tag:blogger.com,1999:blog-23148049544544780282024-03-04T21:42:32.336-08:0013 PavementsJuliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-2314804954454478028.post-59410554149732579402015-01-25T03:33:00.001-08:002015-01-25T03:33:40.155-08:00Jules - Your Person Has Something to Say<div style="text-align: center;">
<b><span style="font-size: large;">Remember that one time, that Julie added me (Nichelle, Sister-Friend, Aunt Shell, Wallspogolian, etc.) as "an author" on her blog...and then forgot about it until I hijacked it years later?! Ahhhh...good times! :) </span></b></div>
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So, anyway...I just wanted to drop in to share a little. First and foremost, please be warned that my writing 'skills' are nowhere near as sophisticated as Julie's. I overuse exclamation points, I have gotten really good at creating run-on sentences over the years, and you know those three little periods that people put together to try to show a slightly awkward pause? The ones that I've already used three times now? Yeah...I'm kind of obsessed with using them...sorry, not sorry. Okay, I'm gonna try to focus now because I really am not on here JUST to be annoying, I have a point!!!!<br />
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About two weeks ago I had the opportunity to be Julie for almost four days! Well, I got to be about 50% of Julie. The 25% of Julie that is a business woman was taken over by Taunya (thankfully...I hear it was crazy...sorry, sis!). And the 25% of her that is Coria's wife, well, she was still that. But the 50% of her that is a Mom and home maker, I was that 50% for four days...and it almost did me in. How on Earth she manages to be so incredibly amazing at what she does is absolutely beyond me. <br />
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It only took 473.5 tries to get one without him moving.</div>
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Cole will be 2 in March. Pause a moment to take in that crazy fact. He is likely going to be the youngest cross country runner in Olympic history. I'm pretty convinced he'll be ready to compete in the next summer games. He is, too. He is so fast. And always going. Running. As Julie says, his two speeds are 'asleep' or '100mph' (or something to that affect). This little man has to have a hidden battery pack somewhere. There is a secret though to getting him to hold still for all of 3.5 seconds...you show him or give him a truck! To say that he is obsessed with trucks is like saying that Brandon is kind of tall. The kid lives for trucks!!!<br />
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This is a pretty accurate picture of what every moment of all four days looked like.</div>
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I had my dog, Buddy with me. He wasn't very good at staying off of the couch like he was supposed to, but he was very patient when Cole would ride him or 'Sleeping Beauty' (Livi's doll) would nap with him. And he was a HUGE help with the post-meal clean-up process. Particularly because Cole is learning to feed himself and is in this super awesome throwing food phase. The only problem with that...is that his little digestive tract isn't used to eating that much people food so by the morning of day two we all woke up to a bit of a puppy mess on the floor of the kitchen. It gets better. That morning, as soon as I woke up, I went straight from Julie's bed to the kids' room and got Cole out of bed. I changed his diaper and, the second I got that last tab on his clean diaper fastened, that little runner was off!! It took me all of thirty seconds to fold up his dirty diaper, stand up, and walk into the living room but in those thirty seconds, he had tracked Buddy's 'puppy mess' throughout three different rooms in the house. Awesome. </div>
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After I tossed little man in the bath, sanitized the house, and cooked and fed everyone breakfast, I went to go grab Cole from the middle of his sea of trucks in the living room only to realize that he had made his own 'toddler mess' through his diaper on the floor of the living room. Awesome.</div>
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New pink glasses and just a few missing teeth. The cutest.</div>
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That evening I had put Liv and Cole both to bed and was getting Netflix started on the living room tv for myself, and my friends Rachel and Brian. It hadn't been 20 minutes since I'd put Liv down when she came out. She walked right up to me on the couch and said "Aunt Shell, I swallowed a penny." Umm...you WHAT!? Wait, did I hear that right!? I was on the phone with Julie so I shared with her what Liv had just told me and she said the one word I was thinking but couldn't say with Liv standing right in front of me. So, the four of us adults did what adults would naturally do in this situation, we Googled it. Basically we learned that if she wasn't choking on it and it wasn't blocking her airway, it wasn't an ER situation and we could call her doctor the next day and likely be advised to just let it run it's course. Knowing her breathing issues I snuggled with her on the couch for twenty or so minutes while she "read me a story" so I could make sure that everything sounded normal.</div>
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The kiddos and I on our way to pick Mema up from the airport.</div>
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The next day we picked up Mema from the airport. All three of us were SO excited to see her!! And I think she was pretty excited to be with the kiddos! She had the kids for the next week and then was able to stay and help Jules for another few days after she got home, too. I thought it was difficult just keeping everyone alive for four days, but Mema did it for a week PLUS she got multiple projects around the house done, too! And towards the end, her and I both sat and discussed how in awe we are of Julie. Who has a business, is a wonderful & supportive wife, a loyal friend, a terrific sister and daughter, keeps a beautiful home, and isn't just a keep-your-kids-alive Mom (like me) but an I'll-do-anything-it-takes-to-make-sure-my-kids-have-and-become-the-best Mom. </div>
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<b><span style="font-size: large;">Jules, please know that you are MORE than enough. You ARE a good Mom. You are an absolutely incredible Mom. You are beautiful. You are an inspirational woman. You are my person. Love you, my sweet friend.</span></b></div>
Nichellehttp://www.blogger.com/profile/08614504205848501334noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-43783655962894318712014-11-11T14:24:00.002-08:002014-11-11T14:24:59.154-08:00Steps Ahead<div class="separator" style="clear: both; text-align: center;">
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The other morning, I woke up early before anyone else was awake. I knew the day was going to be busy and I wanted to get a workout in before the rest of the day's commitments. I quietly slipped out of bed, dressed, slipped on my running shoes, and headed out for a run. I'd had a lot on my mind. A lot of the same things that every other mother/wife worries about. The negative self talk we find ourselves doing when we feel like we are falling short, failing our husband or kids, yelling too much, losing patience, not being the version of me Heavenly Father wants me to be, hefty medical bills, neglected to-do lists.....and on and on and on.<br />
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I could feel the weight of my thoughts physically slowing my pace. I turned a corner and saw the long stretch of road before me and all of the sudden I felt overwhelmed. The endless to-do's, the things that need to be changed, the worries, the miles I needed to go felt almost too heavy. For a split second I thought about just turning around and walking home, but something inside me said, "Keep going, just watch the ground. Focus on the steps right ahead of you." So I steadied my pace and pushed forward. My thoughts were still circling with all the ways I was falling short and how far I needed to go. My eyes filled with tears, the burdens I was feeling in that moment were threatening to crush me. I said a little prayer as I ran, asking Him to show me how to fix what needs to be fixed, how to change this, how to be that. Again, I heard something inside me say, "Focus on the steps right ahead of you."<br />
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And that was it, my answer. I was, and have been, focusing on everything all at once. I could see how far I need to go to be the person I need to be and it all felt so impossible. But if I just focus on the steps in front of me, just fix or change a little bit at a time I will get there. To try to change everything all at once IS impossible. It would be setting myself up for failure. <br />
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I worked through all of this in my mind as I ran, feeling a surge of confidence and determination and less weighed down. I'd kept my gaze down the whole time, not focusing on the next mile, not focusing on the time. I hadn't looked up in a while and decided to peek. And just like that, I'd run 4 miles and not even realized it. (Four miles may not be something to get all excited about, but coming from someone who a few months ago couldn't run a mile, this was HUGE.) I'd focused on the steps, focused on the journey, not just the destination.<br />
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When I finally made it home, I burst into tears. I cried because I was proud of my body. I cried because I was tired. I cried because in this silly little run God made it clear to me that He knows me, He hears me. And while it all felt a little silly and perhaps not so life changing for anyone else, it changed me. I'm not perfect. I still have so far to go to be who I want to be. But I'm a better version of myself than I was that morning. And I think that is exactly the point.<br />
<br />Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-92137475483758944472014-11-10T10:03:00.002-08:002014-11-10T10:03:46.273-08:00Q&A and MonstersI know the best people.<br />
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One of the perks of growing up in a small town is the connections you make and the friendships you share seem to stay with you. <br />
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A few weeks ago my friend <a href="http://www.christinawilliamsblog.com/">Christina Williams</a>, who I have known since I was little, did a little Q & A with me about <a href="http://christinawilliamsblog.com/olivia-and-the-monster-project/">Olivia and the Leggings/Monster Project</a>, along with the most adorable tutorial on how to make sock monsters. She is so creative. She is an awesome designer and her blog is full of the best ideas. I can't thank her enough for doing this and to help get word out on this. I feel blessed that our paths have crossed again over the last few years. <br />
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Christina, you are the best!<br />
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<span style="font-size: xx-small;">P.S. I have some very long overdue blog posts scheduled for this week! I know, I've said it before. But seriously. I promise.</span>Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-39991492876639528312014-07-17T21:16:00.001-07:002014-07-17T21:16:08.763-07:00I had to distance myself from electronics for awhile. I disabled my Facebook for a couple months, had sporadic activity on Instagram, let my emails reaaallly pile up, ignored my blog...I just needed to disconnect and feel a little more present in my life. The idea had been in my head awhile, so I did it and disconnecting accomplished a lot of good. For now I have (selectively) reconnected. I'm good with where I'm at. But I have some catching up to do here. Stick around!Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-52469560623245978002014-05-05T09:42:00.001-07:002014-05-05T09:44:38.864-07:00I'm gonna go ahead and keep it real for just a minute. <br />
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Sometimes I don't think I really know who I am anymore. I don't say that to be all down in the dumps or wo-is-me-life-is-hard or anything. I think this is a sentiment a lot of moms share. Maybe not a lot, but I've had more than one conversation on this topic to know I'm not alone.<br />
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I don't even know how it happened. I just stopped one day when I was getting ready and just stared at myself in the mirror. I had lines on my face that weren't there before, the shape of my face was different, the curve of my hips didn't belong to me, and that hair! Definitely not mine. I didn't know this person. I didn't know what she liked or what she needed. It was all so..weird.<br />
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When I was younger, all I ever wanted was to get married and have some babies. I mean, it was ALL I wanted. And I got that! A good husband and sweet kids. But no one ever told me that in exchange for getting what I wanted, I'd lose myself in the process. I want to say I'm okay with that. I've had other women tell me they are okay with that. But truth is, I'm not. I used to draw and sketch, to write for fun, to read complicated books. I used to do more service. I used to bake. I used to have an interest in photography and had taken a few classes. I used to run and actually enjoy it. I used to fill my callings with more purpose. I used to be a better wife. I used to be a better friend. I used to be a better mom.<br />
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Now I feel like I am only parts of those things. <br />
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I've done a lot of thinking since then. This needs to change, and I am trying to change it. It's so much easier said than done. So much. Between husband, kids, and running our business I have very little time left to myself. But in the last couple months I've made use of that time by making sure that 1) I get in a good workout. And 2) I read my scriptures every day, even if it's just a few verses. I was doing those things before, but I have tried to focus my efforts. I work out harder, I pay attention more, and ask my husband questions when I don't understand. The result? I am about 26 lbs lighter (and counting) and feeling a little more enlightened. Have I found myself again? No. Not even close. But I'm moving in that direction.<br />
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I keep coming back to <a href="https://www.lds.org/general-conference/2008/10/happiness-your-heritage?lang=eng#listen=audio">this talk</a>, probably one of my favorite's of all time. Every woman needs to hear it and act on it. I am doing no favors to anyone in this house by feeling lost. I am more. I need to remind myself that I am. I need Livi to see that I am. I need my husband to see that I am. It's a hard thing to do, and finding that time is nearly impossible. But I'm going to find it. I'm going to go, do, create, and be. I owe it to myself.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-45219267957266980832014-04-14T21:07:00.000-07:002014-04-14T21:07:03.697-07:00In Which I Survived Seattle With Two ChildrenI've been home from our most recent Seattle trip for about two weeks now and I feel like I am still trying to recover.<br />
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It was <i>that </i>traumatizing.<br />
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Liv was scheduled to see her ocularist, have an EUA, and see her oncologist. These trips are always especially long hard. It's a lot of time spent sitting in small exam rooms, pre-op for surgery, and then more exam rooms. I have some pretty intense anxiety building up to these trips, and this time was especially bad. About a month ago, I noticed a strange lump in Liv's neck. It had slowly got bigger and had me so worried. Given her history and what we can expect in her future, any strange lump or bump is going to put me on edge. You could say I was a basket case in the weeks leading up to this appointment, but that would be a gross understatement.<br />
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This trip happened to fall over Brandon's finals and he was unable to go with me. With that and our business and its complete unpredictability, we decided that it would just make more sense for me to take Cole as well.<br />
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I'm gonna sum up the trip for you. Lots of crying from me, lots of <i>screaming</i> and crying form Cole pretty much everywhere we went (and for hours and hours), no one slept, more crying, ferris wheel (!) rain, emotional breakdown in oncologists office, 3.5 hour drive home, with more screaming, Brandon greets us at the door and I, again, burst into tears the moment he hugs me. My nerves were ragged and my patience was running dangerously thin. Really, the only reprieve I felt in those three days was those 5-6 minutes on the Seattle ferris wheel. It was a bit of magic for Liv. That girl is alllll about the magic. So I'm good with that.<br />
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But anyway. It was just bad. The news we got was pretty much good. No new tumors have developed in her eye. She does need a new prosthetic (womp womp), and her oncologist seemed to think her lump was just a weird infection, nothing major as her blood work was good. It was only after the good news that I burst into tears.<br />
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Poor Dr. P, didn't see it coming. He looked at her, then at me and slowly shook his head saying, "Considering everything, her chromosome deletion, all her hurdles...she just shouldn't be doing this well." I felt a stinging in my eyes, tears were threatening. He then asked about our job, about Brandon, and I explained finals, how the two of us run our business 7 days a week. He asked some more questions, watching me trying to soothe Cole, keeping Liv occupied, trying to keep the situation peaceful as I talked about my worries with all of that and my anxiety surround Olivia. He leaned toward me and quietly said, "It's hard. I know it is. You're doing a good job, mama." And then I lost it.<br />
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I felt, at that moment, anything but a good mom. I feel like that often. I was sleep deprived, overwhelmed with relief, and physically and emotionally exhausted. I try not to think that my life is "hard." Hard has always equated to "bad" in my brain, when that is hardly the case often times. But here's the thing... My life is good, and I like it and I wouldn't trade places with anyone for anything. But for some reason, when this doctor who knows me, but not really the details of my life outside of my sick child, looked at me and gave what felt like permission to acknowledge that while my life is good and I have so much to be grateful for (and I am!), it is also hard. It was validating, something I wasn't even sure I needed, but I did.<br />
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<i>My life is hard.</i> (That is another post, for another time) But it's okay, and I'm okay.<br />
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Everyone's life is a bit hard, I think. Hard different ways, but we all have our struggles. And that's sort of the point, I guess. Life is hard for everyone, that's what teaches us compassion and is basically the whole point anyway, right?<br />
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So, I guess I'm just gonna put my shoulder to the wheel and all that. Because what else am I gonna do? I'm just committed to making the best of whatever lies ahead.<br />
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<br />
So. All in all I learned:<br />
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1. Cole will NOT be returning to Seattle in the foreseeable future.<br />
2. Olivia needs a new eye.<br />
3. The Seattle ferris wheel will save the day.<br />
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<i>** Almost five weeks later and this lump in her neck is still there, and it's bigger. We are seeing another doctor Wednesday, because I'm not at all convinced she is in the clear.</i><br />
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<br />Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com4tag:blogger.com,1999:blog-2314804954454478028.post-50927349340110551822014-03-13T20:52:00.000-07:002014-03-18T20:55:52.751-07:00Remembering 3/13/04<div align="center">
I remember it was sunny, warm Unseasonably so for March in New Jersey. I had gone for a pedicure and a movie with my friends.</div>
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I remember a voicemail from my dad, thanking me for his birthday gift that had just arrived. <em>"I just wanted to call and tell you thanks for the gift. Remember that I love you more than anything. Thanks again." </em>I called him back, we chatted a few minutes. I was just about to get on the Jersey Turnpike so I promised to call him back when I was home.</div>
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I remember calling back a couple hours later. No answer. I called again later. Nothing.</div>
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I remember I was working that night, a Saturday. Most of my nanny friends were working that night, too. The Crowley's were going to a party. I put their kiddos to bed, except for Edie, the 2 year old, who always resisted. </div>
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I remember Katie calling the Crowley's land line. <em>She never called the land line. Weird.</em> She asked me if I was alone. Except for Edie, I was. <em>"Call someone to come over and then call me back."</em> I begged her to just tell me, she wouldn't.</div>
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I remember calling all of my nanny friends. No one's employer's were home. I started to panic. After an hour, Jodi called to let me know her employers would be home soon and she would be right over. </div>
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I remember she came over. I called Katie. Katie spoke to Jodi first and I watched her try to keep her expression calm. I wanted to vomit.</div>
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I remember standing in the Kitchen doorway with Jodi as she handed me the phone. "<em>I hate to be the one to tell you this, but dad killed himself tonight."</em></div>
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I remember crumbling to the floor in sobs and screams. Edie began to cry. I tried to call the Crowley's to come home and could not catch my breath to utter a word. Jodi took the phone, scooped up Edie and told them what happened as I sank to the floor, my body racked with sobs.</div>
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I remember everything moving in warp speed. Jodi must have called everyone there who cared about me because my friends started showing up one by one, my bishop, a few of our guy friends in the ward. </div>
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I remember sitting on the ottoman, holding myself, rocking back and forth. Charlie rushed in as he and Liz came how and scooped me up in a hug that felt like saved me life, telling me over and over there was nothing I could have done, nothing I could have done, nothing I could have done... A phrase I'd hear over and over for years to come, but somehow it only meant anything right then. It was in there home I needed to be right then.</div>
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I remember receiving a blessing. Charlie booked me a flight home. People came in and out. I don't know how much time passed....a long time to be sure...before everyone started to go home, except for Jodi and Cheryl.<br />
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I remember being afraid to go to sleep, thinking that somehow the horror of that night would swallow me whole and I would never recover. Jodi, Cheryl and I sat on the living room couch well into the early morning hours. They turned on a movie for distraction. Sometime around 4 am, they drifted off to sleep and I crept downstairs to my room and packed my bags.<br />
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Everything for weeks following is mostly a blur, I don't remember much else. Which is a blessing, I think. I do remember that even though it felt as if every fragment of my life had been hopelessly and completely broken, I felt overwhelmingly loved. It was a completely encompassing love I could physically feel pouring out of the hearts of others and into my own. As I sit here 10 years later, I realize that I can still feel that love. Not just because the feeling was so powerful, but because it is still there.</div>
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Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-50200562585377597042014-03-09T20:37:00.001-07:002014-03-09T20:37:31.749-07:00The Leggings Project...And Some Monsters, TooLast summer, my sister-in-law introduced to me to Kendra of the <a href="http://kendraandryanwebster.blogspot.com/">Calling All Angels</a> blog. She had just moved to Tri-Cities from Utah. I had read her blog before and was familiar with her story about her sweet daughter, <a href="http://kendraandryanwebster.blogspot.com/p/makenzie-rye.html">Makenzie</a>, who died of SMARD when she was only 5 months old. I had been impressed with her strength, with her realness, and her honesty that she portrayed in her blog. Having got to know her over the last several months I can actually say I am blown away by Kendra's strength, her endurance, the way she makes every moment count, the sweet mother she is, her loyalty in friendship, the service oriented way she lives her life...all of it and more. She is such an incredible person and I am so very thankful to call her my friend. <br />
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Every year Kendra gathers donations for her Leggings Project. She collects baby leggings (and a few other things) all year long for infants in the PICU and then donates everything she collects to Primary Children's Hospital in Salt Lake City. (You can read more about the Leggings Project and how to make them <a href="http://kendraandryanwebster.blogspot.com/p/leggings-project.html">HERE</a>.) She has donated thousands of leggings since Makenzie died and continues to do so. <br />
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A few months ago she approached me about helping her out a little and doing something in honor of Olivia and her story. I jumped at the chance to give back, help out, and maybe make a sick child smile. We came up with the idea of making little monster dolls, something lovable, something to snuggle, something bright, and maybe a little silly. My twist was to make them one-eyed, give them an eye patch, or make the eyes different in honor of Olivia's battle with retinoblastoma. There is a lot that makes Livi unique (and wonderful!) and her eye is something I want her to be brave about, have a sense of humor about, and be totally open about. <br />
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I spent a week in Utah with my grandma and two of my aunts making monsters (and some dolls and some puppies. Honestly, anything associated with Livi SHOULD have a puppy somewhere.) And this is what we came up with.<br />
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This is what I hope is just the beginning. We want and need your help! We want this to be the biggest and best year for the Leggings Project yet. Everything collected until June will go to Seattle Children's Hospital and everything after that will go to Primary Children's Hospital. Help us with leggings or little monsters! It's such a good cause. You can't imagine the difference these kinds of things make, not just to the kids, but to the parents. You would shoot the moon if it meant a little sunshine, comfort, and warmth to your sick child in the hospital. <br />
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The leggings are simple and easy to make. Kendra has step by step directions <a href="http://kendraandryanwebster.blogspot.com/p/leggings-project.html">HERE.</a> Can't sew? Send us the socks, we will make them. As for the monsters, there is no right or wrong way to do them, just give them one eye, wonky eyes, one eye and the other eye a star or heart or any other shape. Get creative! We tried a few different patterns we found for free online and tweaked them a bit. We did figure out that <a href="http://www.itsalwaysautumn.com/2013/01/28/stl-felt-monsters-to-make-with-your-kids-plus-free-mix-n-mat.html">THESE</a> little guys made with felt were pretty easy, were just top stitched (no turning required!), and fast. You can mix and match everything she has and they all turned out adorable. We are trying to come up with a few more simple patterns and I will post them when we do. Again, if you can't sew send us material and we will make them, or send us the bodies made and we will stuff and finish them. Kendra also collects blankets, hats, and books as well. Donations do not have to be big or grand to make a difference. Even one pair of leggings makes a difference.<br />
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Spread the word, tell your crafty friends, tell your grandma! This is such a good service project for church groups, youth groups, a service-oriented girls night, even an Eagle Scout project! (Ok, that might be pushing it, but maybe not!)<br />
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I am so excited about this! I am excited to share Makenzie's and Olivia's stories. I am excited to teach Olivia to give back and teach her about service. If we can help put a smile on even one child's face, I'm happy. <br />
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If you have any questions or need to know where to send items please email me at juliedecoria@gmail.com or Kendra at <span style="color: #666666; font-family: century gothic, arial, sans-serif; font-size: x-small;"><span style="background-color: white;">livingformrw@hotmail.com</span></span>Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-2343915404725008462014-02-21T22:20:00.001-08:002014-02-21T22:20:15.481-08:00Old WoundsI miss my <a href="http://13pavements.blogspot.com/2012/03/3132004.html">dad</a>.<br />
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That's hard for me to say, and I really couldn't tell you what makes it so.<br />
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I think about him all the time, always have and probably always will. But I don't always miss him, at least not in the way that makes me ache. And it's been a very long time since I have felt this way. But lately, I miss him in exactly that way. It makes me uncomfortable. It makes me angry. <br />
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Since July or so I have been grappling with some pretty intense anxiety. It was mild at first, but it has spiraled wildly beyond anything I have ever experienced. I don't really talk about it. I have had exactly one conversation about this with two of my friends. But not much beyond that. It feels as though my anxiety triggers something inside me, something I relate to my dad. My reactions to certain situations, my feelings, my responses...it's giving me a sort of out of body experience, I'm watching myself deal with some difficult emotions from outside myself. I watch myself and for the first time I feel like I'm seeing pieces of my dad. But not in a good way.<br />
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And all at the same time I want to hate him, be angry, cry, and hug him and have him tell me it's all going to be okay.<br />
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I miss him. I don't want to miss him. I like being in the state of acceptance I have been in for years, but somehow I lost that. And nights like tonight it feels like he died all over again and I am so mad. Mad that he left, mad that I have his DNA, mad that I can't talk to him, mad that I can't hug him, mad that he doesn't know my children or my husband. <br />
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I don't know what to do with all this. All this anxiety, all these old wounds opened. It is so deeply complicated. I can't bring myself to actually vocalize how I'm feeling. I can type a few words on a keyboard, but I'm barely scratching the surface.<br />
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I try to remember the good. There was so much of it. But the bad, even though its over, was so bad that it still threatens to swallow me whole sometimes. <br />
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I'm fighting so hard for that not to happen. So hard. It's a lonely battle. I'm fighting it alone. Because I am not my dad. I am NOT my dad. His past is not going to define me, no matter how much it tries.<br />
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But still, despite the anger and anxiety, I really miss my dad.<br />
<br />Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-61609018084585004482014-01-01T20:10:00.001-08:002014-01-01T20:10:47.850-08:002014<div class="separator" style="clear: both; text-align: center;">
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I have a chalkboard hanging in my house that I write different quotes or scriptures on to serve as reminders (mostly to me) of what we need to be working on. For the past six weeks or so it has said, "Let all that you do be done in love,"a take on 1 Corinthians 16:14. I put in on the board on a day where I was feeling just so done with everything and everyone. I was overwhelmed and tired and I was quick to show it to anyone and everyone near me. Specifically and unfortunately my sweet little family. It was that day that I realized how that I was feeling frustrated and tense more than I wasn't. And if I was being honest with myself (which I was, as it was a very self-revealing kind of day), most of that frustration and tension were my own doing. It was a direct result of a bad attitude. Yes, my stresses were and are very real. But I was responding <i>terribly</i> to those stresses. I saw some ugly things in myself that I hadn't noticed before. I got on my knees and poured my heart out, cried some heavy tears, and put up a visual reminder to help adjust my attitude. And I have been trying very hard since then to change that. Sometimes I fail, sometimes I don't. But I am trying.<br />
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With a new year, we all think about our resolutions. I'm not going to pick specific goals, I've never been great at those. I'm going to continue my theme of "let all that you do be done in love." All I have ever, ever wanted in my life was love. Love of husband, love of my children, love of my Savior...seems easy enough. It's no secret that the last few years have been hard for us. It seems like no matter how hard we try to keep our heads above water, something always comes along to try to beat us down. I don't hold in my emotions well, and when that stress gets to me it directly affects this little family of mine because they love me unconditionally. They are quick to forgive me. It dawned on me that they may not always be so quick to forgive and that thought scared me. So I am changing that. And I am going to apply this to all areas of my life.<br />
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Marriage: More love, more compassion, more tenderness, more forgiveness.<br />
Kids: More listening, more nurturing, less irritation, more patience.<br />
Friends: Less talking, more listening, more doing, less needing.<br />
Body: More loving my body as it work it out instead of hating it as I sweat through my frustrations.<br />
Mind: More creating, more challenging, less worrying, less judging, more clarity.<br />
Spiritual: More study, more stillness, more serving, more working, more, more, and more of all the good I know I can do.<br />
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I want to be that person, and I am trying to be that person. For my family especially, I want to be a "face to call home." I want to create a home for them that is a safe place for them when they fall. Where there is no fear, no judgement. Just love and understanding. I want them to know that, and never question it. I want to be the person I know I can be, that I need to be. The person HE wants me to be. And this is the year that precisely that is going to happen. <br />
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So, welcome 2014! Let's do some beautiful things together.<br />
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Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com3tag:blogger.com,1999:blog-2314804954454478028.post-24906010596752114922013-11-23T23:58:00.003-08:002013-11-23T23:58:48.821-08:00Dear Cole,<br />
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It's been a rough week, kiddo. We've both been sick and up all hours of the night, even more than normal. Sometimes, like now, you sit an pull toys off the shelf, examining each one, tasting it, shaking it, hitting it on the floor. You are careful in your inspection of each item, turning it over and over in your hands taking in all the details and find all the cause and effects before you move on. I like this about you. </div>
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You are smart and focused for such a little man. A month ago, you decided to hit a whole bunch of milestone at once. You started sitting, pushing up on all fours, crawling, and pulling up on things in less than a week. It was like you just made up your mind you were going to do just exactly that, and so you just did it. I hope this sticks with you and makes life better for you always.</div>
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Liv calls you Twinkleberry. A variation of the nickname Tankleberry (the name Tank kind of evolved) Aunt Kiki gave you. It sort of suits you. It seems like a Twinkleberry should be an awfully happy thing, and you are definitely happy.</div>
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I think back on your birth often. That hospital room was filled with angels. You made a statement with your arrival, something I can't quite put my finger on. But whatever it is, it fills me with complete joy and I am grateful every single day you are mine and I get to be a part of it.</div>
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I never want you to forget how much you were wanted. I tell you this all the time, hoping that that thought settles into your subconscious and that you always know it. I hope that you always know and remember that Dad and I are your biggest fans. We want you to be happy being you, whether that mean you are a basketball player, a cellist, an artist, a cowboy, or some version of all of the above. We love you for you, and we want you to be brave in whoever that is. </div>
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I hope that I teach you to be kind. I hope that I teach you forgiveness. I hope that I teach you strength, especially in times you may be standing alone. I hope I teach you chivalry. I hope I teach your charity. I hope I teach you to laugh with, not at, others and to laugh at yourself. I hope I teach you love.</div>
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You have stolen my heart, little man. You cannot even imagine. Remember that. Please, remember.</div>
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All my love,</div>
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Mom</div>
Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-59677418042628061912013-10-20T21:06:00.000-07:002013-10-20T21:06:24.094-07:00What I'm LearningOver the last few months, I have had several conversations with various people concerning Olivia mostly concerning her health and chromosome deletion. People have questions, generally lots of them, and most of the time I am more than happy to try to answer the best I can. I want to be open, I want people to understand. I want people to be able to have a conversation about things like this, to better understand people who are "different," so that they can have conversations with <em>their </em>children so that they might grow up to be more kind, understanding, and compassionate people. This world needs more of all of that. <br />
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These conversations I've had have given me a lot to think about. One question I get frequently that I have struggled to answer is "What's it like?" What's it like dealing with a rare chromosome disorder? What's it like not knowing this or that? I've struggled to answer that. Why? Partly because I don't know but at the same time partly because the answer is so consuming that to try to put it into words could very easily cause me to curl up in a ball and cry in the corner. But this, I think, is the answer. These are the things you should know about what it's like for a parent of a child with a chromosome disorder, special needs, chronic illness, and/or developmental delays.</div>
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<strong>1. Looks can be deceiving.</strong></div>
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Mostly Olivia looks "normal." Except for her prosthetic, her chromosome deletion is not at all obvious. Her geneticist, oncologist, and pedatrician and have all commented to me that they can almost always tell when a child has a chromosome abnormality. There are markers and facial features that doctors recognize. Not so with her. Her disabilities are not in-your-face obvious and it takes some getting to know her for certain things and problems to be obvious. Her speech delays, her low muscle tone, her inability to keep up with other kids, her delay in motor skills are not immediately apparent. Therefore, I feel as though I am often trying to explain her, her behavior, why she does certain things, why she can't do some things, why some things are taking longer. It's exhausting. Even with teachers who know her, who know her history have expressed frustration over certain situations when she can't or won't do something because she "looks fine, she acts fine." Inside I'm thinking, "Hey, it's an actual miracle this girl is even WALKING right now. Any attempt at tracing/letter recognition/or complete sentence is just an added bonus as far as I'm concerned." </div>
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Even as her parent, I sometimes forget what I am dealing with and have unrealistic expectations. And I get frustrated. I get frustrated like every other parent. And then I remember. And the guilt that comes with that is overwhelming. And this happens too often.</div>
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<strong>2. "Okay" does not always mean okay.</strong></div>
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One thing many people have said to me and Brandon since Olivia's cancer went into remission is, "Oh, you must be so relieved! It's over!" Well, yeah we're relieved...for that part. But no. It's not over. It is far from over. Liv has a myriad of other issues. Things come in waves. And sometimes, like now, we are in a relatively quiet time for her health. We have a long stretch between major appointments, but even still...her issues will never be over. Never. And furthermore, we will never know exactly what to expect due to the rarity of her chromosome disorder. She will be a question mark her whole life. I've met a handful of other mother's (through Facebook or Instagram) with children with Olivia's same disorder. Not one of them has the same set of problems. They have a few similarities, but they are so different. There is nothing solid that any of us can compare our situations to. So every pain, every complaint, every muscle spasm sends a new wave of anxiety because I just don't know what's coming. I know <em>something </em>is coming, but I don't know what exactly. And I can't even get in to potential emotional traumas she will inevitably have to deal with. So we celebrate every lull in hospital visits, but I am constantly waiting for the other shoe to drop.</div>
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<strong>3. I get angry.</strong></div>
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I have accepted the hand we've been dealt. I do my best to deal with it. But sometimes, late at night, when everyone is in bed and I'm alone with my thoughts, I get angry. And sad. And I cry. I allow myself those days. I still mourn the things that have happened to her, that will happen to her. I mourn the future I envisioned when she was born that I know will never happen. She still has a future, obviously. And there is a lot of sunshine in that future. But still. It's hard to explain, and it's hard to understand. I try not to make sense of it and just try to feel whatever it is I feel in that moment and move on from it.</div>
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<strong>4. I am hyper-sensitive to comparison and competition.</strong></div>
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There are a lot of competitive women out there. Not just physically competitive, but competitive about their husbands, their homes, relationships, and kids. Ah, yes, kids. I think we have all compared our children to other's children at one point or another. We may not realize we are doing it but it happens, unfortunately. Long before we knew about Liv's chromosome disorder, I had her in therapy in our local Infant Toddler program for delays in her motor skills and speech. The comparisons then stung, but I thought then it was only a matter of her "catching up." Now, it's like hot razor blades right to my soul. Most people in my life don't do this or make me feel this way. Most. There have been a handful of individuals in my life the last couple years, people who I have explained my sensitivities to, but for whatever reason, they have felt the need to deliberately compare, brag, and then ask me why MY child isn't doing the same, or ask why I am not concerned she isn't doing something they think she should be. They are deliberately hurtful in the ways the only women can be. Sneaky, and back-handed. Although maybe they feel their honesty is helpful? I don't know. To them, I have slowly, but surely, shut down. I have no interest in maintaining contact with people who make me feel like every hurdle, every trial, and every milestone Olivia has met have not been the complete and total miracles they are. I have zero interest in exposing my child to people who lack compassion, to people that minimize how truly awesome she is. </div>
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<strong>5. There is more joy than I know what to do with.</strong></div>
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Kids with special needs come wired differently. They just do. People are generally drawn to them. There is a fascination. They are unlike anyone you have every met. Olivia is no exception. That girl is pure sunshine and everything good in the world. Everyone should know this kind of happy. It's contagious. And addicting. And it is this kind of joy that makes all the rest of a crappy stuff okay. She teaches me a lot about happiness. Mostly, and most importantly, that its okay to be happy just for the sake of being happy.</div>
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Being the parent of a child with special needs is complicated. I'm glad people ask me hard questions, its good for me to think about these things. Sometimes these situations are hard for people to grasp and understand. I get that. I so, totally get that. But if you want to know what you can do for the parent of a sick child, special needs child, a child with autism, physical disability...Have compassion, teach your children to be kind to these kids and not be scared of them, and not just the kids who have more "obvious" differences. Ask the parent how they are and if they dissolve into tears, let them. Don't assume, don't compete, and don't compare. Being a parent is hard. ANY parent can appreciate that. Let us all listen more, judge less, and love more. It makes everything else so much easier for everyone.</div>
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Oh. And let's all be happy just for the sake of being happy. </div>
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Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com4tag:blogger.com,1999:blog-2314804954454478028.post-48793924645158801942013-10-17T21:46:00.001-07:002013-10-17T21:46:51.798-07:00Confessions: Part 2*I totally wore jeans three days in a row this week. I rewarded myself by wearing sweats all day today!<br />
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*My husband is confused when I tell him that by the end of the day I am done. Like, done done. He isn't totally sure what this means. And I no longer have the strength to explain it to him. Again. But I love him anyway.<br />
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*I've been a little....closed and unpleasant? Yes, that. There has been a whole lot building up underneath for a long time. People and situations who have been making me cringe over and over for a few years now have finally pushed me over the edge. The result? I'm cutting the fat. Cutting it right out of my life. Cause I just don't have the time or space in my brain to deal with them anymore. And I don't like being that way.<br />
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*I don't do competitions. In almost any capacity. Don't ask me please. It makes me extremely uncomfortable.<br />
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*I'm developing some definition in my thigh muscles and I'm pretty darn excited about it.<br />
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*I could really go for a good romantic comedy. There hasn't been one of those in at least forever. And I could really use a few hours alone, in a dark theater, with a bag of popcorn, and just zone out. You know? Just for a little bit. <br />
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*I miss my mom. And my sisters. A whole lot.<br />
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*Most aspects of our business right now are making me want to vomit. Repeatedly. <br />
<br />Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-67496261191523564502013-10-03T22:56:00.000-07:002013-10-03T22:56:05.854-07:00Confessions: Part 1* I am still a hot mess. You know, I've really tried. I've really, really tried the last few weeks to get my crap together. To put myself together, to get things in order, to make myself more presentable at all times. But guess what? Life, my kids, and everything else got in the way. So. I'm still in my yoga pants. Right now. And the last three days.<br />
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* Tonight two options presented themselves. Folding laundry or painting my nails. I chose painting my nails. Naturally.<br />
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* I've had a bag of Carmel Apple Milky Ways in my car all week. They are simultaneously the most disgusting and strangely delicious little things ever. I don't know what to do about that. So they are still in my car. And I'm still eating them.<br />
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*One of my favorite things about Liv being in pre-school right now? Built in nap time for me. Its a habit that needs breaking, which I have every intention of doing once Cole is sleeping better. And not teething. And I'm feeling better. And maybe next week. Or next month.<br />
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* My husband loves Grey's Anatomy as much as I do. <br />
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* Cole's pediatrician picked him up at his well child visit yesterday and immediately declared, "Ohhh, you have a giant baby!" I do. I have a giant baby. And I'm beginning to think giant babies are way more endearing. <br />
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* I am a chronic over-sharer. I'm convinced of it. I speak too much, too open, and too often. I think people need to be open and honest with each other. But I think maybe I take it too far. But I can't shut it off.<br />
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* I read the Wizard of Oz to Olivia and Cole. She was smitten. I then showed her the movie. She fell in love. I cannot tell you how much it pleases me that she loves old movies and musicals. <br />
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* There has been a numerous events over the last few weeks that have affirmed to me that I absolutely, no question married the right person. I am not perfect, neither is he. But he is perfect for me. Holy smokes, God knew what he was doing by putting him in my life. (I knew this a long time ago, but I'm just being reminded in a big way.)<br />
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* I have big plans for tomorrow. I'm pretty sure maybe only a third of them will happen. I'm also pretty sure I'm okay with it.<br />
Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com4tag:blogger.com,1999:blog-2314804954454478028.post-29631239397716471472013-09-25T22:17:00.001-07:002013-09-25T22:17:33.159-07:00It's Okay.<div class="separator" style="clear: both; text-align: center;">
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Yesterday was hard.</div>
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A new quarter of school started for The Husband this week and it's a heavy load. Twenty credits heavy, night classes, long classes. I'm so proud of him. He's on the downward slope of school and he is doing so good and working so hard. But him in school means me helping out more with our business and me doing the nights alone with the kids. Most of the time I can handle it. </div>
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Oh, but this kid. Neither of us has slept well in weeks. He used to sleep 9 to 10 hour stretches and be somewhat on a schedule. But around 4 months old, I don't even know what happened, he just stopped. There's not much routine about this kid. I am pretty severely sleep deprived at this point. Well, add some pretty brutal teething to the mix and it's just ugly. <br />
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The last week has been especially hard. My nerves are raw. I have some new concerns about Olivia consuming me and then there is Cole and his teething that seems to light fire to my tired nerves. When Olivia cut her first teeth she was in the hospital with RSV. I remember that period time as a haze of breathing treatments and hospital smells. But I'm in the thick of it with Cole. Lots of crying and needing to be held from him. I lay him down to sleep only to have him be up an hour later. He wakes up in the night for two or three hours at a time, just wanting to be held. Last night was really bad. At one point I locked myself in the bathroom for a few minutes to just breath. Both Cole and Olivia were sad last night. There was lots of crying, lots of meltdowns, and I need four seconds to breathe. <br />
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After two hours of trying to get Cole to sleep, I laid him down only to have him wake up 20 minutes later completely distraught. I sat and rocked and sang over his cries. Eventually, I gave into my own exhaustion and cried along with him. <br />
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When Brandon walked in door a little after 10 he found not just a sad baby, but a sobbing wife, neither of could be consoled. He scooped up the baby and with a kiss on the forehead he tucked me into bed. He kept Cole most of the night to finally, blessedly, give me some sleep.<br />
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Today has been much of the same, but feeling somewhat more rested I was able to hold onto a bit of sanity. I was able to remember that our lives are messy right now. Good, but messy. And it's okay that its hard. Sometimes I forget that it's okay for things to be hard. I am helping to put my husband through school. I am a working mom. I have two small children, one being a baby, the other with special and sensitive needs that <strike>can be </strike><em>are</em> consuming. <br />
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So today, I slowed down more. I realize that my exhaustion will pass. That teething is not going kill me, that it was just the straw that broke the camels back. So I focused on breathing and loving and calmness. We played more, laughed more, read more books, cuddled longer. I focused on letting them just be little and me just being the mom. I need more of that. I am going to make much, much more of that.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com4tag:blogger.com,1999:blog-2314804954454478028.post-3158543959505519672013-09-17T21:32:00.001-07:002013-09-17T21:32:40.097-07:002 YearsThis week it's been two years since Olivia's cancer diagnosis. <br />
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I think about that and I have to stop and catch my breath. Two years. Was it really that long ago? But also didn't it just happen? The whole thing still causes me a great deal of anxiety. Mostly because I know that the depths of my gratitude to everyone who helped us was and has not been totally felt. Know that if you reached out to us, helped us, donated, supported, prayed for, lit a candle for, hoped for us...we felt it. And we could not have done it without you. <br />
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Last month at her EUA, her doctor's officially declared her cancer free, in complete remission, and she is basically out of the woods for any re-occurrence of retinoblastoma, chances being next to zero of that happening! I held her in post-op and together we offered up a prayer of gratitude. We walked out of the hospital feeling light, happy, and grateful. On the road of this 13q deletion we are on, this has been a long stretch of it. We know, and we were reminded that day, the very strong chance that cancer of some kind will come again. But for now, it's not. And we are ok with that.<br />
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Right now, Liv is back in school. It's a good place for her to be. The structure is good. The support is good. Her therapists are good. Her being in school is hard for me (different reasons, different post) and I'm trying to figure out a balance of what she needs, what's good for her, and what's good for Cole. When we decided to have a second child, I was very conscious of the fact that I never wanted that child to suffer or feel neglected because of Olivia's special circumstances. I haven't figured it out yet. I haven't found that balance. And more often than not I am doing the wrong thing. It seems like there is always some new little "thing" that throws us for a loop with Liv. Something always keeping us slightly off balance. And it's incredibly frustrating. It affects both my children. And sometimes it feels like no one gets it. Is that a horrible thing to say? I don't mean it that way. I have a few friends who understand what I mean, who don't judge, and they know where I'm coming from. And although my husband gets it, he is such a glass half full kind of guy that sometimes it feels like I am the only one seeing what is <em>actually </em>happening and what <em>is </em>going to happen.</div>
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I suppose that's not really the point though. My husband would argue that I just need to step back and deal with today. Enjoy today. Embrace the periods of time when there aren't all these new problems to deal with. Just be in the now. </div>
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I need to do that. I'm trying to do that. This girl. She is so happy. And Cole is just like her. They are such good natured, loving, sweet kids. I'm going to do it. I'm going to focus on today more, unplug more, engage more, absorb more. Brandon and I often feel like our time with her is borrowed. I don't want to regret my time with my kids. Ever. And I'm going to do my best to not worry about that. </div>
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Because life right now? It's pretty darn good.</div>
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Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-18949567107272466232013-09-15T21:33:00.002-07:002013-09-15T21:33:30.382-07:00Confession: I am a hot mess.<br />
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I'm not 100% sure how it happened even. But geez. The last few years have thrown us some pretty substantial loops and apparently the things I used to be somewhat good at I am now not so good at. I can't pinpoint exactly when it happened, but I think it happened somewhere between December 2010 and September 2011. Before that my house was always clean, my makeup always done, things decently organized, I could put together a decent outfit and seem presentable most of the time.<br />
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Now? Now. Well.<br />
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In the interest of full disclosure I haven't done yesterday's dishes, there are at least 7 loads of laundry residing on my bedroom floor waiting to be folded and put away, I went make-up less somewhere in the vicinity of four or five days this week, and the same three pair of yoga pants are making rotations in my normal wardrobe, and I can't seem to get beyond item number 3 to do list I make.<br />
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I mean...I can't even...I don't...Seriously. How? <br />
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It was brought to my attention today just exactly how bad it has got when I came out of my bedroom, hair curled, full face of makeup, and actual jeans. It wasn't anything I thought to be special or amazing, probably how I should look every day. Olivia gasped, "Mudder! You look beautiful! You look so cute! You're like a different mom!"<br />
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Well, ouch. <br />
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Is it really <em>that</em> infrequent that I make myself look decent that when I consider myself merely presentable my 4-year-old thinks I look like a <em>different mom?</em><br />
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How exactly do other mom's do it? I look at my friends and I don't have a single frump among them. I am clearly and obviously the dud. How do you other moms do it? No, really. How? I feel exhausted and overwhelmed so much of the time lately. Maybe it's that baby boy who thinks sleep is for the birds? Or our business that doesn't really let me have a life anyway? Or maybe, just maybe, those are just excuses I'd like to use but really, everyone else seems to have their crap together. So what's wrong with me? Where did I go so wrong that I went from satisfied with myself to hot mess? And it's not even good hot mess. <br />
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I'm not trying to sound all pity party or anything. Cause really, I'm equal parts horrified and oddly amused. My heads in a good place so I'm thinking maybe its time for everything else to fall in line. I can totally handle it. I just need someone to tell me how to do it. <br />
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Anyone? Anyone? Bueller?Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com2tag:blogger.com,1999:blog-2314804954454478028.post-12739386404652906292013-09-07T22:57:00.001-07:002013-09-07T22:57:05.492-07:00Just WordsOkay...so. I disappeared. Again. Sorry about that. But here's the thing.<br />
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I had a baby and then we moved and we worked ridiculous amounts this summer and we bought a house and we were at the hospital and my husband is in school and my baby doesn't sleep and doesn't sleep and never sleeps and...well...<br />
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Basically it just sounds like a bunch of excuses. Which it is. But the truth is, I got a little lost the last few months. No, that's not right. I got swallowed up in some weird personal issues and they ate me alive. The light in me went out for awhile. Call it a funk, call it postpartum depression, call it buyers remorse. The fact of the matter was I was not me. I did a pretty good job of hiding it. Maybe a tiny handful of people around me knew what was happening to me. I couldn't find my way out for awhile and I was so confused by it. The details of it aren't important, really. I had some serious image issues, I've been badly hurt by a few friends the last few months, and my heart so achingly tender. I just felt wounded. Much of the damage I did myself and the rest of the damage was done and I could hardly defend myself.<br />
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Thankfully the clouds have parted and in a moment of clarity I realized I needed to feel that way about myself in order to change. I needed to feel lost so that I could find myself again. I'm painting a little. I'm writing a little. I'm drawing a little. I'm making plans to finish my last year of school. I'm actually doing these things. I somehow became just an observer in my own life. But I'm not going to do that anymore. I'm making changes, things that have been a long time coming. And I feel good. I'm still a little bit lost. But I'm happy. <br />
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I'll be around more. I made a few promises about writing and keeping this up, and I fully intend to keep those promises.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-85710641718845024342013-04-17T22:07:00.000-07:002013-04-17T22:07:09.609-07:00And So It BeginsA couple of weeks ago Olivia and I were sitting on the couch talking about her day when she said to me, "My eyes are creepy."<br />
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"What? Where did you hear that?" I asked, completely horrified.<br />
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"At school," she said.<br />
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My heart didn't just break, it shattered over and over and over. <br />
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I knew this was coming. I knew it. But I didn't know it would so soon, before she even turned four. I figured I had a few more years to remind her how strong, beautiful, smart, and amazing she is and build her confidence before I had to send her off to a school full of strangers who don't know her and don't understand what she has been through. But no. It was from the honest mouth of toddler like her in a school where she isn't the only child needing a little extra support or therapy. <br />
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Thank goodness Olivia's three year old mind doesn't know what "creepy" is, she doesn't understand what that means, and I think was ultimately <span style="background-color: yellow;">not phased</span> by the whole thing. It was me who was bothered by it. It bothered me that it was said, it bothered me that this only the first of many hurtful things that will be said, and it bothered me that her little mind remembered the word "creepy" and that it was used to describe her physical appearance. I can't be upset with the child that said it, as I'm sure it wasn't meant how it came it. Toddlers are awfully honest. But I am still upset.<br />
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I want to be able to say that it doesn't matter, that I shouldn't worry about what a toddler says about her physical appearance because appearance doesn't matter....it's what's on the inside...yeah, yeah I know. We all know that. But how long did it take us to really understand that and apply it in life? But if I'm being honest here, appearance matters and what people say to us about our appearance matters to us when we are young. We remember the things that are said, the jokes that are made at our expense. We remember the damage it does even after we are old enough to not let those things bother us anymore. For awhile, it does matter. And despite my strongest efforts to teach her, help her understand that she is not defined by any illness in her childhood or her lack of a full set of chromosomes, there will be instances where insecurities will creep in, her confidence will waver, and her tender feelings will be hurt. And I can only hope that what I have taught her and tried to instill in her will be more than enough to carry her through those times.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-67975780118737789822013-03-29T22:13:00.003-07:002013-03-29T22:15:27.792-07:00March 18, 2013On Saturday the 16th, Brandon and I sat in the dark of a theater during a late movie. We were trying to squeeze in as many date nights as we could before our little man made his arrival. At nearly 38 weeks pregnant, I was sure that he would be coming soon. I'd been having the signs of labor all week and my body was making progress. At this point it was just a waiting game.<br />
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During the absolute climax of the movie I felt a pop. Then a small gush. I grabbed Brandon's arm and whispered that I thought maybe my water had broke and we booked it to the hospital.<br />
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It was flurry of gathering bags, checking in, changing clothes, tests, checking, and waiting to see if I was, in fact, in labor.<br />
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Well.<br />
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I wasn't. <br />
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The nurse wasn't really sure what had happened. I was so confused. It appeared my water HAD broke. But all signs pointed to no. It was late by this point, defeated and exhausted we headed home to bed.<br />
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Exhausted, the entirety of the next day was spent on the couch with Brandon. Just he and I. Olivia was with my in-laws giving me a much needed break to try and rest. I don't remember the last time we did that, perhaps 7 moves and 2 states ago? It was needed. After Olivia got home that evening, we ate dinner, read stories, did the whole bedtime song and dance. I hadn't had a contraction in hours and resigned to the thought that it probably wouldn't happen that night either. Around ten, as Brandon and I were winding down for bed, I heaved myself out of my chair when, again, I felt a gush. But a really big one. But really, could it be? <br />
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I gasped loudly and waddled quickly to the bathroom, yelling to Brandon, "Okay, I think it really broke this time!" He raced into the bathroom, asking if it really had. "I don't know, I think so? Maybe I will just go to the hospital and if I did, you can drop off Livi to Tasha's and meet me there. No point waking her up if we don't need to."<br />
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"Well...Okay. Are you sure?" He asked as I made my way into the bedroom to put on some clean clothes. And then all doubt about this being "the real thing"escaped....all over the bedroom floor. I did the only reasonable thing I could think of, which was to stand in the bathtub to wait for the liquid to stop while Brandon scrambled to grab our bags, wake Olivia, and load the car. <br />
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Making our way to the hospital, I tried to focus on breathing and keeping calm. Not because the pain, which was nothing at this point, but because the sheer adrenaline of it all. I called my mom, Brandon called his, I text my sisters, and tried to explain the best I could to Olivia what was going on. I was reassuring her just as much as I was myself that all was going to be just fine. <br />
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Brandon took me to the hospital first before taking her to my sister-in-law's house. I'd had anxiety about not getting to the hospital in time for an epidural. My labor with Olivia was so fast that I'd almost missed my chance to get one with her and I most certainly didn't want a repeat. That part of Olivia's labor was a little too traumatizing for me. I needed the epidural and didn't want to miss my window to get it . I squeezed Olivia's foot, blew her kisses, and waddled in. <br />
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The nurses aide wheeled me to labor and delivery, where the nurses from the night before greeted me with a chorus of "Hey, you're back!" and "Is it for real this time?" I laughed, assuring them, there was no question, and within a matter of minutes I was getting set up in my room. I had text a few dear friends and a sister-in-law that had wanted and offered to be there. Brandon arrived a few minutes later with the other's not too far behind. <br />
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I was excited. I had a good group of people I loved and cared about there and there was no shortage of laughter and bantering in the room. The combination of Nichelle, Lee Ann, Sarah, and my husband was a good one. I'd requested the epidural right off the bat. I was far enough dilated that it wasn't a problem and I had no desire to feel the big contractions. So the mood was light-hearted and happy. It was about 3 and a half hours and multiple checks later that I had made absolutely no progress. None. And I was not having any contractions. At all. I told everyone to go home, get some sleep, with promises that I'd text them once I was nearing the end. <br />
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Around 3:00 am, they started pitocin. Brandon passed out on the couch, and I had hoped to sleep a little myself. <br />
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But there in the dark, I lay cradling my belly think about this boy I was about to meet, this little family of mine that Brandon and I had made together. I thought about the significance of it, what we'd been through the last couple of years, and just how big this all was. I began to pray as I lay there. I prayed for this sweet boy who I already knew, my soul recognized his and I knew he was mine from the beginning. I prayed for his safety, for his strength, for his courage. I prayed for me, to be fearless as his mother, for strength, for stability in my life so that he might have it in his. I prayed for Brandon, for our marriage, for the ability to always be what he needed me to be so that he might be what his children need. I prayed for Olivia, for her to have courage, for her to remember how much she is loved. I prayed over and over for love in this family, for the continued love that we have, for new love, for strong, unconditional, protective love. I prayed for two hours for this little family of mine, feeling close to Heaven, and feeling surrounded by nothing but wonderful.<br />
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Between 3:00 and 5:00, the pitocin did it's job beautifully and quickly. So quickly, that I realized very soon that my epidural had not entirely done the job and I began feeling intense waves of pain. Parts of me were immune from the pain while other parts were not. Wave after wave grew stronger and stronger. Brandon was now awake and I called him over. He held me hand talking me through each contraction. It had become too intense and tears poured down my cheeks as I tried to breathe through the pain. The nurse checked me again and I was around a 7 or 8. I was making progress fast. Still crying and now shaking, the notified the anesthesiologist that I was "uncomfortable"and he came back and gave me a bolus of meds to get me through the end. Within five minutes I had relief and I was ready to push. <br />
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The nurses had filed in making preparations, the doctor was getting appropriately attired... They told me it was time. I still felt enough that my body knew what to do. Everyone in the room, encouraged, counted, and coached as my body did what it was mean to. And less than 10 minutes later he was here, his cry a confirmation that it was all okay and that he was ready for me. <br />
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I heard nothing, I saw nothing but him, felt nothing but Brandon holding my hand as they placed him on my chest. And in that moment, Heaven was so close and I felt surrounded by the love of my Savior and of a Father in Heaven who gave me this child, who trusted me not just once, but now twice, with two sweet spirits and the gratitude was more than I could take and my heart burst. Tears flowed freely from me and from my husband. <br />
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'"I'm so happy to see you! I love you, I love you, I love you," I whispered through my sobs as my crying baby lay on my chest.<br />
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Cole Matthew was born at 6:29 am, weighing 8lbs 1 oz and was 21 inches long. He is beautiful, good natured, and strong. He is perfect. Loving is son is so much the same but so vastly different from loving a daughter. But no less beautiful and sacred. I never doubted I could love another child as much as I do Olivia, but I didn't know how much I needed this child. I didn't realizing that something was missing until he came along and made me complete. </div>
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I am in love with this family. So, so, so in love. I am anxious and nervous about how each child will adjust to this life we've been given. I am excited to see how Cole will bless this road we are traveling and how his relationship with Olivia will grow. It was a tricky balance before and I hope that we can do it without either child suffering or feeling neglected. The Spirit was strong at Cole's birth, something confirmed to my by my friends that were there. It felt like a promise, like and encouragment and a reminder of who I need to be and what I am capable of. I know the mother I need to be for them. I just have to remember to pace myself, breathe, and take it one step at a time.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-72034461802402713032013-02-19T22:06:00.000-08:002013-02-19T22:06:57.326-08:00Sick.Oh my gosh, has it been weeks and weeks of illness around here. <br />
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Today is the first day in, sheesh, I don't know...a long time that I maybe feel the tiniest bit caught up on life? That might be an overstatement. But seriously. Liv came down with a bug sometime in late November. And it stayed and stayed, and came and went and came again. Then I got sick. Then The Husband did. Then Liv was still sick and it turned out to be para influenza type C (or B?) which lasts weeks and weeks. But because of her already compromised immune system it just decided to hang on forever. And then for one glorious week we were all healthy!<br />
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And then B got the flu. Then Liv got it. Then I did. Oh boy. I can't remember the last time I was literally to sick to get out of bed. Maybe never? But this flu? It did it. <br />
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And then! It was off to Seattle. Again. (I <em>know</em>.) It was time for another Botox surgery. <br />
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It was mostly the same old song and dance. Except the check-in staff and nurses no longer give us instructions since they see us all the time. They merely passed us our pager with a "you know the drill" and sent us on our way. <br />
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Pre-op. Recovery. Popsicle. Home. That's the drill. BUT! Dr. I mentioned that he <em>may </em>have noticed signs of Olivia's vocal cords gaining some voluntary function! Which could mean less or no Botox surgeries in the future. Awesome? Yes! But. There is always a but. Because of her chromosome disorder there really is no telling. It could be fluke, he just doesn't know. He calls her OliviaEnigma. Cause really, it's true.<br />
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We drove home. Liv was off. Even considering her surgery, she was off. We got home, discovered her temperature was over 103, she was vomiting, and with one phone call to her surgeon and ten minutes later we were in the OR. Too many scary post-surgical symptoms for his liking. <br />
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So. Hours and hours later, after falling asleep with her face in the barf bag....<br />
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and multiple tests and x-rays it was concluded that Olivia had......<br />
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A virus. Seriously. Talk about bad timing for illness to hit. <br />
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But, I think we are all finally on the mend? I think? And can we now please return to our regularly scheduled lives for crying out loud? Or at least until this baby comes?<br />
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Oh, yeah. And there's that. I'm 34 weeks, and this point in pregnancy stews all kinds of emotions and worries. But those are for another night. Very soon.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-50915836662940034012013-01-10T21:15:00.001-08:002013-01-10T21:15:20.198-08:00Liv Update: The Good And The Bad<div class="separator" style="clear: both; text-align: center;">
I'm kind of over Seattle. I'm over the long drive, Snoqualmie Pass in the winter, the cold drizzle of the city. I'm over the traffic, the hotels, the hospital, the money required to see us through these trips. Most of all, I'm over the fact that we have a reason we have to be there all the time. But enough pity party, because after the last few days it has occurred to me that after almost two years we have this whole Seattle charade down to a point where it almost isn't traumatizing? Can it be?</div>
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<b>The Bad</b>: We are now regulars at two hotels. Ew. </div>
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<b>The Good</b>: We are regulars now at two hotels and have now figured out that they provide goody bags not just for the adults, but for the kids, too. Including this super awesome foam pig mask which Livi, of course calls a puppy.</div>
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<b>The Bad:</b> Every single Seattle trip has a hospital involved, likely includes anesthesia, lots of medical equipment, and the nurses and receptionists know us by name because we are there so much. </div>
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<b>The Good</b>: We are now at a point where the anesthesiologist gas mask no longer makes Olivia cry. They give her a mask to gas her puppy and then she happily puts it on herself. (Why does her tolerance of this somehow make it seem sadder to me?) Furthermore, at this particular procedure we were informed that Olivia's eyes are tumor free! Hallelujah! We love this kind of news! </div>
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The Bad: Seattle is wet. </div>
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<b>The Good:</b> There is a lot to keep us occupied. This week? The Seattle Aquarium and Nordstrom (where a group of strangers asked if they could take their picture with me because I'm pregnant. True story.)</div>
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<b>The Bad</b>: Fish. ("I don't like the fishes, mommy.") They are "scary." Seriously? Seriously.</div>
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<b>The Good:</b> The otters and seals (or "water puppies"as Liv called them) totally made up for the large amount of scary fish. </div>
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<b>The Bad</b>: Having a sniffle or cough of any kind in the oncology clinic gets you a face mask and banished to an abandoned hallway while you wait for your appointment.</div>
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<b>The Good</b>: Aunt Kiki is in town and makes wearing masks cool. </div>
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<b>The Bad</b>: Turns out Liv's month-long illness is likely Influenza A or whooping cough (even though she's been vaccinated. What?) We will know tomorrow. So if you've seen us or been around us, we are sorry and if you get sick take it serious!</div>
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<b>The Good:</b> We learned her blood work was good and also that her oncologist was aware of a (very nice) comment on the hospital Facebook page I made about him. It may have involved a comparison to Santa Claus and how much we love both those guys around here. It was awkward. And kind of hilarious.</div>
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We are now home and exhausted. These trips are at least 100% harder pregnant. What isn't harder pregnant, really? Eh. Whatever. The good this week far outweighs the bad.</div>
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<br />Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1tag:blogger.com,1999:blog-2314804954454478028.post-69996663098496625622013-01-04T23:18:00.000-08:002013-01-04T23:18:08.845-08:00Welcome, 2013It's late and quiet for a little while since The Husband is working. Every few minutes I get a little reminder from a foot or an elbow inside my tummy that all is well with our little guy and that his arrival is soon coming. New Year's came and it suddenly became very real that I am having this baby <em>this</em> year. <br />
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Ah, yes...2013 is looking to be very promising. We talked the other night about all the things that are happening or going to happen this year, how we are feeling blessed, how we are on the right track to be better and do better (in literally almost every way) than we did the year before. And you know what? It feels really, really good. <br />
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This last year ended and for the first time in three years, I did not heave a huge sigh of relief that it was behind me. I didn't re-live the bad things that happened, hoping for something<em>, anything</em>, better to happen in the new year. I wasn't still stunned from all the things that had happened, I wasn't still trying to recover from specific trials and difficulties in our lives. That isn't to say that there has been an absence of difficulty in our lives, but for the first time in 3 years I realized I am okay. No, not just okay. I am really good. We, this little family unit of mine, we are <em>good.</em><br />
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I feel like those things that haunt me, those demons I fight, the issues I have that are unresolved are still there. But I feel better armed, better prepared to tackle them than I have in a long time. I feel that the issues we are bound to face this year will be met with solid ground beneath us, with calm and assurance, with confidence. I am beginning to feel more courage when it comes to facing fears I hardly dare to talk about. Í am more in the habit of living in the now, more aware of myself as a wife and as a mother. I am more aware of what I want and what I need and what hard work is required to get me there. <br />
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Oh, the work. There is much of it to be done. So much. I am so flawed. But I have a good man by my side. And he can push me, and I can push him with all the love we can muster. We can work, pray, forgive, love, laugh, and just be happy. <br />
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This year holds good things for us. I can feel it. Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-37753760798597186472012-12-19T21:45:00.000-08:002012-12-19T21:45:08.013-08:00...<div align="center">
Last Friday twenty-six people, 20 of them children, lost their lives in Newton, CT. </div>
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I have been avoiding media coverage for the most part. I've been walking an emotional tightrope this week and have hardly been able to face the horror with all my other fears and thoughts swirling around inside my mind.</div>
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But then tonight, in the quiet I feel compelled to face it. I watched clip after clip of footage and suddenly the earth cracked and my heart broke all over the floor and I've hardly been able to pull myself together. </div>
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All those people. All those who witnessed it. All those the shooter left behind to absorb his damage. All those babies. Oh, those babies. </div>
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And my heart? It aches. It aches for the victims, both those that died and those that survived. It aches for the parents. It aches for the police officers, the emergency response teams, the hospital works. It aches for the questions that children will ask about this, for the mentally ill, for the gun laws, for the emotionally damaged. It aches for the teachers, for the siblings. It aches for everything and everyone that was somehow witness or part of this tragedy.</div>
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I'm fighting the fear every other parent in the country is fighting, too. It feels like someone threw a box of matches on the flame of all those fears built up inside me and I am on fire with all the injustices of the world with scarcely a thing I can do about it.</div>
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I feel so helpless. </div>
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Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com0tag:blogger.com,1999:blog-2314804954454478028.post-92107337121219420552012-12-08T21:26:00.001-08:002012-12-08T21:26:30.511-08:00On Having Babies<div class="separator" style="clear: both; text-align: left;">
Let's talk about this belly right here.</div>
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This was yesterday at 23 weeks and some change. I am reminded constantly by the movements of this little man that my body is not my own. I'm starting to feel big all over despite my best efforts. I hate this feeling but at the same time I love it and am so deeply grateful for it. It has been a long and complicated road even getting to this point so there is no way I couldn't be grateful.<br />
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Over a year ago, before we decided to start trying for another baby, Olivia's social worker expressed to me her very strong opinion about how The Husband and I shouldn't have any more children because it would "just be too much" with everything else Olivia has going on medically. I sat there a little stunned that someone who hardly knew me could be so opinionated about something that was, quite frankly, none of her business. <br />
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It wasn't the first time comments like this had been made, and it wouldn't be the last. It's frustrating, to say the least. And while the love and enthusiasm for our news has been amazing, I understand the concern. It makes things a bit more complicated when you have a child with an extremely rare disorder. I get it. I, probably more than anyone, had intense fear about having more children. And let me assure you, this decision was not a light-hearted one. Prayer after prayer after prayer was said, we talked about it for hours and hours, we prayed some more, we fasted, we had some genetic testing done, we prayed again. We received the same answer over and over again, it never changed or varied. The Husband was steady and sure in his answer from the beginning. It was me who needed time and faith to make me comfortable with what I already knew. <br />
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It was about a month after The Husband and I had genetic testing done last winter that we got the news that neither he or I were carriers of the gene mutation. Our odds of having another child with the same disorder are only very slightly elevated above what they were before (which is only about 1%). They are odds I am more than comfortable with and strangely I am more relaxed and at ease with this pregnancy than I would have thought. We are at a point where we know what to expect with Olivia, we know what her treatments and surgeries are like for the foreseeable future, we feel like we have sure footing in life. <br />
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I have a fierce case of <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001408/">PCOS</a>. So for me, getting and then <em>staying</em> pregnant has been hard this time around. I found out I was pregnant in July. Up to that point, there had been a lot of tears shed over fertility issues and the babies that were there and then suddenly weren't anymore. So I am grateful every single day that this one stuck. We only found out a few weeks ago that we are expecting a little boy. Olivia has been saying it was her brother since the beginning. Of course, she was right. Of course she was. We could not be more thrilled.<br />
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The truth is Olivia deserves a sibling. She deserves to be a sister. There are truths about Olivia's future that I won't talk about with anyone but my husband. I won't. And I feel that it is not my place to deny her an experience like this. Nor is it my place to deny any family member, present or future, the right to know Olivia. To know Olivia is to know that she is special. Not just "she's my kid and I love her" special. She is truly, know it in your bones, will change your life, special. She has a lot to teach this little brother.<br />
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Life, though complicated, is good for us right now. I can say that and mean it with my whole heart. It's imperfect and we are trying our best, but we are happy. We are bringing a baby into a happy and loving home with happy and loving parents. We are capable of handling the worst of situations. We don't fear the worst because we already know we can survive the unimaginable. We are good parents. We are. I know this. And I can think of no better situation to bring a child into than one like this.Juliehttp://www.blogger.com/profile/08938838915333469310noreply@blogger.com1