Category Archives: Adjusting to NF2

Leaning Forward – Job 23:10

PLEASE NOTE THAT THERE IS A VIDEO MESSAGE AND BIBLE VERSE FROM MELINDA BELOW THIS SHORT UPDATE FROM OUR FAMILY.  🙂

Hello, Faithful Readers of Melinda’s Blog!  This is Melinda’s older sister (Melissa) here.  As some of you may have noticed, there has been a lull recently in Melinda’s blog posting, and we wanted to make you aware of what has been happening so that you have some context for her video message. On May 5th, Melinda went to the Children’s Hospital for her regularly-scheduled visit. She had been noticing some changes in her body, particularly in her leg.  She described her legs as “heavy.”  While at the hospital, her legs stopped working and she has been unable to walk since.  She was requiring in-home aides day and night prior to this, but now with this change she needs a minimum of two people assisting her at all times. She was admitted to the hospital for a few days and has since been transferred to a nursing home (8 miles from our parents’ house) with the help of her doctor.  In addition to her leg troubles, her eyesight has also rapidly declined to the point where she can no longer see to type on the computer, even with her magnifying glass.  She wanted to give you all an update, so we have recorded this message from her. We have transcribed Melinda’s video message for you all below as we know that her voice change due to deafness can be hard to understand sometimes, and there may be those of you who would just rather read than watch.  In the future, all of Melinda’s blog posts will be transcribed from video, but this is probably the only time we will actually post the video as well. The video files are so large and take such a long time to upload. We had trouble getting it to post.  For this transcription, I have typed out Melinda’s speaking word for word, including the fact that Melinda was crying during the video as she struggled to put her deep and raw emotions into words.  I have included all of her pauses and thinking phrases in the transcription such as “um,” “you know,” and “yeah” because we are also including the video with the transcription for this post. In the future, those sorts of pauses and thinking phrases will be omitted to help with transcription and the flow of reading. Other than that, all of the words in her posts will be Melinda’s own. I expect that most of her blog posts coming up will be given through a great many tears. She is being so brave.

Melinda wanted us to share the verse Job 23:10 with you along with her video message.

Job 23:10 —

“But he knows the way that I take; when he has tried me, I shall come out as gold.”

Here is the link to Melinda’s video:  https://vimeo.com/128215277

I would encourage you to watch the video first and then read the transcript after, if you are able.

VIDEO TRANSCRIPT:

Hi, Everyone!  It’s Mel.  I just wanted to say thank you very much for your prayers for me and, uh, my family over the past few days with all these changes. And um, just wanted to give you a little update on things… how things are going.  For one, it’s been one of the hardest changes that I’ve ever had in my whole, you know, past 13 years with this disease. And um, you know, even though I felt that God was preparing me a little bit in the mind with different things… different blog posts before, different, you know, dreams I was having, and different things I was learning… I just never expected some of the ways of the things that I was praying for, like getting more help at home, you know, so Mom can do more things.

And, you know, I could feel things in my body changing. I knew, you know, my left leg was getting a little… little bad, but I didn’t think at the time that I would have, you know, any problems with it. And, you know, I obviously have known that my eye has been going down, but I never thought, you know, all the combination of everything. But it changed so fast! It just, overnight! And, um, (sob) it’s been hard. (through crying and tears) You know, you go from being, you know, able to do things like pick my own lunch, and what I want to drink, or when I want to go to bed, different things like that, to um, you know, all the sudden feeling like I have to follow, you know, “the code.” Everything else here, they do, um… you know, all at the same time. You know, everyone eats at the same time, we all eat the same meals, you know, we all go to bed at the same time. And I just… I’m not… I haven’t transitioned into that.

And I’m really struggling with being a younger person here, and, um, trying to still be that younger person and not be jealous of these older people who have had their lives to live. And now all of the sudden, you know, I’m here like one of them. And not being able to do things that I’ve wanted to do like, you know, still be with my family, and have family meals (crying), and, (sob) you know, stay up talking, and different things like that.

And I’ve been very blessed with, you know, already friends visiting, and my family coming, and different things like that. But it still gets very lonely here when… when people leave. And (sniff) I’m just really struggling with (sniff) the thoughts of the… um… I have to be here for the rest of my life! And (sobbing) I’m already sick of bedpans and having to wait otherwise to use the bathroom or, you know, brushing my teeth in the chair cause I can’t get up to use the sink. And, you know, different things like this. And (sigh) I just sometimes think of, you know, if this is… if this is seeming like its only been… seeming like it’s already been forever, then… you know.

I’m just really struggling with (deep sigh)… being here. I just… (sniff) having so much time to think, because I really can’t do much with the lighting in my room during the day time. And I like try to do different things, but it’s not like home where Mom… I can just be like, “Hey, Mom!” She comes around and helps me pick up my pen. You know, I drop a pen here and I have to wait. And there are so many other people that have needs too. And I just go from struggling, like I take too much time… to struggling to… like, I wanna be still be doing things… you know.

And um, (sigh) I’m also struggling because I’m having a really hard time with my vision going down. I’m having a really hard time reading my Bible on my Nook, and even seeing my pictures in my prayer journal. And sometimes I have a really hard time sleeping at night. And I know… um… (through tears) I know I’m going through some spiritual things (crying), even though I have been trying to, like, you know, remember Bible verses and sing different songs in my head. I just… (sniff) I’m really struggling with that aspect of knowing that sometime I’m going to have to stop reading my Bible, and realizing that maybe, like, I should have (sob) hidden more of God’s Word in my heart. And I don’t think (deep sob)… I don’t think I’m ready, ready for this.

I just… (sob)… as much as I see how God has planned it, and He is going ahead of me (sob) and planned different things, like (sniff) having, you know, different people here, you know, ahead of time. And I’m, um, you know, in a very good spot, and I am close to home, but it’s not the same. And just, (sniff) still having a hard time trusting that, you know, I still have a purpose. (sob) Because right now I’m really struggling with (sniff) just sitting around all day and feeling like I’m not doing anything. I just… it’s a mind thing, and that’s where I’m really struggling with that. And I really… I miss… I miss just the way things were. But you know (sniff), um… you know, when I stand, I’m supposed to, you know, “lean forward.” Because, you know, when I lean back it only makes it harder for the person helping hold me to, you know, get to the potty chair or something. And I have to lean forward, and I know that, you know, this is kind of the same in some aspects. I can only lean forward, because… and, you know, for some reason I don’t understand. (sob) And I know that, you know, (sigh) God will keep me going forward through it. And I can’t physically… I can still see, but I can’t physically see what comes next. (deep sigh) But I just have to keep “leaning forward”… trusting… trusting that, you know, that the new direction has something. And that I’ll still see it in my heart, and spiritually too.

And I would just like to ask for some prayer for some (sob)… um, some peace (sob)… um, because it just… (sob) it just came so fast! (through crying) And I knew, um, changes were happening, but usually they are slow changes. And it’s just been really hard adjusting. And I just miss family, and communication, and living outside, you know, not only just the chair, but just outside. Doing things like I used to be doing. And if you can just continue to pray for the peace for me, and the transition, and for my family too, I’d really appreciate it. And I do thank you for all the prayers and everything… and flowers, and gifts, and visits, and encouraging notes that you’ve already sent. I am very blessed, and I’m trying… I’m trying to see that, and, you know, keep that in mind. And I just wanted to thank you for that. And I want to keep you guys updated. (nodding) And, um… yeah.

I do hope that, um, you know, in time… (deep sigh)… I can blog about some other things that I’ve been, you know, thinking and learning. And hopefully, you know, that God will show me soon, (sigh) you know, maybe more about a new direction. So thank you again, and um… I’ll, um… talk to you later!! (smile and laugh)

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New Strokes, Old Brushes

I painted for the first time today since the August art show. It was different, difficult more than ease: Part of it is the language of art…you don’t use it, you lose it. Creativity needs to once again flow freely in thought, in inspiration and joy without the distress of the meager blending details of perfection in abstract strokes. But it was there, as if the beauty of blended colors was a loss in vision as well. I still see color, but in different hues. In the right eye it has all but faded in the shadows–it is only when colors, already bold, are in certain lighting that it is vibrant neon color and I say, “Now that is blue!” It makes shopping at Wal Mart and Target a color game.

It’s safe to say that the eye changes didn’t alter how messy I get when painting..at least there was one consistent factor. I even got paint on my walker handles; such normality in the routine! As I went to scrub off my color-coated hands, I thought about the day when I did my first painting for Dad’s birthday. Music was beginning to fade and I was angry. I felt a void–but in that first painting, I felt the joy like music. Today as soap foamed in the sink, I asked myself if I would be ready for the day when painting too fades like music. Would I recognize the next joy God may bring my way? Right now, I am not sure as it was just a momentary thought. I don’t think it is something to dwell on, but I also don’t think I should ignore it either; it is something to remind myself to cherish–brush each stroke with joy knowing that it is a gift given to me in a time of need and by sharing the gift, I share the same hope and joy to others.

I wanna sing.
I wanna fly.
I wanna see from Your side of the sky.
I wanna love.
I wanna stay,
Wanna be close to You
Long after the music fades.

Shaun Groves. “After the Music Fades.”

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Facial Expressions

The other evening, Dad took me out for a dinner and dessert date at the local Stoney Creek Roasters in town. I was expecting a full house of students studying, but it was seemingly a quieter evening, until we started leaving at the end. I should have thought “college time”–studying in a coffee shop that is open until midnight starts around 8 p.m. Oh the days those were, such memories! 🙂

Anyway, when we got inside there was a few people in the order line, so Dad and I went into the ice cream room to see what flavors they had and get a head start in decision of what we would want for dessert. It didn’t take me long…I chose Sticky Bun. It just sounded good. We got back in the main line and since they didn’t have the potato soup that night, I had to read the menu. Understand, even now, my computer screen is zoom on 200%, so that I can type and see my errors without squinting. The menu wasn’t bad…it had dark bold letters, but when reading anything not on a screen, the hard part is finding the focus point–where the two eyes meet and see clear.  Once I have it, I must hold it or I start the process all over again. Such was the case in the menu, and I guess it might have also looked a bit strange that I held the sheet right at my nose. I could read turkey and ham, but the sandwich options otherwise were hard to distinguish. I did read “sauerkraut” and quickly skipped that line and just settled for a the turkey, bacon with some sort of dill cream spread.

Dad and I had a good time. We didn’t turn many discussion topics, because the ones we did discuss, half the time Dad was finger-spelling and I was playing Crosswords in my head putting the words together and getting the story down. Dad was very patient. It did cause for some good laughs too. Dad went to get our ice cream while I finished my sandwich. I was pretty proud that my first half had survived mass chaos–bread is my downfall in eating. It doesn’t matter if it is a bun, breadstick, tortilla, toast, sandwich–it is all the same–not only do my hands have a hard time holding in a proper grip, but I also can’t just bite down…I have to wiggle my teeth to get the bite, which causes the bread to move and the grip to fail and you get the picture. I’m a messy eater when it comes to bread.

I am ungracefully finishing my delicious second half when I notice college students have started to surround the room. There was a guy seated two tables over who looked to be in serious thought as he took a sip from his large coffee cup and looked around the room. Dad wasn’t back yet and I suddenly felt embarrassed. My napkin had been very well used, but on my last few bites, the dill spread had oozed out all over my right hand. I always have bad timing in social aspects and don’t purposefully try to appear as an ungraceful eater, but the moment I am licking my fingers is the moment I noted the college boy sweeping gaze around the room and I know he saw me. I quickly grab my napkin that isn’t helping much and gain my composure…then it dawns on me…without glasses, I can’t see people’s facial expressions unless they are right in front of me. I smiled and sort of wanted to clap my hands in delight, because for once, it didn’t matter if he saw me licking my fingers and gave a look of shock or disgust or amusement or maybe nothing at all; but for me, it was a changing thought.

I won’t lie–even though I can hardy see details of me in the mirror, I still struggle with being self- conscience–shifting more to the effects of my disability state when in public places. But why should that matter…why should I be so self-conscience of what others “see” when they do not see the whole picture. Even I can’t. And because I have no control over my physical state, why should I consume my mind with thoughts of how to control it otherwise? It’s extraness. I need to remember what is truly important, what truly matters.

What am I gonna be when I grow up?
How am I gonna make my mark in history?
And what are they gonna write about me when I’m gone?
These are the questions that shape the way I think about what matters

But I have no guarantee of my next heartbeat
And my world’s too big to make a name for myself
And what if no one wants to read about me when I’m gone?
Seems to me that right now’s the only moment that matters

You know the number of my days
So come paint Your pictures on the canvas in my head
And come write Your wisdom on my heart
And teach me the power of a moment

*Taken from song, “Power of a Moment.” Chris Rice. Past the Edges.

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“What are your needs?”

I don’t know why or when I started this,, but somewhere along the spring days into summer, I started greeting Muffy with the question, “What are your needs?” Depending on the time of day or weather conditions or my own jolly (or not) attitude, my question is the same and I usually know what his needs are–food, being pet, or wanting inside. He sits at the back patio steps and when you walk past, he glances at the door knob, as if hoping it magically opens the door when we do not follow through with his requests of a cute “meow” gesture. Muffy is easy to lip-read.

At first, the question was just a funny randomness my family listened to me say, probably more times than their wanting in a day. They still hear, “Good grief,” or an occasional, “Epic fail!” My new favorite is quite studious, “Ludicrous!” Then in utter frustration, I laugh. Muffy’s question is now somewhat a joke on me. Not that we say it as a joke, but it makes the frustrating moments more at ease with a smile, if even just for the moment. Where Muffy’s needs are obvious, mine are not–and I still have a hard time communicating them.

“Thus disease is helping me be assertive,” I tell Marcia in our conversation this morning. I said it in a victory chant fashion, and when I looked across the table, Marcia’s facial expression said it all: no. I quickly added, “I am learning.” That sounded more accurate. I am not an assertive person; it conflicts with my personality. Even trying my hardest, I rank high in the daily needs. As my head reads the not-yet-asked-for-help needs list, I stand with hand clenched to the walker and do a “I hate being so needy!” dance…just bopping up and down as if doing PT exercises. Becoming dependent is where Satan is using my personality against me as I learn to let go of myself. I don’t like being assertive, because I don’t want to be bossy or offend. I like to help, not feel like a needy burden. Guilt is my number one enemy in this disease.

As I learn to speak my needs, I find myself in thoughts of how I can meet the needs for others. “Meeting needs” is like the phrase, “having a job.” I think in physical, tangible terms…probably because those are my needs. When I had to end my working days at Target, I struggled with not having “a job.” My personality and self-conscience was afraid of what other people would think– I didn’t want to just be one of those “unemployed, twenty-something-aged kid” loving at home. I see now the pride in that and I have been completely humbled in living at home; the sacrifices made by my family to met my needs can be more than a job for them. Yet they never complain…even when it is not the best of situations.

I believe God made us needy. We need each other and most importantly, we need Him. God desires for me to be close to Him, telling Him my needs and He listens–yet, even as I speak, I must be still and listen. God always meets my needs, even if I don’t ask or often in better ways than I would have imagined; a parallel…I see this in how my physical needs are met through others. As I verbally share my needs, I must work harder at being still–“listening” with my heart to respond–in hopes that God can somehow meet an unseen need in their life through me, just being me.

Salt and Light by Amy Grant and Wes King

 

We all need a little salt, need a little light

Need a hopeful word, shining bright–

We can be a little salt, be a little light

In this darkened world,

We can shine, oh oh, shine so bright

Shine, oh oh, just like the starlight,

Shine, oh oh, shine

Shine, oh oh, shine…the light.

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Chill Winds

It seems to have changed overnight. We went from mid-70’s, shorts and tee-shirt attire to pants, sweaters, and scarves all in one weekend. Suddenly, Mom is pulling the remainder of her tomatoes from the garden before frost sets and soup is now a comfort food…it fits the atmosphere, the season, like a cup of tea in the evening…there are good things in every season. I just have to see them with a better attitude.

I haven’t seen it here–which has surprised me: birds migrating. I saw flocks of birds migrating south to warmer weather in Colorado. As the weather suddenly changed here, I thought of the migrations…the flight–almost escape–from the present condition to warmer, winter luxury days. I almost envied it, because I have no escape from my present condition, no luxury of easy days ahead.

And the thought came to mind: “So this is it. This is what it is.” I knew the right eye surgery would not fix everything, but maybe I was hoping for more. It seems that my entire body took a sudden change, like the weather–it just did with no warning and now it is different. I was trying to retrieve a small container of trail mix from the pantry the other evening and was having problems gripping the container while balancing, practically dropping it all to the floor. It is a common sight. But as I turned to grab my walker handles, Mom was behind me. Already having a frustrating day, I mumbled, “If this is what it is going to be like for the rest of my life, it stinks.”

The next day I was typing a letter to my cousin who, at age fourteen, said a few ideas about what she wanted to be when she grew up, but wasn’t sure. I sat contemplating thoughts, because I am still at that stage in my own life…not necessarily what I want to be (I have plenty of those old dreams), but what God needs me to be. What am I supposed to be doing with my life, because the world around me is moving and people’s lives seem migrating from one thing to the next and I feel I often just sit missing something.

After much thought and looking at my own heart, I responded:

You said you don’t know what you want to be when you grow up and that is okay. I am 12 years older than you and find myself out of the “world of work” not knowing what I am supposed to be doing and often get frustrated or antsy that I have what I see as limitations. It is not easy, but I am learning to see that there is so much work we can do every day for God if I let go of what I had always dreamed for myself of a future.

It is one of the fine lines of faith I walk daily. And usually the frustrations win. As I re-started Francis Chan’s book, Crazy Love, this morning, I was reminded of the importance of standing in awe, complete awe, of God. I don’t often do that, if at all…too many distractions, too many wishful migrating thoughts. It is terribly difficult to even look or think of my body with an awe of seeing it as God’s creation, perfectly woven from before birth. The physical I now live is not what I may want, but in every season, there is good. I just need to live it in a better attitude, full of awe of God’s Goodness.

And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

Colossians 3:17

 

 

 

 

 

 

 

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Hello, my name is…

I’m horrible at introductions. People say their names and, most often, by the time I say, “I’m Mel. It’s nice to meet you,” I have entirely forgotten their name or never fully understood it in the first place. Introductions would be a way for me to practice assertiveness in just simply asking for clarification or repeating of the name. But I never do, unless my family is present with me, in which one comes to my rescue and will finger spell and lip-read until I get the name and/or pronunciation correct. Even after all this, I still stumble to remember. Names.

Names are special–even nicknames. “Mel” was never even mentioned while growing up. My high school friends called me “Minda” and Dad has always loved his for me–“Minder.” 🙂 It wasn’t until my freshman year at CCU that Mel came to existence. I think it started as a mix of decorating our dorm room, “Cal and Mel’s Room,” along with the street church kids. Our leader had an abbreviated name as well and the kids just took Mel and that is who they came to call me. Between friends, roommates and street church–Mel fit. I liked Mel. I think my full name–Melinda–is a beautiful name, but for me, Mel fits. 🙂

It was also in college that I came to use sign language and interpreters for hearing needs in the classroom. My sophomore year, a deaf man transferred to finish his degree and we had one class together that Spring. As I got to know him over the next year, he gave me my signing name. In the Deaf culture, one must be deaf to give another a signing name (unless you are going into interpreting or such.) I am not sure why this is,but I remember my ASL teacher, who was born deaf, telling us about different deaf culture things. Another one that I found funny, but now that I am deaf myself, can see how it makes sense: if two deaf people are talking or even just a deaf person signing to another hearing person, it is considered rude for a third person passing through to duck or lip an, “excuse me,” because it is actually more of a distraction to the conversation than if the person just quickly passes. A complete opposite of the hearing world conversation.

Conversations, like names, can get confusing when watching me. Because I was born hearing and didn’t go fully deaf until this year, my speech–though soft–is good. I do struggle with different pronunciation aspects, but then again, like a history of falling, I have a history of funny word mishaps and pronunciations even before I got declining hearing. Contrast, my deaf friend at CCU was born deaf and taught himself to speak; he too had a soft voice, but his pronunciation of words was remarkable! Unless I am using an interpreter, I lip-read; as I mentioned, my hands and sign language don’t agree anymore, especially in finger spelling…which is probably why I dread introductions with interpreters, because it is proper to first finger spell your name and then show your signing name. So much for manners–I skip the finger spelling completely and just show my signing name. 🙂

Before we graduated, my friend gave me my signing name. It is an “M” brushed by the side of the cheek, starting close to the mouth. He said he chose this, because of my smile. I think it is a very special signing name and even though I have now lost contact with him since moving here, I think of him when I use my name. I have been thinking about signing names for many months now, because I have the honor of giving my family signing names…which will also cut the finger spelling time and questions in conversations if I need clarification of the name. I want, like my signing name, the signs to be special. My problem is that there are 4 “M’s” in the midst of being creative, but I haven’t stopped in search of their names yet.

So long as the memory of certain beloved friends lives in my heart, I shall say that life is good.

~Helen Keller

 

 

 

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Rugby Church

Rugby is a strange and fascinating sport. It actually reminds me a bit of the way Calvin and Hobbes play Calvinball in Bill Watterson’s comic strip–the set up structures and plays always shifting to what seems like a new sport. Saturday night, I found myself relaxing and since I had finished a book the night before, I wanted a change of atmosphere and decided to browse Netflix on my Nook instead. As I scanned some of the movies already pre-selected from earlier this summer, I found a few that seemed funny but ended switching three times until I found a movie that seemed a solid, not just a movie, sort of story. The movie: Forever Strong.

Forever Strong is a story based off true events. The main character, Rick Penning, is a 17-year old Rugby star on his father’s rugby team. Living a party and wild life off the field, Rick gets his second DUI and is sent to a juvenile detention center where his relationship with his father is scattered and Rick is anything but skeptical about life change. At first. A counselor at the detention center was the first to notice Rick teaching a group of other detention boys the fundamentals of the sport,

Rick: Now, if you get tackled and you go down, you must release the ball back to one of your own guys. Then he takes it and goes. We don’t stop. There’s no huddles, no time-outs.

Detention boy: So, it’s kinda like football and soccer?

Rick: It’s kinda like Rugby.

As time continues towards Rick’s 18th  birthday, if he does not turn his life around, he could end in a state prison. But a rival rugby team’s head coach, Coach Larry Gelwix, sees potential for the better in Rick and offers him a chance and playing position on his team. It is not the field and wins that essentially matter to Coach Gelwix, but first, the player as a person off the field…the lives of his young men and who they become are what he puts as top priority. For Rick, this is a new philosophy. Over the course of his detention time, he learns life change…a better change. Tears, sweat, laughter, sacrifice, pain, hope…Rick’s once rival team, became more than just a rugby team on the field. They became brothers, bonded by a desire to be better in life, to get back on their feet even when they didn’t think it was possible.

As I watched the field action, the ruthlessness of the sport made me think of one thing: where on earth are the helmets and shoulder pads and protective gear? All they had was a mouth piece that looked much like a night retainer you wear when sleeping. Soccer can get crazy, but they don’t simultaneously tackle like football players either. I now have a greater respect for rugby, even if I don’t fully understand the rules and plays of the game.

Like Rick explained in his rugby fundamentals, life rarely gives time-outs. If any at all. It can be ruthless, being knocked down again and again. As I somewhat marveled at the players determination against the rivals and the pain, I thought of my own protective gear. In Ephesians 6:10-19, Paul urges the brothers and sisters in faith to put on the full armor of God, “ For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places,” (v. 12). My own armor of God is always there, but lately, I have been living days where I don’t take time or effort to fully put it on, guarding myself…leaving myself prone to the “flaming darts of the evil one,” (v.16). 

I have been given the strength to stand, again and again. And I will continue to be knocked down, again and again. Who would have known that a simple sport movie would remind me of what is important, what comes first as top priority in life…who I am in Jesus Christ. I still and will have my days, like the frustrations of the hands that I recently posted, but it is part of the getting up, continuing on, living life to the full.

http://www.imdb.com/title/tt0840322/

http://highlandrugby.net/index.php/11-coaches/6-larry-gelwix

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