tag:blogger.com,1999:blog-4909606838414659042024-03-19T06:54:57.111-04:00He Makes All Things NewMary Elizabethhttp://www.blogger.com/profile/14138650404289911297noreply@blogger.comBlogger14212tag:blogger.com,1999:blog-490960683841465904.post-79662311790994619402018-06-21T15:18:00.000-04:002018-06-21T18:01:25.495-04:00Watching You Sleep<div style="margin: 0in 0in 0.0001pt;">
<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I quietly slip into John’s room, checking him one last time before tucking my own weary body in bed for the night. I look at my boy, curled up on his floor mattress, bed rails in place, and he looks so… small. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Another special needs mom (it’s a handy way to refer to myself and those in this tribe) once remarked that the closest she came to envisioning her daughter healed and whole, as she will be one day in heaven, was when she observed her while she slept. It is very true. High and low muscle tone no longer visible. Limbs not as contorted. Hands and feet at rest. All manner of moaning and sounds hushed. Rhythmically breathing in and out. Lying down as anyone does while sleeping. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I love to steal glimpses of my sons while they sleep peacefully –almost as much as their Daddy does. There is something magical about it. I have countless pictures of them in this state (and I <i>usually</i>remember to turn the sound and flash off of my phone). Sometimes their positions make us howl with laughter. Other times the simple breathing brings such relief as the panic can rise in my chest as I approach their beds. Some slumbering scenes are so beautiful that they simply take my breath away, in the best kind of way. </span><span style="font-family: "georgia"; font-size: small;"><o:p></o:p></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"> <i>These pictures of Michael are definitely the "howling" category. This child DOES have a bed... I include the bottom left photo for proof. However he much prefers this old lazy boy (or the floor behind it!) from "The Dump" - the same chair I lounged in 12 hours per day while on bed rest for almost 6 months with the twins. Oh, and he definitely took off his pj pants in the main photo and put this shirt on his legs instead. Ha!</i></span></td></tr>
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<span style="color: #454545; font-family: "georgia";"><span style="font-size: large;">Just a few months ago, John was fast asleep and he looked so much like Warren (his identical twin in heaven) that I called Meade back to see for himself. How I “know” what Warren looks like now or would look like at John’s height and weight, I cannot explain. I just <i>knew</i>. Little things sealed in my memory. The round face. The way John’s lips were turning out. That cherubic nose. Time stood still in this “thin place.” <o:p></o:p></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><span style="color: #454545;">Sometimes, it is not so easy to encounter the Sacred or get these glimpses of heaven on earth.</span><span style="color: #454545;"> </span><span style="color: #454545;">Monday night, John just looked small.</span><span style="color: #454545;"> </span><span style="color: #454545;">Fragile, vulnerable, exposed. And he</span><span style="color: #454545;"> </span><i style="color: #454545;">is </i><span style="color: #454545;">small. 39 pounds at 9.5 years old.</span><span style="color: #454545;"> </span><span style="color: #454545;"> </span><span style="color: #454545;">I feel like he has been 39 pounds forever.</span><span style="color: #454545;"> </span><span style="color: #454545;">In that moment, all I could see was John’s disability, all I could feel was sad, and all I could think was,</span><span style="color: #454545;"> </span><b style="color: #454545;"><i>Why</i></b><span style="color: #454545;">?</span><span style="color: #454545;"> </span><span style="color: #454545;">That futile question that continuously pops into all of our minds more often than we would like.</span><span style="color: #454545;"> </span><span style="color: #454545;"> Oddly enough, t</span><span style="color: #454545;">he haunting question that makes us doubt both God and ourselves is also the mystery that pushes us to lean in a little closer, to look a little deeper.</span></span><br />
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Logically, I know why. I know the head and church answers. We live in a broken world. All is not made new just yet. God has greater purposes that we cannot always understand and may not ever understand this side of heaven. He is weaving that frequently referenced "tapestry," and we only see that backside, a mess of tangled yarn. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I know why.<o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">But emotionally…. and on that gut human level… I will <i>never </i>know why. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Why some get to live “full” lives and others do not. Thinking and speaking people assert, “Who’s to say what a full life is?” You mean well, and I hear you. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">And yet no one can hear my child. What would <i>he </i>say? People claim he has a full life. </span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Would he claim that too? <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">When Stephen Hawking died earlier this year, people railed against Gal Gadot’s innocent tweet tribute in which she thanked Dr. Hawking and stated that he was now “free of any physical constraints.” She intended no harm, and I certainly do not believe she was outing herself as an “ableist.” (An ableist is someone who discriminates against individuals with disabilities.) Many with disabilities spoke out with sharp disapproval of Gadot’s remarks. And yet, as a mother of a significantly disabled son, I had to take note of the fact that those who spoke out are just that – those who <i>could </i>speak out. They are the ones who have the cognitive abilities and at least enough technological abilities to speak or to type out. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I had to throw my hands up in the air – what is wrong with wanting people in wheelchairs/with ALS/with communication devices to be “free”? What is so bad about wishing life could be a little easier for those we love and respect, and even for those we don't? For wanting those who do not have a voice to have one? Political views aside, isn’t that what the cry for separated children is about?<o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Most importantly, isn’t that what the gospel is all about? That Jesus came to revive us, speak on our behalf, and then give us a voice too? Didn’t Jesus come to usher in a kingdom where all is being made new and free? A Kingdom where we are called to participate in His redemptive work, praying His will be done on earth as it is in heaven? A world where we don't have to come up with cute euphemisms like “differently-abled” to take the place of the nearly outdated term, “disabled?” <o:p></o:p></span></span></div>
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<i><span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">On earth as it is in heaven. <o:p></o:p></span></span></i></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I am neither discounting how God can use wheelchairs nor how much good can come from disability. Additionally, I acknowledge how many men and women with disabilities and diseases come to a place where they wouldn’t trade that chair, that pump, that tank or that therapy. I applaud these brave souls; to God be the glory! Disability can be a powerful, redemptive platform. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Again, I know why. And yet I do not know why. <o:p></o:p></span></span></div>
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<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I behold my sleeping son on a random Monday night, desperately wanting to give him a voice – to hear his voice. I tire of putting on the brave, happy front as I wheel my child through a crowd, as I field genuine questions from confused children, as I contemplate the juxtaposition of attending an exhilarating conference at Princeton one week and then a laborious (and mainly just depressing) training on augmentative communication the next. And “oh yes, we are so grateful for John’s first power chair, and what a gift to have his communication device (going on 6 years)!” And oh yes, it is also… horrible. A power chair doesn’t come with the knowledge, skills, and dexterity to operate it. Similarly, a communication device does not provide instantaneous, clear communication. And by the way, it broke down again this week. Where is this oh-so-wonderful, digital voice when it has to be sent off for who knows how long to be repaired once more?<o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">And so it goes. We carry broken hearts, and we carry our son. As best we can, we attempt to help him put his best foot forward and to shield him from the weight of our sadness and from the broken interactions he encounters.<o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Our story is not wrapped up with a bow. What's more, we are not in the final act. But in this pilgrim journey, Jesus gives me a voice. He is comfortable with my sadness. After all, his heart broke first. We weep, we sow, we cling to His promise (Psalm 126).</span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">“My eyes long for your promise; <o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I ask, ‘When will you comfort me?’…<o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">You are my hiding place and my shield; <o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I hope in your word…<o:p></o:p></span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">Uphold me according to your promise, </span></span><span style="background-color: white; color: #222222; font-family: "georgia" , "times new roman" , serif; font-size: large;">that I may live,</span><span style="background-color: white; color: #222222; font-family: "georgia" , "times new roman" , serif; font-size: large;"> </span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">and let me not be put to shame in my hope!”<o:p></o:p></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;"><i><span style="background-color: white; color: #222222;"><b>-Psalm 119: 82, 114, 116</b></span><span style="background-color: white; color: #222222;"> <b> <o:p></o:p></b></span></i></span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Mother's Day.... Hopefully the first ANNUAL breakfast in bed tradition. :)</span></td></tr>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwJHSgRXIqaNXxbinZ9d01OPpao7WnchArDtcd6Tbo4PKAM-a0n6XKvjCwAhHqsD_mx8qH4ly6PPvDZuKOaFQ' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<span style="font-family: "georgia" , "times new roman" , serif; font-size: large;">I finished this blog post yesterday and then received the sweetest gift from the Lord this morning and captured it on video. (<a href="http://www.hemakesallthingsnew.com/2018/06/watching-you-sleep.html" target="_blank">Click HERE</a> and scroll down to watch video if you're reading this via email blast.) I had to share! This is brand new.... John is doing a crunch (his shoulders are off the ground although it is hard to tell) while "peddling" with his legs; the alternating of the legs is HUGE! </span><br />
<br />Mary Elizabethhttp://www.blogger.com/profile/14138650404289911297noreply@blogger.com1tag:blogger.com,1999:blog-490960683841465904.post-88880391358512590282018-02-22T14:17:00.000-05:002018-02-22T14:17:00.584-05:00Procedure Update and Fuchsia Pants<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">We are now a little over a
month out from John’s procedure, and I wanted to give you a quick update. All
in all, John is doing GREAT, and we are very encouraged with the results we
have seen so far. Thank you for your
prayers! I wish I could report he is
walking and talking already, HOWEVER the results and forward momentum we have
witnessed are very significant for John.
As Jesus taught us, if we expect anything we build to last, we better
have a sturdy foundation, right?! (See
Matthew 7:24-27.) <o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><b style="mso-bidi-font-weight: normal;">The foundation is getting stronger indeed. </b></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Here’s a list of everything we’ve noticed so far:<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Much improved appetite,
eating more quickly, taking in more food, weight gain!! (we pray this continues…
John is 9 years old now and right at 40 pounds.)<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Stronger trunk/abdomen;
sustaining prop-sitting with minimal support longer and better than ever before.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Increased weight bearing
on his legs when we hold him under his arms. Additionally, John initiates many
alternating steps in this position!<span style="mso-spacerun: yes;"> </span>This
will make the use of a gait trainer or walker possible and effective.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Improved energy and
alertness.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Improved eye contact that
is more immediate and more sustained.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Much improved communication
in general and specifically with the use of his communication device (which he
also uses his eyes to scan and then select choices on the screen).<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">-Fewer startles and
painful muscle spasms.<o:p></o:p></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Two cute examples of the
improved and more immediate communication:<span style="mso-spacerun: yes;">
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">For John’s 9<sup>th</sup>
birthday (just 5 days after the procedure), he received an awesome set of
instruments from one of his teachers.<span style="mso-spacerun: yes;">
</span>The child <i style="mso-bidi-font-style: normal;">loves</i> music, and
shaking a tambourine or banging on drums is something he can do by
himself.<span style="mso-spacerun: yes;"> </span>As children can be, John’s
siblings were eyeing his new toys, and Daniel wanted to take an instrument off
to play with it.<span style="mso-spacerun: yes;"> </span>We told him he needed
to go ask John.<span style="mso-spacerun: yes;"> </span>Daniel went up to John
in his wheelchair, inquiring, “John, can I play with your birthday gift, YES
(holding up left hand in front of John’s face) or NO (holding up right hand)?”<span style="mso-spacerun: yes;"> </span>John immediately hit the right/“NO” hand with
a big smile on his face.<span style="mso-spacerun: yes;"> </span>Ha!<span style="mso-spacerun: yes;"> </span>Well, Daniel is pretty smart (and sneaky!)
himself, so he asked John again but this time switched which hand stood for
which answer.<span style="mso-spacerun: yes;"> </span>John didn’t miss a beat and
immediately picked “NO” that was now indicated by Daniel’s left hand.<span style="mso-spacerun: yes;"> </span>We all chuckled (and almost burst out in
happy tears) at this very age-apporpriate conversation between our sons, and we
could tell Daniel was proud of his brother despite walking away instrument-less.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">The second story has to do
with John’s voracious appetite since the procedure.<span style="mso-spacerun: yes;"> </span>He was flying through his dinner, and I asked
him whether or not he wanted more.<span style="mso-spacerun: yes;"> </span>He
immediately brought his hands together and made the sign for “more.” I have
never seen him sign anything that clearly or accurately.<span style="mso-spacerun: yes;"> </span>I think I did cry this time (and let me add,
I am not a big crier<i style="mso-bidi-font-style: normal;">).<span style="mso-spacerun: yes;"> </span>I was communicating with my son in such a
real, accessible way</i>.<span style="mso-spacerun: yes;"> </span>We both were
able to experience what it felt like to truly have a back and forth
conversation.<span style="mso-spacerun: yes;"> </span>In that moment, the communication
frustrations on his part and the guesswork on mine were no longer necessary.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">And this is where hope
breathes in its fresh life.<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">A sweet sigh of relief when time seems to
pause</i>.<span style="mso-spacerun: yes;"> </span>The hope that declares, <b style="mso-bidi-font-weight: normal;">our story is not over</b>.<span style="mso-spacerun: yes;"> </span>The hope from above that gives strength for
another day and a childlike skip in each of our steps.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Our stories carry
pain.<span style="mso-spacerun: yes;"> </span>They just do. <span style="mso-spacerun: yes;"> </span>I will be the first to admit that and support
you in those facets of your story.<span style="mso-spacerun: yes;"> </span>However,
because I have experienced the pain, I know our stories also carry hope.<span style="mso-spacerun: yes;"> </span>And <b style="mso-bidi-font-weight: normal;">hope
does not disappoint</b> (Romans 5:5).<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Thank you for standing by
us in the story God is building in our lives.<span style="mso-spacerun: yes;">
</span>Now, go out and share your story as well!<span style="mso-spacerun: yes;"> </span>The Good, bad, and ugly all rolled in
together, I imagine someone will be touched, and <i style="mso-bidi-font-style: normal;">you</i> will find your own foundation strengthened.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">“<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: black;">Let the
redeemed of the </span><span style="color: black;">Lord<span style="background: white;"> tell their story.”<o:p></o:p></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: black;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Psalm 107:2a<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
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<span style="background-color: white; background-position: initial initial; background-repeat: initial initial; color: black;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Enjoy <a href="https://youtu.be/dM1lL68wOuk" target="_blank">this video</a> of John bearing weight and taking
alternating steps! Providentially
enough, this happened on February 8<sup>th</sup>, the 9<sup>th</sup> anniversary
of ushering John’s twin, Warren, from this earth into Jesus’ arms. (And on a
lighter note, please excuse my pajama pants he is wearing! We had a diaper incident earlier that day at
the doctor’s office, and I didn’t have a clean pair of pants for him. So the <b>fuchsia
pajama pants</b> had to do!)</span></span></div>
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Mary Elizabethhttp://www.blogger.com/profile/14138650404289911297noreply@blogger.com0