tag:blogger.com,1999:blog-19409412951147125452024-03-13T05:57:49.752-05:00In the Blink of an EyeThe story of our family and God's grace on this earthly journey when things do indeed change "in the blink of an eye."Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.comBlogger573125tag:blogger.com,1999:blog-1940941295114712545.post-77626159498131925662018-02-05T18:20:00.000-06:002018-02-05T18:20:34.333-06:00A snapshot of our dayI realize I haven't been on here in forever, but I never want to forget what our regular, ordinary days consist of sometimes. As so many of you know Sophie Kate is basically home bound from the months of December-March, the sick season is hard on our girl and we go to great lengths to protect her in every way we can during this time of year. The days are long though and can be quite lonely for both of us. This year more than years past I literally feel like the flu is raging right outside our door. Sophie Kate's three brothers are exposed to it in some shape or form every single day at school and then have to go through decontamination when they return home in the afternoon. When folks ask how we are doing, I answer with my go to phrase of "We're still hanging in there," and we are. And we will continue to do so until this awful flu season subsides; however, some of these regular routine days hold the sweetest moments.<br />
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Sophie Kate has been dealing with some pain for the last month. It's not terrible pain, but she does cry out from time to time and we are having a very difficult time pin pointing exactly what it is that is hurting her. It's not something that upsets her all the time or even some of the time, but we are dealing with something and as soon as all this flu stuff subsides we will investigate this further with her doctors, but right now it is not in her best interest to be anywhere near a doctor's office or hospital. So, as we do much of the time, we are managing her at home. <br />
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On this particular day, I had moved SK from her recliner to the couch so she could lay down for a bit and it triggered the pain that she has been dealing with and she began to make that face that we all absolutely dread, which is the Sophie Kate cry face, it will completely break your heart. Sophie Kate doesn't cry much at all so when she does, she means it. No one can take it and we will do anything it takes to get her to stop. On this day, Grey was home from school with us and he saw her begin to cry and came running over to her begging her to stop. I am not kidding y'all, this is what we do. <br />
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Grey had been listening to music on his phone. In fact, he had been at a church retreat just the weekend before and was listening to some of the worship songs from that weekend. He had been trying to remember/find one song in particular and he had finally found it and he was playing that song when he came running over to his sister. He pulled the ottoman up beside the couch so he could be near her and rubbed her cheek so softly while singing along to the song that was playing. This was my view...<br />
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She stopped crying when he held her hand and sang to her, "Come Lord Jesus, come Lord Jesus come, we will behold the Lamb of God our Father send your spirit and fill this place with freedom." Over and over he sang to her while she looked at him and knowingly smiled off and on, because she knows. She knows far more than we do about her/our Creator and when someone speaks or sings words of life to her, it becomes a moment you can see and feel. <br />
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She doesn't look at too many people like that, goodness she loves her brother and he thinks the sun rises and sets with that girl. Just a regular, ordinary kind of day where we shut the world out as we fiercely try to protect her. Thankful for these reminders on the long, hard days that seem endless this time of year.Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com1tag:blogger.com,1999:blog-1940941295114712545.post-91433227739710495762017-02-26T16:17:00.000-06:002017-02-26T16:18:42.469-06:00Church and Community<span style="font-size: large;">My husband, Chad was ordained as a deacon in our church last weekend and while folks would tell us that is it an honor, if we are being truthful, you instead become keenly aware of your sense of inadequacy. I am thinking that in this role as a servant in the church that is not entirely a bad thing. Nevertheless, Chad stood before our friends, family and fellow church members and shared how he came to know and follow Christ and little about our family's journey since then. He spoke about how God had been preparing him for that day in November of 2007 when our little Sophie Kate was born. Hearing him speak of those incredibly difficult days moved me and moved others as well. Chad has always had such an ease about his acceptance of Sophie Kate and all that is our world with her. It is an ease of acceptance that I have always somewhat envied. See, he's not always trying to "fix" her like I am. He just loves her and he just does for her...it's lovely. I love to hear him talk about her to other people. I had just never heard him speak to such a group about her as he did that night and it touched me and the boys deeply.</span><br />
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<span style="font-size: large;">As I sat in the room watching him speak, I could not help but think of all the people we love so much that were gathered there. I know Chad had to feel that too. There were so many who have been such an influence in our life. God has always known that we would be Sophie Kate's parents. God had spent years even lifetimes setting up the circumstances under which she would be born and raised. He knew what an incredibly difficult journey this would be and He surrounded us and settled us in a community and in a church that would love us, support us and encourage us. Those are not just good church words, please don't let those words fall flat because of their overuse. Let me be more specific...folks in that room pick up my kids from school when I can't, some sit with Sophie Kate so I can go to church, some take care of her at school, some do things with my boys to make them feel loved and special, some cook for us, some do laundry for us, all of them do life with us and pray for us. I could go on and on about our family and friends. They aren't just there when things are good, they aren't just there when things are bad. They don't tire of us and our girl and this journey we are on.</span><br />
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<span style="font-size: large;">God allowed Sophie Kate to come into our life. God allowed the incredibly difficult times to come into our life. He also set in place every single thing, every detail big and small to support us and to show His love for us. There is a passage in the Bible that talks about the parents of a blind man and the disciples of Jesus are asking what the parents did to deserve having a blind child. It is found in John chapter 9 verses 1-3, "<i>As He went along, He saw a man blind from birth. His disciples asked Him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him.'"</i></span><br />
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May there be no mistake, there is nothing that Chad or I possess except that of Christ in us that has equipped us for this journey. We are not good enough or strong enough or resourceful enough or determined enough for this...it is Christ in us. It is to His glory and it is His power and His love and His strength, not our own that sets our feet and hearts in motion. </span><br />
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<span style="font-size: large;">That evening was very special to our family and I will remember it for some time...that feeling of being among people who love God first and love other people second. We felt such love and support for our entire family. Thank you family and friends and church family for loving us the way you do. </span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com1tag:blogger.com,1999:blog-1940941295114712545.post-33792627943731626222016-12-23T16:08:00.000-06:002016-12-23T16:28:46.114-06:00God with Us<span style="font-size: large;">This Christmas has a different feel to it...different bad, different good I'm not sure...just different. I think it's pretty normal to take some inventory and realign priorities when someone close to you passes away. In addition, I have also met another family that is really struggling this Christmas season with real life stuff that's real hard. I have made statements like, "There is no end to the suffering here on earth." I know it's a strong statement. I don't feel like pretty-ing up my words right now. I am struggling with buying Christmas presents for folks who don't need anything and I am struggling with those same folks buying presents for me. I know y'all are all jealous that you can't spend Christmas with me this year, aren't you? No seriously, I don't say anything like that out loud because we're not supposed to, right? So I don't, but I am struggling with it just the same.</span><br />
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<span style="font-size: large;">At the core of it all...it's love...only love. All of our Creator's love sent to us in the form of His Son. A baby born to die because of unfathomable love for us...all of us. I want my children to know true happiness and joy not just the kind of happiness we get from opening presents, that is so temporary so fleeting. God, let them know true joy and happiness in their Savior...that is eternal. Let us be particularly aware of what a gift these moments are with the people we love...let that love be so real and so genuine to everyone we come in contact with. At the end of it all what we remember is how people made us feel...I rememeber my friend...</span><br />
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<span style="font-size: large;">Praying for peace and contentment in our Christmas, for cherished time with friends and family and at the center of it all...love. "</span><i><span style="font-size: large;">And they will call Him Immanuel (which means 'God with us')"</span></i><span style="font-size: large;"> Matthew 1:23. God with us and God in us will be the light in a world filled with darkness...it's only love and it's only Him.</span></div>
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<span style="font-size: large;">And yes my children are getting presents this year so no one panic...I said I felt that way I didn't say I actually followed through with it.</span></div>
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<span style="font-size: large;">Merry Christmas y'all.</span><br />
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Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-4247418198018793752016-12-12T11:03:00.000-06:002016-12-12T13:46:20.329-06:00On losing and gaining and continuing on...<span style="font-size: large;">As I sat on the bed with my youngest son one night, a ritual I cherish every night before he goes to sleep, he said her name, "Mrs. Theresa," the name of one of my dearest friends who was called home to be with our Lord almost two weeks ago. As soon as he said her name, meaning to have said another friend's name, he had an apologetic look on his face and diverted his eyes from mine. "I'm sorry," he said. No child, don't be sorry, don't ever be sorry, please say her name to me. She has been a huge part of your life since day 1...literally, she was there in the moments just before and just after you were born. Don't ever be sorry, how could you not continue to say her name, it has been a part of your everyday conversation in some shape or form all of your 10+ years. I know his "I'm sorry" was an attempt to avoid seeing his mama cry. It touches deep places in a son's heart when they see their mama cry and they would do just about anything to stop that pain. </span><br />
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<span style="font-size: large;">Please never stop saying her name. By saying her name your not reminding me of her passing, her physical absence in my life is felt and remembered with every second that ticks by. There is not one task, not one errand, not one minute that passes by that her and her family are not on my mind, on my heart or in my prayer. From the most simple to the most serious, we shared it all between us. Who will I talk about our favorite show "Survivor" with? Who will I share all my epic parenting fails with? Who will I call when I am irritated with my husband (that's just a "for instance" Chad, that probably never happened, <i>insert winking emoij here)</i>? Who will come over and have lunch with me when Sophie Kate and I are homebound? Who will I go eat at food trucks with? Who will I go to football games with? Who will I play games with? Who will I call when Sophie Kate is admitted to the hospital again? Who will I call when...</span><br />
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<span style="font-size: large;">Thankfully it is not possible to sum up 17 years of friendship, it will never be summed up it will only be remembered and cherished and relived over and over in my heart and my mind. Doing life with my dear friend Theresa and her family and all our friends is a privilege and will continue to be a treasure to me. There is no summing up or wrapping up of a lifetime there is only continuing on. Life has a way of continuing on...how dare the sun have the audacity of shining on a day such as this but it does and it's a beautiful picture and a visual reminder to us of the light of God in our darkness. When the satan wants us to dwell on our loss or on the finality of death, we know with certainty that it is a lie...it is not our truth. We grieve for our earthly loss but we grieve with hope. Our friend is with our Savior and Lord, she is healed and is with her Creator, her body no longer suffers from the cancer that she and her family have lived with for the past 6 years. We cry our tears because we will miss her so so deeply, but we have hope.</span><br />
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<span style="font-size: large;">As followers of Christ, as people who have chosen to accept Jesus Christ as our Lord and Savior, we know that we will see our friend again one day in Heaven. Our suffering for Christ is never in vain and our Lord will use every tear, every day of suffering to bring about good for the Kingdom of God. What satan has intended for harm, what satan has intended to cause despair, what satan has intended to destroy families, what satan has intended to cause people to turn from God will instead turn people to Him. Theresa's life and legacy will point people to God. Her influence and her example to each and every one of us will have an influence for the Kingdom of God. He is the author and perfecter of her faith and she is seeing that revealed to her in heaven. Praise be to God!</span><br />
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<span style="font-size: large;">I want to leave you with something I wrote just days after her passing when I was asked to give one word I would use to describe my friend...as you will see there is not just one word...</span><br />
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<i><span style="font-size: large;">Teaching...Theresa never stopped teaching and I don’t just mean her
class I mean all of us.<span style="mso-spacerun: yes;"> </span>She never stopped teaching.<span style="mso-spacerun: yes;"> </span>Whether it was in her
1<sup>st</sup> grade Sunday school class or in her Bible Study or in a backyard
Bible club or on mission trip or even there from her home and more specifically
her bedroom when her time got small, she taught us.<span style="mso-spacerun: yes;"> </span>Less than 6 months ago she was in Greenville,
South Carolina teaching 2 and 3 times a day for several days in a row because
of her love for Christ and for the children she and her family have been
serving there for 6 years.<span style="mso-spacerun: yes;"> </span>Even as
little as around 6 weeks ago she was at church teaching those precious 1<sup>st</sup>
graders in that room that has been her's for so long.<span style="mso-spacerun: yes;"> </span>There are not many of us here that have not
been personally affected by her faithful teaching of our 1<sup>st</sup>
graders.<span style="mso-spacerun: yes;"> As one of our friends said, </span>”She thought she was just teaching children, but
she taught all of us.”</span></i><br />
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<i><span style="font-size: large;">She was real and it was
that realness about her that bonded us so tightly as friends.<span style="mso-spacerun: yes;"> </span>There was never a time you didn’t know how
Theresa felt about something.<span style="mso-spacerun: yes;"> </span>There may
have been people in your life that you couldn’t get a good read on but Theresa
was not one of those people.<span style="mso-spacerun: yes;"> </span>She was for
her family and friends, she was for fun and games and good food and good times,
she was for playing tennis and for going camping, she was up for an adventure just
about any time, she was for catching up on her favorite TV shows and for staying
caught up with friends, she was for laughing until our sides hurt, she was for
listening and sharing and crying with us and for us when things got hard.<span style="mso-spacerun: yes;"> </span>She was for sharing parenting successes and
fails in such a clever and funny way.<span style="mso-spacerun: yes;">
</span>She was for people.<span style="mso-spacerun: yes;"> </span>She was for
Jesus.<o:p></o:p></span></i></div>
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<i><span style="font-size: large;">She loves.<span style="mso-spacerun: yes;"> </span>Scott,
Benjamin and Emily never have to wonder how their wife and mother felt about
them.<span style="mso-spacerun: yes;"> </span>What a wonderful gift to her
family and friends it is that we know exactly how she felt about us.<span style="mso-spacerun: yes;"> </span>She expressed it both in her words and
through her actions.<span style="mso-spacerun: yes;"> </span>Equally comforting
is that she knew how deeply she was loved as well.<span style="mso-spacerun: yes;"> </span>Through conversations, text messages, meals,
and running errands…through all the going and doing, laughing and crying…through
the big gatherings and celebrations and in the still quiet moments…we knew and
she knew…Scott, Benjamin, Emily, and Mr. White knew…there was always
love.</span></i><br />
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<i><span style="font-size: large;">She would be so uncomfortable with all this attention, but
it is her legacy, it is real, it is sure, it is strong and it is all for His
glory.</span></i><br />
<i><span style="font-size: large;"><span style="mso-spacerun: yes;"><br /></span></span></i>
<span style="font-size: large;"><span style="mso-spacerun: yes;">My dear friend, we will see each other again one day in heaven, until that time I will smile and laugh sometimes through tears in my eyes upon every moment we shared and it will be my honor and privilege to continue to love on, share with and do for your family.<i> </i></span></span><br />
<span style="font-size: large;"><span style="mso-spacerun: yes;"><i><br /></i></span></span>
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Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-64460026482743557982016-11-03T09:01:00.001-05:002016-11-03T09:01:39.828-05:00Nine Years<span style="font-size: large;">Nine years ago today you came into the world silent and still. Without a word you have changed our lives, we are grateful to God to share these days with you.</span><br />
<span style="font-size: large;"><br /></span>
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<span style="font-size: large;">Happy Birthday Beautiful.</span></div>
<br />Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-89984125040582456682016-10-25T11:52:00.004-05:002016-10-25T14:11:59.078-05:00When God seems silent<span style="font-size: large;">There has been a long silence on the blog over the past months. I want to fill y'all in on what has been going on...there has been so much. I will start from where I left off back in April. We have been battling Medicaid since the beginning of this year to get our private duty nursing hours reinstated (Medicaid denied them back in February). We have appealed their decision through every avenue we have available to us within their system. The most recent appeal has been through what Medicaid calls a "fair hearing." We are currently awaiting the judge's decision. I want to give a helpful and honest opinion about what this process has been like both positive and negative for my special needs friends that may be facing a similar situation, but today is not that day.</span><br />
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<span style="font-size: large;">This has been a long process filled with lots of "hurry up and wait." I found myself consumed and overwhelmed by this process. There were times when I had to just step away for a few days and could feel myself lighten up when I got some distance from all the preparation this process has demanded.</span><br />
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<span style="font-size: large;">We have sought the Lord first and foremost through these days. Should we continue in this process? Should we go through with the "fair hearing?" Why are none of the appeals going in our favor? Is this a sign, is that a sign? We have asked so many questions along the way and I can't say that I ever felt 100% about anything, one way or the other. It felt more like...silence.</span><br />
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<span style="font-size: large;">There was no strong feeling of yes or no in my spirit. We moved through each step feeling like, in the back of our minds, well, if we come up against something that is immovable is that our sign to stop or is that the time to push up against it...still silence. During the times in my life where I felt as though God was silent, I have to draw on what I know of Him...what His Word says about Him, what others have testified about Him, His magnificence in the the world around me, and the evidence of His hand upon my own life. </span><br />
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<span style="font-size: large;">Here is what I know...Christ settled once and for all how He feels about me and how He feels about you on the cross. With every tortured blow of that whip, love poured out. With the pounding of every nail, we were on His mind and on that third day death was defeated. It was there that Christ showed us how He feels about us, we never ever have to wonder about that or have to question that again.</span><br />
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<span style="font-size: large;">During even the most difficult of circumstances, when we feel like God is far away, when we wonder if He even knows or cares about what is going on in our life, when we ask why and don't get the answer we desire or maybe don't get any answer at all...we must know that His love for us never wavers, His presence never wanes, His plan never falters. When we question if God is still there, if He even loves us anymore and if He does then why is this happening or why isn't He doing something about it...take it to the cross my friend...that is where He showed His immense and indescribable love for us.</span><br />
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<span style="font-size: large;">Many times, we may feel that God is silent, but in reality, that is not how it is. Be encouraged today the God of the Universe loves you and He is near.</span><br />
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<span style="font-size: large;">Psalm 119:50, "<i>My comfort in my suffering is this: Your promise preserves my life."</i></span><br />
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<span style="font-size: large;">John 16:33, "<i>I have told you these things, so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."</i></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-79103155958954553042016-04-04T20:52:00.001-05:002016-04-04T20:52:29.385-05:00A Huge Burden<div class="tr_bq">
<span style="font-size: large;">I saw it there on the page in black and white for the first time in her over eight years, "Sophie is a huge burden to her parents." I know it must not be the first time anyone has thought it, but I have never heard it said to me or seen it written down with my own eyes...until that day. I know the context in which it was written, I know and love the person who wrote it and I know they love our precious girl. I know that it was written in order to help us in the fight we are in right now for services for our girl. I know all that and I am not mad at any body...but those words!!! Those words are a dagger, no a bullet, no a bomb...no there really are not words for those words and the damage they can do to the mind and soul.</span></div>
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<span style="font-size: large;">Satan intended those words for me on that day...and they dug deep into my being. I felt like dropping to my knees at that very moment, hanging my head down and pouring out every tear inside of me down my face and into my hands. I looked up from those words searching my surroundings for something, anything to distract me long enough to swallow all this mess down. I longed for even the smallest thing to grab my attention and my focus away from the these words turning over and over in my head. They were being branded into my mind. These words were intended for me. The enemy intended for me to read these words on this day. </span><br />
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<span style="font-size: large;">Right there on aisle 8 in between the paper towels and the paper plates, I read the email that held these words..."Sophie is a huge burden to her parents." Sophie is a lot of things to her parents but never ever a huge burden. These words hurt me deeply. But I wondered...does someone need to hear these words or read these words in order to approve help for us in taking care of our daughter in our home? That is so sad to me. I have seen, heard and read some incredibly difficult things about my daughter in these 8 years. I have read things like hypoxic ischemic encephalopathy, gastrostomy tube and seizure disorder. I have heard things like, "she will never walk or talk" and "she will never know who you are," by the way they were wrong about that second one big time, but today these are right up there with the worst of them.</span><br />
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<span style="font-size: large;">I know the reason these words hit me so hard is because she's mine. I feel like the world would agree with these words though. I feel like from the outside looking in most people would not even take pause at these words, even more, many would agree with them. She has to be a burden, doesn't she? How could she be anything but a burden to those around her? And I think that's why this digs so deep...it's the lack of understanding, it's having to attach the only words we know to situations and circumstances of which we know nothing. Folks look at her and they are scared to death, in their minds she is only associated with bad, tragedy and all the other negative words they can think of...so why not burden.</span><br />
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<span style="font-size: large;">Everything in me wants to come at those words with everything I have. My response though is pretty simple get to know her, get to know someone like her. Her worth is not found in diagnoses, her abilities are not bound to her wheelchair, her identity is not tied to labels. Quite the opposite, her Creator speaks very clearly to who she is in the book of John. </span><br />
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<span style="font-size: large;">"<i>As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind? 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him'" (John 9:1-3). </i></span></blockquote>
<span style="font-size: large;">And again in the book of Corinthians...</span><br />
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<span style="font-size: large;"><i>"But He [the Lord] said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong" (2 Corinthians 12:9-10).</i></span></blockquote>
<span style="font-size: large;">Instead of turning those words over and over in the dialogue of my mind, I will listen to the voice of Truth. We are all broken and sinful people who have been chosen by a holy, righteous God. She is not a burden, she is chosen. My beautiful girl you are chosen.</span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com3tag:blogger.com,1999:blog-1940941295114712545.post-12552975544411410262016-03-19T15:43:00.002-05:002016-03-19T15:47:34.608-05:00Spring<span style="font-size: large;">Spring signifies more to our family than just warmer tempertatures and blooming flowers. After months inside the house with our girl in an effort to keep her well, we emerge and carefully re-enter our little corner of the world that we left so many months ago. Seriously, if you see me out at all in March beware because I will most certainly talk your ear off on just about any subject.</span><br />
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<span style="font-size: large;">Sophie Kate went back to school last Monday and by Friday her week had completely exhausted her. It was wonderful to hear of the smiles and the good days she had. She works hard and plays hard at school and I am grateful that she was able to return this year. In past years once we take her out for the winter months she doesn't end up returning to school the rest of the year. This year, though, with her small class size we decided to give it a try. Every day that we are able to get her there, because believe me that is no small feat, feels like a small victory...that at 8 years old she is even still physically able to go to school is a gift. Y'all really, her doctors have been saying for years, "There will come a day when Sophie Kate is not able to go school and we're getting close to that day, but we're just not there yet." So you can see how every day that she is able to go is a privilege. And I try to look at it that way, when we are moving the mountains it takes to get her there by 8:15.</span><br />
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<span style="font-size: large;">Spring also brings a break in sports, we'll kinda sorta. Y'all know that football never ends so there's that and if you know Chad and I at all then you know that we are sooo fine with that. So when I say we have a break from sports I really mean that we are not doing any sports on the weekends, because Saturdays in the Spring belong to our girl and her horse. We are back at Special Equestrians with Sophie Kate for her fourth year there. It takes us longer to get there and back than it does for her entire lesson but those moments on her horse are indescribable. I would have never dreamed so many years ago that I would ever have seen her on a horse. </span><br />
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Spring 2015</div>
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<span style="font-size: medium;">Spring 2016</span></div>
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<span style="font-size: large;">She's doing well, she's getting back to normal activities, she's back to doing some of the things she loves. There continue to be hard days, but with that we have days like these too. Our God is providing and preparing a way in the hurt and in the happy. </span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-41626932138862476132016-01-13T11:21:00.000-06:002016-01-13T11:21:19.972-06:00Waiting<span style="font-size: large;">It has been quite some time since I have come here to share my thoughts and feelings. Sophie Kate has been doing well since her hospitalization in early November. She has been sick one other time since then and only by a miracle did we avoid another hospital admission. I find that I am able to put up a pretty good front when she is in the hospital. I am definitely in full nurse mode. It is only once we come home or have the threat of returning back to the hospital that I allow myself to completely fall apart. </span><br />
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<span style="font-size: large;">Thanksgiving, Christmas and New Years were so special this year with friends and family. We traveled some, which is proving to be harder and harder with each trip we make with our girl, but so worth it once we get where we are going and get to spend time with those we love. I want this girl and these boys to have these experiences as much as we possibly can. It is quite the task for Chad and I but somehow, I'm not really sure how, we get it done. We opened presents, we ate lots of good food and we spent some good quality time on our pjs. Most simply, I valued our time at home with these five that have my heart.</span><br />
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<span style="font-size: large;">I get real introspective, even more than I normally am, after spending days in the hospital with Sophie Kate. I know that these days when all six of us are together for extended periods of time are going to become fewer and fewer especially with one who will be driving later on this year. I value the time I get to spend with Cooper driving him back and forth from practice and other activities...well, actually it's him driving me back and forth. Nevertheless, I love the conversation I get to have with him one on one in those moments. We talk and we laugh and I love every second of it whether it is a trip across town to a game or if it is only the 10 minute drive home from practice. </span><br />
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<span style="font-size: large;">Being in the hospital with Sophie Kate, definitely refocuses me and reminds me to be grateful for the days I get to spend at home with her. I try to keep all that in perspective when the days run long and consecutively inside the four walls of our house. I try to keep my thoughts positive and to have a grateful heart that I am able to care for her at home instead of in the hospital. I am not even close to always successful in that endeavor. </span><br />
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<span style="font-size: large;">I heard something last week that I have been turning over and over in my mind...and it is about waiting. I know that sounds so boring and so not fun, but just waiting. Waiting on the blessing...not wishing/wanting/longing for or even worse demanding (God help us) something now that if we were to wait for God's timing would be a blessing in our future. Right now is a "no" or it's a "wait," which is so so hard in the instant gratification world we live in. And then in the waiting, in the meantime, can we/can I be grateful, can I find joy? This is tough stuff and when I try to tackle this myself I am overwhelmed, because I can't do this I don't even want to do this. But God...this is the game changer, I can't do this but God can. It's too much for me, I am not capable but God can take the hopeless and give hope. He can handle the hurt and provide healing. He can change our heart if we are willing and we can feel His joy again. </span><br />
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<span style="font-size: large;">The days can feel so dark to me, God is my light. Psalm 18:28, "<i>You, Lord, keep my lamp burning; my God turns my darkness into light.</i>"</span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-41762112734764217282015-11-13T16:56:00.001-06:002015-11-13T17:41:09.447-06:00Her Birthday<span style="font-size: large;">I have kind of been avoiding this blog during the time surrounding Sophie Kate's birthday. I refused to be sucked into another downward spiral of how difficult this time of year is for me. Really and truly it wasn't even that I was making a conscious decision to avoid this space it's just that it hasn't even been on my mind. Sophie Kate has been healthy for some time and we had a small, just the 6 of us family party planned for her on November 7th. Y'all know how much she loves animals, so her daddy had arranged for an animal encounter for her at our local zoo. It was going to be perfect...no cake, no ice cream...just some of the things Sophie Kate loves. </span><br />
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<span style="font-size: large;">Instead, her party had to be cancelled and I found myself standing over her hospital bed on her birthday (November 3rd)...and it wasn't her hospital bed that is in her room at home, it was the real life kind that is located on the 7th floor Special Care Unit of Children's Hospital. Sophie Kate was admitted to Children's on November 2nd with aspiration pneumonia. We spent 6 days there including the day she turned 8 years old.</span><br />
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<span style="font-size: large;">The irony was not lost on me that 8 years ago I stood over her hospital bed which then was an incubator in the NICU. However, we are not the same people we were 8 years ago, her and I. And even though we found ourselves in very similar circumstances, we know that our situations do not dictate our joy and our hope in the name of Jesus. I will not lie and say that day was all sunshine and rainbows because it wasn't...she was sick and we had an uphill climb ahead of us, but it's not a mountain that we are unfamiliar with. This is familiar terrain for us, we have traveled these roads before and as much as I hate that this is our world, we know it and we know how to go about getting on with it.</span><br />
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<span style="font-size: large;">The beauty of that day was that we were surrounded by so many who were there that same day 8 years ago when we were broken and in need of being pieced back together by our Creator and Healer. The One who knows our inmost parts knew that we would need these people every single day of this journey and 8 years later they are still here...those things were not lost on me.</span><br />
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<span style="font-size: large;">We are home now and at the beginning of the "sick season." This too is a familiar place...being home with her. We feel safe and protected here. It's a necessary part of our life to be here for these months with her. We are literally nursing her back to health...it will take time.</span><br />
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<span style="font-size: large;">We are seeing glimpses off and on of our smiling, bright eyed girl. We are ready for her to be fully back to us but for now we will keep sitting by her, caring for her, talking to her and praying over her. Her biggest smile since she has been sick came when she was discharged from the hospital and we were on our way home...</span><br />
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<span style="font-size: large;">Happy Birthday Beautiful, every one with you is a gift.</span></div>
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<span style="font-size: large;">James 1:17 <i>"Every good and perfect gift is from above, coming down from the Father of heavenly lights, who does not change like shifting shadows."</i></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-5475101271053775952015-11-03T21:40:00.000-06:002015-11-03T21:40:03.607-06:00Happy Birthday SK<span style="font-size: large;">Eight years ago I stood at your bedside and today I stand there still...waiting on that smile that rights my world. </span><br />
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<span style="font-size: large;">Happy Birthday to my precious girl!</span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com1tag:blogger.com,1999:blog-1940941295114712545.post-20333359800298865062015-09-20T21:10:00.001-05:002015-09-20T21:10:08.622-05:00His Perfect Will<span style="font-size: large;">I know y'all may be tired of me recounting my small group hour at church and subsequently just write about what other people say, but it's good stuff and maybe I just need to hear it again and maybe I just might need to read it again one day as well. I have to preface this week's topic of "When bad things happen to good people" though by saying that it is my least favorite topic and usually when I know about this topic ahead of time I skip class...yep that's the real truth of it. But this week I forgot that we were covering my least favorite topic ever so there I sat.</span><div>
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<span style="font-size: large;">But God is not in the business of wasting time in dealing with us. Our hurts, our difficulties and our pain is not in vain. God uses every last bit of happiness and hurt that we experience to bring us and those around us into a closer/deeper relationship with Him. He brings good out of tough situations...Glory to His Name!</span></div>
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<span style="font-size: large;">God created a perfect world. He did not create a world with sin in it, that was our doing. Our bad decisions, our poor choices brought sin into the world not a holy, righteous God. He cannot be something He is not and He is not sin. He is perfect. Therefore, He cannot bring anything but a perfect plan to our difficult circumstances. When we see nothing but darkness He is the light. In our imperfection, He still has a perfect plan. Sometimes the things that come our way in life are a result of our bad decisions and our poor choices and sometimes those things happen as a result of the sinful/fallen world we live in, nevertheless, God still has a perfect plan. He is not pleased with our poor choices and He desires for us to make wise, God-honoring decisions but He does not abandon us in our difficulty.</span></div>
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<span style="font-size: large;">We attach our human words and our human emotions to God, because we don't know of any other way to describe Him or feel about Him, but our words fail miserably in comparison to His majesty. Our emotions no matter how strongly we feel them fall so very short in comparison to the all encompassing love of our Savior. He cannot be anything other than who He is...and He is holy and righteous. His will is perfect, even though I am not. </span></div>
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<span style="font-size: large;">1 Corinthians 2:9, "<i>What no eye has seen, what no ear has heard, and what no human mind has conceived-the things God has prepared for those who love Him-these are the things God has revealed to us by His Spirit."</i></span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-54039924743264767842015-08-30T17:19:00.004-05:002015-08-30T17:25:23.931-05:00Obligation vs. Opportunity<span style="font-size: large;">Today in our small groups at church we talked about obligations. How do we define an obligation? What are our obligations? How do we feel about our obligations and what keeps us from fulfilling all of our obligations? Yes, there was lots of talk about obligations and as a whole we all agreed that the word "obligation" has a negative connotation. It's something we have to do or we feel like we have to do whether we like it or not. Of course we had some fun with it and laughed a good bit at the things the guy groups and the girl groups came up with, but in the end it came down to our attitude and the way in which we choose to view things. </span><br />
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<span style="font-size: large;">When we only give God bits and pieces of our life and still try and cling to/control the other areas then those things begin to weigh us down. Those things start to feel like tasks or jobs or...wait for it...obligations. However, when we give it all to God...our family, our work, our finances, our extracurricular activities, etc then we can begin to see our obligations differently.</span><br />
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<span style="font-size: large;">I have a real life example, I am living it actually. Now please don't hear what I'm not saying, I don't live it perfectly. I am no more here to judge you than I want to be judged myself. I wake up every morning to a day that can be viewed as an obligation or as an opportunity just like you do.</span><br />
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<span style="font-size: large;">Eight almost nine years ago when our little girl was born the world told us it was a tragedy and that taking care of her would be a burden to our family. We had a choice then just as we do now, are we going to walk through this thing with God or without God. Everything you go about doing throughout your day we have to do for Sophie Kate. We have to care for her in every way you can think of and in lots of ways you can't. Yes, there have been many many days that I approached her and all the things I had to do for her as an obligation. However, over the years God has been more patient with me than I deserve and He has shown me through her sweet spirit that she is not a burden as the father of lies would have me believe.</span><br />
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<span style="font-size: large;">She gives me far more than I could ever give or do for her. She gives me the opportunity to be a better person by loving her. She gives me the opportunity to be selfless by putting someone else's needs above my own. When I look at her and love her as God looks at her and loves her, not that I can be equal with God or do exactly as God does but I can follow the example Christ has set, then she is not a burden or an obligation. In fact, it becomes my pleasure and my privilege to care for her. It is in these moments when my obligations, my gifts, and all the demands of life are given over to God that I can see the things that really matter and it isn't the things we are bombarded with every day. It is in these moments that God reveals His priorities and contrary to what I may think or want it has nothing to do with outward appearances or what my house looks like or what kind of car I drive.</span><br />
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<span style="font-size: large;">I can see what I once viewed as my obligations as opportunities when I see them as God sees them.</span><span style="font-size: large;"> </span><br />
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<span style="font-size: large;">Philippians 4:8 "<i>Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things.</i>"</span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-75333692103839729672015-07-06T18:04:00.001-05:002015-07-06T18:04:27.552-05:00But God...<span style="font-size: large;">I had to let go of the dream of seeing Sophie Kate come down the aisle a long time ago. I had to mourn the loss of her in a beautiful dress and all things wedding. And while it is not something I think about every day, it is something that creeps back into my mind, my thoughts and my dreams from time to time...and each time I have to let go of it again. As far as I was concerned, I had to come to terms with the fact that it would never happen. That's how I dealt with it...just let it go, it will never happen.</span><br />
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<span style="font-size: large;">But God...</span><br />
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<span style="font-size: large;">I love when stories begin that way because something really special is about happen, something that is unexpected, unforeseen and truly lovely. </span><br />
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<span style="font-size: large;">God brought families together and formed relationships that have grown over many years. Through that friendship and through that connection God brought about the unexpected.</span><br />
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<span style="font-size: large;">Our sweet girl as the flower girl in Callie and Conley's wedding...</span><br />
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<span style="font-size: large;">We did it all from the Bridal Tea, to the Bridesmaids Brunch...</span><br />
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<span style="font-size: large;">to the Rehearsal, to the Rehearsal dinner...</span></div>
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<span style="font-size: large;">to the Wedding itself. For all things wedding our girl was front and center, ahem, I mean after the Bride and Groom, of course.</span><br />
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<span style="font-size: large;">Hanging out in the Bride's room...</span></div>
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<span style="font-size: large;">Getting her hair done...</span></div>
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<span style="font-size: large;">Ready for the big day with her best guy by her side...</span></div>
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<span style="font-size: large;">Yes, Grey was in the wedding too. He pushed her down the aisle and yes it was almost more than my heart could hold.</span><br />
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<span style="font-size: large;">I got to see my girl come down the aisle...a dream that I believed died the day she was born. God is in the details of our lives!! Someone needs to hear that today. He cares about our hurts and our hearts. </span><br />
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<span style="font-size: large;">It was a perfectly lovely day. </span><br />
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<span style="font-size: large;">Psalm 27:13-14 "<i>I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."</i></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-72973540680980225702015-06-02T10:51:00.001-05:002015-06-02T10:51:01.829-05:00What we have been up to<span style="font-size: large;">I have been so neglectful of the of the blog lately. I guess I just needed some time away from it. I mainly keep it for a scrapbook for our family and now that I am off facebook I do not dare assume there are any readers left other than the occaisonial grandparent. I am defintely going to finish our Give Kids the World trip, but I wanted to catch y'all up on what we have been up to. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">When we found ourselves at the being of February, I knew we would be so busy and the time would just fly between those days and the end of school...and it did. We had our Give Kids the World trip in February, we went "camping" with friends for Spring Break at the end of March and then we had our annual family trip to Smith Lake a bit early this year the week of Memorial Day.</span><br />
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<span style="font-size: large;">I knew that three trips in four months would not be easy with our girl, but Chad and I want her to have every experience she possibly can and we all want to do those things with her and with each other. With February and the coming months laying out before me, some of my thoughts tried to convince me that it would just be easier to stay home...those thoughts are right, you know. It would be easier to stay home, in our environment, in her enviornment. It would be easier to stay home where all of her equipment is easy to get to and we have her chair and her bed and all her stuff. </span><br />
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<span style="font-size: large;">Traveling with Sophie Kate is hard work, but the experiences with the people we love are so worth it.</span><br />
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<span style="font-size: large;">Smith Lake 2015</span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-45699579266860823662015-04-21T12:56:00.000-05:002015-04-21T12:57:39.093-05:00Hollywood Studios<span style="font-size: large;">Day 5 we found ourselves back on Disney property at Hollywood Studios. First up on the agenda was going to see the Frozen show. I had been looking forward to this all week and it did not disappoint.</span><br />
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<span style="font-size: large;">Front row seats again, Disney takes care of their special needs families.</span></div>
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<span style="font-size: large;">Sweet Minnie, she is always so darling with our girl.</span></div>
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<span style="font-size: large;">It was very cold at Hollywood Studios that day, can you tell? We were well prepared and happy to be there, because as cold as it was there in Florida that day, we knew it was much colder back home.</span><br />
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<span style="font-size: large;">Our Disney girl, loving being at the happiest place on earth.</span></div>
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<span style="font-size: large;">Our Sophia meeting Sophia the First.</span></div>
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<span style="font-size: large;">Looking back at these pictures brings tears to my eyes. We waited for this trip for so long. These are some of the sweetest memories now of a trip that was more than we could have ever dreamed or imagined. </span><br />
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<span style="font-size: large;">Our last day is coming up next and you won't believe what all we squeezed into one day...or you just might if you know how crazy we are about Disney. </span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-65895988461092767022015-04-08T14:17:00.001-05:002015-04-08T14:21:07.642-05:00Seaworld Orlando<span style="font-size: large;">On day four of our Give Kids the World/Magic Moments trip we went to Seaworld. </span><br />
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<span style="font-size: large;">This was the first trip to Seaworld for all of the kids. It was one of our most fun days and as you can see even though we had on long sleeves, it was a beautiful day.</span><br />
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<span style="font-size: large;">I could spend hours at the dolphin nursery. This guy popped up to say "Hi." Doesn't it look like he is smiling for the camera?</span><br />
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<span style="font-size: large;">The Shamu Show was amazing and the GKTW families had priority seating. We were one row up from the splash zone, front and center. </span><br />
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<span style="font-size: large;">Shamu Stadium</span></div>
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<span style="font-size: large;">Sophie Kate feeding the Sea Lions...</span><span style="text-align: center;"> </span></div>
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<span style="font-size: large;">Her face is fantastic!</span></div>
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<span style="font-size: large;">Please note the second to the last row...that's all of our guys riding the Manta...SK and I opted out of that one.</span><br />
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<span style="font-size: large;">The Dolphin show was very cool.</span></div>
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<span style="font-size: large;">The Empire of the Penguin</span></div>
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<span style="font-size: large;">I really enjoyed watching the penguins but it was really cold in their home.</span><br />
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<span style="font-size: large;">Grey was being silly in every one of these pictures so I had to just choose one.</span><br />
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<span style="font-size: large;">Seaworld was a huge hit with our group. I think they liked the combination of shows and thrill rides. We had a wonderful day there.</span><br />
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<span style="font-size: large;">Next up we are back on Disney property at Hollywood Studios.</span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com1tag:blogger.com,1999:blog-1940941295114712545.post-85566894811078037982015-03-24T21:03:00.000-05:002015-03-25T07:19:44.522-05:00Back at Universal<span style="font-size: large;">Day three we were back at Universal Studios. </span><span style="font-size: large;">While the boys rode their coasters, Sophie Kate and I made our way through some shows and characters.</span><br />
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<span style="font-size: large;">I'm just going to tell y'all that there wasn't much SK could ride at Universal, but she did get to go on the Minion Mayhem ride and it was super cute. We also put her on a "baby" roller coaster that they almost made us get off of, but they didn't but those were the only two she was able to ride besides the carousel. At the age of 7, SK has been on more than her fair share of carousels...she's kind of over it. She wants to ride rides and unfortunately Universal is not the place for her to do that. The boys had a ball and y'all know that our girl had a smile on her face the whole time.</span><br />
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<span style="font-size: large;">Of course we had to make another trip to the Wizarding World of Harry Potter while we were there again, but I will spare y'all any more pictures from there. Rest assured we went on all the rides again and took in every corner of Hogsmeade and Diagon Alley...that was good times!</span><br />
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<span style="font-size: large;">Next up is Seaworld Orlando...if you ask the boys what their favorite park was they will all three answer Seaworld. How could it not the be perfect day every day with mornings like this...</span><br />
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<span style="font-size: large;"><br /></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-57634754124320985322015-03-15T19:58:00.001-05:002015-03-15T21:23:06.755-05:00The Magic Kingdom<span class="Apple-style-span" style="font-size: large;">Day two, we woke up and headed to mine and Sophie Kate's favorite place...Disney's Magic Kingdom. Our first order of buisness was going to see Anna and Elsa.</span><br />
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<span class="Apple-style-span" style="font-size: large;">While the boys were riding roller coasters, Sophie Kate and I went to see Rapunzel and Cinderella...</span><br />
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<span class="Apple-style-span" style="font-size: large;"> I love all the conversations they have together.</span></div>
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<span class="Apple-style-span" style="font-size: large;"> Sophie Kate's face in these pictures with Cinderella is priceless.</span></div>
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<span class="Apple-style-span" style="font-size: large;">This wasn't even close to what all we did in the Magic Kingdom that day. With the special pass (the Genie pass) they gave us (you can see it on Jacob in the picture below), we went around the Magic Kingdom seeing all of our favorites...</span><br />
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<span class="Apple-style-span" style="font-size: large;"> Princess Belle with our Princess Belle...</span></div>
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<span class="Apple-style-span" style="font-size: large;"> Sweet Minnie, SK smiled so big for her...</span></div>
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<span class="Apple-style-span" style="font-size: large;">And along the way we rode all the rides too, many of them multiple times. Sophie Kate rode the Teacups, Buzz Lightyear, Pirates of the Carribbean, Dumbo and the Haunted Mansion. Part of the reason I love Disney so much is that they let our girl ride anything she wants to ride. </span><br />
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<span class="Apple-style-span" style="font-size: large;">There was plenty of time along the way for ice cream and funnel cakes too. We had to pace ourselves because the Magic Kingdom was open from 8am-1am that day.</span><br />
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<span class="Apple-style-span" style="font-size: large;">One of the neatest things that happened that day was that we were pulled out of a 45 minute wait at Be Our Guest Restuarant. We had just walked up to the back of the line and had asked how long the wait was, when one of the Disney cast members saw our pass and told us to follow them. She took us straight to the counter to order and then took us to a seat. That, I have to say, was quite lovely because we really wanted to eat there but didn't want to wait that long...that to me was Disney at it's best.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Sophie Kate was in her Princess Belle dress that day too, so it could not have worked out any more perfectly...of course it did, we were at Disney.</span><br />
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<span class="Apple-style-span" style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjahJ7ZsszrdOHSWZ8bv4XoqC4xjBPoSxxCOcm3vnnD8CQmjYd1Z0YO-MZJbkxoVm71tFXBt3UgEFmrqI5PSiQQYfRBixC6fFaLV1-sOH5q3QKAdex7hLO-n4jWGKf3FrmyFbBoJ_83Q1g/s1600/wdw2015048191242075_7198365094.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjahJ7ZsszrdOHSWZ8bv4XoqC4xjBPoSxxCOcm3vnnD8CQmjYd1Z0YO-MZJbkxoVm71tFXBt3UgEFmrqI5PSiQQYfRBixC6fFaLV1-sOH5q3QKAdex7hLO-n4jWGKf3FrmyFbBoJ_83Q1g/s1600/wdw2015048191242075_7198365094.jpg" height="266" width="400" /></a></span></div>
<span class="Apple-style-span" style="font-size: large;">We saw many of these characters after the sun went down. We love late night at Disney. One of my favorite things at Magic Kingdom at night is the Electrical Parade. We caught the later of the two parade times that night, so we found ourselves sitting and watching the Electrical Parade at 11:00pm. The perfect ending to a magical day.</span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-9776989006098562312015-03-05T14:29:00.000-06:002015-03-05T14:29:31.334-06:00Wizarding World of Harry Potter<span class="Apple-style-span" style="font-size: large;">Our first day in the parks was spent at Universal Orlando, Islands of Adventure. Now y'all know that I am a Disney girl at heart, but being pretty huge Harry Potter fans we were really excited about The Wizarding World of Harry Potter. It did not disappoint, although I have found myself saying that there is only one place that could have done Harry Potter any better than Universal Orlando...yep that's Disney, ha...but seriously we really did love it.</span><br />
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<span class="Apple-style-span" style="font-size: large;">We all tried the Butterbeer. Jacob and I ended up being the only ones that liked it, but at least we can all say we did.</span><br />
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<span class="Apple-style-span" style="font-size: large;">I told y'all we all tried it, you didn't believe me did you?</span></div>
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<span class="Apple-style-span" style="font-size: large;">Hogsmeade</span></div>
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<span class="Apple-style-span" style="font-size: large;">Diagon Alley</span></div>
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<span class="Apple-style-span" style="font-size: large;">These last two pictures are only going to mean something to real Potter fans...this was the train we rode at King's Cross station it looked like it was straight out of the movies, in fact the whole place was like that. We really felt like we were at King's Cross, Hogsmeade and Diagon Alley...such a fun day.</span><br />
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<span class="Apple-style-span" style="font-size: large;">We were off and running on our first day, 9a-9p...done. </span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-89704602746275408852015-02-28T10:24:00.001-06:002015-02-28T10:24:29.440-06:00Our Arrival<span class="Apple-style-span" style="font-size: large;">There is so much to share from our Magic Moments/Give Kids the World (GKTW) vacation that I don't even know where to start. How about from the very beginning...</span><div class="separator" style="clear: both; text-align: center;">
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<span class="Apple-style-span" style="font-size: large;">Our friends from Magic Moments met us at the Birmingham Airport on Valentines' Day to send us on our way in style. Yes, we left to go to the happiest place on earth on Valentine's Day, not too bad, huh? Magic Moments (<a href="http://www.magicmoments.org/">www.magicmoments.org</a>) is the organization that sent us on this trip of a lifetime and Give Kids the World Village is the place we stayed at in Kissimmee, FL. Sophie Kate was given a little Mickey Mouse and some glow sticks and bracelets for all the parades and nighttime shows we would be attending on our trip. The boys were given a bag of snacks and candy for the trip thus kicking off a week of over indulugence (in a good way) like we could have never imagined.</span></div>
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<span class="Apple-style-span" style="font-size: large;">On the plane, Sophie Kate was fussed over by the flight attendants of course. And in true SK fashion, she did better than I did on the flight over and let's just leave it at that. We were then met at the Orlando airport by a sweet lady holding this sign...</span></div>
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<span class="Apple-style-span" style="font-size: large;">Yeah, we were feeling kind of like celebrities at this point. She took us to get our luggage, took us to our rental van and then made sure we had our directions to Give Kids the World Village. Once we made it to the village, our children received even more welcome gifts and then we were taken to our villa.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Our villa was just beautiful and fit our family of 6 perfectly. It backed up to a lake and was on a quiet little street just around the corner within walking distance from all the fun stuff. Magic Moments ordered all the medical equipment and supplies Sophie Kate would need for the week and they delivered it all to our villa. The only things we brought with us, medically speaking where the things we needed for her on the plane and her medicines. When I say we were completely taken care of, it doesn't even begin to describe it.</span><br />
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<span class="Apple-style-span" style="font-size: large;">We arrived at GKTW around 4:00 on Saturday, Feb. 14, so after unloading we spent the rest of the evening exploring. We played Putt Putt golf, in which Sophie Kate proceeded to beat all of us unmercilessly. Of course, everything and everywhere at the Village is completely accomodating and accessibile for wheelchairs.</span><br />
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<span class="Apple-style-span" style="font-size: large;">We had dinner at the Gingerbread House, where would be having many meals during our stay. </span><br />
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<span class="Apple-style-span" style="font-size: large;">Cooper and Jacob even got involved in some of the games that evening. We found out very quickly that there is always something going on at the Village.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Their cup stacking skillz came in handy.</span></div>
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<span class="Apple-style-span" style="font-size: large;">I went to a parent meeting that night where my mind was blown even further. We received tickets to Walt Disney World, Universal Orlando and Seaworld Orlando. In addition, we received a special pass for all three parks that only GKTW families receive. Those passes gave us access to a once in a lifetime trip. </span></div>
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<span class="Apple-style-span" style="font-size: large;">As special as this trip was for our family and y'all all know how much I love Disney, equally special was the time we spent at GKTW. The village is run mainly by voluteers. The actual employees we saw paled in comparison to the huge amounts of volunteers. These folks made us feel so special during our stay. Give Kids the World Village was started by Henry Landwirth, who is a survivor of Auschwitz concentration camp. Please go to their website (<a href="http://www.gktw.org/">www.gktw.org)</a> and read about his story and how his vision for the Village has grown into the amazing place it is today for special needs children and their families. </span></div>
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<span class="Apple-style-span" style="font-size: large;">Well, that was our arrival day. It was packed full and set the stage for an unforgettable week of suprises, experiences and memories. </span></div>
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<span class="Apple-style-span" style="font-size: large;">Here is a small glimpse into our week at the parks...</span></div>
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<span class="Apple-style-span" style="font-size: large;">Y'all know I will give each day its due. I am going to have so much fun reliving this trip through pictures with you. Thanks for continuing to share in this journey with our family...it's gonna be fun!</span></div>
Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-77183949079621365472015-02-21T08:09:00.003-06:002015-02-21T08:10:42.171-06:00Where we've been...<span class="Apple-style-span" style="font-size: large;">We have just returned from a week long vacation at this place...</span><br />
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<span class="Apple-style-span" style="font-size: large;">I cannot wait to share all of the details of our Give Kids the World trip, but at the moment I am finding it all so much to process myself. It was a once in a lifetime experience for our family. There were so many memories made and so many neat things we were able to experience together. I will get to them all, but for now we are trying to deal with the harsh reality of returning to normal life, haha.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Sooo much more coming soon!</span><br />
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<span class="Apple-style-span" style="font-size: large;"><br /></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-65709530635789190582015-02-04T20:13:00.001-06:002015-02-04T20:16:16.645-06:00A New Nurse<span class="Apple-style-span" style="font-size: large;">I have the neatest story to share with y'all about how we met Sophie Kate's new nurse. We still have our nurse and friend Kelly, who has been with us for 4 years now, it's just that we have been approved for more nursing hours than one person can work. We have been looking for a new nurse since September and all along I have consistently said, "I know God already has this special person picked out for us we are just really ready to meet her." And that's the really cool part...how we came into each other's lives.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Every December our church hosts a dinner for families in our area. It's a special time of eating, presents and getting to know new folks. In December 2013, our family did not get to participate because Sophie Kate was so sick. However, all of us were back together and well this past December and able to participate. In the course of talking to the family we were sitting with, I shared with the mother that we were currently looking for a nurse to care for our daughter. Immediately, she said, "I might know someone," and proceeded to call them right then and there. Well, a text led to a phone call and a phone call led to a visit and well the short version is....we have a new nurse for Sophie Kate. </span><br />
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<span class="Apple-style-span" style="font-size: large;">She is just precious. I love how she has jumped in unafraid to take our girl on. Yes, she's a nurse and that's her job, but Sophie Kate can strike fear in even the most confident caregiver. The quality I love most about her is the sweet way she interacts with SK. I can teach just about anyone the medical aspects of caring for SK. I can even teach non-medical folks how to take care of her, but I can't teach them to love her. I can't teach them to be tender and gentle and kind. I can't make them connect with her. So it's not just job competentcy that allows me to leave the house worry free, it's their connection, it's the relationship I see already forming that sets my mind at ease. </span><br />
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<span class="Apple-style-span" style="font-size: large;">The things I see that encourage me is the way she brushes Sophie Kate's hair and the soft sweet way she talks to SK when she doesn't even know I'm listening...that is what going above and beyond the job of hanging a feeding bag looks like. Isn't it neat to look back and consider things...in September and even before that, before we even knew we had a need for another nurse God was already preparing. Preparing us and preparing her for that meeting on December 10th...I knew she was out there, we are so glad to have met her...I am encouraged. </span><br />
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<span class="Apple-style-span" style="font-size: large;">Philippians 4:19, "<i>And my God will supply all your needs according to His riches in glory in Christ Jesus."</i> </span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0tag:blogger.com,1999:blog-1940941295114712545.post-24064138621559117432015-01-28T07:51:00.002-06:002015-01-28T07:51:42.398-06:00Homebound<span class="Apple-style-span" style="font-size: large;">Things have been quiet around here because quite frankly there is not a lot to report...and that's a good thing. Sophie Kate hasn't been seen around town much these days because it is "sick season." She is home from school, she is home from church and she is home from just about all extracurricular activities. I would normally have a huge problem with that because there is always a part of me that gets sad that she can't get out and go places with us during the winter. However, when I look back on this season so far, I know without a doubt that we have made the best decision for her. She has been so healthy so far this winter. And it's not just that she is sitting at home with her boring mama either. Sophie Kate gets 3-4 visits a week from the homebound services through our school system. Her teacher and her therapists are coming weekly to work with her and she is making wonderful progress while being in an environment that does not compromise her health.</span><br />
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<span class="Apple-style-span" style="font-size: large;">This would normally be the time where I would tell y'all how mad it makes me when parents send their children to school sick and how my "well" child can't go to school because of the selfishness of some parents. And yes that still makes me sooo mad so don't get me started on that because I'm not doing that today. She is doing so well and is accomplishing so much here and I am just not going to go there today.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Last year was our first experience with homebound school and it came about as a result of a very serious illness that SK battled in December of 2013. So, homebound school last year was very limited for Sophie Kate because she was recovering and was so very weak. This year, however, we took her out of school in November to try and keep her well through the winter. So homebound school this year has looked quite different...she has soared. I even get the benefit of seeing her teachers and therapists work with her and let me just tell y'all that is a privilege. I wish everyone could see how hard these folks work and how much they put into these children and in turn how the children respond. It is nothing short of amazing. </span><br />
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<span class="Apple-style-span" style="font-size: large;">Sophie Kate is using her switch to talk for her, she is making choices and she is staying strong and healthy. So as you can see, my feelings about her homebound status this season have changed a bit when I see how well she is doing. Now you know why my answers to your questions about her might be short and sweet...she's good, she's healthy. It's really not a bad thing that I don't have a lot to say about what's going on here, it's a nice change of pace. </span><br />
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<span class="Apple-style-span" style="font-size: large;">Psalm 71:6, "<i>By You I have been sustained from my birth; You are He who took me from my mother's womb; my praise is continually of You."</i></span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com2tag:blogger.com,1999:blog-1940941295114712545.post-25384249041752015072015-01-12T16:26:00.002-06:002015-01-12T16:26:38.037-06:00Yes<span class="Apple-style-span" style="font-size: large;">Going back to school and getting back to a routine last week was brutal, I'm not going to lie. People are tired and ill-tempered and do not have nice faces when they wake up early around here...seriously I don't know how Chad deals with all of us some days. He is the only one in the house that doesn't wake up mad. Oh not mad at each other, just mad because it's too bright and we like sleep alot. How many more days is it until summer vacation? </span><span class="Apple-style-span" style="font-size: large;">Come on, I know someone knows the answer to this question.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Sophie Kate is doing really well so far this "sick season," as we like to call it. We are keeping her home most of the time, but she has been to some of her oldest brother's basketball games. Do you think having her hold her own bottle of hand sanitizer is taking things a bit too far? Cause I think it sends the perfect message...back off!! No really, I used to have a little stop sign that hooked onto her stroller that said, "Stop, wash your hands before touching me." I don't know what ever happened to it, but I so loved it. Now, we just carry around our own bottle of hand sanitizer. </span><br />
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<span class="Apple-style-span" style="font-size: large;">We are managing well with her hip right now. We did see her Orthopedic surgeon back before Christmas. We have a lot of options on the table concerning her hip situation, ranging from doing nothing to full blown surgery (which really isn't a option in my opinion at this time). We are weighing all the options and are seeking wisdom from the One who knows her best. We pray for direction from God as we navigate this new road with our girl. Please know though that she is doing well and she is healthy and for that we are so thankful. </span><br />
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<span class="Apple-style-span" style="font-size: large;">This sweet girl is so strong and shows me every day what it looks like to be content and joyful in your circumstances. This question was asked in our small groups yesterday..."Would we still love God as much as we say we do if everything fell apart?" I have thought a lot about this very question or a variation of it many times over the past 7+ years. I can honestly answer "yes." Everything has fallen apart, everything I knew, everything I thought I would have...dreams and futures, paths and directions have all changed and the answer is still yes. My beliefs have been challenged to the core and have been rebuilt with clear eyes and a new understanding. My God, my commitment, my love and devotion to Him are no longer based on my circumstances but I didn't fully know that until my circumstances changed. And in the midst of change and unbelievable difficulty and turmoil and the shifting of everything I have ever known...He remained. God remained unchanged and unmoved and steadfast. And while I would give anything for things to be different for Sophie Kate, I never want go back to the person I was before.</span><br />
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<span class="Apple-style-span" style="font-size: large;">Hebrews 13:8, "<i>Jesus Christ is the same yesterday and today and forever.</i>"<i> </i> </span>Amye Johttp://www.blogger.com/profile/04323588617147257640noreply@blogger.com0