Why We Say What We Say...

Someone asked me recently why we say "It's how God made you" to Will.   We've been asked if teaching our children that "Jesus loves them" might make them question a loving God who can allow children to be born with disabilities.  Actually, we're asked this quite a bit.  We've also had people try to warn us that this may make them angry at God someday.  


Quite frankly, if he wants to get angry at God someday, I think he will, regardless of what we say or don't say.


Also quite frankly, I can't predict my child's response to God as they get older.  I can pray for a particular response and outcome but that is between my child and God ultimately.


And even more, God can handle anger.  (See:  David in the Psalms.)


He created our emotions and I'm confident He can handle them just fine, without my assistance.


So why do we say that to either of our children, both with obvious physical differences or disabilities?  Are we somehow setting them up for anger at God?  Are we setting them for confused theology?  Should we just leave God out of the deal?


I don't really know and I can't predict the future.


Here's what I do know.


When we were pregnant with Will and we learned he would have some major medical issues and obvious physical differences, this was an issue we confronted early on.  As I studied so many complications with my baby, I also was studying so many scriptures about what God says about a baby in the womb. (See Psalm 139 and Jer 1 and even Luke 1)


And we also discussed how we would teach our children and raise our children - if they didn't have any known medical conditions.  Would we tell our child that Jesus loved them?   Of course we would!  Would we tell our child that God made them?  Would we tell Sunday school teachers or preschool teachers to skip over our child when they do their unit on "God made me" and highlight each child to be the child of the week and teach about the parts of the body and how we are all special?  Should our child not be included in that lesson?  Of course not!


It seems so simplistic, doesn't it?


I never hesitated to think that I would tell a child that God made them.  So why would I treat my own child any differently, simply because he has a physical difference?


We determined that we wanted to raise our child as much as possible in a "normal" way and that this truth applied to all children.  We wouldn't somehow avoid telling our child this in an effort to avoid potential room for future anger and bitterness.  We believed all children were made by God and our child was no exception.


And we also dealt with the question of how we would have responded had our child been diagnosed later with a disability.  Does a parent who teaches their child "God made you" or "Jesus loves you" because they seem typical suddenly change their mantra if the child is diagnosed at age 5 with a disability?  Do they suddenly turn quiet and stop telling their child they are made by a loving God?


We determined that if our child was born "typical" but we discovered later that he had a disability, we wouldn't suddenly change what we believe to be truth - that he remains created by a loving God.


He is not an accident.  He is made with intention and purpose.


And because at heart I'm a research junkie, I then questioned every single parent I could find with a child with a difference and asked them what they told their child.  A few stuck to the phrase, "it's how you were born" but for the most part, most said that for their small child, a simple "It's how God made you" worked.  


A ten year old is going to ask for more in depth answers I'm sure but for a little kid, this has worked.


And ultimately, here's the deal.


I don't get to know all the details.  My little human brain which with each pregnancy has lost more brain cells (does mommy brain ever go away?!) can not fully grasp our God.  


Job 11:7-8 says,
 “Can you fathom the mysteries of God?
   Can you probe the limits of the Almighty?
They are higher than the heavens above—what can you do?
   They are deeper than the depths below—what can you know?"


I can't fully fathom His mysteries and I'm not about to place limits on Him.  I don't understand the science or medicine behind our situation.  (Neither do many of our nations' top medical minds.)  But I don't have to either.


I don't know why God chose our family for this unique road.  I don't know why my children have such obvious challenges, and in some cases, face greater challenges than others will ever know.  


I don't know why we get to experience such depth of pain and height of joy.  


Sometimes, I often think that we are the lucky ones.  We are the ones who see scripture lived out as we are forced to see our own human weaknesses, our own inadequacies.  We are aware of our need for God and our dependence on Him.  And our children are incredible judges of character.  Their little characters are being refined in ways I could have never imagined.


I know that in John 9, Jesus tells his disciples that a man's disability has purpose  - to bring glory to God.  I believe He values our response to life's challenges far more than we realize.  I believe He wants us to choose joy.  I believe He wants us to find ways to praise Him and to bring Him glory through what others believe should bring us down.


I don't know why my children were born with differences.  I don't know that I will ever fully understand.  And I'm not sure it even matters - my response to it is what matters.  


I do know that I wouldn't change them.  And I won't shield them from the truth out of fear.  He made them.  He loves them.


Having a differently formed body doesn't signify that He loves them less or that He made only people who are "typically" formed.  


I don't understand His mysteries.  But I do know that He fiercely, fiercely loves my children and He takes pride in His creations.  I suppose that is where faith enters the picture.  I believe Scripture that tells me He forms each of us in the womb.  I know enough of His character to know He loves us and He wants the best for us, He can be trusted, He is consistent and faithful, He is full of mercy and grace.  And I know too that He is to be feared and He is to be trusted.  My human mind may never comprehend Him fully or His ways - but I can trust Him, even on the hard days and the painful moments where my soul cries out "why."  Somewhere, in the middle there, where the grayness of His mysteriousness meets the clarity of what I know, is where we often find ourselves.


So, yes, we say "Jesus loves you."  We say, "God made you" to our children... just like we would to any other child on this planet.

In a Single Moment

It was 4 years ago last week. (Sidenote- While editing this, R looked over my shoulder & said it wasn't four years ago.  I reminded him it was, in fact.  And then he said, "Golly we've aged.")

 I woke up on a Wednesday morning, happily, blissfully, naively pregnant.  I was nearly 30 weeks pregnant with Will - although we were going to be surprised by his gender so I didn't know it was a Will.  I don't remember what I did that morning but since I didn't have children yet, I probably slept in, and took a leisurely shower.  I probably watched a morning news show instead of PBS.  I know I didn't watch PBS.  I probably remembered to eat breakfast and even put on make up and brush my hair and my teeth all before leaving the house.

I got dressed.  I remember exactly what I was wearing that day.

I got the phone call.  A sweet nurse at my OB's office called to ask if I could come in.  I was standing to the side of the dining room table when she called.  They were testing out a new 3D ultrasound machine and needed a pregnant woman to try it out on.  She knew I was done teaching for the summer and hoped I was available.  

God knew we needed time to prepare.  A few weeks earlier and I would have been too busy finishing up the school year and watching my seniors graduate.  A few weeks later and we wouldn't have been unable to adequately test and prepare for the birth or to have fully prepared our hearts.  The timing was perfect.

I was so excited.  3D ultrasounds weren't routine and since nothing about my pregnancy was out of the ordinary I had only had the usual couple of ultrasounds.

I called R and he was excited too.  In fact, he left work to be there (Thanks, God, for clearing his schedule that day.)

I called two of my best friends, J & E, both pregnant too.

I called my mom who was in Alaska.

We went in for our ultrasound and I remember exactly who was in that room (my ob was gone so it was 3 other doctors I had no relationship with and our nurse.)  I remember exactly what they asked us and their faces as they went from trying out a machine to studying what was going on with my baby.  I remember their questions.  I remember how they asked me about the dream I had had just two nights before - vividly I dreamed about a hand difference though I have never heard of that and had no reason to suspect it.  I remember the tears and confusion.  I remember questions about the baby's head and brain and ability to survive.  I remember the nurse, one of our favorites, with tears in her eyes.  I remember everyone walking out of the room and just sitting there, crying and lost with R by my side, himself lost.  We felt slammed and alone.

I remember walking out of the office crying.  And it reminded me of the day I miscarried our first baby at 11 weeks pregnant and that awful feeling as I grieved walking through the waiting room full of happy, smiling pregnant women.  There should be a back door for those who are grieving, those who are in shock.

There were no answers that day.

There was little hope in that dark room.

I remember calling my mom in Alaska.

We called my inlaws and my sister in law brought dinner over.  I don't remember what I ate but I remember eating without an appetite.  I ate because it was one of the few ways I felt I could take care of my baby.  Three years later I did the same for Ellie.

I remember watching a sitcom while we ate - anything to numb ourselves.

I remember sending out an email begging friends to pray but asking them not to call us - we simply couldn't handle the influx of calls.  They respected our wishes and got down on their knees.

I remember talking to a friend who assured me she just knew the doctors were wrong - they messed up all the time, she said.

I tried to hope but there were three doctors that day.  And there was my dream.  And as a mommy I just knew.

Two days later, we were in a perinatologist' office and she was jumping to conclusions and presenting us with terrifying diagnoses.  (She was wrong and later her office apologized for her unprofessional behavior.)

We cried a lot.  We couldn't sleep.  We held each other through long nights with my big belly in our bed.

We read out loud to our baby - Psalm 139 - every single night.  He would know he is loved and fearfully and wonderfully made. I sang his lullaby loudly.

I wrote this blog post a few days later.

A week later, July 5, and we were in Dallas seeing specialists and having my first fetal MRI.

Finally, our new perinatologist came up with a diagnosis and a plan for his birth.

And we began to leave the shock behind and move into an understanding of what the world of limb differences would look like.  And we began to get excited as we anticipated the birth of our child.  We began to dream for him - for the joy of what it would be to kiss his hands and feet - exactly as they are.  We dreamed of watching him learn to walk with feet differences and the sheer joy that would bring us.  We imagined holding him and getting to know him.  We wondered a lot.  Would he feed himself?  Would he nurse?  Would he be able to lick an ice cream cone?  Could he hold our hands or high five?  Would he play catch or hit a ball?  Would we be able to navigate the insurance companies and medical bills?  Should we move to a more accessible home?  Would other kids accept him?  So many unknowns.

What we couldn't grasp is what God was going to do with us and to us.  What we couldn't begin to fathom was the humbling experience of watching a miracle every single day - of watching tens of thousands of miracles unfold before our eyes.  

That moment changed everything.  It changed all of our relationships and our plans and our dreams.  I put Jeremiah 33:3 in my kitchen where I could see it daily.

Call to me and I will show you great and unsearchable things you do not know.

In that moment, I began to understand that verse.  

Do you have a day or a moment in time when everything changes?  Is there a time you can pinpoint exactly when nothing will ever be like the moment before?  Our marriage, our dreams, our hopes, our personalities, even our faith as we began to really comprehend what trusting God means, our friendships, our relationships with our families, every single thing changed.

I'm so glad I didn't know at that moment.  Everything changed in one moment.  Beyond my wildest dreams, it's so much better than I ever imagined.

A single moment.  June 20, 2007.  We'll never be who we were on June 19, 2007.  One moment and everything changed.  

How thankful we are.

How about you?  Do you have a moment you reflect on as a turning point - a moment where everything after is like nothing before?