There are days when I feel as though life just knocks the wind from our sails. It's always surprising, sudden, catastrophic even. It shouldn't be though. I mean if life were all sunshine and lollipops well then we wouldn't have reason to grow, learn, and persevere through hard stuff to become better people. Yesterday, the sails were full. We spent the morning at Gillette Children's Hospital meeting Ellie's new team. I drove us home thinking how blessed we've been to always find our way to the right place at the right time. I feel (present tense intentional) confident that God is on our side, that as he has promised, he's gone ahead of us prepared the way and IS in control. I feel that still tonight, even after the wind is gone from the sails and the masts have toppled into the sea.
Late this afternoon, Gillette called to give us the results of Ellie's EKG from yesterday. We've had EKG's to monitor the health of Ellie's heart before, at Mayo. Our last one was in the fall of 2012. I learned today that at that time her QT interval was borderline prolonged. (It pays to have experts in Rett examining these tests...nobody at Mayo told us it was borderline.) I also learned today that while in the fall of 2012 it was 442(borderline), yesterday it was 485(worse yet.) At 500 it is no longer considered borderline, then it's considered Prolonged QT. Our new pediatrician feels that considering rett and all it's nasty impacts on the body, that we don't have much choice other than to keep a close eye on this. I asked the nurse on the phone what kinds of symptoms we should be aware of with prolonged QT, thinking perhaps there would be warning signs that it's gotten worse, etc. Her response was "Well it can be fatal." I'm just guessing here, but maybe the silence on my end gave her the idea that she'd perhaps gone a little too bluntly on that response. She followed it up by telling me that heart palpitations and irregular heart beat are typically symptoms of prolonged QT. Really a bummer that Ellie can't really tell us if she were having any of these symptoms! :( We go back to Gillette in 6 months and we'll continue to monitor her QT. Our nurse said that if her QT were to be more than 500, they would likely look into medications that could help shorten it.
It seems like just when I think perhaps we have a handle on life, we realize all over again that we really, really don't. Thanks for reading, praying and supporting us on this journey.
~Blessings
Angie
Tuesday, February 10, 2015
Monday, December 15, 2014
Super Mom??
I've heard this term thrown around lately, a couple of moms have called me "super mom." I usually laugh and say something like "yeah right." Honestly though, I feel the need to set the record straight.
What I want to say to the woman who just called me "super mom" is this...
You weren't here tonight when she refused her supper, shoving it across the table to me screaming only seconds after I set it in front of her. You didn't see me sigh REALLY big because it's the end of a very long day that started at 5:30am. I really would like to just coast from now until bedtime. If you were here, you would have seen tired in my eyes and in my spirit. I'm pretty sure "super mom" doesn't get weary.
You probably wouldn't approve of the yelling I did to FINALLY get my girls into bed either. Hmmm. Or that while I was giving the baby a bath in the big tub she toppled over and I was just a second to slow in my catch. I snuggled my naked, wet, little peanut though, and kissed her bumped little head (that might be the most "super mom" thing I did today.)
Unfortunately, my 'super mom' moment ended when I found miss "I don't want my supper" eating a bag of puppy chow...on the couch...covering herself and said couch...with puppy chow. As I drug her to the sink for a complete scrubbing, I lectured her on where we eat and what she is allowed to eat. I'm sure 'super mom' would have a better way of convincing than the scolding I did.
I caught myself wallowing in self-pity for a bit there in the puppy-chow moment. It started simple about cleaning up chocolate and powdered sugar from the furniture and little hands and face. It got complex quickly, thinking about five years from now...probably still cleaning puppy chow from bigger hands and face. Thinking about how to curb the pinching, kicking and scratching before then.
I'm betting 'super mom' never stresses or feels sorry for herself.
About the time everyone started to settle the oldest asked me if I wanted a hug. It caught me off guard because I thought she was about to ask for one my thing to extend bedtime and I almost said no, before quickly saying YES! What a great thing to ask your mom! Then, while I took one potty, I listened to another one singing to herself in her bed. What a sweet heart she has, I thought to myself as she sang a song about Jesus that she's heard on klove.com. I sat down to nurse and snuggle the baby and listened as she sang for about twenty minutes until she drifted off to sleep. I thought about this girl and how God has really used our totally out of the ordinary life to shape these precious girls. I'm setting her thinking how each one is being prepared for a special purpose and calling that God has set before them.
You know what I think, it's those last moments before bed. It's the hugs and snuggles and stories and listening that make a woman 'super mom'. Those are never the moments when I hear this. It's the busy, here and there, doing WAY TOO much moments that I hear the words 'super mom' and I think that's just totally backwards! So just so ya know...I was 'super mom' today but it definitely wasn't in the moment that you saw me in!
What I want to say to the woman who just called me "super mom" is this...
You weren't here tonight when she refused her supper, shoving it across the table to me screaming only seconds after I set it in front of her. You didn't see me sigh REALLY big because it's the end of a very long day that started at 5:30am. I really would like to just coast from now until bedtime. If you were here, you would have seen tired in my eyes and in my spirit. I'm pretty sure "super mom" doesn't get weary.
You probably wouldn't approve of the yelling I did to FINALLY get my girls into bed either. Hmmm. Or that while I was giving the baby a bath in the big tub she toppled over and I was just a second to slow in my catch. I snuggled my naked, wet, little peanut though, and kissed her bumped little head (that might be the most "super mom" thing I did today.)
Unfortunately, my 'super mom' moment ended when I found miss "I don't want my supper" eating a bag of puppy chow...on the couch...covering herself and said couch...with puppy chow. As I drug her to the sink for a complete scrubbing, I lectured her on where we eat and what she is allowed to eat. I'm sure 'super mom' would have a better way of convincing than the scolding I did.
I caught myself wallowing in self-pity for a bit there in the puppy-chow moment. It started simple about cleaning up chocolate and powdered sugar from the furniture and little hands and face. It got complex quickly, thinking about five years from now...probably still cleaning puppy chow from bigger hands and face. Thinking about how to curb the pinching, kicking and scratching before then.
I'm betting 'super mom' never stresses or feels sorry for herself.
About the time everyone started to settle the oldest asked me if I wanted a hug. It caught me off guard because I thought she was about to ask for one my thing to extend bedtime and I almost said no, before quickly saying YES! What a great thing to ask your mom! Then, while I took one potty, I listened to another one singing to herself in her bed. What a sweet heart she has, I thought to myself as she sang a song about Jesus that she's heard on klove.com. I sat down to nurse and snuggle the baby and listened as she sang for about twenty minutes until she drifted off to sleep. I thought about this girl and how God has really used our totally out of the ordinary life to shape these precious girls. I'm setting her thinking how each one is being prepared for a special purpose and calling that God has set before them.
You know what I think, it's those last moments before bed. It's the hugs and snuggles and stories and listening that make a woman 'super mom'. Those are never the moments when I hear this. It's the busy, here and there, doing WAY TOO much moments that I hear the words 'super mom' and I think that's just totally backwards! So just so ya know...I was 'super mom' today but it definitely wasn't in the moment that you saw me in!
Monday, October 27, 2014
Fall 2014
The last time I posted here was just prior to the Step Up Event. Seems like so long ago and yet I'm just finally wrapping up all the details from the event. We raised about $4300 for Rett Research (Girls Power 2 Cure)! I'm so grateful for the people that supported the event and who donated their own hard-earned money towards Rett Research. Amazing.
A lot has been going on in our corner of the world since the race. We purchased another rental house and then decided it'd make a better "flip" than a rental. Esther and I have spent the last 30 days working on it. We're blessed to have such a happy, easy to entertain baby! If you've been past and seen me doing the song and dance on the roof, in a lift or out in the yard... I promise I have not lost my mind completely...it's baby entertainment! It's been so much work but it's so rewarding to see each piece come together! I can't wait for it to be done and have a few days to do the normal things 'stay at home' momma's do!
Whenever we work on our houses, we always try to employ our renters. It's part of the project, part of the goal. This time around I have Lui helping me. Lui lives in one of our houses with his brother and family. He's lived in the US for a few years, originally from Micronesia; where he farmed bananas and yucca. I wish I knew more about him but this is pretty much all his brother told me. He can't tell me anything more about himself because he's deaf and doesn't speak. Lui uses a form of sign language but it's "Micronesian sign." From what I can understand, he was born deaf and since coming to the US has not been able to work. His brother told me that in Micronesia he never was inside. I cannot imagine what that must be like for him to come to the US and be trapped inside indefinitely with no hope for the future. I got Lui started working on the house they live in because he was always coming out to watch me work (which doesn't work for me! If you stand around, I put you to work!) One day I'd just had it and so went and got him a paint brush. I motioned for him to follow my lead in painting the foundation of the building. When we finished that job, I showed him a couple more things to do around the place. By the next morning he'd finished those! He loves to have something to do, which I totally understand! It's so fun to see his joy in working, in learning to do a job and completing it. He loves having my thumbs up and makes a point to show me each part he's completed. A lot of being around Lui is not so different than Ellie, in that I have to read his cues and facial expressions to guess at what he wants/needs. Sometimes we don't understand each other and we just have to leave it at that. The other day while we were mixing concrete, Lui was humming/singing to himself and it got me thinking what must it be like to try to make music when you've never heard music?! I wonder what it'd be like to live in a silent world. I really enjoy seeing Lui feel useful, giving him the satisfaction of having work to do, and the ability to earn his own money. I think that's something too many American people take for granted! I've thought so many times how I hope one day someone will give Ellie opportunities like this. It's not always the path of least resistance that we're called to. God puts people in our paths not only for us to serve, I've found often times He's also using them to work on us.
Speaking of using them to work on us...
Ellie's been working on my sleep issue lately. The base issue is that Momma needs sleep and Ellie does not. Apparently her system is telling her that anytime between midnight and 4am can be morning, totally her choice. This has been going on for a few weeks now. She doesn't seem to go back to sleep when I put her back in bed, usually talking to herself or saying 'momma' and tapping me every few minutes. With a baby AND Ellie in the house, sleep is a luxury this momma would like more of!
School conferences this week for the girls! I'm so pleased with all three of the school-girls and anticipate great conferences tomorrow. Ellie's been using a label-maker to complete homework and in-class work. It's nice because she can type things out and just print it on the spot on a little label sticker. It's a great idea except that she needs help peeling the backing from the labels b/c it's so tiny. She's doing so well sounding out words and phonetically spelling them. I love seeing the inventive spelling on her work! It's funny the things of hers that I'm keeping as keepsakes this year. I love seeing her own "writing" on her work. Something I take for granted with the other girls. I only wish we could get her communicating using her device more! I know she has SO MUCH in her head --- I want her to be able to get it out!
Baby Esther is 7 months old already. Crawling, sitting, beginning babblings and waving are filling her days. She's such a happy kid, amazed to sit in her bouncer outside watching squirrels, birds, leaves. She reminds me to take in the beauty of fall. She'll lay back in her playpen just watching the leaves move in the breeze, giggling. As Grandma Marilyn said in a letter to Eva this week, "it's so special having a baby in the house, everyone just seems happier." This is so true, the little things become amazing all over again when a baby does them.
I pray this update finds you all well.
Blessings to you.
~Angie
A lot has been going on in our corner of the world since the race. We purchased another rental house and then decided it'd make a better "flip" than a rental. Esther and I have spent the last 30 days working on it. We're blessed to have such a happy, easy to entertain baby! If you've been past and seen me doing the song and dance on the roof, in a lift or out in the yard... I promise I have not lost my mind completely...it's baby entertainment! It's been so much work but it's so rewarding to see each piece come together! I can't wait for it to be done and have a few days to do the normal things 'stay at home' momma's do!
Whenever we work on our houses, we always try to employ our renters. It's part of the project, part of the goal. This time around I have Lui helping me. Lui lives in one of our houses with his brother and family. He's lived in the US for a few years, originally from Micronesia; where he farmed bananas and yucca. I wish I knew more about him but this is pretty much all his brother told me. He can't tell me anything more about himself because he's deaf and doesn't speak. Lui uses a form of sign language but it's "Micronesian sign." From what I can understand, he was born deaf and since coming to the US has not been able to work. His brother told me that in Micronesia he never was inside. I cannot imagine what that must be like for him to come to the US and be trapped inside indefinitely with no hope for the future. I got Lui started working on the house they live in because he was always coming out to watch me work (which doesn't work for me! If you stand around, I put you to work!) One day I'd just had it and so went and got him a paint brush. I motioned for him to follow my lead in painting the foundation of the building. When we finished that job, I showed him a couple more things to do around the place. By the next morning he'd finished those! He loves to have something to do, which I totally understand! It's so fun to see his joy in working, in learning to do a job and completing it. He loves having my thumbs up and makes a point to show me each part he's completed. A lot of being around Lui is not so different than Ellie, in that I have to read his cues and facial expressions to guess at what he wants/needs. Sometimes we don't understand each other and we just have to leave it at that. The other day while we were mixing concrete, Lui was humming/singing to himself and it got me thinking what must it be like to try to make music when you've never heard music?! I wonder what it'd be like to live in a silent world. I really enjoy seeing Lui feel useful, giving him the satisfaction of having work to do, and the ability to earn his own money. I think that's something too many American people take for granted! I've thought so many times how I hope one day someone will give Ellie opportunities like this. It's not always the path of least resistance that we're called to. God puts people in our paths not only for us to serve, I've found often times He's also using them to work on us.
Speaking of using them to work on us...
Ellie's been working on my sleep issue lately. The base issue is that Momma needs sleep and Ellie does not. Apparently her system is telling her that anytime between midnight and 4am can be morning, totally her choice. This has been going on for a few weeks now. She doesn't seem to go back to sleep when I put her back in bed, usually talking to herself or saying 'momma' and tapping me every few minutes. With a baby AND Ellie in the house, sleep is a luxury this momma would like more of!
School conferences this week for the girls! I'm so pleased with all three of the school-girls and anticipate great conferences tomorrow. Ellie's been using a label-maker to complete homework and in-class work. It's nice because she can type things out and just print it on the spot on a little label sticker. It's a great idea except that she needs help peeling the backing from the labels b/c it's so tiny. She's doing so well sounding out words and phonetically spelling them. I love seeing the inventive spelling on her work! It's funny the things of hers that I'm keeping as keepsakes this year. I love seeing her own "writing" on her work. Something I take for granted with the other girls. I only wish we could get her communicating using her device more! I know she has SO MUCH in her head --- I want her to be able to get it out!
Baby Esther is 7 months old already. Crawling, sitting, beginning babblings and waving are filling her days. She's such a happy kid, amazed to sit in her bouncer outside watching squirrels, birds, leaves. She reminds me to take in the beauty of fall. She'll lay back in her playpen just watching the leaves move in the breeze, giggling. As Grandma Marilyn said in a letter to Eva this week, "it's so special having a baby in the house, everyone just seems happier." This is so true, the little things become amazing all over again when a baby does them.
I pray this update finds you all well.
Blessings to you.
~Angie
Monday, August 18, 2014
Life at breakneck speed...
Wow. Another school year is about to begin. I'm in awe of how the summer has flown by and how this year really is coming towards it's end. I'm sad for things that will be missed and for our summer freedom (while not really all that free) is coming to an end. Ellie & Eva will start first grade (in separate classrooms but in the same school.) My few years of teaching were in first grade at South and I remember fondly the happy progression of those little people. I can't believe our girls are about to embark. It makes them seem so big, and really they are so big!
Perspective I say, is an amazing thing. In March we welcomed our newest peanut, Esther Clara. Having a newborn and "big kids" is amazingly easier than having a newborn and little kids! Whoever said two years apart was the ticket -- they lied! It's actually the 6 year span that's perfect! We've been so delighted by the smooth transition from a family of 5 to a family of 6. Seriously, once you're outnumbered it's a wash! Really though, all of our girls LOVE being little mommies. Ellie despises a spitty face and is diligent about wiping Esther's face, much to her demise. She actually doesn't mind a spitty face! She's getting to the ripe age of 5 months, where she's going to let someone know when they've wronged her! What a joyful baby though. It's amazing to see how God gives each their unique personality and preferences. Esther LOVES music and bounces, laughs and dances in her bouncer, while Eva accompanies her on foot circling the bouncer. Ellie doesn't enjoy the song and dance in quite the same fashion and usually watches from a far off spot with hands over her ears. Emma loves the piano and is learning new songs at lightening speed! I'm thinking if our girls ever start a band, Ellie can be the one in the sound booth with the ear phones running all those BUTTONS!
Life is good. Even though there are never enough hours in the day or days in the week, we're learning to enjoy and embrace those that we have!
As we look towards school starting, I started thinking about lugging all that "Ellie-stuff" into school. For the first time actually looked into a handicapped license plate. That's a really permanent and visual thing, that we've avoided until now. When Nicholas and I talked about it this week, he was totally supportive of the idea. It just makes sense he said. So, tomorrow I'll take my papers and drive down to our courthouse and pick up plates with the little wheelchair logo. A lot of my friends have the little cowboy for the cattleman's club or the apple for the teachers, those are all demonstrations of their support for those clubs and groups. This is a club I'd rather not be a part of and I guess have tried to hide in, until now. This year it's become clear to us that people know. We've been through all the phases, every book calls it something different. I think perhaps, now, we're moving towards acceptance. Acceptance ... and expectation.
In a little less than two weeks, I will put on the Step Up race. This is my third year coordinating the event. What started as the desire to keep the event alive, has now transitioned to a fundraiser for Rett Research. This year 100% of the profits will go to Girl Power 2 Cure, a charity dedicated to CURING Rett Syndrome. I like the sounds of that and that's something I'm willing to work for, to expect. We pray with our sincerest hearts that one day, a cure will come to unlock our sweet girl. I tear, thinking about the things she'll have to say when that day comes. So, if you're a friend or family, or close by come join us in a race for a cure. Half Marathon, Relay Half Marathon and 5k Events. August 30, 2014 Starting @ 7:30am King's Pointe Resort.
Register or donate here... www.stepupstormlake.webs.com . We can't thank you enough for your support!
~Angie
Perspective I say, is an amazing thing. In March we welcomed our newest peanut, Esther Clara. Having a newborn and "big kids" is amazingly easier than having a newborn and little kids! Whoever said two years apart was the ticket -- they lied! It's actually the 6 year span that's perfect! We've been so delighted by the smooth transition from a family of 5 to a family of 6. Seriously, once you're outnumbered it's a wash! Really though, all of our girls LOVE being little mommies. Ellie despises a spitty face and is diligent about wiping Esther's face, much to her demise. She actually doesn't mind a spitty face! She's getting to the ripe age of 5 months, where she's going to let someone know when they've wronged her! What a joyful baby though. It's amazing to see how God gives each their unique personality and preferences. Esther LOVES music and bounces, laughs and dances in her bouncer, while Eva accompanies her on foot circling the bouncer. Ellie doesn't enjoy the song and dance in quite the same fashion and usually watches from a far off spot with hands over her ears. Emma loves the piano and is learning new songs at lightening speed! I'm thinking if our girls ever start a band, Ellie can be the one in the sound booth with the ear phones running all those BUTTONS!
Life is good. Even though there are never enough hours in the day or days in the week, we're learning to enjoy and embrace those that we have!
As we look towards school starting, I started thinking about lugging all that "Ellie-stuff" into school. For the first time actually looked into a handicapped license plate. That's a really permanent and visual thing, that we've avoided until now. When Nicholas and I talked about it this week, he was totally supportive of the idea. It just makes sense he said. So, tomorrow I'll take my papers and drive down to our courthouse and pick up plates with the little wheelchair logo. A lot of my friends have the little cowboy for the cattleman's club or the apple for the teachers, those are all demonstrations of their support for those clubs and groups. This is a club I'd rather not be a part of and I guess have tried to hide in, until now. This year it's become clear to us that people know. We've been through all the phases, every book calls it something different. I think perhaps, now, we're moving towards acceptance. Acceptance ... and expectation.
In a little less than two weeks, I will put on the Step Up race. This is my third year coordinating the event. What started as the desire to keep the event alive, has now transitioned to a fundraiser for Rett Research. This year 100% of the profits will go to Girl Power 2 Cure, a charity dedicated to CURING Rett Syndrome. I like the sounds of that and that's something I'm willing to work for, to expect. We pray with our sincerest hearts that one day, a cure will come to unlock our sweet girl. I tear, thinking about the things she'll have to say when that day comes. So, if you're a friend or family, or close by come join us in a race for a cure. Half Marathon, Relay Half Marathon and 5k Events. August 30, 2014 Starting @ 7:30am King's Pointe Resort.
Register or donate here... www.stepupstormlake.webs.com . We can't thank you enough for your support!
~Angie
Tuesday, October 29, 2013
Overcoming...Take that Rett!
I'm listening now to Mandisa's song "Overcomer" and it spurred me to come blog. An update is definitely long overdue. I find that we're already almost to November, fall really is beautiful in this part of the country. In spite of that sinking feeling that the snow and winds will soon be swirling outside, we have joy in the season we are in.
Ellie had a summer of change, of growing up, of putting things behind us, in the most joyous way possible. Not to say that change doesn't come hard, actually, really, really hard. We decided to learn how to use the toilet this summer. No small task for a girl who's body isn't 100% obedient to her commands. No small task for a daughter, equally as stubborn as her mother. Probably the most trying times we've had in our 7 years together, were had this summer. I can smile and laugh about it now, because we won and that made it all worth it.
Ellie has learned to use the toilet all the time, which is nothing short of a miracle. A blessing straight from God, really. We are overcomers! Whooo hooo! (Yes, I say that with a fisted arm-pump!)
Ellie also learned to ride her adapted tricycle, independantly. She rode 2 miles one night and followed that up by being the STAR of the 4th of July parade on her bike. I am so proud of the way she's overcome her body. So proud of the way that she's kicked Rett in the teeth and learned to do what she "shouldn't" be able to do. She's now showing her little sister what kindergarten is all about. Eva's flourishing in kindergarten, especially with such an experienced and competent guide. We requested that Ellie stay in kindergarten this year to work on her number sense and give her a little more time to develop her math skills before putting her into first grade. This means that Ellie (who's 7 now) and Eva (who is now 5) are both in kindergarten. It's been a great choice. We feel so so blessed by the women God has placed in this environment for both our girls. Emma is enjoying the freedom. flexibility, and one on one time of being home-schooled for 4th grade.
The girls are all having a great time announcing to anyone who will listen that they're soon going to have a baby in their house! We're due March 17 with baby number 4. :) They got to watch our little one on the ultrasound and take home little keepsake pictures. Ellie keeps reminding me of saying "mama mama" and pointing to my (growing) belly and then pointing to her feet. One of the pictures from the ultrasound clearly shows our little one's feet and toes as if pressed up against the screen. It's had an impression on her. I'm praying she's at doting once baby arrives, as she is now!! She's not known for her gentleness.
So much change in such a short time. All blessings and all things to be thankful and joyous about! I pray your fall is equally "full."
~Angie
Ellie had a summer of change, of growing up, of putting things behind us, in the most joyous way possible. Not to say that change doesn't come hard, actually, really, really hard. We decided to learn how to use the toilet this summer. No small task for a girl who's body isn't 100% obedient to her commands. No small task for a daughter, equally as stubborn as her mother. Probably the most trying times we've had in our 7 years together, were had this summer. I can smile and laugh about it now, because we won and that made it all worth it.
Ellie has learned to use the toilet all the time, which is nothing short of a miracle. A blessing straight from God, really. We are overcomers! Whooo hooo! (Yes, I say that with a fisted arm-pump!)
Ellie also learned to ride her adapted tricycle, independantly. She rode 2 miles one night and followed that up by being the STAR of the 4th of July parade on her bike. I am so proud of the way she's overcome her body. So proud of the way that she's kicked Rett in the teeth and learned to do what she "shouldn't" be able to do. She's now showing her little sister what kindergarten is all about. Eva's flourishing in kindergarten, especially with such an experienced and competent guide. We requested that Ellie stay in kindergarten this year to work on her number sense and give her a little more time to develop her math skills before putting her into first grade. This means that Ellie (who's 7 now) and Eva (who is now 5) are both in kindergarten. It's been a great choice. We feel so so blessed by the women God has placed in this environment for both our girls. Emma is enjoying the freedom. flexibility, and one on one time of being home-schooled for 4th grade.
The girls are all having a great time announcing to anyone who will listen that they're soon going to have a baby in their house! We're due March 17 with baby number 4. :) They got to watch our little one on the ultrasound and take home little keepsake pictures. Ellie keeps reminding me of saying "mama mama" and pointing to my (growing) belly and then pointing to her feet. One of the pictures from the ultrasound clearly shows our little one's feet and toes as if pressed up against the screen. It's had an impression on her. I'm praying she's at doting once baby arrives, as she is now!! She's not known for her gentleness.
So much change in such a short time. All blessings and all things to be thankful and joyous about! I pray your fall is equally "full."
~Angie
Thursday, April 18, 2013
From the Ashes
Today's a special anniversary for our family, which means I should blog right?! I mean it's only been like 6 months!
On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls. Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.
Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.
In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!
Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!
We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.
After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.
Kutless, "That's What Faith Can Do".
Here are the lyrics:
On this day two years ago we were still reeling from the tornado, staying with my husbands family trying to get a grasp on what we were supposed to do. Just thinking about it makes me feel a little bit nauseous. I remember the phone call. It was almost bedtime for the girls, I remember Nicholas answering and passing me the phone. I quietly retreated to my in-laws bedroom for privacy and he went out to the living room to entertain the girls. Dr.Renaud knew about the tornado though I don't remember how she knew. She played a sort of guessing game with me as to what I thought the results of Ellie's genetic test for Rett were, which I thought was strange at the time (actually I still think it was strange.) I tried to convince myself that they must be negative since she was being so lighthearted about it. I remember her apologizing just before she told me the result was positive, saying how she knew it couldn't come at a worse time. I'm not sure how but I held myself together. I asked questions, scheduled a visit for the next week to discuss the diagnosis and prognosis. As I hung up the phone I sunk into the corner of the bedroom and the flood of tears began. Nicholas was on the other side of the wall, his entire family just steps away, our girls...our Ellie playing just outside the bedroom. I felt so alone, so isolated and forgotten. The information I'd read spun in my head reminding me of the "phases" and the future prognosis. I was so literally crushed in spirit. April 2011 was definitely a time when we "fell into the ashes" as the song below says.
Since 2011, we've "made a new beginning." We launched ourselves into cleanup mode literally and emotionally. We have spent the last two years working with specialists, therapists, doctors, teachers and parents to ensure that we're doing everything we can to maintain Ellie's good health and to push her to achieve new milestones.
In the last year, Ellie's learned to read and spell words. She can successfully match words that she's practiced making to pictures showing us that she can read the word and understand it's meaning. She's made wonderful progress using her speech device (EchoPoint2) and routinely tells us how she's feeling. (We're beginning to remember the "spunk" Emma started to display around this age!) For example, telling her PT (as she entered the room) that she was "Done...Ready to go home... Frustrated." Gotta love that kind of hear-felt message!!
Ellie also learned to ride a bike this winter. It's a really awesome adapted tricycle! After half a dozen sessions practicing riding in the hospital hallway, she's doing really great and ready for spring to come so she can break it in on the bike-trail!
We continue to hope and pray that a cure is on the horizon. We live our lives to their fullest knowing that every day for each of us is nothing short of a gift. The last two years have changed us, have shown us things we otherwise wouldn't/couldn't have seen. I shake my head thinking about how crushed I felt then and how I can see now that it was a necessary part of our journey. God has used life to mold and shape our entire family. I really feel that without being so broken we wouldn't have agreed to take the journey he had ahead of us.
After the tornado and Ellie's diagnosis, as people came to our side to help, we vowed to turn their giving of time and resources into blessings for others. In 2011, we received a settlement from our insurance company on our house (the only part of our farm that was insured.) We opted to pay off our farm, fix our house over time, and turn that equity into rental properties that we could fix and rent reasonably to people who needed quality, affordable housing. Since 2011, we have purchased an apartment building and a couple houses (all that needed a LOT of work!) We've used these properties to support and minister to people who were still in the "ashes." I can't tell you the joy I find in seeing a family move from our apartments into a house (one that they can afford!!) Getting to be a part of their "new beginning" is truly a blessing for all of our family. It's fun to work when you can watch that work turn into a blessing for another family. I have found the greatest blessings in teaching skills to newcomers, as they work off their rent working on a house/apartment that another family will soon occupy. The relationships being built have grown so fast and so deeply that I can't begin to explain here. I simply want all of you to know that your help to our family, when we were in "the ashes," didn't stop with us... it's still moving forward. What a gift your love has given and that's the way it's supposed to be.
Kutless, "That's What Faith Can Do".
Here are the lyrics:
What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Gotta find the strength to rise
From the ashes
And make a new beginning
Anyone can feel the ache
You think it's more than you can take
But you're stronger
Stronger than you know
Don't you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
It doesn't matter what you've heard
Impossible is not a word
It's just a reason
For someone not to try
Everybody's scared to death
When they decide to take that step
Out on the water
It'll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
Overcome the odds
You don't have a chance
(That's what faith can do)
When the world says you can't
It'll tell you that you can
I've seen dreams that move the mountains
Hope that doesn't ever end
Even when the sky is falling
And I've seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That's what faith can do
That's what faith can do
Even if you fall sometimes
You will have the strength to rise
Wednesday, November 28, 2012
The blogging world has fallen off my list the last few months. Sad but true, life continues as we fall beneath the swells of it. Now the mixture of scents brings me back to this world that I have missed. A sweet fragrance of laundry soap, bath water and vomit. Mmmmm. Just like old times.
It's nearly 2am right now and I just finished putting Ellie back to bed after yet another night of vomiting. It makes me sad and frustrated. We've been nearly 4 years free of the cyclic vomiting and now it has reared it's ugly head. I'm out of practice and not as keenly tuned to her sounds pre-vomit...so I've washed a lot of sheets the past week and a half. Those of you that have followed me for a long time might remember reading on our original website at www.fightautism.webs.com about cyclic vomiting. From birth, Ellie cycled. Seemingly normal behavior all day and evening followed by a random non-waking incident of vomiting in the middle of the night, typically between 12 and 1 am. I just washed vomit out of Ellie's hair (which now nearly reaches her lower back) again, for about the 7th or 8th time in the past week and a half. She literally almost slept through the bath. It's both strange and terrifying. When I find her she's usually flat on her back with her face and neck covered in vomit. I've always feared aspiration and we've been blessed by her always clearing her own airway. It' helps too that she's close to my room and I'm usually already bedside as she's vomiting. It's amazing (and such a blessing) that she always has managed to clear her airway after vomiting while laying on her back. God is good, even as we struggle.
I feel washed over with an entire series of emotions all over again. Each round of life, every change, every new development forces me into another phase of somethingness. I don't want to say "grief" because I want to think that I've grieved and I'm past it. Even as I write it, I laugh at myself. How many times can a person cycle through denial?? I just read a book talking about how grief isn't really phases, but rather waves that wash over you and then return to wash over again.
As I'm washing through her long locks of hair, thinking about how rotten it is that this has returned, I'm wondering if Mayo would have any new insight into this. We've run the GI workups before, done days of monitoring watching for an EEG correlate, nothing's ever come of it. I'm weighing the advantage and possibilities of testing, while considering the disadvantages of a scope, more x-rays, radioactive barium. I'm wondering what Ellie would choose; would she say, "It's not that bad to throw up in the night. Ten nights of vomiting is better than all the annoyance of testing. I cry less tears over vomiting in my own house than I do in the hospital doing all those tests." I resolve to ask her tomorrow, to give her the choice, let her decide this time. I'm coaching myself to really let her have the final say, I'm prepping in my head how I'll help her weigh the pros and cons and then really turn it over to her and let her decide.
The fresh sent of vomit still lingers, regardless of the pile of blankets and jammies already swirling in the washer. I'm thinking about how early tomorrow will come, the list of things to do tomorrow, already knowing that the day will be so full. I am reminded that life continues, even as we fall beneath the swells of it.
It's nearly 2am right now and I just finished putting Ellie back to bed after yet another night of vomiting. It makes me sad and frustrated. We've been nearly 4 years free of the cyclic vomiting and now it has reared it's ugly head. I'm out of practice and not as keenly tuned to her sounds pre-vomit...so I've washed a lot of sheets the past week and a half. Those of you that have followed me for a long time might remember reading on our original website at www.fightautism.webs.com about cyclic vomiting. From birth, Ellie cycled. Seemingly normal behavior all day and evening followed by a random non-waking incident of vomiting in the middle of the night, typically between 12 and 1 am. I just washed vomit out of Ellie's hair (which now nearly reaches her lower back) again, for about the 7th or 8th time in the past week and a half. She literally almost slept through the bath. It's both strange and terrifying. When I find her she's usually flat on her back with her face and neck covered in vomit. I've always feared aspiration and we've been blessed by her always clearing her own airway. It' helps too that she's close to my room and I'm usually already bedside as she's vomiting. It's amazing (and such a blessing) that she always has managed to clear her airway after vomiting while laying on her back. God is good, even as we struggle.
I feel washed over with an entire series of emotions all over again. Each round of life, every change, every new development forces me into another phase of somethingness. I don't want to say "grief" because I want to think that I've grieved and I'm past it. Even as I write it, I laugh at myself. How many times can a person cycle through denial?? I just read a book talking about how grief isn't really phases, but rather waves that wash over you and then return to wash over again.
As I'm washing through her long locks of hair, thinking about how rotten it is that this has returned, I'm wondering if Mayo would have any new insight into this. We've run the GI workups before, done days of monitoring watching for an EEG correlate, nothing's ever come of it. I'm weighing the advantage and possibilities of testing, while considering the disadvantages of a scope, more x-rays, radioactive barium. I'm wondering what Ellie would choose; would she say, "It's not that bad to throw up in the night. Ten nights of vomiting is better than all the annoyance of testing. I cry less tears over vomiting in my own house than I do in the hospital doing all those tests." I resolve to ask her tomorrow, to give her the choice, let her decide this time. I'm coaching myself to really let her have the final say, I'm prepping in my head how I'll help her weigh the pros and cons and then really turn it over to her and let her decide.
The fresh sent of vomit still lingers, regardless of the pile of blankets and jammies already swirling in the washer. I'm thinking about how early tomorrow will come, the list of things to do tomorrow, already knowing that the day will be so full. I am reminded that life continues, even as we fall beneath the swells of it.
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