That word comes to mind all too frequently lately.
Why.
Why can’t my life be as I want it to be. Why is it MY dad.
Why does ALS exist. Why does it hurt so much.
How.
How can this be fair…
In the overwhelming moments of despair that I have felt this
holiday season these are just a few of the things that have been on my mind.
Now, I know the answer to most of these questions. But in
the moment all that is felt is confusion, sadness and anger. The last thought
to occur is one of understanding.
I am realizing more and more that there is a time to be sad.
There is a time to be angry and confused. But most importantly when that time
comes, take advantage of it.
Our culture all too often places shame upon those who dare
to be vulnerable. There is a stigmatization that to be vulnerable = weakness. I
for one have held way too tightly upon this stigma. Growing into an adult with
a terminally sick parent I have pieced together ways to keep it all from
reaching me….
Don’t talk about it.
Don’t cry in front of anyone.
Don’t show the pain.
Ignore it.
Out of sight out of mind.
But through each excuse, each justification I am humbled.
I am shown that maybe hiding it all is a form adaptation.
That maybe ignoring it doesn’t mean that I’m not hurting. That crying in front
of someone is more comforting than crying alone. That not talking about it is
keeping me from community with the body of Christ. That hiding the pain makes
me seem heartless, and that there is something beautiful about a person willing
to admit their brokenness and need for a savior.
So I guess the biggest and greatest lesson I’ve learned in
2014 is this:
“Don’t be afraid to be vulnerable”
For the first time in my life I have realized my need for a savior. My need for someone
to take all my pain, my sadness, my hurt, my anger and have all control. My
need for a savior allows me to be free.
But so many times I find myself not allowing me to be free.
I continuously try to change my life, my circumstances, but each and every time
I fail. And with every failure I become more discouraged. But the beauty of the
cross tells me to take refuge in Jesus. If I can gather the courage to do this
then just maybe I will be changed. Maybe I won’t be as cold, or arrogant… Maybe
I’ll be humbled for once. Maybe I’ll discover my sin for the first time. Maybe
I’ll realize that I am such a fool without Grace.
Just maybe Christ will change my heart.
And just maybe, I’ll rediscover what unbridled joy is.
So yet again, here is another late night rambling...
I tend to have nights where there is so much I am thinking about that I just need to express it all or I might explode... And when that happens; I write.
I finished my sophomore year of college in the beginning of May. I was more than enthusiastic to come home, and see my family. (For sophomore year was the most difficult year I've had to date). So as I came home, I was very emotionally spent. But I came home to discover that the waiver providing funding for the home health care for my father was being revoked. 2 years ago when my dad came home from the hospital after being placed on a ventilator we were placed on a financial waiver that provided the funding for all of dad's care.
Within the last 6 months the government has come to the conclusion that we have no reason to be on the waiver for the waiver is income based, and not based upon needs. We currently make too much money to be on the waiver. The government notified us that we would be required to pay more than $24,000.00 annually for my father's care out of pocket, and we would be taken off the waiver.
My mother went to court, and needless to say, we lost. This could result in our having to possibly declare bankruptcy and other possible outcomes.
Instantly when I heard we were being taken off the waiver I was angry, confused, and depressed. What would happen to my daddy? What would happen the family? .... The only thing I knew was that God would provide
And so he HAS!
As soon as we received our verdict we set up a donation site in order for us to raise funds to keep my daddy at home and taken care of. Within 6 days we had raised $13,016.00 for the care for my dad... And this isn't even the best part yet...
-----------------------------------------------
Maybe you've noticed a little thing floating around in the social media world known as the... ALS Ice Bucket Challenge?
I know for myself it took me a couple days to finally check it out. When I did, I discovered that Martha Stewart had poured a bucket of ice water over her head to raise awareness for the disease ALS... As did Jimmy Fallon, and Justin Timberlake and countless other professional athletes and celebrities. I decided to start my own and nominate some of the closest people to me.
Within 5 days, my facebook newsfeed was FULL of the #ALSIceBucketChallenge.
What is the ALS Ice Bucket Challenge?
The Ice Bucket Challenge is when a person dumps a bucket of ice water over their head to raise awareness for ALS, otherwise known as Lou Gerigs Disease. Then, the person nominates atleast 3 people to do the same within 24 hours or they are required to donate $100 to the ALS Association.
------------------------------------------------
For 6 years now I have struggled with the frustration of no one caring or knowing anything about ALS. Everything on tv, and in the papers, and on the internet was all for awareness of cancer. Please do not think that I do not find cancer serious, or unworthy of support or donations. I however have found it difficult that there are many many diseases that pass unknown, that are in HUGE need of funding for research. ALS has no known cause, or cure. Funding for research, and even awareness could change that.
Over the last 6 days I have watched a dream of mine slowly turn into reality. People finally know that ALS exists, & know what it is! Thanks to the Ice Bucket Challenge, the ALSA has received 5 times the amount of donations than they had at this point last year. And thanks to the Ice Bucket Challenge my family personally has received MANY donations for which we couldn't be more thankful.
The whole point of this one big rambling is this; GOD PROVIDES
On Friday evening we had a close friend of the family contact my mother. He wanted to invite dear friends to do a huge ALS ice bucket challenge in honor of my dad. So, he made a facebook event and we spread the word as quickly as possible. In 2 days we had 100 or so people show up to dump freezing ice water over their heads all in support of my daddy. The local newspaper came by, as well as the local news station to do segments on our story.
God has not only continued to provide the funds for my daddy's care, but he has provided beauty within every painful obstacle that ALS has thrown our way.
The view of 100 people we knew well, and even strangers made more of an impact than ever imagined. We are loved. We are loved by an incredible God, and are richly blessed.
I'd like to say we are overcoming ALS... Everyday is a struggle, but everyday Christ is renewing our strength. Everyday it's hard to wake up and watch a loved one succumb to a terrible disease such as ALS, but everyday God provides moments that remind us that it is all for his good. And although ALS has no cure, yet... We are living as though a cure isn't important. My daddy will one day speak, eat, breathe, laugh, and walk again. Wether that be here or in heaven, he will one day be restored, and that's enough for me.
2 Corinthian 4:17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
The many people who came to show support today for the ALSIceBucketChallenge
I spent the majority of the evening perusing old journals that belong to my dad. There were many moments he wrote of that I had forgotten, some that I never knew about but all were from his point of view. My father hasn't been capable of speaking to me since Sophomore year of high school. These journals have now blessed me with a way to hear my father's voice ever so silently, for the first time in almost 4 years. ALS continues to consume his body and rob him of his life. Still, we somehow continue to praise the Lord and enjoy each moment as it comes. Every smile brought to his face is worth the many, eye wipings, changing of his gowns, & tucking his feet in... My heart is broken daily, but some how as I sleep each night it is renewed.
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. - 1 Peter 5:10
When the very thought that dad can't control any part of himself but his mind begins to sink in, I grasp onto Jesus. I grasp onto him as if I am drowning and am struggling to find my next breath. I know it hurts my dad, and it hurts us almost as much, watching him deteriorate... But I have hope. My hope is found in Jesus Christ. Though I have no clue why my daddy is sick, I know that God has a plan. He knows my heart, he knows my dad's heart, he knows them more intimately than even we do.
You have searched me, Lord, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. -Psalm 139:1&2
I can hardly wrap my mind around that! This small trial in the time frame of life is leading up to something remarkable... For God is for us and not against, he is using ALS for his glory! That may be hard to imagine, but everything works together for the good of God. ALS has changed my life. Sometimes for the better and others for the worse. I don't wander around hopeless and terrified of the future, but instead I have learned to praise Christ for these present sufferings! I cherish and value life so much more, I know my family more intimately than I ever thought I would, and most importantly I cling to Lord of the universe because of it. I may have lost a lot due to ALS, but I believe I have gained so much more.
As far as I am concerned, we've beat ALS. We may not have found a cure, or effective treatments... But through Christ everything has been conquered. Through Christ we have the ability to live life outside of ourselves, allowing us freedom. For Christ died to save us from ourselves, so that we may have life. We fully deserve the consequences of our evilness, and yet Jesus loved us so remarkably much that he couldn't bear to see our pain. He paid the price so that we may have joy and life once again.
I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. -John 16:33
How ironic it seems that through a terrible, ravaging, terminal disease that we have found life, strength, & Grace.
