Baby Steps!

Today I took my first baby steps toward the Wonderful World of Disney. Or course because it was baby steps I only went to the "Marketplace" at Downtown Disney. It took me a few minutes to control my stomach and tears. I stayed in my car and texted Rhiannon and Sybil, then became calm enough to make the walk over to the big Disney store. I walked in, then walked out and went to Mickey's Pantry instead. There I shopped for my remodeled kitchen. It was a strange feeling being there. Sadness instead of the joy I use to feel. It just wasn't the "Happiest place on earth" anymore. I really thought that maybe one day I could take my M and M's to WDW. Now.....I know I will not be doing that. I think I will continue my shopping on line and maybe pick a different place to take M and M here in south Florida. I like the memories I have of taking Sammy to WDW much better than any new memories we could make there.

It doesn't get any easier....we just get better at it. (sometimes) God is good!

I wish.........

Today like everyday is a day of wishing.....I wish Sammy could walk the beaches with me and find shells.....I wish Sammy could feel the 80 degree sunny day with me! I wish I could feel Sammy’s hug of thanks for every little thing I did..................I wish I could see Sammy’s face light up when his dad walks through the door............I wish Sammy could sit and have lunch with me........I would gladly go through McDonald’s drive up for a happy meal!..............I wish I could here Sammy’s off key rendition of You are my Sunshine!............I wish I could sit and watch for the 3rd or 4th time today, Happy Gilmore or What about Bob?.......................I wish I could here Sammy say I love you mom.....I wish we could go golfing together and hear Sammy say Nice Shot!......I wish I could watch Sammy serve mass.........I wish I could dance with my Prince Lillip!...........I wish I could watch Sammy recreate Disney Studio’s “Beauty and the Beast” over and over again...............I wish I could smell and kiss Sammy’s belly.............I wish I could do Christmas shopping for Sammy...............I wish..................

I know Sammy’s happiness in heaven is a depth of happiness, we can not come close to feeling here on earth but I am so selfish.......I wish I could bring him back!!

It doesn't get any easier. You just get better at it. God is good.

Sam and Sherry

Lately I have had Sammy’s school days with Sherry on my mind. Even though Sammy loved school with Sherry he did not love getting up in the mornings! Most mornings I would be “nudging” Sammy awake as Sherry was coming through the garage to the kitchen door! A very sleepy Sammy would be trying to hide his head in the pillow. After a few more tickles and pokes he would slowly make his way to the bathroom, where he would start his morning routine. He would look at his “Start your day strip”, brush his teeth, move that picture to the done spot and continue.....Teeth, check....go to the bathroom, check.......wash my face and hands, check.........say my prayers, check.......Get dressed, check......Go to school!!! By the time he got to the go to school picture he was usually pretty much awake. He would see Sherry and a big smile would appear and I can hear him say slowly......SHERRRRRRRRRYYYYYYYYY!!!!!!!! They always greeted each other with a morning hug. Sherry taught Sammy all through grade school and she had a smile on her face every single day! I would like to think Sammy put that smile on her face but I think she is just that kind of teacher! She thought outside of the box and came up with some amazing ways to keep Sammy focused especially toward the end of the school day when Sammy was tired. Sammy loved Sherry and Sherry loved Sammy. What better combination is there for teaching and learning?!?! Every holiday I get to bring out Sammy’s works of art (along with my other children’s) and even though I have tears in my eyes, I am so thankful for Sherry and all her patients and love for Sammy. Two of my favorite things they made together are.....a picture frame Sammy painted with a picture of Sherry and Sammy at the zoo in it and a bracelet Sammy made with hearts and x’s and o’s that I wear everyday. I am so grateful for the 15 years, 284 days, 8 hours we had our sweet Sammy, but I want more......It doesn't get any easier, we just get better at it.

Happy Birthday Sammy!

October 11th, 1993 I will remember always as the day my sweet Sammy came to us and changed our lives for the better! (As all of my children did!) Sammy however changed our lives by "getting in our face" about life! Out of all my children, Sammy is the only one that "stayed" with just me for 9 whole months! He started teaching all of us patients and love from the very first moments! He taught us to accept change and to adjust! And boy, did we need to adjust! Vince became a "single" father to Rhiannon, Vinnie and Donnie while I "lived" many months at St. Francis. He gave us many amazing friends and relatives that stepped up and helped with our daily lives. Then the really teaching began.....Sammy taught us that joy can be found anywhere you want it to be. Sammy taught us that we can do anything we decide to conquer. It took Sammy 4 years but he was determined to walk and then soon after we were forever looking for the "wanderer"! It took 2 years to learn to tie his shoes...TWO YEARS and he never got frustrated!! He was so proud of this. He taught us that love CAN and WILL win! He always insisted that hugs ended every disagreement! He loved God and wanted to celebrate his love for our Lord by going to mass and serving on the altar. It was never a "chore" for Sammy....He wanted to go! This humbled me and gave me a new joy while celebrating mass. He loved his family so much and let us know every minute of every day. He was so happy when he spent time with his best friend and nephew Marcus. What an amazing friendship they had. I loved it when he put his arm around Marcus and called him "buddy". Loving everyone was so easy for Sammy because his heart was always open! I know you are still loving us Sammy. We miss you and love you so much. Happy Birthday! Thank you God for such a wonderful gift.

It doesn't get any easier...we just get better at it.

It's a long reach!

While at Mass this past Friday, one altar server was having a hard time lighting the taller candles on either side of the altar. Like so many other little things this too brought back a great memory. As I have said in other posts Sammy loved to serve mass. Every time he saw his friend Seth L. Sam would say with authority "SERVE MASS!" Sammy wanted so much to do everything Seth did on the altar. One of those things was to light the candles. On one Sunday while Seth was giving Sammy the official job of lighting the candles Sammy could not reach the tall candles. With out hesitation Seth grabbed Sammy around the waist and lifted him up to light them. It was amazing and heart warming. Everyone waiting for mass to start got to witness this incredible act of love and kindness for a little boy who just wanted to be like everyone else who served mass. I thank God that Seth L. was one of Sammy's good friends.
It doesn't get any easier. You just get better at it. God is good.

Favorites!

Did you know that Sammy's-


Favorite Food was-Cheeseburger happy meal with a sprite to drink
Favorite Toys were-markers, plastic animals, small disney characters
Favorite Friends- His nephew Marcus and his brothers Vinnie and Donnie
Favorite School subject-math
Favorite Thing to do on vacation-Walt Disney World
Favorite Sport-Golf
Favorite Activity-bowling with Vinnie
Favorite Song to sing-You are my sunshine
Favorite restaurant-LaMex


Other things Sammy love to do were:
Dress up like his favorite Disney characters (Buzz, Captain Hook, PeterPan, Mickey Mouse etc.)
Serve Mass
Watch movies on his LapTop
Sing, Sing, Sing!!! ( just like Donnie)
Draw (just like Vinnie)
Take photographs (just like Rhiannon)
Pretend to be a priest and have Mass in front of the Fireplace
Act out plays that Donnie performed
Go to the zoo
Go to Chicago
Keep score for the guys at basketball
Stick his belly out and pretend to be just like his Grandpa G
Ride in the golf cart with Mike L
Order a hot dog at the halfway house



It doesn't get any easier. You just get better at it. God is good.

Some days when I think I am doing ok and even feel some happiness, I am overwhelmed with sadness and feeling like we lost Sammy yesterday not 2 years ago. Today when I was running errands it happened. Memories of the parent/child golf outing came flooding back when I saw another Sam walking home from school. (Don't get me wrong....the memories are wonderful and happy. Missing Sammy and wanting him back is just so all consuming.) Sam T and his dad were paired with Jake D and his dad, Sammy and Vince along with me and Marcus, the last time Sammy played in the Parent/Child outing at the Elks. The day was full of happy moments of laughter! Boys being boys (in a good way!) and a day full of sunshine and golf. I remember the boys helping each other line up putts and cheering when Sammy had a good shot! It wasn't about who might win that day and bring home the trophy, it was about boys hanging out on the golf course and having a good time! Those boys gave Sammy a day of joy and friendship. Thank you and God bless you boys!

It doesn't get any easier. You just get better at it. God is good.

Barney!

The K family is going to a concert this week and this refreshed my wonderful memories of the years we went to Barney concerts. You see, the Barney corporation always gave children with disabilities and their entire family free front sections tickets and meet and greets. It didn't matter if your child had been to 1 or 10 precious concerts! Of course, any price would have been worth the huge smiles and hugs Sammy gave when he saw Barney! One Barney memory sticks out. One year we took the boys to Universal Studio's in Florida. I didn't realize that Barney was there. Sammy spotted the Big Beautiful Purple Guy on the outside of his building. So, we stood in line. It didn't matter how long until the next concert.....Sammy was not budging until he was let inside. Without asking, someone approached us and said they had a special place for us to sit. We got to go in first! If you know Sammy, you will remember in his excitement, he would often stiffened up and make an adorable sound. There, in the concert area, was kind of a T area in the middle of the seats that was used for Barney and his gang. They settled us right there, front and center. Sammy loved the concert and many times Barney and his "buddies" would look at Sammy and motion to him. When the concert was over we were almost to the outer door, when someone came up to Sammy and said. "Barney would love to meet you if that is ok." Oh did I mention Sammy invited his big brothers to join us? Yes, they graciously waited to ride all the rollar coasters until after the concert! Soooooo, Sammy, Vinnie, Donnie, me and dad and we can't forget Grandma G all waited for a private meeting with Barney. It was amazing! At Universal, Barney speaks to you!! Yeah and he mentioned Sammy by name!! It was awesome to see Sammy so happy!! Sure we wouldn't pick Barney to put on our Ipod but at that moment I would have listened to anything Barney sang! He not only won the heart of my little boy but he also won my heart that day!! So if you find yourself annoyed with one more "I love you, You love me.......", remember how big the Barney corporation's heart is!!

It doesn't get any easier. You just get better at it. God is good!

Smokie Mountain High!

On our recent trip home from Florida, Vince and I stopped by to visit with our Tennessee friends. It was so good to sit and visit and tell stories about our fun times. Many included stories of Sammy and everyone was comfortable talking about him with us. It was such good "therapy"! One story Jimmy was telling was the time we were all outside in the back yard and "WHERE WAS SAM?" happened yet again! He remembered me being very upset with Sammy. Somehow I only have memories of a very patient calm mom! We were all yelling Sammy's name and searching the back yard. It backed up to a river and many areas that could mean danger for Sammy. I think about 3 acres of trees and river. Once again Sammy didn't answer. Panic was very near for all of us.....Pam, myself, Jimmy, Bekah, and Abby. Abby, not so much panic, as she was very young! Pretty soon Jimmy yells out.....FOUND HIM! He was just a few yards away on the other side of the barbed wire fence, in the neighbors yard, sitting quietly with a sweet smile on his face!! Hugs all around!! The fun part was just afterwards when we were all in the house "celebrating" having found Sammy. The girls, Bekah and Abby, were playing with Sammy. Bekah always gathered Sammy into her room or the family room and just played! It was always as if they were playmates on a daily basis, even though we only saw each other maybe once a year at most. Bekah and Abby always saw Sammy as just a little boy who was fun to play with. During our recent visit Bekah, who is soon to be 16, explained to me that she has chosen to go into nursing and wants to work with children like Sammy. What an honor to think Bekah made a difference in Sammy's life and Sammy made a difference in hers. God Bless you Bekah!

It doesn't get any easier, you just get better at it. God is good.

Sing along with me!

After a lazy, couch filled November and December I made a goal to get up and run in January. So, I urged my mom to join me and we have been going to the rec. center in town to use the track. Thanks to Santa Vince I have an Ipod so I downloaded some cd's of what I thought was Donnie and Vinnie singing. While I was running this week I put it on shuffle (because I can't figure out any other way to set it yet!) and about a mile into my run I was surprised to hear a wonderful duet of Donnie and Sammy singing! I remember so vividly the day they sang and I recorded! Donnie had to start the song 3 times because Sammy's amazing off key voice would throw Donnie off. But the third time really was the charm. Thank you so much Donnie for making music with your little brother that day. What a gift!!

It doesn't get any easier. You just get better at it. God it good.

Sammy's smile!

January 1st 2009.....Sammy went to live with our Lord in heaven. No story on this post, just pictures to enjoy.

It doesn't get any easier. You just get better at it. God is good.

Sammy now has someone to serve with in heaven.

Father Mike was so wonderful with our Sammy and we will never forget his kind heart and loving soul.

Mr. Jingle Bell

I recently was reminded of a very special Christmas parade! I am not sure how old Sammy was, maybe 5 or 6. Sammy was chosen to be Mr. Jingle Bell and with that he was given the privilege of riding with Santa in the light parade in downtown Pontiac. He was so excited. The weather was good that night and Vinnie was so helpful by riding in the car with Sammy so he could be propped up for everyone to see. (Thank you Vinnie!) I remember taking pictures and thinking how wonderful for Sammy! Sammy loved parades and always pretended he was in a parade whenever we was in his wheelchair. He often worked on perfecting his parade wave!! Of course when he was in the parade he forgot all about the wave and just enjoyed the whole experience. After the parade was over Sammy was able to go to sit on Santa lap first!! Santa understood everything Sammy asked for because all of his wishes were under the tree that year!! I will be putting Sammy's Santa hat that he wore in the parade next to Sammy picture with Santa on the table this week. I know I always end with "it doesn't get easier, you just get better at it" but today I dont' think I can ever get better at celebrating Christmas without Sammy.

Leaving us notes!

The other day Vince asked for a blank DVD to back up something on his computer. I went to my desk and grabbed a pack of dvd's and gave them to him. The first one looked like it had a scratch so Vince picked up a 2nd one. As he took the 2nd one off the cilinder there on the 3rd one down was a dvd with Sammy's handwriting on it. It was just one of the many notes he use to write! He love to imitate and writing was one way he could be just like his everyone else. I remember whenever we went to Disney, Sammy would take his autograph book and enjoy asking for his favorites to sign it. Then at the end of the day he would go to a blank page toward the back of the book and write a note and sign it with SAM! He wrote in so many books and finding a note from Sam this week was wonderful and sad all at the same time. Sammy would have been 17 this week. It doesn't get any easier, you just get better at it. God is good.

This is my letter to the editor. I write one each year for Down syndrome Awareness month.

Although our son will always be 15, Sammy would have celebrated his 17th birthday this October 11th. Sammy was born with Down syndrome and at the time of his birth our family had no idea what a gift we had just received! Sammy, as well as so many individuals with Down syndrome, gave to us so much more that we could ever have given to him. He was our teacher all of his life. We all need to take time to learn from all individuals with Down syndrome. For 15 years, 2 months, 21 days, our family was loved unconditionally. Sammy didn’t judge us. He didn’t care if we were millionaires or paupers. He was happy sitting at the kitchen counter with us as much as going out on the town. He gave us great joy and gifts of himself each day. This month is Down syndrome awareness month and we all need to be aware that having a friend or family member with Down syndrome is a gift that we need to appreciate and embrace. The world is a better place because of individuals with Down syndrome and I would also like to think that I am a better person because of Sammy. Those of you who knew Sammy, my hope is that you learned from him and remember him with a smile. Those of you who didn’t know him my hope is that you will someday meet and get to know an individual with Down syndrome. You will be forever blessed with a gift of love and an amazing friendship.

It doesn't get easier. You just get better at it. God is good!

Up, Up and Away

Today as I looked at pictures of a balloon ride on Facebook I remembered my balloon ride with Sammy. It was the first time our town had a balloon festival. One balloon was sponsored by Children's Hospital of Illinois and my good friend, Pam, made it possible for Sammy to get a free ride. The catch, his "afraid of heights" mom had to go with on the ride! Sammy was excited but afraid. He didn't want to get into the balloon because of the noise when the balloon was inflated with hot air. I knew if we got him into the balloon he would love it. Our balloon operator said a prayer and off we went. Once again I was right! It was amazing. The incredible views of the sky, the other balloons, the farm land and buildings. Sammy loved every minute we were in the air and he did his wonderful belly laugh when we landed. He tried very hard to join in on the tasks to get the balloon put back on the truck after our flight. Thanks Mr. L for reminding me of another special time with Sammy. It doesn't get any easier, you just get better at it. God is Good.

Finding Sammy!

During Sammy's life, "finding Sammy" got to be an art form! He would quietly plan his escape and sneak away. One of these times was when he was 9 years old. I was working at the downtown store and Sammy was with me that day, when someone came in and told me they had just seen Sammy at the stop light on Howard street getting ready to cross the street. Off I went, in a panic, to find Sammy. I ran the 3 blocks to Howard and Main and no Sammy. I yelled Sammy's name and silently prayed, "Please Lord let me find him safe!" With no Sammy in sight I took a chance and tried the Church doors. The Main street door was unlocked so I went inside and continued to yell Sammy's name. Nothing but darkness and the sound of my breathing. Trying to calm myself I yelled again. Then I heard him. "Yeah"....Sammy where are you....."Here". I followed his voice in the dark church and found Sammy in the front just off the altar standing among several altar server uniforms on the floor. He was smiling and trying to find one that would fit! "Me" he said and I knew he was telling me he wanted to serve mass just like his brothers! So after I told him he was to NEVER NEVER NEVER leave the store like that again, and how much he frightened his mom, I told him we would talk to Monsignor Mack and ask if he could serve with Vinnie and Donnie on Sundays. Monsignor said yes and a special order was made for a smaller size and Sammy soon joined his brothers on the altar! Sammy served mass for 4 years with his brothers, 1 year with Seth and 6 months with Mark, Mike and Paul. He was so happy whenever it was his turn. Each time I say the joyful mysteries of the rosary and come to the 5th mystery (The finding of Jesus in the Temple) I think of that day and smile.

It doesn't get any easier, you just get better at it. God is Good.

Happiness X a million!!

So many happy memories! Many of those are from our many trips to Disney. Sammy loved Disney and his best Disney friend was his nephew Marcus. Marcus and Sammy both loved each part of Disney. They loved to watch parades and shows, ride the many rides and of course meet the wonderful Disney Characters! I want to share with you one of the short rides Sammy and Marcus loved. Goofy's barnstormer! We all rode it several times and sometime 2 or more times in a row. (My filming skills leave a lot to be desired!!) The smile on Sammy's face is worth MILLIONS! I miss Sammy and that sweet smile so much every moment of every day. More Disney memories to follow!!

It doesn't get any easier. You just get better at it.

Proud Server!

This past Sunday during mass a sweet memory came to mind. Our new seminarian was walking up to Monsignor to hold the Holy Book for him to read from when the memory of Sammy's sweet determination to be just like everyone else came full force into my mind! As I am writing this I am smiling. Sammy wanted to hold the "Book" just like Vinnie, Donnie and Seth always did when they served. Of course those boys were all 5'11" TO 6'2" tall. Sammy.....not so much! SO when Sammy proudly carried the Book and stood on the lower step and held it up for Father Mike to read from there was a pause and Fr. Mike (who is not a tall person) adjusted his glasses, bent down and with a slight grin on his face proceeded to read aloud. I think most of us sitting in the front section of church that Sunday were very entertained and no one was more proud than Sammy himself!! I miss seeing Sammy on the altar serving. Many memories of those days to follow!!

It doesn't get easier, you just get better at it. God is good!

Happiness!

I am sitting here at 3:30 am and I am concentrating on remembering Sammy's sweet voice. I remember him swinging on his "new" play set in the back yard. I was filming him as he was perfecting his "pumping" skills and I asked him simply. "Are you happy Sam?" and he smiled his big smile and said "YES" and just kept on pumping and smiling! So simple yet such a wonderful memory. Sammy was most often found smiling and enjoying life. I pray my 3 older children will discover the same degree of happiness in their lives and embrace it!

It doesn't get easier you just get better at it. God is good!