tag:blogger.com,1999:blog-92195755331936492312024-02-19T11:41:31.034-05:00Simeon's TrailOur youngest sons, Simeon (Eon) and Bogdan (Bo), have Down syndrome or Trisomy 21. This is their story.Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.comBlogger273125tag:blogger.com,1999:blog-9219575533193649231.post-71123353918875973712015-09-14T17:34:00.001-04:002015-09-14T17:34:13.804-04:00Dear Square Pegs<div dir="ltr" style="text-align: left;" trbidi="on">
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I received emails and comments after <a href="http://taralakes.com/2015/04/24/a-polished-turd/" style="border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-size: 20.2000007629395px; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">this post</a> telling me I’m not alone, many from people who have not yet found their way back into the church because of the wounds they’ve received at her hand.</div>
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<a href="https://momlakes.files.wordpress.com/2015/09/square-peg-round-hole.png" style="border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-size: 20.2000007629395px; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;"><img alt="Square-Peg-Round-Hole" class="size-medium wp-image-479 alignleft" height="283" src="https://momlakes.files.wordpress.com/2015/09/square-peg-round-hole.png?w=300&h=283" style="border: 0px; box-sizing: border-box; display: inline; float: left; height: auto; margin-right: 1.7em; max-width: 100%;" width="300" /></a>So many of us simply do not fit the success mold for the stereotypical church member. We are proverbial square pegs trying to fit into round holes. We ask too many questions, we don’t fail quietly, we can’t keep the mask in place. We doubt, a lot. We examine what we’re fed under different lights. We look to see if it holds weight under changing circumstances or if it measures up against what was served last week or even last year.</div>
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Platitudes and christianese answers leave us cold. Tradition without depth and meaning, but just because that’s the way it’s always been, drives us to drink. Clean edges and tidy boxes are our undoing.</div>
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We recognize that the gospel is a scandalous miracle. We appreciate that humanity is messy and complicated. We know that if it looks too neat, it’s probably a lie.</div>
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We tried legalism and failed. It appeals to many, so, so many....</div>
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(For the <a href="http://taralakes.com/2015/09/13/dear-square-pegs/" target="_blank">rest of this post</a> and much more, please visit me at <a href="http://taralakes.com/" target="_blank">Grace for That</a>.)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-72239619462109389552015-09-03T19:20:00.001-04:002015-09-03T19:23:00.876-04:00What We've Been Up To<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I have been a busy bee over at my blog, <a href="http://taralakes.com/" target="_blank">Grace for That</a>. You really should join me over there. But, since you haven't yet done so, let's catch you up on the happenings. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Right before the school year started I blew a gasket when I discovered the teacher we hand-picked for Eon for this year, with whom he'd already developed a relationship, had <i>changed grades!!! </i>I work through my internal drama about that little fiasco in <i><a href="http://taralakes.com/2015/07/31/freaking-out-and-doing-nothing/" target="_blank">Freaking Out and Doing Nothing.</a></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">About a month ago, I wrote about launching our oldest to the <i>other side of the <strike>world</strike> <b>country</b> </i>in <i><a href="http://taralakes.com/2015/08/09/go-forth-guinea-pig/" target="_blank">Go Forth, Guinea Pig.</a> </i>She will be training in urban missions and is still raising support. Please click on the link and read all about it, as well as my parental insecurities. Yikes. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">On the twenty-third of last month, the Serb turned six, two-and-a-half years after he joined our family. I wrote an update on his wonderfulness in <i><a href="http://taralakes.com/2015/08/18/a-full-heart/" target="_blank">A Full Heart</a></i>, and my eyes well up just thinking about how far he's come. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I shared one of my biggest fears, to which many on the </span><br />
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special needs journey can relate in <i><a href="http://taralakes.com/2015/08/24/when-little-outgrows-big/" target="_blank">When Little Outgrows Big.</a></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And, finally, I get my preach on a bit and get off my high horse with my revelation that I don't want to be used mightily, anymore. I don't want Pursue American Awesome. I want to be used minimally. I want to be content with the unknown average, while pursuing simple obedience to God. <i><a href="http://taralakes.com/2015/09/02/i-want-to-be-used-minimally/" target="_blank">I Want To Be Used Minimally.</a></i></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I hope you'll check it out, if you see one you're interested in, and share with a friend. </span></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-74300278725852955022015-07-24T19:09:00.000-04:002015-07-24T19:09:13.188-04:00Abortion and The Myth of the Unwanted Child<div dir="ltr" style="text-align: left;" trbidi="on">
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Abortion.</strong> The topic immediately polarizes. Hackles are raised and you, as a reader, are waiting to be either irritated or relieved by what I’ll say next. Am I on your side or am I wrong? Because in this politicized, highly sound-bitten world, sides are what we’re left with in discussing individual lives and impossible choices.</div>
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It shouldn’t be.</div>
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I’m very open about being a follower of Christ. I have personally been on the receiving end of eight positive pregnancy tests and given birth seven times. It should surprise no one that if I had to choose a side it would be pro-life.</div>
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And yet, I almost cringe at that moniker, so filled with loaded political baggage I am loathe to embrace. Author Rachel Held Evans <a href="http://rachelheldevans.com/blog/why-progressive-christians-should-care-about-abortion-gosnell" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">wrote a post</a> a few years ago on this topic. While I disagreed with some of what she wrote, it resonated strongly with me because of all I did agree with that had been previously unwritten. I get frustrated when the pro-life side seems only interested in banning abortions and actively seeks to undermine programs that would likely stem demand, for example free contraceptives, low cost healthcare, non-abstinence based sex education, subsidized childcare, etc.</div>
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But, I digress.</div>
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I want to address a pro-choice slogan that I hear bandied about that no one seems to dispel, on either side. That of “every child a wanted child.” The pro-choice side likes to insist that if a child is not wanted at conception, he is going to end up a statistic of abuse. The pro-life answer to this is “adoption” as if that’s always a happy ending all tied up in a bow and not a potential minefield fraught with complication, loss, and heartache all its own.</div>
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Abortion is in the news again and I keep reading comments that it’s better for women to abort than for these kids to grow up abused. Never mind the logic that death is preferable to abuse which must surely rankle abuse survivors, I want to know why we just accept that thinking.</div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Why are we all so quick to accept that women who are very unhappy to find the line turn pink on the pregnancy test will, of course, become unfit mothers should they carry to term?</strong></div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Because that’s crap...</em></strong></div>
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(Read the <a href="http://taralakes.com/2015/07/20/abortion-and-the-myth-of-the-wanted-child/" target="_blank">rest of the post here</a> at <a href="http://taralakes.com/" target="_blank">Grace for That</a>. Don't forget to sign up to get new posts sent to your inbox while you're there!)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com2tag:blogger.com,1999:blog-9219575533193649231.post-37217438629352021352015-07-17T17:40:00.001-04:002015-07-17T17:40:11.986-04:00Vows<div dir="ltr" style="text-align: left;" trbidi="on">
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Let’s talk about weddings. No, not about <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">those</em>. I already offered up <a href="http://taralakes.com/2015/06/29/i-wont-take-a-stand-on-gay-marriage/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">an opinion on that topic</a>. No, I want to talk about weddings in general, vows specifically.</div>
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I’ll tell you my bias right off the bat. I’m old. When I got married a hundred, er, twenty-two years ago, there were set vows that were repeated in pretty much every wedding.</div>
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I, (name), take you (name), to be my (wife/husband), to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to obey/cherish; from this day forward until death do us part.</div>
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The only real trend in that regard was to substitute the word “cherish” instead of “obey”. And we thought we were being so cutting edge.</div>
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A few years later, writing your own vows became a thing. As a writer, I think that sounds amazing. UpcycleDaddy gets hives at just the thought. Clearly, it’s not for everyone, but it has definitely become mainstream.</div>
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I think it’s romantic, and entertaining, and sweet, and personal. It endears those of us in attendance to the bride and groom and gives us a sense of who they are as a couple.</div>
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But, somewhere along the way, we’ve lost sight of what <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">vows</em> are...<a href="https://momlakes.files.wordpress.com/2015/07/weddingrings.jpg" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;"><img alt="weddingrings" class=" size-medium wp-image-377 alignleft" height="188" src="https://momlakes.files.wordpress.com/2015/07/weddingrings.jpg?w=300&h=188" style="border: 0px; box-sizing: border-box; display: inline; float: left; height: auto; margin-right: 1.7em; max-width: 100%;" width="300" /></a></div>
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(Please view the <a href="http://taralakes.com/2015/07/14/vows/" target="_blank">rest of the post here</a> at <a href="http://taralakes.com/" target="_blank">Grace for That.</a> Don't forget to sign up at the post to receive an email notification of every new post!)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-33894215267724715002015-06-30T21:17:00.000-04:002015-06-30T21:17:45.280-04:00I Won't Take a Stand on Gay Marriage<div dir="ltr" style="text-align: left;" trbidi="on">
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It smells like fear to me. And fear mongering. I try really hard not to make decisions based on fear.</div>
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I’m a follower of Christ. I know many of you are not who read my words and the term “Christian” has gotten all kinds of bad press, some of it well-deserved. So you may not grasp what Jesus means to me. He’s the reason that we felt compelled to travel across the world to get our Bo. He’s the reason that, even after two years of sleepless nights, I was determined to learn to love that little guy. He’s the reason, the only reason, I succeeded and feelings finally followed actions. He’s the reason my heart weeps for the unloved and the broken and why I so desire to love the least of these because that is what He taught me to do.</div>
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He’s the reason that I hope, when hope is in short supply; why I stand when my knees are quaking; why I say yes when common sense says no. Because He has shown me amazing grace, I am undone. I am not who I once was and I know redemption is sweet.</div>
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Because of Jesus, I have a soft spot for the marginalized, those thought to be unequal in our culture. Those with disabilities, racial minorities, those with mental illnesses, and those who are gay.</div>
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A few months ago, I read <a href="http://momastery.com/blog/2015/04/06/support-your-right/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">this post</a> about gay marriage by Glennon on <a href="http://momastery.com/blog/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">Momastery</a> and it resonated with me. I particularly loved this quote, ” I think if people don’t believe in gay marriage, then mostly they should not get gay married.” It made me chuckle and want to put it on a t-shirt. Her ideas on grace were spot on, as well.</div>
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It’s like we Christians love the idea of grace, but we don’t want it distributed indiscriminately- we want make rules about it and dole it out carefully and strategically. It’s like we’re worried that if <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">everybody</em> knows that she’s loved and accepted by God – it will be Grace Anarchy! I want that. I want Grace Anarchy. I want people to be free to be who they are. It makes sense to me that the free-er people are, the BETTER people are. I believe in people because I believe in God. I think God knew what God was doing when God made each of us.</div>
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I’m not sure what I think of her theology when it comes to homosexuality, though. Truthfully, I’ve been praying about and wrestling it through for months. My poor husband has certainly gotten an earful. I felt like I finally need to figure out what I believe about all of this. Now that SCOTUS issued their ruling, I feel like it’s time to take a stand, either way. I don’t believe that being gay is a sin. But gay sex? I really don’t know. An entire life of evangelicalism, years of Baptist primary school, a year of Bible college, and a childhood as a pastor’s daughter are not so easily shed. I know I’m not alone in my ambivalence and confusion. I want to rightly divide the Word of truth like it says in II Timothy 2:15. Freedom comes with <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">truth. </em></div>
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I then, as a seeker of truth, proceeded to read all 1,986 comments on the Momastery Facebook page about this post because I am also an idiot. I’ve also read numerous articles on both sides and the comments following since the decision was announced. It’s enough to make your head spin.</div>
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A few things jumped out at me....</div>
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(For the rest of the post, read <a href="http://taralakes.com/2015/06/29/i-wont-take-a-stand-on-gay-marriage/" target="_blank">here</a> at <a href="http://taralakes.com/" target="_blank">Grace for That</a>.</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-15645633876041139232015-06-24T19:46:00.002-04:002015-06-24T19:46:25.816-04:00I Killed Nine People<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvgaauUZ25kbJJr9WHdHDplYFRPoJB6_1dKLugGE5SA_8JvaFZhVwMC8_4Jdj9UaqaIwChjUtpdaDDk_29lbvckLqOOPKRP9GrpqI7Gri4-PTgLEcraidhOEdBPEEJV_WfPemmYwKg50U/s1600/AMEchurch.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvgaauUZ25kbJJr9WHdHDplYFRPoJB6_1dKLugGE5SA_8JvaFZhVwMC8_4Jdj9UaqaIwChjUtpdaDDk_29lbvckLqOOPKRP9GrpqI7Gri4-PTgLEcraidhOEdBPEEJV_WfPemmYwKg50U/s320/AMEchurch.jpg" width="320" /></a></div>
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A week ago, a stranger was welcomed into a church, sat among the people for an hour while they included him in their prayer and study, and then murdered them in cold blood because they were black.</div>
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In the aftermath, I’ve been filled with sorrow and grief and disbelief at the callousness with which this act of racial terror was carried out. As a mother, I react in horror at the thought of playing dead, listening to my son die next to me. I feel physically ill and overcome at the thought of waiting hours for word of my husband’s death only to be told that it likely resulted from the very <a href="http://www.dailymail.co.uk/news/article-3132118/How-wife-Reverend-Pinckney-hid-desk-nearby-church-office-six-year-old-daughter-beloved-husband-gunned-Dylann-Roof.html" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">first shots I heard</a> that caused me to cover my child under me as I dialed 911. And then, to tell my children that their daddy is gone, but “We are going to stay strong and we are going to get through this.” I know I couldn’t.</div>
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And then these people, these amazing believers, offered forgiveness in the middle of their grief. I am undone.</div>
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How could this be that in the year 2015, someone could be so filled with hate at people he lives among that he would kill them? How is it that we don’t recognize that he’s a product of our culture?</div>
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I want to point fingers. I want to rail against the talking heads and bloggers and politicians who assure my well-meaning, conservative, white, Christian friends that racism is long dead, white privilege is a myth dreamed up by liberals, and they are fine, good people with nothing to worry about.</div>
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I almost did. (Blog post half-written.)</div>
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But then I prayed. I cried out to God in my frustration and my pain and my grief and He answered me. With a sudden clarity and white hot horror, I saw truth. I saw the one responsible. <strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I saw <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">myself</em>.</strong></div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I killed nine people...</strong></div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">...Read the rest of the post <a href="http://taralakes.com/2015/06/24/i-killed-nine-people/" target="_blank">HERE</a> at <a href="http://taralakes.com/" target="_blank">Grace for That</a>.</strong></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-5957561011434001222015-06-12T19:22:00.002-04:002015-06-12T19:22:32.459-04:00I'm Tired of Holland and I Want to Go Home<div dir="ltr" style="text-align: left;" trbidi="on">
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One of the first things presented to us after the birth of Eon was Emily Perl Kingsley’s famed essay, <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><a href="http://www.our-kids.org/archives/Holland.html" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">Welcome to Holland.</a> </em>I was touched by the sentiment, but never a huge fan of the piece. Basically, it likens having a baby with special needs to planning a special trip to Italy, and then being diverted to Holland <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">forever. </em>It acknowledges the grief associated with the change in plans, but points out that Holland, while not Italy, has its own unique beauty.</div>
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I hadn’t thought about the Holland analogy in years until a friend who’s getting ready to adopt a baby with Down syndrome re-posted it in <a href="http://gratefulforgrace.com/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">her blog</a>. It, of course, caused me to reflect.</div>
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Eon was healthy. He’s also number six of our eight children, so we were pretty seasoned as parents. We didn’t really experience the grief so many do when they embark on this journey. We entered Holland and immediately moved to the peaceful and beautiful countryside to skip among the tulips. Sure, there was the occasional language or cultural barrier to navigate, but it wasn’t anything we couldn’t handle and I was more than prepared to take it all head on.</div>
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Fast forward a few years and we added Bo into the mix. Still dealing with the known Down syndrome, but also tacking on autism, chronic health problems, and adoption issues. And, with Eon getting older, we now have to fight the IEP battles to make sure his educational needs are being met. Also, did you know that <a href="http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">mothers of children with autism have stress levels equivalent to soldiers in combat? </a></div>
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I feel as if we moved from the placid countryside of Holland into the capital city and right into the heart of gang wars. (My apologies to the actual country of Holland. I have no idea if you even have gangs.)</div>
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I’m tired. No, scratch that. I’m <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">exhausted. </em>I don’t want to learn more of the language, or suffer from the loneliness of not fitting in, or eat foods foreign to me. I don’t want to walk about and listen to people jabbering in another tongue. I don’t want to shield my children from enemy fire. I don’t want to duck and run for cover or cower every time I hear a loud noise.</div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I’m tired of Holland and I want to go home.</strong></div>
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I long for the familiar, the comfortable, the easy. I miss the days of doing things without thought. I want to take my boys to normalcy.</div>
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<a href="https://momlakes.files.wordpress.com/2015/06/bograd.jpg" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;"><img alt="bograd" class=" size-medium wp-image-311 alignleft" height="300" src="https://momlakes.files.wordpress.com/2015/06/bograd.jpg?w=165&h=300" style="border: 0px; box-sizing: border-box; display: inline; float: left; height: auto; margin-right: 1.7em; max-width: 100%;" width="165" /></a>I hate that I have to know the Individuals with Disabilities Education Act in its entirety just to make sure my sons are afforded the educational environment that is lawfully due them. It frustrates me to have to spend hours in research prepping for a new specialist appointment to ensure the doctor orders the correct tests and medications or to point him in the right direction of the likely diagnosis. The adrenaline surge experienced every time an older child exits the house and the alarm sounds leaves me in a constant state of high alert, terrified that <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">this</em> may be the time Bo escapes with tragic results.</div>
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I wish I could trust anyone besides his ever-busy oldest siblings to watch the Serb, and even then, I wish it were for longer than an hour or two if during waking hours. (And still my constant checking in drives them batty.) I, selfishly I suppose, want to go to weddings and parties <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">with </em>my handsome husband instead of the carefully planned divide and conquer routine we’ve orchestrated for social engagements. I’m tired of packing a diaper bag when my youngest is a typically-developing, fully potty-trained four-year-old.</div>
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I hate that I freak out over every green snotty nose wondering if my weekend plans are safe or if I should go ahead and pack a hospital bag, just in case. I’m frustrated when my son tries five times to tell me something and I hear the same unintelligible sound five times and I just don’t understand and <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">he gives up </em>and whatever was important to him at the time stays with him and our moment to connect is lost.</div>
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But mostly, I’m tired of interpreting our world to others who don’t live here. It literally pains me to feel my boys have been devalued, either by a stupid social media comment, rude stare at the grocery, or casual remark by a close friend. I hate feeling like I have to be positive all the time or someone may not understand that, while my life is hard, <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I would choose these boys a hundred times over. <a href="https://momlakes.files.wordpress.com/2015/06/eonpool.jpg" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;"><img alt="eonpool" class=" size-medium wp-image-312 alignright" height="300" src="https://momlakes.files.wordpress.com/2015/06/eonpool.jpg?w=168&h=300" style="border: 0px; box-sizing: border-box; display: inline; float: right; height: auto; margin-left: 1.7em; max-width: 100%;" width="168" /></a></em></div>
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<strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Holland sucks, sometimes.</strong><em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"> </strong></em>Yes, Emily Pearl Kingsley, it does have windmills, but where do you find the time to look up and enjoy them?</div>
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I have a choice to make. Sometimes daily, sometimes just when I hear the bullets flying and I find myself ducking for cover, longing for the good old days of home. I can wallow in the hard. I can live in the frustration and the difficult, becoming bitter.</div>
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Or I can embrace the adventure of a life uncommonly lived. I can relish in my daily opportunities for growth and new experiences. I can be overwhelmed with the beauty of relationships I have that others pass by. There is community among the ex-pats of metaphorical Holland. The marginalized have a camaraderie all our own.</div>
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If I hadn’t landed here, I would still be living in my fishbowl of sameness, loving all the people who live and think like me. I would never have learned the stories of my fellow sojourners, come to value their perspectives, share their pain. I’ve found that it’s not just the parents of kids with special needs who land here. This Holland is a home to not just those with a physical or intellectual disability, but also people of color, or those with mental illness, even the LGBT community, any of us who are different than the accepted masses.</div>
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<em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Because there is a place for us here. </em></div>
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So, in the middle of my longing for normalcy, for what I remember home to feel like, do I really want to give up all I’ve gained, all I’ve learned, all I’ve <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">become?</em></div>
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Not really. For I’ve discovered the true melting pot is Holland and here, there is grace for us all.</div>
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(This post first appeared on <a href="http://taralakes.com/" target="_blank">Grace for That.</a>)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com1tag:blogger.com,1999:blog-9219575533193649231.post-90644401263279676112015-06-02T17:25:00.001-04:002015-06-02T17:25:21.228-04:00Stop and Pick the Lilies<div dir="ltr" style="text-align: left;" trbidi="on">
.....<span style="background-color: #f8faf9; color: #444444; font-family: calluna-sans-1, calluna-sans-2, Lato, sans-serif; font-size: 20px; line-height: 34px;">I want to love big, with all of me. I want to share, without pretense. I want to give, expecting nothing in return. I’m supposedly “cognitively intact,” so my emotional processing is a little slow and it takes longer for these lessons to stick. When I grow up, I want to be like my six-year-old son with Down syndrome. He has much to teach me still. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmQ3BK0qzomWmTwtiLwpp8HvWZHKDPhZReATE3AnxqXj8_y03bfZ2mHfgDSL9aMeEzpWiWY5ioHUtI5D-17v8gYRlyGL2Wedkfb9CfJhDiaaOIkDzlOE3QM8z7Lma2asBgE_IzLi1XtF8/s1600/eonflower.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmQ3BK0qzomWmTwtiLwpp8HvWZHKDPhZReATE3AnxqXj8_y03bfZ2mHfgDSL9aMeEzpWiWY5ioHUtI5D-17v8gYRlyGL2Wedkfb9CfJhDiaaOIkDzlOE3QM8z7Lma2asBgE_IzLi1XtF8/s400/eonflower.jpg" width="261" /></a></div>
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<span style="background-color: #f8faf9; color: #444444; font-family: calluna-sans-1, calluna-sans-2, Lato, sans-serif; font-size: 20px; line-height: 34px;">(Read <a href="http://taralakes.com/2015/05/31/stop-and-pick-the-lilies/" target="_blank">this post in its entirety here</a> on <a href="http://taralakes.com/" target="_blank">Grace for That</a> and see what Eon's been up to. If you poke around on that blog a bit, you can read about our IEP journey and catch up on his inclusive year in Kindergarten, as well!)</span></div>
Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-17765955786528926522015-04-27T19:19:00.000-04:002015-04-27T19:21:31.893-04:00A Polished Turd<div dir="ltr" style="text-align: left;" trbidi="on">
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I guess it’s because I’m old or maybe just because I haven’t landed anywhere in the church, but lately I’ve been taking stock, reviewing history, wondering how I got here.</div>
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And by here, I mean nowhere, sadly. I’m disconnected and adrift. I can’t seem to find my people.</div>
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I spent years in a church that was a bad fit. All the signs were there, in neon, yet I allowed myself to be convinced that I was the problem. I was too brash, too confrontational, divisive. Time and time again, I retreated and allowed myself to be silenced in efforts to be a “good girl” or a mature christian woman. The message was clear: Follow the status quo, don’t ask questions, don’t show so much weakness.</div>
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I could never strike the balance. I watched other people share just enough vulnerability to appear humble, but still maintain a veneer of control and success. <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">I envied them.</em> They were esteemed as mature. My mask never stayed in place. I was all in, real, raw. My heart was on my sleeve. I asked a lot of questions. I secretly thought of myself whenever I watched the classic <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">The Sound of Music </em>and heard the nuns sing <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Maria.</em><em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"> </em>I always felt like I was a problem to be solved.</div>
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I felt tolerated, but never understood...</div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">(Read <a href="http://taralakes.com/2015/04/24/a-polished-turd/" target="_blank">the rest here</a> at <a href="http://taralakes.com/" target="_blank">Grace for That</a>.) </span></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-1058579904766251642015-04-01T20:09:00.004-04:002015-04-01T20:09:37.133-04:00Dear Conservatives<div dir="ltr" style="text-align: left;" trbidi="on">
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Dear Conservatives,</div>
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I used to be one of you, exclusively. In the interest of objectivity, I’ll throw out my bias here and let you know, politically speaking, I have no idea where I fall anymore. I am all over the map. I still have conservative leanings. Occasionally, I still enjoy a good <a href="http://chicksontheright.com/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">Chicks on the Right</a> or even (shhhh, don’t tell anyone) <a href="http://themattwalshblog.com/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">Matt Walsh</a> post. To be clear, I often read them, as I like a wide array of perspectives, it’s just that I only <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">enjoy </em>them occasionally.</div>
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I read the comments, too.</div>
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I have to tell you. As a former you, I’m a little appalled at the hate speech. The vitriol is thick. You seem to really relish in painting all liberals with a really broad, nasty brush.</div>
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Don’t worry. I've read plenty of comments from the other side, also. The vitriol is thick over there, too. Turns out, you’re all unthinking idiots, as well.</div>
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But, dear conservatives, you get this post because you have one bomb in your repertoire that you use liberally, no pun intended. And it needs to stop.</div>
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<em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Libtard</strong></em>.</div>
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You probably thought it was so clever the first time you heard it. A genius mish-mash of liberal and retard, blended together to show those filthy liberals just how stupid and worthless they really are.</div>
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Except it’s not clever. It’s lazy. Instead of articulating a valid argument to characterize the flaws in another’s point of view, you just sling a name at them to make yourself feel better. So clever. Perhaps you should consider the old adage: “Better to remain silent and be thought a fool than to speak out and remove all doubt.”</div>
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But it’s more than lazy; it’s hate speech.</div>
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By using that word, you’re no longer just slamming your opponents. Now, you’re marginalizing and denigrating an entire people group, those who have fallen under the medical diagnosis, Mentally Retarded (now known as Intellectually or Cognitively Disabled.) And, frankly, those people put up with enough crap without you trying to puff yourself up with your own importance at their expense. Stop it! And don’t tell me you didn't mean it <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">that way</em> or you weren't talking about <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">them</em>. As the mom of two boys who fall into that category, I don’t believe you. You are making a clear and distinct comparison to my boys and people like them when you choose to use your own particular brand of that word.</div>
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I know what you’re thinking. You’re rolling your eyes and thinking about your <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">right </em>to freedom of speech, by golly, and how this politically correct business has gone too far.</div>
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Maybe. Except, I’m telling you that using the <a href="http://www.r-word.org/" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">R-word</a>, in any form, is incredibly hurtful to me and to families like mine. It wounds us a little each and every time we hear it or read it, even in the comments section on polarizing articles.</div>
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You may not realize this, dear conservatives, but people to the left of you view you collectively as a group who doesn't care about <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">people</em>, only about <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">your rights</em> and your need to <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">be</em> right.</div>
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So here’s your chance, conservatives. Stop using <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">libtard. </em>Grow a vocabulary and prove them wrong! Care about <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">people</em>, after all. Maybe then you will actually be heard.</div>
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(I usually only blog over at <a href="http://taralakes.com/" target="_blank">Grace for That</a>, but I copied this whole post here, because it matters so much to me.)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-10653632874066577162015-03-25T20:01:00.000-04:002015-03-25T20:01:35.705-04:00Coveting Freedom<div dir="ltr" style="text-align: left;" trbidi="on">
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I turned off the computer and went to bed, completely green with envy. Sleep wouldn’t come. One of my friends was jetting off to an exotic land on a missions trip with her daughter, and another on a tropical romantic get-away with her husband. Proof in pictures for both displayed on Facebook. I couldn’t stand to think about it, but could think of nothing else.</div>
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My discontent had been brewing for weeks.</div>
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While I adore these children God has entrusted me with, there is no denying that the special needs life can be trying. I had been focusing only on the trials.</div>
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Recently, the radio station I listen to has been encouraging listeners to call in to win a trip. Always up for a contest, I reached for my phone the first time it was announced. As I punched in the number, I suddenly stopped as awareness swept over me. I hit end call, instead. Even if we <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">won</em> a trip, we couldn’t go. There is no one who could watch Bo for an extended time.</div>
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The realization was a bitter pill. I felt stuck.</div>
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(Read the rest of the story <a href="http://taralakes.com/2015/03/24/coveting-freedom/" target="_blank">here</a> over at <a href="http://taralakes.com/" target="_blank">Grace for That.</a>)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-23260696583534682102015-03-10T19:53:00.002-04:002015-03-10T19:53:05.728-04:00About Church Criticism<div dir="ltr" style="text-align: left;" trbidi="on">
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Someone linked this <a href="http://www.faithit.com/open-letter-people-writing-sharing-open-letters-whats-wrong-church/#.VM_e0mL7HwT.facebook" style="-webkit-transition: all 0.2s ease-in-out; border: 0px; box-sizing: border-box; color: #8a621d; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank">Open Letter to All the People Writing (And Sharing) Open Letters About What’s Wrong with The Church</a> on Facebook and received a lot of positive feedback. I read it and it irritated me. Probably because, while not a Millennial, I am among those who “liked” the original letters to which the author refers and may have even shared them.</div>
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She makes some excellent points and her intent is to spur us on to stick it out and to share our frustration with the leadership in our local church and not spew it all over social media. I get that. And, I agree with her that some of the criticism is petty. But, much of it is born out of pain and confusion. A lot of it is spot on...</div>
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(Read more of <a href="http://taralakes.com/2015/03/04/about-church-criticism/" target="_blank">this post here</a> by visiting my blog, <a href="http://taralakes.com/" target="_blank">Grace for That</a>.)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-39219595849942647182015-02-16T18:17:00.003-05:002015-02-16T18:17:32.655-05:00Two Years My Son<div dir="ltr" style="text-align: left;" trbidi="on">
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Two years ago, we did what, at the time, seemed like the bravest, craziest, scariest thing. We left our seven children in the care of various people, flew across the world to a strange land, and claimed an unknown orphan as our own.</div>
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We look at that act now and think, “Duh. Of course we did. How else could we have gotten our Bo?”</div>
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Funny thing about the unknown. It always looks bigger than reality. It makes me wonder what things I have missed out on, dismissed out of hand because they looked too big, too scary. How many times have I let fear win and missed the “duh”? But, this time, I didn’t. I tear up just thinking about all the times I almost walked away...</div>
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(Please read the <a href="http://taralakes.com/2015/02/15/two-years-my-son/" target="_blank">rest of the story here</a> on my new blog, <a href="http://taralakes.com/" target="_blank">Grace for That</a>. Be sure and sign up to have future posts sent to your inbox!)</div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-26544375657722573012015-01-25T17:36:00.001-05:002015-01-25T17:36:22.637-05:00Forty-Five, and What Remains<div dir="ltr" style="text-align: left;" trbidi="on">
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So, I turn forty-five on the fifth of next month. <strong style="border: 0px; box-sizing: border-box; font-family: inherit; font-style: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"><em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">FORTY-FIVE! </em></strong>How the heck did that happen?!? I very clearly remember being in my twenties. Wasn’t that just last week? I remember thinking, erroneously apparently, that people in their mid-forties must actually know what they are doing. They are grown-ups, after all.</div>
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Turns out, I was wrong. Or maybe all the other forty-five-year-olds <em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">do</em> know what they’re doing and<em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;"> I’m</em> the anomaly. That would be about right...</div>
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<span style="font-family: Arial, Helvetica, sans-serif;">(That was just a short tease of my latest post on my new blog, <i><a href="http://taralakes.com/" target="_blank">Grace for That</a>.</i> Check out <a href="http://taralakes.com/2015/01/18/forty-five-and-what-remains/" target="_blank">the rest of it</a> and be sure and scroll to the bottom to sign up to receive all future posts in your inbox.)</span></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-37852055189734118102015-01-04T16:55:00.002-05:002015-01-04T16:55:57.443-05:00What Faith Is Not<div dir="ltr" style="text-align: left;" trbidi="on">
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<em style="border: 0px; box-sizing: border-box; font-family: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; vertical-align: baseline;">Faith is the substance of things hoped for, the evidence of things not seen.</em> Hebrews 11:11.</div>
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I memorized it in the second grade at the little Baptist school I attended, but I’ve pondered its meaning countless times in the years since. What is faith? Sometimes, as I listen to my fellow Christians bandy the word about, I want to declare, like Inigo Montoya, “You use that word a lot. I do not think it means what you think it means.”.....</div>
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<a href="http://taralakes.com/2015/01/04/what-faith-is-not/" target="_blank">Read the rest</a> at my new blog, <a href="http://taralakes.com/" target="_blank">Grace for That</a>. Be sure and sign up so you don't miss any new posts, too! </div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-73352084585538480952014-12-22T16:40:00.001-05:002014-12-22T16:40:20.320-05:00Hospital Jesus<div dir="ltr" style="text-align: left;" trbidi="on">
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The radio preacher’s words echoed back to me, “Without Jesus in our Christmas season, we have no reason to celebrate.” I knew he was right and I was ashamed that in my haste to check things off my list, I’d neglected to even think about Jesus of late. As I headed into work, I determined to find Him in my Christmas, beginning that very evening.</div>
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Except when I finally got home, I discovered that the abscess behind our little Serb’s ear had doubled since the day before and was clearly not responding to the prescribed oral antibiotics. A quick call to the ENT confirmed my suspicion that an ER visit was in order. So much for Jesus, I thought wryly...</div>
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Read more on my new blog, <a href="http://taralakes.com/2014/12/21/hospital-jesus/" target="_blank">Grace For That.</a></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-92164821838369002642014-12-01T14:43:00.001-05:002014-12-01T14:43:48.998-05:00Change is in the Air<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I started blogging here shortly after the birth of Eon as a way of processing my feelings and experiences, as well as connecting with others on a similar journey. I added in my blog at Remnant of Grace as a way to keep my thoughts on faith separate from my musings here on disability. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But my life is hard to categorize and my brain isn't that linear. It's time to converge my blogging spheres and allow myself the freedom to write whatever my heart feels. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Please join me in my new space at <a href="http://taralakes.com/" target="_blank">Grace for That</a> over on Wordpress. I started the new site off with a <a href="http://taralakes.com/2014/11/28/a-white-womans-response-to-the-ferguson-fall-out/" target="_blank">controversial bang</a> because, frankly, it didn't fit into either of these spaces. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you so much to my readers here. I have treasured this season of my life and the support you've given me. I do hope you'll follow me there. </span></div>
Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-33825377713301986262014-11-19T18:44:00.000-05:002014-11-19T18:44:06.346-05:00Blessing The Special Needs Mom<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I was asked to speak at a MOPS group on the topic of "encouraging, supporting, and loving moms of kids with special needs." Of course, I was thrilled to be asked and even more thrilled that they recognized that as a need to begin with. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I thought I'd post my notes here for anyone who couldn't be there: </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Just like all families, special needs families are a varied group. So many possible diagnoses and then levels of severity within those diagnoses, medical complexities and complications, coping skills for the parents, support systems for the family, etc. It's a tough job to try and speak for all of them. So, I reached out to my Facebook groups and asked other parents what they want you to know, too. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So why do special needs families need to be encouraged? I wrote <a href="http://simeonstrail.blogspot.com/2014/06/what-is-church-to-do.html" target="_blank">this description</a> on my blog recently: </span><br />
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<span style="font-size: large;"><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;">Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. </span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;">I wrote about the ramping up of behaviors of our little guy in a recent post <a href="http://simeonstrail.blogspot.com/2014/06/at-edge-of-parenting-abyss.html" style="color: #888888; text-decoration: none;" target="_blank">here</a> and the effects on my psyche and our family. I left out <i>a lot</i> of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. </span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;">Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. </span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif;">My point is, often times, we parents are <i>shredded</i>. We are at the end of our proverbial ropes and hanging on by a thread.</span></span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">What we want you to know:</span><br />
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<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Know that we're just like you</b> - We're not special and we're not supermom. Contrary to the popular adage we hear a lot, God does not give special children to special parents. That's just crap. What we're doing is what all good moms do - caring for our kids and meeting their needs. Don't tell us, "I could never do what you do." Of course you could! And you would, if your child needed you to do it. I think it's supposed to sound encouraging, but when I hear that, it makes me cringe and think of all the things I'm <i>not doing </i>that you probably think I am. No mom thinks she's got it all together, and if you do, just get on Pinterest for five minutes. You'll get over it. We're just like you and we all feel like there's more we should be doing.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Get to know our kids.</b> We think our kids are amazing! While life may be tougher than average, we wouldn't trade our children for anything. We are not disappointed in them. When they meet a milestone they've been working on for months, we celebrate like they've scored the winning touchdown in the championship game. If you want to bless us, get to know our kids. Learn some signs if they use ASL or figure out their communication board if that's what they use. If they use a wheelchair, ask us if they can sit in a regular chair and how they transfer. Learn about their feeding needs, etc. In spite of their special needs, they are children first. They each have unique personalities and things that make them laugh and when you get to know them, their disabilities will begin to disappear. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Reach out to us.</b> This life can be isolating and we're lonely. Our kids' needs often limit our involvement. We may not be able to attend the mom's night out because we don't have reliable childcare. The morning Bible study may offer childcare, but not necessarily for <i>our</i> children. Even the group playdate in the park is not a social time for us as our child may need constant supervision due to being behaviorally inappropriate, or unable to physically manage the equipment. Please, continue to invite us even when we say no more than yes. It means a lot to know we're remembered. Forgive us when we get wrapped up in something to do with our child and are not as available or interested in your life as we want to be. We don't want to have a one-sided friendship and we're sorry if we make you feel that way. Don't give up on us when we fall off the radar. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Give us grace when we're not very gracious.</b> Often, the most difficult part of this journey is everyone else. This life is one of constant advocacy. Our children face discrimination from the school system to the insurance companies to looks from other parents to comments on blogs. We have to fight for the rights of our children in almost every arena, sometimes for their very right to exist. Because of this, we often have a chip on our shoulder. Please give us an extra measure of grace. We've learned that the best defense is a good offense and It's hard to shut off "mama bear". We forget that there are safe places and safe people. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Be our support when our child is hospitalized.</b> When our child falls ill and goes to the hospital, our world collapses. Gift cards to local eateries are so helpful to keep us from eating expensive and awful cafeteria food. (Moms aren't provided a tray unless they are breastfeeding.) Bringing healthy snacks when you visit is wonderful, too. Often, we don't feel comfortable leaving our child and having a stash of protein bars and fruit is helpful. And do visit, even when you don't know what to say. Just sitting with us helps break up the monotony and reminds us that there is an outside world. Organizing meals and childcare for the family at home is huge, as well. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Offer babysitting/respite.</b> So many of us don't have anyone reliable to watch our child. Marriages in special needs families are often strained. Allowing us a date night would strengthen the whole family.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Offer to take the siblings to fun events/extras.</b> Siblings sometimes miss out on those and we feel guilty about that. While we prefer the whole family be together, sometimes it's just not feasible to take the child with special needs to certain events. It stinks for all of us when that means their siblings miss it, too. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Please don't use the R-word.</b> Ever. When you say, "I'm such a retard!" or "This phone is so retarded!" it cuts deep. We know you didn't mean it "like that", but nothing you can say is going to make it okay with us. It is offensive and hurtful to an entire people group and their families. Please, choose a different word. </span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Become aware of how your church handles special needs.</b> Advocate if necessary. We love it when someone comes alongside and advocates for us. People with disabilities and their families are among the least churched group in America. I know of many, many families who used to faithfully attend, but have been wounded and made to feel unwelcome because of insensitivity toward (and, in some cases, outright rejection of) their child with special needs. I mentioned earlier that we are often shredded and feel isolated. We need to be there. Please make sure your church is making a place for us. </span></li>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I don't have the answer for every family. My biggest piece of advice? Ask your friend how you can bless her. Tell her you don't know much about special needs. Would x,y,z be helpful? I know she'll be touched. She may never take you up on your offer, but she won't forget it, either. </span></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-23940469912016181432014-11-02T21:00:00.001-05:002014-11-02T21:00:47.479-05:00Be the One<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We did not attend church today as several of our crew are fighting the upper respiratory infection I brought home from work and we decided not to spread it around. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">A few of my friends posted videos of Facebook in commemoration of Orphan Sunday. They were my undoing. My heart filleted and laid bare. Salt rubbed in the wound that is always there, but sometimes below the surface of an apathetic life and my first world concerns. This is the day, one time a year, that the church notices, that we take a closer look and we <i>see them. </i></span><br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dw2wLGuB5CPfwI2ag3OlejDkFIh3FFLPumNKNNaUBw0JYpI3RfAGlkaaxCWZsZm4Q1DRHeTJWK_VPwxf31fuQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The numbers are overwhelming but we need to remember that each of those children has a name, a personality, a uniqueness...a purpose. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It only takes one to make a difference in the life of an orphan. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Then I watched this video and I wept. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Did you see that? Did you see how these boys light up when shown just a little bit of kindness? Did you see them melt into the volunteer when she holds them? Did you see the bruises and the sores? Can you imagine what their lives are like when there are no witnesses?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It seems like so little that these volunteers come once a week to ease their suffering. But these children have nothing and for those with nothing, that little is EVERYTHING! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I weep because I see my Bogdan in them. Their lives were what he faced. Instead, he is learning to speak and the joy of voicing his wants. After careful study of his brother and I, he is learning to relax into my snuggles and to seek them out. He is learning colors, and sorting, and sequencing. His personality is coming out more everyday. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He has a future. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And, like most orphans, they don't. But, unlike most orphans in the same situation, they have Friday. And Friday, those volunteers will come back and bring the light and the love and the music with them. And the next Friday, and the next. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Because <a href="http://wideawakeinternational.org/uzznm67sa6xn0hvkjqeoyx0ht2kgmo" target="_blank">those volunteers</a> know the power of one. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It may seem like too little to <a href="http://hopechest.org/" target="_blank">sponsor an orphan</a>, or contribute to <a href="http://www.orphanaid.org/index.php/about-us/about-bykota-house" target="_blank">a children's home</a>, or volunteer with <a href="http://www.bbbs.org/site/c.9iILI3NGKhK6F/b.5962345/k.E123/Volunteer_to_start_something.htm" target="_blank">Big Brother's or Sister's</a>, or be a <a href="http://www.safe-families.org/" target="_blank">Safe Family</a>.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But it's not. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Be the one to make a difference for one. </span><br />
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-91746604081501009722014-10-26T16:23:00.000-04:002014-10-26T16:23:51.559-04:00That<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We were talking about adoption. She admitted that she's not open to special needs. "Not everyone can do <i><b>that</b></i>," she said.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I didn't hear the rest of the conversation, so puzzled was I by that last statement. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Do what, exactly? What is it she thinks I do? </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Meet my kids needs? Love them? Sacrifice my time, energy, and self to make sure they're cared for? That's just good parenting and it's what all good parents do, regardless of the needs of their kids. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">What superhuman qualities does she think I possess that she doesn't?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The statement bothered me. It bothers me, still, and I can't quite put my finger on why. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I feel like we're putting children into categories and those with special needs are a subspecies. In adoption, you get to choose. There are boxes to be checked. You get to decide what's acceptable. It's a measurement held up against a child to see if they pass the test to be in your family. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Those with special needs are found wanting, time and time again. They are left languishing, usually <i>dying</i>, in institutions. They are left waiting in group homes, statistically more likely to be abused than not. They are shuffled from foster home to foster home until a permanent institutional placement is found. They are left behind. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Why?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Because, while they have no facts to back it up and no first hand knowledge of what <i><b>that</b> </i>actually entails, potential adoptive parents believe "not everyone can do <i><b>that</b></i>." It's too big. It's too scary. They don't want a subspecies. <i>They just want a normal child.</i> They don't see the child with special needs as a child, at all. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sadly, it's not just relegated to adoption. As prenatal testing becomes more sophisticated and widely used, the unborn must now audition to be a member of the family, as well. Score too high on the chromosome test or too low in grey matter, and you fail. Not only do you not get a family, your sentence is death and you don't even get a chance to prove your worth. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We live in a society in which easy has become idolized. That which costs something, which taxes us in any way without great perceived reward, is to be avoided. Including children. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Let me let you in on a little secret. Parenting children with special needs <i>is</i> rewarding. Personally, I don't think it's any more or any less rewarding than parenting typical kids. It's just different. Sometimes, it's amazing and filled with joy. Your child reaches a milestone they've been working on for months and you feel like your heart will burst within you. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And sometimes, it sucks. Kids are messy and demanding and exhausting. Kids with special needs are sometimes those things on steroids. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But, once you say yes to a child, you love him to the moon and you wouldn't trade him for the world, even with the messy and demanding and exhausting, because he's yours. And he is worth <i><b>that</b></i>. And, actually, you find <b><i>that</i></b> isn't nearly as big or as scary as it once was. In fact, <i><b>that</b></i> kind of fades into the background and turns into something you now know simply as <i><b>life</b></i>.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And life is good. </span></div>
Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com1tag:blogger.com,1999:blog-9219575533193649231.post-86957779353689819932014-09-28T18:45:00.001-04:002014-09-28T18:45:09.860-04:00I Don't Have My Sh*t Together<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">One of my co-workers made a crack the other day that hurt my feelings. While she said it in a joking way, she basically called me out on my slacker tendencies. I ruminated on it for days. I wanted to defend myself, but the truth is, I have no defense. I <i>do </i>leave stuff undone - paperwork late, equipment left out, co-signings piled up - things likely to drive her crazy. Don't get me wrong. My patients receive good care from me and I have complete confidence in the job I do for them. As a relationship-oriented person, I am likely to go the extra mile to make sure all their needs are being met, beyond occupational therapy, as well. But the other stuff, the mundane details, those are less likely to receive my immediate attention. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I wanted to apologize and tell her I'll do better. But the staggering, deflating, and unabashed truth is I won't. I know this because I'm doing the best I can. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">A nauseating wave of knowledge hits me: <i>This is truth in all areas of my life.</i> As a wife, as a mother, as an employee, as a friend, as a sister, as a daughter, as an advocate, <i>as a person,</i> I'm doing the best I can. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><b>And I'm falling short.</b></i> </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Appointments skipped, homework undone, laundry left in the washer, field trip money not delivered, emails unreturned, voicemails unanswered, text messages ignored, snacks not sent, basketball sign-ups missed, fine motor opportunities lost, reading practice shelved... The list is endless. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">For all I'm not doing, I can't seem to stop the thinking. My brain will not shut off. Constant ruminations of the above list, mixed with the current list of to-dos and an ever-running list of want-tos and time will not slow down. Catching up is an impossibility and my feet feel stuck in concrete when I do get an odd minute, unable to prioritize. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Enter panic attacks. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Now that Bo finally has a cocktail of medications that allow for more than four hours of sleep a night, my brain has found other ways to keep me from precious rest. If it's not rolling over the constant lists, it's worrying about the elusive "enough" known so well by those of us in the world of special needs. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Do they get enough therapy? Should we add in outpatient speech again for Eon? I should call about the script for a communication device for him. Is he really in the right school placement? Does he get enough support? I hate that he is telling me about "mean boys" but can't communicate more than that. Is he just being dramatic as he tends to be or should I be doing more to investigate? What about Bo? He can't communicate at all. What if people are mean to him? I'd never know. Should I be demanding more communication sent home about him? I keep meaning to do flash cards for reading for those boys. Why do I keep forgetting? I need to spend more time in physical contact with Bo for attachment. I have not done enough of that with him. I don't do enough of his physical care, either, when I'm home. Do I do enough sensory stim...</span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It spirals on and on until the question becomes:</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><b>Am I enough?</b></i></span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And suddenly, my heart is racing and feels as if it will pound outside my chest wall and I cannot breathe. It takes all mental effort to slow my breathing, inhale, exhale, slowly now, breathe in, blooowwww out, over and over until I my muscles relax and normal breathing resumes. I am awash in sweat. I look at the clock. 3:07. Sleep will not come tonight. Which means I will be fuzzy at work tomorrow and the cycle will continue. Fabulous. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">So, I bought this shirt. </span></div>
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<a href="http://2.bp.blogspot.com/-r3zAkRFH_-U/VCh-2BViViI/AAAAAAAAUV4/ZAzuF40-BK0/s1600/front.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-r3zAkRFH_-U/VCh-2BViViI/AAAAAAAAUV4/ZAzuF40-BK0/s1600/front.jpg" height="400" width="335" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm not one to use this type of language, but it called to me. It's true, obviously, but more than that, it gave me a glimmer of hope. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If they made a <i>t-shirt about it,</i> maybe I'm not alone. Maybe someone else can relate. Maybe they are willing to own up to it, too. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I don't know why it's true of me. I don't know if it's because I have eight kids or because some of them have special needs. I don't know if it's because I haven't slept through the night since January of 2013 or because I have ADD. I suspect it's because I'm human. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Pride keeps us from admitting it, but I think most people are failing in some way. It's probably not on a colossal scale like me, but not many are living in a colossal family like mine. Worrying about all the ways I'm falling short only further distracts me from what I need to do. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm a Christian. We tend to only present the side of us that has it going on. Maybe we think it will scandalize Jesus if we expose the truth that sometimes life just sucks, we wonder where God is, and we don't have our shit together. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I hope it doesn't. Because this is me. This is where I am in the journey and Jesus is the one holding me in the middle of the night telling me to breathe in, breathe out, slowly now. Jesus is the one reminding me that I'm probably not enough, <i><b>but He is,</b></i> and His grace is sufficient for me. Jesus is the one loving the people through me that He puts in my path, even as I miss the details. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He's the reason I can do my job with a smile, I can snuggle my little boys as I send them off to school, I can joke with my teens about pop culture, I can conjure up interest in hermit crab habitats and skateboard stunts, I can delight in yet another stuffed animal dressed up like Elsa, and I can laugh with my husband at the end of the day. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">In spite of all that I'm not doing, or doing wrong, Jesus is the only reason I ever get anything right. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">No, I don't have my shit together. I hope to, one day. In the meantime, <a href="http://remnantofgrace.blogspot.com/2013/08/there-is-grace-for-that.html" target="_blank">there is grace for that.</a></span></div>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com3tag:blogger.com,1999:blog-9219575533193649231.post-4249697612753587992014-09-09T21:04:00.001-04:002014-09-09T21:04:31.629-04:00Disability and Friendship<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">"So proud of my daughter," she gushed. "Out of all the kids in her class, she chose to befriend the child with a disability and now even wants to have a play date with her!"</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm used to hearing that sort of stuff. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm even used to seeing moms beam with pride when they notice their typical kids being nice to my boys with Down syndrome. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I get it. I used to be the mom of the typical kid thrilled that her daughter was playing with the "special needs boy" in preschool. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I volunteered in my oldest's preschool class one day and was startled to realize that her classmate, Collin, didn't have hands. Due to some sort of congenital anomaly, he had a few digits on one arm about where his wrist was and a thumb-like appendage at the end of the other wrist. Collin was equally as startled that the parent volunteer that day happened to be an OT and didn't let him off the hook for the cutting task, but modified it, instead. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">My daughter, three-year-old at the time Michaela (Mick), was completely undaunted and included Collin in every game she played. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I was the mother bursting with pride on the way home and having the enlightened conversation with her daughter:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: </span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm so proud of you for including Collin in all your play. It can't be easy for him to do everything you can.</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Mick: What do you mean?</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: Well, without hands, it has to be hard for him to do some of the stuff that you can do. So, it's really nice of you to help him and play with him. </span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">You're probably going to be surprised to hear me say this, </span><i><b style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;">but what a terrib</b></i><b style="font-family: Arial, Helvetica, sans-serif; font-size: x-large;"><i>le message to send to a young child.</i> </b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I'm all for encouraging friendships with kids of all abilities, but I'm also very sensitive that we send the right message when we do so. Let me point out what I did wrong. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Instead of encouraging friendship, I introduced the concept of pity, ie, "it's hard for him to do things." By congratulating her for doing what came naturally (playing with a same-aged peer), I highlighted the difference and gave her superiority in the relationship by telling her he needs help. Collin was no longer an equal and I removed all reciprocity from the friendship. Her focus was then on attending to his perceived needs and her desire to be nice, rather than on his killer kickball skills (her favorite game) and his keen sense of humor. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I don't know if Mick played with him differently after that. I hope not, but I'd be surprised if she didn't. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I wish I could apologize to Collin's mom. I get it now.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Prior to our conversation in the car, Mick had no idea that Collin was different. Most little kids don't notice difference like adults and if they do, they seldom care. The rest of our conversation:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Mick: (Baffled) What are you talking about?</span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: (Plunging ahead like the idiot I was) Collin doesn't have any hands. Haven't you ever noticed that?!</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Mick: What? No. We just play and stuff. I don't look at his hands.</span> </blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: Well, it's important that you keep being nice to him anyway. </span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">If I could go back fourteen years to my then-self, I would've handled it differently:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: Hey, you seemed to play with Collin a lot. What do you like about him?</span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Mick: He plays kickball really good and he has his own ball! And he's funny.</span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: That's great! Should we have him over to play?</span> </blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Mick: Yeah!</span></blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Me: Okay. I'll call his mom.</span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">See how easy it could have been? Encouraging friendship without passing along my own hidden disability prejudices?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I know what it's like to be proud of your kid's choices and character. If you have a child that willingly friends kids of all abilities, well done, parent. You should be proud. There are a lot of kids out there who would bully and malign my boys. More still who wouldn't give them a second glance. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But almost as much as I want a world in which no one would think to bully them, I want a world in which it wouldn't take a hero to befriend them, either. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">That begins with parents, even those of us who have other kids with disabilities. The initial quote was from a mom who also has a child with Down syndrome. While I get her pride, I hope she kept it cool with her daughter. I hope she stayed away from the traps of pity and superiority and focused on <i>the friend</i> and not the disability. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It is said that disability is natural. So is friendship. Let's start there.</span><br />
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com5tag:blogger.com,1999:blog-9219575533193649231.post-10406308617945178632014-08-23T22:03:00.001-04:002014-08-23T22:05:28.944-04:00In Living Color<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When Eon was born five years ago, someone said to me of the special needs journey, "The highs are higher and the lows are lower."</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">They were right. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I see it in colors. Fuchsia, puce, burnt orange, aqua, sunflower for the highs, and indigo, charcoal, grey, and black for the lows. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I wrote of my fears of sending Eon to kindergarten in a <a href="http://simeonstrail.blogspot.com/2014/08/first-day-of-kindergarten-panic.html" target="_blank">recent post</a>. While he's perked up and seemed to be enjoying school more as time went on, I really didn't know for sure how successful he was.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Until his teacher called a week ago. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She wanted to ask me if I felt ready to send him in underwear starting the following Monday. We'd been working on potty training, but he still needed reminders and had frequent accidents before school started, so we'd been sending him in pull-ups. Mrs. V. assured me he had not had one accident since school started, something we had noticed at home, as well. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">(He wore underwear all this week, including night time, and had zero accidents. I think he's finally got this!)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But she went on to tell me more. "I was just telling our inclusion specialist that I was looking forward to having him in my class this year, but I was concerned with how well he would transition into it. I am so impressed! He has far exceeded my expectations! It's like he's been in my classroom all year." (And yes, <i>they have an inclusion specialist!</i> Who knew?!?)</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She went on to give an example. Each morning, the students are expected to hang up their backpacks, take out the blue folder and place it on her desk. Then they fill out their lunch menu and put it in the lunch box, get their seat work and begin working. "Eon does that every morning without reminders." </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Cue the bright colors! </span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I am over the moon! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We have seen other positive changes in him since school started, too. (Although, really...is there anything better than fully potty trained?!?) The other day, he came into the kitchen, fixed himself a jelly sandwich, and put everything away when he was done. Well okay, Mr. independent. Help yourself! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I've noticed him playing with and interacting with Bo a lot more when he's home, as well. I think he misses him. I'm not sure Bo agrees that attention from Eon is a positive change, but he'll come around. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It's been a week since that phone call and I'm still seeing color. He's in the right place. It makes my heart happy. </span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-w-sEAvRSAOQ/U_lGz8mbKbI/AAAAAAAAUUM/RTUt7l3lkrE/s1600/20140819_174047.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-w-sEAvRSAOQ/U_lGz8mbKbI/AAAAAAAAUUM/RTUt7l3lkrE/s1600/20140819_174047.jpg" height="640" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chef Eon helping Mom in the kitchen.</td></tr>
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com3tag:blogger.com,1999:blog-9219575533193649231.post-38009350457941819622014-08-18T23:01:00.000-04:002014-08-18T23:01:03.702-04:00To the Woman Who Gave Birth to My Son...<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Dear Bogdan's birthmother,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Five years ago today, your dream of motherhood became a reality. I imagine your trek to the hospital. After ten long years of infertility, the wait was finally over and your precious gift would soon arrive. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">They told me his was a normal delivery. Having delivered seven of my own, I can well imagine your tears of elation and relief as you caressed him and held him to you after that final push. Did you see signs right away? Did they? Were there hushed whispers and knowing looks? Did they whisk your boy away for further observation? Or did you get time with him to bask in the glow of new motherhood before the darkness descended?</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">At some point, you did find out. Down syndrome. That news I don't have to imagine. I've been there. I know the air was sucked from the room in that moment. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">But the weight of it was heavier for you than it was for me. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The only choice that you could see was dark and devastating. And, in contrast to the overwhelmingly long but hopeful road that brought you to motherhood, the trip out of it was abrupt and rife with grief. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And so I can't help but think about you on this day, and wonder </span><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">if I'm loving him well enough for you. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">As he sits next to me when I write this and pinches me hard, I try to react with grace and remind myself that he's overtired from a full day of school and therapy. I tickle him and he smirks and climbs off the couch. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Can I be honest? </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><b>He wasn't what I was expecting, either.</b></i> </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I was expecting Down syndrome. <i>I wanted Down syndrome.</i> I would've welcomed the usual medical conditions that often accompany it. We checked boxes and boxes on the adoption papers of all the things we felt we could handle. So many things we were willing to accept along with a Down syndrome diagnosis.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Autism was left unchecked. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Autism was something of which I knew so little about...and cared to know even less. It scared the crap out of me and I knew there was no way I could handle that. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I was absolutely right. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The road to where we are has been rocky, full of potholes and unexpected turns. We didn't know what we were dealing with. I watched other children come home from worse situations and make amazing progress and our boy seemed stuck with no efforts to sign, to speak, to wave bye-bye, even. A year in and he was still drinking from a bottle. It took months of therapy to teach him to look at us and interact beyond a suspicious stare. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When behaviors ramped up around the one-year-home mark, I was beside myself with worry and fear, but also beginning to finally accept that God, in His infinite wisdom (and sense of humor) had checked the autism box for us. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">There were times I worried I'd lose myself in learning to love our boy. While he has a smile that can light up a room, his pinches leave bruises, his bites leave teeth marks, and his incredible aim has left bumps on more than a few noggins. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I confess that I don't always react with grace. Frustration and fear have too often colored my response. I sometimes wonder what you would do if you were in my stead. Because I've no doubt that you have wished for a do-over at least a thousand times. Would you do this better than me? I fear you would. As with all my kids, I fail him much. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He's learning so much! I wish you could see him now. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">As I was going to put food on the table for dinner, I felt him brush past me as he raced to his seat, pulled it out, and climbed up in it, always ready for a meal. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He's no longer content to sit in the background and play with shoes, but wants to join in, often painfully scratching my feet in his version of tickling, which he finds hilarious. I can't help but laugh, too, because I'm so overjoyed that he wants to be apart of us and is trying so hard to play appropriately! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Every once in awhile, for reasons I will never know, he gifts me with the most fabulous spontaneous neck hug. And it sends me to the moon. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">You see, it was tough going for awhile. But, I love this boy of ours. I accept him fully now, no matter a diagnosis, no matter what's to come. I am blessed and honored to be his mom. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Thank you for nurturing him when he was in your womb. Thank you for birthing him well. I hope somehow you can see across the miles that he's good and that he's loved. I hope it eases the hard of this day for you. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And, thankfully, I did lose myself in learning to love him. Pretty sure that's what God had in mind all along. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Love,</span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Bo's mom</span><br />
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com0tag:blogger.com,1999:blog-9219575533193649231.post-45411463678207217422014-08-09T20:28:00.001-04:002014-08-09T20:28:13.487-04:00The Dawn Breaks<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">What's the expression? It's always darkest before the dawn? I can certainly relate to that saying. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">My posts have been dark as of late, full of worry tinged with despair, colored with a lot of frustration. I was honest with what was going on with Bo, in our home, and in my heart. It was a difficult time for all of us, much of it based on the reality of daily behavior we felt we couldn't control, but some of the difficulty was based on the fear that we would <i>never</i> learn to control it, to control him. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Although Bo is our eighth child, in many ways we feel very much like first time parents. He has issues we've never before encountered, coupled with the fact that we are still, eighteen months in, getting to know this little boy whose first three and a half years of life are virtually a mystery to us. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Like a first time parent, my instinct is to react to every negative behavior like this is how it's always going to be. When my current bag of parenting tricks fails to produce results, I'm overcome with despair that we don't know what we're doing. When, in reality, he just may need more time to learn consequences to behavior and we just may need more time to learn antecedents to it. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Together, we're figuring it out. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">He did get an autism evaluation (although it was a terrible excuse for one, in my opinion) from an autism center. In retrospect, seeking an evaluation from a place with little/no experience in Down syndrome was a mistake and he did not receive a diagnosis of ASD. Rather, he was tagged with the cop-out diagnosis of "global delays." Awesome. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Immediately following that dismal experience, we had the privilege of attending the National Down Syndrome Congress Convention here in Indianapolis. We took most of the workshops on the ASD tract. I can tell you that every video and description that was shared fit Bo like a glove. We came away absolutely assured that we are not crazy, that we are not alone, and that our son indeed has a co-existing diagnosis of Ds-ASD. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">And we can do this. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Before we even had a chance to implement anything we'd learned, Bo was already making progress. While throwing, spitting, pinching, and biting are still in his repertoire, they are not constant or even anywhere near it, anymore. We are less likely to be dodging flying food during meal times, too. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The biggest change I have noticed is on the playground. A few weeks ago, I took these pictures of him experiencing the playground in typical Bo fashion. I missed photographing the end of our time at the park when he was pouring mulch over a lady's foot and trying to remove her shoe. I also neglected to get a picture of him sampling the mulch for taste and texture. Ew. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">He could lay in the bubble for HOURS!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">He rolls these over and over and OVER.</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-xn8aTYD4X7Q/U9fN1L8EQSI/AAAAAAAATmY/VYcE-qBtu2I/s1600/20140715_155116.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-xn8aTYD4X7Q/U9fN1L8EQSI/AAAAAAAATmY/VYcE-qBtu2I/s1600/20140715_155116.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">As soon as KJ came to join him, he scooted out of the way. Soon after, he turned away completely.<br />
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<span style="font-size: large;">Last week, we went to the park and I didn't even have time to take pictures because I was too busy keeping up with him...as he appropriately explored every aspect of it. He climbed the stairs and went down the tunnel slide at least a dozen times. He climbed through tunnels, climbed a ladder (with close supervision), and was aware of other children waiting behind him, once even letting one pass without cuing. When other kids were around, he didn't shut down, but continued playing. He retreated to the mulch only once, but was easily redirected to the sand box. (Where he still sampled it and I tried really hard not to think about it. Ew.)</span></div>
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<span style="font-size: large;">It was a great day and a HUGE gain for our little guy! We are looking forward to seeing what he'll show us next. </span><br />
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Tarahttp://www.blogger.com/profile/12808674825863044909noreply@blogger.com2