" A child has been born to us; God has given a son to us. He will be responsible for leading his people. His name will be Wonderful Counselor, Powerful God, Father who Lives Forever, Prince of Peace." Isaiah 9:6
Every Christmas, I try to take the time to be still and realize the enormity of the gift given to the world that first Christmas night. As I thought about Christmas and its aftershocks, aftershocks that are still reverberating in the year 2010, this verse came to mind. I know that Christmas is sooo much more than what it means to me in my limited time in space and my limited experience. But, in my limited experience, Christmas has rocked the world I live in. When I think of the words, "has been born to us" and "God has given" I can't dismiss the feeling of gratitude and incredulity. I always find a gift to be meaningful, but a gift of this magnitude, it is beyond me.
As I look through the ways that I have been divinely startled this year, I see a Wonderful Counsellor, a Powerful God, a Father Who Lives Forever, and mostly a Prince of Peace.
In fact, I do not know how I would have been able to make this journey without these attributes. There have been times, many times, when I have been up against a wall. It seems that a certain treatment has plateaued, or I don't know what to do with a certain behavior. I can tell you of several times that my heart has needed a counselor and how it has found Him. Thinking of just this year; I needed a new IBI provider. I asked my Counselor to guide me and three different people gave me the name of S.T.E.P.S. who couldn't have been a better fit for Scarlet. When looking for the next way to go in the diet area, God led me to the Specific carbohydrate diet through a friend and through the DAN doctor. This diet has led to several positive changes. When wondering if God has forsaken me, he reminds me that he will never leave me and nothing can separate me from his love. When wondering what next step to take with treatment, I was told by a fellow parent of a product called PCArx (A Chlatharation agent or chelating agent) When I began Scarlet on this product my DAN doctor did not know what to do with the detoxing showing up in her bloodstream. We have seen many positive changes with this product, even my DAN doctor is excited about it.
When I think about the Powerful God, I see his fingerprints everywhere. To see him bring beauty from the ashes of this disease speaks to the miraculous power he has to transform death to life. Paul and I wanted to get Scarlet a birthday present that would fit a $200 budget. Everyone had pooled their money, because Scarlet has not taken to lots of small gifts in the past..she finds it stressful. We wanted to get her a swing set, because we knew she would enjoy it. Long story short, God provided a brand new, from Rona, regularly $900, for $180 before taxes!!! I ask God every night to give Scarlet her words and to take this disease away from her. I know that he is the Powerful God, I have experienced it. It is perhaps the biggest tension of faith in this situation. I know that he can, I don't know if he will. No matter what, I have seen that his ways are right and good and beautiful.
The Father Who Lives Forever, is so significant to me, because my own daddy passed away almost ten years ago. There is nothing like running to your daddy and just letting him be strong for you, just getting lost in those big daddy arms and knowing that he is the strongest dad around and he is not going to let anything get to you. There have been some nights when I have just wanted my daddy! No one understood me like he did. On those nights, I hear another voice speaking to me. He reminds me that he loves me, created me, longs to hold me, sings songs over me. It is in the most discouraging, heart heavy days that I can still find big daddy arms that hold me. Arms that glisten with my tears and hold me tighter until my sobs have subsided. Then he takes me and looks me full in the face and tells me how much he loves me. My Father Who Lives Forever, never goes away and he watches out for me. I am his child. It is so profound, God sent his son to us to show us that he is our Father, because he knew that this would be a very important message to us... to me, 2010 years later in some obscure northern town.
Lastly, but certainly not finally as there are so many other names for God that have also been significant on this journey (Saviour, Lord, My Provider, The God who Sees, The All-sufficient One...) Lastly, the Prince of Peace has kept me wrapped up tightly in his safe house. I remember this most significantly right before Scarlet started school. I was beside myself with worry. Who was she going to get as an EA? Was she going to be able to function in the classroom? How much red tape was I going to have to wade through in order to get her the help that she needs? I was in such turmoil that I couldn't sleep. I couldn't let my baby be thrown to the wolves. Who knew what she would hear about her disabilities, who would tease her, who would underestimate her, who would tend to her safety. It was in these worries that the Prince of Peace raised his hand over my storm and said "peace, be still" He reminded me that I should "Cast all my cares on him because he cares for me" He reminded me to be "anxious in nothing, but by prayer and petition make my requests known to him". He reminded me that he has always taken care of me and Scarlet. I can not describe to you the peace that settled over my heart... it was supernatural and it hasn't left. Every time, I hear those nagging voices, I hear his voice saying "peace" and all is still again. And as if to confirm to me that all would be OK, he sent a lady from our church who knew about Scarlet to be her first EA.
"Then a very large group of angels from heaven joined the first angel, praising God and saying; 'Give glory to God in heaven and on earth let there be peace among the people who please God.'" Luke 2:13-14
I echo those words and say Thank you God for such a gift! Wonder Counsellor, Powerful God, The Father who Lives Forever, Prince of Peace.
Sunday, December 27, 2009
Wednesday, December 23, 2009
EEG Adventures in node placement
Scarlet was scheduled for her first EEG this Monday to rule out the possibility of siezures. She was having these strange "Spells" as my Mamaw would say. She would stare blankly, salivate excessively and look like she was choking. They would last for about 30 seconds before she would come back around. We were naturally concerned. She has displayed similar behaviour about a year ago for a brief period. This time the "spells" were also of a brief duration... about a week. The EEG results confirmed that she was not having any mini siezures. That was good news!! As to the mystery of the "spells", well for now we are still in the dark. I am just glad she has stopped having them.
I am always amazed by Scarlet's ability to endure medical procedures. She was such a little trooper. At first she quite liked it as the technician measured out her head and marked the appropriate places in red pencil. It was kind of like going the beauty parlor, a nice head message, a chatty lady, but her affiinity to this new kind of head message quickly abated when the glue and tape came out. Like so many things, it started out with wonderfully happy music in the background, a t.v. playing tree house non-stop, then the record warped and faces turned green.
These annoying little nodes had to be attached for a long period of time, 20 minutes to be exact. Mom and that pesky technician kept insisting that she could in no way touch or play with the nodes or attached wires. To make matters worse, there were nodes that had to be attached to the side of her face with glue and tape, those were exceptionaly irksome. It was at the attachment of the side-of-the-face nodes that Scarlet decided that she had indeed had enough. She wanted out and tree-house was no longer so interesting.
Note to anyone awaiting an EEG....if you complain enough, you get to have two t.v.s on. One playing Dora and the other playing some annoying little blue creatures. After some effort at removing the nodes, several attempts at which she proved successful, Scarlet succomed to the octopus of a mommy that held her arms tightly and convinced her that sitting still was a great option after all. She eventually agreed and gave us no more grief for the remainder of the 20 minutes.... I think someone must have been praying!
We will get the full results at our next doctors visit in the new year, but for now, I am glad that the glue washed out and that there are no more forseeable EEG's in our future (not to mention an absence of little blue creatures).
I am always amazed by Scarlet's ability to endure medical procedures. She was such a little trooper. At first she quite liked it as the technician measured out her head and marked the appropriate places in red pencil. It was kind of like going the beauty parlor, a nice head message, a chatty lady, but her affiinity to this new kind of head message quickly abated when the glue and tape came out. Like so many things, it started out with wonderfully happy music in the background, a t.v. playing tree house non-stop, then the record warped and faces turned green.
These annoying little nodes had to be attached for a long period of time, 20 minutes to be exact. Mom and that pesky technician kept insisting that she could in no way touch or play with the nodes or attached wires. To make matters worse, there were nodes that had to be attached to the side of her face with glue and tape, those were exceptionaly irksome. It was at the attachment of the side-of-the-face nodes that Scarlet decided that she had indeed had enough. She wanted out and tree-house was no longer so interesting.
Note to anyone awaiting an EEG....if you complain enough, you get to have two t.v.s on. One playing Dora and the other playing some annoying little blue creatures. After some effort at removing the nodes, several attempts at which she proved successful, Scarlet succomed to the octopus of a mommy that held her arms tightly and convinced her that sitting still was a great option after all. She eventually agreed and gave us no more grief for the remainder of the 20 minutes.... I think someone must have been praying!
We will get the full results at our next doctors visit in the new year, but for now, I am glad that the glue washed out and that there are no more forseeable EEG's in our future (not to mention an absence of little blue creatures).
Sunday, December 20, 2009
We are family
Most of us can identify with the bittersweet priveledge it is to grow up with a sibling. There is hardly a memory of my childhood that isn't colored with the blond hair and sly wit of my brother, Matthew. For the most part we were best of friends. He would oblidge me and let me practice my cheerleading stunts with him as long as I would play a round of hoops afterwards. We would spend hours working out routines with hangers just to put on a show. He was just my buddy. On occasion, he would display one of those pesky little brother sides and annoy me to the point of breaking. Often he would bring over friends that were annoying, friends that read my diary and talked in alien voices. Yet for all the fights we had in the back seat of the car on our way down to Alabama, there were ten other good memories.
I have often wondered how my other children will remember Scarlet. Brynn in particular. He is two years older than Scarlet, so he has been part of this journey with us. I know it is very unmotherly of me, but I often forget that autism has taken something away from him too. When Scarlet began to display symptoms of autism, he would very often take the brunt of a tantrum. He has been bitten, smacked, kicked, head-butted and ignored by his sister. It was hard for a then four year old to understand what autism is and how it has affected his sister. It is hard, when you are four to understand why your sister doesn't get the same kind of punishment for her actions. It is really hard to understand how her hitting is really her way of displaying affection. It is hard to have your mother's face always looking in her direction. How many of us grew up thinking that our parents really loved the other one better...everyone thinks that at one point or the other.
I have watched Brynn work through different levels of grief. He was at one point so angry with his sister that he never wanted to talk to her or have her around. Little by little as her world has begun opening up to us again, I have seen him bravely step back into the ring of sibling relationship. I say bravely, because he is risking bodily harm to engage her. He still often gets smacked and bitten. He cries, then he gets back up and walks back into the ring. It is something remarkable for me to watch. I can't relate. But I recognize in him, the same thing that motivates me...connection. When Brynn connects with his sister that was lost to him, it is a little victory. When he sees Scarlet shining out of her eyes again, and makes her laugh, or squeal with delight, he has just won the joust with austism. He is shaping up to be a brilliant jouster. When I watch this joust my eyes swell with tears for the brave little knight who doesn't yet fit his armor.
I have watched Skye as she hasn't known anything different from her sister. She still walks by Scarlet with her hands over her head so that she doesn't get knocked in the noggin'. I have walked in on her sitting in Scarlet's lap, saying, "Talk to me Scarlet, why don't you talk to me?" I have watched her take on the role of nurtrurer as she does little piggies with Scarlet's toes and frequently asks her if she is alright. She is often heard saying, "it's ok sweetheart". All is not good however, it seems she has taken to pushing Scarlet away in order not to get a "love tap". Whats a sibling without a little rivalry.
My babysitter told me that she hear Brynn defending his little sister from a curious friend from school. When the friend said, "Isn't it annoying that she can't talk?" He very passionately answered that he wasn't annoyed and they he loves her just the way she is. This is another way that I have been startled by autism. I am so thankful to God for the way he has helped my babes deal with the disfunction of autism and I pray for every day that God would be gracious to them and give them strength.
I have often wondered how my other children will remember Scarlet. Brynn in particular. He is two years older than Scarlet, so he has been part of this journey with us. I know it is very unmotherly of me, but I often forget that autism has taken something away from him too. When Scarlet began to display symptoms of autism, he would very often take the brunt of a tantrum. He has been bitten, smacked, kicked, head-butted and ignored by his sister. It was hard for a then four year old to understand what autism is and how it has affected his sister. It is hard, when you are four to understand why your sister doesn't get the same kind of punishment for her actions. It is really hard to understand how her hitting is really her way of displaying affection. It is hard to have your mother's face always looking in her direction. How many of us grew up thinking that our parents really loved the other one better...everyone thinks that at one point or the other.
I have watched Brynn work through different levels of grief. He was at one point so angry with his sister that he never wanted to talk to her or have her around. Little by little as her world has begun opening up to us again, I have seen him bravely step back into the ring of sibling relationship. I say bravely, because he is risking bodily harm to engage her. He still often gets smacked and bitten. He cries, then he gets back up and walks back into the ring. It is something remarkable for me to watch. I can't relate. But I recognize in him, the same thing that motivates me...connection. When Brynn connects with his sister that was lost to him, it is a little victory. When he sees Scarlet shining out of her eyes again, and makes her laugh, or squeal with delight, he has just won the joust with austism. He is shaping up to be a brilliant jouster. When I watch this joust my eyes swell with tears for the brave little knight who doesn't yet fit his armor.
I have watched Skye as she hasn't known anything different from her sister. She still walks by Scarlet with her hands over her head so that she doesn't get knocked in the noggin'. I have walked in on her sitting in Scarlet's lap, saying, "Talk to me Scarlet, why don't you talk to me?" I have watched her take on the role of nurtrurer as she does little piggies with Scarlet's toes and frequently asks her if she is alright. She is often heard saying, "it's ok sweetheart". All is not good however, it seems she has taken to pushing Scarlet away in order not to get a "love tap". Whats a sibling without a little rivalry.
My babysitter told me that she hear Brynn defending his little sister from a curious friend from school. When the friend said, "Isn't it annoying that she can't talk?" He very passionately answered that he wasn't annoyed and they he loves her just the way she is. This is another way that I have been startled by autism. I am so thankful to God for the way he has helped my babes deal with the disfunction of autism and I pray for every day that God would be gracious to them and give them strength.
Tuesday, December 8, 2009
An Addendum
Just a few updates on the Scarlet front, since my last post this evening was more venting than informing. Scarlet had what appeared to be seizures on and during our trip to Nashville. She has had these "spells" once or twice before, but they had stopped happening so I never looked into them. I took her to see Dr. Steffans and she has an EEG on December 21. I would appreciate prayers for that procedure.
Scarlet has started with her voice output device. She keeps asking for us to brush her hair. I don't know if she really wants that, or if it is just a convenient button.
I think Brynn is more excited about the device than anyone. He is constantly getting it out and asking her what she wants. Tonight at dinner she was quite upset and he ran into her room and got her Go Talk and said, now she can tell us what she wants. A wonderfully lady whose daughter is one of S.T.E.P.S. clients gave us the device to use as her daughter has outgrown it....such a beautiful gesture.
Scarlet very much enjoyed our recent trip to Nashville. She was so excited to go and see her Nana. It was neat to see her bond with her cousing Allyssa and Uncle Matt and Aunt Tara. I have a couple of great pics of her snuggled up with her cousin Allyssa watching princess dvds. She always love snuggles with Nana too.
Also, Paul and I have an interview about Scarlet on Huntley Street. We are filming live at 9:00 this Thursday (December 10), but it is also on CTV, and Global at different time slots througout the day. You can also view it at crossroads.ca
Scarlet has started with her voice output device. She keeps asking for us to brush her hair. I don't know if she really wants that, or if it is just a convenient button.
I think Brynn is more excited about the device than anyone. He is constantly getting it out and asking her what she wants. Tonight at dinner she was quite upset and he ran into her room and got her Go Talk and said, now she can tell us what she wants. A wonderfully lady whose daughter is one of S.T.E.P.S. clients gave us the device to use as her daughter has outgrown it....such a beautiful gesture.
Scarlet very much enjoyed our recent trip to Nashville. She was so excited to go and see her Nana. It was neat to see her bond with her cousing Allyssa and Uncle Matt and Aunt Tara. I have a couple of great pics of her snuggled up with her cousin Allyssa watching princess dvds. She always love snuggles with Nana too.
Also, Paul and I have an interview about Scarlet on Huntley Street. We are filming live at 9:00 this Thursday (December 10), but it is also on CTV, and Global at different time slots througout the day. You can also view it at crossroads.ca
Beauty is beastly
I have, of late, had a love hate relationship with the Disney princesses. What! the Disney princesses???? How can anyone hate them? I was eagerly awaiting the day I could dress up a co-operative child, after having a boy first... He was not into the girly things at all...its a good thing. When I had Scarlet, I went looking for all kinds of princess/fairy dress up gear. I couldn't wait for girl dress-up. Spider man and Batman were admittedly fun, but now, Now I was going to have a Cinderella around. Scarlet loves the princesses, Ariel being her decided favorite, but its just that as I am getting to know the princesses better, I am not so sure that I like them.
It could be that Snow White rather joyously proclaimed "Dreams can come true!" right as I was searching Scarlet's room for any more visible signs of feces....it was one of those, found Scarlet with number two all over her hands and face and room kind of moments....I can't say I appreciated Snow White's enthusiasm or conviction.
At other times, I have snuggled in with Scarlet to read her a princess book and thought, as I read "The End", that it would be hard for any normal girl to live up to those expectations, let alone a girl with autism. My little princess doesn't have any kind words, she can't clean up any one's messes, her dancing skills are not impressive, she doesn't know how to cook, and she will probably never have a handsome prince to sweep her off her feet and marry her. She does like to dress up though .... one for ten.
The princess sing-a-long songs are Scarlet's favorite thing to watch. I find myself humming Colors of the Wind and Kiss the Girl more frequently than is proper for a grown woman. It is guaranteed that at our house there will be 30 minutes a day devoted to those glowing, singing princesses. Scarlet squeals with delight when they sing to her...I think they are her friends. I don't want to take them away from her, but sometimes I wonder how "All your dreams will come true" and just wait for the handsome prince, he'll make it better is helping the situation at hand.
I have been thinking allot about living in a place that is unfulfillment. What I mean is living in a place that is undesirable. A place that there seems no way out of. A place that will likely not improve. A place like autism. There are princesses in this place, but they dress in only comfortable clothing and those dreadful, comfortable, but downright ugly shoes. Their beauty is unconventional, but it shines from their eyes if you know how to look.
It is a paradigm that most people in the West are not forced into. Here in the west it is quite possible for people to find a way out of grinding poverty, improve their circumstances, find cures for what ails them. It is likely that if you are having a low point in your life, that things will eventualy improve... but what if they can't improve? What if they never do? I could be wrong, but I think the Disney princesses wouldn't be able to handle this reality.
Before you think me a spoil sport, pragmatic and austere, you should know that I would rather be caught in a Science fiction novel, be swept away by Shakespeare, watch ballet, and watch a good romantic comedy than most anything. Perhaps my overactive imagination needed something more firm to contemplate. At any rate, I see no desireable way to live in a place called autism without Jesus. It is too grinding to wake up to its reality without knowing that someday, it will not exist. Because Jesus was born with humanity wrapped around him, because he lived sinlessly, because he took my punishment so that I could enter his heaven someday, because not even death could hold him, I know that in The End of my book, there will be a smile on my face.
So, I will pray that Scarlet knows her heart should be the most beautiful thing about her. I will try to teach her that contentment in the middle of something unchangeable is more valuable than a diamond tiara. I will push her to keep trying to reach new goals because giving up is worse than an evil stepmother. I will teach her to dream about a place where no sickness or tears exist. And I will alway leave room for a miracle ...because our God specializes in them.
Thus ends my diatribe on the princesses! Maybe tomorrow, I will like them a little more.
It could be that Snow White rather joyously proclaimed "Dreams can come true!" right as I was searching Scarlet's room for any more visible signs of feces....it was one of those, found Scarlet with number two all over her hands and face and room kind of moments....I can't say I appreciated Snow White's enthusiasm or conviction.
At other times, I have snuggled in with Scarlet to read her a princess book and thought, as I read "The End", that it would be hard for any normal girl to live up to those expectations, let alone a girl with autism. My little princess doesn't have any kind words, she can't clean up any one's messes, her dancing skills are not impressive, she doesn't know how to cook, and she will probably never have a handsome prince to sweep her off her feet and marry her. She does like to dress up though .... one for ten.
The princess sing-a-long songs are Scarlet's favorite thing to watch. I find myself humming Colors of the Wind and Kiss the Girl more frequently than is proper for a grown woman. It is guaranteed that at our house there will be 30 minutes a day devoted to those glowing, singing princesses. Scarlet squeals with delight when they sing to her...I think they are her friends. I don't want to take them away from her, but sometimes I wonder how "All your dreams will come true" and just wait for the handsome prince, he'll make it better is helping the situation at hand.
I have been thinking allot about living in a place that is unfulfillment. What I mean is living in a place that is undesirable. A place that there seems no way out of. A place that will likely not improve. A place like autism. There are princesses in this place, but they dress in only comfortable clothing and those dreadful, comfortable, but downright ugly shoes. Their beauty is unconventional, but it shines from their eyes if you know how to look.
It is a paradigm that most people in the West are not forced into. Here in the west it is quite possible for people to find a way out of grinding poverty, improve their circumstances, find cures for what ails them. It is likely that if you are having a low point in your life, that things will eventualy improve... but what if they can't improve? What if they never do? I could be wrong, but I think the Disney princesses wouldn't be able to handle this reality.
Before you think me a spoil sport, pragmatic and austere, you should know that I would rather be caught in a Science fiction novel, be swept away by Shakespeare, watch ballet, and watch a good romantic comedy than most anything. Perhaps my overactive imagination needed something more firm to contemplate. At any rate, I see no desireable way to live in a place called autism without Jesus. It is too grinding to wake up to its reality without knowing that someday, it will not exist. Because Jesus was born with humanity wrapped around him, because he lived sinlessly, because he took my punishment so that I could enter his heaven someday, because not even death could hold him, I know that in The End of my book, there will be a smile on my face.
So, I will pray that Scarlet knows her heart should be the most beautiful thing about her. I will try to teach her that contentment in the middle of something unchangeable is more valuable than a diamond tiara. I will push her to keep trying to reach new goals because giving up is worse than an evil stepmother. I will teach her to dream about a place where no sickness or tears exist. And I will alway leave room for a miracle ...because our God specializes in them.
Thus ends my diatribe on the princesses! Maybe tomorrow, I will like them a little more.
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