tag:blogger.com,1999:blog-3743344820587579032024-02-06T22:03:11.135-05:00Savory SensationsHi, Hub!
Byou bmake bme blaugh :)Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.comBlogger553125tag:blogger.com,1999:blog-374334482058757903.post-21029683185305051942013-07-29T07:12:00.001-04:002013-07-29T07:12:09.329-04:00Yoga girlThanks to some new friends, Livi did yoga yesterday! She's done it before watching Amelia at home. I was just amazed at how well she was able to follow along with the instructor yesterday. We had an impromptu yoga session in a neighbor's back yard. <br />
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com2tag:blogger.com,1999:blog-374334482058757903.post-90201220793967329552013-07-29T06:17:00.000-04:002013-07-29T06:21:00.029-04:00SequestrationThere's been a lot of <a href="http://uspolitics.about.com/od/thefederalbudget/a/Whose-Idea-Was-Sequestration.htm" rel="nofollow" target="_blank">political debate</a> over when and where the idea of sequester originated, and whose idea it was to begin with. There's even some debate and finger pointing over <a href="http://www.whitehouse.gov/issues/sequester" rel="nofollow" target="_blank">who it will affect and how</a>. There's been some attempts to <a href="http://nationalpriorities.org/en/whats-new/2013/4/30/sequestrations-havoc-hits-home/?gclid=CLDwuLep1LgCFWQV7AodKjQAqw" rel="nofollow" target="_blank">reasonably explain the budget process</a> and policy to the average American. <br />
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While military families have varied opinions on this issue, one thing that doesn't seem up for debate is the feeling that military families, along with citizens who are the poorest and the least able to recover from the cuts, have become pawns in a huge game of chess. <br />
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While I try to understand the big picture, on a personal level it feels like betrayal. It's not just myself that feels this way - I've heard it over and over again from my friends and the families around us. I especially heard it during the Fourth of July week, as major celebrations for that day were canceled. I'm not going to debate the pros and cons of the cancellation... but I need to say that on a personal level it hurts and once again feels like patriotism is slowly ebbing away. Our spouses and families go through so much. We do not take this time to celebrate our freedom and liberty for granted. It's not just another day off work for us. <br />
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We have so little choice in so much of what happens to us on a large scale... where we move, what schools our kids have to choose from, the fact that the waiting list for services grows at every duty station we go to, careers going by the way side from move to move, and much more. It feels as if military families are the first on the list for any cuts that happen... and the general discontent with military and government spending gets trickled down to services rendered to families. It doesn't feel like Congress took their job seriously enough to swallow their pride and work together, and that we aren't quite "real" to many of them. <br />
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Taken one incident at a time, one small furlough day off here and there, it seems silly to be complaining that the commissary is closed one extra day of the week, or that you couldn't get your child into child care on base due to cuts in hours, or that you have to wait an extra week to get a base pass because the only day you could go was the day and time they were closed. <br />
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Adding up all these tiny incidents becomes a little bit like Chinese water torture for a military family, especially one whose spouse is deployed. <br />
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A FRO for one of the services has been preparing her families for what lies ahead: <br />
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<b style="background-color: #cccccc;">"M<span style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">any of the staff at marine and Family Services are impacted. I can see a day coming soon where I get contacted by a spouse. I refer her to M&FS for resume writing, or a personal financial counseling, and she later tells me she has to wait a long time to get an appointment or a response back from the office because they are short-staffed. That leads to the snow-ball effect of longer waits, a build-up of frustration, loss of faith with family programs. That's the sad part. I'm already prepared to warn them to take the lag time into consideration, be patient, and WRITE THEIR CONGRESSMEN a letter with the extra leave time....</span><span style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">I think it's natural that there is furlough and probably even civilians losing their jobs since I figure more were hired to support the surge of more servicemen - for USMC and Army. But as those levels drop, so will the need for family support. I suspect the support will be cut before levels get to where they are needed....</span><span style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.727272033691406px; line-height: 15.454545021057129px;">Marines with family members employed by fed govt cutting out personal expenses due to income loss. That's what I can anticipate but that's a really small population. It's early yet but you know the impact is coming."</span></b></blockquote>
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On a more personal level, my own experience with the furlough has been to increase my sense of frustration and anger as I go through this deployment. I see families around me experiencing the same. <br />
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Mondays are normally my grocery shopping day, with sometimes just one appointment for my daughter. It's been a trial to get used to the new day off and wait until the weekend again to get fresh milk and produce. I went tonight (Sunday) and the shelves were bare. <br />
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I teach an EFMP cooking class on Tuesday and typically buy the food at the commissary to be reimbursed. With Mondays being furlough days, I will either have to go out in town, or change the class date - which might be difficult considering all else that the EFMP has on their calendar. Most likely, the future classes will be canceled all together, as the expenses for groceries out in town are quite a bit higher and quite possibly not in the budget. It's a discussion we will need to have this week. <br />
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I spent two months trying to get a schedule in place for ESY (extended school year) for my EFMP daughter. I emailed everyone I could think of to try and set the schedule ahead of time. The week prior to school starting (the week of July 4), I still had no schedule in hand. On that Monday, I went to see our SPED coordinator to see if we could come up with some solutions to the situation. On Tuesday, I was called by the class teacher to set up a schedule, which added to my confusion, since I had been told she would NOT have any class time, only speech therapy. The teacher was equally confused, and promised to get the Speech Therapist in contact with me.<br />
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By the time the ST contacted me, she told me that there were only 2 spots left available for my daughter on her schedule - even though I had signed a contract with the school stating that I would not leave for the summer during ESY session and commit to taking her every day, for 5 days a week. I emailed the SPED guy again about the issue, with no response. The speech therapist had no other options available for me, and the days rolled on. I contacted a local speech therapist and paid for a session of speech therapy on Tuesday evening to the tune of $75, and made arrangements for my daughter to get the other 3 days of week the school wouldn't provide for speech at a therapy place out in town at my own expense. <br />
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By Monday morning, I still had not heard from anyone.<br />
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By this time, I was furious at the lack of response and decided to make my own schedule for my child, who deserved to be in school and getting all the help she could possibly have to progress. Although it was probably not the most tactful thing to do, I showed up at school, announced her name and that since I had not received a schedule for the contracted 5 days a week after numerous attempts, I was creating my own schedule until I heard otherwise and dropping her off. <br />
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The next day, I heard from the SPED guy. As it turns out, he was on furlough. There was nothing he could do about it. His email and phone were monitored, and they were told they could potentially get fired for violating a furlough day by working during it. That, in combination with it being a holiday week, made for an explosive situation that could have been avoided.<br />
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I know there is a draw down. I know that some services will be cut as the need for them is cut. However, many services are being cut that are still vitally necessary to families, many of them in crisis and with spouses still deploying. This incremental stress can potentially lead to stress for the smallest and most vulnerable of military families - the children. As parents increasingly become stressed, there's a trickle down effect in families as well. I wouldn't necessarily recommend my method for handling the situation, but the level of rage and anger I felt had been building and building by what feels like being <a href="http://www.thefreedictionary.com/nickel-and-dimed" rel="nofollow" target="_blank">"nickel and dimed"</a> by the very systems in place designed to help military families under stress. <br />
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<b>Follow Blue Star Families on <a href="https://www.facebook.com/BlueStarFamilies" rel="nofollow" target="_blank">Facebook</a>, <a href="http://www.twitter.com/bluestarfamily" rel="nofollow" target="_blank">Twitter</a> and <a href="https://plus.google.com/u/0/b/101801285362617672361/101801285362617672361/posts" rel="nofollow" target="_blank">Google+</a> and build a support network so you can keep your family and personal community strong throughout the duration of the entire deployment life cycle. </b><br />
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-65662440545573956742013-07-22T06:25:00.000-04:002013-07-22T06:25:37.984-04:00Everyone ServesAbout a month ago, I was asked to contribute to a blog project by <a href="http://www.bluestarfam.org/about" target="_blank">Blue Star Families</a>.The mission of the Blue Star Families is to support, connect and empower military families.<br />
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<b style="background-color: #cccccc;"><span style="font-family: Cambria; font-size: 16px;"> </span><span style="font-family: Cambria; font-size: 16px;">"</span><span style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;">Blue Star Families is a non-partisan, non-profit organization, created by real military families. We are committed to </span><i style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;">supporting</i><span style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;"> one another through the unique challenges of military service and asking the larger civilian population to help as well, </span><i style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;">connecting</i><span style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;"> military families regardless of rank, branch of service or physical location, and </span><i style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;">empowering</i><span style="color: #5e5e5e; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 18px;"> military family members to create the best personal and family life possible for themselves."</span></b></blockquote>
They are gaining momentum in this area, and two of my favorite programs they have created are <a href="http://www.bluestarfam.org/Programs/Blue_Star_Museums" target="_blank">Blue Star Museums</a> and <a href="http://www.bluestarfam.org/Programs/Blue_Star_Theatres" target="_blank">Blue Star Theatres</a>. You can find the rest of their programs <a href="http://www.bluestarfam.org/Programs" rel="nofollow" target="_blank">here</a>. I encourage you to give it a look - there are some great opportunities for families. When we lived in Parris Island, it was a treat to go to the events at the Art Council over the summer for free.<br />
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They are hosting a blog series called <a href="http://www.bluestarfam.org/blog/Everyone_Serves" rel="nofollow" target="_blank">Everyone Serves</a>, featuring the personal stories of several military family members experiencing different stages of deployment and reintegration. The series will run from July to November, finishing up just in time for our family to welcome Rafe home. This will by my introductory post for those joining us from <a href="http://www.bluestarfam.org/" rel="nofollow" target="_blank">BSF</a> who aren't already familiar with our story. <br />
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I'm a bit late to the party - it's PCS season and although we didn't have to move this year, nearly everyone around us did. Literally 8 houses that surrounded us, all filled with children Mia played with, have moved out in the last 4 weeks. In addition, we've had new families move in all up and down our street and we're in the throes of summer time activities. I've hosted farewell dinners, made breakfasts, watched children, picked up groceries, shuttled double the amount of kids to VBS, hosted a family in my home when their move went awry, run errands (I've discovered that 8 feet long 2x4's will fit in my van if I'm oh-so-careful), and welcomed new families into the neighborhood with some fresh Texas style salsa and chips. That would be on top of the normal deployed spouse obligations and activities with my own family and our therapy regimens for Livi. I'll catch up on the blog topics in the next week so that I'm on track with the other 4 bloggers by the time next week rolls around. <br />
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It's now 0615. I've been up all night working on things I could not work on during the day, so I will leave you with the bio from the Blue Star Families website and round out the picture of our deployment history tomorrow night. <br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Laurie is married to a Marine who began his 5th deployment in 6 years last fall, and his second year long deployment. His absences in the past (now 7) years have included special schools and TAD's on top of the IA billets, MEU deployment, regular unit deployments and a weekend or two on his own recognizance. They have 2 beautiful young daughters; one born during deployment and the second born 3.5 months early, almost 6 weeks after he returned from yet another deployment. Their oldest child is one amazing nature girl who loves to build and create with any material she can get her hands on. Their youngest child has a contagious laugh, Prader-Willi syndrome, high functioning autism, speech apraxia and a few other medical quirks.</span> </blockquote>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"> As a former professional Chef, Laurie gives back to the EFMP community that originally gave so much to support her family by teaching cooking classes to EFMP families where ever her family is stationed with a special emphasis on the unique challenges that special needs families face. She helps admin a recipe page for PWS parents, contributes to support pages for PWS, and regularly teaches cooking classes with children, friends, and her local community. She blogs at http://www.savorysolutions.blogspot.com/ so that her husband can see what she and the kids are up to, and sometimes what's for dinner.</span></blockquote>
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<b>Follow Blue Star Families on <a href="https://www.facebook.com/BlueStarFamilies" rel="nofollow" target="_blank">Facebook</a>, <a href="http://www.twitter.com/bluestarfamily" rel="nofollow" target="_blank">Twitter</a> and <a href="https://plus.google.com/u/0/b/101801285362617672361/101801285362617672361/posts" rel="nofollow" target="_blank">Google+</a> and build a support network so you can keep your family and personal community strong throughout the duration of the entire deployment life cycle. </b> </div>
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-3856597228667687202013-07-04T03:25:00.000-04:002013-07-04T04:25:10.811-04:00Egg Dealer<span style="background-color: #cccccc;"><span style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.800000190734863px; line-height: 13.600000381469727px;">No one can say I don't know how to multi-task. I had to take Amelia back to the eye doctor yesterday (fourth time in 11 days). I swung into the parking lot, saw my favorite egg lady, rushed inside to sign Amelia in and </span><a data-hovercard="/ajax/hovercard/user.php?id=100001055928553&extragetparams=%7B%22directed_target_id%22%3A0%7D" href="https://www.facebook.com/jo.rutherford.397?directed_target_id=0" style="cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.800000190734863px; line-height: 13.600000381469727px; text-decoration: none;">Jo</a><span style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 12.800000190734863px; line-height: 13.600000381469727px;"> followed me in to deliver my eggs. I bet the receptionist thought I was crazy. But it was the only time I had to pick up my eggs! A mom's gotta do what a mom's gotta do!</span></span><br />
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<span style="color: #333333; font-family: lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 12.800000190734863px; line-height: 13.600000381469727px;">I sort of feel like this was a slow day. No therapy today, only one doctor appointment for Mia, one (different doctor) office visit for paperwork, one negotiation with school for speech therapy appointments and only one email sent to to someone higher to fix a problem on a lower level. Easy! Just cleaning and kids to round the day out. Oh, and a dinner guest. :)</span></span>Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-70396186717250967282013-07-04T03:14:00.000-04:002013-07-04T04:04:45.655-04:00PWS parents only - Apraxia LinksKaufman materials review:<br />
<a href="http://testyyettrying.blogspot.com/2011/06/apraxia-therapy-materials-kaufman.html" rel="nofollow" target="_blank">http://testyyettrying.blogspot.com/2011/06/apraxia-therapy-materials-kaufman.html</a><br />
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Download/Print FREE speech articulation materials:<br />
<a href="http://testyyettrying.blogspot.com/p/downloadprint-free-speech-articulation.html" rel="nofollow" target="_blank">http://testyyettrying.blogspot.com/p/downloadprint-free-speech-articulation.html</a><br />
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DIY Apraxia cards:<br />
<a href="http://erikalapean.blogspot.com/2013/02/diy-kaufman-apraxia-cards.html" rel="nofollow" target="_blank">http://erikalapean.blogspot.com/2013/02/diy-kaufman-apraxia-cards.html</a><br />
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More DIY Apraxia cards:<br />
<a href="http://jakes-journey-apraxia.com/2012/05/30/diy-apraxia-flash-cards/" rel="nofollow" target="_blank">http://jakes-journey-apraxia.com/2012/05/30/diy-apraxia-flash-cards/</a><br />
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Speech Praxis Kit NOTE!!! I have not tried this site yet and not sure it works or is even legitimate. But I'm posting it so I can remember to check it out. <br />
<a href="http://www.gobookee.net/kaufman-speech-praxis-kit-1/" rel="nofollow" target="_blank">http://www.gobookee.net/kaufman-speech-praxis-kit-1/</a><br />
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<a href="http://www.aaclanguagelab.com/stages/1" rel="nofollow" target="_blank">Stages of language and resource/lesson plans</a><br />
Prentke RomichLauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-19563492859749301372013-07-03T07:29:00.000-04:002013-07-03T07:30:57.002-04:00Fourth of JulySince the sequestration put the kibbosh on any fireworks on Camp Lejeune, we've been looking for other things to do in the area over the holiday. My motto is "If it's free, it's for me!". I took the girls to a free concert given by the Marine Corps band at the base theater yesterday and they loved it. Olivia especially had a good time, shouting out "WOW!!" and clapping her hands and trying to yell "OORAH" or just yell in general when she heard others do it. <div>
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I always find it both touching and hilarious when I see the Marine Corp Band, in any venue. They are extremely disciplined, march on/off in perfect unison, and every move is coordinated precisely to match. Every concert starts with the National Anthem and we stand with our right hand over our hearts and the Marines in the audience standing stiffly at attention (both in and out of uniform) - not any different than when any other movie starts in the theater as well. You can always tell the former Marines - no matter the age, they also stand stiffly at attention with their hands at their sides. Sometimes I find myself surprised at who stood - a few have been shaggy, long hair, earrings and grungy attire - but it's interesting that the pride in being a Marine has never left them. </div>
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So when I hear rock and roll music coming from uniformed Marines who are controlling their every impulse to let loose and dance across the stage, I watch closely to see if one of them will let loose and wiggle a hip just a little. I live in hope that one of them will break down and gyrate across the stage in dress blues. Yesterday I finally got a thrill when they started singing and rocked back and forth just a little. I think I even saw a head shake. </div>
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There was a wry comment that it wouldn't be Fourth of July without fireworks, but due to the sequestration they were going to scale back and show us some fireworks. It's what Marines do best - adapt, improvise and overcome. We were treated to a full scale show of bombing runs on the big screen behind the band as they played on. BIG fireworks! I couldn't help thinking how well this would probably NOT go over in the civilian world and how glad I am that I was there on base and not out in town. I don't think war is glorious, but I think what we do is essential. For anyone who thinks that the military is useless and not necessary; I like to suggest that they first work toward getting rid of their local town's police force and then move on up to the county and state; then the National Guard. Because they are all doing the same job, just on a different scale. If someone truly believes that we don't need the military, then they must also believe that people in the United States are all honest and good and will police themselves without any outside help. I've never found a taker for that argument yet.</div>
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My favorite moment of the concert came when they dedicated Philip Phillips song "Home" to all the spouses that create a home for them where ever they have to go, often with very little notice. As they sang, I heard it as an acknowledgement of what we feel as we create homes for our husbands and children (and in some cases wives and children); and a poignant reference to PTSD, TBI and other injuries plaguing our community. </div>
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Songwriters: GREG HOLDEN, ANDREW PEARSON</div>
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Hold on, to me as we go<br /><i>As we roll down this unfamiliar road<br />And although this wave is stringing us along<br />Just know you're not alone<br />Cause I'm going to make this place your home<br /><br /><b>Settle down, it'll all be clear</b><br /><b>Don't pay no mind to the demons</b><br /><b>They fill you with fear</b><br /><b>The trouble it might drag you down</b><br /><b>If you get lost, you can always be found</b><br /><br /><b>Just know you're not alone</b><br /><b>Cause I'm going to make this place your home</b><br /><br />Settle down, it'll all be clear<br />Don't pay no mind to the demons<br />They fill you with fear<br />The trouble it might drag you down<br />If you get lost, you can always be found<br /><br />Just know you're not alone<br />Cause I'm going to make this place your home</i></div>
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-57699919262218451422013-06-14T02:25:00.001-04:002013-06-14T02:27:41.569-04:00Spa NightSpa Night began as a simple night of me putting finger nail polish on Amelia's nails, and has evolved to a much more elaborate date night with my oldest. Mostly with her additions. I love it when she asks me for a spa night, because I also hear in her heart that she's asking to spend some one on one time with Mommy. I see many of these nights in our future :) <br />
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We had a great time last night with it. These days Spa Night takes hours. We started at 5pm, with a hot bath, coconut oiled hair, braided hair, massage with scented lotion, and dinner. After dinner, out to the exchange to smell candles, cologne, perfumes, look at jewelry and toys. We topped it off by sitting on all the furniture to see how it felt. She could have kept on going all night except that the Exchange closed at 9. We headed home, put on some Shaun the Sheep and sat there snuggled on the couch giggling while I painted her fingernails pink with glitter. I love my little six year old! </div>
Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com1tag:blogger.com,1999:blog-374334482058757903.post-62552944931670631462012-12-03T00:34:00.002-05:002012-12-03T00:34:59.883-05:00Lamb SoupI had some leftover roasted lamb from the other day so I wanted to make it into some soup. Turned out delicious, if a bit spicy. Looks like my dad will be eating this one ;)<br />
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<b><u>Lamb Soup</u></b></div>
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Equal amounts of chopped celery, carrots, onions - approximately 2-3 cups each</div>
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minced fresh sage</div>
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minced fresh rosemary</div>
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1/2 bulb garlic, minced</div>
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approx 4 cups of diced lamb</div>
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4 cups red potatoes, chopped</div>
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3 tomatoes, chopped</div>
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bone broth from previously made stock and saved broth from roasts</div>
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1 bunch of kale, chopped</div>
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Siracha sauce, kosher salt</div>
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Saute the mirepoix and garlic in a bit of bacon fat for a few minutes and then add the sage and rosemary. Saute for a few more minutes and then add the remaining ingredients, minus the kale, and simmer till potatoes are tender. While soup is simmering, add a bit of freshly cracked pepper and kosher salt. Toss in the kale at the end and wilt; add siracha sauce to taste. I accidentally overdosed the sauce and it's still delicious, but too hot for my tastebuds! Thicken with a cornstarch slurry if you like it a bit thicker; or leave it brothy. </div>
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I made a white bean soup as well with the seasonings of anise, thyme and bay leaf. </div>
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-37817696550055848192012-12-02T01:36:00.001-05:002012-12-02T01:37:40.543-05:00ConnectedYesterday Amelia woke at 445 from what she later told me was a bad dream. She didn't cry or whimper, but she told me that she wanted to turn the lights on and get up. She wouldn't tell me the dream... actually, she refused. She said she didn't want to talk about it so the details would not stick in her mind. So, up at 5am we were.<br />
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Off and on all that morning and afternoon, Amelia would mention how she didn't like the lights in the house, the open doors, the curtains not being drawn on the windows, the bedclothes. She was extremely clingy - literally not letting me out of her sight and most of the time walking a step beside or behind me, holding on to my clothing. It made it a very difficult day to accomplish much. She was very, very anxious and fearful in general. I finally asked her if she would like to talk to Martha, a friend of the family and a retired family therapist who specialized in childhood trauma. She was obviously relieved and said she would talk to Martha. We tried calling, but she wasn't there, so we went to bed. <br />
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I can not emphasize enough how unusual this behavior was for Amelia, especially in light of how well she has been doing since this move. <br />
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Today we were fixing a late breakfast, and she asked me what time it was where Daddy was at. I told her, and she said he was getting ready to go to bed. I mentioned that he was probably still at work because he would be working late nights, and she told me again he was going to bed. <br />
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5 minutes later, Rafe called. He told me he was on his way to bed, had gotten about halfway down the hall and decided to turn around and come back. He mentioned how odd that was for him because he usually doesn't change his course of action to go back and make a phone call; he normally would have just made it the next day. I asked him when he thought of turning back... it was 5 minutes prior. We chitchatted about how ironic that was, the day, how the kids were doing, and he talked with everyone. At the very end, I casually mentioned what happened to Amelia the day before. <br />
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Silence.<br />
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"Laurie, what time did you say she woke up?"<br />
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After doing a bit of logistics, he is silent again. Then he hits me with this:<br />
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"At that time yesterday I was in the heart of an area known for XX strikes. The recent group just before us was attacked and our vehicle had bullet holes in the windshield. The night before I left for that place, I audio recorded a message to you and the kids. Just in case. I was there the whole time she was uneasy."<br />
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Next time Amelia is that anxious and uneasy, I'm stopping everything and praying for his safety. And I told her that the lights she saw were Angel lights, telling her they were watching over Daddy.Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com2tag:blogger.com,1999:blog-374334482058757903.post-32292608266696715672012-11-26T00:31:00.000-05:002012-11-26T00:31:07.565-05:00Rafe's girls<div class="separator" style="clear: both; text-align: center;">
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-12669561162541342442012-11-26T00:05:00.002-05:002012-11-26T00:06:02.643-05:00Black Bean Soup and Cranberry Scones<div class="separator" style="clear: both; text-align: left;">
2 lbs of black beans, soaked 24 hours</div>
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1/3 cup bacon fat</div>
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6 sm. to med. onions, diced</div>
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1 bunch celery, diced</div>
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equal amount of carrots, diced</div>
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3 bay leaves</div>
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2 tsp chile powder</div>
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2 tsp annato, ground</div>
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2 tsp ground thyme</div>
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1-2 tbsp ground cumin</div>
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1/2 lb. diced ham</div>
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several swirls of molasses</div>
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6 cubes chipotle bouillon </div>
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home made chicken stock</div>
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canned chicken stock</div>
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juice and fat from breakfast sausage</div>
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Cook till tender and mash with a blender in the pot. Served with cornbread muffins and garnish with cilantro, cheese and greek yogurt. The amounts are approximate on most items...I didn't really measure. The soup didn't need salt or pepper because of the salt from the other ingredients. The molasses really mellowed the soup; I blended it in the pot with a hand blender when it was finished. </div>
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Amelia and her little friends making cranberry scone dough with me. </div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-522269130758615502012-11-25T23:51:00.001-05:002012-11-25T23:51:51.823-05:00Olivia's Morning Chores<div class="separator" style="clear: both; text-align: center;">
Olivia is one of my best little helpers. She loves being useful around the house and doing chores. She also helps with laundry and cleaning up her toys. </div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com1tag:blogger.com,1999:blog-374334482058757903.post-55132850505666408592012-11-25T23:43:00.001-05:002012-11-25T23:43:36.306-05:00Amelia's first fried egg<div class="separator" style="clear: both; text-align: left;">
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Amelia wanted to make her own breakfast yesterday, so we had a lesson on fried eggs. I like mine </div>
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without the browned edges, but she knew what she wanted and went for it! <span style="text-align: center;">She says she likes the face her eggs made. So proud of my little 6 year old chef!</span></div>
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-82002864368869512232012-11-25T23:27:00.003-05:002012-11-25T23:28:06.148-05:00Imagine my surprise... <div class="separator" style="clear: both; text-align: center;">
to walk into the living room and see this: </div>
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I never thought when I had a girl that I would have a house full of rocks, leaves, dirt, clay, sticks, bugs and lizards, and jeans with holes in them after only a few months. She found this outside and brought it in. Just left it laying around. Niiiiiiiiice. I love my nature girl, but this will take some getting used to! Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-27375165838883085032012-11-25T23:22:00.001-05:002012-11-25T23:23:33.900-05:00"UH OH! OOOOPSIE!"<div class="separator" style="clear: both; text-align: center;">
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I was in another room and heard Olivia say very distinctly, "UH OH!!! OOOOPSIE!" I laughed to myself, thinking how clear and cute it sounded, so appropriate, as if she had done something wrong..... oh... wait, where is she?! So I went and had a look at what she was doing. </div>
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Dad was painting the downstairs bathroom for me and Olivia was diligently watching him all day. She managed to contain herself until almost the end of the night. She snagged one of Amelia's pencils and decided to climb on top of the ladder and do a little decorating herself. </div>
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Looks like we'll be repainting again. </div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-45818458583822557382012-11-23T03:14:00.001-05:002012-11-23T03:16:52.692-05:00Bundle of Energy<div class="separator" style="clear: both; text-align: left;">
I took these videos the night Rafe left for deployment. We sat around the fire all day escaping from the cold and wet rain outside. Looking at Olivia running around made me think of how much I wished I had seen a video like this when she was born. I could not have imagined at that time how much she would be able to do. Not only was she born with Prader-Willi Syndrome, but the additional birth trauma left her so motionless for so long that it was a celebration if she just turned her own head. Now sometimes I can't catch her if she decides to run around the "loop" of the kitchen/dining room/livingroom/hall of the house! </div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-74362230076242406032012-11-23T02:43:00.002-05:002012-11-23T02:44:15.302-05:00Emotionally Exhausted<div class="separator" style="clear: both; text-align: center;">
This is the first thing the girls did when we came home after dropping Daddy off. </div>
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They both stayed there for quite a while.</div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-20335208816650034712012-11-22T22:33:00.000-05:002012-11-22T22:36:46.009-05:00Scenes from a Leave-Taking: The Final Goodbye<div class="separator" style="clear: both; text-align: center;">
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-30509595377702774192012-11-22T21:16:00.001-05:002012-11-22T22:35:58.357-05:00Scenes from a Leave-Taking: Morning Prep<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHKFjquOrHQ5j6e9jVIQKbtpf_9ernEKfxoKcWyW8GlUdvp_PyOpQ1M4Et9XVR9SGVvpNBSS8LB1LFddccjLXtdGyJ7L-jYVyJIdFKAE3ZvmN-PCM2wDz0GF6V5-3hIxWJxFWGoD0QFQ/s1600/P1010118.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHKFjquOrHQ5j6e9jVIQKbtpf_9ernEKfxoKcWyW8GlUdvp_PyOpQ1M4Et9XVR9SGVvpNBSS8LB1LFddccjLXtdGyJ7L-jYVyJIdFKAE3ZvmN-PCM2wDz0GF6V5-3hIxWJxFWGoD0QFQ/s320/P1010118.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small; text-align: start;">Breakfast of champions - cranberry cream scones; asparagus quiche with curried onions and Monterey jack cheese with morels and leeks; ham, scallion and cheddar quiche; orange juice, coffee.</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small; text-align: start;">When I told Amelia she couldn't have any paper to draw with she "improvised, adapted and overcame".</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small; text-align: start;">Downloading his voice mails from Amelia <br />so he can listen to her voice while he is gone</span></td></tr>
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Watching Daddy do the final pack from the other end of the room</div>
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Rafe making fun of me for something obscure :)</div>
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and thinking he is being really funny.... :O</div>
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One last check...</div>
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Time to head out and drive to the drop off point...</div>
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He can't stop looking at his girls</div>
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<div style="text-align: center;">
UGH</div>
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-64687929605169542812012-11-22T20:00:00.000-05:002012-11-22T20:01:14.096-05:00The Night Before<div class="separator" style="clear: both; text-align: center;">
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Calling friends and family to say goodbye</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt8eHNGVf1ZtHP04AmltzNKPlxEiLKXBILDcPlkiAwDQEWNiBHgDg1gREfYAUTr4kcUo5wJma0Zd-6SIdOf-zmvogKiIN7U8rQQSRHURVydDr136sCNwzmdCCTltNeLtCTkYJWx5ODBA/s1600/P1010022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt8eHNGVf1ZtHP04AmltzNKPlxEiLKXBILDcPlkiAwDQEWNiBHgDg1gREfYAUTr4kcUo5wJma0Zd-6SIdOf-zmvogKiIN7U8rQQSRHURVydDr136sCNwzmdCCTltNeLtCTkYJWx5ODBA/s320/P1010022.JPG" width="320" /></a></td></tr>
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Snuggling with Daddy </div>
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Telling Daddy all about it!</div>
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Playing with a parachuting bear that Rafe made - </div>
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out of a stuffed animal, rubber bands and a trash bag.</div>
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"I know you'll catch me, Daddy!"</div>
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Catching Salamanders</div>
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Snuggling as it gets dark... no one wants to go inside.</div>
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One last phone call goodbye at dinner</div>
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Sharpening weapons and packing up. </div>
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He waited till the girls went to bed to get this done. </div>
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I sat with him by the fire till he was finished - after 430 am.</div>
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Olivia woke up in the middle of the night and came downstairs to watch.</div>
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Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0tag:blogger.com,1999:blog-374334482058757903.post-80240567728402664072012-09-23T23:46:00.002-04:002012-09-23T23:47:13.237-04:00"Is it the Prada Willi?"There is a question that circulates in my house every so often. It's said by all of us, in many different ways, and every time I cringe.<br />
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Sometimes when I explain to Amelia why she needs to eat her ice cream in the garage with Grandpa instead of in the house, she says "It's because of the Prada Willi, right Mama?" <br />
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Sometimes when Olivia is climbing my legs while I'm cooking because she's so hungry and no one else is at home to watch her... and Rafe walks in the door and sees her, asking with anguish "Do you think this is the start of it? Is this the Prader Willi kicking in?"<br />
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Sometimes when she is squealing at the top of her voice at the table because she wants something more or different to eat than Amelia, she'll ask "Is it the Prada Willi?"<br />
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Sometimes when she screams at transitions and I have to explain to others that she needs to be able to say "bye bye" and have time to process; and that yelling and spanking won't help, I say, "It's the Prader-Willi"<br />
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And then sometimes, like tonight, I watch her cry piteously and beat her stomach over and over. I ask myself, "Is this Prader-Willi?"<br />
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I hate it every time. I hate it most of all for sweet Olivia, who doesn't understand why someone she loves won't feed her.<br />
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com3tag:blogger.com,1999:blog-374334482058757903.post-90362554216617554512012-08-23T23:38:00.002-04:002012-08-25T01:44:55.419-04:00It takes a village... to raise a special needs parentThree years ago today, about 20 minutes ago, my youngest daughter was born. Some of her story is <a href="http://savorysolutions.blogspot.com/2009/09/now-would-be-good-time-to-pray.html" target="_blank">here</a> and <a href="http://savorysolutions.blogspot.com/2009/11/olivia-is-home.html" target="_blank">here.</a> We've recently (in the last few weeks) moved from Parris Island to Camp Lejeune. I've been doing a lot of reflecting on all that occurred during our time there. I often think of it as "Before Olivia" and "After Olivia". Anyone that has gone through any type of intensely emotional or traumatic event knows what that feels like. There is a split second when everything changes and nothing, absolutely nothing, is ever the same again.<br />
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I spent most of my time taking care of Olivia that first year. Her issues were much more severe than most children that had Prader-Willi Syndrome; and as a family we also faced additional issues because of my husband's back to back deployments and lengthy absences from the family for training and other things. The first few months, I literally had 15 minutes free out of every 3 hours where I wasn't either caring for her or doing something directly related to her care. I pumped breast milk for the first year of her life... 45 minutes every 3 hours. I can not tell you how happy I was to end that, yet how satisfied I was that I did it. She needed it to help build her immune system. Then there were the feedings on gtubes, the special positioning, the burping, the sitting up afterwards in order to avoid giving more medicine than she was already taking in and much more. It was exhausting. And how was I to shower? Talk to a friend? Make dinner for my family? Clean the house? Tell my family what was happening? Most importantly, how was I to care for Amelia - whose world just crashed. It had been the Mommy and Me show for three years; Daddy was gone most of the time and we were partners in crime. All of a sudden I was taken away from her. How could I do my job caring for Olivia with doctor appointments, evaluations, therapy, etc and yet still have time for Amelia?<br />
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The answer was... I didn't. Not alone, anyway. I have been looking back and thanking God over and over again for the blessings he gave me through the people who showed up to help our family get through this time. I want to name them, but I'm so afraid in my weariness tonight (Rafe is gone yet again for deployment training) that I will forget someone. So many people stepped up to the plate to offer to help; and not just offer, but to tell me specifically the ways they would/could help that I would have never thought to ask. First and foremost, my next door neighbor Lori Fisher. We were part of a group of friends who jokingly called themselves the "3 Lori's and a Judy".. myself, Lori Kline, Lori F and Judy. These women were my friends, my mentors and my spiritual advisers. I could not have asked for a stronger group of Christian women to be surrounded by during this time. When I think about that time, I realize that never in my life have I had such experienced and wise mature Christian women around me so closely as I had during that time. I believe God placed them there for just such a moment. They brought me meals, helped me organize the same space again and again when I was too weary and overwhelmed to do it, talked to me, counseled me, prayed with me, ran errands for me... there was nothing that I couldn't count on them to do. They included Amelia as much as they could. More importantly, Lori F came every week at an appointed time for over a year to sit with and hold Olivia because I just couldn't do one.more.thing. I slept, showered and I can't even remember what else I did. Lori was a hospice nurse, and as Olivia grew and was able to move more, she listened to the therapists and did therapy with her so I could rest. <br />
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Pam Rentz, a Stephen minister from my church did much the same thing. She came and loved on both Amelia and Olivia for over a year at an appointed time weekly. Meghan, a complete stranger when I met her, but sent to me on a day when everyone in the house was so sick but Olivia and I was at my wits end trying to keep her healthy, became a lovely friend and is now a pediatric physical therapist. She too came and watched Olivia at a set time each week. Without these mainstays in my life, I don't know how I would have had the energy or strength to care for anyone else, including myself. It was the most emotionally exhausting and grueling time in my life. <br />
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In addition to those amazing women, there was another PWS mom, Janet G, who literally sent me emails daily forwarded from a Yahoo support group because my brain was so crispy that I couldn't figure out how to join on my own or some other reason I since can't remember. It probably sounded kooky to her at the time but she did it and without complaint when I asked. She called and checked on me periodically. <br />
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There was my EFMP case manager, Amy H. who held my hand and told me step by step what to file, what to ask for, what forms to fill out and what to say when filling them out. I asked her the same question over and over again because I couldn't think straight at the time. The programs the EFMP office offered helped teach me my rights as an advocate and parent, and how to manage this new life. I'm still learning all the time.<br />
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I was later diagnosed with Birth Trauma PTSD, something I never even knew existed. Without these women I don't know how we would have survived as a family. <br />
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The two therapists we've gone to - one for me and one for us as a family to recover from these three years.<br />
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My parents came to live with us, each of them taking turns staying at our house and helping with dinner, time with Amelia, housework and therapies. Numerous other friends and neighbors helped out with meals, friendship, support. People from my church also supported me in both tangible and intangible ways as well. The pastor who came to the hospital and grieved with me comforted me in that shared moment more than any words of prayer could ever have done. <br />
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The greater PWS community online... answering questions, letting me vent, celebrating Olivia's successes as if those achievements were theirs, giving me advice, teaching me how to react to situations... I can't imagine going through this rare syndrome alone. I feel empowered because of this community. <br />
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My two brothers and sister, my sisters in law and brother in law, who have never once made me feel bad for not communicating with them, keeping up my end of the conversation, or being a part of their lives while I was consumed with my own children. My parents the same way, when they were not living with us.<br />
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The MCCS community and my neighbors at Parris Island... women in the classes who listened to my story of Olivia's birth again and again and again and AGAIN as I worked my way through my grief and anger. For over two years, they listened... until I finally didn't need to tell the story to every single person I met. And they never once rolled their eyes, told me to get over it, or made me feel as if they would rather be anywhere else.<br />
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Tricare... for all the problems with insurance, and military insurance, I am extremely grateful to Tricare for paying for the enormous amount of services we needed. The army of therapists, doctors, specialists, hospital visits... without all that early intervention, Olivia (who could not move at birth) would not currently be climbing stairs and into my bed at night. She's an amazing little fighter girl. <br />
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**Edited to add this: <br />
<b><i>Olivia's therapists... where would I be without them in her life? And in mine? Susan Heim, Frances Cherry, Janet Steer, Meghan Vandebergh.... through three years they were intimately involved with my family. They worked with Olivia and with us. Sometimes on therapies, and sometimes on life. I remember right before I was diagnosed with Birth Trauma PTSD and was in the middle of having a mini nervous breakdown, I would sleep on the couch half watching the sessions. They would come to my house and I would be disheveled, the house would be a mess, but they always greeted me and Olivia as if we were their most important clients and dear friends. I sometimes would ask them the same questions over and over again as well. At one point during this time, our speech therapist wrote a prescription or directions for me to hug and kiss Olivia x amount of times. It was put so tactfully that she needed the physical interaction for her therapy, but I think in my heart she could see that I was feeling detached and disoriented and wanted to help steer me in the right direction. I can never thank these women enough either... they helped take Olivia from basically a non responsive infant that could not move, cry or make any noise or indication of life to a happy, singing, playful child. </i></b><br />
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And let's not forget the amazing NICU nurses and doctors and nurse practitioners who saved her life, cared for her, educated me and held my hand through the process. During my NICU stay, I learned even more that nurses not only care for the patient's physical needs, but good ones also care for the emotional needs of the patient AND the family. It's a heavy burden. Say a prayer for your local medical team today. They spend a lot of energy caring for strangers over and over again, often without any idea how the patients do once they leave their care.<br />
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If I've left any one out, or any category out, I'm so sorry. I'm extraordinarily grateful for the army (or would that be battalion?!) of people who shaped me into the mom I am now. <br />
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It took a village, and it's a village that I am deeply, deeply indebted to. <br />
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Thank you with all my heart. Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com4tag:blogger.com,1999:blog-374334482058757903.post-60829082830106198492012-05-06T01:46:00.001-04:002012-05-06T02:56:04.002-04:00Nature GirlAmelia is definitely my little nature girl. I have a biologist friend from early in our days at Lejeune when Rafe was still flying Cobras that gifted her as a newborn with her very own fishing rod (which we still have, by the way). I'm convinced that was secretly a fairy godmother touch, because she loves all things nature. Someday we'll go visit this lovely woman and her children, because Bianca now lives and works in one of the coolest places in the United States - Yellowstone Park.<br />
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My fairy princess daughter regales me with tales of time at the playground playing with worms, and how some of the "mean kids" are not very nice to the worms. She likes flies because they tickle. She hunts ladybugs when she can and was seriously disappointed this year at the diminished ladybug population in our back yard. She wants to be a dragon when she grows up and sometimes I wonder... </div>
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Amelia and one of her little girl friends had an experiment feeding fire ants bread and once they all came out she decided to collect some in a tic-tac box. Every time this little girl comes over, I give them both my stale bread, nuts, and anything similar and they throw it around outside and try to find what's left of the last stuff they put out. I've never seen two happier girls, running around and giggling and playing with bugs. <br />
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She had a pet roly poly named "Holy Moly Roly Poly". The name alone still makes me laugh every time I think about it. I think Rafe tried to convince her to call it Rock and Roly Poly. </div>
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We have a dead fly in a dish right now because she's not quite done looking at it with a magnifying glass, although I am really ready to have that thing gone. There are cups everywhere in my house with dead bugs that she was certain would live this time with just the right addition of dirt, grass and Spanish moss. I tried to throw one away today and OH. THE. TEARS. </div>
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She's always outside digging in the dirt and making things out of sticks. She recently made a stick house in one of my flowerpots, and sometimes takes my plants and decides to help me by planting them in the yard, where they promptly get mowed over by the lawn service. She's undeterred, however, and is soon back at it. She gets so tickled by helping me and is so proud of herself that I think a few brutally murdered plants are worth it. </div>
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Amelia has a Special Treasures box and it's full of feathers and shells and rocks and even pieces of concrete that she finds fascinating. We had it in a small box and it's now in a large shoebox. I convinced her the other day to let me use some of her special rocks in the bottom of some of my pots, but it was hard work at first until she realized they would be more protected that way :) </div>
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Recently we decided to try and have a vacation in Silver Dollar City on our way back from Texas to see one of my nephew graduate. Gas is so expensive, we were looking to save money by camping out when we got there. When she heard that we *might* camp, I thought she was going to have a heart attack from excitement. She's never camped or fished before, but she has asked for both for several years. Amelia went running down the hallway, hooting and jumping and running in circles. </div>
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She caught a salamander in a jar earlier this week, but we convinced her to take it to school and then let it loose in the garden after showing it to her friends. Tonight as we left the house for a walk along the water to see the stars and the Super Moon (her reward for helping clean the house today), she made me catch a tiny frog climbing the wall of our house. Mia thought it was hilarious that the frog "pottied on Mommy!!!" but I'm still traumatized from frog urine in my face. It's sitting on our front porch right now, waiting to be released back into the wild. </div>
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She loves walks in the dark and looking at the stars. Tonight with the breezes blowing and the moonlight shining off the water, I realized once again how lucky I am to have her as my daughter and how uniquely she is her own person. She'll take me places I would never go on my own (Frog hunting, for one) and I'm better for it. </div>
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This is Amelia three years ago, when she was 2 - the same age Olivia is now. </div>
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<br /></div>Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com2tag:blogger.com,1999:blog-374334482058757903.post-50535399456753897612012-05-04T14:52:00.001-04:002012-05-04T14:59:11.410-04:00Not sure how I feel about this....Earlier in the week, our speech therapist came by and we did some chewing "tests" with Olivia. I had a plate full of things that were or had been difficult for her to chew and navigate in her mouth. Dried apples, cinnamon coated almonds... things like that. She was able to chew them all, finally! Success!<br />
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But as the ST noted, she was noticably better at chewing on one side of her mouth than the other. This led us to a discussion about how she's always had a better side - even the OT and PT have commented on weakness on one side. We've had scoliosis checks and leg growth checks because she favors one side and her hip seems lower on one side; all to come out normal. It was finally determined to be some sort of muscular issue of unknown origin. But during this discussion, our ST asked us if we'd considered a neurology consult. <br />
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No, we'd never had. Not until that moment. We (I) had always put it down to the PIC lines put in her when she was born. She had to lay there with the lines on the same side, the weak side, for almost 3 months because they had such a hard time putting them in the other side. Once in, they didn't want to move them. I had always assumed that it contributed to a type of atrophy of some sort and she would always be just a little weaker.<br />
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But neurology? Never considered it. I had a quick visit with her pediatrician this morning, and he mentioned as well that he had noticed an asymmetry to her face that corresponded with the opposite side of her body that has the problem (which made sense after he explained it). As he began to talk about it, he mentioned mild cerebral palsy as something that might be considered. <br />
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Cerebral Palsy. Of all the things I've thought about, I haven't heard that word since her early days in the hospital. When no one could figure out what was wrong with her or why she was so motionless, CP kept popping up. Once it was determined she had Prader-Willi Syndrome, I never looked back at that possible diagnosis again.<br />
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Not even when we visited her endocrinologist last year - the one with over 400 Prader-Willi patients. The one who is the specialist in this field, who researches PWS kids and helps us find new breakthroughs. The one whose assistant said, <a href="http://savorysolutions.blogspot.com/2009_11_01_archive.html" target="_blank">in taking our history once again and hearing the list of traumatic things that happened during her first few months, </a>"You know that's not ALL Prader-Willi Syndrome, right?" It wasn't even a blip on our radar, because the symptoms mimic each other to a certain extent at birth. <br />
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I wish I knew why I never pursued that weakness more thoroughly. I'm not sure we would have done anything differently with a CP diagnosis. But for some reason, that possibility is hitting me harder than if she were to get a PDD-NOS diagnosis, which is another possibility soon. <br />
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So now we have a neuro consult. And a gastro one as well, for other ongoing issues she is having. <br />
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<br />Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com4tag:blogger.com,1999:blog-374334482058757903.post-10068360735048598002012-05-04T11:16:00.003-04:002012-05-04T11:21:53.041-04:00Rockin' it!Amelia: <br />
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"Mama! I need to tell you something. We're doing weaving at school and I LOVE weaving. Love, love, LOVE it!! At first I didn't know how, then Maddy showed me, and now I'm rockin' it!!"</div>
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I think Mia just said her first slang. I loved how she said it. It was so cute to hear it, yet gave me just a twinge of heartbreak because she sounded so grown up. I feel very old-fashioned, which will come as quite a shock to anyone who knew me pre-mom. Especially my own mother! </div>
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<br /></div>Lauriehttp://www.blogger.com/profile/06271813324723765876noreply@blogger.com0