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.