Lauren Sparks

The Sparks Notes

Emmanuel

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Originally published Oct 19, 2011

My Papa had a heart attack over the weekend.  I was over 4 hours away – and so were my sisters.  That was hard.  I got the phone call while sitting in a boat in the middle of the lake.  Talk about feeling helpless to get where you really want to be!  I was understandably worried about my dad, but I think I was just as concerned for my mom as my dad underwent a heart cath to find the blockage, which would immediately be fixed.  I sat in that boat bawling, thinking “what if that was Chuck and I was sitting there all by myself?”  But my mom didn’t really need me.  She is a Christ follower – so she’s never alone.  Emmanuel is a name for God we don’t hear much except around Christmas time, but it’s a comforting name.  It means, “God with us”.  And He always is.  My mom sang praise songs to herself during the entire procedure and really felt the presence of God.  He comforted her (a primary job of the Holy Spirit) and kept her calm.  Had I been where I wanted to be, she would have missed that sweet fellowship and confirmation of Providence’s care.
When Shelby was a toddler, I was terrified for Chuck to go out of town and leave me alone with her.  In those days, every time she had a seizure we ended up in the ER because of the duration and severity.  Looking back, how I wish I had called upon my Savior and allowed Him to wrap his arms around me the way my mom did.  I am fortunate to have her as an example to follow.  I hope the next time a crisis comes (and in this fallen world, it will), I will reach out for what I know is already there – my Emmanuel.  The ever-present, all-powerful God of the universe.
“God is our refuge and strength, an ever-present help in trouble.”  Psalm 46:1


ESY

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Originally published March 3, 2012

Unless you are the parent of a special needs child or a teacher, the title initials probably don’t mean anything to you.  ESY stands for Extended School Year – the Texas’ Special Education equivalent of summer school.  ESY ended this week for 2011, so I’ve been thinking about it’s role in Shelby’s learning.  In order for a child to qualify for ESY, teachers must show proof that the student would regress in skills without classroom time for the entire summer.  The purpose of ESY is somewhat comical to me.  It is made abundantly clear that the one and only goal of summer classes is to maintain skills the child already has.  Nothing new will be taught.  Makes me laugh every time I think about it.
The first year Shelby was awarded ESY, she went to school for 3 hours a day, 4 days a week for 8 weeks of summer break.  Not bad.  I still had time with her, she still had plenty of break time, but she also had a good amount of structured classroom time.  Last summer, her instruction was reduced to 3 days a week.  We weren’t too pleased with that, but were still grateful.  This summer, largely due to budget cuts, Shelby got 2 days a week, 3 hours a day for 8 weeks.  And 30-40 minutes of her day were spent eating lunch.  What?  It hardly seemed worth it to send her.  But we dutifully did.
Now this may sound like complaining to you (ok I guess it is if I’m honest), but I am really so appreciative of everything our school does to accommodate Shelby and help her get the most out of her education.  Shelby started to lag behind developmentally at 18 months of age.  I was one stressed out mom.  I started going to seminars on how to teach her.  I checked out videos and books.  I only looked at toys that were “developmentally appropriate”.  And my anxiety grew as I worked to “catch her up”.  I believe it was possible and that it was MY responsibility.  I ceased to be “mom” and became “educator”.  Now, I do believe that teaching is one of the primary responsibilities of parents, but I could not balance that with nurturing and being a wife.  I did not feel like I could sit and cuddle, watch a TV show with her or just goof off.  I felt guilty for any time I spent cleaning my house or maintaining our home.  It was not a healthy time for me and our family suffered.  It wasn’t until she entered the school system at the age of 3 that I could fully exhale and relax.  I then had partners in Shelby’s education – professionals with real training!  I could pass off that job and balance a little teaching with a lot of cuddling and homemaking.  Whew!  And I have been grateful for every moment, every therapy, every program that Shelby has had the privilege of participating in.  We have a few weeks left of summer to sweat through, but when school starts, I will be one of those moms rejoicing.  Not because someone else will care for my child all day, but because wonderful, qualified professionals will invest in her.  And she loves it.  I found a poem today that adequately expresses how I feel about Shelby’s education called “The Two Sculptors” by Cleo V. Swarat
I dreamed I stood in a studio and watched two sculptors there. The clay they used was a young child’s mind and they fashioned it with care.  One was a teacher:  the tools she used were books and music and art.  One was a parent with a guiding hand and gentle loving heart.  And when at last their work was done, they were proud of what they had wrought.  For the things they had worked into the child could never be sold or bought!  And each agreed she would have failed if she had worked alone.  For behind the parent stood the school, and behind the teacher stood the home!

Mortality

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Originally published on July 24, 2011

I guess you can tell by the title that I have been thinking about some heavy things this weekend.  First, there was the tragedy in Norway.  Then, a school mate of mine (a year younger) died of a stroke.  A stroke!  Lastly, I witnessed a man at the gym step off of a treadmill and collapse on Friday.  I am still struggling with what I saw.  He was completely unresponsive.  I ran for gym staff to call 911.  The paramedics arrived, performed CPR and even shocked his heart.  When they finally decided to transport him to the hospital, there was still no improvement.  They were unable to get a consistent heart beat.  Perhaps the saddest part of this event was that his wife was standing right there watching the whole thing.  She was pacing and wailing and frantically trying to get in touch with her daughter by phone.  My heart wept for her.  I don’t know whether the gentleman survived or not, but it shook me up – even though he was a stranger to me.  I don’t know that I have ever witnessed anything like that except when it was my own child.  And in that situation, I had so much adrenaline going that I really don’t think I experienced it.  

One thing I found interesting is the sociology of a situation like that.  One of my students walked up and said, “I can’t stand it when something like this happens and people just stand around staring like jerks.”  And he went about his way.  I overheard someone else say, “I can’t believe people that can just continue their workouts.”  Same situation.  Two different people having two completely different opinions about what is compassionate or even appropriate.  
I’m not a big worry-wart, but I used to be. God in his great mercy took that away from me when He gave me Shelby.  He knew I could not survive her condition with that kind of fear.  SUDEP (Sudden Unexplained Death in Epilepsy) is more common than those struggling with a chronic seizure disorder would like to think about.  And now, with current technology and online Dravet Support groups, I  hear almost immediately about the deaths of Dravet patients and can keep a running yearly total in my head.  BUT, in order to have a functional family life, I have to find a way to pray – and let those things go.  I have to rest in God’s love, protection and timing.  Chuck and I have made many decisions in Shelby’s life to handle things differently than many of our Tiger parent friends (parents of a child with Dravet Syndrome).  I don’t pretend to know that our way is the best way.  And believe me, I have second guessed more decisions than I can count.  But for the well being of our entire family, we have chosen to avoid some of the more extreme versions of monitoring Shelby.  It may seem simplistic, but we take the best care of her we can, make decisions based on research and professional opinion, pray, and trust God to take care of the rest.  Trusting in God at this level involves accepting that God’s plan for our daughter may not be what we would choose.  It certainly hasn’t been up to this point.  But God does have a plan for her.  And having faith in that plan is the only thing that gives us peace.  
Jesus said:  “Peace I leave with you; My peace I give to you; not as the world gives do I give to you.  Do not let your heart be troubled, nor let it be fearful.”  John 14:27

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