I have been blessed with four amazingly talented children. They are all smart, determined, motivated, and kind. They all played sports including hockey, gymnastics, soccer, baseball, and figure skating. I am afraid our society puts too much value on the things our kids do and I think our kids do it to themselves as well. You and I know our worth extends beyond the things we do. The essence of who we are is found deep inside of us. It is found in the fact that God created us simply because He loves us and wants us! It means our kids matter… "just because.”
Yet in this world a healthy, active child still gains his or her identity by the things they excel in. Maybe it's sports or the achievement of good grades. They soak in the attention when we attend one of their performances, take pictures, and praise them for their hard work and discipline. But the chronically ill child, when unable to continue in the activities which once were loved, may suffer an identity crisis similar to the death of a loved one. See, we are constantly forming our identities in relation to friends and loved ones. When one of them dies, we are forced to discover or re-invent ourselves again without the presence of this person in our lives. The process can be shocking and take time to figure out. Similarly, when a sick child can no longer continue in a beloved sport or when an illness robs him or her of the ability to concentrate, learn, and excel in school, a new identity must be created.
When my daughter could no longer figure skate because of physical setbacks causing a regression in skills, she had trouble answering the question, “So, what do you do?” The answer used to be, “Well, I’m a figure skater.” The mocking beast of chronic illness laughs and taunts, “Who are you now?!” In the case of the death of a loved one, even healthy individuals need months, perhaps years, to create this new identity. For the sick ones, symptoms (especially fatigue) make that process even more challenging and lengthen this timeline of self-discovery.
It is our job, EDS Mama, to relay the message to all our children that they matter and are valuable! This worth is not tied up in the things that they do or in titles, but in the essence of who they are and always will be. Let your voice audibly speak this truth to your children so in the end, they believe it for themselves. Luke 12:6-7 NIV reads, “Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.”