golf Brain Pill™ specifically, we will advertise it in two papers called USA Today and the New York Times. For different types of Brain Pills™, we will advertise in different areas. For example, a cooking Brain Pill™ would be advertised in a cooking magazine or a commercial on a cooking channel. The golf Brain Pill™ will be put in USA Today and the New York Times because a business person uses golfing as a way to calm down the mood as they explain things to clients, and business people read newspapers like USA Today and the New York Times.


We will soon expand to baby food so babies can easily learn their shapes, colors, letters, and phonics. As soon as the baby learns letters and phonics, she/he can soon learn reading! The pills are for ages 25 and older, while the baby food would be for babies and toddlers. For children and young adults in elementary school to high school/early college, we can possibly create drinks (chocolate milk, fruit punch, etc.) that can help them learn skills like karate or skate boarding.

Ahhh, if only there were such a thing.



Tuesday, April 20, 2010

Cool at School

Malkolm had his second 1/2 day of school today, and is feeling pretty good -- not drained like I thought he might be. He will be taking the CRCT every day this week (for those of you who don't know, the CRCT is the Georgia standardized testing that all public school kids have to take). Malkolm has done pretty well on this test in the past. His first year taking it he didn't miss a question. Last year, I think he missed a question or two. (I think back to those tests we took growing up and I don't recall ever getting a score anything close to perfect -- not in any grade).

I'm not sure that he's 100% focused on this test stuff, after missing school for a while, but he's generally so happy most of the time, it's hard to tell. I ask him how his day was and I get a chipper, "Great!" I ask him how he thinks the test went and I get a chipper, "Great!" I ask him if he enjoyed his day, and I get a chipper, "Oh yes!" Ahhh, details son, Mom needs details!

He did say that there were a couple of questions on the test part today that he wasn't so sure of the answers. Tomorrow is math, probably his strongest subject.

I just gotta say, it's so nice to be sitting here thinking about how he's going to do on the test and being wrapped up in his school work (he's working on an economics project, he had to create a product, do a mini business plan, create an advertisement and write a short persuasive essay about why someone should buy his product). So different from three weeks ago ... four weeks ago .... wondering about the surgery and his recovery.

I'm totally digging it.

One thing is for sure, his personality is back to what it was before the surgery. Cracking corny jokes all the time and just being ... a cool kid. (Oh man, I love him.)

He is working on the economic project on the laptop right now, using Adobe InDesign to work on his product package design -- and he chatted me and then pasted what he saw into the chat window. His name for me on his end is: justplainoldbestmommainthewholewideworld!

Heh heh. A cool kid indeed.



Sunday, April 18, 2010

Great Quote

Just saw a great quote on a friend's blog.

The shortest distance between a problem and a solution is the distance between your knees and the floor. The one who kneels to the Lord can stand up to anything.

Isn't that the truth! And so many times we try to take things into our own hands. When the waters are rough, it's easy to reach up to the Lord and ask him to help us out of the water. When the water is calm, how often do we forget and stop reaching up, thinking we got it and don't really need help?

Just something to think about.



Politics as Usual?!

As much as I didn't want to talk about this here, I guess there has been enough said that I think maybe I should.

We have a lot of people who are really focusing on the health care issue and trying to put Malkolm's story puzzle piece into a puzzle where it doesn't belong. Trying to say that if our health care system was not broken, this young boy wouldn't have to worry about paying for his own surgery.

Let me make this very clear. This young boy was not stressed out about paying for his own surgery. He was not "worried" in the sense of the definition of the word. He was aware that it would cost a lot, and he just had the idea, something that was within his realm of understanding, to help in some way. For him, this is no different than him wanting to have a lemonade stand at our next garage sale to raise money for Ronald McDonald House (where we stayed for a week while our youngest was in ICU right after she was born).

I know this is hard for some to understand, because the purity of my son's idea is something that isn't tied to any emotional or lifetime baggage. He is a young, sweet, smart (and I gotta say, pretty darn cute) boy who saw an opportunity to help, and as a proud momma, I jumped at the opportunity to acknowledge it and give him the chance to do so.

Of course we are happy to be able to pay these bills up front, to be able to stay in a hotel during the surgery, for me to be able to miss my creative firm work for over a month, and pare down my ebay listings for a while. To have the money to make the follow-up trips to Atlanta. BUT, these are not things that would not have happened if Malkolm's story had never been in the equation. For me, especially, just being able to focus on Malkolm and not worry about money coming in from my work to pay bills -- well, that was just COOL.

Even if the health care was FREE, I still would have had to work during his surgery to continue to bring in money to pay bills that we need to pay, and that would have been really hard. Not impossible, but definitely hard, and something I'm so glad that I didn't have to worry about. To not to have to worry about missing work so I could tend to Malkolm? Well, that is a gift that I can't even begin to thank people for. And then, on top of that? To have the surgery paid for and the follow-up trips to Atlanta? BONUS. HUGE blessing.

Yes, we are on a tight budget, that is one of the things we knew would be the case going down to a one and a half income household. Yes, I own two businesses and work too many hours (something I would do no matter what job I have), but this is our choice. Our choice for me to have the opportunity to be available at home to raise our children. I missed the better part of the first three years of Malkolm's life. I will not make the same mistake again.

There are certain sacrifices you make as a family in order to make this happen, but again, it is our choice, and no "fault" of the government or any failing health care system.

I have to be honest, I am not a fan of the new health care bill. Especially considering my son's situation -- I don't want to have to wait for approvals to get procedures he might need at the drop of a hat. Does anyone think that if we were under the new health bill that we would have gone 23 days from the time the docs said he needed to have surgery to the actual surgery? I doubt it. Twenty-three days to get through government-run red tape and paperwork? I'm sorry, but from my experience with government-run agencies, the turn around time just isn't that great. As many families dealing with a condition like this, we know that time is of the essence.

Please note: Again, we were prepared and willing to pay for this on our own. We have good insurance. Cash flow is an issue with a one-income home, but we make it work. We work hard and we don't expect handouts from anyone. In fact, I can almost guarantee you that if we had known how everyone would have responded to this, we may not have let him sell his story on ebay ... well, I know my husband would have said no, beyond a shadow of a doubt and that would have been the end of it. We would have made it work.

PLEASE don't put my son's puzzle piece in a puzzle where it doesn't belong. Please don't tarnish this young boy's intent by bringing politics into the mix.

Ok, that said -- I remember when I was in the newspaper a lot growing up, as I was playing high school basketball in San Antonio, and then later on playing college volleyball and basketball in New Mexico -- anytime things are in the news, there are inaccuracies.

I remember when I missed a game, injured, and somehow I was reported to still be the high scorer (when it was actually my sister). I remember when I played with a broken pinky on my right hand and the newspaper reported it was a broken thumb on the opposite hand. Things like this happened all the time. It's just something you get used to when you're in the news a lot.

I have found that with medical conditions, it is even harder for facts to translate. I cannot even begin to address the inaccuracies in all the stories and news coverage -- but the important thing here is that Malkolm Poyer had an idea to try to help when he would have had every right to just be focused on everything he was going through. When facing a life-threatening surgery, a life-threatening condition, he was totally excited to not only have the surgery with unabashed faith, but also wanted to help in any way he could.

The reporters we spoke with were 100% across the board super kind and I don't believe they in any way meant to misrepresent things, but in some ways they did. Not just about the medical issues either. I guess I should not expect people to not focus on the money in an economy like this. The money is just a piece of a bigger picture, and shouldn't have been the focus of the picture. The kid who wants to keep up with his friends, who is cute and smart and totally unaware of the scope of this -- he is the main thing in the picture. (How anyone can get past those long eyelashes is a wonder to me, but anywhoo.)

Sure, it's a groovy thing to be able to have this extra income in a hard time, don't get me wrong, but I think it's important to view the whole picture and not take out pieces to suit an argument or two.

In other news, Malkolm is doing well, and signing away. We hope to get the remainder of the stories out to everyone who bought one early next week. He's almost up to 1,000 now!

On that note, I've got some chicken in the oven and a few hungry kiddos. Better get to it.



Friday, April 16, 2010

Has it Really Been Three Days?

Has it really been three days since I posted? Time flies when you're having fun ... or is it when you're trying to clean your house because you're going to have a news crew in the living room? (I get confused sometimes.) We decided that we would do one last interview and take the opportunity to thank everyone and to let everyone know that Malkolm's listing has ended. We will be on the CBS Saturday morning news program (is it the Early Show Saturday Edition? I'm actually not sure, things are a bit of a blur), I believe it is on at 7:30 a.m. ... but I'm not 100% sure about that.

After all the Fox News / Yahoo News publicity, our stories sold so fast! People are continuing to e-mail, asking if they can get a copy of the story or if we are going to re-open the listing. Many of my friends and people who know Malkolm and our family personally are really disappointed to see the listing end. Especially with all the positive publicity surrounding this whole thing.

Malkolm's dad and I felt it would be best to honor the original intent of Malkolm's idea, to help pay for his surgery and medical expenses related to the surgery only -- and I figure with all that we have received, his follow-up visits possibly through the summer are totally covered.

I hate to admit, but closing the listing was not the easiest thing in the world for me to do. Selfishly, I was thinking that Malkolm's medical expenses for his heart could be completely paid for maybe even into the next year or maybe even longer -- if we let it ride. What mother wouldn't think about that for their child? Not to mention the amazing feeling to see so many people touched by my son. BUT ... I know anything past what the original intent of Malkolm's idea would just water it down and turn it into something else, spoiling the purity of it.

Not to mention Malkolm is still working his way through a stack of stories, still signing!! He's got a myriad of afflictions: Writer's Sleepy, Writer's Rug Imprint, Writer's Cramp and Writer's Wrist Tiredness ... all of which can only be cured when the signing stops.

Many people who know us personally or know Malkolm personally were pretty disappointed that we let the listing end, because the positive energy was so amazing and this was something that really was inspiring and blessing people (not just our family); but they mostly understand when we explain why.

Another idea a few people had is to use the current publicity and start donating the extra money to a charity that helps children with medical issues who don't have insurance or can't afford to pay for their medical expenses. Although I think this is an excellent idea, I do think it needs to be a separate thing at another time -- this publicity thing is really time consuming and it's definitely taking it's toll on Malkolm and our family. I can't even imagine doing all this with Malkolm in school, we definitely need to have all of this off the table before he goes back to school full-time.

I got an e-mail from someone who said something about offering a service where they will bind books as they are ordered (I haven't had a chance to reply yet, I am still working my way through replies to everyone who has purchased Malkolm's stories). I didn't know such a thing existed. Malkolm is interested in making this into a "real book" someday, and that is also a viable option, but just not through this Ebay listing.

I think a neat idea would be if Malkolm does illustrate his book or have it illustrated and decides to do all that extra stuff to make it into a children's book, to donate a portion of the proceeds from his book to the Children's Hospital or the Ronald McDonald House. Both organizations are close to our hearts for different reasons.

I'm sitting here writing and am amazed that I'm even writing about this. It feels so surreal. I think back to about one month ago, when we found out when his surgery would be... it's years ago.

March 1 - doctors say Malkolm needs surgery
March 12 - we find out surgery date is March 24, first day of ebay listing
March 23 - Malkolm's Pre-op appointment in Atlanta
March 24 - Malkolm's open-heart surgery
March 28 - we're home
March 31 - first post-surgery follow-up
April 12 - first post-surgery defibrillator follow-up
April 14 - ebay listing ends

eh?!! What just happened?

The important thing through all of this is that Malkolm is doing so well, yesterday he needed Motrin for the first time in four days, so his pain is definitely under control -- he will even be going back to school in the mornings next week for the CRCT (Georgia standardized testing), in which he generally does pretty well. He goes back to school full-time on April 27.

Ok, well, few more things need to be finished up before news land gets here, and I do believe I smell a poopy diaper.

-Jennifer P.


Tuesday, April 13, 2010

The Listing Has Ended

Wow, the response to the Fox and Friends interview was immediate and amazing!! We sold over 250 stories on Sunday after it aired. I stayed up late and replied to every email and I felt pretty good about getting through them all before our appointment on Monday.

When we got home Monday night from Atlanta, I expected to find just a few unread emails, maybe from people who were replying to the email I sent to them. I was shocked to find hundreds more stories had been sold. All I could think was maybe a person who bought a story had a lot of facebook friends or something -- LOL! As it turns out, it was on the front page of Yahoo News. Although I missed it, I heard it was the big pic when you first open up the news and all the stories were gone within a few hours.

I must say the overwhelmingly positive response to this has really blown me away. There is so much negative happening in the world and yet, the way people have embraced Malkolm brings a feeling I cannot fully express with words -- which is a big deal for me, because apparently I have a lot of words that I need to get out on a daily basis.

The genuine nature of the notes of encouragement for Malkolm, the personal stories of grief and joy and the wishes of peace and prayers for our family. Just ... wow. It's been unreal. To have so many people see something special in Malkolm and want to help him is just amazing.

I have to admit I am generally a pretty positive person -- in fact I've been suffering from "Overly positive view of Life Syndrome" since a young age. I remember my friend in 8th grade ... we were arguing about something and she got so frustrated and said "Life is not a bowl of cherries, Jennifer!" Seems like something I would hear a lot over the years, maybe not in those words, but with the same general idea being presented.

One of the comments on this blog earlier, can't remember which post, but it talked about Malkolm seeing the glass as half-full. When he read the comment he asked what that meant. So I explained the concept, and he was delighted that there was a metaphor available to explain optimism and pessimism without hurting people's feelings. And that is SO MALKOLM.

This little boy who at 3-years-old took a slinky from two fighting kids claiming to have a solution to their slinky issue. "Wait, wait! I have an idea!" He took the slinky and gave one side to one of the kids, and the other side to the other kid and said, "There, now you can both play!" It was a perfectly simple solution to him, though, of course, was not really a good solution at all considering how you play with a slinky -- but I loved him for trying... For stepping in between these two older kids who didn't even know what to say when this younger one stepped in (one of them just ended up walking away), but who were apparently going to fight indefinitely about whose turn it was to play with that slinky.

Unfortunately, with any story that garners attention like my son's idea has, there come naysayers and people who just generally tend to see the glass as half-empty. And I can appreciate that, even if I do not agree. (Life would be boring if we all had the same ideas and thoughts. There would be no Malkolm story if he was a clone.)

There are also those who would like to use his story, our story, to further their political arguments or causes (or even use my son's auction template to create a new bogus ebay listing that has nothing to do with us), but those people are missing the heart of the issue.

The heart of this issue is that there this special 9-year-old with amazing faith who wanted to help his family using his God-given talents. At the moment he mentioned it, he didn't even really realize the depth of what he was suggesting (I don't know that any of us did), and I believe he still doesn't totally get it. But that just makes him more amazing to me.

As his mother, I could not be more proud of him than at this moment. The young man he is trying to be, the man he will become. I can see glimpses of him taking long walks with his son and talking about life. I can see a flash of him in a tux at his wedding, as he marries the woman of his dreams. I can see a young man who is even now somehow heads and shoulders above many adults in his ability to see the world in a way where he genuinely wants to treat others preciously even at the expense of his own satisfaction or gain. At the same time, I see him as the 3-year-old with the curly locks and the floppy hat standing in front of an elephant at a zoo. ... kind of a strange dichotomy of feelings to sort through.

I see this young man who has no business understanding some of the things he understands, and doesn't quite have the emotional context to fully grasp them. I hope I can be there on the day when the emotional maturity catches up to his understanding and everything clicks into place. What an amazing day that will be. For now, he is just a really neat 9-year-old learning how to be 9. And when he just starts to get it, he will turn 10, and so on and so on.

Just over two weeks ago, Malkolm had surgery. Already it's starting to feel longer and farther away. This is a good thing I think. When I look at my son, my daughters, my husband ... I know things are just as they should be, naysayers or not.

I am going to go snag some cuddle time.



Monday, April 12, 2010

My Defibrillator Follow-Up Appointment

Today we went to another follow-up. We will go to another appointment in Atlanta in a month, and I think we will be doing this for six months.

We parked in the parking garage and went to the elevators. Note: Every time we came to an elevator, Malia shouted "I want to push the inside button!" (What a cute little girl!)

We rode up to the first floor and I got my bracelet (the one you have to wear when you are the patient in a hospital). I walked with my mother and sisters to another pair of elevators and went to the second floor.

We walked to a waiting room and my sister and I quarreled about the toys. There was a toy that had little circles that roll down a zig-zag track and Malia and I were racing the circles. It was basically like watching a horse race. Malia didn't understand how it was played and pulled her circle down the track. I was getting super duper frustrated so we had to sit on some of the chairs in the room for the rest of the time.

A doctor came in and brought me into a small room where I got an EKG (an EKG is when the doctor puts a few special stickers on your chest and hooks wires to them; this monitors your heart beat).

A couple of doctors came into the room and examined my scars. They said it looked like it had been a few weeks since I had gotten out of the hospital because I am healing so well. There was a controller for the defibrillator (it was wireless) that they used to speed up my heart for a while. It felt just like I had felt all the time before the surgery, except milder.

The doctors dismissed us, and we were soon out of the hospital and on our way home. My mom was feeling good about the appointment.

On the way home, we had a lot of fun laughing about a funny video a kid made; his mom sent us the link. Click on this to see the video. Warning: Malia thought it was gross in some parts, but I thought it was a riot!


Sunday, April 11, 2010

Fox and Friends

Driving around this morning, we were practically lost. We soon found our way after asking directions a couple of times. We followed a man through the building, and admired several architectural designs on the way. We walked into the news studio and sat down on two seats. We were in front of a camera that was remote-controlled by a studio in New York. The right wall were shelves from the floor to the ceiling full with video tapes. There was a city background behind us. The left wall had two computer screens and the keyboard was filled with weird options (it was for editing video).

The nice man who had led us through the building set us up with earphones and microphones. We could hear the news people talking in our earphones. After Mr. David asked us a bunch of questions, we were out the door. I was nervous before we started, but after we started talking I wasn't nervous anymore.

It was a cool experience!


Saturday, April 10, 2010

In Atlanta Again

Well, here we are in Atlanta again -- this time, I'm feeling much better about our visit. We're interviewing with Fox and Friends tomorrow morning and then Malkolm has his follow-up appointment at the Children's Hospital on Monday.

Gotta admit this is a really nice feeling. I wish Sia could have come with us (so did he), but it seems a coach's work is never done.

I must share something that happened ...

Before his surgery, Malkolm would get winded with a simple walk from the parking lot to the store, or from the parking lot to any restaurant or hotel, or pretty much any place we had to walk more than a few feet. I remember thinking he was just being lazy -- ugh, I really hate the feeling of remembering getting frustrated with him because he was always dragging his feet, always two steps behind, whining about how he couldn't keep up. I just never connected that with his hypertrophic cardiomyopathy. (Wow, I'm such a great mom.)

To know now that it was his heart that was giving him this moving-through-molasses thing ... man I feel so horrible about how frustrated I would get. Always telling him, "Come on son, you have young legs" ... thinking about how many times I would literally drag him forward ... ok, well, I really don't want to think about that anymore.

Well. Tonight when we were walking into the hotel, it was not a short walk -- it was probably about a full city block -- he was ahead of the stroller -- totally nonchalant, walking with Malia, not out of breath, not draggy, not the moving-through-molasses kid I used to know. I'm pushing the stroller, and I have a mixture of guilt, from all those times before and how I handled it, mixed with excitement ... mixed with a wonder if this is just some fluke or is this how it will be for him now -- mixed with total pride of knowing what he has gone through for these nine years; what he has pushed through in order to keep up as well as he has. Watching him walk with his sister without nudging, without encouragement, just strolling. All of this mixed with an immense pride. I was so proud of him for what he has endured without any real complaining, without feeling sorry for himself. Finding his path.

Thinking about the times when he told me that he had to stop running in P.E., because he couldn't breathe, and he was crying. Remembering the time when the little girl in the library asked me if I was Malkolm's mom, and then told me how he was really crying hard in P.E. when everyone was running ... a little girl I never met before, who just knew Malkolm and thought he looked like me. After she told me that, she proceeded to tell me, "But wow, he's soooo smart." Yeah, that's my boy.

When he went to his 3-day field trip to Jekyll Island this year, he did mention to me that some teachers on the trip told him he wasn't going to make it in Atlanta. I asked him what that meant -- and he explained that because he was always last and walked so slowly, the teachers were saying there was much more walking on the Atlanta trip (the fourth grade field trip he may go on next year) than on this Jekyll Island trip ... I'm sure they thought the same thing I had in the past-- that he was just being lazy or something ... but now. NOW, he can breathe and walk and keep up and WOW. I just can't tell you what a difference it was tonight. Even just that short little walk to the hotel was a completely different experience ... for both of us.

I am hoping and praying that this is just the first of many "speedy walks" for him -- that it won't be so hard for him to keep up and that the surgery is doing what it's supposed to -- considerably improve his quality of life. Holy cow. I'm just floored. If you could have seen him ... just strolling. STROLLING!!!

Ok, well, now I'm crying. Better go, pizza is going to be here soon!!



Thursday, April 8, 2010

Ants -- Not the Ones Married to Your Uncles

I received a book for Christmas that had a bunch of gifts in it -- I got to pick one. It was not easy to decide, but I ended up choosing to order an ant farm and before you know it, I was complaining how long the ants took to get here. It took about four or five months for them to get here. (?!)

I poured them in after putting them in the refrigerator (following the directions), and was sad to find a bunch of them had died. Now only four are alive, and we are thinking of getting a new ant farm and some new ants. I fed them bread, but they put the bread where they put their dead. I found out later that they suck out all the liquid from food and then spit the dry stuff out. I will feed them fruit on the next feeding day on the schedule.

Then I noticed that one of the four ants was staying down with the dead, while the others looked for food and exits from the ant farm. It is pretty neat to watch them, and I don't think they will dig tunnels for a while. (I think they have post-traumatic depression.)

Anyway, just to tell you about ants, they have two stomachs. One is called the crop, which is the stomach they can store food in and then share after regurgitating. The other is their social stomach, which is the one that digests food. The ant's heart is also where the stomachs are. the stomachs are located in the abdomen. The abdomen is the back of the ant (if you know what I mean).

The thorax is located between the head and abdomen. The ant's eyes are sort of like holding two toilet-paper rolls (empty) to your eyes, like binoculars. This type of eyes are called "fixed eyes."

Their antennae are how they touch, taste, and smell. They use them to smell food, friends and enemies. They use them to clean each other and themselves. They use them to taste food before chewing.

The little things that you see poking towards the ground out of their head are mandibles. They are sort of like tongs. The maxillae are things you can't see, and they are like teeth. Did you know that you have a mandible and a maxilla? Your mandible is the lower jawbone and the maxilla is the upper jaw bone.

I hope you enjoyed the ant facts!

All ants aside, here is a picture of my chest. My mom took this picture today. One of my mom's ebay friends said that I probably won't have much of a scar and that she would need to buy me a motorcycle. I don't know if that is a good idea, because I am not that great of a bike rider -- high speed, at least. My mom thinks it is definitely not a good idea, but she thought that was pretty funny. I don't get it. My mom said I would understand when I'm older.

I'm dying to pull off all of these strips. The ones on the defibrillator scar I don't want to mess with. The scar seems un-healed and the strips seem pretty stuck (think of pulling off chest hair with tape; I think it would feel worse than that).


Tuesday, April 6, 2010

Before Luna, There was Midnight

My 4-year-old was drawing in a notebook and she left it on Malkolm's bed. I quickly flipped through, recognizing it as a notebook Malkolm has used in the past.

I found a partial story Malkolm wrote. When I asked him about it I was surprised to hear that it was the beginning of "Luna" ... before it was Luna!

I included it below:
The moonlight gleamed through the window on to the little 4-year-old girl named Rebecca. A small, but curious sound made her jerk awake. Slowly and sleepily, she arose from bed. "What was that?" she wondered. She grabbed her glasses and put them on.
Thought this might be interesting for those of you who have read "Luna." I know when I write -- even these blog posts, that sometimes it starts out as one thing and ends up as something completely different. As a word nerd myself, I kind of got a kick out of seeing the beginnings of a story that ended up as a very different story.

Update on Malkolm
We had another good day today, but tonight Malkolm said he has a feeling in his heart that he didn't have before the surgery. He said it's throbbing sometimes and he can feel it all the way to his spine. I think it seems to happen when the ibuprofin wears off, so I'm guessing it's just the surgery healing and we just need to make sure we stick to the 6-8 hour meds schedule. Muscle cut off doesn't heal overnight, eh?

We will ask when we go to our next appointment in Atlanta next week.

I have started to work some a little with Ebay sales, and I think this is probably the first time in my life when I just don't want to work. At all. Just want to hang out with the kids and struggle with the housework. Just be. Not feeling at the top of my game by any means.

But the important thing is that Malkolm continues to improve. He is not running or anything yet, but he's up a lot at the computer, or sitting on the couch. We went to church on Sunday too and he seemed to handle it well. He inspires me in so many ways.

I'm still a bit worried about Malia. Actually, worried is probably too strong of a word, but concerned is the only other word that comes to mind right now and I know that's too strong as well. The thing is, I'm feeling like she needs more than I am giving her. She is definitely cuddling more now -- she never used to want to cuddle, even when she was a baby, she was just always pushing away. Now she will sit on my lap when we're watching TV, or come to me in my office and fall asleep on me as I sing to her.

Malia played a lot with Maina today. It seems Malia has found her niche there, knowing that she is making a difference, and seeing Maina light up when she calls to her. Maina was also following her around the house like a shadow. Everywhere Malia was, Maina wasn't too far behind.

Malia is just old enough to be independent and just young enough not to be independent, so she really does get stuck in the middle -- so just to see her play so much with Maina today was really very cool. I hope this continues -- there was a joy in Malia that I haven't seen there for a while.

Sia was playing hide and seek with the girls tonight, and Maina was his hiding partner. Every time Malia called to Maina, Maina would give away their position, because she was just so excited to hear from her big sis. Gosh, I love that. And Malia really felt special. That was the best part.

Ok, well. I think I'm going to call it a night.



Monday, April 5, 2010

Mr. Malkolm

Two of my very favorite Malkolm stories. ...

2008 Feb 01
We recently went on a trip with Sia to Florida to drop a volleyball recruit off at the Orlando airport. On the way back we stopped at a place that had tons of oranges stacked up outside and it was basically a total touristy kind of gas station. When you walked in the door you saw a big fish tank that went from floor to ceiling, there were trinkets of all shapes and sizes, including dead baby sharks in formaldehyde-filled jars with Florida painted on the outside (nice).

Anyway, we all had to go potty, so the boys went to the boys' bathroom, and the girls went to the girls' bathroom. After we finished, we all came out, and I was surprised to hear Sia tell Malkolm to get some candy, because Sia always says no candy when Malkolm asks him (and Malkolm asks him every time we stop).

Apparently, as I found out later, Malkolm wanted something he saw in the bathroom -- but Sia told him no. Malkolm asked his daddy for $.75 for a "glow stick" he wanted to get from the bathroom dispenser for only THREE QUARTERS! (Malkolm was quickly redirected to the candy.)

2008 Feb 11
I have been selling DVDs on Ebay for a couple of months now. Over the course of this time, Malia, Malkolm and I have been to the post office on several occasions, dropping off or picking up packages. Every time, Malia asks if she can get one of those stuffed animals the Post Office always has sitting out. They are like beanie babies, and there are teddy bears, doggies ... a general assortment of kid-friendly stuffed animals. They range from about $6 to $12.

This particular trip, we were getting ready to go, and Malkolm said, "Wait Wait! I need to go get something!" I asked him what and he said it was a surprise, so I waited. He reappeared with a small plastic bag full of coins from his piggy bank. I asked him what it was for, and again he told me it was a surprise.

We got to the post office, and while I was waiting in line, Malkolm and Malia were over in the corner of the small post office lobby counting the money. When it was my turn we brought it up to the counter, and it turned out he had $3.79. He wanted to buy Malia one of the stuffed animals. I told him that wasn't enough, but that I would pay the difference because I was so proud of him for thinking of his sister.

He took her by the hand and went over to the stuffed animals and let her pick out one. He really wanted to get her the color-bear, but that one was $12. They chose a $6 Blues Clues dog named Magenta. After we paid and we were walking out the door, both my kids were beaming ear to ear. Malia, happy with her new toy, and Malkolm because it made him feel so good to do this for his sister.

When we got out to the car, he said, "Oh, mom! I just want to give her everything she wants. Look how happy she is! She is so happy! I just want to make Malia happy!" ... of course, on the inside, I'm melting at this point.

I laughed and told him that as happy as he is right now, for me to see him treating her so preciously gives me 1,000 times more happiness than what he is feeling. (he was impressed!) This presented the opportunity for us to talk about how we are all God's children and how much God loves us and we imagined how God must feel when we, his children, are treating each other preciously. ... it was a nice trip to the post office. One that will stay with me for a long time.



Sunday, April 4, 2010

Easter -- The Story of Jesus' Resurrection

I am feeling great as I get up this morning. I look down at my Easter basket and smile. I take it from my bedroom into the living room and wake up my sis. I am feeling no pain, and that's what it's been like for a couple days now. After getting ready and snacking on some of my Easter candy, we're off to church! (Boy, was it good to get out of the house!) Here is the summary of what we learned (or the story of Easter, which is what we learned).

Easter is not all about bunnies. It is not about egg hunts. It is not about getting treats and toys in baskets from a fluffy bunny. It is about Jesus' resurrection.

Crucifixion was a painful way to die back in Jesus' time. When Jesus was nailed on the cross, two nails were hammered through his hands. We saw a replica of the nails today at church, and they were about a foot long each. The soldiers mocked him as their "king" and pressed a crown of thorns into his head. This, of course was very painful and bloody. They put a purple robe on him, and then tore it off. All the bloody stuff stuck to it, and it practically tore off his skin. They thrust a spear through his side and punctured the lung. As you can see, crucifixion is very painful.

Before Jesus died, he said: "Father, forgive them, for they know not what they do." After Jesus died, The sky got all black, thundery, and rumbly. You would be able to guess what this is, of course.

When Jesus was buried, he was put in a tomb. A bunch (more than just five or six) of soldiers rolled a boulder -- way taller than an average doorway -- in front of the entrance to the tomb. Then they patted a bunch of clay around the stone, in case Jesus was still alive. The clay hardened, sealing the tomb airtight. There were two guards that stood by the entrance day and night.

Three days later, there was an earthquake at the tomb. While everything was shaking, two angels came and pushed aside the boulder. The soldiers fainted, and the angels stood outside the tomb entrance. Then Mary -- Jesus' mom -- came with a friend, Mary Magdalene, to the tomb. When the angels saw them, They said something that was like this: "Jesus is gone. He has risen."
This is the story of Jesus' resurrection. For a more detailed version, (and probably more true with something similar to what I have here) look in the Bible.

Just as a closing for this post, I would like to thank you everyone for the gifts. Thank you for the egg sleeves- they are great! We used them last night, and they TOTALLY WORKED!!! The cool Star Wars transformer is really neat too! At first, I didn't realize what it was. Then I read the bottom of the box. I LOVE TRANSFORMERS!!!!! I practically collect them! I have been playing with it like crazy since I got it! Thank you! I think that the blanket is really soft! How did you know my favorite color(s) was all shades of blue!? It is just the right size for laying on the couch and watching movies. Thank you! The book -- Falling Up by Shel Silverstein -- is great! The moment I started reading, I was instantly hooked! I finished it that day, and now I have a perfect nighttime story book for my little sister! Thank you! Thank you everyone especially for all the kind and encouraging notes, e-mails, and comments! They really kept me going when I was feeling badly.

On another note, I do not know if I will get used to this whole blog thing. Staring at a blank screen is the hardest part when I start on posts. Once I start typing, it gets WAY easier. That is how it is when writing stories, too.


Saturday, April 3, 2010

Where is the Maid?

I could use a maid right now. Not just any maid will do, though.

I need one that likes to constantly pick up half-filled water cups, do dishes and pick up the same toys 3-4 times per day. This maid will need to have the patience of a saint, and the mopping skills of a Merry Maid, and not be afraid to vacuum the same area of carpet 17 times during the day just in case somehow crumbs and small bits of plastic and paper always gravitate to a certain spot.

This maid will need to be able to launder the same size 6 skirt several times a week, because there might be a 4-year-old who forgets that wearing it for two hours doesn't mean it needs to go into the wash right away.

This maid will need to be able to track down small, baby-attractive items that mere mortals miss, but that a 10-month-old easily spies from 20 feet away.

This maid should also have excellent bite-dodging skills to be able to deftly avoid the unbelievably sharp teeth of a 10-month-old, and be able to continuously pick up cheerios which always seem to be scattered about the house.

This maid should be available for water runs, bottom wiping, remote finding, temperature adjusting and random cooking at the drop of a hat.

This maid should require very little sleep, if any, and be available 24-7 to customers, clients and family.

And because I believe in the team effort, I can continue to take care of some things as well.

I will continue to handle the on-demand hugs and kisses for three amazing children that, although sometimes argue too much with each other, are loving and happy and really energetic. I can also take on the task of cuddling, playing Candy Land, chess and reading many short books to these short people running around the house. And when the need arises for cheesy popcorn, I can make a big bowl and sit with the kids on the couch while we watch silly movies (I will make sure we will lift up our feet to let the vacuum through, though).

I will go ahead and continue to have the long philosophical discussions with the 9-year-old, sit on the lap of the man of the house (when appropriate), and laugh heartily of the endless stream of knock-knock jokes that don't totally make sense (but that the kids seem to think are hilarious). And, oh, I will also de-tangle the 4-year-old's curly hair in the bath and sing night-night songs when I tuck all three in at night.

Hope that's ok.

Any takers?



Little 9-year-old, Big Understanding

Malkolm played chess, watched movies, created a movie night for his cousins and slept on the couch. Good day for him -- he only had two doses of ibuprofin today!

When we were in the hospital, when he was still in the ICU, the CEO of the three-hospital system came by to see Malkolm. They talked chess strategy and in our chess game later in the day, he implemented it and beat me (haven't heard the end of that yet). She sent him a book which he received today.

I thought it was pretty cool that she not only took the time to come see him and meet him, but also to talk with him, find out what book he was looking for and then send him that book. It is a Roald Dahl book called "Boy." I'm sure he will start reading it tomorrow -- we had company today so he was really going all day.

Right now, he's tanked out on the couch, laying on his side again!! On his SIDE! Gosh it's so great to see him doing so well.

His wounds appear to be healing well, and they are really starting to itch now, so that's good too. He's kind of stubborn when it comes to dealing with his 4-year-old sister, but that should iron out in time.

He's totally aware of it, and we talk about it first thing in the morning almost every morning so we can consciously try to treat her better. So far so good! I feel like I am a bit more grumpy and impatient, and Malkolm and I are sort of helping each other in that regard. He'll remind me when I start to fly off the handle with Malia too.... Like ... I was tucking him in on Wednesday night. Malia is sleeping in the top bunk now, because he can't climb up the ladder. I was headed out the door after telling them goodnight and he mouthed to me to give her a kiss! Of course, I sort of felt foolish -- why I wouldn't think to do that myself -- especially knowing that she is stuck in the middle and doesn't get the same kind of attention that the other two get ... so I climbed up and cuddled with her a bit and when I left the room Malkolm gave me a big thumbs up. Little 9-year-old with Big understanding.

I'm doling out more much-needed hugs these days to the younger two. Seems to be somewhat like therapy in a way.

I'm not really sleeping well, I keep having dreams about Malkolm's surgery and his wounds and I wake up several times during the night feeling like I need to go check on him. I hope this doesn't last for long, I don't like it very much; it's unsettling. When I'im awake I can check my thoughts and curb my thinking when it needs to be curbed, but my dreams aren't cooperating with that. It reminds me of my dreams when my babies were newborn --always dreaming about something bad happening and me not being able to stop it or help them. I don't like those kind of dreams much. Could live without them.

Well, speaking of dreams, I'm tanked too. Better grab some sleep while I can.

-Jennifer P.

Thursday, April 1, 2010

Our First Follow-up Doctor's Visit

We drove to Thomasville today to see a pediatric cardiologist for our one-week follow-up. We left the house at 7:30 a.m. and returned just after 2 p.m.. The kids got home and crashed, so I got to work for a while. Trying to get more DVDs listed.

We took the file for the X-ray we had taken yesterday on CD to the doc. CD! Can't believe how far we've come with this whole digital age thing. I remember back in the day we had to wait for the films, and then carry those bulky things around to the different doctors who needed to see them. Not so anymore!

Of course, it would be helpful if the doc could open the file -- when we left, he still hadn't seen the x-ray, and we're still waiting on some sort of communication from the docs office. I left a couple messages, hoping to hear back from them today, but since it's just after 7 p.m. here now, I don't think that's going to happen. The radiologist also called and left messages, so hopefully one or both of us will get a call back.

Our appointment was at 9:30 a.m., and they called us in to the room at 11:45 a.m.. It actually wasn't too bad of a wait, the atmosphere was pleasant and I had good company! :D

As far as Malkolm's incision sites, go, there is some unexpected redness around the defibrillator site that wasn't there yesterday, so just to be on the safe side, we have some antibiotics that we will be taking for 10 days. The sternum incision appears to be healing really well.

Doc did say that Malkolm's heart was a LOT quieter. I haven't tried to listen to his chest yet -- before his surgery, I didn't need a stethoscope to hear the murmur, I just would put my ear on his chest and I could hear it loud and clear.

We will have appointments monthly with this cardiologist group for a while, and monthly appointments with the defibrillator group for a while. We are going to get very used to uncomfortable chairs, multi-colored hard carpet, elevator music and pleasant plant pictures on the walls for the next several months.

But, the good news is that Malkolm's story (and his story) has brought in just over $5,000 (this is the free and clear total after ebay fees and taxes) which helps tremendously with the financial burden of these follow-ups and travel to get to these appointments. This includes a very successful fundraiser Malkolm's cousins in California held -- selling plates of food to help their cousin. These nieces and nephews of mine and their families and friends went way above and beyond in their efforts to help Malkolm.

I must say, there is a certain level of appreciation and support that you have to see to believe that runs through from the youngest Poyer to the oldest. When I met my husband 19 years ago it was clear to me that he was from a special family, and I am so proud to be a member of the Poyer Enterprise (as one of his brothers refers to the Poyer clan). There is a lot of love, that is for sure.

Malkolm is improving noticeably almost every day -- and today when I went in to wake him up to go to the appointment, he was sound asleep and actually almost on his right side. He's always been a side-sleeper and this whole laying-on-his-back-propped-with-pillows thing is just not his bag and has not been easy for him. Seeing him cuddled around his new teddy bear (and although not quite totally on his side, but getting there) was just a really nice way to start the day. Up to this point, he has been unable to do that because of the pain associated with that position.

I took this pic this morning before we left for our appointment. Other than the fact he looks tired and tends to slump a little now, I still can't believe he had open heart surgery just over a week ago. He is reading again, he read the second book in the Percy Jackson series yesterday, and the third today. He is still signing stories -- it is taking him a bit to get back into the swing of things, but he is slowly bouncing back.

Right now, the kids are watching The Ten Commandments. After we watched the animated Prince of Egypt, Malkolm asked if I had any copies of The Ten Commandments -- and it just so happens I did have one that had a ripped plastic cover which I hadn't sold yet. He is comparing and taking notes. He said he wants to read the story in Exodus again to see how the movies differ or align with the Bible. We talked about the Isrealites again -- how they walked through the sea on dry land and still they doubted. They had food falling from the sky for nourishment and still they doubted. They had a pillar of fire between them and their enemies and still they doubted. Amazing, human nature, isn't it?

I guess I should go monitor this. It's been a while since I've seen the movie, but I think I recall some grown-up stuff we might need to skip over.

Today was a good day, though, a good day indeed.


Wednesday, March 31, 2010

Ho, Ho, Ho!

I always knew my good intentions to mail out Christmas cards would come in handy some day. We're using all the stamps from Good Intentions of Christmas Past to send out Malkolm's stories, plus we bought 300 more stamps today. Looking at all these older Christmas stamps, wondering why I never got around to sending out Christmas letters and cards except for maybe once every five years or so.

We're down to the last stack of addresses, and we may have them out tomorrow if all goes well.

I remember when I started this stay-at-home mom thing. I thought, "Oh, the time I would have!" I just knew not spending 60 hours in an office somewhere would lead to my having way more time to do stuff with the kids and Sia, to send out Christmas Cards every year, to really keep the house clean, often have some baked goods baking in the oven ... and we must not forget always to make healthy dinners for my family. Well now. I think I'm in the middle of some kind of cruel joke. There's never a clean house (unless Sia does it, or someone else, like my niece, who cleaned the house just after we left for the surgery -- when we returned home from the hospital, I nearly fainted), we have peanut butter and jelly for dinner more often than not, and there are only baked goods in the oven because I occasionally move them there to clean off the counters.

I knew Malkolm helped out a lot around the house, but with him supine on the couch, it's even more apparent to me -- before his surgery, he would come home from school, help me with the Ebay packages, do his homework, empty and load the dishwasher, put out his clothes for the next school day, pick up the living room, help fold clothes and hold and play with Maina as I finished whatever I needed to do to get the packages to the post office and get dinner started. He's been helping fold clothes since he was 3-years-old (I think it is fair to say it is his least favorite chore, and he does not miss helping out with the laundry right now).

This young man has also been waking up to his alarm clock since he was in kindergarten. Setting his alarm the night before, getting himself up every morning without assistance, getting dressed, making and eating breakfast himself, taking his heart medicine, getting his school books and backpack ready for school and then waking me up to get him off to the bus stop.

I remember when my husband bought the alarm clock for Malkolm when Malkolm was getting ready to start kindergarten; I scoffed. He won't even use it, I told my husband, he's too young. I remember my own days of sleeping through the alarm day after day, my mother threatening to spray water on me to get me out of bed for school ... and then, here's this little kid, who has turned out to be more responsible about waking himself up than many adults I know, including myself. I must admit I was totally wrong about the alarm clock.

I guess this is all helping me to have a bit more self-discipline and also encouraging Malia to step up and take on more responsibility, which she seems to be taking in stride. I actually enjoy cleaning side-by-side with her, she has a very bright and encouraging spirit about her when we are cleaning together.

All in all, things are moving forward. Just looking at this pic from the night before the surgery, when we were messing around in the hotel room just taking random photos ... Malkolm has come miles since then, and the long and short of it is that I have too. I think that God really works on us through our kids, and my eyes are opened and my faith is stronger, and although I'm tired, I am growing and learning and enjoying every minute... even the tired and grumpy ones.

And maybe this year we will mail out Christmas letters ... oh um, well maybe not, we don't have any Christmas stamps left, after all. ;)


Tuesday, March 30, 2010

My Greek Hero

Now we're home -- and dealing with a few new challenges. Our first responsibility is to keep the incision sites clean: the sternum cut that seems far too long, and the 3-inch incision over his left pec housing the defibrillator, and then the two holes where the tubes came out. Watch for fever, strange coloring or unexplained sweats or breathing patterns. So far so good.

Malkolm is slowly becoming more himself -- yesterday was a rough day; he was irritable and angry -- almost depressed it seemed. Totally picking fights with his little sis, and in general not handling things well. Of course, he had heart surgery less than a week ago, so some of the whole fish out of water thing should be expected, but there was just something not quite right about his mental state even in spite of the surgery.

Today, he was more himself than he has been since we left the ICU. I am seeing flashes of his normal sense of humor and I feel like the mood swings will go away completely once he's been off the heavier pain medication for a while. The ibuprofen seems to be managing the pain well, so we're sticking with that for now.

I realized yesterday that I never really thought about the psychological aspects associated with the surgery, and wasn't really prepared for the extra stuff outside of just taking care of my little man. He was just so courageous when it came to this whole thing, it's easy to forget that he's only 9. I know I keep saying that, (as much as I say it, should be enough reminder for me) but I guess if you knew him you would know exactly what I'm talking about.

So, now I'm kind of looking into this; talking to people who have had major surgery and asking those who have had children who went through something similar. I'm finding this reaction is not all that uncommon, and we will just ride the waves until things settle a bit.

The cool thing about having a child like Malkolm is that we can talk to him about this and he really understands it. He gets it. We had a long talk with him last night at dinner, and we all decided it would be best not to use the Tylenol 3 (Tylenol with codeine) anymore, and we can see today that it was the right decision. I do think it has made a huge difference in his mood, and he is not in any more pain than he was while taking it.

When his children's pastor was talking to him on the phone, and he asked Malkolm if he had run a mile yet -- Malkolm told him, "yeah, I just got back" without missing a beat. I have to admit I kind of breathed a sigh of relief at that point. And today, when he was reading the second book in the Percy Jackson series, he was going on about the parallels with "real" Greek mythology and the names of the characters and their attributes. I mean on and on. To the point where I had to tell him to go back to reading. This is the Malkolm I am used to, the ever-analytical, kind and giving boy I know to be my son.

He received a cool gift basket yesterday from our church, it was like junk food heaven. And today, another gift basket from a classmate -- who walked two blocks just to bring it by (it was heavy too, I was totally impressed!). Malkolm shared everything with Malia without hesitation.

People have called and are extending support in ways I never thought about. In a way, it's almost like having a new baby. We dusted off the baby moniter and put it in his room so he can call for help when he has to go to the bathroom at night if he can't get out of the bed by himself. So far he's doing really well, though, and it seems he is a stubborn goat and wants to do everything himself. I told him that he has to let me help him sometimes, just for my peace of mind. And the docs said it's good for him to do as much as possible, as much as he can handle. I'm thinking we might go for a walk tomorrow.

I am struggling a little to get him to drink plenty of water. This is a big deal and can have a huge impact on his recovery. He understands that if his body retains fluid, the fluid from the surgery (that was draining out of those tubes for a while) will also be retained, and this would not be good. If his body gets dehydrated and starts holding on to fluids we could have some real problems -- that is something I need to be more on top of ... maybe I'll set the alarm on my phone for every hour and a half or so, so I can remember to make him drink more. One thing that always works as an incentive is just reminding him that if he does get dehydrated he might have to get and IV to get more fluid, and that pretty much stops any complaining in its tracks.

At one point, he was talking about three giants that came into Percy's gym class -- one named Marrow Sucker, one named Skull Eater and Joe Bob. Apparently (bear with me here), they were cannibal giants, and Malkolm was trying to figure out why Joe Bob was the name of the third. Asking me all kinds of questions about what I know about Greek Mythology (times like these I wish I'd paid more attention in Mrs. Rooth's class during the Greek Mythology unit my sophomore year in high school). Wondering why the author named the third giant Joe Bob. We agreed it may be a joke -- because the other two names are so intense, and then there's this unassuming country-esque name like Joe Bob. And then the fact that the name for the giants actually translated to mean "Canadians" -- humor not lost on him (but sorta lost on me).


Tomorrow we have to go get a chest x-ray at a local radiology clinic and then Thursday we are headed to Thomasville to go to a pediatric cardiologist for his one-week follow-up -- and we bring the x-rays with us. The cardiologist we usually see only comes to Valdosta every so often, and he is not in town this week, so we travel. Guess I should get used to this.

April 12, we go to Atlanta again for the defibrillator follow up. We will go no less than every 6 months.

I am a bit distressed that the insurance denied the claim for the genetic testing, which means $5,400 out-of-pocket cost for Malkolm's testing if we can't finagle some sort of deal with them. What a buggar.We'll find out more on the 12th, but the docs seemed to think that maybe the genetic testing people might be willing to work something out.

We finally remembered to turn in the paperwork for his school so we will start homebound sometime soon. This is where a teacher comes to our home 2-3 times a week (three hours a week total) and teaches Malkolm what he is missing in class. He is also not marked absent these days either. He will not be going to school till after April 24. Long time to be absent, but I'm not really worried about him keeping up. He's a pretty sharp kid.

Malkolm has already survived a couple of direct chest pushes from his little sister -- sometimes she forgets and starts messing with him -- and he has learned to give her warnings when she starts to get a little rowdy around him. She was devastated when she realized she had hurt him; guess this is a learning experience for all of us.

ok, well. He's still up. Had to wrestle the book away twice already. Seems my little Odysseus doesn't want to exit book world. Time to follow up and make sure he gets in the shower and then on to bed.


Sunday, March 28, 2010

Arriving home!

Hello, everyone! I just got back from the hospital! My mom set me up with the laptop on the couch, and I started to type.

Back at the hospital, my feet ached when I started to walk, because I had been lying in bed for so long. My dad taught me a trick to relieve the pain. He said to rotate my foot while "pointing" with my big toe. It totally worked! :D

There are a bunch of small bandage strips down my chest on the place where they cut into my chest, and a few on my upper-left chest, where they put the defibrillator in. There are two small holes below the strips in the middle of my chest, where two drainage tubes were. It really hurt when then they pulled them out, and the holes that were there looked pretty ugly.

I had all my IVs and band-aids removed before we left the hospital. One of the IVs had to be replaced when I was awake last night, and they had to do three attempts to put in the IV. It was very painful.

When we took my first shower before we left the hospital today, I was afraid the soap and water would sting on my chest where the strips were, but it ended up being pretty comfortable. I loved the warm water on my skin.

I would like to thank my cousins in Long Beach, California for selling plates of food to raise money for my surgery. They had the fundraiser yesterday. THANK YOU!!

I can't wait to get started on signing all those stories that sold while I was in surgery! Thank you for all those who have cared about me and bought stories, and thank you for all the nice compliments about my writing. It makes me feel wonderful!

I have a few aches every now and then, but I don't mind much. It was a big relief to get out of the hospital!


Saturday, March 27, 2010

One Step Closer to Going Home

I wager most parents think their child is amazing. I remember when Malkolm was born, his head was shaped like an ice cream cone, his skin was wrinkly and hairy and his face was all squished up ... and I thought he was the most beautiful baby in the world. I remember when they placed him on my stomach, I didn't care if he had 10 toes or no toes. I didn't care -- I loved him intensely and immediately.

I remember wondering when I was pregnant with him ... wondering what it would be like and how scary it might be to have a special needs child, and I knew the moment they placed him into my arms that it didn't matter. I didn't care. I loved that little naked child more than I ever thought possible, especially for someone I hadn't met before. When they told us he was perfect and healthy, that was just icing on the cake. It wasn't until three days later that we found out there might be something wrong with his heart, and about two months later when our journey with HCM would begin.

Thinking about how far we've come, and seeing the young man he's turned into and the man he is becoming -- I just can't imagine our lives any other way. Life is good.

I have some great news! Yesterday at 2 p.m. we were moved to the Step Down unit. This is the place where patients go when they no longer need the minute-to-minute care of ICU. And, even better news, not 20 minutes ago, they took the drainage tubes out!!

Malkolm was not happy about the pain associated with that -- he told me that I was banned from cuddling with him (one of the big things we were talking about was when he got the tubes out, I could climb in the bed and cuddle a bit). The doc that took the tubes out asked him why he was mad at me, because she was the one that pulled the tubes out. And he matter-of-factly said, "because she allowed it!" I could tell that it was really feigned anger, because it really did hurt, and of course, within about four minutes, still with a forced fakey scowl on his face, he said "I guess you can cuddle with me a little" ... heh. So I got a few minutes in before they came to take him to x-ray. I offered to go, but he wanted to go by himself. Ok, well, at least I got the courtesy cuddle I was waiting for.

His usual quick-witted sense of humor has been a bit dimmed by his medication and pain, and I think mostly by the frustration he's feeling by not being able to use his arms to pull himself up into a comfortable position.

But he does have moments where even with his irritation his sense of humor shines through. Like when he was so mad and frustrated in the ICU when he had to wait for five hours to get a drink -- and after being told numerous times he could not have anything yet, he huffed and puffed and threw as much of a 9-year-old tantrum as he possibly could with the tubes and such limiting his actions. I told him that he would be able to have any drink he wanted once they cleared him, and he looked at me and said, through his tears, "Well, then I'm going to have a CAFFEINATED BEVERAGE!" (knowing full-well we do not usually allow him to have caffeine and that he probably wouldn't be able to have a drink with caffeine in it.) Might be another one of those you-had-to-be-there jokes.

We've had some issues with his blood pressure and heart rate (too high), blood sugar (rising) and fever (little too high at times), but it seems these things are pretty normal for anyone going through a surgery like this and are seeming to regulate themselves now. Of course, none of these things are normal to us, but it is what it is -- dealing with it in baby steps.

I read to him briefly during the really tough times (thanks again Mette for these great books!! Soothes the savage beast!) and that really seemed to help calm him down and then he could sleep again. My mom read to him too, and I have to admit, her voices are way better than mine. I remember she used to read to us when we were little, one of my favorites was The Mouse and the Motorcycle (I read it to Malkolm several years ago). I always loved Ralph's adventures when mom read them.

Last night, Malkolm and I were talking. He was too wired to sleep and so we were just talking about anything and everything -- I offered to read to him, but the light was too dim and I was struggling over the simplest of words simply because I couldn't make out the letters. He thought that was hilarious, and he started giggling -- except, because of his pain, he couldn't really giggle, so it was more of a high pitched slow wail. Just hearing it, I started laughing and then we were both laughing (wail) and it was hurting him, but he couldn't stop (wail). Just when we'd get it under control, he'd say something silly like "fuzzy bunny" or some other random ridiculous statement (wail), and we'd both start laughing again (wail). The nurse actually thought there was something wrong and came in to check on us. I felt like I was at summer camp breaking curfew, but wow was it nice to laugh with him.

After we finished laughing, he started to fall asleep and I just sat with him until he drifted off into a relaxed and fitful sleep, which was literally just about two minutes. I just sat there for a while looking at him in the silence echoing in my mind with sounds of his laughter, the dim light framing his face with the shadows. His long eyelashes draping over his cheekbones. His dark brows over those eyes. Just marveling at this wondrous gift that God has given us and so relieved that it seems the worst is over. I think he is the most beautiful boy on the planet, inside and out.

Malkolm is actually sleeping right now, the whole taking out the chest tubes was a pretty intense experience. He's earned a few solid winks, I think. Like the old Irish proverb says: "A good laugh and a long sleep are the best cures in the doctor's book."

More to come later ...



Thursday, March 25, 2010

Big Bed, Little Boy

Wow, what an eventful 24 hours. We are in the ICU with Malkolm. Only parents and grandparents are allowed to come in, and only two at a time. I am emotionally drained, physically drained, but in a way uplifted by so many who have been affected by Malkolm's story and his heart (not literal heart, but I guess that sort of applies too). We have had little celebrations, like being taken off the breathing machine at 3:45 this morning -- and just about 15 minutes ago, the feeding tube came out.

He is slowly sipping apple juice and it's staying down which helps a lot with his spirits.

Since the article came out in the Atlanta paper, Malkolm has turned into a bit of a celebrity here, even though he's mostly unaware of the scope of this. I'm not totally sure how much he understands about what he has started with this idea. Not just the funds coming in from his story, but moreso the message that his faith and his writing brings with it.

I do want to make sure everyone understands that when Malkolm had the idea to sell his story to help pay for his surgery, we did not expect or even imagine that it would be like this. We were prepared to pay for the surgery using whatever means possible, because this little man is our baby (and a pretty cool kid, I think I'd like to keep him around for a while!! ), but I have to admit, not having to worry about my missing work and just being able to focus on Malkolm is a big deal, and a huge blessing.

As a work-at-home mom, I work more hours than I care to admit, at odd hours, many times into the wee hours of the morning. I do this because being around my kids, being available to my kids is something that is very very important to me. I missed SO much of his first three years because of my work (not working from home). If I had a dollar for every time someone told me "Hey Jenn, you don't live to work, you work to live ..." well, I guess I wouldn't need to work then, eh? (But knowing me, I probably would anyway).

I also want to make it clear that even without these funds from Malkolm's auction, we would have had the surgery anyway -- I'm concerned that some people might think that if we didn't raise a certain amount of money that he wouldn't have had the surgery, and that's just not the case. Although we are on a never-ending payment plan for our medical bills (my youngest was born 30 days early, and we spent a week at the NICU in Macon), we make it work and like everyone else, we do the best we can with what we've got. And we are unbelievably blessed with three amazing children, a strong support system of family and friends and the many other intangibles that go along with these things, money or not.

You know, when you have kids -- when you have it in your spirit to bring these little people into the world, you don't ever think that you will spend time in an ICU following heart surgery. Heart surgery is something that happens to older people, not children, right? However, from the lovely notes of encouragement I have received, I have found that MANY children have heart surgery and I can totally relate to everything that their parents are going through or have went through and I have appreciated each heart-written story of how their children have fared.

When Malkolm had this idea to sell his story; this 9-year-old didn't really have an idea about cost or anything -- he just wanted to help. I'm so thankful for my friends on the Ebay powerseller board, without their encouragement, we probably would not have done this, and it definitely would have not gotten around like it did. My friends, most of whom I have never met in person, are part of a community of people who banded together in vociferous support for my son and his idea and I don't think I can ever fully repay their kindness.

I am still laughing about our first night with the Ebay listing, Malkolm and I watching the notifications pop up announcing each new sale, high-fiving each other till 1 o'clock in the morning while the rest of the house slept, with me sprinkling words of encouragement in there (Malkolm, don't worry if you only sell 20 stories -- this is still really neat!! etc etc).

Ahhh, well. For now, we'll just focus on him getting better. He's proud of his "pain button" that he can push when he needs it, and he's not needing to push it very often at this point, so I'm pretty happy about that.

We're getting kicked out now for about and hour and a half while the docs do their rounds, so I'm going to close this long and somewhat rambly post now.

I'm just looking at him laying in the bed here -- this boy who is so much bigger than the little boy I have in my head, and yet so much smaller than this bed he is laying in. The bed makes his chest look not quite as broad and his hands look not quite so strong. I can see he is turning into a man right before my eyes, but he is still my baby. Always will be my baby.

Wednesday, March 24, 2010

In God's Hands

When our children are young, we do everything for them and they can't really do things for themselves. We change their diapers, we put food into their mouths, we cradle them in our arms when they are sad, hungry or maybe just want to be cuddled.

As they get older, they start to learn to do things for themselves. They get more and more independent as time goes on. I remember when Malkolm was just about 2-years-old, a woman I worked with told me that the weaning was the first step to him being an independent adult. That when he weaned, he would from that moment gradually continue the separation process until he was grown and living with his own family. I remember not really liking that way of thinking -- even though technically it's true; that's not something you want to think about when it comes to your children.

I know if Sia and I do our jobs correctly, ironically, we are teaching him to live apart from us, when every fiber of my heart wants it to be otherwise. But, that is just part of the blessing of being a parent. That love that we feel -- when it seems like there just can't be any more, another gusher opens up, spewing joy and happiness into every nook and cranny of our lives.

So now, here we sit, in this waiting room. There are big yellow circles on the floor, cheerful toy tables with colorful balls and beads, chairs that are much too small for me to ever sit on. And the families. Families waiting like us for their children to be delivered safely into their arms following their procedures.

There are white phones placed among the chairs in the room -- the white phones that bring the news from the surgeon during surgery. The white phones are a visual connection that we have with the surgical staff; even though we can't be in the room, just seeing those phones is comforting in a way.

One of the nurses just called not too long ago and let us know that Malkolm went to sleep with no problems, and the surgery was underway. This was about 9:45 a.m. .... We're expecting a call in about an hour with another progress report.

My baby, in God's hands. Nothing new. His strong hands have been carrying Malkolm since birth and I know Malkolm is not alone.

Thank you for your continued support and prayers. What a difference this makes!!!