Lauren Sparks

This has been a rough week.  Shelby has decided that sleep is over rated.  This poses a problem for me because I would rate sleep as one of my all-time favorites.  This problem is not really new.  Most children with Dravet Syndrome have sleep issues of some sort.  Knowing this history with Shelby’s condition, I was very skeptical when her neurologist suggested sending us to a sleep specialist.  We had tried this once before, but decided to give it another go.  Tired times call for drastic measures.  After several painful months of diligent training, we (the parental units) felt like we were winning the battle.  She was no longer sleeping in our bed and we were usually only having to put her back to bed once or twice a night.  That is good sleep for us.  But…the good sleep seems to be over.  For no obvious reason that I can see, Shelby has completely regressed.  For days now we have been returning her to her bed 8-12 times a night.  This regression shouldn’t surprise me.  We have seen it with other skills such as speech and ambulatory control.  When you are dealing with a neurologic condition, there is really no understanding what is happening in the patient’s brain or why.  It has been heartbreaking at times to watch hard-won achievements simply slip away.

My husband and I decided we needed to return to the early stages of her sleep training to try to regain some traction.  For us, this means locking the door to her bedroom to remind her that she is to stay in her room when it is dark outside.  To make sure she is safe, Chuck and I take turns sleeping on the couch outside her room so that we can hear when she is up – and knocking on the door – and fussing.  *Yawn*  Sorry.  Getting sleepy just thinking about it.  Anyway, I wanted to show you what Shelby does when she can’t get out of her room:

This picture doesn’t quite do the pile justice.  This is the entire contents of Shelby’s chest of drawers emptied onto her bed.  I can’t tell you how defeated I felt walking into this for the 3rd morning in a row.  I drew a spiritual correlation between this disaster and the sin in my life (anything to put off cleaning it up).  Everyday this week I have cleaned up this mess to make Shelby’s bed usable again.  And then, while not surprised, I am disappointed every morning to again find her space in the exact same condition.  In the same way, I daily bring my messed up sins to God and ask Him to forgive me.  Because He is a good and merciful God, He cleans me up and makes me usable for His purposes again.  But He is so much more patient with me than I am with Shelby.  In my humanity, it is so hard for me to understand how the Father is not sick to death of my repeated messes.  He cleans up the same messes over and over again – willingly, lovingly, graciously.

This is the current picture of Shelby’s chest of drawers:

Everything is neat and tidy as a pin.  But I made some changes.  Some say the definition of insanity is doing the same thing over and over again and expecting a different outcome.  Although I am sinful, I don’t consider myself insane – yet.  So since Shelby has established a pattern this week that I don’t wish to continue, all the drawers from her dresser have been moved to MY bedroom under lock and key.  She may not sleep any better tonight, but I will definitely feel better in the morning.

“Search me, O God, and know my heart; Try me and know my anxious thoughts; And see if there be any hurtful way in me, and lead me in the everlasting way.”  Psalm 139:23-24

“I feel like you expect me to be perfect and you expect NOTHING from Shelby.”  Whoa.  This was the crescendo of an argument my husband and I were having with our typical child – in which she threw her special needs sibling in our faces.  *Sigh*  Hard to know how to respond to that.  While it’s not true that we expect NOTHING from Shelby, who is developmentally 2 years old, what we accept as appropriate behavior and contribution from her is very different from Allie, who is a very bright 11 year old.  This conversation (can you still call it that when voices are raised?) led me to really examine the parental expectations – and therefore, pride – my husband and I have for each of our children.

Chandler, my 25 year old step-son, did not live under our roof the majority of his rearing years.  Because of this is was difficult to establish clear-cut expectations on many things and we often made concessions for the fact that he divided his time between the rules of two households.  Now that he is grown and on his own, what his dad and I expect is irrelevant.  He is a self-motivated medical school student who is also a husband and dad to 3 kids (soon to be 4).   He also graduated in the top 10% of his class at Air Force officer training school this summer.  I am surprised that I haven’t had to sew all the buttons back onto Chuck’s shirts anytime he boasts in Chandler’s accomplishments.  We couldn’t be more proud of the young man he is becoming.  Allie, although at a challenging pre-adolescent age, is beautiful, smart, outgoing, Jesus-loving, and gifted at so many things.  And then there is Shelby.  Although she is constantly learning, she has not really hit any new developmental milestones in the last 10 years.  A tough place to be.  And to Allie’s point, Shelby is not really expected to contribute much to the daily operation of our household.  And yet, I could not be more proud of who she is.  How can this be?

I came across a Focus on the Family article suggesting that the kind of pride a mom or dad feels for a child is really an expression of the delight the parent feels in the child.  God the Father indulged in it Himself when He spoke during Jesus’ baptism saying, “You are My beloved Son; in You I am well pleased” (Luke 3:22).  Although this deep sense of satisfaction CAN be attributed to a child’s accomplishments, it can also be attributed to appreciation for who the child is.  Psychology Today says that our culture’s message is that results matter above all else.  And results do matter.  You are lying if you say they don’t.  If good performance was of no consequence, we wouldn’t care that Chandler is in medical school, or that Allie shines on a stage and makes good grades.  Those things matter, but they should not be of most importance.  I have often told Allie that we expect much of her because she is capable of much.  But I have also told her that on the day she was born, I could not have been more proud of her – and she had accomplished absolutely nothing.  

I am proud of the accomplishments of all my children.  On any given day, that could be an “A” in a class for an 11 year old, or going “tee tee” in the potty for my 16 year old.  But more importantly, I delight in who God made each of them to be.  Although all 3 of them frustrate and disappoint me at times, I cannot be around any of them very long without praising God for the fearful and wonderful ways they are made.  And my prayer is that, at the end of the day, my delight in them will be what they remember.  Based on this first sentence of this article, I’ve got some work to do.