Sunday, May 30, 2010

I don't do well in crowded places....

I know it is a strange title for a post about my little boy's Baptism, but I hope I can explain adequately.

Yesterday was a very special day for our family, especially Ethan, the day of his Baptism. It is a day I did not know if I would ever see. Religion and faith has always been a touchy and deeply personal subject, even more so since I chose a husband who was raised in a vastly different way, faith, culture and country and it has never been something taken lightly (which I am deeply grateful for!) In my chosen faith, children are baptized generally when they reach eight years old. It is recognized that at this age children really start to make choices on their own and should have learned right from wrong and what it means to be responsible for their choices. For my husband, deciding ones religion, I think is a very adult choice, something I don't think he thought one would be mature enough to make at such a tender age. Not so long ago, he was resolute that our children were not going to be given the choice until they were older, perhaps, I think, until they were 16, when they would be legally an adult in the UK. I knew one thing, and that was that he thought eight was too young, and there are very few things in this world that can change the mind of this stubborn man I so deeply love.

Several months ago (perhaps quite longer, but this is when I really started to notice it), Ethan, who was already eight, started to express, in his very limited communication, how strongly he felt about baptism. More specifically that he WANTED to be baptized. Every time the very word was mentioned he would start dancing in his wheelchair, turn to look at me with pleading eyes saying "I want..." one of the few phrases he is able to articulate. I noticed at this time, just how frequently baptism was talked about. I told him that I knew what he wanted, acknowledging that I understood, but that he needed both parents permission and that his daddy did not think that it was a choice that children his age should be making and that he should talk to his dad about it. I fully did not expect the events that would transpire in the matter of days and hours that would follow, that adamant opposition would end in a change of heart, that my husband's greatest weakness (or strength, however you choose to look at it), this very special little boy, had the power and conviction in him to change a resolute mind. Now I really don't think it was just Ethan alone, maybe angels, but I definitely believe that fasting and prayer played a part in it, and faith above all else....and believe me when I tell you this little boy's faith truly did move mountains!

He talked to his dad, mostly with his eyes, and those few short words said in the purest sincerity, "I want...". It wasn't even slowly, though it seemed in slow motion, he went from the answer, "when you are 14," to "when you are 12," to "when you are 10," Ethan's eyes must have been so pleading speaking to my husband's heart, because then something I completely did not expect happened, he said, "I can see this is something that is very important to you, and you have been so persistent that I know you really want it, so I know it is what you really want, so you can be baptized if you want."

You have never seen a more happy and excited boy.

A lot transpired between then and now, but yesterday was the day. Nervous and excited rolled in to one neat little package and I had to put it in the Lord's hands because it was beyond my capacity to handle everything, to contain all that was going through me. More people came than I expected....but despite a large turnout, the room felt unusually packed, and me in crowds don't usually mix well....perhaps I have a social anxiety disorder....generally I would have the urge to bolt, but I was at peace in this room that was so full of love and support, surrounding this little angel, who was the one person in the world that could open the door for his brother and sisters to make the same choices for them selves if they decide they want to. I often wonder what his mission and purpose is in life, and I KNOW WITHOUT A DOUBT IN MY HEART that THIS was one of his important missions, one of the reasons he was sent here to bless our lives, just one more thing to convince me that we are never alone, we are always in the presence of angels, even angels unaware.

Monday, May 24, 2010

Who would have thought...

...harvesting potatoes would be like a treasure hunt for a 5 year old!!!! I can't believe how many little potatoes 5 potato plants will to replant all the ones that are too small to eat.



And after...

I am still tallying the figure for what we lost and it is in the ball park of $12,000. including the trailer (at least that is what it will take to replace our losses I think)....but I am dealing with it. They are pretty sure they caught the arsonist, who also burned another property up there. I actually think it helped that I spent the day yesterday sick in bed, so I had a lot of time to think, and at the end of the day, it was only "things" nothing irreplaceable. And I know the feelings of being violated and vulnerable will still be there, but I also realize that that is just something that happens in our world that is full of both good and evil, but I also realize it could have been much worse and I am so glad it wasn't!

Friday, May 21, 2010


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 can be gone. It took several minutes for it to actually register in me when my husband phoned this evening with bad 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.

Sunday, May 16, 2010

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
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....

Friday, May 14, 2010

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 to place an order!

Sunday, May 9, 2010

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 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 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!

Thursday, May 6, 2010

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 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) 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 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.