Saturday, September 09, 2006

My official faith crisis

I need to know if there truly is a SCRIPTURAL reference for the saying, "God only gives us as much as we can handle..." I can't find it and I feel like it's just a nice christian saying because I can't handle this...sure, I'll get comments now saying, "God knows you better than you do..." but, you guys, this is really hard. If God is the one who gives life and takes it, then why are we in a position as parents to decide if Noah should be on life support...don't worry, I'm not losing my faith in God, but the reality is, I am mad at Him. If I weren't to say it, I'd be lying. There is no such thing as a secret, since God knows my heart...I would hope God can handle my being angry...it's not about me, it's about Noah and God, so that's pretty jacked up!

The docs are all dumbfounded. There are no answers. Monday we will have another big powwow to figure out what the next plan of action is regarding more genetic testing, though the smartest guys in the nation have been reviewing him and have come up with nothing. His MRI pics are being sent to some guys in Europe and across the States to determine if something, somehow has been missed. The CDC still doesn't know why a bunch of mice are dead. Basically no one knows anything except that Noah is hypotonic and needs the ventilator to live. I realize this is a raw post but it's the reality, so I'm not going to blow sunshine at everyone.

There will be talk of nerve biopsies from his eye and arm along with a brain biopsy...we don't know if we'll do the brain biopsy. "What did you do today?" "Oh, I allowed surgeons to biopsy my kid's brain..." This is ridiculous you guys, parents, NO, HUMANS, should not have to make these decisions!

If and when we decide to have Noah on a trache tube, the PICU guys informed us that that means 5 days later he's sent to the regular hospital and then from there, home. Noah is NOWHERE near being able to go home.

I know there are hundreds of thousands of women around the world, every day, that watch their babies die. I feel that void. I am NOT giving up on Noah, please don't think that! I'm just in the hardest place in the world because, literally, the only one who can heal Noah is the only One. I so desperately want that to be His choice! I can have faith enough to move a mountain, but it's not a magic trick, I can't MAKE God do anything...the Bible says that if everything Jesus did were written in books, the WHOLE WORLD could not contain it...I have just as much faith as any one of those women...I know that if Noah dies, heaven is a perfect place, and he will have healing there...I just don't know why He brought him into our lives to take him away...

Well, there you have it...my official faith crisis...good night.

42 comments:

  1. Anonymous5:32 AM

    I've been lurking- and praying quite a bit for all of you.
    I can't possibly know what you are going through- but i do know that it's a good thing to be able to say that you are mad at Him. He alone can handle the magnitude of your frustration, your confusion, your rage... He alone can contain it- and if that is where you are then i praise God that you don't have to pretend to be otherwise. Thank you for sharing... thank you for honoring all of us to be able ot share in your pain, to be able to lift your precious son and family up to the throne room... thankyou for being real.
    I pray today that somehow- through the anger, the fear, the confusion- that the Holy Spirit can speak some measure of peace to your heart.
    Heather
    www.xanga.com/hippmama

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  2. Anonymous9:15 AM

    http://www.joycemeyer.org/projects/mag/july_06/maghome.php?page=battle

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  3. Anonymous9:58 AM

    Ade:

    I wish there words to say that would ease your pain or answer questions; and yet there are none. Again, I respond by saying we are here around you. those are the only words that i can give. and know that god can handle much more then anger...... so if you have to yell, then YELL>

    talk to you soon,
    Chris

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  4. Anonymous10:47 AM

    I think you are right in this. Being mad is OK. They say that a mothers love is the strongest love!!!
    I tottally belive that i belive that we can either help our child want to heal thems selfs just by our love .And i know how you feel about being mad at god, I am glad that you said that now you just have to tell god i need you know to tell me what to do please just give me the clear answer. i am continuing to pray for you all and i will say a very special prayer for you mommy today.
    All our love,Lane Brian Austin Owen pettee. of co

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  5. Anonymous12:34 PM

    Precious Adrienne - I think the verse you might be thinking of is I Cor. 10:13, but it seems to be referring to temptation rather than trials. But then maybe they're synonymous. As I read your email, so full of honest railing, I thought of King David and the Psalms throughout. Full of lament and questions and longing. The lack of true lament is the bane of our age, I believe. Caught up in superficiality, never willing to do the hard work of grieving. Thank you for baring your soul. You must know how loved you are; only the Beloved can bare their souls in open integrity. I've done my fair share. So has your mother-in-love! Standing with you, shoulder to shoulder. care of Watertown

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  6. Anonymous1:20 PM

    Dearest Adrienne,
    Through these weeks, we have all fallen in love with Noah. 'Tho we can't begin to feel the intensity of your pain, your littl guy has captured our hearts and we ache for him as we look at the pictures and have journaled his life as you've written with such frank and heart-felt words.
    Being real and honest with your feelings is not only o.k. but necessary, as He already knows our hearts anyway. We continue to pray for the answers that you are seeking for little Noah.

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  7. Anonymous1:43 PM

    This is Lynette in Tulsa, former co-worker and current friend of Tonja's. I have known of Noah's condition but did not receive the blog link from Tonja until last Friday. As soon as I received it I read every word from the beginning.

    My heart grieved with you, for you. I do not have children (yet?) so I do not know the specific challenges you are currently facing. But, I have experienced great loss, endured tremendous disappointment and questioned God's part in all of it throughout my lifetime. Through all of that, like you, I have never been tempted to cut-off all ties with God. However, that does NOT mean that I have not been pissed off at him, even TO him through my words. And it is in those times that he has met me with fierce understanding and protection. And it is also in those times that I have become accutely aware of the power of Satan.

    I have to be careful to whom I say this type of thing to because not too many people are spiritually open-minded enough to hear the true root of what I am purporting. With that being said, I think that in order to truly understand the power of God, you have to be profoundly aware of the power of Satan, BUT knowing all along that GREATER IS HE THAT IS IN YOU THAN HE THAT IS IN THE WORLD!!!!

    I can't give the answer for why God would present a gift and take it away other than that blasted free will that's floating out there that is truly a double-edged sword. It allows us the freedom to choose our path (light or dark, sometimes a mixture of both), but it also leaves negative spiritual forces some additional free rein to throw their crap around as well. I know in one post you mentioned hating Eve for eating the "apple." I completely relate to those sentiments because that's where all of the pain started.

    As far as "God won't give us more than we can handle," that truly IS a saying that the church has conjured up over the years and, quite frankly, it has caused me a lot of grief. IF that is "true" then why the HELL have I/YOU been chosen to handle such trauma? If that is "true" then MAKE ME WEAK BECAUSE I CAN'T TAKE THIS!!!

    What I know for sure, however, is regardless of whether you're strong enough to handle tons of crapola that ultimately God will win and he WILL take whatever happens and turn it around for good IF we allow him to. SO, DO NOT GIVE UP. Be angry. Be sad. Be hopeful. Yell. Cry. Scream. Love. Protect. Beg. Bless. Be. Be. Be. And know that you will be met by our blessed Jesus in every condition.

    I really hope this doesn't sound trite because God knows that is one of my pet peeves especially when I haven't been through your type of ordeal. But hopefully this helps you feel understood and supported in your honesty and REALness. God loves that and honors it - that I also know for sure.

    Taking authority of Satan in the Name of Jesus and holding up your family from afar,
    Lynette (lynisfriend@yahoo.com)

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  8. Anonymous2:33 PM

    Dearest Adrienne, Dora & Leah have been sharing your news with me & so I called my sister-in-law, Jean, Lloyd's sister, don't know if you remember her or not, about a Bible verse re' more than we can handle. She knew exactly what I was talking about. It's 1st Corinthians, Chapter 10 Verses 12 & 13. It's not as simply said as God won't give you more than we can handle, but the meaning is there. I wanted to share this with you. I pray every day for Noah, you & your family. For his recovery, for strength for you all to get through this. I hope you get better news after the doctors all meet. I remember waiting when Lloyd was in & not knowing what was going on or what was going to happen. Take care of yourself as best you can. We're all out here thinking & caring for you.
    Love, Sherry

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  9. Anonymous3:01 PM

    ADRIENNE,
    I forgot to tell you, my sister-in-law is adding Noah to her church's prayer list too. Mom Thompson

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  10. Anonymous3:11 PM

    Adrienne,
    I am crying right now as I read this post because I know that angry feeling. Robb and I often talk about how we felt so angry at God when we lost Robb's dad when we were 18, my dad when we were 24, our first unborn baby, and when Hunter was diagnosed with diabetes. Those feelings of anger are so difficult. As Christians we know our lives will be challenged but don't understand how we get dealt these types of situations. Being in the hospital with our 15 month old baby when he was diagnosed with diabetes was one of the hardest times in our lives, so many questions unanswered. I can only imagine what you are going through. Not being able to make your child well is the most difficult thing in the world. They are such precious gifts and as parents we want more than anything for them to be healthy. I feel your pain and I stand with you 100% believing in the miracle that Noah needs.
    God Bless you,
    Teresa Arnold

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  11. Anonymous7:53 PM

    Ade, I just want you to know how much I love you! Cristine

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  12. Adrienne,
    A mothers love is an incredible thing. Sometimes I think it is so strong and powerful that I am afraid of it. I want to set it aside because if you love that much then you can also hurt that much. Yet, we as moms can't help ourselves and the love just pours out uncontrollably. Can you imagine the love that God had for His son, the love He has for us? I guess we get a glimpse of that depth of love when we hold our children.
    I have spent a great portion of my day praying, pleading, begging, requesting, pouring my heart out to God for Noah's healing. I will continue to do so. Thanks for being such an awesome mom and helping me grow as a mom too. Your experience has caused me to hug my kiddos just a little tighter and tell them I love them a few more times.
    I love you my friend, Mrs. Glanzer

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  13. I can not imagine what you are feeling. I won't even try. But... I will pray for you, you and your son and your daughter and your husband.

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  14. I can not imagine what you are feeling. I won't even try. But... I will pray for you, you and your son and your daughter and your husband.

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  15. My dearest Ade,

    It would be down right frightening if you were not feeling this way! So glad to know you're normal. :-)

    Lynette's post pretty much summed up my thoughts/feelings so I won't write much. I am certainly not eloquent and my own grief, pain, confusion, and anger FOR you and the fam gets in the way of my being able to offer any great encouragement.

    You and Jason have had incredible peace when it is time to make decisions and I believe that when it is time to make another one...two...three, you will hear clearly from God. So wait on the Lord, time is not passing it is COMING!

    Galations 4:4 But when the right time came, God sent his Son, born of a woman, subject to the law.

    The right time is coming, my love.
    And when you need us, call on us, your friends are ready to surround you and lift you up!

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  16. Jason and Adrienne,
    Words aren't enough to make this seem any less worse than it actually is. All I can say is I am devestated for you and with you about this. You have all my love and support.
    Tonja

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  17. Anonymous9:57 AM

    Hi Graves family,
    This is Kelly O'Farrell of Wtn, I with Kaija and Terra. I have been keeping up with Noah on this website and want you to know you are all in my thoughts and prayers, my heart goes out to you Adrienne and Jason, I am a mother of a 3 year old myself and am not sure I would be able to handle what you are going through, I know we want to heal even the little scratches on our babies. Stay strong and know that you have a lot of people supporting your whole family.
    Kelly & Colin

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  18. Anonymous10:26 AM

    I am so sorry for all you are going through. There is nothing to say, except that we love you and your sweet baby so much, we are continuing to pray.
    Shannon

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  19. Anonymous10:43 AM

    God loves you and Noah with an everlasting love. He will never leave you nor forsake you. His grace is sufficient. All the days ordained for you were written in His book before one of them came to be. He will uphold you with His victorious right hand.

    For from Him and through Him and to Him are all things.

    Chris

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  20. Oh Ade...I'm searching for words to write but just can't find them. My constant prayers remain with you. I'm glad you're getting angry and I think God's OK with that. I think you actually told me once that's it's OK to be mad at God, even though it feels kind of funky. I didn't want to share this with you because I didn't want to take away from this blog being about Noah, but I just want to let you know that I've been having some of those same angry feelings because my brother is dying. He was diagnosed in May with an incurable brain tumor (level 4 Astrocytoma.) He's a believer, which is awesome, but I'm still a big ticked at the Big Guy for taking him from us. Because we feel so helpless, we are forced to just leave everything in God's hands. What helps me the most is to know that ALL things are possible. God can heal Billy if he wants to. He's turned water to wine, parted the seas and made believers out of the greatest skeptics. If He can do all that, He can certainly heal Noah. Forget all that crap about praying for God's will - I'm praying that Noah is healed!! (OK, so God's will isn't crap, but you know what I mean.) Love you all, Clara

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  21. I've been reading your blog for the past few weeks after stumbling across it. I remember you both from ORU and am so very, very sorry to see your family go through this pain. Patrick and I are praying for you. Praying for peace and mercy and God's grace. And wisdom for these doctors. I know you are surrounded with prayer, but I wanted you to know that someone else is praying for you too. Julie (Shaw) Marcigliano

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  22. Molly1:23 PM

    Thank you for being so real. I love you and am praying.

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  23. Anonymous1:35 PM

    My dear precious baby Noah,

    Every day you constantly remind me that life is a precious miracle from God. As I watch your Mom lay by you and pray over you I am time and time again reminded that a Mother's love for her child is a glimpse of God's love for you Noah. It is beyond our comprehension. He who brought you out of your Mother's womb is fully able to sustain you and heal you. I pray that God breathes into you His breathe of life and your miracleous healing with be a testimony to God's love and grace over your life and as you walk out your life may you proclaim to your generation God's unfailing provision and love for your life.
    I love you with all of my heart. Nana Kaija

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  24. This comment has been removed by a blog administrator.

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  25. I only found out about your family a few days ago. I wanted to hopefully encourage you. Our son (also our 2nd child with a daughter being the 1st) was born 10 weeks early and spent 5 wks in the NICU and 5 more wks on oxygen at home. I can't understand everything you are going through, but I can relate to the faith crisis as you referred to, especially during those days when we didn't know if our son would live or die. He is now 18 months old and running me around the house like you wouldn't believe. Anyway, I have been pondering this revelation for nearly a year now and thought that maybe you might like to ponder it as well. Isaiah 55:8 says, "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD." And thinking about God's ways, consider the lyrics of this Newsboys song...
    They shine like dawn on an open Psalm
    A knowing smile from something You said
    I hunger for the daily bread of Your ways
    Ah, the bread of Your ways
    They glow like blue in a field of black
    Illuminating the runway ahead
    I love to follow the angel tread of Your ways
    Ah, the tread of Your ways

    I love Your ways (Your true, Your perfect ways)
    I love Your ways (so beautiful to me)
    Lovely always (and faithful to restore)
    I love Your ways

    And when I tire, they bring a second wind
    A word in season, a gleam in Your eye
    I love to feel the runner's high of Your ways
    Ah, the high of Your ways
    I lived so long under basement floors
    The flickering lights, the windowless gloom
    I'm here to stay in the upper room of Your ways
    Ah, the room of Your ways

    I love Your ways (Your true, Your perfect ways)
    I love Your ways (so beautiful to me)
    Lovely always (and faithful to restore)
    I love Your ways

    I need Your good word speaking
    When there's nothing to say
    I need Your Spirit here
    Breathing on me every day
    Every night I need Your love's pure light
    And I've learned forever to trust
    Ever to follow
    Ever I'll praise Your everlasting ways
    (Your everlasting ways
    Your everlasting ways)

    I love Your ways (Your true, Your perfect ways)
    I love Your ways (so beautiful to me)
    Lovely always (and faithful to restore)
    I love Your ways

    I love Your ways

    It is a song and a concept that has spoken to my heart and brought me peace as I still sometimes struggle with the "why" of things in life... God bless you and your entire family. I am praying for you all.
    Jessica

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  26. Anonymous2:38 PM

    As you named him, claimed over him at his birth, unknowing what lay ahead...remember God's word that he gave to you when he gave you Noah's name. This little boy and all the decisions you may need to make regarding him are crowned in peace...and hold the battle line on this. Rest...and know the peace that PASSES ALL UNDERSTANDING is yours and will be present when you need it. He has not failed you, and He has not forsaken Noah. Love you all so much our hearts are breaking...Praying unceasingly...
    Kristi & Bryon Noem and family

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  27. Anonymous2:40 PM

    As you named him and claimed over him at his birth...unknowing what lie ahead...this little boy and all the decisions you may need to make on his behalf will be "crowned in peace". It will pass all understanding. He has not forgotten you and has not forsaken Noah. Love you so much our hearts are breaking...Praying unceasingly.

    Kristi Noem and fam

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  28. Anonymous4:24 PM

    Parents should never outlive their children or have to make the decisions that you do. I am so sorry for your pain and it's completely understandable. You are supported.
    -Cassandra
    Parker, CO

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  29. Anonymous5:22 PM

    hello friend...I'm HA alumni, heard about Noah and am praying with you guys for a miracle...we're all family. Bless you...thanks for your honest cry out to God..."He is attentive to your cries" Psalm 34:15

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  30. Ade,
    Praying and praying for you guys.

    love you,
    D, J and fam

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  31. Anonymous7:19 PM

    Adrienne- I just want you to know that my heart aches for all of you. You are in my prayers.
    Val Strande

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  32. Anonymous7:54 PM

    http://www.dayspring.com/movies/view.asp?moviename=allabout.swf

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  33. jason and adrienne-
    my mom had been keeping me posted about noah for awhile and then about a week or so ago she showed me your blog. since then i’ve been checking it everyday, anxious to see your new posts and any news about your beautiful baby boy. my entire family is praying for yours daily. i know nothing about the frustration you are experiencing, but i easily get frustrated myself when i want answers to something, even small. when i read your blogs, i want to go to the CDC myself and run tests to figure out what the heck is causing noah to be sick! (of course that makes no sense because i know nothing about medical research, but you get my point!) however, no matter the situation in life i need to trust God and remember “the God who spoke, still speaks. the God who came, still comes. he comes into our world. he comes into your world. he comes to do what you and i can’t.” when troubles come, our mighty and all knowing God is steady and ever present as always, knowing that above all else, his power and glory will be revealed. i trust and know that God’s glory will be revealed through the life of your noah. oodles of blessings and peace to you from the gaikowski’s! (kristin and kari in sioux falls and bob and pam in watertown!)

    1 Peter 4:19…trust yourself to the God who made you, for HE WILL NEVER FAIL YOU!

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  34. I haven't the words to express how I feel for you. You and your little guy have touched my heart so deeply, and your struggle is with me daily. I so enjoyed getting to know you last year, and I always enjoyed hearing what you had to say. Your faithfullness, and strength of charater, have been truly inspirational to me.

    I pray for you and Noah every day, and find myself looking at my own little ones and breaking down in tears thinking "how on Earth can this happen!?!" My little guy had major surgery when he was 2 years old, and I remember all that I felt during that time; I can begin to understand the range of emotions you must be feeling. I, and the entire Nursing Mom's Group, are praying for Noah, you, and your family.

    This scripture came to my mind from 2 Corinthians 12:9: "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

    I am thinking of you all everyday, and you are in my prayers constantly.

    -Jessica M.

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  35. Anonymous8:09 AM

    I don't always comment, but have been following your blog daily. I have to admit it is breaking my heart to see your family go through this. I think you have the right to be mad at God, I think it only shows that you are humam. I don't know if there is anything to be said to help make the choices that you face any easier. I just want you to know that I think of you and your family daily and pray for all of you. You and your family have an amazing faith and gift for passing this along to others. Although your faced with Noah's medical issues I'm sure you have helped more families at the hospital than you realize. You may not feel like it, but your strengh and faith is incredible. STAY STRONG!!
    With love,
    Deb from Watertown.

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  36. Adrienne,
    I am so sorry that your family is going through this. It's so sad. You are in my thoughts and I hoep you are doing ok.
    Erin

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  37. We pray, we cry, we laugh, we STAND!
    We love you.

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  38. I think the verse you are thinking of is actually in Luke but it refers to the he who does much, much more is asked of him line. I think its in Luke I am at work right now so I can't look it up officially. Noah is in my prayers as are you and your family. God bless you.

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  39. Lisa Sauer11:08 AM

    Adrienne and Jason,
    I've followed little Noah's blog spot since Kaija left, and you started posting things. Your family's strength and courage are amazing. But I admire your honest Adrienne! Being a mother of 3 and having lost 2 babies, I can somewhat understand your anger and frustration, and the unanswered "Why?".
    I'd like to share an e-mail I received just this morning, maybe it's just for you.
    "Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up, so you can be all that you were intended to be."
    ~Charles "Tremendous" Jones
    Even a lump of clay thrown on the potter's wheel undergoes pressure. It is the pressure of the potter's hand that coaxes the beauty out.
    You continue to stand in faith that the Potter has a plan in all this for you and your family. The fact that your faith has been a testimony to people all over the world still amazes me! Standing in faith along with you.
    Lisa

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  40. Anonymous3:50 PM

    My husband had a brain tumor and brain surgery in my 9th month of pregnancy with my oldest son. I can't tell you how many folks said those same words to me and sometimes I just wanted to punch them. Then cry.
    I'm so sorry, Adrienne, that you guys are going through this. That little Noah is hurting. That you have to stand aside and watch. As the seasons of pain/anger/confusion/understanding/thankfullness/fullness/emptiness and the like wash through all of your lives--I want to encourage you. Keep being real. Choose to move through it, not past it. We can't stuff everything away (I've tried it. It is a helpful tactic for a while, but then...ugh!)though sometimes we have to put it on the "back burner" to get through. Find those who encourage you to be in the thick of it and find the Lord there, not who tell you you'll be fine and you'll understand someday.
    I'm so sorry. So sorry.

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  41. Hi - so, sorry if someone already said this (I didn't read all the other comments) but your post hit a chord in me... I think people always use the 1st Corinthians 10:13 verse to say God will never give us more than we can handle... but -- that verse is referring to never tempting us beyond what we can bear... I think we get things beyond what we can handle all the time (at least I do)... If we could handle everything I wonder if we would need Him? I dunno - just thinking aloud. Anyhow, I will continue following your journey and praying. Press on.

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  42. I don't know the frustration of a undiagnosed problem, but I do know the trials and tribulations of having a critically ill child.

    You can consider this the 'sick-kid gospel according to Erica':

    IT IS 100% OK TO BE ANGRY (nope - caps lock key not stuck - I just really want to drive that one home).

    You don't have to be strong all the time. You'll go honest-to-God crazy and it's not healthy for you. (When Nicky first came home, I was getting at most 1.5hrs of sleep at a clip, nursing his twin sister, and pumping for him. I felt like I was losing my grip on reality and my hair was falling out in clumps.) It's OK to cry, scream, cry, rant, cry, rave, cry, thrash, cry, *itch (I think you get where I'm going here :) ). You're not hysterical - you're human. I'd be more concerned if it never 'got to you'.

    Living in a hospital is boring. It's a lot of sitting around on your butt watching cartoon reruns and learning how to tune out the incessants dings and beeps. (I, for one, have never had better looking nails in my life, between the constant handwashing and lotioning and loads of time to work with my emery board and buffer.) It's OK to say it's boring - anyone who's done more than a two-week stint as a hospital parent will agree.

    It's OK to use this time to take care of yourself, your husband and your kids. There will be times where you want to be treated 'normally' and help all of your friends just as you would've 6 months ago and there will be times where you will screen and not return phone calls from your best friend. Your true friends will understand, so long as you let them into the loop later :)

    It's OK to take help - childcare, gas cards, a takeout dinner, a load of groceries for the Ronnie house fridge, cash tucked into your purse when your head is turned. People don't really know how to help, but they want desperately to do so anyway. Just smile graciously and know that you're loved.

    I'm sure I could have more, but there's probably a character limit and my brain is fuzzy at this late (early?) hour.

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