tag:blogger.com,1999:blog-64976089152372449102024-03-13T08:22:45.970-07:00Spina Bifida KidsKari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.comBlogger288125tag:blogger.com,1999:blog-6497608915237244910.post-39707322251052703852014-05-14T21:08:00.000-07:002014-05-16T08:12:18.059-07:00SPINA BIFIDA ASSOCIATION OF KENTUCKY NEW DESIGN SB SHIRTS<div class="separator" style="clear: both; text-align: center;">
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<br />Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com28tag:blogger.com,1999:blog-6497608915237244910.post-47085277846135612382014-05-06T09:27:00.003-07:002014-05-06T09:27:34.225-07:00How to help YOUR family when your child is in the hospitalSo I recently wrote the blog post <a href="http://www.spinabifidakids.blogspot.com/2014/05/how-to-help-family-with-child-in.html" target="_blank">"How to help a family with a child in the hospital"</a> and got pretty good feedback. But in writing that I knew that this one was going to have to come next.<br />
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Obviously this blog is written mostly from the perspective of a planned hospital stay but some of it can go both ways. Some of it will seem like it contradicts the other post, but really....in the world of special needs it kind of has to....its just our life.<br />
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1. Tell your friends what you need. <br />
Its hard I know. Its awkward. But there are people out there that mean it. You have to take people at their word and just let them and tell them. When they ask answer them. Let them know a meal, a babysitter, something to cheer up your child is what you need. People feel loved and a part of things when you allow them to love you and your family. You cant spend your life second guessing motives or intentions...just go with it. tell them<br />
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2. Meals<br />
Don't expect the world to do it all and take over it all. Get on pinterest. Make a plan and get it done. Freezer meals. They are out there. They are easy. IF you plan. Do it. You will thank yourself. Just don't do it right before surgery. You will be exhausted. (learned that the hard way) Oh and. Don't try to keep with your perfect whole food meals, making bread from scratch junk. By some easy mac and cheese, prepackaged snacks and swallow your pride and breathe. It will be okay. It will help you get through and well that's what this is about. <br />
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3. The Other kids<br />
spend time with them beforehand. Take them out on a quick date. Yes you have 500 other things staring you in the face, phone calls to make, things to plan. Don't miss this. They need it. They need the security of your time no matter how much you don't have it to give. <br />
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4. The home<br />
Don't worry about it. Clean it before and then let it go. really, just stop. let the clothes pile. get paper plates, let the dust bunnies snuggle in. They will still be there. it will be okay. no one is going to judge you and well if they did....theyd judge you anyways.<br />
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5. Our tummy<br />
get yourself some snacks, instant coffee, fruit, pack a cooler, call the hospital beforehand and ask about a family fridge or microwave. it will save you those moments of missing the dr because you ran down to the cafeteria. or more than likely just sat there being hungry. don't take a second mortgage out on your house because you had to eat every time in the cafeteria. <br />
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6. Visit<br />
let the kids visit. have the daddy take turns. let the grandparents take turns. its good for everyone. really. <br />
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7. The mommy<br />
Think before you speak. NO really. You have so much on you. Things are going to get to you. That fruit snack wrapper left on the floor will make you feel like your kids are the worst slobs and will end up in juvenile detention at the age of 10. let it go. don't yell at them. Think about it first. Would this be a big deal on a different day in a different situation. Same goes for the daddy. Don't fight over petty stuff that wouldn't really matter. Breathe. Check yourself. Make sure its worth discussing and saying something at this time. Chances are its not. chances are you just need sleep and your child home. Oh and....a girls night out. go out. laugh till you cry. do it. you need it. everything else can wait. <i>(completely laughed till i cried)</i><br />
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8. The daddy<br />
Go out on a date before. Chances are it will be a while until you get to do that again. a long long long while. So do it now. Make it a long one. Make it two. but go. Do one with a movie and no talking, no discussing medical stuff and just chill. And do a coffee night where all you do is talk and get it all out there. oh and during the hospital stay. Be there. Be ready. Laugh with us , cry with us. Distract us, listen to us. I know you have to do it all, but really you do. We know we ask too much, but we don't know how to do it without you. We need you to follow our hurricane of emotions and meet us there. <br />
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9.Learn<br />
Take note. Every hospital stay. Every ER visit. Learn from what you need and what you don't. Simplify. Don't weigh yourself down with too much. EVERY VISIT I forget Tylenol and I always get at least one headache. take note. learn. next time I will not leave without TYLENOL!!! <br />
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I hope this helps. It helped me putting it down.<br />
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<br />Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com13tag:blogger.com,1999:blog-6497608915237244910.post-13321264745587439092014-05-03T14:25:00.002-07:002014-05-03T14:25:26.163-07:00How to help a Family with a child in the hospital<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">My son was recently in the hospital for a crazy 8 days. It was hard. Made even harder by the fact I had 4 other kids who still really needed taking care of.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">But always, always without a doubt my friends and family step up to the plate. And thats how Im blogging. I'm not blogging in a "oh you people dropped the ball and should have.." its a "you people did this and well....it helped. we survived. what you did mattered" type of way.</span></span><br />
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So </div>
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How to help a family with a child in the hospital.</div>
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1. Dont ask what they need. </div>
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We have no idea. We cant put two words together and still make sense, there is no way we can come up with a list of what will be helpful. <span style="font-size: x-small;">(except for now after the fact)</span> We know we need help but we have no idea what will be helpful. And we have no idea what you really mean when you offer help. Did you mean watch kids? Did you just say it to be nice? Did you mean a meal? No idea....terribly awkward. We hate it.</div>
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2. Be Specific</div>
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Tell us what you want to do to help. Be specific and mean it. If you dont want to do something then dont ask or volunteer. We know when you mean it. Just like you know when we mean it when we offer. We truly dont want you over extending yourself and your family and your finances to help us. It makes us feel guilty and rotten and well....we already have 500 other feelings going through us right now....we cant handle more. only help in a way you can.</div>
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To me those are the 2 most important across the board things. The rest well...they work for us and chances are if a friend of yours shared this then it might just work for them too.<br />
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3. Meals<br />
Plan meals for the family left at home and then maybe a couple meals for the first couple days home. You dont know what they are facing. What type of medical stuff they are coming home with. Just because they are home doesn't mean its over....sometimes it means its just beginning. There are awesome sites out there like. www.bringthemameal.com that makes it easy to sign up for meals. But someone has to take the initiative to do this. Heavens knows we dont want to do this for ourselves. And for all you facebook friends or family out of town. You can sign up too. Did you know that lots and lots of places deliver. All it takes is an address and a little research. Jasons Deli, Pizza, Chinese Food. There are lots of options.<br />
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4. The Other Kids<br />
Offer to watch the other kids. And maybe not just offer to baby sit but offer to help the other kids feel special and loved. There is NOTHING in the world like the guilt of leaving kids behind to care for one child. There is NOTHING like the worry that your children wont understand and will feel unloved. When someone loves you and your kids enough to spend time with them, watch them, take them somewhere special to eat there is NOTHING in the world that takes a little bit of that burden off your shoulders. BTW just babysitting is great also, but taking it that extra level makes all the difference when it comes to our hearts.<br />
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5.The Home<br />
Get someone to clean their home. No not you! Dont even think about it. We will rush around and stress and clean before you even come to clean and pretend like its still a total mess. We need a company or someone that cleans homes that we dont know to come in and clean. Our house falls apart when we are caring<br />
for our child and then when we come home we have 500 other things to catch up on and cleaning isnt one of them.<br />
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6. The Car<br />
Its expensive. period. Gas is insane. a gift card for gas wouldnt make us cry at all.<br />
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7. Our Tummy<br />
pack a bunch of snacks for us. healthy snacks. unhealthy snacks when we need to emotionally eat. bottles of water, instant coffee, anything you can think of. sometimes we sit there not able to eat waiting for a doctor to do his rounds. because chances are we will leave to go grab a bite in the cafeteria and that dr will show up...its inevitable. so we stay...and well we get hungry.<br />
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8. A Visit<br />
A visit goes a long way...but please please dont make it a long visit. We need to know we are thought of and we are cared about. Our child needs a distraction and we need to breathe a little. Come visit us. Dont be scared. Bring a small present from the dollar store or have your kids draw some cards, but come. Dont stay away out of fear of being a bother. Come see us. We need it more than we know.<br />
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9. A phone call, text or facebook message<br />
Maybe you cant visit. Maybe your schedule is crazy or you cant handle life right now. (we get it)Or maybe you are out of town. Give us a call. dont forget about us. and dont let us feel forgotten. Dont let fear of interrupting stop you. If we cant answer we wont. If we cant respond, thats okay. Knowing you care and took the time it makes the difference. Feeling forgotten is way worse than feeling interrupted. And we might not ever respond. We might forget but please dont think that in that moment we didnt care. because we did.<br />
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10. The Mom<br />
We have the weight of the world on us and we can be a mess. we might get our feelings hurt. we might snap. We might cry. We might laugh. We are a hot mess. Love us anyway. Sneak in some real food to the hospital. A salad or fruit. They charge $1 for one banana in the cafeteria!!!! I just cant do that!! We will tell you not to. We will tell you we dont need anything. Do it anyways. We will love you for it.<br />
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you thought i was gonna stop at 10 right??<br />
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11. The Dad<br />
The all forgotten individual in this. The one driving back and forth 500xs to and from the hospital. Relieving mom from hospital duty, coming home and being fun dad, trying to keep the house in order so mom doesnt fall apart when she comes home. (never happens I swear) Hes forgotten. Everyone brings the mom stuff, prays for the mom, hugs the mom. Dont forget the daddy. He's trying to do it all. Grab him a book, show up and tell him to go get a soda, bring him a soda, get a comedy dvd for him. Just dont forget the daddy.<br />
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So thank you. Thank you to those who care. who love. who try. for those who do this journey with us. who carry our burdens and who make them lighter. We need you. We couldnt do it without you.<br />
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<br />Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com1tag:blogger.com,1999:blog-6497608915237244910.post-406789269692426842014-04-07T09:43:00.002-07:002014-04-07T14:12:40.893-07:00Spina Bifida Shirts 2014<div class="separator" style="clear: both; text-align: left;">
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<span style="font-size: large;">I dont know about you but these shirts speak volumes to me. They shout things Ive wanted to shout from the roof tops.</span></div>
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<span style="font-size: large;"> This one especially. </span><br />
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Would you like to order one of these? Would you like to use these to help with a fundraiser? Paypal Buttons will be available on the side bar. All these shirts will be pre order. Which means shirts will be made after 4 weeks of ordering is complete. Baby sizes will be available shortly. The ordering will begin APRIL 15. If you are interested in using these for a fundraiser please email me with the month you would like. Only one organization per month. If you would like to do a personal fundraiser to help with medical equipment, therapy or other similar things please email what you are raising for and we will help you with the details. kari.leannthomas@gmail.com<a href="http://3.bp.blogspot.com/-apBhvrR93xU/U0LTldIG0AI/AAAAAAAASpE/MlHOZ0NDFtY/s1600/beautifulshirt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-apBhvrR93xU/U0LTldIG0AI/AAAAAAAASpE/MlHOZ0NDFtY/s1600/beautifulshirt.jpg" height="310" width="320" /></a></div>
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Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com0tag:blogger.com,1999:blog-6497608915237244910.post-31472324631552106822014-03-12T07:36:00.001-07:002014-03-12T07:36:44.001-07:00From A Girl Named Charlie: What I Know<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">Before I ever had kids, I used to walk past the severely and profoundly disabled class on the way to my room every day and think, <i>Man! It really takes a special person to be a special ed teacher for those kids. </i>I admired their dedication and never considered just how much physical work went in to caring for those students day in and day out. I became friends with one of the severe and profound teachers and was enlightened at all the preparation that goes into the curriculum for students with major physical and mental disabilities. It astounded me. I was in awe. I couldn't imagine what the parents of these students dealt with after hearing what the teachers did for them. I remember thinking, <i>There's no way I could ever do that! It really takes a special person to care for such special children. God bless them! Parents of special needs children are extra tough. I can't even imagine how strong they must be to deal with their child's disability on a daily basis. </i></span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><i><br /></i></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">I want to slap my former self across the face. </span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">Ten years later, <a href="http://www.agirlnamedcharlie.blogspot.com/">I am the mother of a child with special needs</a>. I hate it when people tell me they don't know how I do it or they "couldn't do it" or "God only gives special children to special parents" because it's simply not true. After two years of raising and caring for a child with non-typical medical needs, here's what I know about myself:</span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><b>1.</b> <b>I'm weak.</b> I realize this and I'm okay with it. <a href="http://agirlnamedcharlie.blogspot.com/2011/10/when-life-throws-you-curveball.html">When Liv was first diagnosed</a>, I thought it was so important that I appear strong and pulled together. I managed to talk about Spina Bifida and all it entailed with clear eyes and a steady voice, but inside I was a shaky, crumbling, fragile mess. I constantly heard people say that God won't give you more than you can handle, but I questioned whether or not I could handle her diagnosis. I didn't feel equipped, emotionally or intellectually, and sometimes I still don't. The prospect of an impending surgery or new care routine still makes my head spin and my heart race and the fight-or-flight instinct to kick in. Sometimes I want to take my family and run away from Spina Bifida, and if there were aspects of it that weren't potentially life-threatening (like shunt and kidney issues), I think I would. </span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><br />
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<tr><td class="tr-caption" style="font-size: 11px;">Me that first night after diagnosis</td></tr>
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<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"> </span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><b>2.</b> <b>I'm more parts "normal" and "frazzled" and less parts "amazing" or "dedicated" or "(fill in the blank)."</b> I'm normal because I'm a married, working mother with two kids and a moody dog. I'm frazzled because, well, I'm a married, working mother with two kids and a moody dog. Thankfully, right now SB tends to take a back seat to everyday life, and for that, I'm extremely grateful. If you consider being almost eight months pregnant and getting myself and two kids dressed and out the door every morning on time "amazing," I'd be okay with that. Otherwise, I'm just a mom who loves her kids, SB or not, and does whatever it takes to ensure they are happy and healthy and taken care of. That's the type of dedication required of every mother who cares.</span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"> </span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><b>3.</b> <b>I'm pretty happy. </b>This was the scariest prospect for me when Liv was diagnosed, and something I'm so ashamed to admit. October 6, 2011 was (and still is, if we're being honest) the saddest day of my entire life. I have never, ever, ever felt a deeper despair. I didn't know I could feel such crushing grief for someone I'd never even met. When I pictured our lives with SB, <a href="http://agirlnamedcharlie.blogspot.com/2014/02/thou-poor-bragging-fool.html">I didn't see happiness</a>. I saw pity from others, endless medical problems, and struggle, struggle, struggle. A time-machine would have been nice, or maybe a visit from the Ghost of Christmas Future, to show me that not only would we indeed laugh again, but that it would come much sooner than we thought, long before Liv was even born.</span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><br />
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<tr><td><a href="http://3.bp.blogspot.com/-J83gxaMjTyM/Uw06LbWM9XI/AAAAAAAAAmg/a9fH8O7MPAs/s1600/IMG_0022.jpg" imageanchor="1" style="color: #006677; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" height="320" src="http://3.bp.blogspot.com/-J83gxaMjTyM/Uw06LbWM9XI/AAAAAAAAAmg/a9fH8O7MPAs/s1600/IMG_0022.jpg" style="border: none; position: relative;" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 11px;">See? She's happy. I'm happy. We're all so freakin' happy!</td></tr>
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<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><b>4</b>. <b>Most of the time, I only get half of my stuff done. </b>This is kind of in reference to the whole "I don't know how you do it all" sentiment that I hear a lot. It seems like I take Liv to the doctor all the time because she has so many specialists, which would be enough to boggle any busy person's mind. Truthfully, the only doctors she sees are neuro, urology, and an orthopedic specialist. Her pediatrician visits are growing fewer and farther between now that she's two and the developmental pediatrician is once every six months. Most of the time, my house is half clean, my laundry less than half done, and the dishes are partly put away. I justify this by referring to something I read on Facebook that said, "Cleaning house when you have kids is like trying to brush your teeth while eating Oreos." </span><br style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;" /><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><br />
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<tr><td><a href="http://4.bp.blogspot.com/-0PDNjNoVPgo/Uw07AsDntiI/AAAAAAAAAms/WpPdvFhEqfs/s1600/DSC00897.JPG" imageanchor="1" style="color: #006677; margin-left: auto; margin-right: auto; text-decoration: none;"><img border="0" height="240" src="http://4.bp.blogspot.com/-0PDNjNoVPgo/Uw07AsDntiI/AAAAAAAAAms/WpPdvFhEqfs/s1600/DSC00897.JPG" style="border: none; position: relative;" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 11px;">This is crap I did not get done.<span style="font-family: Verdana, sans-serif;"> </span></td></tr>
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<span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: Nobile; font-size: 14px; line-height: 19.404001235961914px;"></span><span class="Apple-style-span" style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><b>6. Day to day life around here is pretty routine and boring. </b></span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">And I'm okay with that. Our days pretty much look exactly the same as the one before, with the occasional adventure sprinkled in. I'd rather be living an uneventful life as far as SB is concerned than a colorful roller coaster ride that takes thrilling twists and turns, always leaving us guessing where we might end up next. We're just doing life, raising our girls the best way we know how, learning along the way. </span>Kristenhttp://www.blogger.com/profile/08505960733279822276noreply@blogger.com5tag:blogger.com,1999:blog-6497608915237244910.post-64064951195782755592014-02-12T08:23:00.001-08:002014-02-12T08:23:31.354-08:00From A Girl Named Charlie: Upon Diagnosis<span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">If you've somehow stumbled upon this blog after doing a Google search, <i>welcome!</i> </span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: 'Walter Turncoat'; font-size: 14px; line-height: 19.404001235961914px;"></span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">You may have just been told that your child has a neural tube defect called Spina Bifida. Or maybe you're the family member or friend of someone who has just received this devastating news. Either way, I'm so glad you're here, even if it had to be under these circumstances.</span><br />
<span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: 'Walter Turncoat'; font-size: 14px; line-height: 19.404001235961914px;"></span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">When my doctor said, "There were some abnormalities on the ultrasound that are consistent with Spina Bifida," I felt like I was going to die. I wanted to. I quite literally felt like the whole world had stopped and thrown me into a raging whirlwind of fear, grief, and uncertainty. For two days, I wept, prayed, mourned and wept some more. I grieved the loss of the baby I thought I was carrying and instead felt pregnant with a diagnosis rather than a tiny, little person. </span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">I craved the days of my pregnancy before the diagnosis with an unimaginable desperation. </span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">For the first time in my life, I cried out in my sleep, waking myself up multiple times that first night sobbing. I went to bed with a headache and woke up with a migraine. </span><br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-S2w1cAAl6F4/UvpmgsmUkQI/AAAAAAAAAAM/ht25Rhh-Sck/s1600/LivieLane.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-S2w1cAAl6F4/UvpmgsmUkQI/AAAAAAAAAAM/ht25Rhh-Sck/s1600/LivieLane.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liv<br />
20 Weeks<br />
October 6, 2011</td></tr>
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<span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;"><br /></span><span style="background-color: white; color: #333333; font-family: 'Walter Turncoat'; font-size: 14px; line-height: 19.404001235961914px;"></span><span style="background-color: white; color: #333333; font-family: Verdana, sans-serif; font-size: 14px; line-height: 19.404001235961914px;">And then my husband, to whom I will forever and ever credit with pulling me up out of my funk, said this to me:</span><br />
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<b><i><span style="font-family: Verdana, sans-serif;">"Cheer up, <a href="http://agirlnamedcharlie.blogspot.com/">Charlie</a>. This isn't the end of the world." </span></i></b></div>
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<span style="font-family: Verdana, sans-serif;">That was all I needed to hear. I slowly began putting on my game face and quickly determined that knowledge is <i>indeed </i>powerful. With that being said, here is what we did in the immediate days, weeks, and months following Liv's diagnosis that were integral in shaping our positive attitudes and inspiring confidence in our ability to be parents to this precious little person:</span></div>
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<span style="font-family: Verdana, sans-serif;">1. Immediately upon diagnosis, we went to Maternal Fetal Medicine where the presence of SB was confirmed by a perinatologist. This is just a fancy name for Specialist OBGYN. Don't be intimidated. </span></div>
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<span style="font-family: Verdana, sans-serif;">2. After getting a confirmation diagnosis, we then asked to be referred to a Pediatric <b>NEUROSURGEON</b>. This is important because many times people are mistakenly referred to a Pediatric Neurologist, which is totally different. They know nothing about outcomes with SB. Trust me.</span></div>
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<span style="font-family: Verdana, sans-serif;">3. Once we spoke to the Pediatric Neurosurgeon, I began researching and reading, absorbing everything I possibly could about Spina Bifida. I bought two books on Amazon: <a href="http://www.amazon.com/Children-Spina-Bifida-Parents-Guide/dp/1890627771" style="color: #006677; text-decoration: none;">Children with Spina Bifida: A Parent's Guide</a> and another memoir written in the early 90's by a father of a son wtih SB. It wasn't nearly as helpful, so I'm not going to bother sharing the title. Here are some other invaluable resources to check out:</span></div>
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<li style="border: none; margin: 0px 0px 0.25em; padding: 0px;"><span style="font-family: Verdana, sans-serif;"><a href="http://community.babycenter.com/groups/a3825/spina_bifida_kids" style="color: #006677; text-decoration: none;">Spina Bifida Kids</a> (A group hosted on Babycenter.com)</span></li>
<li style="border: none; margin: 0px 0px 0.25em; padding: 0px;"><span style="font-family: Verdana, sans-serif;"><a href="http://www.sbaa.org/" style="color: #006677; text-decoration: none;">The Spina Bifida Association of America</a> (You can find the website for your local SB chapter on this site as well)</span></li>
<li style="border: none; margin: 0px 0px 0.25em; padding: 0px;"><span style="font-family: Verdana, sans-serif;"><a href="http://www.spinabifidaconnection.com/" style="color: #006677; text-decoration: none;">Spina Bifida Connection</a> (This group is geared more towards adults with SB but also contains some valuable threads regarding kids and SB)</span></li>
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<span style="font-family: Verdana, sans-serif;">Spina Bifida Kids on Babycenter's website was by far the most useful resource for me. Many of the parents who post have blogs and usually you can find them in the signature lines of each person when they post a message or comment. This is where I ultimately found hope and confidence that life with SB wasn't going to be the awful, sad experience I initially thought. </span></div>
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<span style="font-family: Verdana, sans-serif;">4. Ask questions. Write them down. You'll forget them if you don't. You'll wake up in the middle of the night and kick yourself because there was something you wanted to know that you forgot to inquire about. </span></div>
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<span style="font-family: Verdana, sans-serif;">5. Put together a binder. Inside it, you'll want to keep any information, handouts, confirmations, reports, <i>anything the doctors give you</i>. Eventually, you'll see a multitude of specialists and you'll want to keep all that stuff straight. Plus, you can put your questions in here and carry it all with you to your appointments. <i>Did I mention you need to write down your questions as you think of them?</i></span></div>
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<span style="font-family: Verdana, sans-serif;">6. Don't be afraid to kindly ask your doctors, especially the neurosurgeon, to explain things to you in a different way. Sometimes they forget that not everyone is familiar with terms like "corpus callosum" and "myelomeningocele." I've found that they are always happy to re-explain things to me if needed. <i>(Which it probably won't be since you'll be a researchin', technical-jargon usin' fool in no time.)</i></span></div>
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<span style="font-family: Verdana, sans-serif;">There were other things we could have done that, in hindsight, would have given us even more reassurance about the future of our sweet little Liv. We didn't contact any other parents of little ones with SB. At the time, it was just too overwhelming. I wasn't ready to face an actual person with this defect when I didn't quite feel capable of dealing with it myself. Nineteen months into this journey, I wish I would have. I really think it would have helped. Reaching out to other members in our immediate community through our local Spina Bifida chapter would have also given usa good support network on which to lean during my pregnancy. </span><span style="font-family: Verdana, sans-serif;"> </span></div>
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<span style="font-family: Verdana, sans-serif;">I hope you've somehow been given some measure of comfort by reading this, no matter who you are or where you're at on your SB journey. If this is all just starting for you, please remember:</span></div>
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<span style="font-family: Verdana, sans-serif;"><b> Everything is going to be okay. I promise. It will.</b></span></div>
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<span style="font-family: Verdana, sans-serif;">Love,</span></div>
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<span style="color: #45818e; font-family: Verdana, sans-serif; font-size: medium;"><a href="http://agirlnamedcharlie.blogspot.com/">Charlie</a></span></div>
Kristenhttp://www.blogger.com/profile/08505960733279822276noreply@blogger.com0tag:blogger.com,1999:blog-6497608915237244910.post-50487914374112396072014-02-11T07:00:00.000-08:002014-02-11T07:00:05.670-08:00Pets With Spina BifidaMy daughter was diagnosed with spina bifida when I was 30 weeks pregnant and had an extra ultrasound to check her growth. There hadn't been anything unusual noted on her 20 week anatomy scan, so I felt blindsided. I didn't have any sense of what spina bifida was or what it would involve. Now five years later, I have become a pro at explaining spina bifida to family, friends, and teams of therapists and teachers at IEP meetings.<br /><br />A couple years ago, I came across the Facebook page of a little cat who has spina bifida. I was surprised that cats could have spina bifida, because I never really considered it. None of my research into how spina bifida would impact my daughter even mentioned that it wasn't a condition that is unique to humans. Further googling revealed that dogs can also be born with spina bifida, and some of them had their own Facebook pages too. My daughter was delighted to see animals wearing diapers and scooting around in carts, because they had spina bifida just like her!<br /><br />Now we have a new member of our family! <div>
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<a href="http://1.bp.blogspot.com/-crwOESB4_9A/UvmqtButJAI/AAAAAAAAAD4/6PSRRqSk8YU/s1600/1653766_549152647694_773837331_n.jpg" imageanchor="1"><img border="0" src="http://1.bp.blogspot.com/-crwOESB4_9A/UvmqtButJAI/AAAAAAAAAD4/6PSRRqSk8YU/s1600/1653766_549152647694_773837331_n.jpg" height="240" width="320" /></a></div>
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<br /><br />This little sweetheart is Soot. My daughter named her Soot Gremlin after the little soot gremlins from <a href="http://www.imdb.com/title/tt0096283/">Totoro</a>, because like her namesakes, Soot is tiny, black, sneaky, and can blend in wherever she hides. My daughter finds these qualities admirable. In Totoro, the soot gremlins live in the shadows in an abandoned house and move away when they decide the new family that moves in is nice. Soot has decided that we are nice, but rather than moving away, she is spending far less time hiding.</div>
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<a href="http://1.bp.blogspot.com/-Ln1zzAXIcbQ/UvmrsJF0cKI/AAAAAAAAAEA/5iKBMUSIYZA/s1600/1609979_661784827222725_528796475_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-Ln1zzAXIcbQ/UvmrsJF0cKI/AAAAAAAAAEA/5iKBMUSIYZA/s1600/1609979_661784827222725_528796475_n.jpg" height="320" width="240" /></a></div>
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<br /><br />Soot is a manx, and she has spina bifida too! The mutation that leads to the shortened or absent tails in manx cats can also cause spina bifida or other spinal abnormalities. In dogs, spina bifida is most common in bulldogs. Dogs and cats of any breed can be born with spina bifida, but it is very rare. Just like humans, the severity varies with each case depending on the amount of nerve involvement. <br /><br />Soot has spina bifida occulta, which is the least severe form of spina bifida. She can use the litter box and walk independently, but her back legs are weak so sometimes she hops and wobbles, especially when she is tired. Even pets with more extensive special needs can live wonderful lives too!<br /><br />We are so happy to have Soot as part of our family. My daughter loves having a pet who shares having spina bifida. </div>
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<br />I set up a page <a href="https://www.facebook.com/SootSpinaBifida">Soot the Kitty With Spina Bifida</a> to help raise awareness of spina bifida in humans and in pets. Neither Soot nor my daughter let spina bifida stop them!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-b4r0TaOsEjo/UvmtTGlZJNI/AAAAAAAAAEM/MurP5MX7T0Q/s1600/1888635_665535480180993_563491856_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-b4r0TaOsEjo/UvmtTGlZJNI/AAAAAAAAAEM/MurP5MX7T0Q/s1600/1888635_665535480180993_563491856_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Though sometimes everyone needs a good nap!</td></tr>
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(A shorter version of this post was originally posted on my <a href="http://katiemccomis.weebly.com/blog.html">personal blog</a>.)</div>
Katie Mhttp://www.blogger.com/profile/06815760771461064607noreply@blogger.com1tag:blogger.com,1999:blog-6497608915237244910.post-80126838550864101142014-02-07T11:24:00.005-08:002014-02-09T09:11:19.056-08:00My Open Letter To Expectant Parents:<a href="http://1.bp.blogspot.com/-1CxYj4iYJxo/UvUxVXYZ2UI/AAAAAAAABt0/4cpZAI076T0/s1600/jake_lucy_2_small-32.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-1CxYj4iYJxo/UvUxVXYZ2UI/AAAAAAAABt0/4cpZAI076T0/s1600/jake_lucy_2_small-32.jpg" height="207" width="320" /></a>Greetings !<br />
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I spent so many days trying to think of a way to introduce myself to this blog. I wanted to be entertaining yet, informative and reassuring yet, not sugar coating anything. But then I realized no one out there in internet land really knows me or my story. So it doesn't really matter how I start off! Because if you are reading this blog you don't really care about me, you are here because at one point in your life, you heard those two little words that forever changed everything: Spina Bifida.<br />
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Allow me to start with an excerpt from my own blog that I would use to keep my long distance family up to date with my Baby #1 while I was pregnant with twins - aptly dubbed Thing 1 and Thing 2:<br />
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Dear Thing 1 and Thing 2,<br />
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I hope you know how much we love you out here and can't wait to hold you in our arms. YOur big brother gives you a kisses everyday - and even smeared his oatmeal all over Mommy's shirt yesterday giving you some of his breakfast! He is such a good sharer! As for September 12, well that is just another day on our growing list of days that we will never forget. THat is the day we found out that Our little THing 1 is already a fighter - even on the inside. At a routine ultrasound we heard the words you never want to hear as an expecting new parent - "something doesn't look right". Our minds raced with fear and the tears began to flow. "What does that mean?" "What could possibly not be right with our perfect little angels?"As the doctors and nurses did their best to act like this was an everyday occurrence, I held your daddy's hand and knew - something was drastically wrong. The next day we went for further tests and vacantly listened as the doctors explained the words "Spina Bifida" to us over and over again. As I listened to their calm and comforting explanation of what was taking place under my own skin I couldn't help but just sit their and silently freak out - QUIT TALKING AND SOMEONE HELP MY BABY!!! How could you be so close - and still we could do nothing to help?? Nothing but wait. It didnt seem fair.<br />
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<a href="http://4.bp.blogspot.com/-EY-xP4JZQpk/UvUwl5YRokI/AAAAAAAABso/gXsG-MTRGmY/s1600/IMG_1244.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://4.bp.blogspot.com/-EY-xP4JZQpk/UvUwl5YRokI/AAAAAAAABso/gXsG-MTRGmY/s1600/IMG_1244.JPG" height="200" width="200" /></a></div>
<a href="http://2.bp.blogspot.com/-zbgKDu3w6nI/UvUxUINZnRI/AAAAAAAABtY/Tzu8ZDkwmGI/s1600/IMG_1301.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-zbgKDu3w6nI/UvUxUINZnRI/AAAAAAAABtY/Tzu8ZDkwmGI/s1600/IMG_1301.JPG" height="200" width="200" /></a>My mind raced with fears and worst case scenarios. How could this happen? What did I do wrong? Were you in pain? What was your future going to be like? Then suddenly amongst all my panic of doom and gloom I realized something I must never lose sight of again - You are my babies. Both of you. You are my little miracles - and it is not my job, but my absolute honor to love you both no matter what. I suddenly felt so ungrateful and selfish for all my negative thinking. Who was I to limit you before I even laid on eyes on you? Who was I to question what God has in store for us? From that moment on I promised you that I would stay positive while we sit and wait. I promised you I would not let this diagnosis define you nor will I let it overshadow your arrival Thing 2. I realized Spina Bifida was not the end of the world and we would happily adjust to whatever 'new normal' our life would be like once you two arrived.<br />
<a href="http://3.bp.blogspot.com/-N24zDGYItkA/UvUwmwWOgHI/AAAAAAAABs0/Hp8dAFwH6Yk/s1600/IMG_3477.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-N24zDGYItkA/UvUwmwWOgHI/AAAAAAAABs0/Hp8dAFwH6Yk/s1600/IMG_3477.JPG" height="320" width="320" /></a>Well My Thing 1 and THing 2, no one ever said parenthood was going to be easy. A week ago, I thought the hardest thing I would have to deal with was having not 1 but 2 (ok, 3) colicky babies. It's funny how things can change in the blink of an eye. Just know that you two have a whole team out here pulling for you guys and praying for your safe arrival. You have a whole, big, loud, obnoxious family ready to love you and spoil you and secretly fill you up on candy when mommy is not looking. You two, along with your big brudder Isaac, are our precious, little perfect snowflakes and your Mommy and Daddy love you very much - today - tomorrow - and everyday after that.<br />
So rest up in there Little ones and enjoy your final months of peace and quiet. I can promise you wont get much of that out here. :) Thing 2, keep an eye on your Buddy in there for us. Thing 1, get ready to be grounded for all the worry you put your Mommy and Daddy thru the past few days.<br />
As for you Isaac, You just continue being the amazing little creature you are.<br />
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<a href="http://3.bp.blogspot.com/-VvsZDgM8Hw0/UvUwmNqOWmI/AAAAAAAABss/iPBdM8HYhJ4/s1600/IMG_3152.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-VvsZDgM8Hw0/UvUwmNqOWmI/AAAAAAAABss/iPBdM8HYhJ4/s1600/IMG_3152.JPG" height="200" width="200" /></a>Odds are if you are reading this, you may be pregnant with a little one diagnosed with SB and you slightly freaking out right now. This entry is for you! Also like myself, you probably googled Spina bifida - against everyone's advice to stay off of the computer - and happened upon this blog. Perhaps someone referred you here to see all the beautiful babies and smiling faces of Spina Bifida. And maybe, just perhaps, you are still on the fence of whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with SB has had parents who stand exactly where you are today. We all freaked out, we all cried, we all doubted our capabilities - yet for every person living with SPina Bifida today - we all got over OUR fears and became a stronger parent for it. You can do this too!<br />
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The greatest advice I ever received when I was pregnant with my twins (now renamed Jake and Lucy)- and Lord knows I got A LOT of advice! - was that one day I would wake up and SB wouldn't be such a big deal. Back then, I remember thinking the CHOP nurse who told me that was crazy! And then one day it happened: I ran out of diapers. Keep in mind I now had 3 babies under 3 years old and we go through A LOT of diapers!! I thought "Oh Crap! We are out of diapers, I have to run to the store!" I never thought Oh Crap! Thing 1 has SB and now we are out of diapers! or Oh Crap! Thing 1 has SB, how can I go to the store? It was just the simple realization that life was going on anyway - regardless of Jake's SB or not. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly I realized I was still a mom - and those babies needed me to be the best mother I could be.<br />
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<a href="http://4.bp.blogspot.com/-0E41nCxi0bI/UvUwl2TusTI/AAAAAAAABsw/VZRE2gvztZQ/s1600/IMG_2133.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-0E41nCxi0bI/UvUwl2TusTI/AAAAAAAABsw/VZRE2gvztZQ/s1600/IMG_2133.JPG" height="320" width="320" /></a>I always said if I could have met my Jakers when I was pregnant with him I would have never cried a single second over his diagnosis. So he has some issues - his crazy-temper tantrum-screaming all- the- time-hides-food-in-her-toy-box twin sister is on track to have plenty too :) To know him is to love him. His smile, His crystal blue eyes, His belly laugh, his ridiculous Sean Cassidy-esque hair - he is completely perfect in every way. Sure his feet are a bit funky and he constantly has a stinky diaper, but I wouldn't change a thing about this lovable creature…well, other than his ability to fight off a sleep like it is his job!<br />
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So Mama or Daddy if you are reading this and wondering how in the world life is going to go on - or how can this happen to you - I am here to tell you YOU CAN DO THIS. <br />
So get up, strap on your big girl (or big boy) pants and get ready! Because this baby - YOUR BABY - isn't going to take any mercy on you! He or she will be here in no time and your heart will be stolen the second you meet! And very, very shortly after you will be wondering what the heck you were so worried about…Just don't forget to buy plenty of diapers! <3nikhttp://www.blogger.com/profile/18438473567607826877noreply@blogger.com7tag:blogger.com,1999:blog-6497608915237244910.post-50889140237014874442014-01-29T14:10:00.001-08:002014-01-29T14:10:26.924-08:00Up and RunningThis blog has been dormant for the most part for the last little while.<br />
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<span style="font-size: x-large;">But not for much longer!!!!! </span><br />
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Get ready blog readers.<span style="font-size: large;"> We are getting up and running again!</span>! We added some new writers and still have some old writers.<br />
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<span style="font-size: large;">We are looking forward to using this as a great resource again!</span><br />
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<span style="font-size: large;">We apologize for the long lag in updating. Life gets in the way sometimes.</span>Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com5tag:blogger.com,1999:blog-6497608915237244910.post-71070693945374987032012-06-13T13:30:00.000-07:002012-06-13T13:30:43.820-07:00United by Spina Bifida<div style="text-align: center;">
If you don't already know about United by Spina Bifida, look us up on Facebook!
We have a discussion group & resource page!</div>
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<i>Group</i>: <b><a href="http://www.facebook.com/groups/unitedbysb/" target="_blank">United by Spina Bifida</a></b></div>
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<i>Resource Page: </i></div>
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<center><div id="fb-root">
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<script src="http://connect.facebook.net/en_US/all.js#xfbml=1">
</script><fb:like-box border_color="" header="false" href="http://www.facebook.com/UnitedbySB" show_faces="true" stream="false" width="200"></fb:like-box></center>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6497608915237244910.post-90747054276154753492012-02-10T13:06:00.001-08:002012-02-10T13:06:39.715-08:00Online Q & A with Dr. Mark Levitt<div style="text-align: center;">
<b>Live Online Q&A </b></div>
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<b>with Dr. Mark Levitt<br />Hosted by: Cincinnati Children's Hospital</b></div>
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<b>Wednesday February 22, 2012 </b></div>
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<b>7 p.m. EST</b></div>
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Hello Friends,<br />
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We know how challenging and frustrating dealing with fecal incontinence related to spina bifida can be. On Wednesday February 22, 2012 at 7 p.m. EST, Cincinnati Children’s Hospital will be hosting a LIVE ONLINE Q&A with Dr. Marc Levitt.<br />
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Your questions regarding fecal incontinence will be answered in a small, private session along with other families who are coping with the same medical condition.<br />
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Remember, you don’t have to suffer in silence. We can change the outcome together.<br />
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This is Dr. Levitt’s second online Q&A, and If you didn’t get a prior reply, this live online Q&A is a great opportunity to ask Dr. Levitt any remaining questions you may have about fecal incontinence.<br />
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The Moderator for this PartnersHub Live event will be Teri Martini, RN BSN. Teri is the Program Manager of the Colorectal Center for Children, with more than 10 years experience as an RN in gastroenterology and colorectal care.<br />
<br />
<b>Here’s how you can participate: </b><br />
Click <a href="http://www.eventbrite.com/event/2912706985">eventbrite.com/event/2912706985</a> to visit the CCH Eventbrite page and RSVP for the live event. Or join us on the day of the event on the Colorectal Center for Children’s Facebook page: <a href="http://www.facebook.com/CCHMCColorectalCenter?sk=app_296885033663887">facebook.com/CCHMCColorectalCenter?sk=app_296885033663887</a><br />
<br />
For more information about the Q&A with Dr. Levitt, you can reach Dillon at (310) 569-6858 or email: <a href="mailto:dwilson@partnershub.com">dwilson@partnershub.com.</a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6497608915237244910.post-31618772861593613352012-01-09T21:36:00.000-08:002012-01-09T21:36:35.248-08:00Courage in sports: Wheels<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/758glVBglfM?feature=player_embedded' frameborder='0'></iframe></div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6497608915237244910.post-42061349832597361572011-12-31T09:01:00.000-08:002011-12-31T12:32:31.508-08:00A New PerspectiveI can't believe I am posting this, but I am trusting the pull on my heart that I should.<br />
<br />
This journey has truly given me a new perspective on THIS life, and I have been blessed beyond measure every day since we found out about Brooklyn's diagnosis. Her strength, her determination, and her spirit are truly <i>gifts</i> that I needed in my life.<br />
<br />
However, on hard days, when my heart is heavy and starts to want answers I will never get, I have learned to choose a <i>heavenly</i> perspective. To picture what eternity will be like. Although I am careful not to dwell on it -- there is much happiness to be had <i>right now </i> -- sometimes it helps to remember that any sadness that comes along with this journey is temporary. I don't know how many of you have Faith, but I can tell you that I don't know how I would get through this journey without it.<br />
<br />
I wrote this a few weeks ago. It is with a humble heart that I press "publish." I truly hope it provides encouragement or, at the very least, a new perspective.<br />
<br />
Happy New Year, my friends!<br />
<br />
~Lisa @ <a href="http://ourlittlemiracle.blogspot.com/">Heaven Sent</a><br />
<br />
<b><i>In His Presence</i></b><i><br />
<br />
The first thing she felt was the grass tickling her feet. It was cool, yet inviting; each blade soft to the touch, but firm enough to find its way between each of her toes. The sensation, she realized, was new. She didn't want to open her eyes -- not yet. Something made her want to savor the feeling for just a little while longer.<br />
<br />
She stretched out her left leg and felt the tickle crawl from her feet to her ankle, up her leg, until it stopped at her knees where her dress began. She then stretched her right leg, taking the time to lengthen it ever so slowly. <br />
<br />
Savor.<br />
<br />
The weight of her legs was now making imprints in the soft grass, grounding her, yet the feeling pulsing through her body made her want to fly.<br />
<br />
She opened her eyes. The light before her was blinding -- blue and white with flecks of golds and silver. Even in its brilliance, it was mesmerizing, drawing her in and making her see more clearly.<br />
<br />
And that's when she saw Him. He had been watching her the whole time. He too had been waiting for this moment. The smile on His face mimicked the feeling spreading throughout her whole body.<br />
<br />
Pure joy.<br />
<br />
Their eyes met, and He nodded. It was time.<br />
<br />
She looked down at her new body and slowly bent her knees, using her hands to push her legs up, until finally she was standing. The movement was graceful, easy. As if this was how it was always meant to be.<br />
<br />
She looked back at Him, eyes wide, and He held out his arms. Her first step was careful and slow, but as she felt the weight of her body on the lush ground beneath her, she began to walk faster and faster, until finally she was running. Running as fast as she could until she fell into His arms and thanked Him. Over and over and over.<br />
<br />
Thank you.<br />
<br />
As they pulled away, His hand touched her cheek and He searched her eyes for any questions. She had none.<br />
<br />
He smiled again.<br />
<br />
His arms invited her to leave if she wanted to. As she looked around, she saw that some were dancing, leaping, while others sang in unison. Their praise permeated the air, creating new breath. She inhaled.<br />
<br />
She saw others walking through the fields, laughing and talking; children skipping and running; the flowers swaying to the rhythm of their joy. Her soul warmed.<br />
<br />
Then she saw those gathered at His feet -- peaceful and still -- and she knew where she wanted to be, just for a little while longer.<br />
<br />
She slowly bent her knees, lowering her body back onto the grass, and simply sat in His presence. As if this was how it was always meant to be.<br />
</i><br />
<br />
<span style="font-size: xx-small;">(Copyright, Lisa Bonnema, 2011)</span><br />
<br />
************<br />
<b><i><br />
And I heard a loud voice from the throne saying, "Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 'He will wipe every tear from their eyes. There will be no more death' or mourning or crying or pain, for the old order of things has passed away.”<br />
<br />
He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."<br />
<br />
He said to me: "It is done. I am the Alpha and the Omega, the Beginning and the End. To the thirsty I will give water without cost from the spring of the water of life. Those who are victorious will inherit all this, and I will be their God and they will be my children." <br />
<br />
Revelation 21:3-7 NIV </i></b><br />
<br />
************Lisa @ Heaven Senthttp://www.blogger.com/profile/15795670644423933851noreply@blogger.com12tag:blogger.com,1999:blog-6497608915237244910.post-84000787731994660262011-12-09T06:19:00.001-08:002011-12-09T06:24:26.132-08:00StudyI received the following comment on my personal blog and I thought I would pass the information along...<br />
<br />
<br />
<i>Hi Mrs. Henn, </i><br />
<br />
<i>I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate. </i><br />
<br />
<i>Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics. </i><br />
<br />
<i>
I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at CBeyer@vpgenetics.com and visit www.sbgenetics.org. This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact. </i><br />
<br />
<i>Warmest regards and happy holidays, </i><br />
<br />
<i>Courtney </i>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6497608915237244910.post-13601507624579527732011-11-24T11:10:00.000-08:002011-11-24T11:11:02.820-08:00Q & A with Dr. Levitt<div style="text-align: center;">
Q & A with Dr. Mark Levitt</div>
<div style="text-align: center;">
November 30, 2011</div>
<div style="text-align: center;">
7 p.m.</div>
<br />
Dr.
Marc Levitt, Director of The Cincinnati Colorectal Center for Children,
will be holding an online Q & A relating to fecal incontinence due
to Spina Bifida, and he will be explaining the Bowel Management Program
he has designed to battle this difficult problem.<br />
<br />
RSVP: <a href="http://www.eventbrite.com/event/2504065728">eventbrite.com/event/2504065728</a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6497608915237244910.post-46246866937388066722011-10-31T22:18:00.001-07:002011-10-31T22:19:15.686-07:00My favorite part of a "holiday" that I don't like<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-0ac6gJTj4u4/Tq90a6JgL4I/AAAAAAAAHFY/weG4MA-61fg/s1600/DSC_8616.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://3.bp.blogspot.com/-0ac6gJTj4u4/Tq90a6JgL4I/AAAAAAAAHFY/weG4MA-61fg/s320/DSC_8616.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Karate Kid, Rocky, a butterfly, a snow princess, <br />
and a moody teenager doing his homework on the stoop.</td></tr>
</tbody></table>
<br />
Something melodramatic by Trans-Siberian Orchestra filtered through the speakers as Esther-Faith crawled to the playroom. She hadn't finished her white hot chocolate. She didn't even eat any of the candy she collected from the neighbors. Tim watched as she gingerly crawled to the middle of the floor, put her feet underneath of her body, and slowly stood up. It took many tries. But without the assistance of any of her equipment, she stood up.<br />
<br />
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<br />
And then, she just stood there, watching her reflection in the sliding glass door. Her cousins and brothers ran around her playing, laughing, and enjoying the chaos of the night. But she just stood. Occasionally she lost her balance. She would teeter forward or back. Sometimes falling all the way to the ground with a thud. But she always got herself back up to standing.<br />
<br />
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<br />
<br />
And then, ever so slowly, she moved her arms to first position. Holding them still in front of her body, she waited for her balance to catch up. Then, gracefully, she stretched her arms out to second position. Tim stood next to me in the dining area. Two of the three boys had heaped more sweet and sour noodles into their bowls. Auri was taking more sips of her hot chocolate.<br />
<br />
Watching her own movement in the reflection of the glass, she slowly and gracefully set her arms into third position. Then fourth. And finally, fifth. Just before losing her balance and crashing to the floor again.<br />
<br />
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<br />
Unaware that we were watching, in an awkward gentle motion, she put her feet back under her body. Willing her orthotics to do what she wanted them to do. She slowly and comically got to standing again.<br />
<br />
Already brimming with emotion of tough choices and hard decisions, I grabbed my sister's arm and started to cry. Tim grabbed the camera and moved into the play room determined to capture her remarkable tenacity on film. <br />
<br />
She moved slowly but fluidly through the arm positions of the five basic ballet positions again and again. Tim knelt in front of her encouraging her when she fell or helping her focus when her balance threatened to interrupt her practice.<br />
<br />
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<br />
Esther-Faith will start real ballet in January. Actually, all three will start ballet in January. I've been searching for a few months for an dance studio that will teach my daughter ballet without putting her into a "pity" class or just appeasing my request in the name of compliance. I want her to learn how to dance. For real. Because SHE wants to learn how to dance. For real.<br />
<br />
So, I contacted a few dance studios. Dozens maybe. I heard "no" a lot. I heard "we've got a wheelchair class" a lot. I heard "have you tried such-and-such" a lot. And I got tired of explaining that I wanted her in a class with other children learning ballet. That I wanted her to work. That SHE wanted to work. That she loves to dance, and I want to give her the opportunity to learn to dance.<br />
<br />
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<br />
<br />
Eventually, I found a well-established studio with an adaptive specialist who would be available to help Esther-Faith learn to the best of her ability. They never offered a different class. They didn't tell me "no." And most importantly, they understood that Esther-Faith wants to be a ballerina, but that it might just look a little different.<br />
<br />
They are excited to have her. She is excited to go.<br />
<br />
When we talked about Esther-Faith taking "real" ballet classes, Isaac decided that he would also like to take ballet in addition to more tap. And then Isaiah, the teenager, said he wanted to take ballet, too. So in January, all three of my children will begin ballet. At three different stages in their lives, and for three different reasons.<br />
<br />
But really, Esther-Faith's education has already commenced. She has started memorizing the vocabulary. Pas de bourrée. Pirouette. Pas de chat. She often convinces her dad to lift her into the air. She gets books about ballet from the library.<br />
<br />
And she practices.<br />
<br />
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<br />
<br />
It is more difficult for her. More strenuous. More work. But I think, also more beautiful. Because I know what it takes for her to even stand at all, let alone stand in position. I know what it takes for her to move her body a certain way, let alone do it gracefully. I know what work it is for her to just try.<br />
<br />
Eventually, I moved to the play room, too. And so did Auri. The girls moved through the positions together. Auri grabbing Esther-Faith's hand at one point to keep her from falling. Convincing Daddy/Uncle Tim to set down the camera and lift them both into the air.<br />
<br />
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<br />
As they danced, I moved slightly away. The music was loud. They were moving their bodies. Dancing. Playing. Enjoying the evening and each other. And she did it again. After months of not, she took three tiny steps into my arms.<br />
<br />
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<br />
<br />
Those positions. Those smiles. Those steps. They make my heart so happy. So full of joy. So full of hope. She may never play Clara or Cinderella or Odette. But she will dance.<br />
<br />
And it will be amazing.Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-6497608915237244910.post-49062118628528124222011-10-10T16:07:00.000-07:002011-10-10T16:07:59.037-07:00CelebrateI was quickly scrolling through the "United by Spina Bifida" and the "Take That Spina Bifida" groups on facebook before I had to turn my attention to homework and nighttime routines. I get maybe five to 10 minutes a day to catch up with people who I consider friends and co-travelers on this journey.<br />
<br />
Tonight, I saw post after post after post of babies, children, and adults doing things that they were cautioned (and some told outright) wouldn't happen. Adults blowing off steam doing something they love. Children standing by pumpkins. Babies beating the odds.<br />
<br />
And I was immediately moved to tears.<br />
<br />
It doesn't take much. But what struck me was that I was looking at photos of children and parents doing normal things, but when I <i>really</i> looked, I realized that these normal, everyday experiences were anything but. Because watching your child walk into a field to pick a pumpkin when you thought he wouldn't walk is worth celebrating. Because watching your friend who has been through dozens of surgeries give birth to a baby is <i>worth celebrating</i>. Because realizing that a baby that was close to death two weeks ago is thriving today is WORTH CELEBRATING!!<br />
<br />
I know it is Spina Bifida Awareness Month and that there is a lot of educating going on, but I think there is even more celebrating. And I love it. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6497608915237244910.post-42840247391864462482011-10-08T13:43:00.000-07:002011-10-08T13:43:51.384-07:00An Easy Spina Bifida Awareness Project<table class="uiInfoTable mvm profileInfoTable"><tbody>
<tr><th class="label"></th><td class="data"><div class="description summary"><div class="text_exposed_root text_exposed" id="id_4e90b36037d791478339984">I love seeing everyone's ideas for spreading awareness during Spina Bifida Awareness Month! Here's my little idea. It's quick and easy, and if all of us did it, it could reach a lot of people.</div><div class="text_exposed_root text_exposed"><br />
Let's all send a "letter to the editor" of our local ne<span class="text_exposed_show">wspapers. (See letter below.) We can't control what kinds of stories papers print, but they usually print letters to the editor as long as they fit the guidelines. If you receive your local newspaper, you will see instructions for submitting your letter. Or you can do like I did and go to the newspaper's web site and figure out how to submit a letter to the editor from there. Start by looking under the "Contact us" or "Opinion" sections for instructions.<br />
<br />
Letters need to be kept pretty short so the paper can publish it, and so they won't cut it as much. You also must include your name and contact information, or they won't print it. To make this easier, I have written a template letter, below. Feel free to change it if you wish, but remember to keep it short. Just copy and paste this letter into the newspaper's form or in an email, and remember to fill in your contact information at the bottom.<br />
<br />
Subject/Headline: Learn something about Spina Bifida in October<br />
<br />
To the Editor:<br />
October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States. <br />
<br />
What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.<br />
<br />
What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.<br />
<br />
What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.<br />
<br />
What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.<br />
<br />
If you would like to learn more about Spina Bifida, visit <a href="http://www.spinabifidaassociation.org/" rel="nofollow nofollow" target="_blank"><span style="color: #3b5998;"><span>www.spinabifidaassociation</span><wbr><span class="word_break"></span></span>.org</a><span style="color: #333333;">.<br />
<br />
Full Name<br />
Address<br />
E-mail address<br />
Daytime phone number<br />
<br />
Join in the Facebook event to report back with which newspapers you submitted your letter to!</span></span></div></div></td></tr>
</tbody></table><br />
<br />
<a href="https://www.facebook.com/#!/event.php?eid=258191650891471">https://www.facebook.com/#!/event.php?eid=258191650891471</a>Colleenhttp://www.blogger.com/profile/17703631579811118354noreply@blogger.com1tag:blogger.com,1999:blog-6497608915237244910.post-57738223335068213372011-10-02T09:57:00.000-07:002011-10-02T09:57:28.520-07:00**Calling All Spina Bifida Friends/Family!!**<div class="date-posts"><div class="post-outer"><div class="post hentry"><a href="" name="8512288496955142112"></a><div class="post-header"><div class="post-header-line-1"></div></div><div class="post-body entry-content"><div style="text-align: center;"><a href="http://1.bp.blogspot.com/-Lepq7GsVM7Q/ToTsFsxVpeI/AAAAAAAABlo/JM1eD1f22QI/s1600/yhst-65361177377116_2122_18335229%255B1%255D.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="50" kca="true" src="http://1.bp.blogspot.com/-Lepq7GsVM7Q/ToTsFsxVpeI/AAAAAAAABlo/JM1eD1f22QI/s400/yhst-65361177377116_2122_18335229%255B1%255D.png" width="400" /></a></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">For many, SB Awareness means promoting possible preventions and making sure every woman of child bearing years is on the folic acid train. Which is fine in some ways, but not really to us! You see, Gretchen and I were amongst those that did everything right during our pregnancy and we still have a child with Spina Bifida. So many times we see those campaigns and ads, and to us, they feel like they are pointing fingers. That is NOT what Spina Bifida Awareness is about!</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">To us, Spina Bifida Awareness is far more positive and inspiring! The darkest part of our Spina Bifida journey was the days and weeks after diagnosis. There are SO MANY unanswered questions, so many unkowns, and so much false information given (even at times by doctors!) that this time was a corridor of darkness. Our hope is to bring inspiration & hope to those walking in that corridor. We hope to share the knowledge that people with Spina Bifida are PEOPLE with wonderful, full, blessed lives. Our prayer is to bring HOPE to each person, hope that even though this is not the path you would have chosen per say, it is a path worth journeying on. </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">To do this we need the help of our Spina Bifida family, and this is where you come in!!!</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Each day of October we want to share a story of hope, inspiration, validation, overcoming difficulties or accomplishing victories from our Spina Bifida family. Also, we would each like to do a "Day in the life of" feature, once a week on our blog! (BTW, if you don’t know us, then you might not know this, but just living a life that SB touches, makes you part of our SB family!) We would LOVE to have you send us a story and a picture to go along with it that you think would further this cause of Spina Bifida awareness. Each day of October we will post one, and through this project pray, we bring the awareness that goes so much deeper than folic acid and prevention (and please hear us, those are important, but they are not the whole picture!)</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">If you would like to be part of this project please send an email to <strong>simplysoares@att.net</strong> or <strong>trw0224@gmail.com</strong> that includes:</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">~Your name, and a little bit about how Spina Bifida touches your life (Do you have it? Are you a parent of a SB child? Are you a Grandparent? Does someone with SB touch your life regularly and you feel lead to share?)</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">~The story you would like to share.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">~A picture or a few pictures to accompany the post.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">~A link to a personal blog or web site if you would like it included with your story (no product or sales sites please!)</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">~An email for us to contact you at.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">We would love to hear from ANYONE whose life is touched by Spina Bifida. We want to include as many views as possible. Are you an adult with SB? Are you married to an individual with SB? Are you the coworker, pastor, employer or dear friend of someone whose life is touched by SB? Are you the grandparent, aunt, uncle or cousin of a child with SB? Are you the sibling of someone with SB? We would love to hear your story! I think you get the picture… We want to hear it all!</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">If we are blessed enough to receive more than 31 stories, we will continue to feature the stories on our blogs, weekly until they have all been told!</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">These stories will be featured on <a href="http://simplysoares.blogspot.com/"><span style="color: #7b1717;">http://simplysoares.blogspot.com/</span></a> and <a href="http://atalw.blogspot.com/"><span style="color: #7b1717;">http://atalw.blogspot.com/</span></a>….. until they have all been told! (and how cool would it be if this just went on and on and on??) </div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Please participate with us! We would love to hear from you!</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">-Gretchen Soares & Tiffany Whalen!</div></div></div></div></div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6497608915237244910.post-79447230976401045582011-09-26T19:43:00.000-07:002011-09-26T19:43:04.985-07:00Long (and promising) day at clinicOur check-in time for clinic was 8 a.m.<br />
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Mimi came over to see the boys off to school so we could head to the hospital early.<br />
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Earlier in the week, our appointments were confirmed. We would see the social worker, urology nurse, neurology nurse, occupational therapy, physiatrist, and some others. We also found out that her renal ultrasound (we have one almost every clinic appointment) was scheduled for 3 p.m. From the outset, it looked like it was going to be a long day. <br />
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Once we got to the hospital, got checked in, and started the process of answering what feels like 1000 questions about the last six months of Esther-Faith's life, we got word that there was a cancellation in ultrasound and Esther-Faith was going to have her renal ultrasound at 9 a.m. instead of 3 p.m.<br />
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Sigh of relief.<br />
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BIG.<br />
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So, 30 minutes from her (new) appointment, we pushed fluids. She needed a full
bladder to get good scans. <br />
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Some folks who we were not scheduled to see stopped in for social visits or just to catch up. One of those people was Brett--the wheelchair tech. Not only is he AWESOME at his job, he is also just a great guy. We shared books we've been reading. Our goals for Esther-Faith. She shared how much faster she wants to go. So, Brett went to his car and got an ultra-light, multi-purpose (can be used for every day or racing) PINK wheelchair for Esther-Faith to try. It did not have a seatbelt or tippers.<br />
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She loved it. L.O.V.E.D it.<br />
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Here she shows off her wheelie skills for Brett.<br />
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While Brett retrieved the fancy, new wheelchair, Esther-Faith and I headed to ultrasound.<br />
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The ultrasound tech was SUPER, VERYMUCH, ULTRA thorough. Don't get me wrong, I appreciate thorough. But seriously, they're not allowed to tell us anything, Tim was waiting back in the clinic room, and the minutes were dragging into an hour. Picture after picture after picture. Not by me, after the first couple of minutes, I forgot I had the camera. I just stared at the black and white screen-- not completely ignorant of what I was looking at, but still more confused than sure. I asked annoying questions. (I know, because she kind of rolled her eyes at me.) After a (really) long time, she gave me a catheter to empty Esther-Faith's bladder so she could get post-void pictures. Some more time (and lots more pictures) later, we packed up and headed back to Tim.<br />
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You'll never guess who was waiting when we got back... NICK!<br />
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Nick (who makes her orthotics) is Esther-Faith's favorite person at clinic. She thinks he makes a great dance partner. And in the morning when we were getting ready to go, she said she wanted to see Nick "first and last." In other words, she wasn't willing to fit anyone else into her busy clinic schedule.<br />
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After Nick, we met with the OT, the developmental pediatrician, the neuro-psych doctor, the pediatric resident, the urology nurse, the physiatrist (and her crew), and the neurology nurse. She hid from more than a few of the doctors.<br />
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I think one of the reasons Esther-Faith has never met a stranger (and why we're having such a difficult time teaching her stranger-danger) is because of appointments like this. Where there are lots of the same doctors she sees from clinic appointment to clinic appointment, but even MORE that she'll see once in her life, but that we ask her to allow to touch her feet and legs, check her shunt, ask her personal questions, and force her to be polite and accommodating.<br />
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I get it, they're learning to be the doctors of tomorrow, but for today, it seems so contradictory to tell her to be wary of strangers--oh but wait, not these ones. Or those ones over there. So, I'm left with questions about how to teach her stranger-danger while learning to trust the right people. <br />
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Some good news... and some great news.<br />
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The good news first: Esther-Faith will be participating in a clinical trial that will--over the course of a year--test for markers in urine that indicate a serious infection. She will also be testing a new, single-use (but more expensive) hydrophilic catheter for the duration of the year to determine if the incidence of UTIs goes down. Her catheters will be supplied (yay) and she'll have her urine tested periodically. We're all about finding new products that will help other SB patients!<br />
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The GREAT news: After talking to the neurology nurse about her symptoms, undergoing some simple tests, and understanding better what we're dealing with, the neurology nurse said that Esther-Faith is NOT experiencing increased tethering of her spinal cord! All SB patients have some tethering (it's the nature of the beast), and some will require de-tethering surgery and some will not. Currently, we are in the WILL NOT category! (Can I get a whoop-whoop?!)<br />
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Things can change fast or slow, and we're still learning, but even though it was one of the longest clinic appointments yet, we walked away with eight prescriptions, an appointment for followup testing with neuro-psych, an appointment for wheelchair clinic, and a script for an eight-week OT session, but feeling positive and reassured! (If not a little apprehensive about a racing wheelchair!)<br />
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After a quick lunch out, we took Esther-Faith to her favorite destination (Build-a-Bear) for a new friend: SNOOPY.<br />
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<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6497608915237244910.post-24387988887276133732011-09-24T23:39:00.000-07:002011-09-24T23:41:06.484-07:00Take THAT Spina Bifida!Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.<br />
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I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers. <br />
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I'll let the video say the rest.<br />
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~Lisa (@ <a href="http://ourlittlemiracle.blogspot.com/">Heaven Sent</a>)<br />
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<iframe width="425" height="349" src="http://www.youtube.com/embed/M0-UC5Vrhaw?hl=en&fs=1" frameborder="0" allowfullscreen></iframe>Lisa @ Heaven Senthttp://www.blogger.com/profile/15795670644423933851noreply@blogger.com0tag:blogger.com,1999:blog-6497608915237244910.post-31586549700288942622011-09-19T15:37:00.000-07:002011-09-19T15:37:16.969-07:00First placeThis past weekend was very busy at the HennHouse. Walk, Run, and Roll. Soccer game. The zoo. Company. Papa's 60th birthday party. Training. Work for mom. In addition to the "normal" stuff we do.<br />
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At the Walk, Run, and Roll, Esther-Faith placed FIRST among the rollers. We're super proud of her. Although, she's not really sure what the fuss is about. She likes to go fast. And fast she went. Sometimes holding onto a hand. Sometimes propelling herself. Sometimes doing a wheelie.<br />
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The point is, she had fun. First place or last. She had fun.<br />
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And we felt so loved to have so many of our friends and family--some in person, some in spirit--supporting an organization that means so much to us. <br />
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What about you? Does your local organization have a Walk, Run, and Roll? A Walk and Roll? Any kind of active fundraiser?<br />
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I would LOVE to create a post with all of the dates and locations of the races around the country. I think my 14-year-old son and I might just start to travel to run them!<br />
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<tr><td class="tr-caption" style="text-align: center;">Hanging out with Coach Ryan.<br />
Esther-Faith loves Coach Ryan.<br />
But when pressed, she will still tell you<br />
that she loves Kate more.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Faster! Faster! Faster!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Isaiah ran the 5K in 26:23.<br />
Then he left immediately and played in a soccer game.<br />I don't think that child EVER gets tired.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Loving on her boy Eamon. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bagels after the race.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Her preschool friend Nathan.<br />
She was SO HAPPY to see him.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Veb41aEt1EY/TnfBfYgafiI/AAAAAAAAG-Y/NBTkAjpJnmE/s1600/DSC_6119.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="http://2.bp.blogspot.com/-Veb41aEt1EY/TnfBfYgafiI/AAAAAAAAG-Y/NBTkAjpJnmE/s320/DSC_6119.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Choosing her first place prize.<br />
A stuffed puppy.<br />
She named it "Pony."</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-ukls35ue9Zc/TnfBsXUxshI/AAAAAAAAG-c/p84oV4lM88g/s1600/DSC_6142.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="http://3.bp.blogspot.com/-ukls35ue9Zc/TnfBsXUxshI/AAAAAAAAG-c/p84oV4lM88g/s320/DSC_6142.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Kristen got to come to the race this year!<br />
Esther-Faith convinced her to run across the finish line with her.</td></tr>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6497608915237244910.post-7550242102477656052011-09-16T17:07:00.000-07:002011-09-16T17:07:56.257-07:00Take THAT Spina Bifida!<div class="date-posts"><div class="post-outer"><div class="post hentry"><a href="" name="5202763765964155412"></a><div class="post-header"><div class="post-header-line-1"></div></div><div class="post-body entry-content" id="post-body-5202763765964155412">In the Spina Bifida world, we have a saying. It's said any time a kid takes his first steps, or smiles after waking up from a surgery, or learns to do a backflip in a wheelchair.<br />
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TAKE THAT SPINA BIFIDA!<br />
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You see, we aren't the type that sits around feeling sorry for ourselves or for our kids. Yeah, sometimes we feel sad for a little while, but we reach out to a friend to pull us back up, and then we get mad again.<br />
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TAKE THAT SPINA BIFIDA!<br />
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We're not taking Spina Bifida lying down. We're not accepting what the "experts" tell us. We are not letting Spina Bifida define us.<br />
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TAKE THAT SPINA BIFIDA!<br />
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That's why we have made a T-shirt with that saying. To remind us that Spina Bifida isn't going get the best of us--we're going to fight back, kicking and screaming.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://takethatspinabifida.blogspot.com/"><img border="0" height="240" rba="true" src="http://1.bp.blogspot.com/-ZfiUBPKE8bE/TnGHITrUckI/AAAAAAAACJc/C8xrtEQYL7s/s320/IMG_0456.JPG" width="320" /></a></div><br />
Want one? Join the movement! <strong><a href="http://takethatspinabifida.blogspot.com/"><span style="color: #4c1130;">TAKE THAT SPINA BIFIDA!</span></a></strong> </div></div></div></div>Colleenhttp://www.blogger.com/profile/17703631579811118354noreply@blogger.com0tag:blogger.com,1999:blog-6497608915237244910.post-57560005126749465972011-09-02T20:21:00.000-07:002011-09-02T20:39:32.595-07:00True Beauty<a href="http://3.bp.blogspot.com/-Tw7HxYQMlIU/TmGg5PSXkJI/AAAAAAAAB5w/kkZTWhj_Q4A/s1600/random%2B065.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5647972312915873938" border="0" alt="" src="http://3.bp.blogspot.com/-Tw7HxYQMlIU/TmGg5PSXkJI/AAAAAAAAB5w/kkZTWhj_Q4A/s320/random%2B065.jpg" /></a>
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<br /><div align="center">One thing I used to mourn when I was pregnant with Toby was how different Gracie's life would be. When we first found out we were expecting we were excited for us as a couple, but we were excited for us as a family more. Gracie would have a sibling and being only 15 months apart would seem to have to guarantee closeness. I pictured days of playing, park visiting, running and all kind of things.</div>
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<br /><div>After the dreaded diagnosis day I mourned different things and for different people. But man did I mourn for Gracie. I cried and cried about how different her life would be. How she would have to always be second. How his needs to a degree would always come before hers. How long I would be away from her. How much Toby would need me and how much she would have to grow up.</div>
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<br /><div>Parts of what I mourned are true. She did grow up faster. She deals with things as Toby's sister other kids dont even think about. (just the other day she got a chunk of hair pulled out because her hair got stuck in tobys braces when they were playing) She doesnt get to play the same way that some of her friends get to play with their brothers and/or sisters. She does have her mommy taken away more often for doctor's appointments, therapists and things. She deals with more stress when mommy and daddy get stressed about something coming up in Toby's life. </div>
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<br /><div>Toby is toby and man we love him, but he's not the easiest brother to get a long with.</div>
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<br /><div>And their relationship is lots of love with a little hate mixed in. </div>
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<br /><div>But I write this post not to share the woes of Gracie's life. I'm sure I havent even tapped the surface of what goes on in her head with everything. But I write this post to share Grace's beauty. </div>
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<br /><div>Toby life has made her more beautiful. Toby has allowed Grace to learn unselfishness faster than I could ever teach her. Toby has taught Grace about serving others. Toby has taught Grace patience. Toby has taught Grace the meaning of true love through tough times. Because of Toby Grace is who she is today. Toby has helped shaped Grace. He has helped make her beautiful. Her spirit is one of the most beautiful that I could ever describe. Toby's life has enabled Grace to learn life lessons few adults truly understand. </div>
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<br /><div>I look back at my tears for Grace and smile. Yes sometimes the tears still come, yes sometime its hard on her. But there is a smile through those tears now. (which isnt it almost always that way) Grace is beautiful beyond belief not because of her outward.....but because of everything that is within her.</div>
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<br /><div>This post came to my mind and these thoughts more clearly than ever before. For the past week we've been buckling down harder on Toby's back brace and leg brace. Well every morning Grace goes straight to his room and takes it off. I've never asked her to, Toby's never asked her to. She just does it. She gets in his bed and without a word starts to unstrap all the straps. She loves her brother and the older she gets the more she understand that things are harder and more difficult in his life. Today I snuck in and took a quick shot of her. I love this girl. </div>
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<br /><div><a href="http://4.bp.blogspot.com/-Lo_QklYfso0/TmGg42ixudI/AAAAAAAAB5o/QvGihywZgzw/s1600/random%2B089.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 240px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5647972306273810898" border="0" alt="" src="http://4.bp.blogspot.com/-Lo_QklYfso0/TmGg42ixudI/AAAAAAAAB5o/QvGihywZgzw/s320/random%2B089.jpg" /></a>
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<br /><div>I hope that as you might be in different stages of this journey that you will remember how our children's lives truly make us and the people around us have true beauty. </div>
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<br />Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com1tag:blogger.com,1999:blog-6497608915237244910.post-67139551575360363702011-08-26T12:40:00.000-07:002011-08-26T12:50:20.011-07:00For you all with love
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<br /><div align="center">So you know how I like to pretend? </div>
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<br /><div align="center">I like to pretend to be a photographer, I like to pretend to be a crafter, I like to pretend to be a teacher.... : )</div>
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<br /><div align="center">Well, now I'm pretending to be a graphic designer. <em><span style="color:#ffcc33;">Leigh Gibbs DO NOT SHOW your husband or tell him please! :) </span></em></div>
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<br /><div>I'm just pretending. Anyway I've been thinking about things I wanted to do around my house, but then started thinking about something not so self centered. </div>
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<br /><div>I thought, its been a while since I've contributed to the Spina Bifida Community.</div>
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<br /><div><span style="font-size:130%;">So here's my newest contribution</span> </div>
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<br /><a href="http://3.bp.blogspot.com/-vqpDtYiOZq4/Tlf3ljH3YKI/AAAAAAAAB5I/4i1MIi4BY9w/s1600/able.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 240px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5645252882387656866" border="0" alt="" src="http://3.bp.blogspot.com/-vqpDtYiOZq4/Tlf3ljH3YKI/AAAAAAAAB5I/4i1MIi4BY9w/s320/able.jpg" /></a>
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<br /><div><a href="http://1.bp.blogspot.com/-zdqBdi5gpoM/Tlf3lNmjt0I/AAAAAAAAB5A/RdHsLrzvU-U/s1600/redefine1.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 224px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5645252876610811714" border="0" alt="" src="http://1.bp.blogspot.com/-zdqBdi5gpoM/Tlf3lNmjt0I/AAAAAAAAB5A/RdHsLrzvU-U/s320/redefine1.jpg" /></a>
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<br /><div><a href="http://4.bp.blogspot.com/-_MWyrwJGxDs/Tlf3k1grDrI/AAAAAAAAB44/eDeLEb0G94Q/s1600/piggiefly.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 224px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5645252870143676082" border="0" alt="" src="http://4.bp.blogspot.com/-_MWyrwJGxDs/Tlf3k1grDrI/AAAAAAAAB44/eDeLEb0G94Q/s320/piggiefly.jpg" /></a>
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<br />They are just images I've worked up the last couple days on my computer. Do what you want with them or do nothing at all. I was on walmart.com the other day and realized the amazing products that are out there. You can get any image printed on just about anything. Coffee cups, canvas, magnets, You name it, they print it. So I thought this would be an easy way for me to do a project without worrying about shipping you all things : ) we know how good i am at that.</div>
<br /><div>I hope you like. </div>
<br /><div>To view the full image or copy the image click <a href="https://picasaweb.google.com/112856977298767009094/FreePrintables?authkey=Gv1sRgCJTRkIuwre3UWg#">here</a> This is free. I have zero copyrights on them. Feel free to use, and pass around. I'll also put them up on pinterest if anyone is interested.</div>
<br /><div>I do love all you guys and know that I'm thinking of you all the time.</div>
<br /><div>I'm open to suggestions too if anyone has something like this theyd like created.
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<br />Kari Thomashttp://www.blogger.com/profile/03129831816864881654noreply@blogger.com4