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!

When you lose a child you miss everything about your child, even the tedious things and the "unpleasant" things. What I thought at the times was unpleasant, now I would love to be doing. Sammy was in diapers all of his 15 years and I would love to be changing diapers right now. I remember after every change how I would kiss his belly and Sammy would always pat it and say "Paw Paw". This was to tell me his belly was just like his Grandpa Don's. Sammy also like to dump his toys and markers. Picking up toys and markers.............how wonderful that sounds! And to have a little foot in my face or arm slung over my neck while trying to sleep......priceless! So many things to miss.

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

The Gangs all Here!

Most years our family traveled to Disney World. As Sammy got older some years we were blessed with two short trips there. Disney was always, without exception, wonderful to Sammy and all of us. Because of Sammy's hips he used a wheel chair to get around when we went there. Sammy loved the rides but he lived for the parades and the Characters there. One year we were there for Sammy's birthday and as many of you know Sammy got a button that announced his birthday celebration. Epcot was a favorite place to see the Characters because they were so easily accessible to everyone. As we got in line a staff member noticed Sammy and moved us to the front of the line. (Disney is very good about giving children with disabilities the "right away") Then all of a sudden Minnie came running over, then Donald then Pluto, Mickey, Chip and Dale and lastly Goofy came running over from where he was out in the hall. It was priceless. Sammy was so excited and hugging everyone. People were crying in line and grabbing their cameras and it was like the Hollywood paparazzi was there! Sammy was on cloud nine the rest of the day and a large poster hangs in Sammy's bedroom and at Sartoris Drug store to forever mark that day. Thank you to all the beautiful people at Disney World who treated Sammy like a VIP each time we were there and giving us magical memories!
It doesn't get any easier, you just get better at it. God is good!

Dad, Look, Look, Look, there he is!

If all of our children could be as passionate as Sammy when it came to going to church and enjoying his time there! Every week I struggle just to get through mass without tears. The memories are so beautiful and it was one of Sammy's favorite places to be. Of course he loved to serve mass but when it wasn't his turn he just loved to be in church and pray and sing and most times "bug" his dad from the pew! Oh how he loved to try to make Vince turn around and look behind him to wave at Pam and Mike or to the side to notice J.T. But his most most favorite time during mass was when Monsignor would come out just before communion would start, to assist in the process. Sam would grab Vince's chin and point with such excitement. LOOK, LOOK, LOOK! He was filled with such joy and happiness every week like it was the first time and he was surprised Monsignor was there to help out. Sammy also loved to sing the Alleluia right before the Gospel. Then as we all filed out Sammy would run to Monsignor and give him a big hug then go back to the front of church and kneel, bow his head and praise our Lord with his left handed sign of the cross.

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

The King and Sammy!

My friend Peg just went to Memphis and this brought wonderful memory forward! One year Rhiannon, Marcus, Sammy, Donnie and myself were driving back from Florida and decided to add a stop at Graceland. What a blast. The first evening we went for a walk on Beale Street. First stop "B B Kings"! As we walked in we were greeted by what we refered to as Beale Street's own Oadie! What a blessing for our children. Sammy and Marcus began to dance and were joined by "Oadie"! It was a performance enjoyed by all. After several minutes of dancing we finished eating then went on to the gift shop that was attached. There in the window was a child size drum set. Both Marcus and Sammy went for it!! I remember such joyful sounds along with such LOUD drumming!!I also remember being worried that the boys should not be in the window drumming! That night we enjoyed a wonderful evening in the "Animal" room at the Heartbreak hotel. In the morning as we toured Elvis' home Sammy decided to lay down and the front steps and refuse to get up. So as any mom would do I decided it was a photo op! Unfortuately it was before digital so the picture is not one of my best but the memory is in perfect focus. Pictures will be posted at a later date. For now I will post a sweet picture of my sweet boy.

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

Where's Dad??

As Vince and I traveled to Florida just recently many memories came flooding in. Sammy's favorite vacation spot was Disney so we spent many long hours in the van driving there. One of those drives came to mind. Rhiannon and Marcus were with us this trip, and on this trip Sammy had discovered the question "Where's dad?" and love to hear himself ask it, OVER AND OVER AND OVER. I mean, not just over and over but non stop! I think we were around Effingham Illinois, on the way mind you, not coming back home, when I decided I was so annoyed with him and needed to stop the van and have a serious mom, son chat. I pulled into a Steak and Shake and announced "Everyone out, we are by passing the drive through and going in!" I took Sammy into the restroom and freshened him up then had my heart to heart. I got very serious and was nose to nose when I explained to him "NOW SAMMY YOU NEED TO QUIT ASKING ME EVERY FEW SECONDS WHERE DAD IS AT. I TOLD YOU HE WILL MEET US THERE. WE WILL SEE HIM IN 2 DAYS. DO YOU UNDERSTAND?, "YES MOM". ARE YOU GOING TO KEEP ASKING? "NO MOM." Hugs, kisses and a big smile followed his promise. After getting our food to go we got back in the van and I got back on the interstate and before I was off the ramp, yup you guessed it, Sammy asked "Where's dad?" Rhiannon looked at me and laughter erupted! The question continued and he added another one on day two of our drive. "ARE WE THERE YET?" I missed my driving partner this past vacation and Florida will never be the same without Sammy there to show us the joy and wonder he saw every time we were there.
It doesn't' get easier we just get better at it. God is good.

I can see my house from here!

Oh my goodness. I was at K-Mart today and saw a friend as I was entering the store. Peter, you brought back a memory!! During Vinnie's high school years he played baseball all four years. I can't remember exactly which year it was or the town. We were watching one of Vinnie's games and as often happened Sammy was MIA. Usually that meant he was walking toward a concession stand. After what seemed like a very long time someone happened to look up and there he was. He had climbed on the outside of the football stadium press box. Yes I said outside of it. There were no railing on the sides or back and only a maintance ladder going up the side. With my heart in my throat I watched Vince slowly and carefully get himself to the top so he could bring Sammy down. After Vince was able to get Sammy down and I gave him a big hug, it was so hard not to smile and even chuckle at how proud he was of himself. I can't tell you who won that day or even if Vinnie got a hit but I can tell you for sure that many parents can still tell you who climbed the ladder up to the top of the press box that day.

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

My buddy Vinnie

This is not one memory but several warm fuzzy ones about an amazing older brother. All of Sammy's siblings had special relationships but today I am remembering the one between Vinnie and Sammy. Sammy adored Vinnie. Vinnie adored Sammy. Vinnie always took time to play, sing, watch tv or just hang with Sammy. One of the things Sammy loved to do with Vinnie was go bowling. I don't have any memories of the bowling because it was always a special time that was just for Vinnie and Sammy. I do however have memories of the excitement in the house when Vinnie would say, "Lets go bowling, Sammy!" Boy Sammy would light up and start singing. No song that any of you would know but it would always contain the word VINNIE. We would lovingly call them our Vinnie songs. Each one was different but the same. I remember taking Sammy to see Vinnie in Chicago and Vinnie taking Sammy's hand and going for walks along the lake or through the zoo or just down the street to the grocery store. Vinnie became an amazing brother the day Sammy was born and I am so proud of the big brother Vinnie continued to be for all of Sammy's time here on earth.

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

Spa Phone

On one of our vacations all four of my children were with me at Clearwater Beach. We were enjoying the beach and pool and the weather was perfect. Vinnie and Donnie were Jr. High age and there were so many cute older girls there. The boys, although I am sure they would have preferred to be alone, included Sammy when they were hanging with the girls. One particular time the boys joined the girls in the hot tub. Sammy wasn't able to get in because of his heart but was hanging close to the edge. Rhiannon and I were in the hotel room a few feet away with a napping Marcus. There was a squeal, an "OH NO" ! Sammy must have felt left out. He reached over to one of the girls cell phones, tossed it in the hot tub, and smiled. Luckily Vinnie reacted with speed and precision, grabbed the phone, gave a shake, and wrapped it in a towel. The phone survived and Sammy gave "sorry" hugs all around!! All was forgiven!

One of my friends prompted this memory when her little one washed her phone in the toliet so her picture with Sammy gets the honor this time!

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