tag:blogger.com,1999:blog-16172982453979581972024-03-13T20:47:36.605-07:00Lil' Samsquatch...a lil' girl leaving a big 'ole footprint on the world!Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.comBlogger139125tag:blogger.com,1999:blog-1617298245397958197.post-52127158286285928812014-01-14T15:10:00.000-08:002014-01-14T15:10:04.258-08:00Sweatin' for Sammy 2014 <div class="separator" style="clear: both; text-align: center;">
Yes, it's that time of year again. And I get nervous, and scared, and and and....</div>
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This year we've added a new category: Remote Runner. If you can't make it to the event, you can sign up, we send you your shirt and bib #, and you can race when and where you'd like. You're with us in spirit :) </div>
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And my time is being completely consumed with this event, which is sure to be a great day. </div>
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I haven't written here in a long time, and truthfully, I will probably write a ton more on our family blog: </div>
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<a href="http://www.marcusandjenny.blogspot.com/">The Green Piece.</a></div>
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It seems more natural for me to write there, so for any updates, check out our family blog. I'll occasionally write here most likely...I can't totally drop her blog. It doesn't feel right. But for now my attention is set on other areas.</div>
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So much to do, so little time, right? Sheesh.</div>
<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-42531810822857736652013-07-02T16:02:00.001-07:002013-07-02T16:03:11.712-07:00Preparing for... "Here We Go"I can't believe it's time again to go out to Utah for therapy. Seriously?! Seriously. There seems like there's so much to do before we leave, mainly on the car. <br />
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Samantha's had a really rough 6 months. She's been sick a lot and has had seizures pretty regularly. Between that and growing, her muscles are so tight. I try to stretch her, but she hates it and doesn't cooperate (fancy that!), and I'm just not as effective as trained therapists. So, I'm really hoping that she'll be able to get some of her range back when she gets to therapy.<br />
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Last year at therapy, I said, "This is probably the last time we'll do this." And now, preparing to go, I'm saying, "This will probably be the last time I make the trip." Who knows? It's hard work to go, be away from Marcus for a month, live in someone else's place, and this year I have 3 kidlets coming with me. But, when I see the progress she makes, it's hard for me to stop.<br />
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Soon I'll be writing about therapy again, posting pictures, and probably crying because it's kind of an emotional trip. But, I'm banking on the fact that it'll all be worth it.<br />
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Now, to get ready and survive this heat in the process!Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com2tag:blogger.com,1999:blog-1617298245397958197.post-19680504783231426792013-06-23T14:08:00.000-07:002013-06-23T14:08:08.356-07:00SevenToday Samantha is 7 years old. I can't believe it. I really don't understand how 7 years went by so quickly. I have so many thoughts in my head, thoughts I want to get down, for right now...<br />
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Happy Birthday Sweetheart. <br />
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I'm going to go finish up your cake with whipped cream frosting...because that's your favorite (and we know because you get all jumpy and squeal in delight)...and we'll celebrate with everyone. We love you so much. You bring so much joy and light. I'm privileged to be your mommy.<br />
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-84229475375713412952013-06-12T15:45:00.000-07:002013-06-12T15:45:37.338-07:00Redefining BeautyIf you have a child with a disability, do you remember the day son or daughter was diagnosed? Do you remember sitting with the geneticist? I do. I remember it clearly. Both times (because we have done this 2x), we sat with the geneticist and they really weren't able to give us too much information. The first time, Samantha was still an infant. And so, we went home, and I went to Google. I didn't want to. I think I held off for a good 15 minutes before succumbing to that evil search engine! And the images that came up broke my heart.<br />
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I now know that pictures don't define my daughter...but they do certainly impress a lasting impression on one's mind. And in the very beginning, when you are moving forward inch by inch, hanging on words and phrases that doctors give you...those pictures can make you feel like any and all future for your child is doomed.<br />
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That's why I loved <b><span style="font-size: large;"><a href="http://photoblog.nbcnews.com/_news/2013/06/07/18831654-fashion-photographer-focuses-on-those-with-genetic-conditions-to-reframe-beauty">this story</a>.</span></b> I love what this fashion photographer is trying to do ~ to redefine beauty, to open our eyes, to help us see hope, love, and beauty in our children.<br />
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How would I have felt if instead of pictures like the ones I saw, when I typed in microcephaly these images popped up? I could have still seen tight arms, smaller body frame, facial features...but they are also just really cute pictures, aren't they?<br />
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<tr><td class="tr-caption" style="text-align: center;">Ok, I could have found a cuter picture. But still. She's so cute.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Look at the light in those eyes. Our doctors gave us no hope for light...but it beams from her.</td></tr>
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That's one reason why making Samantha's story public is important to me. Search microcephaly today, and you'll see her face pop up, among the many other pictures. Parents need <i>real</i> information...the everyday stuff. They need hope. They need comfort. They need reassurance. And with all the pain, they need to see the smiles and the beauty. I love this man for the work he is doing. His influence will help many families, and hopefully even change the medical books.Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com6tag:blogger.com,1999:blog-1617298245397958197.post-32674767191026452892013-03-07T23:12:00.004-08:002013-03-07T23:12:39.116-08:00Passionate About a Park<br />
Yesterday I was invited to give a 3 minute presentation at the Rotary Club of San Jose. I was honored. San Jose's Rotary Club is among the largest in the nation. You can imagine how many people want to connect with the Rotary Club and present ideas, and so, there are very strict rules and they don't let people in very often. However, because <a href="http://www.sweatinforsammy.com/">Sweatin' for Sammy</a> is raising funds for the <a href="http://www.rotaryplaygarden.org/">Rotary Playgarden</a>, I was invited to attend and speak. <br />
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I really did feel honored. The large conference room was packed. And my time went quickly. I was there to introduce to the Rotary Club at large what Sweatin' for Sammy is, but more importantly, to share why I feel so passionately about the Rotary Playgarden. I knew that most of the Rotary Club was enthusiastic about their park project, but I was also aware that there were a few who weren't convinced this park was for the betterment of the entire city and they were swaying others. This was an opportunity for me to share how important I felt this park was for everyone, and to speak from my heart. That, I did. I was surprised that my emotions got the better of me not once, oh no, but TWICE. It was fine. I just choked up a bit. But that was completely unexpected, but it all worked out. This is basically what I said:<br />
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(I thanked them for allowing me to be there with them...and then........)<br />
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<i>Sweatin' for Sammy started as an event to benefit my daughter. Samantha was born with a very rare genetic condition and so, as you imagine, we live the special needs life</i> <i>... doctors, specialists, therapies, seizures. But it's also a life filled with joy, love, and miracles.</i><br />
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<i>I'd like to share with you why I feel so passionately about the Rotary Playgarden. Let me share a little of my background to explain. Before Samantha was born, I was a high school teacher. In my education classes in college, I remember being taught that if we use methods in our classroom that support our struggling students, then all students would benefit. And so, when I got my own classroom, I tried to use a variety of teaching methods. By the end of the year, what I discovered was that those struggling students improved academically, but they also gained confidence. My high-achieving students not only continued to receive good grades, but because of the methods used, they were also given leadership opportunities and gained important social skills. Lives were changed in a classroom.</i><br />
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<i>I compare that with the park you are building. The Rotary Playgarden will be built in such a way that ALL children, ALL families in San Jose and surrounding cities will benefit. Without this park, the same children and families will continue to fall through the cracks. So, we build sensory stations, we have sand, water, and music play. We have more high back swings and ground made out of different material...and more. The kids who can't play at our parks within the city now can explore and interact with the world around them. While your average neurotypical child...he just loves going to the new cool playgarden -- a place where while they're having fun they gain greater awareness and compassion. I have found that people who have little interaction with special needs are uncomfortable around those individuals who are different than themselves. But the more interaction they have with then, the more comfortable and connected they feel with those members of our community. I feel this is more than helping a few families, but this is about knitting our entire community together. Lives will be changed in this playgarden. </i><i>It's these inclusive play experiences that create leaders...this is the rising generation, interacting together, in an inclusive environment. </i><br />
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<i>This is the park I have dreamed of for my family. A place where we can all run around an play. This is the park that my paraplegic friend has dreamed of for her family . A place where her wheelchair can roll alongside her boys who laugh and play. </i><br />
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<i>We are excited about the Rotary Playgarden here in San Jose, and that is why we are proud to be supporting it and helping to raise funds.</i><br />
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And then I explained Sweatin' for Sammy a bit.<br />
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It went well. I got a lot of great feedback that I was able to take back to our committee. I love Sweatin' for Sammy and what it's becoming. I love that we have this way to take care of Sammy's needs...but the fact that we are growing and are able to support other projects and help other families...it's really exciting. I say that all while holding my breath because we still need people to register in order to make money, but I have faith that it'll all come together and April 20, 2013 will be an amazing day.<br />
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Anyway, my overall objective was to draw people to our event and raise money. Every registeration counts. Every $1 donated counts. And, on April 21 we'll be adding it all up. (sigh) It's nerve wracking, but also really really fun and exciting. <br />
Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-89572724929682545382013-02-02T20:37:00.000-08:002013-02-02T20:37:14.346-08:00Tender MomentsI've been feeling very tender about Samantha lately. I'm not sure why, necessarily. Maybe because she's growing so quickly all of a sudden. Or because we just ordered a stroller for her -- that costs a few thousand dollars (more on that later). Or maybe because lately, I've just been in awe at her beautiful smile. She smiles so big. And it makes me melt.<br />
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Tonight, we watched a movie. Sammy came over, climbed up on my lap, curled up, and fell asleep. I didn't want to let her go. And so, I held her for a long time before I put her to bed. It was just me with my right arm around Callie, and Sammy sitting on my lap. I felt as if I were surrounded by angels...not just the 2 sitting with me. <br />
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Though I feel like I truly am "ok" with her life -- her disabilities and the struggles that she and we face because of them -- I have recently been thinking a lot of "what if." I really wonder who she would be if she had been born without a faulty mortal body. Quite frankly, I think she'd be a pill! But she'd still be tender and loving and ... probably the same way she is now in many respects. I've struggled a lot with some of these feelings I've had, and I can easily ignore them because I am working on other projects that distract me. And then, there are nights like tonight, when the house is quiet, it's just us, and her spirit and mine connect...peacefully. And I'm reminded of what a blessing she is in my life. And I forget about the what ifs. Because she's mine and my life is more full because she's in it.<br />
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I was reminded of this song. I've shared it before. And I guess I wanted to torture myself and cry like a baby, so I listened to it again. I love it. <br />
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<iframe allowfullscreen="" frameborder="0" height="360" src="http://www.youtube.com/embed/oj6GXVTAOiU" width="640"></iframe>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com2tag:blogger.com,1999:blog-1617298245397958197.post-63132123281827567092013-01-16T19:22:00.001-08:002013-01-16T19:31:58.252-08:00Sweatin' for Sammy Helps OthersFor years I have had a dream. That dream was to build a park in our city that everyone could play at. I have so much fun at the park with Callie, but quite honestly, it's kind of a headache taking Samantha to the park. When she was younger, it was ok because she could fit into the baby swings. And she loves the swings. But now that she's older, it's difficult for me to get her in and out of those small baby swings. There are some parks that have high back swings for special needs kids, but let's be honest...every kids loves those swings and they are ALWAYS being used by someone else. And I'm not about to go and tell some kid to get off the swing. I just can't do that.<br />
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Tanbark is difficult for Sammy to walk on. There are ledges along the playgrounds that often make it challenging for her to walk up and down. And really, there's just not much she can do.<br />
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Little by little, I came up with what I wanted Sammy and other kids like her to have. I thought of my nephew, too, who is in a wheelchair. What would he want to do but can't at a park? I had plans for him and kids like him. <br />
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I talked with my committee for Sweatin' for Sammy and the director of the non-profit we use, DCipher Group Foundation. I asked them how they would feel using Sweatin' for Sammy as a way to raise some money to create this park. I had my architect, I had what I wanted, all I needed was money and I was getting ready to approach San Jose with my plans. I needed them to donate the land. I was looking at old parks that needed renovation and was going to suggest they NOT spend the money renovating and give it to us...and in 5 years time we'd have a special needs park -- all accessible park -- that would bring people to our beautiful city.<br />
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We were all on board.<br />
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Then, I was made aware of the fact that the San Jose Rotary Club was beginning this same project! I was momentarily disappointed thinking that my dreams weren't going to be JUST as I imagined. But relief hit when I realized we could support them and I'd have a huge load off my shoulders! Wahoo! Planning a park is not easy, and if I could just help with fundraising, yeah!<br />
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So, this year, I am proud to announce that Sweatin' for Sammy is again raising money for Sammy's therapy....(check out our new logo) and after those costs are met......<br />
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we will be making a (hopefully LARGE) donation to the San Jose Rotary Club to help build the <a href="http://www.rotaryplaygarden.org/"><b><span style="font-size: large;">San Jose Children's Play Garden</span></b></a>. Look at the link and see their great plans. <br />
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I'm excited for the future with our family as we visit this park. <br />
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I'm excited that Sweatin' for Sammy is not only helping Samantha, but so many other families in our community. <br />
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I'm also really excited to see how much money we can raise.<br />
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Come be a part of this year with us. And if you've joined us in the past...join us again. It's going to be a great year. <br />
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-11703126375491838002013-01-14T20:48:00.000-08:002013-01-14T20:48:05.055-08:00Better<div class="separator" style="clear: both; text-align: left;">
Poor Sammy's been having some serious problems with her feet. I usually don't get into the pity-party mode, but a couple weeks ago I was so frustrated and just thought... "Most kids don't have to deal with this. Most MOMS don't have to worry about this." And I was just upset and sad and frustrated and annoyed. </div>
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The story is long, too long, to write. But a lot of factors played into why Sammy's right foot has gotten so bad. Some of those factors are bad decisions made by professionals. Whatever. Moving on. Below is a picture of her right foot. She had worn her night cast -- she wears casts at night to stretch her achilles tendon as she sleeps -- and this is several hours after her cast has been off. Look at that redness. This picture was taken last week and it's now beginning to fade after not wearing casts or braces as she should. </div>
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So. Frustration. Anger. Annoyance. Sadness. Back to that.<br />
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During the Christmas break, I took time to really work on Sammy's legs and feet. She would be home all day and I just knew I could "fix" it, or improve her foot at least. I began to massage her feet and legs 2x a day. Whenever she was standing and playing, I'd come up to her and put downward pressure through her hips and legs. I used essential oils as I massaged her. She took many more warm baths than she normally does, so we could loosen her up. And all those feelings I had had melted away. They were replaced by love and gratitude. I was helping her. And that time we spent together was happy time. It wasn't always easy, but I knew I was helping her and there was an exchange of mother/daughter love during those times of service. <br />
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I love being Samantha's mom. She adds so much light to my life. I'm constantly reminded that those harder times are important because they bring added joy to my every day. And, every day, she makes me a better person. It never fails that I only recognize this AFTER the problem, but that's ok. I'm still trying to be better. And she's helping me.Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-71094678702277400942012-11-15T15:49:00.002-08:002012-11-15T15:49:50.073-08:00Sammy at Now I CanNow I Can sent this video a while ago and I keep forgetting to post it. It's funny to watch this video after being home for a few months. It brings me back to those long days...and I just feel so grateful. Grateful for the therapists and staff who work there. Grateful for a beautiful daughter who teaches me compassion, patience, and charity. Grateful for friends, family, and strangers who help us get there. My heart is full.<br />
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Watch the video <a href="http://animoto.com/play/wrf0XwmFah0nJoAP9P6j9Q">HERE</a>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-8848301656826221532012-09-23T16:22:00.000-07:002012-09-23T16:22:27.510-07:00WalkingAfter our last session at Now I Can, I was happy with what was done, but I also felt like Sammy hadn't made as much progress as she had in the past. Sergio and Nacole were happy with what Sammy was doing, so why wasn't I? Sergio told me that I'd see a difference when she got home.<br />
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Well, I have seen a difference, and I was able to capture some of it on video.<br />
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One of Sammy's big problems is that she moves super fast -- she has no control. And because of that, she hunches over. She is definitely standing up straighter and taking smaller, slower steps. This is actually huge progress and we're really happy. Yes, we need to work on her upper body and being down on her heals, but I'm still pretty thrilled. Way to go Sammers!<br />
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<iframe allowfullscreen="allowfullscreen" frameborder="0" height="360" src="http://www.youtube.com/embed/4tp98ikrfZ0" width="640"></iframe>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-72915066294145555342012-09-21T17:12:00.001-07:002012-09-21T17:12:24.449-07:00O Brother!<div class="separator" style="clear: both; text-align: center;">
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Sammy's a big sister again! </div>
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Welcome home baby Micah! We love you so much.</div>
Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com2tag:blogger.com,1999:blog-1617298245397958197.post-34869519314505424832012-08-03T15:55:00.000-07:002012-08-03T15:55:59.453-07:00Week 1: Over<div class="separator" style="clear: both; text-align: center;">
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More pictures on our <a href="http://marcusandjenny.blogspot.com/2012/08/wednesday-already.html">family blog</a></div>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-8366774615542447362012-07-31T16:20:00.001-07:002012-07-31T16:20:27.544-07:00We're BackWell, Sammy is back in therapy here in Utah at Now I Can. I've been really distracted the past 6 months and I have not done as great doing at-home therapy with Sammy as I had been in the past. CCS (California Children's Services) is where Sammy gets most of her physical and occupational therapy. She also gets that and speech through school. Previously, Sammy had PT 2x a week and OT 1x a week. They have slowly been dwindling that down and she now gets PT 2x a month and OT 1x a month. I've questioned the point in it all, and even asked if 1x a month did anything for her. The response was "No, but it keeps her in the program." And then I question, do I even want her still in the program? At what point is enough...enough? I think it's a question we'll all face at some point....maybe.<div>
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Anyway, I've thought a lot about it. I've prayed about it. And about a week ago, I feel like I really got my answer. There is more to do. I can't tell you how that answer came to me really, but it was an answer and I recognize it as an answer to my prayer. And, it was motivating. I really wasn't looking forward to coming to Utah again. I'm tired, and quite frankly, a little burned out. But I'm glad we're here. This is where Sammy needs to be right now, and I feel like I have the Lord's support in finding what therapy Sammy needs. That's a good feeling.</div>
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</div>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-21661060840318871662012-06-06T22:06:00.000-07:002012-06-06T22:06:00.151-07:00Sisters<div class="separator" style="clear: both; text-align: center;">
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I love this picture. On this particular day, we were spending some time as a family at a park around her. Vasona Park. It was a beautiful day. I think, actually, we were there celebrating Marcus' birthday. The picture is now a year old, but my feelings are still fresh.<br />
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When Callie entered our lives, I knew she had a special connection with Samantha. I felt that before we even met her. Over the next few months, I'd notice patterns. Callie seemed to sense certain things about Samantha that we couldn't. In the evening, Callie would get super fussy about an hour before Sammy would have a seizure. I didn't recognize it at first. It was my mom who pointed it out to me, and then, sure enough, I saw the pattern. Callie has always been proud of Sammy. She has gone through phases of being annoyed with her (which I consider healthy), but she is one of Sammy's biggest cheerleaders. She enjoys helping her in any way she can. She shares with her. She hugs her, carries her (yikes!), and kisses her. I frequently here Callie say, "Aw Sammy. You have such a cute little head." In the past, when Sammy would cry more often, Callie would try to calm her by saying, "It's ok Sammy. It'll be ok. I'm here. There you go." She has always taken a motherly, or rather...a protective role when it comes to Samantha. Though Sammy adores Callie, she most likely takes for granted how important Callie is to her. One day she'll know. <br />
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Early on, Samantha did not like Callie. It wasn't anything against Callie, it was the fact that there was a new baby in her mommy's arms (which I also consider healthy). But over time, she has grown a tight bond with her big little sister. She adores Callie. I think it's among the few words she says, in fact. Callie is her playmate, sister, and friend. She gets excited to see Callie which is clearly evident as her face lights up and her squeals and laughter are heard. And Callie loves Sammy so much, partly, because she knows how much Sammy loves her. <br />
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Pictures can only show so much. But occasionally, when it's a really great picture, it really does say so much more than words can. It doesn't have to be a professional picture, just a picture that touches your heart. This is one of them for me. In my eyes, this accurately represents their relationship. Sammy playfully is looking off, distracted by something ~ while Callie holds her head up higher, eyes wider, looking around, watchful. Callie sits in front. A leader. Sammy, full of trust and submission, gratefully and cheerfully sits behind. Both of them are happy, though Callie's face shows her self-appointed sense of duty. <br />
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I love these girls, and I love this picture. Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com2tag:blogger.com,1999:blog-1617298245397958197.post-42685017615489199472012-05-30T21:43:00.001-07:002012-05-30T21:44:38.636-07:00Loving Our SammyThank you, again, for all who were involved with <b><span style="color: #6aa84f;">Sweatin' for Sammy</span></b> one way or another. I can't express my gratitude enough. I have always thought of Samantha as a blessing. Yes, there were times, especially early on, when I was sad about the situation. But I have never been sad about<i> her</i>. She has brought so much joy to my life. Her disorder/condition have brought me frustration, sadness, and emotional pain. However, her little self has brought more joy than I could <i>e v e r </i> imagine. But, you know...the microcephaly and cerebral palsy and epilepsy...they are a part of her. So, in a way, yes, those things bring me happiness too. hmm Weird.<br />
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<b><span style="color: #6aa84f;">Sweatin' for Sammy</span></b> is more than just a way for her to have money to cover this therapy in Utah. Long term, it will cover <i>other</i> therapies that have been recommended for her that we would like to try. It will cover other medical expenses and/or medical equipment that she will need. <br />
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<b><span style="color: #6aa84f;">Sweatin' for Sammy</span></b> started as a fundraiser, but it has become something more special to us. I love crowds and parties! And this day that we devote to Sammy has become, to us, a celebration of Samantha. It's a party to celebrate her life. The money is important and fantastic. It goes right to her trust and we can use that to make sure she gets all that we hope to be able to provide for her. But...she is an amazing little girl. And it's hard for me to keep dry-eyed at the end of Sweatin' for Sammy when I think about all the people there<span style="color: #cc0000;"><b> loving our little girl</b></span>, whether they know her or not. I truly feel honored to be her mother. <br />
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The other day Marcus and I talked to a friend on the phone. As she talked about Samantha, I felt overwhelmed with so much love. I know there are other ways, surely, that I could have learned the lessons that I'm needing to learn in this lifetime...<span style="color: #45818e;"><b>but I am grateful</b></span> that my Heavenly Father chose to teach me through Samantha. She <b>is</b> all things good. And I'm grateful to have her in our home and in our life, forever.<br />
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For all who have asked, I posted on our<a href="http://marcusandjenny.blogspot.com/2012/05/thank-you-all.html"> family blog</a> about the grand total.<br />
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Again, thank you to all who came because you know her, love her, don't know her but want to, or just because a friend dragged you along. No matter why you were involved, I love you for it. <br />
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<tr><td class="tr-caption" style="text-align: center;">Sammy's teacher and friend from school. Samantha's teacher is nothing short from phenomenal. We are greatly blessed that Sammy is in her class and that Laura came to Argonaut this past year. Sammy plays on the playground with this little boy. He seems to have a special connection and affection for her. I deeply love his parents for teaching him to see Sammy and other kids like her as his equal.</td></tr>
</tbody></table>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-6724498576701742942012-05-20T14:48:00.001-07:002012-05-20T14:48:52.203-07:00Sweatin' Preview<div class="separator" style="clear: both; text-align: center;">
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-76743364046149883842012-05-18T16:57:00.000-07:002012-05-18T16:57:11.599-07:00Getting Ready to SweatI am getting very ready for tomorrow's big day. Yesterday we went to packet pick-up and got our t-shirts and bib numbers. I was so excited I could hardly contain myself. Road Runner was awesome. Even though we are among the smaller events that do packet pick-up there, the employees were full of energy and so fun. Callie had a great time playing red light, green light with the employees there as she waited for me.<br />
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We have awesome t-shirts this year. </div>
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We have about 500 bananas in the minivan.</div>
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We have a ton of bagels that I need to fit into the van.</div>
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We have 200 Nutrigrain bars.</div>
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We have about 500 energy bars.</div>
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And even more food.</div>
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600 bottles of water.</div>
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More people are still registering.</div>
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Sammy will be on the NBC news tonight.</div>
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Firefighters are scheduled to come cheer the kids on during their race.</div>
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Music is set.</div>
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Prizes packed.</div>
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And we're doing all those final touches, hoping we don't forget anything.</div>
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I am filled with so much gratitude. Last week, I was worried that people wouldn't come. But then, I didn't care. Something happened and I just didn't care anymore...not in a bad way...in a good way. I realized that whoever was there would be celebrating Samantha with us, and that was enough for me. I felt calm and really really blessed. And now, in the 11th hour, I cannot believe what is coming together. Sponsors deciding to write another check, just because. What?! People signing up, just because they want to be a part of it. Volunteers coming out of the woodwork, just because they want to be there. I'm touched. I'm excited. I'm so so happy.<br />
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I remember when I did the Hellyer 1/2 Marathon a couple months ago. I was so excited. Well, honestly, I felt some dread at the same time...but that morning I was so excited. When I sit back and think about the people who will be there, excited to run in this race, and that it is all because of Samantha, it makes my heart overflow with such love and gratitude. <br />
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So, here's to tomorrow, and here's to Sweatin' for Sammy!Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-50947526967374316492012-05-07T09:46:00.001-07:002012-05-07T09:47:06.942-07:00Little AngelA family friend, Britney Black, created this video for a school project. It was nominated to go to the film festival among the middle schools...way to go Britney! For more details for Sweatin' for Sammy...scroll down.<br />
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<iframe allowfullscreen="" frameborder="0" height="360" src="http://www.youtube.com/embed/xDDpPXzE1ZI" width="640"></iframe>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-27370381133993721712012-04-20T19:32:00.000-07:002012-04-24T13:07:51.804-07:00Sweatin' for Sammy 2012<span style="font-size: large;">Be a part of the fun and help us raise money to get Sammy to <a href="http://www.nowican.org/"><strong>Now I Can</strong></a> again this coming year! </span><br />
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<span style="font-size: large;">What: <span style="color: #38761d;"><strong>Sweatin' for Sammy 2012 -- 10K, 5K, Kids' Fun Run</strong></span></span><br />
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<span style="font-size: large;">When: <span style="color: #38761d;"><strong>Saturday, May 19, 2012</strong></span></span><br />
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<span style="font-size: large;">Where: </span><span style="color: #38761d;"><strong style="font-size: x-large;"><a href="http://www.sccgov.org/sites/parks/Maps%20Here/Pages/Hellyer-County-Park.aspx">Hellyer County Park</a> </strong>985 Hellyer Avenue, San Jose, 95111</span><br />
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<span style="font-size: large;"><span style="color: #38761d;">~*~*~*~*~</span></span></div>
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<span style="color: #660000; font-size: large;"><b>Kids' Run Specifics</b></span></div>
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">Kids' Fun Run starts at 10:30am</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">Race day registration is at 8am IF we are not sold out -- limited to 100 Kids' Run participants. If you are interested, please register online to secure a place for your child. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">Kids Run distances:</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">30 yards -- 2-3 yr olds</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">100 yards -- 4-5 yr olds</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">200 yards -- 6-7 yr olds</span><br />
<span style="background-color: rgba(255, 255, 255, 0.917969); color: #222222; font-family: arial, sans-serif; font-size: 13px;">300 yards -- 8-9 yr olds</span><br />
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<span style="color: #38761d; font-size: large;">~*~*~*~*~</span></div>
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<span style="font-size: large;">For <em>more information and to register</em>, visit </span><a href="http://www.sweatinforsammy.com/"><span style="font-size: large;"><strong>www.sweatinforsammy.com</strong></span></a> or <a href="http://www.active.com/running/san-jose-ca/sweatin-for-sammy-2012"><strong><span style="font-size: large;">http://www.active.com/running/san-jose-ca/sweatin-for-sammy-2012</span></strong></a><br />
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If you were there last year, no doubt you were sweatin' for Sammy (or...hikin' for Sammy) on the trail at Quicksilver. This year we are on a <strong>paved, flat trail</strong>!<br />
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<span style="color: #bf9000; font-size: x-large;">Thank You to our Sponsors!</span><br />
<span style="color: #cc0000; font-size: x-large;">Amato Pizzeria </span><span style="color: #cc0000;">(<a href="http://www.amatopizzeria.com/">www.amatopizzeria.com</a> </span>408-997-7727<span style="color: #cc0000;">)</span><br />
<span style="color: #cc0000;"><span style="font-size: large;">JM Williams Accountancy</span> (<a href="http://www.jmwac.com/">www.jmwac.com</a>)</span><br />
<span style="color: #cc0000; font-size: large;">Kevin Calvert DDS/Christopher Walton DDS </span><span style="color: #cc0000;">(</span><a href="http://www.calvertdds.com/">http://www.calvertdds.com/</a>)<br />
<span style="color: #cc0000;">Saputo Cheese (</span><a href="http://www.saputousafoodservice.com/">http://www.saputousafoodservice.com/</a>)<br />
<span style="color: #cc0000;">Jim Pojda: Alain Pinel (<a href="http://www.jimpojda.com/">www.jimpojda.com</a>)</span><br />
<span style="color: #cc0000;">R. Martin Judd DDS (</span>408-377-3366<span style="color: #cc0000;">)</span><br />
<span style="color: #cc0000;">The Learning Map (<a href="http://www.thelearningmap.blogspot.com/">www.thelearningmap.blogspot.com</a>)</span><br />
<span style="color: #cc0000;">Motif Spa (</span><a href="http://www.motifspa.com/">http://www.motifspa.com/</a>)<br />
<span style="color: #cc0000;">Leonard Peterson DDS </span> (408-873-8484)<br />
<span style="color: #cc0000;">Diamond Fence Company (</span><a href="http://www.diamondfenceco.com/">http://www.diamondfenceco.com/</a> 408-374-4282)<br />
<span style="color: #cc0000;">Araujo's Mexican Grill </span>(3070 Senter Rd 408-300-0814)<br />
<span style="color: red;">Elo Photography (<a href="http://www.elophotography.com/">www.elophotography.com</a>)</span><br />
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<strong><span style="font-size: large;">Pictures from</span></strong></div>
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<strong><span style="color: #0b5394; font-size: x-large;">Sweatin' for Sammy</span></strong></div>
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<strong><span style="font-size: large;">2011</span></strong></div>
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-37657510651949086882012-04-04T22:13:00.000-07:002012-04-04T22:14:24.193-07:00Two DaysI can't believe it's almost time to go home. Four weeks is a long time to be away, and in some respects, I feel like we've been here forever...in others...like the time has flown by. <br />
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Here's some more progress from our little super star:<br />
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* Today, for the first time, she walked in a straight line by herself. Seems so simple. There's so much we take for granted. But for her, these are huge things. Sergio had her and she walked right to Aaron when prompted (about 6 ft. away). Sergio was thrilled. Me too!<br />
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* Hands and arms are still so much more relaxed.<br />
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* Her overall body is more relaxed. I can't believe it. I know there's still spunk in her, but she's so much calmer. <br />
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* ummmm, I had more things on my list, but I'm tired now and can't think. <br />
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I'm proud of her. They are small accomplishments, but also really BIG! I'm do have this fear that people won't see the change and think we are wasting our time, but then I remember that that's just lame. And I get over it. Just Thursday and Friday left. <br />
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-91351934601170329772012-03-27T20:47:00.003-07:002012-03-27T20:54:23.591-07:00Progress ReportYesterday, Sergio was so excited about Sammy's progress that he was giddy! Here's what's been going on:<br />
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* She can hold positions that she couldn't before: standing, half kneel on both sides, upright kneeling, and a 4-point crawl position. She can hold these positions, on her own, for 2 seconds. May not seem like a lot, but it's a big deal.<br />
* Samantha is beginning to really walk. Before, she used momentum to go forward. Now, she is starting to actually pick up her legs and move. It's cool to see.<br />
* She's much MUCH calmer. Both Bryan and my mom have commented on how much easier it is to hold her. Seriously, over the past 2 weeks, she has calmed WAY down. It's been almost strange to see. And it's not just that she's tired. It's different. I can't explain it. <br />
* For the first time, my mom saw Samantha pick up a Cheez-It one right after another, and put it in her mouth, instead of just swiping her hands around trying to pick food. She does it very well with her left hand and still struggles with her right hand (her tighter side)<br />
* She seems to direct her mouth to a spoon better when eating<br />
* We bought a new cup for her, and she is figuring it out. She isn't holding it yet, but she is drinking from it better.<br />
* Samantha does stand up more erect more often. When she's on the go, she'll bend over, but she will stand up straighter more often.<br />
* Her gait was a little slower at times today...has more control.<br />
* Sammy's arms are soooo much more relaxed. Look at those arms! This was on a walk on Sunday. The entire time, her arms were down. Now, this is the normal for her. Today in therapy, she was in the stander having a snack. She kept her right arm down the entire time and used her left hand! Wait a minute...I just realized something, that's a bigger deal than I first thought....<br />
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* Today, during her snack, her right arm was down by her side as she ate with her left hand. This was of her choosing. Instead of having to have both hands working at the same time (which is normally the case), they were working independently. Um, woa!<br />
* My mom was singing with her, and Samantha mimicked 3 sounds immediately after.<br />
* Overall, she is sleeping better! Hallelujah! (and knock on wood)<br />
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* Samantha is starting to pull up her pant leg ALL the time (eating it only this once). Is this the first sign of maybe one day being able to dress herself?<br />
* Today in the car, she took her shoe off. I have no idea how it happened. I heard the velcro, but she has never taken the shoe off. Again, I have no idea how it happened, but she got that shoe off! I call that progress (even if it's potentially annoying)<br />
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Way to go Sammy Sam Sam!<br />
<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com2tag:blogger.com,1999:blog-1617298245397958197.post-22435445976407749012012-03-22T10:38:00.002-07:002012-03-22T10:38:58.469-07:00Samantha's Doing GreatWow. This trip to Utah for therapy has been so much more than that!<br />
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1. Drive from California to Salt Lake City and stay with my friend for a week. She has her baby a bit sooner than planned.<br />
2. Come down to Provo.<br />
3. Marcus flies into town for the weekend because Samantha is invited to be the BYU Football Team's <b><a href="http://marcusandjenny.blogspot.com/2012/03/thursdays-hero.html">Thursday's Hero</a>! </b> Awesome<br />
4. Since we're here, we travel a bit to try some alternative therapy for Samantha and my mom.<br />
5. The Daily Universe (BYU's newspaper) comes to Now I Can to interview Tracey (founder) and interviews me about Samantha.<br />
6. Buy some doTerra oils and sign up to be a consultant and seller. If I sell some, great, but I signed up for the discount really. We'll see how they work for Samantha.<br />
7. Oh yeah, and we're here for therapy. Sheesh. We've been so busy.<br />
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I can't believe we're already approaching the end of week 2. I'm so glad we're here for 4 weeks. Here are some changes in Samantha that I've noticed since being in Utah.<br />
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* Samantha sleeps with her arms straight. She has never done that before, but many mornings, when I pull her in bed with me, she lays flat. Incredible actually since she is always so tight and curled up.<br />
* Though she is always pretty verbal (aka: loud), this wasn't a huge thing to me at first, but Sergio has said that she is more verbal with him during therapy than she's been in the past. They "talk" back and forth more. He said it seems more conversational.<br />
* The other night, she was crying. I went in to see what was wrong. She was saying "mommy." I've never heard her say Mommy. Mama, yes. Mommy, this is a first.<br />
* Overall, she is much calmer. It surprises my mom and stuns Sergio!<br />
* She can hold a static position longer. Before, she was unable to truly sit still in good form for more than 20 seconds. Now, she is holding some positions for over 30.<br />
* She is standing taller and straighter.<br />
* She is flat foot more often.<br />
* Her natural position is to have knees bent, tummy tight and tucked, slightly bent at hips, shoulders hunched, and arms bent. Anywhere she can fold in, she will. Those "bends" aren't as severe.<br />
* Her hands seem noticably more open and relaxed.<br />
* I sat in the back of the car with her the other day. She held my hand. Not, Sammy-I'm-going-to-hold-your-hand-and-you'll-like-it, but she sincerely held my hand when I reached over for her. She's never quite done it like this. <br />
* Today, during her snack, at least 90% of the time, she picked up the food she wanted and got it in her mouth! That is HUGE! Yesterday, I was watching her struggle and I sad and frustrated for her. Today, she was a new kid. Here's hoping that sticks! Nearly everything she went for, she picked up on the first try and got it in her mouth. That's either huge progress, or starvation is a bigger motivator!<br />
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com3tag:blogger.com,1999:blog-1617298245397958197.post-899863081749491412012-03-16T08:26:00.003-07:002012-03-16T21:12:39.619-07:00One YearYesterday, I met a new friend. I took Samantha and Callie to Rock
Canyon Park to play and relax before I went out with some friends.
Grandma and Grandpa would be putting them to bed, and I was trying to
assure that they would, indeed, be tired and go to bed -- the kids that is. While at the
park, I met Argie. She's a dear older woman with a heart of pure gold.
She then introduced me to her daughter-in-law. I was briefly told the
story of Julie's son, Brigham, and felt that there was a reason we met
that day. I felt uplifted by her tenderness, sincerity, and the
immediate connection with her ~ all of this needed after a rather tough
emotional week for me. <br />
<br />
We exchanged contact
information and this morning I spent some time reading about dear
Brigham Reneer online. I read an<a href="http://www.deseretnews.com/article/851357/6-year-old-wont-live-long-but-hes-brave--like-Tarzan-his-hero.html"> <b>article</b></a> in the Deseret News. I read
from <a href="http://argiehoskins.blogspot.com/"><b>Argie's</b> </a>blog. I read as much as I could because I was just falling in love with this boy's smile, courage, and Christ-like example. Truly. <br />
<br />
Death, itself, is not what hurts my heart. I
do not cry for those who pass on, but for those who remain and wait for
their reunion. It's the days, weeks, and months that follow that I
often think about. I think about the small moments when a parent passes their child's empty room. Or when that darn lost sock shows up in the laundry basket and sparks uncontrolled tears. <br />
<br />
At the one year mark of Brigham's
death, family friend's created a video. I watched it and was so touched
at how they explained the first year without their son. It is
beautiful and real. Painful and filled with hope and love. Charity.
Pure love.<br />
<br />
It has been over 2 years since Brigham passed away and Julie still teared up as she told me how hard it is to take care of our special needs kids, but when they're gone, we miss it...every little tough thing about it, we want it back. The Savior can heal our hearts. I have no doubt about that. But I also believe when you love so deeply like that, tears will still flow...even for an earthly lifetime. <br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="http://www.youtube.com/embed/oy_ZNvfSrPw" width="560"></iframe>Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0tag:blogger.com,1999:blog-1617298245397958197.post-25011878472703299922012-03-15T10:17:00.002-07:002012-03-15T10:17:34.660-07:00Reality CheckBeing a mom isn't what I could call "easy." And that's ok. I kind of knew that coming into the job. <br />
<br />
Being a mom. It's a tough job. <br />
<br />
And it gets even harder when you have to make all these decisions about therapies and treatments, surgeries and equipment. <br />
<br />
Today, I feel overwhelmed. Of course I want what's best for Samantha. Don't we all want what's best for our children? And yet, with these little ones who struggle to move, eat, or even breathe on their own, I want so much more for her...or maybe <i>less </i>depending on how you look at it. I've never had such a deep desire for every day things that we take for granted. All those simple tasks. Simple skills. Simple stuff. I want that for Sammy. I've never dreamed about my kids being the next president or famous engineer. But I never dreamed that I'd so deeply desire them to move "normally" or eat on their own either. <br />
<br />
I have felt on many occasions that there was so much potential within Samantha that just needed to be unlocked somehow. (Maybe I'm too focused on unlocking the wrong kind of potential ~ a thought that just occurred to me and that I'll have to think about more.) And so I research. I read. I search. I ask questions. I try to truly figure out what is best for Samantha. I mix and match what I think is working, or will work for her. Why? Because I really feel like those things will help her. Much of it is trial and error, and other times I feel divinely led. <br />
<br />
And in all that we do for her, I still feel discouraged and sad at times. The past week has been hard for me. I've had difficulty keeping my emotions in as I've watched Samantha around other kids. In the past, I had compared her. I don't do that so much anymore because to me, Samantha is her own little person, and all considered, I'm really ok with that. <br />
<br />
But during this week's time, we've played with cousins, friends, and strangers at the park. In all the situations, I've watched with joy as Callie played and had so much fun with them, while my heart broke watching Samantha wanting to play with them but couldn't. She kept going towards the kids, but they just pass her by. It's ok. I'm not saying that these kids should stop and play with her. I get that 100%. It just made me so sad to watch. And it made me even more sad when she'd cry because she wasn't playing with them. At first I didn't recognize it as that. But as soon as I relocated her to be near the other kids, she was happy. <br />
<br />
Samantha has always loved people and being around others. Aside from any other desire I have for her, my deepest desire is that others will love and want to be around her too.<br />
<br />
Here I am, doing all these therapies for her, feeling confused about what is best...liking bits and pieces of this, all of that, parts of something else and trying to figure out how to make them all mesh together and work for Samantha...and what tugs at my heart is ultimately how it will all play out in the end. Will all of this really help her achieve not just a more functional life, but a happy one as well.<br />
<br />
Being Samantha's mom sometimes is not easy. And I guess it never will be until my heart is separated from hers. But, I'll take it. Forever. <br />
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<br />Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com1tag:blogger.com,1999:blog-1617298245397958197.post-27090229838169784332012-03-13T10:53:00.001-07:002012-03-13T10:54:05.340-07:00BetterI was about to sit down and update Samantha's blog. It's been a while and I felt like it was time to post some new stuff. We are in Utah again for Samantha's therapy session at Now I Can. I wanted to talk about our trip out here and how she's doing today. But I've had very limited internet access since being here...and so I thought I'd take some time to catch up on blogs I follow.<br />
<br />
I wept as I read about <a href="http://winkfromheaven.blogspot.com/2012/03/our-last-day-part-3-of-3.html">Caleb's last 24 hours</a> with his family. I am not sure how a mother goes through that pain of losing their child, yet I know people do it every day. I have been so touched and strengthened through the pain and loss of people like <a href="http://winkfromheaven.blogspot.com/">April</a> and <a href="http://benjaminorton.blogspot.com/">Becky</a> and <a href="http://booferd.blogspot.com/">Erin</a>, and so many others. It sounds so selfish and horrible, actually, but it's true. During these painful yet sacred moments, as these valient women, who I consider my friends, walk through their own Gethsemanes and then truthfully share their raw feelings, they radiate their faith, testimony, and pure love. There is no doubt in my mind that the Spirit is nearby, that their children are nearby, that angels are surrounding them, and that the Savior knows their pain.<br />
<br />
I am forever changed, and a better person, for knowing these mothers, families, and these angelic children. My heart aches and I weep, sometimes sob, thinking about their loss, but they make me a better person.<br />
<br />
So, I will update later, and I for now, I'll let their words and spirits simmer in my heart as I continue to daily pray for them.Jennyhttp://www.blogger.com/profile/13101399559614616079noreply@blogger.com0