Walking for Samuel

On Saturday, 1st May, 2010, we participated in the Tampa Bay Walk for Autism Speaks.  Fourteen of us walked, we were a few in thousands.  The Tampa Bay area raised over $180,000.  

We walked to support Samuel.

When Samuel was first diagnosed, Autism Speaks sent us a 100 Day Kit that has helped us navigate us through the world of therapists, neurologists, the different therapies available, tests, tests and more tests..........

 

 Our team is called

THE MIGHTY ROOS!! 

Some were a little disparaging about our mascot.....

is it a mouse or a kangaroo??

Have you ever seen a boxing mouse????

Don't mess with the MIGHTY ROOS, we are serious when it come to supporting the cause of autism and Samuel!!

The day of the walk happened to be the hottest day we have had in Tampa for quite some time now.  The walk itself took place at North Straub Park, St. Petersburg.  Beautiful setting for the event, and a nice breeze did come in off the water every now and then.

Thank heavens for the trees!!!  When we stood under the trees it was immediately cooler.

 

 They were well equipped with porta-potties.  As we were waiting for our team to arrive, we did a little people watching.  The first place people went when arriving at the park????  You got it.....

 

 This was a very popular place with the kids.  They had several jumping thingos set up for the kids to enjoy.  I know I took a picture of Samuel jumping, but can't find it, so here is a picture of Sam's friend Luke jumping.

 

 Here we are trying to organize organizing ourselves and preparing for the strenuous walk ahead....in the sweltering heat........early on a Saturday........wearing the best t-shirts there.........

 

 All kinds of people were there to support us.  We were a little suspicious of some.  But it just goes to show that even villains can take time off from doing evil to support a good cause. 

 

Luke, I am your father..........sorry, a bit hard to resist.

 Sammy Cummins, Eli Nickles & Luke Nickles pictured with Storm trooper 1, Storm trooper 2, Storm trooper 3,  & Mr. Vadar.

 

Luke with Storm trooper 2........or is it 1, 3, or 4???

 Eli with Darth

 

 Don't mess with the ROOS storm trooper guys!

 

 The crowd

 

 The walk begins........

 

 Frank and Lisa Griswold

 

Kenny and Luke

 

 Samuel thinking in his wagon

 

 

 

 

 

 Samuel holding his Mum's hand.

Please excuse my big bum.

 

 

 Everyone was there, even ELVIS!!!

 

 This was Samuel's favorite spot.  Right by the Toys R Us tent.

If you look closely at the upper left side you can see where Sam has spelled S A M.

 

 After the walk in the shade of the trees.....

Eli and Beth Nickles (and Jessica's fingers....how rude!!)

 

 

My sweetie, Jim. 

 

Jessica

 

Jimmie Lee Cummins

Kenny & Luke Nickles

Kenny dancing in his manly shirt

After it was all over, we walked down to the pier to have some lunch and to chill out for a while.

Sam liked riding on the trolley.

Terrible waitress in the restaurant we ate at, but the company was good and it was air-conditioned!!!

Sally-Ann

Lest We Forget

"They shall not grow old as we that are left grow old.
Age shall not weary them nor the years condemn.
At the going down of the sun and in the morning
we will remember them."

Emma Rose

23rd April, our little girl Emma would have been 6-years-old if she had lived.

Emma was a big surprise. We had been trying for 12 years to have another baby. I had finally resolved in my heart that we were only going to have two children. A friend of mine had just found out she was pregnant, and for the first time in recent memory, I didn't get that little twinge in my heart when she announced her pregnancy. The first few weeks were a little rough. Through and ultra-sound we discovered that I was pregnant with not one, but three babies. Unfortunately, a heartbeat was never found on two of the babies and they just gradually faded away each week until they no longer showed on the ultra-sound. Emma continued to grow and thrive. I was a high risk pregnancy - forty-one, diabetic, high blood pressure and overweight. Every week I went to the doctor, tried to do everything they instructed me to the letter. Everything went along great. We chose not to have any of the testing done for birth defects, etc. At 8 1/2 months I went to have a amnio done at the hospital. Emma was measuring over 9lbs, so the doctors thought it might be wise to induce. The amnio was to check her lung development. The day before I had been at the doctors for my usual weekly appointment. I had a non-stress test which was normal. I also had an ultra-sound because Emma had been breech and if she still was, they would schedule me for a C Section the next day. During the non-stress test however, Emma had turned around and was head down.

The next day I woke up feeling extremely nauseated, but thought it was just nerves because I absolutely hate needles. We went to the hospital and there we received the most devastating news of our lives. Our excitement and joy gave way to pain and grief. In a room where the walls were covered with pictures of "miracle" babies - babies that had been operated on while still inside their mother's womb - we were given the news that our little girl had died in the night.

When I was in labor with Emma, it was the most excruciating pain I have ever experienced, and it was probably made worse by the emotional grief and pain I was going through as well. I prayed so hard for a miracle, that the doctors were wrong. But, when the doctor placed her in my arms, I knew that my prayers had not been answered and I had not received my miracle. I thought that I had failed to protect my child and wondered how Heavenly father could give me such a wonderful gift after 12 years of trying to have another baby only to snatch her away at the last minute.
The following months were a bit of a blur, I did the things that were required of me, that I had to do, but there was not any joy, just depression. Finally, when I didn't think I could sink any lower, when I didn't think I could bear the pain any longer, I finally prayed to Heavenly Father and asked for the peace that I so desperately needed.

Every night I had been having the same dream over and over. I was sitting on the bed playing with Emma. There was a loud noise, I looked up and when I looked back down, she was gone. I could hear her crying and crying but couldn't find her. Every night it was the same and during the dream i would be saying to myself, "Don't look away, don't look away!" But I always did. One night, shortly after my talk with Heavenly Father, I had a different dream. Our family was walking along a cow path on a hillside. Coming towards us was a man, as he came closer I could see that it was the Savior. As He came closer still, I could see that He was carrying something in his arms. The closer He came, I could see that he was carrying our little girl. Finally our paths met. The Savior placed Emma in my arms. My arms stopped aching, my heart stopped hurting. I have never felt such joy and peace. In one brief moment the Savior’s hand and mine brushed. I had read many times in the scriptures about the women who knew that if she just touched the hem of the Savior’s clothing, she would be healed. That is how I felt. I knew, and know that Jesus Christ and Heavenly Father love me. I felt that love. I knew in that instant that I was not being punished. I also knew that I had been wrong. I had received a miracle. That miracle was the Savior’s atonement. He suffered in the garden of Gethsemane for me. He suffered pain so great that he bled from His pores. He died on the cross for me. I knew in that instant that I would once again hold my little girl, that I would get to raise her and we would all be an eternal family.

I still miss her and cry for her. I still visit her grave and place pink roses there. But the promise of having my little girl with me again makes the pain bearable and gives hope.

We have this picture hanging in our living room. Jim bought it for me the week after Emma died. It is by Greg Olsen and is called, "Forever and Ever."

Our family calls it "Emma's picture."

A friend wrote us a poem shortly after Emma died.

After so many years of waiting patiently,

There was to be a new member of your family.

Though the thought of having her was at first a big surprise,

Over time you imagined her, ten fingers, ten toes, two beautiful eyes.

The perfect little baby, the final finishing touch,
To be a part of this family that had waited long enough.

The things you gathered for her were selected with love and care,

The crib, the bedding, her clothes, and the bows for her hair.

Yet, through a simple twist of fate and touch of the Master's hand,

Sometimes the gifts He has for us are not what we have planned.

You see now the roles have been reversed, she's gone back to Him above,

To look down and watch over you, with her eternal love.

R. Eaton

Sally-Ann

For this Child

There is a new show on TV called "Parenthood".  It had various story lines going on, but one involved parents receiving the diagnosis of Asphergers  for their son.  The parents were devastated.  I have actually been thinking about this lately - the word devastated that is.   The word devastated is used a lot when it comes to parents and families receiving a diagnosis of autism.  I am sitting here thinking back to when we received Samuel's formal diagnosis.  I was very emotional and had a few meltdowns in the week following, but I don't think I was ever devastated. 

I had a sense of relief because we finally had a name to put to Samuel's behaviors.  Relief because we now could take steps forward in finding the right course of action to help Samuel.  In the past I have received news that has devastated me, crushed me.  This didn't.  I am not trying to make light of others emotions and feelings.  This is me and how I felt.  Sitting in a hospital room and receiving the news that the baby you were supposed to be delivering that day had died during the night is the most devastating news I have ever received.

I have days when I am overwhelmed by trying to do all that needs to be done to help Samuel.  

Constant, constant, constant.

Repetitive, repetitive, repetitive.

All for one small glimmer of eye contact.

One small glimmer when he speaks a sentence using his own words.

One small glimmer when little arms are thrown around my neck accompanied with those longed for words, "I lub you Mummy."

A Few Joys of Raising Autistic Children

These thoughts were shared at a workshop about autism at a BYU woman's conference - a few of my own have been thrown in
We get to enjoy our favorite movie line quotes  again and again and again.
Peer pressure—what’s that?
If the definition of humor is absurd and unexpected responses—we have A LOT of good jokes!
I actually prefer all my measuring cups, soda cans and spoons, lined up end to end across the kitchen floor.
Fresh perspectives on parenting, relationships, the gospel, and the joys of the alphabet.
The letter T is actually a member of our family.
I may have been compelled to learn it, but what better attributes than patience and compassion.
I know more about parenting than all the other parents I know combined; because they all gave me their advice.
Living with a developmental delay is like watching child development with time-lapse photography—you can actually see the Lord’s hand in it.
Chasing a totally unaware child the entire length of Disney World and back burns roughly 15,000 calories—that’s like 25 doughnuts!
When my child is displaying some echolalia, I just say out loud, “Mum, you are beautiful!”
They say autism is complicated, but with a child who has no social awareness, “What you see is what you get”—could these children be more simplistic?
Children of few words rarely talk back.
It is the lessons we learn from teaching our “outside-of-the box” children, that help us to be better teachers of all children.
Could it be that my autistic child came here to lead me to the hand of God?
If flowers grow best when there is both sun and rain, we must be living in a lush rain forest!
Sometimes it’s nice to be loved by someone who has never passed a judgment.
Are there references to autism in the Bible? Oh, yes!--those who had no guile.
When you live with someone who interprets everything literally, “cashews” become something cows wear on their feet, and “notions” are people who have no shins.

I have this picture of Samuel sitting on the breakfast bar.

The frame has the caption, 
"For this child I prayed."
Samuel 1:27

The scriptural reference is about Hannah, who prays for a son, and vows to give him to the Lord—Eli the priest blesses her—Samuel is born—Hannah loans him to the Lord.

"Wherefore it came to pass, when the time was come about after Hannah had conceived, that she bare a son, and called his name Samuel, saying, Because I have asked him of the Lord." 

 When we walked through the front door with Samuel, coming home from the hospital after he was born, I cried.  Actually, I think sobbed would be a better word.  I sobbed and sobbed.  I felt it was coming from deep within my heart.  I was so relieved to be bringing my baby home, to have him in my arms.  Not a day goes by that I am not grateful for the trust that has been placed in me to raise this special little boy.  He needs me to be his voice.

Six years ago when I was trying to overcome the grief of losing our little girl, Jim counseled me to find something I was passionate about. I think I may have informed him, rather testily I think, that I was passionate about my children, so give me another suggestion please. So, here I am 6 years later fighting passionately for one of my children. This beautiful little boy needs me to be his voice.  I am forever grateful for those who help me and speak for Samuel.

 One voice can be powerful, but I am picturing the Tabernacle Choir!
That is what is needed.

Sally-Ann

My Dad

I actually posted this quite a while ago when I was participating in "Wednesday's Walk Down Memory Lane".  Which is starting up again by the way!  Today is the anniversary of my Dad's death, so thought I would post it again with some minor changes.  As we are preparing for our first trip back to Australia in 12 years, my thoughts have naturally been turning to memories of home. Memories of family, events and places. Memories of those that we will be visiting with and those that are no longer there. Our last trip back to Australia was for Christmas 1996. My Dad was dying from cancer. I had to decide whether to go back for a funeral or to go and see Dad before he died and let the children (and me) have some memories of their Grandfather. It wasn't a very difficult decision.

My parents divorced when I was 14. My Dad remarried a lady that my family had known forever. Her husband was a fishing buddy of my Dad's and he had died a few years before my parents divorce. Birdie is definitely on our list of people to visit several times. On our previous two trips back home she would whip up a full-blown meal out of absolutely nothing. When we would stop by to visit, she would always insist that we stayed for dinner (tea), when we would protest about it being to much trouble, she would say, "Nonsense, we are just having scraps."

I have wonderful memories of that trip. My Dad was a man of very few words, so we didn't have any long heart to heart talks, but sometimes actions make up for the words. I loved watching my Dad watching Jessica as she ran around his huge backyard with her brother. Jessica looked a lot like me at that age and I could tell that Dad was thinking of me as he watched her. It made me feel good to know that his memories of me bought a smile to his face. Dad always had a huge vegetable garden. He had been having trouble with birds, rabbits, etc., eating his vegetables, so as a deterrent he had placed several plastic snakes strategically around his garden. My children did not know that they were fake and they soon came tearing into the house when they spotted the coiled snakes basking in the sun. My Dad thought that was hilarious!!

 

Growing up, my Dad took me with him on fishing and hunting trips. He always put the worms or frogs on my hook for me - yuk! Dad even made me my own fishing rod. My Dad would often bring home orphaned baby kangaroos, wombats and one time, a native hen that we called a road runner. We raised it with our baby chickens. My Dad spoiled me. For Christmas one year Dad made me a playhouse that had a kitchen and a living room complete with a working stove and lights.

On our 1st trip back home, Dad loved taking the Joshua to a fish hatchery that he was instrumental in building and running. Joshua had the wonderful experience with his Grandfather of taking a dead mouse out of a mouse trap and resetting it. That day my Dad drove us all over the local area showing us the sights. We got to see the farm that my Mum and Dad had owned just after WW II.

This is my favorite picture of my parents. Not sure when it was taken, but, even though they divorced, it is good to know that they once loved each other very much. It is good to know that they still loved their children and their children's children.

This will be a difficult trip in some ways. My Dad died in March, 1997 and my Mum died February, 1998. Not having them there when we return is going to be a shock, even though they have been gone all this time. They are what make home - home.

It was a much different trip back to Australia last year.  Many people that I loved were not there this time.  We visited Mum's and Dad's graves for the 1st time.  Words cannot express how good it felt to be with my family.  I love being with Jim's family and hearing all their stories about growing-up, Dadisms/Rickisms and especially the stories about Jim's shenanigans!  But, I miss sitting around with my family and talking about our memories........our shenanigans.  I miss fishing with my Dad.

Sally-Ann 

WARNING - Gum boots needed to wade through the mush........

After I typed the title for today's blog, I realized that there are some who may not know what gum boots are.  Well, let me share.

This is a pair of gum boots that Samuel would like.  In fact, he had a pair that was a little like these.  Samuel loves to splash in puddles of water and mud, so gum boots are a must in his wardrobe.

I like the red shininess of the above pair of gum boots.  You certainly couldn't be in a hurry when donning this pair.  Maybe they are for the discerning dominatrix fashion conscious gum boot wearer.

This pair is a normal pair of gum boots.

 My Dad and Mum had a pair of boots like these.  These boots were made for working.........sorry, just had Nancy Sinatra's song, "These boots were made for walkin'", run walk through my head!!

 When I was little, this was they type of gum boot I would wear.  I loved my yellow gum boots.  I also had a yellow rain jacket to match.  Everyone would wear yellow boots and rain jackets to school when it was raining.  Looking back, we must have looked like hundreds of Gorton Fishermen heading off to school.

Well, I need to stop this splash down memory lane and get to the real topic of today's post!

Today is my husband's 45th birthday!!

 

This is one of my favorite photos of Jim.  Do you know which baby of ours he is holding??  Jim tells this particular child, "In this photo I have hair, in photos soon after this, no hair."

This is Jim and Sam in Sydney last year.
Jim is the best Dad.  I love watching him with our kids.

I

 I love Jim with all my heart.
We even had matching sweaters at one point in our lives!!
We have been married nearly 24 years and have seen a lot of the world together.
I still enjoy spending time with him more than anyone else.
We have fun.
He is a good man.
He is getting a little old........but is still the love of my life.
Sooooo, without any further ado!


I LOVE YOU JIM!!!

Sally-Ann

Last night Jim and I went to see "Little House on the Prairie The Musical".  I had mixed feelings about going to this show.  Like many, I grew-up watching "Little House on the Prairie" and reading the books.  Even though I loved the TV show and the books, I couldn't imagine a musical based on Little House as being all that exciting.  Well, I admit it, I can be wrong......rarely, but sometimes.

"Little House on the Prairie has remained one of the most popular and beloved celebrations of pioneering America since Laura Ingalls Wilder published the first book of her classic series 75 years ago. Now the inspirational stories cross into yet another frontier in an uplifting new musical. Melissa Gilbert, who we all knew as “Laura” for 10 years in the much-loved television series is now all grown up and playing “Ma.”

Through the magic of live theatre, the musical follows the Ingalls family‘s journey westward and settlement in DeSmet, South Dakota where Ma and Pa Ingalls hoped to make a better life for their children. It tells the story of their struggle to keep their land claim. In story, song and dance, we see the Ingalls suffering the hardships of winter blizzards and prairie fires as well as rejoicing in the settlement of land and town. Most of all, the story follows Laura as she grows from the wild child who loved to run free into a woman who embraces the responsibilities of her own future while struggling to remain true to herself.

Recommended for the whole family, LITTLE HOUSE ON THE PRAIRIE, THE MUSICAL brings the joys and sorrows of family life during the settlement of the prairie to contemporary America. Families will continue to identify with these life affirming stories that celebrate the pioneering spirit and the core values on which this country was founded – a spirit that resonates within each of us today."

Jim was quite excited to go and see "Little House on the Prairie the Musical".  In his younger days, Jim had a bit of a crush on Melissa Gilbert.

 

Mmmmh.......

I would say that there is no accounting for taste, but what would that say about him marrying me!!!!

Of course, Melissa Gilbert did evolve quite a bit over the years on "Little House".

We really enjoyed the musical, it is definitely on the top 10 list of the best shows that we have seen over the years.  Melissa Gilbert certainly didn't have the strongest singing voice in the cast, but it was cool to see "Laura" play Ma.

 We also found out a bit more about Melissa Gilbert.  She is on the board of the above charity......a very good charity.  Anything to do with the care and well being of children will always have a soft spot in my heart.  Click on the above picture to learn more if you would like.

While in Tampa the cast has been working on a Habitat for Humanity house in Ybor City.

 We had a wonderful night.  Bought some incredibly expensive mementos............

 

 We wanted to buy Bill (our nephew who is living with us at the moment) this "Farmer Boy" t-shirt.  Unfortunately, they did not have it in his size.  We thought he would appreciate this generous gift.......something to celebrate his new found skill and passion - farming on Facebook.

 Instead, we bought Jessica this t-shirt.

We could have bought Ma, Pa and 1/2 pint shirts if we had so desired.

 Every show we go to, we buy a mug.  Thought the tin cups were cute.

 

 Then Jim just had to have this stuffed horse for Samuel.  It goes with the decor of Sam's room.  It was soft and cuddly.  Where else could you get such a wonderful stuffed horse???

So.......I relented and bought it for Jim Sam.  After all, it is his birthday on Monday.

The songs were great, especially the last one.  Made us a little homesick for South Dakota.

It also made me think of what will be made into a musical next. "The Brady Bunch?"  "CHiPS?"  I know........"The Waltons - A Musical!"

YeeHaw,

Sally-Ann