And they're off.....

Well, almost.... We're heading out to Disney in just under 48 hours, and so this will likely be my last update before we go. The girls are busy watching their free Disney Vacation planning video (I think we've seen it 100 times now) and making lists of things they would like to do. We have a complete schedule of the theme park operating hours - including "Extra Magic Hours" and have been watching the weather forecasts closely, for planning purposes. So far it looks like RAIN on my birthday - but we'll be spending it at "The Happiest Place on Earth" so I very much doubt a few showers will dampen our spirits. I will let everyone know how the trip went upon our return. Until then, take care and be safe!!!

Sweet success!

This is my NEW favorite picture of Kate and Darwin! Let me back up and say Darwin will eat anything. If it's green, he'll try to eat it. He is actually pretty good at inspiring us to keep our floors impeccably clean, because if it is on the floor Darwin will try to eat it! If that doesn't work, he'll definitely climb on it and we can not risk him getting tipped over!

Last evening, I allowed the girls to have a "special snack" in the living room. It was chocolate cake, and Kate LOVES chocolate cake. She made the mistake of walking away for a second and returned to discover Darwin just inches away from her plate. I snapped this photo as she was dashing away and giggling with delight - cake in hand.

Darwin enjoys a bowl of buttered noodles - again, compliments of Kate.

Darwin acts like "the family dog" after a pizza party, cleaning up the leftovers. I allowed him to gnaw on this pizza crust just long enough to snap a photo, and then I took all of it away from him.

"Note to self....."

I just have to share what Molly created yesterday:

Molly is quite the artist, and I truly believe she possesses more artistic talent in one pinky finger than I do in my entire body! Molly sketched this herself yesterday afternoon. It's a Pegasus, and Molly has a true love for horses so she draws them often, and VERY well. If you look very closely at the bottom left hand corner of the page, you will see where she has written "Note to self".... and she has several things listed. I had to laugh out loud when I saw that, because anyone who knows me will recall that is one of my most widely used phrases. I even have a note pad that reads "Note to self" and at the bottom is a box where you can check "Received by self". My sweet Molly may look just like her father, but she is ME through and through! ...... I just LOVE it!!!

Caridology lesson and revalations about HLHS.

To any physicians who may be reading this, I apologize in advance for my gross generalization. My friends, these are Heart Valves. At least in my home yesterday, they were what I used for a demonstration of what heart valves look like and how they work. Yesterday afternoon I overheard my girls talking about Emily's heart and asking what "exactly" was wrong with it. Their Aunt on their father's side had told them our Emily had died because of a hole in hear heart. This was not even close to the issue, but I give her credit for trying to help them understand. Emily died because of several issues, and she was actually born with 3 separate "Terminal" heart defects. *FYI, the probability of a baby being born with one defect is 1/400. The odds of a baby being born with ONE "terminal" defect are 1/800. Emily was born with 3 separate (and we were told, unrelated) "Terminal" heart defects. To the knowledge of her cardiologist, she was the only baby to ever be born alive in the united states with her specific series of defects. However, for explanation purposes, I tell people that Emily died primarily because she had HLHS, which is Hypoplastic Left Heart Syndrome. Basically the left side of the heart (which is what pumps the blood to the rest of your body) doesn't form, and the baby is born with what is essentially a two chambered heart instead of four. During my demonstration yesterday, I drew the chambers on paper so the girls could better understand. I also drew the narrowed aorta and explained the problem by demonstration with a bendy straw. However, it was my explanation of AV (Aortic) valves (and problems associated with them) that impressed and delighted even me!

Below are my three heart valves:


This is a standard Tri-cuspid Valve, which is what most people have. We ran water through it, and both girls noted how it held water beautifully, releasing it only when I opened the valve. It keeps the blood in you heart moving in the right direction, and Molly and Kate were delighted that they both have THIS type of valve in their heart.

I then explained this next valve to be a "bicuspid valve" and showed them how it works. I have a Bicuspid (AV) Aortic Valve (the girls now know this) which has been giving me some trouble as of late. (The girls do NOT know that, but have seen me wearing a halter monitor, etc.) I used the water demonstration to explain that a Bicuspid valve can work just as well as a tri-cuspid valve. They were delighted with this result.

Finally, I showed them Emily's valve, pictured above. Emily had a Bicuspid Aortic valve (AV valve) with "Aortic insufficiency". Her valve was leaking and very deformed, and the girls were both shocked to see that the water ran right through the valve, and just sloshed around in the sink (which for our purposes represented the heart.) I think the visual representation was very helpful to Molly, and I know Kate just enjoyed playing in the water, and with the valves.... as evidenced by this next picture. Kate and Molly then proceeded to stuff the "valves" down their shirts, and run around the living room screaming "I have a heart valve! I have a Heart Valve!"

I am glad that my girls are processing, and reprocessing the events of our lives. I explained to Molly this is VERY normal, and invited future conversations about the subject. I told her I KNOW her questions will become more and more in depth as she grows older, and let her know I am ready and very glad to answer any questions she has. She doesn't ever have to worry about making me sad by asking because I LOVE to talk about Emily, and feel it's important that they know what happened so they can be educated in the future.

As I was going through my own heart testing back in April, I learned a few things about my heart problems, as they relate to Emily's condition. This information has set me back a bit in my grieving process and honestly, has been very difficult for me to handle - although I continue to try. As a result I have only shared it with a few very understanding people. With that said THIS INFORMATION COULD BE SENSITIVE....

Since April, I have learned:

• HLHS is not caused by a "fluke" as we were told five years ago. Within the past year, they have discovered that HLHS begins at about 11 weeks and is caused by a stenotic AV valve. The AV valve does not open properly, and the left side of the heart does not form because of the issues with blood flow.


• AV valve problems are also NOT a fluke - most often (but not ALL the time) they are genetic. The gene is passed down on the Mother's side, and so my probability of having child with an AV valve defect ( because I have one myself) is 25-50%. This helps me understand why I have had 5 pregnancies, and have brought 2 children home. Apparently, I hit the 50% mark.


• Molly and Kate's probability of having a child with an AV valve defect is still 25%, even though they have no problems themselves. This is due to the fact they have a full sibling who died of this defect. I will have to find a way to explain this to them in the future. I'm still thinking about how I might approach that conversation, when the time comes......


• 7 years ago, HLHS was a death sentence, and there were very few surgeries to repair this defect. The surgeries that were available typically had "less than ideal" outcomes. Just 5 years ago (when Emily was born) survival rates for babies with HLHS was 20%, and surgical outcomes were still "Less than Ideal." TODAY, survival rates for HLHS are up to 70% - which I find amazing.... but I am still sad and even a bit angry at times that my daughter could not have been part of that 70%.


• There is a "fetal surgery" that can be done at about 12 weeks gestation for babies who are diagnosed in utero with a "stenotic AV valve". This surgery will PREVENT HLHS from developing! A catheter with a balloon is inserted into the infant's heart and essentially, it "blows" the AV valve open. At birth, the baby requires one surgery to replace the AV valve! *In 2003, the AV valve could not even be replaced in infants...today it can, and is done routinely.


• There is a push by perinatologists to perform fetal echo cardiograms as standard procedure around the 12 week mark for Mothers who have had a child with a Congenital Heart Defect. I fully support this movement.


• Molly and Katie thoroughly enjoy creative demonstrations about how parts of their body work. I have learned I can explain the death of their sister in a very "matter of fact" way using McDonald's Sundae lids, and not even cry while I am doing it! I have also learned, no matter how strong I am during these discussions with my girls, after they go to bed that night I will inevitably break down, with a pain in my heart I had almost forgotten existed.


• I have learned that after five years of grieving, I still blame myself for the death of my daughter. I have been told that I shouldn't - but I do.


• I have learned that guilt is perhaps one of the most painful companions of grief.

Uplifting...

After Yesterdays post, I wanted to make sure I added something uplifting today, so people wouldn't quit reading! I will say we are now just one week away from our greatly anticipated Disney Vacation! Eight days and seven nights and we are meeting up with good friends of ours who live in Florida! I'm SO excited.... we'll all have SO much fun! The girls will be having "princess make overs" (dresses and all) inside Cinderella's Castle on the morning of my Birthday. It's called "The bibbity-bobbity-boutique" and Kate already knows she is going to be Cinderella. Molly is still debating on which princess she would like to be... Pocahontas, Belle or Jasmine. These are tough decisions you know. On a positive note, Emily's grave was fixed yesterday afternoon and it looks very nice again. AND tonight is "Tactical Tuesday" so if you've read my opening post, you know where I'll be spending my evening!...and after this week, I can sure use the stress relief! Molly had an appointment with the orthodontist yesterday and the GOOD news is that she does not need 2 stages of treatment. She only needs braces in 2 to 2.5 years! YAY...... That's super exciting! We were ALL pleased with that info - but Molly was especially pleased.

And the cycle continues.....

This is not by any means my most uplifting post, but this is the reality of my life. For those who may not have heard, I have a stalker. This is not a new development. "L" has been harassing me since November 2002! I have a 5 year civil protection order which was issued in March of this year, which includes a "deadly weapon" restriction for him, although he has not turned his shotgun into the Sheriffs department. I have 3 full pages of documentation (with over 45 separate incidents) since all of this began in '02. While I am awaiting response from the law director as to whether or not they will pursue charges, the damage continues. These are pictures of my Emily's grave. The first was taken before Emily's "Remember", "Miss you" and "HOPE" stones were stolen last month, after being at her grave for several years. I went to her grave yesterday afternoon to take fresh flowers, and found her vase had been knocked over and pulled out somehow. It is screwed into a base which is out of the ground as well. This could not have happened accidentally or because of a mower. After combing the cemetery desperately trying to justify to myself that this was just a bunch of stupid kids knocking over vases, I found my Emily's to be the only one that was damaged.

Now I'm sure you're wondering how I *know* this was "L" and I will say this.... "I can not prove it." However if you knew his history, you would also KNOW it was him, and when I went to the police yesterday afternoon to file my 2nd report in as many months, they did not question the fact that it wasn't him. They know him well. I should add, this is the 2nd time this week that the police has had to be called because of suspicious activity. (There was also an incident at work on Thursday.)

"L", whose history began with me when I was a Child Protective Services Caseworker, is a cyclical stalker and for the past 5 years has always harassed me in July and August (which is the anniversary of our court hearings and my Emily's death). Then "L" typically gives me a break until November. Without fail he begins stalking me again, from early November until mid January. After that, I usually don't hear from him again until July; but this year he was "a bit off his mark" and threatened me at work in February. This seriously concerned MANY people, especially with the threats he made and the circumstances surrounding his "delivery" of those threats. I received an ex-parte protection order in February, and then went to a full hearing in March. At that time, my protection order was extended until 2013.

ANYWAY, I guess I just have to say I am really sad about the damage to my daughter's grave. (Quite an understatement, but there it is.) I called the cemetery this morning, and they were unaware of the damage. Hopefully they can fix it this morning, and I will have to be more vigilant at keeping an eye on it. *sigh.... you would think "L" would have more exciting things to do than stalk me.... my life is just NOT that exciting! I realize this is an obsession thing... a mental health issue, but I still don't get it. I just get so frustrated that Emily's birthday and angel day (Which are difficult enough to get through) are always marked by increased anxiety due to this stalker issue; and I am increasingly disheartened by the fact he continues to delight in our pain. I regret that I have to spend my time focusing on our safety, instead of healing...... and as usual, we have reason to be concerned this year as well.

******* Edited to add: I spoke to the cemetery this afternoon and they should be able to fix Emily's grave today. They confirmed they were NOT the ones who kocked over the vase, and that Emily's grave is the only one that appears to be damaged in the cemetery. I provided them with a photo of "L" and they will be more vigilant in looking out for him. If anyone is interested in reading more about "good practice safety tips" and noting warning signs of potential stalkers, a good website is http://www.esia.net/ and also http://www.ncvc.org/ "stalking resource center" link...."statistics" link... and then "fact sheet". Among other things, in this section you will learn that the average stalker harasses his victim for 1.3 years according to one study and 1.8 years according to another. However, in MOST cases the stalking lasts for only one month. If there has been romantic involvement, that increases to just over 2.2 years. 28% of victims seek a protection order, and 69% of those are violated once issued. To put my case into perspective, "L" has been stalking me for 5 years and 9 months as of today, and my Civil Protection Order has been violated on three occasions (I am aware of at least) in less than one month. I have filed police reports with each incident - but because he has not physically harmed me YET ("Yet" being the key word here) I am still pretty much helpless. At least that's how I feel. Anyway, as a favor to me please look (even briefly) at the website. It's worth checking out. *******

Back from Castaway Bay

Molly and Kate love people in BIG costumes
Molly in front of the ZIPCPOASTER
Kat, relaxing for a brief moment

The girls are home from Cedar Point's Castaway Bay with Grandma and Grandpa. Cast away bay is a hotel-water park that is similar to "Great Bear Lodge" or "Kalahari". My parents took them there for a mini vacation, and upon their return, my Mother commented (in a rather surprised tone) "this was the best place for a grandparent to take their grandchildren" and the girls behavior was excellent the entire time. Mom was quite the "Brave heart", going on the zip-coaster with Molly at least twice. (For those who don't know, a "zip-coaster" is like a roller coaster water slide.) Kate best enjoyed the wave pool and the baby pool. So you get the idea of what this place is like, I am attaching photos of MY trip to Castaway bay with the girls, since I do not have any from yesterdays trip.