tag:blogger.com,1999:blog-89463314428344643012024-03-06T00:54:20.495-08:00The Katie PuzzleMusings from a mother of a beautiful child with special needs to the tune of developmental delays, seizures, low muscle tone (hypotonia), hip dysplasia, gastroparesis, non-verbal, with no formal diagnosis. I want to share my experiences and my silly, fun, amazing daughter to hopefully connect with other parents as well as find more possible diagnoses.Unknownnoreply@blogger.comBlogger21125tag:blogger.com,1999:blog-8946331442834464301.post-73155571394237201692019-03-05T16:59:00.003-08:002019-03-05T17:35:31.994-08:00Special Ops<span style="font-family: "georgia" , "times new roman" , serif;">It occurred to me today that I have been doing this parenting gig for 17 years this month. Not just parenting, but parenting a child with a disability. "Special needs" parenting. I'm still not even sure what that means, outside of the concept that basic things are harder than they should be, <i style="font-weight: bold;">everything</i> for my kiddo costs more, and we still keep getting up every day to do it again. We put our pants on the same way as everyone else (albeit some days they're inside out or backward; some days both).</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span> <span style="font-family: "georgia" , "times new roman" , serif;">But I remembered an <a href="https://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/" target="_blank">article </a>stating that parents of children with disabilities have stress hormone (cortisol) levels similar to combat soldiers. Parents of children with autism have discussed the effects of constant vigilance on their psyche, such as one of my favorite blogs, <a href="https://adiaryofamom.com/2011/04/07/ptsd/" target="_blank">a diary of a mom</a>. You know that panic feeling you'd get, when your child still had that "new baby smell," you'd see them sleeping and your heart would catch in your throat as you wondered, for that agonizing split-second, if they were still breathing? My kid has a seizure disorder. That happens to me. Every. Single. Day. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span> <span style="font-family: "georgia" , "times new roman" , serif;">As I stared at my sinkful of dirty dishes, I reflected briefly on my 17 years of hardcore-parent training. We aren't the "enlisted" type of parents. Hell, we aren't even "drafted." We aren't quite sure how we got here, but we are the Special Ops parents. And I'm going to wear that like a badge of honor whether it's an inside-out pants day or not.</span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span> <span style="font-family: "georgia" , "times new roman" , serif;">We are the parents who you call when something weird happens with <i>your</i> kid. We are the ones who you call when <i>your child</i> gets a diagnosis. We know all the medications; we know <i style="font-weight: bold;">most </i>of the acronyms. We are the ones you call when your kid qualifies for services. We ask how <i style="font-weight: bold;">you</i> are doing before we ask what they qualified for. We know how hard that day is, regardless of how much you wanted the help and validation.</span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;">We are the parents who you call when no one else is up to the job. Whatever it is. And hopefully, if it's a right-side-out pants day and I've had my caffeine, you'll get the support, love, and excess of information from me that you deserve. Because we have a code. No one gets left behind. We may be terrible at getting out to gatherings, parties, and returning calls. But when the chips are down, we'll be there for you. With hugs, caffeine, and an arsenal of anecdotes and <a href="https://centerforparentingeducation.org/library-of-articles/focus-parents/survival-tips-for-special-needs-parents-youre-not-alone-i-promise/" target="_blank">resources</a>. It's almost like we've been trained for this. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span> <span style="font-family: "georgia" , "times new roman" , serif;">In fact, we call <i style="font-weight: bold;">each other</i>. Those moms in my circles who have had different training have their own specialties. My BFF is my respiratory system/ADHD/allergy/504 "expert." I'm the seizures/global developmental delays/nonverbal/genetics/pseudo-autism/IEP"expert." My other dear friend from way back is the foster care system/preschool/tie-a-knot-in-the-end-of-your-rope and hold on "expert." And it spreads out from there. We call each other to ask questions for other people. We may not know the answer, but "we know a guy." If we can't find it, we'll find you someone who might know... because we've all been on the search for answers, and we're stronger together. </span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><br /></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8946331442834464301.post-40621819514183558432015-04-12T13:42:00.000-07:002015-04-12T20:28:41.515-07:00The Surprise MarathonWhen I am involved in support groups for parents of children with special needs, whether online or in person... (on the off chance I've conquered my social anxiety enough to actually attend), I have come to realize that I am an old hand at this. Most of the parents are relatively new to the world of special needs and all that it entails. I may not be the oldest parent in the room, but my daughter is older than most of these parents' children. Because Katie is 13, I have been doing "this" for a long time now. Here is what I have learned thus far:<br />
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<i>Having a child with special needs is a lot like running a marathon when you've only prepared for a sprint.</i></h3>
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Everyone understands that parenthood requires a level of commitment. But there is the general belief that even though these tiny people will require all of your strength and energy at first, they will eventually grow independent and competent over time. So you train and prepare for a sprint. You know that this is going to be tough but exhilarating. You are ready. You stand in your sneakers at the starting line, awash with hope and excitement at the feat you are about to undertake. You think you can see the finish line off in the distance, and you're prepared to give it your all. <b>You plan and dream about what you will accomplish</b>, hoping that your training and preparation will pay off and you will be swift and efficient.<br />
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As you start off running, you feel the wind on your face and see the smiles of those who've gathered to see you race. They cheer you on and offer their support and encouragement. Everything feels good, and this is what you were training for. <br />
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But as you run, something begins to feel off. <b>You can't make out the finish line where you thought it would be</b>, and the other runners seem to have disappeared--long ahead of you. There are a few people along the sides, still gathered to support you in your race but not as many as before. You shake off the feeling and continue on your run, enjoying the beauty of the scenery and the rush of what you've accomplished. Still the race continues with no finish line in sight.<br />
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You begin to become weary. <b>It's hard to say what starts to wear out first: the body or the mind</b>. But every time you begin to round a corner, you tell yourself "This is it. It's almost over. I can make it." Until you see at the turn that it isn't the finish line at all. Your heart hurts, your knees are wobbling, but you continue to put one foot in front of the other despite it all. I can't speak to what it is like when your child has a formal diagnosis, or a "road map" as I call it. I know that it doesn't mean this map provides the exact route of your particular marathon. But having no map at all has been a lot like rounding many curves in the race only to find a new challenge or obstacle that had never even occurred to me as I prepared for a sprint. Suddenly, the race includes hurdles--a feat you are certain you never signed up for, and for which you are grossly unprepared. <br />
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Still you do your best, jumping as you can, knocking over a few hurdles and looking back with slight regret. You feel as if you should have known there was a possibility those hurdles would be there, and <b>some insane part of your mind tells you that you should have been prepared</b> and thus able to soar over them. But you have to let it go. If you are constantly looking back over those fallen hurdles, you will never be able to move forward. After all, who can run effectively while constantly looking over their shoulder? <br />
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Sometimes all of the second guessing, the surprise hurdles, and the looking back will cause you to stumble. Maybe even fall and scrape your knee. Not necessarily fatal injuries, but injuries just the same. Pain that makes every step more difficult. You might have to stop at a first aid station to fix yourself up. It's true, <a href="http://researchnews.osu.edu/archive/telomeres.htm" target="_blank">caregiving can take years off of your life</a>. And as a "forever parent," this is something that haunts my dreams. I can't imagine not being there to care for Katie or make sure that her life is as beautiful and joyful as possible. It terrifies me to my core. Much more so than the mirage of a finish line could ever shake my resolve. I've made up my mind to simply live forever.<br />
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Of course there are good things that happen during this race. People pop up on the sidelines who make a difference in your life. You meet wonderful people who are running a similar race, and you may run together for a time. The scenery is beautiful and unexpected joy is found all along the way. It's never easy, but that doesn't mean it's not worthwhile. This world just isn't set up for people with disabilities. It could be, and things are getting better slowly but surely. But there are many hurdles and obstacles that don't even need to be part of the race. Our culture needs to remove those obstacles and recognize that disability is just another part of human diversity.<br />
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I wish I had the answer to the surprise marathon experience. But I am still running my race. And honestly, I don't know if I will have the answer by the time it ends. Perhaps if disability were less stigmatized and more accommodated in life, it would be less surprising when someone has a child with a disability. As I still seek a diagnosis for Katie, I believe that a "road map" would help ease the shock of surprise obstacles a bit. I also know it is entirely possible that her diagnosis will be so rare that there will still be no road map to go along with it. But if we can't use her diagnosis as a road map, perhaps we can leave one for those who follow behind us in the race. All I can do is find my own pace, try not to drag any fallen hurdles behind me, and keep running.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-44081619244563965462010-10-04T01:33:00.000-07:002010-10-08T01:11:16.527-07:00Nesting<img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 640px; height: 426px;" src="http://photos.realestateadmin.com/saro/photo/201/020/201020028.jpg" border="0" alt="" /><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><span class="Apple-style-span" style="color:#0000EE;"><u><br /></u></span></div><br />I have been "nesting" for the past 4 months... collecting little bits of string and fluff to make my nest unique and comfortable for my little family, which is my world. By string and fluff of course Imean vintage embroidered pillowcases, tablecloths, and cute towels with colorful, retro owl designs on them. It's mostly a linen thing, for some reason. Probably because I already have most necessary household items and the only things to improve on are the decorative accoutrements. And no! For cryin' out loud, I am NOT pregnant! <div style="text-align: center;"><br /></div><div>The irony here, for those of you playing along at home, is that I have no nest. Not officially anyway. Katie and I are staying with my former in-laws. I wish there was another name for them, as "ex in-laws" seems disconnected and cold. I suppose "friends", "secondary parents", or "dear cherished wonderful supportive people who owe me nothing and give me more than I could ever dream"........ Maybe there's an acronym for that! So we are invading their space, which they swear they don't mind... And I hope that is always the case! </div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUj9iI9wSexp8k64WPQM3ud8-ct2PCSQb_fLQNZxt-9q5Y4eEji1IP24PNzm7TadFHtpZ2Hp8c-wQWZRzp_Exz0RbZLxVM3efejb2rQW6xO3Xjqv-53-vC4pgTkx1vt_7S6K-ruRTKCwo/s320/IMG_0706.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5525385912179155538" /></div><div>So it seems odd to me that I scour the second hand stores and craft fairs, etc, to find beautiful little things to make a home cozy, and then wash and fold them, and place them in the top of my closet. At this point, I would have to rely entirely on someone else for us to actually have our own home, though homeownership is my ultimate dream. I know there are programs, and I <i>am </i>working on improving my credit score and whatnot. But all of that is a long long long way away, and I am at the mercy of others for an indeterminate time. </div><div><br /></div><div>I was thinking about this recent (and longest I've experienced) period of nesting I'm going through. I was thinking about my miscarriages, and the interesting pregnancy I had with Katie. It was actually interesting because it was uneventful, and nothing really came up as a true red flag... all the things that happened could have been coincidental or written off, but the combination of things and the passing of time, makes them seem more significant as pieces of the "Katie puzzle". She was less active in the womb than most babies (as I read a LOT during this time and was often concerned...), in fact she failed a nonstress test 4 days before birth because she didn't react to it! She had a 2 vessel umbilical cord, which often leads to kidney issues and other problems. (we had no problems, it was just weird that it was a 2 vessel cord instead of the customary 3)... Katie was 11 days late, and I am SURE of my dates because I stopped taking my birth control (bad idea), and was pregnant exactly 4 weeks later. Her fontanelle (soft spot) was huge, and covered most of the top of her head when she was born... when I geeked out, her pediatrician said, "Don't worry, it will close before she goes off to college." Funny, even at the time, but didn't make me feel like it was less significant of an oddness about Katie. </div><div><br /></div><div>There are more things, and we discovered a lot as she grew and even now, things come up every 2 years or so that present new challenges--ie. seizures, bowel issues, etc. But what I find even more significant and puzzling, is that I have had 4 miscarriages since I gave birth to Katie. She is my one and only. 3 of which were with Katie's father, and the 4th with my current boyfriend. I was hoping, shame on me, that the miscarriages would end when I got a new partner, but alas that was not the case.</div><div><br /></div><div>So with Katie's "issues", I wonder if her birth can be called a "successful" pregnancy as they say in the biz. I am not at all saying that she is not the love of my life, my best friend, and my darling child, but seriously, if there is a genetic component to her symptoms, then what is going on here? None of my failed pregnancies made it past 9 weeks, so I have very little data on what happened. And it didn't help that the first 3 were written off as coincidence/bad luck/whatever, so they weren't careful examined. Even the 4th wasn't really evaluated much, so I really don't know what to think. </div><div><br /></div><div>I ponder these things sometimes at great lengths. I long for more children; I cherish my friends' children with all my heart and always wish they were mine until they misbehave... (the luxury of being an "auntie"!) I would love to help with foster care, and potentially adopt someday. Maybe that is why I am nesting. I am nearing 30 (I will be 29 this coming January), and the baby urge is intensifying greatly. So is the desire to have a home for my little family, where it can grow into a slightly bigger family...... and maybe even welcome in some children who otherwise wouldn't know the hugs, warm cozy blankets, and super special secret recipe chocolate chip cookies that I have to offer.</div><div><br /></div><div><br /></div><div>**BTW, that is not my house at the top of the page... but a house for sale that I adore, but of course couldn't ever afford!!!**</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-62667577267236415762010-10-02T18:22:00.000-07:002010-10-08T01:10:08.651-07:00Apple Festival Fun<img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0jSxtnJVhuRAfZupKjlZ3XpSPibwCknlXTU6Uld9wTQjxRZnbFdfzUReXK1jmDwmtaUhOUvpk965gNnAOH6TQZsaZ8C1A71bJ8TeuTNyd6Cwlp5kaeJef56U0y_wBFQPQvrXA-yIptno/s320/IMG_0682.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523626652764462946" /><div><div style="text-align: center;">Today we went out and about for the Apple Festival going on this month. </div><div style="text-align: center;">Weekends at the Bluff are a crazy, colorful, tasty blend of kids and old folks out to enjoy the local bounty.</div><div style="text-align: center;">We picked some apples at our favorite Mom & Pop orchard...</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK8-g-hJIeyrkCmpTgTQkykOGgqPqKMhQa_O1KGHiL8scyRAbCh2yDgtAuJhceEIy0RPVX0IwIimtg7Z3MHnM3NGXtHJZjyOgnnkC-PEQDZK5WSubZzzkzpz3pmV0qAqYdViLODuikmLA/s320/IMG_0694.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523627322254887378" /><div style="text-align: center;"><br /></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwWU4YtXN_MT0whhj5QDMt95KslIa_8DSEs74q4OY1sosH68fV2OecTiF75sdDldEh6VKuU7uZxoLJqSzRSYJh1mRZDFCMze-lxyEfASaMZRol_7UjNe-HHPWe-HGI2gjAXVPZC1R_X_w/s320/IMG_0696.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523627329017002114" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu6VGnJwQJAQ762awoGwtv8MIDcAElF3Q2iYWjiU6LrNN0oAstp0UN4TTnwNrKujun5b5asmxQNzxkNz16ST-rcQK6XRgcyPXRtdVOTlGGJd-GoXKVjOkjjbRXIgTQ-8vY8fSlMwqU8PQ/s320/IMG_0692.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523627312162295346" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOrUeJrYAy6H4iM6CfsVKLShIPDAIDn0EgMr-i2OJ0QQgvuGEDksQ3Yar_nVC_c7wgpt_RSigUQTv8LkEjGNKnJngbvYda5HZHSLkaOpXp8xCxs8XDKWCyuaTSZJxi0gWaa9d4W9z36aA/s320/IMG_0691.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523627304389326914" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghFKzIil9_Dgd7chNnsqNWnRaA9azecOGvRRmH1s_SNWdN3oP3gl4w70T3fM_np9Uo9x2PZGUeXpwp41lBjVqb_WtXF2LbyziK0F9Wv0UWFLgD0Bp-le9a39n-mEXgrPqDeaQHxehKjYk/s320/IMG_0684.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523627293790874530" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh9G10vDPzuaVqHjLnHwMo3Nl8RKp30N_LSW1CbZ1ZGLA_Pcs3kTjGUFHq78OS_n2y1PBSBl0cBMlvYXH0fp182d2lrs-DRSSZIOqIGYVceFBotE6LHIfvsBea3opfVFNhN_hRoFEEpCg/s320/IMG_0677.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523626641574002274" /></div><div><div style="text-align: center;">Miss Katie being silly in the orchard</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP8_jKuh5TyPlLwD1MYPMdGrzxZ8Iu9nLC6lYshozL3iXWCDqlybvrjP8zEv20rR3entcjGw1PeUu2Gh-SKQO5Fhtx8QTifJ9CcNe9JlUrURjb2cHi-b1CIUQ_1A1EJqbZ6mvBO0SdSk4/s320/IMG_0675.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523626632723487554" /></div><div><div style="text-align: center;">We started to go to the Grange Hall for a look at all the crafty holiday decorations.... but there was a gaggle of geriatrics in the doorway who couldn't decide if they were coming in or going out, and I decided I didn't have the patience to wait to see. (nothing against their age, I do have issues with people who are oblivious to those around them but since they were elderly I didn't feel it was appropriate to get on their case...</div><div style="text-align: center;">so we just skipped that venue)</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkeJB_qy6sJSYJZPpEB3NZmrve3HAL1dfE6WA_TqCO7NPNhW7yDD53bGKbPUc6L4AorpHGDRz-4SN6GB306_1hWTzemdc7xzZMimkLCIYLc8RDHZ7vHDoktGmalzVjQMw0fjUkHhV63uA/s320/IMG_0671.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523626616675203346" /></div><div><div style="text-align: center;">Katie got a big kick out of observing the petting zoo!</div><div style="text-align: center;">She loves watching the little pony, pigmy goats, and calf grazing and ignoring the people around them.</div><div style="text-align: center;">I would have liked to take her in, but she's not much for actually touching animals </div><div style="text-align: center;">except on rare days when she pets our kitty.... </div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3en9eM6GlbBvtBF8sIuHHK7tW45dOKux5wgmX3dFNz0Bc7wJX8alXwEd3Ta0Ei9lac4CRdEuQaefHlr9-9W_mgXVU_PKakp4fGRFXLFyXZZLrLacCned70_Ti_HTocNt2vHzXNAwhOWM/s320/IMG_0668.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523626610809246722" /><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiro1iCh_CI0qccWRYyyqLghBaUVMYHDvDFTThiLnGsLud5N4_-yI9QdeAbqNBkMV-T7-uOOScW6jhzYEEwDB35ecspDZy3cN3yUeeXvVKVUL3qkvlZtVexQvB12ArA3FoYvAGj8V0_rl0/s320/IMG_0690.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523624531874782770" /></div><div><div style="text-align: center;">Beautiful empire apples waiting to be picked...</div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfVhl1Uj43XuZIJhEN3_bYp94TBI-Um2StK5U2l8k1RKOvgyNeholgMWf6fIM_6d0pjJPpK5E3ObaL9m_EiZmXflYuLgWwkjsyD6gUMtDuLQ5a5QXGAAAF-mWmQMrQ50SZz29KlH-Od0w/s320/IMG_0699.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5523629746811374802" /></div><div><div style="text-align: center;">We were so worn out from the beautiful weather, fun views, and orchard hiking! </div><div style="text-align: center;">Little Miss Doots took a looonnnnng nap when we got home! (so did Mama...shhhh!)</div><div style="text-align: center;">~</div><div style="text-align: center;">We got a ton of apples, fresh plums, squash, and apple cider fresh from the orchard..... What a wonderful day. I love this time of year! Can't wait to break out all of my apple recipes and see what I feel inspired to create!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><br /><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-45485605079388679002010-09-23T22:31:00.001-07:002010-10-08T01:11:44.433-07:00Unconditional Love... and Inside Jokes<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzpxn09lmd_AyVBUM5o1kcrSv-dHaTfbL6n2EMy4E07zcYi2a5RinR8nuSek64P3XjUMwzTd51WeSfd_SUbDUi0kc-nLEigA89d2a9bz6g-Sy5SiILSc9pEUc_Q2EhidOS6ME0Pr2e56E/s1600/IMG_0550.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzpxn09lmd_AyVBUM5o1kcrSv-dHaTfbL6n2EMy4E07zcYi2a5RinR8nuSek64P3XjUMwzTd51WeSfd_SUbDUi0kc-nLEigA89d2a9bz6g-Sy5SiILSc9pEUc_Q2EhidOS6ME0Pr2e56E/s400/IMG_0550.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5520353365628778178" /></a><br />I was thinking about my life with Katie, the other day, as I often do.... As a mother, I know the unconditional love for a child. It is more intense than I ever imagined. And though Katie's situation is sometimes disheartening, I still know for certain that there is nothing that would make me forsake her. <div><br /></div><div>There is absolutely nothing she could ever say or do that would make me love her less. Of course, I also realize the simple flaw in this statement--the fact that she cannot say anything at all, and her motives are always pure because of her disability. Sure we have our "disagreements", she wants something which she can't articulate and I get pinched and pulverized for my ignorance or noncompliance with her desires. But I suppose in the rebellion-aspect, I have little to worry about from her. </div><div><br /></div><div>But I do love her so intensely that it scares me. I tend toward anxiety as it is, and the uncertainty of Katie's health and medical issues is an easy instigator for my anxiety-prone mind. I worry about her future, her health, the random grand mal seizures which scare the life out of me and make her appear nearly gone to this world for several minutes. I fear that I will somehow fail her, and an accident will occur that I will be unable to forgive myself for. I can't leave her alone for more than a minute as she is nimble enough when she wants to be, and her seizures rob her of her balance. </div><div><br /></div><div>Most of the time, though, I can bask in her simple joys. We have what I like to call "inside jokes." She will look at me, and I will catch the twinkle in her eye, and we both break out laughing. Eye contact has always been difficult for Katie, for reasons I cannot explain to my own satisfaction. Possibly <a href="http://en.wikipedia.org/wiki/Cortical_visual_impairment">cortical visual impairment</a>, though I couldn't get this looked into by the "professionals" at her school. They felt her vision was good enough and if CVI was a factor, it was nearly resolved. That's cool. Don't listen to the person who spends all of her waking time with Katie. Rely on your 30 minute "assessment." **meh** But I digress.</div><div><br /></div><div>The way she looks into my eyes and the giggle fits we get into.... that is the closest to pure joy I have ever been in my life. It literally takes my breath away. Those big blue eyes, that mischievious look..... Nothin' better. So I realize I have it easy when I think hard about it. Katie will not disown me, nor I her. There won't be battles over clothing or slamming doors and hateful words.... But it is a bittersweet victory as there won't be "I love you, Mom" or "Thank you for helping me. You always know how to make me feel better." I just have to see that gleam in her eye and know that she means it.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-14503346520055153072010-05-02T16:33:00.000-07:002010-10-08T01:12:13.742-07:00Compassion<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGgRdStoBmusS9MXnoKNBXF8tieY-ug99n_nxAJny1KDaC3KGdLB6rVUzHzAAFImsWw3iVH2tYiB6VbUBFwEVnO6T-uy-ZdurNsMO2QTJDHk2YVi6J3a_sBiCZLY6z8ObvesocNTUdFns/s1600/crafts+034.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 325px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGgRdStoBmusS9MXnoKNBXF8tieY-ug99n_nxAJny1KDaC3KGdLB6rVUzHzAAFImsWw3iVH2tYiB6VbUBFwEVnO6T-uy-ZdurNsMO2QTJDHk2YVi6J3a_sBiCZLY6z8ObvesocNTUdFns/s400/crafts+034.jpg" alt="" id="BLOGGER_PHOTO_ID_5466822527017500914" border="0" /></a><br />I wonder how many lives will be touched by Katie. We are swarmed when I pick her up from school by sweet little girls who want to say "hi" to Katie. The children in our complex are fascinated by Katie. Shayne's son is her favorite "buddy" and is so sweet and tender with her.<br /><br />People whose lives have been touched by someone with a disability show themselves to be so much more thoughtful, compassionate, and kind than those whose lives are unhindered by the imperfection of life. I believe that people like Katie are some of the most enlightened souls returning to earth in a challenging body to teach us more than we could ever imagine.<br /><br />I worry more about people who do not get the opportunity to know and love someone with a disability. Things are different today than they were even when I was a child. Mainstreaming in schools and inclusion are much more practiced today than ever before. When I was in elementary school, the special needs children were in a separate wing and I rarely if ever saw any of them. They were a mystery. Even scary or intimidating in their differentness.<br /><br />But now we have children who visit Katie and read to her, local high school kids who come and spend time with her class... So many more shows address children about people who are differently abled. I find it relatively easy to talk to the other kids about Katie's differences. Maybe even easier than with adults. They have many questions, but the answers can be simpler than when speaking with adults. As one little neighbor girl so easily summed it up, "Some people talk and some people don't." 'Nuf said.<br /><br />I hope that Katie continues to be surrounded by loving, compassionate people who get to know her. Who will look past the indelicacies of life with a disability and will see the beauty and simplicity within. I hope that Shayne's son will grow up to be a gentle and caring man because of his time with Katie.<br /><br />I wish everyone could have that chance.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-14912904610378093582010-04-20T23:50:00.000-07:002010-10-08T01:12:36.255-07:00Amazing...<div align="center"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiDo_mAoLB9Ha9WwDnhrCmEuSjmtEKO1LYleRq2_HaNc1m_I5otwP0iPj9887kc5o8NiLsuuKdumMd93ZxMNuaulKRBkh5FfrUXM0Yz-ykpNvzFEh2m5N7mCKTxEVKMkUqcDwh7MJkWaA/s1600/katie+aquarium3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiDo_mAoLB9Ha9WwDnhrCmEuSjmtEKO1LYleRq2_HaNc1m_I5otwP0iPj9887kc5o8NiLsuuKdumMd93ZxMNuaulKRBkh5FfrUXM0Yz-ykpNvzFEh2m5N7mCKTxEVKMkUqcDwh7MJkWaA/s400/katie+aquarium3.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5462480258634339266" /></a></div><div align="center">Katers, Katie Bugs, Buggy Toots, Buggy Boots, Punkin Poots, Missy Pea Pants, Toots,</div><div align="center"><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVBlfxu256qxENPOYsJ9Ea6gvKKRsLJLgDwdtFxO0lBb1xrYFqVSrkGY2_K0le8SEe4jRNGf_gRlRvkLBH7osZbo3hWFerKsUst5lZW6VeMdr5qj8FTH1oJvoM3F1YPsf4yjFntzNaK0g/s1600/katie+aquarium2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVBlfxu256qxENPOYsJ9Ea6gvKKRsLJLgDwdtFxO0lBb1xrYFqVSrkGY2_K0le8SEe4jRNGf_gRlRvkLBH7osZbo3hWFerKsUst5lZW6VeMdr5qj8FTH1oJvoM3F1YPsf4yjFntzNaK0g/s400/katie+aquarium2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5462480244608378226" /></a></div><div align="center">Moots, Moodies, Bossy Boots, Punkin Head, Peasy, Matoots, Skwiddo, Boogas,<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOygCtUYVjqweRkXy9Hx5bayPti6my1uVRc3O8sCic6z46C-OvtBdV9rREdB1_lckgOerJvjjIyhPhpHW8CRLT57hm9M0SQkFmG2QwtHTKnApogCPWRJoAQHKfkvN6Ee-0zZPj20_9YFo/s1600/katie+aquarium.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOygCtUYVjqweRkXy9Hx5bayPti6my1uVRc3O8sCic6z46C-OvtBdV9rREdB1_lckgOerJvjjIyhPhpHW8CRLT57hm9M0SQkFmG2QwtHTKnApogCPWRJoAQHKfkvN6Ee-0zZPj20_9YFo/s400/katie+aquarium.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5462480239610622290" /></a></div><div align="center">Buggaboos, Katertoots, Lovebug, Sweetpea, Moochie, Muchas Muchas, Blue Eyes,<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHuhyphenhyphennhjPr0hhJekAu311m_a7pGulVFcTtBor9mrsDiYLF687EJKhP5umaE5YzT2lZiw94mdS2m5WiA-Dzhc0Td2vp7uP11F6iA6PWEsyBdBqih5HLnPxi6X05w0JbBJNVw0WzOI3FLgc/s1600/katie+aquarium4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHuhyphenhyphennhjPr0hhJekAu311m_a7pGulVFcTtBor9mrsDiYLF687EJKhP5umaE5YzT2lZiw94mdS2m5WiA-Dzhc0Td2vp7uP11F6iA6PWEsyBdBqih5HLnPxi6X05w0JbBJNVw0WzOI3FLgc/s400/katie+aquarium4.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5462480266147982402" /></a><br /></div><div align="center">Gorgeous, Lalas, Smoochie, Nanoots, Noots, Doots, My Baby, Scooter, Mugwump, Goobahs, Scubah Doobah, Lazy Daisy, Hoobie Scoobie, Goofy Toots, Lovie Buggie, Honey Bear....</div><p align="center"><br /></p><p align="center">Sometimes I think it's amazing that Katie knows her name... I come from a family who gives everyone and everything nicknames. Silly and cute, nonsensical... I must have a million variations. Still she knows me, and knows my voice. When I walk into a room and start to speak, she turns to me and smiles. She completes me.</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-90067402723094511882010-03-21T17:15:00.000-07:002010-10-08T01:13:02.729-07:00Happy Birthday Sweetest Girl!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3bsfyK6ruf8ddNKBVeOcAjysj37jdZNmC1RjnR_zKk4F3RYlpJmaX0kT8URykMkyUHUzkWMB4NWkbir32v1m56CecFUvtqzb8le-txVCBjV7AbMVFUSR1mmueHWlzDjXFk2nLdPEDwWg/s1600-h/Katies+8th+bday+015.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3bsfyK6ruf8ddNKBVeOcAjysj37jdZNmC1RjnR_zKk4F3RYlpJmaX0kT8URykMkyUHUzkWMB4NWkbir32v1m56CecFUvtqzb8le-txVCBjV7AbMVFUSR1mmueHWlzDjXFk2nLdPEDwWg/s400/Katies+8th+bday+015.jpg" alt="" id="BLOGGER_PHOTO_ID_5451246430258732946" border="0" /></a><br />8 years ago today, on the 2nd day of spring.... a darling little angel girl was born! Katie's 8th birthday is today. I can't believe it! We celebrated by attending a friend's daughter's 8th birthday and she had <span style="font-weight: bold;">pony rides!!!</span> Where does the time go?<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-S8wbbH86_BM3Qz3CWDxzlgUAzadZPhp3GZUh3orF4mfLMlO7X017t2M6MiAI14jtwy4a867atn8hnEqzOmk4mGWiYrF1gpuIBg6RAUsFeJ4gRD9Qq9f5eqd8p5ESaytklUOn2fhZqhs/s1600-h/Katies+8th+bday+031.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-S8wbbH86_BM3Qz3CWDxzlgUAzadZPhp3GZUh3orF4mfLMlO7X017t2M6MiAI14jtwy4a867atn8hnEqzOmk4mGWiYrF1gpuIBg6RAUsFeJ4gRD9Qq9f5eqd8p5ESaytklUOn2fhZqhs/s400/Katies+8th+bday+031.jpg" alt="" id="BLOGGER_PHOTO_ID_5451247311359550274" border="0" /></a><br />Ridin' Annie the pony!!<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDLPD9_P8zbJlwggalpvKFMgFqezAnSKC17kHaaQdloguzYkdGLQLNtW1BLIQdXoAFwOBLWvu-a0pcqSMngarXj36L9LiJwcetdoNbBhstZb2RTPndH3z3Cw7x_sLVGYwyuG-x0KzwFVY/s1600-h/Katies+8th+bday+018.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDLPD9_P8zbJlwggalpvKFMgFqezAnSKC17kHaaQdloguzYkdGLQLNtW1BLIQdXoAFwOBLWvu-a0pcqSMngarXj36L9LiJwcetdoNbBhstZb2RTPndH3z3Cw7x_sLVGYwyuG-x0KzwFVY/s400/Katies+8th+bday+018.jpg" alt="" id="BLOGGER_PHOTO_ID_5451247285782866082" border="0" /></a><br />Walking up to check out the ponies!<br /><br /></div><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOlcGiOadCfeoUKPn8J4eRhgpqfdXZqGbFMKRokh6x_ZEAncRP9_5z_kpKnAfVq4FhgGdrUpvlQFvPNIeEFCGKtU7hsP7VfPS_0y-z9xinr38jR46Q6ddt_mWO12RhP2-DANBBasyUuvA/s1600-h/Katies+8th+bday+030.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOlcGiOadCfeoUKPn8J4eRhgpqfdXZqGbFMKRokh6x_ZEAncRP9_5z_kpKnAfVq4FhgGdrUpvlQFvPNIeEFCGKtU7hsP7VfPS_0y-z9xinr38jR46Q6ddt_mWO12RhP2-DANBBasyUuvA/s400/Katies+8th+bday+030.jpg" alt="" id="BLOGGER_PHOTO_ID_5451247309218841586" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN9p1zcDtpbdpgOS3wdqMIpd0BGKA7m5w9OV2x2lH07oysNZNpBCxDMX3ME_hhpTi02p8GYwTFHXb4S7yUbByp6J0AtTq53fYWjS7w0Lq4IVvR1f0l0qUZL3pj4LFqYdCEMQC-iArDgqQ/s1600-h/Katies+8th+bday+029.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgN9p1zcDtpbdpgOS3wdqMIpd0BGKA7m5w9OV2x2lH07oysNZNpBCxDMX3ME_hhpTi02p8GYwTFHXb4S7yUbByp6J0AtTq53fYWjS7w0Lq4IVvR1f0l0qUZL3pj4LFqYdCEMQC-iArDgqQ/s400/Katies+8th+bday+029.jpg" alt="" id="BLOGGER_PHOTO_ID_5451247298169623394" border="0" /></a><br />Check me out!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ldEYpb_FFtzDiBV0ZblRFpAWnFf6Zg33QPkPjh4oGUPXh9MU-CL91pUuKvji3YAUepCNYMER1brLq_1fCjG9wigMO_R1bYKF09ezAFI5WZDLm8IVeagJRIMqookIoOda3G2qBXh2Ph0/s1600-h/Katies+8th+bday+027.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 376px; height: 336px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ldEYpb_FFtzDiBV0ZblRFpAWnFf6Zg33QPkPjh4oGUPXh9MU-CL91pUuKvji3YAUepCNYMER1brLq_1fCjG9wigMO_R1bYKF09ezAFI5WZDLm8IVeagJRIMqookIoOda3G2qBXh2Ph0/s400/Katies+8th+bday+027.jpg" alt="" id="BLOGGER_PHOTO_ID_5451247289072710514" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQgxdTRs4sRcZ3ayBDlWpOkq5r8ORcIzSyTBj0SGoJSACgtJniX1gfjt-mYDXq4uK6RIf7B0udEGYZOg8RGODz-tdxj2st8kFwsLz-WoU2QNGqF9uNfB6HHfDcLRqBfI5ZNRWiD4LkisM/s1600-h/Katies+8th+bday+009.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQgxdTRs4sRcZ3ayBDlWpOkq5r8ORcIzSyTBj0SGoJSACgtJniX1gfjt-mYDXq4uK6RIf7B0udEGYZOg8RGODz-tdxj2st8kFwsLz-WoU2QNGqF9uNfB6HHfDcLRqBfI5ZNRWiD4LkisM/s400/Katies+8th+bday+009.jpg" alt="" id="BLOGGER_PHOTO_ID_5451246406767278578" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit1zfwsi_aEcYnJAwPaAOeaRmJx893HhVjlSkLUBL46l8wALXU5F6w5nGoJfCiELGUSL2qUiXv3fo4Dw95DIyES9XtZV1aParB6zpqIwfmFHOGfc5WTgT4qgGh22wbELpy_MZczu_JhX8/s1600-h/Katies+8th+bday+013.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEit1zfwsi_aEcYnJAwPaAOeaRmJx893HhVjlSkLUBL46l8wALXU5F6w5nGoJfCiELGUSL2qUiXv3fo4Dw95DIyES9XtZV1aParB6zpqIwfmFHOGfc5WTgT4qgGh22wbELpy_MZczu_JhX8/s400/Katies+8th+bday+013.jpg" alt="" id="BLOGGER_PHOTO_ID_5451246427855488306" border="0" /></a><br />Best birthday present ever: A huge bouquet of balloooooooons!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-gYKdR7nKsRazTz3Scpz3ySWQrP3mB9qLUjPAzRKuGIyjllp490qinAA4xox4BnIcycaXEipdWETt3tl9sUOrJzYa1cx6Aj602NTir_liAlzrsqyBt169DJlwBKiWYCUa5AUhuDVFzZ0/s1600-h/Katies+8th+bday+008.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-gYKdR7nKsRazTz3Scpz3ySWQrP3mB9qLUjPAzRKuGIyjllp490qinAA4xox4BnIcycaXEipdWETt3tl9sUOrJzYa1cx6Aj602NTir_liAlzrsqyBt169DJlwBKiWYCUa5AUhuDVFzZ0/s400/Katies+8th+bday+008.jpg" alt="" id="BLOGGER_PHOTO_ID_5451246409538152546" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-2O2D8Bmqa016cquLkR10JNqGJzboXsxaFsEjGLQYI1HMcw-FHVDQsBsFu8HEknKUL0I9EHkZCKMqK-fXaJLBxXDPH-c4cDZlekGcuCxZ93Bz2SBheHlYucHJf7X6q_yO2ggsP6_p7To/s1600-h/Katies+8th+bday+006.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-2O2D8Bmqa016cquLkR10JNqGJzboXsxaFsEjGLQYI1HMcw-FHVDQsBsFu8HEknKUL0I9EHkZCKMqK-fXaJLBxXDPH-c4cDZlekGcuCxZ93Bz2SBheHlYucHJf7X6q_yO2ggsP6_p7To/s400/Katies+8th+bday+006.jpg" alt="" id="BLOGGER_PHOTO_ID_5451246424694624610" border="0" /></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-43029761765344245002010-03-15T16:40:00.000-07:002010-10-08T01:14:11.489-07:00Hope... and disappointment<p>A few months ago, Katie had a microarray and urinalysis done to look for genetic abnormalities. She has hallmark features of a genetic syndrome, like some of her (adorable) facial characteristics. So the microarray was a new hope as it would look for many different issues rather than only a narrow range of syndromes. It has been several years since she has had any genetic testing done, so I was hopeful that a new hospital, new geneticist, and new technology would give us a road map for Katie.</p><p><br /></p><p>No luck. Everything came back spotlessly "normal". Sometimes people say to me, "Oh, that's good!" I can't help but cringe. It is most definitely NOT good. There is clearly something hindering Katie's development, and it would be extremely helpful to know what that something is. I realize, as I have for many years now, that it IS good that she doesn't have an obvious, debilitating condition. I am grateful for her overall good health. </p><p><br /></p><p>But it would be so nice to know what to look out for and to know what challenges might be waiting down the road for us so that we can be prepared and proactive. I know that a diagnosis would not reduce her need for physical, occupational, and speech therapy. I know it won't magically make her "better". I just find it so hard not to have a name for the syndrome that has made life difficult for my daughter and has changed motherhood as I anticipated it. </p><p><br /></p><p>Sometimes it may seem selfish that I wish to have a diagnosis to "blame" for Katie's disability. But I would much rather look at a syndrome with frustration than to have someone say "Well, that's just <strong>Katie</strong>". It isn't Katie. It is what has trapped her in this little body and stripped her of her ability to speak, run, and do the other things that life offers. I see the beauty in her little face and fantastic personality. I see how she shows love and joy so easily. But I also see her struggle and get frustrated at this world that is sometimes so hard to understand. Hopefully someday we will have a diagnosis for that. </p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-10386171984823175822010-02-18T19:07:00.000-08:002010-02-18T19:32:14.711-08:00Controlled chaos...I am embarking on a new journey... Housekeeping! For many years I would say that the house "kept" me, and not the other way around. I was not born blessed as a clean freak, and have a certain sentimental magnetism toward clutter. Even as a child I felt guilty if my toys were not played with equally, and felt even worse getting rid of them. (I cried like a baby watching Toy Story II when the cowgirl doll sings about <a href="http://www.youtube.com/watch?v=px0j1EHF8Y0">"When she loved me</a>"... okay may have been a little stressed and/or exhausted at that point too...) So I have decided enough is enough. The stress of living in a small apartment with all of this stuff is too much to be worth keeping things. Now don't fret, I won't end up on an episode of <a href="http://www.aetv.com/hoarders/">"Hoarders"</a> anytime soon.... but when the bathroom counter is so overrun by barely used cosmetics that it can only dream of being cleaned, it's time to de-clutter!<br /><br />I started by ordering two books from <a href="http://www.amazon.com/">amazon</a>. One that is "tried and true"--my mom used the original version when I was a kid! (see this thing is genetic, I tell ya)<span style="font-size:100%;"><span id="btAsinTitle" style=""> <a href="http://www.amazon.com/New-Messies-Manual-Procrastinators-Housekeeping/dp/0800757262">The New Messies Manual: The Procrastinator's Guide to Good Housekeeping</a></span></span>... And another that appealed to me as a former working mom who had no idea how to become a stay at home mama "<span style="font-size:100%;"><a style="font-family: georgia;" href="http://www.alanamorales.com/book.htm">Domestically Challenged: A Working Mom's Survival Guide to Becoming A Stay At Home Mom</a></span> . The second arrived first, and after reading about halfway through it, I stopped. I had just gotten to the good stuff, where she discusses actual strategy... but the first half of the book seemed to have one message: Get over it, you are not going to become a domestic diva anytime this millennium. Get used to being in your pjs at 2pm with a filthy house and screaming banshee children. Tell your husband to pick up the slack. Thankfully about the time I stopped reading this one, the first book arrived to save the day.<br /><br />I absolutely love the New Messie's Manual, and even though I am extremely resistant to change, I feel a definite ray of hope in her writing. The classic "Messie" she describes fits me to a T. I'm sitting here wondering why I'm admitting this... Hmm.... Well maybe to find a kindred soul or to let other closet "messies" know they are not alone nor are they defective!<br /><br />I look at my home and I see things I have never seen before. And I don't just mean the floor! I see potential... Shayne says it's like the mess blob monster that had previously consumed our apartment is receding and leaving order and cleanliness behind it. Others may still see controlled chaos at this point, and I'm okay with that. I'm not inviting any of you in. Ha! But it is so relaxing to have a clean sink, empty of dishes to start the day, clean clothes without hunting, and enjoying a seat on the couch! I realize now that if I do a little every day, then cleaning for company or what have you is not such a herculean task! I have 3 boxes to take to Goodwill, which I normally save stuff for "people" that the ideal giftee never gets found and the stuff stays..... so this is a good change for me.<br /><br />I have never felt so relieved by getting rid of stuff and having a structured cleaning schedule. It really doesn't take nearly as long as I previously told myself... and I really love the change! Change is gooooood.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8946331442834464301.post-81197253906706030732010-02-05T20:01:00.000-08:002010-02-05T20:15:42.592-08:00An Open Letter to My LoveDear Shayne,<br /><br />I know this has been an interesting transition for you to say the least. I know I let you down sometimes, like today when I drank your Cherry Coke Zero... the very same one I bought for you at Walgreen's last night. I couldn't help myself. It has been a rough day, and I needed its fizzy comfort. I hope you did notice though that the house was picked up (not sparkling by any means), the dishes were done, Katie's massive toy collection picked up, and dinner was hot and ready when you got home. I also did some tidying in our room, and put the "new" nightstand I got from Goodwill a couple of days ago and have been hiding in my car by your side of the bed. It was a great bargain and it looks so nice there. I also hung up and rearranged some pictures in our room. I think it looks better than ever.<br /><br />I am amazed that I got as much done as I did... I had Miss Crankypants to entertain all day as she hasn't been feeling well. My mouth feels like it's been through a meat tenderizer from being probed by frustrated little fingers who have no other means to communicate discomfort. I have had my hair pulled, been bitten, and just feel like a punching bag from the fun today. Little Miss did NOT take a nap today though it would have been much needed respite for the both of us. She is now in her bed, ready to crash but fighting it all the way... Running her Thomas the Train across the wall, no doubt irritating the hell out of the neighbors, and I don't have the energy to care. I have not showered in 2 days as I have been on high alert for vomiting since she threw up in her sleep on Thursday. You and I both know how little warning comes before one of those spells. I want to punch her GI doc in the face for being so apathetic about it. <br /><br />My dearest Shayne... thank you for supporting us and supporting me, emotionally through all of this. I cannot expect you to be grateful to me for taking care of a child that doesn't belong to you. But she is my beloved and I appreciate your understanding and grace. Grace for the fact that this little person doesn't make life easy for us. The couch is now virtually uninhabitable for all but the sturdiest of constitutions thanks to her leaky pullups.... I really do plan on figuring out how to fix that problem in the near future. Thank you for loving me even when the woman you come home to is an attention-starved, overstimulated noodlehead who desperately needs some adult conversation, alone-time, and of course serious hygiene help.<br /><br />I am grateful for you and to you for all that you do. You are a blessing and a wonderful man.<br />I love you.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8946331442834464301.post-51185777269222799102010-01-24T15:41:00.000-08:002010-01-24T16:26:07.939-08:00Why I'm a bad blogger<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio4yQfD8qFN7m7wuv_RRwbcvlZXib_LL2ksuncv6V8-I3_MYjiayhIbgEkY-lHfAONo2rVCRA7B3vMx1E_tEP93Q2wofddLixADCr0vFOumJd7RlADe-KbAE-bqoUFrJUSuV5F2fBF5zM/s1600-h/Christmas+2009+042.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio4yQfD8qFN7m7wuv_RRwbcvlZXib_LL2ksuncv6V8-I3_MYjiayhIbgEkY-lHfAONo2rVCRA7B3vMx1E_tEP93Q2wofddLixADCr0vFOumJd7RlADe-KbAE-bqoUFrJUSuV5F2fBF5zM/s320/Christmas+2009+042.jpg" alt="" id="BLOGGER_PHOTO_ID_5430458402263639634" border="0" /></a>I have figured out why I am so bad at blogging/journaling/etc... pretty much anything that takes a daily reflection... Usually I do my thinking as I lay down for much needed rest or while I'm driving. Neither situation lends itself well to blogging! When I am in bed my thoughts seem so eloquent and well organized, but there is nothing anyone could do short of a fire or Katie emergency that would pry me from the warmth of my covers... I can jot down ideas in the car while at a stoplight, but I really think I do my best thinking far from any record keeping materials! (delusional? maybe...)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifd0EXzxhhlCInsZEN1GhLzZ09Z82LOm7lBTitSBiAuSs1ROnTt9-bsfItL6hDNAwN83_rTWJjQYSPbOI6Qmpjl5VE9u6ol9xRNmEyjlfA3dFztKe2_IiBV0kvKWENHML4CR1cqo_bbps/s1600-h/Christmas+2009+026.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 278px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifd0EXzxhhlCInsZEN1GhLzZ09Z82LOm7lBTitSBiAuSs1ROnTt9-bsfItL6hDNAwN83_rTWJjQYSPbOI6Qmpjl5VE9u6ol9xRNmEyjlfA3dFztKe2_IiBV0kvKWENHML4CR1cqo_bbps/s320/Christmas+2009+026.jpg" alt="" id="BLOGGER_PHOTO_ID_5430458397893226514" border="0" /></a><br />But I was thinking about small blessings the other day, and what a bizarre blessing Katie's absence seizures can be. Sometimes she is upset or insisting on something that she simply can't have and she has a seizure. This gives me time to adjust her view when she "comes back" to entice her to something different. Sneaky? Definitely. Evil? Only slightly. Sometimes I need a break from the tantrum too, and her seizures give me time to take a deep breath, hold her, and kiss her sweet face until she resumes the "conversation". Those conversations don't involve words but hair pulling, pinching, and biting if an ample body part is available.<br /><br />These things don't happen too often or with too much fervor, but when they do, it reminds me of her disability and frustrates me that she cannot tell me what she wants. Sometimes I know what she wants but there seems to be little reasoning with her. Diversion works fairly well, but I worry that it only fixes the situation momentarily and does nothing to teach her how to be patient or any other skills she will need in life.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjye6kGkY1bs6dT1L820Nmsq2fM144YNIz0w4sD7bE8zCVcxiaY8-J_5QkSbU9VIOoF_oeyMkGDypuL3ydpZaBXTVa3TlrhWiWyoF8E2d8kYCbDR9qT5k5Qk5qZnV5F_baSIaGBxhluHwI/s1600-h/Christmas+2009+013.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 246px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjye6kGkY1bs6dT1L820Nmsq2fM144YNIz0w4sD7bE8zCVcxiaY8-J_5QkSbU9VIOoF_oeyMkGDypuL3ydpZaBXTVa3TlrhWiWyoF8E2d8kYCbDR9qT5k5Qk5qZnV5F_baSIaGBxhluHwI/s320/Christmas+2009+013.jpg" alt="" id="BLOGGER_PHOTO_ID_5430458389266199874" border="0" /></a><br />That being said, we are going to meet with a child psychologist who may give more insight into her behaviors (both self injurious and otherwise). A nurse suggested soft restraints to which I almost hung up the phone on her, but nonetheless I want to make progress in teaching Katie to understand this world and interact in a meaningful way.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU_4dhAV2ZjXxCNw4C-6g619aCr7D-38dl3MBq9vtTKX1EFEfot-xhHob-Aqob_Ws0ofa7oLJ27spbyhQm43gTN7Ng6s_Hh33AeA0YAEIbcLnH2OELzpBoW4z8RmCgPxheIzOZfuDJDjo/s1600-h/Christmas+2009+006.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 285px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU_4dhAV2ZjXxCNw4C-6g619aCr7D-38dl3MBq9vtTKX1EFEfot-xhHob-Aqob_Ws0ofa7oLJ27spbyhQm43gTN7Ng6s_Hh33AeA0YAEIbcLnH2OELzpBoW4z8RmCgPxheIzOZfuDJDjo/s320/Christmas+2009+006.jpg" alt="" id="BLOGGER_PHOTO_ID_5430458388010720034" border="0" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-28042843181949524072009-12-08T19:57:00.000-08:002009-12-08T20:10:52.321-08:00Feeling InadequateI have been feeling a little down lately. Kind of like an inadequate piece of crap, really. Not by the influence of anyone outside of myself but by my own admonishments. I never have the energy I feel that I need to get through a productive day. I push myself when people are around, but I struggle so much with fatigue and lack of motivation. I don't know that I'm "saving it up" like I sometimes hope, because when I *really* need it, it <span style="font-style: italic;">is </span>there.... But where is it the rest of the time? <br /><br />I think we're getting a cold. (we meaning my little household--myself, Katie, and my boyfriend)... She is not nearly as lethargic as I am. I feel like I could sleep for 24 hours. Sadly, I probably could if I had the chance.... The dishes are piling up in the sink, the laundry is awaiting transport from the washer to the dryer. And I just can't care. Katie has been happy and cuddly for the most part... No worse for the wear as they say. But we could both use a bath! <br /><br />I stumbled across <a href="http://www.caringbridge.org/visit/katherinewolf">Katherine Wolf's story </a>today, thanks to <a href="www.nieniedialogues.com">Nienie's blog</a>.... All I can say is wow. Both of these women are close in age to me, yet I feel like they are decades wiser. Something happens to you, I think, when your life is forcibly simplified like it was for these two women. Survival was first and foremost, and family a close second. I still get distracted by friends, projects, appearances, material things.... etc. I do not <span style="font-style: italic;">of course</span> wish for a life threatening experience, but I do wish I could channel the focus and simplicity that results from these events. <br /><br />Sometimes with Katie's challenges I chastise myself for desiring a more "normal" life. To pretend like my daughter doesn't struggle to communicate or require my constant attention to survive. Any fantasy I have always has to wake up to the reality that this is not my life. What Katie and I face is <span style="font-style: italic;">our</span> life. And it is beautiful. It isn't as hard as it could be. I really do wish I wasn't so tired all the time. I wish I was a better housekeeper. I wish I made all the phone calls I need to make, cleaned out my car, and dealt with sorting the laundry <span style="font-style: italic;">before</span> it became a pile on the floor. But grace and God allow me the truth that Katie is healthy, happy, and blissfully unaware of her mother's shortcomings! And her happiness is truly all that matters. Because when baby's happy, Mama's happy! <br /><br /><br />**I love what Katherine says in her journal about trials and struggles.... and about "Using the Good Stuff"--a philosophy I have always subscribed to!<br /><p class="MsoNormal" style="margin: 0in 0in 10pt; line-height: normal;"><span style="font-family: 'andale mono',times;"><strong><span style="color: rgb(0, 0, 0);"><span style="font-size: small;">Suffe<wbr><span class="wbr"></span>ring is Universal</span></span></strong></span></p> <p class="MsoNormal" style="margin: 0in 0in 0pt; background: rgb(255, 255, 255) none repeat scroll 0% 0%; line-height: normal; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;"><span style="font-family: 'andale mono',times;"><strong><span style="color: rgb(0, 0, 0); font-size: 12pt;"> <wbr><span class="wbr"></span></span></strong></span></p> <p class="MsoNormal" style="margin: 0in 0in 0pt; background: rgb(255, 255, 255) none repeat scroll 0% 0%; line-height: normal; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;"><span style="color: rgb(0, 0, 0); font-size: 12pt;"><span style="font-family: 'andale mono',times;">I consider my greatest fault/chara<wbr><span class="wbr"></span>cter flaw/sin to be my extreme naiveté; however, I am not naïve to the fact that everyone around me is suffering through something right now. I am not the only one going through a lot. While my situation is extreme, we all face difficult trials every day. Clearly, you don’t have to be experiencin<wbr><span class="wbr"></span>g a major medical issue to be able to understand suffering. There are hard and sad things in this world that are awful and painful. There are children who are abused; there is homelessnes<wbr><span class="wbr"></span>s and people who go to bed hungry. There are unmet expectation<wbr><span class="wbr"></span>s and broken relationshi<wbr><span class="wbr"></span>ps. People have affairs. Parents divorce. There is disease, and there are freak accidents. Women miscarry, and couples can’t get pregnant. People die. Life is hard, no matter who you are. Because of this, we need to give each other slack (because we often never know what someone else is going through deep inside), spread love over everyone in our lives, and find hope in the Lord’s promise that our suffering is never in vain.</span></span></p><p class="MsoNormal" style="margin: 0in 0in 0pt; background: rgb(255, 255, 255) none repeat scroll 0% 0%; line-height: normal; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;"><br /><span style="color: rgb(0, 0, 0); font-size: 12pt;"><span style="font-family: 'andale mono',times;"></span></span></p><br /><p class="MsoNormal" style="margin: 0in 0in 10pt; line-height: normal;"><strong><span style="font-family: 'Bodoni MT',serif; color: rgb(0, 0, 0); font-size: 12pt;">Use the Good Stuff</span></strong></p> <p class="MsoNormal" style="margin: 0in 0in 10pt; line-height: normal;"><span style="font-family: 'Bodoni MT',serif; color: rgb(0, 0, 0);"><span style="font-size: small;"><span style="font-family: 'andale mono',times;">Patty Roper, Joanna Martin, Brenda See and their daughters threw me a lovely “Paper and Linen” Shower in Montgomery (it was the first of 13 parties before I got married –I’m not kidding). As the hostess gift, they gave me a gorgeous set of monogrammed sheets. I was saving them to use when we had our own home. Had I died last April, I would have NEVER used those sheets. They would have been saved for 4 years for nothing! I think my situation points to the fact that you should use the good stuff and do all those things you have always wanted to do. Who cares if the baby might stain it or something gets broken. It’s definitely better to find enjoyment in special things now then feeling regretful for having those things sit, uselessly in a closet, never being used and enjoyed. We are not promised tomorrow, and we need to live like it is our last today and celebrate the gift of each day.</span></span></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-88842557301475592822009-11-03T08:40:00.000-08:002009-11-03T08:46:50.476-08:00Goals<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVR5wyc7WLjguUWUdrrfgT7B9CNbZ7JbZk02u3-SR4GRVODUdIHPYqKl7gvKV9BvC5FSG4BHKq3Psy9z4MW6QON_qFNVsPgJ-lzasAbkJkLgnzI7UnMSDwEGEidXLNw3Qkl4GX9KSK4lU/s1600-h/Halloween+2009+045.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVR5wyc7WLjguUWUdrrfgT7B9CNbZ7JbZk02u3-SR4GRVODUdIHPYqKl7gvKV9BvC5FSG4BHKq3Psy9z4MW6QON_qFNVsPgJ-lzasAbkJkLgnzI7UnMSDwEGEidXLNw3Qkl4GX9KSK4lU/s320/Halloween+2009+045.jpg" alt="" id="BLOGGER_PHOTO_ID_5399919773293580066" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />It is hard as a parent of a child with special needs to figure out which goals are appropriate. To realize that your child's potential may be limited is extremely painful. To realize that the burden of their potential is directly on you can be at times catalyzing and paralyzing. I have found that setting goals for myself and what behavior I would like to have is much more fulfilling than setting goals for Katie that she may never reach.<br /><br />However, I still hope that someday she will be able to communicate more with me, with words or pictures, whatever form it may be. I hope that she will continue to progress, as slow as it has been, toward some level of independence.<br /><br />But for now, and on days when I do not wish to be a therapist but a mom... My goal is simply for her happiness. For each day to be as fulfilling and content for her as possible. I hope to enrich her life by exposing her to new experiences and places.... To do whatever it is that makes her happy, in the moment. And worry about tomorrow, well, tomorrow.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-52887329812968377352009-10-31T21:09:00.000-07:002009-10-31T21:18:09.709-07:00Halloweeeeeen<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XQIQsHHgD8LprLPoYjcQMKUdPSU3oskDK_a8CHQARM6pZw-AITk_HKDbVDzI-3lJL3ALuGH12DlRr0EZ5D3DPSowT5WyvDastzW4_ypJ6hd8AM57ByYIqDxzK-y7jkPgYALGpo1zFTM/s1600-h/Halloween+2009+090.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1XQIQsHHgD8LprLPoYjcQMKUdPSU3oskDK_a8CHQARM6pZw-AITk_HKDbVDzI-3lJL3ALuGH12DlRr0EZ5D3DPSowT5WyvDastzW4_ypJ6hd8AM57ByYIqDxzK-y7jkPgYALGpo1zFTM/s320/Halloween+2009+090.jpg" alt="" id="BLOGGER_PHOTO_ID_5398984577707055362" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyH-jwMQEmU5b1m06nO00oiwCUnXDtcdjJXW_WgunV0Sdt6eYBEvsFCE9WIj2tH24kZfESV8ifzpCTvAEwphkHx1gdRq90N_KIqDjPZWLD0CJDvan6-0Smt0ZgKwG0w6nr4027NL5Fgu0/s1600-h/Halloween+2009+089.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyH-jwMQEmU5b1m06nO00oiwCUnXDtcdjJXW_WgunV0Sdt6eYBEvsFCE9WIj2tH24kZfESV8ifzpCTvAEwphkHx1gdRq90N_KIqDjPZWLD0CJDvan6-0Smt0ZgKwG0w6nr4027NL5Fgu0/s320/Halloween+2009+089.jpg" alt="" id="BLOGGER_PHOTO_ID_5398984574428362610" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjafcCXdBlp8eTxxwlGHKXH9Wbznww3TkdN9qoqyqR_i5Jb918vECI-KcbiPU-hQxNfle4OJAeHHyFrj37qD76CbgzLG2quvlyzZjI18N4m65MZ1wsur5D7ny9nOFerMcIaQcy4KOxvLdQ/s1600-h/Halloween+2009+082.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjafcCXdBlp8eTxxwlGHKXH9Wbznww3TkdN9qoqyqR_i5Jb918vECI-KcbiPU-hQxNfle4OJAeHHyFrj37qD76CbgzLG2quvlyzZjI18N4m65MZ1wsur5D7ny9nOFerMcIaQcy4KOxvLdQ/s320/Halloween+2009+082.jpg" alt="" id="BLOGGER_PHOTO_ID_5398984566263990130" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Qs_ugOrNx9_Pj1WhOw7jqlCjFbd_92yRhGMte43bhUnD2vejin9a4kYsf9aJlJjDk1hOg7BKmHZUlWIDb2ChhY7UXAV9kE5JkPhHWEEbzyrJyrWNAuuQ3gLKaCHmA56lHyeLuoKo-24/s1600-h/Halloween+2009+079.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Qs_ugOrNx9_Pj1WhOw7jqlCjFbd_92yRhGMte43bhUnD2vejin9a4kYsf9aJlJjDk1hOg7BKmHZUlWIDb2ChhY7UXAV9kE5JkPhHWEEbzyrJyrWNAuuQ3gLKaCHmA56lHyeLuoKo-24/s320/Halloween+2009+079.jpg" alt="" id="BLOGGER_PHOTO_ID_5398984562338490146" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbcDW94oRXL2qBPtRpIuRsqzU3mU-GlZSSqfCFChnwfgx5zrhIS48Ijvg3Wksbz3dr0zO0VCUSgiMc5DnahmJCf17BGwTJcDo3SMoiL3z5g0om_gXSa7ySusKxI6qbw4v-nAtAhk-BT18/s1600-h/Halloween+2009+078.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbcDW94oRXL2qBPtRpIuRsqzU3mU-GlZSSqfCFChnwfgx5zrhIS48Ijvg3Wksbz3dr0zO0VCUSgiMc5DnahmJCf17BGwTJcDo3SMoiL3z5g0om_gXSa7ySusKxI6qbw4v-nAtAhk-BT18/s320/Halloween+2009+078.jpg" alt="" id="BLOGGER_PHOTO_ID_5398984557701581330" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNJRmB7HbPqHULFGr6uwqt_sOmIEX36LmE8Iwz04PgnK3asDblLxouGlV3mvq_hh7yUd3VbGN10P5cw_He9rliQhMXsCzorHZmZ62iumOfodGunJ8NfgNLUFjusKg58LI8ZgY5tW1Mcs/s1600-h/Halloween+2009+071.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNJRmB7HbPqHULFGr6uwqt_sOmIEX36LmE8Iwz04PgnK3asDblLxouGlV3mvq_hh7yUd3VbGN10P5cw_He9rliQhMXsCzorHZmZ62iumOfodGunJ8NfgNLUFjusKg58LI8ZgY5tW1Mcs/s320/Halloween+2009+071.jpg" alt="" id="BLOGGER_PHOTO_ID_5398983602759210018" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVVe3oI6T52q8Bx5YVUTZ3oErJ7IgtcYQLlOw6bzC31bXipfz85w-EgqD_yjkwe9UrFSKi2AGga_w2LwbiAqUmCj7iNjIU480H9TWOuJSe2Ov7LB_Azjt1nwQc0PxSYxlvyGPUeU3N9_k/s1600-h/Halloween+2009+069.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVVe3oI6T52q8Bx5YVUTZ3oErJ7IgtcYQLlOw6bzC31bXipfz85w-EgqD_yjkwe9UrFSKi2AGga_w2LwbiAqUmCj7iNjIU480H9TWOuJSe2Ov7LB_Azjt1nwQc0PxSYxlvyGPUeU3N9_k/s320/Halloween+2009+069.jpg" alt="" id="BLOGGER_PHOTO_ID_5398983599373386402" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdyr6pEWW4oJ1hVAUwNzPHF9BHB3w6AovaJwHapiPW2E_dlJGiSUvSFRvVvXOvh3ru-dv5OExaa8mc2b1Zo1npo-C0cAMd8i19ckJMl0rBlriqaANhkWzPJ6Cxi3oJx0PRFXx-DCdSCM/s1600-h/Halloween+2009+067.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmdyr6pEWW4oJ1hVAUwNzPHF9BHB3w6AovaJwHapiPW2E_dlJGiSUvSFRvVvXOvh3ru-dv5OExaa8mc2b1Zo1npo-C0cAMd8i19ckJMl0rBlriqaANhkWzPJ6Cxi3oJx0PRFXx-DCdSCM/s320/Halloween+2009+067.jpg" alt="" id="BLOGGER_PHOTO_ID_5398983595714496994" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRU7SZiMGmVjdwawgzAfMX_pyT-FpUrUXhLmzYICwJpepRaStdB0zJt0kIR5lO3hDjW1eS2FUQ0Zqd_yVtti7SyA6vEDrnfDBN9j8ffxnpLMbYvCgoSl-EOM7SiMRqKJRMtjGyH8yRVk/s1600-h/Halloween+2009+065.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGRU7SZiMGmVjdwawgzAfMX_pyT-FpUrUXhLmzYICwJpepRaStdB0zJt0kIR5lO3hDjW1eS2FUQ0Zqd_yVtti7SyA6vEDrnfDBN9j8ffxnpLMbYvCgoSl-EOM7SiMRqKJRMtjGyH8yRVk/s320/Halloween+2009+065.jpg" alt="" id="BLOGGER_PHOTO_ID_5398983591139310290" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5m2964qswAJpt_SYQIvLj5c3Yjpx_yK3sR6TaFv1opDwohXELwO_oCiR5zy9oGddoxXmKzJNEHMGV2zbI0PxAzX12ZdN6QyfSj5R4kJsYI5gxC9Ck6LOd6kNKMZOgTlE6Zw_tmR7AjOc/s1600-h/Halloween+2009+063.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5m2964qswAJpt_SYQIvLj5c3Yjpx_yK3sR6TaFv1opDwohXELwO_oCiR5zy9oGddoxXmKzJNEHMGV2zbI0PxAzX12ZdN6QyfSj5R4kJsYI5gxC9Ck6LOd6kNKMZOgTlE6Zw_tmR7AjOc/s320/Halloween+2009+063.jpg" alt="" id="BLOGGER_PHOTO_ID_5398983588792357618" border="0" /></a><br />Took Katie to the mall to do the "trick or treat" thing... She really had a blast, and she got a lot of exercise! She enjoys walking at the mall because there is so much to look at. Tonight's Halloween festivities didn't seem to overwhelm her nearly as much as they overstimulated me!! She was so cute! Lots of compliments on the dress I made for her. She is the perfect princess!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-88665829294959347672009-10-24T23:20:00.001-07:002009-10-24T23:29:52.739-07:00Punkin Patch 2009!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEGHRwbCvWt9TwEabKwaZwsAGp8R6UUo6Es7sSmxrF2ZleecTw-RgArOEFHdLPY4fDsc2swwe1f8wMafiVPtBsO8BFMvukI7CwzMxdhn8Py_24gQnqXpMhNRSeihqoLaejfdQkm_vku0o/s1600-h/Punkin+Patch+09+059.jpg"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEGHRwbCvWt9TwEabKwaZwsAGp8R6UUo6Es7sSmxrF2ZleecTw-RgArOEFHdLPY4fDsc2swwe1f8wMafiVPtBsO8BFMvukI7CwzMxdhn8Py_24gQnqXpMhNRSeihqoLaejfdQkm_vku0o/s320/Punkin+Patch+09+059.jpg" alt="" id="BLOGGER_PHOTO_ID_5396420816749163490" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglQ5hIUkl16PJq-XaO4gh-RaujCSMpK9-uxxn0r_Up1FLrcMvyrDsJsFmn5srnT_dBv_qs-c_XcTnt1yrJf-FSzagYosvxpjJnXjXlRZj_jPTlFL4XsYcyvfXuBeaL_9mfagzQh3_8Ozw/s1600-h/Punkin+Patch+09+017.jpg"><img style="cursor: pointer; 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Cupcake Camp benefit for the ARC!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix3y5MVFCjoNX-QKOP_8RSJwBfZDMsgjQBBbvyjNIV9exIyFUVwhsS1dKECgKLnB1ZnKgDVqORG3BIbJrxQruNSWv7ftEyh3GoBWyIMZ16tlncyCLM1R5xvzp3NwQ2n0tF6gROFp-oTr0/s1600-h/cupcake+camp+sean+wedding+120.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 274px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix3y5MVFCjoNX-QKOP_8RSJwBfZDMsgjQBBbvyjNIV9exIyFUVwhsS1dKECgKLnB1ZnKgDVqORG3BIbJrxQruNSWv7ftEyh3GoBWyIMZ16tlncyCLM1R5xvzp3NwQ2n0tF6gROFp-oTr0/s320/cupcake+camp+sean+wedding+120.jpg" alt="" id="BLOGGER_PHOTO_ID_5393774006194875266" border="0" /></a><br /><br />A little bit of sugar goes a looooooooong way. Please god grant me the serenity to accept the calories I ate, and the strength to avoid the cupcakes that remain!!!<br /><br />Our local ARC had a fundraiser called "Cupcake Camp". I made cupcakes to enter in the "Tasty Cupcake" category. Didn't win... <span style="font-style: italic;">this year</span>.... But I had a blast making my display and of course, eating more sugar than the human body can handle! Here's a photo "essay" of my journey:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKIhaWDG0qETLvpYVvmq0RIWZQl9Lj25CnSPvWdBBaChXRGH7PLQBAeszTD1dlMBAA4ZGogVuvuWm-gxiQHD53d1iAtVC6auLy25Z70BLdtsMsSy0YZ4RX5QsIDn0OafgycwevjvQK8PU/s1600-h/cupcake+camp+sean+wedding+058.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKIhaWDG0qETLvpYVvmq0RIWZQl9Lj25CnSPvWdBBaChXRGH7PLQBAeszTD1dlMBAA4ZGogVuvuWm-gxiQHD53d1iAtVC6auLy25Z70BLdtsMsSy0YZ4RX5QsIDn0OafgycwevjvQK8PU/s320/cupcake+camp+sean+wedding+058.jpg" alt="" id="BLOGGER_PHOTO_ID_5393771997077593042" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ47WCkxbX00yeYv1LQoN1q4OHK2R9-2l-uret3ksbsubCfXhX3cffJ-d-CnLcTfxYs-IpMP7jVwOSQrDvltLLT7VdYY6t3tZLNjy6VYInHgBY-pK4FRsc_LdQT7ba2YxNg_KNLwftoKg/s1600-h/cupcake+camp+sean+wedding+027.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ47WCkxbX00yeYv1LQoN1q4OHK2R9-2l-uret3ksbsubCfXhX3cffJ-d-CnLcTfxYs-IpMP7jVwOSQrDvltLLT7VdYY6t3tZLNjy6VYInHgBY-pK4FRsc_LdQT7ba2YxNg_KNLwftoKg/s320/cupcake+camp+sean+wedding+027.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772005677092450" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNdXiiY5FOHPSc0nTVVjgdKaKI_39fFqtMZzFXbS98JfBLeFrLzxRtixIsYaY4Kih5f-eHfkehR3F19U4kVjBcOKIOf5NZYmzWWw-BvHi66wclt8MF1rh74RiPJ5y7LwXKUU4PRbUT-W0/s1600-h/cupcake+camp+sean+wedding+021.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNdXiiY5FOHPSc0nTVVjgdKaKI_39fFqtMZzFXbS98JfBLeFrLzxRtixIsYaY4Kih5f-eHfkehR3F19U4kVjBcOKIOf5NZYmzWWw-BvHi66wclt8MF1rh74RiPJ5y7LwXKUU4PRbUT-W0/s320/cupcake+camp+sean+wedding+021.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772011120531026" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUb8Qjl7NZB8jpsi7CQwzsQfSSEEfknSzHdyzEfOfSk0AbJJ3vjLw9YWZyo9m-OUBvLDA4aZStHfY0Hf2jkQTC6rm2qHmIWFYQ-yXPVCi2umb_OhN8CP0tYUQWppGvpvop0qfWpJ2KWZ0/s1600-h/cupcake+camp+sean+wedding+063.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUb8Qjl7NZB8jpsi7CQwzsQfSSEEfknSzHdyzEfOfSk0AbJJ3vjLw9YWZyo9m-OUBvLDA4aZStHfY0Hf2jkQTC6rm2qHmIWFYQ-yXPVCi2umb_OhN8CP0tYUQWppGvpvop0qfWpJ2KWZ0/s320/cupcake+camp+sean+wedding+063.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772016672833058" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq6bdBCeDwibb8uI1kFVS3MrSZYlB7-_6WkUJAHFHHV3nZ1zzhRG78e3jkquBuszPE0sj-_dlX4zHcXt3CbegimzBFYC6jZZojkJEw4HPUjhZ3dTjPdBAPoKb0yrAXlcgi9-oDYi3ntn0/s1600-h/cupcake+camp+sean+wedding+072.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq6bdBCeDwibb8uI1kFVS3MrSZYlB7-_6WkUJAHFHHV3nZ1zzhRG78e3jkquBuszPE0sj-_dlX4zHcXt3CbegimzBFYC6jZZojkJEw4HPUjhZ3dTjPdBAPoKb0yrAXlcgi9-oDYi3ntn0/s320/cupcake+camp+sean+wedding+072.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772021961749122" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuX9oVfxHxBqTi0oc5ycmJ55Gs5HLtok-_KidIJoBawZoQbiPcJQBup-kgmd17YmCPy-Q5kj2PGR0e5lotD9TnUN612NKwK2f9LA-356hL84gUiZpkrg7eXUsfe4rLaBFdJ1HcgV2KRd8/s1600-h/cupcake+camp+sean+wedding+088.jpg"><img style="cursor: pointer; width: 234px; height: 312px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuX9oVfxHxBqTi0oc5ycmJ55Gs5HLtok-_KidIJoBawZoQbiPcJQBup-kgmd17YmCPy-Q5kj2PGR0e5lotD9TnUN612NKwK2f9LA-356hL84gUiZpkrg7eXUsfe4rLaBFdJ1HcgV2KRd8/s320/cupcake+camp+sean+wedding+088.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772625731760866" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtnUFUvpH0sbnn-9v3vFdTDaJGzkUZsNFi_RB0o1kG-RPTykyq8dsbH5-jboNcLV-yhxWGFYJrBpn7aY8bHYrOn6_cLhNPqe27gJFRyPdeqAB1hF-njWub21VuffO46vyzVWNDVR-14KM/s1600-h/cupcake+camp+sean+wedding+091.jpg"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtnUFUvpH0sbnn-9v3vFdTDaJGzkUZsNFi_RB0o1kG-RPTykyq8dsbH5-jboNcLV-yhxWGFYJrBpn7aY8bHYrOn6_cLhNPqe27gJFRyPdeqAB1hF-njWub21VuffO46vyzVWNDVR-14KM/s320/cupcake+camp+sean+wedding+091.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772635560099746" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiBM-SdzuWXOUBc8T8u7uoqXfw8B6uQyZStlOusHLptRvMDNcYQN9NT81v6c6FeoKQFI2Kx4dRJubGGIgoYN83IxiUyvwdwEgdT-2KjMVmUAKx9LM39leu8EVfg6IsXOXJYEpjmWGLRqA/s1600-h/cupcake+camp+sean+wedding+093.jpg"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiBM-SdzuWXOUBc8T8u7uoqXfw8B6uQyZStlOusHLptRvMDNcYQN9NT81v6c6FeoKQFI2Kx4dRJubGGIgoYN83IxiUyvwdwEgdT-2KjMVmUAKx9LM39leu8EVfg6IsXOXJYEpjmWGLRqA/s320/cupcake+camp+sean+wedding+093.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772647048649138" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6m5yfKn1cxJ6vsVSPyGe7h5cJVKRLeWi8EEX7WrRPmo2ANHBd-PE1LpLQuTD6HpaVjJctyUQ8eIvGGll8d4bsEIK0RKQStZ-_QmBlcBlPE6llckchztUr7bQst4mIipIt7M_U9wUJW34/s1600-h/cupcake+camp+sean+wedding+089.jpg"><img style="cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6m5yfKn1cxJ6vsVSPyGe7h5cJVKRLeWi8EEX7WrRPmo2ANHBd-PE1LpLQuTD6HpaVjJctyUQ8eIvGGll8d4bsEIK0RKQStZ-_QmBlcBlPE6llckchztUr7bQst4mIipIt7M_U9wUJW34/s320/cupcake+camp+sean+wedding+089.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772644915683538" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPcr8RcHvSoOSu283FVJv_FJN26EgbxUKpKyp5ZBy9fk7VVjcS5aBnqN_91Xh-IoA_jtfHlOSHGZ1un1D5UFu4zS4M4IbIlay5zzowXhCiFycTASzKe50AocIGL03_oJggsZsFD1Zfqn8/s1600-h/cupcake+camp+sean+wedding+108.jpg"><img style="cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPcr8RcHvSoOSu283FVJv_FJN26EgbxUKpKyp5ZBy9fk7VVjcS5aBnqN_91Xh-IoA_jtfHlOSHGZ1un1D5UFu4zS4M4IbIlay5zzowXhCiFycTASzKe50AocIGL03_oJggsZsFD1Zfqn8/s320/cupcake+camp+sean+wedding+108.jpg" alt="" id="BLOGGER_PHOTO_ID_5393772657538074018" border="0" /></a><br /><br />The competition:<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeqYsLLah7qHpMFWEi6emt4DmLkW-703ucHcrUQKQLcw0DoFLqnbhCrZVncwS_K6EpegP3e3SveAyM2QRIbbbe1RPWm3BGbbZhoQp13iWINc0M7FN0xgZKswnBtMj_3OXEOZn9oRFOXx4/s1600-h/cupcake+camp+sean+wedding+116.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeqYsLLah7qHpMFWEi6emt4DmLkW-703ucHcrUQKQLcw0DoFLqnbhCrZVncwS_K6EpegP3e3SveAyM2QRIbbbe1RPWm3BGbbZhoQp13iWINc0M7FN0xgZKswnBtMj_3OXEOZn9oRFOXx4/s320/cupcake+camp+sean+wedding+116.jpg" alt="" id="BLOGGER_PHOTO_ID_5393774000855752162" border="0" /></a>Winner: Glamour Cake category-<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikN1BIS4WrB18kKFM5dXxeUsJQIy0CB-mcqrrczqTkbvyi69OcBEQlWCWafjv4RpoTBE1SjMQ2hXM_tgs8kvLTbdbmrNtr3tz7TmXnYx-HJ4BeGCzA0TITn96TJOKrvuU0EAxlwK5DCdo/s1600-h/cupcake+camp+sean+wedding+118.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 283px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikN1BIS4WrB18kKFM5dXxeUsJQIy0CB-mcqrrczqTkbvyi69OcBEQlWCWafjv4RpoTBE1SjMQ2hXM_tgs8kvLTbdbmrNtr3tz7TmXnYx-HJ4BeGCzA0TITn96TJOKrvuU0EAxlwK5DCdo/s320/cupcake+camp+sean+wedding+118.jpg" alt="" id="BLOGGER_PHOTO_ID_5393773374699155426" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBDEhkj2__INZclzQKSJoXsWRD1bK3RAKIOWzWyyIHfoUJnM6emPVqoqjR8G8FZj5tFxfUs_DSmKQGiQCtDJkyrjlFwcA_3mrVxg_33hbnUWZ13OYHdFk0g3w_u9ueGDupjc55J4-4QUk/s1600-h/cupcake+camp+sean+wedding+100.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBDEhkj2__INZclzQKSJoXsWRD1bK3RAKIOWzWyyIHfoUJnM6emPVqoqjR8G8FZj5tFxfUs_DSmKQGiQCtDJkyrjlFwcA_3mrVxg_33hbnUWZ13OYHdFk0g3w_u9ueGDupjc55J4-4QUk/s320/cupcake+camp+sean+wedding+100.jpg" alt="" id="BLOGGER_PHOTO_ID_5393773371669648370" border="0" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikwwGBTvKmxNc31f-px8SrsQReGy4_jElN1DKruI2gqEyRHTZIiow6cDCv0k9jVSXTZpskegFFvoG013muvkaCZKP9fuxe_ifBd4zep35FAaLqpdS4T3u4mDFPHR1Cq2tpr2nQ3366OwE/s1600-h/cupcake+camp+sean+wedding+099.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikwwGBTvKmxNc31f-px8SrsQReGy4_jElN1DKruI2gqEyRHTZIiow6cDCv0k9jVSXTZpskegFFvoG013muvkaCZKP9fuxe_ifBd4zep35FAaLqpdS4T3u4mDFPHR1Cq2tpr2nQ3366OwE/s320/cupcake+camp+sean+wedding+099.jpg" alt="" id="BLOGGER_PHOTO_ID_5393773360198714178" border="0" /></a><br /><br /><br />Winner: Tasty Cake category (the category I was in.... )-<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5vGoz0oyS3UfuV8IYMIJUd4XEedysLeyKz-jPjvp9Dr4BT4yFfhpFl6aUBp7I4qOiRlrSyoro7tQqkF6FvbiD-eZZEhwZ7rQHXssJCfp0qiZkX7EdGoAyAyQ9gEfoNVXQptshvHUk_Eg/s1600-h/cupcake+camp+sean+wedding+097.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5vGoz0oyS3UfuV8IYMIJUd4XEedysLeyKz-jPjvp9Dr4BT4yFfhpFl6aUBp7I4qOiRlrSyoro7tQqkF6FvbiD-eZZEhwZ7rQHXssJCfp0qiZkX7EdGoAyAyQ9gEfoNVXQptshvHUk_Eg/s320/cupcake+camp+sean+wedding+097.jpg" alt="" id="BLOGGER_PHOTO_ID_5393773356196164466" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ABrPn4xABMAgHxEgD-fS_pQolMx_V6I4emh-_CPJ4J4A0Ta3zdz4iejZkvrJ-z8mUgCHkBjv520iWIgrgGI3UtmGHSNEXogc6kPdjP-ipyclAEM40_QwjRnhKGEYIx_U9xK8SertdII/s1600-h/cupcake+camp+sean+wedding+095.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2ABrPn4xABMAgHxEgD-fS_pQolMx_V6I4emh-_CPJ4J4A0Ta3zdz4iejZkvrJ-z8mUgCHkBjv520iWIgrgGI3UtmGHSNEXogc6kPdjP-ipyclAEM40_QwjRnhKGEYIx_U9xK8SertdII/s320/cupcake+camp+sean+wedding+095.jpg" alt="" id="BLOGGER_PHOTO_ID_5393773348355194914" border="0" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-81216315215551342512009-09-05T20:01:00.000-07:002009-09-05T20:33:49.287-07:00How do you handle abuse at the hands of your 7 year old?What started off as a great day leaves me perplexed and unsettled. Katie and I went to the <a href="http://www.thearc.org/NetCommunity/Page.aspx?pid=183">ARC Mother's Support Group</a> this morning. I have never attended one of these but always meant to. It was at a lovely local church with a great kids' room and a comfy meeting room. I chatted with the ladies for over 2 hours and greatly enjoyed the feelings that were shared. I can't say I was surprised by any of them or their stories, but mostly just enjoyed knowing I could share in a room of women who would not judge me or pity me. Just relate.<br /><br />Tonight I lead Katie to her favorite chair (well, second favorite if you count the one at the dinner table...) and she wanted to go to the dinner table instead. Without warning, she took ahold of the inside of my upper arm (you know, the fatty tender part!) and pinched the living daylights out of me. She did not fuss or vocalize at all, simply pinched my arm in the most sensitive spot imaginable. I was distracted while trying to ask my boyfriend to move his soda can from the arm of the chair she was headed to, and didn't see the attack coming at all. I realized of course, once I'd been made painfully aware, that she'd rather be going to the dinner table. I told her that pinching was not ok and not how we get what we want, but I took her to the table anyway. I think I was too shocked and out of sorts to really think of a better plan. So I fed her dinner in relative silence and let her play with her toys on the floor when she was done. <br /><br />I retreated to my own dinner and then to an activity which I find soothing: my embroidery. I usually save my embroidery for after Katie is in bed, or Sundays which is our "no therapy" day. I needed to do something to take my mind of my (still!) sore arm. And to be perfectly honest, I wanted nothing to do with her at that moment. I don't think it would've done either one of us any good for me to pursue more interaction with her at that point. <br /><br />I know Dr. Greenspan, and an infinite number of other specialists would tell me not to take this afront personally. And I know in my mind that it is nothing personal. This is the rational understanding I have of this. She is smart and can be manipulative with her nonverbal communication. At some point she figured out that pinching and hair-pulling gets our attention. So she uses it as she feels she must. It is not like she is screaming "I hate you!" or any of the other hurtful things that children can say, and still not mean.<br /><br />But I can't help but be a bit emotionally affected by both her inflicting pain on me and by my own involuntary reaction. I feel beaten not just by her physically, but by her autism or whatever it is. Her need to pinch me affects me emotionally because it is a symptom of her frustration and inability to communicate. Not only does it hurt, but it leaves me feeling useless and overwhelmed. <br /><br />So I am going to continue to take some time for myself this evening, maybe do a little research on this subject. When I look into her big beautiful blue eyes, I feel soothed, but the pain is still there for me, underlying and unsettling. She needs so much from me and I feel like I am spinning in circles. Waiting for doctor's appointments and therapy referrals, I am just treading water until we can start swimming forward once again. Floortime is a must, but on days when I am emotionally overburdened, I don't even know where to start.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-22538058898672372422009-08-29T20:37:00.000-07:002009-08-29T21:02:22.798-07:00Engaging Autism<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbLgDze4RVZIoHUMUgusjHRBE9EAdIJY_0ZXen79ffgCjD3E0HHTJ47sjePCyYfkmaJ8RhvM_W0hMM_ciy_rs8ilFNby5RkgzzFj18fPd4YyThtrfk7x46iRDxyuhPDKQVLixZE2T9Po/s1600-h/08.29.09+011.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwbLgDze4RVZIoHUMUgusjHRBE9EAdIJY_0ZXen79ffgCjD3E0HHTJ47sjePCyYfkmaJ8RhvM_W0hMM_ciy_rs8ilFNby5RkgzzFj18fPd4YyThtrfk7x46iRDxyuhPDKQVLixZE2T9Po/s320/08.29.09+011.jpg" alt="" id="BLOGGER_PHOTO_ID_5375600708167422994" border="0" /></a><br />"Let's wait and see." How many times has a concerned parent heard this in response to their questions about their child's developmental progress or lack thereof? It is absolutely infuriating to me, and I'm sure I take it too personally. But so much time is wasted sitting on our thumbs, going to weekly speech therapy appointments and hoping we're doing as much for our kiddo as possible. I expressed my concerns to a developmental pediatrician that I felt Katie had autistic characteristics. She was 2, I was told "It could be her developmental delays. Let's wait and see. We can't diagnose her this young." I knew better, but I relented. We continued the weekly speech therapy appointments and of course physical and occupational therapy twice a week. Two years later I asked another developmental pediatrician if she could see my concerns with Katie's ability (or lack thereof) to relate and communicate. She took a moments look at Katie and said "Yeah, I can see how she would be on the spectrum." Meanwhile, her minimal therapies over the last 2 years had done little to address her deficits in relating and communicating. The emotional connection stuff. Really, to me, the IMPORTANT stuff. Who cares if she ever runs a mile!? I'd like to hear what her favorite flavor of ice cream is and why or have her tell me stories.<br /><br />So when I came across the DIR-Model of therapy called <a href="http://www.icdl.com/started/overview/index.shtml">"Floortime"</a>... I was elated and furious. I was reading a book called <a href="http://www.amazon.com/Boy-Who-Loved-Windows-Threatened/dp/0738206660">"The Boy Who Loved Windows" </a>and saw a lot of Katie in his behavior even as an infant. I read about the frazzled mother who tried desperately to gain her son's love and attention. I remembered writing in her baby book when she learned to smile that it was "one per person per day"... And how she would stare at ceiling fans and light bulbs. I realized that we had wasted 2 precious years which could have been better spent doing the Floortime program and addressing her deficits. I was so disheartened. I made folders for each of Katie's specialists so that when they see a child with these progressing problems, they can offer the parents something productive to do instead of simply waiting. Floortime isn't a magic bullet by any means, and if Katie really does have Rett's Syndrome, I don't know how much communication she will ever be capable of. But the cool thing is that every child can benefit from the warmth and pleasurable interaction with their caregiver, regardless of the result. And even if your child wakes up in the morning and jumps ahead 2 developmental milestones, Floortime is still good for a typically developing child as well!<br /><br />In fact, in reading the new book by<a href="http://www.stanleygreenspan.com/"> Dr. Stanley Greenspan</a>, <a href="http://www.amazon.com/Engaging-Autism-Children-Communicate-Floortime/dp/0738210285">"Engaging Autism"</a>, I am amazed and in awe of the way that children's minds typically develop. I will use the Floortime approach again, with any additional children I may hope to have regardless of their developmental status. I have yet to read anything I disagree with, although it is very enlightening to read the ways that children learn and the ways adults may or may not help them with this process. I pointed out to my boyfriend, Shayne, that it's amazing some children progress at all with the kinds of parents I observe.... But I digress. I do try not to judge, and I know that everyone has bad days, is stressed, and just generally fails to meet even their own expectations as being a parent goes. That's my disclaimer. 'Nuf said.<br /><br />At any rate, I wish that this book was required reading for all people in any field specializing with children. How many people I have bumped into that have never heard of Floortime, or who say "Oh yeah, I love that!" when it's clear they have no idea of what it is all about. I wish they would tell every parent of a potentially struggling child before things feel ridiculously hopeless and out of hand.<br /><br />My desire is that professionals stop treating the symptoms and start treating each individual child at their deepest level of deficiency. With the amount of energy it takes to be a good parent, let alone the parent of a child with special needs..... wouldn't you like to know that your energy is spent in the best possible direction? I would... So I'm jumping into this--headfirst.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8946331442834464301.post-91956893694314651092009-08-27T10:50:00.000-07:002009-08-27T11:17:37.701-07:00Network for undiagnosed families<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPYmUeUha_xUIVxVzk6_RRWSazZIT4_k8RR6q4HpcW8ZOfeegJheqtZibnNJcKKumRp8v2UIFVjl9N4DAiLTGOPcN9cuunvMN-JxLrdDJNnngJ2He1SMbfxQXhcKvBFqKjEcTux6ixxU/s1600-h/katie+face.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 262px; height: 195px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPYmUeUha_xUIVxVzk6_RRWSazZIT4_k8RR6q4HpcW8ZOfeegJheqtZibnNJcKKumRp8v2UIFVjl9N4DAiLTGOPcN9cuunvMN-JxLrdDJNnngJ2He1SMbfxQXhcKvBFqKjEcTux6ixxU/s320/katie+face.jpg" alt="" id="BLOGGER_PHOTO_ID_5374709387564763074" border="0" /></a><br />As I snuggled up to Katie this morning and looked into those big blue eyes, I couldn't help but wonder. Of the children I'd come across through talking with other parents, especially networking online, how many had received diagnoses since then? I remember excitedly sharing photos with one adoptive mother whose daughter looked remarkably similar to Katie. Especially her uniquely shaped brilliant blue eyes. I realize that I need a bigger "net" and to have much more follow-through in finding parents with similar kiddos.<br /><br />Which lead me to another, slightly more amusing curiosity: What other quirky kiddos are out there? Katie has the most amazing if not mildly disturbing "double jointed" fingers. She can bend them back perpendicular from her palm under her own muscle control (without pulling or tugging them backward). She does this regularly. I swear, her thumbs don't even seem to have bones in them! I looked up double jointedness and genetic disorders this morning and couldn't find anything terribly useful.<br /><br />The not so new idea or suggestion for testing for Katie is <a href="http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=16&Itemid=1000">Rett's Syndrome</a>. She would be an atypical case because she did not have regression, but was simply behind from the get-go. She also does not have any trouble in the head growth department (that's a family genetic um, blessing!) . The midwife said Katie had the 2nd largest head she'd ever seen delivered vaginally--not that I'm bragging!! She does have the autistic like features, seizures, and some other traits though. It sounds like the 2nd X chromosome can cut in and out with the affected X chromosome so it isn't completely predictable as to where the disorder will appear, though there obviously is some pattern. I laughed when I saw the post on the <a href="http://www.rettsyndrome.org/index.php?option=com_frontpage&Itemid=1">www.rettsyndrome.org</a> site about being an expert in programming DVDs and other movie related devices. Katie sure loves her "toons".<br /><br />So that is the first test I am going to request as I find her a whole new army of specialists here in our new big city. I am excited that we are close to a top-ten children's hospital for neurology. Hopefully they will be equally adept at genetics! We shall see.<br /><br />Another thing I'm working on is setting goals for myself rather than for Katie's progress. I can't measure my success by whether or not she walks or speaks. I can only set goals for things I can control, such as how much I am going to work with her each day, how often we go for walks or a swim in the pool. I want to feel successful and I think measuring my success by Katie's milestones in the past was a huge mistake. I am also remembering to find time for me, a long hot shower, or my embroidery which I'm starting to really enjoy--not so great at it but I do enjoy it!!<br /><br />Having a child with a disability is not the end of the world, but it is a<a href="http://www.thearc.org/NetCommunity/Page.aspx?pid=183"> different world</a>. I have gone through so much as I have worked through my emotions. I wish I had sought out more <a href="http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=75&Itemid=461">support</a> from those in-the-know, but maybe I can help others someday who don't know where to reach or <a href="http://www.thearc.org/NetCommunity/Page.aspx?pid=183">who to ask</a>. I know there are some people who hate the "<a href="http://www.our-kids.org/Archives/Holland.html">Welcome to Holland Poem</a>" but when I read it I take the following interpretation: This is NOT the club I wanted to be in, but I have met some of the most wonderful people whom I would otherwise not had contact with if it were not for Katie's disability. I can still stomp my feet and complain that I don't want to be here, but I know that it has humbled me and tested me. I appreciate so much of the little tiny things about life that I may have otherwise overlooked. Like conversations about poop, Katie's finger's in my mouth, and the ridiculous grin I get on my face when I hear a small child talking.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8946331442834464301.post-49594506670864449252009-07-18T18:09:00.000-07:002009-07-18T18:28:22.357-07:00The story..... Thus far<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG_tLqqf3oLK5aapFwxlI-45T0_ohTJqVRxLaQnrQxaWUYRMjA2WXS5yQ8cDKaHPuYNQlz-nsxW_31lf-iKWaEnsi8gAwWvbufRbox1Jc9NENULhrA4We8RMJMLK1iOKZvi9hiL0pNphA/s1600-h/katie+7th+bday.jpeg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 241px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG_tLqqf3oLK5aapFwxlI-45T0_ohTJqVRxLaQnrQxaWUYRMjA2WXS5yQ8cDKaHPuYNQlz-nsxW_31lf-iKWaEnsi8gAwWvbufRbox1Jc9NENULhrA4We8RMJMLK1iOKZvi9hiL0pNphA/s320/katie+7th+bday.jpeg" alt="" id="BLOGGER_PHOTO_ID_5359975033039070962" border="0" /></a><br /><br />Seven years ago, at the tender age of 19, I found myself unmarried and pregnant. I made a commitment to my unborn child, following my heart and my convictions. Little did I know of the life-altering choice I had made and how far-reaching the effects would be. Eight months later, my beautiful little girl was born with a full head of dark brown hair and content, almond shaped blue eyes. Her daddy and I worked hard to fulfill her newborn needs as well as learning to let go of our idea of what our “young 20s” should be like.<br /><br />She was hospitalized for the first 2 weeks of her life with jaundice and apnea—a boot camp for me, with instruction in both medical terms and diagnoses as well as the true depth of parental love. I was terrified. She came through marvelously, and came home to an ecstatic set of grandparents as well as her exhausted but relieved parents. We lived with my future husband’s parents for five years. Their support has been invaluable, though hard on me for my private, independent nature. Things went well, the typical sleepless nights and bleary eyed days of new parenthood. After 4 months though it became evident to me that my little roly-poly bundle was not developing as the children I had been around all my life. At 6 months, she couldn’t lift her head up off the floor while laying on her tummy in the “tummy time” position. Fearful once again, I took her to the pediatrician.<br /><br />She was diagnosed with low muscle tone, and Katie was sent to physical therapy to strengthen her “floppy” muscles. We were also sent to a genetics specialist, a neurologist, and a developmental pediatrician. Numerous tests and blood draws yielded no unusual results and no answers. Her wonderful pediatrician called her the little Buddha baby. Content to sit and watch the world… not to mention adorably chubby! She was a happy, easy going baby. At 12 months, she was not babbling or talking so we were sent to speech therapy. My biggest concern was her lack of eye contact and interest in the people around her. Katie enjoyed staring at ceiling fans and light bulbs, and played with her toys in any ways but those they were intended for. She took great pleasure in scraping a DVD across the floor like a DJ scratching a record, until many of our favorite movies were useful only as coasters. At the age of 3, Katie finally learned to walk. I could not imagine a better day! She was unsteady and nervous, but walking nonetheless! Still no words, but she was learning to “control” us by taking our hands to the objects she wished to manipulate. We started calling her “Bossy Boots” because of her cute winter boots and ability to clearly dictate her wishes without words or eye contact! It also became clear that Katie had an aversion to chewing or textures in her mouth. She has eaten baby food purees since 6 months old.<br /><br />When Katie was 6 months old, I enrolled in culinary school to pursue my dream of becoming a catering chef. I worked part-time and went to school, also taking Katie to 3 therapy appointments each week. While it was incredibly difficult to attend school, work, and try to be a mom to Katie, I found an outlet in the culinary world where I could perfect my skills in an environment that I could control. On the day of my graduation from school, my worst fears were confirmed. Our genetics counselor told us that at the rate Katie was going, she would never catch up with her peers. It wasn’t a surprise, but just that someone finally had the guts to tell us the truth. Still, without a diagnosis, I was nothing but motivated to find a way to help my daughter. I immediately quit my job at the Coeur d’Alene Resort, where I was working overtime and commuting nearly 2 hours each day. I knew that there was no way I could be a good mom to Katie with that much time away from home. I was offered a job close to home and started researching alternative therapies.<br /><br />I struggled with depression and disappointment, both with motherhood and my own expectations. I was hoping to be the intellectually nurturing mother my mom was to me--raising an independent, curious child with a large vocabulary and mild temperament. I was disappointed in myself, as Katie’s challenges left me exhausted and feeling inadequate. The constant watchful eye of my in-laws was often humiliating and critical, although never to my face. But my young husband was quick to convey their concerns and suggestions which left me feeling frustrated and invaded. I quote myself as saying ever so often, “All I signed up for was an unplanned pregnancy!” I had no idea how life-altering my little girl would be.<br /><br />Katie developed seizures at age 4, and the developmental pediatrician told us “Well, with a child with this many problems, it’s not uncommon to see seizures.” That was crushing. I also had finally gotten someone to address my concerns about Katie’s deficits in relating and communicating, which lead to the autism diagnosis. Although autism doesn’t adequately describe all of Katie’s special needs, it definitely helps to define her difficulties in speech and understanding others. She also had an aversion to loud noises and electric sounds such as the blender or vacuum cleaner running. I did a fundraiser selling homemade biscotti to attend a conference in Washington D.C. about an alternative approach to autism treatment. The most rewarding part of the “Floortime” program is that it doesn’t matter what the child’s diagnosis is (or lack thereof) but specifically addresses each child’s individual needs and deficits.<br /><br />It seemed like every year or so we find another piece to our Katie puzzle. Time passes quietly and milestones are achieved slowly, and then another “shoe” would drop so to speak. Though I have told this story many, many times as you might imagine, I always conclude the list of Katie’s special needs with the reassurance that Katie is incredibly happy and healthy… She really doesn’t seem to know what she’s missing. So her struggles are largely on our shoulders, her parents, her family… Katie is the most joyful, amazing, hilarious little girl with a smile that could brighten the entire world and a laugh that could warm the hardest heart. Her simple joys are more than enough to remind me that life is what you make it.<br /><br />Katie’s only concerns are who’s going to spin the sun umbrella in the yard for her, and how to get her favorite DVD (usually Cinderella but often Cars) to appear on the TV. She loves toys with wheels (well, even things that aren’t toys!), baby dolls, and anything that spins. She also has learned to “gum” Kix cereal and other soft crackers, which she will eat all day if you let her. She gets super excited now watching other kids—a new development for her, as she found children to be too loud, fast, and unpredictable. We took her to see the new Pixar movie “Wall-e” and she spent the entire time facing away from the screen, watching the kids in the audience and laughing hysterically. We had to leave early because she got so squirrelly and excited. In her special needs class at school she is the darling of both the teachers and the other kids. The other children rush to “help” her walk and get her walker, to help her to her seat, and just to be near her. It is heartwarming to watch these amazing kids with their own struggles take such a tender interest in Katie. One boy called her “his” girl.<br /><br />As life would have it, Katie’s daddy and I are divorced after nearly 5 years of marriage. While that’s a whole other story, suffice to say I’ve grown up a lot since I found myself pregnant at 19, and our struggles have left lasting scars on our relationship. As I reevaluate my life and Katie’s and my own needs, I find the desire for stability overwhelming. I work full time as a cook, which fulfills my passion but doesn’t pay as well as I’d like. I am “putting in my time” though and hope to be a chef within the next 4 years. I try very hard to keep a home that is safe and comfortable for Katie, and for now she is living with her father. Our goofy, lovable black lab, Joey, will be joining us as both “security guard” and snuggle buddy. My dream is to find a home where we are comfortable and secure, maybe with room for a little garden.<br /><br />The purpose of this blog is to hopefully connect with other parents of undiagnosed or similarly affected kiddos for networking and support. I love my little girl more than life itself, and I know what it's like to have no formal diagnosis or "roadmap" for the future.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikYEYSmKYOH3hb6jBqrCX71ZBKLS2iIKWEWkvt4xiWdN0KwkNX0SZfYkfSUKWyEeMHQhG-JQWnrJBT60lGe96sbE69iAoRV7aNHWVQCJ8aeTXMxnwEFUqUbGj0hqhjgdCVKq9MjaBZr0E/s1600-h/kayleen+and+katie2.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 447px; height: 335px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikYEYSmKYOH3hb6jBqrCX71ZBKLS2iIKWEWkvt4xiWdN0KwkNX0SZfYkfSUKWyEeMHQhG-JQWnrJBT60lGe96sbE69iAoRV7aNHWVQCJ8aeTXMxnwEFUqUbGj0hqhjgdCVKq9MjaBZr0E/s320/kayleen+and+katie2.jpg" alt="" id="BLOGGER_PHOTO_ID_5359975202847607954" border="0" /></a>Unknownnoreply@blogger.com0