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Me and God?

September 20, 2013 By Kelle

So whenever I touch on faith and my past church conflicts on the blog, I get a lot of e-mails—most of them really kind—from readers who are interested and/or concerned.

Some sound like: “What the hell happened in your faith past?”

Some sound like: “Honey, run to Jesus and stop pushing him away. You’re going to lose your chance.”

And most sound like: “My faith brings me so much peace in my life. I am praying for you. I’m so sorry your past has presented issues with God. I hope you figure it out. God loves you so much. Just the way you are.” These ones feel like a hug.

I will write more about my faith past. I am writing a lot about it off line. I realized after Bloom, many have conflicting faith pasts.

It is hard to write about because it involves people. People I love. People who read this blog. People who loved me and offered me a lot of good and support as well as their version of faith. But I was told a lot of things about God that I don’t think are true anymore, and not only do I think they’re not true, I think they are very damaging. I realize I have to fight tendencies that make me want to view myself and the rest of the world in a skewed way, due to ten years of input and reactive behavior to that input. And all the people who were involved in teaching me this—I still love them. We are human, we make mistakes.

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Last night’s moon.  Feel’s fitting to include.

The basis of what I believed for a very long time, along with a lot of weird stuff that went along with it, was that God commanded and demanded us to be PERFECT, no exceptions. “Examine yourself” was a phrase frequently thrown around, and I’m not talking a shower breast exam. If there was sin, sinful feelings, sin-like thoughts, anything that resembled sin (“even if you don’t sin but you’re thinking about sin,” we were told), you were going to hell. So, in order to please God, we were basically trained to become professional Sinbusters, constantly examining our thoughts and everything we did to make sure we weren’t sinning. It was exhausting. There was lots of repenting, might I add. For years, it was a completely normal thing for me to walk into the house, call “Is anybody home?” and if someone didn’t answer within twenty seconds, I was immediately paralyzed with fear that the rapture came and I didn’t go. Beginning around nine years old. I had countless nightmares that I was left after the rapture or that I died in a car accident and went to hell. Because of that one little feeling of resentment or jealousy or unkindness I felt.

A lady once stood up in our church and repented to the entire congregation, kids included, for her sin. You want to know what her sin was? Going to a garage sale, seeing a jar of buttons for a dollar and buying them. Why, do you ask that’s a sin? Because she saw another lady eyeing them and she bought them anyway. I guess it was unkind not to offer them to the other lady who wanted them. Not only unkind but SIN. Sin that sends you to hell. And when people heard this, they shook their heads and said “Amen” and applauded her for her stellar sin detection skills—a Class 1 Sinbuster (okay, we didn’t really call them that). And I remember even at twelve years old, listening to this story and thinking WHAT. THE. HELL. But then I repented later for thinking “What the Hell” because I didn’t want to go to hell. When hell was described in sermons where children were present, nothing was held back. “Gnashing of teeth” was a common phrase because somewhere in the Bible it says that about the people who burn there. And we were told that it’s so hot and miserable and tortuous that people BEG God to forgive them, but NEVER. They were already warned, it’s over. It was important that we knew that time never ends in hell. As a kid, I’d ask things like “even longer than 100 years?” and be answered with things like “100 times 100. Time NEVER ends in hell.” Imagine going there all over a jar of frickin’ buttons. In all fairness, we knew that heaven never ended either. This was supposed to be a really exciting fact, but A: the hell thing kind of took over, and B: heaven was described as endless sitting around listening to Jesus teach and singing for hours, and—well, that sounds kind of boring, even now.

This is one among hundreds of stories like it. Ten years of repenting, waking up with sweaty palms and a racing heart from rapture nightmares. I was never good enough for God, and I knew it. I couldn’t shut off sinful thoughts and while I smiled and told all the church people when they asked (and they did) that I was Tony-the-Tiger Grrreeeeeaaat with God, I knew inside that I was doomed for hell.

When we were feeling the energy to extend beyond our own heart examinations, we took it upon ourselves to do it for others too—telling people when they were in sin. Separating from them. Cutting off anyone who “called themself a Christian” but lived otherwise according to our superhuman standards. We cut my cousins out of my life. My grandparents. I didn’t see my dad for four years because he was gay, gay was wrong and 1 Corinthians says, “put away from among yourselves that wicked person.” It also says you couldn’t eat with these people. So we didn’t. One time, when we were still seeing my dad, we went to a restaurant and sat at a different table—just me and my siblings—while my dad sat alone in a booth behind us. I was nine.

All the things that could send you to hell—I realize now that they are the things that make us human. Imagine. Going to hell for being human. So you had to be something better than human, a perfect subspecies. I carry remnants of these feelings today. As if we don’t have enough guilt to deal with in motherhood and trying to do it all. It’s okay to be human, I say to myself a lot. It’s okay to be human. If you need to know this, I’m your girl.

I get hung up on wanting to know the answers to things I might never know, but I’m okay. Me and God? We’re good, we’re getting there, and sometimes, many times, we are beyond good–a peaceful, settling, oh-so-loving “so this is what it’s supposed to feel like.” As far as Jesus and the Bible and all that other stuff—well, I don’t know. Telling me to run to Jesus is like telling a beaten dog he should come out and trust people. I heard a song the other day that said “Get out of the box and come into the clear,” and I think that’s a good description for where I am. I don’t ever want to be in a box when it comes to anything in my life. There’s a giant clearing around it, and it’s full of daisies and sunflowers and grass as far as you can see. There are so many more experiences to learn and grow in the clearing than I could ever find in the claustrophobia trap of the box. I think God is in the clearing. And I know he wants me to run around and find him in the many places he exists. It’s a challenge.

Our old church has pretty much dissipated. I don’t see “church” now. I see humans. Humans who make mistakes and get confused sometimes. I may not have always felt that God loved me, but I did feel love from people. And I always felt loved and accepted by my parents.

I realize that my church past is a unique situation, and I’m so glad there are churches around the world that do so much good. Can you imagine a world without church? We’d lose a lot of comfort, a lot of good and a lot of love for people who need it. I’m so glad there are churches.

The thing about God that I hang on to the most? It’s being loved simply for existing. I think that’s a pretty powerful thing.

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As for the rest, I’m going to take this broken glass and glue the shards together to make some amazing stained glass windows. I’m going to build a cathedral. Actually, I think I’ll just shoot for a little hillside chapel. With lots of love. And a nice mix of dandelions and daisies on the hill. So much better than a cathedral.

The regular blog will resume next week. It was ETST Deep Week. Kind of like Shark Week but with less blood.

Oh, and HAPPY FRIDAY! (confetti, confetti, confetti!!!)

Filed Under: Faith, Favorites 296 Comments

Down Syndrome: Where We Are Now

August 14, 2013 By Kelle

I’ve been meaning to write this post for a little while now. I frequenty receive e-mails requesting how Nella’s doing, what therapies we’re using, where we are on this journey with Down syndrome, and I tuck them away with the intent to respond to as many as possible in one post. For past posts responding to questions about Down syndrome, you can look here and here or click on the “designer genes” tab on the right side of this blog to see a list of posts regarding Down syndrome.

Three years isn’t nearly long enough to truly understand all the issues within the world of Down syndrome, but it’s long enough to understand what I feel is most important–that there is so much this little girl has to offer the world and that we possess the unique privilege of helping her believe and achieve that truth. And in doing that for our little girl, we’re going to learn a lot about how we can help do that for others.

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Today, Nella is three-and-a-half years old. She is healthy, growing and eats pretty much whatever we give her, but her favorites are spaghetti, yogurt, popsicles and ice cream. She can run fast, jump, ride a tricycle (just starting!) and Lord have mercy, can she dance. Arms in the hair, hips to the side, bootie right down to the ground. Dance is her language–spoken so fluently that sometimes when I watch her in those moments where her body is so clearly feeling the music and expressing the happiness in her soul, I’m brought to tears. That’s how I want to live my life, I think.

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We still receive occupational and physical therapy each once a week from the husband and wife team who has been working with Nella since she was teeny tiny. They are like part of our family. For physical therapy, Nella is working on a lot of toddler play activities like riding bikes, throwing and catching a ball, etc.

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For occupational therapy, we continue to work toward school skills like holding a pencil, drawing shapes (not there yet), copying lines, cutting paper, etc.

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Brett and I have noticed over the past three years that there are great peaks in her development that will last for a few weeks where there are so many new discoveries, new words, new tasks, but that there are also plateaus where she needs time to chew on what she’s learned and chill out for a while. Brains need breaks, I get it. I have also noticed that Lainey has peaks and plateaus in her discoveries too. Yes, maybe they’re different and more significant, but usually these “Down syndrome things” that we deal with are versions of “Not Down syndrome things” every kid deals with.

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We are in a peak right now, celebrating a beautiful burst in her development. She’s talking a lot more, and every week there’s a moment where one of us says something along the lines of, “Oh my God, did she seriously just say ‘Lainey took my book’?? Did you hear that?” and Brett and I will both run over, smiling, clapping, asking her to repeat it. Those moments? They belong to our whole family. They are special. They are marriage-bonding and family-appreciating. We might have old tile with dirty grout, but I’ll be damned, our three-year-old just said “Lainey took my book”!

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We have two years before kindergarten still, and right now we are planning on sending her to public school when that time comes. We both feel home is the best place for her this year, especially since we are able to swing it. I’ll be doing some homeschool preschool work with her and will be introducing more socialization opportunities with ballet and more structured playdates. We are hoping to do a couple mornings a week at a small preschool next year to help make the transition to kindergarten a little easier. During the transition out of our Early Steps program (at three years old), we had our first IEP meeting with the public school, and I was so pleased with how kind and helpful every individual we worked with was. I’ve heard from many of you sending your kids with Down syndrome off to school for the first time this year, and I’ll be honest–there’s a little heart lurch thinking about it. So much good awaits–I know that, but yes. There’s that place inside where we hold any apprehension, fear and sadness for the extra challenges our kids will face, and sending our kids to school creates vulnerability–opens the door a little wider to that place inside.

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I want Nella to have as many opportunties as she can to live a happy, fulfilling life. I cannot change the physiological parts of her body that limit her, but I can do what mama bears do. We love like it’s our job. We work hard. We push our kids so that they learn how to survive because when they survive, we survive. So, I push her. I push her to try new things, to explore the world, to meet new people and to be adventurous. Right now, we’re working on letters and words, and I try and use every opportunity to drench her precious brain with information. I was given a great curriculum to use a few weeks ago from a mom and former teacher who developed Wordy Worm after struggling to teach her son with Down syndrome how to read. Her son is now in his thirties, lives independently in Fort Myers and has a great job and fulfilling social life. I love this easy-to-teach curriculum, and can’t stress enough how important it is to begin teaching literacy strategies early.

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I know this as a teacher, as a mom, and as the humble student of so many incredible parents who are ahead of me on this journey. Drench their beautiful little brains with knowledge and experiences and don’t think for a hot second that your child can’t learn.

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This past year, I’ve spent a lot more time with adults who have Down syndrome, and I’m learning a lot. I can’t even explain it, really, because I’m in the middle of it. My heart, my perceptions, my ideas on all of this–they’re being molded right now, so there’s an “Under Construction” sign hanging somewhere within.

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Having a pretty public blog and being recognized in the special needs community, I try to be aware of politically correct terminology and sensitive issues. I’ve backspaced posts and held back from saying things many times because I’ve thought “that’s going to offend someone” or “they’re going to think–” too many times. I’m really trying not to do that anymore. Whether you like the way we’re handling Down syndrome or not, whether you think I’m a good advocate or not, if you’re in the special needs community, let me tell you something: We’re in this together. Can you hear me? WE’RE IN THIS TOGETHER. We’re figuring it out. We’re all hurting in some way or another because we know our kids have struggles. That bond in some way makes us family. I promise I don’t ever mean to hurt any of you. But we need each other. Our kids need us–ALL of us. And we’re going to think a lot of different things, some that contradict each other. But I’d like to think that someone out there needs to hear something that each of us has to say. If you say it’s blue, there’s someone out there who needs to hear it’s blue and you just made their life so much better by being blue. Thank you for being blue, even if I’m not. If I say it’s green, there’s someone out there who needs to hear it’s green, and thank God we can be green together. Blue and green are both good. I’d hate for the world to lose one of those colors.

I know I’m rambling. I’m sorry. But there’s just so much I’ve been wanting to say.

I’m in a constant place of figuring this out, and based on the way I’ve grown, the things I’m learning, the love I’ve felt–well, I hope I never graduate from figuring it out, because this is such a good place.

I know I don’t specifically write about Down syndrome a lot because I don’t specifically think about it a lot. I have three kids. I take pictures of them. I like happy things and funny things and colorful things and pretty shoes. I will write about those things. And sometimes I’ll write about hard things when they come. That’s about all I can offer. But when I feel like there’s something about Down syndrome I’d really like to share, I’ll bring it here for you, and you can do what you like with it. I bet there will be a lot to write about when Nella goes to school.

Life has changed a lot in the past three years, and we continue to move forward, exposing our kids to the world we want them to know and following our own paths of exploration. Does it still hurt? Well, early this summer I did a three-day recording for the audio version of Bloom. It was the first time I ever read it aloud and the first time I even looked at it since the last edit. I smiled through a lot of parts that I’ve moved on from, a different girl with growth. But that part when she was born? That line where her eyes first looked at me and asked me to love her? I couldn’t do it. I choked five, six, seven times in a row–unable to speak, catching my breath, paralyzed by the weight in my chest until finally I asked the producer on the phone line to give me a minute. “Take all the time you need,” he said. Yeah, it’s still there. And I’m so thankful that it is. It’s part of who I am. It’s part of who our family is.

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We all have our pain, our issues, our struggles that make us who we are. I value mine. I need that pain and struggle to contrast all the good, the growth, the happiness. Juxtaposition–an important element of art.

Having a child and loving them so desperately turns you inside out. There’s no greater pain than knowing that your child is hurting, and that’s what this is all about–we don’t want our kids to suffer. Having a child with physical and mental challenges means that there’s going to be added suffering, and I carry that with me every day.

The best way I know how to deal with that is to accept Nella for the beautiful girl she is and to make every effort to help her soar, to live a life of enjoying the things that were given to us so that my child learns how to do that too. And if I can make a dent in the world around me, possibly inviting them to accept people with differences and make efforts to help them soar–well that would be awesome.

So in closing this post, thank you for joining me in figuring things out. The world is beautiful, huh? Let’s continue to make it that way–for every person. Blue and green, baby.

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And a little video of Nella learning: (sidenote: the puppet in the video is one of Nella’s favorites. A while ago, I did this funny thing in the morning where I made the puppet go get me a cup of coffee and Nella helped pour the half-and-half. Now every single day, Nella brings me the puppet and says “C’mon, coffee,” wanting me to repeat the exact same routine. So we do. Every day.)


So much love to all of you tonight.

Filed Under: Down Syndrome, Favorites 283 Comments

Six Years: Secret Agent Party

May 20, 2013 By Kelle

It’s been an event filled week–the kind that seems impossible to hold all that it did; but here we are, the Monday after, and there’s a mind cellar full of newly canned memories to last us a very long time.  Thank God I got the analogy of the day over with.  That was stressing me out.  Moving along…
More later on reuniting with old friends.  For now, someone had a birthday this weekend–the little someone who transformed years of dreaming about being a mama into reality.

Our girl is six. 

After my dad gave her a giant fake diamond for Christmas and we used it as a prop in “Find the Missing Diamond” secret agent games, she decided she wanted a secret agent birthday party this year.

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And my dad thought it was so cool that Lainey was born in 2007, the last three digits being 007, of course. Whoa, right?  I mean, we had to do the secret agent thing at some point.  So, a roll of crime scene tape and a few fake passports later, we had ourselves a TOP SECRET soiree for the C.I.A.’s newest agents.

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Cupcake toppers: Top My Cupcake Etsy shop

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With utmost attention to protecting the agency’s classified files, all new secret agent recruits were welcomed with thorough background checks.  Alias creation (ranging from sophisticated names like Rebecca to imaginative alternatives like Sparkle and Stink Bomb), fingerprinting, print scanning–we don’t mess around here at the C.I.A. 

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Very cool app called Finger Scan that makes you feel all Mission Impossible.

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Once all agents were cleared, we set off to follow a series of clues to solve the mysterious case of The Missing Diamonds. 

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Left: A password hidden in one of the agent’s hats.

After finding some evidence of shed fur, a few dog food kernels and a leash hanging from the tree, the agents concluded Sophie & Latte stole the diamonds.  Until a sweet little wide-eyed girl piped up, “But how could dogs steal diamonds?  They don’t have any hands!”  This is true.  This is true. 

But they have good digging paws which came in handy when those sneaky dogs buried the diamonds in the woods.

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Moral of the Story:  Kids are smart.  Or something like that. 

And the rest goes something like a good party means the house gets trashed.  I’m still picking up from the house being overtaken by little agents, but it was worth it.

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Inexpensive table cloths: Cover tables with butcher paper, stamp it everywhere with a CONFIDENTIAL stamp, roll a line of crime scene tape down the middle.

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And look–our youngest agent. 

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Coincidentally, this weekend’s recruit training included sleeping through the night for him (twice!). So yes, Agent Dash has been promoted.

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I’m finding mustaches stuck to everything, and Lainey now wants every activity to include clues.  But it was a good day followed by a sweet night of remembering just how incredible these past six years have been.

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Kids clothes have a toddler “T” that follows all the sizes until size 6.  Then it just stands there all alone, no “T” to soften the blow of this-kid’s-getting-big.  It comes with so much good though, and as she grows, so do we. 

Another birthday.  More Love.

Happy Monday, Friends.

******

Party Details: 

All print goods I made.  I used Top Secret free font from DaFont.
Fedoras, magnifying glasses, passports, glasses (popped out the sunglass lenses), white lunch boxes, mustaches, black notebook and pen sets: all Oriental Trading.
T-shirts: 5-pack white Hanes t-shirts, painted black tie.
Party Music: Downloaded Mission Impossible and Secret Agent tunes from iTunes

And thank you to Heidi who took most of the pictures in this post so I could tend to C.I.A. duties.

Filed Under: Favorites, Parties 79 Comments

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