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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

Morning routines.

Yesterday, I had a hair appointment. Agenda: Turn curly into straight and trim. I think I had excellent results. I am excited to finally reuse my hair dryer and curling iron for a tad curl at the bottom. I like to curl my hair out using a big 1 inch iron. I have a history with curling irons. Growing up, I liked to curl my bangs with this, then add tons of hair spray:

In junior high, I decided braces needed a cooler hairstyle, so I let my hair grow really long and curled it in spirals at the bottom every morning. Ah, yes, those were the days of self-discipline to be in bed early and rise early without any help from a cup of coffee in the morning. 🙂 I still had my long hair in high school but found myself rushed for time in the mornings, so most often it was just long and wet when I arrived to school. I got my first perm my senior year of high school. I loved it. I loved not having to spend time in the morning drying my mass loads of hair when I could just put in a little mousse and be on my way! Since then, I have gone from long curly, to long straight; short straight, to no hair, to puffy hair growing in, back to short straight hair, curly and now straight. Grass always seems greener on the other side when I change from one style to the other. I decided that I am thankful for my hair, no matter how thin with random bald spots that it may have.

As kids, we liked to watch Little Women (1994), a movie based off the Louisa May Alcott’s novel.

It is a wonderful story of a family with four girls. Their father is fighting in the war (Civil War) and they are all becoming different ladies with their own styles, interests and dreams. They are not a rich family, but learn to bless others who are in need. One Christmas, they share their meal with another family, singing “Ding Dong Merrily On High” at the top of their lungs on the walk to their destination. The rich old neighbor has a grandson, whom they come to call “Laurie”; he becomes like family and in the end he does (along with his tutor, named John.) 🙂 Their stories of growing up together with sister times of tears and laughs, to finding love and starting their own families all in one piece is a joy to watch. I really like the story. We always joked about the movie, because growing up…the personalities of the four girls matched to my sisters and I almost exact. Which one of the March sisters do you think I am??





You can read here for descriptions in the first paragraph of the plot if you are not sure of their characters. http://en.wikipedia.org/wiki/Little_Women_(1994_film). You will note that it talks about the way they called their mother, “Marmee”. We adopted that into our family and still sometimes call our mom by that term. Very affectionate indeed. 🙂 Speaking of which, my mom did this artwork with stencils. It hangs in my room. I like looking at it every morning, of course, my hair is not always done that nice in buns or braids, but I do have a hat sort of that style just not with ribbon attached. 🙂

Sisters. I love my sisters. Sure, we have had our fair share of quarrels, but they are my sisters and always will be. We used to do our hair together in the upstairs bathroom. We talked to each other in the reflection of the mirror instead of turning our heads. No wonder I got so good at lip-reading. 🙂 I am sure we had some funny quotes about our hair, but since I cannot think of one, I will tell you my favorite off Little Women. The March family gets word that their Father is wounded and Marmee needs to travel to help him. They have little money, so Marmee sends Jo to ask Great-Aunt March (who has plenty) if she could spare some for the journey. Jo does not have the heart to ask for money, so she sells her hair. Jo takes off her hat coming into the room and Amy says, “Jo, how could you? Your one beauty.” HAHA. If my one beauty were based on hair, then I would be in quite a pickle. I am so glad God does not see it that way either. He sees the heart (I Samuel 16:7).

As I go get ready for the day, I will remember (1) God knows the exact number of hairs that are left on my head, so there is no need to obsess over my bald spots (Luke 12:7); (2) I am fearfully and wonderfully made (Psalm 139:14); and (3) God will provide, so I do not have to worry (Matthew 6:25-33). That already makes getting ready in the morning quite a pleasant experience. Add a cup of coffee and sunshine…it is going to be a good day!

Enjoy your Friday. More to come…

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Filed under Books and Movies, Family Times