“Now faith is the substance of things hoped for, the evidence of things not seen. For by it the elders obtained a good report. Through faith we understand that the worlds were framed by the word of God, so that things which are seen were not made of things which do appear....But without faith it is impossible to please him; for he that cometh to God must believe that He is, and that He is a rewarder of them that diligently seek Him.”
Hebrews 11:1-3, 6
Faith is a choice. No matter what the circumstances around me, no matter how anxiety attacks or panic will insist on messing with me, I can choose to trust.
There will always be things in this world that, because I am a finite being, i cannot see, know, and experience for myself. I have to take someone’s word for it. From the things that i have seen, i am convinced that the view of the world that makes the most logical sense comes through the word of God. And the only view of the world that gives an unshakable hope of redemption--a hope that is built on solid rock, not the shaky foundation of humanity--comes through the blood of Christ. We need a Savior; and, thank God, in Christ we have One.
It is one of those times when i am wrestling with the fine line between disobedience and disability.
My youngest son and his actions brought up the question in my mind. I am adjusting to a new mindset, trying to be understanding of what he is able to bring under control and what he is not. And...more often...trying to figure out if he is being naughty or if the problem behavior is part of his disability. Just because he has autism does not mean he does not possess a human nature. He has a sweetness and innocence typical of a child a few years younger than himself; but, like any other child, he also has the capacity for disobedience. So I do the best I can to balance understanding with discipline. Both are needed.
If anything, it is harder to do this, to find this balance, for myself.
Where is the line in the sand, where the gripping terror of a panic attack turns into the sin of giving in to fear? Where the anxiety attack, which comes out of the blue, turns into the sin of giving in to worry? When do I need to look inside to see if i am sinning; and when do i allow myself grace to not feel guilty over something beyond my control? ...knowing that i am doing the best i can to be courageous and that He who made me knows my mind and heart.
A few months ago, I wrote a post called “Thank God, He lives.“ One of the thoughts in there, rings true here, too.
“[It is a battle with an] unseen foe--because, of course, no one but me...[and God]...can see or know the fears that lay in wait for a time when I am weak. Those battles are fought within...
...There is glory and honor in fighting battles we can see. No one applauds, no one understands, when you fight the unseen demons simply to get another supper cooked, to finish washing another basket of clothes.”
...thank God He lives...and a thank you note...
But He sees and knows. Sometimes I realize that I am telling God, “I am sorry, so very sorry,” over something that I truly had no control over. Some bit of this illness that was just that--part of the illness. If someone breaks an ankle, is it imperative that they confess and repent of the pain of the broken bone? Do we say “only this much pain relief, and no more?” Do we ask such a one to pull himself up by his own bootstraps while keeping the broken ankle straight? I think not. Pain relief is given to ease the stress pain inflicts on the body, in order for it to relax and heal. So, too, in the pain of a mental illness, there is a time to use appropriate medications and therapy techniques; and to give grace and kindness rather than judgment to ourselves.
It’s been two years, now, since this all started. I am so grateful to be where I am. I can smile; I can laugh; I can take care of my family. My kids tell me they would rather have me than anybody else for a mom; my husband loves me very much and he too is glad to have his wife back from the unreachable place where i had been.
Some of the effects linger. I still do battle with jitters and anxiety on a fairly regular basis; and at times, panic attacks. For that reason, I have not been able to be completely free of the need for meds; although I have been able to cut back quite a bit. I still have a point where, suddenly, I am done. Whether it be in a crowd, within a setting of noisy children, or simply weariness, there are times when I suddenly need to leave to avoid the onset of a panic attack. Sometimes depression still rears its ugly head; and at those times, speech and other interaction with people is difficult. At those times, i often do only what is absolutely necessary; and my best just has to be good enough...because that is all i have to offer.
So, as before, I will choose to trust Him. I will choose to be of good courage, and allow myself grace for the times when i cannot will an illness away. The fact that I still do battle with this--though largely an unseen battle--is not evidence that He is not with me. Rather, the fact that I am really pretty functional--on most days i am able to care for my family instead of needing them to care for me--is evidence that His grace is sufficient for my every need, that His mercies are new every morning.
The end of Hebrews 11 tells of those who did great things here on earth, through faith in God; but the writer also tells of those who were faithful through great trials and tribulations, though they never saw the fruition of their hopes here on earth, “that they might obtain a better resurrection.”
What a wonderful thought--just because we don’t see it all here, and don’t understand it all here, does not mean He is not here. No matter the circumstances, He is always at work. Though our faith may falter at times, He is always faithful. When we choose to trust Him; He will hold us, and carry us through.
Tuesday, April 29, 2014
Tuesday, April 22, 2014
...the stuff of dreams...
The moon was almost full. The sky was that deep, midnight blue--bluer than blue. The stars were out. I could pick out Orion’s belt, but that would be about the extent of my astronomy knowledge. Lights from the neighbors’ houses twinkled across the fields and through the leafless trees. There was a bonfire in our once sturdy, but now crumbling, firepit. (i guess that will be a job for my hubby this summer...) In the glow of the flames and the shine of the moonlight, it was still beautiful, even the crumbling blocks. There was a Phillies game on the radio; the crackling of the microphone, the rise and fall of the noise in the stadium competed with the sounds of the peepers and the rustling of the woods at night. The trees were still bare, the night air was chilly, but it was the stuff of an enchanted moonlit wonderland. Was i still on the ground? I touched the solidness of the arm of the chair where i was sitting. How the stuff of dreams and the stuff of reality seem tangled together on a starlit night in spring.
**************************************************
I was asleep, but yet in my dream, so very...wide awake.
The stage was dark. The orchestra was warming up. I couldn’t see them, but I knew they were there. I was waiting, not quite sure what I was supposed to do. The director came to me.
“Are you ready?”
I looked down. I was wearing something silvery, light, beautiful. Not a costume. A costume is fake, something for a performance. This was more like a garment. The old Biblical King James word “raiment,” maybe. This lovely thing was not just for a performance; this was more real than anything i had ever worn before. I had never had anything like it, but somehow i knew it was made just for me.
Was I ready? I supposed so. But ready for what?
“You’re going to dance.” Dance? Oh, no. I don’t dance. I am the most awkward dancer you have ever seen. Nobody wants to see me dance. I have poor rhythm and two left feet. I never learned, and I am too painfully conscious of how awkward of a dancer I am to ever be good at it.
“Oh, no,” I told the director. “I can’t dance. You don’t want me to dance. Trust me, nobody in your audience wants to see me dance. I have no training, and I am the worst dancer you ever saw.”
“Oh, yes,” he countered. “You are perfect. I have been watching you for a long time. You are exactly what I need. Just listen to the music, and follow your partner.”
Partner? I didn’t know I had a partner, but now i see a faint shadow. He is there, although nearly hidden in the dimly lit backstage. Suddenly i am frightened; i am not ready after all, but the director turns back to the orchestra. The music swells, and I listen. Not just with my ears, but with my whole being.
The curtain is up.
I begin to dance. Haltingly, hesitatingly at first. The music is all around me, in me, down to my very bones. I follow my partner, who is a few steps ahead of me. I still can only see him dimly. But I know he is there, and he is not hard to follow. At times I take his hand, at times i am dancing in his shadow. I see no stage lights, just a beautiful purply-blue, like a summer night sky. Millions of stars--above me, below me, all around me. The light twinkling and glittering off my silver garment. I find my dancing feet. I feel the director’s smile on me.
And distantly, all around me, I hear something I never even once imagined. Applause. It begins softly at first, then, like the music, swells all around me. The curtain does not go down. I am dancing, on and on, into the velvet of the purply-blue midsummer’s night. The music carries me on its wings. It feels like flying. It is wonderful. I am still following my partner. He is never far away; I can just brush his hand with the tips of my fingers. I dance on into the night. The applause swells. The stars are still twinkling.
*************************************************
Who knows where dreams come from? Who can say that the most beautiful dream is not from Him who made the world? Do lovely dreams not come from the same place where one finds the soul of every beautiful story ever written? Each beautiful story that, after the last page is turned, leaves one with a feeling that, truly, someday, all shall be well.
“When she [Irene] opened her eyes, she saw nothing but a strange lovely blue over and beneath and all about her. The lady and the beautiful room had vanished from her sight, and she seemed utterly alone. But instead of being afraid, she felt more than happy--perfectly blissful. And from somewhere came the voice of the lady, singing a strange sweet song, of which she could distinguish every word; but of the sense she had only a feeling--no understanding. Nor could she remember a single line after it was gone. It vanished, like the poetry in a dream, as fast as it came. In after years, however, she would sometimes fancy that snatches of melody suddenly rising in her brain must be little phrases and fragments of the air of that song; and the very fancy would make her happier, and abler to do her duty.”
--George MacDonald, from The Princess and the Goblin
After the last page is turned, after the last earthly light has gone out--will we dance on, out into the purply-blue starlight? Always following our partner? On beyond the stage, always under the smile of the Director, always dancing to His music? Will we find that it was not a beautiful dream, but only the beginning of a reality more real, and more beautiful than we can imagine?
And the strange, sweet song of the dream still lingers; the wonder of the dance that was so much like flying, the unexpected swell of applause, the touch of the dancer that i followed, and above all, the warmth of the director‘s smile. And the thought of it makes me happier, and stronger for the tasks before me.
**************************************************
I was asleep, but yet in my dream, so very...wide awake.
The stage was dark. The orchestra was warming up. I couldn’t see them, but I knew they were there. I was waiting, not quite sure what I was supposed to do. The director came to me.
“Are you ready?”
I looked down. I was wearing something silvery, light, beautiful. Not a costume. A costume is fake, something for a performance. This was more like a garment. The old Biblical King James word “raiment,” maybe. This lovely thing was not just for a performance; this was more real than anything i had ever worn before. I had never had anything like it, but somehow i knew it was made just for me.
Was I ready? I supposed so. But ready for what?
“You’re going to dance.” Dance? Oh, no. I don’t dance. I am the most awkward dancer you have ever seen. Nobody wants to see me dance. I have poor rhythm and two left feet. I never learned, and I am too painfully conscious of how awkward of a dancer I am to ever be good at it.
“Oh, no,” I told the director. “I can’t dance. You don’t want me to dance. Trust me, nobody in your audience wants to see me dance. I have no training, and I am the worst dancer you ever saw.”
“Oh, yes,” he countered. “You are perfect. I have been watching you for a long time. You are exactly what I need. Just listen to the music, and follow your partner.”
Partner? I didn’t know I had a partner, but now i see a faint shadow. He is there, although nearly hidden in the dimly lit backstage. Suddenly i am frightened; i am not ready after all, but the director turns back to the orchestra. The music swells, and I listen. Not just with my ears, but with my whole being.
The curtain is up.
I begin to dance. Haltingly, hesitatingly at first. The music is all around me, in me, down to my very bones. I follow my partner, who is a few steps ahead of me. I still can only see him dimly. But I know he is there, and he is not hard to follow. At times I take his hand, at times i am dancing in his shadow. I see no stage lights, just a beautiful purply-blue, like a summer night sky. Millions of stars--above me, below me, all around me. The light twinkling and glittering off my silver garment. I find my dancing feet. I feel the director’s smile on me.
And distantly, all around me, I hear something I never even once imagined. Applause. It begins softly at first, then, like the music, swells all around me. The curtain does not go down. I am dancing, on and on, into the velvet of the purply-blue midsummer’s night. The music carries me on its wings. It feels like flying. It is wonderful. I am still following my partner. He is never far away; I can just brush his hand with the tips of my fingers. I dance on into the night. The applause swells. The stars are still twinkling.
*************************************************
Who knows where dreams come from? Who can say that the most beautiful dream is not from Him who made the world? Do lovely dreams not come from the same place where one finds the soul of every beautiful story ever written? Each beautiful story that, after the last page is turned, leaves one with a feeling that, truly, someday, all shall be well.
“When she [Irene] opened her eyes, she saw nothing but a strange lovely blue over and beneath and all about her. The lady and the beautiful room had vanished from her sight, and she seemed utterly alone. But instead of being afraid, she felt more than happy--perfectly blissful. And from somewhere came the voice of the lady, singing a strange sweet song, of which she could distinguish every word; but of the sense she had only a feeling--no understanding. Nor could she remember a single line after it was gone. It vanished, like the poetry in a dream, as fast as it came. In after years, however, she would sometimes fancy that snatches of melody suddenly rising in her brain must be little phrases and fragments of the air of that song; and the very fancy would make her happier, and abler to do her duty.”
--George MacDonald, from The Princess and the Goblin
After the last page is turned, after the last earthly light has gone out--will we dance on, out into the purply-blue starlight? Always following our partner? On beyond the stage, always under the smile of the Director, always dancing to His music? Will we find that it was not a beautiful dream, but only the beginning of a reality more real, and more beautiful than we can imagine?
And the strange, sweet song of the dream still lingers; the wonder of the dance that was so much like flying, the unexpected swell of applause, the touch of the dancer that i followed, and above all, the warmth of the director‘s smile. And the thought of it makes me happier, and stronger for the tasks before me.
Sunday, April 20, 2014
...thank God, we have a Savior...
Today i share a poem and story from Amy Carmichael's book, "Rose from Brier."
"...We need a friend, and above all a Savior, in the depths of our being--and, thank God, we have one." --Lady Victoria Buxton
How very thankful I am for this, today especially as we remember His death and resurrection. If He were not our risen Savior, what hope would there be? Thank God, He lives.
The following is taken directly from "Rose From Brier, a portion of the chapter titled, "As We Have Borne."
Do we not hear Thy footfall, O Beloved,
Among the stars on many a moonless night?
Do we not catch the whisper of Thy coming
On winds of dawn, and often in the light
Of noontide and of sunset almost see Thee
Look up through shining air
And long to see Thee O Beloved, long to see Thee
And wonder that Thou art not standing there?
And we shall hear Thy footfall, O Beloved,
And starry ways will open, and the night
Will call her candles from their distant stations
And winds shall sing Thee, noon, and mingled light
Of rose-red evening thrill with lovely welcome;
And we, caught up in air,
Shall see Thee, O Beloved, we shall see Thee,
In hush of adoration see Thee there.
Among the stars on many a moonless night?
Do we not catch the whisper of Thy coming
On winds of dawn, and often in the light
Of noontide and of sunset almost see Thee
Look up through shining air
And long to see Thee O Beloved, long to see Thee
And wonder that Thou art not standing there?
And we shall hear Thy footfall, O Beloved,
And starry ways will open, and the night
Will call her candles from their distant stations
And winds shall sing Thee, noon, and mingled light
Of rose-red evening thrill with lovely welcome;
And we, caught up in air,
Shall see Thee, O Beloved, we shall see Thee,
In hush of adoration see Thee there.
...And till that good time comes? There is one thing we can always do. We can find the incense trees that grow in our hottest places. We can offer Him our hearts' adoration.
Among the joys of these months have been the books sent by friends...the first of this company of book-friends was the gallant and beautiful Lady Victoria Buxton. She found her incense trees.
She was struck down suddenly, a lovely young wife and mother, in February 1869, and held fast by "searching and exhausting pain" till July 1916. Forty seven years of pain. And yet her life was one of valorous patience, forgetfulness of self, service to others; and such a sense of light was about her that after she had passed a daughter could write:
"Was she helpless, always in pain, bound wearily to couch and chair? If it was so, it is not suffering and sadness that speak of her. Rather it is the beauty of sunshine and roses, the shimmer on the river, the blue haze on the summer sea. These things speak of her, not those others."
And a friend wrote:
"An hour spent in her quiet sitting-room was enough to give one an entirely new view of illness and its possibilities. There were, indeed, the outward signs of an invalid's condition--the "prone-couch," the sofa, the walking sticks always at hand, the little meal brought in on a tray at 5 o'clock. There were visible in the worn face and attenuated frame--even more touchingly in the fading eyes--the unmistakable evidences of long continued suffering. But all this was only, as it were, the setting of the picture--the central figure was a spiritual presence, which bodily pain and lassitude were powerless to affect."
But hers was not a cheaply won victory of spirit over flesh. This is from her private papers:
"Things do not improve, and use is not a "second nature," and all seems increasingly hard sometimes, and I am rather hopeless of getting better...What should I do without Him, in life or death? The inner loneliness would be awful, in spite of all that human affection could do for me. We need a friend, above all a Savior, in the depths of our being--and thank God, we have one."
And so she loved, served, shone, was more than conqueror. And fortified and comforted for those forty seven years, a very St. John in her day and generation, she gave to all who saw her an entirely new view of sickness and its possibilities.
Sunday, April 13, 2014
...the gift is no less precious...
It's been the week of the second round of the stomach bug for the year. It has been going around through school, church, and the community this winter; and I counted us lucky to have escaped with only one episode of it, back around Christmastime. However, this week, my littlest guy and I came down with a vicious bout of what he unceremoniously (and quite accurately) referred to as "the puke-ups." He earned an early morning trip to the emergency room with him after he had been vomiting most of the night and my husband and I became concerned about him possibly being dangerously dehydrated. We spent a few hours in the ER and came home with medication to calm the "puke-ups." By mid-morning, he was finally resting comfortably; and I frantically cleaned up the bathroom and his mattress; and washed bedding and unlucky articles of clothing that had happened to be in the line of fire. It seemed, as I worked, that speed was of the essence. i had an uneasy feeling in my stomach which turned out to be very accurate. By afternoon, I was not feeling spectacular, and by evening, the kids were asking me if I needed a bucket. They are not used to mom making a beeline for the bathroom with her hands clamped over her mouth. Blehh. It was not a good night. I kept thinking, "My poor little boy. No wonder he was so miserable." I spent the next day laying as still as possible in bed, with the window open beside me, for lots of cold fresh air to do away with any possible smell of food from downstairs (where my husband was nobly picking up my slack and doing dreaded things like cooking). The open window and the laying as still as possible were necessary to avoid more mad dashes for the bathroom with my hands clamped over my mouth. (At one point my husband unhelpfully suggested that he might barbeque some chicken under my window. It sounded like some highly refined torture technique at the time. Said chicken aroma fortunately never materialized.)
But finally, the next afternoon, I began to feel slightly like a human being again; by evening, I had finished a few chapters of the book i was reading, as well as checked email and caught up on some blogs I have recently discovered. It was good to be back in the land of the living.
One post i was reading especially jumped off the screen at me. We do not have other friends with autistic children whose behaviors are similar to my son's. So I am used to seeing first and foremost the differences between my youngest son and other children; as I read this blog post it was just pretty awesome to read something and think, "hey, you're describing my kid, too!" The author's autistic son is most likely more severely handicapped than mine; but the similarities are there too. When she described the love she saw in her son, I realized that i have seen the same love in my son's eyes. Sometimes--many times--it is when he looks at me; sometimes it is when he gazes on the face of someone else he has fallen in love with. He has an almost uncanny ability to recognize a kindred spirit instantly. My son, also, will grab my face at times and turn it toward his, giving me hugs and kisses out of the blue.
I am moving from grieving over the reality of my little guy's limitations to looking at him with new eyes. Yes, the autism still is what it is, but it is sweet to read what other parents of special needs children have to say and realize that my son's autistic behaviors, which may sometimes seem annoying or a matter for impatience, can also be what God uses to help us see Him more clearly. See the link below to the post, titled "Angels Unaware," from the blog Special Needs Parenting.
The day I was sick--after my little guy was beginning to feel better--at one point, he came up to my bed to "tuck me in." After pulling my covers up around me, he said, "Just a minute. I have one more thing." He bowed his head and asked Jesus to please make his Princess Toadstool feel better, amen. How can I miss the love wrapped around me here?
Special Needs Parenting--Angels Unaware
One quote from the post reminded me especially of my boy...
"How often do we miss out on the gifts people with disabilities bring just because they come gift-wrapped in a different kind of package? Because we are uncomfortable holding their gaze?" --Kathleen Bolduc
Sometimes I see someone draw back from my son's gaze. At times it's another child, or children, who do not realize how much my son wants to play with them; and how he does not understand that they might not share his fascination with volcanoes. It hurts him that he has been called "odd," or "creepy." He is neither. He is his own man, in his own little world. At times it's an adult who may brush off his interests--"oh, we don't have a wii, my kids play outside!" My son plays outside too, but the invitation he just extended, to hear about his beloved SuperMario Brothers game, was an invitation to enter his world, not to judge his mama for letting him play video games. At times it is someone who stares as he be-bops around a room humming to himself; in constant motion for the time being, just totally unable to sit or stand still that day. That person, drawing back from his gaze, usually gives me "the look." I have not yet learned to interpret "the look." Is it pity? Criticism? Curiosity? Maybe all three, or something i have not yet figured out.
I can understand some of the reactions. People don't always know the whole story, and all they have to go on is what they see. Probably, sometimes, i do look like an annoying mom with an unruly child. i am far from the perfect person. i am far from the perfect parent, to any of my kids. One thing that bothers me are all the times, before i realized what i was dealing with, when i've brushed off, or tried to curb, my little guy's fixations. For that matter, I can think of a lot of ways i've failed all three of my children at times. I have done my best to apologize and make things right with my kids when i have been wrong. And they still love me and tell me they are glad i am their mom. So, since i have received grace, I need to figure out how to handle other people's less-than-kind reactions gracefully and tactfully. Probably one of those things that comes with time and practice.
I guess not everyone will understand. I will have to learn to be okay with that. Jesus said, "Father, forgive them, for they know not what they do," while He was being nailed to the cross. So i am confident that He will help me to figure out how to get past the frustration with those who don't, or won't, understand.
But for everyone who doesn't understand, or who offers judgmental or condescending looks or comments, there are those who embrace my son--and our whole family, for that matter--and love us for who we are. Our family--on my husband's and my side--who have never even hinted at rejecting my son, no matter what his needs. My friend from church and her family who have invited us over, many Sunday afternoons, so that our kids could play together. Another friend from church who saved a video of jellyfish on her phone for over a year, because she remembered that my little guy was fascinated with it. My husband's coworkers who have hosted us at their home and have also made the long drive to visit ours; they always make me feel welcomed and at home with them. The moms and dads and grandparents of the other kids on my older children's baseball and football teams--my older kids have been cheered on, and my youngest welcomed with open arms, at practices and games.
As I have written my blog entries about depression, I have pondered the question of whether or not I would appreciate the good days if it were not for the hard ones. I found myself wondering if anyone who had not endured the darkness could truly be grateful for the light. Now it is beginning to dawn on me that, with autism come gifts I had no idea of, before; and again a whole new window of gratitude is opened for me. The gift wrapping might be different, but the gift is no less precious.
But finally, the next afternoon, I began to feel slightly like a human being again; by evening, I had finished a few chapters of the book i was reading, as well as checked email and caught up on some blogs I have recently discovered. It was good to be back in the land of the living.
One post i was reading especially jumped off the screen at me. We do not have other friends with autistic children whose behaviors are similar to my son's. So I am used to seeing first and foremost the differences between my youngest son and other children; as I read this blog post it was just pretty awesome to read something and think, "hey, you're describing my kid, too!" The author's autistic son is most likely more severely handicapped than mine; but the similarities are there too. When she described the love she saw in her son, I realized that i have seen the same love in my son's eyes. Sometimes--many times--it is when he looks at me; sometimes it is when he gazes on the face of someone else he has fallen in love with. He has an almost uncanny ability to recognize a kindred spirit instantly. My son, also, will grab my face at times and turn it toward his, giving me hugs and kisses out of the blue.
I am moving from grieving over the reality of my little guy's limitations to looking at him with new eyes. Yes, the autism still is what it is, but it is sweet to read what other parents of special needs children have to say and realize that my son's autistic behaviors, which may sometimes seem annoying or a matter for impatience, can also be what God uses to help us see Him more clearly. See the link below to the post, titled "Angels Unaware," from the blog Special Needs Parenting.
The day I was sick--after my little guy was beginning to feel better--at one point, he came up to my bed to "tuck me in." After pulling my covers up around me, he said, "Just a minute. I have one more thing." He bowed his head and asked Jesus to please make his Princess Toadstool feel better, amen. How can I miss the love wrapped around me here?
Special Needs Parenting--Angels Unaware
One quote from the post reminded me especially of my boy...
"How often do we miss out on the gifts people with disabilities bring just because they come gift-wrapped in a different kind of package? Because we are uncomfortable holding their gaze?" --Kathleen Bolduc
Sometimes I see someone draw back from my son's gaze. At times it's another child, or children, who do not realize how much my son wants to play with them; and how he does not understand that they might not share his fascination with volcanoes. It hurts him that he has been called "odd," or "creepy." He is neither. He is his own man, in his own little world. At times it's an adult who may brush off his interests--"oh, we don't have a wii, my kids play outside!" My son plays outside too, but the invitation he just extended, to hear about his beloved SuperMario Brothers game, was an invitation to enter his world, not to judge his mama for letting him play video games. At times it is someone who stares as he be-bops around a room humming to himself; in constant motion for the time being, just totally unable to sit or stand still that day. That person, drawing back from his gaze, usually gives me "the look." I have not yet learned to interpret "the look." Is it pity? Criticism? Curiosity? Maybe all three, or something i have not yet figured out.
I can understand some of the reactions. People don't always know the whole story, and all they have to go on is what they see. Probably, sometimes, i do look like an annoying mom with an unruly child. i am far from the perfect person. i am far from the perfect parent, to any of my kids. One thing that bothers me are all the times, before i realized what i was dealing with, when i've brushed off, or tried to curb, my little guy's fixations. For that matter, I can think of a lot of ways i've failed all three of my children at times. I have done my best to apologize and make things right with my kids when i have been wrong. And they still love me and tell me they are glad i am their mom. So, since i have received grace, I need to figure out how to handle other people's less-than-kind reactions gracefully and tactfully. Probably one of those things that comes with time and practice.
I guess not everyone will understand. I will have to learn to be okay with that. Jesus said, "Father, forgive them, for they know not what they do," while He was being nailed to the cross. So i am confident that He will help me to figure out how to get past the frustration with those who don't, or won't, understand.
But for everyone who doesn't understand, or who offers judgmental or condescending looks or comments, there are those who embrace my son--and our whole family, for that matter--and love us for who we are. Our family--on my husband's and my side--who have never even hinted at rejecting my son, no matter what his needs. My friend from church and her family who have invited us over, many Sunday afternoons, so that our kids could play together. Another friend from church who saved a video of jellyfish on her phone for over a year, because she remembered that my little guy was fascinated with it. My husband's coworkers who have hosted us at their home and have also made the long drive to visit ours; they always make me feel welcomed and at home with them. The moms and dads and grandparents of the other kids on my older children's baseball and football teams--my older kids have been cheered on, and my youngest welcomed with open arms, at practices and games.
As I have written my blog entries about depression, I have pondered the question of whether or not I would appreciate the good days if it were not for the hard ones. I found myself wondering if anyone who had not endured the darkness could truly be grateful for the light. Now it is beginning to dawn on me that, with autism come gifts I had no idea of, before; and again a whole new window of gratitude is opened for me. The gift wrapping might be different, but the gift is no less precious.
Friday, April 4, 2014
...the exactly right boy...
I am sitting at the desk in the living room with a pile of papers in front of me. Orchestral music of the 1940’s and 50’s accompanying the slapstick comedy of Tom and Jerry cartoons in the background. A little boy gleefully giggling at the slapstick moments and repeatedly rewinding to watch the moment of impact until reminded to put down the remote. The papers, ehh--those i need to file, but I’m not sure where to put them. I’m going to need them to be easily accessible for a while yet.
This should not be a matter for sadness, I have been telling myself. If anything, I should be relieved. It could be so much worse, and it isn’t. I have suspected for some time; I have asked questions of people who have experience with similar situations; I have kept family and close friends updated with how matters stood. The 10 page report is just a confirmation of what I have known, just with more specifics.
But sitting there in black and white, ten pages of it, in front of me, is the document that leaves no doubt that my little guy has autism. No more saying or thinking, “maybe he does, we are looking into testing;” or “well, he might, but we are not sure.” This is it; there is no going back from here. Just forward.
As I have spoken with family, friends, and professionals in search of insight into how to best help my little boy, people have been saying things like, “fortunately, it looks like he will be high functioning.” And, “It could be much worse.” They are not incorrect. He is on the high-functioning end of the autism spectrum, and for that I am thankful. Yes, absolutely, it could be much worse.
In a way, it is a relief to know for sure. Now we do know where we stand and can decide what would be best to do for him. But ever since that report hit my hands, strangely enough, I am fighting grief.
It is as if I had been holding out hope, in the back of my mind, that maybe things would be different. I never let my brain put it into an actual thought. Reality stared me in the face every day, so I am not even sure what I hoped for. Maybe I was hoping that, by a certain age (which age, I am not sure), I would wake up and realize that he had slipped seamlessly into his peer group. Maybe one day I would wake up and realize that he no longer exhibited the autistic behaviors anymore, that it was all a passing phase and he was just a little slow to grow out of it. Maybe one day, I would wake up to find that he had become able to function normally from day to day, instead of needing to be led by the hand or constantly supervised through many things that my older two children were capable of accomplishing independently by this age.
But it isn’t different. This is what is, and now we play the hand that has been dealt. It will not go away. He will change and grow with time; we have been given much encouragement that, with time and therapy, he will be able to become a very functional adult member of society. For that I am truly thankful. But the reality is that there will be a long, probably sometimes weary, road to travel between here and there. i will need to adjust my expectations. Things will not be the same as with our oldest two children. No amount of wishing or denying will change that.
When I was expecting him, I did not want to find out via ultrasound whether he would be a boy or girl, preferring (at least on my part) to be surprised on the day he was born. We lovingly called him “Dudley” and my older son and daughter argued about whether we were having a “boy Dudley” or a “girl Dudley.” My son wanted a little brother; my daughter was voting for a baby sister. One day, after a particularly spirited argument on the topic, I exasperatedly told my daughter (who was hollering the loudest) that God would give us the “exactly right baby for our family.” It took the wind out of their little sails and diffused the tension that had been mounting. (It wasn’t like we ultimately had any say in the matter anyway, but it was hard to get that point across to the kids.) I thought then that God had given me that answer at the exactly right time, to settle my argumentative children. Now I am thinking He gave me that answer for such a time as this, too. He did give us the exactly right baby for our family, and He will give us what we need to care for him.
But for now, I will grieve the loss of some of my hopes. Childhood years with my little guy have not been, so far, and will not be, what I was expecting. I guess it is ok to be a little sad about it--though it could be worse, something has still been lost. I guess too it is ok to be exhausted--because some days are exhausting.
But...some of his dear little quirks are some of the best parts of him. He is such a funny kid--all kids have their moments, but my husband and I have had more than one conversation about how he has been the funniest of all three of our children. There is such an endearing sweetness and innocence about him. He loves to ask people what their names, ages, and birthdays are--and cannot figure out why a lady would not want to tell him her age. Once he knows her birthday, he doesn’t usually forget it. The boy can be--and often is--the picture of sweetness and charm. He is almost always ready with a smile, a song (usually from one of the Super Mario Brothers video games), and a bunch of facts about volcanoes for our listening pleasure. He seems to have a special rapport with my niece, who has Down’s Syndrome; they laugh and giggle at each other’s silliness, and sometimes at jokes between the two of them that the rest of us don’t quite understand. He brings much joy to our lives.
So even though i am kind of sad, there are many things to be glad about. I love him dearly; and, regardless of the challenges, I wouldn’t change anything, even if I could. God gave us the exactly right boy for our family.
This should not be a matter for sadness, I have been telling myself. If anything, I should be relieved. It could be so much worse, and it isn’t. I have suspected for some time; I have asked questions of people who have experience with similar situations; I have kept family and close friends updated with how matters stood. The 10 page report is just a confirmation of what I have known, just with more specifics.
But sitting there in black and white, ten pages of it, in front of me, is the document that leaves no doubt that my little guy has autism. No more saying or thinking, “maybe he does, we are looking into testing;” or “well, he might, but we are not sure.” This is it; there is no going back from here. Just forward.
As I have spoken with family, friends, and professionals in search of insight into how to best help my little boy, people have been saying things like, “fortunately, it looks like he will be high functioning.” And, “It could be much worse.” They are not incorrect. He is on the high-functioning end of the autism spectrum, and for that I am thankful. Yes, absolutely, it could be much worse.
In a way, it is a relief to know for sure. Now we do know where we stand and can decide what would be best to do for him. But ever since that report hit my hands, strangely enough, I am fighting grief.
It is as if I had been holding out hope, in the back of my mind, that maybe things would be different. I never let my brain put it into an actual thought. Reality stared me in the face every day, so I am not even sure what I hoped for. Maybe I was hoping that, by a certain age (which age, I am not sure), I would wake up and realize that he had slipped seamlessly into his peer group. Maybe one day I would wake up and realize that he no longer exhibited the autistic behaviors anymore, that it was all a passing phase and he was just a little slow to grow out of it. Maybe one day, I would wake up to find that he had become able to function normally from day to day, instead of needing to be led by the hand or constantly supervised through many things that my older two children were capable of accomplishing independently by this age.
But it isn’t different. This is what is, and now we play the hand that has been dealt. It will not go away. He will change and grow with time; we have been given much encouragement that, with time and therapy, he will be able to become a very functional adult member of society. For that I am truly thankful. But the reality is that there will be a long, probably sometimes weary, road to travel between here and there. i will need to adjust my expectations. Things will not be the same as with our oldest two children. No amount of wishing or denying will change that.
When I was expecting him, I did not want to find out via ultrasound whether he would be a boy or girl, preferring (at least on my part) to be surprised on the day he was born. We lovingly called him “Dudley” and my older son and daughter argued about whether we were having a “boy Dudley” or a “girl Dudley.” My son wanted a little brother; my daughter was voting for a baby sister. One day, after a particularly spirited argument on the topic, I exasperatedly told my daughter (who was hollering the loudest) that God would give us the “exactly right baby for our family.” It took the wind out of their little sails and diffused the tension that had been mounting. (It wasn’t like we ultimately had any say in the matter anyway, but it was hard to get that point across to the kids.) I thought then that God had given me that answer at the exactly right time, to settle my argumentative children. Now I am thinking He gave me that answer for such a time as this, too. He did give us the exactly right baby for our family, and He will give us what we need to care for him.
But for now, I will grieve the loss of some of my hopes. Childhood years with my little guy have not been, so far, and will not be, what I was expecting. I guess it is ok to be a little sad about it--though it could be worse, something has still been lost. I guess too it is ok to be exhausted--because some days are exhausting.
But...some of his dear little quirks are some of the best parts of him. He is such a funny kid--all kids have their moments, but my husband and I have had more than one conversation about how he has been the funniest of all three of our children. There is such an endearing sweetness and innocence about him. He loves to ask people what their names, ages, and birthdays are--and cannot figure out why a lady would not want to tell him her age. Once he knows her birthday, he doesn’t usually forget it. The boy can be--and often is--the picture of sweetness and charm. He is almost always ready with a smile, a song (usually from one of the Super Mario Brothers video games), and a bunch of facts about volcanoes for our listening pleasure. He seems to have a special rapport with my niece, who has Down’s Syndrome; they laugh and giggle at each other’s silliness, and sometimes at jokes between the two of them that the rest of us don’t quite understand. He brings much joy to our lives.
So even though i am kind of sad, there are many things to be glad about. I love him dearly; and, regardless of the challenges, I wouldn’t change anything, even if I could. God gave us the exactly right boy for our family.
Thursday, April 3, 2014
...no anxiety in heaven...
Revelation 21:4-5
“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.
And He that sat upon the throne said, Behold, I make all things new. And He said unto me, Write; for these words are true and faithful.”
There will be no anxiety in heaven. No anxiety. This one thought dropped into my head, from out of the blue, and kept running through my mind throughout the day like the refrain of a beautiful song. I suppose I had always known this. But I had never really thought about what it will mean for me.
When I wake up in heaven, no matter how I go to sleep here on earth, I will not wake up with a sense of impending doom and a shaky feeling in my legs. No frightening dreams--they will be gone forever. The beauty and wonder all around me will be the stuff that beautiful dreams dream of, and wish that they could be.
There will be no nameless fear and dread. No fear and dread of anything that does have a name, either. I will not have to wait for a pill to take effect before I can calmly face my day. When i wake up in that heavenly morning, all darkness and fear will be gone in the face of endless day.
And I will look on the face of Jesus. All the pain I have hoped to find rest from, all the emptiness and sadness that I have looked to fill--sometimes putting a burden on those around me that they could never carry...all the burdens will be lifted; all of the emptiness will be filled; all the pain will be washed away in the light of His presence. Because He is the One I have been searching for, all along.
“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.
And He that sat upon the throne said, Behold, I make all things new. And He said unto me, Write; for these words are true and faithful.”
There will be no anxiety in heaven. No anxiety. This one thought dropped into my head, from out of the blue, and kept running through my mind throughout the day like the refrain of a beautiful song. I suppose I had always known this. But I had never really thought about what it will mean for me.
When I wake up in heaven, no matter how I go to sleep here on earth, I will not wake up with a sense of impending doom and a shaky feeling in my legs. No frightening dreams--they will be gone forever. The beauty and wonder all around me will be the stuff that beautiful dreams dream of, and wish that they could be.
There will be no nameless fear and dread. No fear and dread of anything that does have a name, either. I will not have to wait for a pill to take effect before I can calmly face my day. When i wake up in that heavenly morning, all darkness and fear will be gone in the face of endless day.
And I will look on the face of Jesus. All the pain I have hoped to find rest from, all the emptiness and sadness that I have looked to fill--sometimes putting a burden on those around me that they could never carry...all the burdens will be lifted; all of the emptiness will be filled; all the pain will be washed away in the light of His presence. Because He is the One I have been searching for, all along.
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