tag:blogger.com,1999:blog-18358718597159779792024-03-19T02:24:23.325-07:00Our Cora BeanLeahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.comBlogger462125tag:blogger.com,1999:blog-1835871859715977979.post-17357201038518040782016-10-31T10:18:00.003-07:002016-10-31T13:43:58.375-07:00Down Syndrome Awareness and AcceptanceWell, it's October 31st. The 31st day of Down Syndrome Awareness month. For the last five years, I have chosen to honor it by posting here every day. But this year, I didn't want to do that.<br />
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Partly, it's because my gradually dwindling posts on this blog have been intentional. I want to honor Cora's privacy and not share too much of her here. And equally responsible is the fact that I've been feeling that what I do have to share feels muddy and mixed up and is sometimes hard for me to sort out.<br />
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<span style="font-size: large;">Of course, I can always share about how wonderful Cora is.</span> And she is. Of course she is. She is beautiful, radiant, and delightful. She is so loved, and for such good reason. <br />
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She is in full-swing in her kindergarten class these days. She is learning alongside all her peers. Learning to write, learning letters and letter sounds, and sight words. She has developed impressive skills with scissors, and has already cut her bangs twice in the last few months. Just yesterday, she drew her first recognizable drawing. She has so many friends, and we get to see kids greet her with delight whenever she appears. One of her friends regularly announces his intent to marry her. Another of her classmates has told me that Cora is her best friend.<br />
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She impresses us every day. Because she is a wonderful kid. She is a wonderful kid who has Down syndrome. It affects most things about her, from how she processes the world, to how she learns and communicates. It is a part of her that is inextricable from who she is. So I can share how wonderful my little girl with Down syndrome is and hope that that counts as my part of awareness, but lately that just doesn't feel meaningful enough.<br />
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The things that have felt meaningful to me lately are things that I've been reluctant to share. Because they're not all sweet, rosy, feel-good sentiments. They are complicated and stressful and concerning.<br />
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They're not specifically about Cora, but about the world we live in. <br />
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So I struggle with what to focus on. I can choose to focus on the things for which I am grateful; the things that make us so lucky. We are so lucky that Cora is in a wonderful classroom, with a fabulous teacher, a teacher's assistant and an amazing paraprofessional. We are so lucky that she is in a school and district that wants to include her in a regular general education classroom. We are so lucky that she has a dedicated and loving special education teacher to help her and oversee her schooling.<br />
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We are so lucky that our family lives in a community with diverse and incredible resources for families supporting people with disabilities. We are so lucky that I had the opportunity to participate in a year-long training program to prepare our family to support Cora in her preparation for and entrance to kindergarten. We are so fortunate that I had the time to spend learning, seeking out resources, and preparing to advocate for Cora's education.<br />
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We are so lucky that our community loves and supports Cora.<br />
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We are so lucky.<br />
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But so many people aren't. Many don't have easy access to support resources, or the time to pursue those resources. Many of my own friends are in battles with school districts over their children's access to a fair education. Many are long, intensive, exhausting legal battles that drain them of time, money, and energy.<br />
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My family is so fortunate. But the fact that I feel that way is so disheartening. It is so sad to me that our positive experience is considered so special when compared to that of so many others. It is so frustrating that it is necessary to spend countless hours preparing to advocate for my child.<br />
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So much of it is so frustrating to me. So when I choose not to share many of my thoughts, it's largely because I am so full of concerns and disappointments and don't know how to convey them without seeming to be consumed by the doom-and-gloom. That doesn't feel very helpful.<br />
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It's a tricky place to be, and one that takes up so much of my energy of late. There is the part of me that perseverates on the problems, and the part of me that just wants to celebrate and support my wonderful child.<br />
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My simplest truth is that this girl deserves so much. She deserves to be the valued, beloved child that she is. She deserves to be seen for who she is, and to participate just like everyone else. She deserves the supports that she needs to help her be successful. She deserves a great community, and a school that supports and appreciates her. <br />
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She deserves it all. And it's our job to help her access it. It's our job to educate and advocate and give her opportunities, choices and experiences. I just wish that we lived it a world where it didn't need to be such hard work.Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com244tag:blogger.com,1999:blog-1835871859715977979.post-74454459068345477002016-09-06T12:55:00.001-07:002016-09-06T12:55:20.374-07:00Our Kindergartner<div style="text-align: center;">
<span style="font-size: large;">We have celebrated so many of Cora's milestones.</span></div>
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<span style="font-size: large;">Finally bringing her home from the NICU.</span></div>
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<span style="font-size: large;">Having heart surgery.</span></div>
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<span style="font-size: large;">Learning to nurse.</span></div>
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<span style="font-size: large;">Learning to eat.</span></div>
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<span style="font-size: large;">Learning to sign.</span></div>
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<span style="font-size: large;">Learning to walk.</span></div>
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<span style="font-size: large;">Becoming a big sister.</span></div>
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<span style="font-size: large;">Going to preschool.</span></div>
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We have celebrated a myriad of big and small accomplishments that have each seemed to be momentous, many of them because she worked so very hard to get there. Like learning to ride a tricycle, jumping with both feet off the ground, getting to be a great climber, starting to speak in small sentences, making lots of friends, and giving herself a haircut with my crafting scissors.<br />
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And now we are celebrating a step that through it all seemed to loom and intimidate, that seemed so daunting and exciting and terrifying: <span style="font-size: x-large;"> <b>starting kindergarten.</b></span><br />
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<span style="font-size: large;">Cora started kindergarten last week</span>.<br />
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She took it in a stride, walking proudly and confidently into the classroom, saying hello to everyone in sight and offering luminous smiles and high-fives. She hung up her sweater and backpack, took her seat and yelled, "Bye Mama! Bye Ruby! Bye Daddy!" as she settled in and didn't look back. She took that school by storm.</div>
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Already everyone seems to know who she is. The adults at school all greet her when she walks past. When we're out on walks, kids from doorsteps shout out hellos as we go past. While tired, she seems to be transitioning so smoothly. She is overjoyed to go to school each day.<br />
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It's me that has been nervous and anxious and alternately terrified. It's me that spent hours, days, weeks, months and even years preparing to be her advocate and to support her in an inclusive placement in our neighborhood school. It's me that felt like there was no way I could be enough; that the struggle would be too much. It's me that followed the stories of so many friends that have come before, many who also fought to have their children included in school, and many who didn't win the fight. I've watched as so many kids went to segregated classrooms designed only for children with disabilities or significant needs.<br />
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The number of children with disabilities who actually get to go to school in general education classrooms with the rest of their same-age peers is painfully low in most states in the U.S. The laws may support educating children in the least-restrictive environments, but it is not always what districts are willing to accommodate. It is one of the many ways that people with disabilities continue to be marginalized today.<br />
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So as we walked into school with our amazing little five-year-old daughter with Down syndrome and greeted her new school, we were all very proud. Proud of our daughter, our family and of all that we've learned. We are lucky to be in a school district that welcomes her. And we are proud to be starting this journey we've prepared for for so long.<br />
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And I am learning to set aside my anxiousness and protectiveness and am learning to trust her to go forward into the world. It is hard and it is bittersweet. But I am so, so proud.<br />
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<span style="font-size: large;">She is here. And she is making waves.</span><br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com90tag:blogger.com,1999:blog-1835871859715977979.post-80614814006165929642016-06-01T11:55:00.002-07:002016-06-01T13:47:27.737-07:00Bittersweet Endings. Bright New BeginningsTomorrow is Cora's final day of preschool.<br />
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This simple fact has been causing my breath to catch in my chest for the past several days. This little girl, this piece of my heart, has somehow gotten to this moment, and it feels sudden and shocking and bittersweet.<br />
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I was so terrified when she began school. She was so tiny.<br />
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She didn't speak. She was starting at a community cooperative preschool that expected kids to be able to use the bathroom independently, serve and clean up after themselves and negotiate a new, exciting and scary world. She would be going outside to an enormous playground with adults watching from the sidelines, when all summer I had been one step behind, spotting her all the way.<br />
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She had only started walking a few months before. She hadn't begun to potty train. She could sign fairly proficiently, yet nobody at her new school knew sign language. Her new teacher had no experience with children with intellectual disabilities. There were so many worries to add to my list.<br />
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<span style="font-size: large; text-align: center;">Yet look how far she has come. </span><br />
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Today, when I dropped her off at school, a crowd of four boys started yelling from the playground and running toward us, yelling "Cora's here!" As the kids walked in a line, hopping into the building, I witnessed a small skirmish between two young boys. One of them bitterly responded that the other boy wasn't his friend, to which the other child said, "Yeah, well <i>I love Cora</i>." "No, <i>I love Cora!" </i>came the counter-attack.<br />
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After Cora gave me a final hug goodbye, I walked away, trying not to let the other parents see me holding back my tears.<br />
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So yes this week feels awfully bittersweet. <br />
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Don't get me wrong. We are so excited for next year. We are thrilled that Cora will be going to her neighborhood school alongside peers of all abilities in the general education classroom. We are delighted that the kindergarten teacher that attended her IEP meeting specifically requested that Cora be in her classroom, and called me on my phone a couple weeks ago to tell me that she was excited that Cora would get to be in her classroom and also in her Early Kindergarten Transition program for a few weeks this summer. We are excited <b><i>and</i> terrified</b>. And we are so so hopeful. For we know that this is one more step in Cora's process of learning to navigate this world on her own two feet. Yes, she will have a lot of help. Help from us, from her teachers and therapists, from her friends and family. <br />
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<span style="font-size: large;">But it is she that is leading this path.</span><br />
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It is she that is sharing her soul and her joy, and her marvelous and uncanny ability to get and give so much love. She is the one who shines, who surprises people and who makes connections wherever she goes. It is <i>her</i> path. And we are here to follow her and support her as she goes.<br />
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As the school year has been winding up, I've found myself getting frustrated with the work involved and eager to leave this phase behind. But now I am seeing what we are leaving and looking at it through new and sentimental eyes. And I'm thankful for these moments, when I'm given the chance to have this clarity to appreciate just how important an experience this has been. Cora has community. Cora has friends. Cora has adults and children who care about her and want to see her do well and be happy.<br />
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<span style="font-size: large;">Cora has made a mark, as we always knew she would.</span><br />
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And so we will leave this phase behind, acknowledging the marks she's leaving behind her and looking forward to the many yet to come.<br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com16tag:blogger.com,1999:blog-1835871859715977979.post-53965692537534021792016-04-10T13:50:00.000-07:002016-04-10T13:50:43.613-07:00On Sibling DaySomething that feels like magic has been happening around here.<br />
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These two little girls, who have always adored one another, have recently started playing together <i>all the time.</i> We can usually expect bursts of 15-20 minutes of giggles and running around before Cora gets her feelings hurt and someone needs to intervene.<br />
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But in the past week, they have amped up their play time exponentially. We're talking <i>hours</i> of racing around, chasing one another, making up sweet little games of "Follow me!" "Now you do it!" "My turn," all set to the tune of the most infectious giggles.<br />
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Sweet, unsolicited choruses of "I luh you, Wuuby!" and "I yuh you, Co-wa!" punctuate the giggles. Funny conversations and negotiations keep me smiling as I watch them skip through the house.<br />
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For Cora, who has almost always wanted near-constant interaction, most of which had to come from me, this is a big deal. And for Ruby, it is priceless too.<br />
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It's making me start to think about how things will go next fall, when Cora goes off to full-day kindergarten. I've been so wrapped up in preparing for her upcoming IEP meeting and working to secure the ideal supports, services and placement that I often forget how very strange it will be to send her sweet little self off five days a week for several hours. I forget how much we will miss her. For me, it will be a big transition, one that I am sure will be accompanied by a lot of tears, but for Ruby it will come as a big shock. Her companion, her sweet silly sister.... her <i>best friend</i> will be gone a lot.<br />
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I guess the silver lining is that I will finally get some of the one-on-one time that I so appreciated with Cora and haven't gotten much chance to have with Ruby. But oh, we will miss this big sister girl.<br />
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We have a few more months of this precious time. Time to watch these two grow and change, and get ever closer.<br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com11tag:blogger.com,1999:blog-1835871859715977979.post-40262278737939242752016-04-06T11:43:00.001-07:002016-04-06T11:43:35.435-07:00Happy Heart Day- Five YearsToday is a day to celebrate just how far this little girl has come.<br />
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5 years ago today she went through something unbelievable just to get the chance at this life. 5 years ago today I trusted the nurses, doctors and surgeon enough to hand off my tiny baby for her heart to be stopped and made whole. <br />
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It may have been the hardest thing I've ever had to do, but my daughter seemed to take it in a stride. She was no longer sickly and gray, struggling to breathe, and unable to eat. She could grow, she could nurse, she could thrive.<br />
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And look at her now.<br />
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Today I celebrate this amazing little person. This girl who has grown so much, and who has been the reason I've grown so much too.<br />
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We pulled out the book that shows the story of her first year. We flip through the pictures and tell her how when she was a baby she was very sick and needed an operation to fix her heart. She pores over the pictures, saying "Poor baby Cora. So sick.' She touches the photos that show the wound on her chest and feels sorry for her baby self. "So hurt," she croons. Then she tells me "All better," and turns a few more pages to see her baby self smiling and laughing, getting cuter by the minute. "Baby Cora's so cute..." she says. We look at the scar on her chest, a white line that stretches the length of her sternum. We talk about how strong and brave she is, and how wonderful that her doctors helped fix her heart.<br />
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It makes me happy to hear her tell the story of her heart repair with her short little sentences. I get tingly with pride when she shows me her scar and tells me how her body can heal. It makes me smile through a few tears seeing just how far she has come.<br />
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Happy Heart Day, my love.<br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com12tag:blogger.com,1999:blog-1835871859715977979.post-45569354774584136112016-03-16T10:54:00.000-07:002016-03-16T10:57:15.157-07:00The Parent's Guide to Down Syndrome<span style="font-family: "arial" , "helvetica" , sans-serif;">A few months ago I was asked to review an incredible project: a new book called <u><a href="http://advice%2C%20information%2C%20inspiration%2C%20and%20support%20for%20raising%20your%20child%20from%20diagnosis%20through%20adulthood/" target="_blank">The Parent's Guide to Down Syndrome; Advice, Information, Inspiration and Support for Raising Your Child from Diagnosis to Adulthood</a></u>, by Jen Jacob and Mardra Sikora. This book has been heavily promoted among parents in our community, and has been the result of an intensive collaboration.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I was happy to have the opportunity to contribute a small part to the section on open heart surgery, and have been excited to review it here on Our Cora Bean.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I began reading my free copy of the book in January, just before my sweet girl's fifth birthday. Most of the time the events and feelings surrounding Cora's birth and first few months of life feel like they're in the distant past and are so far removed from my current reality. So I was honestly surprised to find myself drawn so viscerally back to my initial feelings and memories from those early days. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We learned of Cora's Down syndrome diagnosis after she was born, and I spent my days during her NICU stay stationed by her isolette, poring over books like <u>Babies with Down Syndrome.</u> Without the convenience of a smart-phone or access to the internet, and with very little real knowledge about Down syndrome, that information felt like my lifeline. I loved the information, the photographs, the parent accounts and the descriptions of what to expect during early childhood. But it still felt like information was missing, and I found myself having so many more questions.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now, as I watched my almost-kindergarten-aged daughter race around the house giggling with her sister, I was again reading a comprehensive book on Down syndrome designed for new parents, but this time I found myself not only wiping away tears, but nodding my head in agreement, and being heartily impressed by the resources and varied perspectives that the book offers. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The book starts with explanations and definitions, works through the diagnosis (both prenatal and post- birth), gives input on finding support, processing and sharing the news, and then moves into common experiences over the course of your child's life. It covers medical care, surgeries and hospital stays, feeding, and many other challenges of those early months, as well as insight on day-to-day life. As the book progresses, it discusses your child's education, therapies, and the journey from infancy to adulthood. It touches, at least briefly, on a comprehensive range of concerns and experiences and seeks to give the reader a big picture, while offering details and resources for more information at the end of each well thought-out section.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Throughout, personal accounts from parents, siblings and people with Down syndrome pepper the pages, (including some of people I know online and in real life!) giving insight into the evolving and varied points-of-view of the families, and offering the immensely valuable perspective of individuals with Down syndrome. So often it is the families of people with intellectual disabilities who speak for them, so including a range of voices of those <i>with</i> disabilities is invaluable, allowing us to see the people the book speaks of as real, whole, valuable individuals, and also helping to offer a glimpse of future possibilities to parents concerned for their children's futures.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Overall I was impressed with the range of information covered and the large number of voices included. But out of all the great things included in <u><a href="http://www.mardrasikora.com/parents-guide-to-down-syndrome/" target="_blank">The Parent's Guide to Down Syndrome</a></u>, my favorite may be the oft-repeated reminder that each of our children are unique, and that their experiences will be their own. When your child is a baby, especially a baby with a diagnosis that brings with it stigma and so many unknowns, it is natural to seek out the one right answer, the one right experience, the one example that will show you a picture of your child's life, and your family's lives by proxy. But this book wisely points out that there are no right answers or right experiences, that the path of each of our children and each of our families will vary widely, and that that is part of the beauty. If each parent reading this book were able to truly take that to heart early on, I'm sure it would help alleviate much concern and worry.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">For me, as I fret about the upcoming IEP process that will determine so much of my daughter's future for the next dozen years, it is a poignant reminder to read Jen Jacob's words, <i>"Life is, of course about the journey for our children, but also so much about our often-parallel journey alongside them." </i>I appreciate the opportunity to recognize and respect my daughter as the unique and amazing person that she is, while still recognizing the important role that we, her family, play as we support her along her way.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Interested in getting your own copy of this book</b>? </span><br />
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<li><span style="font-family: "arial" , "helvetica" , sans-serif;">You can <b>buy it here</b> on </span><a href="http://www.amazon.com/dp/144059290X" style="font-family: arial, helvetica, sans-serif;" target="_blank">Amazon</a><span style="font-family: "arial" , "helvetica" , sans-serif;"> or </span><a href="http://www.barnesandnoble.com/w/the-parents-guide-to-down-syndrome-jen-jacob/1122472605?ean=9781440592904" style="font-family: arial, helvetica, sans-serif;" target="_blank">Barnes and Noble</a><span style="font-family: "arial" , "helvetica" , sans-serif;">.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">You can <b>enter the giveaway on Our Cora Bean</b> to win your own copy! Enter here: </span><a class="rcptr" data-raflid="a6d853ad1" data-template="" data-theme="classic" href="http://www.rafflecopter.com/rafl/display/a6d853ad1/" id="rcwidget_q238dk22" rel="nofollow" style="font-family: arial, helvetica, sans-serif;">a Rafflecopter giveaway</a><span style="font-family: "arial" , "helvetica" , sans-serif;">.</span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;">You can <b>enter the Grand Prize giveaway</b>, including an "I love someone with Down syndrome" tote, an advocate coffee mug, a variety of books including </span><u style="font-family: arial, helvetica, sans-serif;">The Parent's Guide to Down Syndrome</u><span style="font-family: "arial" , "helvetica" , sans-serif;">, a t-shirt, stickers and more (over $150 value) enter here: </span><a class="rcptr" data-raflid="d9abf6bc4" data-template="" data-theme="classic" href="http://www.rafflecopter.com/rafl/display/d9abf6bc4/" id="rcwidget_ouroqihv" rel="nofollow" style="font-family: arial, helvetica, sans-serif;">a Rafflecopter giveaway</a><span style="font-family: "arial" , "helvetica" , sans-serif;"> </span></li>
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com13tag:blogger.com,1999:blog-1835871859715977979.post-87895268798785920062016-01-12T19:47:00.001-08:002016-01-12T19:47:54.888-08:00Happy Birthday, Cora!I'm sitting here, kids asleep, a slight buzzing of excitement coursing through my stomach and chest every few seconds. Tomorrow is Cora's fifth birthday. Five.Years. Old. How did this happen? How did my tiny baby turn into this lovely little girl? It's happened before my eyes, all the moments stretching into all the long days, the seasons and years soaring by. <br />
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This little hilarious, silly, loving, exasperating, strong-willed and amazing little girl...<br />
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Sometimes my heart feels like it can't contain my love. This girl went and made me a mother and turned everything I'd ever known upside down in the most perfect way. <br />
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She lives with joy and shares it with contagious abandon. She loves deep and hard and I am so blessed that she shares that love with me.<br />
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Happy, happy birthday, my sweet girl. I couldn't be more proud of you.<br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com45tag:blogger.com,1999:blog-1835871859715977979.post-12450014499350861572015-10-31T21:30:00.000-07:002015-10-31T21:30:52.508-07:00Day 31- HalloweenTonight I took my sweet little birdie family out in the pouring rain.<br />
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It was a blast. Cora has been talking about Halloween since last year's trick-or-treating adventure. She's been asking about it for weeks now, and has been practicing saying "trick-or treat." She said it perfectly to all the neighbors whose houses we visited, along with a polite "thank you." Ruby was a trooper, trudging in the rain, with her little feathers plastered against her head and her tutu tail drooping down. She said "bye" to a few times, grabbed candy with the best of them, and tucked it away in her little purse. Oh so sweet.<br />
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I managed to snap a few photos of my flapping little birds before we headed out into the pouring Portland rain. I love these costumes. They were so much fun to make.<br />
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The bird family.<br />
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And the out-take. Can't stop laughing at this one.<br />
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Happy Halloween.Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-10690647583354581122015-10-30T21:19:00.000-07:002015-10-31T21:05:32.576-07:00Day 30- How it Flies<i><b>As Down Syndrome Awareness Month (or as some of us like to call it, Down Syndrome Acceptance Month) is wrapping up, I realize that I haven't said very much of what I'd hoped to say. There just hasn't been the time, or sufficient sleep to string thoughtful words together in the small windows when my girls are sleeping and I am not. It has felt overwhelming to post something every day, and so much of what I've posted has been light. I've been trying to put together a way to sum up what I really want to say. But my ability to provide enlightening or profound insight feels flat, and so instead, I want to re-share something I wrote in February of this year, shortly after Cora's fourth birthday. It pretty much sums up our life as it is... busy, messy, exhausting, sometimes overwhelming, and still beautiful.</b></i><br />
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The other night I had the rare experience of lying down with Cora at bedtime. Usually I am in charge of the wee-one, who still wants only her mama at night, and has a pair of lungs that can easily keep her older sister from drifting off to dreamland.<br />
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I held her little self close, and smoothed her hair, whispering to her made-up-on-the-spot stories about Cora and Ruby and listened to her giggles. After the days of listening to her argue and yell, always wanting to do things in her own little way, which seldom really jives with the way it works best for me... well, that little snuggle session felt pretty sweet.<br />
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And I couldn't help but thinking, "Oh my word, this girl is four, she is FOUR, she is four." How could four years have already passed mothering this little turkey? I had to make myself remember her tiny little baby self, tucked up in the NICU, hooked up to her apnea monitor, getting milk through her NG tube, and even getting handed to a kind nurse decked out in scrubs for her little body to be opened up and her heart be made whole.<br />
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All this time has passed between those moments. My baby has become my little girl. My silly, creative, curious, lovely, and sometimes infuriating little girl. It's a trip, this parenting thing.<br />
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It changes oh so fast. The moments when you feel stuck and overwhelmed, the moments when you feel blissfully at peace, all of them keep flying by.<br />
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These days life feels pretty different than I may have thought it would four years ago. Our days are filled with song and dance, imaginative play, art projects that barely seem worth it they're over so fast, endless cleaning and constant errands. They're filled with the most incredible little preschool and a very funny baby sister.<br />
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They're filled with a strong-willed little girl who likes to show us who's really the boss.<br />
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They're filled with play-dates with new friends, and watching my shy little girl keep mostly to herself and then talk and laugh about how much fun she had after her friend goes home. They're full of conversations with other parents that aren't always about Down syndrome, and these days often with parents whose own children don't have disabilities.<br />
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They're full of way too little sleep for me, a to-do list that never ends, and a feeling of always being stretched too thin and needed too much. They're full of never-ending runny noses from school, and long rainy days. They're full of missing my own friends and always telling myself how I need to prioritize my self and my adult relationships, too. <br />
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And they're full of laughter and games of peekaboo (or "kaboo!" as Cora likes to say), and hiding under the blankets in the guest room. Skype dates with family, and long walks in the stroller.<br />
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They're full of life. It's not really what I had pictured it to be. It's pretty ordinary, largely exhausting, and overall a beautiful blessing.<br />
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My life with my awesome big four year old girl, and her sweet little sister.Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com2tag:blogger.com,1999:blog-1835871859715977979.post-39367134035031259442015-10-29T11:58:00.001-07:002015-10-29T11:58:57.540-07:00Day 29- Camera Shy <span style="font-family: Verdana,sans-serif;">This cheeky little girl went to school dressed as a ladybug today.</span><br />
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<span style="font-family: Verdana,sans-serif;">She wasn't too interested in showing her costume to the camera, but was more than willing to check herself out in the mirror.<span style="font-family: serif;"> </span></span><br />
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<span style="font-family: Verdana,sans-serif;">You can see the first time this costume made its debut (albeit with a few items in a smaller size) here. My ode today to Throwback Thursday.</span><br />
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<span style="font-family: Verdana,sans-serif;">9 month old Cora.</span><br />
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<span style="font-family: Verdana,sans-serif;">And last year on Little Miss Ruby, at almost 4 months old.</span><br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-4528514404642407842015-10-28T19:54:00.003-07:002015-10-28T20:05:14.323-07:00Day 28- Because...Monday as I picked up Cora from preschool, I heard her teacher begin the song to excuse her from class for the day, "Cora was here today, Cora was here today, I'm so happy that Cora was here today." Cora ran up and gave a high-five to her teacher, lingering next to her as the next child was sung out of class. The little boy gave a high-five to their teacher, then paused for a second and gave Cora a big hug.<br />
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His mom was standing next to me. She smiled and asked if it was Cora's birthday. Usually on the kids' birthday celebration days at school, the honored child gets to choose to give high-fives or hugs to the others as they leave class that day. I told her that it wasn't Cora's birthday, then we said our goodbyes.<br />
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Today during pick-up, Cora's classmate's mom approached me and told me that she asked her son why he gave Cora a hug at the end of the day. She told me he looked at her matter-of-factly and said, <span style="font-size: large;">"Because I love her."</span><br />
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Seriously. So sweet. Little moments like these definitely show me that this is the right place for my girl. There may be missteps every once in a while, but Cora is definitely building a community for herself. And that makes me happy, indeed.<br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-56054096039880321612015-10-27T21:27:00.003-07:002015-10-27T21:27:51.144-07:00Day 27- Presume Competence<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-17678059054548036802015-10-26T20:42:00.001-07:002015-10-26T20:42:36.627-07:00Day 26- Sweetness<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-86573409383013269332015-10-25T20:46:00.002-07:002015-10-25T20:47:28.356-07:00Day 25- The Very Best Thing<span style="font-family: Verdana,sans-serif;">Do you remember those moments with your best friends, when you couldn't even look at one another without dissolving into laughter?</span><br />
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<span style="font-family: Verdana,sans-serif;">I miss those days. But I've got a pretty good proxy. </span><br />
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<span style="font-family: Verdana,sans-serif;"><span style="font-size: small;">These girls manage to have full conversations that consist of nothing
but giggles. It tickles me deep in my soul. This relationship has no
need for long conversation at this point. They can entertain one another
for hours with a few words, a few baskets of toys, some music over the
speakers, and giggles for days.</span></span><br />
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<span style="font-family: Verdana,sans-serif;">Man, it gets me. It really is the very best thing.</span>Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-41813563660247906352015-10-24T20:48:00.001-07:002015-10-24T20:48:24.046-07:00Day 24- An Impulse to SoarTonight I'm re-posting one from last October. One of my favorites. I am absolutely witness to this girl's impulse to soar.<br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-74515280524776479352015-10-23T13:33:00.001-07:002015-10-23T13:49:41.567-07:00Day 23- Kindergarten and Inclusion<span class="_5yl5" data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0"><span data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0.0"><span data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0.0.$end/=1$text0/=010"><i><b>"Awareness is the first step. Acceptance is the next. Practicing active inclusion, as an organic, messy, trial and error, imperfect journey is the work. When it's done with full knowledge that it will be a forever process and require vigilant practice, a type of omnipresent commitment to valuing and inviting the full personhood of each participant, we have arrived somewhere. When that is realized, we have not only achieved something, we have become better by doing so."</b></i> </span></span></span><br />
<span class="_5yl5" data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0"><span data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0.0"><span data-reactid=".1x.1:$mid=11444624928687=2df88a702af89229619.2:0.0.0.0.0.0.$end/=1$text0/=010"><i><b>- Heather Kamia</b></i></span></span></span><br />
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These are words that a friend of mine recently shared. And they are resonating with me so much right now.<br />
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We are currently in the process of gearing up for Cora to begin kindergarten next fall. This time that I've been both fearing and looking forward to since Cora's birth is actually going to be here very soon.<br />
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I am very lucky to live in a place with vast and incredible resources for families like ours who are embarking on this process with the goal of ensuring our children an inclusive education. From Cora's very early days, I began attending meetings and trainings about special education process in our educational system. Before I even knew what any of the acronyms meant, (IEP, IFSP, IDEA, FAPE, LRE, UDL, ECSE) I held my small nursing baby in my arms, as I listened to parents and lawyers speak in what sounded like a foreign language and discuss resources that seemed so complicated and so alien. <br />
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Our local organization, The Northwest Down Syndrome Association, holds a 9 month-long training seminar for families whose children with intellectual disabilities are entering kindergarten the following fall.<a href="http://www.nwdsa.org/what_we_do/education/kindergarten_inclusion_cohort.html" target="_blank"></a>. I have been waiting for our turn to participate in <a href="http://www.nwdsa.org/what_we_do/education/kindergarten_inclusion_cohort.html" target="_blank">the Kindergarten Inclusion Cohort</a> for the last four years and now I am finally here. I can't tell you how excited I am to take in the information that has been thoughtfully and meticulously prepared over the last six years. Or how inspiring it feels to sit in a room with other parents who have similar goals for their children as we hear the advice and words of families who have done all this before us.<br />
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I know how important it is for me to be educated in Cora's rights. How important it is for me to represent Cora in the meetings we will soon have to discuss and decide her educational future. How crucial it is for me to be her advocate and make sure that she will have the opportunities to learn and grow as part of her community along with her peers of all abilities. I know that her placement, her documented goals and legally-mandated supports are going to be critical in setting the tone for the start of her school years and in turn, the rest of her life.<br />
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And I also know that it is just the beginning. We've been practicing for years now just by being her parents. We've been practicing by being a part of our community. We've been practicing in our wonderful preschool and with her doctors and therapists. And now it's time to pull together what we've learned as we broach this next step. A step that will continue to consist of lots of practice. I know that her IEP won't be able to write her experiences, and that many of her strengths and challenges are still unknown. And I know that in this next phase there will be many rewards and many more struggles, just as there are right now. <br />
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I am trying to gear up for it as best as I can, knowing that it will be an ongoing process that will never end, as long as I am her parent and her advocate. And that I intend to be.<br />
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For more information about the goals of the Kindergarten Inclusion Cohort, and to see a wonderful documentary on the importance of inclusion, take the time to watch this video by the <a href="http://www.nwdsa.org/welcome.html" target="_blank">Northwest Down Syndrome Association</a>. <br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-56337123602019334102015-10-22T21:34:00.001-07:002015-10-22T21:34:17.908-07:00Day 22- Raise Your Words<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-50021889948909552152015-10-21T21:13:00.000-07:002015-10-21T21:13:05.128-07:00Day 21- ProgressRecently I've gotten comments about Cora that I wouldn't have expected in the past. Several of the other adults at preschool have been impressed by <b>what a good eater she is.</b><br />
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And as surprising as it feels, it's true. These days she is a great little eater. Oh, she will often tell me, "I don't like it," as she pushes away a dish of food. My response is always the same. "You don't have to eat it," and then I change the subject. More often than not, by the end of the meal she'll have eaten some of everything on the table. That technique has really paid off with her. She's also done really well with having family-style meals, where she gets to serve herself from a few different foods on the table. We started doing this to model snack time at her preschool. When she began school last year I was floored by how independent the students were expected to become. Each day the kids set their own place at the table, serve themselves, pour their own water, and then wash their own dishes and put them away. I could barely imagine Cora doing those things at the beginning. Yet she does, sometimes with reminders to stay on task. And following this model at home has been really successful for her.<br />
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Her transformation has been about more than reducing picky eating and encouraging more independence. It's also been seeing her physical abilities improve dramatically. For the longest time, Cora simply didn't have the strength and tone to eat food that wasn't soft or easily dissolved. She wasn't able to break down fresh fruits, vegetables, or meats. Until well past her third birthday her meals consisted mostly of thawed cubes of various soups and stews, along with soft things like pasta, yogurt and eggs. She seldom ate the same meals that we did. Adding to that was her severe issue with <a href="http://fpiesfoundation.org/" target="_blank">FPIES</a>, which has since has cleared up. Now she is able to have formerly forbidden foods like soy, beans, peas and peanuts. We no longer have to pack food for her wherever we go. I can't even remember the last time I made her a separate meal. The options feel endless. <br />
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Of course it's not a perfect system. She still acts like the 4-year-old she is, requesting cheeseburgers, spaghetti, pizza and ice cream several times a day. Sometimes she asks for certain food, only to balk when it's on her plate. But in general her willingness to eat a variety of foods, and her <i>ability</i> to do so is night-and-day compared to where she came from.<br />
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Overall the process has been really exciting to see. Sometimes, especially when your child has developmental delays, progress seems to happen so slowly that it is hard to believe the next stage will ever come. You choose whether to wait it out with patience or whether to intervene with various therapies. Sometimes it's a hard call to make. In general, our family has tended toward a model that is not extremely therapy-heavy. We have learned that for us, time spent as a family without constantly running to the next appointment is more valuable than always feeling the urgency to intervene. We value the advice and perspective from the experts and do partake in a regular schedule of limited therapy, but much of the time we trust in her ability to get there with our guidance and support. <br />
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It's an ongoing process, and one that involves asking many questions, trying various approaches, and often doubting decisions. But even though sometimes it feels like a lot of effort, it is awfully rewarding. There sure is something thrilling about watching Cora move forward. She is absolutely capable of so much. I remind myself often to keep my expectations high. And at the same time I try to keep in mind that her abilities and accomplishments, as proud as I am to witness them, are not the real indicator of her value. That ultimately, regardless of what she is or isn't able to do, or when or how she does things, she is enough.<br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-20010827469309883212015-10-20T22:30:00.000-07:002015-10-20T22:30:04.403-07:00Day 20- Pumpkin Patch<br />
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-43302506442934685032015-10-19T20:59:00.003-07:002015-10-19T20:59:53.697-07:00Day 19- Dance<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-81260432287130239162015-10-18T19:05:00.002-07:002015-10-18T19:05:28.295-07:00Day 18- Aim High<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-53412852934599982792015-10-17T14:02:00.000-07:002015-10-17T14:02:12.515-07:00Day 17- Apples!Today, for our third year, we went to the apple festival at our local nursery.<br />
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The kids get to run giggling through the aisles and dance to live music. They get to paint pumpkins, and then play with hula hoops after making silly faces through carnival cutouts. <br />
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<br />
For
the first time today we actually waited in the line to taste about 50
varieties of apple. So worth waiting in the line, even with two small
kids yelling "apple!" (or in Ruby's case, "uppuh!") We bought quite a
few pounds of apples, in all different varieties. I'm looking forward
to tossing a few of the sweet little organic baking apples into a crisp
this afternoon. <br />
<br />
It's always a lovely way to spend a couple of hours on a beautiful fall day. Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-78294065018434932002015-10-16T20:06:00.002-07:002015-10-16T20:06:43.640-07:00Day 16- Flowers<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0tag:blogger.com,1999:blog-1835871859715977979.post-29679047872155292302015-10-15T20:39:00.001-07:002015-10-16T20:11:51.460-07:00Day 15- For Both Our Sakes<b><i>Tonight I'm re-sharing a post from about two years ago. It's a good reminder as I go through yet another day feeling like there's never enough time for me.</i></b><br />
<br />
I've been feeling a bit uninspired here. We've been trying to soak
up the last weeks of summer by getting to the park every day before the
rains return. Together we've been going through the motions of the days
and weeks in between visits from family and friends and trips out of
town. Somehow I've been neglecting the camera, neglecting my writing,
neglecting myself, even.<br />
<br />
Sometimes being a mother makes
me feel so disconnected from myself. Spending days wrangling my
reluctant child in and out of clothes and diapers, attempting to feed
her through yet another hunger strike when nothing finds its way into
her mouth and everything is thrown on the floor, going to and from
outings, errands and activities, most of them involving cajoling, if not
full on mommy-toddler wrestling matches. It's exhausting, as any
mother knows. There are no lunch breaks as I squeeze work into the
minutes that she actually naps. I breathe sighs of relief when she is
finally down for the night, even as I know that we'll likely have to put
her back down a couple times before we turn in ourselves, and then
inevitably a couple more times before the 5:00 am wake up call. The
day-in and day-out can kick your butt and kick it good. And it
definitely leaves me feeling a disconnect from the self I'd always
known, the me that has always needed down time, quiet time, alone time.
But alas, there don't seem to be any real vacations for mothers.<br />
<br />
Yet
in the midst of feeling depleted and unmotivated, I had a wonderful
moment of connection this weekend. A moment where the mama-me and the
missing-in-action me seemed to coalesce and I felt so whole.<br />
<br />
We
were up on the Olympic Peninsula at a beautiful garden wedding. It was
past Cora's bedtime and she was worn out from the day. Instead of
packing her up and heading off to bed as we always do, we kept her out a
bit longer. I wrapped her in the carrier as the dancing began. With
Cora snuggled against my chest, I took off my shoes and danced in the
grass. I barely felt the extra weight as I moved, clutching Cora's head
against my chest and moving us both through the night air. We danced
together until the party began to slow, when my quiet girl began her own
little shimmy to mirror what I too was feeling. Neither of us were
ready for our dance to come to an end.<br />
<br />
And during those
moments I felt like myself again in a way that seems so to evade me in my life as a mother. There are usually no pauses. There is always a small hand in mine, a small life in my care, a small person's large will to negotiate. Yet for those minutes both parts of myself danced together as one. I was struck by such a pure knowing... a
peace... where I didn't feel pushed and pulled by the needs of my child,
but felt that rare feeling when her needs and my needs perfectly
converged, pulling the pieces of me back together.<br />
<br />
Later,
as I tucked Cora into the hotel bed, my heart ached with love for the
little girl that has stolen my heart and re-written my life. I wished
that I could hold onto that feeling as I navigate the moments that seem
to make up my life and that feel like such hard work. I want so to not
lose touch with myself as I devote my life to my child. I want to be
able to find these moments when I need them, to find them in myself and
share them with my girl. I want for her to see me as a whole person,
not so much a harried mother going through the motions. As important as
maintaining that connection is for me, it's just as important for her.<br />
<br />
And
so with that reminder and the memory of our sweet dance beneath the
stars, I will hopefully start these days a little bit fresher. Maybe
with a little more patience, and a little more forgiveness. And I hope
to be able to hold onto it as we move through our days, for both our
sakes.<br />
<br />
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Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com1tag:blogger.com,1999:blog-1835871859715977979.post-47564426656740597532015-10-14T20:33:00.000-07:002015-10-14T20:34:13.344-07:00Day 14- Lighting the World<div class="separator" style="clear: both; text-align: center;">
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<br />Leahhttp://www.blogger.com/profile/08985688905432556253noreply@blogger.com0