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Advent and Dravet Syndrome

November 12, 2015 by Lauren Leave a Comment

Originally posted on Dec 15, 2013

This morning I watched Shelby try to put on her own sock.  There are two ways I could have responded to this.  I could have grieved (and trust me – there are many things I have grieved and continue to grieve about Shelby’s condition) over the reminder that my 13 year old cannot dress herself, or I could choose to find joy in watching her attempt something she has never tried before.  Picture a toddler holding a sock in one hand and lifting his foot to it and expecting it to go on just by brushing the sock over the top of the foot.  Over and over again.  It’s cute, right?  It makes you giggle.  My teenaged daughter was just as cute to me.  And I giggled.  Is it funny that Shelby can’t perform the most basic functions of self-care?  No.  But we have learned through the years to celebrate the little things.  Without the ability to find joy there, it would be a sad existence.  I will never get to see Shelby graduate from college or live independently or get married or have children, but I can relish every new word she learns.  I can savor every picture she colors.  I can celebrate when she almost clears the floor with both feet trying to jump.  Because those little things have become the big things.  The joy is in the day to day.

In so many areas of life, but especially at Christmas, I think we have gotten the big things confused with the little things.  What we spend the most time on during the holiday season is making sure everyone on our list has the perfect gift.  We work ourselves to the point of exhaustion to cook all the most delicious and aesthetically pleasing foods, and fill our homes with Pinterest-worthy decor.  We make sure we attend every party and every festive activity available to us.  Because we have to, right?  All of these “big” things often lead to stress, frustration and discouragement.  And somewhere, in the midst of all that busyness, what is really “big” becomes small.  The whole reason for Christmas gets lost.  We might attend a Christmas Eve service at a local church or take 10 minutes one day to read the story of Jesus’ birth in Luke chapter 2, but if we are honest; Christ’s coming takes a back seat to all these activities.  I wonder…if we made Jesus the most important thing about the season, would all those other things be nearly as important?  Would getting a card to someone we haven’t seen in 10 years seem trivial? Would spending too much money on extravagant gifts seem like an unwise use of our resources?  Would Christmas mean something totally different for you and your family?  Every year articles are published about “simplifying” the holidays.  Without a heart change, that seems impossible.  But if we allow Jesus to take the top spot in our hearts, I think the “small” things would start to organically become the “big” things.  God’s great gift to us – His Son – is THE Joy to the World.  Choose that Joy.  Choose Him.
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Are You Parenting the Right Way?

November 12, 2015 by Lauren Leave a Comment

Posted by Lauren Sparks on October 30, 2013 at 8:50 AM Delete 
I just finished reading Brene Brown’s chapter on Wholehearted Parenting in the book Daring Greatly.  So…much…to…think…about.  What parent has not asked themselves the question from my title?  Or some variation of it?  I mean, you get three parents in a room together and you have 4 opinions on everything from discipline to encouragement, what you should let your child eat and how your angel should be educated.  And so called “parenting experts”?  I don’t think they exist (and not in the same way the ROUSs didn’t exist in the fire swamp).  Since every child is soooo different, how could there possibly be an expert in how to parent them all?  The scary truth is that there is no such thing as perfect parenting and there are no guarantees.  Deep down, we all know this truth and it causes us to constantly second guess ourselves.  Do I have the right restrictions on electronics?  Should we go all organic?  Are the family rules too lax?  Does she have enough chores?  Am I being too strict?  And these are some of the easier questions we ask ourselves.  As a parent of a child with Dravet Syndrome, I add these questions to the mix:  Do the benefits of this anti-seizure drug outweight the awful side effects?  Am I appropriately walking the line between acceptance and hope?  (Challenging her to learn and grow while accepting her as she is)  When should rescue meds me administered?  What activities would be beneficial to her?  And so on and so on and so on.

Since there are so many ways to parent and – in my non-expert opinion – no one right way, I think we should change the main question we are asking ourselves.  Instead of trying to figure out, “Am I parenting the right way?”, I think we should shift our focus to “Am I the adult I want my child to grow up to be?”  Whew.  I just stepped on my own toes.  This thought train is both freeing to me, and more challenging because it requires consistency on my part.  Here is how Mrs. Brown describes it:  “The space between our practiced values (what we are actually doing, thinking, and feeling) and our aspirational values (what we want to do, think and feel) is the value gap, or what I call ‘the disengagement divide’.”  Here is an example.  Do you go out to a fast food restaurant and order chicken strips and fries while pulling out your child’s steamed veggies and organic juice from your bag?  Do you long for your child to have an attitude of gratitude, understand the value of money and not constantly expect new things – and yet you don’t curb your spending and give into impulse buying whenever you feel like it? (Yes, that is an example from my life.)  Do you encourage your child to participate in sports and be active, yet they never see you exercise?  Do as I say, not as I do parenting does not work.

Part of good parenting is letting go of the dreams you have for your child and letting them create their own.  I have decided that it is most important to me for my kids to be like Christ.  I am letting go of the desire for my kids to be straight A students, star athletes, popular, or artistically talented.  Although there is nothing wrong with any of those things, they take a back seat to being Christlike.  So I have to work on my value gap.  For my kids to be Christlike, they must see Christ in me.  And can we all agree to support each other as parents and not shame each other about what movies we let our kids see or whether we use cloth or disposable diapers?

P.S.  If you didn’t get the ROUS reference above, run to find the movie “Princess Bride” and watch it with your family.  

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About Me

I love Jesus, my husband and caffeine. The order of these can change depending on how tired I am. When my two daughters, stepson, and 4 grandchildren get to be too much, I practice yoga. God graciously allows me to share our adventures, victories and flub-ups from my laptop. May He be glorified here.
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