tag:blogger.com,1999:blog-39867230816189980762024-03-13T20:19:48.272-07:00LEE LIFE and LESSONSfamily life - funnies - lessons - Joubert SyndromeSue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.comBlogger302125tag:blogger.com,1999:blog-3986723081618998076.post-11211593469037811202013-03-04T21:51:00.000-08:002013-03-04T21:51:20.137-08:00February FeelingsI've been on a picture-taking frenzy this past month. Partly due to inspiration, partly due to desperation. <br />
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The inspiration part of it is easy to explain. Just <a href="http://youaremywild.wordpress.com/" target="_blank">take a look at this blog</a> if you haven't already and you'll be inspired as well. Amazing pictures from amazing photographers, sure to motivate any parent with any type of camera with any photographic experience to capture their kids on film. SO beautiful. (More sources of inspiration <a href="http://houseofhabit.blogspot.com/" target="_blank">here</a>, <a href="http://denisebovee.net/" target="_blank">here</a>, and <a href="http://www.kristinrogersphotography.com/" target="_blank">here</a>.)<br />
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The desperation comes from a strong awareness the past few weeks that this sweet, sweet time of our lives is temporary. Perhaps it's our pastor's recent sermon series on the coming of the Lord, perhaps it's the death of a close friend's grandmother, perhaps it's hearing news of more and more people our age facing disease, or perhaps it's the gift of our son Marcus, who always reminds me that tomorrow is a question mark and that Tomorrow is going to be sweeter than the best today. In any case, I've felt been more alert to the fact that this wonderful time in our lives can change in an instant and those whom I love most are really not mine at all. They are on loan to me from my Father and by His wonderful grace, I get to share life this side of Heaven with them.<br />
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Of course, there's the daily grime of sin and falling short constantly, but I won't lie. It's been a golden time with the ones I love. I feel the Lord forging my heart even closer to my husband's as He draws us both near to Him, Audrey has shown a soft heart to her family and to Christ...girl loves to talk theology! Marcus is thriving at school and even making real friends, and Derek...oh Derek...we love him, tantrums and all.<br />
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So the shutter's been clicking on my camera a lot these days, desperate to record this time, hoping to look back on them one day and well up with thanksgiving...just as I am right now.<br />
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<tr><td class="tr-caption" style="text-align: center;">Marcus has been learning to Braille at school. He knows how to read and type 10 letters. Amazing!</td></tr>
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0722.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0722.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-42929294940869926922013-01-29T23:15:00.001-08:002013-01-29T23:54:22.567-08:00What We've Been Up To This January <a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0876.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0876.jpg" /></a>
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Pictured: New Year dumplings, Derek actually playing with toys instead holding produce all day, piano lessons, daily bed wrestling, seeing my daughter grow into a young little lady, feeding my pomegranate obsession, Marcus realizing his guitar isn't a real Taylor, before-dinner walks to the park, declaring a family ditch day to Balboa and the southern CA coast.<br />
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Not pictured: the blessings of our old and new church body, screaming for different reasons, new year's goals, me doing yoga (wha?), nagging kids to _____________, asking for forgiveness, spending time with sweet friends, the ER and urgent care, grandma(s), texting my parents and learning they're out of the country, racetracks and cars and marbles, Ephesians, Ray Lamontagne as my soundtrack, Hillsong's "Stronger" on repeat, comforting scaredy man-baby, praying for a friend with cancer and seeing God work miracles, regularly hearing hubby sing and strum.<br />
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It's been a good one. :-)Sue Leehttp://www.blogger.com/profile/09333769233557535020noreply@blogger.com0tag:blogger.com,1999:blog-3986723081618998076.post-74813520072082991542013-01-19T17:24:00.002-08:002013-01-19T22:43:52.288-08:00Wearing a Hat, Walking, and a WeddingNot only was the end of the year full of Christmas festivities, but we were also busy getting ready for Miriam's (Mike's sister) wedding. I've got 20 minutes to finish this blogpost so let's get to it!<br />
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The day of the rehearsal was also the day of Marcus' kindergarten music presentation. Might I say, our son looked quite dapper that day. Here he is walking with his one on one aide, who is AWESOME. Worthy of another post, for sure. <br />
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He was ecstatic to have us there, as you can tell from his above smile. But once he got seated in his place on the stage, his smile turned into, "Woman, whatchya doing putting that thing on my head!?" <br />
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You see, Marcus has sensory issues that make some things harder for him. Certain sounds, lights, and textures are his kryptonite, turning this usually happy and hammy boy into a statue. Hence, the stank face during the whole show while his cute little classmates are smiling and clapping along to Frosty the Snowman and such. <br />
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He looked awfully irritated, but you see, this WAS his performance! Tolerating the Rudolph mask was a big feat for him, so while other parents might have looked at him with "Awwww, that poor boy with special needs. Poor thing...", Mike and I were looking at each other like, "Aw yeah, son! You rock wearing that hat, boy!" We kept ourselves from giving each other high-fives and fist pumps and resorted to just exchanging quiet open-mouthed smiles, so incredibly proud of our mute statue. Well, his aide and I decided maybe we should take it off for his jingle shaking solo, and when we did, our Johann Amadeus Beethoven Brahms came back to life. <br />
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And then, as usual after a period of brief anxiety, he talked for about 40 minutes straight about anything and everything. It's his form of release. So he took us around his classroom and jibber jabbered about his crayons, the numbers on the wall, anything to help him unwind. But what I really know he wanted to exclaim to all the parents eating Christmas cookies was, "I know I know. I'm hot stuff. I rocked that Rudolph hat like no one's business!" <br />
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His teacher was super duper proud of him too, and no parent could ask for a more loving Kindergarten teacher. <br />
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That night, we headed over to the rehearsal where Marcus practiced walking his Auntie down the aisle. <br />
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Uh huh, that's right. Marcus is WALKING! He still needs his walker for long distances and we are still nervous about his balance, but he has put aside the crawling, the hand-holding, and the trailing, especially at home. Best Christmas present ever. <br />
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The next day, Audrey and I headed over to get dolled up while Mike spiffied up the boys at home. <br />
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We are SO happy for Miriam and Eric and were thrilled in tears and in laughter throughout the night, just thinking about God's goodness to this newly formed family. <br />
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All 5 of us participated in the wedding party, with Mike doing a mini solo-concert throughout the night and the rest of us looking pretty. <br />
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It was truly a family affair. So much so that at one point, I thought Mike and I should just pull the pastor aside and renew our vows in honor of our 10 years of marriage. On top of that, during the reception, Mike sang for his sister and Eric the same song he sang to me during our own reception, so really, I felt like I got married all over again.<br />
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With <a href="http://youtu.be/hrQrydJuHD0" target="_blank">all the songs Mike performed during the day</a>, including <a href="http://youtu.be/B-S8-w-aB3g" target="_blank">the sweet one he sang with Marcus</a>, and since it would be a while before we saw some of our dear friends again, it was our version of the Von Trapp family farewell concert. If we all gathered around the mic to sing Edelweiss, it would have been entirely appropriate.<br />
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It was a wonderful two days of watching Marcus wear a hat and walk his beloved Auntie down the aisle. Well, 20 minutes turned into two days and I hope to soon record the rest of our year-end shenanigans. :-)Sue Leehttp://www.blogger.com/profile/09333769233557535020noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-51679546120032830132012-12-28T22:54:00.001-08:002012-12-28T22:55:01.277-08:00Beautiful To MeJoubert Syndrome has brought us in contact with people all over the world. For most of us, the only thing we have in common is the molar tooth sign on the MRI that gave our child the dreaded diagnosis. Other than that, there would be nothing else that would have our lives cross. Mike and I belong to a Facebook group of JS parents around the globe who share their children's latest milestones as well as their concerns, and more often than we'd like, who mourn with each other over the loss of some of these beautiful, precious family members affected by this ugly condition.<br />
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This group of people is the most loving and supportive group I've been associated with outside of family and church. But several times, I've contemplated removing myself from the list because I would often be so burdened by what other families were going through, that I would struggle with anxiety and sadness even if Marcus was doing well. But I'm thankful for remaining in this network of parents even if my activity level is minimal. It's an incredible high to watch videos of the preschooler just learning to crawl, or to see a young man participate in the Special Olympics, or to read a Facebook status saying their child's medication dosage has been lowered after a kidney transplant. And what a privilege it is to pray for the parent and her child who had to spend Christmas in the ER or worry with the mother who is anxious about her son's latest labwork, and plead to God for the nonverbal child who won't stop writhing in some unknown pain.<br />
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A few days ago, a family in Louisville, Kentucky was featured in the NY Times. The father, a high school physics teacher, makes a daily impact on his students not only with his incredible teaching style, but also his sincere love for them. This father, Jeffrey, has a son named Adam who has Joubert Syndrome. After <a href="http://www.nytimes.com/video/2012/12/24/science/100000001947354/wrights-law.html?smid=pl-share" target="_blank">watching the video</a> of their family and seeing Mr. Wright care for his son, I couldn't stop crying for about an hour. Many thoughts fought for my attention at once. Top three: I'm so thankful for Marcus. This family is beautiful. I'm honored that they could represent our small group of ailing, sad, yet triumphant people.<br />
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But the chord that struck the strongest in my heart was that the world gets to see the weight that our hearts carry. Marcus does not suffer at all like Adam. He has come such a long way from his self-injurious behavior that plagued him in his younger years. He is able to talk and play and even walk now. But for me and Mike, a good portion of our trials is watching and praying for others who really are faced with the daily hell of seeing their loved ones suffer so profoundly by the same rare condition my son carries in his genes.<br />
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So now, many more beyond our quaint little group get to peak in and see what Joubert Syndrome is all about. And really, the Wright family show us the beauty in what most of the world would look upon with pity and fear. Jeffrey's undying love for Adam and Adam's equally fierce love for him is so evident, even through the helmet, the wheelchair, the sign language, and the perfectly intelligent and able young man trapped inside his uncontrollably jerking body.<br />
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If you are reading this, <a href="http://www.nytimes.com/video/2012/12/24/science/100000001947354/wrights-law.html?smid=pl-share" target="_blank">please watch the video</a>. You will be amazed and astounded that such a beautiful family exists. I'm honored that they could represent a little group my name belongs to. I'm honored to know so many like them.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-35456225963277659942012-11-21T21:13:00.000-08:002012-11-21T21:13:00.184-08:00Forget-Me-NotsThe turkey is brining in the fridge and the kids are all washed up and in their PJs watching Charlie Brown Thanksgiving with fresh ice cream mustaches on their faces. Audrey checked the clock every 5 minutes until 8 o'clock and now, she and Marcus have been cracking up at the same silly parts, just as they do every year. I don't ever want to buy these episodes on DVD because the fun of catching them on TV for every holiday season is something even I look forward to.<br />
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I'll leave a more profound list of thanksgivings for another time. For now, I've got a few family forget-me-nots that make me smile and make me thankful for even the small and quirky things.<br />
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1. When Audrey sings in the shower, her original songs always sound like a collaboration between Rihanna and Lady Gaga. She'll take three words and create a melody that is loudly repetitive and annoyingly catchy.<br />
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2. Derek's graduated from "_______-sauce" and has added quite a bit to his vocabulary recently. Fruits and vegetables and the ABC song are his new obsessions. When meeting new people or when he wants to join in on a conversation, he might list off different letters of the alphabet or "banana, apple, melon, yellow pepper, or green one."<br />
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3. The ABC song being a major preoccupation lately, that's all Derek wants us to sing for him. Apparently, the lyrics are always on his mind. Yesterday, I gave him a yogurt stick and he was so excited, he exclaimed, "NOW I KNOW MY! NOW I KNOW MY!". It would have been easier to just say, "YAY", but this was obviously a more appropriate interpretation of his emotions at the time.<br />
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4. After talking to other mom friends, there's apparently an OCD phase of development for 2-3 year old boys. One friend told me her son had to hold a spatula wherever he went for a year and a half. When he got into trouble, his parents would say, "Son, you need to obey or we're gonna take your spatula away!" Another friend told me her son MUST hide random knick knacks in his family members' worn socks and even sleep holding these stinky socks stuffed with coins and marbles and such. This news has comforted me and now I don't think it's weird that all Derek wants to do all day is hold armfuls of fruits or vegetables. I bought a yellow bell pepper the other day just for Derek to hold and then I found it in the toy bin at the end of the day.<br />
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5. Marcus has been wiping his mouth after I kiss him lately. I finally asked him why and he said it's because my lips are too big. Now, he makes me pinch my lips together really tight so that the least amount of lip surface area touches his. Sad.<br />
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6. Audrey shares the same lip volume as I do. Mike told me that when he kisses her, he feels like he's kissing another woman.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-49536812409585739582012-11-19T15:51:00.000-08:002012-11-19T16:07:09.297-08:00The Past Month Or SoIt's amazing how differently things look when you look back on them. Although I remember feeling a bit more stressed than usual since the beginning of September, it's nice to look back at pictures and think "You know, it wasn't that bad. In fact, things turned out okay and it was actually fun." All that to say...the Lord sustained us as usual. He is our constant and despite my ups and downs, He never changes. For that, I am so grateful.<br />
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<blockquote class="tr_bq">Every good gift and every perfect gift is from above, coming down from the Father of Lights with whom there is no variation or shadow due to change.<br />
<b>James1:17</b></blockquote><br />
As I look back on all the gifts from above, here's a Big Fat What We've Been Up To Lately:<br />
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Getting to know Derek better during our mornings alone.<br />
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So far, I've learned that he is Top Model material<br />
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And that he must always have a beverage on hand, just like Daddy and Auj, the reigning king and queen of thirst.<br />
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Getting some fresh air during Audrey's soccer practices.<br />
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Seeing Marcus grow so much as a kindergartner.<br />
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We had parent conferences recently and were so happy to hear that the kids have been a blessing to their teachers. Academically, they are doing well, but we were so thankful to hear that they are both doing well socially too. I might have cried a little when we heard that Marcus has an "entourage" at school who he has snack with and plays games with. There are a few kids in particular who have an affinity for him and this just makes our hearts overflow with thanks to the Lord.<br />
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The kids are liking school and LOVE their teachers, but we might have ditched school one day just to be together.<br />
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We did lots of soccer game watching.<br />
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Correction: I did a lot of babysitting, breaking up fights, and shoving the boys with treats so as to avoid tantrums on the sidelines.<br />
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Then came the fall harvesting. Now, I think the only reason Mike's mom comes over is to stock up on her persimmons. J/K. Kind of.<br />
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We did some bridal showering for Miriam, Mike's sister, who is getting married next month! Woohoo!<br />
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Derek turned 2 and we had an impromptu little birthday celebration for him at home.<br />
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This year's Halloween was probably the most fun ever.<br />
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I'm not sure if it was because the kids were older or because I was reliving my childhood through them, but I remember thinking, "This is REALLY fun. I hope my kids remember this."<br />
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But perhaps the only person that had more fun than me was CA Grandma. Was she doing a rain dance in the middle of the pumpkin patch with her favorite grandchild? Yup. Uh huh.<br />
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Trick or Treating in our neighborhood was the highlight for me.<br />
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As soon as we got Derek to stop screaming in unbridled excitement, we headed out and collected our loot while falling more in love with our little community.<br />
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Note to self: always buy glow sticks for the after-party. They were a huge hit.<br />
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After Halloween, we did a little nature exploring.<br />
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And again with some friends.<br />
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Derek's been bonding with Cousin Norah.<br />
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And hopefully bonding with his Mama too.<br />
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And finally, we've been re-acquanting ourselves with our backyard after the late September heat finally bowed out and the crisp fall weather set in.<br />
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Thanksgiving is this week, which is the perfect frame in which to set these snapshots of the past month or two.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0420-1.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0420-1.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-70813678036061786542012-10-20T23:53:00.000-07:002012-10-21T00:00:13.544-07:00BackfireFor the past month or two, we've set aside one day a week as a "no technology" day for the kids. I had gloriously envisioned that as a result, my kids would grow a distaste for television and video games and would spontaneously teach themselves how to whittle, crochet blankets for the needy, and spend hours collaboratively working on an original musical for which they would bedazzle their own costumes and then enthusiastically perform it for me and Mike.<br />
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For the most part, these days were going pretty well. As long as I kept them engaged in creative activities, they really didn't need screen time at all. Until last week...<br />
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It was our designated "no tech" day. Derek had woken up from an unsatisfying nap which meant the rest of the day would be OFF. Mr. Mark (Marcus' PT) was over our house and for some reason, decided to bring a circus tent full of stuff for Marcus to work on. I don't know how he fit it all in his car, but he brought over 3 exercise balls, 8 step stools, a bag of balls, musical instruments, gooey dough, frisbees, stepping squares, exercise bands, and a parachute to top it off. He also decided that he would use Marcus' drums to motivate him to work extra hard. It must have all been too much for Derek to soak in because while he was ecstatic to join the Cirque du Soleil fun that day, it also sent him into an Incredible Hulk frenzy every 30 seconds or whenever he didn't get what he wanted. Had he turned green and ripped off his shirt, I wouldn't have been surprised. So while trying to get Audrey settled home after school, talking with Mr. Mark about what to work on with Marcus, and trying to tame Derek's tantrums all at the same time, it was getting crazy up in here.<br />
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After Mr. Mark left, the boys continued the raucous by fighting (wrestling and screaming and crying) over every little speck of dust. Separating them was futile because there seemed to be a magnetic force drawing them together to duke it out. They battled over the drums, the blocks, and even had a dueling duet on the piano when all of a sudden I heard the piano lid fall on all four hands and saw them screaming in pain, each blaming the other for the cacophony.<br />
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I then decided that baking together would calm everyone down and it did for everyone except me. Derek had decided that since I told him not to touch the baking mix, he would obey my wishes and instead, blow it everywhere. Marcus, liking where this was going, thought he would join in. Audrey, my helpful little one, dropped an egg on the floor on accident and although yes, flour everywhere and a dropped egg are no big deal, I was on edge by now and more so because I had been suffering some mysterious allergic reaction for the past day and my face felt like the surface area of the sun, my eyes were swollen and inflamed, and I felt like there were a bunch of microscopic bugs crawling around inside my head and ears.<br />
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Apparently, baking was hard work for THEM because after I finally got the pumpkin bread in the oven, they were complaining of horrifying hunger. I set them at the table to wait patiently for a snack. While they groaned of starvation, Derek dropped Marcus' pencil box, scattering all of his beloved school supplies across the floor and along with them, a generous dusting of pencil shavings that spilled out of his sharpener. This spiraled Marcus into a depression too deep for words because all he could do was put his face in his arms and moan. I was trying to peel an apple and console him at the same time, but then he also complained of some discomfort in his butt that needed my immediate attention.<br />
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I came to Marcus' aid and Derek had already fled the scene, but made his whereabouts known because he was in the other room, frustrated that he couldn't find all the pieces to his alphabet puzzle and yelling "WHERE C? WHERE C? WHERE C" in a loud, rhythmic manner. Perfect background noise to trying to rescue my other son from depression and butt pain while sitting on pencil shavings.<br />
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I somehow revived everyone's will to live and had them coloring at the table while I prepared dinner. Derek decided that throwing the crayons would be a lot more fun and by that time, I was all for it too, as long as it made him happy. I should have known though, that after a few minutes of "good, they're finally quiet", that something was up because Derek had been coloring all over our white walls and to Marcus' detriment, all over the top of his drums.<br />
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While I was pretty upset about the walls, Marcus was even more distraught. To top off the drama of the day, he prostrated himself on the floor and wailed, "It's ruined! It's ruined! My drum set is ruined! Waaaahaaahaaaa!"<br />
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It was one of those "REALLY?!" moments and when I texted my sister what was happening, she OMGed my story and told me that her kids were quietly watching TV.<br />
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Lessons learned:<br />
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1. When you notice there is madness in your house, and your kids don't want to quietly whittle, give them a snack in front of the TV.<br />
2. When you want so bad to scratch out your eyes and there are red scaly patches on your face and you are running low on patience, turn on a DVD.<br />
3. When your children have lost their will to live, pray with them, encourage them, and then give them a lollipop and YouTube.<br />
4. When you need to cook dinner and your children are majorly lacking self-control and are succumbing to emotional rage, give them some discipline, share the Good News of Jesus, and send them off with a Wii remote.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com5tag:blogger.com,1999:blog-3986723081618998076.post-8415986662093248932012-10-04T23:02:00.000-07:002012-10-04T23:05:16.455-07:00Alive and KickingI realize I did some spiritual coasting this summer. Riding the waves of good sermons and enjoying the calm waters of uneventful days, I think I let my heart settle into the California mindset of hanging loose and enjoying the good weather in this season of life.<br />
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But at the tail end of summer, right before the kids started school, a swell came in from the horizon. I saw Marcus crawling around one day, bumping his head on different things. It wasn't anything new, but this time, he was obviously distraught, burying his head in his arms and crying out, "Mommy, It's so hard. I don't know how to see." <br />
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I couldn't sleep that night. We are on high alert whenever Marcus indicates anything regarding his vision, so I cried and prayed all night, begging God to guard what little vision Marcus has, even though the doctors say his retinal degeneration is inevitable. I feared it was the beginning of my son losing his eyesight, adding another layer of pain to the challenges he already faces.<br />
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As He usually does in times of despair, the Lord led me to Psalm 34, drawing my attention specifically to verses 19-20.<br />
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Many are the afflictions of the righteous; but the Lord delivers him out of them all.<br />
He keeps all his bones; not one of them is broken.</blockquote>
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When I read this passage years ago when Marcus was first diagnosed, I didn't have faith that God would follow through with this promise...to deliver us from our afflictions. I thought the only way God would do that was by healing Marcus from his condition. But this time, I read it with a clearer understanding. God doesn't promise to take away our afflictions, but He promises to deliver us from them by protecting us in the midst of them. When I read it this time, I felt my eyes were opened to the truth that the way God shows us His love isn't necessarily by taking AWAY our pain, but by loving us IN our pain. Not one of my bones will be broken in hardship, He says. <br />
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By God's grace, I noticed my heart had grown a little from a few years back. I woke up from that restless night's sleep with thanksgiving, that God would give me a spiritual love-pinch, a poke in my rib to make sure I was alive and not just a dead weight coasting along. After probing Marcus more about it the next morning, he clarified that his vision wasn't changing, but sometimes it bothered him more than usual and that sometimes it was "hard to see". I asked him if he was sad or okay and he assured me that he was alright. (By the way, we are SO thankful that Marcus can even verbally communicate all this. It is a huge deal and we in no way take this for granted.) So yes, I was thankful that God would use this vision episode not as a code red for Marcus, but as a spiritual defibrillator for me, giving me a good hearty slap in the toosh to make sure I wasn't sleeping my way through the path of following Christ.<br />
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Since then, He's allowed for more opportunities for our faith to be stretched. For example, Marcus took a fall at school recently, cried on a different day because he was scared, and today he told his aide at school that he never ever wants to go back to kindergarten again. But through the various hurdles, He's also given us some precious truths to hold onto.<br />
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Matthew 5:3<br />
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<blockquote class="tr_bq">
<u>Blessed</u> are the <u>poor in spirit</u>, for theirs is the kingdom of heaven.</blockquote>
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1 Peter 1:6-7<br />
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<blockquote class="tr_bq">
In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, that the proof of your faith, being <u>more precious than gold</u> which is perishable, even though tested by fire, may be found to <u>result in praise and glory and honor</u> at the <u>revelation of Jesus Christ</u></blockquote>
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I could go into a long boring commentary on how these passages have taken a hold of me, but in summary: I love how different afflictions big and small can bring my heart to life by drawing from the Words of Life. They remind me that though it can be comfortable to just happily float along day by day, there is far more joy in desperately clinging onto Him who helps me persevere toward a great and glorious Day.<br />
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I've said it many times before, but goodness, do I thank God for our dear Marcus. How I greatly rejoice. My heart is alive and well.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0151-2.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0151-2.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-62464072235841719602012-09-21T14:10:00.000-07:002012-09-21T14:10:22.620-07:00Forget-Me-NotsTidbits of family life I don't want to forget:<br />
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1. Sometimes there's a lot of screaming and yelling going on here. Derek screams when he's happy and screams when he's mad, so I always feel bad for our neighbors, who probably think we've got issues. One day, our windows were open and I could hear our neighbor pick fruit from his tree. Derek happened to be in a good mood and started giggling, so I encouraged it more by doing some silly thing to keep the happiness going. I wanted Bob to hear that yes, my children are happy at times. I then raised it up a notch by tickling him and then making my own laugh real loud on purpose. But then it got a weird because my laugh became a little too forced and I was afraid that Bob probably knew that I was kind of fake-laughing and that he thought I was a psycho-mom. So I was kind of embarrassed to see him again, but he told me recently that he really doesn't hear a peep from us. Whew!<br />
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2. Derek's vocabulary is expanding but not as much as he would like. When the rest of us are talking about something and he wants to join in, he'll just say "applesauce" because it's the biggest word he knows and thinks he's part of the conversation. When he doesn't know what a word is, he'll substitute it with "sauce". He says, "I want this sauce" about 15 times a day. When he wants to make a word longer, he'll add "sauce" to it, which cracks up his brother. Marcus' favorites are "car-sauce" or "block-sauce".<br />
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3. Marcus and Derek's relationship is complicated. During their trip to Maryland, he confided in Mike that he doesn't really like Derek. A few weeks ago, I asked him about this and he clarified that he loves Derek, but sometimes doesn't like him, like when he's screaming and crying. (I totally get it, son.) Although they bicker and fight, I do see glimpses of genuine love, like when they're chasing each other around the house while belly laughing, or when they're wrestling on the bed, or when Derek looks to him for consolation when he's in trouble.<br />
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One day, during Derek's 5 o' clock meltdown, he was crying hysterically waiting for dinner at the table. After a couple minutes I noticed that Marcus was real quiet and when I looked at him, he was making a funny face and probably was doing it for a while. Sweet brother was trying to console him by making him laugh.<br />
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On a different day, Derek woke up from a nap crying and in a terrible mood. Immediately, Marcus went over to the piano to play him the Lullaby Song. Funny faces and music must be his love language.<br />
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4. Audrey asked me recently, "Mom, is there still manna
around?" When I said there wasn't, she responded with a whimpering,
"Aaaawwwww!! I wanted to taste some!!" Go figure...God's children
complain when he gives them manna and some complain when He doesn't.<br />
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Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-56678987477645412602012-09-10T00:03:00.000-07:002012-09-11T13:19:18.204-07:00Thoughts On The First DayI dreaded the first day of school. With the slower stride of summer and getting to enjoy being with the monkeys doing everything and nothing together, I didn't feel like stepping into the hustling bustling pace of the fall. Waking up early, packing lunches and backpacks, nagging them to get out of bed or finish homework...I just wasn't looking forward to it.<br />
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But what bummed me out the most was the simple fact that these babies of mine were growing up...again. Marcus is now a Kindergartner without the comfort of a small special needs class setting. Instead, he's in a large general ed class full of "typical" peers. And Audrey, who doesn't seem to ever stop growing, is at a different school than last year and has to make a whole new set of friends.<br />
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It didn't help that after our bedtime prayers the night before, she erupted in tears accompanied by a few rounds of "I'm scared." And it was then that I heavily doubted the "I love you" I wrote on blue ink on the kids' left hands were going to bring them any comfort.<br />
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The Lord knew what this mama heart needed because I had set a date to visit with my friend Stacey after the first morning's drop-off. The kids parted ways wonderfully, but my eyes were sore from damming up the tears all morning. <br />
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So it was a wonderful blessing to share our mama burdens to each other and pray for our children while letting the tears flow freely. What I realized during my time with her was that it's not just the thought of seeing our kids go to school and have to go through good and bad experiences on their own that saddens me, but also the fact that these babies are growing up quickly and the sand in the hourglass is falling faster than I had expected. And boy, does a mama feel vulnerable knowing that our babies are out there in world on their own, even if it's only for a few hours a day.<br />
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Thankfully, praying with my friend and entrusting our Father with our kids that morning calmed my heart tremendously and reminded me that He sure does love them more than I ever could. And because He loves me too, I can go to Him to tend to my heart when it's bruised by the sometimes light but sometimes brutal lessons of motherhood.<br />
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Upon picking them up, I knew that I'd be able to tell from their first facial expressions, what their first day was like. So since I saw this:<br />
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And this:<br />
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I let out a sigh of relief and thanked Him for being gentle with us all on our first day. Not all of them will be as smooth and happy for sure, but at least we got off to a great start (<a href="http://mrssuelee.blogspot.com/2010/09/kindergarten-at-last.html">unlike Audrey's first ever school experience</a>).<br />
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That day happened to be my birthday, so it led to a little more introspection than usual. I thought about how blessed I am at this stage of my life. <br />
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Not only has He met my every need, but He is using the precious members of my family to reveal in me a greater need I have of Him.<br />
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My husband and my munchkins are gracious gifts I don't deserve. <br />
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They make me laugh, they make me cry, they energize me and they expend all my energy at the same time. <br />
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But what I'm most thankful for is that God uses them to make me long for Him and depend on Him more because they expose all my weaknesses and all my flaws. They don't know it, but they're teaching me so much. And as I'm now getting ready for a new week of school ahead, this mama's heart is nice and full.<br />
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<br />Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com5tag:blogger.com,1999:blog-3986723081618998076.post-59681329785889516052012-08-30T22:33:00.000-07:002012-08-30T22:45:22.843-07:00Two ThingsTwo unrelated things I've been thankful for this week. Worthy of two separate posts, but I'm jamming them together into one.<br />
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First, super thankful for our weekend getaway to celebrate our 10th anniversary. We have the best sisters and brothers-in-law who love us and our kids so we can get away and do things like this. It wasn't easy for them, so THANK YOU to our family!<br />
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Los Angeles was the destination this year and we loved that the hour drive led us to somewhere so NOT where we live, with yummy non-chain restaurants and a chance to be just us. Lesson learned: we will always tell our future hotels that we are away to celebrate our anniversary, because this time, we got a sweet gift:<br />
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In my dreams, we have a talented photographer following us around, snapping candid pictures of us throughout the day so that we can get the memories on film. But unfortunately, that's not the case and when we stop to ask a stranger to snap a photo of us, more likely than not, it turns out like this:<br />
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So in order for my memory card to not be entirely comprised of food and Mike eating the food, we had to get creative. Self-timer, collages, and mirrors are now my friends.<br />
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But I still took lots of pictures of food. #notdinochicken<br />
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(Our favorite restaurant, which we have no photo of, was Obika Mozzarella Bar in Century City.)<br />
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A last-minute decision to see Diana Krall at the Hollywood Bowl was a definite highlight.<br />
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One funny: I gobbled my Subway sandwich during intermission and it was a pretty messy sandwich, so I made sure to leave the last napkin for Mike so that he could use it when he ate his. The dilemma was that I also wanted to eat my juicy peach. So in pure selflessness, I decided to eat my juicy peach in a way that no juice would trickle down my hand. That way, I wouldn't need the last napkin. Apparently, the manner in which I ate my juicy peach sounded like I was loudly slurping brains out of an animal. My loving husband waited as patiently as he could until I was 3/4 done and he could take it no longer. He turned to me with a loud, "REALLY!?". Then we busted out laughing because seriously, I had no idea I was annoyingly slurping brains. I thought I was being the good wife by leaving him the last napkin. "PLEASE! By all means, use the napkin, babe!" <br />
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Then, I saw the people in front of us turn around. Either they wanted to see what we were laughing about, or they wanted to give Mike a high-five for getting me to stop my sound effects. Whatever. I was being the noble wife.<br />
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But in all seriousness, I love my husband. I love how he loves me. I love God and I thank Him for sustaining and growing our sin-wrought marriage the past 10 years. I love that Mike and I can enjoy these chances to have fun and celebrate and enjoy each other even while shouldering some hefty burdens. I love that my husband and I can cleave to one another here while remembering that it's actually temporary, and our relationship will only to be sweeter in Heaven.<br />
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Which brings me to the second thing:<br />
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We started attending a new church a few months ago. Among the many blessings have been two mentor couples in our young marrieds group. They are older and in God's providence, both have adult sons with special needs. And by His loving grace, they both have hearts to minister to me and Mike. It's something we've longed for. Not that we haven't been ministered to by others before. In fact, we have been greatly blessed by so many in our lives who have blessed us and taught us and loved us in our special needs journey. But there's something so unique about having someone who completely understands your pain because they've lived it themselves in even more profound ways.<br />
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So when they tell us that God is good and that He does good even when we can't understand his purpose and plan, it is like gold to us. With 30-40 years of marriage under their belts and story after story of God's redeeming grace being sufficient in their tremendous suffering, we see the Word of God and the grace of Christ so beautifully illustrated in their lives. Seeing them gives us tremendous hope that God is with us in our trials just as He has been with them.<br />
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On the Sunday that Mike and Marcus left for NIH, I happened to be sitting alone at church, surrounded by a sea of people I didn't know and who didn't know me. I missed my previous church body tremendously that day, knowing that if I was there, many people would have known what was on my heart and perhaps they would have encouraged me. After a very sweet service, I was exiting the building by myself when one of the mentor couples (Stan & Mary) ushered me to the side. They sandwiched me and told me they had been praying for Mike and Marcus' trip, which had me erupt in tears. I didn't have to say a word before Mary sweetly said, "I understand, Sue. I understand your mother's heart." Then they put their arms around me and prayed with their own tears over Marcus. They knew intimately about the testing that Marcus would endure the week ahead because they watched their own son undergo the same (and more) difficult tests for years and years and with very little answers. Needless to say, their love and prayers for us have been a unique and sweet way that God has breathed life into our souls.<br />
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So yes, we get to move up to the 10-year notch on our marriage belt. What a privilege it will be if we get to do this for 30 or 40 more and be a Stan and Mary to another young couple in similar shoes. God is good. He does good even if we can't see it at times. I'm thankful that we can understand that a little better at this season in our marriage.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com4tag:blogger.com,1999:blog-3986723081618998076.post-46577609711042559392012-08-22T21:57:00.000-07:002012-08-22T22:15:53.169-07:00Family Summer Vacay 2012We took a family vacation to San Diego a few weeks ago with my sister's family and our parents who flew in from Hawaii. Like always, I took a bajillion photos. Just wanted to post some of my faves.<br />
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I love my family, our beautiful state with THE best weather, date nights, hitting the beach or bay everyday, seeing my kids smile because they love life and LOVE vacation, watching Mike and Auj aqua-bond, spending extended time with my parents, and much more.<br />
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Vacation...another means of grace to me and my fam. Thankful.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-29040492902986903272012-08-20T22:32:00.000-07:002012-08-20T22:32:06.720-07:00Walking, Dancing, GigglingEven though Marcus isn't fully walking independently yet, the journey getting there has been awesome. We love this kid so much.<br />
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<br />Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-83046532134359394022012-08-01T23:36:00.000-07:002012-08-02T00:04:10.823-07:00What We've Been Up To Lately"Just Dance"ing, and just sweating up a storm.<br />
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Leaving Derek's uneaten breakfast on the kitchen floor hoping he'll come by and eat it while he plays. I should just leave a bowl of water out for him too.<br />
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Discovering that we have a huge hydrangea plant in the side yard and using them to brighten up the home. <br />
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Wiping the drool off our faces while counting the 100+ baby avocados growing on the tree.<br />
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Still playing with alphabet puzzle pieces I bought for Audrey from the Target dollar bin when she was a toddler. And we still haven't lost one! Miracle. Probably the best dollar I ever spent on the kids.<br />
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Leaving Big D in just his diaper because I love seeing the soft buttery curves of his rock-hard baby muscles.<br />
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Totally milking the backyard this summer<br />
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I love how Auj had to change into her bathing suit so she could dip her feet in the baby pool.<br />
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The front patio is getting some good action lately too<br />
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Collaborating on chalk art<br />
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Crying about having to collaborate<br />
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Doing push-ups simultaneously to fight off the chalk art blues<br />
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Pouring himself into his work by way of strained eyebrows<br />
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Needing a bath after every chalk session<br />
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Wrapping dusty little chalked up arms around Mama<br />
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Taking the older kids on long after-dinner rides along the bike path behind our house<br />
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Cheering on the Champ because he's really started to steer better and pedal harder<br />
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Admiring sunsets and my daughter's love of outdoor sweating<br />
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Trekking up to the bridge to catch trains pass by underneath<br />
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Making the return trip with full moons guiding us back home<br />
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Celebrating our 10th wedding anniversary!!!<br />
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Watching my not-so-new husband enjoy delicious food while recalling the most memorable times of our marriage thus far.<br />
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There's more celebrating to come as we go on a weekend getaway in a few weeks. Can't wait to have this guy to myself for a couple days.<br />
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Lastly, witnessing the kids' first duet. It cracks me up because this idea was 85% their doing with 15% help and guidance from me. Enjoy!<br />
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<br />Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-10796298515506715772012-07-25T22:57:00.000-07:002012-07-25T23:17:39.364-07:00A Unique Privilege"I would do it again in a heartbeat."<br />
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It's what people say after a great vacation or an awesome dinner. However, you don't typically hear it after someone's trekked across the country to see his child be poked and prodded by doctors for four days straight. But it's what my husband said towards the end of his trip with Marcus to NIH (National Institute of Health in Maryland) and it's what we've heard so many parents say of the same experience.<br />
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(all photos taken by Mike on his phone)<br />
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Last week, Marcus participated in a medical study for Joubert Syndrome and other similar syndromes associated with kidney and liver diseases. It had been going on for a few years and we were fortunate enough to take a spot during the very last week of the study. We had many fears while preparing him for the trip. Will Marcus be okay on the plane or will his sensory issues keep him miserable the whole ride there? Will he be anxious and fearful at each appointment? (He had several a day.) Will MIke be okay going to all the appointments on his own? Will we hear discouraging news after all the testing?<br />
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We asked some friends to pray for us and the Lord bountifully answered. He did so well during his travels and even said that he wanted to ride a plane again, despite the loud noises. <br />
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He was also brave beyond his years at each appointment and our boy, who freaks out at band-aids, became Super Marcus when he didn't flinch while probes were wrapped around his head during the EEG.<br />
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There were some difficult times though. Three people had to pin him down to collect 12 vials of blood, and dilating his eyes was also very scary for him and very stretching for Mike.<br />
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But by God's providence, our church had the kids memorizing Proverbs 18:10 a few weeks prior to the trip. "The name of the Lord is a strong tower. The righteous man runs into it and his safe." We had been talking quite a bit about the fact that God is a refuge for us; a safe place. And as he recited it with Daddy during the difficult times, I think it was an encouragement to them both, and to us at home, who were praying for them and dying to be with them.<br />
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At the end of the week, the head doctor of the study showed Mike and Marcus the results of each test and we were so thankful to hear that besides his retinal degeneration (which we had already known about), his health was stellar. She even said that although there still is a chance he could develop kidney or liver issues down the road, based on his current tests results, it is less likely that would be in his future. We were beyond thankful to hear that news, knowing how much they had to go through the entire week.<br />
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After Mike came home, I asked him why, even through the tiring travels and the arduous appointments, he would relive the experience again. Of course, he mentioned that the good results was a major factor, but he also added a few other reasons:<br />
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1. Meeting the people.<br />
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Not only the amazing doctors and staff who genuinely cared about the children and who actually knew what Joubert Syndrome was (versus the local doctors who often Google JS to find out information about it), but also meeting the other two kids and their families who were there for the study at the same time.<br />
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Mike repeatedly said that the trip was so worth meeting Mackenzie, Andrew, and their amazing parents. I'm sure they now all share a very special bond and we hope to, one day, meet again. (Please read about <a href="http://macksmom14.blogspot.com/2012/07/national-institute-of-health-joubert.html" target="_blank">Mackenzie and her family's experience on her blog!</a> Hope you don't mind me sharing it, Whitney!)<br />
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2. Seeing the world of rare disease beyond Joubert Syndrome.<br />
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At the hospital and at the Children's Inn, where they stayed, Mike met and saw many other children with rare conditions. Some with physical deformities never seen before and some who were obviously very ill. In his words (which I'm paraphrasing), "I saw all those children and I loved them all. I would want to adopt them if they didn't have parents of their own. The world would see them and see something wrong, but they are all perfect. And yet, in all these rare diseases, I saw a visual picture of the effects of the fall on this world."<br />
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We believe that Marcus is fearfully and wonderfully made. However, there is also the reality that God will one day renew our bodies to be whole again. And to see so many others struggle with so many other challenges unknown to us, opened our eyes to the fact that much suffering exists. Not all patients go home with good news like us. So even though we are daily faced with Joubert Syndrome in our home, there exists a world at large that is longing to be healed of sickness, relieved from pain, delivered from sadness.<br />
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But interestingly enough, sadness isn't really what Mike saw there. He said that so many of the children and their parents were smiling and happy in spite of the reasons why they were there. And so it dawned on us that being a tiny part of this world of disease and disability is a unique privilege we never thought to ask for. At least, that's our perspective for now. It's heart-breaking and exponentially more for those who carry severe pain and even loss of their loved ones. But for us, for now, we consider it an honor to share a small part of this unique experience.with others.<br />
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To learn to recognize the gift that is our health, to entrust our Heavenly Father with our most beloved children, to be stretched and reminded that God's grace extends past our weaknesses, and to long for Heaven...that is the privilege for us. We are so blessed to have Marcus, who has introduced us to a whole world we would never have known otherwise.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=photo15.jpg" target="_blank"><img alt="Photobucket" border="0" height="400" src="http://i3.photobucket.com/albums/y76/mrssuelee/photo15.jpg" width="400" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-67489797604043504462012-07-18T22:16:00.000-07:002012-07-18T22:17:02.664-07:00What We've Been Up To LatelyTonight, our family is separated and sleeping along both the Pacific and Atlantic coasts. Joubert Syndrome has something to do with it and I'll write more about it in another post, but for now, here's what we've been up to this summer so far:<br />
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Marcus' birthday always kicks off the party season in our household and by the time we celebrate Auj, Mike, and our union's birthdays, we know summer is at full throttle. <br />
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I love that we get to gather our family and friends in the backyard, fill up a table with good eats, and watch our loved ones relax and enjoy.<br />
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Audrey decorated her and her Daddy's cake and I hope Daddy will remain her main man for a long long looooong time.<br />
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I love how he's looking at her in this picture. He loves her so. They share they same face, same soccer legs, same soul.<br />
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I love how they get to blow candles together every year. I also love what I'm doing in this picture. Just being happy, I guess?<br />
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And what do you do when you take 25 consecutive family pictures and there isn't one where everyone's looking at the camera? Just shamelessly pick the one you look best in. So, voilà .<br />
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The night when Audrey was born, we heard distant fireworks and it didn't register with me that our whole nation would be at full party mode every time we celebrated her birthday. And 7 years later, we saw fireworks together as a family for the first time (minus Big D). Even Marcus' sensory difficulties didn't stop us from enjoying them and although he initially complained that the noise was too "popcorny", they remained the highlight of the day's festivities.<br />
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Besides partying, we've been beaching.<br />
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The Champ is virtually BFF with the ocean now.<br />
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And Derek's fierce flash of underbite is code for "I dig this, Mama."<br />
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Audrey took a 4-week drawing class which inspired an after-dinner still life session.<br />
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I'd like to say that Auj was shooting for Realism and Marcus aimed at Impressionism but landed at Surrealism.<br />
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Summer fun means end-of-day baths and sometimes Jewish baths make you cleaner. Well maybe not cleaner, but they're certainly more fun.<br />
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And once your baby brother leaves you alone in the bath with no one to giggle with, what do you do? You have a balance-the-bowl-on-your-head contest against yourself.<br />
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Here's to a slow, restful, fun, sometimes naked summer.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0537-1.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0537-1.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com1tag:blogger.com,1999:blog-3986723081618998076.post-61202540104053144122012-07-03T23:42:00.003-07:002012-07-03T23:53:31.447-07:00What We've Been Up To LatelySo very thankful for everyone's encouragement after the last post. Your comments and emails were so appreciated. Spent some time with girlfriends last night too and I'm reminded that all of us parents are in this together and we are sustained by the sufficient grace of God.<br />
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Warning: a majillion pics coming your way in a catch-up post of what we've been up to lately.<br />
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Father's Day-ing<br />
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While feasting on CA Grandma's cooking<br />
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And prayers for the Daddy we so appreciate and love<br />
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Making Daddy build a giant marble track for the kids<br />
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Getting to see my mom after the passing of my grandfather<br />
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Loving seeing her enjoy the 5 grandkids<br />
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Watching the Champ get familiar with his new big-boy bike.<br />
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Hoping to get his own set of wheels one day<br />
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Cooling off in the backyard<br />
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Getting blasted with water in the nostrils<br />
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Channeling <a href="http://abcnews.go.com/meta/search/imageDetail?format=plain&source=http://abcnews.go.com/images/US/ap_scream_auction_jp_120502" target="_blank">Edvard Munch</a><br />
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Needing to sulk a little bit because having too much fun isn't always good<br />
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But the boys don't care<br />
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So she's back to smiles and again<br />
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Spending restful afternoons outside<br />
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With geeky books<br />
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and sweet girls<br />
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Using the natural and artificial breezes to propel pinwheels<br />
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And watching them spin for an hour and a half<br />
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Starting a series I hope shes loves (even though I never read it when I was young because I was busy reading Stephen King and writing weekly letters to NKOTB)<br />
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Not smiling after a nap<br />
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(maybe because his leg was stuck and Mommy was just taking pictures of it)<br />
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Amazing Grace-ing on the keys <br />
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Going out for our first summer morning at the beach<br />
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Synchronized sandcastle-building<br />
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Gram-glamming<br />
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Water-fetching<br />
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Beach-dancing<br />
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Comforting scaredy man-baby<br />
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Asking Daddy to bring him closer to the shore<br />
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Shell-searching<br />
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Braving the waves<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0294-3.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0294-3.jpg" /></a><br />
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although a little scared<br />
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but forging ahead<br />
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and being glad he did<br />
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Crazy bursting with joy over Lover Boy<br />
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Getting comfortable with the ocean<br />
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Acting like he owns California although his shirt says otherwise<br />
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Ending the day with great memories and sandy butt-cracks<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0348-3.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0348-3.jpg" /></a><br />
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Getting ready for more birthdays and celebrations ahead<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0150-3.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0150-3.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-65705939975387795282012-06-28T23:29:00.000-07:002012-06-28T23:29:14.027-07:00We Will Always Be With The LordIt's been a tough week of parenting. I had one of those evenings this week where I was crying while making dinner just because I felt so stretched the entire day, and the only comforting thing to do was drop tears on boiled noodles. My rockstar husband noticed my seams were coming undone so he told me to drop the cooking, leave the house, and go have dinner by myself. I thank God for Mike, who often prescribes me exactly what I need.<br />
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While driving out, I wondered why it's been so hard for me. I have a loving husband who comes home by 4:30 on workdays and helps out amazingly with the kids. I have three precious, beautiful children, and by golly, I now have a garage and a backyard! How much easier could life with three children be? Besides that, I know several other moms with multiple kids with disabilities who are medically fragile, in and out of the hospital, or severely affected, and maybe even with no typical children. There are also mothers who would do anything to have a crazy day with a child they've lost or with a child who was never born at all. Thinking about this, I wanted to punch myself in the gut.<br />
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The truth is, in spite of all the blessings, and although I really do have it good, it's still a difficult season for me. I could try to list it all out, but basically, one of the main reasons why I feel so stretched is because Marcus is incredibly dependent on me for virtually every need. And because of that, he has much anxiety when I'm not close by. So, getting food prepared, taking care of bills, or even going to the bathroom can be very tricky and anxiety-inducing for me, because I know that Marcus could end up being upset somehow. Throw in a side of Derek's tantrums or a brotherly brawl, and it's another beautiful mess.<br />
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But what puts me over the top is that I know Marcus doesn't want to need me as much as he does. "It's so hard for me," he said randomly on the way home from Audrey's soccer practice. "It's so hard for me to play soccer and walk on the thick grass." <br />
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We had been watching the girls run on the field and Marcus wanted to run with them so badly, but his walker was hard to maneuver on the grass and each step was accompanied by a loud sigh because it was so belabored. Yet he saw Derek walk around just fine and realized, "Derek's walking regular." And this was just an hour after the kids were chasing each other around the house and Marcus, having to crawl to catch up with them, decided to give up and with a frustrated tone, said, "They're going too fast. (sigh) I want to just lay down and rest."<br />
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As hard as it is for me to care for the kids with Marcus' needs, it's exponentially harder for Marcus himself. And that's what daily tears at my heart.<br />
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I thought about all this as I drove out of the house and once I got to the restaurant, the host seated me at my table for one and I opened my Bible to this:<br />
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For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, <u>and so we will always be with the Lord</u>. Therefore encourage one another with these words.<br />
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1 Thessalonians 4:16-18</blockquote>
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Immediate comfort, renewed hope and excitement for my future reality...that's what the Lord pumped into my spiritual IV through this passage. "We will always be with the Lord." Not that He isn't with us now, but the thought of physically being with Him, being gathered up to be with Him forever, that is a picture I don't want to let go of.<br />
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I came home so rejuvenated, smiling as I gave Mike a hug and thanking him for my night alone. I also was excited to tell the kids about this in the morning and to tell Marcus about how things won't be so hard for him later when he's with the Lord. The kids were pretty stoked that we would be taken up to the clouds to be with God, who was preparing a room for us. Marcus obviously loved that the trumpet of God would announce His arrival and I think he was intrigued that he would one day be able to run and jump with ease.<br />
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"But Mommy," he said with a pause. "Will you be there with me?"<br />
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"I will," I answered. And I just left it at that. Because if heaven for Marcus means that I will be there to help him and care for him so that none of his needs or desires will be unmet, then he has no idea how incredible it will really be. And I can't wait to see the look on his face when he realizes that heaven will be so much more than me being there.<br />
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His Creator, the One who knows what every cell is or isn't doing in his body, the One who holds the universe in His hand, the One who ransomed his life with the sacrifice of His perfect Son, He will be there to take care of him...forever.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0105-3.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0105-3.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com7tag:blogger.com,1999:blog-3986723081618998076.post-72535725359438308962012-06-26T23:46:00.000-07:002012-06-26T23:46:15.743-07:00The Hills Were AliveMy sister always tells me that my kids love life. It's so true. If we hype up even a mundane activity, we can get them easily excited. I could say, "Kids! Guess what! We are gonna get in the car to buy a dozen eggs at the market!" And then if I abruptly inhale as if to catch my breath in shock, then the three of them (especially Marcus) would erupt in "Yay! We're going to buy eggs at the market! Yes! Hooray!"<br />
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They really do love to live. They fight with fervor, cry with passion, and when they enjoy something, they sure aren't shy about it. <br />
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We went to a birthday party recently and the kids thoroughly enjoyed themselves. Party? Just hearing the word gets them breathing a little faster. Nevermind they barely even got to see the adorable Baby Ollie, the birthday boy, and they probably didn't even know who actually threw the awesome party. But Steven & Cathie, thank you for inviting us and thank you for the genius idea of having the celebration right next to a gigantic grassy hill. Waaaaay better than a bounce house for sure.<br />
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At first, Derek was stuck on me like a Koala on a eucalyptus tree and I wasn't sure if Marcus would be up for walking around so much on thick grass.<br />
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But once they had a taste of the decline, they were hooked.<br />
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Thank you, Uncle Josh, for carrying our huge bag of rice up and down the hill many many times. Sorry I didn't help you at all and just took pictures instead. Sorry that your daughter, Lydia, had to watch you entertain another child the whole evening. Hope you didn't pull anything.<br />
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Meanwhile, Audrey rolled herself down the hill a few times.<br />
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And probably caught a couple bugs in her mouth on the way down.<br />
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Marcus was thrilled that he could climb the hill on his own and then "run" down it by himself too.<br />
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He also needed some extra flossing that night with all the tiny insects stuck between his teeth.<br />
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He smiled so hard, it almost looked scary. Just imagine this picture with fangs.<br />
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And then when Daddy came to free him from his walker, it was joy overload.<br />
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So yeah, the kids slept real good that night.<br />
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And the parents did too.<br />
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Thanks again, Ollie. Happy birthday and thanks for the awesome party!<br />
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<br />Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-18535841993356935842012-06-18T22:47:00.000-07:002012-06-18T22:47:24.999-07:00Say Yes To CrackI guess he's technically not a baby anymore, especially because his muscle density is more than most men I know.<br />
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But I have a feeling that even when his body building ministry goes worldwide, we'll still be calling him our baby.<br />
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During one of his shows, where he rips phone books for the Lord, Mike and I will be in the stands cheering him on.<br />
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We'll be doing fist pumps and give each other high-fives while yelling into a megaphone, "Oh yeah, that's our baby! You go ahead and flex your biceps for Jesus, son! We are so proud of you!" (By the way, don't be jealous of my beautiful mess in the background.)<br />
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I'm not sure what this post is about except that I was doing dishes one day and noticed that Derek's diaper was getting loose.<br />
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And this mama don't give up opportunities for good baby butt crack photos.<br />
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Believe me, I've got some good ones on file because it turned out to be quite the photo shoot. But they aren't very appropriate for the worldwide web and they may diminish the dignity of his muscle man ministry in the future. But if you ever come over to our house, I'll show them to you in person. Hee hee.Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com5tag:blogger.com,1999:blog-3986723081618998076.post-71846488325551938262012-06-12T23:02:00.001-07:002012-06-12T23:02:59.665-07:00What My Son's Birthday Means To MeWe celebrate birthdays to rejoice over a person's life...how they've grown, what they've accomplished and contributed over the years, and how God has met them. We add another number to their age and wish for prosperity and blessing until another year passes, anticipating what the future holds.<br />
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Marcus turned 5 this past weekend and we did just that. But as much as we celebrated what God has done in his life, I can't help but also reflect on what He's done in mine. Were it not for this birthday, I wouldn't be the same person. I would be a completely different wife, mom, sister, daughter, friend.<br />
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It's hard to pinpoint exactly how Marcus' life has changed me. Of course, he's opened our hearts to the painful yet beautiful world of special needs and indeed, he's made us more broken and he's tilled the soil of our hearts so that different lessons could be sowed. But at the most granular level, Marcus has changed me by allowing me to feel like never before.<br />
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It's like my life was viewed in black and white when in reality, everything was in color. And then when Marcus came along, we were able to see the vibrancy of every hue in the spectrum. The darks were darker than ever, but the lights were striking, just breathtaking.<br />
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I think that's how Marcus has changed me the most. My senses are heightened like never before.<br />
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Living life day by day, I often catch myself saying, "This is no small thing." Throwing a birthday party, eating food, sleeping through the night, having a place to call home, talking on the couch with my husband, laughing, feeling grass under my feet, seeing smiles on my children's faces, having children at all...no small thing.<br />
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And as much as I've been able to appreciate this life, Marcus has also awakened my yearning for the life that is to come.<br />
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Heaven didn't appeal to me so much when I was younger. Probably because I sought my heaven here. My heaven was going to be my husband and children and the family we'd build together.<br />
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But as Marcus has helped us see this world in vivid color, he's also unveiled the reality that at best, this world is fallen, broken, imperfect, brutal, utterly incomplete and desperate to be restored. We fall short, we hurt, we fail. <br />
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We rejoice that Marcus turning 5 is no small thing. I see him happy and smiling despite the challenges and I'm utterly grateful. I don't deserve him and all the ways God has blessed us through him.<br />
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At the same time, I can't wait until we will truly rejoice and celebrate like never before. There will be a joy never experienced here and a beauty never beheld here, because my Savior will be there. The One who experienced all of life's hurts, the One who owned up to all my failures, and the One who continues to intercede for me today...He will be there.<br />
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Now that's going to be one celebration.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0239-1.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0239-1.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com5tag:blogger.com,1999:blog-3986723081618998076.post-38678531254420784442012-06-08T23:50:00.001-07:002012-06-09T00:17:26.394-07:00What We've Been Up To LatelyPlaying peacefully<br />
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Playing peacefully before a fight<br />
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Getting wet and loving it<br />
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A lot<br />
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Ending the soccer season on a high note<br />
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With the whole family there to cheer her on (Cousin Norah really was excited to be there)<br />
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Audrey scored the last goal of the season. She rocks!<br />
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Partying to celebrate how the Blue Lightning developed in skill and in our friendships.<br />
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Audrey was chosen "Best Defensive Player" by Coach Daddy.<br />
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Derek was voted "Best Mascot" by Mommy.<br />
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Closing out 1st grade like a big girl<br />
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And a big monkey<br />
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Being proud of our Auj<br />
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Exploring the CA Science Museum<br />
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(Is it just me, or does the museum need extra donations to update their bulletin board from the '80s?)<br />
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Resting afterward on someone who's not Daddy, but it's all good.<br />
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Painting "en plein air" (Sorry, gotta use my college education somewhere)<br />
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Loving on our daughter the best way we know how<br />
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Scuba bathing<br />
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Showing sister how cool she is<br />
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"Mom, did you see how cool I am?"<br />
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Admiring how sister can go deep-sea bathing in 5 inches of water<br />
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"Don't worry, brothers. You'll be as cool as me some day."<br />
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Reuniting with Mr. Mark for physical therapy<br />
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Maybe needing a different kind of therapy one day<br />
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Getting dressed up for the upcoming ballet recital<br />
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Getting teary-eyed that my baby is growing up<br />
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And I'll "end" it at that. :-)<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0141-1.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0141-1.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com3tag:blogger.com,1999:blog-3986723081618998076.post-18094159647122986412012-06-05T13:52:00.002-07:002012-06-05T13:52:32.315-07:00She Loves FiercelyAudrey, Marcus and I visited their soon-to-be new school during their Open House. It was the first time we really toured the campus together and saw what would be their new school community this Fall. As we peaked through the last few classrooms and walked across the playground, Audrey very gently walked toward me as if she needed a hug.<br />
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<b>Me</b>: What's wrong, babe?<br />
<b>Auj</b>: (talking somberly) They're looking at Marcus, Mom. Everyone keeps looking at Marcus.<br />
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My heart sank. I thought I was the only one having to smile through the stares.<br />
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<b>Me</b>: Oh, Auj. They're not staring at him because they're being mean. They're looking at him like that because they've never seen Marcus before. And once you both start coming to the school and they get to know Marcus and how he walks in his walker, they won't stare anymore. Don't worry. They're just curious.<br />
<b>Auj</b>: (silent)<br />
<b>Me</b>: What's wrong?<br />
<b>Auj</b>: I'm sad. They're looking at Marcus because he can't walk.<br />
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I loaded the kids in the car, giving Audrey an extra long hug while assuring her the best I could that all would be okay. And on the way home, I heard from the back seats, the sweetest sweet-talk a girl could give her brother. "Marcus, look at those projects all the kids are holding! Mom, when I go to this school and if I make a solar system project, I want to give it to Marcus." And for minutes after, just one sweet word after another.<br />
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I always knew Audrey loved her brothers, but now I know that this love she has for Marcus is something fierce. And since that night, my heart has been heavy for my daughter, who is experiencing something I will never know for myself...loving a sibling with special needs.<br />
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My immediate reaction is to take away her sadness, as if I could somehow fix the situation so that she wouldn't have to hurt. But how selfish that would be of me, to alleviate the pain so that I, too, wouldn't hurt as both Marcus and Audrey (and Derek too later on) carry their own unique set of struggles. Because I know that although the lows hurt deeply, they allow for joys that can only be experienced after being pricked and stung. And so, as much as I have to give Marcus over to the Lord, so must I trust Him to take care of my daughter, whose pain only He will fully understand.<br />
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My sister gave me a pep talk after this night and she reminded me that this is a privilege for Audrey and that God would teach her things and open her eyes to a world that otherwise would never be known to her. And that is my prayer for my daughter...that this burden she bears would be a gift to her, that He would soften her heart to others who hurt, and that she would know more intimately her suffering Savior through being Marcus' sister.<br />
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I remember when she was only two, asking several times a day, "You crying again, Mommy?", the pain of Marcus' diagnosis still fresh on my heart although I had tried my best to keep happy for Audrey. I don't remember how I responded to her, but I didn't think that the time would come so quickly, when she would understand the reason for my tears. And so it begins...<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=2012-03-28.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/2012-03-28.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com6tag:blogger.com,1999:blog-3986723081618998076.post-55010893910050421482012-06-04T13:18:00.000-07:002012-06-04T13:18:01.434-07:00Forget-Me-NotsTidbits of family life I don't want to forget:<br />
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1. Derek has THE softest, smooth as butter skin I have ever touched in my life. It will make for a nice canvas for the tattoos he'll be getting. And I'll tell all his motorcycle gangster friends that under his leather jacket is baby butt skin.<br />
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2. Auj: Mom, I really want to sing at the Orange County Swap Meet with Alvin and the Chipmunks.<br />
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3. Auj: Mom, is it okay if I memorize my ballet recital routine and then try out for So You Think You Can Dance?<br />
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4. Marcus: I don't like kisses anymore. They're too lipsy. (This makes me depressed. He doesn't let me mouth kiss him anymore. Ugh.)<br />
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5. Very often, we somehow find all 5 of us in our small bathroom together. One night, CA Grandma was over and we upped it to 6. Next time we have guests, I wanna try for 8.<br />
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6. Audrey wore mismatched socks to school for 2 weeks straight. It was easier than digging through the mountain of unfolded laundry to find ones that matched. I love that she was cool with it. Socks aren't her fave, anyway.<br />
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7. Mike and Audrey have been going out on adorable father/daughter soccer dates. They leave the house in their soccer clothes, with their matching calf muscles and matching excitement for all the sweating they'll do together. Then, they come back with their matching wet head/hair and matching Gatorade mustaches. They always seem to stop by some market together and bring home ten 32oz Gatorade bottles and loads of Doritos because, of course, they were on sale 10 for $10 or 2 for $5.<br />
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8. Audrey, reading her <a href="http://mrssuelee.blogspot.com/2011/12/just-in-time-for-christmas-giveaway.html">Power Bible</a> in the car: "Mom, Dad, what's a foreskin?" <br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=Instagram16.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/Instagram16.jpg" /></a><a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=Instagram17.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/Instagram17.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com2tag:blogger.com,1999:blog-3986723081618998076.post-88978177508956342752012-05-31T21:08:00.000-07:002012-05-31T21:08:11.475-07:00StaringAs much as I love being a mom, there are some things in my job description I don't necessarily enjoy. Cooking for them, not my favorite. Cleaning after them, no thank you. Taking them to run errands, brushing their teeth, disciplining them, eh, blah, urgh. But there's one thing both Mike and I love about raising this brood of ours...staring at them. I don't know if it's required of us as parents, but we are very good at it. The way Marcus chews his food with his mouth open, the way Audrey flashes her gummy smile, the way Derek slaps his bare feet on the ground and propels one arm while walking to the next room, yeah, we've studied it all meticulously. I'm sure all you moms and dads out there feel the same way.<br />
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Maybe that's why I like taking pictures so much; so that after the 5th "Children, get in bed and go to sleep now!", we can huddle around the laptop to stare at them again and giggle at how amazing it is that God gave us this family, of which we are completely undeserving.<br />
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Lately, I've loved watching them hang out, especially during the peaceful, non-violent, screamless moments when they're enjoying each other as much as I'm enjoying them. Something about seeing them quietly huddled around together gives me warm fuzzies.<br />
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And Audrey's gotta be loving the built-in fan club she's got with her brothers. Whatever she wants to do is the best idea, in their opinion.<br />
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Derek, though suffering from "I'm a 3rd child so I'm a bad boy," really wants to thank us for providing him two siblings to look up to.<br />
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He always has someone to downward dog with.<br />
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<tr><td class="tr-caption" style="text-align: center;">Double Dog</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Triple Dog</td></tr>
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Unfortunately, though, his head circumference, which is in the 100th percentile for his age, provides a bit of a yoga handicap.<br />
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So he'll just do some meditating instead. Namaste, my child.<br />
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Or he'll sit and wait while his brother perfects his Jean-Claude Van Damme.<br />
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What's another spectacle worth staring at? Seeing how madly in love CA Grandma is with her lover boy.<br />
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And watching Big D dish out the love to his family...kills me!<br />
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I've got to admit that I also do my share of husband staring, but I will spare you the details lest you get queezy. It helps when he is holding one of our offspring so I can analyze them both simultaneously. It also helps when they share the same face.<br />
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This moment, however, I will try to forget for the rest of the my life. Why? Because my beloved daughter conveniently "forgot" to wear an important piece of undergarment this evening and I didn't know until after we got home, which was followed by strict orders to get in the bath and then me covering my face in shock, totally appalled. Sorry to all the kids who have since ridden the ostrich at the Irvine Spectrum carrousel. My apologies.<br />
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The way Mike leans into the kids for a kiss, the peach fuzz you can see under Derek's ears, the way Marcus rolls his head and flaps his legs when he gets excited, the way Audrey tucks her hair behind her right ear when she's hesitant about something...I've got it all down.<br />
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<a href="http://s3.photobucket.com/albums/y76/mrssuelee/?action=view&current=DSC_0118-2.jpg" target="_blank"><img alt="Photobucket" border="0" src="http://i3.photobucket.com/albums/y76/mrssuelee/DSC_0118-2.jpg" /></a>Sue Leehttp://www.blogger.com/profile/08560424605691000666noreply@blogger.com3