Saturday, May 7, 2011
Sunday, April 24, 2011
Enough Kids?
People that we are close to expressed their displeasure recently at our desire to adopt. "Don't you think you have enough kids?!"
This would be my response if I thought they would hear me:
It's not about a desire to have more kids. We have seven. By most people's standards, that's a lot. Often, we even think it's a lot, but usually, it just seems normal. We are imperfect people and an imperfect family. There are times when I think we've got it goin' on...and times when I feel like we're the Beverly Hillbillies. But when I look closely, I can see God's design.
There are an estimated 147 million orphans in the world, today. That number is too big to wrap my brain around, so I look at individual children that I'm aware of that have nobody. I look at the pictures on Reece's Rainbow and imagine what those kids are like. Who delights in them? Who encourages and challenges them? Who loves them?
No one.
I imagine them living the life they've always known, in the same groupa with the same caregivers, playing with the same toys (if there are any), looking at the same walls...when, suddenly, at the age of five, they are jerked from that environment...ripped away from all they've ever known...and taken to a dark and scary place. There, they are tied to a bed or crib and left alone. I imagine their tears (which are ignored) and the noises which leave them terrified. Screams, moans, cries, and profanity assault their innocent ears. Most of them die within the first year.
And I think of my children.
If you asked them, they would tell you they have a rough life. They don't have the electronic gadgets many of their friends do. They are forced to share a room with siblings. Most of their clothing is second-hand. I lose my patience and yell, sometimes. (Okay, maybe a lot). They are required to do chores and take care of each other. Their younger siblings break their stuff.
They are blessed.
Quite simply, we believe we have something to offer the orphan. A small home, an imperfect family, siblings to play and fight with, parents to delight in them (and yell at them, from time to time), and the love of their Heavenly Father.
We are under no illusion that it will be easy. We don't expect our future children to show us any gratitude for being rescued any more than our current children do for not having to be. Children are generally selfish, messy, loud, and exhausting. Kids who were raised in orphanages come with emotional baggage, usually expressed behaviorally. Parenting is seldom easy, no matter where you get your kids.
Do we have unrealistic expectations about what it will be like? I'm certain that we do. We sure did when we were expecting our first, when we added a second, and when we set out to have a large family. No one can adequately prepare you for the future.
I believe that's where grace comes in to play. God promises to be our strength in weakness. He tells us that He has given us all we need for life and godliness. He assures us that His grace is sufficient. I imagine it will be. It is now.
I didn't know about the fate of children punished for simply having an extra chromosome before we had Eon. I do now. I cannot pretend I don't. I believe that would grieve the heart of my Father. He is a champion of the weak. "Let the little children come to me," He said. He called caring for orphans "pure and undefiled religion," and He likens caring for "the least of these" as caring for Himself.
"Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done." Prov. 24:11, 12 NLT
We are not in a position to adopt, at this time. We don't meet the minimum income requirements for our family size. That's a hard pill for me to swallow, sometimes, but I believe God's timing is perfect. Until then, our hearts are willing. We advocate for orphans and support the adoptions of others. And we pray....oh, how we pray...that the precious children waiting will find their way home.
This would be my response if I thought they would hear me:
It's not about a desire to have more kids. We have seven. By most people's standards, that's a lot. Often, we even think it's a lot, but usually, it just seems normal. We are imperfect people and an imperfect family. There are times when I think we've got it goin' on...and times when I feel like we're the Beverly Hillbillies. But when I look closely, I can see God's design.
There are an estimated 147 million orphans in the world, today. That number is too big to wrap my brain around, so I look at individual children that I'm aware of that have nobody. I look at the pictures on Reece's Rainbow and imagine what those kids are like. Who delights in them? Who encourages and challenges them? Who loves them?
No one.
I imagine them living the life they've always known, in the same groupa with the same caregivers, playing with the same toys (if there are any), looking at the same walls...when, suddenly, at the age of five, they are jerked from that environment...ripped away from all they've ever known...and taken to a dark and scary place. There, they are tied to a bed or crib and left alone. I imagine their tears (which are ignored) and the noises which leave them terrified. Screams, moans, cries, and profanity assault their innocent ears. Most of them die within the first year.
And I think of my children.
If you asked them, they would tell you they have a rough life. They don't have the electronic gadgets many of their friends do. They are forced to share a room with siblings. Most of their clothing is second-hand. I lose my patience and yell, sometimes. (Okay, maybe a lot). They are required to do chores and take care of each other. Their younger siblings break their stuff.
They are blessed.
Quite simply, we believe we have something to offer the orphan. A small home, an imperfect family, siblings to play and fight with, parents to delight in them (and yell at them, from time to time), and the love of their Heavenly Father.
We are under no illusion that it will be easy. We don't expect our future children to show us any gratitude for being rescued any more than our current children do for not having to be. Children are generally selfish, messy, loud, and exhausting. Kids who were raised in orphanages come with emotional baggage, usually expressed behaviorally. Parenting is seldom easy, no matter where you get your kids.
Do we have unrealistic expectations about what it will be like? I'm certain that we do. We sure did when we were expecting our first, when we added a second, and when we set out to have a large family. No one can adequately prepare you for the future.
I believe that's where grace comes in to play. God promises to be our strength in weakness. He tells us that He has given us all we need for life and godliness. He assures us that His grace is sufficient. I imagine it will be. It is now.
I didn't know about the fate of children punished for simply having an extra chromosome before we had Eon. I do now. I cannot pretend I don't. I believe that would grieve the heart of my Father. He is a champion of the weak. "Let the little children come to me," He said. He called caring for orphans "pure and undefiled religion," and He likens caring for "the least of these" as caring for Himself.
"Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done." Prov. 24:11, 12 NLT
We are not in a position to adopt, at this time. We don't meet the minimum income requirements for our family size. That's a hard pill for me to swallow, sometimes, but I believe God's timing is perfect. Until then, our hearts are willing. We advocate for orphans and support the adoptions of others. And we pray....oh, how we pray...that the precious children waiting will find their way home.
Tuesday, April 12, 2011
Back Home Again, In Indiana*
When Eon was born, I received numerous copies of the essay, "Welcome to Holland." Although, I didn't agree with everything in it at the time, I thought it was a good enough analogy for what we were experiencing. I've since learned that some of my fellow moms in the Down syndrome community really loathe that essay and some really love it.
My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.
Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time.
If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.
Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.
But I don't live there, anymore.
Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are.
Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc. Everyone's needs are special to them and, because they're my kids, they're special to me.
Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.
I love Holland, but there is just no place like home!
*Back Home Again, In Indiana is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.
My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.
Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time.
If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.
Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.
But I don't live there, anymore.
Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are.
Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc. Everyone's needs are special to them and, because they're my kids, they're special to me.
Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.
I love Holland, but there is just no place like home!
*Back Home Again, In Indiana is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.
Sunday, March 13, 2011
Suffering
"I just couldn't let my child suffer." That line is used a lot to justify terminating a pregnancy for Down syndrome. Those of us parenting a child with Down syndrome would be quick to dispel the myth of "suffering" when it comes to our kids.
But, in thinking about the last week, I realized Eon really does suffer, at least in his mind.
He suffers every time he gets a flick on the hand for plucking the pacifier out of his baby sister's mouth. He suffers everyday around 2:00 when he is laid down for his afternoon nap. He suffers when his mean old mom hands him a cup of milk and he wanted juice instead, or when she makes him get down when he's standing on the dining room table, or when he walks into the bathroom signing "bath" and no one will give him one. If his response is any indication, he suffers every time someone has the audacity to go against his will.
He's enduring all this suffering, not because he has Down syndrome, but because he's two. And he's really, really good at it.
The dictionary defines "suffer" as: to undergo or feel pain or distress. While most of the above wouldn't qualify as pain, judging from his reaction, there is no small amount of distress.
We, his parents, learned a few kids ago that causing a two-year-old some distress by not letting him get his way all the time will save him (and us) from more severe distress in the future. So, yeah, Eon's going to suffer. We expect him to grow into a mature, responsible adult, just like we do his siblings.
I wonder about those parents who would choose death over suffering for their children. Who has ever escaped pain or distress in this life? Who's to say that escaping them is desirable or the best outcome?
Well, besides a two-year-old, of course. ;-)
But, in thinking about the last week, I realized Eon really does suffer, at least in his mind.
He suffers every time he gets a flick on the hand for plucking the pacifier out of his baby sister's mouth. He suffers everyday around 2:00 when he is laid down for his afternoon nap. He suffers when his mean old mom hands him a cup of milk and he wanted juice instead, or when she makes him get down when he's standing on the dining room table, or when he walks into the bathroom signing "bath" and no one will give him one. If his response is any indication, he suffers every time someone has the audacity to go against his will.
He's enduring all this suffering, not because he has Down syndrome, but because he's two. And he's really, really good at it.
The dictionary defines "suffer" as: to undergo or feel pain or distress. While most of the above wouldn't qualify as pain, judging from his reaction, there is no small amount of distress.
We, his parents, learned a few kids ago that causing a two-year-old some distress by not letting him get his way all the time will save him (and us) from more severe distress in the future. So, yeah, Eon's going to suffer. We expect him to grow into a mature, responsible adult, just like we do his siblings.
I wonder about those parents who would choose death over suffering for their children. Who has ever escaped pain or distress in this life? Who's to say that escaping them is desirable or the best outcome?
Well, besides a two-year-old, of course. ;-)
Wednesday, March 9, 2011
I got my baby back, baby back, baby back!
This poor, neglected blog. Sigh. It's not just the blog, it's facebook, and babycenter, too. I needed to unplug for awhile to devote my attention to real life stuff. I hate when life gets in the way of my socializing!
February was a rough month for Eon. I'm not sure what was going on with him. He started waking up at night, every night, and was just kind of whiny and demanding. Basically, he acted like a 2yo and he's really good at it! More concerning to me was that he seemed to have gone backwards with communication. He lost most of the signs he was consistently using and almost all of the words he used, too. It was disheartening. Every sign he even attempted to imitate looked exactly like "stop".
In the last few days, he's started sleeping all night, seems more engaged and happy, and more importantly, has begun signing again....imitation and spontaneous! I have no idea what was going on with him, but I feel like he's back and I am beyond blessed!
February was a rough month for Eon. I'm not sure what was going on with him. He started waking up at night, every night, and was just kind of whiny and demanding. Basically, he acted like a 2yo and he's really good at it! More concerning to me was that he seemed to have gone backwards with communication. He lost most of the signs he was consistently using and almost all of the words he used, too. It was disheartening. Every sign he even attempted to imitate looked exactly like "stop".
In the last few days, he's started sleeping all night, seems more engaged and happy, and more importantly, has begun signing again....imitation and spontaneous! I have no idea what was going on with him, but I feel like he's back and I am beyond blessed!
Saturday, February 12, 2011
So what did you do this week?
I just spent several days in the hospital after my large kidney stone - remember the one from my recent pregnancy? - decided to rear its ugly head. I was sitting in my beginning crochet class on my birthday (gift from my awesome husband) when the familiar pain about took my breath away. I thought it would eventually recede back into the kidney like it did before and was determined to outlast it. I threw in the towel 12 hours later and headed to the ER. Kidney stones hurt!
After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.
In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.
The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?"
And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it.
When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.
But it made me think.
It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.
What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!
Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap. They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.
Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.
So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.
And it's not good enough.
Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?
After receiving pain meds (ahhhhhhh) and a stent to allow for good urine flow, I was sent home. The next day, I awoke with a fever which kept climbing until it was above the "call the office if you develop a fever greater than 101F". Mine was 102.7. They sent me to the ER, where we waited for 3 1/2 hours before being called back to see a doctor. After giving me more pain meds (ahhhhh) and fluids, they decided to admit me.
In 2008, I had similar kidney stone experience. I had a lithotripsy (shock to the kidney to break up the stone), received a terribly uncomfortable stent, and (long story short) ended up in the hospital with candida sepsis and almost died.
The morning after my recent admission, in walks my urologist who cared for me during my last debacle (much of which was the fault of one of his partners). He walked in and said, "I thought it was you! How many kids do you have, now?"
And then I remembered: He was just in awe of the fact that we had 5 kids at the time. He talked about it every time he saw me. He could not imagine how we afforded all those kids and how we handled them. He asked tons of questions about it.
When I told him we now have seven, he was, of course, incredulous. He asked the same questions all over again and I laughed. I responded like I always did.
But it made me think.
It's obvious he doesn't know many moms of large families. The few times he's seen me, I've been at my worst, in a medical crisis. I looked awful...exhausted, stressed, sick. I'm sure any other moms of many he sees in his medical practice look the same because of when he sees them.
What if he decides from those encounters that moms of many have a poor quality of life and must suffer a great deal? They are exhausted, stressed, and sick. What if, when he saw my husband who looked stressed, as well, he deduced that I'm a burden to my family? I'm now someone who's in and out of the hospital. He's never seen me laugh with my kids, or hang out with my friends, or date my husband, or enjoy my job, or any of the things that make my life great!
Maybe it's a bit far fetched (or maybe not...he was really focused on our large family:), but I'm afraid that's what happens when doctors see children and adults with Down syndrome. They see these folks in a medical crisis and make the leap. They decide that theirs is a life of poor quality. They see the number of hospitalizations or the severity of an illness and decide that patient has a miserable life, as if a medical record can ever adequately describe the life of a person. They never see the patient laughing, loving, living. They never see the in between times. They only see the stress, the sickness, the fear.
Often they assume the negatives must also be true of every other person affected with Ds. Just like my doctor will never see the thousands of healthy moms of many, other specialists will never see the thousands of healthy people with Ds.
So when people with a prenatal Down syndrome diagnosis ask them about quality of life for those with Ds, they answer with their experience, and their opinions formed from their experience. And that's just not accurate.
And it's not good enough.
Thankfully, it's no longer all they have to go on. Lettercase now offers a brochure to medical professionals called Delivering a Down Syndrome Diagnosis. I am told it's excellent and of the highest quality and most accurate information. They plan to deliver them to 10,000 perinatologists, obstetricians, and genetic counselors this year. That will only be a fraction of the number needed to be distributed. It is incredibly expensive to publish and distribute and they could use our help. Please visit the site and consider making a donation or, at least, purchasing a brochure and delivering it to your healthcare professional. If even one woman chose to continue her pregnancy because of it, wouldn't it be worth the cost?
Tuesday, February 1, 2011
Pure Love Giveaway
A few nights ago, Eon fussed in the middle of the night and would not settle down. After trying a cup and a diaper change, I finally just hauled him into bed with us. I rubbed his back and let him lay on me for awhile. He ended up lying between us sideways (why do kids always end up that way?) with his feet basically in my face.
I couldn't sleep. I just laid there thinking how blessed he is to be born in this country, into our family. I couldn't help but think about all the other toddlers who will never be comforted in the middle of the night and who will never know the soft touch of a mother's hand.
I've read before that institutionalized babies don't cry. They learn quickly that it does them no good. There is no one to soothe them or meet their needs. A researcher from Harvard Medical School studying Romanian orphans recently divulged that the institutions were "eerily quiet".
Some of the adoptive moms have mentioned that they had to teach their children how to be comforted. It was a foreign concept to them.
We have to stop thinking that this is someone else's problem, that someone else will meet the need. Because someone isn't. An estimated 147 million orphans do not have anyone to smooth the hair off their foreheads, or rub their backs, or kiss their noses....acts we, as mothers, perform countless times a day.
My friend, Patti, though she is unable to adopt at this time, is working to change that for a few kids. Please visit her blog to join her "Pure Love Giveaway". She has lots of great prizes so you can help an orphan and maybe win something. I should know...I read about it on my iPod Touch that I won in her first giveaway! :)
I couldn't sleep. I just laid there thinking how blessed he is to be born in this country, into our family. I couldn't help but think about all the other toddlers who will never be comforted in the middle of the night and who will never know the soft touch of a mother's hand.
I've read before that institutionalized babies don't cry. They learn quickly that it does them no good. There is no one to soothe them or meet their needs. A researcher from Harvard Medical School studying Romanian orphans recently divulged that the institutions were "eerily quiet".
Some of the adoptive moms have mentioned that they had to teach their children how to be comforted. It was a foreign concept to them.
We have to stop thinking that this is someone else's problem, that someone else will meet the need. Because someone isn't. An estimated 147 million orphans do not have anyone to smooth the hair off their foreheads, or rub their backs, or kiss their noses....acts we, as mothers, perform countless times a day.
My friend, Patti, though she is unable to adopt at this time, is working to change that for a few kids. Please visit her blog to join her "Pure Love Giveaway". She has lots of great prizes so you can help an orphan and maybe win something. I should know...I read about it on my iPod Touch that I won in her first giveaway! :)
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