I'm copying this post today from my favorite Down Syndrome Parent's Forum:
As far as I can tell, below is my first post on Downsyn, in July, 2000.
*****
There is not a lot more that I can add to the tremendous amount of wisdom already posted in these preceding messages. Only to add that it seems to me that you are doing the right things - first, seeking the best for your child's health. Second, you are taking the courageous step of seeking information and help for what you are feeling. My advice to you is to read and re-read these messages for the faith, hope, comfort and courage that you will find in and around the words written. Faith and trust start with you.My daughter will be one year old this week. We did not know that she had DS until her birth. I have turned over and over in my mind what it would have been like to have had months to think about her with DS before she was actually present, and I honestly can't say if it would have been better or not. In the first hours and days of her life, I actually wished that her medical problems would take her life, and that we could be the brave parents experiencing a terrible loss, and then move on. The reality is that we lost the daughter that we wanted - she never existed. Yesterday, I arrived home from work to find Emma asleep in her crib. She slept through our dinner until nearly 8 o'clock. I was angry because I didn't get to spend hardly any time with her. In the midst of all of the things that worry, frighten, annoy, and grieve me, the best part of my life is when I get to hold and play with both of my kids. Emma's smile can melt the coldest steel. Sitting in my chair with her asleep on my chest brings me the greatest sense of peace and contentment that I have ever known. This message is getting long -- I am having to develop attributes that I never wanted to have - but I am a better person as a result.I have to address life quality issues at every turn - but I have become a source of strength and courage for others.My heart is broken - but it is through this that I am learning what really matters.Life is a gift - Love takes courage - God will bless your efforts if you trust him to.That's enough for me for one day.
*****
Today is Emma’s sixth birthday. A lot has changed, and yet nothing has changed at all. Some things are not as clear to me as they seemed then, to be honest, seeing my own words prompts me to seek some of the strength I’ve been denying myself due to self-pity, lately.
My children are still my greatest source of strength. Emma was in asleep my lap, last night, and I just waited a little while before carrying her to bed (no small task, these days). She’s not so innocent, anymore; she’s a formidable presence in this world. We’re all struggling with getting her to new levels of communication and behavior; our (hers and ours) hardest work right now is to try, not to revert to what’s worked in the past. I am so proud of my son, Samuel. His compassion, watchfulness, and patience with all of us – I try desperately to not take for granted.
There are no adequate words for me to express my admiration for Vicky. She bears the brunt of the daily grind, the chasing, the doctors, the medicine, the bills, the angry guy that comes home every afternoon, the laundry, and the myriad of other things that don’t immediately come to mind. She’s an amazing Mom. She doesn’t let up. I don’t know how she does it.
So, the party’s on Saturday, there’ll be pictures, maybe an annual cake-video.
It’s appropriate that my first post began by acknowledging others here, some have gone on, some remain. I want to end this one the same way. You folks inspire, challenge, and make this world a better place, day by day, diaper by diaper, sign by sign. Some of you now move entire communities, having never thought yourselves capable of such things. One of the things I realized, that Dan Rather got booed for, and we just don’t talk about enough, is the need for courage. I find courage here, every day.
Thank you.
Thursday, July 21, 2005
Monday, July 18, 2005
Charlie and the Chocolate Factory
Had the special joy of going to the cinema for the second Sunday in a row, to the same mall where the Parking Structure elevator is still not working, meaning I get to bump the stroller down three flights of stairs again. But back to our movie.
Johnny Depp, once again succeeds in portraying a creep. Imagery and cgi wonders abound. Our hero lives in a completely unique hovel amidst rows and rows of moribund row houses. His other four competitors are so caricatured at the beginning that there is absolutely no suspense as to the outcome, even for someone like me who was completely unfamiliar with the story. Christopher Lee is perfect in his role as Father of the Creep. Oompah-Loompahs bring much-needed levity and music, as do a roomful of squirrels possessing a collective wisdom far beyond that of their owner. The fat kid's face looks like a baby's butt, it's so rotund and translucent, his blue eyes would have made any fuhrer proud. Major props also to the look of absolute focus on the face of Violet's mom. They should have been from Dallas, not Florida.The scene where candy gets teleported by TV, but gets smaller, wasn't too well thought out, either. Everybody knows that the camera adds ten pounds. I guess in the world of fantasy, anything can happen.
Oh, one other thing. I guess, in today's PG, PC world, it's o.k. to use the word "retard" (as uttered by the totally unlikeable video-game playing techno-nerd kid), but not "bastard" (you'll have to watch the movie). They both describe wrinkles in the human condition, shouldn't they get equal weight? After watching videos in the "Back to the Future" series with my kids, recently, this movie was stellar in terms of language, if not in respect for "diversity".More importantly, the kids loved it. It was serendipitous that my son and I had just concluded watching "2001: A Space Odyssey" the day before, it made one of the "in-jokes" pretty funny for him. The air conditioning was working fine, and I almost got a nap in the middle of it. The Squrrels woke me up.
Johnny Depp, once again succeeds in portraying a creep. Imagery and cgi wonders abound. Our hero lives in a completely unique hovel amidst rows and rows of moribund row houses. His other four competitors are so caricatured at the beginning that there is absolutely no suspense as to the outcome, even for someone like me who was completely unfamiliar with the story. Christopher Lee is perfect in his role as Father of the Creep. Oompah-Loompahs bring much-needed levity and music, as do a roomful of squirrels possessing a collective wisdom far beyond that of their owner. The fat kid's face looks like a baby's butt, it's so rotund and translucent, his blue eyes would have made any fuhrer proud. Major props also to the look of absolute focus on the face of Violet's mom. They should have been from Dallas, not Florida.The scene where candy gets teleported by TV, but gets smaller, wasn't too well thought out, either. Everybody knows that the camera adds ten pounds. I guess in the world of fantasy, anything can happen.
Oh, one other thing. I guess, in today's PG, PC world, it's o.k. to use the word "retard" (as uttered by the totally unlikeable video-game playing techno-nerd kid), but not "bastard" (you'll have to watch the movie). They both describe wrinkles in the human condition, shouldn't they get equal weight? After watching videos in the "Back to the Future" series with my kids, recently, this movie was stellar in terms of language, if not in respect for "diversity".More importantly, the kids loved it. It was serendipitous that my son and I had just concluded watching "2001: A Space Odyssey" the day before, it made one of the "in-jokes" pretty funny for him. The air conditioning was working fine, and I almost got a nap in the middle of it. The Squrrels woke me up.
Monday, July 11, 2005
Fantastic 4 falls flat
I won't compete with Roger Ebert on this one - he says what's on my mind in this review. I had read, and agree that this is a movie best suited for 10 year-olds. I agree, just be sure and bring their game-boys along, so they can keep themselves occupied while the utterly idiotic, boring dialogue runs out. Sam put up the arm rests and laid down for a while during this movie - he should have been drawn in and kept interested. It was nice to see Michael Chiklis on the big screen - his eyes peering through his dirt-colored rubber suit do more acting than most of the combined cast of this turd. Blurry cgi effects only cement the feeling that it's not going to get any better before the film runs out. Emma signed twice to mom that she wanted to go potty, turns out she was really just commenting on the movie.
Thursday, July 07, 2005
London 07/07/05
Dear Friends,
I personally share your shock, sorrow, and anger at this cowardly exhibit by those who seem intent upon their own destruction. Just as we will never forget 9/11, we remember and celebrate the resilience and resolve of Londoners through history in the face of tyranny and terror. My sincere desire is that these perpetrators are rounded up and at least removed from free society, where they enjoy what they seek to destroy.
I personally share your shock, sorrow, and anger at this cowardly exhibit by those who seem intent upon their own destruction. Just as we will never forget 9/11, we remember and celebrate the resilience and resolve of Londoners through history in the face of tyranny and terror. My sincere desire is that these perpetrators are rounded up and at least removed from free society, where they enjoy what they seek to destroy.
Fetters in Twain
Sufficient time has passed, to the point where I don’t remember much visual detail, but the impressions are revived every now and again in broad, vivid emotional recollection. After 34 years, I am still unsure as to the timing of this wave, but it washes over me occasionally, and I am glad.
One of the things that we don’t really experience, here in the New World, is the phenomenon of ancient cities, destroyed and rebuilt on the resulting ruins, century upon century. Rome is such a city. I remember quipping to my friends, with all the cynicism that a 14-year old could muster, that Rome was “like Tijuana, the dirt was just 1400 years older.” It is true that youth is wasted upon the young. Reaching parts of old Rome requires descending from the modern city to excavated and preserved levels, which only adds to one’s sense of leaving current time as well as space. This stuff is way old, and it smells old as one leaves the light and heat of the day to descend into the streets of the Forum – yes, the original one – and then into Mamertine Prison.
My efforts to refresh my memory today tell me that there is no confirmation that Saints Paul and Peter were ever here; it still does not diminish the effect that it had upon me, as I’m sure it continues to have upon others. I was with a tour group of about 14 people, mostly teens with a few sponsors, including my parents. Our Father, who art in Temecula, had specifically requested this particular stop on our Roman Holiday.
This prison was initially created as a cistern, with two chambers. The lower one was originally only accessed via a hole in its roof – prisoners were lowered (or thrown) into the lower section. I clearly remember a large metal door that was shown to lead into the ancient sewer system, and was informed that some unfortunates that did not survive their incarceration were merely disposed of in this manner. Having endured what at that point seemed a lifetime of Sunday school lessons depicting Peter and Paul singing the doors of prisons open, those illustrations paled into oblivion. This was a serious place, and a cold, dank, dark hole where the only access to light and life was controlled by taunting soldiers above, in conditions not much better than one’s own. Gazing at the bricks, feeling the cold in the midst of what I knew was a hot Summer’s day a couple of centuries above me, in the silence found only in subterranean places or perhaps deep space – I think I got a sense of how cold, hungry, and utterly alone one could be. I am happy to say that that’s the closest I’ve ever been to incarceration, so far. Perhaps this memory is one reason why.
Then comes the moment that means so much to me. We held hands, in a circle within the cistern, and began to sing an old hymn. My initial 14-year old resistance to the “corny-ness” of the moment began to melt within me as the familiar words began to take on a gripping reality:
“Once I was bound by sin’s galling fetters,
Chained like a slave, I suffered in vain.
Then I received a glorious freedom,
Freedom that rent my fetters in twain.
Glorious Freedom, Wonderful Freedom!
No more in chains of sin I repine
Jesus the glorious Emancipator
Now and Forever, He shall be mine!"
I don’t remember leaving the prison. I really don’t remember anything else from that day. I do know that a lot of things came into clearer focus for me that day – what others had done for me, the power of faith. Increasingly, over the years, gratitude to my parents for providing such an opportunity for me, that enabling such experiences was a pretty important calling. That light can truly pierce the darkness, in all its forms, in the darkest of places. That’s a few of them. I suppose, in a sense, it’s given me a certain confidence that things are never quite that bad, that there’s a spirit available in the worst circumstances, that God will never “leave me or forsake me.” As I said, it’s a feeling I get every once in a while . . .
One of the things that we don’t really experience, here in the New World, is the phenomenon of ancient cities, destroyed and rebuilt on the resulting ruins, century upon century. Rome is such a city. I remember quipping to my friends, with all the cynicism that a 14-year old could muster, that Rome was “like Tijuana, the dirt was just 1400 years older.” It is true that youth is wasted upon the young. Reaching parts of old Rome requires descending from the modern city to excavated and preserved levels, which only adds to one’s sense of leaving current time as well as space. This stuff is way old, and it smells old as one leaves the light and heat of the day to descend into the streets of the Forum – yes, the original one – and then into Mamertine Prison.
My efforts to refresh my memory today tell me that there is no confirmation that Saints Paul and Peter were ever here; it still does not diminish the effect that it had upon me, as I’m sure it continues to have upon others. I was with a tour group of about 14 people, mostly teens with a few sponsors, including my parents. Our Father, who art in Temecula, had specifically requested this particular stop on our Roman Holiday.
This prison was initially created as a cistern, with two chambers. The lower one was originally only accessed via a hole in its roof – prisoners were lowered (or thrown) into the lower section. I clearly remember a large metal door that was shown to lead into the ancient sewer system, and was informed that some unfortunates that did not survive their incarceration were merely disposed of in this manner. Having endured what at that point seemed a lifetime of Sunday school lessons depicting Peter and Paul singing the doors of prisons open, those illustrations paled into oblivion. This was a serious place, and a cold, dank, dark hole where the only access to light and life was controlled by taunting soldiers above, in conditions not much better than one’s own. Gazing at the bricks, feeling the cold in the midst of what I knew was a hot Summer’s day a couple of centuries above me, in the silence found only in subterranean places or perhaps deep space – I think I got a sense of how cold, hungry, and utterly alone one could be. I am happy to say that that’s the closest I’ve ever been to incarceration, so far. Perhaps this memory is one reason why.
Then comes the moment that means so much to me. We held hands, in a circle within the cistern, and began to sing an old hymn. My initial 14-year old resistance to the “corny-ness” of the moment began to melt within me as the familiar words began to take on a gripping reality:
“Once I was bound by sin’s galling fetters,
Chained like a slave, I suffered in vain.
Then I received a glorious freedom,
Freedom that rent my fetters in twain.
Glorious Freedom, Wonderful Freedom!
No more in chains of sin I repine
Jesus the glorious Emancipator
Now and Forever, He shall be mine!"
I don’t remember leaving the prison. I really don’t remember anything else from that day. I do know that a lot of things came into clearer focus for me that day – what others had done for me, the power of faith. Increasingly, over the years, gratitude to my parents for providing such an opportunity for me, that enabling such experiences was a pretty important calling. That light can truly pierce the darkness, in all its forms, in the darkest of places. That’s a few of them. I suppose, in a sense, it’s given me a certain confidence that things are never quite that bad, that there’s a spirit available in the worst circumstances, that God will never “leave me or forsake me.” As I said, it’s a feeling I get every once in a while . . .
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