Annual Nurse/Caregiver Cookie Exchange Party

We all enjoyed our annual cookie exchange party today--it was definitely fun and a success!  Everyone came that RSVP'd so there were eleven of us plus the boys so we definitely had a full house.

Everyone brought a gift for the Milton Family Community Center.  See...!  Gene will bring them over sometime this week.  I'm sure many kids will have smiles on their faces this Christmas morning unwrapping some of these cool gifts!

We had some good munchies:  Christmas Punch (cranberry juice, lemonade andginger ale), crackers, cheese and pepperoni, spanakopita, and Red Velvet cupcakes with cream cheese frosting and red and green sugar.

Of course we also had M&Ms to eat as well as use as Bingo markers in our Christmas Bingo games.  Andrea won the TWO games of Bingo! 

Then we did our cookie exchange.  There's always a little bit of confusion but we all end up with beautiful containers of cookies.  Meghan made SnickerDoodles with Rolos in the middle.  Nancy L make log cookies with chocolate and almonds.  Nancy H made her festive spritz cookies.  Aunt Chris made some sugar cookies with sprinkles, but didn't make quite enough so she picked up some ginger bread men from Madeline's to make up the difference :)   Julia made SnickerDoodles.  Julia C made star sugar cookies that were decorated beautifully.  Andrea made the all time favorite peanut butter cookies with the Hershey's kiss.  I made all-spice thumb print cookies with raspberry in the center.  Lauren made Andes Mint Chocolate chip cookies.  Julie made white chocolate macadamia nut cookies.   Staci made peanut butter cup truffles. 

Punch, cheese, crackers and pepperoni, cupcakes and pineapple chunks

Special treat table

Colin with eyes squeezed shut and Nurse Julie

Santa Casey

Indulging in some yummy food.

We still had time to play the memory tray game.  I tried to change it up a little bit and everyone got mad at me.  After I had them stare at the items on the tray (there were about 16) I tried to have everyone sing a round of Jingle Bells in an attempt to distract them a bit and make it harder to remember, but most everyone bailed and started writing anyway!  Next year I won't give them their pencils and paper until I'm totally ready for them to start, so pffft on them!

Guess who won the tray game??  Yes, Julia O'Neill.  She's won every year that we've done this game.   Nine was the average items that were remembered with 6 being the lowest.  I won't rat out that person publically :).  Julia won by remembering 12 items!

A few people had to leave while some of us stayed and chatted.

Meghan, our 'old' night nurse stayed awhile and spent some quality time with the boys and I know they appreciated that. 

It was good to have everyone together, although we were minus a few.  It's pretty unusual for us to be able to sit and enjoy each others company; we have a good group of people that take care of the boys!

All the while, though, I had Connie and Justin on my mind.  Daniel, too, of course, although I know he's in a safe, happy place.  It's just very hard to go on with life and do enjoyable things when people you care about very much are hurting so badly.

Daniel's Service

What to say about a 6-year-olds memorial service?  I'm glad Chris and I went.  I'm glad Connie and Justin and family had a lot of support.   There were two books read that were very fitting and touching.  Daniel's cousin, Heather, had prepared a beautiful tribute to him and read it so well.  I'm amazed at how composed she was.  Justin tried to play the memorial video that MJ created but the wifi was in and out so only part of it was shown.

The room looked 'nice'.  I don't know how to describe it but I'll put some pictures below.  I haven't asked Connie and Justin if it's okay to post but I think they'll be okay with it.  Connie was fine with me taking pictures after we set up.  Chris and I had arrived at the funeral home early so we were able to greet Connie and Justin and help them put some of Daniel's favorite things around the room.  There were stuffed animals, Daniel's doctor costume, a kite that his grandpa gave him, lots of pictures, and a couple of photo albums, books, toy cars, hats and sunglasses.  Daniels urn was up on the altar with some photos of him and beautiful flower arrangements and some blue balloons.

Lots of tears were shed and there were a few chuckles, too.

Afterwards, there was a gathering at Connie and Justin's house so we headed over there.   Lots of chatting and food and just being supportive by being there.  I know Connie and Justin were exhausted but they hung in there--I'm sure they collapsed when most of the people had gone.

So Aunt Chris and I did okay.  Thank goodness for the GPS!  It was perfect.  Springfield is a very odd town.  It was big into industry back in the day but now there are many HUGE factories just crumbling.  The streets are winding and twisty and there are lots of hills.

We made it home by 6:17.  We were supposed to be home by 6:00 according to the GPS's first calculations, but there was lots of fog so Chris drove under the speed limit.

.................

While were were gone, the boys had a good day.   Casey had a shower.  Nancy H and Gene got the boys dressed and loaded up in their chairs and they were off to the Christmas Spectacular at the Essex Alliance Church.  Casey, especially, was very excited that there was a production this year.  Last year they took a year off.  Thank you to PJ, who always makes sure we get tickets and meets us there and hangs out with the boys.  I know the boys enjoyed themselves very much and they behaved themselves, too.  Casey got a little loud when the pastor was doing some talking but Casey just wanted more action  :)

After they came home, Nancy played some Poptropica with Colin while Casey flipped some channels.  Aunt Julia read some Christmas books with him, too.  Thank you, Julia for coming and fairy-izing.  I'd still be behind if you hadn't helped.

Tomorrow will be a tough day.  Chris and I are driving down to Springfield to attend Daniel's memorial celebration.  I hope we can bring some comfort to Connie and Justin by being there.  I hope I can stay strong enough to bring them this comfort.

Gene and Nurse Nancy H will be going to the Christmas Spectacular with the boys.  I am a nervous wreck about leaving them.  I hope the two of them can handle the outing--it's very unusual for me not to be there or to at least be there to get them in their chairs with all their equipment and food and all that.  I'll just have to let it go and believe that they will remember everything and that Colin will have his monitor and be buckled in properly and that they'll be warm enough and have enough spit cloths :)

And, of course we're nervous about the weather.  'They' are calling for some rain or snow or possibly some sleet in the AM.  Hopefully, it won't happen at all or it will be done before we leave.  And, Aunt Chris and I aren't the best navigators so I'm nervous that we'll get lost.

So, if you can keep us in your thoughts/prayers for tomorrow, that would be appreciated!

 A celebration of life for Daniel Louis Sacripante will be Saturday December 8th at 2 PM, Davis Memorial Chapel, 99 Summer St., Springfield, VT 05156. Also, on Saturday December 15th ath Trinity Episcopal Church, 1579 Northern Blvd. Roslyn,

N.Y. Justin Sacripante and Connie Sacripante are requesting in the lieu of flowers any donations to benefit his friends, Casey and Colin O'Neill "Wheels for O'Neills" both boys have SMA Type 1,and need a larger van. Donations can be sent to www.DanielsHope.com or mailed to 5 Cooper, Springfield VT 05156. Any additional monies raised will benefit Sophia's Cure for research for SMA.

Historic Day for SMA Gene Therapy!

*****Historic day for the SMA community today:

There was  meeting at National Institutes of Health, for the Recombinant DNA Advisory Committee in Washington and SMA was the topic.  What does that mean?  I'm not quite understanding it all myself, but the best way I can describe it is that there was a presentation to the committee declaring why they should approve an FDA submission for the first human clinical trials in gene therapy.  The presentation was given by The Research Institute at Nationwide Children's Hospital and Ohio State University where ground breaking research is taking place.  This is one important step out of several to get this program moving ahead.   Several SMA families had the opportunity to speak as well and,  I understand, were quite moving.  I wish I had been able to view the live feed, but I had a Casey meeting :)  Thank you to the parents who spoke for all of us.  And, the answer was a unanimous YES!   If I see a blog that describes it better, I will add the post here.   Here are the parents and their kids that they 'brought' to the meeting!

"Call me, Daniel"

I am very thankful for Daniel being with me in spirit.  Yesterday, our buddy unexpectedly passed away from complications from Spinal Muscular Atrophy (SMA).  He was 6 years old.  I love him like he was my own child--there was nothing I wouldn't have done for him.  His parents, Connie and Justin, doted on him.  They didn't make any decision, small or large, without thinking of how it would affect Daniel first.  They are super parents.   I can't even fathom how they will get through each day without 'Dan the Man.' 

I truly do think Daniel is with me in spirit.   My heart wants to stop and grow cold with anger and grief but this little fluttering spirit is telling me, "NO"!   The fluttering is in my heart and I know it's Daniel.  He's squeezing my heart and telling it to keep beating, keep growing, keep loving.   I sense he wants me to put 110% of myself into continuing to give Casey and Colin the best life possible.  He wants me to make every second of every day count and to make sure they know how much they are loved and how special they are.  I can do that for my Daniel.

I love you Connie, Justin and Daniel!

PS.  My Title, "Call me, Daniel" is from Daniel's talent act at Camp Inspiration.  He and his counselors did their rendition of "Call me, Maybe" by Carly Rae Jepsen.

This is the last picture I took of Daniel and my guys this July.  

Playing Splashy the Whale!

The boys!

Our families at Camp Inspiration, June 2012

Back in my bed

Ahhh, it was nice to sleep in my own bed last night.  Gene is finally feeling better and he's been on Zpack for 24 hours.  I Lysoled the room and washed the sheets and comforter in hot water.  It was nice sleeping in the aunt room for a few days but glad to be back to normal.  Very relieved that myself, nor the boys got his yucky bug.  He had a super killer sore throat and had aches and some fevers and was grumpy and tired.