Making memories one day at a time.......and then I write about it.

Monday, December 24, 2007

Christmas present

Today is Christmas Eve. I was given the best Christmas present ever. Levi walked up to me and gave me a hug and said, "I love you mom"!

He has NEVER done that before!

I'm on cloud nine today!!!!

Sunday, December 16, 2007


Well.........I wasn't prepared for this! Brian and I were upstairs wrapping Christmas presents and as we were comparing some of the gifts I realized that we have once again hit another milestone. A lot of Jadon's gifts are older than Levi's..............Jadon is receiving gifts that are beyond Levi. Levi wouldn't be able to figure them out.

Then again, Levi's gifts aren't typical. He doesn't really play with toys but loves things like caribeners.....containers to carry things around in.........rope and string........

Brian found him the cutest lunch box that is from the movie "Cars" that has two compartments in it so Levi can carry all sorts of goodies around in it.

Anytime we can't find things we know to go and look in Levi's "stashes" like missing car keys.........packages of Top Ramen noodles..........anything he isn't supposed to have. ;o)

No grey. Just black and white.

On Sunday's we have the rule no t.v. Before Levi the rule was no regular t.v. or movies on Sunday. The kids could watch church video's or educational video's like DK video's on Sunday but that was all. Levi for the longest time wouldn't look at the t.v. screen. He couldn't watch a movie. I'm not sure when he started to watch the t.v. screen. He still has a hard time sitting through an entire movie. Well........most. He loves the movie, "Cars" but even then he bops around the room taking it in in fragments. Anyway, all of a sudden he has become obsessed with movies. Certain ones that he plays over and over and over again. Part of his autism coming out I guess. A lot of repetition. Every Sunday we go through the same thing. He runs down and turns on the t.v. and I have to tell him, "Levi, no t.v. It is Sunday" and he yells and says, "it is NOT Sunday" and then he eventually turns off the t.v. The other kids have said, "but mom he can watch DK movies". I have had to explain to them that Levi doesn't understand which movies are appropriate for Sunday and which ones are not so for him there is absolutely no t.v. on Sunday. It is too confusing for him.

I got to thinking about that this morning as Levi once again tried to turn on the t.v. and we went through the usual ritual. I think the "black and white" applies for all of our kids. So many times we make it harder for them because we allow shades of grey. Obviously some things present themselves as grey on their own and have to be taken into consideration but for the most part I think things can fall under the black or white category and we make things harder on ourselves and our kids by allowing or presenting grey.

A great big hug!

I can't remember how many hugs a day "they" say a child needs a day but with seven children I know my kids aren't reaching their quota's. Especially when you have a child like Levi who won't look you in the eye longer than a second let alone let you hug him. That is........didn't used to..........The most amazing thing has happened in the last couple of weeks. About two weeks ago I had been out somewhere and came home. As I walked in the door Levi came running up to me, gave me a hug, and said, "you're back"! I was so shocked! I tried to grab him and hug him back but he was off and running and I thought what an amazing and wonderful gift he'd just given me. Since then he has continued when ever I come back in the front door even if I've just gotten the mail.

He'll come running up to me and wrap his arms around my legs and rest his head against me for a second and then he is off and running around again. As I said at the beginning of this post, I'm not sure how many hugs a day you're supposed to give your kids but I can tell you my Levi can't give me enough hugs. I feel as if I'm a dry sponge soaking up every drop of his hugs that I can get. I pray he continues and that this blessing I've been given will last forever!

Sunday, December 9, 2007

Snips......snails.......and puppy dog tails.........

This morning Levi, Kirsten, and Jadon were playing. Kirsten and Jadon were down on hands and knees and Kirsten said, "we're puppy dogs"! Levi was standing next to me and said, "I'm a hot dog"! :o)

Later we went to church and Levi as always carried a bag of sorts with him. This time it was his brother's school lunch bag. We got to church and Levi held the bag on his lap. He looked at me and said, "I'm hungry". (First clue) I asked him what was in his bag and he guarding it said, "nothin". (Second clue) I unzipped and looked in the was full of bologna and hot dogs............."

Monday, December 3, 2007

Levi's Halloween costume...and Julie's

I realize this is a little late but I'm just now figuring out this photo thing-a-ma-jigger. Brennan had the idea of Levi dressing as Scooby and Julie as Shaggy..........Julie was a good sport and aren't they just the danged cutest things ya ever saw???

Poor Julie looks like she is looking at Brennan saying, "please save meeeeeee". And of course Levi has a rope in his hands. Always a string or a rope. :o)

I added photo's!!!!

How cool is this? I can add photo's. Okay, so I'm not very good at it with the obvious double picture of Levi up top and some that are sideways but hey, I'm learning here! Which is amazing considering how NOT technical I am.......
The first two photo's are Levi "helping" carry the Christmas tree, the rest are of him playing in the snow with his sister Kirsten. He cracked me up with his hat down over his eyes. To see he'd have to tip his head up.

Sunday, December 2, 2007

It Snowed!!

Yesterday morning we all awoke to SNOW! Finally! As soon as Levi saw the snow he asked if he could go out and play in it. Have you ever seen the Normal Rockwell paintings of the little boys with the freckles across their noses, a few missing teeth, rosy cheek's, and the look of absolute joy on their faces? That is what Levi looked like yesterday. He had a ball. He and his sister and her friends had a snowball fight. He came in after looking even rosier saying, "I fight snow mom"! It was adorable.

Friday, November 30, 2007

Hard facts

Before I start this post I want to say that this isn't a "woe is me" post. It is meant for the "if" someone someday comes across it that has a child like mine they can read it and realize they are not alone.

As I've stated in previous posts when Levi was a baby he would cry non-stop unless I was holding him. His body didn't feel right to him. When I held him, it stimulated him and I was/am his center pole in his life. I do a big no no with my babies. I sleep with them. From the very first day I brought Levi home when he was so tiny tiny I would put him in bed a few inches away from me and even being a newborn something in his little body told him he needed physical touch so he would squirm his little body over to mine until his forehead was touching my skin. Usually my neck. I would move his little body away and he would work his little way over again. This has been a pattern for Levi and I think even though I don't know exactly what but that there is something significant in this. Levi has always needed his forehead against skin. Part of what he has does involve migraines. I do believe there is a connection. I have learned although awkward that when he is having an attack to literally take my forehead and press it against his.

Levi never played with toys. He wouldn't look at a t.v. or computer screen. He would get into everything! Because he wouldn't play with toys and still doesn't he gets into things. Cupboards, drawers, etc. This sounds terrible but I lived for his naps and bedtime. He doesn't take naps anymore but I still live day to day for his bedtime. My brain can finally rest. Well, as much as a mom's brain can rest when your ears and senses are still perked listening. Because Levi has never been able to tell me if he is hurting, if something is wrong, I have literally had to tune my every senses into him. I do not ever rest. Even at night when we are sleeping. He has a certain moan and cry that will jerk me out of bed running to his room faster than anything and that is saying something because I am not a "get out of bed" person. :o)

I have never had to have my house in such lock down as we've had with him and as he's been able to figure out locks we've had to either move them higher or change them and make them harder. Major fire code breaking in our house. There are several rooms his included where the door locks from the outside so that he can be locked safely in his bedroom for the night and even then my ears are always perked "just in case" he were to get out of bed.....wander downstairs....and out the front door which has major locks on it! We have learned that there isn't any lock that can keep him out (or in). He has figured them all out, they just delay him so that I have time to get to him.

Levi has been drawn to certain things for stimulation. Beings as this is our first experience with a child with disabilities and on the autistic spectrum we've had to learn as we go and did not realize why he would do certain things and then when we found out were mortified. Example: most children carry around a blanket or stuffed animal. Levi would carry around the cord to my electric frying pan. We did not realize that he would shock himself from time to time to help stimulate himself and make himself feel "normal". He would also walk up to a wall and start banging his forehead on it. Water has always been a huge draw for Levi. Big stimulator! Because I have a fridge with a water spout on it my kitchen floor was always covered in water. I couldn't keep him away from it. After awhile we found a compromise. I would open the dishwasher and let him get water from the fridge and pour it into the dishwasher door which would then drain into the dishwasher. Now he pulls up a chair to the sink and plays with the water in it. He likes the sprayer though so we still have a kitchen covered in water from time to time.

Through therapists we learned to swing Levi and other therapeutic activities. Jumping and climbing. We bought him a little trampoline and bought expensive swings that hang in doorways. Before going down for naps or bed he swings for fifteen minutes. It needs to be the front to back motion. Now that he is older he rides his bike to help stimulate and he rides everyday for hours. He loves his bike. His dog also helps stimulate.

A lot in my life came to a hold when Levi came and even more as he became mobile. I could no longer sew or do the hobbies I'd been used to. Levi has always mimicked everything he sees. The second I would turn my back he would grab the scissors. It felt like he was drawn to anything you didn't want him to have. Anything dangerous. He would try to "help" cook and would open the oven. Now perhaps you understand why I have lived for those times when he is safely asleep in bed. I can not describe the level of being aware and on heightened alert I've had to be with Levi to keep him safe.

When Levi gets sick he shuts down. I do not know if it is because he spends every day of his life fighting and so when he becomes sick it is just too much. I do not know but he does and it scares me to death. He stops drinking, eating, etc. He just closes his eyes and lets himself fade away. The first time I realized this was when he was little and I was nursing him. He became sick and shut down. I continued to pump my milk and freeze it because he wouldn't nurse. In the middle of the night after this had been going on for some time I sat holding him and thought, "if he doesn't nurse in the morning I'll take him to the doctor's" and the thought immediately came to my mind, "if you wait until morning it will be too late". I started pumping fresh milk and grabbed my baby and with a syringe started to shove milk down his throat. After a bit he started to respond and like the starved baby that he was he started to gulp down the milk. I spent the rest of the night switching between my milk and electrolytes drop by drop until morning where I did then take him to the doctor. The doctor told me that yes, if I had waited Levi would likely have passed away from dehydration. The number one killer in babies. Once the organs start shutting down they can not restart them.

Food has been an issue with Levi as well. He wouldn't eat. I didn't realize this was part of the autistic behaviors but I would get so frustrated trying to feed Levi. He just wanted my milk and so I felt strongly that I needed to nurse him a lot longer than I did any of my other children. At this time I still didn't know what was wrong with my baby......just that I had an extra fussy baby that was developmentally delayed. We didn't get his real diagnosis until a couple of years ago. We lived with this huge dark doorway that housed a monster that we knew learked in that doorway but couldn't quite see it and no one else seemed to be able to. I wanted to scream, "there is something really really wrong with my baby". Why couldn't anyone tell me what it was! If I knew what it was I could deal with it but not to know what "it" was. How do you fight that? Maybe that was why I fought so hard for his dog. Because at least I felt like I was "doing" something. Who knows.........I got so tired of people trying to convince me that Levi was normal. I wanted to scream and shake them. NO HE ISN'T! SOMETHING IS TERRIBLY WRONG!

We've learned a lot over the few years we've had Levi. Things have changed a little. He eats now and he doesn't have the melt downs he used to have. He doesn't have the anger and frustration as often. There was awhile there that I held the terror in my heart that because he was so violent would we have to place him in special care? My heart was ripped in half when that thought occurred to me one day. I told Brian I'd rather he die than to put him somewhere other than in my own home. Levi is such a big boy and being only about two to three mentally but in a big solid body has been murder on me physically. He still wants to be carried sometimes when he is tired. Walking a long ways is hard for him. Which is funny considering how many hours he'll ride his bike. When he has his attacks because he can't move, while he is throwing up I have to hold his upper body and head up. When he has a meltdown I have to physically restrain him so he won't hurt himself. Thankfully he is doing much better. Before we were having meltdowns several times a day. Not because he is naughty. My poor baby can't help it. He doesn't feel right. He doesn't understand and he can't communicate to me what is wrong so I can make it better. The hours the two of us have sat sweating wrestling while he has screamed and cried thrashing his body around as I have held him trying to keep him safe.

Levi doesn't understand danger. Another reason he can't be left alone. He is getting better about boundaries and staying out of the street but he doesn't understand he needs to stay out because it is dangerous so he doesn't always adhere. Something will distract him and off he'll go.

Levi has awesome brothers and sisters. They have all stepped up to the plate helping me to take care of Levi. They all feel a protectiveness towards Levi. There have been many frustrating times for them as Levi has not been an easy sibling to live with but honestly I can't think of too many times where the kids haven't been able to see beyond the "monster" and deal with the situation with kindness. There have been times where they've saved his life. One day we were at the Arches down in Moab. Kirsten was climbing over some rocks and Levi took off after her and started to climb but on a side that had a cliff. As he was climbing he lost his balance and started to fall backwards. It was one of those moments where Brian and I couldn't get there fast enough. He had taken off without us realizing it and when we noticed seconds later he was out of our reach. Kirsten who was only about five herself reached out and grabbed him yanking him back against the rocks until we could get there. I can't count the many times that situations like this have occurred and the children have reacted like super human adults yanking Levi back to safety. Levi has an army of angels watching over him in the form of his siblings.

We've had to learn to be creative in dealing with Levi because he does not understand reasoning. Levi, put down that knife it is dangerous..........what does that mean? Levi, do you want to put down the knife or take a time out (okay, I'd probably spank at this point but you get the idea) Levi will hold the knife because he doesn't understand the "choice". He is actually getting better at this but it has taken a long time.

I guess my purpose in this post is for that person out there who is where I've been I understand. No one can understand the exhaustion because it can't be explained how cued into these children you have to be. You are never resting. Your ears are always following them where ever they are. If you can't follow them with your eyes because you may have your back turned cooking or something your ears are still literally following that child and you continually glance over your shoulder watching because the one time you let your guard down they run up some rocks and lose their balance.

Now, I have to end this on a funny note because it is too somber of a read but there are some fantastically funny times and good experiences that go along with this. Remember my pendulum post? With the bad it swings just as far to the other side.

At dinnertime having seven children six of which are boys it feels like these animals come running, plop themselves down, and start snarfing from the trough. I have been trying to teach them some manners and finally Brian suggested we try working on one thing and then when they've master that then we can move onto another. We were having spaghetti which is a hard meal to eat gracefully I admit but when their faces are inches from their plates and their arms wrapped around their plates as if they are guarding it from each other barely lifting their eyes while mumbling conversation through the tentacles of spaghetti hanging from their is a bit much so I told the kids, "manners kids" (we're working on keeping your left hand in your lap and sitting up straight) and Levi yells out "YA, MANNURS". I busted out laughing because he is yelling at them manners when he has both arms around his plate and spaghetti hanging from his mouth and he spits spaghetti as he is yelling at his siblings to remember their "mannurs". He is a riot!

Thursday, November 29, 2007

Bitter sweet

Having a baby after Levi has been a bit bitter sweet. In some ways it has been like having our first baby all over again. Both Brian and I have delighted in watching normal typical baby behavior which is ridiculous beings as he is number seven. It isn't like we've not done this a time or two and yet we forget! We'll see him playing with toys and go, "oh yea, I forgot, babies do that!" Having a baby that will snuggle with me and look me in the eye and reach out and touch my face!

Every once in awhile I can get Levi to give me a quick hug. When he was really little I couldn't put him down. I've always worn my kids on me in a pack or sling. I really wore him. By the time the others were mobile they didn't want to be held as much. Levi would cry and cry for hours and hours unless I held him. Having other children to take care of there were days when he would have to sit and cry and cry and there was nothing I could do about it. Sometimes I would put him in his crib for a few minutes, walk out onto the front porch and close the door so I couldn't hear him anymore, just sit, and regroup. I can't count the times he'd cry all night so I'd take him out to the truck so that others in the house could sleep. So, I was able to hold him then but in the last few years he doesn't want physical contact so while he is sleeping sometimes I'll sneak in bed with him just so I can hold him for a few minutes.

We knew the day would come when Jadon the baby would start to pass Levi. We didn't know the day would come so fast. We delight in watching our baby learn things and progress and yet it is tinged with an element of sadness as he passes his older brother.

Yesterday I met with the speech therapist over at the school. We were actually talking about my daughter Kirsten but when the meeting was over she asked if she could talk to me about Levi for a moment. Levi goes to her for speech. She told me with tears in her eyes how much she loved Levi. How special he was and then she said she was sorry. She couldn't help him. He wasn't getting it! I assured her not to worry. We knew this. Levi has hit a plateau. Oh I wanted to sit and cry with the therapist but it was one of those put on a brave face moments and reassure her that we knew she was doing the very best that she could. It wasn't her fault. It isn't Levi's fault. It is just the way things are. Levi has seemed to have hit a wall in some areas and I wish I knew why. We can't seem to get him off this plateau and learning again and at the same time we clap and get all excited watching his little brother climb the learning ladder. The other day Jadon pointed to the letter "R" on my shirt and said, "R"! I was so thrilled and yet, it was backed by that sadness, will Levi ever know his letters.

You know what? A thought just occurred to me that I have to reference every once in awhile. Some back ground: When I was in high school and thought things were soooooo important my father would tell me, "Rachel, it is just high school. After you leave high school you will look back and realize how trivial these things really are". I would whine and say, "But daaaaaad, I'm in high school NOOOOOW, these things are important NOW"!

So, here is my thought. Rachel, it is just high school. YES, he is going to learn his letters and so much more! This is temporary. When we get through "high school" and to the other side I'll realize how trivial my worries were/are. I just need to keep reminding myself that this is just "high school". Sure seems like a long time while you're in it though being clumsy, gawky, and having acne. Sure hope in the next life those things go away............. :o) I'm getting tired of tripping over myself.

A Mish-Mash

I am told that I have the greatest kids in the world. This is no secret to me. I've felt this since the first time I layed eyes on my first baby! :o) Every once in awhile they will do things that take those mommy feathers and puff them up with pride.

Yesterday Matthew stayed home from school because of a sore throat. My Matthew is 9 years old. As his siblings were getting ready for school I told them all that they needed to bring down their dirty clothes to the laundry. As Matthew's siblings were throwing on coats and back packs he informed them not to worry about their laundry that he would do it so they wouldn't be late for school and he did! He went and gathered every one's laundry and sorted it all and took their baskets back to their rooms. Not an easy thing when you realize that some of his siblings haven't been bringing down their laundry as often as they should and had monster piles!!

It was a proud mommy moment!

Sunday, November 18, 2007

Levi and AHC

Soooooooooooo, Kristen has suggested I tell what it is exactly that Levi has. Can I be stubborn and say that I don't want to? That I want it all to just go away? Most days I can put up those walls and casually talk about Levi and what he has and that oh ya, by the way.......he could die any day anytime.......and what he goes through is excruciatingly painful.

I don't know why but this weekend the emotions are a bit closer to the surface. I've allowed that fear to creep in again which I know is wrong. Very wrong. I hate not being in charge sometimes. Oh if I could only make it all go away and have some sort of reassurance that Levi is going to live a long and healthy life.............but I can't and for some reason this weekend I am scared to death of the day he has to leave this life. I do this every once in awhile. It passes and I am able to stand up straight and look forward with fierce determination. Or is it denial.........what ever it is I don't have it this weekend. When you have a child like this you go through the grieving process way too many times. You would think once is enough. is over........move on. Then something happens and it triggers it again and you have to go through it AGAIN and AGAIN and AGAIN.

Here's the thing. Thanksgiving is coming.......then Christmas. Levi has a hard time with the holidays. Last Thanksgiving was quite quiet as Levi was down with an attack so we put him on a mattress next to the kitchen and we quietly gave thanks and had dinner. Maybe I am afraid of something happening to him during the holiday season. The holidays would be difficult if I lost him during that time........Okay, moving on..........No sense crying over something that hasn't happened or isn't going to happen. Honestly, where is a bag of chocolate chips when I need them? Oh yea........I ate them already.

My son Levi Rubow is 5 years old. He operates more on a level of 2 and 3 years of age. Levi has been diagnosed with a rare disease called Alternating Hemiplegia of Childhood. There is a website for more information: . This disease is recently found and so that is why the “Childhood” as those who have been diagnosed with this disease are/were children. The oldest known person to have this is in her 30's. Levi is one out of 200 children in the entire world to have this disease and one out of 100 in the United States. It is a difficult disease in that no two cases are exactly the same. There are similarities but that is all. It appears that over time the children degenerate ending up in wheel chairs, not able to write or hold pencils when there were able to before. How long these children's life expectancy is, we do not know. Several have passed away from this disease. There is no cure as of yet.

Levi is also mentally handicapped. Levi suffers from seizures and is on the autistic spectrum. Levi is affected by AHC (as we call them for lack of a better word) “attacks”. The attacks can be triggered by just about anything. Over stimulation, swimming, change in temperature, loud noises, hitting his head, etc. Hitting his head is pretty much a guarantee that he'll go into an attack. When Levi has an attack it runs through a series of phases. The first phase is as the attack comes on Levi begins to go through intense pain and can feel his body start to become paralyzed. He also has multiple seizures so this is a painful and terrifying time for Levi. He will become as an infant on the ground in the fetal position screaming and crying and throwing up. This can last for a half hour or longer. During this time we can usually start to tell which side is going to become paralyzed but not always as sometimes he will switch sides through the attack. As the attack progresses he will then become completely paralyzed on one side of his body. If it is the right side of his body it will be more severe and last longer. If it is the left side then it is less severe and won't last as long. At this point Levi then goes into the what we call the coma stage. He is as if in a coma and remains so for several days up to a week or longer. If it is the right side of his body then he is in this coma stage longer. He will lose his eye sight and the control of his mouth. Because he loses control of his mouth there is the threat of him suffocating or swallowing his tongue. There have been children who have died because of this. Suffocating in the night because of an attack. He can't swallow at this time so dehydration is also a big enemy as we try to keep him hydrated with a tube we place between spaces in his teeth as his jaw is usually clenched and trickle fluids down his throat. Another concern is he is still throwing up usually so making sure the fluids stay down and do not drown him are also a threat. If it is the left side of his body then Levi can see and use his mouth but his mouth is still affected a little bit. Certainly not as bad as if on the right side. When these children have these attacks there is no guarantee that they will either survive or that they will come out of them meaning they will become unparalized and get their motor skills back. The last phase is when Levi starts to recover. This is again very painful as the feeling returns to his body.

Each time Levi has an attack he has to relearn some things. Because his disease is neurological Levi has a difficult time with sensories and autistic behaviors. A lot of time Levi is in a great deal of pain or he may wake up and his body doesn't feel right. He has many meltdowns because he does not understand and doesn't “feel right”. Levi does not understand danger and boundaries. During a 4th of July parade when the crowd got up to leave Levi left with the crowd and we could not find him. He had seen a balloon which he loves and followed it. Thankfully, the story has a happy ending in that a kind woman found him and noticed he seemed to be alone and brought him to a police officer. I happened to be talking to that police officer asking for his help in finding Levi. Anytime we are out Levi has a tendency to wander off. He can't be alone ever not only because of this tendency to wander off but because of his safety and his seizures.

So there you have it. This is what our little angel lives with. You know the cool thing though? He doesn't know any different. He is happy.........and that makes me happy.

Friday, November 16, 2007

The miracle dog Julie

I have been meaning for some time to write about Levi's dog Julie and how she happened into our lives. I went back and found an e-mail I'd sent some time ago that I am going to cut and paste here that tells the story..........

There are those I suppose who think things happen coincidentally. I do not. I believe in a Higher being who is very aware of each of us and in this particular story He is very aware of a little boy named Levi Rubow. I believe that He uses others and step by step prepares the way for things to fall into place. As these things or processes are happening a lot of times we are completely unaware. Sometimes we can look back and see the process, other times we can not. Here is our story:

A long time ago a little boy named Levi Rubow was born. He was a beautiful baby. With his birth came the knowledge to his mother and father that all was not well. Something was seriously wrong with their baby. They had no proof. They just knew. Over time, their fears were confirmed. He had a rare neurological disease that is degenerating and life threatening. As his parents have cared and loved him the thought was brought to his mothers mind, a service dog. His mother began researching and looking into them but was discouraged by what she found. She quit researching but the thought never completely left her mind. Over the next few years the thought would repeatedly come to the front of the mothers mind again and she would again research and look into getting her son a dog. It was during this time that she became aware of 4 Paws. She liked what she read and knew that if and when the day came she would get a dog for her son through this organization but at this time felt that the answer was still "not right now". A year ago, the mother was reading to her children during dinner. The story she was reading was about a seeing eye dog. After she finished the book, her son Levi said, "Levi needs a dog". He repeated this over and over. This was astonishing to Levi's parents because Levi had never asked for anything for himself. He did not know how. At that time his speech was limited and he was not able to communicate. Levi continued for days repeating this phrase over and over. His parents thought that he would forget but he never did. His mother went back to the 4 Paws site on the Internet and felt that it was time. She began the process of getting Levi a dog. Levi's family prayed and fasted many times that Levi would be able to get his dog. Levi's mother felt that the dog would be provided and that she would not need to do anything. It would be taken care of for her. She did not know how this was going to happen. $12,000 dollars were needed for this dog! During all of this an interesting thing happened. The siblings of Levi were outside playing one morning. They came running into the house to inform their mother that there was a strange dog in the yard. The children had been taught that when a strange dog comes into the yard they are to come into the house immediately and inform their mother as strange dogs can be dangerous. The mother usually chases the dog away from her yard and doesn't' have the kindest feelings towards stray dogs. Without knowing why, this time was different. The mother told the children to leave the dog alone. She did not see the dog, she continued about her daily duties. That evening the family left for several hours. When they returned, the dog was curled up on their front porch. The mother not knowing why brought the dog in, fed, and cared for the dog. The family tried to find the dogs home but could not find its family. They then tried to find a home for the dog but it did not work out. Meanwhile, the dog became attached to Levi. The dog felt a certain protectiveness towards Levi and would not let Levi out of her site. She slept with Levi. She played with Levi. She rested next to Levi. Levi named this dog "Julie".

Levi's siblings in the past have been home schooled. As this last school year came to a close it was time to decide where Levi would go to Kinder garden. His mother was worried because she knew that when Levi went to school, he would have his service dog with him. She worried that the school would give them problems. When his mother met with the principal of the school he would be going to she was received with excitement at the prospect of having a service dog in the school and what it would teach the other students. The mother felt that that "Higher" hand was very much involved and that things were taken care of for her. She also felt that the rest of her children should go back to public school in the fall. She did not know why. She still wonders but is starting to have an idea that she might know why now. She enrolled her children in public school.

The family continued to try and fund raise money for Levi's service dog from 4 Paws but it seemed everything they tried ended in failure. The mother was feeling despair and wondering why things were not falling into place as she felt they were supposed to. Then, Levi had one of his many attacks. The attack was a difficult one. Levi was in bed for several days. During this time, the dog Julie would not leave his side excepting to eat and to defecate. As Levi's parents watched this they marveled at the bond that was between this dog and their son.

It has been a year since this e-mail was sent. Julie still remains faithfully by Levi's side and has made a big impact on his life. We have noticed that he has had considerably less melt downs and attacks since Julie arrived in Levi's life. We have been taking her to obedience classes which she does amazing in. What can we say? She is an amazing dog! And what about the dog from 4 Paws that we were fundraising for? I've thought about that a lot. I think we'll just continue to slowly add money to Levi's account there at 4 Paws as we can and about the time we'll have that dog paid for Julie will be ready for retirement.

Saturday, November 10, 2007

Levi's first lost tooth

And once again.......if I knew the future I could plan for it. For awhile now I've known that Levi would start to get loose teeth and I have been worried. I've wondered how he would handle it not knowing and understanding what was going on. I've had images of Levi losing his tooth and having a melt down because we couldn't put it back and "fix it". I've worried that when he would see the blood it would upset him.......Never in all of my worries did what really happen occur!

Two days ago while putting Levi to bed I was wiggling his tooth and he was giggling. Next thing I know the thing literally pops out. I showed him the tooth and he felt with his tongue and continued to giggle! That was the extent of it! Where the trauma came from was his siblings on the Tooth Fairy of all things! Were we going to call the tooth fairy because he doesn't understand and doesn't know who the tooth fairy is........It never occurred to me to even think about the blasted tooth fairy which by the way........whoever came up with this tradition I would like to rearrange THEIR teeth. The very idea of waiting until your child is asleep.......sneaking into their bedroom and trying to find a little itty bitty tooth in their vast bad that started under their pillow but since they've fall asleep has since moved elsewhere......trying to keep the money quiet as you slide your hand under THEIR HEAD..........., Levi lost his first tooth and it ended up being more traumatic for his siblings than for him!

The pendulum affect

I have had many people ask, "How do you do it?" I think sometimes I would like to say back, "how do you not?" I am asked, "Do you become numb? " The answer is, "no". Sometimes I think I wish I could become numb.........but then if I were numb I would be numb to all feeling and I would miss out on the good. The pendulum affect as I call it. As far as the pendulum swings in one direction it swings just as far in the other. Yes, the bad can be really bad. It can be so hard and yet, the good is a good that nothing can be compared to.

I realize I am not making any sense here. As I have thought about trying to write this down it flowed much better in my mind than it is here.

It is bittersweet really but then isn't life? It has been a painful ride. Each time I go through the grieving process AGAIN I think, "when am I going to get a grip and stop grieving" and then we go through a good spell and I think all is behind me and then something happens and I go through the grieving process again.

I remember one day looking at my fridge and on it were Levi's hand prints he had done at his special needs pre-school and I felt so sad inside and felt like crying. I walked over to the fridge and touched the hand prints to my own hands and felt as if my baby had died. I called my sister and told her how ridiculous I was feeling and she told me absolutely not! In a sense what we thought when we'd had Levi had died. Levi isn't the perfect normal little child running around that we'd dreamed and thought of for nine months. Do you know how hard it is to watch your two year old pass up his older brother? We knew this day would come but I think secretly I hoped it wouldn't. That Levi would keep progressing at his own little pace and somehow stay ahead. I knew he wasn't on level with children his age but having his baby brother passing has been harder than I thought. Levi seems to have plateaued a bit. I've joked to Brian my husband many times that I wish I knew the future so I could plan for it............I wish I knew if Levi was going to get past this plateau.........

I've lost track of the times that I have knelt next to Levi's crib and bed pleading with Heavenly Father to spare Levi's life and then having to dig down and say, "thy will be done--but if it is thy will that Levi should leave this life You are going to need to help me get through because I do not know how I am going to." Levi is such a part of me. The relationship I have with him is different. I do not know how to explain it excepting that I guess you could say we're conjoined.......My senses are tuned into him. I've had to. I've had to watch him so closely.....listen for him.........try to feel how he is doing because his outward appearance doesn't always let me know. When you spend so many years being that tuned and keyed into someone you become meshed somehow and I do think if he ever does leave this life......because he is such a part of would I go on? And yet........I know I would. I don't know how.......but I would because I know I'll never be given more than I can handle in this life so if my Heavenly Father knows that this must be.........then it must be.

So, the pendulum sways. I used to read about people saying their hearts swelled inside them and wonder what in the world they meant. Now I think I kind of know. You can't help but look at Levi and not have your heart swell in you. Angels do walk this earth. I know they do because one of them is named Levi and I would never trade the blessings we've had of having him in our eternal family.

Wednesday, November 7, 2007

Another Levi miracle

Last Friday while Brian and I were out on a date we were talking about Levi's latest miracle. Brian made the suggestion that I should be writing these things down so that we will remember. It is hard to be grateful if you do not remember.

I think too often I fall into the pitfall of wishing for the "big miracle" with Levi. A cure. I tend to forget how many miracles we've had with Levi along the way.

If I were to start at the beginning it would be overwhelming and take me forever I think so I'm going to work my way backwards as I remember things as Levi's story really is a beautiful story.

Because of Levi I have learned to rely heavily on our Father in heaven for his guidance in taking care of Levi. I know that Levi is my son but he is also Heavenly Father's son and He knows Levi far better than I and how to take care of Levi. He has made impressions on my mind and I've not always known why but in some cases it has eventually been made known to me and I have been grateful and have sat in awe thinking of the beauty of it all.

Here is one such instance. Ever since Levi was born I have felt strongly that undisturbed sleep and rest are very important for Levi. He still needs a good 12 hours of sleep at night. I have felt strongly that he needs to get to bed early and 7:00 P.M. seems to work good for him. As best we can we have tried to stick to this firmly. It has been difficult at times because it means Levi misses out on a lot of things. It also means if our family is doing an activity (which a lot start at 7:00 P.M.) then either Brian or I need to stay home with Levi so our family is split up a bit.

Even though it has been difficult I have felt inside of me that this is very important. I can't explain the feelings but I have known this is something that we must do. There have been a few things that have been quite strong inside of me that I have known that I've needed to do for Levi. It is hard to describe excepting if anyone were to try to get me to stop or talk me out of it I would feel the need to rise up and fight for these feelings. That is how strong and powerful they are.

Anyway, Levi's neurologists have been prescribing different medications for Levi and we have turned them down. We've not felt good about medicating Levi at this time. At one time there was a drug that was being pushed that was supposedly helping the children like Levi. We did not feel good about it.

A few weeks ago Levi had an appointment at Primary Children's hospital. As I was meeting with his neurologist the topic of rest came up and I told them how firm we are in Levi's rest and how we stick to a very strict sleep schedule for him. The neurologist that is on the research team for what Levi has then admitted that they are going in another direction. The medication that they thought was helping these children hasn't helped very many and they are now turning in the direction of sleep and rest! They are finding that when these children have attacks it is through sleep and rest that they are able to heal and some of the older children who can start to feel an attack coming on....if they go and sleep in a quiet dark room they are able to ward off the attack.

As I left the hospital I marveled and my heart was a prayer of thanks. I was surrounded by brilliant minds who are trying SO hard to find a cure. They have gone to years of school and I am grateful to them for all that they do but I am also grateful that Levi's "doctor" is our Father in Heaven. Once again, he has impressed on my mind how to take care of Levi.

This has happened many times. I am so grateful for the gift of the Holy Ghost. I am grateful for the comfort that He brings. I do not know how people go through life when they have to rely on the natural man............there have been times when we have been in scary situations with Levi and I've not known what to do and have felt the feelings of a panicky parent trying to make a decision based on what "I" know. I am grateful that at these times I have been able to retreat to a quiet spot and ask my Heavenly Father what He would have me do in taking care of Levi our son and in the quiet the answers have come and along with the answers calm and peace.

Tuesday, November 6, 2007

Book review.........more or less

Bummer........they do not have the font I want on this here blog thingy........oh well.

So, this is kind of scary putting your thoughts out there for anyone to read. Are you sure I'm not going to be murdered in my sleep Kristen for my views on things???? :o)

There are a few books that are keepers. Meaning some books you read them once and was a fun read or interesting but you have no desire to read them again as they did not fulfill you in some way or another. They may have been entertaining or you learned what it is you needed from that book and so it just takes up space on the bookshelf collecting dust. Then you or I in this case have books that are timeless and when the mood hits I read them over and over and over again.

"The Education of Little Tree" by Forrest Carter is one such book. A book that will have you laughing one minute and crying the next. The relationships in this book are heartwarming and real and the life's lessons learned are wonderful.

I have been in the mood to read this book again so picked it up a few days ago and have been taking my time enjoying every moment when I can sit and digest its every word. At one point in the story Little Tree's grandmother gives him some words of wisdom.

They are:

Oh hey wait. Am I going to get in trouble for copyrighting stuff? See, this bloggy stuff is tricky! Okay, I'm giving full credit to the author here..........taint my words........tis his..........

"Granma said everybody has two minds. One of the minds has to do with the necessaries for body living. You had to use it to figure how to get shelter and eating and such like for the body. She said you had to use it to mate and have young'uns and such. She said we had to have that mind so as we could carry on. But she said we had another mind that had nothing atall to do with such. She said it was the spirit mind.

Granma said if you used the body living mind to think greedy or mean; if you was always cuttin' at folks with it and figuring how to material profit off'n them....then you would shrink up your spirit mind to a size no bigger'n a hickor'nut.

Granma said that when your body died, the body living mind died with it, and if that's the way you had thought all your life there you was, stuck with a hickor'nut spirit, as the spirit mind was all that lived when everything else died. Then Granma said, when you was born back as you was bound to be then, there you was, born with a hickor'nut spirit mind that had practical no understanding of anything.

Then it might shrink up to the size of a pea and could disappear, if the body living mind took over total. In such case, you lost your spirit complete.

That's how you become dead people. Granma said you could easy spot dead people. She said dead people when they looked at a woman saw nothing but dirty; when they looked at other people they saw nothing but lumber and profit; never beauty. Granma said they was dead people walking around.

Granma said that the spirit mind was like any other muscle. If you used it it got bigger and stronger. She said the only way it could get that way was using it to understand, but you couldn't open the door to it until you quit being greedy and such with your body mind. Then understanding commenced to take up, and the more you tried to understand, the bigger it got.

Natural, she said, understanding and love was the same thing; except folks went at it back'ards too many times, trying to pretend they loved things when they didn't understand them. Which can't be done.

I see right out that I was going to commence trying to understand practical everybody, for I sure didn't want to come up with a hickor'nut spirit."


What's this? A blog?

Okay Kristen, I've started a blog. What in tarnation is a blog? It sounds like something that I regurgitated which I guess in a sense I am regurgitating our "happenin's".

I've taken your advice and have started this thing of which I know nothing about. I've no idea where it even goes or where it appears or how to reach it again after I exit. :o)

So, upon your suggestion I am posting Levi's latest which are "Words of Wisdom" Small and simple truths. Perhaps I should give some background first just in case someone besides you should actually read this post--how in the heck is that possible if I don't even know where this post is or where it goes to in the vast cyberspace world? I'm trusting you darlin'.

Our Levi. I'll keep it simple for now. Reason being I have a two year old resting his head on my arm that is trying to type while I have the phone perched on my shoulder while talking to my sweetheart for our lunchtime chat.

Levi is five years old. Almost six. He is number 6 of seven children. Six girl. Don't worry about the girl. She holds her own just fine. It is her daddy who she has wrapped tightly around his little finger that you need worry about.

Back to Levi. He is almost six but is mentally about 2-3. Yes, I have two year old twins!!! (As we call them...) AAARRRGGGhh. This morning while changing Levi's diaper he was telling me, "Mommy, I know what ********* means" and I would say, "what" and he would say something that had absolutely nothing to do with what he'd originally said. Something like this. "Mommy, I know what paper means..........." I would reply, "What"? Levi, "A towel........" After doing this a few times he said, "Mommy, I know what tonement means........." I said, "What"? Levi said, "a blanket......". Now, you have to understand that Levi picks up words all of the time out of the blue. Conversations he hears and he'll take a word out of it that......... I don't know........sounds interesting to him such as..........atonement!

I sat there this morning and thought to know.........he has (not knowing it but maybe I needed to hear it) hit it right on the head. It is quite simple. The Atonement is a blanket. It is a beautiful quilt that the Savior made for us that covers EVERYTHING, it keeps us protected and warm, it comforts us, and it makes us feel better. It really isn't anymore complicated than that.

So, there is my blog for the day. Words of wisdom by Levi. Now I'll hit this publish post button and who knows what the heck happens after this. Where it goes.......I've no idea.........just hope my computer doesn't blow up.