"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.

Kate has taught me...

Efforts to prevent the unauthorized consumption of ice cream are pointless. I confidently placed the Ben and Jerry's 'Phish Food' Ice Cream on top shelf of the freezer, clear in the back. Kate taught me: she CAN in fact get ice cream off of the top shelf in the freezer! I have also learned to never underestimate Kate's love for Ben and Jerry's.

A large diet coke spilled on the floor is ALWAYS hilarious.... but only after you have established the fact you are not in trouble. Kate taught me: Never leave diet coke unattended near her - but if you're going to, just make sure it's on an easily cleaned surface. In Kate's effort of be sneaky, I have learned she will never remove the diet coke from the place you originally left it!

Kate has taught me, a lollipop is a wonderful treat, and every effort should be made to stick the entire thing in your mouth at once! Kate also taught me to ALWAYS make sure I have a camera on hand when she is eating a lollipop. The 10 pictures I took yesterday are priceless.

Pictures from Niagara

An amazing falls view

Molly and her best friend "A". The first thing we did was play in the fountains. It was SO HOT they really needed to cool off.

Molly, "A" and Kate, inside the gift shop at the Niagara's fury attraction. It is a 4D circular theater that has a river running through it, and is like a virtual "ride over the falls" experience. The large rodent in the background is the virtual tour guide. Kate loved him!

Ripley's Believe It Or Not Museum. All six kids fit easily in Robert Wadlow's chair. *Robert Wadlow was the worlds tallest man, measuring almost 8 ft. Take note of the 'tween' in the background who is unwilling to make a funny face. She appeased me by rolling her eyes though.... at least I think that's why she was rolling them. Hmmmmmm.....

Molly acts like a sorcerer at "Galaxy Golf". She was "creating fire" with her bare hands, and we were all astonished at her "mad skills" - as Kate would say.

Niagara Falls.....

We are home from the falls, and I jokingly say "no one went over" but with 2 adults, and 6 kids that is really kind of a feat! We had an amazing time, and Molly with her friend "A" seemed to have the best time of all. In 24 hours, our list of items accomplished include:

• Walking down by the falls for about 3 hours


• Playing in the fountains


• visiting "Table Rock"


• "Niagara's Fury" 4D experience (Molly's favorite)


• Eating at Rainforest Cafe (Volcano treat and all)


• Ripley's Believe it or not Museum


• Swimming in the pool and hot tub


• pillow fighting


• Glow in the dark "Galaxy Golf"


• Flirting with the border patrolman on BOTH sides. (That was Molly, not me.)

Favorite pictures

Katarina and Me. I'm such a sucker for brown eyes!

Kat, on any given day. Dress up is her favorite activity.

Molly lighting a candle for Emily's 4th ~Angel Day~

My Sweet Emily Hope

August 25th 2003

Ronda, Spain

I did LOTS of hiking and rock climbing in this gorge, which is over a mile deep! The bridge is over 1,000 years old and you can hike underneath it to better view the waterfalls on the other side. It's amazing! My soul just loves this village.

New Tricks

Yesterday was a day of much anticipation for me. I was told by Molly yesterday morning, she had a new trick to show me when I got off work. Kate also had a trick for me and I was instructed to meet them at a neighbor's house, where there is a 4 ft swimming pool. Upon arrival, I found both of my daughters flipping around like little dolphins as if they had been swimming like this their whole lives. I should note, Molly has been deathly afraid of water her whole life and was actually a polliwog swim class drop out at the age of 3! She refused to "bob" under water and could not be promoted to the next class until she did. Rather than force the issue we decided to "take a break" for a while. I learned yesterday, Molly has not only learned how to BOB but she can also do the backstroke! She was VERY confident in the water, and I was absolutely elated for her. My Mother has taught her this trick in only three days! Kate (sweet little Kate) has NO FEAR and just goes right in. She is learning the crawl stroke, and was as cute as can be splashing around like a little minnow. She was also very proud of herself, which I find just delightful.

Creativity at it's best...

Yesterday, when I went to pick up my little gems from their grandmother's home, I was greeted at the door with the most amazing gift! Molly and Kat had spent the day being incredibly creative - making the most beautiful flower pot cakes. That's right..... these are CAKES! My girls were so proud of their creations, and rightfully so.... they're awesome! They even had little gummy worms in the "dirt"! How creative is THAT?!?!? Thank goodness my little sweethearts are learning the valuable skill I never learned.... how to cook!

Molly has become quite the little chef in the kitchen these days, and is actually more of a help than I am comfortable admitting. She even owns her own cookbook, which she bought from the school library this year. I believe she checked it out during the first week of school and then spent the entire year renewing it - because she was copying down each recipe by hand! During the last week of school, the librarian advised her she either had to bring the book back or pay $10.00 to keep it. It was $10.00 well spent!!! I may learn a thing or two from this book myself.... you never can tell!

Molly in pictures.....

The perfect smile
LOVING her birthday present
At Castaway Bay... we still LOVE santa!!!
4th of July "Water shooter" fight!

She got me GOOD!!!

COSI is something every kid should experience!

Kate in pictures...

Kate smiles from a seat in a C-130

Catching Tadpoles at Kingwood Center

Kate, in rare form

Nope, I'm NOT smiling!!!

Seriously Mom.... I'm so NOT smiling for your picture!!!

My FIRST update!!!!

I just love being able to share these photos..... The top photo is DARWIN. He is our Sulcatta tortoise, and is a direct descendant of the Galapagos tortoise. Kate and Molly do enjoy decorating his shell, and he never seems bothered by the activity. We have had him since 2000, and my Grandmother dearly loved watching him toddle around in an aquarium. He was roughly the size of a ping pong ball when I got him for Molly as a gift for excellent behavior at the doctors office; and Darwin has grown to be about 8 lbs now and 12 inches from top to bottom of his shell. He's like the family dog, only a bit slower - but with JUST as much personality! When he is full grown (in 20 years) we are planning to ride him around the yard. Anyone who would like to be added to the waiting list now may submit their names to me.

The picture of Molly and me was taken a few months ago, and it is one of my favorites. This is Molly's AMAZING smile I was bragging about in my previous post. I mention Molly's smile so often these days because she has an appointment with the orthodontist in one week for a consult on "stage 1" of her orthodontic work. Molly will undoubtedly have a $20,000 smile by the time this is all said and done - and while I can't help but be glad for her, I will say I have grown quite attached to the "crooked little smile" she currently has. Anyone who remembers Molly as an infant will recall she was born with a very prominent "cow-lick" in the middle of her forehead, and a blue vein across the bridge of her nose. The thing Molly loves most about this particular photo is you can easily see both of them. Molly will tell you that her two favorite features about herself are her cowlick and her vein. She says they make her special and no one else in her school looks like her. I love it! Those are also two of my favorite features on Molly.... but anyone who knows me, knows I am a sucker for big brown eyes - and BOTH of my girls have them! How awesome is that???

We have a trip to Niagara falls planned for this weekend, and I have to say I am wildly excited about the awesome experience we will undoubtedly have! We vacation there at least twice a summer, and last summer we took Molly's friend 'A' with us, as our birthday gift to her. "A" will be returning with us this year, and Molly is elated about that! (As am I.... she is just an awesome, awesome kid!) New to our agenda this year: I will be bringing one of my girlfriends with me (YAY) who has triplet girls almost exactly Kate's age! Yep... we're heading to Canada with 6 kids...four "preschoolers" and two "Tweens". In preparation for this trip, I purchased six rubber ducks (as is tradition) to "swim over the falls" as Kate likes to say. Quite unsuspectingly, I heard the water running a few evenings ago and almost simultaneously realized Kate was missing. I followed the sound and when I walked into the kitchen, found Kate standing on her stool, leaning over the sink and saying "Come on, you can do it!" very emphatically. Kate was teaching the ducks how to swim. She decided they needed to practice for the falls.... after all, it IS a bunch of water! ..... That's my girl!!!!!

Getting started

Greetings friends and family. Since I so greatly enjoy reading the blogs of my friends and relatives who live far away, I thought I would start my own blog to keep everyone posted on what's going on in our lives.... not that our lives are terribly exciting, but you never know. Something AMAZING may happen, and now I have a method of notifying everyone at once, since I am notoriously terrible at keeping up with Emails! I have titled this blog "Living with HOPE" because that has become the theme for our lives over the course of the last five years.

As you all know, I have been blessed with three beautiful daughters who have impacted my life in ways I can not begin to describe. Molly (who will be 9 next month) is kind, generous and is probably the most empathetic person I have ever known. She has a precious smile and is a light in the life of anyone who has the privilege of knowing her. She is the most popular kid around and whenever I take her out undoubtedly some child her age will break free from their parent to come running to Molly. What happens next is never a surprise.... it's always an embrace that would knock to the floor any unsuspecting person, followed by Molly's greeting ..... "I'm SO happy to see you!!!!" That's my Molly - or as she likes to be called "Molly-Pop" !!!

Kathryn (who will be turning 4 just two days before Molly's birthday next month) goes by many names: "Katie" "Katarina" "Kate or Kat" and "Turkey Lurkey". She is absolutely a joy to be around, and is a fireball of energy. Kate has the richest sense of humor I have ever known and she makes the funniest faces! She especially loves to throw people off guard by calling them the wrong name. For example, I am Most often "Mama" but occasionally she'll call me "popcorn". She has been known to call Molly "Darwin" and anyone in her path may be called "Elsa" (who is the girls dog at their father's house." Kate is especially fond of calling people "Sir" (if they're a girl) or "Ma'am" (if they're a boy). Kate, is probably one of the most authentic people I have ever known, and people learn very quickly to take her as she is. When you do this, you begin to see the true beauty of her personality.

Emily remains my inspiration in this world, and has been a tremendous source of strength and HOPE in my life. Sweet Emily was born on August 25Th 2003, and had she lived, she would have turned 5 in only a few weeks. Emily earned her wings just five days after her birth, because of a congenital heart defect which went undetected during my pregnancy. Her loss was devastating. However, as I began to heal, reflecting on Emily's brief life enabled me to rediscover the HOPE I had lost.... and that has made all the difference. So it is fitting that HOPE is also my ~Emily's~ middle name. I just love the word "Hope".... it is such a quiet and unassuming word. It asks nothing of you, like Faith or Love; and I had never really thought about the importance of HOPE until Emily came into my life. Now, not a day passes that I don't think about it. That is just one of the many, many blessings I have discovered because Emily's life touched mine....

As for Me, not much has changed over the last several years since my divorce. This blog will NOT become a commentary on my social-love life, but to appease the curiosity of some, this is where I stand on the whole dating-marriage issue. Many people have asked if I am currently seeing someone, and whether or not I will ever get remarried. I'm not going to be so bold as to say "No, Not ever" because as some of you may recall, I was actually engaged for four weeks last summer. (Yep - Four WHOLE weeks.) I will say "I do not see it in my future" (marriage, that is) ... at least not in the next several years. The reality is, I truly enjoy having my independence and spending my time with my girls. I once read "IT TAKES AN AMAZING MAN TO BE BETTER THAN NO MAN AT ALL!".... I chuckle in agreement with the truth of that statement. *For those reading this who have already found the love of their lives, I applaud you and hope you are not offended by my cynicism.


With that said...I am still working 2 jobs (just one of the MANY joys of single parenting) but am blessed with jobs I enjoy. I am a Bereavement Coordinator for a non-profit Hospice, and am also an NCO in the National Guard. In my "free time" (and by that, I mean when my girls are with their Dad) I Volunteer for the pediatric palliative care team at a local Children's Hospital. This is especially meaningful, as we used Palliative care during Emily's 5 days with us. I am honored to be able to give back to this team in some small way. Other than that, I REALLY enjoy going to the rifle range on Tuesday evenings (Otherwise known as "Tactical Tuesdays") where I shoot my Kel Tec 380. I most enjoy shooting a CZ97B .45 cal and a CZ SP01 9mm handgun. I have also developed an affection for a 44 Magnum Revolver, which is like a canon in my hands! Now that's a good time! Shooting is a "useful hobby" for me and is also wonderful source of stress relief! Anyone who has never gone out to a rifle range should absolutely do so, and I will be glad to accompany you!