Category Archives: Muffy

Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to¬†say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” ūüôā

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single

hearingadvisor.co.uk

This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I¬†am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my¬†stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the¬†Phonak Cros, God links together the¬†my disabilities with His¬†abilities and¬†carries them all in¬†His hand. It does not¬†stop my life from¬†tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.

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Little Joys!

Have you ever stopped for a moment to listen to the water as it drips out of the faucet? What about the sound your sheets make when you ruffle them as you make your bed in the morning? The sound your fork or spoon makes against the dish; the taps your fingers make on the keys when you type; the brushstrokes when you paint on a canvas; the click of your eye shadow case as you finish getting reading in the morning; or the sound of pages turning as you read a book? Little joys!

Yesterday I got my hearing aids fixed! ūüėÄ Funny is perception. It has only been a mere three weeks since they went from usable to unusable overnight. It seems much longer than that! The hearing aids currently are back to where I had them set before–I have them turned up all the way though, as we did not adjust any of the settings due to my last hearing¬†test being in February.¬†At that point in time, my¬†left ear had¬†gunky-dark fluid behind the ear drum and¬†I¬†received some¬†medicine to see if¬†that¬†would¬†clear out. I had my ears checked once and it seemed to be helping¬†slowly. It was not until after the spring break that the tinnitus¬†(insane ringing in both ears) became increasingly¬†loud.¬†So there¬†is much difference in my hearing since February.

Changing the levels now seemed¬†in wrong timing, because¬†I have my MRI/hearing test next Thursday the 23rd. My¬†regular doctor appointments are the following Thursday the 30th. As far as my hearing test goes, I am thinking my left ear has not improved any even if the gunky¬†fluid is out¬†from behind the ear drum. Even with my hearing aid in, I am not hearing much (though I placed it in first this morning and then shut the lid to the case and heard it clear as day…guess that is a good thing!) I do know, however, that I depend on my right ear/hearing aid the most. It used to be the opposite, but I can¬†tell already¬†that my hearing aids are helping…maybe n0t improving¬†my balance but I have not run into as many walls today as I round the corner–little joys!¬†And, after going three weeks with no hearing, I think I did¬†improve my lip-reading and¬†we started incorporating more sign¬†language at home.

My dad is sneaky. He¬†found this¬†website where you can look¬†up words you need and they give you¬†a¬†video¬†of the¬†sign.¬†Last weekend, we had company and at Sunday’s lunch we had the typical tuna sandwiches, chips and salsa, carrots and grapes and cookies for dessert. I see my dad pull out his phone¬†as the others at the table are in conversation. Not thinking anything of it, I return my attention back to lip-reading but sort of just sit in a daze. (I get bad at that. I stare like I am lip-reading but I am not paying attention at all in my mind! I need to work on staying focused!) Anyway, dad never waved for my attention or anything, he just moved his hands. I knew it was a sign, but since he did not mouth the word, I had no idea what it was. Instead of guessing or pointing aimlessly at the table, I just said, “I don’t know what that sign is.” It was grapes!!!

I should have remembered. I learned it in ASL I. Although dad was trying to be sneaky and not ruin the conversation at hand (I think I did ūüôā ), our table then erupted in sign–from discussion of ASL vs. ESL or SEE to guessing¬†the¬†word being signed¬†(as my dad passed on his phone to my sister who put the website and¬†my memory to good use!) Sometimes these conversations are awkward for me as I feel I should be the one to know all the signs (I don’t), but because our guests¬†both¬†had reference¬†and previous experience to sign language, we¬†were able to¬†work through and remember words with sign together.

During these past three weeks,¬†I now¬†have experienced both sides of the spectrum in terms of hearing and hearing loss.¬†Just the other day I read this quote. I think¬†it sums up my thoughts the best way possible:¬†“Heard melodies are sweet, but those unheard, are sweeter.”¬†~J0hn Keats.

I am happy to hear, thankful to hear, liking¬†to hear…and¬†I think it¬†is because¬†I had none–that¬†I appreciate it more!¬†Little J0ys!!

PS. This s0ng came to mind this morning:

Carolyn Arends, “I Can Hear You”

Leaky faucet dripping in the kitchen
Rubber squealing — watch out in the alley
Mr. Marley’s probably late for work again.
Birdie singing — telling me to get up
Such a soothing sound floating on the wind
I just keep listening

Funny how You speak to me
In such mysterious ways

Chorus:
I can hear You
I can hear You
It’s so amazing how Your voice keeps breaking through
I can hear You

There’s a church bell ringing out the hour
Like an old friend calling through my window
With the laughter of the children playing down below
You’ve got a way of getting my attention
In the rhythm of life, everywhere I go
Somehow You let me know

If I’ll only stop to listen
You’re in everything

I can hear You
I can hear You
I can hear You
I can hear You

Music video: http://www.youtube.com/watch?v=GtsWtNS-3Og

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Even in the grey.

In the very place where God has put us, whatever its limitations, whatever kind of work it may be, we may indeed serve the Lord Christ.

~Elizabeth Elliot

This¬†morning was lovely; 6:45 am and I am wide awake. (Ok, the Charlie horse cramp in my right leg is not the greatest alarm clock, but it got me out of bed.) I go to the kitchen to make¬†a cup of coffee and notice how bright it is outside. No sun…in fact it was raining. The colors were vibrant. The grass, trees and shrubs look greener; the blossoms a deeper shade of pink; the tree swallows more royal blue¬†as they flew in big sweeping motions around the deck and the robins a deeper chestnut as they hopped in the grass feeding on bugs. The only thing that looked the same to me was Muffy–but we’ll give him some slack. ūüôā

As I feed Muffy¬†his breakfast, I breathed in. Refreshing. The grey skies reminded me of limitations, as even my own¬†physical disabilities were on¬†my mind the night before. It is easy to see the color grey and connote it with¬†seeming dreary, as if¬†it is not possible to¬†think that¬†a day without blue skies and sunshine can be beautiful. But it was. In fact, I don’t think any amount of¬†sunshine or clear skies could have replaced the atmosphere that lingered today. Life¬†can seem grey. I question what I am doing¬†or¬†will do in the future; I question about health or finances, about where to serve or what book to read next.¬†It does not have to be this way; I was not created to live this way.¬†I live in beauty, because in the days of grey, I have been given hope and a purpose. (Jeremiah 29:11-13)

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Unorchestrated.

[Adj: Not orchestrated; unarranged or off the cuff]

I would venture¬†to say that if I wrote this blog a few weeks ago then it would have had an entirely different perspective. I would have quoted to you lines from the Grinch: “Oh the noise, noise, noise, noise, noise. There’s one thing I hate, all the noise, noise, noise, noise!” Or my favorite Finding Nemo: “Mine. Mine. Mine. Mine.” The seagulls only ever quote one¬†word the entire movie; must not have been difficult to learn their lines. Nigel, the pelican, is about to gulp down his breakfast. Annoyed at the seagulls, he turns and states in blunt authority: “Would you just shut up?”

When my hearing first started the extra editions of obnoxious noises and rhythmic patterns in my head, I had to force myself to find humor to keep myself from tears in most conversations.¬†These two quotes above are most often what I thought. It¬†was and is probably not very obvious to anyone¬†(except to¬†my family)¬†that¬†I¬†am struggling to hear,¬†most¬†often¬†past the extra noise. I put my emotions in¬†the incognito, like the Penguins of Madagascar’s secret tunnel digging at the zoo:¬†and I feel I¬†hide the emotions well, until I¬†can no longer conceal it.

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Communication. Hearing. Deafness.¬†My thoughts seem to be consumed most often about these words, their meaning in my life and how to handle them.¬†I first started hearing a high-pitched ring in my ears in the eighth grade. I grew to ignore it; it really did not distract me or play any significance to my communication even when wearing hearing aids. I don’t think I ever really thought much about the ringing, unless it was louder than usual–in event I had a headache or something. Fast forward ten years and things started to change soon after we returned from our spring break vacation. I noticed two different¬†rings. They both had different pitches and instead¬†of just a¬†constant¬†steady ring, they made¬†patterns almost like a broken¬†record. This is where my first annoyance started. And I thought¬†of the Grinch.¬†I thought¬†of Nigel.

NF2 is a disease where you often¬†feel complete isolation¬†in dealing with¬†the different side¬†effects caused by the tumors; but what I should know¬†or realize by now is that¬†I am not alone.¬†Maybe there are a few extremes, like my sweet-smelling aroma–which¬†I still smell!!!¬†But the ringing in the ears, also called tinnitus, is common among other people with NF2. However, before I knew this, I finally had the courage to ask my friend–who also has NF2–if she had ringing in her ears. In our discussion about the different noises we hear, we both described them in terms of musical instruments or notes–which¬†I thought was fun. And then¬†I realized it is yet another area in my journey with NF2 where suddenly I am no longer isolated…after all these years of thinking that I was the only one who heard excess noise in my head! Suddenly, my perspective started to diverge.

There is no “on” or “off” button; I will live with these noises my whole life. I walked in the kitchen last week and declared, “I am nearing Deafness; yet I will never sit in silence.” As many days as there are of complete frustration in trying to communicate, even just with my family, there are other days like today where I hear the noise but it is tolerable. Maybe it is because last night I sat out on the patio and waited for Muffy¬†to finish his midnight snack. I thought to myself about all the noises and patterns in my head, simultaneously playing their rhythms. It sounds like a 5th grade band; it sounds unorchestrated.

Then I laughed at the thought: “I wonder if any of the famous composers ever felt this way?” Hearing all the noises of the orchestra in their heads while compiling their notes together to become one masterpiece. How did they do it? I thought of Beethoven. His deafness never stopped him from becoming a world-famous composer. I can’t destroy pianos like he did, but¬†in waking up this morning, I realized that the piano is one sound and melody in my head that I hear. The tinnitus is changing; last week it was the sounds of trumpets, electric guitars,¬†an accordion, and¬†clarinets (which were most annoying–sounded like someone was just blowing air in the horn and wiggling their fingers back and forth between two notes.) This week, I still hear the clarinets (though not as¬†loud)¬†and the accordian…but today I hear a regular piano. It has been like listening to a “rest and relax” cd you find at stores even though it¬†sounds more like a child just sitting down and playing random keys up and down the piano.¬†But it is a piano. It is almost refreshing.

Who knows–maybe tomorrow it will not be so refreshing; maybe I will hear something new or maybe not. These past few weeks have taught me about embracing change once again. So today I concluded that even though this may not be the¬†“music” I am accustomed to hearing, it is music and I can praise God for the noise–even the clarinets.

Praise Him with the blast of trumpets high into the heavens,
and praise Him with harps and lyres
and the rhythm of the tambourines skillfully played by those who love and fear the Eternal.
Praise Him with singing and dancing;
praise Him with flutes and strings of all kinds!

Praise Him with crashing cymbals,
loud clashing cymbals!
No one should be left out;
Let every man and every beast‚ÄĒ
every creature that has the breath of the Lord‚ÄĒpraise the Eternal!
Praise the Eternal!

Psalm 150:3-6 (The Voice Translation)

References:

Dr. Suess. How the Grinch Stole Christmas. Random House, 1957.

Finding Nemo. Disney Pixar. 2003.

*Image taken from http://www.religiousforums.com/forum/attachments/religious-debates/981d1171060978-great-news-hope-our-future-just-20smile-20and-20wave-20boys.jpg.

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Now what?

I have to be honest.¬†I have been procrastinating writing¬†this particular post since Friday. Oh, I tried. And it resulted in tears of frustration. Last week was rough. It was not a good week. I kept finding more things during the day that I could hardly do–the last being I could no longer clip my left fingernails. And¬†I use huge clippers! By Friday night, I just broke down physically and emotionally. I looked in the mirror and could not see anything positive.

Since the decrease of¬†my steroids¬†and now¬†back to¬†them¬†consistent, I have been doing¬†stable. I have full energy back most of the time (at least¬†I feel more energetic) and most of the weight I felt on my upper back is lifted. But I feel it affected my hands on a more permanent level: more weakness and numbness–especially in the right hand as my ring finger is now very heavy from the numbness. I also find I have¬†more curl in the left ring finger… when carrying things I don’t even use that finger. I am having a harder time opening things (especially in the kitchen), putting on makeup, putting in my earrings, unbuttoning my pants in a hurry, putting on thick socks, and typing. In a word: slow. I am getting slow.

I am thankful though that my back is not as heavy as two weeks ago. I have only had a few times of the extreme neck pain. At Thursday’s appointments, I saw some doctors from the Pain Management team. They prescribed these special patches that you place on your area of pain and it helps decrease the pain by numbing it.¬†I have not had to use them yet, but thankful for this because it gives me more freedom to still continue things I would have been doing otherwise. When¬†I use the rice pack, I¬†have¬†to hold¬†on to it or balance it¬†and that gets difficult. They also recommended I get a Physical Therapy evaluation and start PT. It was actually one of my questions as I have been trying to work on my posture–which helps balance, strengthen the back muscles, stimulate bowel movement and just help me in the long-term.

Otherwise, my main doctor and¬†I discussed the steroid pills in terms of steadily staying on them for the time being. I have decided against the other two chemo treatments at this time, but really glad that we discussed things…because it gives me a better understanding for if and when the time comes to reconsider the options. I got all my questions answered. ūüôā

Right now¬†I am frustrated and sad.¬†I got my left hearing aid fixed and my ear cleaned yesterday and I still cannot hear; Which means I am going to get a hearing test very soon! (Monday to be exact).¬†But it is hard. I now realize how much I depended on my left ear. I cried last night¬†when¬†my dad had to write down what he was saying so I could¬†understand. I think it is time for¬†me to take another lip-reading class and touch up on my sign language…although due to the hands, I focus more on lip-reading anyway.

Remember my very first post of the New Year? (You can read it here). I talked about seeing the birds in the winter…their safe haven being the butterfly bush outside my window. Here almost two months has gone into the year and how easily¬†I¬†have forgotten that¬†God feeds these birds and knows their¬†needs (Matthew 6:25-27). In my own life, I have felt like these birds–in the cold of winter, finding a safe haven among the little branches of the bush even though the wind and snow still are all around. Almost as if when I say, “Will winter never end?” But really mean it more towards all the current health problems…finding new daily obstacles is like waking up to realize you have to scrap off your icy windshield again.

Today my cat¬†led my attention to a¬†male¬†cardinal¬†outside on¬†the branches of the bush. When Muffy’s ears perked up, I looked and there¬†it was: brilliant red. ūüôā Of course all¬†around¬†outside was snow, but there¬†it¬†was…in the gusty, snowy wind minding¬†its own business. As the wind started to blow, the cardinal’s actions¬†resembled how I feel at the present moment: clinging for dear life. I watched for a while and asked myself, “And what am¬†I clinging to?” The hopes that my body¬†will go back to the way¬†it was before?¬†Quite possibly.¬†Like I said…this weekend, I just dismissed everything. I did not really even talk to God, because I did not know what to say and I was trying¬†not to be angry about all these new changes. I get tired of change.

I don’t want to be stuck in the ruts of winter months forever, so I do need a change. I need to change back to seeing hope in all circumstances. It has already started. I have been going around and making notes of things that are difficult and possible alternatives. My family has been there with suggestions and support. And I know that God does see my life living with potential. I just finally have to cling to that promise with my whole heart.

‘Let not your heart be troubled,’ His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Song: “His Eye is on the Sparrow.” To read more about the story of this hymn, click here.

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Happy 2013!

It came and went with just a stroke of midnight. The old year gone and now the new year has begun! ūüôā

Yesterday I kept thinking to myself, “What am¬†I going to do today that is different?” Last day of the year, might as well do something. So I did, but it just turned out to be a pretty normal day. I helped my mom vacuum/dust and did the dishes. Put away some Christmas lights. Caught up on a few emails. Enjoyed the evening with my aunt/uncle. And watched the birds play in the snow outside.

Cute little creatures! Mom had placed slices of oranges covered with peanut butter, sprinkled with seeds or something on the top. There they were–fresh snow¬†falling¬†in all around them and they just were having the time of lives eating and flying around. Others were seated near each other in the big bush right outside my window. For being so small, they sure can ruffle their feathers to make them appear two sizes bigger.

The bush is not in its time of glory. I would say that comes in the summer. It shoots up (after pruning) to such a height, sometimes it is hard to see out my window. The green leaves are a shade–even Muffy finds a cool haven from the heat. And the butterflies just can never have enough fill of the purple blossoms. It¬†was the inspiration for this painting I did for the art show (which now hangs in my room ūüôā ):

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On a day like yesterday I realized that this bush, more full of icicles than leaves, was a safe haven to the birds. They did not mind that it was pretty much dead from the winter months. At that moment it was what they needed. I sat there thinking. It reminded me of one of my favorite passages in Matthew, where Jesus talks about not worrying.

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life? ~Matthew 6:25-27, ESV.

My mind wonders at times. Not really “worrying” per say but I like to plan¬†ahead.¬†When my plans don’t go in the way I think they should, it usually turns into worry or frustration. Take last week for¬†example. Not what my¬†plans had in mind, but in the end it was for the better.

I never make New Year’s Resolutions…mostly in part by the end of the month I can’t keep them. So instead of a resolution, I decided to use this year and focus on what these verses say, “But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” (vs. 33-34.)

I know¬†I will not remember this everyday. But¬†I am hoping God sends me reminders, even if it just means taking more time to watch the birds from my bedroom window. “Worry does not empty tomorrow of its sorrow. But empties today of its strength.” ~Corrie Ten Boom

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I look forward to continuing the journey. More to come…

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Christmas all year long.

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Yesterday’s Christmas Eve service was the same as Sunday. Off I went Sunday¬†with my family to their church so I braced myself for¬†a service without¬†interpreters, which I knew. The pastor usually leaves his sermon notes copied off on the table in the foyer, but there were none left when we arrived. I just watched the praise team from the balcony¬†where we sat and read the words to the songs, occasionally hearing the beat of the next stanza so¬†I could try to sing along. The sermon started and I just followed the three main bullet points of the sermon about the particular Advent candle. I had my Bible so I read some passages and found amusement from the boy sitting in front of me trying to figure out where the exact middle of the Bible was–he ended up in the middle of the Psalms. No surprise, I told myself…seems¬†like¬†I had¬†done that myself when I was his age. We took communion and then the praise band did an acoustic version of “O Little Town of Bethlehem.” They sang all the verses–and even though I could hear all the words, I just sat there and listened for most of it. Just letting the words sink in. “O come to us, abide with us, our Lord Emmanuel.”

Last night was different though the same church, same pastor, same seats. Except this time my attitude was different. In the car, I kept thinking to myself–this is ridiculous! I could just stay at home and read my Bible and sing a few hymns to myself. I felt more like a hypocrite really–wearing my favorite skinny jeans, cute sparkly¬†top and sparkly shoes. Like dressing up for nothing…was what my thoughts were. The songs had no words on the power point; there were no bullet points to the message; and worst of all, I forgot my Bible so I couldn’t even read any passages. I just sat there. My right hearing aid¬†was not right and so I had to take it out; my shoes were bugging me (and my sister told me they were making noise as I was trying to take them off); and I just really wanted to leave. We did not even have candles to hold when they started the song and proceeded with the congregation lighting each others’ candles. The people in front of us turned and realized we had no candles. They offered theirs. Another woman did the same. When all the candles were lit, we sang Silent Night.

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In the candle glow, I realized that this is what Christmas should be like–sharing our candles with others so they too have light in their time of need. It brings¬†hope and love and peace. The Light of Christmas isn’t meant to burn out the 26th of December. The message lasts all year.

From my house to yours: Merry Christmas!

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Today’s Thousand Words.

“A picture is worth a thousand words.”

More to come…

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I’m back!!!! (take 2)

In other words:

After all my crying today…look who returns!!!¬†ūüėÄ ūüėÄ What a day it has been! Not a very good day to say the least. Thanks to my mom for driving me to work and keeping me talking, all to lose¬†it completely in cash office (and many other times during the day). As I sat there I thought of a song I knew growing up. It was a Psalty the Singing Songbook song. It is called, “Cares Chorus:”

I cast all my cares upon you

I lay all of my burdens

Down at your feet

And any time, I don’t know

What to do–I will cast all my cares upon you

I tried to remember that¬†during the day but¬†had a hard time focusing. It was the unknown; it was something I could not control and I was restless. I needed¬†peace.¬†St. Augustine wrote in his book, Confessions, “You have made us for yourself, O Lord, and our hearts are restless until they rest in you.”

God sure works in amazing ways. For me tonight…it was bringing Muffy home. I am so thankful!! Thank you for praying! ¬†More on Colorado in the next few days! ūüôā

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I’m back!

Hi all~

Colorado was amazing! It was spectacular, refreshing, full of family and friends and new memories! I am uploading my pictures now, then I have to get ready for work–so you will just have to sit tight for¬†a few hours for more stories and pictures! ūüôā

Can you please pray for Muffy. The neighbors only saw him once this week while they were feeding him. We have called and called for him…we searched for him last night (everywhere we could think of) and I just really am trying to keep hope that he will come back home. I know God knows where he is, but just would like to know for myself. Sounds selfish but I love that cat. He is so special to me. I am having a hard time thinking of anything else. I took this picture only a few days before we left. He loves being in the garden. His eyes make me laugh. ūüėé

Thanks for praying.

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