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Sunday, October 19, 2014

For Little Ones Lost




I have never lost a child.  I have had two positive pregnancy tests and one signed adoption petition and every night I hold three sweet little ones in my arms and cover three little faces with kisses.  (I am an overly kissy-kiss-snuggle-squeeze-hug-me-tight kind of momma.)

I don't know the pain that mothers feel to have lost a child not yet born.  I can't say that I understand the sorrow of an empty crib, a quiet house, or unused toys.  Motherhood has been easy on my heart.

"Grown up doctors" (what I call doctors who take care of adults) deal with death on an almost daily basis.  They help their patients walk the final steps of life with as much dignity and as little suffering as possible.  Often there is tragedy and heartache, but sometimes, death comes as a mercy for an elderly patient who has slowly drifted away.  Grown up doctors spend a lot of time talking to their patients about end of life plans, living wills, and their DNR status.  Pediatricians, on the other hand, rarely deal with death.  We usher babies through their firsts....first breaths, first fever, first tooth, first words, and first steps.  We send five year olds off to kindergarten and tell mothers, "It will be ok. They will survive the first day of school and so will you."  We, like their parents, don't contemplate an end of life plan for most of our patients.  Losing a patient is always, always, a tragedy and rarely a mercy.  When we do deal with a child's death, it inevitably makes the world feel a little off balance.  We walk a little slower, talk a little less.  We want to call it a day and go home and cry.  We want to just stop, for a little while, and be angry at the injustice of it all.  We send our pediatrician friends messages that say, "Hold your little ones close tonight."  and we know that they will know what that means.  A little one is gone too soon and the only thing to do is go home, hold your babies tight, and cry more tears for the momma who has no baby to hold.

I went to seminary the first time because I wasn't sure if I even wanted to be a doctor.  I went back, ten years later, because I wasn't sure if I could stay a doctor and keep my faith.  How do we put the inexplicable suffering of little ones inside the paradigm of trust in a loving God?  That was the Big Question I wanted answered and why I voluntarily obtained a masters degree- for no other reason than to satisfy my own curiosity.  It wasn't until after they handed me my hard earned diploma, that I realized that perhaps there is no answer to my Big Question.  Anyone who thinks they know is fooling themselves. The one thing I did learn in seminary is this: God doesn't promise any answers to our questions, only that His own suffering presence will be with us in our pain.  My last project before I finished seminary was to write my own credo, my own statement of faith.  I decided that any statement of faith I wrote would have to include my Big Question.  Why leave out doubt when proclaiming one's belief?  I thought that I was writing a credo for me, something to help me sort through what I had seen and experienced so far as a physician.  Looking back, I think it was more than that.  I was writing a credo for me, for mothers and fathers whose faith has been paralyzed by grief, and for all the little ones lost.



A Creed for Little Ones Lost

I believe that you, little one, were made, designed, and hoped for
by the same God, the only God, who spoke the universe, the earth, and all things imagined into existence.

I believe that Jesus, beloved Son of God, was present at the dawn of Creation.  
That Jesus, the Eternal Creator God,
 sang the beautiful song that echoed throughout time and became your song. 
I believe that Jesus was loved and cherished by his own mother,
from his first breath until his last,
just like your mother cherished you.

And just like you, little one, Jesus knew suffering. 
He knew what it meant to fight for one last breath. 
He knew what it felt like to have every part of your body broken
and wounded beyond repair. 
He knew the loneliness of death;
Death that comes mercifully with the setting sun. 
But here is the beauty of Jesus’ story, and your story, too-
Jesus walked with you into death,
And then he forged a blazing path back to new life.
Jesus is alive, the Eternal One, 
waiting for the day when you, when I, when all of us 
will walk the Resurrection journey.

I believe that somehow, the Spirit of Life and Love, the Holy Spirit,
 was with you during every moment of your short life.  
This Flame of Love knew your heart and your sorrows 
and carried every tear to heaven 
as if each teardrop was a new, beautiful note of your timeless song.

Child, in the New Creation you will be even more perfect
 than you were in this one. 
You will talk and smile.
You will feel the sun’s warmth on your face and soft grass on your feet. 

Finally, I believe that Christ’s song is your song 
and your song is my song and we are not alone. 
We are part of the mysterious holy body called the church. 
The church is not just me (the living), but also you (the dead.)
The church is waiting for Jesus to return. 
We are hoping and believing that one day we will all sing together
 the song of the New Creation.



(This past week was Infant Loss Awareness Day and I have many friends who have shared their own grief as they mourn children who are with them no more.  I am sharing this creed for them, and for all of us who have come home and held our babies tight. )


Saturday, October 11, 2014

A little post about the little ear

We took Carter to see specialists at Johns Hopkins last week to have his hearing and ears evaluated. I have referred to his hearing on the blog before, but I have never specifically discussed his condition. It his hard to balance the need for protecting your child's privacy with sharing on a public blog, but I thought I would talk a little about microtia and atresia in case any adoptive parents are interested in knowing more about this special need. Also, we have been asked a lot of questions by curious friends and family, and repeating the same conversation can start to get a little old. So, here is some information about Carter's "little ear"-

1.  The medical name for this condition is unilateral microtia and atresia. Microtia means his outer ear is small and not formed correctly. Atresia means his ear canal is not fully formed. There are varying degrees of this condition. Carter's is right in the middle. Some kids also have smaller facial bones or muscle weakness on the side of their microtia, but he does not. Some kids are born with bilateral microtia.  Sometimes microtia is part of a bigger genetic syndrome, but most of the time it is just an isolated condition that children are born with. 

Waiting for his turn to see the ENT-

2.  We learned last week that Carter's hearing is considered "perfect" in his left ear. In fact, the audiologist could not get over how well he seemed to hear.  Her biggest struggle with his hearing test was that he would not stop talking. "What's that?"  "Where'd it go." "Mommy, look!"  The test that he had done was meant to test his overall hearing based on his visual responses to sound. Which means, that we know his left ear hears perfectly well, and we assume his right ear has hearing loss, but we don't know EXACTLY how well he can hear from the right ear. Because his overall hearing is so good, and his speech is progressing rapidly, we have decided to wait before pursuing more detailed hearing tests like an ABR because those would require him to be sedated.  Eventually, he will need to have this done but there is no rush. The big question that we don't have an answer to yet, is how well his inner ear functions. The inner ear is the part of the ear that processes and transmits sounds to the brain.  There are AMAZING new hearing devices available that actually bypass the outer ear and middle ear and use the bones in the skull to transmit sound to the inner ear. For children with bilateral microtia/atresia, these special hearing aids can transform their lives from being almost completely deaf, to having near perfect hearing. It is amazing to watch as their devices are turned on for the very first time. If you want to have a warm, fuzzy cry session, go to You-tube and search "hearing for the first time."  

So, if Carter hears perfectly well with one ear, why would he ever need one of these hearing devices? The biggest reason would be because he wanted to hear out of both ears. At some point, he is going to get older and will be able to learn and decide for himself what he wants in terms of his ability to hear with both ears. We need two ears to localize sound. Only being able to hear from one ear makes it almost impossible to tell just by listening where a sound is coming from. It is also more difficult to filter sounds in a noisy environment. When he is in school, he will need to sit with his left ear closer to the teacher, etc.  We may decide to try one and see how he likes it, but he would have to wear it on a headband (since he doesn't have an outer ear to anchor it on) and I doubt he would keep it on for longer than a few seconds. 

3. Ear reconstruction surgery is on the horizon but not until he is 6 or 7. Those will be big decisions- especially what kind of surgery and where to go. There are two different approaches and just a few surgeons in the country who perform these types of surgeries. We are going to take our time and do lots of research before we make any decisions about this. Thankfully, we have time. 

Worn out from the long day in Baltimore...



4. Fun fact: if we ever want a modern day success story to give Carter of someone famous who was born with microtia, we can always tell him about Paul Stanley from KISS. Maybe our little music loving baby is destined to be a world famous rock star!

   

Sunday, October 5, 2014

Extravagant Love




 This is extravagant love-


~Not complaining when dinner is late, boring, repetitive, totally disgusting, or not even on the table.  You keep the pizza delivery numbers on speed dial. All I have to say is, “P…?” and you’ve already placed our order. 

(Love is patient.)


~Getting the two big kids ready for school and out the door while keeping the littlest kid quietly entertained so that mommy can get just a few more hours of sleep after her long night spent with sick little ones in the hospital. 

(Love is kind.)


~Watching yet another episode of Outlander, even though you could care less if Claire ever makes it back to the 20th century or if Jamie is or is not her soul mate.

(Love is not self-seeking.)


~Acting shocked and incredulous when I tell you I have lost almost twenty pounds in the last year and then saying, “Well your body has always looked the same to me- perfect.”

(Love keeps no record of wrongs.)


~Putting up with my latest crazy obsession and not pointing out that it is, in fact, a crazy obsession.  Like urban homesteading.  I know, the idea of me milking goats and keeping bees in the back yard made you want to scream….or laugh…or both. 


(Love does not dishonor others.)


Remember how smug we were when we planned our wedding ceremony and declared, “We aren’t using that scripture from 1 Corinthians 13.  Those verses are over used and not really about marriage, anyways.”  We thought we knew better.  Looking back, though, I think we missed the point.  Marriages begin for millions of reasons, but a good marriage is about nothing other than this: trusting in God, holding fast to the One who is our hope, and learning how to love extravagantly. 

None of these things I just listed would have made my list of what defines true love when we were younger and had more energy, more time, less money, and less wounded hearts.  Back when we were these babies...





 I didn’t know that love would look like this and I’m glad I didn’t know, because learning how to love and be loved are lessons meant to be learned along the way- especially love that grows from grace.  

This is my secret- you have always been my touchstone to grace.  During those awful, miserable, almost too much to handle years, when I was angry with God for all the things He hadn’t done and all the ways He hadn’t saved me from myself, I even told you the scariest secret of all: that I had lost my faith all together.  I thought you would be angry, but you stayed calm, let me wrestle with the darkness of doubt, and held tightly to Jesus for both of us until I found the answers I needed.  Giving your wife room to doubt, room to change, and room to grow-now that is love in its most extravagant form.  It sounds silly, but it is true: grace brought me to you, and time and time again, you have brought me back to grace.  



“Trust steadily in God, hope unswervingly, love extravagantly.
 And the best of the three is love.”
1 Corinthians 13:13 (MSG)