Wednesday, August 13, 2008

Disappointment with God

Holly is Daddy's girl.

Holly and Bella enjoying the great outdoors
Joseph has discovered online shopping!

Bella and Joseph, overjoyed to see each other
Aunt Sarah-Jane and Nana playing beauty shop with Holly

These are some picture from our weekend with Bella and my very dear and sweet sis, Sarah-Jane. As you can see, Holly loved having a girl to play with and I think it was a good distraction from all that is going on with Joseph (and I loved having my sister there with me). Allen had a night away with his Dad and brothers to a lakehouse, where they enjoyed boating and fishing. We were all very glad to have him home since Joseph had a rough weekend.

Right now Joseph is in much better spirits and his usual smile is back on his face much more often. I don't know if it was tiredness or just not feeling good, but this weekend he was very grumpy and clingy and just physically not doing well. He didn't leave my side for more than a few seconds at a time, until Daddy came home. Then he was happy again and left for Target with him with no problems leaving me. Go figure! I think his turn in mood resulted from a very good nap on Sunday, just starting to feel better overall, and excitement at Daddy being home.

He is still taking steroids, although we are trying for a third time to wean him off....very slowly.

Joseph is continuing to press on, trying to run and play, but then getting discouraged when he realizes he is way off balance and really needs a hand to hold in order to stay up. While it is encouraging to see he desires to play, it is very painful to not be able to make it all better for him. To watch him watch others play and do the things he used to be able to do with ease is torture.

Someone recently asked me, "Do you feel like you are sitting on a ticking time bomb?" My thought was, "No, it feels like someone is slowly ripping me apart." I hope that isn't too graphic, but I can think of no other way to adequately describe it.

We waffle between hope and despair almost hourly, depending on Joseph's symptoms and mood. I want to hope, hope, hope that Avastin works or that God steps in to save the day miraculously, but then sometimes it just seems impossible.

Aunt Sarah-Jane read to us from our "Read Aloud Bible Stories" book at dinner the other night. The story was about Jesus healing the blind and making lame people walk. Joseph was listening so intently and soaking up the hope that was in those stories. I thought to myself that I often put so much hope in a new drug or the right treatment, when for God it would be so easy to say, "Be healed." Why he does for some people and doesn't for others is a painful mystery.

I admit as I've gotten older I have become more cynical and skeptical than I'd like to admit. It is so hard to see such pain, evil, and disappointment and believe in a good God. A friend of mine gave me the book "Disappointment with God" (by Philip Yancey) about a year before we found out about Joseph's tumor. I found the book so respectful and sensitive to questioning people, and the best part was that he didn't have all the answers. But I loved the way he searched the scriptures and the heart of God to try to make sense of the evil and suffering we experience.

One of the questions in the book was "Why didn't Jesus heal ALL the people he encountered?" I believe he referenced a story where Jesus healed a man at a pool, but didn't heal all the rest. How could he single out that one man and not have compassion on all the men/women? Well, that got me thinking, "Yeah, why not?" Yancey notes that God is always more concerned with our spiritual healing than our physical healing. In the Old Testament he gave many signs and wonders and miracles and it still didn't produce the faith and belief he desired. In the end we will all die, and at that point it won't matter how healthy our bodies are but whether we have responded in faith to the love of Jesus.

I am definitely not doing justice to this wonderful book, and am probably butchering the examples, so I would recommend just reading it.

I am sorry this entry is so "all over the place" but I have to write everything in the small time slots I have where I am not there you have it. Thanks for listening. Thanks for praying and walking this journey with us.


Anonymous said...

Thank you Gillian for your honesty and willingness to share with everyone reading your struggles, your questions, your pain and your hope. That book has meant so much to me over the years and I refer to it a lot. I am right there with you with all my questions and wanting to know "Why"!
I'm praying for peace in your hearts and that the tender mercy of Jesus will surround you all as you go about this day, trusting that you will know in your heart how much you are loved by Jesus. Love, Mimi

susan and brian said...

Our hearts ache for you

Anonymous said...

I am planning on buying the book today. Gillian, your posts are always so exquisite for me to read. I have grown to truly love you and your family and feel sorrow for the tough times and feel joyful for you all during the happy times. Chris, the boys and I are praying and thinking of you all constantly.
Your sister in Christ
Randi Booth

antonia said...

We continue to pray for you throughout the day (and sometimes night!) here in Texas. Thank you for being so transparent...

~The Cobble's

Jody (atlanta) said...

There you go again Gill....bringing tears to my eyes. I want to get in the car and just BE THERE FOR YOU...however you and Allen need. Thanks so much for your honesty in sharing your struggles, doubts, and true hour by hour emotions. I need to check out that book since admit I am 'disappointed & struggling' with God and seeing you, Joe and your whole family go through this. I feel so grateful for all the blessings in my life and am 'mad, sad, frustrated' that my good friend and her little boy going through this horrible pain. I keep praying and hoping for better times and miracle, but admit I am asking WHY lots.....thanks for your candor.

As I told you yesterday on the phone Abigail really does ask about Joseph and when you coming home to play and make a mess. We pray for you nightly.

thanks for posting. We MISS YOU AND LOVE YOU!!!

LOVE THE PICTURES!!! I will be seeing Margaret/Laurie and the kids in a couple hours. We are keeping our Wed routine that we started with you and your little all are especially with us in our hearts during out weekly playdates.


Sarah Partain said...

Allen and Gillian, I asked that same question as Amos was about to have his first surgery done for the first shunt. We had legions of people praying for us and I could not figure out why God had not healed Amos, sparing us from going through two brain surgeries. I came to the same conclusion you have and saw that God was working in our hearts, helping and challenging us to trust him with our baby. It was so hard to see him in pain, to watch his little head grow and to think about the future and its uncertainty. But God gave us strength and comfort through our community and family, and also supernaturally, to get through it. He has given us every ounce of strength and every bit of health that we've had thus far.
And I realize we have a different situation from you all; I just know those hard feelings, especially when it involves our children. We are praying for you all. God is doing something and I pray that you (and all of us) are able to see that and be comforted by that, even in the toughest moments.

Sarah-Jane said...

ahhhh gill, thanks for writing. I feel terrible because I think I stole that book from you when I was there. I feel disappointed in God all the time through this situation, and that is because He isn't doing everything the way I want Him to. When, I saw that book I just grabbed it hoping for comfort. You said it was good...and I took it...woops.
i love all thepics, and despite the hard weekend, we are so glad we were there.
I miss my Lolly:)

Margaret said...

I have to just second Jody's post on all points. I wish so much we could just ease your burden for a few minutes at the very least. Unfortunately it seems that just as love knows no bounds, neither does pain. What we love the most also has the ability to hurt us the most. The depths of our pain through this only tells me how much we love you guys.
There is so little any of us can do but know we send you our love and prayers.

WY Gramma said...

I read your blog regularly and pray for all of you daily. This Grandma's heart breaks for you and for Joe. May you feel the presence of God in this difficult time.

Anna Tester said...

Gillian, look at you sweet friend, showing all of us how to walk in this with you.

I wish, as all of us do, that we could bear this for you for even a second, or counsel or encourage you; but instead you counsel encourage and show us how to walk in this with you. It is so true as I shed tears and cry out for you that in the same moments I also watch with jealous eyes at the love and the savoring of the moment that you and those closest to you have.

Anyway, I don't understand it either but just wanted to tell you (very poorly I am afraid) that we love you and are praying.



Kate Etue said...

Still praying for you guys.


John and Sue Burch said...

Allen and Gillian - just want you to know that I have asked the women on our team to be in prayer for Joseph and your family. We have a Day of Prayer set aside on Friday, so the needs you have mentioned will be taken to the Throne!!! Thanks for sharing your journey with us. Praying always! Sue

Mel said...

It is so rich to read how God is drawing you closer to Himself as you wrestle with trusting who He says He is and not how you feel. What a gift to all of us who will believe and experience the same.
Praying for you,
Mel, Steve, and family

Anonymous said...

Thanks Gillian for sharing your heart. We are praying for Joseph every day on our way to school (to Mimi's class!). May you all feel HELD by Him today.

That online shopping looks dangerous, BTW--Joe P doesn't know the credit card numbers yet, does he? I'm sure there are lots more cars and trains on the internet!

Alison Fontenot

kelly Robinson said...

What a gift of a post. So honest. As I prayed for Joseph last week, we were back in ICU with our 7 month old son who had heart surgery in June. Thankfully, he's doing well but while we were there a young man passed away. I was so overcome with grief for his family and so many questions for God. I have received no answers and just hope that all of us who struggle to hope and believe in the midst of such unbearable suffering will be given peace and comfort. You are brave to endure, strong to believe and blessed to hope. My prayer for you this night is that God reveal miraculous grace and mercy, and please Jesus heal Joseph. please.

tracey said...

hi gillian - thanks for sharing and trying to explain to us what this is like for you. I can't imagine. And, I get frustrated that God hasn't given you more good news on this journey. I don't understand...maybe I should read your book too. We think of Joseph often and I still pray for a miracle every day.
love from Atlanta...Tracey

Anonymous said...

Thank you for sharing your heart with us! You are in our thoughts and prayers everyday. I wish your "why's" could be easily answered, but only He can answer them in His time! Joe is on my kids prayer list every night!
- Carey Heid (sj friend)

Anonymous said...

Gillian and Allen, thank you for the great pictures and sharing your heart. Gillian, you have no reason at all to apologize for being "all over the place" in what you shared. You will never know how much your words have touched our family.

Lamentations 3:22-24 (The Message)
"God's loyal love couldn't have run out,
his merciful love couldn't have dried up.
They're created new every morning.
How great your faithfulness!
I'm sticking with God (I say it over and over).
He's all I've got left."

vann & norma

Anonymous said...

I've been keeping up with you guys on the blog. Not sure if you remember me, Gillian, but I worked with the college group when you & sarah-jane were a part at CCC. I just wanted to let you know that your vulnerability & honesty are such a blessing to me. May you feel God's sustaining power in every minute of this. I have no words really. I just ache for your little boy, for you & your family.... and I'm bringing my 'groaning' before our God to hold you all up. Oh, my maiden name was 'Adcock'.... you knew me as Mary Adcock. May God's arms wrap around you right now in a way you've never known before.

So Blessed said...

Praying for all of you...

Dee Dee said...
This comment has been removed by the author.
Dee Dee said...

Praying for you both as you grapple with such hard questions. It brings to mind our Saviour struggling in Gethsemane. I have no idea what all He poured out as He knelt there, for little of it is recorded, and He probably spent a long time there. But He sweated tears as He grappled with hard things. He understands, even though we all, so painfully, don't.
And praying for dear, dear Joseph.

Anonymous said...

What an amazing gift from God to see Him in the midst of your struggle. He has not and will not leave you without hope. Thanks for taking the time to write out all that your processing in your head. You challenge and encourage each of us as we pray with you on this journey. We sure love you guys!

Journada said...

Gillian, Allen, Joseph, and Holly--

We continue our daily prayer for you. We talk with Salem about you and ask her if she wants to pray for you each night. She can't exactly say yes (she doesn't speak much yet), but she always returns with a high-pitched "Huh" sound, which means, ABSOLUTELY! We grieve that you are walking such a difficult journey and keep praying with all our hearts. Thank you for writing this post so beautifully.

keely, josh & salem

Courtney said...
This comment has been removed by the author.
Courtney said...

Again, I am astounded and completely encouraged by your honesty through this great struggle in your life. I wish I could wave a magic wand and make everything better for you all. Like you reminded me, that's not what God wants. He wants our hearts, minds, and everything in us. I wonder why God is putting you all through this. I want to say to God, "You already have the hearts of Allen and Gillian, so why are you doing this?!" I guess that's one of the questions that will go unanswered for now. I have to believe that God is using this somehow to bring someone to himself. I just wish it weren't happening this way.

I love you guys even though I'm really only a mutual friends. I love Jennifer; therefore, I love you all.

-Courtney S.

Anonymous said...

Your honesty must cost you and yet I hope it helps somehow, too-the saying of it. Somehow, God knows every centimeter of Joseph's angry cells, every layer of your hurt and anger and sorrow, every bit of lost and found hope. Our work is to be mommies, to ache for our children, to pray healing for their wounds, to keep the family waking and sleeping-and as small as it is in the scheme of Creation, it is all we can see each moment, and it is crushing and hard. The only hope we have is that we can go nowhere but God. Somehow He is redeeming all things. I am so sorry that you would ever have to see Joseph hurt. I am so glad you have Joseph, and that Holly loves him, and that they carry on in their conversations. I am so glad you and Allen have each other. We pray for you every day.
With hope for strength,
anna & shane caudill

Anonymous said...

Your honesty dumbfounds me. You are in our thoughts all the time. We love you all. We love Joseph and Holly , just wish we were nearer to you, distance is such a huge barrier.
love Ann ben & the boys

Chloe said...

Gill, every day I am hoping for the miracle that you pray for.

I love the pics, esp the beauty parlour scene and the online shopping - a man after my own heart. Loving the hair too Joe P, looking good.

It has been a long road with no known destination. While you feel helpless, frightened and that you are being torn apart, I know already that your hearts are richer, albeit heavier, by all that you have experienced. It's not a journey anyone would wish to go on, but you have travelled it with wisdom, sensitivity, love and dignity.

Thinking of you all.
Love Chloe

Kelly and Evan said...

Your family is in my prayers daily. And, I check on your blog all the time. I continue to be so blessed and enriched by the way you express everything so openly. This most recent post shows exactly why we must have faith. We have to trust in God, and know that there are so many times that what happens in this world does not make sense to us. This blog continues to challenge and deepen my faith. Thank you for this witness of true Christianity...not easy at all, not perfect, but honest, transparent, and completely reliant on Christ. Saying to God, this body does not belong to me, but everything belongs to you, God. I pray that Joseph will have a good day and that he will be able to be weaned off the steroids.
Lifting you up in prayer,
Kelly Lathem

Anonymous said...

Thank you for your honesty and openness to all these emotions and situations with sweet Joseph~It is hard to question the Lord on such big things sometimes because it exposes our lake of trust/faith and yet it is so comforting to have a God that desires us to ask and draw near to Him as the questions are asked. Christianity is amazing~We are praying for you all! Love, Brubakers

Lynn T said...

Gill and Allen,
My heart is with you all tonight. I just got off the phone with Nana and Holly told me goodnight a few times. .. she asked for Will each time! Thanks for sharing your heart so beautifully. The photos are amazing. I love you all so so much. Love

Claire said...

I too have struggled with this issue and appreciate you sharing your insight. Your family has been in my thoughts and prayers since meeting you at the Rally lunch at McDougal's. I pray that Joseph will receive a miraculous healing here on earth and that God will continue to be glorified. Thank you for sharing Joseph's story with us, and thank you for allowing us to share his story!

Love and prayers,
Claire Olson
Rally Kid Coordinator

Sarah-Jane said...

love you peabody's. hope tonight is restful for all of you and that Joseph has some smiles and good Target trips tomorrow.
miss you all

Sarah-Jane said...

p.s. I"m so glad you took that typing thing off:)

Nana said...

I was listening to Michael Cards song "the New Jerusalem" which is so beautiful and is written from the book of revelation verse 4 says " And God will wipe away every tear from their eyes;there shall be no more death,nor sorrow,nor crying;and there shall be no more pain,for the former things have passed away,"Gillian and I watched the Chapmans interview on Larry King last night(Ihad it taped)Steven said when you look at a mural close up and hold it close to your eyes it is hard to make out what it is and its not until you stand back and look at it from a distance that you see the true picture.I think when we are in the middle of such pain that it is impossible for us humanly to see the big picture.That is not to say while we are going through this huge trial that we should feel ok.we just ache (as Anna and Shane Caudill said) and as Mommies we do not want our children to be in any discomfort at all.Tonight I do thank God for everyday Joseph smiles and I know Joseph knows he is loved so much.He is an absolute trooper and he never complains,which is a miracle!!We are still pleading with the Lord for a miracle and for the Avaston to work.I was talking to "Sir Toppin Hat" tonight Joe.P. and he said he is going to hide another train tomorrow and we will have to search for it!!!Goodnight God bless and sleep sound in Jesus.Love from Nana Grandad and Davey.Hebrews11;1 "Now faith is being sure of what we hope for and certain of what we do not see"

Ruthanne (Mayfield) Szenasi said...

Don't even know what to say...I can relate so much to your disappointment. I found some comfort in your brief explanation about what the book said...that God is less concerned with our physical healing than our spiritual healing. He just has an entirely different perspective than we do. He is also well acquainted with our grief. He actually GAVE UP His only Son for us. Willingly. And it wasn't because He didn't love Him. Or that He was heartless. I am wrestling with these truths today, Gill. I just want you to know that I am praying for you guys today and always. I love you, girl!

Anonymous said...

Hi Gillian-
Just wanted to let you guys know that even though I haven't made a comment in awhile, I am still keeping up with reading and we are still praying for Joseph and all of you.
Katy Tubesing

Anonymous said...

Gillian and Allen

The pictures were so precious of all the children! Your writings, Gillian, are truly amazing--so honest- and my heart just breaks for you all as you go through this.
I sure understand your pain,doubts,fears,etc!! As your mother said in her note that while we are in the midst of our sorrow and pain it is so difficult to see why God is allowing all of this to happen and wonder WHERE is HE? He is right there with you and will never leave you and His strength will carry you all the way. I know that for sure. Love and prayers go out to you today--may you feel an extra measure of His peace and comfort today.
Ann Lewis

Vanessa and John said...

Hi, i too am in a struggle similar to yours though my daughter has severe CP. It's heartbreaking adn i also ponder the same questions adn get SOO angry with God. I feel as thought the miracles God gives are to people who aren't even aware, God bless you adn sweet little Joseph! :)

courtney said...


Thanks, again, for letting us see this piece of your heart. We are constantly praying for Joe and all of you-