Don't Blink...

The Kenny Chesney song "Don't Blink" came on the radio the other day and it has been stuck in my head ever since. Life lately seems to run like the lyrics of the song... ~Don't Blink...Just like that you're six years old and you take a nap and you wake up and you're 25 and your high school sweetheart becomes your wife ~Dont Blink... You just might miss your babies growing like mine did, turning into moms and dads... Next thing you know your better half of 50 years is there in bed and you're praying God takes you instead... Trust me friend a hundred years goes faster than you think.... Don't Blink.

Yeah... Seams every time I blink these days I fast forward so quickly it feels like a blur. My oldest 3 boys don't live at home any more, David is 18 and is moving quickly into the next phase of his life... he is a senior in High School, he works, he has staff to take him places and do things with him.. we are starting to think aboutr what his adult life is going to look like etc... Jake is a High school Junior... he is always on the go and Ben and Caroline are both in Midddle school... Don't Blink.

  It seems like yesterday that my house was full, the dinner table was crowded, the laundy pile was huge... now most Saturday nights its me and Dave maybe David, and Ben and Caroline. The dinner table is all but empty and I don't know how much food to cook... I am used to cooking for a small army of boys... now there are 5 of us most nights and 3 with PWS... I throw so much food away!! Part of me is enjoying the change of pace, looking forward to the next phase when maybe just maybe it is just me and Dave again... and another part of me really really misses the days when my house was full of activity and the crazyness that comes with having 7 kids in the house...  Don't Blink.

  It is a parents job to raise their children to be self sufficient and independent. I have done my job if they spread their wings and fly... but it also leaves a hole in me where they used to be. I used to go to the grocery store often with all 7 of them in tow. I never thought a thing of it. We had a routine, everyone had a job and there was usually someone who had a problem or a meltdown or an issue... its just how we rolled. Now, when I am wondering the isles of the gorcery store all by myself and I come across a mom navigatging the store with several young children I look at her with envy missing those days. Missing the chaos. Missing everything that goes with it.... Don't Blink.

All I can offer to those of you who still have young ones at home is enjoy it. It goes by in the blink of an eye.

A Better World: Rare Disorder Changes the Lives of this Family - WFSB 3 Connecticut

A Better World: Rare Disorder Changes the Lives of this Family - WFSB 3 Connecticut

The Knopfs visit Channel 3... Better Ct!

Hi Everyone! I know.. It's been forever since I have written here... I promise to stRt trying to update things more often! Tomorrow Ben, Caroline, and I will travel to Rock Hill Ct to be on the Better Ct show on channel 3! We had a film crew out to our house last week to tell our story! I am hopingi will be able to post a link to then story here, but if you are local it will air on WFSB Channel 3 here in Ct tomorrow at 3pm! Tune in! I promise updates on things soon.... Vicki

Things Don't Always Go As Planned...

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....

"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....

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???

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!

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

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!!!

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

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!!!

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...

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...

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...

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...

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....

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!!"

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