Thursday, February 13, 2014

On Life and Lack Thereof

First of all, I apologize for not writing anything for Hannah's Light in the last couple months. I would love to update this blog a lot more often, it's just that writing these kind of posts takes a lot out of me, and a "lot" as in emotional and mental and spiritual. I love writing here, I just don't have the strength some of the time.

Anyway...I feel ready to come back and write some more.

This week...actually, pretty much most of January and February...has been very out of control for me and my family. This week is not even finished yet and it has already been crazy. Next week will be even crazier. Do not worry, though, nothing of it has to do with Hannah's health!

In fact, now that I'm on that subject, I have some good news on Hannah's health. As compared to over a dozen trips to the hospital last year, Hannah's doctors are now saying this year will be much easier. So far we do not see any medical complications arising in 2014, which is a huge blessing! This year is even busier than last year, so extra trips to Mayo Clinic would only make things more stressful. Of course anything could happen with Hannah, but anyway, it is looking peaceful for her this year. And her speech therapist is trying a new method of getting Hannah to communicate with us with "Yes or No" questions, and it is cool to see.

Anyway, back to my original topic. It has been a few weeks full of high contrasts. Yesterday I was holding an infant less than a day old. Today my great-uncle passed away suddenly. One day I discovered a friend I had been trying to reach out to "replaced" me with another friend. The very next day I received an incredible gift from a senior in the community, the likes of which I'd never been given before and I feel so honored to have been trusted with. One day all I could see in a person's eyes was exhaustion and anger. The same day, of course, all I see in Hannah's eyes are smiles of that happiness I never really understood. I have cried tears of frustration, sadness, and joy all in less than twenty days.

Honestly, it is so interesting how issues you thought you had left behind years ago can come right back in a matter of seconds. It is interesting how people can have such a completely different idea of who you are as compared to who you really are, and you will never know about it. It is interesting how even one text, one honest inquiry of how your day was, or even one hug can make the clouds of darkness shrivel and cower. It is interesting how some people use misery as a drug to remedy any sense of lifelessness, and others have misery thrust upon them when they are least deserving of it. All this and much more has been on my mind for the past few days.

The topic that made me think of my little sister Hannah was the discussion of life. Mortality. Death. There is a man in our church whose been a core leader for many years, who everyone loves and admires. I have always remembered him as being very friendly and generous and he always says hello to "Hannah" like he would any other normal person (which means a lot to me.) Now this man is very sick and on his death-bed; the doctors say he only has a few weeks to live. He's the kind of man nobody would ever, ever wish this upon. And yet, he is being so brave through it all; he says he knows where he is going, and he has lived a good life, and he is okay with saying goodbye. What breaks my heart is that he is more worried for his wife having to cope with the loss than he is worried for his own health. It's so, so sad to watch, yet I'm amazed by how strong they are through this.

Here's a bit of a sensitive spot for me. Whenever topics like this come up - sickness, death, coping with loss - a part of me just wants to scream and cry and hide somewhere safe. Hannah's major surgery in January 2012 shook all of us to the core, myself included. I suddenly had to come to terms with the possibility of losing her. I suddenly had to start thinking about how I could prepare myself for such a time, what I would do after she was gone, how I could talk about it to God and my family, and what my role would be in helping my family with such a loss. So, every time I hear stories like this, it always brings me back to feelings of dread about Hannah's own life. Because her condition is so unique, we cannot know how much longer Hannah will be alive. It could be five years, fifteen years, thirty years...we have no idea. And when the mere thought of losing Hannah makes me feel like I have been hit by a train, it can be a bit nerve-wrecking to not know how soon this could be a reality for us.

But, at the same time, there are things that can give me a small sense of peace about it. For one, I know that when it's time to say goodbye to Hannah, she will go to her real home. And when she's there she will walk and talk and sing and dance! I can't wait to see Heaven, but what I look forward to most is seeing Hannah free of her earthly body and given a new and perfect body. Second, I am not alone in my struggle with this issue. I have a wonderful family I can talk to about this whenever I need to, and we are all on the same page with it. It is such a blessing that we all feel okay with talking about these heavy subjects with each other.

And the third and final thing is, of course, Hannah and all that implies. The way she smiles and laughs for me just because she is happy to see her big sister at the end of a long day. The way she recognizes words, faces, tones of voice, even the spiritual moods and attitudes circling around. The way that Hannah's life has pulled the rest of our lives so closely together; the fact that without all those long trips to the hospital, the camping out in waiting rooms, the emergency rushes and the tedious tasks of getting her up and putting her to bed...our family would not get along as well as we do now! Honestly, when you are forced to hang out in a hospital with your brother and sister for a week, the concept of "patience" takes on a whole new meaning. Now it's funny because of how used we are to that sort of thin (so when any of us hear a person complaining because they had to sit in a waiting room for, say, forty minutes, we're automatically judging!)

If I was going to write a post trying to explain how much of a difference Hannah has made on our family's lives - just us, not including everyone else who has met Hannah - I do not think I would be able to stop writing it. I would not wish a special needs child on any family, but I will also believe that Hannah has been the best thing that happened to us. She has been a blessing, a miracle, and dare I use the cliche, an angel. When the day comes that I have to say goodbye, I will miss her dearly, but I will see her again, and then we can have sister talks forever and ever!

I know I can never be fully prepared for such a time as letting her go, but I can focus on the positive things instead of dwelling on the negative things. I let myself dwell on those thoughts, and that makes the idea of mortality a bit easier to bear.

Thursday, November 28, 2013

Happy birthday

Today is Hannah's birthday!!

She is thirteen!!

We officially have four teenagers in the family!

It is so cool to know that Hannah made it this far. We have never really known how long we will have her. It could be twenty years or two weeks. But today? This is really cool. I love being able to say Hannah made it to teen hood. Call it weird, but I feel so proud of her!!

So what am I thankful for this Thanksgiving? Thankful that I get to spend the day with my little sister.

Wednesday, October 30, 2013

Sister's Tears

I cried tonight for Hannah.

I cried tonight because I heard her laughing at the angels flying above her head, and to make her feel better I had to pretend to see them too.

I cried tonight because I used to tuck Hannah in goodnight when I was little. I would read her books. I would sing songs to her for hours. I would think up funny words so she would laugh.

I cried tonight because I thought of something I used to pray every single night for over eight years. "God, please touch Hannah and heal her." I wanted to see her walk and hear her talk. I wanted to play with her, teach her how to ride a bike and put on makeup. I wanted it for me; I wanted it for my parents; I wanted it for Hannah.

I cried tonight because I couldn't feel any angels in that room, but there were plenty of demons waiting for me in my room. Like predators hiding in the shadows.

I cried tonight because of a truth I know deep down but I refuse to accept. Hannah's slowly deteriorating health. Time ticking by slowly. Her thirteenth birthday in just a couple weeks.

I cried because of the very thought of saying goodbye.

And I cried tonight because I realized I have not emotionally and mentally braced myself for that day.

And I don't want to. I don't want to think about it. I don't want to brace myself for anything. I just want to keep singing to her and sharing laughs with her. I don't even want to consider an inevitable future where I will no longer hear Hannah's laughter.

I...just...refuse to let the thought enter my head. I brushed it tonight and it almost crushed me.

And I cried tonight because I am my least favorite person on earth, and I can feel the demons in my room right this minute, and I can't shake off sin's grip on my shoulders nowadays, and my throat is slowly closing up. And I cried because even someone as wretched and unworthy as I has been given the incredible gift that is to know my little sister. I cried because of my darkness, and Hannah's light.

Thursday, October 24, 2013

An abiding joy

[Written by my dad in August 2004:]


There is little that shines a bright ray of supernatural light quite like a display of joy in the middle of difficulty or dark circumstances. The average person can be joyful when things go well, as planned, or better than expected. But there’s something extraordinary - maybe divine - about someone who is joyful when life deals out stress, pain, or unfortunate circumstances. This is why the apostle Paul wrote to the Thessalonian church: “Be joyful always” (1 Thessalonians 5:16). Abiding joy is a powerful witness of God’s power in a person’s life. The Old Testament prophet Habbakuk wrote about the source of this joy:

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the LORD, I will be joyful in God my Savior. The Sovereign LORD is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.”
- Habakkuk 3:17-19

Perhaps this is seen most clearly in the 19-century hymn-writer Francis Jane “Fanny” Crosby. She was blind from infancy, yet wrote over 9000 hymns plus 1000 secular poems and songs, including “Blessed Assurance,” and “Pass Me Not, O Gentle Savior.” As one reads Fanny’s biography, it is clear that the source of her ministry was a deep, abiding joy, which was found in something beyond circumstances. This joy is evident in her first poem, written when she was eight years old:

O what a happy soul am I! Although I cannot see,
I am resolved that in this world, Contented I will be.
How many blessings I enjoy, That other people don't.
To weep and sigh because I'm blind, I cannot and I won't!

This joy despite circumstances is also displayed in Hannah’s countenance. Unless she’s sick, in pain, or sleeping, she has a quick, contagious smile and a joyful sound in her voice. Sue and I often hear her making her “joy sound” (sort of a laughter) when in her bed alone at night. Even when she’s not feeling well, she will smile that joyful, “I’m glad to see you” smile. Granted - Hannah is most likely not fully aware of her condition. Hannah probably doesn’t realize who she is and what her situation is. She probably has not consciously chosen to be joyful despite her difficulties. If you quote Habakkuk 3:17-19 to Hannah, she probably won’t understand what you’re saying. Nevertheless, her joy shines a light to others.

A troubled teenager once met Hannah, caught her smile, and said, “Wow - I think I have problems. Here’s Hannah, with all her problems, and she’s happy. Wow.” That’s the point. That teenager was given some perspective that day. That’s the effect of an abiding joy. That’s the effect of Hannah’s Light.


Wednesday, August 14, 2013

the two-mile radius

As long as I can remember, Hannah has done this cute but kind of, well, odd thing. It makes me smile and it makes me think. What is it? It's easy. First, get Hannah's attention. Then when she's paying attention to you, ask her "Hannah: what do you see?" Here's where it gets odd. When she hears that question, she'll look straight up, like she's looking at the light on the ceiling. What makes it even odder, however, is that she doesn't just do that indoors to look at the ceiling light. She also does that outdoors or where there is basically nothing to look up at. Every single time, for the almost-thirteen years of her life, Hannah has done that.

All of us have speculated what she is looking up at. Maybe she is used to the ceiling light being there, or she just likes looking up. A couple of us, my dad included, suggested that perhaps she is looking at something we can't see. After all, think about the question: "what do you see?" Maybe it means, "what do you see that nobody else can see?" That could mean anything. Well, frankly, for a long time, I was pretty doubtful about that. I mean, what could be up there that I can't see and Hannah can? Certainly not, say, an angel, right? Why would Hannah be able to see those? It doesn't make sense to me.

Or I should say, it didn't make sense to me.

Recently I was talking with my younger sister (not Hannah, the sister in-between us) about spiritual things, and she brought up her 'sixth sense' of demonic and sometimes angelic presence. This is something that has been with her for about two years now and she has rarely talked about it. However she has recently been more willing to bring it up and tell us about it, and I had the honor of hearing her story.

My sister describes it like knowing someone is around a corner or behind a closed door; you can "feel" that they are there, but you just can't see them. She also said that good moods make the demons back away as if they are annoyed or frustrated, and bad moods seem to attract them or make them swarm in. She even said she can sometimes feel a demon on my shoulder when I'm in a bad mood. I don't know what to make of that yet, but I was a bit shaken when she told me. It just goes to show that a negative spirit saps the life out of you - body, mind, and soul.

Anyway, that is not the point of this post. Of all the amazing things my sister shared with me, one thing stood out among the rest by far.

It was while I was asking her if she felt angels or demons around members of our family (that was where she told me that demons had been on my shoulders). I asked her about Hannah. "What about Hannah? Are there any demons around her? Is that why she cries sometimes?"

My sister's answer was profound. Here is what she told me, word for word.

"No, no, Hannah is so protected. Demons can never get close to her." I asked her what was the closest the demons had gotten to Hannah. "Two miles. They never get closer than two miles."

Two miles. And there were demons touching me. But she wasn't finished.

"And you know that whenever we ask her what she sees, she looks up? Well, she's looking up at an angel protecting her. An angel is up there watching over her."

An angel. That is who Hannah "sees". I have no idea what angels look like, but in Scripture angels had to say "don't be afraid" every time they approached a person. That's enough to assure me that angels look pretty darn frightening and there's a whole lot more to them than white wings and a halo. Demons have to be scary-looking too, though; testimonies of people who have actually seen demons said they were hideous beyond description (makes me think of shinigami as portrayed in the anime Death Note). But this angel is fearsome enough that demons can't get closer than two miles from Hannah. And this angel is strong enough to hold that big a radius of protection around her.

I may have been doubtful before, but I am not doubtful anymore. Now I know that, all that time, for all those years, Hannah was looking up at an angel. All those years, someone was watching over her. An angel was above her head and it's mere feet from me right this minute. And what's more, the demons don't dare get closer than two miles to her.

Now is that incredible or is that incredible?

Should I be frightened? Well, my perception of reality was certainly rattled a bit because of that conversation with my sister. I won't see a bad mood as just a "bad mood" ever again. And PMS is no cop-out. But I also feel blessed beyond description. Blessed that I am the older sister of a little girl that the demons don't dare touch. Blessed to know that even when Hannah was crying with pain or lying in a hospital bed, an angel was keeping close watch over her. God never forgot her. God never left her behind. There was always someone protecting her, even in those darkest and most confusing moments of her life. That is something that I will take with me for a very long time and I will hold it close to my heart.

Nope, any last doubt has left me completely.

Sunday, July 7, 2013

Monsters University


One of Hannah's all-time favorite movies has always been Disney-Pixar's Monsters Inc. I love that movie too! All four of us grew up watching it and have loved it for as long as it has been out.

When I say Hannah has a "favorite movie", I mean one that makes her laugh the most, smile the most, or calms her down the fastest when she is distressed or not feeling well. If we're out of the house and she's upset, one of the things I do to calm her down is promise to put in Monsters Inc when we get home, and it works! There were days when Hannah would watch that movie twice a day, and sometimes every day. Now she watches it once or twice a week at the very least.  Mike Wazowski and Boo are her favorite characters. If I mention them or point them out on a poster she recognizes them instantly and brightens up. I can even quote Mike Wazowski and she picks it up. She has a few Mike Wazowski toys too.

Hannah's profound love for this movie has grown on me over the years, and I love it more and more as I get older. I have it memorized word for word.  Seriously...I can recite the entire movie.

Naturally when we heard about the prequel, Monsters University, in 2011, we were ecstatic. Now it's 2013 and the movie has finally arrived!



We almost never take Hannah to the movie theater. It's too dark, too loud, and there are too many people and seats for her comfort level to handle. But this is Monsters Inc! We could not pass it up! A week ago we found out Monsters University was playing in the town 15 minutes from our house, in contrast to the bigger theater an hour away. Yesterday afternoon we piled into our non air-conditioned van and went to see it, after two years of waiting, we could finally see it.

Now, was it a good movie?

Of course it was...I LOVED it. The younger versions of the characters - Mike, Sulley, even Randall - were so sweet and loveable. All the nods to the original were abundant but not forced. The plot was somewhat predictable but still fun and intriguing. It made me laugh and it made me teary-eyed. All in all it was a fantastic movie and a great companion to Monsters Inc. I felt like a big emotional mess, after growing up on the original and now seeing new life brought to the characters and the monster world, and it doesn't help that my brother goes to college in just a few weeks...!

But I don't want to get into all my messy emotions.  Part of what made me love the movie so much was watching Hannah's reaction. We told her all week what we were going to see so she knew what was coming, and was very excited as we got to the theatre and found our seats. As soon as Mike appeared Hannah was laughing because she recognized her favorite character. Even when other characters from the original Monsters Inc showed up she would start laughing again. And every time I saw her she was either smiling or laughing as the movie continued.


It was just so cool to see Hannah enjoying herself so much over a movie. A lot of times we "have" to watch what we want to watch and pop in a movie Hannah would never enjoy... like Sherlock or Silver Linings Playbook or Hunger Games. But I loved watching a movie I knew she was having a great time watching too. I haven't seen her that elated about a movie in such a long time, it was impossible not to enjoy myself.

So, I had a fantastic time yesterday watching Monsters University. And I think hearing my sister laugh for half of the film's duration made me love it even more. Even when I mention it now, she is smiling again because she knows. So I don't care what anyone else says, it was an awesome movie that I want to watch again and again with Hannah, because it's one of the few movies we both had fun seeing together. Sister bonding time with cartoon monsters, it never gets old.

Guess what I'm buying for her this November for her birthday! Yup, Monsters University DVD!




Monday, May 13, 2013

what I can't do

As Hannah's older sister, my perspective on her has changed over the years. When I was younger I was aware she was unique and did not have all the health benefits my brother, sister, and I do. I knew there was something different with her. But at the time I thought she was just going to take a longer time to grow. I thought she would eventually start talking and even walking. I remember doing flashcards and Dynavox with her for entire afternoons, hoping she would say just one word. I remember my dad holding her up on one end of the room as we sat on the other, cheering her to take 'steps' so that she might learn to walk. And, I constantly prayed that God would 'touch and heal' her.

Never happened. No inspirational Christian flick here. Not our division.

Now I'm older, and I hate to admit it, but I'm also bitter. I know Hannah is never going to talk or walk, at least not in this life. I know she can never tell us what her favorite color is or why some things make her laugh and some things scare her. I know that, odds withstanding, I will probably have to watch my parents bury their youngest child. I also understand, seemingly more and more, what we cannot do because of Hannah.

It's become sort of a default in our family that when we want to go somewhere - a shopping trip, a museum, even a walk - Mom has to stay home with Hannah. Mom knows Hannah the best and is her supreme caretaker, getting Hannah ready for school in thirty minutes when the rest of us as a team could do it in fifty. That means a lot of cool events that should be considered 'family events' are not.  Here is a prime example: the Indianapolis 500. My dad has gone to this race for a long time and knows the history of the track, the racers, the legends, the whole she-bang. My first race was in 2008 and since then I've loved every bit of it. Whether you're into racecars or not, the experience is mind-blowing and unforgettable. We can't go every year but since 2007 my dad has taken all of us to the race.

And guess who stays home while we're at Indy? Mom and Hannah.

And I wish I could say the Indianapolis 500 is a family event for us, because it should be. It's something entire families should experience together. But taking Hannah to the race is out of the question. She's in a wheelchair and she gets dehydrated quickly...so going to a place filled with stairs and stands on a day that can easily top ninety degrees? No...way.

So where does that leave Mom? Staying home with Hannah again, waiting for us to come back and tell her what an awesome time we had at the race.

She wants us to go; Mom would never make us cancel a trip just for her (I have never, ever known her to have the mentality of, "if I can't go, then no one can!"). My dad wants us to go so we can experience it. I want to go. But at the same time I hate myself for leaving them, as if to say, "Mom, Hannah, don't get in the way of my good time!". Unless training someone else to care for Hannah overnight works out - something we've done before but never for such long stretches - trips like the Indy 500 can never be a true 'family' experience. And that just kills me. So, because of Hannah, something that could be a family tradition has dwindled down to 'Dad gets the kids away from Mom for a week' tradition.

That is just one example. I could complain all day; I'm a very good complainer. I have literally (yes, literally) lost count of how many times we found an ad for an awesome campsite, or a convention, or a county fair, or a historical site, or a petting zoo, and because of Hannah we could not go. I have lost count of the times my brother, sister and I begged for our parents to take us to one stupid little thing, because "it's the chance of a lifetime!" and "it's going to be so much fun!" or the good old "It's Star Wars!", and the response that always ended the conversation was, "What about Hannah?" Countless times a cool event came up and we had to decide whether to turn it down or split up the family, and because we love Mom and Hannah and honestly detest constantly deserting them for our own pleasure and entertainment, we've chosen the former more than not. We are all aware of that default in our family and we hate settling for it.

I'm not saying my whole upbringing has been void of fun and games and petting zoos. Nor am I not acknowledging this one wonderful lady who occasionally takes care of Hannah for a day so we can have a family shopping trip. I am saying we tend to crack up at the word 'vacation' or the phrase 'family experience'. To that we tend to say, "Take a hike.. preferably, up a steep trail. In the mountains. In the wilderness. You might as well since you're not in a wheelchair."

And do you know what hurts the most about all this? When my parents were homeschooling us, they had a dream of what it could look like. My mom had this amazing plan that when we were studying the American Revolution and the history of our country, we would have a 'family trip' out east to see Washington, DC, battle sites, reenactments, all the good stuff. They wanted to give us an experience outside of a textbook or a classroom so that history could come alive, and not only would we learn about America in the best way, but we would have an incredible family-bonding experience in the name of real education. That was my mom's dream. Because isn't that what homeschooling is supposed to be about? Isn't that the point of homeschooling in the first place?

Hannah came along and that dream was shattered. No trip out east. No Library of Congress, no Declaration of Independence, no White House. It was a dream and it is a dream and it will always be a dream. And now that I'm older, I know that. That is just one other example.

So why am I saying all this? Why am I bugging you guys with my complaining?

A few months ago, my dad popped an interesting question to us. He said, "We could all list things we cannot do because of Hannah. What about things we can do because of her?" (I might have touched on this on earlier posts.)

The scary thing is that none of us had an immediate answer.

But I'm getting a few ideas. One, of course, is this blog. Another might be an installed determination in me to carry out the dream my parents had for my education to my kids, as I plan to homeschool them. Or maybe always having recreation, entertainment, and pleasure at our disposal might have done something to our family we did not want done. Who knows? If I had been given all those conventions, camping trips, and museums, would I have become more selfish, greedy, or ethnocentric? I have no idea.

But it's something I really have to think about for these next few months. I have to stop resorting to the bitterness clogging up my soul. I have to stop thinking about what I was deprived of because of my sister, and rather the things I have been blessed with.

The best part is that when I realize I'm really thinking along those tracks, I feel more at peace. I feel calmer. I feel more hopeful. Most of all, I feel like the love my sister constantly shows to me is, quite possibly, something I can pass on to others. If I overcome my bitterness.

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