Category Archives: Family Times

June 28, 2013 · 11:59 pm

It’s like lab work…Part II

Yesterday morning, my mom, sister and I set out for Cincinnati. My first appointment at Children’s was at 10:30am, and although it turned out to be a very long appointment (which I am used to), it really helped in understanding more of the treatments and a few ” for future reference” ideas from my social worker in the case I start getting to a point where more help is needed in daily things.

Whereas last appointment I was emotionally calm, this time I seemed to be an emotional wreck. In discussing the chemo treatments and steroids with my doctor, I burst into tears as I tell him the thought of me not being able to be on steroids (which are moderately helping as much as they can with the pressure from the tumors) is just unthinkable for me. How will I function? Then I turn right around about an hour later and get upset when we start discussing the options for receiving help in the case I am no longer functional, such as areas like getting ready in the morning or in the event I need to stay home alone and need someone to be there just in case I need help. I blurted out defense, “I am fine on my own.” Yes, but for how long. I see now that these decisions also affect my family and although I rely on them and they will do anything to come to my aid…there may be a point in time when they just need to be family and I can get more professional assistance. And thinking that way bugs me. So I ignore that fact, when I may someday have to face it.

I felt yesterday was a more typical doctor appointment. It was like a teeter-totter. I had my concerns/fears on one end and I had my push to continue to try hard when things are slowing down on the other side. I don’t think there is a right and wrong to this equation…but I realized the continual need for keeping this in balance is important too and that balance comes best when I lay aside both my fears of the unknown and my defense wall and focus on what God sees. Some nights I get in bed and have relief when I say, “God is not finished yet…” and other nights I just get in bed and cry, telling him that I am not sure how this is going to work. I think I took both these emotions with me yesterday even though I am at a peace about starting the treatments. I think too that because my body has been changing, I have been fighting harder against it and putting a “state of emergency” on getting treatments started to see if they help. Again, I have no control of this, but getting that into my heart and mind is a difficult task. Something I am struggling with and have in the past.

In general, I can’t say that I can give you much details about the chemo, Sirolimus. To be honest, I think I found the statement, “Third time’s a charm,” to be false. This is the third time that I went over the chemo treatments and side effects with my doctor. It was a bit overwhelming. I understood everything but it is very detailed this time with specific instructions that I am nervous. My RN assured me in an email this morning that the process will make better sense once we get started. And it will not be like Avastin where I go and have one day treatments then recuperate for a few days, get back to normal living and then restart the process in two weeks. This chemo treatment will be taken at home (which I also learned that it is a solution, not a pill) and I will be taking it more frequent than once every two weeks (like Avastin).

As we discussed side effects again, my doctor made it very clear that very few have started the chemo while being on steroids treatment at the same time. However, because I don’t have an option to stop steroids at this point in time (I guess I do but highly unwise), the team of doctors are going to be monitoring my blood levels from labs and anything that I email of things noticed, because this chemo affects your immune system and they do not want me to get infections of any kind, especially in the lungs (could lead to pneumonia). Most of chemo will be regulated by labs and blood levels..it will be a slow process, but still the hopes I do well on it and possible halt of tumor growth.

A few of the other side effects I will be given more instructions on what to watch (such as sores in the mouth, fevers, headaches)…and I was given specific instructions that I was not allowed to drink grapefruit juice. Still not sure why, but it does not harm me any as I don’t like grapefruit. 🙂 The plan for now is to get labs done on Monday, and as long as everything with labs check for an ok to go/insurance for the medicine then I am set to start this Tuesday, July 2nd.

…

The second part of doctor appointments was getting my much-anticipated Phonak Cros! I was a little concerned about the (probable) loss of hearing that I don’t think I was as excited about it as I was a few weeks ago. I told my audiologist first thing about my hearing loss observation. We did a quick hearing test on the right side and it did show that I lost some frequency in the low tones. Surprising but then again not so much, because the tinnitus has changed from when I wrote about my mind feeling “unorchestrated” to now a lower consistent tone. I said, “It sounds like a man gargling.” Sometimes things are hard to explain, ;).

We adjusted my hearing aid on the right side to give me more volume. I decided to go ahead and give the Cros the full trial run (keeping it under warranty of 30 days). This means I have time to try it out in different settings and see if it helps. If I think it is not-or in the event I notice more hearing loss in the next few weeks-then I have the option to return it for full refund. I am really wanting this to work, but at the same time, the hearing loss is something I will never regain…so I feel I must be wise in the final decision and give this a good trial run.

It is a strange piece! It is very tiny and there is no ear mold…just this little 3-D triangle microphone that goes in the ear and this little plastic tube that is attached the actual body of the Cros that rests on my ear. I am so used to having ear molds that I panicked when Marcia asked how it was working. I was feeling inside my ear and since I felt no ear mold I thought I had lost it. It will take some getting used to–especially putting it in!!

I can’t honestly say that I think I notice it helping yet as it has only been one day. Last night I didn’t notice changes, but I do want to keep my thoughts open about it and not “assume” the worst that it won’t work. Tomorrow I have a lunch with a friend at Chic Fil A. No time like the present to test it.

And that is the current news…the end of my lab report. 🙂

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June 28, 2013 · 6:07 pm

It’s like lab work…Part I

If you have ever had important medicines where labs are required before you can proceed with anything medical then this post would be like the lab work. Maybe I spent too many hours in doctor appointments yesterday or maybe it is because I have somewhat neglected to keep you all informed of current physical conditions, but to understand yesterday and the current future course of actions then you need to understand the lab work of what has brought me to this point.

So here it is: Part I

I wrote at the beginning of the month about my May MRI/hearing test results, a list of things physically changing in my body and the fact that I had an option for a chemo treatment. Over the course of the month, here is an inside scoop of a few important decisions and observations that lead up to yesterday’s appointments.

First, it was no easy decision about the chemo treatments. Yes, I had an absolute peace that doctor’s appointment, but when I returned home, I was forced to face reality and the fear of the reality that my body is indeed winding down faster than my hopes, I lost sight of the peace that God was in complete control. I felt like this heavy cloud was over me..like the fear that I would make a wrong decision. I was just confused even though I was seeking God with my whole heart.

Do what the Lord bids you, where he bids you, as he bids you, as long as he bids you, and do it at once. —C.H. Spurgeon

Between different songs coming to mind (Michael W. Smith’s “Someday” (Set the Children Free), passages of Scripture (Psalm 90, emphasis verse 12), talking with my parents and the C.H. Spurgeon’s quote, I came to the decision that I would start the chemo treatments. Not implying that God has given me this time to “be sick,” but that I have the time right now to try. I knew deep inside that if I got to the next MRI without at least trying, then I would hold guilt on myself (even though I shouldn’t). I also had to come to realize that this is still something that is purely trial run. The hope is that it stops tumor growth, but it could not work any at all too. Neither myself or my doctors have any control of that.

My decision made, I emailed my doctors and we started communicating about different things. I also told them that I would not want to start anything until after my parents returned from their trip to Colorado. That leads us to this week.

Like any other appointment, I have to evaluate myself and make a list of any new physical changes noticed or questions I may have. Even though I was just at Children’s three weeks ago, I had a list of new physical changes which is a bit saddening, because it means that the something is still going on inside my brain area. Because I won’t have an MRI for another 2 months, I can’t assume tumors are growing but they are obviously putting pressure or something as my body is showing change, especially on the right side.

Changes I have noticed have been complete numbness in my right hand and up my arm. (I will blog more on my right arm later). There has also been an increase of pressure in my neck, so I feel my posture has decreased again even with keeping up with my PT exercises. I also have had an increase of pressure in the lower spine. I can feel it as well as I notice it in the way that I stand and the added pressure on my intestines. My balance seems about the same in normal walking situations but may have a bit more troubles as the most frustrating recent change being losing hearing in my right ear. Usually a few small decibel is not that noticeable, but I just got my hearing aid adjusted two weeks ago and already noticed that I was having a hard time hearing. And even if I did not notice, others had because the first thing a few friends and my doctor pointed out was my voice being strained (I do this when I can’t “hear” myself speak.)

As all this came together, I took my list and my questions to my doctor appointment yesterday. My lab work on my behalf was complete, but I was in for more when I got there…

Continues in Part II.

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June 24, 2013 · 6:55 pm

Team: We Walk with Mel!

Dear Family and Friends,

Galatians 6:2 says, “Bear one another’s burdens…” and yesterday was another example of how you reflect this verse in my life as I walk with NF2. DSCN2250

I was never expecting to raise a lot of money, but through your generosity, I was able to help contribute over $800 to the NF Walk cause: research. As a whole, the Cincinnati NF Walk raised a few hundred d0llars over their goal of $25,000!!!

Maybe I have not talked about it as much as I should (because to be honest, I had been putting myself in denial of reality), but it is no secret that I am running out of options for treatments. Even the steroid treatments I am currently on will not last forever…only God knows the timing of it all. So yesterday when my sister asked why I was walking, I told her I was walking to help raise money for research and then after a pause I said, “And just because I can.”

I can walk! And I think I should get into a praise habit and thank God every morning when I get out of bed, because it is only through God’s strength that I still can. Yesterday was not an easy walk. In fact, it was much more physically enduring than the Women’s Center Walk last month or even my fall off the treadmill a few days ago, but the truth of the day: I was there, because I can walk!

But even though I can still walk, I would have never made it through the 2-mile trek alone. I consider you all on my “team,” but I know everyone who wanted to be there could not all be there and thank you for your prayers from afar. I did have a team with me though: (L to R) my younger sister, my aunt and uncle from NC, and my oldest sister and brother-in-law. Together they helped make my day both a fun one and a successful one.

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As we got started, we were first welcomed by Storm Troopers and bounty hunter from Star Wars. Being a fan, I thought it was hilarious they were there acting like crowd control and took a picture with them.

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As you can see, there was quite a good turnout of walkers. Sadly though, we did not get to talk to hardly anyone else there, because by the time I changed my tee shirt and we did our picture with the signs, the walk was about to begin. We were able to talk to one family that had NF1, only for a few minutes. They were very nice. DSCN2249

Before the walk officially began, they wanted a big group picture–which should be uploaded on the CTF website within a few weeks. So, up this huge hill we went and as long as you could see the lady with the camera she could see you. Then the walk started (thank you David and Uncle Jim for helping me get off the hill!) 1058790_813723071694_1175541122_n DSCN2253 DSCN2254

We stopped often so I could take a drink and catch my breath. It was a lovely day but a toasty one!! By the time we got half way, I felt so tired (due to heat, not enough water intake and not a great breakfast to jumpstart my day)…that and my left foot was achy! Combination of bad balance and the path tilting slightly to the right, my left foot was feeling the weight!

The NF Walk took place at the Sharon Woods Lakeside Lodge which had at the half way point an area with bathrooms and picnic tables in a shaded area. This is probably why I came in last, because we stopped there and I was able to eat an apple, which greatly boosted my energy to finish no matter how bad my left foot felt. DSCN2258 DSCN2256

There did come a certain point when I started to get really wobbly even with my walking sticks, just from being fatigue. I also find that I could not get much conversation in as turning my head to the side while walking makes me wobble too. So, my aunt suggested I forgo the rod and staff and use their arms! It helped me forget about my feet and I got to get some chatting time in too (between catching my breath!) 1060338_813741854054_844995300_n

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And I finished, even if a bit unstable on my feet! 🙂

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Instead of joining the picnic, my aunt and uncle treated us to a delicious lunch at a local deli. 🙂 They left afterwards to head home and the rest of us made our way back northward, stopping in Lebanon for ice cream at a place called Double Dip. If you are ever in the area, it is worth your dessert appetite.

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…

I just wanted to say thank you again…from the bottom of my heart for the love, support and prayers that you have shown me over the past ten years and this week in raising funds on my behalf for NF research.

God has richly blessed me with the abundance of family and friends and I can truly say, “I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (Philippians 1:3-5)

~ Mel

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June 21, 2013 · 12:44 am

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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June 16, 2013 · 8:25 pm

Car Lessons 101

Most of What I learned about cars, I learned from my Dad. He taught me how to change a flat tire and explained the importance of having your tires rotated and how to check my oil. He taught me how to drive in the mountains, merge into traffic on a freeway, fill my gas tank at the pump and explained insurance details tucked away in the glove compartment. On the day I bought my own car, Dad was with me (as well as Mom) to make sure the fair prices were being put on the table before I signed the paperwork. On the way back to my apartment, he even bought me new needed windshield wipers and showed me how to replace them. 🙂

Both Dad and I like cars: he likes to work on them and take pictures at old car shows. I just like to drive my car or ride along in any other…given (1) I am in the passenger seat and can make conversation or (2) I am in the backseat and can read. Road trips have special memories, especially the trips we took when I was a kid. Because I did not get car sick, me and my oldest sister were sentenced to the very back seats of the suburban which entitled us to no leg room and getting snacks whenever someone up front was hungry. We had no windows that opened, so our view was always tinted and when the windows from up front were open, we got all the air (which got annoying and cold quite fast!) The speakers for the music were all the way by the back door, so I was constantly asking for the music to be turned up…then Dad would jam to his oldies (which I did not have an appreciation f0r at the time) and I would reverse my request for the music to be turned down. Eventually, Mom would just turn off the music and say we should just talk with no music.

So today Dad, I thought of you when I found this picture:

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I don’t know if it was our first family trip to the Garden of the Gods in Colorado Springs, but I do know that this was the first picture I ever took and you just happen to be the one posing (actually I remember asking to take your picture). Today I won’t ask you to turn down the music, but might just find myself singing along. Happy Father’s Day!

I was lost and blind then a friend of mine
Came and took me by the hand.
And he led me to his kingdom
That was in another land.
Now my life is changed, it’s rearranged
When I think of my past I feel so strange.
Wowie, zowie, well He saved my soul.
He’s the rock that doesn’t roll.
—
He’s the rock that doesn’t roll.
He’s the rock that doesn’t roll.
He’s good for the body and great for the soul.
He’s the rock that doesn’t roll.
—
I was all alone like a rolling stone,
I was going nowhere fast.
I was on the road so far from home
When the future touched my past.
Now I feel so blessed ’cause He gave me a rest
And I finally feel like I’ve passed the test.
I wanna be like Him, yes that’s my goal
Like a rock that doesn’t roll
Larry Norman. “The Rock that Doesn’t Roll.” In Another Land. Solid Rock Records: 1975, 1993.

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June 11, 2013 · 11:57 pm

Being a Kid…

When we sisters were little, we liked to pretend–anything from making “houses” out of oversized cardboard boxes to playing in make-shift tents out of blankets between our beds or chairs from the kitchen. We also loved to play “spy” in which we would draw maps of our house and set out a course to spy on people in various rooms…which usually was just my Mom in the kitchen who would pretend not to see us. Yes, countless hours of sister fun (and the bickering that seems inevitable in the equation.)

One thing we did occasionally was pretend to sign when entering the grocery store. We would decide before-hand as we exited the car who would be “deaf.” Coming from a small farm town in which everyone knows everyone, this probably seemed like comedy to the onlookers at the store, because everyone knew we were a hearing family..but being a kid that thought never crossed my mind.

My experience with knowing about sign language came at an early age. In the second grade, there was a girl who was Deaf in the classroom next to ours. We often joined classes together for games, crafts, or different lessons so I first saw an interpreter at that time. Not knowing any signs, I would at least try to communicate to the girl at recess by making up motions and pointing to the merry-go-round to see if she wanted to play. If yes, then a smile and the sign for “yes” or a nod of the head and if no, then she would sign to me then just point where she wanted to play. She left after that year to attend the School for the Blind and Deaf. But it was the beginning of sign language for me.

I leaned how to sign “The Pledge of Allegiance” in elementary school, but signing otherwise did not take great interest in me until my oldest sister came back from her junior high church camp and taught me how to sign “Shout to the Lord.” The first summer church camp I attended as a “going into the 7th grade” camper had different afternoon sessions you could choose for activities. I am not entirely sure (ok, NOT SURE AT ALL) where I thought the idea of playing dodge ball would be a great opportunity for fun…because as it turned out, I was the only girl (go figure). I could have done the sign language session–what a poor decision on my part–however, I did have a tiny bit of fun at dodgeball. I just made it a point to get hit, then did nothing until the next game started. Great strategy! And this did not stop me from learning the sign language song either–since all my friends had taken that session and practiced the entire way home, I picked up on it really fast. That was the year I learned Mercy Me’s hit, “I Can Only Imagine.”

It was my freshman year of high school that I desired to learn more sign language. Switching church camps meant there was no longer any formal instruction for learning songs, so I set out to do it on my own. One of the leaders for our youth group was majoring in ASL, so she helped me get a used textbook from the college bookstore. Best $20 ever spent. The dictionary is massive…I still own it. I did acquire another book later in high school and refer to that book most often. (And just for the record–library book sales can be a source of hidden treasures. Yep, believe it–but I just attained my final sign language dictionary for 50 cents!!!)

My signing story is most likely familiar from this point on in life–high school enabled me to be part of leading worship at church whether in the praise band playing bass guitar or signing songs. I took a community ASL class with my Dad and in college I took an ASL 1 course the summer before I started using interpreters full-time at school.

One part of my past history with signing that always brought me great joy was leading the “Sing and Play” at Vacation Bible School. This beginning part of the kids time at VBS was where we sang songs, introduce the Bible buddy/point of the day and perform a little skit. (My sister and I did an epic skit of a horse stampede in which she ran on stage to save me, using that “save a person action” like the movies or commercials…where you run in at full speed and push the person over to safety at the same time you are holding them. We had the kids on the edge of their seats. 🙂 Favorite VBS memory!)

I knew it would be my last year leading this part of VBS, because (1) the next summer I had plans that I would move to Denver with roommates to work and finish school and (2) I could no longer follow words with songs. I have not helped with a VBS since then until this year, although I did volunteer with a kids ministry in Downtown Denver until the move to OH. In early May, when my church announced this year’s VBS dates, I signed up to help serve in the kitchen. I figured this was easiest to help. I knew I would not be a crew leader, due to the fact I can’t hear and my physical body is not in the best condition. In the few days before, plans changed and I was all set to help in the pre-school as a helper for a crew leader. I was told I would just be an extra set of eyes. Seemed reasonable and something I could do.

My group learned a few valuable lessons the first day which has made the past two days since then flow more smoothly:

Mel does not sit on the floor as she can’t stand up without assistance or somewhat falling over; I now am entitled to a chair. 🙂

Mel is not good at holding onto her snacks–if they fall on the cement then it is not edible (today it was my whole bowl of trail mix).

Mel’s crew leader used to be an interpreter and signs everything…which meant the first day, all the five groups in our specific pre-school animal category were exposed to sign language/interpreter action. For my own group, lots of questions were asked…being a kid, they are curious, but the moment they know the answer to “Why?”, life goes on. Sweet days of innocence.

As for me, I got home and wondered what I was thinking when I said yes to helping in pre-school!?! I felt out-of-place, as well as a huge distraction, because I needed extra help and attention. I finally came to the conclusion that I am not a distraction but an opportunity for these kids to see that we are all made different and that we can help each other. VBS week is nearing an end and I know this is the last of my days working with children, but I cherish them because the eyes of a five-year old don’t see a helper with physical problems–they see Mel. And it leaves me with a longing to be like a kid again…

Matthew 19:14, “Let the little children come to Me; do not get in their way. For the kingdom of heaven belongs to children like these.”

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June 4, 2013 · 5:36 pm

I Breathe

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“Today” by Iona

– – –

Today the grass is greener

than I have ever seen

Today the sky is bluer

than it has ever been

And Today my heart is breathing

like I’ve never felt it beat

And Today flowers are growing

from the ground beneath my feet

– – –

Today my hope is stronger

and the visions clearer

To walk in Love eternal

the path that takes me nearer

And to You the music’s playing

like it has never done

And to You my feet are dancing

underneath the sun

– – –

In You I Live

In You I Live

In You I Live

and breathe

This song is exactly opposite of what I actually felt this morning. The day is indeed beautiful with the sky bluer, the grass greener and flowers growing around the back patio. And inside myself I felt distant from this beauty of the day. I did not feel like dancing, making music in praise. I felt heavy…burdened. Sorrow instead of joy in the morning.

Last night, I laid it all out. In my conversation with my dad, we discussed everything that I could think of at the moment…this decision about the chemo treatments is not just the treatments. I realized it goes so much deeper than that…job, living, safety factors as my body physically fades, side effects of medicines, what happens after I can no longer be on certain medicines, independence and dependence decisions, current pains, current emotions, hopes that seem lost…

In a day, I don’t think these things in this much depth. But because I fell asleep last night still questioning…today, the heaviness lingered. I started making my morning coffee and asked God, “What happened to my joy?” I remembered a verse where it talks about our sorrow turning to joy–so I set out to find it. I should have known it was in the book of Jeremiah. In chapter 29, God assures the Israelites that He has a plan for their future, one that prospers and brings hope (29:11).

This morning I felt too that I was in bondage…exile from former things, out of my comfort and asking God, “Where are You? Why am I here in this place suffering like this? And what is going to happen in my future?” Seems last night that is all that happened–I just asked a lot of questions. My earthly father put his arm around my shoulder as I wept. He could only answer my questions honestly saying, “I don’t know.” But my Heavenly Father says, “This may not make sense at the moment. I know your pain, sorrow, confusion. Seek me and trust me. I love you and have the perfect plan for you. Your sorrow will soon turn to joy.”

Then I found my verse that I was seeking–Jeremiah 31:12-14 (The Voice):

“The redeemed will return home and shout for joy from the top of Mount Zion; they will shine with the sheer goodness of the Eternal— The harvests of grain, wine, and oil; the healthy flocks and herds. Their lives will be like a lush, well-watered garden. From that day on, they will never know sorrow. Young women will dance for joy; young men will join them, old ones too. For I will turn their mourning into joy. I will comfort My people and replace their sorrow with gladness. From the overflow of sacrifices, I will satisfy My priests; All My people will feast on My goodness.”

My own visions are unclear, but seeing through eyes of faith gives freedom from this sorrow–maybe not physically, but in my soul. I learn to live. And I breathe.

We have the idea that God is going to do some exceptional thing— that He is preparing and equipping us for some extraordinary work in the future. But as we grow in His grace we find that God is glorifying Himself here and now, at this very moment. If we have God’s assurance behind us, the most amazing strength becomes ours, and we learn to sing, glorifying Him even in the ordinary days and ways of life.

~Oswald Chambers, My Utmost for His Highest, June 4.

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May 23, 2013 · 11:55 pm

Half the Results

It is that time again…after three months of no doctor appointments (give or take a few random ones), today was my annual MRI and hearing test day. I only have half the results as I will find out the results of my MRI next week when I see my team of doctors at Children’s in Cincinnati.

My results are from my hearing test. I had actually prepared myself (maybe prepared is too strong of a word)–hmmm. maybe I should say, “wrestled with my emotions” on this subject weeks ago. It first started when I was on the spring break vacation with my family. I felt isolation. There were the large family dinners with company. In those moments, I felt anger and frustration. There were the nights I laid in bed and talked to God and just asked Him how I was going to live with all this new change. I felt sadness. There were the moments my family signed to me and I understood; practicing a language brought laughter.

I didn’t really have any emotions today going into my hearing test. Well, ok, maybe one slight assertive emotion: I go in and sit in the chair and we start discussing how my hearing has been and changes I have noticed. In the conversation I bring up my well-reasoned and thought out explanation of why I choose not to do the test where they read the word but cover their mouth. I say, “I just make up words.” Not on purpose, but I have no idea what the word is. I just think: that sounded like it started with a “C” and then say a word that it could be. Think of words! My probability of guessing the right word is off the charts! Which is why I always get zero correct when lips are covered. Then we test where I can read lips. A much more enjoyable experience! Sadly though, my assertiveness does not compare to set procedures, so I had to take all the word tests. I am sure the audiologist does not hear cases like mine often, since I am so old compared to the other patients there, so I am thankful she took time to hear my argument. 🙂
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My right ear has stayed the same since February which is good news! The tinnitus today was not that bad, so I am glad for that too as some days it is SO loud, I feel that affects my hearing. I have an appointment next Friday with the Hearing, Speech and Deafness Center to get my hearing aid on the right side adjusted to a higher volume of hearing compatibility, because I don’t hear anything out of my left. The audiologist said, “It is not deaf yet,” because I could hear the beeps at two different levels (which I was not expecting). I was shocked! When I asked, she said it was at the highest level…so if you had regular hearing, I wonder how loud it would be! Basically, in order to “hear” something out of my left ear, it would have to be a volume of epic proportion–and at that point I still have my right ear so how would I be able to distinguish left from right?
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I have been going without my left aid most often as it is a waste of battery. I usually just wear it in order to change the settings for the right as my right hand is so numb that changing the settings with it gets frustrating. At the present moment this is what I will continue to do. We did discuss very briefly the fact that cochlear implants is still an option if I choose. I previously had discussed with several doctors and did my own thinking and praying, listing of pros and cons on the subject. Right now, I still don’t have a peace about it, but I also feel that it is time to relook at my list, research and pray again about the subject just to refresh my knowledge. It is one of those situations I often wish that there was an easy answer for–but if the answer was easy, where would my faith be?

Therefore the Lord waits to be gracious to you, and therefore he exalts himself to show mercy to you. For the Lord is a God of justice; blessed are all those who wait for him. For a people shall dwell in Zion, in Jerusalem; you shall weep no more. He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you. And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying, “This is the way, walk in it,” when you turn to the right or when you turn to the left. ~Isaiah 30:18-21 ESV

That is all I have today…more to come.

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May 14, 2013 · 7:45 pm

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! 😀 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 🙂 ), 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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May 12, 2013 · 12:17 am

Let’s Face the Facts

It may not be typical of most first graders, but I found out early on what subjects in school I preferred over others. Story time was the highlight of my day; I never understood the “gate” method in tallying five points; phonics became boring; and science was rough, because once in an experiment in which we were blindfolded, our partner had to give us something to taste. We were to tell by taste (not sight) what the food was and which area of the taste buds it affected. My friend Kym gave me a nice spoonful of dry coffee. I guess it was paybacks for giving her lemon juice when she told me that is not what she wanted to taste. (We could preview our options before being blindfolded.)

Yep, first grade was a year of exploration and I learned that writing was my favorite. In my mind, I excelled at it: perfect spelling, thought sequence and transition sentences and narrative form. I took great pride in all my writing projects. This particular example was no exception.

Our class was having a Mother’s Day party where all Moms and Grandmas were invited to attend. Our teacher gave us this special assignment: We were to write a letter to our Mom and then share it in front of the class. I remember Mom sitting in the crowd smiling at me. With trembling hands, I began to read my letter–

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I think I could have excelled at poetry if I had given some effort into the subject. And while I remember hearing a few chuckles in the crowd (innocent ones I am sure), Mom was smiling and gave me a big hug and kiss when I sat down.

Mom, I can’t honestly say that I know how you managed to keep a smile and not laugh, but I think we can just face the facts: You’re pretty “supper!”

Happy Mother’s Day!

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