THE KNOPF FAMILY

Things Don't Always Go As Planned...

2010-08-11T10:49:00.002-03:00

You would think that would be my mantra... In my life, it seems that this happens more than not.

I had routine (or so I thought) knee surgery in May to help to correct and old injury that had left my knee full of arthritis... according to my Orthopedist, I have the knee of a 60 year old.... perfect.

So, I have the surgery and am home the same afternoon. All is well... my Doc is happy with his work. I am in moderate pain, but nothing I didn't expect... I was sent home with some good drugs.
Day 3 after my surgery I didn't feel well all day. Nothing I could really put my finger on... I just felt off. More tired, and kid of disoriented. David got invited to a friends house to spend the night, and I decided to go along for the ride to take him to his friends thinking I might feel better if I got out of the house for a bit. It was kind of humid out, and I felt like I couldn't get enough air, which didn't help how I had been feeling all day. I remember sitting in the back eat with my leg propped up on a pillow... I went to say something to Dave and it didn't come out right... I remember thinking it was the narcotics and just decided to stay quiet.

I went to be early thinking a good nights sleep would help. I was sleeping in Caroline's bed and Dave was in our room. I woke up a couple of hours later feeling like my chest was being crushed. I called for Dave who helped me get up.... once I was sitting I felt a little better, but decided I must be getting pneumonia and after going back and forth on what to do, we decided to head to the ER at 11:30pm.

Once we got the ER, things went crazy. I knew I was in trouble when we got there... I was sweating profusely, and couldn't get my breath.. I could feel my heart pounding in my chest. They took me in right away and were very concerned... my O2 levels were only in the low 80s and my heart rate was 175... I was sent to x-ray to get a picture of my lungs and was told that I did NOT have pneumonia and that they wanted a CT scan of my lungs... when the results of that came back, I was diagnosed as having pulmonary embolism and an ambulance was called to take me to the hospital! This was just nuts! The Dr. was telling me that I was lucky to even be alive... that a lot of times, people die immediately and don't even know what hit them!

I spent a few days in the hospital while they dissolved the remaining clot in my leg which is where the blood clot originated from and the clots in my lungs slowly dissolved and I didn't need oxygen any more. I was sent home on blood thinners that I now have to take for 6 months... not fun... blood draws at least once a week, lots of dietary restrictions etc... but I guess it could be worse!!

Pretty scary to think I could have died from this.... I'm young and healthy..... things like this only happen to other people... It's been a real wake up call for me to live each day to its fullest and to not take things for granted.

The knee is healed nicely... I'm still going to physical therapy, but it getting stronger and i pain free.

I think this post catches everyone up on the last few months and explains why I haven't posted in so long!!!

Have a good day everyone!!!

Something To Think About....

2010-08-03T15:38:00.001-03:00

"At the end of the day, faith is a funny thing. It turns up when you don't really expect it. It's like one day you realize that the fairy tale might be slightly different than you dreamed. The castle, well, it may not be a castle. And it's not so important that it's happy ever after, just that it's happy right now."

Caroline's First Horse Show....

2010-08-01T17:39:00.003-03:00

She has been working all summer for this...
She came in 3rd and 5th in the 2 classes she competed in today.... not bad at all for the first time out...

I am so proud!!

Ryan turns 21???

2010-07-28T16:31:00.005-03:00

Really??? How did that happen?? He was just a little boy... I can't believe he is a grown man.. he moved out in May and got an apartment with his girlfriend Stephanie.

It just blows my mind.... This is how I think of him...
About 6 months old with Dave (notice the hair on Dave???)

2 years old

Not this...

Ryans 21st Birthday.. with Stephanie

He makes me proud... he makes me feel old at the same time!

Long Overdue Update!

2010-07-27T10:48:00.004-03:00

Hi All!

I have not dropped off the face of the earth... promise.

Life has been pretty much a whirl-wind here the last few months, and because of it I have had a severe case of writers block... or more appropriately, just so much to write about that I didn't know where to start.

So where to start now?? I'm not even sure, so I think I will break it up into several smaller posts in attempt to not miss anything.

April this year brought us to the realization that we had to say good-bye to a very important and special member of our family... Munson, our 14 year-old chocolate lab ended his struggle with cancer late in the afternoon during the first thunder storm of the season... ironic that it started to storm just before the vet got here. Munson hated thunder, or I should say he was terrified of it. He would shake and whine and want to be in your lap the entire storm.. but weighing over 100lbs, we had issues with this. So while waiting for the vet to get here, I was sitting with him on the deck saying my good-byes when I heard the rumbling in the distance. I said under my breath, " Oh God... not now" Munson looked up at me, hauled his tired old body inside and quietly laid down on the living room floor. no whining, no shaking. He just laid there and waited with me for the vet to get here and end his suffering.

While the rain poured down and the thunder boomed outside, we gathered and said good-bye to our beloved "Brown-Dog". Four months later, I can't type this without tears. He was one in a million and is missed every single day.

So, fast-forward to 2 /12 weeks ago... We were just finishing vacation at the beach (another post later) when I got a phone call from a friend of mine... did we know anyone interest in a Lab puppy? Part of me wasn't ready... I was looking for another Munson... not just any dog would do... but the other part of me spoke louder.. a new puppy.. the kids were ready... they had been for awhile now... it was just me that was unsure. So we took a ride the Saturday we got home from vacation and I must admit... I fell in love... we picked out a sweet little guy... black... all wiggly and full of energy...and headed home. As I pulled out of my friends road, a few rain drops hit my windshield, followed by a loud clap of thunder. There was my sign from Munson... tear rolled down my face as I looked back to see Ben and Caroline smiling and holding the new pup.

Meet Odin...

We have all fallen in love with this little guy... he is full of energy, but sweet as can be too.

Ok... that's it for today....

More tomorrow... I promise.

Vicki

Shampoo Bottles...Living with OCD

2010-03-24T17:02:00.002-03:00

One of the more frustrating issues of dealing with PWS is the OCD (Obsessive - Compulsive disorder) issues that we deal with.

There was a lively discussion on my facebook page this week about an article that I wrote about a recent episode on Mystery Diagnosis. The show featured a young man with PWS, but they only focused on the food issues... they made this person out to only have issues with food and spoke nothing of the behaviors that plague people with PWS.

While the food issues are tough to deal with, they aren't the main issue I deal with here with 3 kids with PWS... but.... OCD....??? My God some days I feel like I'm losing my mind with the little things they do... here is a perfect example...

A few weeks ago, I bought new shampoo and conditioner. They were both big bottles and with the other bottles already in the shower, there wasn't room on the shelf to put the new bottles so I put them on the edge of the tub behind the shower curtain. Last week when I cleaned,I threw out empty bottles and there was room on the shelf for the new bottles. One would think that this isn't a big deal... but I have noticed every morning when I take my shower that the bottles are back on the edge of the tub behind the curtain... I usually knock them over opening the curtain and they fall on the floor or into the tub...not a big deal... I pick them up, put the on the shelf and continue my shower. This afternoon when Ben came home from school I sent him to put his back-pack in his room and heard a noise from down the hall... I looked and sure enough... he stopped off in the bathroom to check on shampoo bottle placement!!!! He still had his backpack on from school and he was switching the shampoo bottles in the freekin' tub already! I asked him what on earth he was doing and he burst into tears and yelled at me that they weren't where the belonged and stomped off to his room. All was not right in his world because the shampoo bottles weren't in the proper place in the tub. It got me wondering if he has been thinking about it all day long? Probably.

We have note-books full of baseball stats... Notebooks. Full. I'm not kidding... and baseball season has barely started... David is a Redsox fan.... Ben Yankees... Its going to be a looooong season. The fights have already started.. "Redsox suck"... "No Yankees Suck" .... "No Redsox suck"... You get the picture. There is always somebody gloating about a win and willing an ready to rub a loss in the other guys face and there is always somebody with an attitude because their team lost ... usually because the other team cheated. sigh...

So, while food issues can be controled with a strict diet and a keyless entry lock on my kitchen door... there is not diet or lock for OCD... and it runs rampant in my house on a daily basis. The shampo bottles and the baseball addiction are just 2 examples... The non-stop NEED to ask the same question 100 million times gets old pretty quickly. Most of the time we laugh at the quirky things these guys do... but it does wear on you after awhile.

Freezin' For A Reason.... Penguin Plunge 2010!!!

2010-01-14T09:30:00.006-04:00

Click here to join TEAM VIKING or to donate

Its that time AGAIN!!!!!

February 28th....

Ocean Beach .....

Don't be left out....

It's the First Beach Day of the 2010 Beach Season!!!

Please Support Special Olympics CT!!

Here are some shots of TEAM VIKING from last year! We had SOOOO MUCH FUN!!!!

Make an on-line slide show at www.OneTrueMedia.com

CLICK HERE TO JOIN TEAM VIKING OR TO DONATE!!!

Snow Ponies

2009-12-20T15:59:00.001-04:00

We woke up to 20 inches of snow this morning... The ponies had a blast playing when I let them out! check out the video!

Make an on-line slide show at www.OneTrueMedia.com

50 things About ME!!!

2009-11-23T20:52:00.008-04:00

Borrowing this from Snarky Mommas Blog Feel free to cut and paste...link back to me so I can read too!!

1. What do you like in your coffee? During the week... 1/2 &1/2 and sugar... sometimes on Sunday I like "Happy Coffee" AKA.... Baileys!!

2. what are you reading now? READING?? That only happens on vacation! I can't pick up a book without reading it cover to cover!

3. Do you own a gun? Nope.

4. Are you registered to vote? Yep.

5. Do you get nervous before Dr.s appointments? Only those that involve issues with my kids.

6. What do you think of hotdogs? Deutchmacher... on the grill... chopped onions... deli mustard.

7. Favorite Christmas song? Silent Night

8. What do you prefer to drink in the morning? COFFEE!!!!

9. Can you do push-ups? LOL!! s'erously???

10. Name of your first boyfriend? Serious one?? Dave.

11. Favorite piece of jewelery? My wedding band

12. Favorite Hobby? Spending time with my ponies.

13. Do you work with people who idolize you? yeah right... I'm a stay at home mom to teenagers... nuff said.

14. Do you have ADD? no

15. Whats one trait you hate about yourself? I can be a little short tempered... but....just a little.

16. Whats your middle name? Ann... boring ol' Ann!

17. Name 3 things you are thinking this exact moment? 1. my foot hurts. 2. The woodstove has the house nice and warm. 3. I can't wait for Thanksgiving weekend!

18. Name 3things you bought yesterday? 1. a new cell phone for Alex 2. A new cell phone for Jake. 3. Gas

19. Name 2 beverages you drink regularly? 1. coffee 2. wine 3. water

20. Current worry right now? Will I get it all done before 10am Thursday morning?

21. Dress size? Using my "skip card" on this one!!!

22. Favorite place to be? BEACH!

23. How did you bring in the New Year? Went to bed at 10!!!

24. Where would you like to go? Right now?? The BEACH!!

25. Name 3 people who will complete this? No idea

26. Whose answers do you want to read the most? Anyone who will answer

27. What color shirt are you wearing? yellow jammies

28. Do you like sleeping on satin sheets? yuck!!

29. Can you whistle? Nope.

30. Favorite color? green

31.. Could you be a pirate? ~~~OYE MATEY~~~

32. What song do you sing in the shower? I don't.

33. Favorite Girls name? For all 5 of my pregnancies I had " Meghan Elise" picked out... never got to use it though. Did use Elise as Caroline's middle name though :)

34. Favorite Boys name? Jack... could never use it with our last name though!!

35. What is in your pocket right now? no pockets in my jammies!!

36. Last thing that made you laugh? The cat falling out of a tree in the back yard this morning!!

37. Best Bedsheets as a child? WTH??? Bizarre question.

38. Worst injury you have ever had? I'm not very injury prone... not sure.

39. Do you love where you live? Yes!

40. How man TV's do you have in your house? 8... wow I don't think I have ever counted before... that is scary!!!!

41. Who is your loudest friend? Claudia :-)

42. How many dogs do you have? 2

43. Does anyone have a crush on you? shhhh... don't tell.... I think my hubby does!

44. What is the most fun thing you ever did? WOW... hard to decide.... there are so many things!!! Jumping in the ocean in February is right up there!!

45. Favorite Book? Tuesdays with Morrie

46. Favorite Candy? Hershey's with Almonds!

47. Favorite Team? East Lyme Vikings

48. What song do you want played at your funeral? Toes... Zach Brown Band.

49. What were you doing at midnight? Sleeping!

50. What was the first thing you thought of when you woke up? It can't be morning already... can it???

Friendship...across the miles...

2009-10-31T14:15:00.009-03:00

12 years ago, I took a referral call from the National Office asking if I could please talk with a mom from Arkansas who had a little boy with PWS and many of the same respiratory problems that David was dealing with.

I took the referral and made the call... and my life has been forever changed because of that call.

The mom Stephanie had a little guy who she had adopted who is 2 years younger than David. We hit it off on the phone and in the early years would talk 2 or 3 times a week sometimes... Theses days it's less often... but we always pick up right where we left off! I always smile when I see her number come up and I answer and hear her voice with its cute southern drawl say" Hey Girl!!" That's ALWAYS how our phone calls start! BTW.... she says I am the one with an accent!! LOL!

In the last 12 years we have held each other up through the good times and the really bad times... Stephanie was a single mom who over the course of the last 12 years adopted 7 kids with special needs; 3 with PWS, 2 with Downs Syndrome, One with CHARGE Syndrome and sweet ALlie Grace who had a stoke before birth and was severely brain damaged..... Steph was the driving force and support when we adopted Ben... I often say that if it weren't for her involvement Ben would not be our son.

When Caroline came along 2 years later it was Stephanie on the other end of the phone saying " You can do this!" Stephanie was the first person I called when we walked out of the courthouse after finalizing Caroline's adoption.

I remember a phone call from The Children's Hospital very early one morning... You see, Stephanies Daughter Reagan who has Downs Syndrome had a failing heart. Stephanie fought a ton of Red Tape to get Reagan on the Transplant list... in Arkansas they didn't believe that Reagan had the " quality of life" deemed necessary to be put on the list. Stephanie didn't take no for an answer... instead she went to battle... she contacted congressmen, she got the press involved she pushed and pushed.. she would call me and cry and I would tell her to keep fighting. But Reagans health was failing... then early one morning the call came that they had a heart... and I got a phone call from Steph saying that she was waiting in the ER for the transplant team to come in with Reagans new heart... we both cried. I had been trying to figure out how to get to Steph for a funeral... Now baby Reagan was getting a new heart... 10 years later that heart is still beating strong inside a beautiful young lady!

Steph didn't stop there though... she adopted Allie Grace who had a stroke before she was born and her prognosis was not good. Stephanie took her home and loved her. Allie knew the love of her family and lived a wonderful life. Sadly, Allie went to be with Jesus last year. Again... I got a call from Steph... I wasn't home.... and got the message "Allie Grace earned her wings." My heart breaks every time I think about it... sweet Allie Grace who I only ever knew through photo's and through Stephanie... Last night there was a beautiful video tribute to Allie Grace...there was not a dry eye in the house as her sweet face flashed up on the screen and you could clearly see Stephanies love and dedication to her and feel how missed she is. I a m still brought to tears thinking about her....Thank you Steph for sharing her with me... I am forever changed by knowing her.

You see... all this... this friendship... all this love... All Long distance. Stephanie and I have NEVER met in person... Until last night...

Stephanie... who has been single parent to this wonderful bunch of kids for all these years..met a great guy...and got married a month ago in a simple backyard ceremony. They traveled to Long Island to where Roberts family lives for a reception last night.
So after 12 years... and all we have been through... Steph and I finally got to meet in person!!! It was an awesome night! I traveled out with Jake, and David, Ben and Caroline to the reception...

I will let the pics tell the rest of it...

Me and Steph with David, Ben and Caroline

Ben and Stephanie... if he could only understand her role in him being our son!!!

David and Steph

Jake Cool

"Every party needs a pooper...thats why we invited you...." Poor Caroline was soo tired!

22 Years Ago Today...

2009-10-10T05:00:00.002-03:00

I married my best friend, my soulmate, my better half.

October 10, 1987

22 years 7 kids, 2 adoptions and many, many ups and downs... here we are. I wouldn't trade one second of it and am looking forward to whatever the next 22 years bring!

Happy Anniversary Baby.

I Love You......

Then, Now, and Always.

On our honeymoon in Mexico

The Reason I keep this blog...

2009-09-16T09:54:00.003-03:00

I'm often asked by our nearby friends and family why I keep this blog... why I get personal with the stories of our family and in particular the ups and downs of life with Prader-Willi Syndrome.

Yesterday I got this e-mail and picture and I just want to take a second and share it with you.. as this is the reason I do this... This mom was so devistated by her sons diagnosis that many of our first phone calls all she could do was cry... This is what I vowed to do almost 15 years ago when David was born and we had no information, no support, nowhere to turn... I vowed to make sure that I do my part to make sure that other new families don't have to feel as alone and helpless I we did those first few weeks...

Hey Vicki - I reached out to you very shortly after our son was diagnosed with PWS in January 08. Since then we've had some serious injuries in the family , a tornado that wiped out our farm, etc. and I haven't been a very diligent communicator or connector. But tomorrow I am having our 2nd child and it is a leap of faith that I never thought I would be able to take. I have to say as strange as it sounds - I wouldn't be taking it without your presence in my life. The support you gave me and the HOPE you gently spoke into my heart at the darkest time in my life will never leave me and I think of you and speak of you on a near daily basis out of my admiration and respect for the amazing mother you are. I follow the blog regularly and it blesses my life to see those beautiful kids of yours beating their odds tremendously. My PWS mentor and I have never connected and she is having such a hard time with her own challenges that I hope it will still be OK for me to pitch some questions your way from time to time. J just turned 2 so we'll be transitioning into having to face more of this it seems . . . or at least in a different way. I hope you and your family and greatly blessed as you are such a blessing to others.

Beach Day...

2009-08-10T21:23:00.005-03:00

Hi everyone~

After yesterdays downer of a post.... so sorry about that... sometimes it just gets to me...
Anyway... Today was a great beach day...here's some pictures...

He's off....

2009-08-09T21:09:00.011-03:00

Hi Loved Ones..
I dropped David off at camp today at noon for 2 whole weeks. Part of me is jumping up and down doing the Happy Dance! I have 2 WHOLE weeks free of David and his issues..

Then there is the other part of me...

The part who got a lump in her throat saying goodbye to him for 2 whole weeks...

The part who wishes that his life was easier... that I didn't so DESPERATELY NEED these 2 weeks break as part of my survival with this damned syndrome.... hell.. I have never sent ANY of my other kids away for 2 weeks.... actually.. I am getting ready to send Alex off to college in 3 weeks and I don't think HE has ever spent 2 whole weeks away from us.. so why is this break so needed????

David is high maintenance... always has been. Probably always will be. His very existence revolves around how many buttons he can push in a day... in an hour... in 15 minutes... you get the picture right? He isn't happy unless there is turmoil.. he can't enjoy a day at the beach... he is ALWAYS worried about what is next... NEXT ACTIVITY... NEXT FOOD OPPORTUNITY... NEXT OPPORTUNITY TO MAKE SOMEONE LIFE DIFFICULT.. this is our reality with him and with PWS... it is not like that with the other 2... I'm not sure why.. but they are both so easy comparatively!!

By this point in the summer I am ready for the week break... ready for not dealing with his issues for 2 weeks... ready to go park my ass in the sand at the beach and not be nagged to death about "what is next" It's hard to explain... part of me feels like a part of me is missing with him gone for 2 whole weeks... and part of me (possibly a bigger part) is so thankful for the break that I feel guilty for how much I am looking forward to it.
I know he is well taken care of at camp..... I know he has a blast... I know that he probably misses us but is enjoying his break from us... BUT....

I still feel that pang of guilt that I can't provide the structure he needs...
That I am really looking forward to NOT dealing with him and all his issues for 2 whole weeks

Ok.....not sure where this post is going.... so here are a few pictures from today....

David all packed and ready to go

Everyone at camp welcoming the campers!

\

DAVID and he favorite counselor Amy!

In his cabin all unpacked!

With his counselors for the next 2 weeks!

I know he will do just fine... probably "too" fine.. and another little piece of my heart will be ripped out in the process.... life with PWS is just plain ol' hard sometimes....

~Vicki

Playing "Catch Up!!"

2009-08-04T06:27:00.007-03:00

Hi All!

I'm not really sure where the summer has gone, but I already feel like it is slipping away faster than I can possibly enjoy it!

The Knopf Family has been on the go this summer... we had Dave's parents here back in June for the big GRADUATION WEEK.... Alex Graduated from High School: As seemed to be the case every single time we had something to do outside this spring/summer... it rained. So the pictures are not great... I was trying to keep the camera dry but still get a few shots..
Alex right after getting his diploma!

Alex and his girlfriend Kourtney

Alex with his Grandparents!
David graduated from Middle school the next day: Again... the pictures aren't great...but here are a few

Then on Saturday we had a big family party to celebrate both graduations.. I got a few pictures in before... well... it ummm.... RAINED again. When I tell you it rained... I mean down poured! It went from being a nice sunny afternoon to a monsoon in the matter of a couple of hours!! But we made the best of it anyway...

Here are some of the guys playing a game of horseshoes...Dave spent the week putting the pits in!

Dave's Dad and Uncle with David

That next Monday we went to Alex's college orientation for the day... I can't believe in a few short weeks he is going off to college!! I am going to miss him so much! It is exciting to be getting him ready to go, and the nice thing is that school is only about an hour away so I am sure we will see him often.

So... that was the month of June in a nutshell! I am working on a slide show of our summer vacation at the beach with Ben's birth family... There are too many pictures to share here, but I promise not to leave you hanging for a month before I get it on here. Here are a few "preview" pictures to get you by until I get them all organized:

Other than that, David started at his new school in July, they have a summer program, so its been nice that he has been able to get to know the teachers and some of the kids this summer. He leaves for camp for 2 whole weeks on Sunday, so I have to get him packed and ready to go.

Oh.. and the first night of football was last night...another season is officially underway!!!

Stay tuned for the vacation slide show... I promise to get it done by Friday!!!

Have a good week!

~Vicki

Caroline Riding Today...

2009-06-19T21:55:00.006-03:00

Hi Bloggies...
Sorry I am so pathetically behind in my posting... I just can't seem to keep up these days!! Soo much going on... and not enough time to share... yeah I know excuses... excuses!!!

Alex Graduates frm High School next week.... he ois off to Central Ct State University in the fall... Engineering Major for him...

David Graduates from 8th grade... he is is off to a specialized High school setting about an hour away from home... he will be commuting back and firth every day...

Lots of planning and work on my part to make all this happen.. and life goes on here in the mean time...

Anyway the main reaon for this post... my beautiful girl at her riding lesson today. She has been riding for about a year and in the last couple of months has gone from needing to be led around the ring to trotting and posting on her own.... from having to be in the safety of the indoor ring all by herself with the instructer to being in the outdoor ring with other riders! I am sooo proud of her and her determination to do her best... the riding has done wonders for her tone and more than that for her confidence!!!
Enjoy the video!
Love to all and I promise to update soon with more photos!

Make video montages at www.OneTrueMedia.com

~Vicki

Prom Pictures...

2009-05-23T17:37:00.002-03:00

They had a great time!!!! scroll to the bottom of the page first though and turn off the music player I have playing...
Enjoy!!!
~Vicki

Make video montages at www.OneTrueMedia.com

Special Olympics Pictures..

2009-05-18T10:26:00.003-03:00

Hi All,
Sorry for the lack of posts... it's just such a busy time of year.... here are some pictures from Special Olympics soccer qualifier at U-Conn 2 weeks ago...

The next few weeks will ring lots more pictures.... David is going to the Junior prom in Shelton with his friend Brittany (who also has PWS) on Friday night.... I promise lots of pictures.

Stay tuned for that and other upcoming events such as
Special Olympics State games
Alex's Senior Prom
Davids 8th grade graduation
Alex's High School Graduation

nope it isn't going to be TOO busy here this month!!!!!

Love 'ya all....
Vicki

Ben... the goalie

David

Caroline and her friend Hillary

Jake (he is a partner on the team) Look at that hair... isn't he just adorable???

Please Say a Prayer....

2009-04-29T22:22:00.004-03:00

This is our friend's son Brent. These photo's were taken a couple of years ago when Brent had first joined the army.

Brent was critically injured lastweek in Iraq when a roadside bomb went off right where he was standing. He was the only survivor.
He was initially sent to the base in Germany for surgery and was then flown to Walter Reid on Sunday. From there he was flown to Seattle and then to his base in Alaska where he faces more surgery to remove shrapnel from his face, neck and legs. His wife was able to get to Alaska to be with him this week, so he has her support now, but he is facing many painful procedures to repair his injuries.

So please take a second and say a prayer for Brent and for all our soldiers as they fight to defend our country.

We love you Brent....get better soon buddy.... David Ben and Caroline miss you!!!

Some Birthday Pics from this month....

2009-04-29T16:21:00.005-03:00

Caroline opening her Birthday gifts with Ben Helping

David and Papa

Happy 16th Aric!!!!

Caroline and Googs
And I had to share this one of Ryan last week after work... he crashed and the cat was happy to keep him company!

Stay Tuned for Bens Birthday Pics.. his 10th is tomorrow... wow... where are all my babies going???? and Alex is 18 on Sunday!! YIKES!!!

Saturday we have the SPecial Olympics Soccer Qualifier at U-Conn... Pray it doesn't rain and that it isn't 9- degrees either.... we seem to either get one or the other every year!

Have a good weekend everyone!!!

~Vicki

What we did today...

2009-04-25T22:14:00.003-03:00

Well...
I now have water to my barn!! This may not seem like a huge thing to some of you, but after lugging water buckets 2 times a day for the last 4 months Its a HUGE dealt to me!

Bright and early this morning we got up, put the ponies in the barn for the day (they were less than happy about this arrangement, but we had to pull up the fencing to ge the trench dug) and the digging tarted at 8am. We are also making the paddock twice the size that it was by opening up a huge area behind the barn and around the other side of it.

Theres more backhoe work to be done tomorrow but it is going to make such a huge difference when its done!!

Enjoy the pictures from today... My sisters fiance is the one who owns the equipment and spent the day digging for us..... Thanks Jeremy... See you in the morning

Frosty being entertained with a dandilion in his stall
Bear sayin' I've had enough... let me out!!!

My Children finally succeeded in BREAKING ME!!!

2009-04-23T15:30:00.003-03:00

Take a look at my left elbow.... this is what happens when your kids are too lazy to bring their laundry al the way to the laundry room and just toss the laundry down the stairs for the "Laundry Fairy's" to come clean up!
I went down the stairs, slipped on someones gym shorts and slid on my butt all the way to the bottom... unfortunately however, my left arm didn't follow me! I went and had it x-rayed and initially they told me that nothing was broken, but I got a call yesterday from the Drs. office that there is a tiny hairline fracture just below the elbow and I need to go see the orthopedist.

Lovely.

Stay tuned for more soon....
Birthday posts maybe tomorrow...

Blog Break O.V.E.R.!

2009-04-22T18:05:00.003-03:00

Hi Everyone!!

Wow I am behind in my posts!!! I have been flat out this month, but promise to catch up over the next couple of days with stories, pics, bithday updates etc...

For today though I am going to share some pics from my trip out west to visit my Best Friend Regina... We have been friends for 13+ years and met at our first PWSA conference... When David and her son C were babies.... the rest is history... We have been through it all together and I really think we were meant to be sisters!!
Now the cool thing is that David and her son C who has PWS are best buddies... David came with me on my trip west to spend the weekend with C & R(who also has PWS... Regina adopted him when he was a baby.)
We had so much fun!!! I will let the pictures do the talking... w ehad so much fun!!!!

Regina with "R"

David and "C" playing a board game

David and Regina out to lunch with 3 kids with PWS!!!

Best Buddies

Stay tuned tomorrow for the April Birthday Updates!!!!

It feels good to be back!!!!

Love you all,

Vicki

Spread The Word.. 2009....

2009-03-31T21:37:00.002-03:00

We all had t-shirts... all 9 of us... I just couldn't get the the teenagers to pose for the camera...
Enjoy the pics...

We all had t-shirts... all 9 of us... I just couldn't get the the teenagers to pose for the camera...

Enjoy the pics...

3-31-2009

2009-03-28T08:47:00.003-03:00

SPREAD THE WORD TO END THE "R" WORD.... We are doing our part here at the Knopf household... I even bought everyone here the t-shirts to wear on Tuesday...

Whate are you doing to help???

(scroll to the bottom and turn off my music first)

The plague...

2009-03-26T21:03:00.002-03:00

has hit the house...
I have been sick as a dog all week.... Caroline has been down with it since Monday... she is really starting to worry me... all she wants to do is sleep... we're going to the Dr in the morning.

I need to get better and I am praying that nobody else catches this....

I leave next Friday... One week form tomorrow... with David... my son not DH.... to go visit my best friend in the whole wide world and her family... she has 2 kiddos with PWS.... we have been best friends since her older son with PWS and David were babies... we met at our first PWSA conference many many years ago and the rest is history!! We have been through adoptions, deaths, weddings, and everything in between.... I can't wait to see her and the rest of the family... and this is the first time that I will be taking David with me.... her son and David are kind of kindered spirits.. cut from the same mold.... they will have a blast too.

So... stay tuned.... I promise to update...
I just need to get over this crud that I have and be ready to roll next week!!!

~Vicki

Walk in The Woods...

2009-03-19T21:24:00.000-03:00

Caroline's Riding Lesson 3/13/2009

2009-03-16T08:08:00.002-03:00

Hi All,
Enjoy the video.... Caroline has been taking riding lesons since this summer, she is doing really well as you can see! We are so proud of her! You may want to scroll to the bottom of the page first and turn off the music I have playing so you can hear what is being said in the video.

Make video montages at www.OneTrueMedia.com

I'm Still Here....

2009-03-10T21:31:00.003-03:00

just MIA this week! It has been a busy week. Dave is in Atlanta GA (where it is warm and sunny) for work this week... In a nice hotel... with a state of the art gym and pool.... and I am here... in CT.... where it can be 60 degrees one day... and 30 and snowing the next... it is cold, and muddy, and dreary... here. I am so ready for spring.

I have been busy being a single parent this week.... UGH.... I don't know how single parents do it... I am exhausted trying to keep up! I have also had a part time job of fighting for Growth Hormone for the kids this week... just to add to the fun! This happens once or twice a year or so... I have to do battle between the pharmacy, the Drs. office, and the insurance companies... it's crazy... and it really frosts my butt when my kids have to sufer because other people aren't doing their job. David, Ben and Caroline have been without GH since Friday because a certain person can't get it right. After many phone calls today that ended up with me on the phone with the Dr. on his cell phone non-the-less.... and him giving me his cell phone # to call him if this isn't taken cae of tomorrow... I think I might finally be able to pick up the Growth Hormone that has been sitting at the pharmacy for almost 2 weeks now!

Aside from that... I have been busy filling out College Scholarship forms for Alex... hoping for every penny we can get towards tuition!

So blog family.... that's it in a nutshell!

Oh one more thing.... check out the new button in my sidebar....

CHANGE THE CONVERSATION... STOP USING THE "R" WORD 3/31/2009
http://www.r-word.org/
Our choice of language frames how we think about others. It is time to respect and value people with intellectual disabilities.It is time to accept and welcome us as your friends and neighbors.

Please visit the site and pledge your support!!!!

Have a good night everyone!!!!!

~Vicki

5 Random Things About Me....

2009-03-02T14:45:00.004-04:00

Thought this would be fun on a snowy day.....

1. I am NOT a morning person... never have been... never will be. My kids and my husband know not to talk to me until I have been up for 1/2 an hour and had at least one cup of coffee.

2. I love the beach... the sounds, the smells, the feel of the sand between my toes.... I could be a professional beach bum

3. I have been on a wine kick lately.... I love a good Merlot... I need to give up my 2 glasses a night though and get my butt out walking.

4. I have lost 45 pounds since last February... thanks to Weight Watchers and walking 5 miles 3 times a week... hence the reason need to give up the Merlot :-)

5. The housework I hate the most is doing laundry... it is the most ungrateful job I do... and it's never done... no matter how much I do there is always MORE!

Feel free to do your own "5 Random things" on your blog... leave me a link to it in my comment box so I can check out your list... feel free to link my page back to yours!

Have fun!!!

Vicki

D.O.N.E.

2009-03-02T09:59:00.003-04:00

UGH!!!!!

I swear I am moving south..... I'm thinking Mexico would be a good choice.... it doesn't snow in Mexico right?????

We woke up to a Flippin' foot of snow this morning!!!!! Which of course means NO SCHOOL again today.... The wind is howling and its like 25 degrees... so no chance of them even wanting to go outside to play..... No.... they would rather stay in and fight over.... EVERYTHING!!!

It is March 2nd.... Spring is right around the corner.... right???? Just this last week we had a couple of warm days and the glacier that was my yard had finally melted away and we could see grass... granted everything is brown and bare looking.... but at least it wasn't white!!!!

Sigh....

V

Some Honesty... PWS style....

2009-02-28T21:26:00.005-04:00

Hi everyone...

Hang on while I try to get this out in some kind of coherent fashion.

We have been in the world of PWS for 14+ years. When David was diagnosed 14+ years ago... we were devastated... we were pissed off... we questioned WHY??? We curled up and wanted to die rather than deal with this. But here's the reality of the situation.... PWS was here and not going anywhere... We had 2 choices... curl up in a ball and die... let PWS consume us... and let it turn our lives upside down... OR.... find a way to deal... find a way to make our life normal again... we had 4 other kids to think about..... we needed to figure out a way to survive this... if we didn't... it would mean the end of life as we knew it... and I wasn't willing to give it all up because of a diagnosis of PWS. As I watched my baby struggle to survive... and as I watched him defy the odds... and at some point I realized... IF HE CAN DO THIS..... THEN DAMN IT SO CAN I.... THIS IS HAPPENING TO HIM... NOT ME... I AM HIS MOTHER.... IF HE CAN SURVIVE THAN DAMN IT SO CAN I... WHO THE HELL AM I TO GIVE UP ON HIM.... HE DIDN'T ASK FOR THIS... THIS IS MY JOB... SUCK IT UP AND DO EVERYTHING YOU CAN FOR HIM.

I have been accused of being a "PWS LOVER" before.... and I guess if that means loving my children for who they are.. than yeah... GUILTY AS CHARGED.... but if that means "loving PWS" THEN YOU AVE ME ALL WRONG..

I wish...
my kids didn't have to struggle every stinkin day of their lives
my kids didn't have to feel the pain of being hungry all the time
my kids didn't have to feel the pain of being different
my kids didn''t have to work twice as hard at everything they do to keep up.

I wish I..
didn't have to worry about every aspect of their lives all the time
didn't have to look into special schools... special programs... special everything for them
didn't have to worry about them outliving me.
didn't have to watch them struggle to do the things that other kids do without even thinking about it.

But understand...
I wouldn't change a thing about my life or the decisions we have made.... making Ben and Caroline part of our family was probably two of the most defining moments of my life.

I hate what PWS does to my kids... but I can't change it... so... I must learn to embrace it.... to live with it.... to find the good in it.... I LOVE MY KIDS.. and if that means I must accept PWS.... THEN...SO..BE..IT...There are worse things in life... after 14 years of this... I realize that it COULD BE SO MUCH WORSE. I could be visiting a grave every week... I could be feeding a 14 yearold though a tube and changing his diaper... I could be waking up every morning wondering if he will be alive... or not... and how I will survive another Day with him or... worse.... without him.

Instead...
I have to watch their calories...
I have to deal with some behavior issues..
I have to work to ensure that their futures are secure and that they will have the supports they need.
I will get to see them grow to adulthood.. to achieve goals... to grow into adulthood
I will get to witness their achievements.. and watch them grow.. physically... emotionally... spiritually.. and know that I had a part in something much bigger than me.
I have to work a little harder to make sure that they have what they need in life.

So while I can honestly say I wish that I had NEVER heard the words PRADER-WILLI SYNDROME... I can HONESTLY say I wouldn't change a thing about my life... except to make things easier for David, Ben and Caroline. If it weren't for PWS... I seriously doubt that Ben or Caroline would be part of our family... think about it... why would they be?? ... but for the life of me.. I can't imagine our lives without them... not for ONE... SINGLE.. SECOND.

PERIOD.

So... that's the Long and short of it... I wouldn't wish this on anyone... but I also wouldn't change it for a single second.

~Vicki

Time for a Pony Fix!!!

2009-02-21T18:24:00.005-04:00

Pictures from today..... enjoy!
Caroline and Bear

Caroline and Frosty goin' for a walk

A girl and her wheelbarrow... it's a BEAUTIFUL THING!

Video from Sunday....

2009-02-17T22:02:00.001-04:00

Enjoy...
You might want to go to the bottom of the page and turn off the music I have playing first... that way you can appropriately hear the screams as we hit the water!!!

Make video montages at www.OneTrueMedia.com

2009 Penguin Plunge!!!

2009-02-15T22:18:00.005-04:00

Before the plunge... we had some time to kill... so Dave thought it would be funny to play around with the bow tie...

Pictured in no particular order from the PLUNGE... the water was 36 degrees.. the air temp was about the same... Dave and I both went in up to out necks... it literally took our breath away.. you couldn't inhale it was so cold and as we headed back to shore it took everything we had to get our leg muscles to work correctly... FYI.... Jake went in not only once.. but TWICE!!!!

TEAM VIKING raised over $2,500.00 today!!!!

Our photographers/ babysitters for the day.... Aric and his girlfriend Kiersten.. this was taken back at our friends John and Lori's house... Lori had a HUGE pot of chowder and HOT grilled Rhuebin sandwiches ready for us when we got back to their house for lunch!!! Thanks Guys!!! Lunch was great!!!!!

A HUGE THANK YOU TO EVERYONE WHO SUPPORTED US AND SPECIAL OLYMPICS!!! WE WILL BE BIGGER AND BETTER NEXT YEAR!!!! A SPECIAL THANKS TO TEAM VIKING...

DAVE

VICKI

JAKE

ANTHONY

DOUG

JOHN

ALEX

KEVIN

JESSE

and everyone who came out today to support us!!!

you guys ~~R-O-C-K~~

stay tuned tomorrow for video clips... I'm too tired tonight to sort through them.

~Vicki

Tomorrow is The Day!!!!!!!

2009-02-14T17:42:00.002-04:00

Stay tuned for pictures and video tomorrow afternoon!

You guys all ROCK!!! Team VIKING has raised over $2500.00 for Special Olympics CT!!!

I am so pumped up!!! This is going to be a BLAST!!!!!!!

If you are in the area... tomorrow at Ocean Beach... 12:00pm.... come on down and cheer us on!!! We need all the cheering we can get!!!!

Thanks guys!!!!!
Vicki

Shorty's Pub Shout Out!!!!

2009-02-08T15:55:00.003-04:00

Thanks Melody, Tracy, Matt, Shawn, Brian and CREW for letting us hold a 50/50 raffle to benefit the Penguin Plunge next Sunday!! You guys are the BEST!!! We reaised a ton of money!!
Stay tuned for pictures next weekend!!!! Love you guys!!!!!!

~Vicki

PLEASE SUPPORT ME!!!!!

2009-02-05T12:59:00.002-04:00

I cant believe I am doing this!!!!!

Freezin' For A Reason....

2009-02-03T20:06:00.002-04:00

Sorry Bloggies... January just has had me in a funk. We haven't had a full week of school without interuption either in the form of a cancellation, Delay or early dismissal since Christmas break and the kids will be on February Break for some 11 days starting next Friday!! I Need a week on a beach somewhere... anywhere.. I am not picky... I just need to bake in the sun and swim in the surf.

Speaking of swimming in the surf... Next Sunday February 15th... I will be diving into thw icy waters of Long Island Sound to benfit Special Olympics.. if you are so inclined you cna make a donation to Special Olympics in support of me at:
http://soct.convio.net/site/TR/Events/General?px=1149561&pg=personal&fr_id=1836&et=RXO7aJxLi0p1Gi3PRuHlqw..&s_tafId=5620

Please pray for warmer weather than we have had!! I promie LOTS of pictures!!!

Love you all....
Vicki

Dear January.....

2009-01-28T21:21:00.001-04:00

You suck.
Sincerely,
Vicki

More to follow.... it's all I can muster right now.

Pony Pictures of the week

2009-01-18T20:44:00.006-04:00

The Sunset the other day... looking over the back of our property... I love this old oak tree!

Frosty and Bear grazing

Frosty

Bear

Both ponies

Birthday Shout Out!!!!

2009-01-12T12:33:00.005-04:00

To Jacob... AKA...Jake, Jakey, Puddin', Pud, "P-muffin"
My baby#5... you are 13 today!!! How on earth did that happen??? I now officially have 5 teenagers in the house!!!

Happy 13th Birthday!!!!!!

January 12, 1996

A Vent...

2009-01-07T14:47:00.003-04:00

I am SICK to DEATH of TEENAGERS sitting on my couch... eating Doritos... watching movies .... text messaging their friends...and just being in my space ALL DAY LONG!!!

GO BACK TO SCHOOL FOR GOOD GOD'S SAKE ALREADY!!!

There... i feel better now.

Randomness...

2009-01-07T09:36:00.004-04:00

Hi All,
Just trying to come up for air after vacation and it seems lke every time I try, someone pushes me back under!!!

Got the Christmas stuff all put away on Sunday... I don't know why, but after Christmas it all just looks like clutter and it was driving me nuts! Besides it all needed to be dusted and I just didn't have the energy to dust it all! My angel on top of my tree had dust webs on her!!! Done... back in the box until next year!!!! It felt so good to get it all put away, the needles vacuumed up for the most part... I will be finding them until April I swear.

Monday the kids went back after having a 90 minute delay.... ok... not ideal but I will take what I can get. After having them home for 12 days I can wait another 90 minutes, right??

Yesterday the sun was shining and everyone was out the door to their appropriate destinations on time! What a treat! I enjoyed the quiet for awhile, got some laundry done, ran a few errands with no kids... came home and spent some time out in the barn with the ponies cleaning up etc... I am totally enjoying having them here... I love the way they smell, I love the way the fresh hay makes the barn smell, I love their soft noses and how when you walk up to them they put them up expecting a kiss.. I love how they follow me around while I am working outside and most of all I love to see Caroline's face light up when she comes home and they are waiting for her, I love seeing how gentle and patient they are with her.

This morning.... it iced overnight... typical New England weather.... snow... followed by sleet... followed by freezing rain.... followed by plain old rain.... followed by more snow.... you get the picture, right?? Well... guess what??? NO SCHOOL!!! Are You Kidding me??? Ok... a 90 minute delay might have been a good idea so that they could have gotten the roads sanded, but right now at 8:45 in the morning it is just raining!!! It is supposed to rain all day... they haven't been back 2 whole days and now this????

Ugh...

Anyway..... here are a couple of pony pictures to share and one of my insane cats who were protesting the removal of the Christmas tree on Sunday... every time I got close to them the swatted at me. They are cute though, aren't they??

Have a good day today and pray for better weather tomorrow!!!

~Vicki

From Our Family To Yours....

2009-01-01T16:49:00.002-04:00

5 years ago today...

2008-12-30T21:37:00.003-04:00

We were airlifted to The Burn unit at Birdgeport Hospital after David severely burned his leg in a back yard accident involving a campfire.

We spent months in the hospital.. almost 2 weeks in ICU. His leg is healed now, but the scars will always be there... in many different ways.

I was driving by Gardner Lake Fire Department at 4:30 this afternoon when it hit me that today was the day 5 years ago at that exact time that we were at the helocopter pad right there at the fire department being airlifted out... the sky was the same.... the start of a beautiful sunset... it was so surreal being lifted into the air... I had to ride up front with the pilot ( I had dog poo on my shoe and that is all I could think about was how bad it smelled) and the sky was so beautiful... so peaceful.... and yet at that very moment our lives were being turned upside down... we would live in the hospital for months... David would under go many painful surgeries...

Here is a post from a journal I started keeping the night after his accident.. It still makes me cry to read it.... keep in mind 3 weeks beofre the accident, Ben had very involved kidney surgery that kept us in the hospital for 2 weeks... we had only been home with him for 2 weeks when David got hurt.

Hi everybody,
I never thought in a million years that I would be doing another one of these pages.. let alone so soon, but they are a great way to keep everyone informed about what is going on. On Monday afternoon, we had a small campfire in the back yard which is something we have done from time to time with the boys. We're not really sure exactly what happened, we were all right there but it was one of those moments that just happens so quickly that its all a blur. David somehow cought his left leg on fire. By the time I reached him from maybe 20 feet away it was too late. I had to smother the flames with my shirt which I ripped off my own body. I knew instantly that it was really really bad. I started yelling for Ryan to call 911 which he did. Ryan kept it together for me in the first few minutes, getting the emergency vehicles dispatched, getting the kids in the house, and taking his own shirt off and giving it to me to cover up with.. (I only had a bra and jeans on) He then stayed with the other kids and cared for them until Dave got home. We were taken to the firehouse at Gardner Lake where David and I were Life Starred to The Burn Center at Bridgeport Hospital. The entire trip took about 20 minutes, it was terrifying but comforting to know that we were getting to where we needed to be so quickly. The Pilot and paramedics on the helocopter were amazing and kind.. they kept me informed and gave David the upmost care.Once at teh hospital Trauma unit David was taken almost immediately into surgery. He has 3rd degree burns from his knee to his ankle completely around his leg. They had to cut the skin to prevent swelling from stopping circulation to his foot. I spent the hour he was in surgery, praying for his life.. It has to be one of my darkest times. I can't even type this without getting very emotional. I felt and still do feel very responsible for all of this, even though everyone has been so supportive and reassuring that I couldn't have changed it.Yesterday (monday) they changed the bandages and decided that he was ready to start skin grafts. So he was scheduled to go back to surgery this morning( Tuesday) to begin the grafting process. He was in surgery for 3 1/2 hours today and they took healthy skin from the tops of both of his thighs and grafted it to the burns. Now we Wait... not an easy thing... until Monday and pray that the grafts take and that they start to grow. David will possibly be in the hospital for a few weeks. They just don't know how fast he will heal, and if there will be any setbacks.. our 2 biggest enemys are infection, and the risk that the grafts won't take. Tonight I am home with the kids and Dave is at the hospital with David. We have been switching back and forth so that we both get at least a little rest and the kids get to see both of us. Everyne has been awesome with helping out here, we have friends and family who are babysitting, cooking, doing laundry, etc.. I appreciate each and every one of you. This is got to be the toughest thing we have been dealt and having the support of all of you has been incredible.I will try to update this page daily when I can. love, Vicki

What an incredible recovery it has been....

Had to share tonight.

~Vicki

Christmas Cookies...

2008-12-30T08:59:00.003-04:00

These were taken Christmas eve... three kids with PWS and baking cookies!! They were having a blast... it was a "tad" OCD at times and VERY entertaining listening! I put Dad in charge of the mixing and overseeing the entire process while I manned the oven and did the dishes!
I did ask him at one point which recipe the beer went in! He said something about it being a "key ingredient!" hmmmm...

More Pony Pics....

2008-12-28T09:56:00.003-04:00

I love this first one... Frosty kept getting too close to the camera while I was trying to take pictures! Nosey pony!!!

This is what happens...

2008-12-26T21:10:00.004-04:00

to you and your new Bitty Twins when you spend 2 whole days taking care of your new ponies....

More pony pictures tomorrow...

Christmas Surprises...

2008-12-25T16:10:00.007-04:00

What is that coming up our driveway on Christmas Morning?

Are THOSE Santa's Elves making a Delivery??? What on Earth is in that Trailer??

Santa's Elves brought Caroline her very own Ponies?!?!??!?

Caroline with Bear

Caroline with Frosty

David with Santa's Elves!

Ben with Frosty

Ok... Now the Story behind this Christmas gift!

About 8 months ago I put our application in to a program Called Personal Ponies. They are an organization who provides ponies to kids with Special Needs as companions. You can check out their website here... www.personalponies.org

We got a phone call a week and a half ago that these to were available and would we want them in time fro Christmas!?!? After trying to figure out the logistics of getting ready for them the week before Christmas, we decided to go for it! We workd non stop for over a week, building a stall in our barn, putting up electric fencing in a foot of snow, etc... to make it happen.

The woman who runs the program here in CT and her husband and 2 daughters packed the ponies up bright and early this morning and headed our direction. The ponies were all decked out with Christmas bows and Bells and the girls were dressed as elves! Sooo sweet! Caroline had abolutely no idea what was going on and was completely blown away when she realized what was happening. She didn't know that we had built a stall or put up the fencing... she was completely surprised!

Stay tuned for more pictures... I hope you all are having a Merry Christmas...

Love,

Vicki

The Final Countdown....

2008-12-23T06:18:00.002-04:00

Hi Everyone~

We are in FULL Chirstmas gear around here this week! I have been so busy I haven't had 2 seconds to write!

We got well over a foot of snow this weekend and the weather has been so cold! The kids had a snowday on Friday which put a huge crimp in my Christmas Shopping, so yesterday was the day. I left the house at 10am ( The kids had a 90 minute delay due to icy conditions) and didn't get home until after 4! I am done except for a few small things that I am heading out for this morning.

Stay tuned to Blog Family... we have big things going on here Christmas Day!! Some of you already know what the surprise is, so please keep it a secret here on the Blog for now.
I promise to post pictures as soon as I can on Christmas Day.
Dave and I have been working non stop to make this surprise happen in time for Christmas. We have had the help of a few of Santa's Elves too. I am s0 excited I can hardly keep it to myself...... But I'm gonna... so you will just hae to stop back and see what is goin' on here on Christmas Day!!!

If anyone wants to take a guess as to what the surprise is, please feel free to leave a comment... and No we are NOT adopting another Baby!!!

Love to all of you.
~Vicki

EEEEEKKKKKKK!!!!!!

2008-12-18T07:49:00.002-04:00

Christmas is in ONE WEEK!!!

I have SO MUCH shopping left to do it isn't even funny. Seriously... not funny.

The weather forecast is talking snow storm tomorrow... more snow for the weekend... more snow for Monday!!!!

Where are all of you with your shopping??

Good Luck!

V

The Mother Letter Project

2008-12-13T11:02:00.005-04:00

You all may remember me posting a long time ago about about the Mooney Family and their journey of 99 days with their son Eliot who had Trisomy 18 or Edwards Syndrome.. see the video of Eliots life here. http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

This story falls close to my heart, as 13 years ago this month Dave's brother Mike and his wife Kathy had a baby girl with Trisomy 13. Michaela was born/died just a few days after Christmas. Although I never had the chance to meet her, when I watch this video it makes me think of her.

Anyway.... instead of Christmas Gifts this year, the Mooney Family is donating the money they would have spent on gifts to charity. Matt Mooney is collecting open letters from Mothers to Mothers to give to his wife as a gift.

He is inviting all to participate by sharing their "Mother Story" with him to add to the collection.

Click on the picture above or the link in my right sidebar to read all the details.

Please consider participating in this wonderful tribute to Motherhood.

Have fun!

~Vicki

Christmas Magic...

2008-12-11T10:13:00.009-04:00

Christmas is my absolute favorite time of the year... I have collected so many special Christmas decorations over the years and I really try to have each one of them mean something to our family.

This year my favorite find is a story called "The Elf on the Shelf" Its a cute story that is about one of Santa's Elf's who comes to live at your house for the holiday season to see wether the children of the house are being "Naughty or Nice" He reports back to Santa each night and then before morning he comes back to your house and takes up a new place in the house for the kids to find him when they wake up. The set comes complete with a little elf that you go online and register with his own name. My kids are loving this and it is fun every morning to see where our elf is hiding! So... Here is "Maxwell" The Knopf Family's own personal line to Santa! Thanks Angie for the idea!! My Kids love this!!!

Here is my tree... I just wish I could block out the air conditioner behind it...

Our First Christmas

Ryan's Baby ornament... one of my all time favorites

from our cruise to the Cayman Islands 3 years ago

I'm not sure how this became an ornament, but it always has been...this was from the babyshower before Ben came home. It Says

"Finding a special child to love is more than a dream come true...I did not give you the gift of life, but it my heart I know The love I feel is as deep and real as if it had been so, for us to have eachother is like a dream come true! No, I didn't give you the gift of life... life gave me the gift of you.

This was from an ornament exchange on the PWS list years ago... made by Karen.. Aunt to Misty.

My Nativity scene, made by Dave's Grandmother and given to us on our First Christmas, it is sitting on the buffet sideboard that belonged to my grandmother who died last year.

Given to me right after David's accident 5 years ago

My Santa's with the print above that says "Life is not measured by the number of breaths we take, but by the moments that take our breath away"

This is a music box given to me when David was born.

These are a few of my favorites... stay tuned for more soon!!

peace..love..and light.

~Vicki~

Cool School!!

2008-12-10T07:44:00.003-04:00

East Lyme High School is Channel 3's Cool School of the week!

Tune in... Alex was interviewed for his participation in the cardboard boat race.. he had to build a cardboard boat for his engineering class.

Alex and Aric will be leaving here at 4am on Friday morning to be at the school when they go live on the air at 5am!

If you are local, tune in and watch for my guys!!!

Have a good day

~Vicki

Quick Update...

2008-12-09T08:09:00.003-04:00

Hi Everyone...
Sorry I have been MIA this week. I've been busy decorting, shopping and trying to survive some OCD issues (With Ben and David) that seem to crop up every year about this time!

We seem to have a bad case of the "Gimmies" here with Ben and David making their Christmas Lists... each is trying to out do the other and one gets mad if the other puts the same thing on their list.. it's exhausting.. really. Lastnight I finally told them to either put the lists away or I was writing to Santa to let him know about how they had been acting!
Well.... this put Caroline into tears and she wasn't even involved!!! She is worried that Santa might actually skip our house all together if the boys don't start behaving!!!

************!!!!PROZAC... TAKE ME AWAY!!!!**********

Anyway... I am off to the mall (for a gift for Hollister Boy) and to meet my sister for lunch.... I'm looking forward to a little sanity time... minus the trip to Hollister with the blairing music and the gobs of purfume!!! I may just run in... grab the first hoodie sweatshirt in a Large I can find.... throw some money at the counter and run out!!!!!

Stay tuned for some photos of my decorating efforts this week!! I love my decorations and my house looks so pretty right now!

Have a good day!!

~Vicki

14 Years Ago Today...

2008-12-01T07:56:00.007-04:00

our world was turnd upside down and shaken to the core. 7 days later we heard the words Prader-Willi Syndrome for the first time and our lives were never the same again...

but what we had no way of knowing then, was that through the devistation of David's birth and diagnosis so many amazing things would come from it and what an awesome, terrific kid he would be!!

The song that is playing I used to play for David and dance with him... I would sing it to him and cry... I still get teary listening to it, this song really helped me to heal and knwo that he was going to be ok.

~HAPPY 14TH BIRTHDAY DAVID~

Then

Now

It wasn't our day.....

2008-11-28T09:36:00.006-04:00

It's been a busy couple of days with all the football activities leading up to yesterdays Thanksgiving Day game with our big rival... Waterford.... unfortunately the "Football Gods" weren't on our side yesterday and for the first time in 7 years we had to give the bragging rights back to Waterford with a 20-loss.

It was still a fun day full of Good friends, good food and good memories.

Wednesday night we had the last Team Dinner of the season, complete with a couple of wonderful speakers who had played Viking Football in the past who shared their memories and thoughts on the game ahead.

Thursday morning Dave and Ryan were up and out the door at 4am to cook breakfast for the team with the Youth Football Coaches. I headed to the High School at 6am with the crew in tow to get set up and Breakfast was served at 7am to 60 hungry football players.

From there we headed out to the field to get our spots staked out in the stand for the game.. there were a couple of thousand people there yesterday and I wanted "our spot" to watch th game and didn't want it taken while we were on the field for Senior Day. Anyone who knows us, knows where to find us at game time... top row to the right of the press box!

Once we were all set up, Dave and I headed to the field to meet up with Alex for Senior recognition.. the moms were all presented with Roses and the dads all wear their sons away jerseys.. its pretty cool and a fun way to start off the last game these guys will play.

It was a good game, but we just couldn't get it in the end zone.. The guys played hard.. real hard. But we have several key players who are out injured and it showed.

Ben runs the water out for the team and at one point toward the end of the game, he came out of the huddle with the water bottles and the Ref helped him to the sideline kind of comforting him... it was then that I realized that he was crying... he takes this game very seriously and these boys are all his "brothers" and he was so sad that they weren't going to win that he just couldn't hold it in. I got a picture of the Ref comforting him as they got off the field... you will see it below.

After the game, we headed home for a yummy Thanksgiving Dinner followed by dessert at Tom and Claudia's house. By the time we got home, and got the kids in bed we were so exhausted and I think I was asleep before my head hit the pillow!

Enjoy the pictures....

Dave and I getting ready for Senior Day.

Dave and I with Alex

Seniors and Captains out on the field at the beginning of the game Alex is #63

Kick off.. Alex #63

Aric #67

These are from the end of the game.. I didn't realize at the time that Ben was so upset. Look at the poor little bug with his head hung low.. he had tears just streeming down his face. The Ref was so sweet with him.

Better luck next year Vikes....

Like The New Look???

2008-11-24T07:55:00.002-04:00

Hi All!
Hope you all like the New look on my site! I sure do! It is so warm and cozy!

Anyway, we've got a really busy week coming up and I will try to get some pictures up of some of the weeks festivities!

Today Aric has his last JV game against our biggest rival Waterford! It should be a good game!

Dave is on vacation this week and we have lots of projects around the house to get done. Right now he is working on Ryan's truck which lost it's transmission last week. They have been working on it all weekend. Hopefully today it will be done because it is starting to cut into my project time!!!

Wednesday we have a sitdown pre-game dinner for the Varsity Football team followed by the breakfast bright and early on Thanksgiving morning. Dave, Ryan and the other youth football coaches will be up at 4am cooking breakfast for 60!
The game is at 10am on Thanksgiving morning and I for one can NOT wait!! This is probably my favorite game of the entire season!!

We aren't having any company for Thanksgiving this year and because we will be so busy, I have ordered Thanksgiving dinner! It will come already cooked with ALL the trimmings! I will only have to make my pies. This way I don't have to run myself ragged cooking and can enjoy the day with my family.

Anyway, stay tuned for pictures this week!

Happy Thanksgiving!!
~Vicki

Christmas Cards...

2008-11-20T14:09:00.007-04:00

When doing your Christmas cards this year, take one card and send it to this address. If we pass this on and everyone sends one card, think of how many cards these soldiers will receive. No matter what your views on the war, politics etc... these fine men and women have sacrificed so much.

Turn up the volume on the computer and listen to the words to the song I have playing..

Lest we forget...

A Recovering American Soldier
c/o Walter Reed Army Medical Center
6900 Georgia Avenue,NW
Washington , D.C. 20307-5001

Peace...
Vicki

Beach Day!!!

2008-11-10T10:27:00.002-04:00

Yesterday the weather ws just beautiful, so I packd up David, Ben, Caroloine and Jake and we headed out to the beach for some fresh air and exercise!

We had a blast looking for shells, and we walked the entire legnth of the boardwalk and back for a total of 2 miles! Great exercise for everyone and because we were busy looking for shells, nobody seemed to notice that we walked as far and as long as we did!
Enjoy the photo's below... if you want to listen to it with sound... scroll to the bottom of the page first and turn off the music I have playing.

Have a Great Week everyone!!

Photo and video editing at www.OneTrueMedia.com

Halloween and PWS....

2008-11-02T09:59:00.006-04:00

Don't mix. No secret there.

Being that this is our 13 Halloween with PWS, I have run the gamut of how to handle it and I think this year I may just have outdone my self!

When David was little, I dressed him up and took him around with the other kids and worried the whole time how we would handle it once the food thing kicked in.

When he was 4 we gave up Trick or Treat and traded it in for family night where we would go for pizza and a movie or bowling etc.. and just pretend it wasn't Halloween. We have done this for the last few years successfully and the kids really enjoy it.

Our school still lets the elementary kids celebrate Halloween with a party and a costume parade (Don't think for a second that I haven't been fighting to get that fixed!!!) Last year I kept Ben and Caroline home and ignored it... this year that wasn't an option, so I sent them in.. Ben wore his catchers gear from baseball and went as a baseball player and Caroline wanted to be what else but a
Princess... I scrambled for a Princess outfit on Friday morning... can you tell my heart wasn't in it?? But came up empty for Caroline.. then I saw an old evening gown that was either from a wedding or from our cruise a few years ago... and had an idea... I put it on her and took the scissors to the bottom and Wallah... We had a princess dress!!! It had spaghetti straps so I cut and tied them so that it fit her and had her wear a white shirt under it... it was perfect!

The only thing left to tackle was Trick or Treat on Friday night... it so happened that Friday night was also the Homecoming Football game at the High School! I wasn't about to miss the game to go Trick or Treating with 3 kids who have PWS.

Soooo.. I came up with the idea of a "Reverse Trick or Treat" David, Ben, and Caroline all love to visit and give things to people... so I went out and bought 3 plastic pumpkins and filled them with Halloween Candy. Then I printed up a little flyer that looked like this:

We are participating in a “reverse” Trick or Treat tonight to raise awareness about Prader-Willi Syndrome. David, Ben, and Caroline Knopf were all born with PWS.
PWS typically causes low muscle tone, short stature if not treated with growth hormone, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Almost all have cognitive deficits and require special education. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”). The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues.

Please help us to spread awareness by visiting the web at www.pwsausa.org

Then I sent the 3 of them out into the crowd at the Football game ( I watched) to hand out candy and our little flyers. I promised them that if they handed out all the flyers and candy that I would save a piece of candy to eat!

They went to work handing out the candy and flyers.. Caroline even got $3 given to her... she thought that was pretty cool! Dave looked at me, shook his head and said.. " You are either insane or a genius... do you realize you just gave buckets of candy to kids with PWS?" I just smiled. It went off without a hitch and they collectively handed out 60 flyers about PWS to the crowd.
They were done by halftime and then sat and ate their piece of candy and were happy as can be. So am I.... there was no stress, no tantrums, and most of all no big bags of candy to contend with for weeks. Perhaps most of all there are 60 more people in this world who have heard about PWS!

Have a good week everyone!

Vicki

TOUCHDOWN!!

2008-11-01T10:34:00.003-03:00

This video clip is from a few weeks ago, Alex made a touchtown on a fumble recovery while out on Defense!! our friend Tim made us this awesome video! Way to go Alex!!!

Make an on-line slideshow at www.OneTrueMedia.com

Spirit Week Festivities!!

2008-10-31T12:42:00.005-03:00

It's Spirit week at the High School and the Homecoming Game is tonight, so take a quick look at my boys and their new look!!

TURN UP THE VOLUME!!

Photo and video editing at www.OneTrueMedia.com

Picking my Battles this morning...

2008-10-17T07:39:00.005-03:00

It's Friday...

I am up at 4:30 making 8 lunches... I got some really yummy Boars Head Chicken Breast at the Deli yesterday and was busily making sandwiches when David appeared behind me...

I don't get "good morning" or "Hi" or even "whats for breakfast?" Instead... I can hear the tone in his voice already... " MOM... IT'S FRIDAY.... I WANT TO BUY PIZZA!!" ugh. Friday.... the most dreaded day of the week when it comes to lunches.

All week long, I pack healthy lunches, lunches that are calorie conscience, I keep it creative using different rolls, wraps, veggies and spreads. I pack different snacks using fruit, and 100 calorie snacks, yogurts etc... Then, along comes Friday morning with Pizza for lunch Looming at me.

Part of me wants to take a stand and say "NO Pizza" but the other part of me sees my almost 14 year old son who desperately wants to be like everyone else... he is so good all the time... his weight is in control.. of course he wants pizza.

As I stand there with a piece of chicken breast posed over David's roll I can hear the urgency in his voice... " MOM... PIZZA!!!"

Something as simple as pizza for lunch at school, when you have a child with PWS is enough to turn the whole morning upside down.

I could say no,

I should say no...

I should just drop the piece of chicken on the roll in front of me and finish making his sandwich. School pizza... zero nutrition, high calories and fat... enough to undermine the entire day nutritionally. But yet, I stand there trying to decide... " MOM..PIZZA... PLEASE?" my hand moves back over the deli wrapper and I drop the chicken breast back in the wrapper. Behind me I hear " Yesss!... Thanks Mom!"

...and so the day begins.

It's a constant balancing act.. keeping a child with PWS healthy and their food intake in control and allowing them to be kids. David wants nothing more than to fit in, to be like everyone else. Food is such a HUGE part of our society and although our kids with PWS will NEVER have control when it comes to food, my hope is that I can offer my kids a balance of healthy eating so that they can enjoy some of the treats that come up in everyday life. It isn't easy and it isn't fair.. but it is our reality.

Have a good weekend everyone.

~Vicki

Wordless Wednesday...

2008-10-15T09:05:00.002-03:00

Bill Gates View on Life...

2008-10-08T08:03:00.006-03:00

As many of you may know....Over the past week, we have had quite a bit of turmoil on The Varsity Football team that Alex and Aric play on. 99% of the turmoil was created by kids and parents who have this "entitlist" attitude about not just football... but life in general. Many of these nay-sayers have even called for the Head Coaches job because their little precious isn't getting enough play time or isn't playing the position they want to... The problem is that this attitude will carry over into other parts of these kids lives! The following was sent to me this morning and it couldn't be more true!!

Love him or hate him, he sure hits the nail on the head with this! Bill Gates recently gave a speech at a High School about 11 things they did not and will not learn in school. He talks about how feel-good, politically correct teachings created a generation of kids with no concept of reality and how this concept set them up for failure in the real world.

Rule 1: Life is not fair - get used to it!

Rule 2 : The world won't care about your self-esteem. The world will expect you to accomplish something BEFORE you feel good about yourself.

Rule 3 : You will NOT make $60,000 a year right out of high school. You won't be a vice-president with a car phone until you earn both.

Rule 4 : If you think your teacher is tough, wait till you get a boss.

Rule 5 : Flipping burgers is not beneath your dignity. Your Grandparents had a different word for burger flipping: they called it opportunity.

Rule 6: If you mess up, it's not your parents' fault, so don't whine about your mistakes, learn from them.

Rule 7: Before you were born, your parents weren't as boring as they are now. They got that way from paying y our bills, cleaning your clothes and listening to you talk about how cool you thought you were. So before you save the rain forest from the parasites of your parent's generation, try delousing the closet in your own room.

Rule 8: Your school may have done away with winners and losers, but life HAS NOT. In some schools, they have abolished failing grades and they'll give you as MANY TIMES as you want to get the right answer. This doesn't bear the slightest resemblance to ANYTHING in real life.

Rule 9: Life is not divided into semesters. You don't get summers off and very few employers are interested in helping you FIND YOURSELF. Do that on your own time.

Rule 10: Television is NOT real life. In real life people actually have to leave the coffee shop and go to jobs.

Rule 11: Be nice to nerds. Chances are you'll end up working for one.

If you agree, pass it on. If you can read this - Thank a teacher!

Caroline Riding...

2008-09-27T15:08:00.004-03:00

Thought you all might enjoy some photo's of Caroline at the barn last week... She really loves her time at the barn and riding..

Picture Day...

2008-09-26T09:43:00.003-03:00

Sounds harmless enough right???

Not if you live in a house with 3 kids who have PWS and one who has "Hollister Syndrome"!

This morning started when I went into David's room to wake him up. I found him awake, dressed in one of Aric's wrinkled dress shirts with a ratty t-shirt under it, buttoned wrong, He was wearing a pair of Aric's dress pants which were not only about 6 inches too long.... I don't know how he stuffed his butt into them!!! The side pockets were bulging out and looking like the seems were ready to give way and David was frantically trying to button the shirt.
After a few minutes of arguing and me telling him I would not write a check for his pictures if he was wearing that outfit, I got him to put something appropriate on. One down.... 3 to go.

On to my child with "Hollister Syndrome" Jake. Let me explain the symptoms of " Hollister Syndrome" to you. "Hollister Syndrome" is an affliction that causes extreme anxiety and stress when the victim is not dressed head to toe in the latest fashions from Hollister. It causes extreme panic, profuse sweating, and the sudden urge to bolt across the hall to your older brothers room to rummage through his closet for an article of Hollister clothing that your friends haven't ever seen you in before! This action usually results in getting your butt kicked by your older bother for wearing his clothes... the problem is there is no known cure for "Hollister Syndrome" it can only be managed by frequent trips to the mall to visit the Hollister store!
So... that being explained... I got Jake (AKA: Jake-can-we-go-to-the-mall-Knopf) to take off the new Hollister dress shirt that belonged to Aric and put one of his on.... to which he proclaimed loudly that I was being sooooo mean.... everyone has seen him in this shirt... he has had his picture taken in this shirt before etc...
To add to the morning... it is pouring outside... so I drive Aric to the end of the driveway at 6:15, head back to the house to deal with Davids fashion issues and Jakes Hollister dilema, get them in the car at 6:45 and drive them to the bus in the pouring rain and head back to the house to get Ben and Caroline ready.
Ben was easy enough... he would wear the same dirty clothes for a week if I would let him... I found him an acceptable shirt and pointed him in the direction of the shower... had to hear the complaining... he hates to shower.
I couldn't find anything for Caroline to wear though... I don't' know where all her clothes have gone... well.. I do know... I am drowning in dirty laundry and she had nothing clean. After 10 minutes of searching I found her an outfit.

On to the next crisis of the morning... Bookfair! Ben and Caroline's classes are both scheduled to visit the bookfair at school today! They are both stuck on that and are obsessing about money for the bookfair.
I can't find where I have put the envelopes for the picture orders and spend 5 minutes looking for them! I found one and was able to make an envelope for Caroline.

With all the chaos of this morning, I had no time to make lunches for anyone... so I had to scramble for one dollar bills and make envelopes for all of them! It's a conspiracy I swear!

I figure this morning cost me $88 for pictures (4 $22 packages, one of the least expensive packages) $20 for bookfair ( $10 each for Ben and Caroline) and $29 for school lunches ( $10 each for Alex and Aric, $3 for Jake, and $2 each for David, Ben and Caroline) That is $139 this morning!!! Are you kidding me!??????!

Oh and did I mention that it is pouring outside? 3 trips to the car to drive the kids to the bus, 3 trips outside with the dog who won't go to the bathroom because it is raining... I'm done.

I have the next few hours to myself to try to put my house back together, do a batch of laundry and take a shower before I have to go pick David up at noon to take him to the orthodontist.

TGIF!!!
~Vicki

High School Football Week 1

2008-09-13T10:14:00.003-03:00

Last night was the first Varsity game. It was away in East Haven which is about a 45 minute drive from home. This year, I have 2 on the team... Aric #67 who plays center, and Alex #63 who plays D-end and is on Special teams both kick off and punt return.

The weather was not cooperating, and thank God I had arranged for a sitter for David, Ben and Caroline earlier in the week. Ben was ticked beyond ticked that he couldn't go to the game, he even refused to get out of the car when we dropped him off at my friends house. Usually he loves Mrs. Walkers but not last night... he wanted to go to the game. We stood our ground with him though and I am glad we did.

All the way to East Haven it poured. The sky was black, and it wasn't getting any better as we headed down I-95... We had Alex's girlfriend Kourtney with us and the 2 of us were planning how we would try to stay dry during the game!

We got to the stadium and the weather wasn't any better... we hung out in the car until just before the game started... Dave was worried that we wouldn't get a spot on the top row of the bleachers where we always like to stand... you get the best view point from up top! But with the weather, there was plenty of room for us and our umbrellas!

The rain came down with no signs of stopping and while our upper bodies stayed dry, my jeans were plastered to my legs and the water from the umbrella in front of me was pouring down on top of my shoes so I actually had puddles inside my shoes!!

It was well worth standing in the rain for 2 1/2 hours though... the Mighty Vikings won 34-0 and I got to see both Alex and Aric play in the season opener!

We ended the evening by heading back to East Lyme to Illiano's one of our favorite pizza places...good thing they are open late... as by the time the guys got there it was 11pm... we had ordered pizza for everyone and had some good laughs listening to their stories.

My feet were so wet... I actually left a puddle on the floor under the table!!!

It was a great start tot the season... sorry no pictures though.... my camera stayed home where it was nice and dry!!

This morning, Alex and Aric are off to watch game film at 9am, followed by weightlifting at 10am, Dave, Jake and David are at the youth field for Jake's practice.. Ben is ticked off again that he didn't get to go, but Dave told him that because his behavior was so bad lastnight that he had to miss practice this morning.... he went back to bed... which he needed to do anyway!!

Ryan just left for practice with the team he helps coach... I am off to tackle "MOUNT LAUNDRY" I may need climbing gear to find my washing machine.... ugh...

Jake's game is tomorrow afternoon... so hopefully the weather will be better for it and I can get some pictures.

Have a good weekend!!!

Vicki

Dance With Cinderella

2008-09-10T12:24:00.008-03:00

Many of you have heard of the tragedy that Christain musician Steven Crutis Chapman and the whole Chapman family has endured. This morning, their story was on The Early Show.
I sat glued to the TV with tears streaming down my face while watching it. What a wonderful Testament to "Family" they are... they have rallied around each other, supported each other, and are facing this head on together as a family.

As a mother, fear grips my heart just trying to wrap my brain around what they have gone through. Having teenage drivers myself, I can't imagine the horror this poor young man felt.
Having adopted 2 of my children, I can't begin to fathom what it would be like to lose one of them....
And yet....

This family has hope for the future... they are learning a " New Normal". Life goes on... they move on with broken hearts, but with the faith that one day... they will all be together again.

Please take a second to watch the video... and grab some tissues before you do.

Parents... hold you little ones a little tighter tonight when you put them to bed and thank God for another day with them.... you just never know what tomorrow will bring.

~Vicki

Watch CBS Videos Online

Pictures From The Last Few Weeks...

2008-09-09T06:13:00.007-03:00

Ben and Caroline 1st Day of School

Ben with his cast... he broke his thumb a few weeks ago.
My pretty little girl getting ready for her 1st day of 2nd grade!
This time of the year, its ALL about FOOTBALL here! Here is Dave with Jakes Team, He is the head coach this year.
Jakey... hangin' out, watiting for his game to start.
I LOVE this one.. Ben is the team manager.. this is Ben with the team running out to the 50 yardline at the beginning of the game... he is so intense about the game!
The Star Spangled Banner...
Ben having a pregame chat with the Ref's.

Jake #56 center (with his hand on the ball)

She Gets it!!

2008-09-05T06:16:00.002-03:00

I am in no way trying to start a Political debate here... politics are one of those things that I Rarely discuss with anyone in real life... but for the first time probably ever.... I feel some hope for the Political future of our country.

Quoted from Sarah Palin's speech, September 3, 2008, accepting the republican vice presidential nomination.

"And in April, my husband Todd and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.

That's how it is with us.

Our family has the same ups and downs as any other ... the same challenges and the same joys.

Sometimes even the greatest joys bring challenge.

And children with special needs inspire a special love.

To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House."

She is real people... Is that baby beautiful or what???

A Mayonnaise Jar and Two Cups of Coffee

2008-08-25T08:57:00.003-03:00

I found this today on a blog I visit and thought it was important to share....

A Mayonnaise Jar and Two Cups of Coffee.

When things in your life seem almost too much to handle, when 24 Hours in a day is not enough, remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.

The students laughed.

'Now,' said the professor, as the laughter subsided, I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and Favorite passions--things that if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, house, and car. The sand is everything else -- the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls.

The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. So... Pay attention to the things that are critical to your happiness. Play With your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. 'Take care of the golf balls first -- the things that Really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented. The professor smiled. 'I'm glad you asked'. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.

I Can't Believe it's August!!!

2008-08-19T10:06:00.003-03:00

Sorry I've been MIA... we have been flat out the last few weeks! Football Season starts August 1st here in "Viking Village" and I am just now coming up for a breath of air! For those who don't know, Dave and I run the Youth Football league in our town and have over 250 kids in the program! It is non stop the first few weeks with equipment fittings, and getting the league up and running for the season! Not to mention I am President of the High School Booster Club and practice at the High School started yesterday.

David is away at camp, he left a week ago and comes home this Saturday! 2 whole weeks respite has been wonderful! David has been increasingly difficult lately and this was a much needed break for all of us.
Dave and I have been looking at options for schools for David for next year as David will be going to High School and we are of the feeling that our local High School will not be an appropriate fit for him. It is a difficult decision to make, but one that will hopefully help David to have a better school experience.
He has been loving camp, I have talked to him a few times and he doesn't sound like he misses me much... however I did get this e-mail from him yesterday... it made me smile.

HI mom
I miss you mom.
I hope you have fun at home.
I Love mom.
we went bowling today, I had fun!
reggie the dog was special guest.
I like horsebackriding.
I like basketball I had fun!
Love, DAVID KNOPF

We go to pick him up on Saturday Morning... and this may sound terrible, but it's been such a nice break from his behaviors that part of me wishes that camp was another week long so he could come home and go right to school!

That's about it for here right now... I will try to get some pictures up in a few days.

Have a god week!
~Vicki

Mean People....

2008-07-29T09:03:00.009-03:00

Well... that about sums up the last 2 days!! how is it, that you can be going along, just minding your own business and Wham! Someone hits you right between the eyes with their ugliness??

Sunday night I log on to my computer to check my e-mail... I find a message saying I have a comment to my Prader-Willi Beauty Video... the comment reads like this:
Re%!#ds are awesome!" Ok... how could someone be so cold hearted that they could watch this video and make that kind of comment???

Make an on-line slideshow at www.OneTrueMedia.com

Ok.. after steaming about it for a few minutes, sending the anonymous poster (they left a blogger ID) a nasty response, and deleting the comment... I regained my composure and I do realize that there are stupid ignorant people in this world with hearts of stone.

So fast forward to yesterday... David had an orthodontist appointment... He is in the process of getting braces put on... yesterday he got the rest of the upper brackets put on... so far so good. Ok... so we sat for an hour in the waiting room waiting for him... I had Jake, Ben and Caroline with me... they were all so good! The appointment is FINALLY over and we are leaving... David has Medicaid that will cover the cost of the braces, but we have to go to U-CONN Dental School to use the Medicaid... The Dental School is at U-CONN John Dempsey Hospital.... it is a HUGE teaching Hospital. We are in the lobby and the boys are in front of me and Caroline coming off the escalator... we head through the lobby to the front doors where there is one set of doors to an alcove before you are actually outside. The boys were getting a little bit too far ahead of me, so a told them to wait up for us.. they were already in the alcove so, being boys they stopped right there and were playing with the automatic door sensor... no big deal... there was nobody in the alcove... Just about that time... I get sideswiped by an old lady (and I use that term loosely) who brushes by me and Caroline. She gets to the alcove where the boys are waiting... I am only steps behind her and telling the boys to move over when she grabs Ben by the back of the shoulders and SHOVES!!! him off to the side... as she does she hisses at him "Move... you aren't the only person in the WHOLE WORLD" I Flip out and say
EXCUSE ME????? Did you just put your hands on my son???? She continues to walk, so now my blood is boiling and Ben is looking completely confused.. so I continue in an elevated voice, to say " Did you just touch MY SON???" She turns a this point and tells me to get over it!!! OK... imagine my head spinning off my shoulders at this point. I continue to tell her that she is rude, she tells me Ben was in her way, again I tell her she is RUDE and that a simple EXCUSE ME would have worked that he is just a little boy. She then tells me that there is no excuse for his ill behavior and I should try to be a better parent. At this point we are out on the sidewalk in front of the hospital and have the complete attention of about 10 people including a security guard who approaches me to find out what is going on. I compose myself, put my head back on my shoulders and tell him what happened... at this point I realize my hands are shaking. He was very sympathetic and suggested we give her a minute to clear the parking lot before we head to our car. She leaves the parking lot a few minutes later in a big honkin' Mercedes... The security guard looks at me and says " I guess money doesn't buy good manners!" No kidding.

We're off to the beach today... hopefully with no more rude people encounters!!! Football Starts Friday!! Yikes!!!!

~Vicki

Caroline at Horse Camp..

2008-07-19T10:06:00.004-03:00

Caroline spent this week at Horse Camp at a stable near our house. She has absolutely loved it! The group was small (11 girls) and most of the girls she knows from school, the woman who ran the camp was very understanding of Special Needs as she has a son with epliepsy and diabetes.

Starting next week, Caroline will take a 1 hour a week private lesson... she is so excited!

Vacation.. Last Day-Night Photos...

2008-07-16T08:59:00.008-03:00

All good things must come to an end....
Enjoy pictures from our last afternoon and evening together.. We got in from the beach around 5 and our friend Adam ( Sarah was working) came over with Kyle and Olivia for dinner, campfire with S'mores and fireworks... it was an awesome way to spend our last night together.

In the morning we cleaned and packed and were out of the house by 9:30am... the week was a blur of activity and memories....

Kelsey with baby Olivia

Jake & David flexing for the camera..

A friendly game of backyard football

Ben and Kyle discussing strategy

This one is for Kelsey! Its kind of blurry, but this is Kels taking Jake down!

Kate with Sparklers

and hangin' by the campfire

Jake

Alex and his girlfriend Kourtney

Waiting for Adam's firweorks show to start!!

Jake & Kelsey

somewhere a village is missing its idiot!

Wilson... is that you???

2008-07-11T10:30:00.003-03:00

Remember the movie Castaway with Tom Hanks where he is stranded on an island and develops a relationship with a Volleyball he names Wilson?

Well.. here is our rendition of it.....

Here we have that great magic trick... guess which cup the rubber ball is under

Don't ask about the Big Sister bucket... we found it on the beach last year and it has become part of our collection... sick brother humor putting it on Jakes head for all to read!

I will get some more on the blog over the weekend... until then we are off to the beach for the day today!!

~Vicki

Vacation Pictures Sand Fun...

2008-07-09T08:24:00.003-03:00

You guys will have to bear with me the next few days... I will adventually get them all posted...

It wouldn't be a family vacation without a sand sculpture... this years model.... well.... the pictures speak for themselves!!! Enjoy....

Stay tuned tomorrow for "Wilson" from Castaway.....

Vacation updated and some pictures..

2008-07-07T10:09:00.005-03:00

Hi everyone!

We are back from our week at the beach... we had a wonderful time, and as predicted the week went by much to fast!

It's now Monday morning, Dave is back to work, and I have a huge list of things to do today, so this will be a short update and I will get more pictures together in a few days to share.

There were so many great things about this vacation, the house was awesome, the weather was perfect, the kids are all getting a little older so each year the dynamics change, the kids are more independent, and we all know each other so well now it's great to catch up and visit.

Mike, Renee, Kelsey and Kate (for those new... this is Ben's birthfamily) arrived on Monday night. We hit the beach on Tuesday morning and spent most of the week doing the same.

We had friends visit, Renee had a friend who moved here last year come for a visit, I got to meet Susan from the PWS list (and her mom) who's family has a house right down the street from us. Susan has 3 sweet little girls including Meghan who has PWS.. It was fun to put a face to her and meet her girls.

Oh... and lets not forget... we did an Adults night out... night this year. We even allowed Ryan to come with us seeing he is now 19 and really wanted to come with us. I hired a sitter to stay with the younger kids for the evening and we went to one of our favorite Italian Restaurants for a great dinner and then we headed over to Mohegan Sun for the Billy Joel concert!

So, we are headed into the arena with approximately 9 million other people and someone calls out Ryan's name. He reluctantly turned around, I am sure he was afraid to #1 be seen going into a Billy Joel concert ( he is an odd kid and loves all kinds of music) and #2 be seen going to Billy Joel with his parents! Anyway it turns out that a friend of his from the restaurant he used to work at now works at the casino and wanted to know if he wanted a floor seat for the concert!!! Yeah.. that's right... Ryan gets a floor seat and we sit in the nose bleed section! Gotta love his luck! He was able to sneak up and get Renee's camera that he wasn't supposed to have with him and get some really cool shots though!

I will write more later and share some more pictures including the first ever formal portraits we had done on Wednesday night... we had a photographer hired to come out to the beach and do a photo shoot... so stay tuned for those and pictures of fun in the sand...

for now enjoy these!

~Vicki

Ben and Kate

All of us just hanging at the beach

I love these two of Ben and Kate.. they have such a bond.
Ben with both his birthsisters, Kate and Kelsey

and last but not least... the Billy Joel Concert!

Family...

2008-06-24T09:34:00.004-03:00

It's that time of the year again... and everyone in the Knopf household can not wait! We leave on Saturday for a week at the beach! On Monday, Ben's birthfamily will join us at the beach house for our 6th annual Family Vacation! I know that they are as excited as we are about it!

We will spend long lazy days at the beach building sand castles & playing in the water, we will cook out in the evenings, go for long walks on the board walk, play board games, and of course charades... which has become a must every vacation... the girls get such a kick out of finding the girliest topics to get Big Dave to act out! We will make smores, & stay up too late catching up on life since last summers visit. We will laugh until our sides hurt and savor every second we all have together. The week will end all too soon with tearful goodbyes until next summer... another vacation, another beach... another time. We will pass that time with e-mails, pictures, and phone calls to stay in touch.

This is all normal to us... They are part of our family...we are part of theirs... our lives forever entangled through the miracle of Ben's adoption.

So I thought I would take a second to answer some of the many questions I am often asked about our choice to have a completely open adoption.

1. Was the adoption always open? Our adoption wasn't always "open" in the beginning we were as afraid of them as they were of us... we were afraid they would want him back, and they were afraid we wouldn't want him.

2.How did get in contact with eachother? Over 3 years time I wrote and sent pictures through our agency to pass to them. Through a very complicated series of events Renee and I were led to eachother by another birthmorther who also had a child with PWS who placed the baby for adoption... small, small world is all I can say.

3.How did you proceed after that initial contact? We started to e-mail eachother and a year later they flew east to meet us and see Ben for the first time in 3 years. I think we were all cautious that first year... not knowing if this was a good thing or if it would be a disaster. Obviously, it was a good thing and we had a great time getting to know them that first visit.

4. Isn't is weird or uncomfortable for all of you? It has never been weird or uncomfortable. We are most definitely Ben's Parents, Ben knows that and has never questioned it. For the first time a few months ago, he questioned whose tummy he grew in... see this post for the storyhttp://theknopfcrew.blogspot.com/2008/01/early-morning-conversations-with-ben.html I answered him honestly and it made perfect sense to him. We have always been honest with him and all the kids in regard to adoption. Honesty is the best policy.

5. How do you make it work? I think that to have a completely open relationship, all parties have to be honest and mature about the situation, we have had many heart to heart conversations about our feelings, hopes and fears for the future. We are honest and open in all aspects. No hidden agendas, no secrets.

it's the only way that this kind of a relationship is possible.
6. What about the other kids? Our oldest son Ryan has traveled west and spent a weekend with Renee and Mike at their house to just visit and to snowboard! The other kids all love them as well. The best way I can explain it is that its kind or like an Aunt, Uncle and Cousins situation the way everyone gets along and the way we all pitch in while we are vacationing to do the cooking, cleaning, watching the kids etc.

That's about all I can think of for now... if you have any questions for us, please feel free to ask... until then... we will be at the beach!

ARE YOU READY FOR SOME FOOTBALL?????

2008-06-23T08:20:00.005-03:00

Here are a few shots from our annual Maroon and White spring football game and picnic at the High School last week... as always, it was a balst and so great to see the guys out on the field again!! Enjoy!

The team getting ready

Alex #79 White

Aric #91 White

Aric #91

Coach T giving the post game talk.. notice Ben in the Mix!Picnic after the game... David in line for some good food!

10 Things I LOVE about Summer Vacation!

2008-06-17T08:03:00.003-03:00

SUMMER IS SOOOO CLOSE!!!
and I am so ready for it! Alex and Aric finish exams and have their last day on Friday, everyone else finishes next Monday! What does that mean to me??

1. Not having to get up at "0'dark thirty" every morning to make 8 lunches

2. Not having to drag tired kids who are much like their mom and are NOT Happy Morning People out of their beds every morning.

3. Not having to listen to the morning fights by said Not Happy Morning People about the constant Hot Water and dry towel shortage that plagues us daily!!

4. Not having to chase them out the door as the bus is sitting at the end of the driveway... or better yet having to chase the bus down so as not to have to drive to East Lyme at 6:30 to get a grumpy teenager to his first class on time.

5. No more homework, research papers, projects, book reports etc...

6. No more worrying about bedtimes!

7. BEACH TIME and LOTS of IT!!

8. Sleeping late... understand anything past 6:30, I consider LATE!

9. Hanging by the pool with the kids and their friends.

10. My house being busy with activity all day long... I love having the kids and their friends here!

I could go on all day, but can you tell I am so ready???

Today, we have our Annual Maroon and White Football Game at the High School. It marks the end of Spring Football... we are celebrating with a big cook out for the team and their parents after the game! Stay tuned for pictures tomorrow... it is always a great time! The game is kind of a teaser for what is to come... football season is right around the corner and anyone who knows us, knows how BIG that is in our house! The Youth program starts August 1st and the High school towards the end of August, but right now we are planning away for the season.

We also leave for the beach for a weeks vacation in a week and a half! I absolutely can't wait! A whole week with the beach right out our front door! We have a house rented and Ben's birthfamily will be joining us for our annual summer get away. This will be the 6th year that we have doen vacation together and it is something that we look forward to all year long!

So.. BRING ON THE HEAT!!! IT'S SUMMERTIME!!!

My 2 Favorite Pictures from last weekend...

2008-06-12T08:32:00.002-03:00

David with his soccer coach...

Special Olympics Summer Games 2008

2008-06-10T10:51:00.003-03:00

I hope you all enjoy the photo's from our weekend! David and Ben competed on the soccer team, and Jake participated as a unified player ( for those who don't know, a unified player is a player who does not have special needs that plays on the team or competes side by side with an athelete as a support person)

Aric ran as a unified partner on the track team, running the 4x100 relay and throwing shot put.

The soccer team came home with a 1st place Gold Metal in the 5-aside unified soccer team, Arics team came in second for shot put and 5th in the 4x100 relay.

Anyhow... turn up the sound and enjoy the show!!!

~Vicki

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Mental Health Day!!!

2008-06-04T08:08:00.006-03:00

Sorry I have not had time to write in lately... this time of the year is just crazy. We have been busy with Lacrosse, Spring Football ( YIPPEEE it's Starting!!!), Special Olympics, and several big around the house projects. I feel like I have been going a million miles an hour lately.

That being said... yesterday we decided to take a "mental health day". I kept David, Jake, Ben and Caroline out of school and we went with friends to 6 Flags for the day. We bought season passes this year, so it made for a fun and inexpensive day. The weather was great and the kids had a blast! We were there at 10am when the park opened and stayed until 6pm when they closed! The kids rode almost every ride in the park.. including Caroline who has become quite a daredevil!! She loves the roller coasters. Some of the high speed ones she isn't tall enough for (which is fine by me!!) but she loves the wooden ones and wants to ride again and again.

Ben is a little more cautious, but got into it after awhile and tried some new rides.

David though.... That kid... there isn't a ride fast enough, upside down enough, shake your guts out enough... for him... the faster, the scarier... the better for him!

Yesterday he and 2 friends rode on what is called a Skycoaster... It's basically a 180' free fall bungee jump... he LOVED it and went not once... but TWICE!! It just about made my heart stop to even watch it!! Check out the video I found of a similar ride to get the idea of what I am talking about...

We had a great time yesterday!

In other news, Today is Ryan's 19th Birthday... sigh... my baby is 19??? How the heck did that happen?

June 4, 1989

June 2008

Where has the time gone?? Happy Birthday Ryan!

We are gearing up for Special Olympics State Games this weekend, so stay tuned for some great pictures next week. We leave on Friday night and will be staying on campus at SCSU.. the kids are so excited to be staying in the dorms... It should be a fun weekend!

Have a great rest of the week!

Vicki

Paying Tribute...

2008-05-25T21:29:00.003-03:00

This Story ran in our local paper today. It is a strong reminder of all who have paid the ultimate price for the Freedom we all enjoy.

Being the Mother of a burn survivor,I can relate on some level to what this young Marine endured.

Please take a second tonight to say a prayer for all our soldiers and their families.

The young Marine came back from the war, with his toughest fight ahead of him.
Merlin German waged that battle in the quiet of a Texas hospital, far from the dusty road in Iraq where a bomb exploded, leaving him with burns over 97 percent of his body.
No one expected him to survive.
But for more than three years, he would not surrender. He endured more than 100 surgeries and procedures. He learned to live with pain, to stare at a stranger's face in the mirror. He learned to smile again, to joke, to make others laugh.
He became known as the “Miracle Man.”
But just when it seemed he would defy impossible odds, Sgt. Merlin German lost his last battle this spring - an unexpected final chapter in a story many imagined would have a happy ending.
”I think all of us had believed in some way, shape or form that he was invincible,” says Lt. Col. Evan Renz, who was German's surgeon and his friend. “He had beaten so many other operations. ... It just reminded us, he, too, was human.”
n n
It was near Ramadi, Iraq, on Feb. 21, 2005, that the roadside bomb detonated near German's Humvee, hurling him out of the turret and engulfing him in flames.
When Renz and other doctors at the burn unit at Brooke Army Medical Center in San Antonio first got word from Baghdad, they told his family he really didn't have a chance. The goal: Get him back to America so his loved ones could say goodbye.
But when German arrived four days later, doctors, amazed by how well he was doing, switched gears. “We were going to do everything known to science,” Renz says. “He was showing us he can survive.”
Doctors removed his burn wounds and covered him with artificial and cadaver skin. They also harvested small pieces of German's healthy skin, shipping them off to a lab where they were grown and sent back.
Doctors took skin from the few places he wasn't burned: the soles of his feet, the top of his head and small spots on his abdomen and left shoulder.
Once those areas healed, doctors repeated the task. Again and again.
”Sometimes I do think I can't do it,” German said last year in an Associated Press interview. “Then I think: Why not? I can do whatever I want.”
Renz witnessed his patient's good and bad days.
”Early on, he thought, 'This is ridiculous. Why am I doing this? Why am I working so hard?”' Renz recalls. “But every month or so, he'd say, 'I've licked it.' ... He was amazingly positive overall. ... He never complained. He'd just dig in and do it.”
Slowly, his determination paid off. He made enormous progress.
From a ventilator to breathing on his own.
From communicating with his eyes or a nod to talking.
From being confined to a hospital isolation bed with his arms and legs suspended - so his skin grafts would take - to moving into his own house and sleeping in his own bed.
Sometimes his repeated surgeries laid him up for days and he'd lose ground in his rehabilitation. But he'd always rebound. Even when he was hurting, he'd return to therapy - as long as he had his morning Red Bull energy drink.
”I can't remember a time where he said, 'I can't do it. I'm not going to try,'” says Sgt. Shane Elder, a rehabilitation therapy assistant.
That despite the constant reminders that he'd never be the same. The physical fitness buff who could run miles and do dozens of push-ups struggled, at first, just to sit up on the edge of his bed. The one-time saxophone player had lost his fingers. The Marine with the lady-killer smile now had a raw, ripple-scarred face.
Lt. Col. Grant Olbrich recalls a day in 2006 when he stopped by German's room and noticed he was crying softly. Olbrich, who heads a Marine patient affairs team at Brooke, says he sat with him awhile and asked: “What are you scared of?' He said, 'I'm afraid there will never be a woman who loves me.'”
Olbrich says that was the lowest he ever saw German, but even then “he didn't give up. ... He was unstoppable.”
His mother, Lourdes, remembers her son another way: “He was never really scared of anything.”
That toughness, says his brother, Ariel, showed up even when they were kids growing up in New York. Playing football, Merlin would announce: “Give me the ball. Nobody can knock me down.”
n n
In nearly 17 months in the hospital, Merlin German's “family” grew.
From the start, his parents, Lourdes and Hemery, were with him. They relocated to Texas. His mother helped feed and dress her son; they prayed together three, four times a day.
”She said she would never leave his side,” Ariel says. “She was his eyes, his ears, his feet, his everything.”
But many at the hospital also came to embrace German.
Norma Guerra, a public affairs spokeswoman who has a son in Iraq, became known as German's “Texas mom.”
She read him action-packed stories at his bedside and arranged to have a DVD player in his room so he could watch his favorite gangster movies.
She sewed him pillows embroidered with the Marine insignia. She helped him collect New York Yankees memorabilia and made sure he met every celebrity who stopped by - magician David Blaine became a friend, and President Bush visited.
”He was a huge part of me,” says Guerra, who had German and his parents over for Thanksgiving. “I remember him standing there talking to my older sister like he knew her forever.”
German liked to gently tease everyone about fashion - his sense of style, and their lack of it.
Guerra says he once joked: “I've been given a second chance. I think I was left here to teach all you people how to dress.”
Even at Brooke, he color-coordinated his caps and sneakers.
”If something did not match, if your blue jeans were the wrong shade of blue, he would definitely let you know. He loved his clothes,” recalls Staff Sgt. Victor Dominguez, a burn patient who says German also inspired him with his positive outlook.
German also was something of an entrepreneur. Back in high school, he attended his senior prom, not with a date but a giant bag of disposable cameras to make some quick cash from those who didn't have the foresight to bring their own.
At Brooke, he designed a T-shirt that he sometimes sold, sometimes gave away. On the front it read: “Got 3 percent chance of survival, what ya gonna do?” The back read, “A) Fight Through, b) Stay Strong, c) Overcome Because I Am a Warrior, d) All Of The Above.” D is circled.
Every time he cleared a hurdle, the staff at Brooke cheered him on.
When he first began walking, Guerra says, word spread in the hospital corridors. “People would say, 'Did you know Merlin took his first step? Did you know he took 10 steps?'” she recalls.
German, in turn, was asked by hospital staff to motivate other burn patients when they were down or not interested in therapy.
”I'd say, 'Hey, can you talk to this patient?' ... Merlin would come in ... and it was: Problem solved,” says Elder, the therapist. “The thing about him was there wasn't anything in the burn world that he hadn't been through. Nobody could say to him, 'You don't understand.”'
German understood, too, that burn patients deal with issues outside the hospital because of the way they look.
”When he saw a group of children in public, he was more concerned about what they might think,” says Renz, his surgeon. “He would work to make them comfortable with him.”
And kids adored him, including Elder's two young sons. German had a habit of buying them toys with the loudest, most obnoxious sounds - and presenting them with a mischievous smile.
He especially loved his nieces and nephews; the feelings were mutual. One niece remembered him on a Web site as being “real cool and funny” and advising her to “forget about having little boyfriends and buying hot phones” and instead, concentrate on her education.
But he was closest to his mother. When the hospital's Holiday Ball approached in 2006, German told Norma Guerra he wanted to surprise his mother by taking her for a twirl on the dance floor.
Guerra thought he was kidding. She knew it could be agony for him just to take a short walk or raise a scarred arm.
But she agreed to help, and they rehearsed for months, without his mother knowing. He chose a love song to be played for the dance: “Have I Told You Lately?” by Rod Stewart.
That night he donned his Marine dress blues and shiny black shoes - even though it hurt to wear them. When the time came, he took his mother in his arms and they glided across the dance floor.
Everyone stood and applauded. And everyone cried.
Clearly, it seemed, the courageous Marine was winning his long, hard battle.
”Some of the folks we lose - the fight to get better is too much,” Elder says. “But Merlin always came back. He had been through so much, but it was automatic. ... Merlin will be fine tomorrow. He'll be back in the game. That's what we always thought.”
n n
Merlin German died after routine surgery to add skin to his lower lip.
He was already planning his next operations - on his wrists and elbows. But Renz also says with all the stress German's body had been subjected to in recent years, “it was probably an unfair expectation that you can keep doing this over and over again and not have any problems.”
The cause of his death has not yet been determined.
”I may no more understand why he left us when he did than why he survived when he did,” Renz says. “I don't think I was meant to know.”
As people learned of his death last month, they flocked to his hospital room to pay their last respects: Doctors, nurses, therapists and others, many arriving from home, kept coming as Friday night faded into Saturday morning.
Merlin German was just 22.
He had so many dreams that will go unrealized: Becoming an FBI agent (he liked the way they dressed). Going to college. Starting a business. Even writing comedy.
But he did accomplish one major goal: He set up a foundation for burned children called “Merlin's Miracles,” to raise money so these kids could enjoy life, whether it was getting an air conditioner for their home or taking a trip to Disney World, a place he loved.
On a sunny April afternoon, German was buried among the giant oaks and Spanish moss of Florida National Cemetery in Bushnell. The chaplain remembered German as an indomitable Marine who never gave in to the enemy - or to his pain.
n n
Memorial Day is a time to remember the fallen with parades, tributes and stories.
Sgt. Joe Gonzales, a Marine liaison at Brooke, has a favorite story about Merlin German.
It was the day he and German's mother were walking in the hospital hallway. German was ahead, wearing an iPod, seemingly oblivious to everyone else.
Suddenly, he did a sidestep.
For a second, Gonzales worried German was about to fall. But no.
”He just started dancing out of nowhere. His mom looked at me. She shook her head. There he was with a big old smile. Regardless of his situation, he was still trying to enjoy life.”

By Sharon Cohen , Associated Press
Published on 5/25/2008

The Kitchen Door.....

2008-05-21T12:05:00.004-03:00

Hi All,

Sorry I haven't had much time to write in the last few days. After my post last week about finding all the wrappers under David's bed, we decided it was time to upgrade the kitchen door.

When David was around 4 we installed bi-fold closet doors on the entry to the kitchen and added a slide lock at the top to keep it secure. This has worked great for almost 10 years, but now that David is 5'2" tall and can reach the lock, the system was in need of upgrade.

Dave and I hit Lowes on Saturday night... this seems to be date night lately... Lowes/Home Depot and then dinner out... oh well. Anyway, we bought a "real" door and lockset and spent most of Sunday installing it. I have spent the last 2 days finishing the wood. I am beside myself excited at how it came out, and the kitchen is more secure than it ever has been. We spent the extra money and bought a keyless entry lock.. check out the pictures below.

The last 2 nights I have slept so soundly at night not worrying if someone is in the kitchen or not. It surprised me how much I was subconsciencely listening all the time for kitchen movement. The keypad even has an alarm system to alert you if incorrect codes are being tried, and after 4 attempts it doesn't allow you to try again for 15 minutes. There is a key override and the keys will be available in an emergency.

This should help in our efforts to keep them out of the kitchen! I guess I get overly excited about the strangest things.. but anyone who knows what we go through will surely understand!

It's Sandal Time!!!

2008-05-21T07:47:00.003-03:00

SANDAL SEASON IS UPON US!
THEREFORE, PLEASE RAISE YOUR BIG TOE & REPEAT AFTER ME...

I will always wear sandals that fit.
~*~
My toes will not hang overand touch the ground, nor will my heels spill over the backs. And the sides and tops of my feet will not pudge out between the straps.
~*~
I will go polish-free or vow to keep the polish fresh, intact and chip-free.I will not cheat and just touch up my big toe.
~*~
I will sand down any mounds of skin before they turn hard and yellow.
~*~
I will shave the hairs off my big toe.
~*~
I won't wear pantyhose even if my misinformed girlfriend, coworker,mother, sister tells me the toe seam really will stay under my toes if I tuck it there.
~*~
If a strap breaks, I won't duct-tape, pin, glue or tuck it back intoplace hoping it will stay put.
I will get my shoe fixed or toss it.
~*~
I will not live in corn denial; rather I will lean on my good friend Dr.Scholl's if my feet need him.
~*~
I will take my toe ring off toward the end of the day if my toes swell and begin to look like
Vienna sausages.
~*~
I will be brutally honest with my girlfriend/sister/coworker when she asks me if her feet are too ugly to wear sandals.
~*~
When wearing flip flops, I will actually flip and flop, making the correct noise while walking and I will swear NOT to slide or drag my feet while wearing them.
~*~
I will go to my local nail salon at least once per season andhave a real pedicure
(they are about $35 and worth EVERY penny!)

Thanks Angie for the great reminder!!!!

Out to win the war.. (on PWS)

2008-05-15T08:07:00.002-03:00

I have picked myself up by my bootstraps and continue the battle at hand.
I have been a mom for 19 years and a mom to a child with PWS for 13 1/2 years. This is not the first time by any means that David has gotten into food... he has been an active food seeker since he was 3 years old. I could write an entire book on the things we have caught him with over the years. I have learned over the years, that I will not win every food battle... he will win some of the time... but I will win the war... I will keep him from being obese, I will keep him from eating himself to death, I will keep him active so that he burns as many calories in a day as possible.. but I have to keep in mind that he is THE MASTER when it comes to sneaking.. he can go into what Dave and I call "stealth mode" and quickly and silently get ahold of something without us knowing... we also sometimes call it
"a drive by"... yes... he wins sometimes.... but what is important is that I win more... He knows he will get caught, but because of PWS he can not stop himself. Who else would eat 2 granola bars on the toilet and throw the wrappers in the bathroom trashcan?

I decided to share that photo with you all the other day because this is our life... every second of every day I am on guard.. our kitchen is locked, but in a house with 9 people, the doors get left open sometimes, food gets left out... this isn't Davids fault, it is ours for not protecting him from it. But to spite that David continues to do well.. his weight is good, he is healthy, he is generally happy, he has friends, he does well in school, and has so much to offer to everyone he meets, he has a kind heart, but he has no control when it comes to food... I MUST BE THAT CONTROL for him.

So... that being said... we keep on keepin' on... and we will win this... I am sure of it.
I will leave you with a quote that I love by Vince Lombardi...

"The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand."

Discouraged....

2008-05-13T13:04:00.002-03:00

I cleaned David's room this morning, stripped the bed and found this pile between the wall and his bed. Some of it I don't even know where he got...

We lock, we monitor, we watch and he still gets into food... you can't see in the picture, but the muffin wrappers are my weight watchers muffins that I buy as little treat for myself...

Life with PWS... it's not easy for him or me.

Another one growing up....

2008-05-11T18:58:00.002-03:00

Alex went to the Jr. Prom last night with his girlfriend Kourtney... thought I'd share a couple of pictures... they were so cute all dressed up... made my heart ache a little bit that anothr one of my babies is growing up...

I Believe...

2008-05-10T16:30:00.005-03:00

I Believe... That just because two people argue, it doesn't mean they don't love each other. And just because they don't argue, it doesn't mean they do love each other.

I Believe... That we don't have to change friends if we understand that friends change.

I Believe... That no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

I Believe... That true friendship continues to grow, even over the longest distance. Same goes for true love.

I Believe... That you can do something in an instant that will give you heartache for life.

I Believe... That it's taking me a long time to become the person I want to be.

I Believe... That you should always leave loved ones with loving words. It may be the last time you see them.

I Believe... That you can keep going long after you think you can't.

I Believe... That we are responsible for what we do, no matter how we feel.

I Believe... That either you control your attitude or it controls you.

I Believe... That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I Believe... That money is a lousy way of keeping score.

I Believe... That my best friend and I can do anything or nothing and have the best time.

I Believe... That sometimes the people you expect to kick you when you're down, will be the ones to help you get back up.

I Believe... That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I Believe... That maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

I Believe... That it isn't always enough, to be forgiven by others. sometimes, you have to learn to forgive yourself.

I Believe... That no matter how bad your heart is broken the world doesn't stop for your grief.

I Believe... That our background and circumstances may have influenced who we are, but, we are responsible for who we become.

I Believe... That you shouldn't be so eager to find out a secret. It could change your life Forever.

I Believe... Two people can look at the exact same thing and see something totally different.

I Believe... That your life can be changed in a matter of hours by people who don't even know you.

I Believe... That even when you think you have no more to give, when a friend cries out to you - you will find the strength to help.

I Believe... That credentials on the wall do not make you a decent human being.

I Believe... That the people you care about most in life are taken from you too soon.

I Believe... The happiest of people don't necessarily have the best of everything; they just make the most of everything.
~unknown~

Field Trips and Special Olympics...

2008-05-09T09:32:00.009-03:00

I have had the pleasure of chaparoning a couple of field trips this week andSpecial Olympics Regional Track Meet last Saturday... None of my kiddo's competed, but my 14 year-old Aric ran as a unified player in the 4X200 and their team came in 1st!
So... I just wanted to share a few pictures.

Last Friday I went with Caroline's 1st grade class to the Peabody Museum in New Haven..
Here is Caroline with her friends Nikki and Sophie... it was such a blast to have 3 sweet little girls to keep an eye on instead of a group of rowdy boys that I always seem to get!!!

Saturday was the regional Track Meet for Special Olympics. Aric ran as a unified partner in the 4X200 and their team came in 1st!

Here's Aric at the start of his leg of the relay...

A little team celebration at the finish line!

The winning team!!!

To end the week, yesterday I went with David's 7th grade class to Devils Hopyard and 8 Mile River to release the Salmon that they have raised in their classroom. The weather was very wet, but as you will see from the photo's it didn't put a damper on the days activities. They released the salmon and performed water tests, and environmental tests in the river. We stayed for a picnic lunch afterwards. It was a really fun day!

Here's David with his salmon in the cup, they were "floating" the cups to get the water temp the same in the cup as it was in the river.

Here's a great shot of the river... it was just so pretty, I had to share!

David with hip waders on getting a water sample from the middle of the river.

One of the many creatures that the kids found!

A group of the boys exploring.

Hope you enjoy the photo's... stay tunded next week for photo's of the 7th grade trip to Lake Compounce... we'll see how I do on the roller coasters!!! David is a Dare Devil so I am in for it!!!

Have a great weekend everyone!

~Vicki

PWS Awareness Month

2008-05-07T16:41:00.003-03:00

Please take a second and watch this video which was made by the mother of a young boy with PWS.
HELP US TO SPREAD THE WORD ABOUT PWS!!

Pop-Top Update

2008-05-03T10:07:00.003-03:00

Jakes class at Salem School has collected over 17lbs of Tabs for Shriners Hospital!

The collection effors are ongoing... please continue to save them and send them into us!

My in-laws and nephew are collecting where they live and have collected a significant amount of them too!

KEEP 'EM COMIN!!!!!!!

THANKS!

Happy Birthday Bear-Bear...

2008-05-01T08:12:00.006-03:00

Here's some pictures from Bens 9th Birthday yesterday.. He had a great day!

Because it was his Birthday, Jakes Lacrosse coachLet him help on the field.

We finished up the evening with Dinner at one of our favorite restaurants.. Illiano's! I surprised Ben by dropping off a cake earlier in the day that the staff brought out for us and sang Happy Birthday to him!

Our Night Time Routine...

2008-04-25T10:10:00.003-03:00

I've been doing all this for so long that it is "Normal" to me. The other night, I started the nighttime routine while I had a friend visiting. At first, she pretended not to notice all the medical supplies I was hauling out and lining up on the table. After a couple of minutes of watching me, she finally stopped mid conversation and said " Do you do this EVERY NIGHT?"
I was kind of surprised that she was so shocked when I answered yes to her question, then I got thinking about it... This is what it takes to keep David, Ben and Caroline healthy, so of course I do it every night... I don't even think about it... but it is far from a normal bedtime routine!

David gets 2 pills and his Growth Hormone shot... his is purple. Then I give him the bottle of Eucerin to give his scars and skin graft sites a good coating so they don't get dry.. the burn scars and graft scars don't have oil glands so they get very dry if they aren't moisturized 2 times a day.
Ben gets 1 pill and his Growth Hormone shot... his is yellow. Then he gets Nasonex spray in his nose, his albuterol inhaler, and just before he gets into bed he gets hooked up to his C-Pap machine... I usually don't have this out on the table, I brought it out for the picture though because it is part of the nightly ritual.
Caroline is my easy one... she gets 1 pill and her Growth Hormone Shot... hers is green.

When we are done with all of this, it's time for the rest of the bedtime routine.. showers, PJ's, brushing teeth, etc.

It got me thinking last night as I got their meds ready, how nice it would be for all of us if we didn't have to do this every single night of their lives.. if bedtime could just be filled with end of the day things like bedtime stories and evening prayers. But as I tucked my little girl into bed last night, she wrapped her arms around my neck like she does every night and said
"Love you Mom"... That makes it all worth it.

Wednesday Photo Day....

2008-04-23T09:31:00.011-03:00

Good Morning!
I have been promising pictures for over a week now, so scroll through and enjoy the photo's from the last week or so!

Celebrating Caroline's 7th Birthday at the zoo with her birthfamily

Ben in his catchers gear at baseball practice

Ben at Bat

Jake #56 at a Lacrosse Game

East Lyme Wins!!! 6-1

Caroline this morning before school in her new dress that Googrie and Pappa got her for her Birthday and the pocketbook that Bea sent her

Last but not least... the Germany crew!! Alex and Dave got home from an 11 day trip to Germany on Saturday night... they had such an awesome trip. Stay tuned for more photo's in upcoming days!