I enjoyed Sandy's guest post. It managed to say what I've said for years all in one place...very clearly. I appreciated her words...and as usual experienced the thankfulness for hearing many of my thoughts from someone else I don't know very well...in essence repeating the you-are-not-alone refrain.
I came back and dwelled on her words of "don't give advice, unless asked for it"....this is SO true.
Many times I have been surprised by what hurts. Yes, there are some behaviors and words that hurt, and you can't be desperately surprised that they do...but then there are the moments that sneak up and knock you breathless...and the pain is shocking...
Three specific incidents come to mind. (If this was you, please don't be hurt, I just want to be transparent here.)
#1. When we had Elise, and were drowning in our shattering dreams and physical implications of her health....I had a loved one look me in the eyes and ask "Other than the worry, it's not that big of a deal to have a child with special needs. Is it?" well....um, no...but the worry was resulting in a stress that was all encompassing, and we were gasping for air. We had just been told that she had a heart murmur, and that it "may or may not correct itself"...but it was a maybe. So, at the time, she was just a baby that needed everything that any other baby needed...and needed nothing else just then. But it felt like I had been slapped. I ended up responding, "No. Other than the worry, it's just the same." Which was true...but that is the most binding factor of being a parent...worrying over your child, whether you are dealing in special needs or not....and the long term implications of a diagnosis can be a brutal worry. Her "practical" response that I am sure was supposed to encourage me in the normalcy of my life made me want to snatch her hair out by the roots...To her credit, she did apologise for it years later...
#2. Again, a few years later, it occurred to us that our will was making a lot of assumptions. Did those chosen to take our children still feel comfortable with the complication that Elise had all these health/behavior issues if something happen to us? Thankfully, when we approached them they responded positively, and we were reassured. But in the throws of these thoughts, someone commented that, I was lucky, because there is no way she could handle it... Again, the attempt was to reassure me, but the back-hand of that comment was that someone would refuse my baby, choose not to love her. That despite her miraculous self, Elise was "too much to handle" for others...it broke my heart.
#3. I am one step from nauseated whenever I realize that I am going to have to go to the grocery with Elise. When she was little, she would happily gnaw on a cereal box...NO one shopped happier than she....nowadays, there may be an emotional meltdown, growling, impulsive throwing or raking of items to the floor, running away...SO many options! More often than not, there is a "complication" to the shopping trip...she is getting better because I refuse to stop going out with her...I cannot give up my life over the educational process...and eventually, we'll get there...but the singularly most infuriating moment of my life as the mother of a child with special needs came after a particularly heinous shopping trip. We had no milk, toilet paper, or cereal...and all the substitutes had been exhausted...there was no more putting off the trip...and Elise spent the entire grocery trip doing a wailing scream/growl...she was exhausted after a day at school...by the time I got to the check out, I had a headache, my shoulder had the weird stress pinch going, and was I beginning to sweat...and a woman approached me with the "I'm going to help you whether you want to or not" look on her face. She walked up to me and told me that her best friend was using this great program with her child to make her behave appropriately...and rattled off the website. I would have resented her, but forgotten the situation if she hadn't followed up with, "You really have to have high expectations for your children's behavior or they will take advantage of you." I considered burning her at the stake for being a witch....and then dancing around while stomping the ashes... It was beyond not helpful. The sheer fact that I was IN the grocery store was evidence of my high expectations...and when someone has hit an all time low is NOT the time to offer behavior advice...concerning typical OR special kids...that's when you hug that mom. If you know them, feel free to bring it up on a day when their child has had a spectacularly good day...otherwise don't even go there. But a prayer on their behalf is NEVER misplaced!
Wednesday, September 22, 2010
The Day to Day #2 - Hybrid Us/Them
I have lotsa kids. Well, 4. And only one of my kiddies has special needs. The rest of my kids are more or less typical...which, if you have kids, you know that can encompass a REALLY wide range! :)
I have one foot in Very Complex and one foot in Normal. It is a weird place to be. I often find myself answering the questions from my own children about their sister that the outside world also asks. For those who wonder, yes, it is every bit as difficult to answer siblings as friends or strangers. I'll be blunt, it may even be trickier.
(Quickie cheat sheet, in case you don't know us: Gabriel is 12, Elise is 7 (almost 8), Amelia is 4, and Charlotte is 18 months.)
When my other children ask why there is a double standard, I have to answer. I have to explain why their sister is different...and explain it enough that they have working information, but not so much that they tune me out. I have to make it clear that their sister is still their sister, but the levels of ability and necessity are not on a even playing field. I have to meet needs and I have to apply appropriate expectations. I can expect Amelia to get completely dressed, I can expect Elise to struggle with fasteners. I can expect Amelia to follow more complex directions than Elise. I can expect Amelia to know what Elise says better than Gabriel. (We tease that she is bi-lingual. She speaks English and Elise-ese fluently.) I have to intervene more for Elise than my other kids and pray that they won't resent it...I can expect Gabriel to assume all his sisters need intervention, while I can expect Amelia to resent that I make her be more independent and responsible than Elise...because she can. I can expect Charlotte to ply Elise with more requests of aid in stealing snacks because Elise is a willing accomplice where Amelia will mother her, and probably tell her "no".
We've taken the tack like we've handled the "sex" questions. We answer ONLY what they are asking. If you answer any more, then either their eyes glaze over or they have more in their head than they need.
I will say, that we had answered all of Gabriel's questions about Elise, but when we got pregnant with Amelia, he was 7. When we told him that she was going to be a girl too, he responded that "Ah, man!" He wanted a boy cause they would walk and talk sooner..."girls take FOREVER!" After I picked myself up off the floor from giggling, I told him that it was just because Elise had Down Syndrome, and not every girl takes 2 and 1/2 years to walk! He said that is wasn't that bad then. :) I just thought it was cool that he thought she was normal...and loved her as is.
The older she's gotten, the more complex his questions have gotten. But the acceptance hasn't changed much...for which I am thankful.
Amelia on the other hand has a more difficult seat. She is 4 years younger and has grown and developed normally and in some ways precociously. She is a tall 4 year old to boot. So, they are almost the same size and have the same interests. Amelia is more coordinated and has better speech. She is both more clear and more understandable and uses more complex language. She also grasps more complex subjects. Recently she has really come to understand the unfairness of the expectations placed on her and those placed on Elise...she doesn't like that she has more responsibilities and expectations. But we cannot change this, or we will be doing her a disservice.
I find myself tearing up over the fact that Amelia can put on her Polly Pockets clothes, but Elise cannot...but I console myself over the fact that Amelia is always happy to help her...
I wonder sometimes if God made my kids "nurturers" by nature or if they have grown that way by having Elise in their lives. I'm thankful either way.
I wonder sometimes if I am "special needs parent" or a "typical parent" and I like to think I am a hybrid. I like to think that I can understand better what people on the outside wonder...and what they need to ask...but because I love my Elise, I know how I wish they would respond...I guess we'll see if this ends up being a blessing or curse...Nah, I guess I don't need to wait, it's a blessing...I just hope it ends up being a blessing to others, too...I don't need to hold too tightly to God's gifts!
I have one foot in Very Complex and one foot in Normal. It is a weird place to be. I often find myself answering the questions from my own children about their sister that the outside world also asks. For those who wonder, yes, it is every bit as difficult to answer siblings as friends or strangers. I'll be blunt, it may even be trickier.
(Quickie cheat sheet, in case you don't know us: Gabriel is 12, Elise is 7 (almost 8), Amelia is 4, and Charlotte is 18 months.)
When my other children ask why there is a double standard, I have to answer. I have to explain why their sister is different...and explain it enough that they have working information, but not so much that they tune me out. I have to make it clear that their sister is still their sister, but the levels of ability and necessity are not on a even playing field. I have to meet needs and I have to apply appropriate expectations. I can expect Amelia to get completely dressed, I can expect Elise to struggle with fasteners. I can expect Amelia to follow more complex directions than Elise. I can expect Amelia to know what Elise says better than Gabriel. (We tease that she is bi-lingual. She speaks English and Elise-ese fluently.) I have to intervene more for Elise than my other kids and pray that they won't resent it...I can expect Gabriel to assume all his sisters need intervention, while I can expect Amelia to resent that I make her be more independent and responsible than Elise...because she can. I can expect Charlotte to ply Elise with more requests of aid in stealing snacks because Elise is a willing accomplice where Amelia will mother her, and probably tell her "no".
We've taken the tack like we've handled the "sex" questions. We answer ONLY what they are asking. If you answer any more, then either their eyes glaze over or they have more in their head than they need.
I will say, that we had answered all of Gabriel's questions about Elise, but when we got pregnant with Amelia, he was 7. When we told him that she was going to be a girl too, he responded that "Ah, man!" He wanted a boy cause they would walk and talk sooner..."girls take FOREVER!" After I picked myself up off the floor from giggling, I told him that it was just because Elise had Down Syndrome, and not every girl takes 2 and 1/2 years to walk! He said that is wasn't that bad then. :) I just thought it was cool that he thought she was normal...and loved her as is.
The older she's gotten, the more complex his questions have gotten. But the acceptance hasn't changed much...for which I am thankful.
Amelia on the other hand has a more difficult seat. She is 4 years younger and has grown and developed normally and in some ways precociously. She is a tall 4 year old to boot. So, they are almost the same size and have the same interests. Amelia is more coordinated and has better speech. She is both more clear and more understandable and uses more complex language. She also grasps more complex subjects. Recently she has really come to understand the unfairness of the expectations placed on her and those placed on Elise...she doesn't like that she has more responsibilities and expectations. But we cannot change this, or we will be doing her a disservice.
I find myself tearing up over the fact that Amelia can put on her Polly Pockets clothes, but Elise cannot...but I console myself over the fact that Amelia is always happy to help her...
I wonder sometimes if God made my kids "nurturers" by nature or if they have grown that way by having Elise in their lives. I'm thankful either way.
I wonder sometimes if I am "special needs parent" or a "typical parent" and I like to think I am a hybrid. I like to think that I can understand better what people on the outside wonder...and what they need to ask...but because I love my Elise, I know how I wish they would respond...I guess we'll see if this ends up being a blessing or curse...Nah, I guess I don't need to wait, it's a blessing...I just hope it ends up being a blessing to others, too...I don't need to hold too tightly to God's gifts!
Guest Blogger - Sandy - Dream New
I am so excited that I can't hardly stand it! Our first Guest Blogger!! Please welcome with me:
Sandy Van Orden:
"Our son was 4 months old when I noticed when he was different.
He ate like any other baby. He slept like any other baby. He cried....well, his cry was unusual. I know now he was having seizures, but it took three months to figure that out. And by the end of those three months, my husband and I were sleeping on a cot in a hospital, next to our chubby, little seven-month-old strapped to a bed. And it was that uncomfortable, unfamiliar, and undesirable cot that would become a metaphor for the news we would receive about our son's challenges for the future.
Fast forward through seven l-o-n-g years of news. To be fair, there was a lot of good news! My son's alive today though the doctors wondered aloud if he would be. He is not retarded though they speculated he might be. And he's not epileptic though all signs indicated he ought to be. But there was bad news, too. He has challenges. Some brutal ones. He's got delays. Some heartbreaking ones. He's not, well...typical.
And there's the rub. Until I no longer had it, I never appreciated the beauty of normal. Nor did I understand the allure of the typical child until I was faced with raising a son who wasn't one. I had spent 9 months dreaming dreams for my first little boy. And they could not have been more different than our reality. I'd envisioned him learning to crawl in our living room, not in the neurologist's office. I'd pictured scheduling our lives around t-ball games, not in-home therapy appointments. I'd imagined my son the most popular boy in the school...not the last one to be picked for a team. I had banked on normal. But my dream of normal disintegrated right before my very eyes.
The death of a dream...whatever the dream may be...hurts. Not just hurts - it throbs. For some of us, our dreams are crushed through the news that our child has extra or different needs. But for others of us, they decimated by a husband who claims he's fallen out of love. Or by the news that our physical bodies are failing us. Some of us are swimming upstream through financial ruin, job loss, rebellious children or abuse. Dreams can be dismantled in more ways than one. And each way is hard.
But it's in the hard where we find common ground. yes, the discovery that our child is different can be a cruel and merciless one. We grieve, mourn, and weep at this new, callous truth that has so thoughtlessly invaded our lives. But sorrow isn't reserved for the parents of special needs children.
All women understand loss. We all understand wounds. We understand despair. We know what it's like to be overwhelmed and under-prepared. And it's on the bridge where we meet. The women with typical children...and the women with atypical children.
The death of a dream...any dream...calls for compassion, not advice. It calls for understanding, not judgement. It calls for unity, not abandonment. It calls for hugs! (Lots of them!) It calls for prayer.
It calls for a friend. Not an us and them. It calls for an us plus them.
So how can you be a plus in someone's life when her life seems so different from your own?
1. Listen first. Advise only if and when she asks.
2. Meet practical needs. Does she need meals? A running partner? A babysitter? A maid? Discover the need and meet it.
3. Ask direct questions, and listen thoughtfully. She will appreciate your interest in the specifics of her child's challenges and in the progress (if any) her child is making.
4. Laugh with her. It's good medicine.
5. Pray for your friend. She needs it.
Take the time to walk in someone else's shoes. When you do, you will bless your friend. You will become vital and irreplaceable part of her new dream for her child. And, in time as she's able, she'll pass along to someone else who needs it what you've given her_love, hope, and the courage to dream new."
Sandy Van Orden:
"Our son was 4 months old when I noticed when he was different.
He ate like any other baby. He slept like any other baby. He cried....well, his cry was unusual. I know now he was having seizures, but it took three months to figure that out. And by the end of those three months, my husband and I were sleeping on a cot in a hospital, next to our chubby, little seven-month-old strapped to a bed. And it was that uncomfortable, unfamiliar, and undesirable cot that would become a metaphor for the news we would receive about our son's challenges for the future.
Fast forward through seven l-o-n-g years of news. To be fair, there was a lot of good news! My son's alive today though the doctors wondered aloud if he would be. He is not retarded though they speculated he might be. And he's not epileptic though all signs indicated he ought to be. But there was bad news, too. He has challenges. Some brutal ones. He's got delays. Some heartbreaking ones. He's not, well...typical.
And there's the rub. Until I no longer had it, I never appreciated the beauty of normal. Nor did I understand the allure of the typical child until I was faced with raising a son who wasn't one. I had spent 9 months dreaming dreams for my first little boy. And they could not have been more different than our reality. I'd envisioned him learning to crawl in our living room, not in the neurologist's office. I'd pictured scheduling our lives around t-ball games, not in-home therapy appointments. I'd imagined my son the most popular boy in the school...not the last one to be picked for a team. I had banked on normal. But my dream of normal disintegrated right before my very eyes.
The death of a dream...whatever the dream may be...hurts. Not just hurts - it throbs. For some of us, our dreams are crushed through the news that our child has extra or different needs. But for others of us, they decimated by a husband who claims he's fallen out of love. Or by the news that our physical bodies are failing us. Some of us are swimming upstream through financial ruin, job loss, rebellious children or abuse. Dreams can be dismantled in more ways than one. And each way is hard.
But it's in the hard where we find common ground. yes, the discovery that our child is different can be a cruel and merciless one. We grieve, mourn, and weep at this new, callous truth that has so thoughtlessly invaded our lives. But sorrow isn't reserved for the parents of special needs children.
All women understand loss. We all understand wounds. We understand despair. We know what it's like to be overwhelmed and under-prepared. And it's on the bridge where we meet. The women with typical children...and the women with atypical children.
The death of a dream...any dream...calls for compassion, not advice. It calls for understanding, not judgement. It calls for unity, not abandonment. It calls for hugs! (Lots of them!) It calls for prayer.
It calls for a friend. Not an us and them. It calls for an us plus them.
So how can you be a plus in someone's life when her life seems so different from your own?
1. Listen first. Advise only if and when she asks.
2. Meet practical needs. Does she need meals? A running partner? A babysitter? A maid? Discover the need and meet it.
3. Ask direct questions, and listen thoughtfully. She will appreciate your interest in the specifics of her child's challenges and in the progress (if any) her child is making.
4. Laugh with her. It's good medicine.
5. Pray for your friend. She needs it.
Take the time to walk in someone else's shoes. When you do, you will bless your friend. You will become vital and irreplaceable part of her new dream for her child. And, in time as she's able, she'll pass along to someone else who needs it what you've given her_love, hope, and the courage to dream new."
Wednesday, September 15, 2010
The Cadillac of Disabilities - Rant #3
When you are "dealing" each and every day with something, you don't really want to hear someone tell you that your child has the "Cadillac of Disabilities". I mean really, Really, REALLY don't want to hear this.........
The truth is, Elise probably has an "easy" disability. We know what she has. There is a clear, definitive way of testing for it. It is very simple nowadays to test for it....and no chance of missing it. While there is a wide range of time-tables and medical issues that may occur, there are many aspects that are defined by the chromosomal framework.
The person that told me this has not one, but two children with a profound degenerative disability...that they were born with, but that did not manifest until they were older children. They were "normal" while they were young, but they are now losing verbal control, are in wheelchairs, and are no longer independent at all. They are in their late teens, the time in life you should be letting your kids try their wings in the wide world, not working backwards...
My girlfriend, that I tease is my "borrowed" friend, has 4 kids as well, and every time she turns around one of them has some crazy new issue that is virtually indefinable. None of the issues are able to be linked together to "make" a label. Allergies that cause myriad medical effects, sensory issues that are never "enough" to earn educational intervention, and now her oldest is "day-dreaming" in class. Her gut told her that it was not right. She was just told that this child is not day-dreaming, she is having mini-seizures. WHAT? There will be further tests, but they are flying blind...they have no starting point. There is no One Test that will be able to give her parents an answer or a framework of what to expect.
With Down Syndrome, at least we know to screen for certain things. We know that many people with Down Syndrome in previous generations did not "die from the Downs" nor did they start with such low IQ's. That, in fact, children died from heart conditions that now can be surgically corrected. 50 years ago, the medical community told parents not to let them run or get too excited because their heart "could not take it". Thyroid left unchecked caused not only weight issues, but would actually cause mental retardation that would drop their IQ significantly over years... Vision, hearing, and blood work screenings prevent multitudes of secondary diagnoses. We learn more and more as the years progress. The chemo protocol that was followed for Elise had been used on less than 20 children when we decided on it. They had learned the while the fragile construction of cells made them more susceptible to cancer, the fragility of the cells also allowed less aggressive chemo to have better results with fewer side effects. (Not that this made it all sweetness and light!) The more aggressive chemo actually caused their bodies more damage than it helped...crazy, huh?
The monkey wrenches that come up now are the secondary diagoses of Autism, ADHD, Hypothyroidism, Leukemia, Cardiac malformations... The primary diagnosis of Down Syndrome is becoming fairly straightforward...not easy, but more understandable in general.
I am thankful that we have the answers we do. I am thankful that we are not doing this in previous generations...I am thankful that there are more opportunities and hope!
I am thankful that I get to watch my girl run and play and not worry that her body will turn on her...she gets to relish life...and I get to sit back and ride in her Cadillac! :)
The truth is, Elise probably has an "easy" disability. We know what she has. There is a clear, definitive way of testing for it. It is very simple nowadays to test for it....and no chance of missing it. While there is a wide range of time-tables and medical issues that may occur, there are many aspects that are defined by the chromosomal framework.
The person that told me this has not one, but two children with a profound degenerative disability...that they were born with, but that did not manifest until they were older children. They were "normal" while they were young, but they are now losing verbal control, are in wheelchairs, and are no longer independent at all. They are in their late teens, the time in life you should be letting your kids try their wings in the wide world, not working backwards...
My girlfriend, that I tease is my "borrowed" friend, has 4 kids as well, and every time she turns around one of them has some crazy new issue that is virtually indefinable. None of the issues are able to be linked together to "make" a label. Allergies that cause myriad medical effects, sensory issues that are never "enough" to earn educational intervention, and now her oldest is "day-dreaming" in class. Her gut told her that it was not right. She was just told that this child is not day-dreaming, she is having mini-seizures. WHAT? There will be further tests, but they are flying blind...they have no starting point. There is no One Test that will be able to give her parents an answer or a framework of what to expect.
With Down Syndrome, at least we know to screen for certain things. We know that many people with Down Syndrome in previous generations did not "die from the Downs" nor did they start with such low IQ's. That, in fact, children died from heart conditions that now can be surgically corrected. 50 years ago, the medical community told parents not to let them run or get too excited because their heart "could not take it". Thyroid left unchecked caused not only weight issues, but would actually cause mental retardation that would drop their IQ significantly over years... Vision, hearing, and blood work screenings prevent multitudes of secondary diagnoses. We learn more and more as the years progress. The chemo protocol that was followed for Elise had been used on less than 20 children when we decided on it. They had learned the while the fragile construction of cells made them more susceptible to cancer, the fragility of the cells also allowed less aggressive chemo to have better results with fewer side effects. (Not that this made it all sweetness and light!) The more aggressive chemo actually caused their bodies more damage than it helped...crazy, huh?
The monkey wrenches that come up now are the secondary diagoses of Autism, ADHD, Hypothyroidism, Leukemia, Cardiac malformations... The primary diagnosis of Down Syndrome is becoming fairly straightforward...not easy, but more understandable in general.
I am thankful that we have the answers we do. I am thankful that we are not doing this in previous generations...I am thankful that there are more opportunities and hope!
I am thankful that I get to watch my girl run and play and not worry that her body will turn on her...she gets to relish life...and I get to sit back and ride in her Cadillac! :)
Heads Up - Information Blitz :)
Hey! SO here's a piece of information for my local friends...and thought I'd just try and get it out. A friend contacted me to offer this up for those who would be interested:
TACA (Talking about Curing Autism) is having a meeting this Sunday, September 19, 2010, from 2 until 4 at Emory John's Creek Hospital. Dr. Bob Sears will be the guest speaker and will be speaking on his new book, The Autism Book. This will be a great opportunity to ask questions and hear about his research.
There is no charge, but parents must pre-register at the TACA website: http://meetup.talkaboutcuringautism.org/georgia/
Please pass this along to anyone you think may be interested!
Thanks so much!
TACA (Talking about Curing Autism) is having a meeting this Sunday, September 19, 2010, from 2 until 4 at Emory John's Creek Hospital. Dr. Bob Sears will be the guest speaker and will be speaking on his new book, The Autism Book. This will be a great opportunity to ask questions and hear about his research.
There is no charge, but parents must pre-register at the TACA website: http://meetup.talkaboutcuringautism.org/georgia/
Please pass this along to anyone you think may be interested!
Thanks so much!
Monday, September 13, 2010
Speaking of Encouragement - Here's an opportunity!
If yesterday's post "got to you"...and you are looking for those opportunities to encourage people, here is a great one!
Run over to Facebook and encourage this mama and her son. Friends for Cian is a group to support in prayer; verbally; and if possible, financially a family that was just handed a devastating diagnosis.
They've been struggling for years to figure out what was causing Cian's (pronounced "Key-an") debilitating pain, and learned only just last week that he has something called Pediatric Chiari, which you can read up on in the link, but the short version is that the brain is slipping down and causing compression on the spinal cord. There is no "cure". They are hoping that it will be able to be fixed in a single surgery, the fact is, it often takes several. There are very few surgeons that will even attempt this surgery. Nobody likes moving the brain around, and this particular situation involves both the brain and the spinal cord...which are both touchy parts of the body. Miraculously, the neurosurgeon that is probably going to be doing Cian's surgery is Dr. Jorge Lazareff, the same one that separated the Guatemalan twins a few years ago. (If you are a TLC junkie like me, you probably watched the special.)
But there are SO many stressors going on including thoughtless teachers, financial stress (their current insurance likes to encourage health, but they don't like paying much to help fix illnesses), and most importantly the pain and health of their boy! There is also an increasing concern that their youngest daughter may also have this.
I really hope that you will feel led to give the amount of a coffee (you can give it up for a day!) and most importantly, pray for this family!!! They need a miracle and peace. And if you can do either one, post up on their wall that they are in your prayers and thoughts, remind them that they are not alone!
Run over to Facebook and encourage this mama and her son. Friends for Cian is a group to support in prayer; verbally; and if possible, financially a family that was just handed a devastating diagnosis.
They've been struggling for years to figure out what was causing Cian's (pronounced "Key-an") debilitating pain, and learned only just last week that he has something called Pediatric Chiari, which you can read up on in the link, but the short version is that the brain is slipping down and causing compression on the spinal cord. There is no "cure". They are hoping that it will be able to be fixed in a single surgery, the fact is, it often takes several. There are very few surgeons that will even attempt this surgery. Nobody likes moving the brain around, and this particular situation involves both the brain and the spinal cord...which are both touchy parts of the body. Miraculously, the neurosurgeon that is probably going to be doing Cian's surgery is Dr. Jorge Lazareff, the same one that separated the Guatemalan twins a few years ago. (If you are a TLC junkie like me, you probably watched the special.)
But there are SO many stressors going on including thoughtless teachers, financial stress (their current insurance likes to encourage health, but they don't like paying much to help fix illnesses), and most importantly the pain and health of their boy! There is also an increasing concern that their youngest daughter may also have this.
I really hope that you will feel led to give the amount of a coffee (you can give it up for a day!) and most importantly, pray for this family!!! They need a miracle and peace. And if you can do either one, post up on their wall that they are in your prayers and thoughts, remind them that they are not alone!
Sunday, September 12, 2010
National Day of Encouragement
I just read about this on a friend's blog and then, me being me, confirmed it on Wikipedia and checked out the day's history on their own site. So, according to my homework,
HAPPY DAY OF ENCOURAGEMENT!!
I'll be honest, I probably would have run with it regardless...just because it is a really cool idea. I like it almost as much as the Victorian May Day, where they put flowers on people's doorsteps...the sweet equivalent of ringing the doorbell and running...I've always wanted to do that one...someday I will. It's on my bucket list. Seriously.
ANYWAY! As I've mentioned before, one of the primary goals of this blog was encouragement, the other being education. So, I'm going to run with it today.
The mind-blowing synopsis it this "You Are Not Alone!"
First and most importantly, God is a Loving Father (even if your earthly father wasn't, He Is!) And has promised, "I will never leave you or forsake you." In those specific words, twice in fact, in Deuteronomy and Hebrews. And in Psalm 34:4 David even gave a personal testimony that He "sought the Lord, and He answered me; He delivered me from all of my fears!"
Second of all, I have said before that parenting is not easy. I don't care if you have typical kids or kids with "stuff". It is NEVER goes according to what you had planned in your head before you got there. In fact, I am going to go one better, LIFE will not go the way you had planned. And, I'd just like to say, that is probably best. I am doing a Beth Moore Bible study of Esther and there is a phrase that is used in the Hebrew that sets up a story in a grand way that always "introduce impending catastrophe or doom". I dare you to pick a moment in the Bible where there is a catastrophe and where the final conclusion is not so amazing makes your idea of happily-ever-after look paltry.
Now, I'm hopefully far from the conclusion in my own life, but at every juncture where I seriously don't think I'll ever be able to lift my head from the weight, the mini-conclusions have me dancing more happily than I thought possible. Even over tiny stuff. I have a sneaking suspicion, it will only get better.
Our responsibility in this is to find people to help you with your burden and help them with theirs. If everyone's weight is lighter, AND you have a friend, then you have a mini-party right there!
I believe that we, as a society, and even more as a "Special Needs" community, tend to closet ourselves from each other when we struggle. When things are not okay we have difficulty reaching out.
Those whose life feels like it is imploding from pain and pressure don't want to reach out. We feel like it will take too much energy, that we don't have enough to spare. Those on the outside, who seem to be getting along pretty well, don't want to "interfere", "complicate", "rub their face in 'normal'", or "bother" those who desperately need the phone call, the visit, the cup of coffee, the written note, the prayer. This in turn causes those who are drowning to feel even more isolated and depressed, which makes the struggle even more exhausting.
Take it from me, even if you feel awkward, the phone call helps. Even if you write the same note as 10 other people and the same as you wrote last week, it is encouraging. I have an entire under-bed storage box of notes from when Elise was on Chemo. My kids will have to throw it out when I die, because I Cannot.throw.them.away. And I didn't have any idea who wrote more than half of them.
I dare you to reach out for someone this week. Encourage someone. Whether this is easy or not. It will bless someone. Even if things are going rough with you, you will not feel so isolated. Email me if something happens that is cool. Email me if things are so dark with you, that you seriously can't reach out...and I will make sure that YOU get the note that you desperately need!
Dark is dark, and a candle is SO MUCH LIGHTER, and someday, It Will Dawn. I promise.
HAPPY DAY OF ENCOURAGEMENT!!
I'll be honest, I probably would have run with it regardless...just because it is a really cool idea. I like it almost as much as the Victorian May Day, where they put flowers on people's doorsteps...the sweet equivalent of ringing the doorbell and running...I've always wanted to do that one...someday I will. It's on my bucket list. Seriously.
ANYWAY! As I've mentioned before, one of the primary goals of this blog was encouragement, the other being education. So, I'm going to run with it today.
The mind-blowing synopsis it this "You Are Not Alone!"
First and most importantly, God is a Loving Father (even if your earthly father wasn't, He Is!) And has promised, "I will never leave you or forsake you." In those specific words, twice in fact, in Deuteronomy and Hebrews. And in Psalm 34:4 David even gave a personal testimony that He "sought the Lord, and He answered me; He delivered me from all of my fears!"
Second of all, I have said before that parenting is not easy. I don't care if you have typical kids or kids with "stuff". It is NEVER goes according to what you had planned in your head before you got there. In fact, I am going to go one better, LIFE will not go the way you had planned. And, I'd just like to say, that is probably best. I am doing a Beth Moore Bible study of Esther and there is a phrase that is used in the Hebrew that sets up a story in a grand way that always "introduce impending catastrophe or doom". I dare you to pick a moment in the Bible where there is a catastrophe and where the final conclusion is not so amazing makes your idea of happily-ever-after look paltry.
Now, I'm hopefully far from the conclusion in my own life, but at every juncture where I seriously don't think I'll ever be able to lift my head from the weight, the mini-conclusions have me dancing more happily than I thought possible. Even over tiny stuff. I have a sneaking suspicion, it will only get better.
Our responsibility in this is to find people to help you with your burden and help them with theirs. If everyone's weight is lighter, AND you have a friend, then you have a mini-party right there!
I believe that we, as a society, and even more as a "Special Needs" community, tend to closet ourselves from each other when we struggle. When things are not okay we have difficulty reaching out.
Those whose life feels like it is imploding from pain and pressure don't want to reach out. We feel like it will take too much energy, that we don't have enough to spare. Those on the outside, who seem to be getting along pretty well, don't want to "interfere", "complicate", "rub their face in 'normal'", or "bother" those who desperately need the phone call, the visit, the cup of coffee, the written note, the prayer. This in turn causes those who are drowning to feel even more isolated and depressed, which makes the struggle even more exhausting.
Take it from me, even if you feel awkward, the phone call helps. Even if you write the same note as 10 other people and the same as you wrote last week, it is encouraging. I have an entire under-bed storage box of notes from when Elise was on Chemo. My kids will have to throw it out when I die, because I Cannot.throw.them.away. And I didn't have any idea who wrote more than half of them.
I dare you to reach out for someone this week. Encourage someone. Whether this is easy or not. It will bless someone. Even if things are going rough with you, you will not feel so isolated. Email me if something happens that is cool. Email me if things are so dark with you, that you seriously can't reach out...and I will make sure that YOU get the note that you desperately need!
Dark is dark, and a candle is SO MUCH LIGHTER, and someday, It Will Dawn. I promise.
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