Tag Archives: Easter

Sounds of the Soul

Something’s missing.

That is how I have felt these past few weeks. I don’t have to embark on a search party to find what I am missing, because I feel it deep down. Deep in the soul. I know what it is: it is music.

I think the feeling of void came flooding back when I was making a short list of important songs for my parents before they left for their trip. One song being an old favorite by rock band Petra, I spent a few hours one evening between email replies singing to oldies by watching music videos. I admit–I even watched my boy band. Yes, this is extreme music voidness if you find yourself reliving those junior high obsession heart-throb days. But there was no turning back; Plus One’s hit is forever, “Written on My Heart.” ūüėČ

And so Easter morning arrives…yesterday was gorgeous. The sun shining as if radiating glory and proclaiming, “He’s Alive!” Not that Easter morning has to be sunny. Jesus is very much alive today as He was yesterday or will be tomorrow. That is the hope and joy of Easter. (Hebrews 13:8.) But the sun made it extra special to say the least and I was excited for worship that drive to church.

My excitement wore off as we started singing. I only knew two songs. Sure, I could read the lyrics on the power-point and could make-up tunes of how I thought the song sounded based on the tempo I was lip-reading (a bit fun, almost like imagining character voices in your head when reading books), but it is not the same. The void came crashing back and instead of Easter joys, my mind started meddling with self-pity.

The sermon starts and I am not getting much out of it, because there was no sermon notes left in the foyer, nor did they use the power-point unlike usual Sundays. My eyes are not lip-reading well that far from the pulpit, so I start thinking of music and my favorite Easter songs, such as “He’s Alive” by Don Francisco. Then in almost in demanding anger, I say in my head, “I want to hear music!” The music void.

I sit and think. Then it dawns on me, like the morning sunlight: My ears are dead and useless to me now, but one day, they will hear again. And what a sound it will be!!!




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

Needing a Guide.

Amidst the winter storm watch (and a nice load of snow), I went to Columbus to visit my sister and brother-in-law for the weekend. My sister had invited me to her work’s¬†floral class where we made our own Easter/spring-like vase centerpieces.


After we finished our bouquets, the rest of the time was for an experiment. My sister had never made this display piece before. With a room full of creative ladies–the event turned out to be¬†a great social time of sharing ideas and learning more about flowers. I just tried to follow along as best I could. ūüôā The result: a bunny rabbit¬†centerpiece! (The rabbit is white carnations…the tail carnation sprayed pink. Paper ears, but rose petals for the inner ear. And some sort of filler is sprayed black for the eyes/nose.)

0324131632 @ The Flowerman. Columbus, OH.

I probably could have made the bouquet centerpieces on my own–just due to floral experience [I worked three summers in high school at a flower shop]–but I don’t think that they would have turned out as beautiful as they did without the coaching help from my sister. I don’t remember flower names, so if¬†I went to order flowers¬†I would be at loss. I would not have thought of burlap, lace or raffia for the jar decorations, let alone using canning jars for the vase. Having the guidance from someone experienced made all the difference.

Guidance can come with just about anything: My parents helped guide me in making wise decisions as I grew up; I see it in my physical therapy sessions as my PT shows me stretches that help my body; my doctors guide me in helping me understand my MRI results and researching the best treatments or actions to follow; my pastors and Bible study leaders at church encourage and guide me to become more Christ-like.

For me, guidance is important. I think it goes with my personality…not a leader, so I¬†lean on others when I make decisions.¬†I am slowly learning to make the decisions on my own…building confidence and taking responsibility for my actions.¬†And it is hard. Being¬†a passive personality feels like sitting on the fence; like being afraid of the 50/50 chance of getting it wrong or being the only one doing it different.

In Mel Gibson’s movie, The Patriot, Benjamin¬†Martin gives his new daughter-in-law the necklace that had once belonged to his late wife. As he puts the talisman of Polaris¬†around her neck, Benjamin says, “It’s the North Star. That is the only star in the sky that never moves. It is constant, unwavering. A guide.” I¬†wrote this quote down¬†in my¬†“favorite quotes” journal;¬†to think that something in this ever-changing world is constant–a guide.

Then I think of my journey in life: ever-changing and wavering as if being blown by the wind. But I have a stronghold. God has given me his own constant guide: his Word:

Psalm 119:105, “Your word is a lamp to my feet and a light to my path.”

Psalm 46:10, “God is our refuge and strength; a very present help in trouble.”

Jeremiah 33:3, “Call to me and I will answer you, and will tell you great and hidden things that you have not known.”

I am never alone–in everything–God’s presence¬†is here: “It is constant, unwavering. A guide.” ‚̧


Filed under Adjusting to NF2, Family Times

One step at a time.

Guess what happened at Physical Therapy today!?!?!?!


Last time I have been able to do that was right after my surgery…freshman year of high school. Wow. ūüôā It was not fast and I was super wobbly, but I did it! All the practice of¬†standing on one foot and other balance exercises have paid off.¬†It must have looked something like a baby taking the first steps on their own. I was the only one in the room too! Usually the room is full of other patients. But no one saw it: only me, my PTA and God. ūüôā

Habakkuk 3:19 says, “The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights.”¬†My weak¬†ankles reminds me of another girl with weak ankles: Much Afraid. Have you ever read Hannah Hurnard’s classic work, Hind’s Feet on High¬†Places? Much Afraid is the main character. Although I have never read the¬†original book, I grew up on the¬†junior book¬†aimed for¬†children or teens.¬†I remember her journey…from the¬†Valley of Humiliation to the High Places. Her companions are¬†“Sorrow” and¬†“Suffering.” The journey is hard.¬†But when she makes it to the High Places, the¬†Shepherd is there. Such abounding¬†joy follows.¬†You can read the first chapter here: http://files.tyndale.com/thpdata/FirstChapters/978-0-8423-1394-0.pdf. If you enjoy that then I really recommend the book. I look forward to reading it soon myself!

I find that I can be like¬†Much Afraid: timid, physically challenged (she has weak–and I believe crooked–ankles as well), set out on a hard journey and¬†there are some days¬†where¬†the¬†mind tells the body: “You¬†will never make it.” I have been there. Life is hard.¬†The joy of the celebration of Easter means that my companions do not have¬†to be¬†“Sorrow” and “Suffering”; although Jesus never said that¬†I would NOT have them, but to have hope–because He is greater than these things. Jesus conquered death. I do not need to fear even in spite of them: “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.‚ÄĚ John 16:33 [Italics emphasized].

Much Afraid’s story reminds me of my favorite song. Ever. I know¬†I have said that I have many favorite songs, but this–this is my life song (so to speak). When I was little, I wanted to learn how to play it on the piano and sing it in church.¬†It is by Cindy Morgan called, “I Will Be Free.” Instead of my own explanation, I thought it would be better for you to just read the lyrics. I also found a great video of her playing live, so you can hear the song and read the words at the same time: http://www.youtube.com/watch?v=0ySp0gktlN4.

The mountains are steep and the valley’s low

And already I’m weary but I have so far to go

Oh, and sorrow holds my hand and suffering sings me songs

But when I close my eyes I know to whom I belong

And who makes me strong

I will be free, I will be free to run the mountains

I will be free, free to drink from the living fountain

Oh, I’ll never turn back ’cause he awaits for me

Oh, I will be free

A wise man, a rich man in pauper’s clothes

A shepherd to lead us through the land of woes

Though many battles I have lost, so many rivers yet to cross

But my eyes behold the Son who bore my loss and who paid the cost

I will be free, I will be free to run the mountains

I will be free, oh, free to drink from the living fountain

Oh, I’ll never turn back ’cause He awaits for me, oh

Oh, I will be free, oh

Oh and I’ll dance on silver moonlight and I’ll walk through velvet fields

Oh, and I’ll run into the arms, the arms that set me free

Oh, I will be free to run the mountains, I will be free

Free to drink from the living fountain

Oh, I’ll never turn back ’cause He awaits, oh I’ll never turn back

Don’t you ever turn back ‘Cause someday, someday we’re gonna see

That we will be free

[“I Will Be Free.” Cindy Morgan. A Reason to Live. Sony, 1993.]

Have a blessed Easter weekend. I will continue my thoughts on life next week…


Filed under Adjusting to NF2, Books and Movies

I am a dandelion.

I am not sure how this happened–but I noticed this morning that our yard, both front and back, is now a field of dandelions! As I walked out among them in the grass, I could not help but notice there is a sort of beauty to the flower¬†of this not-so-favorite-weed.¬†It sure does add color! But I also was hopping around trying not to get my slippers yellowed either. ūüėČ

Today I saw that dandelions can resemble human personalities: they can either¬†be an introvert–

Or an extrovert–

See my concept?? ūüėĬ†I actually just learned something new about dandelions. I was looking up the correct spelling, because I always want to spell it as “Dandilions”. In doing so, I¬†found a website where it discusses that dandelions can be used¬†as a herb for medical treatments. I never knew that before~even¬†if I did, I guess I forgot!¬†It is amazing what these little¬†weedy flowers can¬†be used for:

Dandelion is a rich source of vitamins A, B complex, C, and D, as well as minerals such as iron, potassium, and zinc. Dandelion leaves are used to add  flavor to salads, sandwiches, and teas. The roots are used in some coffee  substitutes, and the flowers are used to make wines.

© 2011 University of Maryland Medical Center (UMMC). All rights reserved. UMMC is a member of the University of Maryland Medical System.
Read more: http://www.umm.edu/altmed/articles/dandelion-000236.htm#ixzz1qpHovTf3

I thought that was interesting, especially when I read about how they were used in different cultures throughout history to treat different illnesses.

Another thought about these dandelions–they are not lilies, but this verse came to mind: “…Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you,¬† even Solomon in all his glory was not arrayed like one of these.” Matthew 6:28b-29.

I have to admit…I am a dandelion. I am a sinner; God could look at me and say, “Yucky weed!” But instead He sees me as a beautiful lily. He created me¬†and sees the potential in me that I am still trying to find; something like¬†finding use for¬†dandelions¬†in treatments and food. He sees this in every dandelion, not just me. This week as we prepare for the Easter weekend–remembering Christ’s death and resurrection–there is hope for us as dandelions.

For¬†while we were still weak, at the right time¬†Christ died for the ungodly. For one will scarcely die for a righteous person‚ÄĒthough perhaps for a good person one would dare even to die‚ÄĒ¬†but God shows his love for us in that¬†while we were still sinners, Christ died for us.

Romans 5:6-8

That is the beauty of the dandelion in me. God does not see me as a sinner, but His child.

More to come…

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