tag:blogger.com,1999:blog-124383362024-03-07T16:40:00.712-08:00A Peeko At Niko: Williams SyndromeA chronicle of discovering and coming to terms with my baby being diagnosed with Williams Syndrome.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.comBlogger310125tag:blogger.com,1999:blog-12438336.post-72289464721876930002012-09-07T21:27:00.002-07:002012-09-07T21:27:59.149-07:00Announcing My First Book: BEAUTIFUL SORROWS Oh, my friends! My loves! The day that I was waiting for is finally
here! I’m absolutely delighted to announce that my first book, a short
story collection titled <i>Beautiful Sorrows</i>, will be out next
month! If only you knew how excited I am. Maybe you could think back
to your first book, or dream ahead to it, and then you’d know. I can’t
stop smiling.<br />
Shock Totem Publications is putting it out, and I’m astounded at how much work and care they’ve put into this. It’s humbling.<br />
Please read the official announcement <a href="http://www.shocktotem.com/08/08/2012/announcing-beautiful-sorrows/">here!</a> And check out the beautiful cover art. I think it’s perfect. Have a great day!<br />
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<img alt="" class="aligncenter" height="526" src="http://i537.photobucket.com/albums/ff338/ShockTotem/BeautifulSorrows.jpg" width="344" /><br />
<br />Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com47tag:blogger.com,1999:blog-12438336.post-76498103964305913562012-06-02T20:23:00.001-07:002012-06-02T20:23:44.282-07:00Is Strapping The Boy Down Really The Answer? Apparently So.This is my kidlet. He’s nine, he’s frickin’ adorable, he has Williams Syndrome, and he’s unruly on the bus. He just can’t sit <em>still. </em>Last
year the bus had an aide and that was all that was needed, but this
year transportation has gone completely insane. The budget cuts are
astronomical. It’s impossible to get an aide for him; I know because we
asked. Repeatedly. We were trying to avoid the <a href="http://abrokenlaptop.com/2011/11/16/so-the-police-show-up-with-my-eight-year-old-son/">“Hello, Mama, the police brought me home!” thing </a>again.<br />
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This is the answer: A weight vest.<br />
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<a href="http://abrokenlaptop.files.wordpress.com/2012/03/harness1.jpg"><img alt="" class="aligncenter size-medium wp-image-3866" height="300" src="http://abrokenlaptop.files.wordpress.com/2012/03/harness1.jpg?w=225&h=300" title="harness" width="225" /></a><br />
<br />
At least, it’s what they <em>call</em> a weight vest, because that
definitely isn’t what this is. A weight vest is, of course, a vest that
is weighted. It can be specially made, or it can be a fishing vest
with beanbags in the pockets. The idea is that the extra weight will
make the child feel secure. And it works, because Niko has used
weight vests for years and did very well with them. This, however, is a
harness.<br />
<br />
<a href="http://abrokenlaptop.files.wordpress.com/2012/03/harness.jpg"><img alt="" class="aligncenter size-medium wp-image-3867" height="300" src="http://abrokenlaptop.files.wordpress.com/2012/03/harness.jpg?w=225&h=300" title="harness" width="225" /></a><br />
<br />
The metal hoops on his shoulders clip to an apparatus that is
securely fastened to the bus seat. There are metal hoops on each skinny
hip, as well. It zips up the back and buckles between his legs like a
parachute harness.<br />
<br />
Oh, he hated it at first! How he screamed! It was absolutely
heartbreaking. As time went on, he became more used to it. I’m trying
to do the same. It’s very nice to know that he’s secure in his seat and
that he won’t be running pell mell on the bus, and it’s especially nice
to know that the next knock on the door won’t be Las Vegas Metro
handing over my little one. It’s still very difficult to physically
strap him down every morning. But that’s life, yes? Take the bad and
celebrate the good. At least my son is so gosh darn charming!<br />
<br />
*<strong>UPDATE*</strong> I wrote this post a long time ago (hence
the coat. It’s a bazillion frickin’ degrees outside right now! A coat?
No way!) and we’ve had time to adjust to the harness. It no longer
frightens him, and he actually seems to feel very secure wearing it. It
took a few months to get to the point that we’re at now, but with
consistency and adding it to his daily routine (“Go potty, wash your
hands, and then we put on the harness!” we’re at a great place with it.
I’m glad we have it, especially since he’s been watching youtube videos
on learning how to drive school buses. Dodged that bullet!Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com7tag:blogger.com,1999:blog-12438336.post-73008248231834214032012-02-05T22:28:00.000-08:002012-02-05T22:29:37.304-08:00Let It Fall: A Chapter<span class="messageBody" data-ft="{"type":3}">Some of you know that I'm working on a memoir about Niko and our journey with Williams. Jay Faulkner was kind enough to let me share a chapter of it on his blog. This is chapter three and it has to do with how we reacted at the time of dignosis. Won't you please read it? And if you have the time, will you tell me what you thought? The memoir is on the back burner at the moment because I was a little too close to it, but I may be ready to start again.<br /> <br /> <a href="http://jayfaulkner.com/blog/archives/466" rel="nofollow nofollow" target="_blank">http://jayfaulkner.com/blog/archives/466</a></span>Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com7tag:blogger.com,1999:blog-12438336.post-16441966040686397792011-12-21T05:23:00.000-08:002011-12-21T05:23:43.018-08:00The Shootout at OK Corral<div class="separator" style="clear: both; text-align: center;">
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<br />
I have to tell you, dear ones, that I have never stalked into a meeting so ready to fight, and then...I found that I didn't need to.<br />
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Niko's IEP meeting was on a ridiculously tight schedule. We had about an hour to complete the entire thing, so I basically walked in and said, "We feel that this isn't the right placement for Niko. Although wary about the autism placement, it's preferable to here. We'll reassess again at the end of the school year. Enough of that. Let's talk about the abuse allegations that I'm hearing about."<br />
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Their jaws dropped. DROPPED. They were absolutely horrified. We looked at their faces and realized that they genuinely didn't have anything to do with it. I shared the information that I had, told them who I was warned about, and demanded that the earlier abuse allegations be documented and put into his folder immediately. They did so while we watched. And then there was smiling. They held sweet Lil' Lil. We talked about how amazing Niko's speech is coming along, and how best to control his extreme anxiety, and how much he wants to please us. We discussed his mind-boggling aggressive behavior at school (kicking, hitting, singling out victims) and how that behavior was nonexistent at home. When they gave him his own floater aid, the violence dropped to nearly nothing. He had 17 kids in his class, and it was too much.<br />
<br />
The autistic placement turned out to be a godsend. It wasn't right for him before, and we made the best choice at the time, but right now he is thriving. It's delightful to receive notes from his teacher saying, "Did you know that he knows his colors?" She constantly tells me how well he responds to ABA therapy. She uses words like "delighted" and "amazed" and "impressed". There was a bus snafu (okay, so there were many) and his teacher swooped in, fiercely protective of him, even though he has only been in her class for a few weeks. She's truly playing for Team Niko.<br />
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He's happy. He comes home humming new songs that I'm not familiar with. He asks to go to New School. He's himself again.<br />
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I couldn't be more pleased.<br />
<br />Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com8tag:blogger.com,1999:blog-12438336.post-48596192799567634852011-11-01T06:18:00.000-07:002011-11-01T06:18:45.540-07:00BattleSo Niko hates school. I know, right? He's usually wild about school. Mad about school. Last year he loved his teacher, loved the bus, loved his homework. This year he cries. Suddenly I hear that he's aggressive. Each morning he begs, "Mama home?" and wails while I put his clothes on.<br />
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You know me. You know where my mind goes. As soon as I heard that he was assigned to the same school where he was "allegedly" abused before, I stood my ground until he was switched to a different school. YAY! But he's regressing in potty training, even at the new place. He's changing.<br />
<br />
We have an emergency IEP meeting scheduled for tomorrow. They, once again, feel like he would do better in an autistic placement. I'm not certain how I feel about that placement, but I know for sure that he is NOT thriving where he is now. But I was just pulled aside and informed that I should "check Niko for marks". That two kids in the special ed department from his new school have pulled their kids out.<br />
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Nobody should have to check their kids for marks as soon as they step off the bus.<br />
<br />
The meeting is tomorrow. My husband took work off so we can attend together. It isn't going to be how it was last time. I'm not going to weep and cry and shudder to the ground. I'm going to dismantle everything if I have to. Scream the walls down. Call the media. Carry a fiery sword and defend our children.<br />
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I also found out that the schools have no record of the abuse that went on before. They have record that they suggested an autistic classroom for my non-autistic son and I stubbornly refused, but no record that an earlier teacher put her hands on him. Repeatedly. With witnesses that refused to speak up when interviewed later. This will change. All of this will change. This is mostly because I have changed. I'm not going to be intimidated anymore. I'm going to look this broken system in the eye and say, "I'm stronger than you."Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com4tag:blogger.com,1999:blog-12438336.post-75980265658984942832011-07-31T18:56:00.000-07:002011-07-31T18:56:14.600-07:00Oh my goodness, have I really not updated since MARCH? I don't even know what to say. Life was busy, I guess. I updated the other blog more regularly. I've been happy and sad and stunned and baffled. Let's make a long story short, shall we?<br />
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I was on bed rest for about three months. The twins came as a very sudden surprise and were born about eight weeks early. We named them and held sweet Seija in our arms while she passed. She lived about five hours. Lilia is still in NICU and has been there for about six weeks. She's having difficulties with her heart and with breathing, but she's absolutely beautiful and a joy. I'm having difficulty with being the mother of five children but only three are alive, and one hasn't even been able to see sunshine yet. There are good days and bad days. <br />
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Some of you know that Niko was "allegedly" abused by his special education kindergarten teacher. There was a slapdash investigation by the school district and the teacher had to take a class on Williams Syndrome. She still teaches there. I was not satisfied with the outcome, but was too heartsick and naive to do any better than I did at the time. (If you want to read about that situation, it starts <a href="http://williamssyndrome.blogspot.com/2008/07/quick-hide-your-axe-i-could-use-it.html">here.</a> Seriously, I read it and felt nothing but sympathy and sorrow for sweet, befuddled me.) I received a letter saying that Niko was assigned to that same school for this school year. I can't believe that even happened. I get to call them tomorrow and tell them in no uncertain terms that my son will NOT be going back to that school for any reason, and to change his assignment immediately. I'm filled with equal parts rage and sorrow, but I realize that I'm much stronger than I was just a few years ago. He is my son, and he's beautiful, and he deserves so much more than he's being given. He isn't an afterthought, and I'm not afraid to stand my ground. Wish us luck.<br />
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It's cliche but I truly believe that it's darkest before the dawn. In my experience, you have to go through all of this awful stuff, and then something absolutely amazing happens. I'm expecting it. :)Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com5tag:blogger.com,1999:blog-12438336.post-47628191493823379232011-03-19T13:37:00.000-07:002011-03-19T13:37:03.952-07:00Finally, Good Baby News!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5dBovl2yVPQLn7N84ND-7ORF7UOUt_t0ST3Q-WNs3WtICDyxCrxK0tR8oXvdjwWlVh89M8im6A6Q8GgD_SEvCKwU88TzOaJJbf_9jwVFFYJyAr4QPI9BRm7JftLBTBUOv_l6yLQ/s1600/rejoice.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5dBovl2yVPQLn7N84ND-7ORF7UOUt_t0ST3Q-WNs3WtICDyxCrxK0tR8oXvdjwWlVh89M8im6A6Q8GgD_SEvCKwU88TzOaJJbf_9jwVFFYJyAr4QPI9BRm7JftLBTBUOv_l6yLQ/s320/rejoice.jpg" width="296" /></a></div><br />
Every time I go to the doctor, the news has been bad. One of the triplets died. One will most certainly die. When the second one passes, it could very well take the third with it.<br />
<br />
Well, enough of that! Today we received wonderful news. Although sicky baby will almost certainly pass away soon after birth, for the first time we’re looking with optimism toward meeting her. The doctor was surprised at how well she was doing. “Delighted” was the word that he used, and I’m delighted as well. She’s doing so well that there isn’t a reason not to expect her to survive until birth. The other baby is doing extremely well, also. Hooray! Now I can definitely spend the day writing with a lighter heart.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com14tag:blogger.com,1999:blog-12438336.post-28205315733614248182011-03-01T18:04:00.000-08:002011-03-01T18:04:02.598-08:00Incompatible With Life<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiitpKqN1Kx6tUsYcjUbeY1MAnmyB_31bjSBw08vw9juwc-MG-8rbQxTI7aL-itDnH9GT_CKvWwcw3nmzSJgTe8C_qTNL8TEB7X8XPPAb7dWom1rPeZ6AivDjWmTzaO9-MX238yTA/s1600/fallingstars.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" l6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiitpKqN1Kx6tUsYcjUbeY1MAnmyB_31bjSBw08vw9juwc-MG-8rbQxTI7aL-itDnH9GT_CKvWwcw3nmzSJgTe8C_qTNL8TEB7X8XPPAb7dWom1rPeZ6AivDjWmTzaO9-MX238yTA/s1600/fallingstars.jpg" /></a></div><br />
We learned that while one baby continues to develop normally, the other one has been diagnosed with alobar holoprosencephaly. This is what ultimately led to the demise of the first triplet. We just learned that it will most certainly lead to the demise of the second. My sweet girl (they’re all girls! Yay!) has severe intracranial and facial deformities that leave her “incompatible with life”. What a strange phrase. It makes my mind go in so many different directions. It’s intriguing in it’s starkness. While the news was tough to swallow, I’m still very proud of her. She’s such a fighter, and while my ultimate goal is to hold this sweet little one alongside her sister for a few minutes in this life, I’m prepared in case it doesn’t happen. Prepare for the worst and hope for the best. It has become our family motto over the past few years, and I have never regretted doing just that.<br />
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As you can perhaps imagine, I’ve struggled with writing for the past month. It’s difficult to focus on a project when my mind keeps wandering away to other things. Suddenly my priorities have become very clear, and it’s remarkably refreshing. I unplugged the phone. I stepped back from activities that take me from my family. I’ve learned how to say no when no must be said.<br />
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I also realized that writing is how I cope. As I’m contemplating our changing family, and our changing expectations and dreams, I discovered that I was thinking of this whole situation in essay form. I was carefully choosing my words in my head, trying to find the right phrase so I could accurately express what I’m feeling. “I’m sad,” doesn’t cut it. But the essay I wrote in my mind, the one about the conflicting emotions that come with looking at new strollers for one child while looking at infant caskets for the other…well, that is how I think. It’s how my brain works. I find much more comfort in that than I do in anything else. When I put the words down, it is neat and clear and lines up nicely. It swirls in my brain, but it makes sense on paper. It’s a comfort, and it’s a joy.<br />
<br />
I hope that you can read this essay one day. While it’s sometimes difficult to accept the road that life sometimes takes us on, there is always happiness among the sorrow. How truly fortunate are we that we were not only blessed with one, but three children? Losing one was terribly difficult, and losing two will be worse. But how wonderful is it that there is a third, this miracle baby who is completely untouched by the anomaly that felled her sisters? I’m very aware of how there is beauty and joy amid the sorrow and loss. <br />
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I typed the words “incompatible with life” into my search engine. I was astounded by how many hits came up, how many pictures and stories. That, too, was comforting. Sometimes it seems that we’re the only ones going through whatever situation it might be, but I’m learning that is never the case. There is an army of us out there.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com7tag:blogger.com,1999:blog-12438336.post-13265682813244676882011-01-17T15:15:00.000-08:002011-01-17T15:15:16.662-08:00Why Am I Thinking Of The Rolling Stones?At a time when my heart is breaking?<br />
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We were calling the triplets Winkin, Blinken, and Nod, but discovered today that Nod has passed away. It’s funny how you can become so attached to somebody that you haven’t met, but that’s the way of it. While I mourn for the child that we almost had, we’re still excited that we have what seem to be two very energetic twins, and that’s a blessing.<br />
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I do believe that things happen for a reason, even if it’s only to teach us strength and empathy. I wish that this wasn’t a lesson that I needed to learn, but that’s where the Stones come in. You can’t always get what you want. I just need to focus on the rest of those uplifting lyrics, and remember how much I believe in hope.<br />
<br />
Thank you for your kindness concerning all of this. I’ve been a bit overwhelmed for a few weeks and haven’t been able to respond as personally as I would like to, but please know that you’re very appreciated.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com7tag:blogger.com,1999:blog-12438336.post-1382064305638409482011-01-10T19:42:00.000-08:002011-01-10T19:42:03.793-08:00Surprise!I wrote a post a few weeks ago celebrating our tenth wedding anniversary. I’d been feeling a bit unwell lately, so imagine my darling husband’s surprise when, after our anniversary dinner, I shouted “SURPRISE!” and announced that I’d just discovered that we were having our third child. How wonderful! How unexpected! A surprise indeed.<br />
<br />
Then we were robbed ten days later. SURPRISE!<br />
<br />
Today’s surprise took place at the first ultrasound. My dear friends, I am not exaggerating in the least when I tell you that my breath was taken away. We saw the baby for the first time. Then, SURPRISE! There’s another baby! Twins! We’re having twins! I couldn’t believe it. Can you believe it?<br />
<br />
But since we never do anything halfway, SURPRISE, SURPRISE, there are actually three babies. That’s right. Triplets. Suddenly we will go from two kids to five. I can’t wrap my head around it, yet. Although excited, I don’t think that my heart can take any more surprises. At least for another day or two. <br />
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So let me reel for a while. And then we party! Celebrate with me!Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com14tag:blogger.com,1999:blog-12438336.post-74804300521771590862010-12-15T09:02:00.000-08:002010-12-15T09:02:30.351-08:00The Best Part About Marrying Young......is that you get to grow up together.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://abrokenlaptop.files.wordpress.com/2010/12/family-pics-by-rachel-093.jpg?w=200&h=300" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" n4="true" src="http://abrokenlaptop.files.wordpress.com/2010/12/family-pics-by-rachel-093.jpg?w=200&h=300" /></a></div><br />
<br />
We met when I was barely 20 years old. He was 21, and had been back in America for two weeks after living in the Baltics for the last couple of years. He spoke Russian and sometimes had to search in order to find the correct word in English.<br />
<br />
I fell in love with him the night that I was ranting about the injustices in the world and he said, "We always need someone to fight the losing battles." We were married when I was 21 and he was 22. Nine months into our marriage, 9/11 happened. That same day, I had my first cancer scare.<br />
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We moved to Seattle, had a baby, and then moved to Finland. We moved back home and found out that our baby had a rare genetic syndrome and might not survive. I was 24. He was 25.<br />
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I lost my wedding ring and cried for five years. He never once got angry about it. He was just sad that I was so upset.<br />
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He got a very cool, super mysterious job and we moved to Vegas. We had a baby girl. I started getting published. He was promoted. He sings to our kids in Russian, does magical things to make our backyard a children's wonderland, and he's just as sexy in a suit and tie as he is in ripped jeans. And I love the ripped jeans.<br />
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For our tenth anniversary, we planned to go cage-diving with great white sharks in Africa. We've been planning it for years. Instead, we drained our savings on medical procedures, ballet, and speech therapies. Our previously nonverbal seven-year old son just said, "I want toast, please." Our daughter danced as Clara in the "Nutcracker" yesterday. My husband took an hour off of work in order to see her. Tonight we're going to stay home and watch a movie instead of going diving with sharks. It's absolutely worth it.<br />
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I have a new ring. I finally accepted that I'll never find the old one after moving five times. I love my husband more now than I did when we were first married, and I was pretty head over heels then. We all know the responsibilities of marriage. The hardships. The frustrations and the joint decision making and the bills. Nobody ever mentions that marriage is like a slumber party that continues on forever and ever. There's dancing in the kitchen. Throwing a pillow at somebody and knowing they'll laugh every time. Knowing that when you call him, his cell phone starts playing "Girlfriend in a Coma" and nobody understands why we both think that's so funny.<br />
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Today is our ten year anniversary. I've never been so happy! And I still feel like we're children.<br />
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*By the way, the picture was taken by our friend Rachel Miller. She's fantastic at everything that she does. Thank you, Rachel!Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com11tag:blogger.com,1999:blog-12438336.post-26269659272688965202010-12-07T17:34:00.000-08:002010-12-07T17:34:59.005-08:00Nina the Ballerina<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvDzeBpYH4ghrSI6fNpXnLZjBi5b6X3brzhfEcMnRFWBVcAqu6lToQpkgdOObO9gaO8Tan8JiSR75sdT5Iih9OXmieB02NAP-UeJldPa3l5IDrOMfDdtdtmZ1kX8xoDuy6WxKftA/s1600/San+Fran+028.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvDzeBpYH4ghrSI6fNpXnLZjBi5b6X3brzhfEcMnRFWBVcAqu6lToQpkgdOObO9gaO8Tan8JiSR75sdT5Iih9OXmieB02NAP-UeJldPa3l5IDrOMfDdtdtmZ1kX8xoDuy6WxKftA/s320/San+Fran+028.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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I lose a lot of sleep worrying about Nina. I feel like so much of our life revolves around Niko and his needs. We don't go to loud places because it disturbs him. We don't go to restaurants because he can't sit still for that long. Twice a week I pack up the kids and we travel for a three hour round trip therapy session. While Niko is in with his speech therapist, Nina and I talk and sing. We play games. We put together puzzles and it's our special time. I was delighted to find out that Nina thinks therapy time is for her. But still, is she being pushed to the sidelines?<br />
<br />
We started her in ballet. She loves it! If you ask her about ballet, her face lights up. She tells complete strangers that she spins and then falls down. She works on technique for the first half of the class, and then they read a story and dress up for the second half. The best part? Not even Mommy is allowed inside. Once they step through the special Fairy Door (a tiny little girl sized door) it's all about them. Parents stay outside and watch through a window until it's time to come in and take pictures.<br />
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It's all about Nina. It's only for her. I don't think I've ever seen her so happy.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com6tag:blogger.com,1999:blog-12438336.post-61665051255047051702010-10-26T17:30:00.000-07:002010-10-26T17:30:46.693-07:00Reading For A PodcastMy friend RB Wood invited me to read some of my work on The Word Count Podcast. I'm reading a short essay about being a writer, and the day that I got a call from Niko's school saying that he needed to go to the hospital when, in fact, he only had a dirty diaper. Egads. This essay has been published on my writing blog before.<br />
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Anyway! You can download the podcast for free <a href="http://itunes.apple.com/us/podcast/the-word-count/id392550989">here</a>. It's podcast #1 and is titled A Double Feature. While the podcast does contain explicit content on it from other writers, my piece is clean. I begin at around the ten minute mark. Won't you listen? :DMercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com21tag:blogger.com,1999:blog-12438336.post-46282276226701061362010-10-06T10:04:00.000-07:002010-10-06T10:04:01.501-07:00RecommittingI had an epiphany the other day. I realized that I never spend time here. I keep up with people via Facebook, or I'm always on the other blog. I miss this place. In fact, I wrote a blog post titled "Something Humbling" on my writing blog, which is <a href="http://www.abrokenlaptop.com/">http://www.abrokenlaptop.com/</a>. I'm going to repost that here for you. I feel very strongly about being more active on this blog, and also about inviting my writing friends over to experience this section of my life, if they so desire. They're so kind and supportive; they're like a second family. Just like you guys. So! This is what I posted a week ago at my writing site:<br />
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I’ve been a blogger since 2005. I wasn’t blogging about the wonderful world of writing; I was writing about my son. He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that. Few had seen the syndrome before. We were alone. I started my blog at www.williamssyndrome.blogspot.com because I was standing atop my raft and I was screaming for somebody to hear me. More than that, I knew the feeling of absolute isolation. If only one person stumbles across my experience and it helps them in any way, then that is what I want. I would have sold my soul to read somebody’s blog when our diagnosis hit. <br />
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The Williams blog is a much more honest blog than this one can ever be. “Blah, I got a rejection!” is far less visceral than, “My son is dying today.” The Williams blog is a blog of happiness and even more so of pain. I updated religiously for about three years until somebody said, “Hey, I found your blog. My child has Williams, too.” Somebody finally heard the screaming.<br />
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I started this blog in 2008. I kept updating my other blog as well, because there was a lot to say. Then I gradually started spending more time here. I apologised for my long absences on the Williams blog, and I urged them to come here if they wanted to keep their finger on my pulse. Why? Because this is my safe, happy place. Because sometimes it’s too hard to write about the struggles that we’re going through, and also because I’m embarrassed. I’m embarrassed that I can’t always be strong. I’m ashamed that things in the Williams World have temporarily broken me to the point where I didn’t know if I would ever be able to stand up again. But look, I’m standing. We all are.<br />
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I received an email the other day. A mother told me that my blog was her introduction to Williams Syndrome when her child was diagnosed. She said that she read my blog start to finish. She was my one person, the one I wrote it for. But the very next day, another mother told me about when she started reading my blog. I had written about looking for a park with few children so they wouldn’t tease my son as he played. She said she sat at her computer screen and cried, because she did the same thing.<br />
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This humbled me. Greatly. These women are some of the strongest that I have ever met. It’s humbling to hear that some of the tiny things that I said affected them. I know that these women have greatly affected me.<br />
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My Williams blog updates have become extremely sporadic. I keep in touch with most of these women via Facebook. I cry privately to my friends instead of crying publicly on the blog. I spend more time here, in my whimsical little writing world, because it’s easier, quite frankly. I love the joys and challenges of writing. And compared to genetic testing and seven years of potty training before it finally took hold (Hooray, it finally took hold!) writing challenges are a breeze. And the best news is that my son is doing so extremely well lately that I simply choose to enjoy it instead of writing about it.<br />
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I’m realizing, though, that simply because our life is taking a delightful turn for the better, that doesn’t mean that other people aren’t still struggling. It had never occurred to me that I was being selfish by not keeping up the Williams blog, but I realize it’s true. When you child is diagnosed with something scary and seemingly insurmountable, you scour the universe looking for hope. My son is speaking. He’s holding a crayon. Today he washed his own face. There was a time that we didn’t know if that would ever be possible. These are things that I need to write about.<br />
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I’m going to recommit to my other blog. I’m telling you this here because…I’m not sure why. Perhaps you’ll be hearing from me less. Maybe you won’t. I need to figure out how to balance life, family, Shock Totem, writing, and two separate blogs. We’ll see how it goes. But I wanted to let you know that you feel like family. And if you ever want to pop over to the Williams blog, you are definitely invited. Come over and play.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com4tag:blogger.com,1999:blog-12438336.post-43176361490389275272010-08-04T16:20:00.000-07:002010-08-04T16:20:35.111-07:00The Magic Switch Has FlippedOh, my dear friends! I have so much to tell you! You know how the negative just piles on, and it becomes harder and harder until you think that your back will break under the weight of it? You think about given up until you finally stand up and shout, "Bring it on, Universe! I can take ya?" And then suddenly the clouds part and all of these magical wonders fall from the sky. It's a direct reward for surviving, I think. Let me tell you about the rewards that we're enjoying. <br />
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The most important is that Niko's magic switch has flipped. I attribute a lot of this to his school teacher this year (who, unfortunately, isn't going to be there next year) but I attribute it even more to his summer school teacher. To recap, Niko has had a terrible time at school, and especially summer school. Last year we learned that he had cried all day every day, and the teacher had set him aside to focus on the kids who behaved better. We didn't even know he had a problem until his report card came. But this year? A woman from my church walks up to me and says, "Hey, I'm Niko's teacher this summer!" I couldn't believe it. Somebody who knew him and his needs was going to be his teacher?! It was a direct answer to my prayers. She and the other teachers were so wonderful! Niko was excited to go to school and he came home just beaming. They reinforced everything that we were teaching him at home, and what's more, they made a big push for potty training with us. NIKO IS POTTY TRAINED!! I didn't ever see this day coming, and it's so delightful! Lots of high fives and smiles all around, I have to tell you. His language is getting better and better. He can say things like, "Hi Mama," "apple", "water", "I love you", "Daddy", "cheese" (for cheese crackers) and "Nina". They're not spot on, but they're consistent and we treat them as words. Can you imagine the relief that all of us feel now that he can ask for a drink of water when he's thirsty?<br />
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Also, we took him to the hospital for his sedated heart echo, which was much better than the <a href="http://williamssyndrome.blogspot.com/2009/05/this-is-exactly-why-we-hate-hospitals.html">nightmare that I posted about last year.</a> Niko's care was wonderful, and his heart looked so fantastic that we don't have to come back for two years! I am not afraid to admit that my eyes were tearing up as I hugged the cardiologist. <br />
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Next: my writing. Oh my goodness, it couldn't be going any better! I have finally found a wonderful agent who hit the ground running before the ink on our contract even dried. I announced my happy agent news a week ago today on <a href="http://abrokenlaptop.wordpress.com/2010/07/28/aaaaaeeeeeeeiiiiiiiiiii-and-a-giveaway/">A Broken Laptop</a>, and I am so excited! For those of you who are curious as to the process, I now send the agent my completed manuscript and he uses his connections to send it to publishing houses. That means that A) I don't have to spend the time researching and sending it to people who most likely won't look at it without an agent anyway and B) I get to use this new-found time to work on a new manuscript. This opens doors for me that wouldn't be opened any other way, and I'm simply thrilled.<br />
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Also! I'm going to a writer's conference in Las Vegas called KillerCon, and I am going to be on two panels there! That means I'll sit on stage with a handful of other writers and answer questions that the audience asks. I'm quite humbled and excited to be there. It's a privelage. <br />
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The magazine just reopened to submissions so I'm quite busy with that. It's my husband's busy season, so I took the kids and fled to my parent's house for two weeks. Vegas is too hot and Nina's seizures started up again, so we bolted. We see her neurologist in a few weeks. It can't come too soon. Nina is so sweet that I think she's made of sugar, sometimes. When she isn't made of spice. She's everything that I always wanted in a daughter. Today my mother gave her a doll for her birthday, and she immediately named her Bird. Life is pretty sweet for us. :)Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com10tag:blogger.com,1999:blog-12438336.post-42742155880302350772010-06-21T14:11:00.000-07:002010-06-21T14:11:49.489-07:00Writing Time! And Niko's Book! And The Anthology!My father is down visiting for a day. He took Niko to speech therapy, and when Nina bounced around (in her pink tutu) and said, "Imma come too!" he took her as well. He's giving me two and a half hours of unanticipated writing time. I am so wonderfully grateful! I will have another chapter finished in my Williams book by the time he returns, and that makes me very happy.<br />
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Today is the first day that I really sat and read through what I had written so far. I'm struck again and again by what an amazing journey it has been, and will continue to be. Niko has come so far, and I'm very proud of him. In fact, I'm very proud of all of us.<br />
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In other news, I was able to officially announce that SUPER SPECIAL AWESOME anthology that is coming out in October! It has an absolutely amazing list of authors that I'm delighted and awed to share a table of contents with. (Anybody ever hear of True Blood? Coraline? Fight Club?!) I am so humbled. Come see the book cover and the Table of Contents <a href="http://abrokenlaptop.wordpress.com/2010/06/17/heaven-is-full-of-writers-and-werewolves/">here.</a> I can't tell you how thrilled I am! :DMercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com1tag:blogger.com,1999:blog-12438336.post-79605139027994569322010-05-03T22:56:00.000-07:002010-05-03T22:56:45.674-07:00Ai yi yi.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_juD8Up1FXXLqQkvR1xZVH7s_M7eyZBNJSDY714U7ggV6Rax7TpR7XdCnm7xBwcRgQKisKpDF1mR7G0yWH4VcIW-Galwiznrb5oO3fGHhtpodiNukxhmSt2SNxPlLo3oWF08-fg/s1600/Hurt+Niko+016.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_juD8Up1FXXLqQkvR1xZVH7s_M7eyZBNJSDY714U7ggV6Rax7TpR7XdCnm7xBwcRgQKisKpDF1mR7G0yWH4VcIW-Galwiznrb5oO3fGHhtpodiNukxhmSt2SNxPlLo3oWF08-fg/s320/Hurt+Niko+016.JPG" tt="true" width="320" /></a></div><br />
So I gotta tell ya what happened this week.<br />
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It was a lovely day at church where Small Son inadvertently put his hand through the window. It cut his wrist horribly, barely missing the artery. When I took a good look at it, I pretty much hit the floor. While I claim that I was always fully conscious, at least a little bit, this has been disputed by those present. And apparently I wasn’t the only one who fainted when I saw it, either, although I was busy seeing stars and can’t confirm it. Go, me.<br />
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But he’s stitched, he’s happy, life goes on and Tiny Daughter now insists on wearing a bandage on her wrist, too. In fact, she insists that the entire family wears them as a reward after cleaning and changing Small Son’s bandages, so for at least half an hour a night we look like the Yardley Suicide Club. It’s grisly, but black humor is pulling us through. <br />
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What’s even more ironic is that the night before this happened, my mom said, “If I didn’t see the weird things that constantly happen in your life, I wouldn’t believe it. Your life is a comic strip.”<br />
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Yes, yes it is.<br />
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So I took a little time off and spent it appreciating my wonderful family. Now I’m ready to get back into the writing grind, and I no longer start sobbing whenever somebody says, “Hey, at least now you have another chapter for your Williams Syndrome book!” Rock on.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com5tag:blogger.com,1999:blog-12438336.post-13486476017265232402010-02-24T06:43:00.000-08:002010-02-24T06:43:05.418-08:00Mommy's Little Pwincess<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNMYLiKiHJgxy8RhBTHbzLca8AmCQ7iFUERdVUS5fjSGSiRwYV1Hf9LEcCKxuHALRq4g2Ir5OPkGNcXKk1in6hiZl338R6dMI0bLucQgKyFQgzNmtv9h7HNFPZX0NrPdCzFLuBYw/s1600-h/Home%20047.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNMYLiKiHJgxy8RhBTHbzLca8AmCQ7iFUERdVUS5fjSGSiRwYV1Hf9LEcCKxuHALRq4g2Ir5OPkGNcXKk1in6hiZl338R6dMI0bLucQgKyFQgzNmtv9h7HNFPZX0NrPdCzFLuBYw/s320/Home%20047.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">We can't seem to shake these colds. We had to reschedule Niko's first private speech therapy appointment because they have a strict sick policy. I spent almost all day yesterday holding Nina in my arms and watching Disney's Cinderella on Youtube. "Pwincess?" she asked me tearfully. "Pwincess?" She wore her pink princess pajamas and cried into her star blanket. I think my heart burst from loving her so much.</div>Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com4tag:blogger.com,1999:blog-12438336.post-59176978688660554212010-02-22T16:20:00.000-08:002010-02-22T16:20:55.862-08:00A Happy Announcement!Thank you to everybody that encourages my writing. Sometimes I feel like I'm being selfish by doing something that I love so much, and I appreciate you for reminding me that I can't take care of anybody else if I'm completely depleted.<br />
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I announce the biggest sale of my career thus far<a href="http://abrokenlaptop.wordpress.com/2010/02/22/yeehaw-baby"> <strong>here.</strong></a>Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com1tag:blogger.com,1999:blog-12438336.post-32131463013439642402010-02-13T19:19:00.000-08:002010-02-13T19:19:29.101-08:00New Things!Niko learned how to blow into the musical recorder today. The mind boggles. Within two weeks, this child has learned how to suck through a straw and blow into a recorder. Oh! And climb our climbing wall! Something has switched on inside of our child. :)<br />
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And I talk about my writing life <a href="http://abrokenlaptop.wordpress.com/2010/02/13/where-have-i-been/"><strong>here.</strong></a> Good (secret-ish) news, and I officially announce that I started the Williams Syndrome book. I'm hoping to have the first three chapters finished by Tuesday. This definitely feels like the project that I should be working on at the moment. It feels really good.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com4tag:blogger.com,1999:blog-12438336.post-34966332284952801842010-02-10T18:45:00.000-08:002010-02-10T18:45:50.830-08:00The Neverending PaperworkNiko was supposed to have his two hour speech evaluation tomorrow, but he (surprise!) came down with a cold. I'm waiting impatiently by the phone in order to reschedule it. I'm feeling out pages and pages of paperwork...things that I've forgotten. How many times has he been hospitalized? Where? How long for each time? What for? <br />
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Thankfully I have this blog! It's my journal. It keeps me straight, because otherwise I couldn't remember anything.<br />
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Nina and I went to the doctor today. That woman is a sadist! I've been working out really well lately, but I'm still not feeling very well. I went to request a sleep study, but now I have a full physical, fasting blood test, heart EKG and chest x-ray in my immediate future.<br />
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"How are your sugars? Are you taking your meds?"<br />
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"I....uh...er, no."<br />
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I was soundly rebuked, and after TWO HOURS there, managed to crawl away feeling quite chastised. I complained to Luke about what a Nazi the doctor was, and imagine my incredulity that he was firmly on her side! The traitor! ;)<br />
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Good news! I sold a short story to a really big venue! I don't want to announce it publicly until everything gets signed, but it's my biggest sale yet. The best part was that it was an invite-only antho, and not only was the editor kind enough to invite me, but I worked <em>hard</em> (Luke will attest) and it paid off. I'm very, very happy! You should be able to walk into practically any bookstore and pick this one up. More details later.<br />
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Also, I have decided to write a book about Niko and WS. There are many reasons for this. I write; that's what I do. It's how I process. But more importantly, I met with Noel the other day at the mall. Noel is a fellow MS mom, and it was such a pleasure to talk to her! Not only is she a wonderfully beautiful person, but she is strong. We talked about all of these things that we understood (keeping everything high so it isn't torn apart, for example) but most people didn't. We talked about friends and relatives who don't really "get the Williams thing". I want this to be a book that explains. I want it to be a book that you hand to your mother and say, "Here, Mom, I love you. This will explain my child." It will be sad, of course, because our lives have sadness. But it will be hopeful and delicate and, hopefully, a thing of beauty. I've thought about it for a long time, but I just finished two important projects, and it's time to start this one. I feel like taking a deep breath before I start. Wish me luck. Please pray that I'll do it justice.<br />
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All right. Back to filling out more paperwork. Have a lovely day, my friends.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com3tag:blogger.com,1999:blog-12438336.post-10600569375326860862010-02-08T18:25:00.001-08:002010-02-08T18:27:14.791-08:00Hooray!Niko just used a straw for the first time in his life. I teared up in the restaurant. Just sayin'. :)<br />
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Oh, and I lost a challenge and had to write and sing a song. Have you ever heard me? I sound like a child. That is<strong> </strong><a href="http://abrokenlaptop.wordpress.com/2010/02/08/and-now-i-sing/"><strong>here.</strong></a>Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com5tag:blogger.com,1999:blog-12438336.post-28078462207094955822010-02-03T13:42:00.001-08:002010-02-03T13:42:41.972-08:00Today Is Extremely Wonderful.It just is. I talk about it <a href="http://abrokenlaptop.wordpress.com/2010/02/03/im-queen-of-the-wooooooorld/">HERE.</a>Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com0tag:blogger.com,1999:blog-12438336.post-18564182803530614622010-01-30T19:58:00.000-08:002010-01-30T20:00:06.020-08:00UnremarkableEverything came back as "unremarkable". While, of course, I'm thrilled that there isn't anything inherently wrong with Niko's brain, it pulled the rug out from under us again. We were hoping to find something that we could correct. Something that we could treat. And explanation of some sort. Now we're back at square one again.<br /><br />But Niko is maturing and dealing with things better than he used to. I can look back and see progress, and that's something to be grateful for. :)Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com1tag:blogger.com,1999:blog-12438336.post-15579209976796848272010-01-20T10:16:00.000-08:002010-01-20T10:16:24.103-08:00Sedated MRI/renal ultrasound/blood testsNiko's tests are a go. My sweet boy is being sedated as we speak. Luke called from the hospital to say that all was well and Niko was doing really, really well. I could cry, I'm so happy and relived. They're looking to see if something in his brain is affecting his speech delays. Do I want them to find something? Do I want it to be clear? I don't even know what to pray for! All I know is that we're heading in the right direction, and I'm thankful for that.Mercedeshttp://www.blogger.com/profile/04611556398049064974noreply@blogger.com3