Reflections on Delaney’s 5th Birthday

Reflections on Delaney’s 5th Birthday

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5 years by Delaney Johnson’s mom, Katrina Sliwka

On the morning of Delaney’s 5th birthday I half-jokingly said to my husband, “We deserve an award.” (Humor has sometimes been our only saving grace while learning to live with AHC). But all jokes aside, it is Delaney that deserves the award.

In her five short years, Del has endured more doctor’s appointments, more medical tests, more falls, and more physical pain from AHC episodes and attacks, dystonia, and seizures than most of us will experience in our lifetime. She has watched as friends, and now her younger sister, surpass her in learning to walk, run, jump, talk and dress themselves without a second thought; while Del works each week in physical, occupational, and speech therapies to master these skills considered basic by so many. Delaney has heard her dad and I remind her countless times to “listen to your body and relax” to attempt to manage her AHC symptoms, when all she wants to do is play. She sits each morning as I put on her cumbersome braces with the hope that they will help improve her balance- and still she falls. And each time she falls she gets up…

Delaney gets up and often yells out “I’m okay!” before I even have the chance to ask her. The determination and perseverance Del exudes everyday has allowed me to move through the stages of grief that frequently accompany having a child with special needs. Delaney’s dad and I are not naïve to the challenges that Del and our family will face because of AHC in the next five years. However, witnessing Delaney’s tenacity and spirit these past five years leave us no doubt, as Del would put it, that she will be okay, proving to whomever she meets that she is an AHC champion.

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