tag:blogger.com,1999:blog-35089672919206964892024-03-13T15:11:41.442-07:00God's AliveAwakening to God in BrokennessUnknownnoreply@blogger.comBlogger253125tag:blogger.com,1999:blog-3508967291920696489.post-79210727240193050722021-09-02T18:23:00.002-07:002021-09-02T18:29:12.441-07:00AlexMy daughter Mia and I share a love for historic hotels. We look at every photograph on the wall and read every caption about every famous person who stayed there. We read about when it was built and by whom and why and when it was renovated and all the things. We love the shadow boxes with old keys and ash trays and original promotional materials.
So, as a send-off before she left for college this year, we spent the night at a local nostalgic hotel, The Valley Ho. I know, unfortunate name. In the mid-century, it was a hideaway for Hollywood starlets because the paparazzi “wouldn’t follow them to Scottsdale.” It is the place where Robert Wagner and Natalie Wood got married. She later died mysteriously when she fell off of their boat and drowned. Sounds suspicious. Sorry for the dramatic turn. But, educating Mia on their sordid Wikipedia pages only added to the hotel’s mystique.
While walking to our room, we passed a bright-eyed employee who chirped, “I’m so happy you are here!” We both paused at such a kind greeting and then we responded with something like, “Thank you! We are so glad you are here too!”
Later that night, we sat down for dinner in the hotel restaurant where we found that our happy friend was also the bus boy for our table. He greeted us with another “Hello! I’m so happy you are here tonight!” Again, we were overwhelmed by his friendly greeting and we responded with matched enthusiasm. He then added, “You are such kind people! I’m just so happy that you are here!”
We looked at each other after he left the table. Mia asked, “Do you think he thinks we are celebrities?” We laughed at the thought of being treated so nicely only as a result of mistaken identity. But it made me think about the fact that his extra kindness was so different from the norm that we didn’t have a place for it to actually make sense in our minds. He was just making us feel way too welcome—he MUST’VE thought we were legitimate somebodies.:)
We carried on like this with him all night. When we got up to leave, he gave me an actual hug. I don’t think I’ve ever been hugged by a bus boy. That sealed it for me—I went straight to find the manager of the hotel. I told him about Alex and how the way he treats guests affects the whole atmosphere of the hotel. The manager responded with a nod and a smile and a “Yes, we get that a lot!”
One thing I haven’t yet mentioned is that Alex walks with a noticeable limp. It doesn’t matter. But it does.
It just does matter. I don’t know why because I don’t know his story. Is he sweet because of his limp? Or is he sweet in spite of his limp? I don’t know, but regardless, it does matter because either reason is remarkable to me. One thing I know for sure is that he has been loved well and he knows that he is loved. I know that because it’s spilling over onto the people around him.
Gosh, I wish we were all more like Alex. There are so many things I want to say about him. He’s not focused on his limp, but he’s focused on the people in front of him. He’s the sweetest person in the room. He’s handing out compliments without restraint. But I think the most important thing is this: He changes the atmosphere by just saying, “I’m so glad you are here!” Let's do more of that.
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3508967291920696489.post-45651180434156892892020-10-26T14:15:00.006-07:002020-10-26T14:38:19.089-07:00On Noticing<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUP6-PHddgGNBNEoL21zMMtFdZwLWB82l3nUDYc2Vne-9ngsDX97nRcve6ukl02vbfUvx12rmf-0gMu_7qZsvFt4WZhHHUjwcmAqEvSSZ3svbIvjxrYaCKLcAmGLx2JQTA5TI3PmMVGUJE/s2048/reese+11+bday+2.jpg" style="display: block; padding: 1em 0; text-align: center; "><img alt="" border="0" width="320" data-original-height="1950" data-original-width="2048" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUP6-PHddgGNBNEoL21zMMtFdZwLWB82l3nUDYc2Vne-9ngsDX97nRcve6ukl02vbfUvx12rmf-0gMu_7qZsvFt4WZhHHUjwcmAqEvSSZ3svbIvjxrYaCKLcAmGLx2JQTA5TI3PmMVGUJE/s320/reese+11+bday+2.jpg"/></a></div>Reese is 13 years old today.
Our baby girl is no longer a baby, but pretty much a young lady. She weighs 70 pounds. She’s an adolescent. She prefers High School Musical to My Little Pony. She has a crush on her Physical Therapist’s son, Cody.
When she was a baby, it was easy to hold her. It was easy to take her out in a stroller. People didn’t stare at her when she was a baby. When she was a baby, my back didn’t hurt. Her hip wasn’t out of the socket. She was still eating by mouth.
Before Reese was born, I had never known anyone who had a child like her. I had no frame of reference for parenting a child who required total care. So we have learned about each other over the years. She is so unique in so many ways, even within the diagnosis of Aicardi Syndrome, that her pediatrician often comments, “When it comes to Reese, we just toss out the manual because she’s telling us, ‘you’re just going to have to learn about me.’” And I often think, isn’t that the way we all want to be treated anyway?
The past 13 years have been a long process of learning to how to notice.
Reese doesn’t communicate with words. But I can tell you what she is thinking based upon the position of her eyebrows.
She doesn’t call me Mom, but I know the M sound she makes to tell me, Mom, my feeding tube is disconnected and my clothes are now soaking wet.
She doesn’t greet people with a hello, but I know the sparkle in her eyes and the wide grin on her face that tells me, I really like this person in particular.
She doesn’t tell me what TV shows she likes best, but every morning she looks at her TV and then looks back at me, then back at the TV to ask me, Mom, can I watch a show?
Her belly laughs tell me, my angels are entertaining me (well, I can’t guarantee this one, but I think so).
We have become students of Reese. And we have developed a deep relationship with her spirit by noticing the nuances. By paying attention to the way she communicates. And what a joy it is to know her spirit.
In the process, she has taught me more about God than anyone else. She has taught me how to pay attention to God. What it looks like to live in constant communion. How to notice and how to listen. How to look for what God is doing in the joy and in the pain. She has shown me that God is always at work and is holding an invitation open for me to ask him what he wants me to see.
Matthew 5 says, “Blessed are the pure in spirit, for they shall see God.” I’ve come to recognize that Reese is the essence of pure in spirit. She has not pretense, no ulterior motives. No jealousy, no entitlement. She’s never expressed anger or had a tantrum. She is only pure love. So somehow, I have had the fortune of being grafted into this blessing with her and have been able to see God with her. At the beginning, I felt so sad for Reese. I mourned her for the first year of her life. Now, when I see her, I just think, if only I could be more like her. If only everyone could be more like her. That’s the goal.
I used to think that I needed to know everything and that Reese’s well being was all up to me. If I didn’t do it all right, then she would die. The weight I carried almost buried me.
Today I see her life as a holy experience in which Mario and I take care of Reese with God, and God reveals to us some secrets that we were too blind to see before. The nature of our loving Father. The One who has carried us every single day for 13 years. The one who has whispered in my ear, it is time to call the ambulance. The one who also has whispered, she is OK, just wait. The one who tells me, savor this moment. The one who guides me and tells me, spend your time here and not here.
It’s not what I expected, these 13 years. Not at all. I thought we’d overcome the odds and teach her to walk and talk. I thought God would miraculously heal her and I’d come to her crib and find her standing. I thought for sure her MRI would show a healed brain. I thought I’d be the poster mother for how to prove the doctors wrong. Instead, God invited me into something else. He invited me into the quiet space of noticing and listening and seeing and trusting and dwelling with him. One foot in front of the other. One moment at a time. With Him. And I can honestly say today, on Reese’s 13th birthday, that I would not change a thing. I would choose her over and over.
And thank you, God, for every single day.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3508967291920696489.post-52592453563822027822018-10-23T13:50:00.000-07:002018-10-23T15:28:33.365-07:00Reese's Birthday MeditationEvery year, as Reese’s birthday approaches, I take time to write down some thoughts about her and about the last year. Her birthdays seem sacred to me. Like a gift that came that I maybe wasn’t expecting. It feels like an exhale. We made it. We made it to 11.<br />
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It’s a celebration every year, but it also feels like a deep reflection. I think it flows from gratefulness. A thank you, God, for letting me be her mom for one more year. And it also comes with a weightiness, like I owe it to Reese to learn every lesson and to always be listening and learning. Because I’ve been given so many gifts and so I better be worthy of them. I know, it’s a little psycho.<br />
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There was one lesson that came in the heat of June and has been reverberating ever since. I kind of knew it was Reese’s 11th birthday lesson to me. It’s finally time for me to put it to paper. Even though I may not do it justice, I need to write it down, and hopefully it is a blessing to someone else.<br />
<br />
We have a lemon tree in our yard. Every year, it produces lemons, but this year it went crazy. Like it hit its maturity and the lemons sprouted all over and grew beautiful and plentiful. We ate or gifted every lemon from that tree this summer. Every single one, and there were hundreds. I put organic lemon juice in my water every morning, in my green drink, in tea. I put beautiful shiny lemons in bowls on the counter and in bags to give to friends. The lemons brought me a little joy every single day. That tree.:)<br />
<br />
One day in June, realizing I had picked all of the exterior beautiful fruit, I spotted the lemon I wanted. It was tucked back closer to the trunk. I carefully navigated my hand through thorns and leaves and grabbed that bulbous beauty. It came off the vine like butter, and I held it in admiration. It was twice the size of the others with thick beautiful skin. And I said to that lemon, “Wow. You’ve been protected under those leaves, defended by those thorns all summer. And look at you. You have grown huge and so beautiful.”<br />
And I promise, I heard God say to me, And that is what I require of you, Kerry.<br />
<br />
<br />
It was one of those really powerful moments. Like where I know I will remember this for a long time. And I want to flesh it out and know what he meant and lean into it and really get it. <br />
<br />
Here’s what He’s been teaching me since that day:<br />
<br />
What I want for you, my darling, is to sit with me and keep company with me. I want you to let me shield you. I want to cover you and care for you. I want you to learn from me. I want you to hide your life in mine, and I want you to know that all of the consequences are on Me. Your life is mine, so everything that happens to you is my responsibility. This is where your growth happens. This is where you beauty resides. Keep company with me. That’s what I require of you.<br />
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It feels like a lot of love and freedom. It’s very easy for me to fall into the the thinking, “If I don’t do this, then…”. It can be simple, like, “If I don’t teach my kids to do their chores with a happy heart, then they will be selfish jerks and no one will want to live with them.” And it can go to “If I don’t protect my girls and know everything about their lives, then they will get their hearts broken.” And I often go to “If I don’t research and read and figure out everything related to Reese, then she will die.” I go there a lot. This is a hard way to live. This is a hard place to be everyday. And what I’m learning is, it doesn’t have to be this way. I don’t have to live like this. Thinking like this and living like this are choices that I am making. Like it’s all up to me and if I fail, then Reese will die. I don’t have to allow that thinking to run rampant, and I don’t want to. God is not requiring me to take on the full weight of life and all of the consequences of it. He is requiring me to keep company with him and learn from him. And to allow him the honor of being in charge of the consequences. He says to me, hand it over. Let it be my responsibility. It’s too heavy for you, and I told you that I won’t lay anything heavy or ill-fitting on you. Keep company with me and learn from me and I’ll teach you to live freely and lightly.<br />
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I don’t know about you, but to me “freely and lightly” are some of the most beautiful words. That kind of life is possible. And I want it. This is my rhythm. Resting close to the vine, under the leaves, protected and cared for. <br />
<br />
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“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—-watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and I’ll teach you to live freely and lightly.” Matthew 11:28<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitwknOOENPsbUyfqvNQ-9Si1CkTLkfQYfGc0wz3PSIGvD7INol05HycJAiGeu1xXcEfIgc1y6s6ZbMLqbdsqBa_dMZ98PsKtlXoBb9jCnY5Qpxu1_4NoAERZyq1bxtPUsUk5Tv-ZaJGRpN/s1600/reese+11.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitwknOOENPsbUyfqvNQ-9Si1CkTLkfQYfGc0wz3PSIGvD7INol05HycJAiGeu1xXcEfIgc1y6s6ZbMLqbdsqBa_dMZ98PsKtlXoBb9jCnY5Qpxu1_4NoAERZyq1bxtPUsUk5Tv-ZaJGRpN/s320/reese+11.jpg" width="241" height="320" data-original-width="1082" data-original-height="1438" /></a>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3508967291920696489.post-76906822775001005142017-07-01T18:45:00.001-07:002017-07-02T12:27:38.296-07:00Some ramblings about books and my biggest fearSo maybe this will be remembered as the summer of reading. I recently finished “Draw the Circle.” You’d like it. (It's predecessor is The Circle Maker). It's about praying for impossible things and that's always a favorite topic of mine. Last week, while on vacation, I finished “Blue Like Jazz." Faith chose it for our summer book club from a list of books teenagers should read before they go to college. Awesome. Because I'd been meaning to read that book for years. I don’t usually read in the car because I get sick, but this time I was able to stomach it on our drive to California, which was like a double gift. Because I was laughing out loud at his storytelling and then I had this captive audience in the car to whom I was re-reading portions out loud. Oh yes, they loved that. <br />
<br />
We spent a day at Universal Studios, which was a blast but the rides are mostly the scary kind. I told my family that I am way too old to do anything I don’t want to do at an amusement park. So they let me sit with my book in a shady spot and read while they went on the scary ones. Mia noticed, “Mom, you’ve only been on two rides. It’s so sad.” I mean, I went on Jurassic Park and Minions. Minions was too much for me, so that pretty much sums up my ride tolerance. <br />
<br />
“No no, this is exactly where I want to be, honey. Reading. Almost uninterrupted.”<br />
<br />
We had left Reese back in Phoenix at Ryan House, which is a respite house for families with complicated children. I know that’s not the official description, but she stayed behind with her nurses, mostly because we cannot take her seizure medicine across state lines into California. It’s a long story, and the laws are stupid and the pharma industry makes me angry, so don’t get me started. But anyway, yes, it is very hard for us to leave her. Tears spilled down my face when I said goodbye. As hard as that is, it is probably healthy for me to take a break from being a caregiver. It took Mario and me a couple days before we completely relaxed. Because when you are a full-time caregiver, there is always something to be done. It is always time for something: food, meds, bathroom, therapy, water, repositioning. Ordering supplies, calling doctors. Always something. So I guess I'm not always conscious of it, but my mind is always thinking of what's next. <br />
When I turned that part of my brain off and just sat and read my book, it felt really weird and good. That was what I really wanted and needed to do. I finished Blue Like Jazz between the drive and the Universal Studios shady spots. It was really good. If you’ve read it, I’d love to discuss it with you. I’ve heard it’s controversial and I’m not sure why. It’s the guy’s life story. I mean, can’t we let him have his story?:) <br />
<br />
Mia chose for us to read “Let’s Be Real” by Natasha Bure for our book club. (In case you're confused, I started weekly book club meetings just with my high school girls and me. We read and discuss.) I’ve only just begun this book, but I’m pretty sure I’m not the target market for it. But Mia is and she’s loving it. <br />
<br />
This week I’m reading “Nothing to Prove” by Jennie Allen. All by myself. Here’s the thing about books and me. I love to read, but I never allow myself to read just for fun. It’s like I have to be learning and growing and being inspired or else I feel like I’m wasting time and I feel guilty. Am I the only one? Maybe it’s part of the caregiver mentality. Too much to do to waste time. If you’re a therapist and you know what’s wrong with me, feel free to comment. <br />
<br />
In Nothing to Prove, the author asked me (well not me personally, but the reader. You get it.) to write down answers to these questions at the end of a chapter called “No Longer Afraid”:<br />
<br />
1. What is the worst thing that could happen?<br />
2. So what if that comes true?<br />
3. So what happens because of that?<br />
4. So what happens because of that?<br />
When you reach the end of the ‘so what happens,’ there lies your greatest fear, the one that keeps you in bondage. When you can name that, consider this: <br />
5. Would God be enough for your greatest fear?<br />
<br />
It’s not hard for me to come up with the answers to those questions.<br />
1. We lose Reese<br />
2. My heart would be broken<br />
3. I would miss her and I'm not sure I can handle the pain<br />
4. I would be sad for the rest of my life, and it would be hard for me to be anything but sad.<br />
So there’s my biggest fear. <br />
<br />
I know every parent fears losing a child. It’s the worst thing we can imagine. And I know that at any moment I could lose any of my children. But it’s different when doctors tell you that you will lose <i>this</i> child. It’s not a matter of if, but when. It’s a different kind of fear. It’s a day-to-day dealing with the fact that I love this child with every part of me but there is a very real possibility that I may have to let go. <br />
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I held her a little longer last night. Sometimes I hold her and smell her and think <i>I never want to forget this moment</i>. Mario asked why I was crying and laughing with her at the same time. It’s because I know that I love her so much that it actually hurts. Sometimes it’s a painful place to live—-between loving so deeply and knowing that it could end. But the beautiful part of it is that I know I’ve experienced a deep love. The kind that I think can only be found in brokenness, in mourning, in fighting for every little thing.<br />
<br />
So I spent yesterday asking God, “Will you be enough? Will I be OK if my worst fear is realized?” <br />
<br />
And the answer was yes. God reminded me how he has been enough for me, living with Reese’s terminal diagnosis, and He will be enough for me every day, no matter what comes. If I let Him. That’s been the key for me. He is enough for me when I allow him to be. When I ask Him to be. If I try to carry my pain on my own, it’s messy and ugly. But I have to believe that no matter what comes my way, He will be enough and He can be trusted. I have to believe that. Our lives roll along and sometimes we get a curve ball. That curve ball doesn't define us. But what we do next can. In my experience, I've realized that I choose whether I trust God in each situation. I choose trust or fear. I get to choose my perspective--look for the goodness, or stay worried and angry. But the even cooler part is that it is God who makes our hardest things <i>good</i>. Not just OK and smoothed over, but He promised us that he would cause all things to work together for our <i>good</i> if we love him and we are called according to his purpose. He makes all those curve balls <i>good</i> for us. If we allow it. I think that's why he added the qualifier "to those who love him and are called according to his purpose." Because we all know that we can choose bitterness and anger and worry, which are places where it's really hard for beautiful things to grow. <br />
<br />
I've noticed something different about people who truly trust God. Their core identity is different from everyone else in the world. They are free to live and love and be in a way that makes people pay attention. When you meet someone like that, you know. I remember when I was a teenager, I was flying with my parents. The plane was dropping and shifting and bouncing all over the sky. I was white-knuckling the arm rests and reminding myself to breathe. My mom was reading a book in total peace. I asked her, "How can you not be scared, Mom?" She answered in a totally calm voice, "I trust God." I responded, "But what if we die?!?"<br />
"I trust God with that too."<br />
She didn't give me stats about plane safety or weather conditions or probabilities. It was just that she trusted God with our lives. I will never forget that. Her life is defined by trusting God. It is the core of who she is, so she doesn't worry about life and death. What a revolutionary way to live.<br />
<br />
And you know what the truth is? Just because some doctors say Reese will have a short life does not make it so. The power of life and death is in God’s hands. Reese could grow up to be an old woman, and I don’t want to look back on my life and say, “Well, I sure wasted a lot of good days fearing death.” That would be a waste of a gift. That would be a stain on a miracle. I don’t want to do that. What does life look like, then, when we remove even our biggest fears from the equation? If fear is no longer holding us in bondage, then how would our lives look different? It seems to me, it is then that God sets us totally free. I know it's possible, but it has to be a lifelong journey toward fully trusting God to be enough. Day by day, moment by moment, thought by thought. No more fear. <br />
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-3508967291920696489.post-5104442467635123392017-04-24T10:56:00.003-07:002017-04-24T12:05:42.188-07:00Hummingbirds and Parenting<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsf_l2H0nkWlKRQmvWTn7ZfKZo5glxh44sMjrMpeC1qRMH_U2P350IvwThRLnT9OVQXdf4jFDF4I9fjfdQiIabVJWj-eEnNKOMiYTrMoC3f7QwrPnM-jrM3f-CNPSx1608uZsCtSyAnkw-/s1600/hummingbird+nes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsf_l2H0nkWlKRQmvWTn7ZfKZo5glxh44sMjrMpeC1qRMH_U2P350IvwThRLnT9OVQXdf4jFDF4I9fjfdQiIabVJWj-eEnNKOMiYTrMoC3f7QwrPnM-jrM3f-CNPSx1608uZsCtSyAnkw-/s320/hummingbird+nes.jpg" width="320" height="168" /></a></div><br />
Yesterday was one of those Aicardi Syndrome mom days. I couldn’t really think or do. Whenever there is one in our Aicardi family who is clinging to life, it kind of paralyzes me. Knocks the wind out. Yesterday was no different, as we got the news that our friends are taking their daughter home on hospice to make the transition to heaven. It weighed heavy.<br />
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I escaped to a comfy outside spot. It was a beautiful day to pray and read and listen to the wind and the song of the mockingbird. <br />
<br />
I read the story of George Washington Carver. Such a fascinating man. Born into slavery, he became one of the most influential scientific minds in American history. He discovered over 300 uses for the peanut and virtually saved the southern farming economy at the turn of the century. He had a habit of waking at 4:00 AM to pray. He would ask God to reveal mysteries of creation. And He would pray around this verse:<br />
Job 12:7-9<br />
“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you.” And God revealed to him why he made the peanut. Fascinating!<br />
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Almost immediately after I read that verse, a hummingbird buzzed in front of me. It was as if she was looking at me, almost making eye contact. I was fascinated and delighted. She paused for a moment on the tip of the agave plant in front of me. I love to see them in stillness. I had considered it sort of an anomaly in the life of the hummingbird. She then flew up to a perch in the tree beside me. And she sat for 5 minutes in stillness. I asked God to allow this bird to teach me, as Job had suggested. She sat. She was still. I always see hummingirds buzzing and working and moving, but she took time to be still. And I need to be still. Specifically in the presence of God. As Mark Batterson says, “Get into God’s presence. That is the solution to every problem. That is the answer to every question…the Holy Spirit will reveal things that can only be discovered in the presence of God.” So true. I decided that was the hummingbird’s lesson for me.<br />
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She flew off. But then she returned a minute later. This time, she seemed to be spreading herself out on a tiny nest. Could it be? I went inside to google a picture of a hummingbird nest, and there it was. It had the circumference of a quarter, and the caption said few people ever see them because they are so beautifully camouflaged. They are carefully knit together with soft petals, leaves and silk from the mama. A soft nest for two tiny bean-sized eggs. I got to watch her in action, and I felt like God was speaking to me again. This mama. She’s doing everything she can to take care of her children. She is doing her best. She is doing her part. And then she has to rely on me to do my part.<br />
<br />
Parenting can be so hard. Parenting toddlers is hard. Parenting kids with struggles (which is all of them at one time or another) is hard. Parenting teenage girls is hard. Parenting a child with a terminal condition is really hard too. That’s no surprise, I’m sure. But we are not alone. We are in a partnership with the One who created them. We do our part, and then we can pray and trust and pray and trust and allow God to work out some of the heavy lifting on his end. We can pray for those impossible things and then wait in stillness. In peace. I told my girls about my encounter with the hummingbird. Olivia asked, “Do you think hummingbirds pray?” Probably.:) She sure knows a lot about parenting and I’m pretty sure I know who taught her.<br />
<br />
I was hurting. I went to sit with God. I prayed for our friends. I read his Word. His bird came to say hello. And then she taught me about God. Mind blown for the day.<br />
<br />
“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you. Which of all these does not know that the hand of the Lord has done this? In his hand is the life of every creature and the breath of all mankind.”<br />
Job 12:7-10<br />
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Maybe you need to let God to do some of the heavy lifting today. <br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3508967291920696489.post-3847519229956972752017-02-24T10:38:00.000-08:002017-02-25T22:28:36.619-08:00Lessons from the ERIt was Valentine’s Day. Mario and I had a nurse scheduled to be with Reese, and he and I were going to go out for a lover's breakfast. Ha ha. Just kidding, I hate that word, "lover." But we ended up in the Emergency Room. Reese was diagnosed with pneumonia. We looked at each other with that familiar disappointment. Our plans changed suddenly by our little, fragile one.<br />
<br />
We chatted with our nurse. “These weren’t our original Valentine’s plans.”<br />
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She responded, “You are here because you love her. And that’s what Valentine’s Day is all about.”<br />
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Yeah, girl. Yeah. I loved that she said that. I felt seen.<br />
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Before we left that day, she said, “I can tell you guys take great care of her.”<br />
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We felt seen. In fact, that is one of the most meaningful compliments I can receive. I’m not exactly sure why. Maybe a psychologist can answer that. It’s not the same as, “You’re a great mom.” It’s deeper. It’s a phrase that implies, I see you. I see the work you are doing and it matters, mom. I dunno. It feels really good to me.<br />
<br />
We ended up in the ER again with Reese 5 days later. She seemed to take a step backward in her recovery. It was also Olivia’s 13th birthday, so I tried to convince myself it would be a quick stop and we would be home to celebrate in a hurry. Our nurse on this day commented on how siblings of kids like Reese learn to be very others-centered because of circumstances like this. Thanks for seeing Olivia.<br />
<br />
We ended up staying for 8 hours. Weekends in the ER seem to move a little slower. Our room was situated right by the parking lot, where the ambulances pulled up and unloaded children. I tried not look. But I did notice that a Sheriff’s vehicle sat outside our window with its lights flashing. Two things I’ve learned over the years: Pediatric ER nurses are some of my favorite people and the ER can be a scene for drama. As we were packing up to leave, I asked the nurse about the Sheriff. She closed the door and told me in a hushed tone, “We had a drowning today.”<br />
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My heart dropped. I caught my breath. We walked toward the exit of the Emergency Room, and we passed the family being escorted in by two security guards. The woman who I assumed was the mom was still in her pajamas and her face told the story. The extended family surrounded her. One of the men locked eyes with me. I gave the smallest smile I could give in an effort to say, “I see you.” He then looked at Reese longer than a moment. In my mind, I imagined he was thinking, it’s not fair that you get to leave. <br />
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It’s taken me several days to be able to talk about this. In some way I felt like I was a part of their story. We were there. We were there when he arrived. We were there when he was pronounced dead. We were there as the family was being escorted in. We exchanged glances. It hurt to be a part of their story. <br />
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I think one of the hardest parts of being in a crisis is seeing the rest of the world carrying on while you are screaming, and feeling as if nobody can hear you. I remember the days after Reese was diagnosed with Aicardi Syndrome, seeing kids riding bikes and playing and people smiling and taking out the trash. I wanted the world to stop for a moment, but it wouldn’t. <br />
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People need to be seen. People need more love. There is always room for more of that. Pick your head up and look around. Who needs to be seen and acknowledged and loved a little more? There are probably people in my life right now who are screaming to be seen. I’m asking God to show me who they are. And to have enough care and love to do something about it. <br />
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One family walking out the door to go celebrate a birthday while another walked in to see their child for the last time. These are the things that are so hard for me to reconcile, and the only answer I hear from God is this: LOVE MORE. It’s actually the answer to almost everything. More love. And then a little more. I will probably never see this family again. But I can pray for them. And I can remember them, remember their faces, and allow them to soften my heart toward others who need more love, need a word of encouragement, need people who care, who need to be seen.Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-3508967291920696489.post-24520229453770527302017-01-14T07:18:00.003-08:002017-01-15T14:43:27.894-08:00Look for the ShimmerThe other night I was putting Reese to bed. She was gazing into my soul, and I into hers. We laughed and we hugged. It’s my favorite thing. I held her tight and begged God not to ever take her away. <br />
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I used to cry out to God and ask why. Why did you allow her to have Aicardi Syndrome and seizures and so many struggles. Why did you allow me to have a child who would receive such a diagnosis. Why, God? I just need to know why. If I know why, then I can move forward.<br />
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People would give me answers. You must have sinned. Or maybe Mario. Did you have an affair? Or maybe your ancestors sinned. Our doctor said it was bad luck. Some would say, “It’s because of the fall. Sin entered the world at the fall of man. We live in a broken world, you know.” This never satisfied me. Because why doesn’t your child have Aicardi Syndrome then.<br />
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That night I felt the fullness of joy that Reese carries with her, and I was thinking of that pat answer. And I say no. no. She is so much more than the result of the fall. She is not merely the consequence of the sin of Adam and Eve. She is a beautifully thought out, created daughter of God, who carries with her something. Something I cannot even define, but can only be described as a foreshadowing of what heaven will be like. When love is totally pure. When joy is not affected by daily circumstances. When relationships have all of the good stuff and none of the downside. She has it. She is so much more than what you describe. Please stop saying those things. John 9 provides a perfect answer to me--it is all for the glory of God. To point people back to God. The truth is none of us knows all of the whys behind Aicardi Syndrome, but I can tell you that I don’t care why anymore. The why doesn't matter because the what is so beautiful to me.<br />
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The next morning, I opened a devotional (Savor, by Niequist) and read this:<br />
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<i>“When you realize that the story of your life could be told a thousand different ways, that you could tell it as a tragedy, but you choose to call it an epic, that’s when you start to learn what celebration is. When what you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game, once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s a good, rich place. That’s where the things that looked like curses start to stand up and shimmer and dance, and you realize that they may have been blessings all along. Or maybe not. Maybe they were curses, but the force of your belief and hope and desperate love for life has brought a blessing from a curse, like water from a stone, like life from a tomb, like the story of God over and over.”<br />
</i><br />
And then it ended with a question…What events in your past felt like curses and turned out to be blessings?<br />
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Ummmm I have one.<br />
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Sometimes I hear how people talk about their children as such a sad story and I think to myself, I see it so differently. But I think that’s the point. We get to choose how we see it. When we see our children as beautiful and focus on the celebration of those unique beauties, that’s when those things that people may call curses, or the result of the fall, or even those things that were intended to harm us, those things stand up and shimmer and God says, oh no way. I love her. I meant this for good. Shall we celebrate?<br />
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We get to choose how we see things. One of the greatest lessons Reese has taught me is to ask God, “Will you show me how you see this person? Let me see what you see.” Oh man, try it. The world changes.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3508967291920696489.post-37622615611961902722016-12-21T17:37:00.000-08:002016-12-27T08:00:43.588-08:00Christmas 2016<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjVm7D26iXWg1YQaD2lfIHgyt_lOq0eNzHFZ-WMo83oTNGz6tkFi_hMcsfZ3ux6jeOK4VRPXdSwOFlAVkBvvtzqT3ZvJ-crVtqyDY8PfMcfHLwX7Rusa80WsCCwmc23mR32BNVuRCr4UNy/s1600/family+2016+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjVm7D26iXWg1YQaD2lfIHgyt_lOq0eNzHFZ-WMo83oTNGz6tkFi_hMcsfZ3ux6jeOK4VRPXdSwOFlAVkBvvtzqT3ZvJ-crVtqyDY8PfMcfHLwX7Rusa80WsCCwmc23mR32BNVuRCr4UNy/s400/family+2016+1.jpg" width="400" height="399" /></a></div>Merry Christmas, Friends!<br />
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I have so many things to tell you! No card again this year, but here's a blog. Maybe next year? We made it through 2016, friends. We made it together. <i>Hopefully</i> we are all still friends. That's a joke--of course we are!!<br />
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Let's start with our youngest. Reese turned 9. She had a banner year. A banner year! Not one respiratory illness in 2016. We had one hospital stop, as the altitude and allergy combo in Flagstaff was not Reese's <i>favorite</i> thing. One ambulance ride down to Phoenix, no biggie. But other than that, she's been HEALTHY! And Happy! And laughing and communicating and loving because that's what she does best. Cannabis oil (CBD) has reduced her seizures by 70%, so whenever you hear people talk about Medical Marijuana as a "charade", etc., please tell them about the sweetest girl you've ever known. We have to be her voice! I was just thinking today about all of the love Reese has brought into our lives--first and foremost, just in being who she is. She's 100% love to us. She also attracts love to our home. Her therapists and nurses and teachers and doctors and fellow special needs families. We are surrounded by a lot of loving people, and as one friend recently commented, she has increased our capacity to love. I loved that. So to you, I want to say, if you are dealing with something hard right now, just wait. Stay close to God and know that He can make it <i>beautiful</i>. Not just OK, but actually beautiful. Just wait and watch and allow him to <i>increase your capacity to give and receive love.</i><br />
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Olivia. 12. Sweet little thing. She surprised all of us this year with her performance in Elf the Musical. She told me her audition was terrible. She said was so nervous and awkward. And we believed her! Then they gave her a lead role and she shocked us with her ability and confidence. It was a joy to watch her because of all of those things. She loves music, her friends, and animals, and being creative, and she started a "slime" business with her buddy. If you're wondering what that is, you can follow them on Instagram at ThoseSlimeGirls. Little entrepreneurs, those two. She's a joy to live with--God speaks wisdom through her to me all the time. This morning she told me, "I was praying before I went to sleep, and then I said Amen and I woke up and it was morning!" Special kid. It's really awesome to be her mom.<br />
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Mia. 15. Full of life. Everything about Mia is big. Big voice, Big beauty, Big personality, Big heart. She's fun, independent, witty, smart and loyal and sometimes a little crazy.:) She loves her friends and music and singing loud for all to hear and softball and good books and Reese. She's her sister's keeper, which is one of my favorite things about her. She loves her youth group too--yea for youth group! And she entered her first voice competition this year, where she received an Honorable Mention from the judges. I was so proud of her! Hooray for courage! She can't decide if she wants to be a NICU nurse, an Occupational Therapist, work on Broadway, or pursue softball, but whichever way, she's going big.:)<br />
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Faith. 17. Tender-hearted one. Faith is full time at Shadow Mountain High School this year. First time in public school, which she described as "The best thing that has happened because I've learned how to really trust God day by day.:)" She officially signed to play golf at the University of Montana in November. She will be leaving us in August to go off and turn into an adult or something. We are so proud of her and she's <i> so</i> excited, so we are all excited. She's a sweet spirit, family girl...who's moving far away to Montana. But because God describes himself as one who does "more than we can ask or imagine," I'm not surprised that one of her very dearest life-long friends may be joining her and rooming with her. I mean c'mon. More than we could ask or imagine. She loves the Lord, loves to engage in important conversations, she's funny and fun, and she's so beautiful inside and out. I'm going to miss her like crazy, but we have plans to FaceTime every night during dinner, so I'm thanking God for technology. Right?? <br />
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Mario. Let me tell you a story. The other day I met a grandpa who lives in Texas. He told me he remembered Mario from Mia's 8th grade graduation (His granddaughter was in her class). He said Mario prayed at the end of the ceremony, and he approached Mario afterward and said, "You pray like you know Him." Then he said, "I'll never forget what he told me next. When I asked him about what he does for a living, he told me that his mission is to make sure everyone knows about Jesus and then to get the heck out of here. I've never forgotten that and I tell people about him all the time." That pretty much sums up Mario. He knows God and He really loves Him. And He wants everyone else to know Him too. So he's dedicated his life to make sure that happens. (He runs a non-profit called Death2Life Revolution, in case you don't know: d2lrev.com) And the truth is, when doctors tell you that your child will beat you to heaven, you really keep your mind and heart there. Some of you will totally get that. But then again, Jesus told us to set our minds on things above, not on things here on earth, so it all makes sense anyway. He's always been Faith's number one fan, and now he will be the Griz Nation's number one fan--get ready for Mario, Montana!<br />
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Kerry. God has moved things around in such a way that I <i>have</i> to accept nursing help. Our favorite nurse left for a hospital job earlier this year, but now she has decided to come back. I <i>told</i> you Reese attracts love! She can only do so if she works more hours. So I have lots of help and it's such a good thing. But it does kinda make me laugh to see how God made it happen because I hadn't always accepted it. After dreaming and researching for the last year, I launched an online clothing boutique in November called Ellie & Adair: ellieandadair.com, and it has been SO MUCH FUN. It made me realize that God IS so much fun. Matthew 11:30 (MSG) says "Walk with me and work with me--watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly." He's taught me that I need to actually <i>enjoy</i> my life. I can choose to walk in duty and stress and to-dos, or I can just enjoy my people and my Savior. I don't know if you've done that your whole life, but I don't think I have. I will have 3 teenage girls in February. Of course that comes with some challenges, but one thing that has been really delightful is watching them turn into the type of people I would choose as my friends. I didn't expect that.:)<br />
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We love you so much--you, the one reading this. As I write this and think of you, I feel LOVE for you and from you. YOU have unique gifts that no one else has--really, NO ONE. Some people may have similar gifts, but no one has the combination of gifts that you do and no one ever will. Consider it. Don't ever ever lose sight of that, and know that you are LOVED by God (so loved--take a moment to ask him to show it to you) and by us, and you are needed and valued and YOU are so special. It's true. We have lost friends to suicide this year. The enemy of our souls is a liar, and he doesn't want you to believe the truth about who you are. I hope you know that you matter and the world would not be the same without you. And I hope you know that you can always talk to us or someone at www.d2lrev.com if you want to be anonymous. I just had to make sure you heard that!<br />
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Now to another really important part...<br />
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I love this translation of Isaiah 9 <br />
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For a child has been born—for us! (That's Jesus)<br />
the gift of a son—for us!<br />
He’ll take over<br />
the running of the world. (You know how you're worried about the government? That's on Jesus)<br />
His names will be: Amazing Counselor, (I need one of those)<br />
Strong God, (Yes, Jesus is God)<br />
Eternal Father, (He will never leave us and cares for us like a good father does his own children)<br />
Prince of Wholeness. (He makes us <i>whole</i>)<br />
His ruling authority will grow,<br />
and <b>there’ll be no limits to the wholeness he brings.</b> <br />
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No limit to the wholeness he brings! That is the good news of Christmas. May you experience that "no limits" kind of wholeness this year. We love you.:)<br />
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Merry Christmas!<br />
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Love, Kerry, Mario, Faith, Mia, Olivia, and Reese Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3508967291920696489.post-16777600020506550032016-10-25T08:50:00.001-07:002016-10-25T12:32:53.237-07:00Something Terrible or Something Beautiful? Reese is 9 years old today!!! Happy happy happy birthday to my sweet baby girl!<br />
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I always write something on her birthday.<br />
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Here’s what’s on my mind today.<br />
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A friend sent me a message the other day. She mentioned a couple things: she appreciates my honesty in sharing my struggle in raising a child with special needs, and she appreciates my obvious decision to not weigh in on politics this year. Because I don’t like to speak publicly about politics, she asked where I stand on the subject of abortion. I don’t know her political stance, but she got my attention. Lest you misunderstand, I found it to be very loving that she asked instead of assuming or lecturing. Asking questions is a good way to start conversations, btw.<br />
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In the presidential debate last week, when asked about abortion, one of the candidates answered this way:<br />
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“I have met with women who have, toward the end of their pregnancy, get the worst news one can get, that their health is in jeopardy if they continue to carry to term. <b>Or that something terrible has happened or just been discovered about the pregnancy.</b> I do not think the United States government should be stepping in and making those most personal of decisions.”<br />
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It stung. I hear “something terrible has just been discovered about the pregnancy.” And the implication is that no one would ever want that kind of baby. And we all agree that it would be OK to take care of that so no one has to live with or deal with that kind of terrible thing, right? It felt like half of the world was nodding.<br />
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I heard it. I <i>was</i> that mom who discovered that “something terrible” kind of news while she was pregnant. At 14 weeks to be exact. And I lived in uncertainty for 24 more weeks. It was painful. But that pain was not wasted. It was all used to teach me to trust and to keep company with God.<br />
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When my friend asked me about my position, part of me was horrified that maybe, in being honest about my struggles, I have given the impression that I wished abortion had been an option for me.<br />
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If there is one thing I want the world to know, it is this. I love raising Reese. I hope you know how much we love and adore her. I hope you see our joy and the way her sisters adore her. I love everything about her, and I love what she has taught us. Raising a child with special needs is not what I expected it to be. Of course, it is hard sometimes. But I would not change it. I would do it all over again because it has been the most beautiful experience of my life. I realize that may be hard to understand and I concede that it is sort of a mystery. <br />
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Because of Reese, some of Jesus’ words finally make sense to me. Some words that just didn’t fit in my world before she was in it.<br />
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Like “Blessed are the poor in spirit, for theirs is the kingdom of God.” In other words, I hear Jesus saying, you will be happy when you are at the end of your rope. When you are at the bottom and you have nothing left. Because it’s then that I will take care of you, because no one else can, and you will really know me. And we will develop a friendship and an intimacy that you have not known. And that is what I <i>really desire</i> for you. That is heaven on earth. That is what Reese has brought me.<br />
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Or, “Blessed are the pure in heart, for they shall see God.” Or in other words, you know those really pure-hearted people? The ones with zero pretense? The totally uninhibited ones? The ones with pure motives, who love unconditionally and don’t know how to love otherwise. Have you ever wondered why they are so happy? Those are the ones who really see me at work around them. Those are the ones who have a very special relationship with me. Those are the ones who truly know me. And we get to live with one of those people.<br />
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This is not a post about abortion. But I hate abortion. When I heard that discussion in the debate, I was sad for us, because it felt like the world was collectively devaluing Reese. But I was also sad for all of the mamas and daddies who have missed out. They missed out on the precious, depth of life that was intended for them.<br />
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Loving Reese has been joy, fulfillment, depth, trust, soul-searching. Getting real, digging deep, finding out who we are, loving unconditionally, being loved unconditionally, seeing all people differently. Learning from a non-verbal child how to be content, how to love what is, and how to really know God.<br />
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I cannot even tell you the wonder and love she has given me. And I know she has taught me to love fully and be loved fully, by our Creator and by each other, and to know that that is enough. Her 9 years have been something very very beautiful.<br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3508967291920696489.post-36808918077786944682016-10-21T10:59:00.003-07:002016-10-21T11:13:14.385-07:00She's turning 9 and I just had a few things spill out of my soulWe are approaching Reese’s 9th birthday. They told us she would have 7, so we’re pretty dang happy about 9. But each birthday brings a tidal wave of feelings with it. Memories of nine years flash like a highlight reel, each bringing with it its own, tailor-made emotion. Some are sweet and deep and beautiful. Some are gut wrenching. <br />
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But the most important thing I have to say about raising a child with a serious medical condition. With a short life expectancy. With global delays. With severe disabilities. What I have to say is that <i>this isn’t what I expected</i>. I expected sadness, and instead I found happiness that I did not know was possible. I expected depression, and instead I found a deep relationship with God. I expected a horrible life, and instead I uncovered the life I was meant for. A sacred, different life. Sometimes exhausting. Sometimes stressful, but still sacred. I expected to feel very sorry for my daughter, but instead I am fascinated by her peace and contentedness and unconditional love.<br />
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The other thing I want to say may only apply to me. I assume it is true for all parents like me, but I’m not certain. When I was told that Reese had Aicardi Syndrome, and I Googled it, and I saw the words “7 years” in what seemed to be flashing red lights, it felt like a limb had been ripped from my body. The pain was so excruciating, I didn’t think I could recover. After a few years, I was surprised by how much I had healed, but that wound was still there. It was scabbed over, much more comfortable to live with, but I know it will always be there. It’s not a painful type of wound anymore but a very sensitive one. Not one that I despise, but one I am aware of. In the same way the Apostle Paul said he had a “thorn in his flesh,” my wound keeps me tender, and keeps me close to God.<br />
I can keep it bandaged, carefully maneuvering around corners, so I don’t bump it. But it is easy for that wound to open. When someone asks me about her and truly wants to hear the answer, when the doctors talk about her, when I watch her sleep, the wound opens and sometimes bleeds a little. Not because I’m sad anymore. But I think because every day of her life, whether it is conscious or not, the thought is always in the back of my mind, could it be today? It is always there, the real possibility. That is the wound.<br />
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And every birthday brings with it the question, will there be another?<br />
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A friend once said, “There’s more to you than just Reese.” <br />
Your reaction to that statement will be based upon your perspective. You may think, that’s true. From my perspective, for Mario and me, it was painful. Because most people don’t understand that we are walking around with a limb torn off. We’ve learned to overcome and to function without that limb, with that wound, but it is hard to be bothered by the things that used to bother us when that wound is there. It’s kinda like me walking up to your car after you’ve been in an accident and asking, "what’s for dinner?" You can’t really think about dinner when you’re dealing with that bleeding forehead. So when you ask me how you can pray for me, the first thing that comes to mind is the wound. It’s just always at the forefront. And to imply that you’re done hearing about it makes me feel unseen.<br />
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I know I have changed over 9 years. I know I feel things very deeply. I know I cry easily. But not because I’m sad. Because I’ve discovered a depth of my soul that feels things way, way down there. Some would say I’m intense. Some friends quietly bowed out of my life. That’s OK because others entered. I hope you understand, I’ve had to learn to live with an open wound. And for me, it is not the pain of the disability. Because I have found depth and beauty and so much love in disability. But the pain comes in the anticipation of losing her. <br />
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Reese has brought me more than there are words to explain. I love everything about her. I wouldn’t change her and I would do it all over again if given the choice. She has taught me to love unconditionally. <i>To love what is.</i> And she’s taught me what it looks like to be loved and to stop hustling for someone else’s idea of worth and acceptance. And I’ve learned from her that knowing you are loved no matter what, no matter how you act or what you do or don’t do, is really what every human needs and desires. And it is what releases true freedom in the human soul. <br />
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So in honor of Reese’s 9th birthday, would you take a moment to ask God to show you who you are requiring to act, behave, believe a certain way before you will love them? And then respond by <i>loving what is</i>. Maybe ask them to forgive you. Oh, was that too much?:) Then ask God to show you <b>how much He loves you</b>. Listen, watch, and then believe Him. It may be revealed in a thought or in an action done by someone else. But it is from Him. Because I know that every good and perfect gift is from Him. Reese didn’t tell me that’s what she wants for her birthday, but I’m pretty sure that would make her really happy because she’s unselfish like that. Happy birthday, my darling, delightful nine-year-old girl. <br />
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And by the way…Here’s how the Message translates the words of Paul. I looked this up after I wrote this blog:<br />
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2 Corinthians 12:7-10<br />
“…I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, <br />
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<i>My grace is enough; it’s all you need. My strength comes into its own in your weakness.<br />
</i><br />
Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over. And so the weaker I get, the stronger I become.”<br />
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3508967291920696489.post-18554787817392735242016-06-17T14:07:00.001-07:002016-06-20T10:48:00.904-07:00I Do Not Have LeukemiaThis story begins on the bathroom floor. I was the kind of sick where I slept on the tile and didn’t care. I had determined I was dying of Listeria poisoning from the Caprese Salad I had eaten at the fancy Italian restaurant, and thought I should probably see the doctor before the long Memorial Day weekend. You know, to save my family from finding me dead on the bathroom floor. Too dramatic?<br />
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The doctor drew blood, since I hadn’t been in to see her in 6 years. Woops. I guess I’ve been busy keeping someone else alive.<br />
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She called on Tuesday with a sound of concern in her voice. “How are you feeling?”<br />
“I’m all better. It must have been the flu after all.”<br />
“Really? No more chills and fever and vomiting? <br />
Because your labs do not match up with that. Your blood count is extremely low and we want you to have a hematology study done as soon as possible.”<br />
<br />
Sensing her urgency, I probed, “What are you worried about?”<br />
<br />
All I heard her say was, “Blah blah blah Leukemia.”<br />
<br />
I made the appointment and we waited 9 long days for the test. I’ve realized 9 days is a loooonnng time when a mom hears the word Leukemia. My mind went to places that included my funeral, Mario’s remarriage, setting up full-time nursing for Reese. You know, the really dark places. Not good. But based upon the title of this story, you know I’m not dying. The test came back with blood counts in normal range.<br />
<br />
In those 9 days, I learned a few things that I thought I should share. Because I have a need for my pain to be used for good in other people’s lives. It’s a thing.<br />
<br />
Here’s the really deep part. Trusting God means trusting him with death. I realized it’s really easy for me to “Trust God” to heal me. And Reese. I have big faith and I know He can do anything. But to trust Him no matter what the doctor says—to trust God with life AND death—that is a stretch. To be able to say, <i>If I die, I know you will take care of my family</i>—that hurts. That one is hard. I have a child who depends on me for <i>ev.ery.thing</i>. And I have three teenagers (almost) and a husband that I adore and who need me. That took me to a place of ruthless trust. <br />
<br />
I hate to say it, but I feel like I failed the test. My heart was beating out of my chest for nine days. I found myself crying in the shower. You may say, Oh that’s normal! It is unless we are not normal. I believe God allowed those 9 days for a purpose. To show me how out-of-joint I could become. “It is one thing to say, ‘Do not fret,” but something very different to have such a nature that you find yourself unable to fret. It is easy to say, ‘Rest in the Lord and wait patiently for Him’ until our own little world is turned upside down.” (Oswald Chambers)<br />
<br />
I had moments where I surrendered it to God, where I felt total freedom to say, “Whatever you want, I trust you.” And then I had moments where fear overwhelmed me. And I believe God allowed me to see that what he wants for me is <i>a nature that is unable to fret</i> because I know that there is nothing He cannot handle—with or without me here on earth. <br />
<br />
Yesterday, I listened to one of my favorite songs and my body cried, YES! It sums up what He taught me last week. <br />
<br />
“Take me back to the place where my heart was only about you; and all I wanted was just to be with you. <i>Come and do whatever you want to</i>. Further and further my heart moves away from the shore; <i>whatever it looks like whatever may come I am yours.</i>” (Bethel Music) <br />
<br />
Whatever it looks like, I trust you, God. My circumstances are not too much for you. I will not fret because I cannot fret because it is not in the nature of one who trusts God’s plans. That is peace. Oh yes.:)<br />
<br />
Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-3508967291920696489.post-15512060036128588972016-05-09T14:31:00.000-07:002016-05-10T14:08:06.327-07:00"I Did Good"--Lessons from the Pure in Heart<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzat8DmLVpiAf8O8hFjj_kzEyzcU2HYfCWl-xvaTFBfKe0sxhVnH1mMg0lZj1WW_Zc561LYGymh7u3gDkIv_lDiAHpkEsJpJX1dTEFV5c9UKP9uQDxOAs-DVSriSWQHLYybrbWV538ryUy/s1600/mia+special+olympics.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzat8DmLVpiAf8O8hFjj_kzEyzcU2HYfCWl-xvaTFBfKe0sxhVnH1mMg0lZj1WW_Zc561LYGymh7u3gDkIv_lDiAHpkEsJpJX1dTEFV5c9UKP9uQDxOAs-DVSriSWQHLYybrbWV538ryUy/s320/mia+special+olympics.jpg" /></a></div>My teenagers volunteered at the Special Olympics games last week. Their job was to distribute the medals to the coaches, who would then present them to the participants. All day, they watched athletes take the stage and receive their medals with wide grins, fists in the air, the occasional jump of joy. They told me about one girl, however, who when presented with her silver medal, began to cry. She even turned her body around in a sign of defeat. What happened next has stayed in my heart for days. <br />
<br />
<b>A teenage boy, who was upset by her tears, scooted down the stage toward her. He tapped her on the shoulder, placed his gold medal around her neck and said, “Here you go. I did <i>good</i>.” And He smiled big. <br />
</b><br />
The purity and kindness of that almost stunned me. The thought that kept running through my mind was...<i>who does that? Have I ever known anyone to do something like that?</i> The answer is: only those who are pure in heart. I know a heart like that--I live with a child with special needs. Her pure spirit is of the highest value to me, and is something so special to God, so unique to humanity. <br />
<br />
Because it seemed like God kept hitting replay on this incident, I took time to get quiet and ask Him what He wanted to show me. Here’s what He said.<br />
<br />
You want to know who does that?<br />
He reminded me of all of the people who have shown us extraordinary kindnesses over the years. <br />
We needed a wheelchair van, and friends, family and even strangers gathered the money to make it happen. We spent weeks in the hospital with our daughter, and friends and family took care of our kids and meals and visited us to keep us from getting lonely. The many words of encouragement and hugs and gifts over the years that just said, “I see you. And I care.” Our daughter’s teacher, who wrote us a check to help with medical expenses. Our hairstylist who comes to our house to do 5 girls’ hair and refuses payment. All of those people are like this remarkable boy. <br />
<br />
No matter what it is, there is some place in your life where you "did good.” Maybe you have more money than you need. Give it to someone who needs it. Maybe you have been given lots of love in your life. Share it with those who haven’t. Maybe you have encouragement to offer. Bless others with your kind words. You are “doing good”…somewhere. It’s not meant for you to hold onto. It is meant to be shared with someone who needs it. I’m certain we are God’s plan A for taking care of one another. <br />
<br />
Matthew 5:8 says, “Blessed are the pure in heart for they shall see God.” I’ve often wondered if my special friends have a jump on the rest of us when it comes to this blessing. Maintining a pure heart seems to come naturally to my special needs friends, while the rest of us need to continually keep our inner lives with God in check. The bible promises that those pure-hearted ones will have no problem seeing God at work around them. But I often feel like the blessed one, because I get to see God’s love at work <i>because</i> of them.<br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3508967291920696489.post-67232446333947691472016-05-02T17:37:00.001-07:002016-05-03T07:43:03.264-07:00To the woman who called me disturbing and disgusting, thank you.You wrote us an anonymous email. You said that our views on medical marijuana are “disturbing and disgusting.” You also added some other things about how God will judge us soon, but that disturbing and disgusting part…that hurt the most.<br />
<br />
I just wanted to say thank you.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxQpeMc0XTjogVuJpNfeGkkrmDNO9VYBFaaGgaf2l6khbePotzOBRwMUOdv2_6HYKpvHRDYsW5eovy_m63Rfdqts6JCXa-4gKbSZFAikScWemNKiC5SthLiCj5zycXJCsnONll8RjdD2xe/s1600/Thank-you-600x600.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxQpeMc0XTjogVuJpNfeGkkrmDNO9VYBFaaGgaf2l6khbePotzOBRwMUOdv2_6HYKpvHRDYsW5eovy_m63Rfdqts6JCXa-4gKbSZFAikScWemNKiC5SthLiCj5zycXJCsnONll8RjdD2xe/s320/Thank-you-600x600.jpg" /></a></div>It took me a lot of time to sort this out. Because your words wounded me deep. But in that quest for the healing of my heart, I realized that I can thank you. And that has brought healing in itself.<br />
<br />
1. Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD), low in THC so she does not experience the high that is usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75%. This is after 7 years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be disturbing or disgusting about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi Syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible.<br />
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2. Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running…unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them. Because I was so mad at you for assuming you know what we have been through, I realized that I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially those about which I do not know the full story. Which is probably most things.<br />
<br />
3. Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. There are very few neutral words. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully. <br />
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4. Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache what that of feeling alone. You may not know this. Parenting a very rare child can be lonely and isolating. In this case, all I could hear was…yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, 'me too.'” Showing up, coming alongside and just saying “me too” can heal lots of wounds.<br />
<br />
So to you, the author of the email, I say thanks. Thank you for making me stronger. Thank you for making me kinder, I hope. Thank you for making me gentler, I pray. Thank you for making me more aware of the need for “me too.”<br />
<br />
You probably thought I’d fire back. But the beauty of raising a medically fragile child is…you get strong and with that, you learn to endure pain and keep moving forward. Onward, with more grace and love, hopefully for us all.<br />
Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3508967291920696489.post-36433986751045342952016-04-27T07:52:00.002-07:002016-04-27T08:01:24.985-07:00Love and CommunionI knew there was something wrong. She hasn’t smiled much over the last 4 days. Her seizures have been weird. She can’t tell me what’s going on because she doesn’t have the words. It is the worst part of raising a non-verbal child. The worst by far. But I knew something was wrong...because I know her. I have spent so many minutes with her that I have memorized every facial expression, every movement. When those expressions change, I know I need to start investigating.<br />
<br />
I took her into see the doctor yesterday. She diagnosed Reese with an ear infection and a UTI. Oh man, I felt horrible. Mother of the Year, that's me.<br />
<br />
My nurse friend told me that it was so wonderful that I knew to take her in even though she didn’t have words to tell me that something hurt. No fever, no crying. Just a different Reese from the one I know. I have never considered this to be anything special.<br />
<br />
As she woke up this morning with a smile, after a night of letting the antibiotic do its work, I talked to God about how much it hurts to see her in pain. And to not be able to ask her where it hurts and actually get a response.<br />
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I remembered my friend’s words about how great it is that I know her so well.<br />
<br />
And God reminded me that that is just like my relationship with Him.<br />
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The fullness of life flows from love and communion with God. <br />
Love.<br />
Time.<br />
Wanting to know everything about Him.<br />
Not because I have to but because I want to.<br />
<br />
I know everything about Reese because I want to. Because I love her so much.<br />
<br />
When I am in communion with Jesus in this same way, it is then that the light of life is mine. It is then that anything that is “off” in me is glaringly obvious to me. It is then that His goodness can flow out of me to bless other people. Because I know goodness and purity and truth. And I have the source of wisdom and life as my closest friend.<br />
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Love and Communion with God--that's what I desire, what I need. Reese's lesson for me today.<br />
<br />
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3508967291920696489.post-25992969957054402532016-04-12T15:57:00.000-07:002016-04-12T18:53:18.995-07:00Wonderful PeopleHave you ever had someone say something to you that hit the bottom of your heart and sent a ping, ringing around in there for a few days, in a good way? I know you have. Words have such unexpected power. And positive words have the ability to send us skipping through the whole week, even. Negative words…well, you know. But those positive affirmations. Those are the ones.<br />
<br />
The nursing supervisor visits me every few months to check up on my daughter. She examines Reese and asks if we are happy with the nurses who take care of our medically fragile child. It’s usually just one more appointment, kind of a nuisance really. But this last time, I scheduled her visit while two other therapists would be in the home. It’s called consolidation.<br />
<br />
The vision therapist bounded through the door with his booming voice and regular joy. Reese didn’t take her eyes off of him the whole time. Ironic, isn’t it? She qualifies for vision therapy because she is “blind", but she loves looking at him. And she smiles because of him.<br />
<br />
When he left, the supervisor looked at me and said, “Wow, he’s amazing.“ <br />
<br />
"Yes," I responded, "she loves him." <br />
<br />
She followed with, “Reese attracts such genuine, wonderful people. She is surrounded by the best people.”<br />
<br />
That felt like a big, warm hug. You know the kind? Like when you hear the words you needed to hear but didn’t know you needed to hear? Have you been there? Proverbs 25:11 says, "A word spoken at the right time is like golden apples on a silver tray." Yep.<br />
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She continued, “Most of my patients do. They have such pure spirits. They know who is genuine and they reject those who are not.”<br />
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It’s not that we have searched the town for the best people. It’s not that I asked around and hunted down awesome therapists. Reese attracted them with her goodness and purity. I loved that.<br />
<br />
I agreed with her and then spent some time thinking about all of the wonderful people in her life. This vision therapist in particular came to mind. When we told him we were starting an alternative therapy that would be expensive, he came the next week with a check for $100 to help us get started. In my mind, it may as well have been $10,000 because on a school district salary…well, it meant so much to me. Pure kindness.<br />
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Another one of her therapists told me that Reese has such a “beautiful quality of life.” This is a child with Aicardi Syndrome. She has seizures. She is in a wheelchair. Most of the world looks at her with sad, puppy dog eyes. But this woman…she truly sees the beauty. She sees the colossal love she gives and receives. She sees the explosive smiles. She sees the beauty that others miss. That is healing to my soul.<br />
<br />
An old high school friend, who I probably haven’t seen in over 20 years sent us $2500 to go toward her wheelchair van. Have you ever been surprised by love? I have. 80 caring people donated to make that dream a reality. One was a stranger who wrote a check for $15,000. Mouth hanging open.<br />
<br />
Some friends of my mom brought over a collection of gifts and gift cards at Christmas, just to bring us joy. Surprise.<br />
<br />
Her speech therapist came to see her and brought her son with her during her own spring break. He’s the same age, so they played Shopkins.<br />
<br />
Her preschool teacher still comes to visit her.<br />
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Her nurse checks in on her on her days off. I know she loves her like she’s her own child.<br />
<br />
Her pediatrician calls and emails on the weekends. Because she actually cares.<br />
<br />
All the meals, all the emails and texts and facebook messages from people who are drawn to her. That fills me.<br />
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She has attracted beautiful people. She has brought goodness into our lives. She has attracted love. And we are the beneficiaries of beauty because she attracts beauty.<br />
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It’s kinda like what I always tell my girls: You get what you give. You attract what you are. I think I actually may be right.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3508967291920696489.post-5133448725593824642016-03-30T15:13:00.002-07:002016-03-31T08:28:59.681-07:00How We See the Powerless<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilMd8wJY7JoOr3omDdgz35BlCi6Cy-NA0l8NHBdw2Y3Zzkn5ZWm7FfZXeWyJzHL-715iEs-g_TtvCl8mQddkwveglDyNitzxmf7-BL0boKmiMNkoTKJZNshDMuLFkzWh7C9z_IVTn4z3pe/s1600/reese+sitting+2016.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilMd8wJY7JoOr3omDdgz35BlCi6Cy-NA0l8NHBdw2Y3Zzkn5ZWm7FfZXeWyJzHL-715iEs-g_TtvCl8mQddkwveglDyNitzxmf7-BL0boKmiMNkoTKJZNshDMuLFkzWh7C9z_IVTn4z3pe/s320/reese+sitting+2016.png" /></a></div>Our home health nurse was out of town. It was my scheduled day to work lunch duty at school for a fundraiser, so I loaded Reese in her wheelchair and buckled her in the van. Because I've become a certifiable germaphobe, I don't bring her to school very often anymore. Hey, don't judge. Germs can send us to crazy town so fast this time of year.<br />
<br />
I parked Reese next to my picnic table. She enjoyed the warmth of the sun and the gentleness of the breeze, eyes closed, half smiling. The second graders moved through the line and I noticed some wide eyes examining her. There was one girl who positioned herself at the table opposite Reese and fixed her eyes on her. She took a bite of her sandwich but never loosened her gaze. Staring. and staring. eating and staring. Then she whispered something to her friend, never allowing her eyes to leave Reese. I realized Reese and this girl were the same age. She was curious. Maybe concerned. Reese no longer looks like a baby in a stroller. She is a big girl in a wheelchair. It's so hard for me to watch people stare at her, and not really because it hurts me anymore. But it hurts me for Reese. Something about this made me extra sad, because she was essentially a "peer" of Reese's, and I thought about how Reese might feel. They would be classmates under different circumstances. I stared back at that girl until she finally took her eyes off the object of her curiosity, noticing my returned stare. Finally, she looked away.<br />
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I wondered for a second. Will my girls be embarrassed by her when they come to lunch? I wouldn't blame them. I hate to say that, but I remember being an adolescent. Anything that is different or that draws attention your way can be awkward, even devastating. Their peers made their way through the line and I wondered. Is this hard on them? My heart hurt a little.<br />
<br />
Then I heard her. I heard our daughter from across the courtyard. She was sitting with her high school friends. She spotted her 8 year old sister in her sun hat, reclining in her pink wheelchair. "Oh, look at Reese! She looks so cute!!" she told her table of friends. Then she returned to being a high schooler at lunch. She wasn't embarrassed. She was proud of her and she wanted everyone to see her! Yes. That brought a smile. One by one, her three sisters individually came over to give Reese a hello and a kiss. That staring episode was quickly overshadowed by the pure, unashamed love. <br />
<br />
It reminded me of one of my fave fave favorite books, "The Power of the Powerless." The author said of his brother, "My room was separated from Oliver's room by a single wall. Five inches of wood and plaster divided us from each other during the night. We breathed the same night air as Oliver did, listened to the same wind, and slowly, without our knowing, Oliver created a certain power around us which changed all our lives. I cannot explain Oliver's influence except to say that the powerless in our world do hold great power. The weak do confound the mighty." Insert Reese's name in there--that has been our life. Totally changed.<br />
<br />
The other day I told my sister that too often people tell me that Reese's life makes them so grateful for their healthy children. That's weird, right? It happens more often than you'd think. I know they think that will be a blessing to me. It's not, really. I guess I'm not nice enough or mature enough to appreciate that offering. Or something else. But we hashed that out together, realizing at the core of that comment is the lack of understanding that I am the one who is blessed. I cannot explain the power of a child like Reese. But she has brought a sacred, beautiful, powerful fragrance to our home. To our air. To our lives. We are blessed because of her, not in spite of her. It's true. I feel like the world needs to know that. 1 Corinthians 1:27 says, "God chose things the world considers foolish in order to shame those who think they are wise. And he chose things that are powerless to shame those who are powerful." Those who live with a powerless child know this to be true, if we will have eyes to see.<br />
<br />
"So much depends upon how we choose to see things and events...we have the power to choose." Christopher De VinckUnknownnoreply@blogger.com17tag:blogger.com,1999:blog-3508967291920696489.post-53969475617486547212016-01-21T13:51:00.001-08:002016-01-21T13:51:11.301-08:00Monster WarriorI remember a friend telling me that finding out there is something wrong with your child is like being trapped in a dark room with a monster. You can hear him, but you can’t see him. Getting the diagnosis--it is like flipping on the light and seeing the monster face to face. <br />
Living with a child who has been given a terminal diagnosis is like being trapped in that room with that monster all day every day. You are terrified at first. You cry and tremble. You try the door over and over. Surely, there must be a way out of this room. But there is no way out. You realize you have to find a way to get comfortable in that room, with that monster. You spruce up the place but you sure don’t feel comfortable. Finally, you decide to tame the monster. You spend all day and night reading articles like, “How to Keep Monsters from Eating You.” And “How to Make Monsters Stop Growling.” And “What Monsters are Thinking.”<br />
Finally, it seems you may have the monster under control, but you know he’s still a monster. You know you cannot take your eyes off of him.<br />
Every day, you wake up thinking about the monster. Every night, you jump up when you hear him move. Monsters do crazy things in the middle of the night.<br />
When that monster gets nasty, you pound on the door for help. Someone comes to give you advice. “Do this!” They say. “Try more of that.” And the monster calms down for awhile. <br />
Some friends stop by to slip notes under the door. “You can do this!” They say. “How are you?” Some get tired because you never say “I’m great!” They are tired of hearing about that monster. It’s just too hard on them. “There’s more to you than just a monster!” they say. But they haven’t been locked in a room with a monster. <br />
Sometimes it gets really lonely in that room. You feel like maybe you are the only one who is fighting a monster. <br />
Then there are the people who come with permission slips and such. “Why haven’t you signed this yet? You’re late. We are waiting on you.” “Oh, I’m sorry. Just slip that under the door. I’ll sign it as soon as this monster settles down, OK?” <br />
And then there are a few people who keep coming and just sitting. “Hey there. I’m sitting outside your door. I just wanted you to know I’m here. How's that monster?” Yeah, those people are special.<br />
As much as you hate that monster, you know you have to keep fighting because life without your child would be far worse than a day fighting the monster. So you keep up your fight. You find out there are other people with the same kind of monster in their room. You write each other letters and you draw strength from them. Not everyone cares about monsters, but some people do. <br />
Then one day you realize, you were made for this. You can do this. You were made to fight monsters. You are a monster warrior. Not everyone is a monster warrior. But mama, you are! And you see that monster differently. He doesn’t control you. He’s just a jerk, a nuisance. You put him in a choke hold with one hand. You knock him to the ground with a throat punch. Now he’s scared of you.<br />
But you still always have him on your mind. You check the door every now and then. Still locked. But it’s OK. You’re a monster warrior.<br />
Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-3508967291920696489.post-45735315286997791412015-12-21T07:12:00.001-08:002015-12-21T18:21:01.280-08:00Christmas Card SimplifiedMerry Christmas, Friends!<br />
<br />
In my simplification efforts, I have crossed off "Addressing Christmas Cards" from my to-dos and have opted for a Blog update for those who love us enough to open it. If you sent us a card, we cherish it and have it displayed in our home, and we think of you every day. So, the Christmas Card...oh I still love it...but my sanity, I love that too. So here we have landed.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxOcShuD3vC8aaS_f2B59Wi3l-qlEPYMiiWSoXg_Jir8hq9Th4T1VRI2BacTrzByk8JaUFqU1qb5wAzKlDRysHywbDn7uL-wzZkDBP1z5d04lFllZf6E7PjRzxV-53ZpuIy2zf4fjIvz3/s1600/family+zoolights+2015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifxOcShuD3vC8aaS_f2B59Wi3l-qlEPYMiiWSoXg_Jir8hq9Th4T1VRI2BacTrzByk8JaUFqU1qb5wAzKlDRysHywbDn7uL-wzZkDBP1z5d04lFllZf6E7PjRzxV-53ZpuIy2zf4fjIvz3/s640/family+zoolights+2015.jpg" /></a></div>The kids are growing up. It's one-half exciting, one-half terrifying. Some days I look at them and think, <i>We did good</i>. Other days I think, <i>Man, this is a hard job. Is there a Mulligan option?</i> I adore them, I really do.<br />
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I could say 2015 has been the best of times and the worst of times. But I already wrote about that in my last post. You can scroll back if you care to. I'll sum it up in a kinda-quick version for you here:<br />
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Reese: This lil munchkin kept us really busy, beginning January 1st, 2015 with her first of SIX hospital visits for pneumonia or respiratory distress. This caused us to find intense PREVENTATIVE (hooray for preventative!) therapies we can do at home. It's time-intensive but so worth it, as we have now gone August 28-December 21 with no hospital visits. Can I get an AMEN!!! And a WOOT!! But as you know, this child is so much more than respiratory issues to us. This little LOVE embodies to us so much of what is precious to God. She is a part of that upside-down kingdom I have always struggled to understand. Remember the Beatitudes? "Jesus was right: it is the poor, the sick, the sad, and the oppressed who are the blessed in our world. He said it was to them that his kingdom was coming, and <b>it was to them that it would be actual, real good news."</b> D.L. Mayfield. Oh, and she also said, "I love you" and "Mama" this year.:)<br />
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Olivia: Livi, Liv, Livers, Livi Lou, Livster, whatever you want to call her, is a 6th grader, officially a Junior Higher at our school! AAAHHH! In case you are keeping track, we do have two High Schoolers and one Junior High girl under our roof. Prayers and solidarity, please. Livi has always been that delightful, quirky, artistic, funny kid. The kid I always wished I was. This is the first year I see the Junior High-ness pulling one hand, while I am pulling the other. Nooooo!!! Stay with me, you sweet thing! I will battle til the bitter end. She loves to bake, with or without me, which is why my efforts at any clean eating come screeching to a halt all too often. I totally eat raw...until there are chocolate chip cookies. Anyway, back to Liv. She debuted in her first musical this year and she actually enjoys running on the Cross Country Team. So weird. Her study skills make me feel like I did something right as a mother, but truth is, it's probably just her personality. She's awesome. <br />
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Mia: You know what I love most about Mia? Do you see her holding Reese's hand in the picture? Yep, that's always Mia. She adores and protects Reese. It's supernatural, y'all, this love and compassion thing. I love it. But in addition to Reese and all little kids, Mia loves the theater. Yes, I said that in a British accent. She sings all day every day and has never ever complained about a theater or Performing Arts rehearsal. It makes her come alive, and I'm so happy that she found it. She was in Seussical with Livi and is looking forward to her next show in February. Mia is on the High School Basketball Team, mostly because we made her. Yeah, we are terrible parents like that. But they needed her and she needed them, so that's the way we do it. We have a blast watching her. Confidence is not a problem.:)<br />
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Faith: Faith is a Junior. Heart starts pounding. We are nearing the end of her "childhood", and it's freaking me out a little bit. I'm sure you know Faith plays golf like a boss. Yeah, her dad is pretty proud of her, so if you haven't seen a post about her on social media, you will. She finished 5th in the State Tournament which got the attention of college coaches, so we have visited a few schools to talk golf already. She has dreamed of playing in college since she was 8 years old, thanks to her Poppy, so it's a real trip seeing her dream unfold before her. She's been my buddy for the past year and a half, as we held her close for one last hurrah of homeschool, but she's headed back to the real deal this semester to wrap it all up in a pretty bow. OK, now I'm crying.<br />
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Mario: The big guy is kicking butt at life, as always. Oh my gosh, that totally sounded like something he would tell me to say! We are ONE person, you know. We celebrate 20 years of marriage on December 30th, which seems so crazy. Mostly because we are so old. But it's been a fun, incredible, horrible, unexpected, wonderful, delightful 20. I never could have imagined it. You know what I love most about him? He loves Jesus. He is rarely sidetracked. It's always very clear to him. And I also love how he gets up many times a night to check on Reese. It gives me the warm fuzzies. And I also love how he loves what he does with our ministry, Death2Life Revolution. Did you know that 500 suicidal kids a day come to the website for counseling? It blows me away how much God loves these kids and the ways He has made for them to find us and get love and help. Now I'm crying again.<br />
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Kerry: Well, you know I cry a lot. If you know me at all in real life, I have cried in front of you when I was talking about something important to me. It's just me--weird and embarrassing--but there's no stopping it. I'm grateful for another year that has led me to the realization that I know so much less than I thought I did. And I have been held by God when I just could not control life. And I have learned humility and forgiveness--again. And it is all good.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMLSqVhBno7d_hLD8U1fZvTzZEc9Ixbav5dWbO8G4Nd8ZYeUuDPjEErDv07qlnsB5xcB94YQzXaj5KegYrfsFpnJNHcq5v2VspE6lPJV6DAA-YMmTxdy_lXj8kRkY6fdbwXAnfBZtXXJx8/s1600/family+zoolights+sunset+2015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMLSqVhBno7d_hLD8U1fZvTzZEc9Ixbav5dWbO8G4Nd8ZYeUuDPjEErDv07qlnsB5xcB94YQzXaj5KegYrfsFpnJNHcq5v2VspE6lPJV6DAA-YMmTxdy_lXj8kRkY6fdbwXAnfBZtXXJx8/s640/family+zoolights+sunset+2015.jpg" /></a></div><br />
So as we come to a close, allow me to share a few thoughts that have been swirling...<br />
Consider this...the King of all Kings, high above any King who has ever lived, richer, more powerful than any of them...He chose to leave His throne and come to Earth and walk among us, in our mess. But not to walk among the rich and powerful. He chose to come in the lowliest of places. He CHOSE to be born <i>homeless and rejected</i>. He CHOSE to make His entrance in a urine-soaked, poop-stinky stable. Why? There is a reason, you know. Just let it settle in. He CHOSE to become nothing because those are his peeps. THOSE are the people who would really consider his coming "good news." He wanted to get our attention, and I think we should pay him that. It is so upside-down. Consider it.<br />
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"It is by far the most amazing miracle of the entire Bible--far more amazing than the resurrection and more amazing even that the creation of the universe. The fact that the infinite, omnipotent, eternal Son of God could become man and join himself to a human nature forever, so that infinite God became one person with finite man, will remain for eternity the most profound miracle and the most profound mystery in all the universe." Wayne Grudem<br />
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"What a mistake to think that it is the task of theology to unravel God's mystery, to bring it down to the flat, ordinary human wisdom of experience and reason! It is the task of theology solely to preserve God's wonder as wonder, to understand, to defend, to glorify God's mystery as mystery." Dietrich Bonhoeffer <br />
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Jesus is our Wonderful Counselor, Prince of Peace, Mighty God...our cherished, mysterious brother and friend. He became a man, rejected and beaten, ultimately put to death for you. That is LOVE. That is MYSTERY. Let us live in that WONDER.<br />
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Merry Christmas to you. May His Peace be yours today and always. And Go Cards.<br />
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Love,<br />
Mario, Kerry, Faith, Mia, Olivia and Reese<br />
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P.S. If you know and love my mom, you will want to know that we got some great news?!?! She has been diagnosed with Normal Pressure Hydrocephalus (NPH). I know you're confused. This is great news because it explains why she has been having trouble walking, and it is reversible!! We are praising God for this answer and look forward to the procedures in January that will help her get better. Please remember her in prayer. Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-3508967291920696489.post-37994132989792904082015-10-31T08:25:00.000-07:002015-10-31T12:07:11.053-07:00The Beautiful and the Heart-Shattering<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLpyuKPp9R33DR6escexkn_ZKKNzGpgBi-lWNArqUWxfj6zxX6h80phO8nWCxWeexgU-_M7zfZu-7UkrIi8AmWSeNwE6U19bhxd_IbEu3mrfNmZDA58_9xw1_AdA-fVkGDPbw_w84hlmWf/s1600/Reese+2015+in+tomato+chair.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLpyuKPp9R33DR6escexkn_ZKKNzGpgBi-lWNArqUWxfj6zxX6h80phO8nWCxWeexgU-_M7zfZu-7UkrIi8AmWSeNwE6U19bhxd_IbEu3mrfNmZDA58_9xw1_AdA-fVkGDPbw_w84hlmWf/s400/Reese+2015+in+tomato+chair.jpg" /></a></div>Our sweet baby girl turned 8 this week. I took some time to look back over the last year in celebration. It has been both the best and the worst year. Our hearts have exploded with joy and been broken to pieces. And I realized, that is life, all the time, everyday. Joy and pain mixed up and stirred together.<br />
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Reese began Cannabis Therapy for her uncontrolled seizures just before her birthday last year. Honestly, there was no fear. We had researched this and waited for it to become legal in Arizona and then waited for the plant to grow—literally. The specific strain that treats pediatric epilepsy is given in an oil form with most of the THC (the part of the plant that provides the high) removed. What's left are the healing properties. So there was no lab that could whip it up. We waited for it to grow. It was like watching paint dry…except our child was seizing every day so we were REALLY ready.<br />
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It worked. Beautifully. A year ago, Reese was having 2-4 seizures a day, everyday. And that was her on 4 anti-epileptic pharmaceuticals, some of which have side effects of liver failure and blindness. Her seizures were so normal to us, such a part of our routine. “Mom, Reese is having an S,” was a normal conversation. (We don’t actually speak the word “seizure” in our home. It doesn’t deserve to have its name spoken). Cannabis oil has taken that number down to 1-2 seizures a week. To say it is a God-send, or an answer to prayer, or our miracle just seems too cliché. True, but it could be lost in the cliche. It has transformed her life and ours. Not only is she not seizing every day, but because of that freedom, her personality has emerged. She is communicating and connecting and loving people. This has been the best part of the year. [Ezekiel 47:12 "Fruit trees of all kinds will grow on both banks of the river. Their leaves will not wither, nor will their fruit fail. Every month they will bear fruit, because the water from the sanctuary flows to them. Their fruit will serve for food and their leaves for healing."] Oh yes, healing in the leaves.<br />
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On the flip side, Reese’s respiratory health has been a mess. She has been hospitalized 6 times for respiratory distress or pneumonia over the last year. Every time we call the ambulance or rush her into the ER, my heart shatters. It is hard on all of us—the family, the routine, the mind, the body, and most of all Reese. Every time my mind asks God, Is this it? It has been a very hard year. We’ve learned how to do it now, which just sucks. Running your child to the ER in respiratory distress shouldn’t be a routine you perfect. It sucks big time. It has aged me, worn me down, sucked some life out of me.<br />
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I realized something in my reflection over this year though. Every time our hearts get shattered, they heal. They heal with a little scar tissue. There is the memory of that heartache and the circumstances surrounding it, but there is healing. Just like any part of the body that has been scarred over and over, it becomes bigger. And I’ve found that as brutal as heart-shattering is, a heart that heals over and over becomes bigger. I feel like that has happened to us this year. Our love for Reese is even bigger. Our love for our girls—bigger. Our love for our families--bigger. Our love for God--bigger. And interestingly, our love for humanity as a whole, especially those who are hurting—bigger. Such an interesting side-effect of heartbreak, if we allow it. And the truth is, there is only One who can provide that healing. Whether you know Him or not, He is the healer. And whether you allow him to heal you or not is up to you.<br />
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Joy and pain. Healing and heartbreak. I guess it will always be the rhythm of life. In our case, it just seems more dramatic. But it is the rhythm of all of our lives. I’m leaning into it. I’m not surprised by it anymore. I don’t expect life to be perfect, nor people to be perfect. Some days will be awesome. Some people will be awesome. And some won’t. So what. I’m embracing it all and allowing God to do His mysterious work on the inside. He is mysterious, you know. I don’t understand it all and I believe I wasn’t designed to. The beautiful transformation is when we can trust Him with all of it, beautiful and ugly, healing and hurtful.<br />
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So once again, I say Happy Birthday, Reese. You are my wonderful gift, my sweet perspective-provider. Thank you for another wonderful year with you.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd1e5ci0QrRcJ9Q5SeDUubWvWouz6forgPMZGtRlHxXz3Mf2KHEQ8j0-7Jj7bCRzvKOE51Pr-qsWUUGaagZ2cEjURIvLLR9Q5qUzcNqlI2Z1_iCxOMf1AYP7BgEffNpWOSxZ3OFMEW3YKX/s1600/Reese+favorite+2015.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd1e5ci0QrRcJ9Q5SeDUubWvWouz6forgPMZGtRlHxXz3Mf2KHEQ8j0-7Jj7bCRzvKOE51Pr-qsWUUGaagZ2cEjURIvLLR9Q5qUzcNqlI2Z1_iCxOMf1AYP7BgEffNpWOSxZ3OFMEW3YKX/s320/Reese+favorite+2015.jpg" /></a>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3508967291920696489.post-89790750402031941872015-05-05T21:09:00.002-07:002015-05-07T14:35:32.363-07:00The Poopy Shirt<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtHha-iOxusMJ7gqy3rbQ57L0Ms4qkm2cICj8u7eknahwSxwMUYlYL1odwZhezn4VcVjs_LNqzgrQA87ewryjZJ84k9jPNZwOdI9nSsZ9EgzRDDESJKTzq-uSYluB2FnIyXQhMqIFvkIU/s1600/1798661_10152758563657220_7253932219704079310_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDtHha-iOxusMJ7gqy3rbQ57L0Ms4qkm2cICj8u7eknahwSxwMUYlYL1odwZhezn4VcVjs_LNqzgrQA87ewryjZJ84k9jPNZwOdI9nSsZ9EgzRDDESJKTzq-uSYluB2FnIyXQhMqIFvkIU/s320/1798661_10152758563657220_7253932219704079310_n.jpg" /></a></div>I looked down and saw poop on my shirt. Oh, yes. It was on my jeans too. Too bad I was in the car on the way to pick up my big kids from school. It was too late to turn around. So I just went with it.<br />
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I had changed the bedding, scrubbed the carpet, and changed her clothes twice already. After the second “poop massacre” of the day, as we affectionately call it, I felt tears creep into the corners of my eyes. Yep, I was feeling sorry for myself. This wasn’t how I wanted to spend the day. <br />
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Then she smiled at me. And my perspective changed.<br />
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And I thought about the poop. I may be cleaning up poop for the rest of my life. That’s just the reality of raising a child who requires “total care”. But as long as the poop is here, that means she is here. And as long as she is here, I will love taking care of her. And I mean it. I LOVE taking care of her. She makes every day bright, every moment special.<br />
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It was then I was reminded…a happy life is totally dependent upon perspective. A poopy shirt means my daughter is alive and well. Having to prepare meds 5 times a day means she is here! If she were gone, I promise you I would miss these things so much. Attitude is everything and a good one requires daily adjustments to keep life in proper perspective. <br />
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It got me thinking about other things in life. How they may seem difficult at first, but upon second glance, I can see God’s presence illuminating the beauty. Consider these things:<br />
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My child cannot walk. It means I can cuddle with her for the rest of my life. And she doesn’t wiggle to get away.<br />
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My husband’s clothes left on top of the dresser. It means he’s here. I have a partner and a buddy! He’s fun, full of love, and uninhibited. <br />
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My child cannot talk. I get to imagine all of the beautiful things she would say to me if she had the words. And my imagination never includes any sassy talk.<br />
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Hospital visits. They allow me to come in contact with incredibly loving, selfless compassionate people. And whenever we are there, I get to watch God at work.<br />
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Even the betrayal of a friend. It makes true, loyal friends look really spectacular and makes me adore them even more. And it reminds me where to invest my time.<br />
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With almost every circumstance, there is a blessed silver lining. It can be seen with a quick, intentional shift in perspective. <br />
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It was no coincidence that after mulling over these thoughts, I read the following passage in a book I just purchased:<br />
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“Bittersweet is the idea that in all things there is both something broken and something beautiful, that there is a sliver of lightness on even the darkest of nights, a shadow of hope in every heartbreak, and that rejoicing is no less rich when it contains a splinter of sadness. Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands. Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity.” From Savor by Shauna Niequist<br />
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Here’s something I never thought I’d say: I’m thankful for my poopy shirt. It gave me a shove back into place. It’s a place where I am on an all out search, despite the splinters of sadness, for all of the richness and beauty of raising a child with a disability.<br />
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3508967291920696489.post-75117481538376146072014-11-26T13:44:00.001-08:002014-11-28T19:17:46.572-08:00If Only He Had KnownWe parked the wheelchair in the back corner of the church. We always sit there. On this particular Sunday, Reese was especially chatty. Not in words, but in happy sounds. She seemed to be singing along with the choir or praying along with the pastor. We looked at each other and giggled. But one man, about 5 rows in front of us, didn’t find it so adorable. Every sound she made, he sharply turned his head to look at her. Mario got up to walk her out to the lobby, and I saw the man shake his head in disgust. Oh yes, he made sure I saw him. That was the point of his display.<br />
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I replayed the scene for a friend days later. She responded, “If only he’d known all you have been through.”<br />
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Yes, I thought. If only he had known everything we have been through to get to those happy chirps in the back corner of a church. If he had known the years of uncontrolled seizures, sometimes 25 a day, would he still shake his head? If he had known the years of unresponsiveness due to all of the seizure medications we used (unsuccessfully) to control those daily seizures, would he still stare? If he had known about the buckets of tears I have cried, the sleepless nights talking to God, the hours of research, would he still glare at her? If he had known the joy it brings us to finally see her smile, laugh her head off, attempt to communicate with us, and to enjoy a church service would he still have been so disgusted? I doubt it. <br />
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It made me think. <br />
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Days later, I sat at the stop light next to a woman holding a cardboard sign and this phrase popped into my mind…”If only I knew all that she has been through.” A few days later I received an upsetting phone call from an angry woman. It kinda blindsided me. After I brushed myself off, I thought, “I have no idea all that she has been through.” I realized I could apply this thinking to every human interaction.<br />
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Just a thought…but can you imagine how awesome the world would be if we all held each other with that kind of care and mercy? What if we always asked God to show us the “why” behind they way people think, feel and behave...and chirp in church. I know God will give us wisdom and a whole lot of mercy and love to spread around.<br />
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Thank you, Reese, for teaching me once again. The best teacher I ever had.<br />
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3508967291920696489.post-51430181964287447412014-10-02T18:44:00.003-07:002014-10-05T06:36:51.386-07:00The VAN!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPcIfTf9Wc7MBgq9q9ZywuDZS6H2DnqMPNKpt2ZSJtjGJBrENwGOmdnv4uyc2IcV5_wEsQ3UJ0pdBmSTKsk_Cn7hFaT2lIuSfIc6ZOfohYXcGPrqf52p0PEgtYGHgkZmV72GatJaVVClaQ/s1600/the+van.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPcIfTf9Wc7MBgq9q9ZywuDZS6H2DnqMPNKpt2ZSJtjGJBrENwGOmdnv4uyc2IcV5_wEsQ3UJ0pdBmSTKsk_Cn7hFaT2lIuSfIc6ZOfohYXcGPrqf52p0PEgtYGHgkZmV72GatJaVVClaQ/s320/the+van.jpg" /></a></div>Our Wheelchair Van is here!<br />
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4 years ago, we started talking about the need for a Wheelchair Van for Reese. We knew it would probably be a necessity since she was not holding her head up, let alone walking.<br />
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My sister in law, Jackie, offered the idea of some type of fundraiser for Reese. A great idea, but putting together a "run" or a "walk-a-thon" would take lots of time, a commodity neither of us has a lot of lately. So I started praying.<br />
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God has taught me to commit my big dreams to Him and wait. It started with our piano. When our girls were little, I decided they needed to take piano lessons, but our house was sans piano. Huh. Problem. I checked the prices and realized it would be awhile before that fit into our budget. So I decided to pray. I just put the piano on my list and asked God to give us one. It seemed crazy, as I knew there were much bigger problems in the world. But it was fun to have a little secret dream just between us. Every time I thought about the piano, I just asked him to provide it. I didn't tell anyone because I wanted him to wow me.<br />
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Months later, my mother in law called and asked, "Do you want a piano? I have a client who is getting rid of one and she wondered if I wanted it." Ha! You bet I did!! That bad boy is in our home today, a gleaming reminder of God's care for even the little desires of our hearts. He wowed me alright. AND a recording artist was here the other day, playing our piano, and he commented on what a great piano it is. Of course it is, I thought. God doesn't deliver junk! It made me smile.<br />
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So I applied the same faith to our van. Years ago, while praying, God assured me that He would provide a van for Reese. I knew He would, I just wasn't sure how or when. As she got bigger, I reminded Him of His promise. You didn't forget us, did you?:) I keep checking the driveway, and it's not there yet...<br />
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My sister, Kristen and SIL, Jackie set up a Gofundme page in August. It was a "let's just put it out there" type of campaign. I guess we will just see what happens?<br />
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So it was out there. And people started giving. A friend called the TV station and they reported the story. Every gift touched my heart deeply. We received gifts from $5 to $14,000 and everything in between. We received gifts from dear friends, sweet family and from perfect strangers. Gratefulness welled up in me at the sight of every name. I couldn't help but think these people could spend this money on anything, but instead, they are giving it to us with nothing expected in return. It was beautiful, selfless, moving.<br />
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Jumping off the page, Galatians 6:2 spoke to me this week. "Carry each other's burdens, and in this way you will fulfill the law of Christ."<br />
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God has called us to carry each other's big stuff. When things get too heavy, we are to come alongside and lighten the load. And in so doing, we look a lot like Jesus. I think this is why I've been so moved by this incredible gift to us. So many people came alongside us and said, "Let me help you with that. This is big, but I can help." And to me, they look a lot like Jesus. And He is so beautiful.<br />
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So to everyone who made Reese's Wheels a reality…we say thank you! You are a HERO to Reese and us, you are selfless, kind, appreciated and loved. When you see Reese rolling around town, let it be a reminder of the burden you lifted and allow it to encourage you to continue lightening loads, lifting people, looking for those who are carrying more than they can bear, and do what you can to spread some good old fashioned love.:)<br />
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Once again, God came through. And like He always does, it was more than I imagined. He is faithful. I wasn't sure how He was going to do it this time. But He chose to use people. Lots of wonderful people. Thank you, people. We love you. <br />
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3508967291920696489.post-74256775582246537692014-09-25T15:40:00.001-07:002014-10-05T06:55:23.285-07:00The Upside<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWUF0FVgfIXCQn0OSMXWhkVIAxtZbJnI3D0ZRBgyHinB4ea4FHRfwYz2vHg8uduMjSvlEMujUnZjDUfI8QHzQpRaa6Kg5uELP7ZQ3TSGDqId8b7Lhg3erbjIMLltJUO9HV2E8C-d9JUeQJ/s1600/reese+and+girls+laugh+in+van.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWUF0FVgfIXCQn0OSMXWhkVIAxtZbJnI3D0ZRBgyHinB4ea4FHRfwYz2vHg8uduMjSvlEMujUnZjDUfI8QHzQpRaa6Kg5uELP7ZQ3TSGDqId8b7Lhg3erbjIMLltJUO9HV2E8C-d9JUeQJ/s320/reese+and+girls+laugh+in+van.jpg" /></a>I guess the upside is not obvious. Raising a child with special needs might look pretty awful from the outside. Not long ago, a family friend asked my parents, "Wouldn't it have been better if they had just aborted her?"<br />
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You might be shocked right now. You might be thinking, "I agree with that." I'm not shocked either way anymore. I realize if one person has the guts to say it, there are many more who are thinking it. Truth be told, that comment shattered my heart, and every time I remember it, my heart breaks all over again. Caring for a child with complicated medical issues can be very difficult. But there is an upside, there really is. I'd love to tell you about it, if you're willing to stick with me.<br />
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I really. really. really needed to hear about it when Reese was born. But nobody was telling me. So I think I need to tell you about it. "You," being those who think like this family friend, and "you," the mom of the child with the diagnosis that is spinning your world out of control.<br />
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Yes, difficult days happen. We all know that, right? But as with anything that has a big payoff, there will be some gut-wrenching moments. I want you to know there will be beauty. You have to look for it, you need to expect it. It comes to those who are looking. Here is the upside, in my own experience, from my rearview mirror: <br />
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1. You will get strong. You will look back after a few years and not recognize the woman you used to be. You will be confident and sure, you will care less about what others think. You will be an expert on your child's condition and you won't be afraid to challenge the doctors. Be careful though. You have a choice. It sounds cliche, but you can get better or bitter. Sometimes it is a daily decision. The choice is yours, so check your attitude as you get stronger and be a source of strength for others who need it. <br />
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2. You will love deep. Every mom knows the overwhelming love I'm describing, when you first lay eyes on your tiny newborn. But there is another level of love that comes with fighting for your child's life, for her acceptance, for her happiness, every day. Praying all night and begging God for more time. Fighting for your child will grow in you a depth of love like nothing you have ever felt before. And it will make you love everyone more. It may really hurt sometimes, but that pain is your heart is growing in size.<br />
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3. You will know God like you've never known Him. You will want to know the Creator in a way you may not have needed to in the past. You may be mad at Him for awhile, but I hope that leads you into a relationship with Him. You will pray a lot and you will see God move. You will cry out for help. You will sit in silence with Him. And if you seek him with all your heart, you will find Him. I wouldn't trade what I have found in Him for the world. If you hear anything I am saying, hear this. There is a great treasure waiting for you. Don't miss it.<br />
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4. You will meet incredibly loving people and will be on the receiving end of sacrifice and care. You will need help at times and wonderful people will step in and blow your mind. You will be grateful and then you will want to be that incredibly loving person for someone else.<br />
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5. You will not care about meaninglessness anymore. The things that used to take up a big part of your day just won't seem that important anymore. All the clutter will fall away. You will be more grateful and will appreciate the little things. Gratefulness breeds happiness. So you have the potential for loads of happiness.<br />
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6. You will think about heaven a lot. When a doctor told me my child would live a short life, I spent a lot of time reading about heaven. I remember the day this verse jumped off the page at me, "Think about the things of heaven, not the things of earth." Colossians 3:2. It was then I realized what a GIFT God had given me; a daily reminder to keep my mind set on heaven. This is where he <i>wants</i> my mind. Because when it is set on eternal, meaningful things, there is no room for things that aren't important to God. This is a gift that has reined me in from pursuing frivolity.<br />
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7. You will bring hope to people when you don't even know it. I'll never forget the man in the Neurosurgeon's waiting room. He held is son close. They smiled and loved each other. The boy's head was deformed, and although he couldn't talk back to his dad, I could see and feel the love between them. They were loving life together. They weren't sad or scared. It changed my life. They never knew I was watching. But I knew it was God's way of letting me know there would be beautiful love amidst the struggle.<br />
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8. Your other children will develop compassion and selflessness. They won't be the center of the world anymore. Because they can't be. It's a good thing and you will see beauty emerge from them. They will naturally love the underdog and will look out for those who need it. <br />
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9. Your family will be very close. You might spend a lot of time at home. Don't bemoan the fact that you can't do what other families are doing. Enjoy the fact that you will have a tight knit family because you spend so much time together. And on that note…be sure to nurture your marriage. You need each other and this has the ability to break it…or bond you together so tightly that nothing will ever rip you apart.<br />
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10. You will love people better. You will love more people. You will allow them to be imperfect and you will widen your group as your heart gets bigger. You will be friends with people you may not have before, because they also have children with special needs. And you have an instant bond.<br />
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Those are my 10. What are yours?<br />
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As with every single thing in life, I believe attitude is everything. How will you see this little person? Is she a gift or a burden? <br />
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I remember I cried every single day for the first 8 months of Reese's life. Then one day, while waiting in the ER for the Neurosurgeon, I read "The Power of the Powerless". It was a book written by the sibling of one very special boy. 5 hours later, through a deluge of tears, I finished that book. I can't tell you too much about it except that the author always referred to his brother as "the angel living with me." <br />
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My attitude changed that day. I shifted my attitude to see Reese as the angel in our house and chose to see all the beauty that is afforded to those living with an "angel." She is the light in our home and everyone here agrees.<br />
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She is a gift. A bright light. A source of peace and calm. Pure love. Joy. A blessing to everyone in this house. <br />
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So to our family friend, the kindest way I can answer your question is, "No, sir. You are sorely mistaken."Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3508967291920696489.post-55182699808418937362014-09-06T16:12:00.003-07:002014-10-05T06:35:32.177-07:00When Life Doesn't Look The Way You Think it ShouldWe packed up in the middle of the night. Pulled the girls out of their bunk beds and quietly left Flagstaff and our Labor Day Weekend vacation in the middle of the night. Reese was struggling to breathe. We needed to get out of the altitude quickly.<br />
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The girls had plans to make breakfast with their cousins in the morning. Olivia and the new neighbor friend had planned to play a game. Those plans were stripped bare suddenly when we peeled them away from their snuggling cousins that night.<br />
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I would say, typically, I am a “suck it up, sweetheart” kind of mom. Not a coddler. But this night my heart was aching. One more time they had to miss out on something they looked forward to because their medically fragile sister needed attention.<br />
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I really don’t know if people realize it, but sometimes our life is hard. Not complaining. Pretty sure only a small group of people really GET what I’m saying. Our days are filled with therapies, doctor’s appointments, a constant stream of to-do's and concerns, and lots of attention on Reese. And those are the days when we are not fighting for her life in ICU. It can be really hard, no way around it. I love her with every fiber in me, and if I loved her any more I would explode. And let me say that she is one of my life's greatest joys and sweetest gifts, lest anyone misunderstand. But she does require a lot of time and energy. True story.<br />
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We don’t have the freedom to run to the mall, take a trip to Hawaii, or even run out to get toilet paper without scheduling it. It’s just the way it is. The siblings sometimes pay a great price. Life is not as carefree as I wish it were for them. They worry about their sister dying. And I hate that they worry about that. <br />
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So we were driving back to Phoenix that night in the quiet darkness. My heart hurt for them. Olivia teared up as she said, “I didn’t get to say goodbye.” <br />
“I’m so sorry you guys. I know you had plans. Thanks for getting in the car,” I told them. Then I turned around and held back some tears. They were great sports about it, but all I could think was it’s really not fair.<br />
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After some silence, I heard Faith say, “Thanks for being a great mom.”<br />
“What do you mean?” Pulling children out of bed in the middle of the night didn't seem like it qualified me for such praise.<br />
“Thanks for doing whatever it takes for Reese.”<br />
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Wow. Not what I expected. She gets it and she wasn't thinking of everything <i>she</i> was missing out on. A glimpse of selflessness. Thank you, God.<br />
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Yesterday, while driving Mia to a rehearsal I quizzed her about her childhood. <br />
“Would you say it has been awesome…good…or just OK?”<br />
Yes, this has been on my heart since that middle of the night drive.:)<br />
“I’d say it’s been awesome.”<br />
“What would you say has been the best part of your childhood?”<br />
Without hesitation, she answered, “When Reese was born.”<br />
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It was one of those moments when I felt like God had come up behind me to rub my shoulders and say, “It’s OK, Sweetie. I've got this.”<br />
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You know what? Just because life doesn’t look the way you thought it would doesn’t mean it can’t be good. And sometimes those things we think are the hardest on our kids are the things that are making them awesome. Refining them to unselfishness. Teaching them to overflow with compassion and love for other people. I wouldn’t have designed it like this. But God has, and He is overwhelming me with joy as He unveils pieces of his mysterious ways when I least expect it.<br />
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Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-3508967291920696489.post-82469269033543492722014-03-31T14:21:00.002-07:002014-04-02T12:04:00.791-07:00Always Pray and Do Not Give UpWe survived. Let’s recap.<br />
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Reese was taken by ambulance to Phoenix Children’s Hospital on March 9 with acute respiratory failure. What started as a cold, quickly turned into Pneumonia. Pneumonia took a toll on her body and she ended up on a ventilator in the middle of the night. Honestly, I wasn’t sure we were leaving the hospital with Reese at that point. I called Mario after they intubated her at 2:30 am, and we cried together and submitted ourselves and Reese to the Lord. We encouraged each other that if this was it, God would take care of her and us. It was a low low. Doesn't get much lower than that as a parent. Just sayin.<br />
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But she pulled through. She spent 7 long days on the ventilator. She got a little better every day, with a few scary moments mixed in. What they didn’t tell us that first day was that the ventilator was doing 100% of the breathing. So glad they shielded me from that frightening fact.<br />
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My goal when we entered the room in the PICU was to survive Pneumonia. I had no other goals. I wish I could say my goal was to glorify God or to grow spiritually, but no. It was primal. It was to save my daughter’s life. <br />
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There is a desperation in that place. An all out cry for help. And God met me…like he always does…but I still doubt, sometimes, that he will...THIS TIME.<br />
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A dear friend sent me a podcast to listen to. Turns out I listened to the wrong one…but it turned out to be the right one. Because it was the one I needed to hear at that moment. This gal talked about prayer. And power. And that was what I needed to hear. She reminded me about the Parable of the Persistent Widow in Luke 18 and how Jesus told his disciples to “always pray and not give up” like the widow who kept asking the judge for justice until he finally gave in…really because she was just driving him crazy with her unrelenting requests! And she reminded me of James 4:2 where James reminded believers that “we do not have because we do not ask God.”<br />
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I cannot tell you how many times over the 16 days in the PICU I laid hands on Reese, and through tears I said to Jesus, “It’s me. I’m that persistent widow. Reese’s mom. I’m asking you to heal her lungs. It’s me again. You told me to ask and keep asking. And I really believe you will heal her." And he heard me. And he heard you and the countless number of prayers from family and friends around the world. And He healed her.<br />
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On day 14 something happened. That very slow progression sped up into high gear. The doctors couldn’t explain it but her health improved dramatically, so much so that there was not time to discharge her from ICU to a regular room. 2 days later, she was ready to go home.<br />
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As we were packing up to go, Gigi, our Child Life Specialist came in to say goodbye. Her job is to play with the kids and keep the parents sane, I think. She had checked in on me every day and had been in the room during some scary moments. She said, “I don’t talk about God in my job, but I want you to know that if someone didn’t believe in God, they would after walking into this room. I can feel Him when I walk in here.” Tears streamed down my face. She apologized for upsetting me. I told her she had not upset me but completely blessed me. And I thanked her. <br />
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I was an occasionally crazy, somewhat delirious, sometimes stressed-out mom, living out my primal instinct to save my much-loved child. But God met me there because that is what HE does. He WAS in that room. He DID save Reese. He IS real. And He IS faithful to the end. So I'll leave you with something you need to remember today…pray and do not give up. Ask and keep asking. I can't say I always understand why, but God said so and I believe Him.Unknownnoreply@blogger.com19