Saturday, May 31, 2014

Quick Prayer Request

As some of you may know, Hannah does not do well with heat. She gets overheated very easily so warm temperatures can be dangerous for her. That is why it is a big priority for us to have two air conditioners in our house all the time: one for the living room where Hannah is 90% of the day, and one for her bedroom. (This is one reason why I hate summer...cooped up inside with the AC running because I have to watch Hannah instead of go outside is not very fun...)

But anyway, on to the prayer request. Our van - which is installed with a ramp to get Hannah in and out - isn't in the best shape. It's getting kind of rundown and old but buying a new one would mean our insurance skyrockets so all we can do is take care of this one as long as we can. But it's summer, and now the air conditioner in our van has stopped working. This wouldn't be a problem if my mom wasn't taking Hannah to Mayo Clinic on Monday, which is a good three-hour drive. We tried to get it fixed at the local repair shop but they didn't have the right part, so we can't get it fixed until the following Thursday.

My prayer request is that the weather won't be too hot on Monday, that Hannah won't get overheated and it will be a safe trip for both Hannah and my mom. I just really hope that when the AC in the van gets fixed it will STAY fixed so we don't encounter this problem again! If I won the lottery I know the first thing I would buy is a new van with doors and a ramp that actually open and close properly, and a working AC!

Thanks for reading and please keep Hannah in your prayers on Monday!


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.
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