Monday, April 13, 2015

The Straw that Broke Me...

In the past month or two we've been told that all four children might have mitochondrial disease.  That Pip might have cerebral palsy.  Abel may well be on the autism spectrum.

Big things.  Hard things.  And through it all, there have been some tears, but no break downs.  We've been told we look good.  I honestly haven't known why, apart from the grace of God.

Then the straw came.  The one that broke me.  Yesterday I remembered to check the mail, since I'd forgotten the day before.  In it was the letter from the charter school Mercy attends.  The one that was supposed to say that Gilead was accepted for kindergarten for the 2015-2016 school year.  Only it didn't.  Instead it said he was on the waiting list.

I knew it was a lottery.  However, siblings get drawn before anyone else, and though there are no guarantees, it's pretty much an implied guarantee.  I lost it.  You see, giving up homeschooling was hard for me.  So hard.  It wasn't easy for me to trust God with letting go of Mercy during school hours.  And now, Gilead doesn't have a place in the school that has been such a blessing to us in a really difficult season.  

I took a long nap.  Then I cried.  And once the dam broke, I couldn't plug it back up again.  The river flowed until I fell asleep.  I woke up to tend to a sick Pip at 12:30am, then cried myself to sleep again.

God's grace isn't any less there than it was when I was "standing strong."  But it's different on days like today.  Today I feel the uncertainty of the future.  The pain.  The heartache.  Not knowing where Gilead will go to school.  When Pip will walk.  If Abel is "on the spectrum."  What any of our futures hold.

And I'm so thankful that God doesn't turn away from the tears, but wipes them for me. That we now attend a church in which the pastor wants the congregation to be okay with Abel's meltdowns.  That we are surrounded by gracious people.

Because today, I'm broken, and I can't guarantee when I'll be back together again.

*As an addendum, I was able to get in touch with the school the following day.  After spending the day working on it, they discovered that we were the victims of the one lottery mistake of the year.  One child with the same last name, and a first name just one letter off from Mercy's also entered the lottery, and her letter and Gilead's were inadvertently switched.  He was, indeed, drawn for enrollment this upcoming year.


Wednesday, April 8, 2015

Hope Blooms

We just celebrated Resurrection Sunday.  Easter Sunday.  The hope we have in our risen Savior.  This year I've found particular significance in the holiday.  Nothing about the significance of Christ's work for us has changed, but our lives have.

We've had a lot thrown at us.  A lot of labels.  A lot of potential diagnoses.  A lot of maybes and what ifs regarding our children.

And yet, the reality is this.  These are the same beautiful children we've always had.  The ones that God gave us.  Created in his image. Cherished by him.  Christ died and rose for Mercy, Gilead, Abel, and Pip.  Not for mitochondrial depletion, autism spectrum disorder, sensory processing disorder, FPIES, or mild cerebral palsy.  Those things, or the possibility of those things, are not who they are.

I still cry a lot.  I'm exhausted and confused.  I don't know how to be the best mom to them.  This is hard!  But hope blooms.  It blooms when the child who struggles with empathy pats his baby brother and says "it's okay, we're almost home" when he's crying in the car.  It blooms when Pip takes a whole three ounces from the bottle.  It blooms when Gilead works up the nerve and strength to go down a tunnel slide.

 We have been so loved by the body of Christ.  Our children know that Jesus loves them.  They have no concept that he might not.  

So we keep living each day in hope.  I administer meds.  We go to therapy.  Teach bodies to move properly, go to appointments, and teach little people that Jesus loves them.  That they are created in the image of God--feeding tubes, motor delays, and all.  They are no less a reflection of Him.

Morning medication ritual.

And this year we celebrate our hope in the risen Christ.  We don't deny that life is hard.  It is hard.  But Christ is risen, and He is here.  He is here.  He's alive.  And there's so much hope.