Wednesday, February 16, 2011

February 16, 2011: Square One


Check in:  Body - hurts less today.  Did legs.  It'll hurt most on Friday.  Tomorrow is treadmill.  Looking forward to the treadmill.  I LOVE the treadmill.  Seriously.

Ang is doing well.  Her major projects at work are cooling off right now, and pretty soon, she'll transition back to her permanent position.

Ali rules the universe.  We went out for chinese tonight, and she ate sizzling rice soup!  She is such a little grownup.  Enjoy the karate outfit, although I'm afraid to wash it; one hot dry and it might be too small!

Tonight, I'm going deep.

I had a really sad moment as I tucked in Ali tonight.  It was quiet.  No singing, no story, but what I noticed the most was...

no prayer.

I thought, "we used to pray, didn't we?  What was that prayer?"

Then, another shot of electricity in the chest.

Ali and I used to say together, "Dear God, thank you for making me (Ali) bigger, and Bella better, Amen."

On my knees while Ang was asleep with Bella in her belly, I used to say, "Thank you God for the healthy baby in my wife's belly," as I stared through the covers at my unborn child.

On my knees while Bella slept in her isolette in the NICU, tears streamed down my face as I begged and bargained with God that she have the EB Simplex that kids often grow out of by 2.

In my car on I-15 in Idaho and Montana, I asked God for not just a good outcome, but since I was asking, the best outcome out of any kid in the study so far.

On the park bench in Minneapolis, upon hearing, "I'm gonna take her home," I asked God, "Really?  All of this... you lead us here with enough signs that I fill a book about it... all to just take her?"

In the most sincere humility I can muster, after all this, I'm pretty sure I don't know the first thing about prayer.

I know about faith.  My faith is that I believe that God created every thing, and as such is a part of every thing and every situation.  If that is the case, all I have to do is look for God in any moment and there God is.  I believe therefore that I get to choose my response to any event, any circumstance, and in doing so, I affect the outcome, AND God has surrounded me with infinite ways to affect that outcome.  It's just up to me to choose.

What I freely admit I no longer know anything about is prayer.

What is prayer?  Is it a request?  Is it a thank you?  When I used to work in hospice, I didn't pray to God to save anyone's life.  I prayed for comfort along their journey from life to afterlife, and I prayed for comfort for their family.  I felt pretty grounded in that type of prayer.  For those of you that have been here since Bella's birth, you may recall me asking this same question.  I asked whether or not it is right to prayer for a miracle.  Why is my agenda more important than anyone else's, and if God has a divine plan, than why is my agenda more important than God's?  If God has a plan, how could I even fathom a sliver of it?

The day God told me he was taking Bella home, as I was walking to the hospital, I saw ants walking in the crack of the sidewalk.  God asked, "Can those ants see what you can see?"

"No."  I replied.

"But are they in the same reality?"

"Yes.  They are in my reality, even though I - as I know myself - may not exist the same way in theirs."


Try to wrap your brain around how a human occurs to an ant.  Do they notice we shaved?  Can they tell we failed a chemistry test?  We are giants in their world.  They simply don't have the capacity we have.  They have different capacities, but even though we are in the "same world at the same time,"  our worlds are very different.

So it is with humans and God.

I loved the connection I felt to God all those mornings on the park bench in Minnesota.  That's what kept me on track and grounded.  I knew that every morning, I had to walk into that hospital, quietly sing in Bella's ear her good morning song from my heart, then instantaneously turn my heart off, and switch on my clinician brain, walk out into rounds with 10-12 professionals, and not only keep up, but make sure nothing slipped through the cracks of the endless but necessary rotations and teams that it took to keep Bella alive every single day.  I needed that talk with God every morning.  I know I wouldn't have been able to operate as powerfully on Bella's behalf without that partnership.

My faith is first and foremost pragmatic.  It empowers me to live at a higher performance capacity than without it.  It allows me to still function AT ALL in the face of this journey.  It's like how I talked about physical strength last night.  Spiritual strength works in its own unique distinct way.

How can I have faith and have such a breakdown in prayer?  Because my faith isn't perfect, and I'm not perfect.  I have breakdowns in areas of life every. single. day.  However, I work at not making myself wrong for them.

Seriously?  I want to make someone/something wrong for my record on prayer.  I guess I thought that some prayers get answered and some don't.  Well, I feel like in that context, I'm in a prayer slump.  I'm like 0 for my last 4 big ones.  It's left me scratching my head.  I am currently resigned to being God's steward.  Whatever he gives me, I'll work with and transform into something better/more beautiful.  However, I have retired from asking for him to give me or not give me any particulars anymore.  That doesn't seem to be the ticket.

Maybe I'm just unlucky.  Maybe I'm about to go 4 for 4 on prayer requests if I just try again.

Maybe that's not what prayer is about at all.  Maybe prayer is more about the process than the product.

I'm 38, raised in the church, left and pursued multiple different spiritual paths, return in my early 30's, and feel like I'm 4 again.  I thought performing a musical instrument was life long learning.  This spiritual journey is more than that.

What is prayer to you?

God night.


  1. Prayer for me is a sharing my heart with God. When I am overwhelmed and at my most worried and sometimes at my happiest, I share those moments of my heart. I don't usually ask for something as much as I hope for God's embrace, comfort or blessing... and sometimes enlightenment, how to better understand something or someone.

  2. For me,prayer is simply talking to God.Yes, I have been known to beg, plead and sometimes i can only say please God please God please god.Sometimes ihave to tell god to keep up because i am so busy and he just has to keep up.Mostly i pray for Gods will to be Done.You didnt get the answer you wanted or deserved that does not mean you dont do so well with prayer.After all you have the gift of amazing faith--where do you think that comes from. You know better than I that prayer is always answered just not how we expect it to.I believe jesus was right beside you and crying with as you struggled to keep precious Bella alive.Faith or no faith at the end of the day it stinks and the pain is great and as all as I can do is pray for your comfort and that I will do daily.

  3. I did a mighty good job of seriously screwing up my life early on......seriously screwing it up. I got involved in drugs and people making the wrong choices, and eventually found my way into a 12 step fellowship. My life is now dedicated to helping others, and my faith and spiritual journey deepens every day.

    One of the things it says in the basic text of the fellowship I belong to, is that we pray, "only for knowledge of God's will, and the ability to carry it out." Soooooo hard, but that focus works for me, and has helped my understanding of prayer. I no longer ask God in prayer for specifics. I believe, whole-heartedly, that God wants and intends good things for me in my life. I just need to trust him.

    So when I talk to God, I pray for knowledge of his will.....a glimpse of the map,if you will (not the whole map mind you, but kinda like in that old school Dungeons and Dragons game where all you could see was a crossroad until you picked one..) and for the things I need inside of me to make it happen. Because sometimes that path that I feel God nudging me down, is far more rocky than the path I want to take. After all I've been through though, I TRUST that no matter how rugged that path looks, the results will always be infinitely better than that of a path I'd picked out on my own.

    My go to comfort prayer is "God, grant me the serenity, to accept the things I cannot change. Courage to change the things I can, and the wisdom to know the difference."


  4. I don't have answers on prayer. However, I just want to say I love that photo of Bella; she looks so bright and beautiful in green (such a big girl in this picture).

    As for prayers, I don't think you have the wrong idea, but I can see how you question the practice.

    Keep your faith; as you have taught so many about that.

    Go Ali!

  5. Prayer for me is talking to the only ONE who truly knows me. All my insecurities, faults, questions, fears, accomplishments, joys. I laugh with HIM, cry to HIM, yell at HIM and yet HE is there ALWAYS. One of the times I yelled the loudest was when he brought Bella home. Understanding this side of heaven is hard.


  6. For me, it's giving up the misguided belief that I can control the future. Prayer is hope that God will take care of things.

    I've been mighty lucky in prayer and my challenge is to remember to include it when things are going really really well. Not that I've gotten all I pray for or outcomes have been my way but I'm grateful.

    Lately, I feel like I spend too much time reading the EB blogs......I feel like when I read certain ones, it's just waiting for the bad to happen since it seems inevitable. THEN, I figure out how I can donate more money to cure EB.

    Not sure why I fell upon EB blogs because I actually don't read blogs or blog. I still have a handwritten journal.....but I'm here and
    pulling for you and Team Bella....

  7. I suppose my take on it is that I have no right to ask Him for anything life changing, as He is in charge of all that and already knows what is going to happen so it is an exercise in futility anyway. I do pray for strength, His guidance, for myself and also Michael and Ryan. I say a lot of thank you's!

    I still read the blog every day - today was especially thought provoking. And Ali looks darling in her karate outfit. (PS - dry it on damp dry!) Hi to Angelique. Love to all, Terri

  8. When I see the pictures of Bella,,she seems to have such a calmness and understanding,,I truly believe she was an Angel ,she was never meant to stay only to make things better for others through you. God picked you to care for his Angel,,what a blessing,,May her work continue

  9. I'm not really sure how I feel about big G "God," as an entity or a being. So for me, prayer is being still, and connecting to that part of me that I know is far bigger than me. In my belief system, it's the source of all life and there is no other way to describe it than pure love. Once I connect, prayer is about listening to what's inside that space, sometimes with an intention for wisdom in a certain area or life, but sometimes just to listen.

  10. I was reading your blog this morning when my 2 year old son came up to sit with me. When I scrolled down to where Bella's picture became visible, he broke out in a huge smile, and pointed at her picture. He was mesmerized, and had to touch her picture on the screen, all the while smiling and saying baby over and over. Even someone as young as he is can sense how special she was.

  11. A long time ago, someone told me this: God ALWAYS answers your prayers..sometimes he says yes, sometimes no, and sometimes not right now. Just like we do with our kids, because we know WAY more than they do. But that doesn't mean that we want them to stop asking or to feel like we will never say yes. And I do believe like you said, it's about the relationship...if we're supposed to pray without ceasing, its not gonna be all asking for something, it's not gonna be all thanks. The Lords Prayer is supposed to be our guide....Give Praise, Give Thanks, Ask Forgiveness, Ask for His Will and His provision...

  12. What a great question...prayer for me is having a conversation with God. I thank him for all of my many blessings and tell him about my day and what I am thinking. I do ask him for miracles or blessings or basic needs. I guess, I just have the faith that God is listening to me. ME, of all people, he is actually listening. I believe that there are things that I or anyone asks for, that God feels we don't need right now in our lives. I KNOW that God answers my prayers. He does. I have seen it...with Bella, with Daylon, with other aspects of my life. However, just because we want something doesn't mean we need it or that he is going to make it happen for us. If God has a plan for us or our loved ones, who are we to ask him to alter his plans. He knows what he is doing and he has a reason for it that maybe we can't see now but, will see later once it's revealed to us. Does that mean I agree with his plan for me or my loved ones right now, no, not always. But, I still have faith, and I know that my Heavenly Father loves me and all will be revealed. That brings me comfort.

    I will pray that God gives you and your family the comfort that you need right now. I know he will answer my prayers. Be strong.

    I love the picture of Ali in her great Karate outfit. Too adorable. Soon you'll have to upload a video of Ali showing us her moves.

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA

  13. I think prayer is many things, but for me it is a way to build and enrich my relationship with God. It is an open dialogue in which I speak openly to Him (out loud, it helps for some reason), I thank and praise Him for the many blessings He has provided me, ask for forgiveness and ask that He help me learn more about Him, and help me to walk in His path. I am honest with him about my deepest fears and sins. When I pray about friends and family that are sick or grieving I ask for His healing and grace.

    My best friend in Texas was just diagnosed with cancer. He is not an active Christ follower and at 57 simply has not and does not attend church. I prayed that he would be open to going and....the other day he accepted my invitation! Praises! I wept and took a moment to thank God, and now I pray that my friend is open to the message this Sunday and that he is stirred to further pursue a relationship with God.
    I don't know how that will work out (or all of the other things we pray for), but God will answer...sometimes His timing will be way off from our expectation, sometimes His answer will be 'no', and sometimes He will blow us away with His grace and mercy!

    All our love and Blessings,
    The Gleason's

  14. Hi Tim-

    I think that's a great question! Prayer is our way of communicating with God - and developing our relationship with Him. In a REALLY over-simplified way, I think it's like the parent-child relationship. Our kids often (like, every day) ask us for things and we say "no" with the occasional "yes" thrown in here and there. (This is how things have been going with Team A lately anyway- LOL!) But the point is, our kids keep that dialogue open with us- they don't stop talking to us just because we gave them an answer they didn't like or want to hear.

    God asks us to pray - not because He doesn't already know what we are going to say, but because He desires to have a relationship with us. I don't think it's wrong to ask God for anything - Philippians 4:6 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."

    Sorry to ramble - just a few thoughts! We love you and will continue to pray for you, Ang and Ali!

    Laura (for the Team)

    PS - Ali's karate outfit rocks!!

  15. Hi Ringgold family!

    It has been a very long time since I last posted, but I feel that I have something to say to you all in regards to prayer.

    My church (and Pastor!) has challenged every member in our congregation to pray for 11 minutes everyday in 2011. Every one of our Pastor's sermons have been on some aspect of pray since the beginning of the year. Sorry if this comment is too much, but I've learned a lot and feel the need to share them with you (because you did ask! lol)!

    First off, we all need to get in the habit of calling God, FATHER.

    Secondly, prayer is "simply" a conversation with our Heavenly Father. Part of this conversation is not trying to manipulate or bargin with God, which I know that I, and many other, are guilty of...

    Thirdly, we need to pour our HEARTS out to our Father. Just as Hannah did in the Bible as she begged God for a son (Samuel), we must do this. But we also cannot WANT to be heard by our fellow man. Hannah was praying at the altar and Eli (the priest) threw her out because he thought she was drunk. A prayer is a private conversation with God.

    Lastly, we need to have FAITH and believe that our prayers are being heard and that they WILL be answered. But, we have to have HOPE that God will answer our prayers in a way that he sees fitting...we need to be willing to accept his answer, not our own answer. Asking God for things is not a bad thing...we just have to accept his answer!

    Well...that was longer than I intended, and I'm sorry if it went overboard!

    Love and Prayers...

    Megan from WV

  16. Prayer to me is a special bond with God. He already knows my heart, but praying and talking with God is very deep connection that cannot be replace, and allows me to let all my walls down. Most importantly, I thank HIM every day for everything I have...whether I wanted what came my way or not...ultimately, God's will is perfect- sometimes its a struggle to accept his will...I know that I cannot 2nd guess God's will...God is full of love and mercy and loves us unconditionally.

  17. Hi Tim,It has been awhile since I wrote. I think prayer, for me, has changed a bunch for me as I go thru life. I've had big problems physical and mental with illness of my first child, an abusive first husband who broke my children's spirits and then how they have tried to live life with the results. It just about completely breaks a parent's heart even as they live. Now in my late 70's I have completely turned it all over to Christ and accept that HE and God know what they are doing. I pray that my personality faults be removed and that for me, the life of GOD will manifest in my contribution to this world. What better way to let God live but thru me. Que Sera, Que Sera as the song says. I look for you and yours every Sunday in church. Blessings to you and your family. It will all work out one way or another.

    With love from Greenie