Dear Lord,
If You did this to test me, then I believe I have failed.
Not because I have given up on my daughter.
Not because I have given up on doing what is right.
Unlike You, I will never stop doing those things.
I failed because I have given up on You as an all-powerful, all-loving God.
You are cruel. You are sadistic. You are uncaring. You are vain.
How else do You explain what we see in the world?
A test?
Your test is flawed. It tests those who do not carry love in their hearts at the expense of those who do.
How many mothers do You make cry themselves to sleep at night? How many fathers do You leave powerless to comfort their wives? How many little children, the very essence of purity, do You make suffer by chasing them with demons and dragons – those innocent children who have no weapon to defend themselves but the love of their parents? How many Brooke’s do you torment with unyielding anxiety? What did she do to deserve her fate? I may not have walked the righteous path all of my life, but that gives you no right to punish Brooke, and in turn Jess and Katie. If you have a problem with me, then you should take it out on me, not them.
I am angry at You.
I choose no longer to believe in You.
And don’t give me the “that’s the point of Faith” crap again. It’s crap and You know it. If You really cared, You would make the wicked suffer and comfort and heal to good.
You wouldn’t send the world preachers who tell the poor and the sick and the hurting that they just aren’t praying hard enough, they just aren’t giving enough, they just don’t believe enough.
Shame on You, Lord!
Maybe You did make us in Your image. That would explain why we have people like politicians and bank presidents – masters of the universe that don’t care about the poor, the needy, those in pain. Just like You, they say they care, that they want to help, but in the end, all they care about is their glory, their wealth, their fortune, their comfort.
Maybe You are deaf.
I think You just don’t care anymore.
Powerful. Brave.
Thank you.
I concur.
i’m sorry your week has been so hard. i hold you and your girls in my thoughts and hope this weekend is better.
I often wonder that…totally agree. Hugs friend xx
“I have not lost faith in God. I have moments of anger and protest. Sometimes I’ve been closer to him for that reason.” – Elie Wiesel, Holocaust survivor.
I’m angry too.
My family visited the Holocaust museum in DC last year. I was in awe of the pain and suffering inflicted on human beings by human beings. And to what end? For what greater purpose? How exactly does our suffering, your family’s suffering glory an entity that, if it exists, allows evil to roam free.
I thank you and Luau for giving us a glimpse into your world. I feel I am a better person for knowing.
Amen.
I understand … so much more than I’d like to. My beautiful young son has autism and this week he was also diagnosed with a chronic and debilitating disease. How much more should this little boy have to endure? Hugs to you and your family, Luau.
I have kept this window open after reading your blog, hoping something wise and prescient would come to mind to comfort you or contradict you. I am still drawing a blank. All I can say is we’re here for you and your family.
It takes a lot of courage to say this out loud. In reading it, I remember this anger and I feel it in my gut. It is raw pain.
Oh, Luau. This hits me at my core, probably because it resonates on a level I’d rather not acknowledge.
I’m not a religious person and I don’t want to try to meet your pain and grief with a lot of unhelpful sunshine and roses, but here’s what makes sense to me:
I think that life is hard and it’s painful – as Hobbes said, the human codition is “solitary, poor, nasty, brutish, and short.”
But I don’t think that God is what made my life hard. I think God is what helps me find people like you and Jess, so that I can make it through this nasty, brutish life.
Love to you.
couldn’t agree more, God brings me together with others to share in pain and joy. thank-you for saying this:)
Luau the pain that you are in is palpable, and I will pray that it lessens along with the burdens that you are dealing with. I just heard the news that Aidan and Conor just lost their Sunday school teacher in a tragic car accident yesterday. I am grieving for the family and for my children. How do I tell them that they lost a memeber of their Christian family? I don’t know how to do that. All I do know is to pray for guidance. You too will be added to my prayer list. It is all I can do in moments like these.
As I said to Jess this morning “Faith is being sure of what we hope for and certain of what we do not see” Heb 11:1.
In complete agreement with mom-nos. And sending you a flood of love and good thoughts to carry you through this current torrent. xoxo
This is what I believe…It’s not about you Luau… it’s not about any of us with children with autism, and/or disabilities, and/or demons. If you look at yourself, and Brooke and even God as a failure, then there is no more measuring stick,,, no more marathons to run or goals to set. God made us in his image, simply because he gave us the ability to choose. Choose to be bigger, stronger, and better than life’s battles. You love Brooke unconditionally… that is because you were made in God’s image. We all fight the anger, the frustration, the pain that our children endure… autism is a brutal disease, but don’t quit fighting…
beautiful response!
Well said.
I’m so sorry you and Jess are hurting so bad. Alas, I have no magic spell for that. If I did you’d be the first to know.
“Why My Girl?”
I’ve said it wringing my fist to the sky more times than I can count.
Maybe there is no rhyme or reason. There certainly isn’t FAIR.
God is very real. Just as much about Chaos and lunacy as S/he is about balance, peace and love.
There IS a God. I’ve seen her. We are good friends. Perhaps it’s just not the God we’ve all been raised to imagine. Everything has an equal and opposite, even God (and NO I’m not talking about the Devil). Things just aren’t black and white.
I will send good, positive, healing vibes out to you and your family. I will ask for you to have peace and understanding. Lord knows I could use some myself.
You’ve been strong for ME so many times. I can be strong for you now. No one can do it ALL the time. It’s ok to be angry. It’s ok to falter, to waiver. Just remember we are all here for you to hold you up in times like these. We’ve never met, yet there is love, compassion and understanding there. I give all mine to you now. xoxo
I agree on many, many levels and I feel your pain. I also appreciate your searing honesty. It helps to know I’m not alone with these feelings. I am thinking of you guys so often.
I think God chose us to be parents of our Angels for a reason; we are special in some way. I don’t know you in person but I know how good of a parent and person you are. Kids with autism without parents like you would be lost.
I often feel your pain. I understand you to the core. This is the hardest thing, but I also sometimes feel it’s a gift. I rather have Sophie the way she is because I see how other kids can turn out to be. We have special Angels, Luau. Hugs to you..
Dude… It is as if you crawled inside my head. I have pondered these same thoughts recently. Fortunately I do not have to live them, but I see the pain that is causes you. I know people will come down on both sides of your argument. I once suffered an emotional breakdown in Sunday School – actually shouted at someone in the class – over this very issue.
Find what makes you strong, what continues to make you fight. Never let go of that.
Yep. Having a Special kid is not easy at all. I have cursed and cried and cursed some more (specially when Sophie gets bratty only with me) But I have learned to let it go and to see things in a different way.
And yeah, I still go to church when I feel the need to feel “embraced”, I still believe in my Angels and call upon them to come and help me not lose it! LOL.. A walkies with Max or a run at the lake, all of the above give a break from the craziness 🙂
Although I have days where I dwell a bit more in the life is not fair lane, I think of my friends who lost their child before she had a chance to see her first birthday. I think of them when I feel like life is too tough and I know they would give anything to hold their baby again. I get to hug my son every night and every morning. It is very very hard dealing with ASD but those hugs and holding his warm hands are things I am thankful to God for giving me. Chin up my friend!
Dear Luau….I don’t know your story but from reading this I can tell you are very bitter and hurting. Here’s what I have learned through being bitter….#1. YOU are responsible for your own bitterness. #2. even in Christians satan can get a foothold in the door by our lack of obedience.Unforgiveness opens the door for Satan to get into your life. And he’s just not happy with his foot in the door He wants ALL the way in.
God never promised to be fair….if he was we wouldn’t depend on him.
Do you trust God with the big picture while realizing you only get a snapshot at a time? God has all the pictures laid out in front of him throughout all time.
TRUST what God is doing. FAITH sees the strong hand of God amidst the circumstances of life. God is more interested in the men and women of God we are becoming, then being some genie that we can rub for a magic trick. He will sometimes allow us to go through rough seasons to get his job done in our lives. If your security is based on something that can be taken away from you-you will constantly be on the false edge of security. God is our security.
I’m sharing this out of Love. Sometimes we don’t want to hear these things but they need to be heard. Don’t give up on God….God is good ALL THE TIME! Keep learning the Bible. All the answers are there. The more the Holy Spirit grows inside of you the more you will understand all of what I have written. It takes time…all I’m saying is GIVE IT TO GOD…thats all he wants.
God Bless you Luau,
~Sandy B.
Totally agree. Before autism, I was a “believe what you were taught to believe” kind of person. Church going, toting older 4 nt girls with me. That all changed when autism blindsided us with our youngest daughter. I don’t buy the “you were chosen for a reason” b.s. There is no way a God would ever allow such suffering of anyone, be it cancer, autism etc. Even if I continued to believe, I don’t think autism was given to our family via God, it was via the pharmaceutical industry. If there was a God that was all loving and performing of miracles, he could wipe it all out and end the suffering.
Luau, you put into words my exact sentiments. Thank you for your courage to say it out loud. I for one, stand alongside you shaking my fist at the sky. XO
this is the post that i’ve always wanted to post, but never had the guts to put up. i think the world of you for saying this, and saying it so well.
I think it would be easy to offer generic platitudes here, none if which would help. I can only speak to my experience as someone on the other side if this – someone about whom others asked God this question. I am who am am as a direct result of a series of circumstances out of my control – circumstances I would never have chosen, but which have made me a stronger person – and have allowed me to influence the lives of others in a positive way. She’s going to do great things, my friend. Whether directly, or through influence on others, we can’t know now. Just think of the lives of the people you and your wife have already touched, through your circumstances. I hope one day you can look back on this time and see the purpose God had in mind, but until then, please know that you and your family are doing great things, every day, and are appreciated.
hang in there mate, one step at a time, one foot in front of the other, don’t stop, they need you! cheers, paul
But I got nothing
No magic words
To stop your leaving
To end this hurt
I’m just blank
I’m staring into space
Praying please please let me think of something
‘Cause I got nothing
Luau I’m thinking of you and your family. I just wish I had words to heal the hurt.
Hi Luau.
I’m not gonna say I understand how you feel because I don’t. No one can, except for you. What I do know is you have feelings and those feelings are justified. Its ok to be angry at God and question Him. Please know that I am praying for you and for peace to surround you.
What’s up with this Luau!?! 🙂 I haven’t seen you in person in a long while, but I know some of what’s going on in your life by “seeing” you on FB… The person I remember you to be and know you are is absolutely undefeatable! When we were young (ok – youngER), it was easy to be undefeatable because life hadn’t thrown us all those really fun curve balls… But, you’ve been undefeatable when it’s been so much easier to be defeated. Personally, I think you’re totally amazing! I see that you and your lovely wife have done all this incredible stuff to help others. You’ve taken on this marathon thing which is crazy!! Even your post is so selfless! Your heart has always totally been in the right place, Luau… If I were a believer, I would believe that God threw you this challenge so that you could see all the wonderful things about yourself! I’m 100% certain that you will overcome these feelings, and find yourself feeling joyful again soon! Sending you all a bunch of love… xo Pam
Just….WOW.
Father to Father, I understand, but please don’t give up on God. I know the hurt, believe me I know and there have been times I could have said word for word what you did, but allow Him to comfort you in this time and give you His strength. I’ll be praying for you
I will pray for you even more while you can’t. (((Luau))) gail
Listening to Paul Gilmartin’s Mentalpod this evening he read a letter from a listener about horrible things which happened to this young man at the hands of adults whom should have none better. He closed the letter by saying that if he ever could ask God one question it would be “what did you mother ever do to make you an asshole?”
If God truly exists and had no beginning or end then I seen our existence on this rock as meaningless. We are nothing more than trifling toys of which this spoiled brat of a being has grown tired. Rather than giving glory or lifting praise to some thing that I have to hope loves me and cares for me in spite of all evidence to the contrary, I seek my own joy. It is one reason why I run.
I can only say, I’m sorry we’re all in such pain right now–especially you and Jess–but I ache for us all.
Love you,
Mom
I cannot justly put into words my appreciation for your comments – from those that seem to be in the same space as me to those who have been here and moved back to a place of belief to those that live in that house of God still. Your support has tremendous strength and for that I am grateful.
Thank you, thank you, thank you.
Here’s another (((((Luau))))).
Luau. I love you. And that IS God. You know that I am not a RELIGIOUS person. But I am a man of deep faith. I have studied all of the great spiritual books from the i Ching to the Bhagavad Gita, The Bible to the Koran. I consider myself a Christian. But I also consider myself a Daoist, a Pagan, and even a little bit of Buddhist and definitely a heathen. But the one thing I have found in all of my studies and searching for the truth is that there is a common thread throughout ALL religions and faiths, and that is LOVE. It is my understanding that God IS love. As long as you have love in your life you have God and God has you. Period. God is NOT a diety or an entity, but God is like a gracious, loving father. You can put all of your hopes and dreams and all of your pain and suffering on God, for it is not yours to own and to carry with you for it weighs too much. Let it go. Give it to God and jump in the river. God did make us in his image so that we could turn to love when we are in our darkest moments and know that we are not alone. You have Jess, and Katie and Brooke. But you also have the rest of your family, the autism community, the running community, the dailymile community, your blog followers, Jess’ blog followers, Lex and I, the Jeremy’s, Adam, Sarah… I’m sure I could go on. But I’m sure your realize that’s an awful lot of love you’ve got there, and therefore an awful lot of God. God is all around you, you just have to open yourself up to accept God’s help when you’re hurting. Which is sometimes the hardest thing to do…
Hey Luau,
I was very sincerely touched that you reached out to ask how we are doing a couple of weeks ago. I didn’t respond until now because there’s too much to say and so few words to describe these experiences. I did read your post re: not believing in God anymore. I was brought up Christian but that label did not fit me, so I started practicing Buddhism and that helped me put my world view into a much more manageable perspective. I still don’t like labels but this one is the only one I can think of to describe my relationship to that-which-is-universal. You see, we as parents, from the Buddhist perspective, have come into this lifetime with a certain karma. Our girls did too. Like yours, my daughter has this “incurable” neurological “disability.” But let me tell you something, I know that my daughter is a million times “smarter” than I. I know that she is my child to teach me how to love unconditionally and to accept her as she is. I may not at all times be able to communicate the way I have learned how to in the world but I do know that my thoughts and non-verbal communications can affect her much more than language ever could. At four years eight months, she still does not speak. That scares the shit out of me, but I know know in my heart of hearts, she will when she is ready. I know she will be all the things in her life that she is supposed to be. I know that she will have a fulfilling, meaningful and happy existence not because God does or doesn’t have anything to do with it but because I am attuning these thought patterns into her subconsciousness every minute I can think about it and she feels this on a fundamental level. Your children do too, and so did you when you were a child and still carry your parents’ thought-vibrations with you as an adult. We all do. These so-called autistic children have gifts that we have not yet been able to recognize and I need you to believe this. I just KNOW it. Not because the religions, or schools or medical tests can prove or disprove this. It just is.
Clearly, I can relate to your pain from first-hand experience. As a child, I suffered a lot and wondered why God allowed it until one day (as a helpless child), I decided to control my fate by willing with my own mind what I wanted to happen (because I knew if I didn’t, someone was planning to kill me and other children, actually). From that moment and many others that followed, I realized that I could use my mind to change the course that I was on (they recognize this as quantum physics now). There’s a lot more to say but I will keep this post “short” this time because I think I made my point.
Our children carry a change in their DNA. We see it as “bad” but it isn’t. I believe every autistic child is super developed in certain areas, light years ahead of us. We, as parents have to will ourselves to find those gifts in them and nurture them, all the while nurturing ourselves. You have running (I run too but not nearly enough), and this is a positive way of dealing with the enormous responsibilities we face but we can do it. Similarly, by telling ourselves we can go farther, faster and longer than our personal best, we need to apply the same with our relationships with our families. No other option here. It’s our karmic duty to them.
Finally, Luau, this is the most important piece of encouragement I can offer: in the book Navigating the Collapse of Time, A Peaceful Path Through the End of Illusions, David Ian Cowan states that the Ho’oponopono Hawaiians sat in a circle whenever a member o the community experienced misfortune (p.145). While silently reflecting over what they may have done to contribute to this individual’s misfortune, they asked for her forgiveness and one by one, until everyone had left the circle, the person in the middle became healed. You are, like myself, a Capricorn and by nature have tendencies toward rigidity which cause problems like rheumatism in our knees (while running actually eventually strengthens them, if done correctly and consistently which has not been the recent case for me so of course they hurt this very minute). We have trouble in expressing our emotions, especially love and vulnerability so I found this very helpful. Having to summarize the jist of it, we need to think of our girls in our mind’s eye and repeat this: “i love you”, “I am sorry,” “please forgive me” and “thank you.” A certain Dr. Len did this when he worked with inmates of a criminal insane asylum. As he focused his thoughts (by saying the four phrases above) on each inmate, one at a time, they began getting well and eventually the ward shut down as they were all released. The power of YOUR mind is just as amazing! If there is a God, it gave you which you can do all by yourself!! damnit (interjection added for ironic emphasis).
These beautiful children will certain respond to us on a fundamental level if we direct our thoughts in this way.
That is all for tonight and I hope you don’t mind if I cut and paste this to my blog and that I am too tired to proofread! Thank you!
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