Wednesday, March 14, 2007

Bigger than Pinocchio's Nose

Thanks once again for all of the feedback on special needs; we continue to gather contacts and information. We have received some really great information from people.

We're enjoying the great weather, and are excited about an upcoming spring break. The break is next week and we are planning to go to a cabin with some friends over the weekend.

We have discussed a short film that has been in the making. We finally got to see it this week- absolutely loved it! It is a 6-minute film that basically tells the story of Eliot's life. We partnered with ignitermedia & worshiphouse. We want to say thanks to our friend Kent & also to Rob for somehow capturing a glimpse of our son's life in 6 minutes. If anyone is interested in the movie, we can get you a copy. It will be released around the end of the month. Just shoot us an e-mail. (matthewlyle@yahoo.com).

One day my dad was telling the story of Eliot and trisomy 18 to someone in his town. This person will remain anonymous- first and foremost because my father exercised wisdom; I do not who it was. Secondly, if I did know I would still allow anonymity for fear that at least one of my friends would feel the need to speak to him. I digress.

The identity is not the point; the reaction is. The mysterman’s reply upon hearing that Ginny & I were to have a sick son with a short-life expectancy was:

Wow. There had to be some serious sin somewhere.

It’s important at this juncture to know that one characteristic I love about my dad is his compassion. I don’t really know what he did. He didn’t get that far in the story. I think my reaction was pretty much the end of my dad relaying the story to me. However, the fact that my father is not in jail for murder, to me, shows his admirable compassion.

Seriously, upon hearing this story I had two competing emotions: both of them strong and equally compelling.

One of them needs little explanation. I wanted to go Chuck Norris. I wanted to see blood. Blaming me or Ginny or someone else for all of this was a little too much for me to handle at the moment. What a pompous thing to say.

I’ll note here that I include his comment not to stir anything up, but because I believe this person is not alone in his sentiment. Jokes aside, we all are at least tempted to think this bit of theology sounds right because it just plain makes sense. However, I am thankful for a God that makes no sense.

The emotion in a dead-heat with anger was genuine sadness. Sympathy for anyone who claimed to know God and thought of Him this way. I mean it keeps me up at night. I want to defend God. To set the record straight. I want this person- and the many others who serve such a small god- to encounter a god bigger than Pinocchio’s nose. I want them to know the living God.

Pinocchio’s nose grows when he lies. It only reacts to Pinocchio. If he lies, the nose grows. No lie, then nothing happens.

Once again my contempt for the so-called prosperity gospel is illuminated. The flip-side of believing that doing such & such means that God will bless you, is the idea that if you do wrong, God is waiting, ruler in hand to rap your knuckles.

Now, God can and does punish sin. He even reserves the right to do so on this earth. Scripture does contain examples where sin resulted in punishment by God- even to the extent of losing children. I do not deny that God can so act. However, that’s the point, I cannot limit God by saying that He always does this or He never will do this. He is God. I believe it would be futile to assume I know the reasoning behind his actions and allowances.

I cannot know the why’s of God. I can only hope to know God.

And this I know of God. He is greater than Pinocchio’s nose. He is not just reacting to me. Instead of rewarding my good and punishing my bad, He overwhelms with love in the midst of my filth. For anger, pride, lust, and selfishness- his reaction is forgiveness.

Where one might see punishment, I see the work of God. Eliot’s life was, without a doubt, the greatest proof of my faith. Sounds more like a work of God than His penalty.

(John 9)
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.”

22 comments:

gracie said...

Well, just so you know, I tell as many people as possible about Eliot because reading this blog has changed me and the way I see my children and (try to) live without fear of bad things happening to them. I read your list of 10/11 things learned, to a grandmother who lost a 4yr old to leukemia...
All who hear about Eliot are as amazed as I have been at the love and power in his short life. I continue to enjoy your insights in this journey because you are brave enough to share them and be honest about them. Thank you soooo much.

Anonymous said...

If anyone has questioned God's intention or His purpose in Eliot's life should read the numerous comments that are posted thru your blog. Eliot's sweet face and his ongoing story has changed lives. I, for one, have been reminded of so much as I have walked along with you thru this journey. The more amazing thing is that telling the story isn't enough for you and Ginny, you will do more. You do it out of your everlasting love for Eliot and in honor of a truly wonderful and giving God. While I was reading your post, I was thinking of the verse that you closed with. Eliot's purpose was greater than even now any of us can imagine, and God's favor that he found in you guys to parent this precious boy displays once again His wisdom and His perfection.
Love you both-
Carrie Uberecken

jan margrave said...

i am not a theologically-deep person. i have never understood your father's friend's perspective. when ubc pastor kyle lake was electrocuted while performing a baptism in waco, texas, a friend said the same thing to me. i just stared at her, unbelieving and not understanding. it just doesn't make sense to me. what does make sense is that God would allow eliot to be born to two people who were chosen to experience deep love and pain for this precious baby and to impact so many others through your story.

Anonymous said...

Amen!

natalie said...

Your words and wisdom constantly inspire me to be a better Christian. Thank you for all that you share...

God Bless you,
Natalie
Macon, GA

Anonymous said...

Matt and Ginny- There is an article in the NY Times from March 13 that discusses perinatal hospice, trisomy 18 and all sorts of other topics that may interest you. Go to the times web site if you want to read it- it is still up. Think about yall all the time- and will be praying for the "rude guy" your dad encountered as it sounds like he needs it. My grandmother used to always say to pray for those type folks-then she'd say "Oh, bless their ignorant little hearts." Ha!!! Love- Catherine

Lacey said...

Another great post! Another wonderful revelation of God's love & grace. Another scripture to hold me up. Thanks

Anonymous said...

I found you a long time ago and have followed your story...but I have never commented.

My heart broke for you when Eliot lost his fight. My son has a rare form of trisomy 21 (Mosaic Downs Syndrome) and I was pulling for Eliot until the very end and I am still pulling for you and Ginny.

This man needs to look at this from both sides. If he believes that this was a result of sin, then he might as well believe addicted prostitutes that have no trouble conceiving 6 healthy children with 6 different people are being rewarded.

Eliot is a blessing and continues to be so.

(I'm also from Arkansas...Go Hogs!)

~Leslie

Sarah's In the Midst of It said...

To say that, he would have to be saying that Eliot was your punishment--and nobody, certainly not one of the sweetest children EVER--is a punishment. Children are incredible blessings, whether all DNA turn out perfect or not.

I just told Addison the same thing while she was sleeping tonight. :)

Ignorance is really hard to take. Men like your father who have compassion on the ignorant amaze me. I hope I could respond the same. Probably not.

Peach said...

I am touched once again and moved to re-examine my own thinking and responses. How do I view my Heavenly Father?

Thank you for challenging us all, Matt.

Victoria said...

The one constant in my life I have always known, is that my son Isaac and your Eliot, although neither have them were blessed with lives long in days because of their Trisomy 18 diagnoses -- they were NOT a mistake. Not a genetic mistake, not a mistake being born, not a mistake to be corrected. I share your ire (hence my comment, rather than my usual lurking) at this comment. Sadly I heard it myself from a "Evangelical" brother who said, "I don't know why the Devil took your child!" Oh my, my!! However, I share that I know from experience (Isaac would have been 6 this year had he lived) you will be strengthen in confronting this clearly mishapen belief. And I too aplaud your father at not strangling the guy on site. Meanwhile, you go Dad!!! I have so enjoyed reading your blog and regularly refer other Dads to it who are facing their own challenges with learning about a Trisomy 18 pregnancy and birth.

FunkyMonkeyJunk said...

First of all, I'm so sorry that your dad (and you) had to listen to such words. How hurtful! Even if it were my belief that God kills innocent infants to discipline sinful parents (which is not what I think), WHY say such a thing, other than to elevate myself to a pious self-righteousness?

When we lost our pregnancy last year, it astounded me the awful things people say in His name. Fortunately, I was always so astounded that my sarcasm button never got pushed. I would just sit in shocked silence. I know I would LIKE to be gracious about such judgement, but I'm not sure I could do it if I were ever thinking straight.

I know I don't have to tell you this, but so many of us believe Eliot was a blessing to US. We can only imagine what a blessing he was to you as his parents!

Anonymous said...

Thank you for spurring all of us to see the bigger picture. God's picture. Everything that we go thru has to be filtered thru the hands of our Heavenly Father. Good things and bad. You were chosen to be Eliot's mommy and daddy. Even though it was just a short while, you were God's choice. God is all knowing and trusted you both enough to give Eliot to you. Thank you for making the choice to trust in Him with the bigger picture.

In Christ,
Christy Edmondson McMurrian

Anonymous said...

Your faith is amazing! God sends us gifts that we might think we can't bear, but He knows we can. We are forever changed by these gifts, and we come to realize how many precious gifts God gives us. Eliot was a gift. We came to know Christ through a a little child that showed us what wonders our Father really does make. Life is a awesome, powerful gift given to us by our Creator. God has a plan. Eliot is home with the Lord. But on Earth we are left to challenge our selves to be like Eliot, to be like Christ, and to always tresure the sanctity of life.

Collin and Stephanie Poage said...

God bless you guys... My jaw literally dropped here at my computer reading what "Mysteryman" said to your Dad, Matt. Thank you for walking me through the steps of releasing the original emotions of wanting Chuck Norris (and Jack Bauer) to take care of that guy for good. Your Dad exercised supernatural restraint. Amazing.

I praise Jesus for the incredible works He is doing through you and Ginny in your ministry through this blog. Thank you for allowing Him to use you and your lives for His Glory.

Alisha said...

I just happened on your site by means of blog shopping and I stand in awe of your faith and ability to press on in the face of Eliot's journey. Reading your story made me realize, through tears, how often I take my own children for granted and how that everyday we witness God's miracles, that we need only to open our hearts and eyes to receive them. Thank you for sharing both your joy and pain.

polly said...

Amen to your post. After being absolutely astonished by this guy's remark (and felt rather chuck norris-y myself), I felt truly sorry for him. I hope he can one day understand. Until then--you've done a marvelous job of explaining just why his comment is so incorrect. I truly admire your faith and story.

flakymn said...

I realized when our infertility took over, that I indeed had a "just world mentality". I somehow believed that my life had been going okay because of how I had been. I think it is only when you are faced with a tragedy or dissapointment that you realize that this thinking (even if under the surface in my case) is incorrect and, as the Lord said in the Bible. "Neither this man nor his parents sinned." Amen!

Anonymous said...

"There had to be some serious sin somewhere." There was - in the garden - and "death passed to all because all were born sinners" (Romans 5:12) I am so sorry that you had to hear such words of careless ignorance. On behalf of all insensitive Christians everywhere, I would like to ask your forgivness.
I hope that your dad will pass the video along to the mystery man so that he can see the blessing that your son has been & see the faith and faithfulness that you and your wife have exemplified.
We are praying for you out here in California.

Anonymous said...

I have a son who was born with a genetic disorder. While we were searching for his diagnosis, my very own father in law displayed the same reaction as the rude guy you mention.

Talk about heart breaking.

People have a hard time understanding why difficult things happen to good folks. It's hard to accept things like this - hard to process it. We don't know the reasons, but we don't have to. God is in control.

My prayers go out to you. Your story has touched me deeply.

theragan3 said...

I don't know you but I found your site thru another blog. I went and watched Eliots 99 balloon video and was moved to tears. What a long journey you have been on lately. I could identify with some of your emotions as you watched your son. My son Moses, born with Downs Syndrome, had 31 sweet days with us before the Father took him home. We gave him the name Moses because of one of the meanings we found - created for special purposes.

Both Eliot and Moses were created for a reason and anyone who questions God's ways are flat out wrong. They were/are PERFECT in His eyes and were NOT a mistake. I feel sorry for the one who made the comment about 'sin'. He obviously isn't talking about MY FATHER when he says that. I completely understand your anger at the comment.

Our sons are now perfect and are playing together at Jesus' feet. What a comfort to know that one day we will be reunited with them! I can't wait!!

May God's grace,peace and mercy be on your lives today and each day. Thank you for sharing Eliot with the world and letting his light and testimony be an encouragement to my heart.
Erinn Ragan
www.moses-mackay-ragan.memory-of.com

ivis said...

omg...god is so good and he blessed u guys with Eliot..just to let u know he was a strong boy...also u guys were brave and helped ur child alot he should b proud of having such good parents like u:)....god bless yall