Saylers Story

It is time for the United Angels Walk. I am so excited and passionate to be apart of such a wonderful organization. This is my first year doing the walk and I could not be more excited. It will probably just be me, Sayler and a couple of my family and friends but hopefully it catches on and becomes a big celebration for all who know and love her. I hope it becomes something we all look forward to every year to celebrate our beautiful angel and all she has accomplished. So we are having a team in her name. It will be a small one but filled with loads of love. This is her story ...

We were so excited to receive our beautiful little angel Sayler on February 16, 2005. Her older brother Jaxsten had been born two years earlier with only half a heart and had already had two open heart surgeries. So mom and dad were thrilled to have a beautiful, whole-hearted, healthy little girl. When Sayler was a little over three months old, Jaxsten had to go in for surgeries three and four. He was in and out of ICU for three months. During that time Sayler was passed around between mom and either one or the other of her two loving grandmothers. When Jaxsten’s long hospital stay was over, next came months and months of recovery for him with several different therapies. With all that had been going on, we were surprised to find out we were expecting child number three. Sayler, just twelve months old, started showing signs of “falling behind“. We excused it as “middle child syndrome”. She was such a great baby and had not required as much attention as Jaxsten had. When she was about eighteen months old, we realized she was falling further and further behind developmentally, and what words she had been saying, she was no longer. So with the resources we already had for Jaxsten, we began therapy for her. It was from her speech therapist that we first heard that scary word—autism. We were absolutely sure that did not apply to Sayler, and we were on a mission to prove the therapist wrong. After consulting with a couple of different doctors and having her hearing tested--not once, but three times--we begin to look into that scary word and consider what exactly it meant. I tried to find anything that would prove my gut fear wrong. It was at her second birthday party, when it was all I could do to keep her interested in anything the other kids were doing, or even in her presents, that with a heavy heart I realized this behavior was exactly what it was: autism. My fears were confirmed with testing, and I began mourning the death of my dream--the dream of my perfectly healthy normal little girl, a lover of Barbie dolls, a dancer, a future doctor married to a wonderful man, giving me lots of grand babies to enjoy. After “getting over it!!” and opening my eyes to see that “it is what it is,” I realized that it wasn’t that bad. It hadn’t changed Sayler. This had always been her. Our hopes and dreams may have changed, but it hadn’t changed her beautiful smile, her fun personality, her loves, kisses and snuggles (all, of course, on her time). She was still our Disney-loving, often giggly, always busy, adventurous, courageous, curious, and stubborn beautiful Angel. The way we looked toward the future changed, and sometimes change can be good. For us it was better than good; it was--and is--wonderful. There is never a dull moment with our beautiful Sayler. We are truly blessed to have her in our lives. We are grateful to have our hearts and eyes fully opened to how important all the little things are. Thanks Sayler for helping us see!

Wanted to share a couple of my favorite poems...

I had this poem given to me by a wonderful friend who helped me when we first found out about Sayler. Love this poem. Could not put it any better.

Welcome To Holland
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



This one was given to me by another good friend when we had Jaxsten. I love this one as well.

Heaven's Special Child

A meeting was held quite far from earth. It's time again for a special birth. The angels said to the lord above, "This special child will need much love."
His progress may sometimes be slow, Accomplishments may not always show. He will require extra care from the folks he meets down there.
He may not always laugh or play, His thoughts and needs will change each day. His life will be filled with struggles and trials, So cherish the blessings with each smile.
So lets be careful where he's sent. We want his life to be content. Please Lord find a family who will do a very special job for you.
They will not realize right away the leading role they are asked to play. But with this child sent from above comes stronger faith and richer love.
And soon they'll know the privilege given in caring for this gift from heaven. Their precious one, not always meek and mild, Is heaven's very special child.

- unknown

The Farmers Wife

Being a farmers wife has it's rewards but also has it's disadvantages. Because of our circumstances with our kids I believe it is a blessing. The Sun up till Sun down thing becomes very annoying. It will be 10 years this year that we have been married and I have still not gotten used to it. It's at that time of night when kayos starts. The kids are all hyper and making messes and I begin to curse the farming life. I start daydreaming about how wonderful it would be to for Tyler to have a 9 to 5. All the things I could get done. Especially if he could be home on a Saturday. Then I awake to reality and we continue with a couple hrs of crazy. It is after the crazy and they are all to bed that I begin to reflect on the day and realize how much he really does for me. First off my husband from day one of our first child Jaxsten he has helped change diapers. Because we have been with the diaper thing for eight years now I truly appreciate this. A great advantage of the farming thing is when I really need him he is there. There is so many times I am stuck somewhere or running late and the kids need to be picked up from the bus and I can call him to my rescue. Often he takes them with him on the farm when I need. One of the greatest blessings is when we have an emergency with the kids or have to spend some time in the Hospital (which happens more than we would like) He is always there with us. He is a WONDERFUL dad. He is good with his boys and great with his girls. He and Sayler have a special bond. He can get her to do or say things no one else can, and she loves kissing daddy's hairy face. It takes a very special man to raise special kids. All in all I feel the good out does the bad. I appreciate all the hard hard work he does to keep the bills paid and food on the table. All the freezing or hot temperatures he endures and the long hard working hours. I am so grateful for my husband and all he puts up with...ME. I'm proud to be The Farmer's Wife.

                            

"I would rather have 3 min of wonderful, than a lifetime of nothing special."

It is CHD Awareness week this week. 

 We had our "Celebrate Life" party last night. It was so fun to gather with friends and family to celebrate the life of our two little CHD survivors, Jaxsten and Mckinzee.

What a wonderful day!

Cupcakes Grandma Ann made and Sayler decorated

All the little friends and cousins that came. Except for Sayler, she didn't like the loud noise so she wasn't in the picture

Jaxsten and Tyree

We are so blessed to still have both our two here with us today. I am so thankful for the great doctors we have. I am also very thankful for the technology that is available today. My Kinzee and Jaxsten have been through so much. They are such a blessing to our family. I'm so thankful that my Heavenly Father has in trusted me with such sweet little spirits.



Where is the rest of your heart?

I came accross this story and wanted to share.

Its a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels say to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay". The angel smiles and says "I guess that will work". But the little angel is still a little scared. He asks "will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again" Always remember that you are not broken, just torn between two loves"

Pinewood Derby 2012

"If you are helpless, He is not. If you are lost, He is not. If you don't know what to do next, He knows. It would take a miracle, you say? Well, if it takes a miracle, why not?"

~President Boyd K. Packer~

It was Jaxsten's first Pinewood Derby a couple weeks ago. He was so excited to make his car and race it. He kept telling us that he was going to win first place just like his cousin Kaysen. A couple weeks before the race we got started. We drove over to Great Grandpa Earls and him, Grandpa Jim and Dad helped cut it out. The next weekend Jaxsten and Tyler sanded it down and the plan was to paint it a couple days later. That Monday Jaxsten got up and headed off to school. He was perfectly fine that morning laughing and joking with all of us. A few hours later I got a phone call from Tyler telling me that he had just gotten a call from the school. During recess Jaxsten started complaining of his heart hurting. Recently we had been getting phone calls from Jaxsten crying wolf so my first thought was that of frustration. I was ready to chew him for another fake sic call. I then had a feeling came over me that this was not a cry for wolf, so quickly I headed to the school. I got there and as I walked in and saw him and immediately knew that something was not right. He did not look good. I quickly got him out to the car and on our way to the nearest ER. By the time we got there he was moaning in pain and within the hour he had a fever of 104. We did the whole workup; labs, x-rays, etc. We found he had an infection, so they quickly started him on antibiotics which meant another stay at the hospital. Tyler and Grandpa Jim arrived later that night to give him a Priesthood blessing. The first 48 were a little scary for us I could not wrap my head around this. He was perfectly fine a few hours earlier and now he was so sic and in so much pain. After about 48hrs. things started looking better but we still wasn’t sure where the infection was and how he got it. It was looking like he had an infection inside the heart. He was responding well to the antibiotics so the plan was to keep him there until the fevers were gone then send him up to Primary Childrens for an echo. Realizing he would not make it home to race his car Jax came up with a plan for him to get it all ready and for Staten to race it. Tuesday he muscled up the strength to finish his car with the help of myself, Tyler, and the great nursing staff (aunt Lorraine) at the hospital he pulled it off. Staten and dad went off to the races. The car could not be beat!! First place. Both boys were so proud. Metals for them both. We could not be happier. The next day the Doctor let Jax come home. We continued his care as an out patient each day and then first thing Monday morning we went up to Primarys to see his cardiologist and for an echo. We found his infection was on the outside wall of the heart. Good news I guess, because the cardiologist told us that he has never seen a good outcome with single ventricles and infection in the heart. He was amazed at how well he was doing and praised us for getting him on an antibiotic so quickly. I am so grateful Tyler could give him a blessing. I am also grateful for that small voice telling me to get him in there. I’m not sure what would have happened if I had not listened and took him home to watch for a few days.

Sayler sat down on the rug at school on January 11, 2012 & spelled out Monster's Inc. all by herself. Truly Amazing!! Words can not describe our excitement!! We are so very proud of all she has accomplished. She has worked so hard.