Ashes....

Things have never come easy to me....ever. It seems that we have had to work hard for and earn everything we have.....and in a moment, a blink of an eye.....it can be gone. It took several minutes for it to actually register in me when my husband phoned this evening with bad news....news that someone had broken in to our trailer, and then burned it to the ground. We had nothing of incredible value there, but we really don't own much of value and as I said before, we have to work hard for everything we have. The one thing that trailer was for me was my peace, my escape that rejuvenates me when I have had all I can take, my solace...and our back up plan, a place to go if all else failed, and it is gone. I feel violated beyond consolation. It doesn't matter that it was insured any replacement will just leave me waiting for it to happen again. My little desert oasis hidden from the world was found and desecrated by a stranger who didn't look twice....he didn't take notice of four little winter coats that kept my children warm...he didn't take notice of the stocks of medical supplies that are used to care for my little boy, his special chair...probably the most expensive thing up there. He helped himself to our food storage...and sleeping bags that we had to save up to buy. One set of footprints in and out....such disregard. It was just a thing, the trailer, to him. But it was more to me, and I feel violated...empty....broken.

Being Sensitive....

So, I don't want to pick on anyone, and I do understand where people would come up with the ideas they think....but I rather think it is wiser and more prudent to ask before assuming. Just because a child (or anyone for that matter) is disabled and physically not able to speak does not mean they are mentally handicapped. If there is ever any question about my son's condition and what he is and is not capable of, please do not assume, just ask.

His Official diagnosis is: Choreoathetoid Cerebral Palsy

This means he has a "movement disorder" related to damage in the basil ganglia and Hippocampus areas of his brain, this manifests in low muscle tone and coordination, uncontrolled movements, difficulty eating and difficulty with speech.

This is what he can not do at this time:
Eat enough to get the nutrition he needs by mouth (he is fed through gastrostomy tube)
Sit unassisted
Walk
Talk (limited articulation make it very difficult for him to be understood)
Assist in self help activities such as feeding, dressing etc.
Toileting is quite uncomfortable due to his low trunk strength, though he is fully aware of when he needs to go the the bathroom, so he is diapered.

This is what he can do:
Understand concepts appropriate for his age.
Answer yes and no questions verbally
Drive a power wheelchair using a head controller
Follow directions
Read (though we are not sure what level because of his limited speech and fine motor coordination)
Use a touch screen communication device
Identify letters, numbers, words, etc.
He understands right and wrong as well as consequences.
Communicate non-verbally through gestures and expression most of his wants and needs.

I am sure this is not a complete list....but just the very basics. So don't assume, just ask....

Summer Raffle

Time for a Raffle....

To welcome in summer!

For every $5.00 spent on new orders as of Friday, May 14, 2010 (excluding shipping).

You will obtain one entry for a drawing being held on June 4, 2010.

The prize is this beautiful hand sculpted One of a Kind 6 inch polymer clay baby.

This sweet baby girl has a full sculpted anatomically correct body and full sculpted arms and legs that are jointed at the shoulder and hips.

She will come dressed in her beautiful hand knit layette and tiny diaper.

She will be shipped to the lucky winner via priority mail with delivery confirmation.

Winner will be notified by email on their customer account!

Good Luck to all!

Please visit http://www.brightcreations.us to place an order!

Mother's Day... Sigh....

Well Friday evening I felt a familiar and unwelcome pain starting in my right ovary, quickly getting bad enough that I didn't dare lift Ethan from his wheelchair to his bath bed to change him. I don't usually take pain medication for anything...not even after my c-section over 5 years ago, my one and only surgery, but I knew what the next few days would be like if I did not reach for the Vicodin. It left me in a fog for most of the day yesterday and that played havoc on my mood, so by yesterday evening I settled down with a book to ease my restlessness. It was nearly 10:00 pm when I found myself to the point of no longer being able...or wanting to keep my eyes open and I said goodnight to my husband and crashed in our warm comfy bed. Sometime in my unconsciousness, Terry had gone out to the store, to get ingredients for a dinner surprise he had planned. I had sworn he was in bed next to me snoring when the dogs were fussing at the nearly closed bedroom door and I stirred wondering if they need out to go to the bathroom. I was started to hear the beeping warning the security system made when ever one of the doors opened and I thought someone was in the house. I turned to find his snoring, sleeping body in our bed, but what ever apparition I previously saw and heard there was gone and the dogs were wagging their tails as there master returned home from his midnight excursion....so the gig was up.

I dragged my unwilling body to the kitchen where he eagerly showed me the spoils of his late night adventure and told me of his plans for my Mother's Day dinner. I was thrilled, even though it was normal for him to prepare Sunday dinner while I took the children to church....he has no idea what this small gesture means to me. I don't remember what I said to him, still very much wanting to be in bed sleeping and soon I must have found my way back there because I remember nothing else until first light this morning. It is in the quiet solace that I enjoy my mornings when the summer is almost here and the sun is rising much earlier than anyone else in my house would like to welcome it, but it is in these quiet moments that I find the strength I need to get through the day....my best days are when I am up before everyone, collecting my thoughts and enjoying the brief moment of peace.

Memories of Mother's Day Past....




And Mother's Day Present:






I feel so very blessed today!

Resigning myself to the fact.....

....that youth is gone....I reach to grasp it and find I come back empty handed.

I can't say that I am sorry though I do miss it just a little....so here it is, middle life. A little sad that my arms will never cradle a newborn that belongs to "Me". But ever so grateful that I won't have those tired days after I have been up all night trying to sooth a fussy baby. And not quite looking forward to children in their teens, though I am getting my first tastes of it from an almost 9 year old boy who is trying very hard to make it very clear that despite his complete dependence on me he still has his agency....I hate the consequences....when I lost it after he got angry and kicked me with his "body armor" (AFO's) on....it hurt really bad and I made sure he knew it, the felt horrid for shouting at him as loud as I did. I would like to think it is an isolated event, but I know it's not as this behavior is becoming more and more common and it shocks me every time, even though I tried to prepare myself that this time would come....

I find myself wanting to spend more and more time up on out land, so my kids will at least have a chance at some of the freedoms that I had as a child. I hate how they are confined by the conditions of modern society and as much as my desire for "community" is strong, I cringe at the thought of letting my kids out of my sight in our "city home"....I hate the fact that they have not been given the liberty of a sleep over at a friends, things that I know I enjoyed as a child, at least when we are on our land they can run free without much worry and they are not confined to home. I find myself looking forward to when they are grown and they are responsible for themselves and at least comprehend the enormous responsibilities on their shoulders. I both look forward to and dread the whole high school experience, which I fondly remember in my own life was more of an escape than a challenge an escape for the reality of my life at home which was troubled and I hope beyond hope that it is not an "escape" for them as it needed to be for me because I truly enjoyed much of my teenage years and keenly I am aware of how different my children are from me and how I was.

Just lately I have been trying to reclaim some of the simple pleasures that I had then that I lost while growing up, things that were my saving grace back then, like my music and my writing....I find myself needing those escapes right now with the added stress the court system is in my married life with raising a child with incredible physical challenges. I feel violated as a parent by them, sometimes that I have no rights at all, regardless of how good of a job I am doing, and the fact that I know my child better than anyone or the fact that we truly do have his best interests at heart. This makes me incredibly angry, and it strains my marriage because there is nothing me or Terry can do about it, short of giving up everything we have works so hard for.

I also struggle spiritually, knowing who I am, and where I want to be and dividing myself between the nurturing I know I need personally (spiritually) and what I am keenly aware of what my marital and family relationship demand. I need to find a balance....I need to find peace which just lately seems impossible....I love the time my summers give me with Terry and with my children, but this year I find myself dreading it just a little and I feel guilty that I might be being just a bit selfish.

It doesn't help my mood at all that Mother's Day is practically here and it comes with a lot of mixed emotions....in fact that is tearing me apart inside....I am to terribly hurt to just forgive and forget because doing so means letting go entirely and accepting that I never will have the relationship with my own mother that I am so desperate for my own children to have with me.

Youth is gone....midlife is here....35 is just weeks away....and I am going to be fine if I can just find a little peace and accept that not everything can be the way I want it to be.

Don't even want to write....

....because I don't want to be seen as "the complainer"....but feel like I am that person laying on the street who has just been kicked in the gut by a thousand boots of an angry mob.

Easter Weekend

Spent a lovely couple days up north at our land.....so funny to drive through the Arizona mountains in APRIL and see TONS of snow. The kids enjoyed an Easter Egg Hunt on our property and a "treasure hunt" for petrified wood and Indian pottery shards.....even found an arrowhead. They had so much fun, at least everyone but Chloe who decided to sneak way too much candy that she made her self miserable and violently sick. I *THINK* she learned a valuable lesson but we will see. I think we have now decided that we really want to get a move on things up there as it is so peaceful. Perhaps in the summer after we get back from Ethan's Make a Wish trip we will start working on building some buildings for storage and enclosures for animals and gardens so that we can make it more livable on a long term basis. Not that we are planning a move just yet, but perhaps an every weekend escape away from this fast paced life.....it eventually may become permanent though!