Monday, October 31, 2011
Supposed to be
Good morning. As October draws to a close, I wanted to celebrate Down Syndrome Awareness Month just one more time. This is a re-post, but it is one that it on my heart regularly. I hope you enjoy it--whether you saw it the first time around or not. :-)
I'm up early. Roo woke me up at 4:45, and I never got back to sleep. I actually kind of enjoy the early mornings—I'm not a morning person by nature, but when forced into it by my baby boy, I like having some time to myself when the rest of the house is quiet, getting a head start on the day, and being fully awake and happy when my kiddos are up for the day. I would probably enjoy it more if I hadn't stayed up until 11:00 last night… I am an 8-hours-of-sleep-minimum kind of girl… but, well, there's nothing to be done about that now.
But this morning I woke up with a familiar grumbling in my head: This isn't how it's supposed to be. Not the 4:45 wake-up call—I would rather he slept through the night (We had a good run for a while, but now we're back to being up 1-2 times per night.), but I can deal with that. Not the short amount of sleep overall—that's my own stupid fault for staying up so late. No, I was just thinking of all the… stuff. Yesterday was Roo's semi-annual IFSP meeting. This is where I sit down with our Early Intervention Specialist and our Service Coordinator (I'm not even going to pretend that I can explain to you exactly what those two women do, so just go with it.) and we go over all of the notes from our various therapists and set goals for Roo. Goals for my 9-month-old. Things that he needs to work on. Seriously? Sigh. This isn't how it's supposed to be. Over the next few days I'm going to be spending time with some people who are likely to have a lot of questions about Roo and Down syndrome, and I am very happy to answer them and so glad that they care. But I wish I weren't the one answering those questions. This isn't how it's supposed to be. On Thursday I'm going to another conference about Down syndrome and development and how to help my child learn. I didn't have to work this darn hard at helping my other kids learn to sit, crawl, play, talk… This isn't how it's supposed to be.
But here's the thing: Yes, it is. This is exactly how it's supposed to be. This may not be what I had planned, what I envisioned for my life or my child's life; but it is what God had planned. From the beginning. This is how it's supposed to be. And I can tell you from experience, whatever God has planned is way better than any plans I try to make on my own apart from Him.
I've been reading Choosing to See by Mary Beth Chapman. I highly recommend it—what an amazing story God has given this family. And I don't have the book in front of me, so I can't give you an exact quote… but at the funeral for her 5-year-old daughter, her teenage son shared that God is an artist, and we are too close to the canvas to be able to make sense of His artwork. But someday we'll be able to stand back—way back—and see what He was doing, how it all comes together to make the perfect masterpiece. I love that image.
This is how it's supposed to be. This is all part of God's masterpiece.
So I brush my grumbling thought aside—again. It's not the first time I've had to do it, and it won't be the last. But I do it. I push it away, and I claim the truth that I know:
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." –Jeremiah 29:11
Friday, October 28, 2011
...And the Same
I grew up with someone whose parents openly had a favorite child--her. She was from a large-ish family, but it was no secret that she was the golden child as far as both of her parents were concerned. They openly admitted it. Great for her, maybe not so great for her siblings, eh?
Over the past year or so, I have heard a lot of remarks regarding how parents of kids with Down syndrome must love their extra-chromosome-sporting child. Some people feel sorry for the siblings: "The other children must grow to resent their sibling who gets so much love and attention." Others feel sorry for the child with Down's: "Even with their limited capacity to understand, they must realize that their parents just can't love them as much as the other kids." And others are just plain mean and stupid: "Isn't having a kid with Down's about the same as having a pet? I mean, they're cute and all, but can they really do anything useful?" (Yes, that is something that was actually said; no, it was not said to me. You haven't heard reports of any severe beatings in my area, have you? Believe me, I don't have that kind of self-control.)
At the bottom of all this is the question that is really on everyone's mind: "Can you really love all of your kids the same?"
The answer is yes, I do.
And no, I don't.
Let me explain. You see, my love for my children--all three of them--goes through two filters, for lack of a better word. First, the filter of who I am; second, the filter of who they are.
I am their mother--they are my children. All of them. Roo is not my-child-with-Down-syndrome. He is my son. I finally understand why my parents could say that they love me the same as my brothers even though I was not biologically theirs--not that I ever doubted it, but now I truly get it. I have three children. I love them the same.
And then again, I don't. Because the second filter is where their individual personalities and needs come in, and if I just love them all "the same" when I look through this filter, I'm not doing them justice. I don't look at Roo as my child with Down syndrome, but I am acutely aware at every minute that he has Down's and thinking about how every single thing will affect or be affected by that. I am more intentional with how I talk to him and play with him. I am more careful about who watches him. I am more knowledgable about his future schooling.
Lamb and Monkey have their own filters too. When I parent Lamb, I am aware that she is easily frustrated, and that she is very much like me and knows how to push my buttons. I know that her primary love language is gifts, followed closely by words of affirmation. I know that she is driven to succeed, that she wants the approval of her daddy more than just about anything, and that relationships are very important to her.
And Monkey, he loves to entertain. He likes to joke, but not to tease--or be teased. If I yell at him, he blows me off; if I speak kindly but sternly, he breaks down into sobs, even over the smallest things. He wants to be a "big kid" like his sister and cousins (who are all older) so badly it's almost tangible. He absolutely LOVES to be a gentleman, doing things like holding the door open for people or doing favors. His primary love language is quality time, which is a hard one for me--which is ironic, because it is also Mr. Fantastic's primary love language. He wears his heart on his sleeve, and EVERYBODY knows how he's feeling, because good or bad... it's LOUD.
All of these things are constantly running through my mind as I parent, interact with, and love my children. And with very few exceptions, most of them are not set in stone. They are all still pretty little in the grand scheme of things, and their likes & dislikes, their personalities, the things that motivate them--they're all growing and changing with the kids. And I have to be aware of that too.
My love for them is the same. The same amount, the same fierceness, the same loyalty. I would fight for any one of them. I would die for any one of them.
My love for them is different. It has to be. They are three different people. And if I ignored that and tried to just love and parent and treat them all exactly the same... would that really be loving them at all?
Over the past year or so, I have heard a lot of remarks regarding how parents of kids with Down syndrome must love their extra-chromosome-sporting child. Some people feel sorry for the siblings: "The other children must grow to resent their sibling who gets so much love and attention." Others feel sorry for the child with Down's: "Even with their limited capacity to understand, they must realize that their parents just can't love them as much as the other kids." And others are just plain mean and stupid: "Isn't having a kid with Down's about the same as having a pet? I mean, they're cute and all, but can they really do anything useful?" (Yes, that is something that was actually said; no, it was not said to me. You haven't heard reports of any severe beatings in my area, have you? Believe me, I don't have that kind of self-control.)
At the bottom of all this is the question that is really on everyone's mind: "Can you really love all of your kids the same?"
The answer is yes, I do.
And no, I don't.
Let me explain. You see, my love for my children--all three of them--goes through two filters, for lack of a better word. First, the filter of who I am; second, the filter of who they are.
I am their mother--they are my children. All of them. Roo is not my-child-with-Down-syndrome. He is my son. I finally understand why my parents could say that they love me the same as my brothers even though I was not biologically theirs--not that I ever doubted it, but now I truly get it. I have three children. I love them the same.
And then again, I don't. Because the second filter is where their individual personalities and needs come in, and if I just love them all "the same" when I look through this filter, I'm not doing them justice. I don't look at Roo as my child with Down syndrome, but I am acutely aware at every minute that he has Down's and thinking about how every single thing will affect or be affected by that. I am more intentional with how I talk to him and play with him. I am more careful about who watches him. I am more knowledgable about his future schooling.
Lamb and Monkey have their own filters too. When I parent Lamb, I am aware that she is easily frustrated, and that she is very much like me and knows how to push my buttons. I know that her primary love language is gifts, followed closely by words of affirmation. I know that she is driven to succeed, that she wants the approval of her daddy more than just about anything, and that relationships are very important to her.
And Monkey, he loves to entertain. He likes to joke, but not to tease--or be teased. If I yell at him, he blows me off; if I speak kindly but sternly, he breaks down into sobs, even over the smallest things. He wants to be a "big kid" like his sister and cousins (who are all older) so badly it's almost tangible. He absolutely LOVES to be a gentleman, doing things like holding the door open for people or doing favors. His primary love language is quality time, which is a hard one for me--which is ironic, because it is also Mr. Fantastic's primary love language. He wears his heart on his sleeve, and EVERYBODY knows how he's feeling, because good or bad... it's LOUD.
All of these things are constantly running through my mind as I parent, interact with, and love my children. And with very few exceptions, most of them are not set in stone. They are all still pretty little in the grand scheme of things, and their likes & dislikes, their personalities, the things that motivate them--they're all growing and changing with the kids. And I have to be aware of that too.
My love for them is the same. The same amount, the same fierceness, the same loyalty. I would fight for any one of them. I would die for any one of them.
My love for them is different. It has to be. They are three different people. And if I ignored that and tried to just love and parent and treat them all exactly the same... would that really be loving them at all?
Thursday, October 27, 2011
Different...
This is my guest post from Jamey's blog, Zehlahlum Family, earlier this month. I wanted to share it again here because I have another post coming that I think goes well with this one... and because Down Syndrome Awareness Month is almost over, and I have spent much of the month tending to sick kids and digging myself out of an endless laundry pit. If you have been around for a while, you know much of the "back story" already, but I still wanted to share this "theme" with you again...
On one wall of my house, I have a “photo collection” of each of my kids—you know, the ones with multiple pictures that the photography studios talkbrainless fools devoted parents such as myself into buying. The ones of my boys are each from their one-year “photo shoot” (I hate that term. It sounds so vain and uppity, but what else do you call it?), and as I walked past them the other day I looked up and caught my breath.
I can see it, I thought. He looks different.
It was last June when my youngest, almost three months old at the time, was diagnosed with Down syndrome. Although Roo had been born three weeks early, spent a week in Children’s Hospital for a list of issues that came up after his birth, and been to several well-child visits, not one single person had ever suspected or mentioned the term Down syndrome—not even our pediatrician, who had sent us to the geneticist. She had simply asked us to get some blood tests run to “rule out any issues.” That was the moment, as Jamey mentioned in an earlier post, where “the world falls away beneath your feet.” I didn’t understand how the earth could keep spinning, how people could just keep going about their business. Didn’t they understand what had just happened to us?
The denial set in quickly, and my first act was to take the book that our very kind genetic counselor had handed us—the one with the cute little toddler with Down’s on the cover—and turn it face down. I couldn’t look at that little boy’s face and see my child.
We went home and told our parents, who were all there waiting for us. We sat on the couch and cried, and in desperation I looked up to the ceiling. As my eyes turned skyward, they passed over our most recent family photos, taken before Roo was born. I looked at them and tried to imagine us, 10 years down the road, our little family… with this child that stood out standing right in the middle. I couldn’t make it make sense.
Please don’t think that I am so shallow that my main concern was how my baby was going to look. It wasn’t that. It was what it represented. He would be different. He would stand out. He would be misunderstood. It would be hard. The family picture I thought we would take was not the family picture that would be hanging on my wall. Although nothing had changed, life was suddenly very different. The photo on the book, the photos on our wall—they were just physical reminders of an intangible issue tugging at my heart.
So we began to navigate this new life, and I went through weeks of denial, then months of anger. But never once did I doubt my love for my sweet baby boy. In fact, I learned that there is such a sweet delight in working so hard toward little milestones, like banging two toys together or turning the page of a board book. He brings me joy in ways I didn’t know existed. And when I look at him, I don’t see a-child-with-Down-syndrome—I see Roo.
And then the other day, I saw those pictures. And I stopped and looked again. I see it, I thought, as I looked at the pictures of my boys side-by-side. The set of his eyes, the flatness to the back of his head, the way he carries himself… He just looks different.
And then… I looked past the pictures of Roo, past the pictures of Monkey (my older son), and over to the picture collage of my daughter Lamb. And as I gazed back and forth between the photos of my two oldest children, I laughed out loud. Their eyes are different from each other, their hair is different, their smiles, the way they carry themselves, the way their personalities shine through in the snapshots. They’re different. In fact, I am constantly amazed that all three of my children come from the same combination of DNA, and yet they are all so completely… one-of-a-kind.
So let me tell you a little bit about my family, this zoo that I have. There’s Lamb, who is beautiful and loves to dance and play princesses and have tea parties… and practice her “ninja moves” and play superheroes with her brother. She would wear a ball gown to school every day if I let her, and it would come back home covered in paint and crayons because she loves to craft more than just about anything. She gets that from her grandmother (my mother-in-law), definitely not from me. There’s Monkey, the toughest sweetheart you’ll ever find. He is constantly being a superhero or Transformer or Power Ranger of some sort and loves to play boxing and wrestling and all of those super-tough boy things that I can’t say I completely understand—and he will break down and cry if you give him a stern look. So tough, yet so tender. And then there’s my sweet baby Roo, who absolutely loves to make people smile. He draws people to himself—complete strangers stop us constantly to dote on him because he is just that lovable. He adores his older siblings and is determined to be in the same room with them at all times. He loves to wrestle with his brother and sing with his sister. He throws everything he can get his hands on—except cars, which he loves to push back and forth while making “vroom” noises. Oh, and did I mention that he has Down syndrome?
You put them all together, throw in Mommy and Daddy, and I think we make a pretty sweet-looking family photo, don’t you?
Thank God they are all so different from each other. It makes our lives full.
On one wall of my house, I have a “photo collection” of each of my kids—you know, the ones with multiple pictures that the photography studios talk
I can see it, I thought. He looks different.
It was last June when my youngest, almost three months old at the time, was diagnosed with Down syndrome. Although Roo had been born three weeks early, spent a week in Children’s Hospital for a list of issues that came up after his birth, and been to several well-child visits, not one single person had ever suspected or mentioned the term Down syndrome—not even our pediatrician, who had sent us to the geneticist. She had simply asked us to get some blood tests run to “rule out any issues.” That was the moment, as Jamey mentioned in an earlier post, where “the world falls away beneath your feet.” I didn’t understand how the earth could keep spinning, how people could just keep going about their business. Didn’t they understand what had just happened to us?
The denial set in quickly, and my first act was to take the book that our very kind genetic counselor had handed us—the one with the cute little toddler with Down’s on the cover—and turn it face down. I couldn’t look at that little boy’s face and see my child.
We went home and told our parents, who were all there waiting for us. We sat on the couch and cried, and in desperation I looked up to the ceiling. As my eyes turned skyward, they passed over our most recent family photos, taken before Roo was born. I looked at them and tried to imagine us, 10 years down the road, our little family… with this child that stood out standing right in the middle. I couldn’t make it make sense.
Please don’t think that I am so shallow that my main concern was how my baby was going to look. It wasn’t that. It was what it represented. He would be different. He would stand out. He would be misunderstood. It would be hard. The family picture I thought we would take was not the family picture that would be hanging on my wall. Although nothing had changed, life was suddenly very different. The photo on the book, the photos on our wall—they were just physical reminders of an intangible issue tugging at my heart.
So we began to navigate this new life, and I went through weeks of denial, then months of anger. But never once did I doubt my love for my sweet baby boy. In fact, I learned that there is such a sweet delight in working so hard toward little milestones, like banging two toys together or turning the page of a board book. He brings me joy in ways I didn’t know existed. And when I look at him, I don’t see a-child-with-Down-syndrome—I see Roo.
And then the other day, I saw those pictures. And I stopped and looked again. I see it, I thought, as I looked at the pictures of my boys side-by-side. The set of his eyes, the flatness to the back of his head, the way he carries himself… He just looks different.
And then… I looked past the pictures of Roo, past the pictures of Monkey (my older son), and over to the picture collage of my daughter Lamb. And as I gazed back and forth between the photos of my two oldest children, I laughed out loud. Their eyes are different from each other, their hair is different, their smiles, the way they carry themselves, the way their personalities shine through in the snapshots. They’re different. In fact, I am constantly amazed that all three of my children come from the same combination of DNA, and yet they are all so completely… one-of-a-kind.
So let me tell you a little bit about my family, this zoo that I have. There’s Lamb, who is beautiful and loves to dance and play princesses and have tea parties… and practice her “ninja moves” and play superheroes with her brother. She would wear a ball gown to school every day if I let her, and it would come back home covered in paint and crayons because she loves to craft more than just about anything. She gets that from her grandmother (my mother-in-law), definitely not from me. There’s Monkey, the toughest sweetheart you’ll ever find. He is constantly being a superhero or Transformer or Power Ranger of some sort and loves to play boxing and wrestling and all of those super-tough boy things that I can’t say I completely understand—and he will break down and cry if you give him a stern look. So tough, yet so tender. And then there’s my sweet baby Roo, who absolutely loves to make people smile. He draws people to himself—complete strangers stop us constantly to dote on him because he is just that lovable. He adores his older siblings and is determined to be in the same room with them at all times. He loves to wrestle with his brother and sing with his sister. He throws everything he can get his hands on—except cars, which he loves to push back and forth while making “vroom” noises. Oh, and did I mention that he has Down syndrome?
You put them all together, throw in Mommy and Daddy, and I think we make a pretty sweet-looking family photo, don’t you?
Thank God they are all so different from each other. It makes our lives full.
Tuesday, October 18, 2011
Doubts
I feel the need to add a disclaimer that this post was not created out of the stress of the past couple of days and spurred on by exhaustion. I actually wrote this last week and scheduled it for this morning. I could probably add some more to it this morning in my sleep-deprived weariness, but I think it's best just to share with you what I wrote when my head was clearer. :-)
I don't know about you, but sometimes I need to write things down. (Surprise, surprise, eh?) Some days I get completely overwhelmed by the to-do list or the shopping list or the list of questions I need to ask or any one of the many lists that I try to keep in my head. The tasks seem impossible... until I write them down. Once I see them in black and white, they aren't so scary. And sometimes the lists aren't as long as they seem in my head. Suddenly the impossible seems managable, even reasonable. And suddenly I start to feel better, breathe easier--maybe even laugh a little at myself.
Lately I have had a lot of doubts on my mind. They started slowly, just a question here and there, a concern now and then. And then they started to grow. My head is hurting more, my stomach is aching more, the tears are coming more... and I'm sleeping less. The doubts are growing, and I am worrying. And the worries... well, they are intimidating. Overwhelming. Impossible.
So this morning I decided it was time to try my old trick. Get them out of my head. Get them on "paper"--or screen, at least. In the spirit of trying to ease my mind, in the hopes that they will seem less scary when I actually write them down, I'm going to share with you the doubts and questions that have been plaguing me.
What if I should have been more concerned about Roo's slow weight gain?
What if that slow growth also slowed down his mental development--and it's my fault?
What if Roo's many colds last year slowed down his development? I was catching up on The Blessing of Verity the other day and read this: "Why are we so vigilant over Verity’s health? When typical babies get sick, even repeatedly, it doesn’t affect their overall development. They will still meet their milestones effortlessly. When babies with special needs are repeatedly ill, it can have a serious negative impact on their long-term development." She also says, "We can’t prove her health is a result of mama’s milk, vitamin D, probiotics, fish oils, grapefruit seed extract, Sambucus, extra-virgin organic unrefined coconut oil, superfood fruits and vegetables, staying away from dairy and groups of peers with runny noses, or any other factors! But they can’t be hurting, either." I'm not doing those things. If Roo's coughs and stuffy noses and fevers harmed his overall development... it's my fault.
What if I'm not stimulating him enough? In that same post, Verity's mama goes on to say, "Since her birth, we have done our best not to let Verity have any 'down time,' no break from being challenged and stimulated in some way, unless she is asleep. Again, this has become part of the collective family consciousness. We all help to keep her engaged and working, to keep her from sitting and doing nothing, or 'blobbing,' as I call it." What if he is falling behind the other babies we know because of this under-stimulation? It's my fault.
How can I stimulate him more and still take responsible care of the rest of my family? Already the laundry is piling up, the floors need swept, the bathrooms need cleaned--not to mention the projects that are growing. I'm not even keeping up with the current level of chaos, let alone making any head way.
What if I'm not spending enough time with the big kids? What if they start to resent Roo because of all of the time and attention he needs? If they start to resent him, it's my fault.
How can I teach my kids that they are more important than housework, and still teach them to be responsible, good stewards? If they grow up to be irresonsible slobs, it's my fault.
What if I'm comparing too much?
What if I'm not comparing enough?
What if we're missing something? Something in his eyes, his ears, his brain that could be slowing down his development--or worse, something that could affect his health in the long-term.
What if...?
And underneath it all... at the very root of all these questions... is WHY. But it's not the "why" of a year ago. I'm no longer asking, "Why, God, did you bring this into our family? Why are you making our baby suffer? Why are you making life hard for us?"
No, now it's a different "why." Now I wonder...
Why did you give this incredible baby to me, when I am already failing him? Why didn't you realize that there are thousands of moms out there who would be so much better for him?
I heard an interview this week with a Christian counselor and pastor. He was actually talking about victims of sexual abuse, but he said something that really hit home with me. He said that today's oh-so-popular depression "cure" of Positive-Self Talk doesn't work, because the things you tell yourself aren't necessarily true. I can look myself in the mirror every day and say, "You are an amazing rocket scientist!" But that doesn't make it true, so when I go out and try to get a job at NASA, they'll just laugh me out of there.
And do you know what else? Messages like "It's my fault" are a lot more powerful than messages like "I'm sure I'm doing fine."
But do you know what is effective? Scripture. Because Scripture is true, and I know it's true. If I keep it in my head, if I constantly remind myself of the truth... I'll be better equipped to fight the doubts.
That's the hope, anyway. That's what this counselor said. And I definitely found it to be true in my struggles with depression before. So it's worth trying now.
So here's the deal... Plan A didn't really work too well for me. Writing down those doubts... didn't make them less scary. Instead, I'm in tears just from typing them out, from sharing with all of you the ugly thoughts that are in my head.
It's time for Plan B. And maybe Plan B should have been Plan A all along. Because Plan B is the Word of God.
Here's what I know is true...
"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" --Jeremiah 29:11
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." --Psalm 139:13-14
"Praise be to the Lord, to God our Savior, who daily bears our burdens." --Psalm 68:19
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." --Matthew 11:28-29
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." --John 14:27
"Above all else, guard your heart, for everything you do flows from it." --Proverbs 4:23
Father, help me to guard my heart. Help me to fill it with truth--and You are the Truth. Your works are wonderful, I know that full well. Help me to trust in You, in your plan for me and my family.
I don't know about you, but sometimes I need to write things down. (Surprise, surprise, eh?) Some days I get completely overwhelmed by the to-do list or the shopping list or the list of questions I need to ask or any one of the many lists that I try to keep in my head. The tasks seem impossible... until I write them down. Once I see them in black and white, they aren't so scary. And sometimes the lists aren't as long as they seem in my head. Suddenly the impossible seems managable, even reasonable. And suddenly I start to feel better, breathe easier--maybe even laugh a little at myself.
Lately I have had a lot of doubts on my mind. They started slowly, just a question here and there, a concern now and then. And then they started to grow. My head is hurting more, my stomach is aching more, the tears are coming more... and I'm sleeping less. The doubts are growing, and I am worrying. And the worries... well, they are intimidating. Overwhelming. Impossible.
So this morning I decided it was time to try my old trick. Get them out of my head. Get them on "paper"--or screen, at least. In the spirit of trying to ease my mind, in the hopes that they will seem less scary when I actually write them down, I'm going to share with you the doubts and questions that have been plaguing me.
What if I should have been more concerned about Roo's slow weight gain?
What if that slow growth also slowed down his mental development--and it's my fault?
What if Roo's many colds last year slowed down his development? I was catching up on The Blessing of Verity the other day and read this: "Why are we so vigilant over Verity’s health? When typical babies get sick, even repeatedly, it doesn’t affect their overall development. They will still meet their milestones effortlessly. When babies with special needs are repeatedly ill, it can have a serious negative impact on their long-term development." She also says, "We can’t prove her health is a result of mama’s milk, vitamin D, probiotics, fish oils, grapefruit seed extract, Sambucus, extra-virgin organic unrefined coconut oil, superfood fruits and vegetables, staying away from dairy and groups of peers with runny noses, or any other factors! But they can’t be hurting, either." I'm not doing those things. If Roo's coughs and stuffy noses and fevers harmed his overall development... it's my fault.
What if I'm not stimulating him enough? In that same post, Verity's mama goes on to say, "Since her birth, we have done our best not to let Verity have any 'down time,' no break from being challenged and stimulated in some way, unless she is asleep. Again, this has become part of the collective family consciousness. We all help to keep her engaged and working, to keep her from sitting and doing nothing, or 'blobbing,' as I call it." What if he is falling behind the other babies we know because of this under-stimulation? It's my fault.
How can I stimulate him more and still take responsible care of the rest of my family? Already the laundry is piling up, the floors need swept, the bathrooms need cleaned--not to mention the projects that are growing. I'm not even keeping up with the current level of chaos, let alone making any head way.
What if I'm not spending enough time with the big kids? What if they start to resent Roo because of all of the time and attention he needs? If they start to resent him, it's my fault.
How can I teach my kids that they are more important than housework, and still teach them to be responsible, good stewards? If they grow up to be irresonsible slobs, it's my fault.
What if I'm comparing too much?
What if I'm not comparing enough?
What if we're missing something? Something in his eyes, his ears, his brain that could be slowing down his development--or worse, something that could affect his health in the long-term.
What if...?
And underneath it all... at the very root of all these questions... is WHY. But it's not the "why" of a year ago. I'm no longer asking, "Why, God, did you bring this into our family? Why are you making our baby suffer? Why are you making life hard for us?"
No, now it's a different "why." Now I wonder...
Why did you give this incredible baby to me, when I am already failing him? Why didn't you realize that there are thousands of moms out there who would be so much better for him?
I heard an interview this week with a Christian counselor and pastor. He was actually talking about victims of sexual abuse, but he said something that really hit home with me. He said that today's oh-so-popular depression "cure" of Positive-Self Talk doesn't work, because the things you tell yourself aren't necessarily true. I can look myself in the mirror every day and say, "You are an amazing rocket scientist!" But that doesn't make it true, so when I go out and try to get a job at NASA, they'll just laugh me out of there.
And do you know what else? Messages like "It's my fault" are a lot more powerful than messages like "I'm sure I'm doing fine."
But do you know what is effective? Scripture. Because Scripture is true, and I know it's true. If I keep it in my head, if I constantly remind myself of the truth... I'll be better equipped to fight the doubts.
That's the hope, anyway. That's what this counselor said. And I definitely found it to be true in my struggles with depression before. So it's worth trying now.
So here's the deal... Plan A didn't really work too well for me. Writing down those doubts... didn't make them less scary. Instead, I'm in tears just from typing them out, from sharing with all of you the ugly thoughts that are in my head.
It's time for Plan B. And maybe Plan B should have been Plan A all along. Because Plan B is the Word of God.
Here's what I know is true...
"'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.'" --Jeremiah 29:11
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." --Psalm 139:13-14
"Praise be to the Lord, to God our Savior, who daily bears our burdens." --Psalm 68:19
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." --Matthew 11:28-29
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." --John 14:27
"Above all else, guard your heart, for everything you do flows from it." --Proverbs 4:23
Father, help me to guard my heart. Help me to fill it with truth--and You are the Truth. Your works are wonderful, I know that full well. Help me to trust in You, in your plan for me and my family.
Monday, October 17, 2011
ER
Good morning, friends. If you are a Facebook fan of Diary of a Zookeeper, you know that we had an eventful weekend here at the zoo, and I just wanted to fill you all in on what has happened/is happening with Roo! I apologize in advance for how rambling and disjointed this post may be--I am not running on a whole lot of sleep here...!
For about a week now, a virus has been making its way through our house--first with Monkey, then Lamb, and I got a touch of it as well (which I am still fighting off). It starts with a low-grade fever, then turns into a sore throat and headache that lasts a few days. So I wasn't all that surprised when I picked Roo up to put him to bed on Saturday and thought, "Hmmmm, he feels warm." His temp was 100.6, nothing major, but Mr. Fantastic and I decided to keep him home from church the next morning.
I still had to get up and go because I had some obligations yesterday morning, but my wonderful hubby stayed home with all three kids. When I got back home a little after noon, he told me that Roo had been coughing and that his breathing was raspy. Since we knew that it was similar symptoms to our other kids, I wasn't overly worried.
But then Mr. Fantastic had to leave to go to his dad's for a while, and I was trying to get the kids down for naps, and Roo's breathing started to get worse. I put him down for a nap, got the big kids settled (since they were getting over their little bug, everybody had to take a nap), and called the after-hour nurses' hotline. I figured that she would just give me some tips, but I was uncertain about whether I should let it go or get him checked out, since I knew it would likely get worse at night. Well, she wanted to me to check his chest to see if it was retracting when he would breathe, and when I tried to check, it woke him up. The noise that his breathing made while he was trying to cry was... indescribable. Loud and silent at the same time. It was scary, and the nurse could hear him through the phone. She said just to take him straight to Children's Hospital.
Sooooooo... the big kids went to a friend's house, Roo and I headed to the hospital, and Mr. Fantastic met me there. They took us straight back, which was great. He got a breathing treatment, which helped minimally, then a dose of oral steroids. (I need to note here that his breathing was lousy, but he has happy and laughing and flirting with everyone!) They kept him for observation, then decided to do a second breathing treatment, this one a little bit different. And when he was still raspy after that, the ER doc recommended admitting him. Since croup typically gets worse at night, she was concerned that he was going to end up back in the ER if we went home.
After that, it was a lot of "hurry up and wait." It took almost 2 hours for us to get a room, then three or four more people needed to check him out, etc, etc. But in all of the waiting and waiting and waiting, something else happened... he got much MUCH better. I half-jokingly asked our doctor if she really thought we needed to stay there, and she said it was probably best, just in case he got worse once the steroids wore off. In fact, looking over his papers from the day, she said Roo would quite likely need another treatment in the night, and that they may keep him a second night, just to be safe...!
At this point, a lot of things were going on, and I'm going to glaze over some of it... it was getting late, Roo hadn't really had a nap, he hadn't eaten dinner, and he was WAY hyper from the steroids. Doctors and nurses were coming and going, and it kept getting later. We did finally get to feed him around 8:00 (his normal dinner is at 6:00 and bedtime at 7:00ish), and then he was so wound up we had to put him in the crib and put the sides up. He was having a BLAST! :-)
But as it got later... and he wasn't sleeping... and he was doing amazingly well... and we found out it would be almost $2,000 for us just to stay there overnight... we convinced the doctor that we are responsible adults who would bring our child back if we needed to, and she let us go home.
So yes, we came home. It was around 11:00 at night when we left the hospital, and Roo was still crazy hyper--but he fell asleep in less than two minutes oncce we got in the van.
When we got home, Mr. Fantastic determined that he was going to get up every hour and check on Roo. (Isn't is sweet?) But around 12:15 at night, when I was still awake and he was snoring away, I realized that the combination of constant snoring and an alarm going off every hour were not going to be conducive to a good night's sleep for me... so I just went in and slept on the floor of Roo's room. Still not a great night's sleep, but it was better than the alternative at that point.
ANYWAY, he slept GREAT. He sounds a little bit stuffy today, but just like he has a cold--and his breathing is not audible at all. No coughing or hacking in the night, no distressed breathing, nothing. I am so, so grateful that he is doing this much better less than 24 hours after that episode that sent us to the ER.
So there's our update! Thank you so much to everyone who was praying and who e-mailed and checked on us. I know that Roo's fantastic recovery is the result of a lot of prayer.
Now if I could just get some sleep...! But not this morning. Because this morning, you see, is Monkey's "meet the teacher" day at his preschool. I'll keep you posted...
For about a week now, a virus has been making its way through our house--first with Monkey, then Lamb, and I got a touch of it as well (which I am still fighting off). It starts with a low-grade fever, then turns into a sore throat and headache that lasts a few days. So I wasn't all that surprised when I picked Roo up to put him to bed on Saturday and thought, "Hmmmm, he feels warm." His temp was 100.6, nothing major, but Mr. Fantastic and I decided to keep him home from church the next morning.
I still had to get up and go because I had some obligations yesterday morning, but my wonderful hubby stayed home with all three kids. When I got back home a little after noon, he told me that Roo had been coughing and that his breathing was raspy. Since we knew that it was similar symptoms to our other kids, I wasn't overly worried.
But then Mr. Fantastic had to leave to go to his dad's for a while, and I was trying to get the kids down for naps, and Roo's breathing started to get worse. I put him down for a nap, got the big kids settled (since they were getting over their little bug, everybody had to take a nap), and called the after-hour nurses' hotline. I figured that she would just give me some tips, but I was uncertain about whether I should let it go or get him checked out, since I knew it would likely get worse at night. Well, she wanted to me to check his chest to see if it was retracting when he would breathe, and when I tried to check, it woke him up. The noise that his breathing made while he was trying to cry was... indescribable. Loud and silent at the same time. It was scary, and the nurse could hear him through the phone. She said just to take him straight to Children's Hospital.
Sooooooo... the big kids went to a friend's house, Roo and I headed to the hospital, and Mr. Fantastic met me there. They took us straight back, which was great. He got a breathing treatment, which helped minimally, then a dose of oral steroids. (I need to note here that his breathing was lousy, but he has happy and laughing and flirting with everyone!) They kept him for observation, then decided to do a second breathing treatment, this one a little bit different. And when he was still raspy after that, the ER doc recommended admitting him. Since croup typically gets worse at night, she was concerned that he was going to end up back in the ER if we went home.
After that, it was a lot of "hurry up and wait." It took almost 2 hours for us to get a room, then three or four more people needed to check him out, etc, etc. But in all of the waiting and waiting and waiting, something else happened... he got much MUCH better. I half-jokingly asked our doctor if she really thought we needed to stay there, and she said it was probably best, just in case he got worse once the steroids wore off. In fact, looking over his papers from the day, she said Roo would quite likely need another treatment in the night, and that they may keep him a second night, just to be safe...!
At this point, a lot of things were going on, and I'm going to glaze over some of it... it was getting late, Roo hadn't really had a nap, he hadn't eaten dinner, and he was WAY hyper from the steroids. Doctors and nurses were coming and going, and it kept getting later. We did finally get to feed him around 8:00 (his normal dinner is at 6:00 and bedtime at 7:00ish), and then he was so wound up we had to put him in the crib and put the sides up. He was having a BLAST! :-)
But as it got later... and he wasn't sleeping... and he was doing amazingly well... and we found out it would be almost $2,000 for us just to stay there overnight... we convinced the doctor that we are responsible adults who would bring our child back if we needed to, and she let us go home.
So yes, we came home. It was around 11:00 at night when we left the hospital, and Roo was still crazy hyper--but he fell asleep in less than two minutes oncce we got in the van.
When we got home, Mr. Fantastic determined that he was going to get up every hour and check on Roo. (Isn't is sweet?) But around 12:15 at night, when I was still awake and he was snoring away, I realized that the combination of constant snoring and an alarm going off every hour were not going to be conducive to a good night's sleep for me... so I just went in and slept on the floor of Roo's room. Still not a great night's sleep, but it was better than the alternative at that point.
ANYWAY, he slept GREAT. He sounds a little bit stuffy today, but just like he has a cold--and his breathing is not audible at all. No coughing or hacking in the night, no distressed breathing, nothing. I am so, so grateful that he is doing this much better less than 24 hours after that episode that sent us to the ER.
So there's our update! Thank you so much to everyone who was praying and who e-mailed and checked on us. I know that Roo's fantastic recovery is the result of a lot of prayer.
Now if I could just get some sleep...! But not this morning. Because this morning, you see, is Monkey's "meet the teacher" day at his preschool. I'll keep you posted...
Thursday, October 13, 2011
Winner, Winner, Chicken Dinner!
OK, so nobody actually gets a chicken dinner. Unless you can somehow buy one from Amazon--and would be so inclined, which I can't say I would recommend.
Moving on. Thank you all for helping me to make Down Syndrome Awareness Month a success. I have more great posts coming, so stay tuned and keep sharing! :-) For today, though, I have used random.org to select two winners for the giveaway.
The winner of the $25 Amazon gift card was comment #2 -
Weed said... I "like" you on facebook.
And the winner of the $25 Starbucks gift card was comment #12 -
Becca said... Just found your blog randomly and "Followed" it before I finished reading your post about the giveaway! Perfect timing. :-)
Congratulations!! I will be putting those cards in the mail tomorrow--or as soon as I get your contact info. :-)
Thanks again to all of you. I love getting to share Roo and my other wild animals with you! :-)
Moving on. Thank you all for helping me to make Down Syndrome Awareness Month a success. I have more great posts coming, so stay tuned and keep sharing! :-) For today, though, I have used random.org to select two winners for the giveaway.
The winner of the $25 Amazon gift card was comment #2 -
Weed said... I "like" you on facebook.
And the winner of the $25 Starbucks gift card was comment #12 -
Becca said... Just found your blog randomly and "Followed" it before I finished reading your post about the giveaway! Perfect timing. :-)
Congratulations!! I will be putting those cards in the mail tomorrow--or as soon as I get your contact info. :-)
Thanks again to all of you. I love getting to share Roo and my other wild animals with you! :-)
Wednesday, October 12, 2011
Reflections on a sick day
I’m not sick. Monkey is. We had a perfectly great play date yesterday with some of our favorite buddies (Thanks, Megan & boys!), had a nice quiet evening at home, and everyone (well, everyone under the age of 7) was in bed before 7:30. Victory!!! That is, until 11:30 that night, when Monkey ran crying into our room. :-( He had a teeny bit of a fever, and a whole lot of headache. He also had a cough, but only when he was upset or moving around. I had noticed before bed that his voice sounded a little raspy, but he was feeling fine so I didn’t mention it.
So I got to spend the next 3 hours enjoying some quality time, snuggling my little guy and watching “The Muppet Show”. Yes, THE Muppet Show—the one that I watched as a kid, although even then it must have been reruns, because according to Wikipedia (What? What else am I going to do while watching “The Muppet Show” at 1 in the morning???) it ran from 1976 to 1981. Maybe that explains why I never knew the celebrity guest hosts.
Anyway, I finally got Monkey back to bed around 2 AM, and he slept until almost 9:30, which is hugely late for him. If it weren’t for a snoring hubby and a baby that woke up crying at 3:30, I would have been able to get a decent chunk of sleep from 2 until 7, when Lamb gets up for school.
Monkey is acting fine today, although his voice is still a little foggy. Unfortunately, today was supposed to be our big “date day”—my parents were going to keep Roo for the day while Monkey and I went out and celebrated the start of his preschool next week. (Yes, it’s a late start.) Instead, we’re spending the day at home. But you know what? Some days I am absolutely itching to get out of this house… today I was so thankful to throw on my sweats and know that I wouldn’t be setting foot outside. It is cold (after a nice Indian summer) and rainy and the perfect day for relaxing at home.
So all that to say, I have had several littlesleep-deprived deep and introspective reflections throughout the day. The first was that I need to take a break from my personal Facebook account (I will still be posting at Diary of a Zookeeper). I have been thinking about it for a while, and now is as good of a time as any, so TTFN, Facebook. But that means that I could not share my rantings pointless wonderings babbling stream of consciousness keen insights with my tens of Facebook friends… so to preserve them for posterity, I will share them here with you now.
• What could possibly be better than a peanut butter, banana, honey, and cinnamon sandwich? A Nutella, banana, honey, and cinnamon sandwich, of course!
• When I plan to be away from the house all day (and thus, not getting any work done), I don’t feel nearly as guilty about not getting housework done when my plans change and I am home for the day. I am actually able to enjoy decorating for fall, reading, watching TV with my boys, etc.
• I don’t know if one can necessarily call it “decorating for fall” when said decorations are 3 candles, a welcome mat, and some gourds. (OK, there might be a little more to it than that, but seriously… not much more.)
• I really hope that Oreo will come out of Roo’s super-cute brand-new outfit that I for some reason chose to put on him on a day when we’re not leaving the house. In retrospect, a bib may have been a good option. Or just stripping him naked. Or maybe I just shouldn’t have Oreos in the house.
• I’m not sure why I waited until I was 32 to read Gone with the Wind. I’m pretty sure that should be a punishable offense. It is fascinating.
• “The Muppet Show” theme song can get a surprisingly strong grip on your brain after a while…
• By this time last year, Lamb had already missed multiple days of school. Even though I miss her when she’s at school each day, I am so glad to report that she has not missed a single day yet this year.
• I have surprised myself at my own hesitancy every time someone asks me if I would go back to Africa. But the truth is, my hesitation is only because I realized on that trip how small I am and how many better-qualified missionaries are out there. I would love to go back—I just worry that it would keep someone better from getting the chance.
• “It’s time to start the music. It’s time to light the lights. It’s time to get things started on The Muppet Show tonight!” I told you, it’s a strong grip…
• I want to have a Halloween party—just a small one with a few of my kids’ friends. I’m pretty sure it’s too late to throw one together.
• I also want to have a great big party with all of our friends. I’m certain that we don’t have time to throw that together.
• I think I’ll just bake some brownies instead.
Gosh, I bet Facebook is really missing me now. That’s right, Facebook! See what you could be experiencing with me? Oh snap.
Oh, and if you happen to still be reading this, please remember that tonight is the last night to enter to win—really! The contest for a $25 Starbucks and a $25 Amazon gift card (I will draw two names—each will get one gift card) ends at midnight! If you have completed any entries but haven’t posted a comment, make sure to do so. And if you have a friend who could use a caffeine fix or some mini-retail therapy online, please share this with them—they can enter to win, too! Just follow the directions on the “Awareness” post.
See you all tomorrow, when I’ll announce the winners!
So I got to spend the next 3 hours enjoying some quality time, snuggling my little guy and watching “The Muppet Show”. Yes, THE Muppet Show—the one that I watched as a kid, although even then it must have been reruns, because according to Wikipedia (What? What else am I going to do while watching “The Muppet Show” at 1 in the morning???) it ran from 1976 to 1981. Maybe that explains why I never knew the celebrity guest hosts.
Anyway, I finally got Monkey back to bed around 2 AM, and he slept until almost 9:30, which is hugely late for him. If it weren’t for a snoring hubby and a baby that woke up crying at 3:30, I would have been able to get a decent chunk of sleep from 2 until 7, when Lamb gets up for school.
Monkey is acting fine today, although his voice is still a little foggy. Unfortunately, today was supposed to be our big “date day”—my parents were going to keep Roo for the day while Monkey and I went out and celebrated the start of his preschool next week. (Yes, it’s a late start.) Instead, we’re spending the day at home. But you know what? Some days I am absolutely itching to get out of this house… today I was so thankful to throw on my sweats and know that I wouldn’t be setting foot outside. It is cold (after a nice Indian summer) and rainy and the perfect day for relaxing at home.
So all that to say, I have had several little
• What could possibly be better than a peanut butter, banana, honey, and cinnamon sandwich? A Nutella, banana, honey, and cinnamon sandwich, of course!
• When I plan to be away from the house all day (and thus, not getting any work done), I don’t feel nearly as guilty about not getting housework done when my plans change and I am home for the day. I am actually able to enjoy decorating for fall, reading, watching TV with my boys, etc.
• I don’t know if one can necessarily call it “decorating for fall” when said decorations are 3 candles, a welcome mat, and some gourds. (OK, there might be a little more to it than that, but seriously… not much more.)
• I really hope that Oreo will come out of Roo’s super-cute brand-new outfit that I for some reason chose to put on him on a day when we’re not leaving the house. In retrospect, a bib may have been a good option. Or just stripping him naked. Or maybe I just shouldn’t have Oreos in the house.
• I’m not sure why I waited until I was 32 to read Gone with the Wind. I’m pretty sure that should be a punishable offense. It is fascinating.
• “The Muppet Show” theme song can get a surprisingly strong grip on your brain after a while…
• By this time last year, Lamb had already missed multiple days of school. Even though I miss her when she’s at school each day, I am so glad to report that she has not missed a single day yet this year.
• I have surprised myself at my own hesitancy every time someone asks me if I would go back to Africa. But the truth is, my hesitation is only because I realized on that trip how small I am and how many better-qualified missionaries are out there. I would love to go back—I just worry that it would keep someone better from getting the chance.
• “It’s time to start the music. It’s time to light the lights. It’s time to get things started on The Muppet Show tonight!” I told you, it’s a strong grip…
• I want to have a Halloween party—just a small one with a few of my kids’ friends. I’m pretty sure it’s too late to throw one together.
• I also want to have a great big party with all of our friends. I’m certain that we don’t have time to throw that together.
• I think I’ll just bake some brownies instead.
Gosh, I bet Facebook is really missing me now. That’s right, Facebook! See what you could be experiencing with me? Oh snap.
Oh, and if you happen to still be reading this, please remember that tonight is the last night to enter to win—really! The contest for a $25 Starbucks and a $25 Amazon gift card (I will draw two names—each will get one gift card) ends at midnight! If you have completed any entries but haven’t posted a comment, make sure to do so. And if you have a friend who could use a caffeine fix or some mini-retail therapy online, please share this with them—they can enter to win, too! Just follow the directions on the “Awareness” post.
See you all tomorrow, when I’ll announce the winners!
Monday, October 10, 2011
Spreading the Joy...
This morning I am over at Zehlahlum Family, making more people aware of Down syndrome, thanks to Jamey. Check out the new post--and while you're there, stay for a while and get to know Jamey and her beautiful family a little bit better. Jamey has posted here before and I've sent you over there before, so many of you already familiar with her--and if not, why not? Don't you listen to anything I say??? Jamey and her husband have three amazing children, one of whom they adopted from Ethiopia around the same time that Roo was born. I think we both feel a special connection to each other in our so similiar, yet so different journeys. :-)
So go read what I had to say over at Jamey's blog, then come back and enter for more chances to win! Remember, the deadline is 11:59 PM on Wednesday, October 12.
So go read what I had to say over at Jamey's blog, then come back and enter for more chances to win! Remember, the deadline is 11:59 PM on Wednesday, October 12.
Sunday, October 9, 2011
Don't hate me...
I know that tonight is the deadline for the giveaway. And I know I just Facebooked about it being the last day for the giveaway. But I'd like to make a slight change.
My awesome friend Jamey from Zehlahlum Family asked me if I would like to write a guest post for Down Syndrome Awareness Month. (I told you... she's awesome.) And given that I am just absolutely certain that her millions of readers will flock right over here to the zoo so that they can see as many pictures of Roo as possible... and given that I am sure that many of them are Starbucks visitors... and given that I think they love Amazon as much as you and I do... I would like to extend the deadline just a teeeeeeny bit. Don't hate me, 'k? 'Cause if you do, I'll spit on your gift card before I send it.
Seriously, here's the deal... My guest post is going up tomorrow, so I would like to extend the deadline until Wednesday night at 11:59 PM, and I'll post the winners on Thursday morning. If you would like to get some more entries, go to the Awareness post to see how to earn them and to post your comments.
Thanks for your patience. :-) And as an added bonus, here is Roo doing his latest trick...
My awesome friend Jamey from Zehlahlum Family asked me if I would like to write a guest post for Down Syndrome Awareness Month. (I told you... she's awesome.) And given that I am just absolutely certain that her millions of readers will flock right over here to the zoo so that they can see as many pictures of Roo as possible... and given that I am sure that many of them are Starbucks visitors... and given that I think they love Amazon as much as you and I do... I would like to extend the deadline just a teeeeeeny bit. Don't hate me, 'k? 'Cause if you do, I'll spit on your gift card before I send it.
Seriously, here's the deal... My guest post is going up tomorrow, so I would like to extend the deadline until Wednesday night at 11:59 PM, and I'll post the winners on Thursday morning. If you would like to get some more entries, go to the Awareness post to see how to earn them and to post your comments.
Thanks for your patience. :-) And as an added bonus, here is Roo doing his latest trick...
...and here's another one of him just plain looking adorable...
Have a great night! And check back soon! :-)
Wednesday, October 5, 2011
Words
I am a pretty laid back kinda girl. When you ask me what I want to do for the evening, I'll typically say, "I'm up for anything." When you ask me where I want to eat, I'll say, "Whatever sounds good to you!" I like to go with the flow. I don't think of myself as being pushy or having my own agenda.
I also think I'm pretty laid back when it comes to words. Throughout my life, I've had lots of experience with the things-people-say-with-good-intentions-that-come-out-all-wrong types of things, and I've learned to let them roll off my back. That can be hard, because I honestly don't have a very thick skin, but I've learned to give people the benefit of the doubt.
It wasn't until after Roo was born that I realized what a big push is out there to end the use of the "R-word"--retarded. To be honest, I hadn't thought much about the word at all, mainly because it just wasn't a part of my vocabulary... but I also wasn't ready to jump on the bandwagon. Before you send me nasty e-mails about how I'll feel when someone calls my son that word, please let me explain. I absolutely think that people use that word to tear others down and that is terrible and sad--but is the problem really with the word? Or is it with the attitudes of the people using it? My feeling was--and still is, to a degree--if we "forbid" people to use this word, they'll just replace it with another.
Do you know what's really sad to me about that? I was originally going to write that kids use that word to tear others down, and then I realized that it's not limited to kids.
And over the past year, I've heard lots of stories of how offended people have been by this word--some very rightfully so, others (in my humble opinion) maybe went just a teeny bit over-the-top in their reaction. But I've come to realize... as I've listened to their stories... as I've heard acquaintances use it in casual conversation... as I've overheard it in public places... that it's just not a nice word. Period.
Have I stormed out of the room when someone used the word to refer to their phone? No. Have I kicked someone out of my house for mumbling it after a bad football play? No. Would I prefer that people think twice and come up with a more intelligent way of expressing themselves? You better believe it.
Why? Because someday, chances are somebody mean is going to use that word to hurt my son. And someday after that, he might hear someone else--someone he loves and respects--use that same word to vent frustration over their broken DVD player. And I don't want him to think, "You mean you're angry at that thing because it's like me. It's bad, like me. It's worthless, like me."
It's not a nice word. And yes, mean people will come up with other ways to be mean. But nice people who use the word without thinking... those people will understand. Those people can be taught that, even though it doesn't seem like a big deal to them, it's a big deal to someone else. And they have hundreds of other words to choose from to describe their thoughts and feelings. And they will.
So tonight, I'm spreading the word. Let's end the word.
And if I didn't convince you, maybe this will:
This video was made by a girl whose brother has Down's and Autism. She is awesome. I hope Lamb grows up to be like her.
It's Down Syndrome Awareness Month. Help me spread the word.
I also think I'm pretty laid back when it comes to words. Throughout my life, I've had lots of experience with the things-people-say-with-good-intentions-that-come-out-all-wrong types of things, and I've learned to let them roll off my back. That can be hard, because I honestly don't have a very thick skin, but I've learned to give people the benefit of the doubt.
It wasn't until after Roo was born that I realized what a big push is out there to end the use of the "R-word"--retarded. To be honest, I hadn't thought much about the word at all, mainly because it just wasn't a part of my vocabulary... but I also wasn't ready to jump on the bandwagon. Before you send me nasty e-mails about how I'll feel when someone calls my son that word, please let me explain. I absolutely think that people use that word to tear others down and that is terrible and sad--but is the problem really with the word? Or is it with the attitudes of the people using it? My feeling was--and still is, to a degree--if we "forbid" people to use this word, they'll just replace it with another.
Do you know what's really sad to me about that? I was originally going to write that kids use that word to tear others down, and then I realized that it's not limited to kids.
And over the past year, I've heard lots of stories of how offended people have been by this word--some very rightfully so, others (in my humble opinion) maybe went just a teeny bit over-the-top in their reaction. But I've come to realize... as I've listened to their stories... as I've heard acquaintances use it in casual conversation... as I've overheard it in public places... that it's just not a nice word. Period.
Have I stormed out of the room when someone used the word to refer to their phone? No. Have I kicked someone out of my house for mumbling it after a bad football play? No. Would I prefer that people think twice and come up with a more intelligent way of expressing themselves? You better believe it.
Why? Because someday, chances are somebody mean is going to use that word to hurt my son. And someday after that, he might hear someone else--someone he loves and respects--use that same word to vent frustration over their broken DVD player. And I don't want him to think, "You mean you're angry at that thing because it's like me. It's bad, like me. It's worthless, like me."
It's not a nice word. And yes, mean people will come up with other ways to be mean. But nice people who use the word without thinking... those people will understand. Those people can be taught that, even though it doesn't seem like a big deal to them, it's a big deal to someone else. And they have hundreds of other words to choose from to describe their thoughts and feelings. And they will.
So tonight, I'm spreading the word. Let's end the word.
And if I didn't convince you, maybe this will:
This video was made by a girl whose brother has Down's and Autism. She is awesome. I hope Lamb grows up to be like her.
It's Down Syndrome Awareness Month. Help me spread the word.
Monday, October 3, 2011
Awareness
I don't think it's a secret to anyone here that we were quite shocked when we found out that Roo has Down's. Shocked isn't even the word, really, but it's as close as I can come.
I don't know if that news would ever be easy to hear, but I do think it could have been easier if our circumstances had been a little bit different. There are so many things that could have made a difference that day.
I wish...
...that I had known someone else with Down's before Roo. My exposure to people with any kind of delay is so limited, and it is quite honestly something I have always feared. I have vague memories of a boy in elementary school--he didn't have Down's, but some kind of developmental delay that caused him to be in a special education classroom. I remember avoiding him, laughing at him (though never to his face), and the confused and slightly hurt look in his eyes when other kids didn't want to play with him--but he always remained so upbeat and positive. I wish I had gotten to know him.
...I had seen pictures of the beautiful babies, the adorable children, the handsome adults who have Down syndrome.
...someone had told me what people with Down syndrome can accomplish.
...I had realized what JOY can come from celebrating each little milestone.
...I had understood that my initial feelings were normal. It's OK to be sad--heartbroken--to grieve the loss of the child I thought I lost.
...I had known that the child I have is a million times better than the child I thought I lost.
...I had realized just how many children like Roo never get to experience life. In the US, around 90% (85% - 95%, depending on what study you read) of babies who are diagnosed with Down syndrome in utero are aborted.
...I had been aware of Reece's Rainbow, and known how much children around with world with Down's are longing for someone to love them.
...I had been prepared for the medical issues we might face, so they weren't all so scary.
...I had realized that it isn't any different to play with or babysit a child with Down's just because they have Down's. (Yes, some children have other medical conditions that complicate things, but I wouldn't have known that. I would have been terrified to offer to watch someone else's child with Down syndrome.)
...I had known another family who had been touched by Down's. I wish I could have really experienced life with them and seen how wonderful it could be, instead of passing a parent who had a child with special needs and sadly thinking, "That poor mom. I don't know how she does it."
...I had understood the feelings and sensitivities of parents who have a child with Down syndrome. I hope I've never inadvertently said something to offend one.
...that someone had told me that Down syndrome is not a death sentence.
...that I had realized just how amazing this journey would be.
October is Down Syndrome Awareness Month. And you know what? I wish I had been more aware before Roo was born. Now it's my duty--my privilege--to help others know what I never did. And you can help me.
Some of you know firsthand about raising a child with Down syndrome, some of you know what it is to have a sibling or friend with Down's, many of you who are reading this know what it's like to have a friend whose beautiful baby boy Roo has Down syndrome. ;-) But all of you know others who are just like I was 2 years ago--unaware. Unaware of the struggles, ignorant of the joys, oblivious to the beautiful faces.
This month, will you help me to make them aware? Will you encourage them to know Roo?
So let's make this fun. I will offer up 2 $25 gift certificates--one to Starbucks, and one to Amazon--one each to two lucky readers. Here are the ways to enter:
The contest will end at midnight on Sunday, October 9. I will randomly pick 2 comments on Monday and contact/post the winners that day.
I wish I had been more aware. I am so grateful to you for making yourself more aware, and for spreading the word. I can't promise to post every day this month, because we all know that isn't likely to happen, but I do plan to make a concentrated effort to raise awareness through this blog throughout the month of October. Thanks for being part of that.
I don't know if that news would ever be easy to hear, but I do think it could have been easier if our circumstances had been a little bit different. There are so many things that could have made a difference that day.
I wish...
...that I had known someone else with Down's before Roo. My exposure to people with any kind of delay is so limited, and it is quite honestly something I have always feared. I have vague memories of a boy in elementary school--he didn't have Down's, but some kind of developmental delay that caused him to be in a special education classroom. I remember avoiding him, laughing at him (though never to his face), and the confused and slightly hurt look in his eyes when other kids didn't want to play with him--but he always remained so upbeat and positive. I wish I had gotten to know him.
...I had seen pictures of the beautiful babies, the adorable children, the handsome adults who have Down syndrome.
...someone had told me what people with Down syndrome can accomplish.
...I had realized what JOY can come from celebrating each little milestone.
...I had understood that my initial feelings were normal. It's OK to be sad--heartbroken--to grieve the loss of the child I thought I lost.
...I had known that the child I have is a million times better than the child I thought I lost.
...I had realized just how many children like Roo never get to experience life. In the US, around 90% (85% - 95%, depending on what study you read) of babies who are diagnosed with Down syndrome in utero are aborted.
...I had been aware of Reece's Rainbow, and known how much children around with world with Down's are longing for someone to love them.
...I had been prepared for the medical issues we might face, so they weren't all so scary.
...I had realized that it isn't any different to play with or babysit a child with Down's just because they have Down's. (Yes, some children have other medical conditions that complicate things, but I wouldn't have known that. I would have been terrified to offer to watch someone else's child with Down syndrome.)
...I had known another family who had been touched by Down's. I wish I could have really experienced life with them and seen how wonderful it could be, instead of passing a parent who had a child with special needs and sadly thinking, "That poor mom. I don't know how she does it."
...I had understood the feelings and sensitivities of parents who have a child with Down syndrome. I hope I've never inadvertently said something to offend one.
...that someone had told me that Down syndrome is not a death sentence.
...that I had realized just how amazing this journey would be.
October is Down Syndrome Awareness Month. And you know what? I wish I had been more aware before Roo was born. Now it's my duty--my privilege--to help others know what I never did. And you can help me.
Some of you know firsthand about raising a child with Down syndrome, some of you know what it is to have a sibling or friend with Down's, many of you who are reading this know what it's like to have a friend whose beautiful baby boy Roo has Down syndrome. ;-) But all of you know others who are just like I was 2 years ago--unaware. Unaware of the struggles, ignorant of the joys, oblivious to the beautiful faces.
This month, will you help me to make them aware? Will you encourage them to know Roo?
So let's make this fun. I will offer up 2 $25 gift certificates--one to Starbucks, and one to Amazon--one each to two lucky readers. Here are the ways to enter:
- Become a follower of this blog
- "Like" Diary of a Zookeeper on Facebook (the link is on the right-hand side of the page)
- Share this blog on Facebook, Twitter, your blog, or other social media (one entry for each, one time per day)
- Share the Reece's Rainbow site, or a specific child who touches your heart, on Facebook, Twitter, your blog, or other social media (one entry for each, one time per day)
The contest will end at midnight on Sunday, October 9. I will randomly pick 2 comments on Monday and contact/post the winners that day.
I wish I had been more aware. I am so grateful to you for making yourself more aware, and for spreading the word. I can't promise to post every day this month, because we all know that isn't likely to happen, but I do plan to make a concentrated effort to raise awareness through this blog throughout the month of October. Thanks for being part of that.
Subscribe to:
Posts (Atom)