Parent, you may not have a child with a genetic illness, but the same sort of thought that crept into my son's head can creep into your child's head, no matter the diagnosis. Even children who are non-verbal or have cognitive delays can surprise us with the things they are analyzing in their own minds. Unless we are are prepared with the truth of Scripture in verses like Ephesians 2:10, or Psalm 139:13-14, or John 9:3, all of the other reassurances we can give will fall flat.
Every human, no matter their shape, size, color, gifts, or limitations, needs to know that they are deeply loved and valued by their Creator. No one and nothing else can fill that void. This is why it is critical that we speak this truth into our kids' lives from even their earliest days.
Additionally, suddenly realizing how the world may seem them can be confusing and upsetting to our sons and daughters. Our children know that they are NOT defined by their diagnoses. Why would the world demean or devalue them in such ways? As we affirm their infinite worth as proclaimed by the Lord, we can also show them that God uniquely positions them to speak the truth to the world.
As I reminded my son, "Now you know why I am always say, 'He has hemophilia, but hemophilia doesn't have him.'"
We parents also need to be prepared to tell people a thousand different things about our amazing kids that make them who they are. For instance, I love to tell people of my youngest daughter's affinity for animals, my eldest daughter's giftedness in writing, my son's savvy at strategic card games. Getting to know a person rather than just their diagnosis spreads awareness, wisdom, and acceptance to an ignorant world.
As this piece is published today, my son is at hemophilia camp for his first year as a CIT (Counselor In Training). My husband and I are so proud! He has come so far, not only battling a rare bleeding disorder, but also pushing back against anxiety and PTSD (Post-Traumatic Stress Disorder) from the thousands of IV needles he's endured over a lifetime. He is making strides with infusing himself every-other-day at home. He is ready to give back to those who are younger than him. He is developing personal responsibility and new habits of volunteerism. His character is growing as he marches toward adulthood.
Yes, son, there are people who devalue you, but NOT your Maker, nor your parents. And those who would disregard your life have NO clue what they would be missing!
PRAY: Father, strengthen and remind us to be respecters of all life. Even if we disagree with others or find ourselves offended by others, help us to remember that they are of infinite value to You. Help us to treat them as such. In turn, make us bold in proclaiming the worth of those we love, teaching and strengthening them to do the same. May we all reflect Your glorious light and love in this dark world.
~ Barb Dittrich
Romans 8:38 Marvin Vincent, Word Studies. The literal translation is “standing in sight.”