Thursday, July 2, 2009

A New Old Post

Thanks so much for still checking in during my long absence. I had a request from a beloved soul-heart-mama to re-post an account of one of JB's hospital stays. I am so new to all the technology and didn't know how to re-post a post so I'll just link to it here.
I am grateful if my honesty is helpful to anyone struggling through the valley of an ill child. God has never failed to flood me with his presence during some dark days and nights by JB's bedside. The paradox of this is that it is not always a feeling. Sometimes it's just an awareness that His promises are true and unfailing. Sometimes it's me clinging to the hope that this too shall pass. And then being simultaneously afraid that it passing may mean something worse is coming.
What I have learned through the trials of my life so far is that faith is making a mental and physical decision to believe...regardless of the shifting tides of my feelings. It's not active faith to me if it's resignation. Surrender is active and it's beyond powerful. Resignation is hopeless.
Please, please, whatever situation you find yourself in today...hold hope's unfailing hand. Don't be afraid to believe.

Monday, May 11, 2009

Noah's Road

I spend a good amount of time visiting blogs written by parents of hospitalized, ill, or special needs children. It's a privilege to pray for families I may never meet and it's certainly opened my eyes and heart to the non-unique struggle that so many of us share.

I'm often saddened to read accounts of suffering and dismal diagnoses but rarely am I shocked with grief.

Tonight, I can only weep and groan my prayer.

Noah is a beautiful little boy. He was born in November and was thriving as a happy and healthy baby. On April 20th he was violently shaken by a daycare provider resulting in traumatic brain injury.

It took me several long minutes to even type that sentence.

I just can't wrap my head around it. Or my heart. Don't want to.

I sit here tonight, listening to JB's breathing and watching him in his crib through the video monitor on my desk. I've watched my husband go in a couple times to take his blood pressure, give medicaion, count his breathing. I've tried to imagine how it would feel to know that JB's health issues were caused by another person. I can't.

But what I can do is pray. Will you join me? Please visit Noah's page here and offer your prayers for him and for his family. I will be praying for a mighty miracle of God...for Noah and the person that did this to him.
Thanks so much.

Sunday, May 3, 2009

Fed Up..and down about it

We spent the weekend pretty lonely. It's not lonely when it's just the three of us and we've designed it that way. That's called great private family time. It's lonely when big plans are in place with friends, family and church and then a little mutating strain of invisible danger puts the brakes on social activity. And even lonelier when I explain why we won't gather and I'm on the receiving end of some harsh criticism and judgement. Surprised? Don't be.

One thing I learned early on in this journey of parenthood is that the moment I had a child everyone within range of me has an opinion on what I'm doing, how I'm doing it and a way to do it better, smarter, healthier, greener, holier, faster...blah,blah,blah.

I found it funny at first. Yup, I was laughing when a friend suggested that I should avoid all ultrasounds entirely in my very high risk pregnancy. She was worried about radiation. I was thrilled to have access to the technology considering I'd miscarried twice, am diabetic, and was considered "of advanced maternal age."

JB survived the multitude of ultrasounds and ironically, none of them detected(nor caused) his heart defects. I was questioned about the C-section that brought JB safely into this world, the formula I was adding to breast milk, our decision to have JB circumcised, and our decision to proceed with airway surgery when his heavy breathing became an issue. I still get emotional over our almost postponing that procedure as it led to the detection of his critical heart issues. I will never in my life experience gratitude to God as profoundly as I did the day the heart surgeon, having finished JB's 4 hour procedure, came out shaking his head at his amazement that an almost 5 month old baby survived so long with an aorta almost entirely closed.

What ran through my mind was how grateful I was that I had a C-section...maybe that provided an easier way into this world for his little body. How grateful I was for the formula that so easily fed him from a bottle when nursing seemed difficult for reasons we had no idea about then. I still shudder when I think about the circumcision, although he truly didn't appear to experience any pain thanks to an overload of numbing cream I'd secretly smeared everywhere prior to the procedure. (Poor boy may still be numb.)

So why then do we get so invested in what others are doing? Why does another mother care if I skip a birthday party out of caution for my son's health? Did she sit through the long hospital stay in March brought on by the mildest of viruses? Does what I choose to do influence or threaten what she's choosing to do?

In search of these answers today, I could only examine my own self-righteousness for answers. Usually the best place to start. Why do I judge what others do with their children, their marriage, their life, their business? After pondering for quite awhile, the only answer I came up with was that it's usually when they are doing something different from me and I am not secure enough in my own way to not be influenced. Or I'm completely convinced that their way is wrong and I somehow need to judge it harshly to cement that knowledge for myself. This not only doesn't serve any is destructively polarizing.

This gets played out so heinously when it comes to Christianity. There are so many people hating and harming other people and, God help us, doing it in the sacred name of Jesus. Folks like the one-family-hate-group-masquerading-as-a-church, Westboro Baptist Church. Protesting soldiers funerals with vile slogans is not something Jesus would ever do. I try to pray for them but more often than not, I just think equally hateful thoughts about them. God forgive me and God help me. Thankfully, there are saints like Craig Gross and the team at Fireproof Ministries that restore my hope and help me to remember that the life that honors Jesus is the life of love extended, grace shared, and judgment of all kinds best left to God. Craig and crew go to brothels, strip clubs, porn conventions and other dark places sharing the love and grace of God. Sounds like exactly what Jesus would do. I wish the church people that so frequently criticize Craig and his mission would turn their wrath toward the pure evil that is perpetuated by Westboro.

When I'm secure about my beliefs and decisions I have much less need to bang someone else over the head with what they should do. It means admitting that I don't know what's best for them. I can barely sort out what's best for me. On issues of morality, I gladly share what I know to be true. But do I always come from a place of love and respect? God, I hope so.

Mr. R and I have decided that since we work from home, we have the luxury of keeping JB contained from public contact right now. That feels right to us, no matter what the news, CDC, or anyone else says. Doesn't mean we don't take advice into consideration. We do. I sincerely hope that by our choice, no one else feels they have to do likewise. And please God, I hope they don't continue to be unhappy or judgemental about our choice. We are not afraid. We are not overly worried. I read once that worry is like a rocking chair, feels like foreward movement but it isn't going anywhere. I was worried, then I took steps within my control to protect and prevent. That and lots of extra prayer eliminated worry. It didn't eliminate loneliness, but that's just how it will be right now. Maybe God is allowing all this private family time for a greater purpose.

All my sadness this weekend over being judged, being lonely and trying to sort it all out brought to mind a great experience the other day. I walked into the courtyard of a beautiful Catholic church, intending only to light a candle for the Compassion India team. Do not think me pious, it was also a self-imposed time out for some earlier ugly behavior. With a capital U.
As I approached the Mother Teresa statue, live music from the sanctuary began blasting through the outdoor speakers. And I do mean BLASTING. I was caught off-guard and started to weep, laughing through the tears at how God was probably saying, it needs to be LOUD for this thick-headed one to catch on. I lit my candle and sang along to the words inspired by St. Francis, words I desperately needed to hear and desperately need to live out:

Lord, make me an instrument of your peace,
Where there is hatred, let me bring your love
Where there is injury, pardon,
And where there is doubting, let me bring your faith.

Lord, make me an instrument of your peace
Where there is despairing, let me bring your hope
Where there is darkness, your light,
Where there is sadness,
Let me bring your joy.

Oh Divine Master, grant that I may seek
not so much to be consoled, as to console,
To be understood as to understand,
To be loved, as to love another

For it is in giving that we do receive
It is in pardoning that we all are pardoned,
And it is in dying, that we are all born again.
Lord, make me an instrument of your peace.

Wednesday, April 29, 2009

My Heroes Today

In the midst of the the fast-breaking swine flu and all the precautions needed for a special needs child, I was grateful to be reminded of the good news this morning.

The good news is that JB was born in America. Mr. R and I are employed. We have a roof over our heads. We have great health insurance. We have a wonderful Pediatrician. We have clean water. We have air-conditioning. God forbid the swine flu becomes pandemic, we have the possibility of anti-virals. We have access to hospitals. In fact, three to choose from. Don't get me wrong, I am praying against it, rearranging life to avoid it, reading my tweets, texts and tickers to be informed about it. It's a serious issue, no doubt about it.

But worldwide 26,000 children will die today. Otherwise healthy children that have no access to clean water, common medications, mosquito nets, life-saving vaccines. Children living in extreme poverty plain and simple. This same number will die tomorrow and Friday too.

Pete Wilson at is in India serving and blogging for Compassion International. He's not feeling well but is persevering on the journey. Please give yourself the gift of reading his accounts and pray for his wellness.
Melissa Fitzpatrick is on the trip as well, reading her post God's Shameless Love for the Poor literally brought me to my knees. One of the best blog posts I've ever read.
Angie Smith is another team member and her bravery in believing God through trials...because of as faith inspiring as it gets for me. She is one of the most authentic voices of Christianity today and her unbridled love for God is nothing short of amazing.

There are many other team members, I haven't read all the postings yet, but I am sure their accounts of the journey are just as inspiring. You can view them all by going to the Compassion Blog.

I love these people. It may help that I don't know them personally. But through their going forth...their writing...their willingness to see the truth and get busy doing something about it...I'm changed.

I will take precautions against the swine flu for JB, I will fight today and the rest of my life to protect his life...his well being. I do not control it--his life is entirely in God's hands. But I have to do my part with the knowledge, inspiration and circumstances God ordains.

Today, via the above heroes, my eyes are opened, the challenge I willing to extend my part beyond my own all those I come in contact with....and to those who I may never have contact with?

Today my answer is yes, I will do more to love those in my midst. I will sponsor more children, advocate for children, and with the grace of God, open my eyes to see all of us as God's children.

Monday, April 20, 2009

Prayers for Stellan

***Update. Baby Stellan is HOME!

Precious baby Stellan is scheduled for surgery in Boston tonight or tomorrow morning. Please join me in praying for this little boy, his family and the surgeons.

Saturday, April 11, 2009

Easter Rising

So many broken hearts.
The literal kind like JB's and all heart heroes.
The figurative kind like all of ours at one point or another.

Death, divorce, illness, grief, depression, heart break after another.

A family in California mourning their 8 year old daughter, allegedly killed by a Sunday School teacher. Heart shattering. Beyond comprehension.

Children and adults praying for new hearts, knowing their answered prayer means devastating loss to another family.
Parents preparing Easter baskets for children they pray will live to see Mother's Day.
Parents that walked the aisles of Target this year looking at all the Easter baskets they can't deliver to their child in Heaven.

Click on any of the blog links on the right and you'll read plenty of stories of heartache.
You'll read about pain, broken hearts, You'll also read about hope.
Hope that doesn't fail.
Hope that is so firmly rooted in Easter that it cannot be destroyed by Good Friday.
Hope that conquers illness, sorrow, grief...broken hearts.
Hope that conquers evil.
Hope that conquered death.
Still does.

Today we celebrate Easter. It's not about a bunny.

It's about Jesus rising from the tomb.
Literally. Completely.
This is what separates Jesus from every other supposed prophet.
He's not in the tomb.
All the others still are.

He was who he said he was. He did what he said he'd do.
He will do what he said he'll do.
He will mend our broken hearts, if we give him the pieces.
Through his rising, we rise.

Happy Easter.

Thursday, April 9, 2009

Good Friday Prayers for Shepherd

***Update 4/15/09 Shepherd's breathing difficulties are requiring a tracheostomy. Surgery is today. Please visit their blog for the updates and to offer encouragement.

Please join me in offering prayers for baby Shepherd.
He had surgery on April 1st to repair coarctation of his aorta (same CHD as JB.) Shepherd is a newborn and he's been having some difficulty breathing on his own. They have tried to remove the ventilator on a couple of occasions and each time it's been necessary to re-intubate him. It's a very painful surgery and the level of pain medications required can suppress respiratory function. It's a fine balance...and one that's not easily acheived.
I connected with this family via their blog and encourage you to visit their site and leave a prayer or encouraging comment for them to read.
As many of you know, and thankfully some of you don't, Intensive Care Units can be very lonely and disorienting. The heartiest of prayer warriors can become discouraged with "normal" life going on around a critically ill child. Stephanie (Shepherd's Mom) has posted several specific prayer requests for tomorrow and if you're inclined, please click here to go to the page and join us in asking God for His mighty healing and comforting grace for this family. Thanks so much.

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