|Photo credit – Tatiana T|
I hear my daughter laughing. Not just giggling – belly laughing so hard that I got up to look in on her in the next room. She is sitting on an ottoman in front of the television watching her favorite show – Mickey Mouse Clubhouse. As she watches, she clutches a stuffed Minnie Mouse doll and a slightly larger Mickey. She loves them. Doesn’t like to put them down even to eat dinner or go to the bath room. She and her toy friends sit, and watch and laugh. It is an episode that she has seen more times than I can count. She even recites some of the words. But it doesn’t matter to her. She is just about as happy as I have ever seen her.
I smile at the sight of Shelby enjoying herself and I have two thoughts: “This is so sweet,” and “this is so sad.” Can I think both of those things about the same scene? I realize the dichotomy of this, but I suppose my heart is divided. Shelby is 17 years old. A senior in high school. While her classmates are entertained by Instagram, dating and driving; my daughter plays with the toys of a toddler.
A lump is forming in the back of my throat and tears brim past my lashes as I sit in the reality of everything Dravet Syndome has stolen from her. She cannot dress herself, or read a book, or interact appropriately enough to have real friendships. She is not able to run or jump or make change for a dollar. But as she is firmly entrenched in what is her last official year of high school, I find myself, more than ever, mourning for the things that will never be. There is no college to look forward to. She will never drive or have a job. There will be no boy to fall in love with her. No wedding to plan. She will never have children, and she will always be in the care of someone else – even long after I’m gone. And I didn’t realize how hard it would be to put all this into words until I just did.
And yet…a part of me loves that she will always be my baby. When my other children have had enough, Shelby lets me hug and kiss her until she is covered in my lip gloss. And even though I can barely support her, she still loves to sit in my lap. Her naivete’ will protect her from ever being heartbroken or feeling betrayed. She will never sit under the burden of bad choices or suffer guilt and shame. She will never truly know the worry or stress that life inevitably brings.
At the developmental age of 21 months, Shelby’s innocence is arguably the most attractive thing about her. I think that’s one of the reasons Jesus said, “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.” Matthew 18:3 NIV Jesus’ disciples had been arguing (or at least wondering) amongst themselves who would have the highest position with Him when He sat on His throne again in heaven. The fact that the Messiah even dignified such arrogance with a response shows His great love and mercy for us. He explained that to follow Him we must all set aside selfish ambition and pride, striving instead to exhibit the purity of a child. This happens initially when we admit that we are nothing without Jesus and ask Him to save us from our inadequacy. When we allow Him to empty us of our conceit and misguided self-promotion, Jesus fills us with His sufficiency.
Without the weight of sin separating her from God, I believe my Shelby fellowships with Him on a level I will never understand this side of heaven. And after 17 years with her, I feel like the lessons she teaches me with her life just keep coming. Lessons on joy and having a simple faith. She is a walking, breathing seminar on how sweet it is to live unencumbered by sin. After all, in Luke 18 Jesus told us of young children “…the kingdom of God belongs to such as these.” NIV
Helen Farrar says
Hi. Just wanted to connect with you and say what a great blog, which I fully concur with. My daughter Naomi is 14 years old and has Dravet Syndrome. I, too, am a committed Christian. I, too, have a heart to write and am attempting a book. Helen x
Lauren Sparks says
Hi Helen! So great to connect with you here. I am so curious to know what your book is about!