Christmas Letter 2009

Every year I write a Christmas Novella and send it out to a few hundred of our friends and family.  Its purpose each year is to get every one up to speed on all the important highlights of the last year, provide a bit of holiday cheer and a few giggles.  Each year the pressure mounts as more and more people keep asking "have you sent your letter out yet?"... "I can't wait to get your letter..." and my anxiety level rises as we stuff, stamp and seal up the letter and put it in the very able hands of our Post Master.  It was one thing when I though that no one really reads Christmas Letters, but recent requests now have me wondering the contrary...  So this year's letter has gone out in the mail and as always, I am feeling very anxious and hoping that it will be well received and will not disappoint.  [right now I am imagining that you are all naked and trying to  believe that no one really reads Christmas letters... just as a precaution I will also click my heals three times]  So here it is... enjoy!  Peace and Love to all this Holiday Season.

Merry Christmas One and All!

We hope this letter finds you happy, healthy and enjoying the holiday season.  For those of you who despise Christmas letters… brace yourself…grab a few Christmas cookies and a cup of holiday cheer and settle in for what promises to be one of the longest Christmas letters you will open this year. [insert evil-elf laughing here] Please note that you are under no obligation to read all the fine print… just check out the enclosed photo, insert “oohs” and “ahhs” and “aren’t they just the cutest boys ever” where appropriate and discard this letter before anyone else sees it.  Then, if needed, make whatever sort of reconciliation required to alleviate any guilt associated with this act of rebellion (com’on… you did just consider throwing out a Christmas letter and are sure to make Santa’s “Naughty” list)…perhaps it would be better to just shuffle it in with the junk mail and say  “honey, oh look, they only sent a picture this year…” However, don’t forget the accolades (they are some pretty cute kids)… and besides, Santa is watching. 

OK… We know what you have all been waiting to hear about… Sam’s super duper, incredible, amazing, over the moon, out of this world, once in a lifetime, waterproof-mascara worthy, magical, fantastic MAKE-A-WISH Trip to Disney World.   We drove down a few days early to visit family and stayed at Give Kids The World Village (the Make A Wish Resort). We got the VIP treatment all the way and the out-pouring of kindness is something we will never forget.  Our days were spent at the theme parks, meeting some new special friends and just doing our best to take it all in.  We went to Magic Kingdom, Epcot, Animal Kingdom, Hollywood Studios, Islands of Adventure (Universal Studios), Sea World and Aquatica (Sea World’s waterpark).  It was actually a challenge to pack all that and more into our week at Disney.  We hope to plan another, much less extravagant, visit to Disney in the next few years with the vow that whenever we are in the Orlando area we will make arrangements to volunteer at least one day at Give Kids The World Village.  The hard part will be explaining to the boys that next time we won’t have our special “magic passes” to allow us to bypass the long lines.  And as if a week at Disney was not enough…we then traveled to see family in North Carolina and West Virginia and even spent a whirlwind day in Washington DC before returning home (Sam wanted to talk to the President about his health care plan but he was unavailable at the time…LOL).  I think some of the most memorable highlights of our 2 week trip would be seeing the look on Sam’s face when he got to meet Cinderella and Princess Aurora, feeding the dolphins and sting rays at Sea World, watching Andrew battle Darth Vader in Jedi Training Academy and just spending time together as a family…OMG we packed so much in to our days and it was such a special vacation for all of us.  And we learned that with faith, trust and a little bit of pixie dust… dreams really do come true!   For more about Sam’s Wish trip, mundane ramblings about seemingly nothing, The Poncho Project, crazy antics of those Collins boys, pictures and even more pictures, you can visit our blog, Blessed and Lucky, at http://blessedandluckyarewe.blogspot.com

Andrew: The big man on campus just celebrated his 8^th birthday.  Eight is Great!  This year also holds many “I will when I am 8” promises, that although we are hoping to see through to fruition, find us feeling cautiously optimistic with our fingers crossed behind our backs.  We realize that we just need to be patient and have faith that one-day he will realize that veggies can co-exist with other foods and ketchup does NOT taste good on everything.  But alas, faith only makes things possible… not easy!  He is enjoying second grade and is doing well in school.  Andrew continues to receive speech therapy at school and works hard to master those darn “th” sounds and on being a more confident reader too.  He is still active in soccer, swimming and cub scouts and continues to be curious and inquisitive.  He often tells me “Mom, I am just a curious kid and that is why I ask a lot of questions”.  This year in his Religious Ed. Classes, he is working towards his First Communion in the spring.  Andrew is still very enthusiastic about his Lego creations and his creativity is impressive.  He has the most vivid and remarkable imagination and the things that he comes up with are truly splendid and extraordinary.  He is a visionary with a gift to see things that others do not and to create something out of seemingly random and unrelated bits and pieces.

Sam: I am thrilled to announce that this is the first year, EVER, in 7 years, that Sam has required NO surgeries or lengthy hospital stays. [insert happy dance here] He has been walking so much more and sometimes his pace is closer to a run. This year Sam played little league baseball for the Challengers.  The Challengers team is made up of all kids with special needs.  Although Sam did well with hitting and base running he preferred the position of grounds keeper… or goodwill ambassador.  He inspected every mud puddle, he made sure the quality of the diamond dust met his high standards and just for fun he rolled in the grass…just for fun.  Sam’s expressive vocabulary is also improving… not with words per say but he is getting his point across more clearly and he is using more augmentative tools.  We are thrilled with his choice making and determination to help us understand.  He has also been increasing interested in the Naughty Spot.  Sam will proudly do his time in the place-of-honor, grinning from ear to ear and giddy that he is finally getting the same privilege as his brothers.  Sam continues to love the water, music, swinging and tormenting his brothers every chance he gets.  We are in the process of getting Sam a special needs bike and we are so excited to see all the places he will go!

Sean: On the very day of his second birthday, the four-letter word “NO-NO” became an integral part of his vocabulary cache. He is extremely fond of cars, balls, Ba-Bob (Sponge Bob), torturing Garth (our cat) and pooh-poohs (trains/choo-choos).  I fear that our cat may be nearing the end of his nine- lives as a result of all the extra love and affection Sean gives him.  Poor Garth is sat upon, dragged somewhere, smothered, bear hugged and over-served treats on numerous occasions…daily! 3 for 3…Sean is getting speech therapy too.  Although his comprehension is above his age level, his expressive speech is below where it should be, however, I am sure that in no time flat he will be reciting Shakespearean quotes and conjugating verbs in Latin. Obviously he finds words overrated as he babbles complete volumes of incoherent ramblings that some how allow him to convey to you exactly what he wants.  As always, slow and steady wins the race…even for boys with only 46 chromosomes. Sean has also proven to be quite the climber and will fearlessly copy anything the big boys do… except sit on Santa’s lap.  However at the tender age of 2 he has already perfected the fine art of perusing the “Big Book” holiday catalog of toys so at very least Santa will be in the know…even if Sean won’t go anywhere near him.

Patrick: OK let’s just make this very clear…Pat will NEVER open his own Facebook account. Therefore, I will continue to be his go-between link to all his Facebook friends and diligently pass on all messages to my Facebook-aphobic husband.  In return for my services, I ask only that you pass along any embarrassing moments, skeletons or other note-worthy tidbits that I could add to my arsenal to be used at my discretion at some later time.  I will admit that Pat was a really good sport this year about dressing up as Dog Poop On A Shoe for Halloween and a Gingerbread Man Cookie for Christmas… and those pictures will be in circulation for years to come. [insert giggling here] Speaking of good sports, Pat is the head coach for Andrew’s soccer team, The Anacondas.  I think he really had fun in the Fall season and is looking forward to the spring.  Affectionately known as “President Pat”, he continues to be the active leader of our local parent Down syndrome support group, The DDC.  And if you ever need to reach him… he is probably in his new “bunker” at the WPD, fighting crime one pro-bono hour at a time.

RaeAnn:  I spend my days navigating land-minds (AKA matchbox cars and tiny Lego pieces) that no doubt will rip the skin off the bottom of your foot if stepped upon.  Secretly I giggle each time I hear that tell-tale crackle sound of a Lego getting sucked up in to the vacuum… too bad that the Y chromosome impedes ones ability to clean up after themselves without constant reminding and years and years of repetitive practice.  Boys will be boys!  So basically I have several years of band-aids on my heels to look forward to.  This year I did something I told myself I would never do… I took the plunge into the world of direct sales. I am now an Independent Demonstrator for Uppercase Living. (wanna know more… http://rjcollins.uppercaseliving.net) I also started the Poncho Project and continue to donate ponchos to kids in the hospital. Due to the article in Special Parent Magazine, I have gotten tons of requests for ponchos and have sent out several Poncho Kits so that others can sprinkle a bit of kindness too (if you have yet to receive a kit you requested… I haven’t forgotten…the list is just that long). Thank you to everyone who has donated fleece or who has made ponchos to donate to their local children’s hospital.  Scattering kindness is contagious and it grows far beyond what you may realize… it is not what you reap but what you sew (or knot…LOL). 

So as 2009 comes to a close, we once again reflect on all that is good and positive in our lives and we pause to count our blessings…twice!  And many of us will begin to focus on areas where we could use some improvement… I am not going to mention any names but “Somebody” could focus on lowering their cholesterol.  I foresee a life changing New Year’s Resolution in “Somebody’s” future… besides, the Lenten season is just around the corner, so perhaps God can intervene where medical intervention, free will and motivation have proven to be insufficient means to an end.  So if you see “Somebody” in a moment of weakness…tell him to put the donut down and reach for Cheerios instead.  And when making those life-changing resolutions, beware … the fast food industry has become an enabler, now offering fried options with zero trans-fat lulling us into a false sense of nutritional well-being.  Not to fear…the car manufacturers have got our backs!  Whether intentional or not, the fact that they are unable to stylishly produce a cup holder big enough to handle the largest to-go drink cup on even the slightest of turns does force us to at least consider choosing a smaller size drink, containing fewer calories, or subject ourselves to frequent detailing of our vehicles. I guess in the whole grand scheme of things it is probably best to just drink more water, avoid fast-food (except on long trips, or when failure to adequately prepare a meal is eminent, or just because French fries are the only veggie your child will consume without a major fight), show compassion toward others and in your spare time stage a peaceful sit-in demanding higher standards in cup holders.  Good luck with all resolutions you make!

Be safe.  Be happy.  Be healthy.  Be grateful. Be kind.  Be Blessed.

Be honest. Be warm.  Be compassionate.  Be original.  Believe.

Peace and love to all this holiday season… The Collins Family (pat, rae, andrew, sam & sean)

just too cute...

OK... this just has to be about the cutest thing ever.

When I first noticed Sam getting off the bus I was concerned, as I always am when I see that he is wearing something other than what I sent him to school wearing.  (this usually means that he had an accident, or he spilled something...)

So once we got inside the house I began striping off the layers to figure out what sort of "trouble" Sam had gotten himself into today.  Much to my surprise, Sam was wearing a special shirt that he made at school.  In the middle of the shirt Sam's footprint has been transformed into Rudolph the red-nosed reindeer!  Is this not the cutest thing ever??? I love it.

Here comes Santa Claus!

Every year The Down syndrome Development Council (The DDC), our local Down syndrome parent support group, hosts a Christmas party for our members.  We always have lots of food and goodies and crafts for the kids.... but we know the kids are all just waiting for the big guy to show up with his bag full of presents.

This was the second time Sam and Andrew got to visit with Santa this year.  The first meeting was at Sam's school and this was the report that followed:

Andrew:  Mom I think it is so cool that Sam's teacher is 
                 REALLY Mrs. Claus.

Me:  huh?


Andrew:  Ya, Mom.  I saw Santa drive away in a car with Sam's teacher!

Sam is particularly excited about Santa this year.  He was grinning from ear to ear.  Andrew made several crafts for Santa and presented them to him before whispering his list into Santa's ear.  You will notice that Sean is MIA.  Eventually, Santa was able to lure him close enough to receive his gift but there was absolutely no way Sean was going to sit on Santa's lap.  Sean's "snatch and grab" was much too fast to catch on film.  Maybe next year.

Andrew and Sam with Mr. St. Nick himself at the DDC Christmas party.  

the Poncho Project is growing...

I am so excited to see the Poncho Project grow beyond anything I imagined and to know that there will be so many kids that will benefit from the efforts of everyone involved.  So far I have sent out several poncho kits across the country to people who wanted to start up a poncho project to benefit their own local children's hospital.  Some have been touched by a child with special needs, some are parents or grandparents, some are just kind souls who just want to give something back and put a smile on child's face.

One of these poncho kits landed in the hands of my friend Sandy C.  She and some students from the Association of Clinical Lab Sciences at Ferris State University have been busy bees over the past several months working to raise funds and collect donations to make their poncho project a reality.

I am so excited to report that they have made over 40 ponchos and pillowcases/purses that they will be delivering to the Helen DeVos Children's Hospital in Grand Rapids this week!!!  I applaud their efforts to bring a bit of joy to others.  Thank you all so much.  It sure looks like they had a lot of fun but they will have even more fun when they see the looks on the kids faces!  

OMG... YOU GUYS ROCK!!!  Keep up the good work :)

Happy 7th Birthday Sam!

Today my chromosomally enhanced wonder boy turns 7... I cannot believe it.  You don't have to think about it very long to realize just how far he has come in these past 7 years... today truly is a day to celebrate!  To get a brief overview of how Sam got to where he is today... slow and steady wins the race!

From this 12/17/02... (Sam was 6 days old, 14 inches long and barely holding on to 2 pounds)

To this... 12/11/09 (Sam is 7 years old, 45" tall and 54 pounds)

We are so very proud of how far he has come and are excited to see all the places he will go.  Happy Birthday my sweet boy... I hope the world can truly see just how wonderful you are!

The Pink Glove Dance

This is great!  Check out the 

The Pink Glove Dance 

and support Breast Cancer awareness!

EIGHT...OMG...EIGHT!!!

It was a crazy birthday weekend for Andrew, who will turn 8 on the 24th.  8... EIGHT... OMG where has the time gone???  I cannot believe that he is 8!  The big 8  also marks the beginning of several changes that will be in store over the next year.  Andrew has informed us for some time now, that once he turned 8, he would eat more vegetables, keep his room clean without being asked and would be old enough to keep a tarantula or boa constrictor as a pet!  Although my fingers are crossed and my hopes are high, I am not going to hold my breath waiting for all the "I will do that when I am 8, Mom" promises but there is one thing that I am certain of... and it involves pets of the big, hairy and dangerous variety.  (Sorry, Buddy)  So we look forward to celebrating Andrew's EIGHT IS GREAT year.

Andrew had a sleep over with some friends and it was loud and crazy and lots of fun.  The boys played Wii and hyper-dash, built legos/bionicles, watched Star Trek and a Bionicles movie,  devoured pizza and ice cream cake and got grossed-out eating Bertie Bott's Every-Flavor Beans .... vomit, sardine, rotten egg, dirt, earthworm, soap, black pepper, buttered popcorn, cinnamon, grass, blueberry, ear wax, booger and buttered toast to name a few.  They also ate cotton candy gum that turned their mouth's bright blue!  Yes, pictures will follow soon!

We are excited to celebrate this very special day.  Nov. 24th at 7:35am will mark 8 years that Andrew decided to arrive 5 weeks early, while we were visiting family in another state, and forever change our lives for the better.  Andrew is one amazing kid and an incredible big brother... we are truly blessed.  Below are a few pics of Andrew throughout the past 8 amazing years (birthday pics to follow).

Happy Birthday... Andrew!  We BIG LOVE YOU!

Wordless WISH Wednesday

A bike for Sam

Taking a brief pause between yet another Make-A-Wish post, I felt that this is a very note worthy sidestep. We have been on a search for a special needs bike for Sam. Every time we go to the park, Sam tries to hijack some kids' bike. Of course he does not have the balance, coordination, motor planning or other basic skills needed to sit on a bike without support not to mention actually ride a bike.

However, today I stand corrected.

We have been looking to get him a Discovery Bike by Freedom Concepts. This bike is like the "Cadillac" of special needs bikes and with all the bells and whistles also comes a very large price tag (but seriously... doesn't EVERY THING for special needs kids cost 5x more than it does for the general population???) but it is exactly what Sam needs. So we are in the process of working with our insurance to see if they will help us out with this $3,900.00 adaptive mobility device (if you want insurance to cover it you gotta know the lingo). So far so good *** please keep your fingers crossed***

So I found The Bike Rack , home of Creative Mobility and to my absolute joy I found that they are located in St. Charles IL... about an hour away. Check out the "hallmark heroes" video about Hal and the work they are doing over at the Bike Rack...but have your tissues ready. I had a long conversation with Hal Honeyman over the phone and made arrangements to meet with him and actually put Sam on a Discovery Bike to see if this was indeed the bike for him.

**kleenex warning

So we drive up and my excitement mounts as I see a variety of special needs bikes on display both outside and inside the show room. A few minutes later Sam is on a bike... wait.... SAM IS RIDING A BIKE.... he is actually riding this bike in the parking lot. At this point I am squealing and jumping up and down and I think I actually briefly reached an octave that only wild dogs could hear. Yes, Sam was actually riding this bike all by himself. Thankfully the Discovery Bike has a rear breaking and steering system that allows us to control him a bit and help him learn to navigate. I LOVE THIS BIKE, I LOVE HAL HONEYMAN AND I LOVE THE BIKE RACK!

We hope to hear back soon from our insurance. They requested more information and I am giving them more than they will know what to do with to support my efforts.

more friends...

On our very last day we checked out of our villa and headed to Aquatica... Sea World's water park. It was Amazing. This is a family picture that was taken right inside the park. There is a water slide that shoots you down through a tube that goes right through a dolphin pool. I was going too fast to really see them but Andrew informed me later that if you sit up you go slower and can actually see them swimming above and around you.

When we went to Sea World we were able to take advantage of some special things that we may have otherwise passed up because of $$$ but our Make-A-Wish and GKTW passes got us the red carpet treatment all the way. Not only did the boys get free trays of fish for the dolphins and Sting Rays but we again were escorted to the front of the line and we were treated to some special dolphin introductions. This was something the boys were really looking forward too and it was incredible. Feeding the dolphins was one of the things that was truly a highlight and something the boys will never forget...Thank you so much Make-A-Wish. We were not only able to feed the dolphins but we got to touch them too. One of the trainers, (taking notice that we were a Wish family) used a whistle to call several dolphins over to our area and to have one come up on this ledge right by the wall, sit there and hold his tail up so that Sam could touch him. I think the many of the dolphins were moving too fast for Sam to really see them well so this was a nice treat so he could actually interact with them. We also got to feed the sting rays

They gave each of the boys a tray of fish to feed the dolphins... Sam immediately tossed the entire bowl right into the water... bowl and all. The trainer had to pluck it out of the water but then gave him another tray. You can't see her in the picture but the trainer has called this dolphin over and is asking him to stay there and wait for Sam to put the fish in his mougt and the surprised look on Sam's face is because the dolphin is talking to him too.

Same dolphin but with out the trainer instructing him... he was a bit more eager to snatch the fish away from Andrew.

This is one of the dolphins the trainer called over so that Sam could get a closer look.

These dolphins were chirping at us... Sam loved it

This is a pic of Sam waiting for the Shamu show.

A few new friends...

These are pics of a few new friends we met. With our special passes from Make-A-Wish and Give Kids the World we were able to jump right to the front of all the character lines. I felt a little bad about it at first... the lines were always really long and so a few times we just got into the regular line with everyone else. However when anyone saw our badges they would escort us to the front of the line. One of the character helpers told me...

"you guys have to wait for enough in your lives and have had so many more challenges... you have a special pass for a reason and so no matter what anyone says you enjoy yourselves here, you are our special guests and special guests never wait... everyone here (at the parks) is always on the look out for your pass and they want to make your experience here one to remember and enjoyable and this is just a little thing that we can do to make things easier for our special guests. So please don't wait in lines anymore... Mickey said so"

Stitch stole Andrew's ice cream cone!

We actually had to wake Sam up several times during his visit with Woody and Jesse. It was such a hot day and we had a late night the night before. Sam just couldn't keep his eyes open. But they were very sweet.

Sam loved Goofy and Donald. He gave them both kisses.

Jedi Training Academy was sooooo cool. Andrew got to battle Darth Vader. Sean was a bit more leary of him but they all had a fun.

Oh how Sean Love's Cars. I thought he would be so excited to Lightning McQueen and Mater, but seconds after this pic was taken he fled the scene.

All you need is faith, trust and little bit of pixie dust. (notice Tinkerbell in our hands) We were all soaking wet from the rain but I think the picture turn out really cute.

Sam enjoyed meeting Buzz Light Year. We caught him just as it started raining.... it was a down pour. Andrew and Sean played in the rain while Sam met with Buzz. People kept asking us if we needed an umbrella... I said "no... it is snowing in Chicago... the rain is fabulous!"

OMG... the Princesses.

Sam was ga-ga over the Princesses. Picture this... I am soaking wet and standing in line with all these other mom's dressed to the hilt with their daughters in gowns and wings and all glittery and here I am with Sam. We of course got to go ahead of the line and I think they thought I was there to see the princesses until they saw Sam's reaction. He ran right up to the bench and called Cinderella over to sit next to him. He was so bashful at first and grinned from ear to ear. He gave her a big hug and was so excited when she signed his book.

Then he saw Princess Aurora (Sleeping Beauty). He danced with her for awhile then took his seat next to her on the bench. I thought he was going to climb right into her lap. H blew her kisses and could barely keep his hands to himself. When it was time to leave I took Sam's hand and said "Let's go Sam" and in his clearest most assertive voice he said "NOOOOOOO" and then looked back at Aurora and batted his eyes.

He was not so thrilled with Wolverine but I think he was still a bit scared after the interactive Spiderman ride.

Sam and Niko

Sam really enjoyed Goofy each time he saw him. This was a special visit at Give Kids the World. Sam danced with him and gave him kisses.

Pluto also made a big impression. I would be willing to bet that Sam appears in several other families pictures with Pluto... I just couldn't keep him away. This was also taken at GKTW. The private meetings that they have set up each morning are so special. Sam got to spend more time with them and you could tell he was really enjoying himself.

I absolutely love this picture!

Big kisses for Mickey (at GKTW)

Special meeting with Mickey and Minnie.