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.
Showing posts with label Down syndrome awareness month. Show all posts
Showing posts with label Down syndrome awareness month. Show all posts
Tuesday, October 18, 2011
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.
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