Tag Archives: being with family

Today, May is here

Today I got to paint.

Today my sister, Megan, and Mom joined me. ūüôā

Today, my “painting studio corner” in an unfinished section of the basement, became artistic.

If you hear a voice within you say ‘you cannot paint,’
then by all means paint,
and that voice will be silenced.
– Vincent Van Gogh






More to come…



Filed under Family Times, Paintings, Uncategorized

Mrs. Dash

In the classic Christmas song, “Rudolf, The Red-Nosed Reindeer,” the first of Santa’s reindeer mentioned¬†is Dasher. You must be thinking, “Mel, we are past the holidays! It is a new year already!” That is exactly my point…the new year took off with a¬†dash! ūüôā We kicked off the year by picking up my sister and brother-in-law from the airport…and with all family members and spouses present, we enjoyed a nice meal at the Spaghetti Warehouse in Dayton, then came home to celebrate Christmas.

Yep, January 1, 2014 was a fantastic day and the beginning of¬†a week filled with fun! We played games, shared memories and had good laughs, took loads of pictures,¬†drank almost all the hot chocolate in the cupboard, played more games,¬†“owl family”¬†late nights resulting in late mornings and breakfast times, and took a¬†short¬†road¬†trip to the Creation Museum in Petersburg, KY. ūüôā

At the Creation Museum, there was a small room on the lower level called, “Dr. Crawley’s Insectorium.” Now, if you know me, I am not a bug, insect or spider sort of person. Snakes I can handle if they slither slowly, but insects…yuck! However, because we were there, I wanted to get the whole museum experience. Besides, these insects were dead, so what was the harm in viewing them? The first of the display boxes contained locust, crickets and katydids. The plaque described how they¬†form “God’s¬†choir,” as they make beautiful chirping noises¬†when using their mating calls to attract females.

I thought a few things were interesting: a)¬†A female of¬†the¬†three insect¬†species listed¬†has to listen and distinguish among the chirps which mating call is for her and then respond; b)¬†Out of all bugs and insects, only these three are listed for their beautiful noise; and c) The plaque also mentioned reference to prophets in the Bible,¬†one being John the Baptist, and their eating locust. I didn’t think much about the eating part until the end of the museum tour and day, in which¬†Mom, my brother-in-law and myself, found ourselves finished a half hour before everyone else. With nothing else to see,¬†we went to the bookstore to look around and wait.

My choice of two post cards placed me over at the cash¬†register and after I paid, I see¬†at the side the selection of chocolates (not having anything to do with the museum…just a treat!)¬†and other candies. Of course, the suckers with bugs in them would not¬†my choice of a tasty treat. Under the candies was a shelf that had little boxes of flavored locust, but I didn’t actually realize they were real locust until I picked up the sea salt flavor and read the cover.¬†Tempted, I almost purchased the sour cream & onion flavor, but right when I decided “no” in my mind, the store closed and we left. So much for starting the year off in a bold fashion. ūüėČ It may have had too much salt anyway…

Right before the new year, Dad and I discussed my left ankle. It has been swollen for quite sometime. When I sit, I don’t always prop up my feet, which doesn’t help any, but the fact is that I needed to try something new. I already deal with osteoporosis and numbness (which I have no control over), but the¬†swelling¬†I¬†could try to¬†bring down. The¬†simple¬†word: salt. Oh how I just love salt!¬†So¬†being told, “No salt,” was a sad experience at first, because I literally thought I could not have any. I was reassured that I can still have salt. If you think about it, salt is unavoidable-it is¬†in everything!¬†It is not a diet or new year’s resolution, but my new restriction was¬†simply that I just can’t add salt to my plate and must practice self-control.

The tumor on my 5th nerve affected my sense of smell, which affects your taste. It has to be a very strong flavor or scent¬†in order for me to smell and/or taste it. Every so often, I will get a giant¬†“smell-wave” for a split second and it literally will take me by surprise.¬†If anyone is around, they hear about it! With tasting food it is different. The typical routine is¬†usually¬†putting on a lot of salt and pepper just for a taste. Without salt, foods like vegetables can be pretty bland. That is where Mom suggested¬†the substitute,¬†Mrs.¬†Dash. It is¬†salt free and has¬†a bold flavor!

Limiting my salt seems to be rewarding, as I have noticed the swelling¬†decreasing. The whole experience has also got me to¬†thinking of my own life. I have been out of¬†my typical morning routine, coffee and readings, which I see is starting to result in becoming a spiritual life that is bland. I still have salt–but like my food restriction, I am not adding any to my life–not seeking the boldness that God intends…and I feel no purpose. It is the new year, and I seem lost.¬†Praise God–He is bigger than my fears, bigger than my failures, bigger than my future here on earth.

He¬†is like¬†Salt–Unavoidable;¬†In Him, I have no need for restrictions.


Filed under Adjusting to NF2, Family Times


Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

Ephesians 3:20-21

Yesterday didn’t quite seem like the first day of Winter. Of course I was not going to complain…warmer temperatures, a little humidity and rain was a bit refreshing for me personally, as I could actually walk on my own in the outdoors. I probably am quite alone in this excitement, but I am also truthfully a¬†little sad that for Christmas we may be seeing green grass instead of a blanket of white. Guess it just goes to show that, “The grass is always greener on the other side.” I find the weather pattern here to not follow a pattern, so you never know what we will expect this week for the holiday anyway.

Yesterday’s¬†less-winter-like weather¬†didn’t stop us from enjoying the Nutcracker ballet performance in Dayton. Even though I could not hear the music, I was surprised at how much of the music I remembered and also how good¬†the timing of music¬†in my head was to the dancers onstage! (Ok, just had to have the boasting moment. ūüôā ) It was a memorable performance.

It really didn’t start at the Nutcracker, but the past few days my balance has been the worst yet. I think a main reason for yesterday was due to only being able to get a few hours of sleep the night before, so my body was exhausted. I have also struggled again with my bowels, so that may also play a part…the tumor pressure in the lower spine…the increase numbness in my left foot, resulting in a pained ankle and swelling. There are many things. By the time I am getting ready for bed last night,¬†I have already forgotten about the fun of the day–the time I got to spend with my family, the magical¬†performance¬†of dancers, the chance to¬†be out enjoying life.

I used to be a morning person…before my body got old. Before my body slowed, making any hurried situation a nightmare. I despise being rushed or racing time. I never win. This morning getting ready for church was like this. I could have been on time…if getting down into the garage didn’t mean coming right back up to use the bathroom; if getting outside in the wind didn’t interfere with my balance and the fact that I couldn’t get the side door to lock; if putting my walker in my car didn’t mean causing my finger to bleed or using all my arm strength. I slammed the door as I finished putting the walker in the back seat, balanced myself in the wind and let the¬†tears flow. Everything in me wanted to turn right back around¬†and just stay home.

But I got in the driver’s seat. Something in my mind just told me to press on…and¬†church was amazing. I returned home right after church ended and finished the coffee that was still warm in the coffeepot. With the family still at their church service, I got a chance to have some alone time reading and doing some thinking. I read a newsletter from my friend.¬†Her Christmas thoughts are¬†taken from the experiences in her Denver neighborhood. I know the neighborhood; I had grown to love the kids and families there as I¬†volunteered weekly with my friend’s ministry¬†the five years I lived in Lakewood. The kids still send me get well cards–I cherish them.

My friend’s letter focused on Hope. We miss so much in life, because we see limits-even putting limits on God in all that He is, all He¬†provides, all He promises. But God has no limits. He is limitless. I sat and pondered this. Lately my prayers have been mere few words, my frustrations in body leaving me with doubts for my future and what¬†I will become..how it will affect my family. I have tried to ignore it, but I can’t ignore it for much longer. I can’t plan my future, but I don’t want to be unwise about it either.

Why is it hard to¬†fully trust in the Limitless nature of God? For me, it means letting go of all I imagine or want¬†for myself. And I guess that scares me. But¬†it shouldn’t. Why would a Limitless God desire me to give myself fully to him, if He didn’t have a greater picture in mind?¬†And so I seek that faith…that trust…that Hope.

Michelle Tumes, “Dream.”

Chorus: There’s a dream in your heart and His heart is your prayer
You can move mountains with your life in His hands
He’ll tear down the walls and He’ll walk where you can’t
Have faith in the power to believe
He’s given you the dream

2nd verse: I pray your dream will leap beyond you expectations
You’ll see miracles He has no limitations
Listen to His voice a spark will ignite
Let Him be the strength to carry your life
He’ll raise your spirit high

Faith in the power to believe, He has given you a dream…




Filed under Adjusting to NF2, Family Times

Jingle Bells [translated]

Dashing through the snow [Taking a brisk stroll]
In a one-horse open sleigh¬†[Mel’s walker made the day]
O’er the fields we go [Down the street we roll]
Laughing all the way
Bells on bobtail ring [Pushing Basho was exciting]
Making spirits bright [Passing cars saw quite the sight ]
What fun it is to ride and sing [But in doing all these things]
A sleighing song tonight! [It gives me a blog post entry to write!]


Jingle bells, jingle bells, [Come on, Mel! Come on, Mel!]
Jingle all the way. [Work off all you ate on turkey day!]
Oh! what fun it is to ride [Family greatness you cannot hide]
In a one-horse open sleigh. [Is something I would say]
Jingle bells, jingle bells,¬†[Click, click–taking pictures on a cell]
Jingle all the way; [It can turn out to be a deceptive display]
Oh! what fun it is to ride [So notice any¬†strange appearance in Melissa’s stride]
In a one-horse open sleigh. [Rest assured she is okay] ūüėČ



Filed under Family Times, Funny Stories, Random, Uncategorized

It’s different this year…

I knew it would be, but I didn’t think it would be so hard. I think it started when thoughts became reality: this would be the first Christmas¬†in which I would hear¬†no music. Earlier this summer when I gave my cd’s away,¬†the facts were there, but not the season. I am glad I gave when I did…but now it is starting¬†to settle in–Christmas¬†in Silence. Oh, believe me, I sing in my head like a 24 hour radio station, but it’s not quite the same.

There is still joy in the start of¬†December. I am just navigating my way around¬†some¬†“lumps of coal:” some ‘differences’ between Christmas present and Christmas pasts.

Eleven years ago,¬†my Christmas season was not so ordinary either. Between my diagnosis¬†on November 18, 2002 to my first¬†major surgery December 18, 2002–I¬†had missed most of school but still completed my assignments, sat for hours in waiting rooms and bright-colored hospital rooms at¬†Denver Children’s in which I¬†met a whole team of doctors that talked to me about everything that I did not even grasp or understand and still tried to do fun seasonal traditions with my youth group and family.

Then I had my surgery. I think my biggest worry was thinking I would not make it home in time for Christmas. Like I said, I did not (at that point) fathom the seriousness of the surgery and its possible effects nor even living the rest of my life with this disease. I cried more about missing school than fearful emotions (nerd, I know.) The day of the surgery, my pastor and his wife joined my parents and myself in the waiting area. They had brought some gifts from their boys and the youth group. One was a stuffed chicken that played music and danced, “The Chicken Dance” song. For some strange reason this was huge for us back then.

At first, it was just us in the room. Then a couple and a¬†with a small¬†boy, maybe aged 4, joined us. Making casual conversation, they told us that the boy’s name was Gabriel. That is all I know,¬†but I can still see his face when we showed him the dancing chicken.¬†It was silent joy of the season. I saw him a few days later when my sister and I went downstairs to do the craft of the day. Gabriel’s dad was pulling him in a red wagon; my sister was pushing me in a wheelchair.

The craft was a folded photo book. They had loads of Christmas stickers and markers. I just used stickers. I still have the little booklet; It holds five of my favorite pictures from that hospital experience. And I was discharged on Christmas Eve.

scan0001 Note: the reindeer antler headband!

Present day–my handwriting is down to minimal use. My few Thanksgiving cards were simple (I liked it that way.) I¬†knew my Christmas cards would have to be too. Wanting a different but fun¬†greeting card to accompany my picture and¬†“<3 Mel” signature,¬†I decided on stickers. I got twelve cards done and noted how it was¬†like¬†a OT exercise to my fingers. I cried because¬†on a card I messed up my signature and smiley face so bad I was going to throw it away. Mom and Dad said¬†I should still send it.¬†It is not about my signature, smiley face or stickers–it is about bringing joy to my family and friends this season. I¬†need to focus my own joy on that aspect as I finish my cards this week.

It’s only December 1st.¬†I don’t¬†think gratitude should be limited to the month of November. I¬†have much to be thankful for even in the different¬†physical circumstances.¬†Not all is different: Already this upcoming weekend, I have fun holiday events that I plan to attend with¬†my family.¬†Christmas movies have captions and I realized that I can still enjoy the Nutcracker ballet even if I¬†don’t hear the music.¬†Ballet is beautiful. Tis the season¬†for a good cup of peppermint mocha, gingerbread cookies and peanut brittle; carolers, classic Christmas¬†novels by the fireplace, and trees decorated with lights and special ornaments; snow, parties with friends or family, and the times of solitude.

It is the season of giving, the most wonderful time of the year, the joy that is ours in remembering the greatest gift of all:

For to us a child is born,
to us a son is given;
and the government shall be upon his shoulder,
and his name shall be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.

Isaiah 9:6 ESV


Filed under Adjusting to NF2, Family Times, Hospital Trips

When waters still

I’m not a person who dreams of a vacation at the beach. I am not one you would find fishing while sitting in a boat, kayaking down a river or swimming in the ocean, signing up for snorkeling lessons, or being a lifeguard; I¬†don’t even like swimming pools.¬†Maybe because we didn’t grow up near beaches, but did fish/canoe in the mountain lakes and there was a nice hot springs about an hour from home that we sometimes went to in the evenings, big bodies of water are not something I enjoy. They scare me: the depth of the waters and what is unknown underneath¬†is what it is. That and I can only backstroke.

This past weekend, we visited family in Wisconsin. My uncle is very passionate about sail boats and sailing, so it was no surprise that we discussed a sailing adventure, as it was going to be a full moon and the winds would not be as bad in the evening. I had to humble myself and remind my lack of enthusiasm (plus I was feeling extremely sick all weekend, but no excuse) that even though sailing was nothing I loved, it was something that my extended family did as a family activity and I should at least follow along and enjoy being with them rather than moping in negative thoughts.

We had to borrow their jackets, gloves and hats as we were not prepared for how cold it turned out to be, but once we layered up, we were on our way. Me, getting on the boat, would have been a Youtube video sensation. ūüôā Once I got on the boat, I sat and didn’t move until we made it back to the dock. I must admit, I had momentary jealous thoughts,¬†because my cousins were balancing on the front of the boat just hanging on to the sail’s ropes. You would never catch me doing that sort of thing!

We get to the middle of the lake and it is a pretty view…darkness had settled in for the evening and all around the shores were lights shining. Then the wind stopped. Inner panic set in and the first thing I think of is C.S. Lewis’ Voyage of the Dawn Treader in the Chronicles of Narnia series where they experience a time of no winds. Of course we were not in a huge boat and have modern technology, so after trying to get a natural wind..we ended up having to use the motor to return.

I did find just sitting there–although thinking Narnia thoughts–relaxing, and when I stopped panicking, almost peaceful. Then I remembered how opposite the situation was for Jesus’s disciples:

And when he [Jesus] got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep.¬† And they went and woke him, saying, ‚ÄúSave us, Lord; we are perishing.‚Ä̬†And he said to them, ‚ÄúWhy are you afraid, O you of little faith?‚ÄĚ Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, ‚ÄúWhat sort of man is this, that even winds and sea obey him?‚ÄĚ Matthew 8:23-27

If anything, my weekend was much like the seas in this passage–just personally in all the¬†physical, mental and emotional. I am not sure why it all flooded in at the same time, but last night–once again crying myself to sleep–I told God that I didn’t know what to do about pretty much everything (mostly physical as that affects everything else.) I don’t even remember what my words were because I found myself in a deep, calm sleep. It was as if Jesus rebuked my waging body and instead¬†told my being, “Peace. Be still.”

I still woke up feeling the same physically…but felt refreshed mentally and emotionally.¬†There are going to be more storms in life…but I shouldn’t fear them: I am secure in The Lifeboat.


Filed under Adjusting to NF2, Books and Movies, Family Times

Weekend Rewind…

How much fun can you fill in a weekend?

Let me recount the ways:

It all started when we picked up my sister this past Friday from the airport. Her visit has been anticipated for weeks!¬†We did not give her much time to catch a breath as the first of festivities was Chic Fil¬†A for dinner.¬†Friday, July 12th,¬†marked¬†Chic Fil A’s¬†annual “Cow Appreciation Day” in which you¬†dress like¬†a cow¬†and get¬†free chicken. Last year I had a¬†harder¬†time gathering¬†a herd to come with me, but this year it¬†was the¬†complete opposite.




After enjoying our meal, we headed back home for dessert: Whoopie pies!!! (Yes, I know…the irony of it but they were already made the day before when we had company for dinner). It was such¬†a nice evening, we went out to the patio. Megan caught fireflies and we had some tea. We helped my mom pick the last of her green beans off the stalks and soon after called it a night.

Saturday started out relaxing. Around lunch we headed over to Beans-n-Cream to see my paintings then went to Stoney Creek Roasters for lunch.


We ventured to Yellow Springs for a few hours and enjoyed the shops. I started to get tired at this point, but after a LifeWater¬†and fruit snack,¬†I regained some needed energy. When¬†we got home,¬†dinner was served out¬†on the patio and¬†then it was suggested¬†that we spend the rest¬†of the wonderful evening playing put-put golf at Young’s Jersey Dairy.

It was already eight pm when we started out the door for Yellow Springs (again). Right before we got to Young’s, there is a sunflower field. It was too pretty to pass up the opportunity for¬†a few pictures!



We arrived at Young’s and began our game right at the start of dusk. By the time we were about halfway through the course, it was dark. They have lights on the course but not all were working. Considering my balance already when it is dark plus bending half over to swing my putter and the randomness of put-put course hills, I did quite well. My strategy: Don’t look down, just hit the golf ball. Results: Par in 1. (Just once but it was so cool!) We had a system down in which when it was my turn, whoever had my golf ball would place it on the ground at the starting point. When I made it in the hole, someone would bend over and retrieve it for me. Instead of waiting on the curb, I most often stood¬†on the grass course and just moved my feet if a golf ball came in my direction. I learned that the putter can be a used as a great cane when needed for balance and my family helped when needed too. It was a fun evening, and most of all, exciting to say that “I played put-put golf in the dark.”

Sunday I attended church with my family. There is no interpreter there, so as much as I tried lip-reading, the most I got out of the sermon was from the power point slides. The pastor spoke of God’s faithfulness. I couldn’t help but think of Third Day’s song “Your Love Oh Lord,” which is based on the verses in Psalm 36:

Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.

It was¬†a reminder to me of God’s faithfulness in my life.¬†I was able to think about this more as after lunch I finished a questionnaire for a research study on the social/psychological effects of living with profound hearing loss (or deafness). It was a lengthy endeavor that dug deep into the past–resurfacing memories and emotions…altered dreams. But it was good for me as well–to see the bigger picture since then and how God has brought me to this point in life of living with deafness.

Living with deafness also means when you go to¬†a play (unless you have an interpreter), you don’t hear anything. To celebrate birthday festivities, my older sister and brother-in-law joined us that evening for the La Comedia Dinner and Theatre production of Peter Pan.




We had an amazing meal (thanks to the waiter who went down and got my plate of food for me), amazing cheesecake (with “fairy dust” on top–aka sprinkles) and enjoyed a phenomenal performance!!¬†We were¬†close enough to see the lines that were attached to Peter¬†Pan and the kids¬†when they¬†flew around the¬†nursery.

Like I said, I could not hear anything. I take that back–I heard soft mumbling, but could not understand anything. Have you ever tried lip-reading¬†at¬†a play? It is not even worth it when you can enjoy watching facial expressions and actions on the floor anyway. I did, however, hear the drums when Princess Tiger Lily¬†and her tribe did their dance. That was my favorite part. ūüôā

And so our weekend came to¬†a close–one week over, another about to begin.

What makes a fun-filled weekend so great?
Let me recount the ways: family.


Filed under Adjusting to NF2, Family Times, Funny Stories