Don't you hate it when your own advice to others comes back to haunt you? I recently heard one of my oft-recited phrases ringing in my own conscience. "Just when you think you have it all figured out, you don't have it figured out." The truth of those words stared me in the face as I found myself suddenly dealing with a chronic diagnosis in the 3rd of my 3 children.
Our eldest daughter is a trooper. She was just 3 years old when special needs set up residence in our house at her brother's birth. Although she went through the predictable stage of jealousy with the attention her two other siblings receive, I have had the privilege of watching God mold her into an incredible young woman. Selfless, possessing a strong moral compass and the courage of her convictions, I eagerly watch to see how the Lord will use her in adulthood. She is a hard worker and typically, not a complainer. So when recurring stories of joint pain mounted over the past 6 months, I knew something was not right.
As soon as we had recovered from first her younger sister, then her brother being hospitalized early this summer, it was her turn to march in the doctor parade. We began with the pediatrician. When the test results he received weren't optimal, he referred us to a rheumatologist. Now we find ourselves with blurry answers, treating symptoms rather than known diagnoses, a trail of new doctors' appointments, and praying as we wait.
Interestingly, this has ushered us into a new phase of parenting children with special needs. While her brother was just beginning this phase at the age of 13, our eldest child is solidly in it at 16. These are years of taking personal ownership. Parents are not necessarily at liberty to discuss their child's health status with others as they were in their younger years. For instance, our son doesn't necessarily want everyone knowing that he has a bleeding disorder. He needs to be brought into the mix and to be asked if it is okay with him that we share certain facts with others.
When our eldest began this health journey, my first instinct was to let those who care about her know what was going on by building her a Caringbridge page, just as I had for my other children. With her own set of friends, her own social life, and adulthood only a couple of years away, I had to rein myself in. Treating her as the remarkable young woman I know her to be means that I must allow her some level of respect and privacy.
What does treating a teen with dignity look like?
- Ask if you may share your teen's story with others. If so, whom? How much may be shared?
- Engage your teen in the process of sharing. Let them update blogs explaining how they are feeling or sharing their major accomplishments.
- Train and educate your teen on how to assume the roles of self-care and self-advocacy when it comes to the medical system. This means teaching your child to fill out medical forms, how to describe symptoms so a doctor might actually take you seriously, how to push for answers or be firm in preferred methods of treatment.
- Guide your teen through praying over health concerns. As you pray out loud with and for them, they learn how to take their pains and worries to the Lord themselves.
- Allow them to test their own limitations while under the safety of your own roof. If you do not think that your child is going to take some risks in relation to their diagnosis once they leave the house, you are kidding yourself. Why not create the opportunity for them to fail, within reason, while you are still there to help talk them through that risk-taking? Not only will it allow them to spread their wings, but it will also build an increased bond of trust between you.
PRAY: Father, help me to hold my child with an open hand. Holy Spirit, grant my teen the safety of your watchful protection during this transitional phase. Guide me to treat my offspring with the same respect that you want me to give every other human on the face of the planet.