Finding Hope in the Face of What If – A Baby Update

This past weekend we decorated the house.  My husband dragged out the tinsel and garland.  The kids and I adorned the tree with past memories and flickering lights.  The little girls placed our snowmen on the bottom of the stairs.  The holiday season has begun in our home.

 

Our Tiny Blessing

There was something nagging at me, though.  Something that I couldn’t quite shake.  Then it hit me.  It has been almost a year since we welcomed our baby boy into our family with open arms.  Everything about this season of praise and adoration, love and hope, blessings and gratitude remind of this chubby-cheeked little blond haired boy.

 

He is the gift that we didn’t expect until we did.  For weeks we were unsure of which month he would be born.  As God so perfectly ordained, He became our Christmas baby.  A gift from our Father, himself.  The spirit of Christmas has now become entwined with the birth of this tiny little man.

And yet I remember the pain.  It is heartache that outlined 2016.  Grief, disbelief, and fear.  These feelings propelled us toward the finish line which happened to be just days before Christmas morn.

 

The Diagnosis

For those of you who don’t remember, when I was just about 16 weeks along with our littlest blessing, our oldest son’s genetic doctor called to confirm that I carry a rare genetic abnormality. It can potentially cause a genetic condition.  As it turns out, we have a 50/50 chance of passing this genetic condition on to future sons.  This weight crushed me as I waited to find out the gender.  Surely, it’s a girl.  I thought as I lay on the ultrasound table.  Peeking at the big screen TV we could all see very clearly, this one is a boy.

 

The rollercoaster continued as I wrestled with God.  I wrestled with the enemy.  And even though I fought off my own fears, I’m forever thankful for the Godly friends who came alongside me seeing my pain yet revealing their faith through the Word of God.

 

I love all my children – it doesn’t matter if they have autism, a genetic condition, or another ailment.  I love them.  But I would be lying if I didn’t say that I long for them to be healthy.  I see how my oldest son struggles, even more so as he grows.  His disability is heartbreaking.  For our biggest boy, every.single.thing – it’s a challenge – sometimes an agonizing challenge.  I had to cling to hope as I faced the realization that our newest blessing might also face a life of struggling to walk, to talk, and to learn.

So we marched toward our goal, which happened to be the week of Christmas.  We grasped the hope that we could hold.  God created him for a purpose.  Just like you and I are created this way.  There are no mistakes in God’s kingdom.  He knit him together.  My body, my family – we were the vessel that God used to bring forth this small and perfect gift into our world.

 

Our Baby Update

Now 10 months have gone by.  The first few were filled with small worries here and there.  We declined testing for this genetic condition because the testing wouldn’t – couldn’t– change the outcome.  There is no medical treatment.  There is nothing to be done.  So we watched.  We waited.

 

Every Milestone

I held my breath as I waited for him to roll.  Panicked, I looked to my husband. He isn’t rolling – why – why isn’t he? I said.  My husband, perplexed, pointed at our rolling, silly baby showing off on his little floor mat. It seemed that the moment I voiced my fear, the fears were relieved.

 

As the months rushed forth baby began not only meeting his developmental milestones but beating all of our other kids in theirs.  He stood first.  Then he crawled even faster.  He clapped.   And laughed.  With a grin, he waves.  He gobbles up table food.  Oh, and he says “bye-bye”.  He climbs.  And blows kisses.

 

At his 9 month checkup, our doctor did an extra autism assessment because of the history of autism in our family.  He met every single one of his milestones – including the developmental speech and social skills checklist.

The Truth about Our Strength

The truth is – we won’t be out of the woods until baby boy is at least two years old.  According to information we’ve read and what our doctor has told us,

“Patients with CNKSR2 encephalopathy have some mild, yet non-specific developmental delay until the epilepsy starts at the age of 2 years. At this point, patients have ESES and regression of speech. However, in contrast to other patients with ESES, the course of the regression leads to overall stagnation of development and complete loss of speech that is not regained afterwards.” (Source)

This held true for our oldest son, so we believe that not experiencing delays in the first year is a very good sign.

 

I decided sometime last Fall, prior to baby’s birth, that no matter what – even if he is born with a genetic condition – we’ve got this – because…. God.

 

God brought us to this place.  He brought us this bundle of joy.  And even still, every once in a while, I’m stopped right in my tracks.  I realize that if I had chosen, I might have missed out on him. My sweet Christmas blessing.  What if I depended on logic or reason to not bring forth this life?  I’m humbled before the Great Almighty who supplies all our needs, as it says in Philippians 4:19.

 

So, this Thanksgiving, amidst the twinkling lights and signs of cheer, I’m thankful that God, He’s the perfect LOVE that casts out all of our fears. (1 John 4:18)  He shows us how to love, and He shows us it’s ok to hope in Him.

 

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