Too young

Sometimes we get wrapped up in our own lives and our own issues that we don't even realize that there are people, real people that we see day in and day out with real problems. Really big problems. I was watching this thing on TV this afternoon and it was about a minister who goes around the country and works with youth. His message is harsh - especially to teenagers who are hearing it. He says "Everything you care about is backwards. The way you are thinking is not the way God wants you to think. The way you see the world is not the way it is. " He yells, jumps up and down, throws things, cries, anything he has to to get their attention. He really calls them, and us all, out. When talking about how his choice of methods that he can't love Christ half way. He can't see how if any of us really thought about Christ did for us, and what our actions or lack of actions did in return to Christ, how we could think about anything else in the world. He said "Christ DIED for me, I'm just doing what I can to make Him cool to these kids".
One thing about these kids really stuck out to me though. At one of his retreats, he said he does this at all of his retreats, he asked all of the kids who had ever thought about ending their life to come to the front. One by one by one by one by one kids, teenagers, walk up. I was sitting on the couch just crying. What could be happening to these kids that they feel worthless. worthless. I thought that he, Jason, was going to go hug them or tell them that he had help for them but he didn't. He turned around to all of the kids who had never felt this way and said "What are you going to do about this?". There were tons of kids standing in the front of the room. Everyone knows who these kids are - the overweight ones, the ones with bad teeth or bad hair, the ones who look too pretty, too used, we all know these kids. RIght about then, tears all down my face, Parker woke up and I went down and picked him up and told him how proud I was of him and how perfect he is and how he is the best thing I have ever done with my life and how I am complete because of him. Everyone deserves to hear that. I realize now how unbelievably, undeservingly blessed I am that I have been surrounded by that message since I was born by my parents and now every day by my husband.
I think its a need. Like food and water. We need a connection - a sincere connection. I think that's why young people are so desperate to look the right way, wear the ring clothes, be around the right people. To do whatever it takes to hear someone - anyone say "you make my life great". Love and acceptance are not just nice commodities. People have literally died trying to find it.
I don't think I have a point in this post. I guess I was just thinking that we should all drowned each other in love and appreciation. How can we love Christ and not?

Two posts in one day?!?!

Jamie Spears (the 16 year old sister of Britney Spears on her recent pregnancy:

"It was a shock for both of us, so unexpected," she said. "I was in complete and total shock and so was he."

Poor thing - I guess no one ever told her where babies come from. All I have to say is this to the young girls - IF YOU PLAY WITH FIRE, DON'T BE SURPRISED IF YOU GET PREGNANT!!!!!! (I mean burned...)

Date Night

Last Saturday night was "date night" at the Hebda house. Parker was asleep and wine had been poured. We decided not to spend our date night glued to the TV but instead to play a game of Yatzee. This is one of two games that I can beat Jon at (the other is Scrabble). We opened the game and pulled out the box that you are supposed to role the dice into. We were puzzled because inside that box was a baby blue burp rag. But why? We looked at each other and in an instant we both knew - we had played this game before at night - the burp rag was to muffle the sounds of the dice hitting the box so as not to wake up Parker! After all, nothing can ruin a date night like a 10 month old. Oh how our lives have changed. Evidence is everywhere.

I am pretty sure Parker rules our house.

on matters of discipline

Since last week when Parker started this new "independance phase", Jon and I have been having a difference of opinion about how to discipline him. Jon is ready to ground him and I am ready to have a family conference to discuss his inconsiderate behavior. Ok, so that is extreme on both sides. But tonight as we were watching Home Improvement, (there was a time when we had a life) a conversation unfolded that accurately depicted our views on disciplining a child. Home Improvement was about Randy and Brad trying to raise money for a Children's Hospital and they decided to steal some of it to buy toys and Christmas presents. Here is our comentary:

Me: "Oh if Parker pulled something like that I'd be so mad!"
Jon: "What would you do?"
Me: "I went make him serve dinner at a homeless shelter on Christmas Eve. What would you do?"
Jon: (seriously) "I would make him go to a homeless shelter...to live"


I can't work with this!

Want to help?

I am a member of a small group called Mended Little Hearts. We meet once a month on Wednesday night and we are all families with heart babies. We have nine and ten year olds who have been through multiple surgeries already and then we have pregnant moms just beginning down this road. My reason for this is post is this, we are having a party! February is National Congenital Heart Defect Awareness month and we are celebrating by doing something big to get the word out about these amazing kids. We want to give the kids who have been through way too much a really fun night out and we also want to draw attention to ourselves and let people in the community see that there is a problem, but there is also something to be done.

Jon came home from school last night and was telling me about a video he had to watch in his low vision class that was supposed to teach them as future doctors how to be sensitive to families who have blind, or otherwise "imperfect" children. He was absolutely disgusted and said it did not even begin to capture what it is like to hear your child is sick. He is even writing a letter!! My point is this, I can not tell you enough how alone you feel when you find out your child has an illness that you did not see coming.

Mended Little Hearts, and these women in my group in particular, want to help new families who are just finding out. They want to help researchers have the funds to begin to do studies that could improve mortatlity rates that are still too high. They want to support older kids who have been living in bodies that just are not working - that keep them from playing football at recess, or running with their friends. This party is to get as many families in one room as possible so that we can all hear how we can help right now.

When you are in a situation that takes away all of your control, finding out that you can do SOMETHING, like arranging decorations for this party,is amazing. FINALLY, something to do. Some way to help!

Soooo, I am in charge of decorations for this party. A good friend of mine, Sheaghlah is helping me and together we are calling around, writing letters and asking for donations of things like, paper, flowers, poster board, markers, scissors, balloons, letters, stencils, tissue paper, anything we can use to create a heart themed party for 150!

Why do you care? You may be asking. Well, if you are wanting to help these families out, here is a great chance! We are going to write a letter and if you want to take it to your local florist, party city, or grocery store, that would be awesome! If they give you something, send it to me! I'll pay the shipping! If you want to donate money (because aside from decorations, we are having food, a dj, a clown, a magician, raffle prizes, putting together care packages for families in the hospital now, and goodie bags for the kids) let me know! I can tell you how to get it to the group! We are hoping to get everything done for the party through donations, but extra money will help us be able to do some great things if we are offered discounts!

Please email me or call me or respond here if you are interested!
Emily_Hebda@yahoo.com

Here is the website for the national Mended Little Heart organization:

mendedlittlehearts.org

The grass is always greener

You know that saying the grass is always greener on the other side of the fence? Or you always want what you can't have and then when you have it, you don't want it anymore? Ok, I have a feeling the saying is more eloquent than that, but some people say something like that. Here is the thing. I came home tonight and told Jon that it was his turn to put Parker to bed. 50/50 that's what I say. So, here I am soaking up my free time while Jon puts him to bed...and all I can think about is going in and reading Goodnight Moon. The truth is, there is nothing else more important in the world than being in the room with that boy right now.

In a great green room there was a telephone
and a red balloon and a picture
of a cow jumping over the moon
and there were three little bears sitting on chairs...

see ya!

oh ps - the picture? a moose, trying to get grass...on the other side of the fence? get it? hahahaha (i'm proud of that one)

Elf Yourself!

I couldn't help myself....

copy and past the link:

http://www.elfyourself.com/?id=1141665354

Parker's morning

In trying to understand my son's newest behavior antics, I have tried putting myself in his shoes. I have recreated Parker's morning for you - from his point of view. Here we go:

"It's mom! I definately heard her open the closet door"

- stands up -

"Mom, come get me! Mom, come here! Mom, I'm up! Where are you going? Come get me first WAAAAAAAAAHHHHH"

- starts to cry like leaving him in his crib is something I do routinely -

"Oh good! You're back! Hi! Your hair looks fantastic! I need to pull it! No? Ok, well let me stick my finger in your mouth and check out how your teeth are doing. No? What's your idea for something to do? Nooo I don't waaaaannnaa change my diaper!"

"Let me have that destin cream. And I want some wipes, give me the wipes. Look! I found the nail clippers you were looking for last night! Give that back I was playing with it! Ok I'm done doing this. Let's get up and play. Let me stand up!!! Move your hands and let me get up! I don't want to wear those pants. And I don't want to wear that shirt. I would like to eat these shoes though, these are great! Give them back!"

- Moves out to the living room to get our coats. Jon, unfortunately for him, is in bed and trying to sleep still -

"DAD! Mom, it's Dad! Hi Dad! Look, see how close I am to your face! Where do these two holes in your nose go to, let feel in there for just a sec... no? Ok, Well, I'm just going to climb over here and LOOK! IT'S THE LAP TOP!!!!!!!!! This is terrific because I have been trying to get my hands on that for weeks now and here it is! Right in front of me - NOOOO I was playing with that! You've got to be kidding me!! I dont wwwwwwwwaaaaaaaaaannnnnnnaaaaaaa put my coat on!!! Bye Dad!"

- at work -

"Look! It's that dog Red Fred! Come here Red Fred, let me take a look in your ears for a minute! Man, I just love this dog! Mom! Look how his hair just comes out when I pull it! No? Ok, hey hey hey, it's the remote! Let me just push this button here and HOT DOG! Look at these channels changing now! No? Well, I see that you have left the cable box uncovered so you know I'm just going to go over there and push those buttons. What? Am I not supposed to be playing with this?"

"Stephan is up! Let me just turn my back so mom can't see me do THIS! HA HA HA This cracks me up! What a baby, a little tug on the hair and he crumbles. No? What? What are you doing? No, don't hold me down. OH MY GOSH I'LL NEVER MOVE AGAIN!! HEART PALPATATIONS MOM!! I CAN FEEL MY HEART BEAT! I'M PANICING NOW. I CAN'T MOVE! Whew! Ok that was scary. Where did Stephan go? Double or nothin' he cries again!"

"Breakfast time! Oh I love waffles. But this piece can go on the floor. Not this one. This one can. Not this one. This one. Oh this one can go in Stephan's hair and while I'm there you know I have to pull it again. Ha ha ha. This is great! No?"

"I'm getting tired. Mom, I'm getting tired. Hello??? Well what if I scream and roll around on the floor for a bit. Now do you see that I am tired!? Wait, oh yeah, I need to go to the bathroom first. Oh and my teeth hurt so I would love some of that stuff that makes me not feel my face. Great! Thanks. Well done. Ok - to bed!! Whew, I'm beat. "

It's hard raising a kid with a free will

Back in the day - well back a week ago - Parker and I worked together like clockwork! I read the books and made educated decisions on what he should eat, when he should sleep, what he should play with and how best to mold his behavior and so he ate what I put in front of him, he slept when I laid him down and he was playful and naturally curious with just enough physical limitations to keep him safe. "This is easy" I have been saying to myself for the past 10 months. I was arrogant. "How do people mess this up?" I thought to myself - proud of the angelic child we were raising. Would you believe that I have even put away my parenting books. Oh - I was THAT sure of myself.

With my head hung in shame I am writing to admit, sincerely, I was wrong.

Last night, after two hours of fighting with him to sleep, I brought out a book that teaches parents how to help their baby develop into a "delightful two year old". It talks mostly about behavior issues, specific ways to play with a baby, the correct ammount of attention...you get the idea. I don't know what I am doing, I figure a delightful two year old seems like a good goal and so I read what this guy says! Anyway, APPARENTLY 8 months to 14 months is "make it or break it" time according to this guy. CAN YOU IMAGINE IF I HAD NOT OPENED THIS BOOK? I wouldn't have known! He says that every action and reaction Jon and I make as parents for the next 4 months will make him an angel or demon! PRESSURE folks - lots of pressure. Oh I was sweating! Jon was laughing at me in the corner of the room as I read off the behaviors we need to "nip in the bud" right now. (How, Emily, do you "nip" behaviors in a 10 month old? Good question, you hold him down so he can't move for 10 seconds after an offense such as pulling hair or biting. Babies "value the ability to move" he says.)
Apparently Parker has a "free will" just like me. He has figured out that he does not have to do what I want him to do. It is fun, I guess, to throw his food on the floor - yes even food he likes - pull hair, tackle people, throw temper tantrums and bang his face on the floor so I have to pick him up, protest sleeping, putting his socks, pants, coats, even diapers on, and he newest "game" is scrunching his head down to his chest so hard that he can't breathe and he turns red. Where did this come from?! And so we argue.

Where I once spent my day surrounding him with phrases like "come sit in my lap sweet heart" and "you are such a good eater love" now it's "Parker don't pull his hair" "Parker stop screaming" "Parker don't unplug that" "Parker you are going to hurt yourself" "Parker I'm taking this away from you" "No Parker" "You can't do that either Parker".

Whew - I get tired just writing it! I was venting to my mom about it this morning - she cracking up inside, I heard it - and she told me "this won't last forever, it's just a phase". The thing is, I think she was lying to me. I have this eerie feeling that this is just getting started. She knows it alright. Maybe she is scared I will sell him to the gypsies before Christmas and he won't be there? But I know she knows something!

Here is the crazy thing. I am tired. I look awful. I feel guilty for the being the "no" police all day long. I look forward to my hour at the end of the day when he is asleep and I can talk and sound like something other than an auctioneer. BUT last night, when he did finally go to sleep, Jon called me into his room to look at him because he was sleeping in "such a cute little ball" and we stood there for a few minutes discussing how cute he is and (and this is the crazy part) in the back of my mind, or maybe deep in my heart, I heard a voice say "Let's wake him up and play some more!" I LOVE this kid. Truly, love is not strong enough. The best part of my day is still waking him up in the morning and seeing his smile and his messy hair and crusty little face. And I know I get to do it all over again today.

Mystery solved

The mystery of Parker's sleeping craziness is solved! We took him to the doctor this morning and he has a bad cold and ... get ready for this...4 dang teeth coming in!! He had two come in last week - and now he has 4 more! POOR kid!
Now that we have figured that out I have given him orajel to numb his little gums and he has been back to his old self! He has even gone to sleep twice today without a fight!! WOOHOO!
If only babies could TALK or point or somehow indicate blinding pain in their mouths so that desperate mama's and daddy's could DO something about it besides rock for hours saying "PLEASE JUST FALL ASLEEP". Because THAT doesn't work.

Mama Guilt

We have the catheter behind us! Woohoo!!! We feel like it was good news even though the balloon did not work. We are just thrilled that we do NOT have a surgery date!! Our families have all gone home and we are getting back to our regular life after all of the "excitement" of last week.
Since the procedure, Parker has been screaming for an hour or longer any time he has to go to sleep. We used to be able to just lay him down and walk out of the room and he would fall asleep within 10 minutes or so. Well, the last two days have been a bedtime nightmare around here. He totally skipped his nap yesterday because we were at Jon's grandfather's house and we decided to spare the house the drama. We figured when we came home he would crash. wrong. He was up until 9!!! Then he woke up at 2:30 and did not go back to sleep until 4!!!! And he is not just in there whinning the "I'm tired and I can't get comfortable" cry. It's a new "I'm shreeeeeakkkking and you don't know why! You can just let me lie here alone if you want to, but keep in mind that I have multiple heart defects, possible teeth coming in and oh yeah, you did just hand me over to a man who stuck a tube up my leg and into my HEART but not before you held me down while they took my blood..but sure you just let me scream in here by myself. I'm probably fine" howel that we can not ignore. Needless to say - we are exhausted this morning.
It's a good thing I've found coffee! Poor Jon.

ps - the photo is Parker about 5 minutes after his versed shot (nice and relaxed)

Remember when...

Research

There is an organization called Saving Little Hearts that is dedicated to congenital heart defects and I invite you to go to their website: savinglittlehearts.com and snoop around. It is an amazing resource center! There is something in particular I wanted to tell you about!

As I mentioned in a previous post, there is not much happening to improve prenatal and post partum screening in newborns to help these babies. One of the tests that would be noninvasive, quick and cheap to do is pulse oximetry screening. All a nurse would do is wrap a little wire around the toe of a newborn baby and in a instant, she would know exactly how much oxygen the baby is getting. For cyanotic babies, oxygen levels are not 100. Parker Jay scored an 8 on his apgar scores, he was not blue, he did not look like he had a heart defect right after birth. When they put on the pulse ox, it was 80. Something was clearly wrong. We already knew of course, but what if we hadnt - would they have sent us home?

In Tennessee, the "Tennessee Task Force on Screening Newborn Infants for Critical Congenital Heart Defects met and reviewed what was known on this topic and they estimated the incidence of critical congenital heart disease is 170 in 100,000 live births, and of those, 60 infants have the potential for shock or death if the diagnosis is missed. They also found that the diagnosis is missed in 9 infants by fetal ultrasound assessment and discharge examination. These babies might have been diagnosed by a screening program. Getting the right diagnosis in these infants before discharge could spare many of them death or neurologic problems." A bill was passed on June 11, 2007 to allow further study and as of Oct. 2007, several hospitals in Tennessee are testing every baby before they are discharged, a few that have the equipent to test every baby in place, and also hospitals waiting for doctors to come by and set up the program. That is FANTASTIC!

On the Saving Little Hearts website is a link under "News" called "Expanding Newborn Screening Appeal" and there is a format for a letter to send to The American Board of Pediatrics and the American Academy of Pediatrics. The addresses are right on the page. All you have to do is print it off, and stick it in the mail! I think there is an electronic page as well.

I LOVE when there is something to do in a situation when I feel like I have no control! I feel like the best thing I can do for Parker is to make sure he has the best doctors and the best care possible. I am now finding out that there are things I can do to support research so that the doctors have the information they need to do their best!

Gotta love kids!

Ok, this might be the funniest thing I have read in a LONG time. These are questions about moms answered by 2nd graders!


Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my Mom just the same like he made me. He just used bigger parts.

What ingredients are mothers made of ?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you your mother and not some other mom?
1. We're related.
2. God knew she likes me a lot more than other people's moms like me.

What kind of little girl was your mom?
1. My Mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my Mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that Mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss , but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess Mom is, but only because she has a lot more to do than dad.


What's the difference between moms & dads?
1. Moms work at work and work at home and dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller & stronger, but moms have all the real power cause that's who you got to ask if you want to sleep over at your friend's.
4. Moms have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my mom smarter. Then she would know it was my sister who did it and not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

Because hearts are important too

Research has shown that Congentital Heart Defects are the number one birth defect in our country and it has also shown that research on congenital hearts is unbelievably underfunded.



Early detection gives parents the chance to have their baby at the right hospital surrounded by the right doctors and that can make all the difference in the world. I remember during my pregnancy how many times I was offered a procedure that would test for a chromosomal defect and really, heart defects are much much more common than chromosomal abnormalities. As of January 2007 the American College of Obstetrician and Gynecologists will recomend prenatal screening for down sydrome for every woman regardless of age. Unfortunately, similiar procedures in relation to heart defects are still not available.

Here are some other facts about Congenital Heart Defects that I found amazing. This can be found on It's My Heart's website.

* Congenital Heart Defects are the #1 birth defect.
Source: March of Dimes

* Congenital Heart Defects are the #1 cause of birth defect related deaths.
Source: March of Dimes

* About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)
Source: Children's Heart Foundation

* Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers COMBINED, yet funding for pediatric cancer research is five times higher than funding for CHD.
Source: Children's Heart Foundation.

* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.
Source: Children’s Heart Foundation.

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.
Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year.
Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

4-8 percent born with CHD have Hypoplastic Left Heart Syndrome.
4-10 percent born with CHD have Atrioventricular Septal Defects.
8-11 percent born with CHD have Coarctation of the Aorta.
9-14 percent born with CHD have Tetralogy of Fallot.
10-11 percent born with CHD have Transposition of the Great Arteries. (PARKER)
14-16 percent born with CHD have Ventricular Septal Defects. (PARKER)

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.
Source: March of Dimes

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.
Source: March of Dimes

Pediatric Cardiothoracic Surgery has improved drastically in the last fifty years. The strides they have made and the diseases they can now fix are truly amazing. 30 years ago babies born with TGA would have died in a matter of days. It is awesome that there is still more room to improve things in this "heart world". I think it is really important to raise awareness of CHDs. I know that when I found out about Parker's heart I had never heard of anyone who had a heart defect. I don't think I had ever considered that babies had heart problems. Anyways, it all starts with education and I am hoping that by putting Parker's story out here I can help to bring awareness to congenital heart defects and maybe if there is enough talk by enough people then there can be some changes in prenatal and post partum testing in every infant. No family should have to hear "We don't know what else to do".

Halloween 1957

Happy Halloween!
I found some Halloween - Heart trivia for you! Because I can relate anything to the heart! I found this article from a friend of mine, a fellow TGA Mama, and wanted to pass on the information! This is how the portable pacemaker came about!

A little backround on what was going on in Cardiac Surgery World: they had just started using pacemakers to help kids recover from open heart surgery. They plugged into the wall socket and were pretty big.


Well - on Halloween night in 1957 there was a HUGE blackout affecting most of Minnesota and the western part of Wisconsin. There was no power for 3 hours. "For most, the blackout was just an inconvenience. But for a few young heart patients connected to pacemakers it was life threatening". Jack Norton, a historian, found a newpaper article that described what went on in the hospital during that blackout.

"They had police officers pull up to the side of the surgery suites and simply turn on their headlights to provide light for the surgeons. They scrambled to try to keep blood cold by grabbing ice from various coolers to stick in the blood refrigerator. Doctors scrambled to find drugs to keep their patients hearts pumping" he recalls.

Not one child survived.



The trauma of that event rattled pioneering heart surgery C Walter Lillehei. The next day in the hospital hallway he flagged down Early Bakken, an electrical engineer who was working with hospital surgeons on new medical devices - working OUT OF HIS GARAGE. The two agreed that there needed to be a way to back up the pacemakers when there was a power failure. The children would have survived the three hours had the pacemakers worked.

Lillehei asked Bakken if he knew how to make a pacemaker than ran on a battery. After some tweaking they came up with a device that was about the size of a paperback book and fit in the patients bed. Bakken tested it out on a lab dog and saw that it worked. He said "Ok now, this seems to work so I'll go back to my garage and make a pacemaker for humans".

But he never got the chance! When Bakken went to work the next day, he saw Lilliehei using it in the recovery room of a CHILD. Bakken was not convinced that it was ready for human use yet and questioned Lillehei about why he didn't wait for the "people version" of the pacemaker.

Lillehei says "As long as this battery operated pacemaker is avaiable, I'm not going to risk using another child to a power failure".

Can you imagine if that happened now?! It wouldn't! Too many politics and law suits! Too bad - I wonder how much creativity is being shut down because of red tape!

On security

You know those poor couples you see going through security at the airport? The ones who can't get it together? The ones who have more bags than people and further more they have weird, sticky things in their bags that do not belong in airports. The ones who look so mad at each other you are about to do them a favor and call in the divorce lawyers? You know - the ones with kids? We were that couple in the airport!

I was carrying Parker on my hip (who, by the way, was arching his back and wiggling to get out of my grip), a huge and heavy backpack with all of his "traveling necessities", our jackets and I am trying to take off my shoes and take out the DVD player in my backpack. The security lady, with no mercy, says "you need to take off the baby's shoes Miss". Right.

Jon and I are bumping into each other and I hear him sighing in frustration behind me. We are trying to stick together and we are both furious at the other person for not helping. I turn around and snap, "a little help?" but I realize he is carrying his own backpack, another backpack with the camera and video camera, our lap top bag and the freaking car seat! He shrugs his shoulders in a "what would you like for me to do about it?" way. I can feel our fellow airport security peers eyes burning into my back. If you look into their eyes you will see that it is a look of pure pitty. They are screaming in their minds "people like that should not be allowed to leave home". Oh I heard it.

I can't speak for Jon on how stressful this was to him, but he was literally sweating once we made it through. No lie, we were out of breath!

My reason for this post is to ask you this, please, be kind to these couples. You don't actually have to help if you don't want to - although how hard is it to push one of those bins down so a poor woman with her baby and 5 million things does not have to bend down to get it herself - but please, don't stare. Don't roll your eyes. Don't sigh loud enough for the whole airport to hear you. Seriously don't laugh. For one thing - it is not nice but for another - you might sitting in front of them on the plane and the mom has the ability to stop the child from kicking the back of your chair - or not.

The Great Sunday Change

Tomorrow is another church day...
This used to not be a stressful event for us - in fact - this used to be a time of reflection, rejuvination, and centering. Now that we have a 9 month old, church has become anything but! For the last few months Jon and I have split the duties. Jon held him in the beginning during the readings and homily so I could focus and then I would hold him during prepartions for and during communion so Jon can focus. Now it just doesn't matter anymore.
When we walk into church in the morning Parker always so looks so angelic. I carry him in proudly, bragging in my mind about how sweet he is and about how lucky I am to have such an adorable and well behaved baby. People wave at him and he smiles and laughs in return. Then something happens. We sit down, the organ starts, we sing happily, and then just as we all sit down and a prayerful quiet comes over the church - something happens to my son. I bow my head to pray and I hear the click click of his thrown pacifier hit the ground 3 pews in front of us. "BA BA MA MA DA DA DA DA!!" he screams ecstaticly with the freedom of not having anything in his mouth. "Get the other one out of the bag" Jon snaps out of desperation to get him quiet as the looks from our fellow worshipers fall on us. "I didn't put one in there, you said you were going to get it - it's in his crib" I whisper LOUDLY pulling everything out of the bag even though I know it's pointless. "LA LA LA LA LA LA LA BA BA BA BA" He continues - even the priest looks at us. "No you were going to-" "Does it matter?" I walk three pews up, get down on my knees to retrieve the missing pacifier. Hurrying back, I pop it back in his mouth to shut him up. Quiet. Sigh. "click click click". and its gone again. "BA BA BA BA BA BA BA BA LA LA LA LA LA LA".

Ok so we go to the nursery. No one is working but there is another mom in there with her son, Ethan, who is about Parker's age. They play quietly together and his mom and I isten to mass going on through the speakers. Then Matthew and his dad come. Matthew is a huge 1 year old and he is a bully. After 3 minutes of "Matthew stop hitting, Matthew don't take that. Matthew don't pull his hair. Matthew don't sit on him. Matthew Matthew Matthew...." it is time to leave.

Back in the pews it's time for communion. All is quiet, respectful, and reverent. Well excet for our pew. Parker is kicking the seat in front of us. This is new so Jon and I are looking around like everyone else trying to figure out what the thumping noise is before we realize it's OUR child. He is writhing in my arms trying to break free, kicking his feet violently as I walk up to take communion all the while singing along with our Holy Holy Holy "LA LA LA LA LA" louder than the organ is playing.

Jon takes him to the back of the church because clearly we are moving past being a distraction. I can hear him all the way from the back "MA MA MA MA MA MA MA MA MA" getting louder and louder. And it's time to go. i grab our stuff and hurry towards the back signaling Jon with my hands to get outside "go go go go go"!

And wouldn't you know he sleeps all the way home?

I don't know how it happens or why. I just know that the sweet and innocent looking angel we bring into church is not the same bewitched banshi we rush out with an hour later! And I also know we are doing it all over again tomorow.

Figuring it out

In my struggle to find peace with everything that is happening I started to read Romans. I remember in one of my religion classes called "Life and the Letters of Paul" that Romans was refered to as the "faith" book and I am finding that to be true. Here is the message I am getting from all directions: my readings in Romans, the homily/sermon this morning/my devotion book: Calm My Anxious Heart

Be content in every situation "I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want"

When I think of the word "content" I don't think of exubrant, jumping for joy, thrilled, ecstatic - I think of at a calm peace. A place of not challenging or fighting the situation, but accepting it.

I have been meditating on the imagine of Jesus in the garden the night he was arrested. He ASKED God to "take this cup from me". He was not eager to endure what God was asking of him. He told God that he did not want to do it - BUT (and this is what contement is) he said "but not my will but yours be done". And he accepted it. Jesus knew something I have just not been willing confront - not since one year ago when I found out about Parker's heart.

I read this little story tonight and wanted to share it here because it has changed the way I am thinking about God and my life as the mom of a baby with a heart defect. I needed this tonight.

"I need oil" said an ancient monk, so he planted an olive tree. "Lord, it needs rain that its tender roots may drink and swell. Send gentle showers" And the Lord sent gentle showers. "Lord," prayed the monk " my tree needs sun. Send sun, I pray Thee". And the sun shone through the dripping clouds. "Now frost, my Lod, to brace its tissues" cried the monk. And behold, the little tree stood sparkling with frostm but that evening, it died.
The monk sought the cell of a brother monk, and told his strange experience. "I, too, planted a little tree" the other monk said "and see! It thrives well. BECAUSE I ENTRUST MY TREE TO ITS GOD. HE WHO MADE IT KNOWS BETTER WHAT IT NEEDS THAN A MAN LIKE ME. I LAID NO CONDITION. I FIXED NOT WAYS OR MEANS. 'LORD SEND WHAT IT NEEDS' I PRAYED 'STORM OR SUNSHINE, WIND, RAIN OR FROST. THOU HAST MADE IT AND THOU DOST KNOW'

I don't know how to entrust Parker to God. I don't know how to give up control on this because I dont know what will happen. I don't know so many things but I do know this - if I am to find peace, contentment, acceptance - if I am to learn how to trust God in the bad times - then I have to trust that God will lead me to contentment. I know this is the right thing to do. I know it is time to stop being angry and start being thankful for the amazing gifts that I have and that Parker has - a strong body, a willful spirit, brilliant doctors with phenomenal technology, the list goes on and on. It is time to give up and let God run this show because He made Parker's body just the way it is and He knows what it needs. I like the greek translation of Philippians 4:13 " I am able to face anything by the one who makes me ABLE to do it"

If you are still reading this far into this, I realize this is a very personal part of my life to be making public. I learned when I was studying English that the only way we can immortalize something is to write it down. It's like the Pharoh said in that old 10 Commandments movie: So let it be written - so let it be done!

A big ole THANK YOU!

I have been really struggling with God about all of this for a long time. I was at a great place with it before this new news. Anyway - to make this a short entry - THANK YOU to everyone who has posted, or called, or emailed me any Bible verses that help you out in hard times. I really appreciate them and am reading them.
If you are looking for Parker updates, go to our carepage.

Go to carepages.com
sign up
and visit our page - the name is ParkerJay

Let me know if you have problems getting there.

Speaking of Holland...

Well for those who do not have our carepage information or do not have the details about Parker's heart - here is the quick catch up:

Parker was born with Transposition of the Great Arteries (his pulmonary artery and aorta were switched leaving him with two separate circuits - one side of his heart was receiving blood from the lungs and sending it back to the lungs and the other side was receving blood from the body and seding it back to the body - so he was sending unoxygenated blood to his body)
He had the Arterial Switch Operation when he was 3 days old to switch the arteries. He was home 15 days later.
Here is the new stuff:

At his last echo (in Feb) they found mild pulmonary stenosis (that is, narrowing in his pulmonary artery). At todays echo, they found that it is now severe. A normal gradient for that artery is 40 and his is 70. What that means for his heart is that the right side of his heart is working very hard to squeeze blood through that narrowing to get blood to the lungs. The pressure in the right side of the heart should be around 20. His is 80. That means the left side of his heart is working to push blood to his lungs as hard as the right side is working to push blood to the whole body.
In the echo, it looked like the stenosis was at the valve. If that is the case, he can have a catheter procedure where they would go through the leg into the artery and inflate a balloon to widen the artery.
If the stenosis is higher up, they may have to put in a stent (which would have to replace throughout his life as they do not grow)which will hold the artery open. They can also do this in the lab, but it is riskier and is not fixing the problem.
Worst case, and I'm not sure what would require this, is another open heart surgery.

Needless to say - I am pretty shaken up. I'm frustrated all over the place because I'm not sure how his heart could be functioning like this and I not know it. I feel like I have the responsibility to know that stuff. He's not tired, he's not sweaty, he's not blue or swollen. He's crawling all over the place, taking toys, giving kisses, demanding food, he's a big nutty nut. I always knew this was a possibility so I can't say that I'm shocked like I was the last time - but, as a friend of mine who has gone through this same thing put it, I feel derailed. I felt like we were on the "healthy" tracks because he was doing so well and actually we are not. We are on the "out of my control again" tracks and I hate that place.

I have spoken with a good friend who went through this same thing wtih her son when he was Parker's age and received some wonderful advice about things that I can be in control of: what information I let into my head, what doctor I am working with, and how I view the problem. I am trying VERY hard to have faith that this is ok and to come to terms with the fact that this is our life.
I was starting to get the feeling that when they said Parker's heart was "fixed" they meant that it was perfect. And that's not what they said. Parker's TGA is fixed, compeltely, and that is amazing - but in doing that, little problems will inevitably come up for him. It is not perfect. And that's ok. This is not the end of the world. This is not the worst thing we have been through.
I think the problem is not that I am worried, although I am, but it is the knowledge that there will always be something to worry about. All I have to do is get on board with that, and try to worry peacefully and not let it get in the way of the days that ARE perfect. I can worry when I need to and praise God when I don't.

On Holland

A good friend of mine, Melissa, is heading to Michigan tomorrow for her daughter's 3rd and hopefully final open heart surgery. Melissa emailed me shortly after I found out about Parker's diagnosis. We are members of an online support group for mothers with heart babies. Anyway, Melissa told me a lot about what to expect and she even sent pictures of her daughter after surgery so I wouldn't be so upset when I saw Parker. Today as she gets ready for this next surgery she posted this article, Welcome to Holland, and said that she felt that it really expressed what life is like having a child with a disability.
While I do not consider Parker to have a disability, because he was fixed, we are less than a week away from our next cardiologist appointment. All of those familiar fears come back again and I have to come face to face one more time the knowledge that our lives could change next week and if it doesn't then I can rejoice again because God heals and Dr. Mavroudis is a genius. Anyway, I wanted to share this article because I do understand what it is like to land in Holland:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Way to go Parker!!

Just had to say that Parker did GREAT today. 3 hours after waking up he was crawling!!! (He is a nutty nut!!!) He is even trying to pull up on the kitchen chairs (Lord, help us all!).
I did not like being back at the hospital one bit....and that is all I'm going to say about that.

A year ago today...

Jon and I are sitting here enjoying a pleasant evening, watching the Republican debate. He just asked me if I knew what we were doing a year ago today and do you know what the answer is? I'll tell you - we had just come home from our 20 week ultrasound. We found out a year ago today that Parker is a boy. We also left the ultrasound incomplete because the nurse said, "We can't see all of the views in his heart so we need you to come back in two weeks". We had no idea how our lives would change. We had no idea how strong we are and we had no idea how much love we had to give. I did not know what transposition of the great arteries was. I had never ever heard of it. Down Syndrome had crossed my mind, cleft palate had crossed my mind - but not a heart defect. How much has changed.
Even a year later we are still reminded of the day we were blindsighted. We are reminded every day that Parker survived what he has survived.
Tomorrow he is being circumcised, something he would have done 7 months ago were it not for his heart. Reminder. We are taking him back to the hospital at 9:30 and handing him back over to more doctors, trusting that Parker means as much to them as he does to me. It is a simple operation. He will be asleep for 40 minutes or so. I am still a wreck though. We are going to be sitting in the same waiting room that we waited in the day of his surgery.
He started crawling this weekend. Miracle. I remember, a year ago (minus two weeks), thinking he would not come home with us. Now he is busy pulling books of my bookshelf, throwing temper tantrums because he can't play with the remote control, climbing out of my lap to get a toy - I just can not get over what a miracle he is. Everything he does. Because he didn't have to be here. He was never garanteed to me.
A year ago today - I did not have love strong enough to feel the gratitude that I have today. A year ago today - he was my baby that I wanted. Today he is a miracle that I always needed.

frogs in water

I read on the news this morning about a controversial new video game called Man Hunt received a new rating called Adults Only because of the violence. Apparently in the game you are a scientist who has escaped from an insane asylum and is now hunting down people and entertaining his sickest fantasies. You, as the scientist get to design and carry out the fantasies.
Charming.
All I can say is - remember Mario Brothers? Mario? Luigi? The bad guys were flowers and mushrooms. Let's go back to that.

You know? I heard a speaker once say on the matter of violence today that what has happen is like a frog in boiling water. If you put a frog into boiling water it will actually jump out. But if you put a frog in warm water and turn up the heat slowly - it will quite happily boil to death. I think that is what has happened over the last 20 years. We have sat by and happily watched while things like ManHunt became entertainment.

Parker wins again!

Apologies to my always loyal readers :-) We were doing the family vacation thing in Dallas last week (a MUCH needed fun and relaxing week) and this week I have been without internet during the day (I can't for the life of me figure out what people did without it!).
Tonight is Jon's late night so I came home for a leisurely evening of girly tv shows and finishing my book. After sitting here for 15 minutes I realized our apartment was filthy so Parker and I cleaned in between his dinner and bath (and actually my dinner and bath come to think of it!) Here is my latest "mom" story.
Parker is scared to death of the vaccum clearner. Tonight was not his night as our carpet was in desperate need of suction. I usually start by the front door and work my way through the living room - leaving our bedroom for last. As far as Parker is concerned the worst part is when I disappear into the bedroom (surely sucked up by the vaccum cleaner never to be seen again) so tonight I decided to start in the bedroom and then be funny and dance around during the last part to try to cheer him up.
I turned on the vaccum cleaner (he knew I had it - he saw me go in with it) and could hear Parker's shrills from the living room. "It's ok! I love you and I'm coming out in a second". I yelled over the noise. I thought about how this was a teaching experience. I could not pick him up every I vaccumed. He would soon learn that this was not a scary thing. I am the boss! I am the teacher!
30 seconds later I walked into the living room and saw poor Parker sitting in his high chair with tears just streaming down his face. "He....will...learn" I tried to convince myself. But then I thought even more convincingly....Who am I kidding?! Parker is the boss! Parker is the teacher! And I ran and picked him up and carried him the rest of the time I vaccumed.

PARKER: 1
MOM: 0

ok ok

PARKER 1,596
MOM: 0

A Reflection on the last 2 years:




There was a BEAUTIFUL wedding that was better than anything I could have ever dreamed up!
There was an amazing honeymoon in San Antonio! Mexican food every night! Sea World!
We moved to Chicago! Jon started school and I went to work!
We worked and studied - worked and studied - worked and studied!
We went on dates! We saw the city! We went to great restaurants! Shopped on Michigan Avenue! We laughed all the time!
We fought about what kind of cheese to buy. About what to watch on TV and who was going to clean the kitchen after dinner.
We made up and laughed some more!
We paid bills. We paid bills. We paid bills.
SURPRISE! We were pregnant!
We were scared and happy. Jon threw up more than I did.
We got a crib and some baby clothes and laughed at what we had gotten ourselves into!
We found out our baby was a HE and he was going to be very sick.
We cried
and cried
and cried
We hugged and hugged and hugged and were terrified.
For the first time - Jon could not make it better.
But we had strength. lots and lots of strength.
We even laughed sometimes.
Then...Parker was here!

HE

WAS

BEAUTIFUL

and perfect. And we fell in love again.
There were hospitals and doctors and surgeries
and family
We learned we need our families
We were sad but we were ok.
Parker was stronger than all of us and we came home!
And then there were 3!
We laughed. We tried. We messed up and we did a good job.
Now Parker laughs with us and we all have a good time.
We don't go to movies. We don't go to restuarants or shopping on Michigan Avenue.
But we don't mind.
We have loved each other through 2 years. We are strong and we are happy.
We have learned that we KNOW HOW TO BE HAPPY when things don't go our way.
We have learned that we are not the boss and we go with the flow.
We are just happy to be going together.

I am going to talk about sex....sooooo...if you are my dad or are uncomfortable with the knowledge that I know what sex is - then please stop here.

I was listening to the radio this morning and they were having a conversation about taking the love out of sex. They say this would solve everyone's problems because men don't want it there anyway and women would have time for sex because it would be less time consuming (how romantic). What does that mean exactly? I can't be the only person who is not sure what the radio host was suggesting. Take the love out of sex? So ... we should have sex with anyone...anything? We should put it on our "To Do" list and hope to meet someone cute at some point during the day?
Is this really the attidue a majority of people have?

4 people who called in have had sex with more than 30 people!!! 30!! I'm not trying to be rude but that makes me rethink shaking hands with people I don't know.

Now - I know not many people save sex for marriage anymore (which is sad in itself because they are missing out on something great) and I'm not talking about people having sex in a relationship with someone...I'm talking about this class of people - apparently a large class that is having sex with random people they have no feelings for at all. I guess I was under the impression that people were having sex because they love someone - or at least think they do. This idea of making all sex casual and "taking the love out" is unbelieably demeaning to me. I feel absolutely like an object when I hear peopole talking like that. Have women worked this hard for this many years to be able to vote, go to work, speak up, sit on the couch with a glass of wine while their husband does the dishes - to now being a man's private beck and call girl? No feelings. No sharing. No attatchment. But satisfaction garunteed.

Do you know what the worst part of it all is? Because at the end the day I have made my choices and I have my morals in place. I can hear this garbage all day long and I know that it is wrong. BUT the worst part is - these adults who are "taking the love out of sex" - who are having sex with 5, 10, 20, 1000 people...are going to teach their children that this is what sex is. And their children - who will not know anything different - are going to be sitting right next to Parker in school.

It's happening...

I did it.

I was in the elevator with Parker this morning on my way to work. The door was about to open when I realized he had milk crusted around his mouth. Do you know what I did?

I licked my thumb and rubbed it off.

I walked out and stopped dead in my tracks...

What has happened that it is now acceptable for me to LICK my thumb and TOUCH someone's face?!

The forces of Motherhood are stronger than I was aware of.

How things change...

So I had all the boys at the park today with a good friend of mine, Meggan and her daughter, Margret. We had just come from lunch and bought some popsicles that we were happily eating. We were the only people there except for 3 boys - maybe around 9 years old. They were playing Hide and Seek around the equipment and trees. Meggan and I were talking about playing outside when we were younger and what a blast that was. We were saying that we had thought times had changed and kids didn't play outside anymore. We were saying how refreshing it was to be proven wrong and that times had not change at all!
Then...I heard something...a cell phone...but who? Who would have a cell phone at the park?
Then I heard a 9 year old voice: "Where are you you punk?! This is stupid. Where is Chris? Oh! Thanks!" and off he runs and finds Chris!

9 YEAR OLDS PLAYING HIDE AND SEEK ON CELL PHONES!!!!

I am sad to report to you my friends - times have changed.

And now for a history lesson...

I have tried so hard to learn everything I can about the heart. I have read about every congential heart defect, I have read about all of the surgeries...I have done everything short of making flash cards for myself (which would be funny...like a matching game: Hypoplastic Left Heart Sydrome goes with The Fontan!) I have done all of this to no avail. I can't retain any of it to save my life! It is just easier to say it is all "magic". I keep reading though -
I am intrested in the history of cardiothorasic surgery today and was doing some research this morning. It is interesting that it all "took off" in the last 100 years or so. For obvious reasons - previous surgeons tools included things like scissors and tweezers and I have learned this: you can't be moving around aortas and cornary arteries with scissors!

What is even more interesting and therefore the subject of this blog entry is that these medical pioneers, these men (and a few women)who studied so hard and had such incredibly brilliant theories...were absolute and total CRAZIES.
Case in point? William Forssman!
This guy was the first person to perform a cardiac catheterization on a human being. No one would let him practice on a real living human being (naturally).
So who do you suppose he catheterized?
Are you ready for this?
He did it on HIMSELF!!!

...oh...my...gosh...



In 1929 he numbed up his elbow, inserted a canula into his OWN antecubital vein, pushed the catheter through it until he FELT it hit his right atrium. Then he marched himself over to an x-ray and took a nice picture of it to prove that it could be done.



Do you know what he got for this monumentous discovery? Some new friends in white jackets to take him away and lots of medicine! Everyone thought he was just nuts. He won eventually though. He was given the Nobel Prize in 1956!

So as "nutty" as he was and most of them were I am just so thankful for all of the crazy heart doctors. How far they have come! What would the world be like without the brilliant and crazy right? We would be short one little bald guy that can make even grown men babble that's for sure.

Parker's Bad Night

Once upon a time, Parker used to sleep all night. Once upon a time I woke up in the morning and felt like I had been asleep. Those days are over...
Well - after nights and nights of Parker waking up every 2 hours we finally made an educated decision to embark on the Ferber Sleep Method. In this method, you let the baby cry for 5 minutes before going in. When you go in you don't touch the baby - you just tell them that you are there. You leave again and wait 10 minutes. The same rules apply when you return. You leave for 15 minutes next...and so on all night until they finally "learn how to soothe themselves and drift off to sleep".

We have tried everything under the sun to get him to go back to sleep (we even tried letting him sleep in our bed...but he just pulled our hair and screamed.)We decided we could let him cry for before going in to get him. Our logic was maybe he was not all the way awake and would fall back asleep if we left him alone. Jon and I decided to sleep out in the living room so we did not hear him until he was actually crying. We were obviously prepared for a LONG night.

Right on cue at 1:00am we hear Parker start to cry. "Do you think is a good idea?" I asked Jon. "He is fine - he'll go back to sleep. Let's just watch the clock" Jon reassured me. "I wonder what is going through his head" I said.

"Ug - why am I awake?! This just ticks me off to no end! Where is that dang pacifier? It's hot in here isn't it? Yeah it is definately hot in here. When Mom comes she'll turn on the air. Where is Mom? She is usually here by now. Where is that stupid pacifier?! Ok - this is getting ridiculous - where is she?! Maybe I should scream louder? It is so hot! Do you know what I am starting to think? Maybe she is gone. Maybe I am never going to see her again. Maybe she just left. That's what happened. I am alone. I am all alone. I will never be able to trust or love again. My heart is sad and my soul is ruined...I will never be the same again.

Needless to say - we let Parker cry for exactly 25 seconds.
Richard Ferber, obviously, is man with a heart of stone!

Where is the line between being a nice person and being a human speed bump and why is it that human speed bumps never see it?

I read a few message boards on this website called BabyCenter.com. There is one message board for babies born in January 2007 and the other is Heart Babies. I find all kinds of information about normal baby development for Parker's "normal" side on the January '07 babies and I get to vent, ask questions, and find strength on the Heart Babes board. I have come to a realization though. Today I was spending some time on the Jan. board and I can't tell you how many women complain, whine, and bring up every negative thing about their baby. There was a thread called "what anti depressant are you on?". Several of them have gotten divorced since January. Several of them wish they did not have a baby. They bicker, argue and criticize each other in all kinds of rude ways. It is just awful.
The mom's of heart babies though - these women are unbelievable. Some of these women have children who have had 3 or more open heart surgeries, their babies have all kinds of mental delays, they have been in hospitals for months on end. For them a cold could be fatal, every cardiology apt has the potential to change their life, every year their child get older comes with more and more risks. These women are amazing. Tonight one woman posted "BIG MILESTONE" and she was bragging in tears because when she asked her 11 month old son (who just recovered from his second open heart surgery this year) to give her a kiss he planted a big wet one right on her lips! These moms don't complain about their baby who doesn't sleep through the night - at least they are together at home! They don't complain about dirty diapers - at least their childs systems are working! They don't complain about the cost of formula or clothes - what in the world could more important to spend your money on! Every day - every mundane, boring, dirty and exhausting activity is cherished like it might not be there tomorrow. Can you imagine how hard it must be to love someone that might be taken away from you? They are so strong.
No matter how well Parker does throughout his life and how far away I get from the "heart world" - I will always remember these women. The ones who have lost their babies. The ones who are still facing multiple surgeries. The ones who are lucky like me and will watch our babies turn 1 and 21 and 31!
I guess the point of this note is to say that when someone is told they might not be able to keep their baby - and they do - the world is never the same. All of a sudden - they have all they need. I have all I need.

Parker and I are enjoying a week off from our "Nanny" gig. Yesterday to I took him to the park. We were sitting in the grass playing with Parker's dinosaur and he kept looking at the kid on the swing. Parker laughed every time the little boy, Spencer, went up into the air. It was the first time in my life as a mother that Parker wanted to do something and I wasn't sure if I was ready.
I walked him over to the baby swing - the black rubber one with four holes in it. "There is no telling what kind of sick kids have been on this" I thought trying to rationalize walking back to our safe little spot in the grass. "I don't even know that he wouldn't fall out of this thing. I would not be responsible to put him in there" I tried again. But Parker was busy kicking his legs and arching his back to get away from my arms with a HUGE smile on his face. He was so ready and I knew I was being silly.
So I put him in the swing and held his little hand and put my other hand under the swing. I just kind of *moved* it backwards and forwards as far as I could reach to keep my hands on him and the swing. He worked very hard to pry his hand loose from my grip - he actually pushed my hand away! So I did what I had to do - I let go of his hand and I let go of the swing - and I pushed him.
I swear I did not breathe as he flew backwards away from me.
He laughed and squealed the whole time. He had such a blast!

I can not believe how grown up he is now. I remember back when he was so tiny. He has come so far. He can roll over, sit up a little, stand on his feet, he gets sad when Jon leaves in the morning, he cries when I walk past him without saying "hi" or something, he likes bananas, he does not like peas, he sleeps with a monkey, he likes to play in the water - he is just this perfect little person. He is growing up so fast. I'm not sad about it though. I can not wait to see how he will be the older he gets. I wonder what he will be interested in. Sports? Art? Science? Reading? Music? Horseback riding? It is just amazing to me that at this time last year I was just finding out that I was pregnant and now there is this whole new person in the world. He lights up rooms everywhere we go. He laughs and talks to everyone. We never leave the house without someone stopping to talk to him. I am already proud of who he is I guess. I suppose today I just feel lucky.

Well - we are headed back to the park! Hopefully he doesnt get his eyes set on the monkey bars!

Road Rage

The other day I was leaving work in my car. I was minding my own business, listening to Sarah Evans. Well I was stopped at a stop sign and so was a car to my left and there was also a car behind that guy. So - being the law abiding citizen that I am, I waited for the car to my right who got there first procede through the intersection. Now, it was my turn. So I went. Only - so did the guy that was behind the first car! He almost hit me. The thing is he was MAD. Not just "roll his eyes" mad but he was absolutely furiously yelling at me. As luck would have it (or not have it) he was going to turn left at the approaching light and I was going to turn right so he pulled up right next to me while we waited for the light to change. He had his whole upper body all the way out of the window screaming at the top of his lungs - swear words mind you - while poudning his fists HARD on the side of his truck. I was actually scared. I didn't want to make eye contact with him, but I also didn't want to look away. My doors weren't locked but I didn't know if I locked them if that would provoke him more (as has been my experience with the homeless people I have encountered on the street).
Finally the light turned green and he peeled off. I couldn't help but thinking - why was he so mad. Obviously he was in the wrong anyway - I had the right of way, but even still..even if I HAD been wrong - why was he so angry? And who does he think he is that he can berate a young girl sitting alone in her car?
Moral of the story - be NICE to other drivers....... or you will end up a blog entry!

To those who have been checking and have noticed that I havent written in a week - sorry. It's been a rough one!
Every year I need some kind of change. It seems like when summer comes I just feel cramped and I need my environment to change. So we decided to rearrange our apartment this week! Which was unfortunate for Jon because after trying 4 different arrangments and moving our couch to every side of the apartment possible...we decided the way we had it was really the only way! So we moved some pictures around and a couple of smaller pieces and I feel happy! I learned this about myself though..I do not like unfinished jobs and I really don't like leaving a mess. I had to leave it messy one night because I was so tired I could barely walk and I woke up at 5 thinking about cleaning! I thought about it all day! I would rather work 12 hours one day and finish the job then work a few hours every day for a week...but that is what we have had to do as Parker does not like to be ignored! Hopefully tomorrow we will be done and I will feel like I accompolished something!
On another note -
I went back to Children's today to see a friend who's daughter also has TGA. Delany had surgery a week ago. I do not want this entry to be about it, but being there brought so much back. The smell...as soon as I walked through the doors of the PICU it just stuck in the back of my mouth. Everything about it was just...awful. The kids walking around looking tired and weak, the parents standing by just drained. Everyone has the same expression...the "what happened to us that we are here? how did this place become home?" look. It was just weird. I saw Delany and remembered when Parker was that little and that sick. I watched Jen and Kevin talk to her and try desperately to make her comfortable and I remembered when Jon and I were there. I was watching Jen and Delany and I realized that I was wrong. I was never strong enough to be in that room with Parker. All of this time I thought I was the one who found strength but after watching it all from the outside I know now Parker was the strong one. Little Parker was strong enough for all three of us.