Living a better story..

I haven't blogged in over a year. Not on this blog anyway. I write web content for a living and in order to live above the medical bills that's the only writing that I've allowed my time. At least that's what I tell myself when I'm not doing honesty.

The truth is I've had too much to say about JB's heart to write it down. And not enough distance from the emotion of it to chronicle the journey without potentially having a breakdown. Living it is hard enough...rehashing it might tip me over the edge. JB's heart condition has been the only story I've been living for quite some time.

I was foolish to believe that the further we got from his heart surgery the easier it would be to feel settled. Two years away from it and although I am profoundly grateful that he's alive and well, I am also acutely aware that we are always one errant heartbeat away from a nightmare. At least when we were in the hospital, we were in the midst of the storm. There was a paradoxical comfort to being in the thick of it. No time to think too much, plenty of medical people and monitors to keep close watch and keep JB going.

Upon leaving, all the doctors gave their parting orders, 'Go home and live normally.' But in their well-meaning sentence contained a certain ignorance and all-out promotion of denial. They might as well have said, 'Go home and act like you never saw your son in a coma on a ventilator, pretend that his heart was never broken, and if you have to acknowledge reality, just focus on the fact that we repaired his aorta as best we could, and we will not discuss all those things that linger and can't be surgically fixed right now."

Their form of comfort was no comfort at all. Or so I thought.

What I didn't take into consideration is that living normally hadn't been normal since I became a mother. All the things that were part of me as a solo person, suddenly vanished in the haze of wife, mother, and worker. JB's heart issues had just intensified a shift that had already taken place. A trade-off I had made all too eagerly the moment I became pregnant. I had given over all the individual longings, dreams and hopes that I'd cherished in exchange for pouring myself into my family. My own mother had drilled into my head at an early age that 'charity begins at home,' and it may but does it end there too?

Prior to having children, I used to love to go out late at night and bring coffee, donuts and toiletries to the hookers working a seedy strip of misery about 5 miles from our home. I was often criticized by some church people for not 'doing enough' to help the women. Truth is I thought it was very helpful to just bring them coffee, some items for them to clean up with and offer some conversation and prayer if they wanted it. One pastor told me I shouldn't go out to minister to them if I wasn't prepared to take them home and offer them a way out. His words kept me from going out to them for two weeks. I wasn't prepared to take anyone home. I had no desire to house anyone. I continually felt called to go but increasingly felt bad about just visiting with them and not housing, clothing and otherwise yanking them out of their pit.

Another time, I invited a friend to join me and she came fully agenda-ed to pray the salvation prayer with each one. I am not suggesting that this isn't a noble agenda. It's just that many of the women had already given their hearts to Jesus..many as children...and had just gotten woefully off track via drugs, alcohol, abuse etc. This friend couldn't believe that a hooker could be as saved as Billy Graham. I introduced her to the works of Brennan Manning and never saw her again.

These little late night jaunts were not major ministry in the television commercial kind of way, and a good argument could be made that they were self-serving. I always felt better on the way home. Not in a puffed-up-I-Just-did-a-great-service kind of way but in a profoundly satisfied soul-filled kind of way. The serving of the women in such a simple way was a reminder to me to get over myself and a great reminder to pay attention to myself. Each face I stared long into was a broken piece of humanity not unlike my own. Looking for filling and comfort in places that could never provide it. One too many disappointments with God leading to the desire for the quick relief of numbness at the end of a needle or crackle of a pipe. Meeting them in their misery alleviated my own in ways I can't explain.

And I long to go again. To venture out on a Friday night, long after the boys are in bed, to the women who walk the streets looking for relief. I've told myself, and heard it from others, that it wouldn't be safe and I can't risk bringing germs home to JB. Perhaps living a better story would be that the heroine who loves her family deeply knows that she can only really love them well if she's loving God well and serving where he's called her to serve....and although it's risky, a life lived fully for God always entails perceived risk. Perhaps it's riskier to repeatedly ignore His calls.

I long for these jaunts to be part of my story. I long to have the courage to ignore the people who think it's unsafe, irresponsible to my children at home, do-goody foolishness. I long to go because I want to be brave in the face of the fear. I long to go because I fear my story if I don't integrate the parts of me that existed before motherhood and congenital heart defects. I long to go because I want my life to be a story that my boys will be proud of.

When I first heard about the Living a Better Story seminar I thought about writing fiction and how great it would be to go to Portland and get inspired to literally work on my stories. Now I'm thinking if I can learn to live a better story personally, the fiction will somehow get written.

My hope is that being around people with the common goal of writing better stories will, by osmosis, create in me a desire to elevate my own story. Perhaps elevating my story would mean living normally, in the way God intended all along.

Living a Better Story Seminar from All Things Converge Podcast on Vimeo.

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.

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.

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 purpose..it 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.

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 withoutwax.tv 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 trials...is 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 presented..am I willing to extend my part beyond my own child...to 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.

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.

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, sorrow....one 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, grief.....life. 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.