To the Doctor

Lately my little Sayler has been bursting into these dramatic real tear cries. Just all the sudden. I was not sure what was going on because I can't just ask her and have her tell me. At first I thought just maybe it was the stress of starting at a new school, but as time went on and it continued to get worse not better I started to get more concerned. So I finally called and made the appointment. Knowing exactly what I was getting myself into. I'm certain that is why I put it off as long as I did. Anyway...it did not go well. I felt so bad for her. We had to do ex rays,  fighting and sweating. Then we drew blood, fighting and sweating. THEN we tried to get a urine bag on and I have to laugh now ( but was not laughing at the time) Both the nurse and I were on the floor fighting a 6 year old that was a whole lot stronger than the both of us. We did not win that battle!!  I kept thinking about it and I think that if I  was in a foreign place and all these people were holding me down trying to do things to me which I have no idea what they are doing. I would fight like crazy too!! Miss Kinney also had to get blood drawn. SEVERAL times. She is just so little it was hard for them to get a vein, but she was a trooper. She is a tough little tike. Anyway, still didn't find out for sure what was wrong with Sayler but we have some ideas. She had to get a shot :( Poor thing I think it was more traumatic for her than myself and it was one of my worst days!!!

WHILE YOU WERE STARING

By Jessica Hill


While you were staring
you could have picked up my purse.
I dropped it while my son was crying.

And while you’re at it,
could you muster a smile,
because my son is really trying.

While you are huffing
and rolling your eyes,
could you understand that
loud noises catch him by surprise.

While you were judging
my parenting skills,
you failed to realize
how my son really feels.

While you were whispering
“that child is a brat”,
You missed what
caused him to behave like that.

If you would stop
and take a minute
to open your mind,
a child who is lost
in a world of sounds, sights, and smells
is what you would find.

Lending your hand or an understanding smile
would make the life easier
for someone raising
an autistic child.

Crazy! Crazy!

Yes. Another CRAZY day in my world of Autism. Last night Sayler discovered my washer. I was just putting some clothes in to wash and Sayler came in. She needed something from me and she will not stop pulling on me until I get what she needs. I decided to distract her for a min and asked her to help mommy with the laundry. So we put the clothes in and then the soap and turned it on. I could tell she was fascinated with the bubbles it was making and I needed to take some clothes out and hang them on the line. She usually has a melt down when I walk out the door without her so I thought if  the bubbles could distract her for a min we could avoid the melt down and the destructiveness that usually comes with it. See I can't take her out with me because I have to watch her at all times and I couldn't do that and hang clothes. So I left her to watch the washer and hurried out to hang the few things I had. I walked back in and found her still looking at the bubbles but about fifty times more bubbles than normal. Yes she had noticed that when I put the soap in there was bubbles so she took it upon herself to but the whole new bottle in this one wash. Needless to say those clothes after about 5 washes and rinses are REALLY clean.
So back to the CRAZY!! This morning I got up early to head up North to do some errands and lunch with my in-laws. We left really early and had just gotten home. I went in the Kitchen to put some grocery's away and went to the computer to check for an email I have been waiting for. Sayler walked in to get me for something again and as she kept pulling on me I smelt that very familiar smell of BLEACH!!!
Yes all my kids' new school clothes that got washed five times yesterday are now white. (tear) I need a house that can be Sayler proofed!!
I still love my little Angel!!

Back to School

Another school year has begun. I cannot believe how fast this summer has gone by. It was a good summer but I can honestly say that I am happy to be back on a schedule. Not only for Saylers sake but for us all. I think we all do a little better on a schedule. I have had a really hard time worrying about this school year. Last year we had Sayler up to a private school. It was a wonderful school and she did great there, but it was so hard on the rest of us. I was gone all day and by the time I got home I would fix dinner and then it was time for bed. I felt like my other kids were being neglected. So when it came time to make a decision for this year we spent a lot of time praying and pondering on it. We are praying still that the decision to keep her here will work out. So far she is liking it. We had a hard time on the first day. Just because it was all new and we were learning what was going on. I stayed up till after midnight the night before putting together a photo schedule for her so that she would have an idea what was going on. It seemed to pay off because once she got on the bus she was fine. Jaxsten is way excited to be in second grade. Which I cannot believe. I am so grateful he has stayed healthy enough to go because he does love it so much. Now its just me, Kinny and Staten. I'm so happy to be home and to be able to give them both some time. They are both so full of life. We are going to have some fun.

In Loving Memory

Last month my beautiful Grandmother passed away. It has been so hard for me. I find myself thinking of her often. She was such a beautiful, amazing, loving women. I am so blessed to have her as a Grandma. I am also so thankful for the wonderful mom she was because she raised the most amazing man, my dad. I'm once again very thankful for my Savior and the sacrifice he made so that I may once again be embraced by her loving arms in heaven. I find so much comfort in knowing she is up there watching over and helping me through my everyday trials. I feel her.

My heart goes out to my Grandpa. I know how much he misses his sweetheart. One thing that they both have taught me is that true love does exist. I loved how in love they were and are with each other. Grandpa and Grandma have the most amazing love story that started one night at a dance and continues to this day. Every year at our Family Reunion which happened to fall around there anniversary, they would dance together to their song "Could I Have This Dance" by Anne Murray. I love that song.

To my Grandma: I love you more and don't forget your promise.

Raising a Star

This summer we also had the opportunity to have Jaxsten hang his star for the Make-A-Wish. He had received his wish a few years ago. We had just never taken the time to hang his star. It was such a wonderful experience for us all to share with him. We got to the wish house and they first had us go upstairs where Jaxsten could write down his wish to put in the wishing room. All of us got to also write down a wish for anyone in the room. Then as we entered the wishing room we all shared our wishes for each other out loud. Most of the wishes were for Jaxsten. A few was for others, my daddy's wish was for me. Jaxstens wish was that he could be with his daddy forever. As Jaxsten read his wish a huge stream of emotions came over me. I think because I understood what he was wishing for. He wants to be healthy as well. The older he gets the more I think he is starting to understand. I worry that he will get scared and I don't want him to be afraid. But as I stood there thinking I was comforted because I quickly realized that his wish would come true no matter what the outcome. Because of the Atoning sacrifice of our beloved Savior, Jesus Christ. Because Tyler and I and our children have been sealed together for time and all eternity. Jaxstens wish can come true. He can be with his daddy forever.

Once again I was feeling so blessed and grateful. Grateful that our Heavenly Father has in trusted me with these special little spirits, and blessed that Jaxsten has been so healthy this far in his journey. What a wonderful experience for us all.

Thanks Make-A Wish

Camp Hawkins

This Summer i had the privilege to volunteer at a wonderful camp for children and siblings of kids with Congenital Heart Defects. Camp Hawkins. It was named after one of my heroes Dr. Hawkins. He is the surgeon who preformed all but one of Jaxsten's open heart surgeries. He passed away from Pancreatic Cancer a few weeks before camp. Seeing all those special kids enjoying camp (because of him) was such a great tribute to a great man.

It was so much fun watching these kids enjoying life. It was the highlight of my summer. They are all so special. It was fun meeting new friends and parents of kids with CHD. The volunteers were some of the neatest people. Jaxsten keeps talking about his buddies at Camp Hawkins.

One of the neatest things was watching Jaxsten and Trey. When Jax was born and awaiting his first surgery at PCMC. I met one of my dearest friends Robbie (Trey's mom). There was 4 HLHS kids all there at the same time. All of us moms grew so close that month. Robbie was one of the moms and we have stayed in touch. When the boys turned one we had a big birthday party together. Then we all went to the Zoo together. It had been a while since the boys had seen each other. It was amazing to me how they immediately acted like long lost buddies. It was fun seeing these two boys that were at one time fighting for their lives together, now enjoying each others friendship and comparing battle scars at Camp!!
I can not wait until we get to go back next year!!