Category Archives: Adjusting to NF2

“Writing Letters on the Veranda”

I like to write. Anything from handwritten cards, typing emails, thoughts in a journal or “to do” lists, taking notes during church or blog entries–writing is something I enjoy. I was the odd student that celebrated when term finals was a twenty page research paper or when essays on tests were a major percentage of the grade. When writing I get to think. It is a conversation on paper.

I think writing flows in my blood. My mom is a role model for what I love in writing. I watch her journal at the kitchen table and admire how she is not just writing but adding color and imagery to the text. Every month she writes cards for all the occasions–birthdays, weddings, anniversaries, get well, sympathy, thank you, thinking of you–to all members of the family, extended family, or close friends. And Mom has the prettiest handwriting.

Yesterday was my writing day. I had momentum. First agenda: I finished all my drafts in my email inbox, much to my hand’s delight. I should have paced myself, because by the time I reached Stoney Creek Roasters for an afternoon tea to accompany finishing some snail mail, my right hand was about ready to call it a day.

But it was worth it. It may not have been a “veranda”, but I was able to sit by the window and look out at the luscious greenery by the creek and write.

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My right hand has become very numb. There are things that are getting more difficult to do and holding a pen firm to write is one of them (sometimes just holding a pen in general depending on size). Last fall, we purchased this tool to help me hold a pen and write. At the time I did not essentially need it so I kept it in the cup of other pens on my nightstand. About a month ago, I reorganized my room including the nightstand corner. I was switching the cup to an old souvenir mug and remember taking this pen holder out because it was too big. Last I remember is setting it on my bed with a few books before I put it somewhere I reasoned to be a good spot for later use. And I don’t recall where that spot is. Thus, at the time I need it most, it is lost.

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Probably a combination of my perfectionism with the sloppy handwriting, my “to do” lists or sometimes letters are sent to the trash can as I start over trying to write with more legibility. Last night, my hands were tired but on my way to bed I knew if I did not write down that I needed more orange juice for taking chemo doses that I would forget. I still forgot what it was when I looked at my sticky note this morning. I stood there like I was reading a riddle…”small..”‘–ok, what did I need that was small? It took me a few minutes but then I remembered what it was that was so scribbled. Small OJ. I threw the sticky note in the trash and wrote a different one.

Life can be like a scribbled sticky note of agendas. In trying to write out my story so perfectly of agendas, I see myself crumple the paper and restart the whole process over again…each time attempting to grasp the pen I write with just a little tighter. But my hands grow weak and I have to let go of the pen. It is only when I have complete surrender that God can post His notes to my heart reminding me (again) that my life is worth more than my own scribbled, crumpled sticky notes. It is a novel being tenderly written just for me.

The heart of man plans his way, but the Lord establishes his steps.

Proverbs 16:9

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Confidence

This morning was one of those mornings. Not that I got started off with the wrong foot, but definitely the wrong shoes! I should start paying closer attention to my gut feeling that says, “This is not going to work.” Now I like to be optimistic, but that little voice inside tried to warn me that the dress I was trying on in the Target fitting room was too small. “It’s so cute, I want to try it anyway.” I get stuck. Thankfully my Mom was shopping with me that day. Lesson learned (at least for shopping).

You would think from my Cinderella shoe experience that I would have learned to follow signs that it might not be a good day to wear certain shoes. Think again. The cause: they completed my Sunday morning outfit (even to the choice of earrings). The effect: I was tripping in them even before I left the house. “If I walk slow I will do fine.” Even slow was not working. I get to the church door and the man who greeted me acted calm but I wonder what he was actually thinking. I said, “Good morning!” Then tripped and said, “Stupid shoes.” I never fell, but on the way out of church I was having such a hard time, I just slipped off my shoes and went barefoot to the car. The shoes are now in the thrift store pile. As cute as they are, they just have to go.

This morning, the message was on Psalm 16; “A Psalm of Confidence.” On the drive home, I was thinking of how the message was exactly what I needed to hear in encouragement and truth that “Confidence in the Lord means that I trust Him regardless.” It was like preparation for the days to come.

As I am still thinking, before you know it, one of my favorite movies comes to mind: Rogers & Hammerstein’s The Sound of Music. It could have been my shoe experience or emphasis on the word, “confidence,” but I started to laugh as I could picture Maria (played by Julie Andrews) singing and doing her fancy feet work in the song, “I Have Confidence.”

http://www.rnh.com/videos.html?video=109&gallery=170&vpg=7

[Fancy feet – 2:30; my feet – 3:46] 🙂

I definitely don’t trust my feeble ankles or my shoes to preserve me when I walk, but I have confidence in the One who is able: “I have set the Lord always before me; because He is at my right hand, I shall not be shaken.” Psalm 16:8

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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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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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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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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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Nature’s Night Lights

Random fact #0613: Mel sleeps with a nightlight. Two actually. One in my main room off on the side left wall and another in the bathroom which I can see from my bed. I am not afraid of the dark–I just don’t like the dark due to bad balance. My night lights serve as a safety purpose, without them, I fall.

I will leave you to imagine how I look when I walk in the dark. Darkness is the reason why I do not especially care for winter months. In the summer, I can still be outside around 9pm and be fine. When it finally gets dark, it is best that I have assistance…usually an arm from a person walking beside me or if I go out on the back patio to feed Muffy his bed-time snack, I initially hold on to the rail by the door to balance then take it slow to a chair (plus the patio lights are on and I stay in the lighted area).

I find it is easiest to wait for Muffy to finish eating by just sitting. Thus, I sat last night with no thoughts–just staring into the darkness ahead of me. Then it happened…Fireflies!!! I have been waiting for this moment since the start of Spring! In my mind, it is now the official start of Summer!!

I remember fireflies when we lived in Toledo until I was six. After the move to Colorado, our days of seeing fireflies were limited to when we took family vacations back out east to visit family and friends. Once when visiting friends near Chicago, we were taking a walk and fireflies came out. All of a sudden, gleeful cries and the pursuit of catching them took place…never mind the fact that we were teenagers. I still find it fun to catch fireflies and last night in my excitement, I banged on the window and yelled, “I just saw a firefly!!” I even held up my arms like a victory field goal, which probably looked and sounded more like George Bailey wishing Mr. Potter a “Merry Christmas” in It’s a Wonderful Life.

Although Colorado does not have fireflies, I don’t think that it ever bugged me. (Bugged: haha, Mel humor!!) I know this because God provided a different form of fireflies: nature’s fireflies. Best part was that I did not have to wait for certain seasons to see them. From our backyard, in complete darkness, the vastness of the evening sky and the twinkling of unfathomable numbers of stars was far greater than trying to catch fireflies.

A few months ago at dinner, I told my mom that I was having a hard time reading Holley Gerth’s blog posts, because all this talk about having God-sized dreams left me feeling like I was sitting in a closet with the lights turned off. “I don’t have any God-sized dreams,” I said. Truth…I still don’t–at least I do not recognize them at the time. Not only my Mom, but countless others have kindly reminded me that I don’t have to do big things to be used by God. Even the tiniest star in the sky is still visible, just because it shines–and it shines even brighter when surrounded by others doing the same.

“Shine like stars across the land.” Philippians 2:15b (The Voice)

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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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Filed under Adjusting to NF2, Family Times, Funny Stories, Random, Uncategorized

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.” 🙂

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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Filed under Adjusting to NF2, Muffy

I Breathe

DSCN2206

“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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