Dax..

My dear and much loved oldest son has never been given the easy road of life. I am not sure what life has in store for him in the future I can only hope it is an easier road than he has traveled thus far.
Many things happened this week to him and for him
.As most if not all of you know dax is a pretty high functioning child on the spectrum of autism. For the last few years his major issues have come down to being socially acceptable and the ability to communicate verbally in a way other children and adults can understand. His Developmental Speech Apraxia is the root cause of this. His speech understand ability is around 3 and this is so hard on a child who is roughly cognitively a typical 8-9 year old high energy boy who wants to be liked by his peers. He tries hard to fit in wearing the coolest shades, the coolest vest, and working hard on his hair. Unfortunately he does try too hard and seems to focus on the being friends with the one kid in class who has not been fond of him since kindergarten. This hurts him much more than most can see. This weekend he cried tears of such sorrow not only from this child just not liking him , yet also from the feeling that he is unheard and not understood by friend and teachers alike. Even I his mother fail 30% of the time in the ability to understand what he trying to say. His desperation to be heard and understood is growing with speed his speech is just not able to keep up with, his disorder is hard to treat and his unfortunately considered a severe case. This disorder is neurologically based and past speech treatment which he has received since 13 months there is not any solid ways to treat him.

We have now found a way to help him be understood Its is not perfect, It seems like a miracle that something like this is available.Its called a dynavox

This device is will in so many ways can and I am hopeful will change his life as he knows it now.He was seen this week by a group that advocates and writes the paper work so that kids like dax who cognitively are where they need to be but due to various reasons including apraxia or even cerebral palsy can not communicate in a way others can understand.

Dax played with this device a few days ago and immediately had such a reaction that I wish we had a camera in the room. His face lit up with wonder and delight as he started using this device he immediately looked at all of us sitting in the room and said people will understand me with this. I could not help it all I could do was cry. He knew so immediately what this was for and what he wanted it for. No explanation no resistance just pure happiness that he can be heard and understood.

It will take a couple months for him to receive his own device. we know we have bumps in the road ahead. Getting insurance companies to pay for this can and tend to be difficult.His wait is hard for him right now but once he has that device I see it taking him places he never knew he could go.

My new (used)Van.

We are finally car owners again.  In September our engine died on our car,we had no money so we could not fix it or even replace it.
Thank heavens I have a friend like K. who had an extra car they were not really using and said we could use it until we could get another one.
Thank heavens we have such great friends. To not have a car would have meant taking dax and dallon out of thier school they both need to be in. Dax for his autism and Dallon For his severe Dyslexia most schools offer little to no services for  Autism and even less for dyslexics with the attitude that you can just pay the experts out side of school the 50-100 an hour they charge.
My heart sank when our car died thinking of everything my kids would loose if they could not continue there.
When  my friend K. called and said we could use her car I was over joyed and was on my knees thankfull.

Well this last saturday we were finally able to buy us a vehicle. I have looked and hunted.We knew our budget was not everything we were hoping it could be , yet it was what we had so we needed to make it work.
I am in love with my van
here is Rodrigo :)

Decked to the 9 and ready for what every my kids add to it. we paid 2800, put 900 in repairs and it is in excellent condition.!!

I know this was god's hands in us finding this vehicle. It was well below value and was a blessing for us.

Cinn

How Life has changed....

Life in the beginning of 2009 seemed perfect. We did not have every thing but we had our family and we had our wished for hope of a Little girl to love.

Things changed and although it did not turn out how we expected we made it through together.

Life for us changed in a way that will affect us with every step we take from now on.

At 26 weeks after a near perfect pregnancy ( at least for me) Dharma Eileen Neds was born. She was born early due to a rare form Ecoli like Amniotic Infection that hits acutely and kills often. She was born breathing and kicking, fully prepared to show us what a fighter she was . By all signs everyone even the doctors felt she could make it. With in minutes we were proven so very wrong. After about 40 minutes the doctors came and got derrick and I. They felt she could fight no more. Her body had put up a more than valiant effort and just could not win this battle.

At first they were unwilling to allow me to go with derrick to turn off the vents. They were still afraid this infection would kill me. At that moment NOTHING would have kept me from her side. I think they knew I would be quiet hysterical if they did not allow me to go so they relented. They wheeled me in accompanied by derrick.

This was my first image I saw of her.

I think those moments were almost fog like.The pain is something I can not describe to anyone. The pain stayed with us but as the saying goes Time helps heal any wound.

A few seconds after this they brought her to us and set her in my arms.

( I need to note that derrick in this moment really made a sacrifice I can not even explain to you how hard it had to of been for him. He never took her from me until well after she had passed allowing me that special gift of holding our Daughter for those last fleeting moments of her little life) Those moment with her are something I treasure, Every moment of my day. Feeling her breath and lay on my bare chest made every part of me want to go with her, yet I knew and Know it was not time for me. She had lived as long of a life as she needed and then returned home with honor. I spent the next 2 hours holding her. I honestly don't know why I held her so long knowing she had passed so fast. Yet I just could not let her go. When I finally did I had an empty feeling.

Awhile later my sister and close friend Joan brought the boy's. They saw her for a moment to say goodbye. I wish we had had more time in life for them to see her while she still lived but that just wasn't to be. Dax cried heart wrenching tears, and wanted to help the baby. Dallon asked why and I explained it was just this way for her.

We had a lovely Funeral at Garner Mortuary . We had originally planned to not allow the boys to attend. In the end they needed the good bye and closure that it brought our family.

The months passed and we healed some every day. We are not over it I doubt you can really heal this kind of deep wound.

We found Old friends Like My Sister in Law from my first Marriage ( yes I was married long ago to some one else amazing I know LOL).I got to see my ex-Nephews and nieces. ( though I never divorced them in my view.) Found Out My ex- SIL son had attended my sons school and I had no clue who he was despite having seen him in the library alot!! I even talked to my ex over facebook and myspace ( no I am NOT telling people who he is for his privacy and mine!!) Us talking is proof time heals every wound if you let it.

Basicly we tried to move forward with our lives.

Unfortunately 2009 was not finished with us. In Oct our Nephew Zach Fell Down Topaz mountain in southern Utah and sustained A lot of damage. He fell 70-75 feet Tumbling head over heel. He was Life Flighted to Primary Children's. He sustained Severe Bruising,Dislocated hip, Spine Fractures, And was partially Scalped. Despite all those injuries Zach is mostly back to normal. There is Scarring but for all his injuries it is a true miracle he lived and is living a normal life again.

Now course 2009 yet again did not seem to be finished with us. In Late November my sister Joan came down sick with that Infamous Swine Flu. Ended up In ICU with Pneumonia. She came terrible close to death and scared us all half to death!!! I have given her strict orders to NEVER DO THAT AGAIN!!!! She finally pulled through after a few weeks in the hospital. We are all glad to have her home.

2009 closed quietly and with out much HOWRAH.

What I learned from it will stay with me forever. Love can get you through everything and that family means EVERYTHING to me.

2010 Is going. it has not been easy but who said life was easy.

On January 6Th We had to have a D&C due to another miscarriage.

It was hard but no worse than what we have seen before and Yes we are okay.

We are survivors and we are a family that Plays and Stays together.

Life continues even when you wish it wouldn't. I love my life and have great hopes and plans for our future. I am loved. I am blessed. More than people can see I am happy with all life has given to me. Even if I didn't get to keep it all.

Cinn/Joy

2 boys cute as can be
1 hubby still in love with me
1 little angel gone to soon