tag:blogger.com,1999:blog-52055233958696539522024-03-13T22:39:29.715-07:00Thriving in "Holland"kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.comBlogger84125tag:blogger.com,1999:blog-5205523395869653952.post-483475038931255682023-06-27T21:36:00.005-07:002023-06-29T16:12:52.117-07:00Sanguine in Seattle<p><span style="font-family: verdana;"></span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoiKwBAhvOLEstFJXPv7iGY8aI3KxGrNwrJd4tVGRNqqtvbw6q_Mbt3l0WKhEBdg0TubLqKiRzFklGnWabYriUVEecLRYJ16C7hFhqUCjln91L4gvXp8SGEnOCPsUp6SX5HQnnsyOv8-SAGGJx4YFmhci4UYgu7pTYkZkawU0tUC7o3KiwzU602EAjWyk/s4032/IMG_7618_Facetune_26-06-2023-14-48-48.tiff" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoiKwBAhvOLEstFJXPv7iGY8aI3KxGrNwrJd4tVGRNqqtvbw6q_Mbt3l0WKhEBdg0TubLqKiRzFklGnWabYriUVEecLRYJ16C7hFhqUCjln91L4gvXp8SGEnOCPsUp6SX5HQnnsyOv8-SAGGJx4YFmhci4UYgu7pTYkZkawU0tUC7o3KiwzU602EAjWyk/w480-h640/IMG_7618_Facetune_26-06-2023-14-48-48.tiff" width="480" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><span><br /><span style="font-family: verdana;">When your child is first diagnosed with a rare genetic syndrome, you feel overwhelmed with the steep learning curve and with the imperative to learn quickly so that you can take care of all of your child’s many needs. In the case of Smith-Lemli-Opitz syndrome, most physicians have never seen another child with the syndrome and know nothing about it. As a result, as a new parent, you can’t ask your pediatrician for guidance, even in the most vital areas, like feeding your newborn or tracking his growth. </span></span><p></p><p><span style="font-family: verdana;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsbCrMLjdn0ojkDITrHaoSvB5CnWLwm1aqERLQLssQmTZ3sc1qaWBk07XR_AYjtC1SOUDuU9DiT3IUwOY90JGO5ZDf_wTMVpn0zLwUZozIgTnkURvXeKmOo-Jn8jM3UmO5sJ5pfQoCecShzWy8hgYf2r5OoXQg38LJLrE0dE_SFw-ev4rVCPMuaiDxOj8/s1196/IMG_7409_Facetune_26-06-2023-15-38-12.tiff" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1196" data-original-width="672" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsbCrMLjdn0ojkDITrHaoSvB5CnWLwm1aqERLQLssQmTZ3sc1qaWBk07XR_AYjtC1SOUDuU9DiT3IUwOY90JGO5ZDf_wTMVpn0zLwUZozIgTnkURvXeKmOo-Jn8jM3UmO5sJ5pfQoCecShzWy8hgYf2r5OoXQg38LJLrE0dE_SFw-ev4rVCPMuaiDxOj8/w360-h640/IMG_7409_Facetune_26-06-2023-15-38-12.tiff" width="360" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">When your baby spends her early weeks in the NICU, you’re filled with fear as she fails to thrive. You read that 80% of babies with SLO die early on. Sometimes your baby’s physician tells you that your baby likely won’t make it to her first birthday. </span></p><p><span style="font-family: verdana;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGrRcdepu2mbolnyh9lw-EAoedzc7pL5dI6yWI8O3bd2pt-w4QrgO8OBewGyo-j331JF3NPKGo5p29BzO823yZnfxEzk81BZ-pno_k9OiCzLLNckTmmKn7D68HA1XwL11AeoyS5HXMU1rVhAaYECDXwfbMbdqVUN4s31yiDAGBKFz_oK29V96hVK8F2VA/s3640/IMG_7461.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2730" data-original-width="3640" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGrRcdepu2mbolnyh9lw-EAoedzc7pL5dI6yWI8O3bd2pt-w4QrgO8OBewGyo-j331JF3NPKGo5p29BzO823yZnfxEzk81BZ-pno_k9OiCzLLNckTmmKn7D68HA1XwL11AeoyS5HXMU1rVhAaYECDXwfbMbdqVUN4s31yiDAGBKFz_oK29V96hVK8F2VA/w640-h480/IMG_7461.jpeg" width="640" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">The isolation of your unexpected parenting journey sets in, along with increasing panic. You start to wonder if anyone in the world understands your life or could possibly offer comfort or relevant advice. </span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhobPSdfRphwmOVsA_iythBGM--WOQFrPyDmQa-vL5KuMplz7ij8p6Tb-I1c2LP03eloVdLULE4N1eMETq6gcpoT6Zsw4v0mI9evt2sNNdjxjStLF5Ng4218PWZ8BMzGbpjPtQgqcDwMrZzb7ZjgCL9nFkHEjD25t6zHRl-YmkaJtNz1V2QlMA_MWG5CRE/s3784/IMG_8024.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2708" data-original-width="3784" height="458" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhobPSdfRphwmOVsA_iythBGM--WOQFrPyDmQa-vL5KuMplz7ij8p6Tb-I1c2LP03eloVdLULE4N1eMETq6gcpoT6Zsw4v0mI9evt2sNNdjxjStLF5Ng4218PWZ8BMzGbpjPtQgqcDwMrZzb7ZjgCL9nFkHEjD25t6zHRl-YmkaJtNz1V2QlMA_MWG5CRE/w640-h458/IMG_8024.jpeg" width="640" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">If you’re lucky, you find the <a href="https://www.smithlemliopitz.org/" target="_blank">Smith-Lemli-Opitz Foundation</a>. And then the cavalry of fellow parents arrives. The truth is, no one except another SLO parent “gets” it. We bring you in like a long-lost cousin, flooding you with photos of our children, welcoming you from all over the world, sharing experiences, and telling you what you need to know. You notice that our kids look like one another, and you fall in love with every new face, a love that supplants your earlier feelings of panic. Our shared experience bonds us for life like a second family.</span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9k4TMhSEt3b5u-k7cbnwZD4-pWKK8tED-F0FwjFYikqGMWqM72tO0qqBKaktNPbHdzr10ZDFY3z32s5BvFw-G7cQa6dgz43V630S22QqKY4yHHk6G7FkY9s14xBX_YN4wht_d2uXY9ez4moUk49JkQ7JbGjXdXB4dN9FO1Z4WXOVtPlWTqurgh_Spyl8/s3598/IMG_7779.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2698" data-original-width="3598" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9k4TMhSEt3b5u-k7cbnwZD4-pWKK8tED-F0FwjFYikqGMWqM72tO0qqBKaktNPbHdzr10ZDFY3z32s5BvFw-G7cQa6dgz43V630S22QqKY4yHHk6G7FkY9s14xBX_YN4wht_d2uXY9ez4moUk49JkQ7JbGjXdXB4dN9FO1Z4WXOVtPlWTqurgh_Spyl8/w640-h480/IMG_7779.jpeg" width="640" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">Working for the Smith-Lemli-Opitz Foundation for the last 11 years has given my life purpose and meaning. It’s been exciting to help grow the Foundation into an international organization. We just wrapped our Family and Scientific Conferences in Seattle, our best conferences yet! Lucky for us, I know a fantastic MC and quizmaster, so I put that guy to work for us. 😍🧔🏻♂️ We took time to connect with one another, laugh about stories about our unusual families, and learned from all of the experts on Smith-Lemli-Opitz syndrome the Foundation brought together, and live-streamed to families all over the world. </span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ISOU7yH0evQIVIeIJDUK0IdmKCqOHbxPUuaq00Fm4-Kr_tKDd7evjw9Z09rw15PvYmhYWbRP4EFhHXbwHy5s0k34hw483pVNN7Tm8tcjfbLmRgmU6B1XtXo7w4W9DiMrwdg9V3jxpPYqvDs_4wsgxumdMTfTEdg-e9415Bj00eEjp4s7CePc-9Iy_3k/s1176/86E46C18-C5A7-4340-891E-AFE603400CB5.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="977" data-original-width="1176" height="533" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ISOU7yH0evQIVIeIJDUK0IdmKCqOHbxPUuaq00Fm4-Kr_tKDd7evjw9Z09rw15PvYmhYWbRP4EFhHXbwHy5s0k34hw483pVNN7Tm8tcjfbLmRgmU6B1XtXo7w4W9DiMrwdg9V3jxpPYqvDs_4wsgxumdMTfTEdg-e9415Bj00eEjp4s7CePc-9Iy_3k/w640-h533/86E46C18-C5A7-4340-891E-AFE603400CB5.jpeg" width="640" /></a></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><br /></span></div><p></p><p><span style="font-family: verdana;">If you don’t have a kid with a rare disability, you might find it difficult to appreciate the bond that ties us to one another. The connection I share with the many lovely SLO families that I have met is one of the greatest gifts in my life. From this past week, I will remember the emotional four-way group hug with my fellow board members, the conversations with new families whom I already love, and all of the laughter that we shared together. Despite (or perhaps because of) the challenges we share, I’m still smiling over all of it. I have refilled my bank of connection, support, and love, and I’m already looking forward to our next conference in 2025!</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZUWMoLIZklOeumTOWoVfdgD3RM33V-5kNZns2qnI0_YHpi9xO2hifMFfcVeMr4ycOGJKlfedx7dd9f2rCoo6bbCvt2tgkmvuJ0rQQkL8e-5FsrtmqDypnRDle48OvujJZHnvjn1BaxtoFD-nq1I7aGxb1s3AFBf_P_dsaoycCjTXs2sD_wDUl_l9jgI/s1620/DSC_0572.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1620" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyZUWMoLIZklOeumTOWoVfdgD3RM33V-5kNZns2qnI0_YHpi9xO2hifMFfcVeMr4ycOGJKlfedx7dd9f2rCoo6bbCvt2tgkmvuJ0rQQkL8e-5FsrtmqDypnRDle48OvujJZHnvjn1BaxtoFD-nq1I7aGxb1s3AFBf_P_dsaoycCjTXs2sD_wDUl_l9jgI/w640-h426/DSC_0572.jpeg" width="640" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;"><br /></span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-64333537760251231672023-06-10T08:13:00.001-07:002023-06-10T08:13:58.659-07:00Graduation Day<p> </p><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLbsdUxw4CfjCapBTd3grpM-wQynX39zIZvd4BpUrLXOlIPVIBW24omkkLjRx70VK3cJA6yW-Kcy99i7knWpo0js1affuJtnWq5bMRHcdJAxnd7beWamiR8nUGtSfVvAz4R6RmvQaNOUrT4elrF5CQ7f6ylMOVVZRKT5b0y09oPM3yH_x_bcUjXtpu/s3605/IMG_7117.jpeg" imageanchor="1"><img border="0" data-original-height="3605" data-original-width="2403" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLbsdUxw4CfjCapBTd3grpM-wQynX39zIZvd4BpUrLXOlIPVIBW24omkkLjRx70VK3cJA6yW-Kcy99i7knWpo0js1affuJtnWq5bMRHcdJAxnd7beWamiR8nUGtSfVvAz4R6RmvQaNOUrT4elrF5CQ7f6ylMOVVZRKT5b0y09oPM3yH_x_bcUjXtpu/w426-h640/IMG_7117.jpeg" width="426" /></a></div><p></p><p><span style="font-family: verdana;">Today we’re filled with pride as we celebrate Jukie’s graduation! 👨🏻🦰🎓 As we’re still processing all our complex emotions about this time of transition, I’ll let Jukie’s wonderful teacher of the last 11 years speak about this momentous occasion. Here is an excerpt from the commencement address given to and for Jukie by his devoted teacher:</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">“Over the years, half of Jukie‘s life… I have watched Jukie grow, learn, and define himself. Throughout everything in this journey, Jukie has steadfastly remained Jukie. We have learned to work together, but everything is in negotiation. I love the way he advocates for himself and for what he wants. He is willing to discuss with you what you want, but do not take it as a given.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Often in this job, you learn as much as you teach. Jukie is the professor of patience, the maestro of minutiae, the department chair of feng shui. Without him, how would we know which way to cross our legs? How to wear our shirt sleeves fashionably? And why you might want to consider a shorter haircut?</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">But Jukie goes much deeper than that. Jukie is a very accurate reflection of your moods, your joy and your sadness. He is sensitive and caring. He is loving and honest. You will always know where you stand with Jukie.</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Jukie is also incredibly smart. That does not mean he necessarily wants to learn what you are offering to teach, but that when he wants to know how to do something, he will figure it out. Jukie has forced me to become a better teacher, to think in new and creative ways, to become more sensitive myself, and to broaden my view of the world around me — and to know the precise positioning of my fingers to give the ultimate head squeeze.</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Jukie, I am going to miss your sly smiles, your oh so Juk-ish sign language, and your laughs. Oh the laughs. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">And you, Andy, Kate, Geneva, and Truman, I thank all of you, for all of the trust you have put in us with your beloved Jukie. Your family’s love and support for him has never wavered and never will. Jukie is in great hands and I wish all of you the best. I hope the sequel to ‘Where’s Jukie?’ is titled something more like: ‘Jukie’s just Chilling.’</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">And now, let’s enjoy one last obsequious bow from Jukie!”</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-87660640272071041292023-04-01T18:31:00.001-07:002023-04-01T18:31:24.403-07:00Fluency in Love<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIMKKw6shlHGqksgrF4g1T4UeH7hcPU-zOPQ9HjP2A8gvPpfkFNbktBUr84uN0m1_JnLz-MjkO-pZdtlfMU2zw_6VeAujolUaVEBbdbHNv9pXU19H7_veD9hUH8d7NSxLDUrLgsEelAJmkc9eBK722cVy1eDhcKCo2FSdtDn5PL8b8SZyMqQsx6zuF/s3605/82D86168-FB1C-44C9-9918-4DC6878A87C8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3605" data-original-width="2403" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIMKKw6shlHGqksgrF4g1T4UeH7hcPU-zOPQ9HjP2A8gvPpfkFNbktBUr84uN0m1_JnLz-MjkO-pZdtlfMU2zw_6VeAujolUaVEBbdbHNv9pXU19H7_veD9hUH8d7NSxLDUrLgsEelAJmkc9eBK722cVy1eDhcKCo2FSdtDn5PL8b8SZyMqQsx6zuF/w426-h640/82D86168-FB1C-44C9-9918-4DC6878A87C8.jpeg" width="426" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">More than once over the last week in my hometown of Chicago, I was asked how long I’ve lived in California. Thirty one years ago, when I was younger than Geneva is now, I decided long-distance love was not enough for me. I wanted to start a life with my poet out west. This was the best decision I’ve ever made. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Leaving my family and friends behind was hard, especially leaving my mom. In a selfless act of mama love, she encouraged me to follow my heart. “I see the way your eyes light up when you talk about Andy,” she had said. With that conversation, she gave me her blessing and even a gentle nudge to make the big move.</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Mom came to visit us every chance she got. We took her on hikes, taught her to rollerblade, and introduced her to California wines. She enjoyed accompanying me to my favorite places, and she befriended my friends. And whenever I needed her, she flew to my side. Mom came for the births of our three kids. Vigorously rubbing my back all night long when I had back labor with Geneva, she helped me through the hours with a continuous stream of encouraging words. Three years later, Jukie came so fast that only Mom and Andy attended his birth. I didn’t panic because my mom was by my side. Her youthful energy and constancy were blessings to me. All those years ago, I never imagined my parents growing elderly. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">With time, Mom’s visits slowed down, and when Covid hit, they ended. As she was no longer able to come to me, now I go to her. With reversed roles, my mom now welcomes my visits and accepts my help.</span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">No one tells you how difficult it is to watch your parents age. Watching this process from the other side of the country feels particularly heartbreaking. Maintaining our connection now that phone conversations have become so challenging feels nearly impossible. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">And so leading up to this trip, I was filled with uncertainty about how my Mom and I would connect. I discovered that love is the focus of every interaction now. I’m grateful to see her look of recognition and to hear her use the nickname she gave me when I was little, the one only she uses. I enjoy our ping pong games (her new favorite pastime) and delight in her beating me. I’m so happy to see her smile and hear her laughter, even when I don’t know exactly why we’re laughing. Joy is the point. When words start to disappear, love remains. Hugs are a language we all speak fluently.</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-26929139461766158032023-02-28T08:59:00.001-08:002023-02-28T08:59:31.058-08:00Together we are Strong<p> </p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzOZ-Vt-NCq8KGatgKB_oYskQlq3IfJEWIJEzhd3Nzi0jVkwZ128QGZ7t4ZZoKEEV4EnwbchL5kWRag4icSKA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">“Being healthy is the crown that only the sick can see.” <span class="Apple-converted-space"> </span>Hasan Minhaj </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Health and access to health care are fundamental human rights. As a reminder not to take good health for granted, today we celebrate Rare Disease Day, an event that takes place every February 28th (or in leap years, February 29th, the rarest day of the year).</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Rare Disease Day is so much more than a one-day event. It’s a rallying cry for a global movement of people around the world working toward health equity and access to diagnoses and treatments for people living with rare diseases. A disease is considered rare in the U.S which affects fewer than 200,000 people. The example I know best is Smith-Lemli-Opitz syndrome, the disorder my son Jukie was born with. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Since its beginning 15 years ago, Rare Disease Day has helped to build a diverse International community of people with many differences in diagnoses and experiences, but united in purpose. Through sharing the experiences of people living with a rare disease, together we hope to change and improve the lives of 300 million people affected worldwide, as well as the lives of their families, caregivers, and supporters.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">A day like today can help people like Jukie feel less disconnected from their local and national communities. Alone we are rare. Together we are strong. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">To learn more about Smith-Lemli-Opitz syndrome, visit <a href="https://www.smithlemliopitz.org/living-with-slos/ " target="_blank">Smith-Lemli-Opitz Foundation </a></span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-8617678148824795882023-01-04T21:17:00.001-08:002023-01-04T21:17:56.817-08:00Jukie Joy<p> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQc_JN0hslqfpeinJkXKulQML20PNKP-5B3PVgfHWWNM0l5Mw3w1cNvs5YnwetPQPtAwPX78sc5QYjAThX9ut1CITeEQMAH77FypBwhKO9tevIYtdT54krltYlIKhXeFYbrX987u5h1Aw3bmXKtCE2yedQjBiWWI_aqFXs7gGl3d3X0xEBfQrWWKyq/s3352/F986B1AE-6EB2-4FE8-817A-64AB7FE00154.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="3352" data-original-width="2514" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQc_JN0hslqfpeinJkXKulQML20PNKP-5B3PVgfHWWNM0l5Mw3w1cNvs5YnwetPQPtAwPX78sc5QYjAThX9ut1CITeEQMAH77FypBwhKO9tevIYtdT54krltYlIKhXeFYbrX987u5h1Aw3bmXKtCE2yedQjBiWWI_aqFXs7gGl3d3X0xEBfQrWWKyq/w300-h400/F986B1AE-6EB2-4FE8-817A-64AB7FE00154.jpeg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><div style="text-align: left;"><br /></div></td></tr></tbody></table></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">Today we celebrate our sweet Jukie’s 22nd birthday! Through his indefatigable spirit, Jukie teaches us all how to live: mindfully and in the moment. </span></span></p><div><span class="s1"><span style="font-family: verdana;"><br /></span></span></div><div class="separator" style="clear: both; text-align: left;"></div><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOKxG3Ny_edsFvA5IVYwI9bdUeQDpKcvUdeA9h1grF5Urw9bSxlfeOfXTKlmvwKjci1K4QppvOvRDvpSHvkgH7IErqQysWbq4DeoNQq-Ap9psXrK0Em6lLsy1-LtvIlHh0Gt9sIuuARW4Y2LrO2fvNx131D8oYdghXEA_vVkFEuhx8t7wwUAqoJmxQ/s2424/2FD1AF1E-06F7-4136-99A7-936FA100D77B.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2424" data-original-width="2424" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOKxG3Ny_edsFvA5IVYwI9bdUeQDpKcvUdeA9h1grF5Urw9bSxlfeOfXTKlmvwKjci1K4QppvOvRDvpSHvkgH7IErqQysWbq4DeoNQq-Ap9psXrK0Em6lLsy1-LtvIlHh0Gt9sIuuARW4Y2LrO2fvNx131D8oYdghXEA_vVkFEuhx8t7wwUAqoJmxQ/w400-h400/2FD1AF1E-06F7-4136-99A7-936FA100D77B.jpeg" width="400" /></a></span></div><span style="font-family: verdana;"><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;"><br /></span></span></p>He invites us to notice the gentle wind rustling leaves in the trees, to listen to the sounds of birds calling one another. </span><span style="font-family: verdana;">Wherever you are, Jukie says, be there fully. </span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkV67sZMPk6BImH-j2NdRyNQ6TVlUY4_99pTcULm9J1j5j8ZtN_I5ERE_X2A3zUKvjRI5yOgIf-AAkiSez04EYskJRxFuXtWfo_sFSRRUmlmxgUTNGCNkQeD8lHLpsQR5CL2nE_VMJV1CR8EVky1gFOmEU_H1Wp9KtxHM9M0uJrUl06mpEMtqhVqr/s2048/9C904A85-8C77-4FB8-B9C7-5E422721C9DE.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1897" data-original-width="2048" height="370" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYkV67sZMPk6BImH-j2NdRyNQ6TVlUY4_99pTcULm9J1j5j8ZtN_I5ERE_X2A3zUKvjRI5yOgIf-AAkiSez04EYskJRxFuXtWfo_sFSRRUmlmxgUTNGCNkQeD8lHLpsQR5CL2nE_VMJV1CR8EVky1gFOmEU_H1Wp9KtxHM9M0uJrUl06mpEMtqhVqr/w400-h370/9C904A85-8C77-4FB8-B9C7-5E422721C9DE.jpeg" width="400" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;">And through his endless expressions of joy, Jukie teaches how to love. Reach for the hands of your loved ones. Throw your arms around them when you see them. Delight in one another.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLdCuAvcphjO4cDLp8iPJIFF1TXFEjy_GDyJCjL8MWPsbMntEu3Few5ldYZe5ufecmANAdim1UtU1Mpd-2YywVYB9y87As4Pjnk_Y7U00iEONuxBrF5yaejMOZzcMr88gsUJCnlJmUjpAUgL7Rk-a8zf31DTLN9P1m05KoSZCZLqHfXSWGJVbKdG-/s3814/AF9A73CD-6E9E-4296-BBC8-2C529DD21FF8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2860" data-original-width="3814" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDLdCuAvcphjO4cDLp8iPJIFF1TXFEjy_GDyJCjL8MWPsbMntEu3Few5ldYZe5ufecmANAdim1UtU1Mpd-2YywVYB9y87As4Pjnk_Y7U00iEONuxBrF5yaejMOZzcMr88gsUJCnlJmUjpAUgL7Rk-a8zf31DTLN9P1m05KoSZCZLqHfXSWGJVbKdG-/w400-h300/AF9A73CD-6E9E-4296-BBC8-2C529DD21FF8.jpeg" width="400" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;">We are the lucky recipients of Jukie’s many gifts. And we are so grateful for his presence in our lives. 🧡 </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;"><br /></span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-25000496128314562482022-09-16T20:51:00.001-07:002022-09-16T20:51:19.156-07:00Collegiate Closure in Wisconsin<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Ckr_0zaM72P7tW-M2zF-VoRU689Q0tvvEHg7B9U_LRXuyIKUiWfqvVpkXDOSH7UYTQBfG6HjUpPRp3DoBoHxdOTlNgCf1c6b-nYckOd8WZ_ON0c6Xp62j0VRpZJnOnZ-tfnisOf1KeC7Lc7GgXeUYy7tsk4IXMYXKTi8CKa0hXk7vsB0G8yIQisD/s3592/9E4A6471-DBAD-4CC9-AA34-9CAA3256CFF3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3592" data-original-width="2694" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4Ckr_0zaM72P7tW-M2zF-VoRU689Q0tvvEHg7B9U_LRXuyIKUiWfqvVpkXDOSH7UYTQBfG6HjUpPRp3DoBoHxdOTlNgCf1c6b-nYckOd8WZ_ON0c6Xp62j0VRpZJnOnZ-tfnisOf1KeC7Lc7GgXeUYy7tsk4IXMYXKTi8CKa0hXk7vsB0G8yIQisD/w300-h400/9E4A6471-DBAD-4CC9-AA34-9CAA3256CFF3.jpeg" width="300" /></a></div><div class="separator" style="clear: both; text-align: right;"><span style="font-family: verdana; text-align: left;"> </span></div><p></p><p><span style="font-family: verdana;">My daughter last saw her college campus in Wisconsin in March of 2020 in the rear-view mirror of a van I was driving to California. Her brother, Truman, my BFF Mary, and I had flown across the country to rescue her. The pandemic had just begun, and she was told that she needed to move out immediately. None of us could have predicted that she wouldn’t return to campus for two and a half years, that is, not until today. </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUB9ktF9_uX6PubTNTOeByiJlvOqnzocjupfqnqq8JNmjRUvvTen2FKGLJNl4avEcIQkWWCwgRaXMfpCtIabFd0j_uNeUvT4HQ1cMruziFZ9UYkiCl5wjx3nofHMhZ1uNfFjgyHjvWK0myaOtK11jxHsMvd_Wl01IjyJwMhnnKxdukuIutw52xMJ5s/s3300/CD677419-C7B1-4143-8580-80BB49BE13CB.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3300" data-original-width="2475" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUB9ktF9_uX6PubTNTOeByiJlvOqnzocjupfqnqq8JNmjRUvvTen2FKGLJNl4avEcIQkWWCwgRaXMfpCtIabFd0j_uNeUvT4HQ1cMruziFZ9UYkiCl5wjx3nofHMhZ1uNfFjgyHjvWK0myaOtK11jxHsMvd_Wl01IjyJwMhnnKxdukuIutw52xMJ5s/w300-h400/CD677419-C7B1-4143-8580-80BB49BE13CB.jpeg" width="300" /></a></div><span style="font-family: verdana;"><p><span style="font-family: verdana;"><br /></span></p>Many of you remember our National Disaster Massive Road Trip (NDMRT), as Truman named it. We rented a huge van, which we immediately named The Beast, and which still barely fit all of Geneva’s belongings, and we drove four days back to California. On the NDMRT, we encountered many fellow unhinged cross-country travelers, everyone trying to get somewhere fast, all of us eyeing each other with trepidation as we sought to keep our distance from one another, both on the road and at every rest stop. </span><p></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1PKr2l3k6_4E_Zj-J8csJRTb09zo4MlLGJa1WKaN0mugXzFm7vjLrfF0z5Ta1TENlHRiZ6m5ok7Ou9eqY54B5veayjtP0bY3bqdkWMJyGB60c84xc9mYSE3JcrR7EWUHYkQ1yfK3tWv8Kd2xGDUVulHJ8Loh_dpZQhykp6QY1d-kSxhzTzcae7fvq/s4032/22FDE227-A575-4FF4-8E61-D74682A325F1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1PKr2l3k6_4E_Zj-J8csJRTb09zo4MlLGJa1WKaN0mugXzFm7vjLrfF0z5Ta1TENlHRiZ6m5ok7Ou9eqY54B5veayjtP0bY3bqdkWMJyGB60c84xc9mYSE3JcrR7EWUHYkQ1yfK3tWv8Kd2xGDUVulHJ8Loh_dpZQhykp6QY1d-kSxhzTzcae7fvq/w300-h400/22FDE227-A575-4FF4-8E61-D74682A325F1.jpeg" width="300" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">The trip felt both surreal and perilous, as if we were living out a real-life disaster film. On the third day, we white-knuckled The Beast through a blizzard atop a Wyoming mountain pass, a heart-pumping, frightening experience of unplowed roads and icy white-outs. At the hotel that evening, I was filled both with relief that we had survived the day’s drive, and with the sense of trauma we were all just beginning to experience; we were never going to forget this NDMRT or the earliest days of our new pandemic mindset.</span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fZoTYC9mOZBq8snj3TZnhnOYfkNuRfp16eFq37SEfW5zw7s4iccBTiWg48NocEHcE7WSWZA_mgppw9iwUa3EkrOoajKK_YbzixxBhnsMr9ETjCfqnRng9vgV2nwahjaH624BA0bX6TWNmjRGAACFF95lVk6_7GBoJ5H5FDnTAeqDKfUOD876doF1/s4032/C0BAB8C8-C551-4D71-81D8-FDCEA5284E93.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fZoTYC9mOZBq8snj3TZnhnOYfkNuRfp16eFq37SEfW5zw7s4iccBTiWg48NocEHcE7WSWZA_mgppw9iwUa3EkrOoajKK_YbzixxBhnsMr9ETjCfqnRng9vgV2nwahjaH624BA0bX6TWNmjRGAACFF95lVk6_7GBoJ5H5FDnTAeqDKfUOD876doF1/w300-h400/C0BAB8C8-C551-4D71-81D8-FDCEA5284E93.jpeg" width="300" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">Our stage of life determined how the pandemic would affect us. Like all kids, my children had to negotiate years of disrupted academic and social development. My parents had to isolate themselves in their senior living apartments. As they were among the most vulnerable to Covid, we worried for them daily.</span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiANja5kK4Kowu9FVtrY6vuTXD6ZsyMQXk3kf0WDZToW_IT0gdJS4xFZXXSl1QcAomoAPCQBQ_WXC3wGbk5ExR4lF4BA0ZQwgk6MAOD7eOq6-YXTR1XUXK9d-4vVYsuXPP7iarlCXrOmCJiJ5u_b9CQN18cpLOlto6fxs5wDwrwigBmoOzhfkrD2ypb/s4032/12D1299A-B877-494D-A99F-2D1D524197C1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiANja5kK4Kowu9FVtrY6vuTXD6ZsyMQXk3kf0WDZToW_IT0gdJS4xFZXXSl1QcAomoAPCQBQ_WXC3wGbk5ExR4lF4BA0ZQwgk6MAOD7eOq6-YXTR1XUXK9d-4vVYsuXPP7iarlCXrOmCJiJ5u_b9CQN18cpLOlto6fxs5wDwrwigBmoOzhfkrD2ypb/w300-h400/12D1299A-B877-494D-A99F-2D1D524197C1.jpeg" width="300" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">I think especially of one group that was hit particularly hard: graduating seniors. Their lives came to an abrupt halt just as they were supposed to “commence.” Their best year of school ended suddenly with no final projects, no dances, nor even with goodbyes. Instead of moving on to exciting adulting adventures, the new graduates moved back home with their parents and watched goodbye speeches from their college presidents on YouTube. Although we were happy to have unexpected bonus time with our daughter, we knew she was devastated to miss the end of college. How does one move on to the next stage of life when the previous stage hangs unfinished and in limbo?</span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijbePqzS1HTzlihulJrGdyEKbV8ZIF-EBFiQrYAzI7focJXUtKRqsYY8gxmkmTVabV6WyyRvFk8iYAa_LS2sKfNnZZnTd-EHJ79y2oeCvo3kfsiStpYXorjst2OLqPHOArJ3M2CgRRXULiYAYWtCTgymZovykE9gHJhq7VdBN9_XCSzcflPOQuUoAi/s4032/42A706D0-A0F1-4FB5-8C3B-F7A97EAB41D1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijbePqzS1HTzlihulJrGdyEKbV8ZIF-EBFiQrYAzI7focJXUtKRqsYY8gxmkmTVabV6WyyRvFk8iYAa_LS2sKfNnZZnTd-EHJ79y2oeCvo3kfsiStpYXorjst2OLqPHOArJ3M2CgRRXULiYAYWtCTgymZovykE9gHJhq7VdBN9_XCSzcflPOQuUoAi/w300-h400/42A706D0-A0F1-4FB5-8C3B-F7A97EAB41D1.jpeg" width="300" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">This weekend, the limbo will end. Two and a half years after that fateful March adventure, we’ve returned to Beloit College for the make-up graduation ceremony that the class of 2020 never got. As we walked around campus today, our Boonie shed more than a few tears. She pointed out favorite haunts, noted what has changed and what was the same. I imagine she’s feeling so many complicated emotions. And tomorrow she’ll get to experience the graduation ceremony she and all the graduates of 2020 deserved. We’ll cheer loudly for her, and so will my brother and my parents (Beloit grads themselves, who met here 65 years earlier 🥹). I’m so grateful to be here. For Geneva’s sake, and for the sake of everyone in the family who is still reflecting on how our lives have changed, I’m so glad we made this trip.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiypDaNEjdPjNsnLZB0AiLpca1RKY7-e5Y7BzwkhB_ws3RIAWWvum0i8cZZUeqUKZkkwSBYgWtRG0XCJE0559KGb2LKJycF7d7-R0vSw7Nev-Axlylr2xQVr2lQZNWaThCUao9tglQ8K1r4J9TBUZ-2xV6TOG6IACx-oLblrsw3XLc7LGdTjskPOTz6/s4032/343D81BE-EC16-4477-9659-C0209243A89B.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiypDaNEjdPjNsnLZB0AiLpca1RKY7-e5Y7BzwkhB_ws3RIAWWvum0i8cZZUeqUKZkkwSBYgWtRG0XCJE0559KGb2LKJycF7d7-R0vSw7Nev-Axlylr2xQVr2lQZNWaThCUao9tglQ8K1r4J9TBUZ-2xV6TOG6IACx-oLblrsw3XLc7LGdTjskPOTz6/w400-h300/343D81BE-EC16-4477-9659-C0209243A89B.jpeg" width="400" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-29510892696963312522022-09-12T17:25:00.002-07:002022-09-12T17:25:34.739-07:0030 Years<p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi43VhaX1XOaU1bReVkmk8KpVSbEw0nIeenog1NmFAzm4m_VouKTJPGAMNMNh7U19tLgoVYzdU5CPEuomb4SfFkJ7NLbztOhJ3hJ9P86p5sBk63g37BdeIM9o_NJtxbaV3iabZWIjeYpUtO3Qx73U-tTdcApc72Jk53EWfJywZ_BVO8xX7WoOSI_Yyt/s973/7CBA17CF-ED4D-4D83-956B-E75A433AD839.jpeg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: verdana;"><img border="0" data-original-height="973" data-original-width="639" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi43VhaX1XOaU1bReVkmk8KpVSbEw0nIeenog1NmFAzm4m_VouKTJPGAMNMNh7U19tLgoVYzdU5CPEuomb4SfFkJ7NLbztOhJ3hJ9P86p5sBk63g37BdeIM9o_NJtxbaV3iabZWIjeYpUtO3Qx73U-tTdcApc72Jk53EWfJywZ_BVO8xX7WoOSI_Yyt/w420-h640/7CBA17CF-ED4D-4D83-956B-E75A433AD839.jpeg" width="420" /></span></a></div><p></p><p><span style="font-family: verdana;">When people ask me the secret to a long, happy married life, I want to say: marry a poet. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">Robert Frost said that “poetry is when an emotion has found its thought, and the thought has found words.” During uncertain and chaotic times, poetry consoles us as we listen closely to words that make us feel less alone and more alive. Amanda Gorman reminds us that “there is always light, if only we’re brave enough to see it, if only we’re brave enough to be it.” </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">We can’t all be or marry poets. But we can learn from them. The truth is, I have more questions than answers about the secrets to a happy life together. But I have learned well from my husband, Andy. </span></p><p><span style="font-family: verdana;"> </span></p><p><span style="font-family: verdana;">His example tells me that we should retain our humor and sprinkle it generously into our daily interactions, especially when life feels overwhelming. He reminds me of the importance of remaining curious about one another and maybe even occasionally planning surprises that knock a spouse’s socks off. </span></p><p><span style="font-family: verdana;"> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQaQG2wA5hcdm6eiLikRib_EI06Q8eLOFZ1Pfil8_KGA6dTI0FgbUd9oarjh0JlkdWkNdiI_Hcg0i3kIdiE666jWgmOYhTjSM844Jvqxh_qREtZ7YHAMSiW2qn5DIP8ngTVmB8PdzXIf52wul6NcJZHS9KMAox9uKIR45IVNE4mWmOidIxqFhPd776/s2633/A39879F2-8AE4-4067-989B-F5DEE0FB2413.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2633" data-original-width="1499" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQaQG2wA5hcdm6eiLikRib_EI06Q8eLOFZ1Pfil8_KGA6dTI0FgbUd9oarjh0JlkdWkNdiI_Hcg0i3kIdiE666jWgmOYhTjSM844Jvqxh_qREtZ7YHAMSiW2qn5DIP8ngTVmB8PdzXIf52wul6NcJZHS9KMAox9uKIR45IVNE4mWmOidIxqFhPd776/w364-h640/A39879F2-8AE4-4067-989B-F5DEE0FB2413.jpeg" width="364" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /></span></p><p><span style="font-family: verdana;">On the occasion of our 30th wedding anniversary, Andy presented me with a beautiful 167 page book with 100 previously-unseen poems he had written over the last year. Instantly, this book became my most prized possession, a physical manifestation of his love. Like Linus with his blanket, I’ve been carrying it from room to room around the house, reading a few poems at a time. I like feeling the weight of the declarations of his devotion in my hands. </span></p><p><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjay0DWWAot6DVF-wUXltDL9fvLLWYq3hXhS-nqV7MtTEeCACr_u62zFbx1Y9KlBZcbf5dIG33jkUF93LRZWODDdfB7mh2AK7reeWC2r1S2TrQfhgxTtuKxCio1qiyGM24K4MnZncWVmYNCU7Gy00HQq_dzP83CBH0OLfHD760brETYJZaPRO2LkqEn/s3414/0233ABAD-F210-4D5C-85B3-CC746ED0ED30.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3414" data-original-width="2791" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjay0DWWAot6DVF-wUXltDL9fvLLWYq3hXhS-nqV7MtTEeCACr_u62zFbx1Y9KlBZcbf5dIG33jkUF93LRZWODDdfB7mh2AK7reeWC2r1S2TrQfhgxTtuKxCio1qiyGM24K4MnZncWVmYNCU7Gy00HQq_dzP83CBH0OLfHD760brETYJZaPRO2LkqEn/w328-h400/0233ABAD-F210-4D5C-85B3-CC746ED0ED30.jpeg" width="328" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p><span style="font-family: verdana;">The other well-kept surprise Andy planned was a backyard gathering of friends, there to celebrate our 30 years together. I knew my sweet husband must have something up his sleeve because he’s romantic like that. Like the evening we said “I do” all those years ago, this was a night I will always remember. Thank you, Andy for 30 years of love, laughter, play, and adventure. Let’s have 30+ more❣️</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkz2g4ecp0fReXK_3Tv6oKDWFwQd_I3fX4atcrDF3AFokLqa6PoE5LbNJAWQEAsdalkmtYlP_zWf_XzbHIvGGsJwSh4dlSg7Ahs8dfQVDG_e9K0LFIPHJsS0evxqEWz4WgpAHJINSs6FG3B_P_4_fhd8i4EOZ1rRo-119cIF4xCKCbfrjoYq2Kz4UW/s3533/DF5273A8-CDD3-4FCA-9917-0A28BFB85740.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2578" data-original-width="3533" height="293" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkz2g4ecp0fReXK_3Tv6oKDWFwQd_I3fX4atcrDF3AFokLqa6PoE5LbNJAWQEAsdalkmtYlP_zWf_XzbHIvGGsJwSh4dlSg7Ahs8dfQVDG_e9K0LFIPHJsS0evxqEWz4WgpAHJINSs6FG3B_P_4_fhd8i4EOZ1rRo-119cIF4xCKCbfrjoYq2Kz4UW/w400-h293/DF5273A8-CDD3-4FCA-9917-0A28BFB85740.jpeg" width="400" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-65561236805433895102022-07-10T22:37:00.000-07:002022-07-10T22:37:06.423-07:00Our Antidote<p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioOEqpGduNv59fAose5mYx4TVB-AqnPsylI8ka-6qPjl-xenik2PiMsXv2t6lwbDVENahlRhlfamZFfIIWkO6egP_64DCveXL96HU1GITDohycnyWh_Hox6x5BbFsVMlKaIwM8L4UsNRJutAzSzWPKNZs-QbWlN18OkcqFaWlF0fgMyqFZs3pyJgw1/s1800/12F8A5EF-5C97-4AF5-A489-CD14AFB5A7F2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioOEqpGduNv59fAose5mYx4TVB-AqnPsylI8ka-6qPjl-xenik2PiMsXv2t6lwbDVENahlRhlfamZFfIIWkO6egP_64DCveXL96HU1GITDohycnyWh_Hox6x5BbFsVMlKaIwM8L4UsNRJutAzSzWPKNZs-QbWlN18OkcqFaWlF0fgMyqFZs3pyJgw1/w320-h400/12F8A5EF-5C97-4AF5-A489-CD14AFB5A7F2.jpeg" width="320" /></a></div><span style="font-family: verdana; text-align: left;"><p style="text-align: center;"><span style="font-family: verdana; text-align: left;"><br /></span></p><div style="text-align: left;">The world is all too much right now. I’m continually feeling the need for a recharge and a reset, and I find that nothing fills this wish like a getaway to the sea. If I could, I would begin and end every day with wet, sandy feet, with wind-blown hair, and with a walk along the beach. Some like the mountains. I prefer the ocean. </div></span><p></p><p style="text-align: center;"><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzNQPdNHikaIloo7COWU5lzwex6cxqolBhiXVb0WZWj9K58rJ-nG1p1jEPVgtzf343w0r2hrWl4COYxs14gEzpEfhH-so3FppKJc1HUTQwYxzXGHYtpgsYmQiYg5WmFda0zVcebLqYBif_2acz-6xKxBTmpJjiHCJh6zSSSKE-YiKM-ESC5QztQUe/s3820/0A799289-6DB1-4FA2-A12F-955D6C442A90.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3820" data-original-width="2865" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzNQPdNHikaIloo7COWU5lzwex6cxqolBhiXVb0WZWj9K58rJ-nG1p1jEPVgtzf343w0r2hrWl4COYxs14gEzpEfhH-so3FppKJc1HUTQwYxzXGHYtpgsYmQiYg5WmFda0zVcebLqYBif_2acz-6xKxBTmpJjiHCJh6zSSSKE-YiKM-ESC5QztQUe/w300-h400/0A799289-6DB1-4FA2-A12F-955D6C442A90.jpeg" width="300" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p style="text-align: left;"><span style="font-family: verdana;">Maybe it’s the negative ions in the salty, humid air that calm my mind and lift my mood. Maybe it’s the gentle acupressure on the soles of my bare feet in the sand that grounds me and connects me to the earth. Maybe it’s the sound of the crashing waves that puts me in a meditative state and slows my own rhythmic breathing. Maybe it’s the memories of so many hours watching my children explore tide pools and fill endless buckets of watery sand that comfort me.</span></p><p style="text-align: center;"><span style="font-family: verdana;"> </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhes59UxSWlTwaj0KmNgFN-W6crc02PAGCU-e2RTkWh32epXTDPOSVzw9LWCa6_v-i561bd_1G5BcQqTqHj5vPNhTQPn4V_njvktWCo_SB26EXvJzQEqFdUgW43s3nj0or3THmElfwbisXEbp6OK6QIxcCaI2OMajKC_YfPDp5KSG1h1Aa8fsUFp4oS/s1799/C5A99876-4966-4EB8-BFED-F9E788151FC0.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1799" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhes59UxSWlTwaj0KmNgFN-W6crc02PAGCU-e2RTkWh32epXTDPOSVzw9LWCa6_v-i561bd_1G5BcQqTqHj5vPNhTQPn4V_njvktWCo_SB26EXvJzQEqFdUgW43s3nj0or3THmElfwbisXEbp6OK6QIxcCaI2OMajKC_YfPDp5KSG1h1Aa8fsUFp4oS/w320-h400/C5A99876-4966-4EB8-BFED-F9E788151FC0.jpeg" width="320" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p style="text-align: left;"><span style="font-family: verdana;">The peaceful soundscape, the consoling sights, the tactile pleasures of a barefoot walk, and the endless horizon of the ocean all remind me how fortunate I am to regularly visit a place of such calm beauty.</span></p><p style="text-align: left;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg375CQJ_Q4ZP1MxesUaJnZteBKNL9i7Cr6GgXZzTEgFcceeVwy83JSBnuGWz-23OnyTkZhxGylPR5KwcM7gc_c-1ZCrtST29gVTgHuTXYID0WPeDLWGCOXm_nFA16CF_Cq5EBDT4w2b68E2qdCjJqP6sJ6yyp5ytEhiva1mCbFBj4X-yfDgEc9LqC9/s1800/A228EB30-4F7C-4F1B-A4D8-A721621802BF.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg375CQJ_Q4ZP1MxesUaJnZteBKNL9i7Cr6GgXZzTEgFcceeVwy83JSBnuGWz-23OnyTkZhxGylPR5KwcM7gc_c-1ZCrtST29gVTgHuTXYID0WPeDLWGCOXm_nFA16CF_Cq5EBDT4w2b68E2qdCjJqP6sJ6yyp5ytEhiva1mCbFBj4X-yfDgEc9LqC9/w320-h400/A228EB30-4F7C-4F1B-A4D8-A721621802BF.jpeg" width="320" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-72043301088751088092022-06-19T21:11:00.000-07:002022-06-19T21:11:21.102-07:00Daddy Brings It<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjckBxuah09IX4FzIEbZWrA3ZIkhMRqugiu71JhkFyHYB0idpg9AEJrzHLwcQxbEgiOrb10BRNhPw3iONrGNgOXCG7Msj_yPGW9qpRAx4h1tdn0QcNsYfLKLS5hpBN_bXl9CDlCkOPbRldsvYmaBQznWjKgXb9wMv4wfmyDWjplbB4Xi0Qo5pTVwYCH/s1440/8548C4CE-95C7-4672-91C3-5C14F8FDEC8B.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjckBxuah09IX4FzIEbZWrA3ZIkhMRqugiu71JhkFyHYB0idpg9AEJrzHLwcQxbEgiOrb10BRNhPw3iONrGNgOXCG7Msj_yPGW9qpRAx4h1tdn0QcNsYfLKLS5hpBN_bXl9CDlCkOPbRldsvYmaBQznWjKgXb9wMv4wfmyDWjplbB4Xi0Qo5pTVwYCH/w400-h400/8548C4CE-95C7-4672-91C3-5C14F8FDEC8B.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: verdana;"><br /></span></div><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">On this Father’s Day, I’m reflecting on my good fortune in meeting this man all those years ago. When I chose him to be my guy, I knew that in addition to being a man of great integrity, intelligence, compassion, and all-around goodness, he would be an exceptional father. Watching him interact with our kids in all of life’s daily, small moments brings me such delight. Even though there are all kinds of demands on Dr. Andy’s time and attention, Daddy Andy’s primary priority has always been the kids and me.</span></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;"> </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: center;"><span class="s1"><span style="font-family: verdana;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcybnMPYoqAa9myH56s8q0qSTb5_RfvBOYud16MXa48iVzelSiOes15CrjKBeJgrkwzJbBEGZjG1z7Cs527YWHo-_DJK_LoVbjcQHq_rG-7o0iZDphFTT4ckpRPod5aiUIt11xnZ076y4lMvnASAhgYtBvrzp0gbASxaW8fVJsCV_pNoyRDRkbGxxN/s604/0FB5806D-E206-4FDC-8241-BE539DCE4F35.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="604" data-original-width="421" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcybnMPYoqAa9myH56s8q0qSTb5_RfvBOYud16MXa48iVzelSiOes15CrjKBeJgrkwzJbBEGZjG1z7Cs527YWHo-_DJK_LoVbjcQHq_rG-7o0iZDphFTT4ckpRPod5aiUIt11xnZ076y4lMvnASAhgYtBvrzp0gbASxaW8fVJsCV_pNoyRDRkbGxxN/w279-h400/0FB5806D-E206-4FDC-8241-BE539DCE4F35.jpeg" width="279" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><br /></span></span></p><div style="text-align: left;"><span style="font-family: verdana;"><span style="text-align: left;">Andy brings the joy. Spontaneous dance sessions in the living room have been known to occur, whether the kids want them or not. When he walks in the front door, Andy brings his smile, a happy greeting for all, and a kiss for me. He’s a naturally positive person who gives everyone in his life his best self.</span><span style="text-align: left;"> </span></span></div><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: center;"><span class="s1"><span style="font-family: verdana;"> </span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfTRD10YE6Sv7GihQlu9ogOwyzjeojP8SmUlNSTusgsaZT8ZIDFY-CUHmHblIDFOWTFngkzT0jOZ2XawNES-vphRjbQkiy7hJXW0JGiiymORO846fx9exK6LOTPseiAZNu6PNOf0Ahh51VHhS8PjgdpqIOJwqTuXi1TfQzC7fEdc4HX9KavPnU3KRB/s1440/42A6EC3A-1F92-4571-AEEC-735C522668A9.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfTRD10YE6Sv7GihQlu9ogOwyzjeojP8SmUlNSTusgsaZT8ZIDFY-CUHmHblIDFOWTFngkzT0jOZ2XawNES-vphRjbQkiy7hJXW0JGiiymORO846fx9exK6LOTPseiAZNu6PNOf0Ahh51VHhS8PjgdpqIOJwqTuXi1TfQzC7fEdc4HX9KavPnU3KRB/w400-h400/42A6EC3A-1F92-4571-AEEC-735C522668A9.jpeg" width="400" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">Andy brings the teaching. As one might expect in our home, impromptu writing lessons at the dining table frequently occur. Soon after they could read, Andy began dissecting sentences, and later, paragraphs, with the kids. He instilled in them an interest in writing. That interest developed into a passion. As a result, both our bookend kids call themselves writers. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: center;"><span class="s1"><span style="font-family: verdana;"> </span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwdZxalIM_wSt2yuefcgtyq8BEdtOBXuy1hvU89efckxngrc27ZyVks2ai_F8Vsxmt1L4eVJqywXRe6rGx3ck5Z740JmXBxlWoP4AtTCDqu7kqhO5v6JBOcARlwVJsA_6BpTe4CY5Tz3GZK6OhGEB93nfj7yeG7_cSejbsOJd2r09eZ_S895RpgVor/s604/0668D1CC-EEB9-44B9-BC39-7CF0713CA1AB.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="604" data-original-width="604" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwdZxalIM_wSt2yuefcgtyq8BEdtOBXuy1hvU89efckxngrc27ZyVks2ai_F8Vsxmt1L4eVJqywXRe6rGx3ck5Z740JmXBxlWoP4AtTCDqu7kqhO5v6JBOcARlwVJsA_6BpTe4CY5Tz3GZK6OhGEB93nfj7yeG7_cSejbsOJd2r09eZ_S895RpgVor/w400-h400/0668D1CC-EEB9-44B9-BC39-7CF0713CA1AB.jpeg" width="400" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">Andy brings the energy. He’s up for practically anything and loves new adventures. Many locals have witnessed his daily walks with Jukie. They leave the house each day, often with no destination in mind and return hours and miles later with tales of new friends made and old friends encountered. One can measure their stamina in the shoes I have to replace every couple months. “Better shoes than cars,” Andy says. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: center;"><span class="s1"><span style="font-family: verdana;"> </span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_rFEizK7_yd4yOf64DXkzIOJssdIGlmwPjjQhgA3oGFzuu18RgQRpbZluCvmQOadh5sqaNcMHfVBZe0jPu7QC-z966PJ9zwfwWOYAEYxlYqd1iLGP2nZO-7UXDG9T5d7B04lCOSfUONNERXliR9Nq9eoBmn0YFWDfquN-qdORYipUrGk8gopzpU4M/s1440/BFC8A0B3-6E3B-4C82-BC12-4B8DC6B9A621.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_rFEizK7_yd4yOf64DXkzIOJssdIGlmwPjjQhgA3oGFzuu18RgQRpbZluCvmQOadh5sqaNcMHfVBZe0jPu7QC-z966PJ9zwfwWOYAEYxlYqd1iLGP2nZO-7UXDG9T5d7B04lCOSfUONNERXliR9Nq9eoBmn0YFWDfquN-qdORYipUrGk8gopzpU4M/w400-h400/BFC8A0B3-6E3B-4C82-BC12-4B8DC6B9A621.jpeg" width="400" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">Andy brings the laughter. He can’t sit anonymously in a dark theater without his distinctive, unrestrained, and ultimately contagious howl giving away his presence. Even though we’re all used to seeing a microphone in Andy’s hand, he rarely needs one because his voice projects. When our kids were little, I regularly had to remind Andy to quiet his natural stage voice during nap time. But the laugh — he can’t help that. We can hear it from every corner of the house. And no matter what I’m doing, I love that sound. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: center;"><span class="s1"><span style="font-family: verdana;"> </span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8jpwMZfEWDlDAAcUB59jM58a2LlhbGxvOIAudtEOeFwa6FC3-hHPy7OG1V3kcgPuRyHJTynxSn40To_F5NB82bkDGCU4s217nZZ5Apxcfs5Vt1R_a6K3yftLuO0BTYSmgxJAIOaxMpfkdLef5x_o3TA84vt-xBzZn3josDDxO1YJ9SJFpyOaGZUDd/s1440/D2F88AE5-969F-45E5-A0E7-6919D0E5BED7.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1440" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8jpwMZfEWDlDAAcUB59jM58a2LlhbGxvOIAudtEOeFwa6FC3-hHPy7OG1V3kcgPuRyHJTynxSn40To_F5NB82bkDGCU4s217nZZ5Apxcfs5Vt1R_a6K3yftLuO0BTYSmgxJAIOaxMpfkdLef5x_o3TA84vt-xBzZn3josDDxO1YJ9SJFpyOaGZUDd/w400-h400/D2F88AE5-969F-45E5-A0E7-6919D0E5BED7.jpeg" width="400" /></a></span></div><span style="font-family: verdana;"><br /></span><p></p><p class="p1" style="-webkit-text-size-adjust: auto; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1"><span style="font-family: verdana;">Andy brings the care. He wakes up every morning thinking, and sometimes asking, what he can do to improve our lives. We’re on his mind all day long. We feel and appreciate his love and devotion. And I am profoundly grateful for the wisdom to have chosen Andy to be my children’s dad. </span></span></p><p><br /></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-82966473940225016742022-01-04T00:50:00.003-08:002022-01-04T01:11:52.755-08:00Choosing Joy<p style="text-align: center;"> </p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/nrd9RUwTHMo" width="320" youtube-src-id="nrd9RUwTHMo"></iframe></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><div class="separator" style="clear: both;"><span style="font-family: verdana;">Happy, happy birthday to our dear Jukie! Although it feels impossible to believe, today we celebrate the 21st anniversary of his birth. Wasn’t it just yesterday that Jukie was spinning endlessly on the tire swing in our back yard, running with abandon across the expanse of a neighborhood park, standing on his head against the wall while giggling, and running around our rooftop at midnight (while also laughing his head off)? Ah, the memories.</span></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;">No one really teaches parents how to transition through different stages of parenthood as their children grow. We discover and navigate our way through each age, learning to adjust our parenting strategies as we go. Just as one can’t ever feel quite ready to become a parent, I think we’re often not quite ready to see our kids’ childhoods end. No one tells parents how wistful they will feel when they recall hearing their kids’ young voices or holding their little hands. At the same time, nothing prepares a parent for the thrill of seeing their young adult child launch and thrive on their own.</span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;">Parenting a child with profound autism sometimes makes Andy and me feel as if we exist on a different planet from the rest of the world, a planet where everything is heightened. Parents like us fear for our children’s future, knowing they will not launch as their siblings will. We sometimes feel guilt, wondering if we are doing enough to help our kids reach their potential. We also take pride in even the smallest of accomplishments, as we know that reaching each goal took tremendous tenacity and effort. And sometimes we feel isolated, wondering if we have any idea what we’re doing. If we’re lucky, we have friends who also live in this alternate world, who know and understand. </span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;">For autism parents, birthdays can bring up a sense of ambivalence: we are reminded of all that our child will never experience, and thus we grieve for the dreams we had for our children. I don’t know what the future holds for my son Jukie. And this sense of the unknown terrifies me. And while all of those conflicting feelings leading up to my son’s birthdays are normal and expected, on the anniversary of Jukie’s birth, I protect our tenuous hold on optimism and forward momentum by choosing to focus on joy. Jukie is joy.</span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;">Zen Jukie lives in the moment, and he trusts in the world around him. He doles out pure love in high fives, laughter, and hugs, and expects and receives all of that right back. He trusts and accepts others and complies with most of what he is asked to do. He believes in sharing and being shared with, such as by snagging the lime from my drink the moment I turn my head. Sharing his big and often unexpected smile, Jukie busts out laughing when nothing seems funny, and we can’t help joining him in his infectious joy. </span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;"><br /></span></div><div class="separator" style="clear: both;"><span style="font-family: verdana;">And today, the occasion of his 21st birthday, our boy Jukie won’t quite understand the reason for the cake, the gifts, or the extra kisses. He won’t know the significance of this milestone birthday. But Jukie will feel our love, our attention, and our focus. He will know that we treasure and adore him. And we will feel so grateful, and so joyful, for having Jukie in our lives.</span></div></div>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-66625126640506760122021-04-19T18:26:00.001-07:002021-04-19T18:26:31.143-07:00Jukie Returns to “Normalcy”<p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-dFTovuhlS9Q/YH4s4ZRsBnI/AAAAAAAAE_I/VvR__pBViNklekR9TMacrq8RwTbIx48YgCLcBGAsYHQ/s2048/24B06B42-CB23-45AB-B062-4BE55B0EB344.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1365" height="400" src="https://1.bp.blogspot.com/-dFTovuhlS9Q/YH4s4ZRsBnI/AAAAAAAAE_I/VvR__pBViNklekR9TMacrq8RwTbIx48YgCLcBGAsYHQ/w266-h400/24B06B42-CB23-45AB-B062-4BE55B0EB344.jpeg" width="266" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table><span style="font-family: verdana;">Today was Jukie‘s day to return to in-person school! Although his classmates have been back in person for weeks, we did not feel it was safe to send Jukie back until he had reached full immunity after his second vaccination shot. Thank you, scientists!</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Normally Jukie takes the bus to school about 30 minutes away in the next town over. But today, Andy and I dropped him off together, wanting to see Jukie’s reactions to his old haunt, and wanting to see the reactions of the school staff that missed him so. Filming his initially skeptical reactions to the news that he was returning to school, we reveled in every element of Jukie’s triumphant return after more than an entire year without a single in-person experience with teachers, peers, or therapists. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">For the past year, school has existed only through small Zoom boxes on Jukie’s iPad. We often wonder what Jukie’s experience of the pandemic feels like to him and how he makes sense of the new ways in which the world operates. In the early days, masks on people’s faces greatly disturbed him. He didn’t understand why, overnight, everyone disappeared behind a face covering. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Although not able to communicate verbally, Jukie is highly intuitive, having learned how to read facial expressions for context and connection. In fact, reading people is one way that Jukie negotiates the common misconception that people with autism are not social. The masking and social distancing that we have all been practicing, and Jukie’s inability to engage in school activities that give him some independence from his doting parents, have made it more difficult than ever for him to connect with others and to feel a sense of normalcy. Routine is important to people with autism, and he had suddenly lost all his school routines and with no way to process any of the confusing changes. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">And can you imagine Jukie wearing a mask? He won’t even wear a Band-Aid! A year into the pandemic, I think our record at keeping a mask on Jukie is about 90 seconds. For the last 13 months, Jukie’s only outings have been his daily walks with his dad. They walked for miles and miles every afternoon and usually into the evenings. If you live in Davis, there’s a good chance you’ve encountered them walking along the greenbelts or in the arboretum, leaving behind them a trail of branches Jukie pruned from the trees they pass. Since this time last year, our two family hikers have walked over a thousand miles. I bet they’ve covered every path in town. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">We waited until this morning to tell Jukie that today he would finally be able to return to school. I’m not sure he believed us until we pulled into the school parking lot. His eyes grew wide, and I think we all felt like maybe this was a dream — it had just been so long. While many of us spend time in long conversations with others, on social media, in Zoom rooms, or in our heads, Jukie lives in the center of his own awareness. Now that Jukie has returned to the teachers who know him so well, we look forward to him blossoming into a more comfortable version of himself.</span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-AVEpxVmGW3g/YH4tMaCVFbI/AAAAAAAAE_Q/yYki6v-TpFUwJVB1nzA1ZhKx-E6Rwm5HgCLcBGAsYHQ/s2048/0B9475D7-5588-4DC4-89D4-90C8D8A78739.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-AVEpxVmGW3g/YH4tMaCVFbI/AAAAAAAAE_Q/yYki6v-TpFUwJVB1nzA1ZhKx-E6Rwm5HgCLcBGAsYHQ/w300-h400/0B9475D7-5588-4DC4-89D4-90C8D8A78739.jpeg" width="300" /></a></div><br /><span style="font-family: verdana;"><br /></span><p></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com1tag:blogger.com,1999:blog-5205523395869653952.post-63477779090099965852021-04-12T12:30:00.001-07:002021-04-12T12:30:46.042-07:00Ninth Grade: 2.0 — A Restart to High School<p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Xgcuu2joElc/YHSfCASYS9I/AAAAAAAAEyc/8QiHizvdgLoPg3oL12Oz7witmcVvFY2wACLcBGAsYHQ/s2048/1D4C344A-A2A2-4B46-8AC1-39CC5772662D.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-Xgcuu2joElc/YHSfCASYS9I/AAAAAAAAEyc/8QiHizvdgLoPg3oL12Oz7witmcVvFY2wACLcBGAsYHQ/w300-h400/1D4C344A-A2A2-4B46-8AC1-39CC5772662D.jpeg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><br /></td></tr></tbody></table></p><p><span style="font-family: verdana;">Today was Truman‘s first day back at in-person school since this all began. He was given the choice to continue distance-learning at home or to return for the last few weeks of 9th grade. He enthusiastically chose to go back to school. In fact, he may never have felt more excitement for school than he did this morning. Andy and I both dropped him off so that we could witness this moment together. Truman didn’t even mind me taking his photo, saying that he knew we would always want to remember this day.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">I know there are a lot of differing, complicated, and sometimes conflicted feelings about in-person versus distance learning. In our home, we are all fully vaccinated (except Truman, who is still too young). And as Truman has not had any in-person interaction with his peers in a over a year, we felt that consideration of his emotional well-being superseded the risk. So off he walked into school this morning, wearing pants about five inches longer than the last time he made this walk, and new shoes the size of his dad’s. He turned back for once last wave, and I recognized a hesitant smile behind two layers of mask. I kind of wish I could have followed him or peeked into the windows to catch a glimpse of how it’s all going.</span></p><p><br /></p><p><span style="font-family: verdana;">I’m thinking of parents all across town and around the country who have bravely navigated these uncharted waters, trying to keep it all together and make the best decisions for their families. And I want to express my gratitude and appreciation for wonderful teachers for the endless extra hours they’ve invested in teaching our kids with enthusiasm and diligence, all while reinventing their profession. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">I wish all the students and parents a great first day back! May we extend one another compassion and patience as we figure it all out.</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-84583661336870935182021-04-02T17:32:00.001-07:002021-04-02T17:32:41.650-07:00Seeing Jukie<p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-UxiCxgA-B5M/YGe191l6WyI/AAAAAAAAEx4/3OrkHAJCgaE5vgW1y6ZRQ6NZ_BB-i3BQwCLcBGAsYHQ/s2048/737A5140-21E4-48CC-BD53-C6F87DF25381.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1536" height="400" src="https://1.bp.blogspot.com/-UxiCxgA-B5M/YGe191l6WyI/AAAAAAAAEx4/3OrkHAJCgaE5vgW1y6ZRQ6NZ_BB-i3BQwCLcBGAsYHQ/w300-h400/737A5140-21E4-48CC-BD53-C6F87DF25381.jpeg" width="300" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"></td></tr></tbody></table></p><p><span style="font-family: verdana;">This World Autism Awareness Day, let us celebrate and show solidarity with all people with autism. On this day, and on behalf of my son Jukie, I ask for more than just awareness. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">We must promote acceptance of individuals across the spectrum, which includes recognizing the profound end of the autism spectrum: people like my son are rarely seen. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">People with profound autism need a tremendous amount of care. This burden of love leaves many families feeling defeated and depleted. Especially during this ongoing pandemic, we need the support of advocates and champions to help us ensure that those living with autism have the resources and support they need to live life to the fullest.</span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">My son is so much more than his label. He is not his autism. Autism doesn’t define him. He is a person who was born with a syndrome which causes autism. He’s more like you or I than he is different from us. Like anyone, my son seeks kindness, patience, and understanding. </span></p><p><br /></p><p><span style="font-family: verdana;">Please recognize my son’s value. Include him. Treat him with dignity. Though he cannot speak, speak to him. Though he may not look you in the eye, he sees you. My boy is a font of curiosity and of love. Look at him. See him.</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-73083715033581829242021-02-28T06:55:00.000-08:002021-02-28T06:55:47.272-08:00Rare Disease Day 2021<p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-0otIJBIjlis/YDuua2NGvVI/AAAAAAAAEww/ZGr5CMcVjw4LNbgW1CEK4FxQ8lFweVHwwCLcBGAsYHQ/s2048/F2DF8203-5D7A-4004-96C0-5224FB068806.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2048" data-original-width="1365" height="400" src="https://1.bp.blogspot.com/-0otIJBIjlis/YDuua2NGvVI/AAAAAAAAEww/ZGr5CMcVjw4LNbgW1CEK4FxQ8lFweVHwwCLcBGAsYHQ/w266-h400/F2DF8203-5D7A-4004-96C0-5224FB068806.jpeg" width="266" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><br /><br /></td></tr></tbody></table></p><p><span style="font-family: verdana;">This is my son Jukie. Jukie was born with a genetic disorder called Smith-Lemli-Opitz Syndrome. SLO is one of more than 7,000 rare diseases which are recognized today on Rare Disease Day, always the last day of February each year. A rare disease is one which impacts fewer than 200,000 individuals in the U.S. On this day, we come together to raise awareness of such diseases and show our support for one another. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Most people have never heard of Smith-Lemli-Opitz Syndrome. My husband Andy and I had never heard of it before receiving Jukie’s diagnosis when he was 10 months old. We didn’t know that we were both carriers of the gene mutations that cause SLO in one in four pregnancies for couples like us. Twenty years later, we know more about SLO than most physicians. There’s a steep learning curve in the beginning for parents like us, but we loved our little guy so much that we had to learn quickly to figure out how we could best support him. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">In a few words, SLO is a metabolic condition involving cholesterol. Many of his challenges have resulted from his difficulty in metabolizing cholesterol the way the rest of us do. We give him supplemental cholesterol every day, but the SLO metabolic error causes (and caused) much damage before birth. One of the NIH research trials Jukie has participated in reviewed how cholesterol could better reach the brain where people with SLO really need it. Jukie has participated in many medical trials, and has undergone multiple spinal taps so doctors could better understand the blood-brain barrier, but after all these years, researchers still haven’t found a way to help his brain. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">SLO causes a wide range of challenges, and every individual is unique. Sadly, because every organ in our bodies depends on cholesterol, many children with SLO die at or before birth. Andy and I have had four pregnancy losses. We’re so grateful we didn’t lose Jukie. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">On this day, we celebrate Jukie and focus on his many strengths and gifts. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Jukie lives in the moment; his example encourages the rest of us to do the same. He stops walking to look up at beautiful skies. He pauses to listen to the whoosh of the wind. Sometimes he looks intently into our eyes and touches our face. He shows us that life can slow, and we can benefit from a long pause. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Jukie communicates with PECS, sign language, and an iPad, as well as with smiles, laughter, and love. Jukie demonstrates that the most important messages can be conveyed with a look or a touch. </span></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Jukie’s joy is front and center. He seeks and finds joy throughout the day. He spreads joy with his infectious laughter and impish sense of humor. In addition to his sometimes plaintive yodeling, Jukie fills our home and our hearts with joy. We are grateful for everything he has taught us, and we invite you to join us in celebrating him on this special day.</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-64112177607769743842021-01-04T10:25:00.001-08:002021-01-04T10:35:16.493-08:00Jukie turns 20 in 2021!<p><span style="font-family: verdana;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana;"><iframe allowfullscreen="" class="BLOG_video_class" height="280" src="https://www.youtube.com/embed/SloMCgzh6ds" width="337" youtube-src-id="SloMCgzh6ds"></iframe></span></div><span style="font-family: verdana;"><br />Today Jukie turns ✨2️⃣0️⃣✨ years old. As I fell asleep last night, I thought about how we would make his birthday special. Although we could shower him with gifts, he has little interest in presents. Instead, Jukie craves our presence. So we will spend the day spoiling him with all manner of affection. And in that way, his birthday will look a lot like his every day. </span><p></p><p><span style="font-family: verdana;">Jukie can use PECS (pictures), signs, and iPad to communicate with us, but he prefers to speak to us through smiles, laughter, side-hugs, and love. Jukie’s joy infects everyone around him and fills our hearts and our home.</span></p><p><span style="font-family: verdana;">HAPPY BIRTHDAY, sweet JUKIE! 🎂 🤟🏻 🧡</span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-73892723921496218412020-08-30T23:07:00.002-07:002021-04-16T18:19:10.289-07:00The Summer of Our Discontent<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-AqzLWH-WlTc/X0yRvYe2akI/AAAAAAAAEpo/UwxpUsaMBNcq-IeBTJZlbr9NJIwucpi3wCLcBGAsYHQ/s2048/D0B644E5-DCA5-477D-8EF1-B8EE94D508F4.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1902" height="640" src="https://1.bp.blogspot.com/-AqzLWH-WlTc/X0yRvYe2akI/AAAAAAAAEpo/UwxpUsaMBNcq-IeBTJZlbr9NJIwucpi3wCLcBGAsYHQ/s640/D0B644E5-DCA5-477D-8EF1-B8EE94D508F4.jpeg" /></a></div><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;">This is the story of our rough summer.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">Some of you know that we spent the entire season selling our house...that is, trying to sell our house. A horrendous process during the best of times, this is one activity I do not advise: selling your house during a global pandemic. No one’s much in the mood to make a major life decision when we don’t even feel safe going to the grocery store. And selling your house while a deranged and tyrannical POTUS stokes fear and racism, attacks peaceful protesters and destroys democracy? It turns out that Trump-driven national instability also makes for somewhat of an uphill battle regarding home selling. Just for fun, the end of summer hit us all with the second largest wildfire in California state history at the edge of Davis. Nope. Not great timing.</span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">In order to provide that perfect showplace illusion — that five human beings did not occupy this space known as our home — we spent the summer living with the knowledge that anyone could request a showing of our place at any moment. And when these requests came, we frantically texted, or yelled up the stairs to each other, some version of: SHOWING AT 11:00! After a week or so, we developed clear duties; we all knew our roles, and we got into a frenetic rhythm. (Truman probably vacuumed, swept, and mopped the floors 25 times this summer.) Sometimes we had to stash breakfast pans in the stove and clothes hampers in the garage. Always we hid toothbrushes and hairbrushes in cabinets and stowed loose paper in drawers. Every garbage can was emptied. Every light was turned on. Every bed was made to military perfection. And we walked out our front door knowing that strangers would soon enter to judge our most vulnerable and private spaces. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">I quickly realized the wisdom of removing all traces of personal effects as I found the process invasive and intrusive; I didn’t want people looking at photographs of my children or my husband on our honeymoon. After a while, I began to feel resentful of anyone looking at ANYthing in my house. Sure, showings are part of the process, but did these people have to enter my home? </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">More than once I wanted to give up. We had had to cancel our vacation due to COVID and home-selling. Our anxiety levels seemed to increase by the day. We encountered many roadblocks along the way (starting with the shocking discovery that someone had recently stolen Andy’s identity and messed up our credit), but we navigated our way around each obstacle and never gave up. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">In the final weeks, we learned that the seller of our dream home threatened to accept a cash offer. Way too long story short: we found a buyer for our house! Just in time! We told our kids that the money was going through, and we celebrated the end of the journey: we would move into our dream house in about three weeks. We went to bed exhausted, but happy. All of our hard work and sacrifice had been worth it. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">And then we woke up the next morning to the news that overnight, the owner of the dream home sold his house to the cash-offer people. (As I see no point in going into the frustrating details here, I would just like to say that if you ever need a realtor, Chad Kime DeMasi is your man. He goes above and beyond what’s required. He did everything humanly possible to make our dream a reality.)</span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">And so you may wonder why a picture of a loaf of bread accompanies this post. It represents all of the many silver linings we have discovered through the loss of this home. </span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">One of the hardest parts about thinking of moving had been leaving all of our close friends and neighbors on the South Side. (We don’t call South Davis the South Side, but I was raised part time on the South Side of Chicago, and that sticks with a person.) We love this side of town, and we knew we would miss it. The couple who live across from us felt for our dream-home heartache and appeared at our doorstep today with this freshly baked loaf of bread. (I ate several thick pieces for dinner tonight with an extra large glass of crémant — thanks Nathan Tran and Erik Reynolds!) An act of kindness like this helps quell our sad, mopey feelings and fosters our connection to others, something we all need right now. And when doesn’t fresh sourdough bread make everything better?</span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span style="font-family: verdana;"><span class="s2">Losing our dream home gave us the gift of perspective. We already have a lovely home. Spending the summer attempting to sell it to some other family made us fall in love with it all over again. Fifteen years of memories live within these walls. Truman came home from the birth center not long after we moved here. Geneva held all of her slumber parties here. This is the only rooftop Jukie has ever explored after bedtime. </span><span class="s3">😬</span><span class="s2"> Okay, that’s a memory that I could live without. But it did happen here. Twice.</span></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 25.1px;"><span style="font-family: verdana;"><span class="s2"></span><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 21px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2"><span style="font-family: verdana;">We have not lost everything we own in a wildfire. We have our health. We have each other. And ours is a home filled with love and laughter and homemade bread, all appreciated consolations in a world of peril and uncertainty.</span></span></p>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-20526555958866756362020-05-17T07:03:00.000-07:002020-05-18T07:03:46.688-07:00On Graduation Day<div class="separator" style="clear: both; text-align: center;">
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🎓<span style="font-family: "verdana" , sans-serif;"> Imagine Geneva in a cap and gown because today was to have been our girl‘s college graduation day! The class of 2020 surely feels some heartbreak in missing their in-person ceremonies and all of the events leading up to their big moment. But we celebrate the graduates nonetheless, and all the more, recognize their growth, grit, and achievement.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Boonie graduates today with a Beloit College Bachelor’s degree in Creative Writing. She completes her college years with honors and having won the English Department’s short story award. I loved to watch her face light up whenever she talked about working as a TA for a Magazine Feature Writing class and as a tutor in the Writing Center. She’s already freelance writing, including book reviews and interviews with authors, and she plans to get her Master’s degree: Geneva wants to teach.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Geneva has already taught us lessons about perseverance, for she has faced all sorts of obstacles on her way to reaching today’s milestone. Her path wasn’t easy, so I am especially impressed with her effort. Our former Davis High Grad has become a lovely and remarkable young woman who maintains her compassionate heart and sensitive manner. It is a joy to watch her thrive.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Congratulations, Boon — We’re so proud of you and can’t wait to see what you do next!</span> 👩🏼🎓kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-73654459441331905442020-04-02T10:36:00.001-07:002020-04-02T10:36:38.069-07:00A World of Isolation<div class="separator" style="clear: both; text-align: center;">
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<span class="s1"><span style="font-family: Verdana, sans-serif;">Today on #WorldAutismAwarenessDay, let us all stand together in celebration and support of every individual with autism. Let us recognize their unique gifts and seek to understand their challenges. Let us learn from their perspective and the ways they experience the world. Let us include them, always. </span></span></div>
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<span class="s1"><span style="font-family: Verdana, sans-serif;">I thank friends for asking about Jukie’s adjustment to our new realities living with COVID-19. People with autism typically find predictability in their routine necessary for comfort and survival. They need to know what to expect in any given situation and to be offered time to adapt to proposed changes. Jukie loves school. The sight of his school bus pulling up each weekday morning fills him with joy. Long weekends are hard on him. Spring break is hard on him. Quarantine has been especially hard on him. </span></span></div>
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<span class="s1"><span style="font-family: Verdana, sans-serif;">Struggling without his routine, Jukie has taken to pacing upstairs. “You must really miss school,” I say to him. He signs, “yes,” and studies me, waiting to hear when school will resume. I know that he must miss trips (what we call adventures) to the grocery store and the farmers’ market. He must wonder why we haven’t taken him to a restaurant or to a movie theater in so many weeks now. I watch him look out his bedroom window at the cul-de-sac below. He must be wondering where all of his adventures have gone, and when they might return. Jukie has multiple underlying conditions which put him at high risk for a severe reaction to this virus, so we are not taking any chances with his health. </span></span></div>
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<span class="s1"><span style="font-family: Verdana, sans-serif;">I feel sad for Jukie, and for all of us, but I also recognize our good fortune. We have a grassy backyard in which Jukie may frolic and a trampoline on which Jukie may jump. We live on the greenbelt path which weaves all through the town of Davis, stretching for miles, and a puppy who needs our company on long walks — one of Jukie’s favorite activities. We take Jukie to the Arboretum where he can watch the ducks and squirrels and commune with the horses and the donkey. If he’s lucky, he may see an otter or a great blue heron. Jukie’s a nature boy, so our walks have always been part of our daily routine. </span></span></div>
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<span class="s1"><span style="font-family: Verdana, sans-serif;">As we all learn to navigate our new normal, we feel our anxieties rising. We’ve developed domestic routines that we must follow, and we find the dangers and the unpredictability of the outside world frightening. Perhaps our new, shared experiences offer us insight into the world of someone with autism. </span></span></div>
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<span style="font-family: Verdana, sans-serif;"><span class="s1">Let’s all support one another. Let’s show solidarity with individuals with autism today and every day. </span><span class="s2">💙</span></span></div>
kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-76023481805187100792020-03-21T06:22:00.000-07:002020-03-21T06:22:18.093-07:00Day Four of the National Disaster Massive Road Trip: Unpacking Memories at HOME!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">If you have never driven through the Tahoe National Forest in the northern Sierra Nevada, I encourage you to put it on your bucket list. When California greets you with her spectacular snowy mountains, you may never want to leave. Every time I cross the Nevada/California border on Interstate 80, I’m struck by the beauty of my state and my good fortune to get to live here. Today’s blue sky was punctuated with huge, white, fluffy clouds. The snow on the mountains reflected the sunshine’s bright rays. I glanced back at the kids, ready to suggest that they put down their devices and look out the window. They were already looking out their windows, ready for our long drive to be over. </span><br />
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<span style="font-family: Verdana, sans-serif;">Two hours later, I pulled the ginormous van into my Davis driveway, feeling as though we were returning from another world, and entering a new time. The kids and I agreed that we had been lucky on our NDMRT for so many reasons. Every detail worked out, despite a few snafus. I’m rather amazed we pulled it off. </span><br />
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<span style="font-family: Verdana, sans-serif;">The ginormous van sits at about the height of a typical monster truck, so one more jumps rather than steps down from it. This van is a beast of a vehicle that served us well, but one that I will not miss. The sheer volume of unloaded college kid belongings surprised even those of us who loaded it in Wisconsin. Was that really only four days ago?</span><br />
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<span style="font-family: Verdana, sans-serif;">Even though I wanted to collapse on the couch, I made a quick run to Nugget (a favorite local grocery store) to pick up milk and eggs and all the perishables Andy and Jukie had consumed during their time sheltering in place. The checkout guy asked me, “So, you been keeping busy?” 😳 He would soon wish that he had never asked that question. Before long he was nodding with a wide-eyed expression that reflected his amazement and his discomfort. I suspect that he will never cross Wyoming in a snowstorm while navigating a vehicle whose windshield and headlights iced over to near opaqueness about once every 10 minutes.</span><br />
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<span style="font-family: Verdana, sans-serif;">Back at home, our family of five got our second wind over dinner and took turns swapping stories about our time apart. Surrounded by my own DNA, so to speak, I was done with social distancing. Geneva, on my immediate left, gave away the three oranges that her dad peeled for her, and wolfed down her noodles and fresh rolls, while Jukie, on my immediate right, gave me all sorts of beaming smiles as he devoured his salad. He exuded joy! And Margot, she got to sleep in my lap all through the meal. </span><br />
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<span style="font-family: Verdana, sans-serif;">Geneva and Andy will finish their academic spring quarters online, with classes taught or taken in between long nature walks and bike rides, some of our favorite Davis activities. Truman has been making lists of books to read (he is finishing Return of the King now), movies to watch, and cookie recipes to try out. The last play Andy saw this month (maybe this year?) was Hamlet, in which the title character says “there is nothing either good or bad, but thinking makes it so" (or so Andy keeps telling us). This national calamity is awful, surely, as are our federal response and the man in the White House who should be leading us, but in our tiny corner of Davis this spring we will exercise social distance from everyone except those in the house, the close participants in our unexpected, extended, and, one hopes, healthy staycation. It starts for real tomorrow after we return this van with seating for 12, one which has been filled with stuff and memories that we will be unpacking for a long time.</span>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-12853476493126545002020-03-19T22:57:00.003-07:002020-03-19T22:57:58.077-07:00Day Three of the NDMRT: Menace in the Mountains!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">I feel lucky for us to have arrived in Salt Lake City safely. The Snow Hailnado we encountered on much of our drive through snowy Wyoming mountains caused the most treacherous driving conditions I’ve ever experienced. And I’ve driven through plenty of Midwestern blizzards. Visibility was awful. Snowplows were nonexistent. And thick ice kept coating our windshield wipers, necessitating frequent stops to scrape the ice. I’m so grateful to have had my fellow driver Mary with me, and can’t imagine having tackled the day without her. </span></div>
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<span style="font-family: Verdana, sans-serif;">Every day each of us discovers what our new realities look like as we navigate our new restrictions. For example, at our Salt Lake City hotel tonight, our traveling party of five was told that no more than five people can occupy the lobby at once. We had to decide who was going to stand back out in the blustery wind so that room could be made for the hotel clerk or random passers-by. </span><br />
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<span style="font-family: Verdana, sans-serif;">The former buffet breakfast is now served in individual bags, which only five people can grab at one time. Our fellow guests offered us knowing smiles as we attempted to give each other wide berths in the hotel’s narrow hallways, as if it were imperative that we not share the same Utah air. I caught myself imagining each person’s story — are they all on their way home, too? Were they as freaked out about all of this as we are? I would love to have asked them these questions, but I was in a hurry to collapse into my (also narrow) double bed, and those hallways weren’t wide enough to afford us what once might have seemed an everyday chat. </span><br />
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<span style="font-family: Verdana, sans-serif;">Tonight Mary and I agreed that we really could have done with a bottle of wine. Instead, we settled for Door Dash noodles and a rousing game of Taboo, which Truman had packed. Tomorrow I deliver Mary to the Salt Lake City airport for her flight home to Denver, upon which time I will drive the 663 miles back to Davis. We’re returning to the temperate springtime of California, all of whose citizens were ordered today to Shelter in Place, something unfathomable just a few days ago. I don’t think I have ever felt so eager to return home to my own private shelter, and to see my guys and Margot. </span><br />
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<span style="font-family: Verdana, sans-serif;">Just as rainclouds in California become snow squalls in Wyoming, so has the epidemic become an even more deadly pandemic since Truman and I left our golden state at the beginning of this week. As a “hot spot,” the Sacramento Valley may be more “hot” to the touch than anyplace else I have visited in our cross-country trip this week, but there is still no place that I would rather call my sanctuary than back in the arms of my husband and back within at least waving distance of many of you.</span><br />
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kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-78311483880815553962020-03-18T22:35:00.002-07:002020-03-18T22:35:47.249-07:00Day Two: The Outstretching Space of the Midwest<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">Day Two of our NDMRT feels more like Day 22. Is it just me, or does time now move at lightning speed? The news breaks come so quickly; we hardly register one alert buzzing in on our phones before the next news shock shakes us again. Feeling beleaguered, I find myself reacting viscerally to each incoming bit of information. Sometimes my heart races as I read aloud from my phone to whomever is nearby. I have no control over my body now as it regularly seeks either to fight or to choose flight. </span><br />
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<span style="font-family: Verdana, sans-serif;">Even in such a state, I still have control over my breathing. Deep breaths help slow my heart rate. My state of mind usually follows my heart. Worrying for all our safety, I feel that I can’t get home soon enough. </span><br />
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<span style="font-family: Verdana, sans-serif;">Slowly pulling away from Beloit College this morning felt surreal and so very sad: there were no students or faculty in sight. The moods of our small moving crew were helped by our sense of accomplishment for getting all the boxes and bins and people to fit into the ginormous van. I’m not sure any of us thought we could pull it off, but somehow we did, playing a complicated game of real-life Tetris. </span><br />
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<span style="font-family: Verdana, sans-serif;">After that, with a mix of personal relief and public dread, we drove 678 miles through rain, through Iowa, and through most of Nebraska to reach a deserted hotel in Gothenburg, population 3,574, home to The Sod House Museum. Looking around the hotel, and around the town, we felt socially distanced. The kids went for a swim, which seemed safe, what with all that chlorine and not another soul in sight. The water seemed to feel like such a fun and soothing way to end a long day. </span><br />
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<span style="font-family: Verdana, sans-serif;">Just before turning in, I look around and see that the pizza has been eaten, the many devices are charging, and everyone is asleep but me. Tomorrow we head for the mountain states and Salt Lake City, grateful that we missed the earthquake by a day.</span>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-84366217641215111842020-03-17T22:25:00.000-07:002020-03-17T22:25:38.560-07:00Day One of Four: The Ginormous Van<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">What an incredible day. Truman and I made it to Wisconsin! Finally in Beloit, I am so happy to have my eyes on and my arms around my girl. Now to the challenge: cramming everything Geneva and her partner own into this ginormous van, which feels too big to drive, yet seems way too small to encompass all the stuff these kids have acquired over the last four years. I just want to get us HOME — and as soon as possible. </span><br />
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<span style="font-family: Verdana, sans-serif;">In this uncertain new reality, we are all getting used to the idea that we cannot now come into contact with the people we love who are physically vulnerable. Today, I could not safely visit my three Illinois parents, all in their 80s. They live in Independent Living for Seniors, so there are no visitors allowed. How strange it felt to land at O’Hare Airport, and not drive straight to my mom’s home. And how could I possibly not visit a dear friend of 30 years who has been undergoing an intense treatment regime, a friend who needs every kind of support she can get? I parked outside her house, she bundled up and stepped outside, and then we stood about 10 feet apart and air hugged each other like crazy. What a strange and wistful feeling to have to keep your distance from a beloved friend you want only to throw your arms around.</span><br />
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<span style="font-family: Verdana, sans-serif;">And then finally, at Beloit College, we are all feeling so sad about saying goodbye to Geneva’s college experience prematurely. I had imagined that Geneva would be wearing a cap and gown the day we moved her out of her final campus residence. During what should be the end of spring break, most of the dorm rooms and apartments now sit empty of students but full of their belongings. Now everyone must leave. The virus struck our country so quickly; of course all the students had intended to return. Nothing is normal. Nothing feels right. </span><br />
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<span style="font-family: Verdana, sans-serif;">Tomorrow we attempt our most ambitious day of driving, and straight into a snow storm. As a Californian since age 24, I wonder if I even remember how to drive in the snow. My first day of Driver’s Ed took place during a Chicago blizzard, so I suppose I can handle weather. I’m so grateful for my bestie Mary who flew up from Denver to provide driving relief, moral support, and lots of laughs. </span><br />
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<span style="font-family: Verdana, sans-serif;">Meanwhile, we all must flatten the curve! As more and more of us “shelter in place,” I hope your adventures this week are domestic, warm, and at least a six-foot distance from those outsiders who do not share your DNA. I’m thinking about all of you, and hoping we all stay safe and well. </span><br />
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<span style="font-family: Verdana, sans-serif;">Nebraska, here we come!</span>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-77644426369554787722020-02-29T00:05:00.001-08:002020-02-29T00:05:56.856-08:00A Plea on Leap Day<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Today on Leap Day, the rarest day of the year, we celebrate Rare Disease Day. On this day, we seek to advocate for and to raise awareness all around the world of the more than 7,000 rare diseases which typically receive little or no notice, as most people have never heard of them. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">My son Jukie was born with Smith-Lemli-Opitz Syndrome (SLO). SLO affects between 1 in 20,000 to 1 in 60,000 individuals and is primarily seen in people with European ancestry, and rarely in Asian and African populations. People with SLO cannot metabolize cholesterol properly, which affects every system in their bodies. All have some degree of Intellectual Disability, most have ASD (autism), and researchers have found that heart, lung, and kidney defects are common among those with the syndrome. Most kids with SLO struggle with motor development, feeding issues, and behavior challenges. And saddest of all, many of our children die as SLO has a high mortality rate. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Children with disabilities are often defined by what they cannot do. My 19 year-old son Jukie, for instance, cannot speak. He can’t drive a car or take a date to a dance. He can’t go for a walk by himself or read a book. The list of “can’ts” seems endless; even all these years into his diagnosis, this list threatens to break my heart. But there’s another long list of things that Jukie can’t do on which I choose to focus.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">As he is filled with love and innocence, Jukie cannot treat others unkindly. He greets everyone he encounters with the same sweetness. Jukie is everyone’s ally. He is incapable of bigotry, intolerance, or bullying. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Jukie is unimpressed with titles or prestige. Whether he’s meeting one of California’s U.S. Senators or Mikey Mouse at Disneyland, Jukie sees all as his equal. When we toured the White House years ago, Jukie assumed that roped off rooms were merely jungle-gym invitations to sit on antique chairs. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Jukie doesn’t experience sibling rivalry. Competition doesn’t exist for him, so he loves his brother and sister without the typical complexities which get in the way of sibling relationships. When he hears the voice of big sister Geneva (who lives thousands of miles away at college) on the phone, he waves and blows kisses. His smile tells me how much he loves her. When his little brother Truman gently redirects him many times a day, he accepts the correction even though Jukie is five years older and fifty pounds heavier. Jukie allows his little brother to play a big brother role and offers many regular, spontaneous hugs as evidence of his love and affection.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Jukie is filled with wonder, especially out in nature. He notices the tops of trees, morning dew on blades of grass, and just the force necessary to prune a neighbor’s fruit tree. He loves two-person bike rides (for he doesn’t pedal), greenbelt walks, and unknown vistas. Tie his running shoes tight, and he is ready for an adventure! Jukie has lessons to teach many of us about opening our eyes wide and filling the spacious “now” with his presence.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">While we have learned many of those lessons from Jukie, every week on Facebook and via email I meet parents of children who have been newly diagnosed with Smith-Lemli-Opitz Syndrome. I am often the first person to disclose some of the difficult realities that I know well, sharing with parents truths that I wish I didn’t have to reveal. That’s why I donate my time as Director of Communications and Family Support for the Smith-Lemli-Opitz Foundation, so that I can connect the parents of new patients with other families spread all over the world and with the most knowledgeable specialists, and so I can raise money to fund research into this rare syndrome on Rare Disease Day.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">If you are able, please consider helping people like Jukie, for the Foundation supports the thousands of individuals worldwide who have someone in their family as rare, as wonderful, and as deserving of care as is our beloved Jukie.</span><br />
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<a href="https://www.smithlemliopitz.org/donations/">https://www.smithlemliopitz.org/donations/</a>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-60908242403820019112020-02-17T23:42:00.000-08:002020-02-18T09:29:29.863-08:00Diagonal Adventures<div class="separator" style="clear: both; text-align: center;">
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All year long, we look forward to the second week in February. We get to spend it in San Francisco, which I think is the just about best place to spend a few days seeing sights. As we’re a family of writers, attending the San Francisco Writers Conference has become a family affair. Andy presents poetry summits by day, and with a quick change of clothes, dazzles as host of the jazz and poetry performances. This year, Truman participated in his first conference workshop for young writers. Some of you may know that Truman has completed a draft of his first novel (titled “The Impossible Luna Jade”), so he had some context for the lessons he was learning about writing. I enjoyed watching Truman excitedly exchanging texts about his experience with his big sister, off at college. Next year, she will attend as a conference volunteer and as a recent college graduate with a degree in creative writing. </div>
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Because we take a similar trip every Valentine’s Day week, I can use this week to assess my kids’ (and dog’s) growth, physical as well as emotional. For instance, I should be used to Truman’s deep voice by now, but I’m still startled when I hear him intonate a phrase like “Let me check my phone to see what restaurants are nearby.” And I should be used to his height, but it still surprises me when I notice that my walking buddy now looks me in the eye!</div>
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While the Writers Conference is a big draw for us, any time we spent not thinking about, talking about, or dreaming about writing, we spent exploring the City on foot. Remembering tiny Margot’s fatigue on long walks this time last year, I took along her puppy sling, imagining that she would need to be carried when her wee Frenchie legs grew tired. But never did she slow or even pause during our typically 15,000-step journeys. Evidently, our daily four-mile walks had prepared her well for a series of grand city adventures. She seemed to delight in every moment. And why not? SF is crawling with dogs, especially Frenchies, and people who love Frenchies. Margot received significant love from dozens of strangers. I think she thinks she is famous! </div>
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As we set out each day, we had a general sense of where we were headed, but by now we know the City well enough to navigate without the use of maps, which could spoil the fun. Besides, we feel that the best discoveries are the surprises we happen upon, such as the time we looked up to see what Jukie found so interesting in the sky: it was the parrots of Telegraph Hill. While lost in Golden Gate Park, we stumbled upon Shakespeare Garden, a popular site for weddings. And have you visited The Musée Mécanique? Who knew there was a museum filled with antique working arcade games down at the wharf? </div>
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We could walk so much and so far because Margot was full of energy, because my knees lasted longer than expected, and because Jukie used all of his best behavior, even though we know grueling marches can be hard on him. I couldn’t blame him when he repeatedly stood stock still in front of me during the long climb up to Nob Hill. I encouraged him with, “There’s a park at the top!” He shook his head “no.” “I’m not pushing you up this hill,” I said. He signed, “yes.” We compromised by pausing every so often to eat bananas. And when we finally did reach the top, we delighted in hearing the bells of Grace Cathedral, which rang for many minutes, and which prompted Jukie to stand and watch the bell towers. People out walking their dogs stopped and sat on benches to listen. I don’t know if there’s a more magical sound than its forty-four bell carillon. </div>
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Because we were stopped so often by Margot’s new fans, on our long walks Jukie had opportunities to rest and to share affectionate hugs, gentle head bonks, and kisses with Truman and me. Sleeping in (thank you, blackout curtains) and diagonally in a double bed next to his brother, Jukie must have realized that we were on vacation. I think the whole family is ready for another hilly adventure!</div>
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<br />kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0tag:blogger.com,1999:blog-5205523395869653952.post-39166668460466768572019-12-09T00:14:00.001-08:002019-12-09T00:14:44.173-08:00Pure Presence<br />
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<span style="font-family: "verdana" , sans-serif;">Andy and Jukie have the most purely present relationship I have ever witnessed. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Anyone who has seen these two together has noticed their special connection. Early on, Andy earned the title of Jukie Whisperer, for he can intuit Jukie’s needs and manage his sometimes challenging behavior with gentle, firm direction and greater ease than anyone else. Jukie listens to his daddy. And Jukie adores his daddy. They communicate differently than most fathers and sons as Jukie uses a combination of sign language, PECS, and his iPad to speak for him. But mostly, they communicate through love, laughter, and play. There is a delightful surplus of spontaneous affection in our home.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I often hear reports from friends and acquaintances of Jukie/Andy sightings around town. “I saw them riding down third street on their cargo bike,” they’ll say. “I saw them sharing kettle corn at the Farmers’ Market last Saturday.” “They were at an art gallery for a poetry reading, and Jukie was so well behaved.” People often compliment Andy’s parenting. He’s patient and sweet with our boy. He takes Jukie on adventures all over Northern California, and they are seen in museums, performance venues, and college lecture halls: places one might not think to take a kid with Jukie’s particular differences. What people don’t see is that Jukie is also teaching Daddy. Yes, Daddy works his parenting magic, but Jukie is the master teacher.</span><br />
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<span style="font-family: "verdana" , sans-serif;">While Andy regularly practices Zen meditation, Jukie seems to live with Zen in his heart. Quietly attentive, Jukie’s natural state is peaceful and relaxed. He lives in the present with his attention sometimes focused on the beauty of nature: the wind in the trees, the clouds in the sky, and the French bulldog puppy in his lap. He studies pictures that he loves, pointing to show us what he notices. Sometimes out of context, loudly, and often, Jukie laughs, reminding us not to take life so seriously. He touches our faces when he wonders what we’re thinking. And he climbs in bed at the end of the day, and sometimes before the day has ended; Jukie always knows when he’s had enough.</span><br />
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<span style="font-family: "verdana" , sans-serif;">If I’m being real, I need to add that it’s not always easy being Jukie’s mama. I worry all the time about issues that parents of typical kids don’t imagine. Sometimes his frustration overwhelms him, and he erupts. I fear that he could have an illness we will miss because he cannot tell us he’s in pain. I wonder if he yearns to communicate something more complex than what we understand. And I worry about his future life without the Jukie Whisperer and me.</span><br />
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<span style="font-family: "verdana" , sans-serif;">When these thoughts threaten to overtake me, I think of Jukie’s teaching, and see the boy before me. I laugh with him. As we spin with our eyes closed, walk the greenbelts of Davis, take in the patterns of clouds after a storm, or taste each section of an orange as if it were our first, we are reminded of Jukie’s foremost lesson: We have today – be present.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><br /></span>kate.durenhttp://www.blogger.com/profile/02243645102011600765noreply@blogger.com0