How Dividing and Conquering Benefits Our Family’s Health
When you have a child with special needs, part of the grieving process is acceptance. I don’t mean accepting your child’s diagnosis of Rett syndrome. I’m talking about accepting your new normal, and accepting the decisions you have to make about what is best for your family. This includes the choices you must make to preserve your own mental, emotional, and physical health as a parent or caregiver.
It took several years for me to accept that bringing my 12-year-old daughter, Cammy, to every single gathering wasn’t sustainable, good for her, or what she wanted. My husband, Billy, and I desperately want our children to be part of everything, but when Cammy is happier sitting on a couch and watching a show while the rest of the party interacts, it doesn’t make sense to force it.
Holidays are very difficult for us, as we have to attend gatherings on both sides of the family. I know this can be hard for any family, but having an immunocompromised child who needs a wheelchair and a feeding tube causes our anxiety levels to shoot through the roof. Sometimes, as caregivers, we have to divide and conquer. We have accepted that we must do this to preserve our overall health.
Generally, we divide when Cammy doesn’t feel well. If the event is on Billy’s side, he and our 10-year-old, Ryan, will attend while Cammy and I stay home. If the event is on my side, Ryan and I will go while Billy and Cammy stay home. That way, Ryan can play with her cousins on both sides of the family, and Billy and I can each see our siblings without any concerns or interruptions.
Other times, Billy and I have to divide to protect our physical health. Over the past 12 years, being special needs parents has caused us immense physical strain. When both our backs are on the brink of going out, one of us stays home with Cammy. We can’t be sidelined at the same time when our child requires around-the-clock care and lifting.
We have accepted that these decisions are best for our family of four. We are finally able to divide and conquer without the fear of missing out. We know our families would love to have us all present, but they understand and accept our choices without judgment.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.