To My Dear Sweet Hayden,
You are now a mighty young man of 13, and before life gets even crazier than it already has, I just wanted to write you a note to say thank you. Thank you for being you. Thank you for being my son. I'm horribly insecure, having spent most of my life's energy (until you came along) trying to please everyone else and always, always, always coming up short. Thank you for teaching me that you don't have to please anyone and you have absolutely NOTHING to apologize for. I LOVE your self confidence and feed off it.
Thank you for your joyous spirit! Thank you for leading with a smile when you walk into a room....any room. Thank you that when we encounter people we don't know out "there" in the world, you change people with your engaging smile. I absolutely LOVE following you in a crowd to watch the hearts that melt in your wake. It's magical.
Thank you for trying. In all the therapies, (all the puzzles, all the bounces on the giant balls, all the sit ups, all the climbing, all the bike riding), in all the outtings with your crazy parents ("what? I'm hiking ALL the way down to Abalone Cove???!"), all the meetings you've had to sit through, you try. You try to talk to us even though you can't hear much and the muscles in your mouth don't work all that well yet, and yet you try SO hard to be connected to me, to us, your family. Thank you. I feel unworthy of your efforts.
Thank you for reaching out to hug me when I'm completely overwhelmed and I've just lost my mind with all the demands of being the mom to two busy kids. Thank you for not holding a grudge against me for all of my juvenile behavior.
Thank you for changing my definition of what a family is and thank you for teaching me to see you how God sees each and every one of us, as treasured works of art, each with a unique mission here on earth.
I will forever be in your corner,
Your Mom
Take Me Out To The Ball Game!
Friday, October 28, 2011
Your Unborn Baby Can't Wait To Meet You
It's almost the end of October, which means it's almost the end of Down Syndrome Awareness Month (or if you're like my 11 year old daughter who's been waiting for three months, it's almost Halloween--a day I think is more about the "hype" for her than the actual day....but that's another post). Before my feeble brain cells take me completely off track I want to dedicate this post to the mom or dad out there who just found out that their unborn baby "may" have Down syndrome or Tisomy 21. Here are some facts:
*Prenatal tests are NOT always accurate. I've had friends who have gone through amnio's and they've come back negative, and then they gave birth to a baby with Down syndrome. I've had friends who have had blood tests showing elevated levels of proteins and the baby they give birth did NOT have Trisomy 21. There are NO guarantees in this life. There just aren't. Please get over this "I have a right to know all the variables so I can make a decision" (the emphasis being on the "I" as in "I" know what's right and wrong in this world). This post modern philosphy serves no purposes whatsover in the world of parenting a child with Down syndrome and the sooner you put that behind you, the better off you'll be.
*Doctors have MEDICAL degrees, they are NOT experts on how individual children develop and grow and they have NO business telling parents what their baby's future is going to be like. Doctors NOT immerse themselves in the special needs community where positive attitude and aptitude count for EVERYthing and most certainly are directly related to quality of life. Even in this day and age, in the year 2011, doctors in MAJOR hospitals (even here in Los Angeles) are telling parents of newly born babies with Down syndrome that there isn't much hope for their babies to learn their names, recognize their parents' faces, or have much of a life at all. DO NOT BELIEVE THESE LIARS. These are lies straight from the pits of hell, plain and simple.
(do I have your attention now?)
*This life with a child with Down syndrome is the BEST. That's a fact and I'll argue for it till the cows come home. Your heart will grow exponentially. Your baby (who will be a child before you know it) will DAILY teach you what it means to be strong and what it means to perservere. Does that mean that every child with DS has a "hard life" filled with physical and cognitive challenges? Not necessarily, but nearly every child with Down syndrome experiences challenges in at least one part of their lives; be it health, low muscle tone and coordination (not all kids with DS are "floppy" like Hayden was, but that extra chromosome does create an underlying "low muscle tone" issue, which pretty much every kiddo with DS that I know overcomes with time and patience), speech, or cognitive development. Despite all that, you will have the BEST and most pure love from your child with Down syndrome that you can even imagine. I'm pretty sure I can't describe this very well, but the love from your child will just knock you out. You don't deserve it, I don't deserve it, and yet that love they have for you is SO pure, SO unconditional. It's an honor to have them in your life.
*Last fact: this baby you're carrying who may have been identified as possibly having Down syndrome has a BRIGHT future!! They are fierce and strong!! When that sweet smile emerges at a few weeks old when you walk into a room it will strengthen you, embolden you, and it will hold you up when you need it no matter where your life takes you. Please give them a chance to bring the happiness and joy into your heart that I'm gifted to live with every single day.
*Prenatal tests are NOT always accurate. I've had friends who have gone through amnio's and they've come back negative, and then they gave birth to a baby with Down syndrome. I've had friends who have had blood tests showing elevated levels of proteins and the baby they give birth did NOT have Trisomy 21. There are NO guarantees in this life. There just aren't. Please get over this "I have a right to know all the variables so I can make a decision" (the emphasis being on the "I" as in "I" know what's right and wrong in this world). This post modern philosphy serves no purposes whatsover in the world of parenting a child with Down syndrome and the sooner you put that behind you, the better off you'll be.
*Doctors have MEDICAL degrees, they are NOT experts on how individual children develop and grow and they have NO business telling parents what their baby's future is going to be like. Doctors NOT immerse themselves in the special needs community where positive attitude and aptitude count for EVERYthing and most certainly are directly related to quality of life. Even in this day and age, in the year 2011, doctors in MAJOR hospitals (even here in Los Angeles) are telling parents of newly born babies with Down syndrome that there isn't much hope for their babies to learn their names, recognize their parents' faces, or have much of a life at all. DO NOT BELIEVE THESE LIARS. These are lies straight from the pits of hell, plain and simple.
(do I have your attention now?)
*This life with a child with Down syndrome is the BEST. That's a fact and I'll argue for it till the cows come home. Your heart will grow exponentially. Your baby (who will be a child before you know it) will DAILY teach you what it means to be strong and what it means to perservere. Does that mean that every child with DS has a "hard life" filled with physical and cognitive challenges? Not necessarily, but nearly every child with Down syndrome experiences challenges in at least one part of their lives; be it health, low muscle tone and coordination (not all kids with DS are "floppy" like Hayden was, but that extra chromosome does create an underlying "low muscle tone" issue, which pretty much every kiddo with DS that I know overcomes with time and patience), speech, or cognitive development. Despite all that, you will have the BEST and most pure love from your child with Down syndrome that you can even imagine. I'm pretty sure I can't describe this very well, but the love from your child will just knock you out. You don't deserve it, I don't deserve it, and yet that love they have for you is SO pure, SO unconditional. It's an honor to have them in your life.
*Last fact: this baby you're carrying who may have been identified as possibly having Down syndrome has a BRIGHT future!! They are fierce and strong!! When that sweet smile emerges at a few weeks old when you walk into a room it will strengthen you, embolden you, and it will hold you up when you need it no matter where your life takes you. Please give them a chance to bring the happiness and joy into your heart that I'm gifted to live with every single day.
An Overdue Dose Of Humility
Do you ever read something or hear something and wonder, "Did I hear that right? Did he/she meant to say that?". Well, this morning I received what felt like a sharp rebuke from a friend, not necessarily a close friend, but someone with whom I'm certainly friendly and with whom I have regular contact. It was in the context of me asking on a social media forum about when a particular meeting was coming up, and I joked about myself in the question, saying something like "well if I were more organized, I'd probably know about this meeting which is about organization!". And he responded by saying how nice it would be if the group to which I was referring had a website, a calendar, etc... in which to communicate upcoming events. Now it's very possible that this person wasn't trying to be snarky in any way and that his tone was intended to be completely benign. But it felt like a slap and so I thought, "hmmmm I may need to consider this a bit". And so I did a few minutes later, while Shalom (our Newfoundland) and I were schlepping ourselves around the park a few times (okay, okay, I'll be honest: I was schlepping pitifully, Shalom effortlessly trotted for the first couple of laps around the park and then she too began schlepping and trying to peel off toward the Suburban she off down the hillside as we rounded the corner).
Back in the day when Hayden was a baby and our hair was on fire about forming a Down syndrome support group for parents in our community (there were no active Down syndrome groups or disability groups of any kind), I was unbelievably arrogant, now that I look back on it. The group we formed really was all about "us", but I did my level best to dress it up in a way that it looked like I was serving others though. Don't get me wrong, we DID want to connect with other families, we DID (and DO) want to make sure that parents knew everything they possibly could about feeding methods, different types of therapies, how to create Infant Family Support Plans and IEP's that really would serve the individual child, and we really DID want to have friends that would share our journey through disability with us, etc...., but underneath it all I'm pretty sure my attitude was, "I've gone to all this work to make these meetings happen; I send out e-mails, I make fliers (this was WAY BACK in the day before a common schlub like me would even consider creating a webpage on my own. Come to think of it, I don't think this schlub would do it even today!), "I make phone calls letting people know what's going on out there in the community, the least "you" can do (the "you" being that parent of another child in the community with Down syndrome) is pay attention! I'm working here!!" Ya, I was all about having a servant's heart.
So the medicine I got this morning may or may not have been intended to sting, but since it did sting, I take it as a welcome sign that I sorely needed a dose of humility. A little trip down memory-lane if you will; to remember back in the day when it was just Hayden and us, and then a newborn baby girl (and yes she had significant special needs and we were VERY busy on every level trying to provide her with supports and services all the while trying our best to adopt her-but it seemed a LOT simpler then) and how our lives revolved around "us" and our efforts "for" the community without really stopping very often to take into consideration what those other families were going through at the time and what could have been preventing them from jumping in feet-first. Without sounding like a martyred soul, raising a child (even a young one) with special needs is well, special. There ARE more appointments, there IS more paperwork that ONLY you can take care of. There are more stresses on our every day lives than that of a typical family. And that's just if the child we're talking about is "healthy", not requring many medical interventions and not taking into account the other children you may have and just all it takes to be a parent. Ya, it's crazy!!
Since leaving that town where our kids were born a few years ago, our lives have taken a couple of significant turns; geographically, spiritually, emotionally, etc.... And while Hayden has been relatively "healthy" overall, for the first seven years of his life he had life-threatening ear infections, eight major reconstructive ear surgeries (including peeling back the ear itself and ridding the middle ear of potentially deadly bacteria) and a life changing bout with Infantile Spasms, which forever changed Hayden and our family. About the time Hayden was getting healthy (and we began homeschooling,-NO coincidence there with the state how his health steadily improved), we began to realize that our daughter was exhibiting some traits beyond what knew her challenges in the sensory integration arena to be, and that has led us to the world of autism. So for the past six years (and counting) our days are taken up mainly with getting through with as few blow ups as possible. To say it's been rough doesn't even begin to describe what most of our days are like. I'm glad I didn't know then what I know now, but I sure wish that I had had more compassion for my fellow parents on the journey and what they could have been experiencing as we were on the road together.
Of course hindsight being 20-20 and all that, I sure hope that despite my ego, I helped even one person and never made someone feel small. And if I did, I hope I have the opportunity to apologize one day.
Back in the day when Hayden was a baby and our hair was on fire about forming a Down syndrome support group for parents in our community (there were no active Down syndrome groups or disability groups of any kind), I was unbelievably arrogant, now that I look back on it. The group we formed really was all about "us", but I did my level best to dress it up in a way that it looked like I was serving others though. Don't get me wrong, we DID want to connect with other families, we DID (and DO) want to make sure that parents knew everything they possibly could about feeding methods, different types of therapies, how to create Infant Family Support Plans and IEP's that really would serve the individual child, and we really DID want to have friends that would share our journey through disability with us, etc...., but underneath it all I'm pretty sure my attitude was, "I've gone to all this work to make these meetings happen; I send out e-mails, I make fliers (this was WAY BACK in the day before a common schlub like me would even consider creating a webpage on my own. Come to think of it, I don't think this schlub would do it even today!), "I make phone calls letting people know what's going on out there in the community, the least "you" can do (the "you" being that parent of another child in the community with Down syndrome) is pay attention! I'm working here!!" Ya, I was all about having a servant's heart.
So the medicine I got this morning may or may not have been intended to sting, but since it did sting, I take it as a welcome sign that I sorely needed a dose of humility. A little trip down memory-lane if you will; to remember back in the day when it was just Hayden and us, and then a newborn baby girl (and yes she had significant special needs and we were VERY busy on every level trying to provide her with supports and services all the while trying our best to adopt her-but it seemed a LOT simpler then) and how our lives revolved around "us" and our efforts "for" the community without really stopping very often to take into consideration what those other families were going through at the time and what could have been preventing them from jumping in feet-first. Without sounding like a martyred soul, raising a child (even a young one) with special needs is well, special. There ARE more appointments, there IS more paperwork that ONLY you can take care of. There are more stresses on our every day lives than that of a typical family. And that's just if the child we're talking about is "healthy", not requring many medical interventions and not taking into account the other children you may have and just all it takes to be a parent. Ya, it's crazy!!
Since leaving that town where our kids were born a few years ago, our lives have taken a couple of significant turns; geographically, spiritually, emotionally, etc.... And while Hayden has been relatively "healthy" overall, for the first seven years of his life he had life-threatening ear infections, eight major reconstructive ear surgeries (including peeling back the ear itself and ridding the middle ear of potentially deadly bacteria) and a life changing bout with Infantile Spasms, which forever changed Hayden and our family. About the time Hayden was getting healthy (and we began homeschooling,-NO coincidence there with the state how his health steadily improved), we began to realize that our daughter was exhibiting some traits beyond what knew her challenges in the sensory integration arena to be, and that has led us to the world of autism. So for the past six years (and counting) our days are taken up mainly with getting through with as few blow ups as possible. To say it's been rough doesn't even begin to describe what most of our days are like. I'm glad I didn't know then what I know now, but I sure wish that I had had more compassion for my fellow parents on the journey and what they could have been experiencing as we were on the road together.
Of course hindsight being 20-20 and all that, I sure hope that despite my ego, I helped even one person and never made someone feel small. And if I did, I hope I have the opportunity to apologize one day.
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