Monday, April 30, 2012

When God Nudges...

When God nudges, beautiful things happen. When God hears the prayers of a lonely, broken girl, He can work in great ways. When God works, people come together.
It was a Sunday, and the last thing I wanted to be was alone. I knew there was a party going on at my friend's house, and my soul was in one of those restless longing phases, and I just wanted someone to come and knock on my door. I wanted company, wanted comfort.
And then I got the email...
I got the email that warmed up my heart and brought a smile to my face and tears to my eyes.
It was one of those emails that said everything I needed to hear at that time, that ministered to me in the place I was at, that gave me hope... and provided the comfort I was longing for.
It was one of those emails that can only be described as orchestrated by God.
In the first paragraph of the email I found the words, "God has prompted me to write you a wee note."
Like I said, when God works, beautiful things happen. When God works, people come together.
I couldn't wrap my head around the beautiful truths and encouragement I found in that little message. It was like God had reached down and said, "Alisha, I haven't forgotten about you. You may feel lonely, but I am here. You want comfort, but I am already waiting and all you have to do is receive. The gifts I give you are good, I know what you need."
Because when God works, people come together. When God hears the prayers of a lonely, broken girl in need of comfort and answers and hope, beautiful things happen.
When people respond to God's gentle nudges, they can be used as vessels of hope, the answer to the prayers of a girl miles away.
I wish I could find the way to describe everything I felt reading that email. Because it was beautiful, and it gave me hope, and it made me smile, and it reminded me of the truth that is so easily forgotten as I'm walking through the Valley of the Shadow of Death.
I wanted a friend that day, and I did get one, just not in the way I expected. It wasn't a face to face conversation that restored my soul, but a simple email from a beautiful woman miles away.
When God nudges, beautiful things happen. When God hears the prayers of a lonely, broken girl, He can work in great ways. When God works, people come together.

Saturday, April 28, 2012

Over a cup of coffee

Today is turning out to be a better day. I haven't yet thrown up, or had any moments of serious pain (Serious as in makes me double over and gasp for air.) or had any times where my heart was beating so fast and I was so lightheaded and dizzy I thought I was going to pass out. I am still exhausted, though. But today was better then yesterday.
I went to the park today. After many text messages and one voicemail saying that if I didn't call her back and let her know I was alive then she would show up on my door step, I was convinced of needing to go to the park. (Actually, I was convinced by the time the first text message came around, but they just kept coming!)
Anyway, I walked to the park with 3 little (?) girls in tow.
And she brought me coffee. And we sat on the bench at the park while her 2 girls and my 3 raced around.
And we drank the coffee, and we talked, and I felt better. It was like finding that moment of calm in a storm, where you can just sit back and relax and everything that mattered rolls off your shoulders for a few hours. It was like that.
Over a few hours and a cup of coffee, I felt ok again. It's hard to be mad at someone who brings you coffee. (I'm not actually mad at Paula. I will hide under her porch because I love her.)
Just for those few hours, nothing else mattered. I was there, in that moment.
Life happens, and bad things happen, and there's nothing anyone can do about it except roll with it. But once in a while, in your crazy life, something happens that reminds you everything will be ok in the end, to remind you that you aren't alone in this, that things will get better, that you won't always be this sick or this exhausted or whatever.
For me, today, it just happened to be a couple hours at the park with my mentor over cups of coffee.
For those few hours, I felt like everything was going to be ok, that we will find answers to whatever this mystery disease is, that I won't always be this tired or this sick or this upset over not knowing. It will get better.
In these hours, God reminded me of something ~ Sometimes He calms the storm, and other times He calms His child.

Friday, April 27, 2012

No where to go but up

It's been a rough week. I was sick (Symptom flare ups galore and, on top of that, a cold!) and my brain was absolutely fried, which made school an absolute joy this week. (Not!) Today was a bad day. I was in one of those mad-at-the-world phases I go through whenever I'm just exhausted. I was mad at people over reasons that didn't even qualify as reasons. Really I just needed someone to be mad at.
I threw up lunch, and then I started crying and basically it was just a big mess.
At least when everything is awful you know where you stand, and it can only go up from there.
And after a much needed nap, things did start to look up.
I laid in the sun, listening to my uplifting inspiring music playlist
I took my puppy for a long walk (And she did so good! So proud of her!)
I ate fondue! I know it was bad for me, but if there's anything that can make you feel better, it's chocolate!
Tonight, I'm going to curl up in bed and watch some Grey's

When you're at the bottom, there's no where to go but up.

Thursday, April 26, 2012


I woke up this morning wanting to watch this video.

 It reminded me that I am resilient.
It's ok if I never get out of my sweats and a tee shirt today.
It's ok if I only make it half way through a day of school before needing to curl up with a cup of tea and some Private Practice.
It's ok if last night my mind was racing and I was wondering how I'm going to manage school, and what I'm going to do after school and what I'm going to do with my life, because there's a good chance I'll still be sick, and that would change everything.
It's ok if I can barely focus on my math this week because my brain is absolutely fried and I can't think logically about anything much less calculus.
It's ok... because I got out of bed this morning.
It's ok because, this morning, I opened my eyes and got dressed and did my spanish assignment and an english assignment. I did that.
It's ok that I'm not having that great of a week, because I'm getting through today, and who knows what tomorrow might bring ~ if I'll feel better tomorrow.
It's ok... because I'm here. I'm here and I'm still breathing and I'm still trying and doing what I can.
I'm resilient. Just for today, I'm going to let myself believe it, to not try and argue it. I am resilient.
Everything will be ok.

Tuesday, April 24, 2012

Every Minute Counts ~ What a Cure would mean to me

I loved the line "To live an extraordinary life; accomplishing all the dreams and hopes God is placing in her heart."
THAT is why I want a cure for GSD. (The chocolate and ice cream would be good too!)

For me, finding a cure for GSD would be freedom. There would be no more pain, no more living by the clock, no more going to the hospital when I get the flu and wondering if I'll walk out those doors more alive then I was when I was carried in. My life would totally change, and to be totally honest I don't know if I would know how to live, because this has been my life for the past 15 years. It's all I know.
A cure for GSD would mean everything to me, and it would totally change my life. It would be freedom.

Every Minute Counts. I keep hoping and praying for a cure, but until then I just keep on fighting.

Saturday, April 21, 2012


                                                          Here: What a place to be. We're here now, in this yellow house. We're here now, in this place that doesn't quite feel like home yet. We're here now, in this place that, after the business of the day is done, is quiet, unfamiliar. We're here now, in this place We're here now, surrounded by unfamilar sounds and smells and sights. We're here now, in this place that, as the days pass, we will call home. We're here now, walking the line between leaving and staying. We're here now, with a trailer full of boxes and a heart full of hopes.
Here: What a place to be.

Friday, April 20, 2012

7 quick takes ~ volume 5

1. It's been an exhausting last couple of days. There have been times when I've literally stopped and asked myself "How am I still functioning right now?" I am exhausted. After waking up, all I want to do is crawl back into bed and sleep. I can't think. I'm just... tired.
2. I went to the Johnny Reid concert on Tuesday. It was actually really good. I had an awful headache most of the night, but I was still able to actually enjoy the concert.
3. We're moving tomorrow. My room is mostly done (just little stuff left.) It's... wierd. I'm ready to be done moving. But it seems like even this move comes with an experation date because in 2 years or so I'll be off to college. (Seriously? only 2 more years???) I hate that first night in the new hours too, it makes me cry. ALSO, my room won't be ready until a week or so after we move in, so it looks like I'll be camping out on the floor.
4. I went to youth tonight. I hadn't been there in SO long. I didn't want to go, but it was either go to youth or help move. It was actually really good. I'm glad I went.
5. I've been having a really bad week. It goes in spurts, with a couple of weeks being super good, and I'm feeling great, and then over night everything crashes down around me and I feel bad. This was one of those bad weeks. But, despite all those bad things, there's good things too, and that was enough to keep me going.
6. Link sharing! I like sharing links. It seems like other people can say what I've been trying to say but just can't. I read this one, and it perfectly described my week.
7. I'm writing another novel. I can't tell you what it's about, other then it's the story of a girl, and her experiences with love gone wrong and love that is going right. so it's pretty much a love story. I don't know if anything is going to happen with it (Probably not, since basically it's the words floating around in my head written down on paper) but I had to write. I was going into withdrawl. I HAD to write something. So I wrote down those thoughts in my head... and that's this story.

Wednesday, April 18, 2012

Just Normal

This is that story I was telling you about that my friend Sami wrote. She gave me permission to share it. She definatly has a way with words, and she's such an amazing person. I related with so much of what she wrote here, and it's so true. So this is what Sami wrote: hope you enjoy!
For me, the hardest part about having a chronic illness has not been the days at the hospital. Not the blood draws or the needles or the blood - they've never scared me. Even the things that do scare me - the discussions about the future, the last moments before the anesthesia kicks in - they don't top the list either. The hardest part is having to be Just Normal.

A lot of you know I've spent the last eight months of life living at a college twenty-two hours away from home. I'm lucky. I can do this because I'm in remission. I could lose this at any point. A few of my friends here know what I have, who I really am. But to most, I'm Just Normal.

I always wanted to be Just Normal. I really did. The night before I was admitted to the hospital for my first set of scopes and diagnosed with Inflammatory Bowel Disease, I thought I had cancer. My parents did too, but none of us admitted it. When I woke up in recovery after my scopes the next day and found out I had IBD, I was relieved. I wasn't at risk of dying. I thought that meant I could be Just Normal.

I didn't attend Camp Oasis because that would be accepting the fact that I was different. I waited three years to join Starbright World because to become a part of this community would mean "giving in" to my illness too. I had to hit rock bottom and realize I wasn't becoming the strong, confident leader of my dreams before I could change. In late 2010, that happened. In early 2011, I did something about it. I came here and met some of the most wonderful people I've ever met who've given me confidence and a change to use my experiences as motivation to do good. I've never been happier since I've made the decision to accept the fact that I am different, that I will always have a monster inside me that wants to destroy me. And even though I will need doctors and medications to control that monster for the rest of my life, I will do everything I can to not let that monster bring me down. Even when it lands me in a hospital bed, I will not become a whiner or pity myself. I have plenty of flaws, but my disease is not one of them.

College has been one of the most rewarding experiences of my life. But sometimes I feel like I'm living a kind of Hannah Montana double life. I have the group of friends I always wanted. I have the remission I wanted. I have the support I wanted, the support that's enabling me to do some of the incredible things I've spent the last four years dreaming up. In many ways and to many people, I am Just Normal. And then there are the few who know the truth: I am not normal. That beneath the Just Normal exterior, there is a monster that could steal away my remission at any time. A part of me that knows words - that has to know words - like Mean Corpuscular Volume and Fistula and Ileocecal Junction. There are so many days I walk around campus as my happy-go-lucky self - and I realize no one around me knows who Spencer is, or would understand what it's like to watch my friends suffer. I would give away days, even weeks and months, of my remission to my friends just so I wouldn't have to watch them go through the constant pain they go through. Why am I the only person I know in remission? Why am I the lucky one? I should be happy, I know. But it makes me sad. It makes me feel guilty. My stories are about college, while yours are about a mishap with your feeding tube, and we have the same disease. There's something not right here. Sometimes, I feel really alone - and that is why I need SBW the most when I am in remission, to remind me that I am not alone.

The point is I've learned to segregate my life into two halves - a la Hannah Montana. Normal college kid who goes to parties and watches Netflix and complains about Calculus test. And sick kid who has to find friends to drive her to her blood tests at the local hospital and who takes her iPhone to the bathroom just in case there's blood in the bowl. They come together rarely - when I'm trying to raise awareness (a few of you know about super huge awesome project I'm working on right now!) or when someone is right there willing to listen who is really interested and really cares about me. But usually, I'm Collegiate Just Normal Sami and, separately, The-Girl-With-The-IBD that I was in high school.

So today my friend Lizzie freaks out because my friend Lindsey's boyfriend called her a naughty word. And other ridiculous girl drama ensues. Now, I'e had my fair share of girl drama. I can't say I always keep out of it - sometimes it's even my fault. But today was not a day I could cope with it. While all this drama was breaking out with me in the middle, I found out that my friend's Lupus spread to her kidneys. She'll have to spend this summer on chemo. I thought about another friend of mine who's struggling to find any answers, and can barely make it through the day. I Skyped with another friend who's not doing so hot at the moment either. On one hand, I don't believe it would be right for me to expect my college friends to see life from my perspective. I've experienced things I hope they never experience. They are Just Normal, at least from the chronic illness perspective, so it would be wrong for me to become angry at them because they don't understand how petty their problems are in the scheme of things. I freak about unimportant things too. We all do, even when we're in the worst situations. But sometimes I wish my Just Normal friends - and the Just Normal side of myself - could take the time sometimes to consider how thankful we should be for everything we've got going for us in our lives. I know that some of my friends with chronic illnesses won't have the same opportunities I've had and am having and will have - and that hurts me so badly inside. I can't donate away my remission, so all I can do is appreciate it the very best I can. It would be wrong of me to expect my Just Normal friends - and even the Just Normal side of me - to think "I have two working kidneys, so none of my other problems really matter!" every time we're upset about something silly. But sometimes I wish I could give them a piece of my mind and tell them what it means to REALLY struggle. To be fighting not over who said what, but to LIVE.

All in all, it's been a rough day, and I'm waiting for all the conflict to blow through. I'm very lucky to have one really wonderful friend here who comes as close as possible to understanding. I'm going to go eat chocolate now.

Monday, April 16, 2012

If you Forget Me...

In my English class, my teacher has been encouraging us to read poetry. At the beginning of every week, she posts what is called our weekly poem, which is basically just a poem for our week.
I'm finding i have a love for poetry. I'm finding i have a love for the way the words flow together and whisper the words i can't. Today's poem was called If you forget me by Pablo Neruda.
I kind of fell in love. Most weeks I'm usually like "Yes, I love that!" But this week it was more like "Yes Ms. Harnish, YES, YES, YES!!!!!!!!!!"
We're studying Love and Tragedy, since we're beginning Romeo and Juliet this week. It makes me happy. So if you're looking for a great poem to check out today (Does anybody really check out poetry when they need something to do???) then check out that one. I really loved the first bit (Ok, that would be most of it up until the last section.)

Sunday, April 15, 2012

Making Memories of Us.

Sometimes we all get together for a party...
It was Jaydon's birthday yesterday, so today we all got together for a party.
We laughed, a lot, and ate, and laughed some more, and played games, and laughed.
This is the kind of day I just want to take a picture of and carry with me forever. It's these kind of days that remind me how blessed I am.
Friends remind me that life is sweet. Life is fun. Sometimes you don't have to have an agenda

Happy 17th, Jaydon! And thank you to all my amazing friends, for reminding me that life is sweet, and for laughing, and doing life, with me. I'm beyond blessed to have you all in my life.

Thursday, April 12, 2012

There Will be a day...

Listening to: If Heaven has a Window by Kelsey Marie
Missing: Spencer

Today's a day where my heart aches in a sad way. I'm missing Spencer (Yesterday was the anniversary of his death, 4 months.) Like my friend Sami said in a post she wrote There are so many days I walk around campus as my happy-go-lucky self - and I realize no one around me knows who Spencer is, or would understand what it's like to watch my friends suffer. I would give away days, even weeks and months, of my remission to my friends just so I wouldn't have to watch them go through the constant pain they go through.
That line made my heart hurt (Actually the whole post did, maybe I'll ask her if I can post it here cause I just loved the whole thing) 

I want to curl up in a blanket in the sunshine with a cup of tea and write, and cry, and try to make sense of this twisted thing I call life. Today I'm missing Spencer. Today I'm thinking about how this isn't fair. Today I'm wishing there wasn't this monster called chronic illness, killing my friends, threatening my own life, causing so much pain.

Today my heart is aching, because it's not fair.

Also, I found this tumblr today that made my heart ache, because of the beauty, and the way it washed over this soul of mine like running water, reminding me that it's not over yet.
There will be a day with no more tears, no more pain, no more fears
there will be a day when the burdens of this place will be no more, We'll see Jesus face to face.

Today's a heart ache day, in a missing way, and in a hopeful way, and in a beautiful way. I'm going to go make myself that tea now :)

Wednesday, April 11, 2012

7 quick takes on a Wednesday

1.Today was a good day. I went to hang out with Paula (Are you seeing now that usually when I hang out with Paula, it makes a good day?) We moped together and laid in the sun together and talked and went to the park with coffee's. It was a good day.
2. I had a good phone conversation with my Manitoba cousin, Jocelyn, today. I think we talked for like an hour, and I'm kinda glad she didn't just hang up on me as I kept rambling on. But apparently I give better advice then I  thought I did.
3. So... I entered a library writing contest back in February. And, if you didn't know, I actually got second place. I know, I was totally shocked! I definatly didn't think my story was good enough to win, let alone be the second best in my age category! So, I'm getting published again, and I also get a cash prize. Can't believe I did that good, because in all honesty I thought my story wasn't that great. It was written in like 20 minutes before a school elive.

4. I've been listening to more Christian music lately, thanks to an online Christian television station for youth. I'm finding that most times I watch, something is on that I need to hear. Since I can't get the Christian radio station here at home, I find I've been listening less and less to Christian music, and I can definatly notice the difference it's making in my life now that I'm listening again. Kinda in love...

5."For I know the plans I have for you," says the Lord, "Plans to prosper you and not to harm you, to give you hope and a future." Jeremiah 29:11. I don't know why, but I'm kind of loving this verse. Usually I don't like verses (Or anything!) that is super popular or is used a lot, but this verse is one I'm really liking right now.

6. Little Miss Ivory (Paula's daughter) decided to draw me a picture today. It was a portrait of me, and of her. She's only 3, so her people weren't incredibly in depth (But what 3 year old's are?) After drawing for a bit, she looked up and made a comment about me being beautiful. Who knew God could speak truth into my life using a 3 year old? I love that girl.

7. I hope no one got tired of my rambling. I figured I haven't posted in so long, so I should update people on what's been going on in my life. This was kinda like a 7 quick takes on a Wednesday...

Sunday, April 8, 2012

Joy comes in the morning...

Weeping may endure for a night, but Joy comes in the morning. Psalms 30:5

 Today for the Easter Service, the church was decorated in lilies. The lilies were in memory of people who had died. We bought one for my Grandma... and we bought one for my friend Spencer.
It's hard to believe he's gone. It's still hard to believe I won't ever get to 'see' him again. Sometimes I think of something I want to tell him, or something I want to ask him... and then I remember.
Easter is a happy time, a time of rejoicing because My Lord has conquered the Grave. Because Jesus has beat death, I have faith that I will see Spencer again one day, and on that day he will breathe like me, no more pain. What a wonderful day that will be.
Weeping may last for a night, but Joy does come in the morning. There's joy in knowing I'll see my friend Spencer again someday, and that he'll be healthy and so full of life. There's joy in knowing that he's in a place where he's no longer in pain, no longer hurting, and that he's breathing easy.

Gone but never forgotten, love you Spence.

Thursday, April 5, 2012

Starting over

I think I'm starting over.
I've started this blog post countless times, every time leaving with either a mess of words in a draft or a blank page.
But now, with Christian music playing in my ears and hope in my heart, I feel good. I'm starting over, slowly picking up the pieces and figuring out where I'm going next. Today... I'm thankful.
I'm thankful for new life
I'm thankful for those still and quiet places that God uses to speak to my heart
I'm thankful for Spring Break!
I'm thankful tonight is a Grey's night
I'm thankful for this day, and I'm hopeful and despite being broken and stripped of everything I thought was most stable, I'm starting over.
I'm learning that the only thing that is really stable is Jesus.
I'm learning that though the storms may rage and I may be broken into a million pieces, the one thing that never fails is the unfailing love God has for me.
I'm learning that it's never too late to start over again, and sometimes you have to come to the end of yourself to be exactly where you need to be.

 But Your love, your love the only thing that matters is your love, your love is all I have to give your love is enough to light up the darkness its your love your love all i ever needed its your love
You're the hope in the morning You're the light when the night is falling You're the song when my heart is singing Its your love

lyrics from Your love by Brandon Heath