Friday, April 3, 2009


If your speakers are off or on low....turn up the volume. The first song playing says it all. And says it in a tone that I can stand.

The question I'm asked most frequently is, "How awful it must be, how could God do this?"

If I'm feeling particularly crabby I answer, "Do what?" as if I don't know that they're referring to the seeming horror of living with a child with a congenital heart defect. If I've sufficiently spent time with God, receiving the graces of silent (on my end) time...I am better able to answer gently what I know to be true.

I know that God created JB, not defective or broken, but exactly how God intended for His glory and purpose. Period.
What the world calls a problem, a defect, is just not so.... if viewed through the lens of God's purpose. The kicker is I don't get to use that lens. I have to choose to trust it, trust that it's good, right, holy and bigger than me and my discomfort even if I can't see what it is or why it is.

Some people hate this answer. Sometimes I hate it too. But I know it's true.

I hated this answer a couple weeks ago as I held JB for hours and hours in the hospital while he suffered. I hadn't slept for 72 hours. I swore at God, at Jesus specifically, out loud on more that three occasions. It was the rage of a mother holding an inconsolable child at 3am. It was the rage of a broken human unable to fit the scriptural knowlege "ask and you shall receive," into the box of NOW. It was the rage of a temper-tantrum throwing 39 year-old saying if you don't do what I ask right now I am never going to believe you again. Damn you (only I didn't use damn.)

And it was then, as I tried the rocking chair again. Then, as my tears fell on JB's belly as he lay across my lap in only his ragged diaper tangled in the EKG wires and IV lines. Then, as I looked down and God brought to mind a Michaelangelo masterpiece, the Pieta, that R and I stood in awe of in Rome several years ago.

Then, as I held the image and looked at my own son. It was then that I knew, reminded once again that my limited understanding, my limited demand for relief now, was not unheard, was not un-attended to....JB and I were not alone in that room, railing against a cruel God inflicting or allowing pain for no reason. I was just not "let-in" on the why. Nor did I need to be.

In that moment, I was reminded of an event and a suffering that occured over 2,000 years ago. An event that I may not fully, and certainly not intellectually, understand this side of heaven. I don't need to fully grasp it to receive it's grace....and know that it is true.

As the rocking chair squeaked it's rhythmic motion, my tears paused and I watched peace fall on me and my son. I began my prayer of apology for my swearing...began my prayer of praise for a God that intimately and gently reminded me of His goodness, His grace, and His presence in the midst of the storm.

A God that knew JB would be born and have a special heart. A God that placed me in front of the Pieta years before I had this child, knowing I would need the reminder of that image to help me carry the pain while holding belief.

I don't pretend to find joy in the suffering, the pain. I am not happy about JB's physical ailments. But God has given me peace in the midst of the storm. The abiding peace that I am not alone, JB is not alone, and that there is purpose in the trials of congenital heart disease.

The first song that plays on the blog is Storm by Lifehouse. It is a reminder of Peter being invited by Jesus to get out of the boat and walk on water. The deal is Peter can do it, the seemingly impossible act of walking on water, as long as he keeps his eyes on Jesus. If you know the story, then you know the minute Peter takes his eyes off Jesus, he sinks. I love the story and I love the song. It isn't a happy, happy ditty about screaming praise and feeling bouncing joy in the midst of suffering (I'm not that holy...although I've met some folks that are close.) It is about keeping my eyes on Jesus and being given the grace in that process to know that everything is alright. All right in the eyes of God.

if I could just see you, everything would be alright.

if I'd see you this darkness would turn to light.

i will walk on water. You will catch me if i fall.

i will get lost into your eyes, i know everything will be alright.

i know everything is alright.

i know you didn't bring me out here to drown

so why am i ten feet under and upside down

barely surviving has become my purpose

cause i'm so used to living underneath the surface

if i could just see you everything would be alright

if i'd see you this darkness would turn to light

and i will walk on water

and you will catch me if i fall

and i will get lost into your eyes

i know everything will be alright

and i will walk on water

and you will catch me if i fall

and i will get lost into your eyes

i know everything will be alright

i know everything is alright


Anonymous said...

Thanks. You give me hope.

Stephanie said...

Thank you for praying for my son. And thank you for posting your thoughts and the graces God is giving you. It really does bring great encouragement to see how God is meeting someone in a similar situation- more than I even expected. Thank you. May God continue to provide for your beautiful son and your precious family.

Melania said...

What a beautiful blog! God is mighty to save.

Angie said...

Dearest KR,

I do not know you but was delighted to find your comment on Kim Arnold's blog today:

"Happy, snappy, chronicles of fantasy family life are of no help to those of us wrestling with diagnoses, diapers and desert wanderings."

So I just had to look you up and find your blog; I am so glad I did!

Then, when I read in your post of 4/3/09,

“It was the rage of a mother holding an inconsolable child at 3am. It was the rage of a broken human unable to fit the scriptural knowledge 'ask and you shall receive,' into the box of NOW,"

I knew I had to write you to thank you for your candor about the realities of our humanness in the midst of immense suffering.

I would love for you to visit my blog to read my husband's similar outcry in his post of 5/7/09, "I Asked for Bread and Got a Stone":

Your cries resonate with the cries of our heart. Your love for our Lord and His amazing sacrifice of His own Son resonate with our love for and amazement at His sacrificial grace and overwhelming love for us AND our children that shakes up the human cries of the short-term perspective and turns them into the child-like groanings for the pain of a Heavenly Father who GAVE UP the Son most precious to Him for OUR sakes - for us AND our children!

Thank you for your love for Him and for your willingness to share your pain, your humanness, and your heart with us. Now that we "know" JB, we will pray along with you for his continued healing and well-being, and for you – for God's comfort for you (and your husband), and for His sustenance for the journey ahead.

Again, I thank you so for sharing your heart and your love for our Father who sees with a different lens that we "choose to trust...that it's good, right, holy and bigger than me and my discomfort even if I can't see what it is or why it is."

Your words minister in so many ways to our broken hearts, and yet our trusting and hopeful hearts as we look to the God who loves us with all of His heart!

May God bless you and yours, KR.

In His love,