To the Parents of a Chronically Ill Child

If you’re anything like me, you want people to tell you the truth. You want that specialist to come into the room and tell you exactly what is going on, what they know, what they don’t and how much they’re guessing with the latest prescribed medication, therapy or procedure. I wanted to write you to tell you the truth based on my experience. I want to prepare you that it’s not all good news. But, I also want to encourage you that there is life inside this experience that can be hopeful, rewarding and aspirational.

First, the bad news. I want to tell you that you are not alone, but there will be times when you can’t help but feel that way. I want to tell you that it gets better, but there is a chance it won’t. I want to tell you that you are strong enough, but there is a good possibility that at some point your strength will be used up and won’t be something you can rely on. I want to tell you that your love for your child will carry you through all of your trials, but at some point you will find yourself looking in a mirror and thinking that your life is over. In spite of all of this, do not give up on yourself, your family and especially your child with a chronic illness.

Other relevant stories:
• Things You Can’t Do with Epilepsy
• Is Epilepsy an Autoimmune Disease
• Can Epilepsy Kill You

According to Focus for Health, 27% of children in the United States live with some type of chronic health condition. That means 27% of U.S. parents are raising kids with conditions ranging from ADHD to Spina Bifida. If you’re reading this, there is a good chance you, like me, are or were part of this statistic. So statistically, we’re certainly not alone. But within that range of conditions there are variations and anomalies, and in spite of any diagnosis the illness our kids live with is likely as unique experientially as each child.

Our daughter has been sick for over 10 years. Her primarily illness is an unspecified auto immune process. In addition, she has secondary diagnosis for lupus, psychosis and dysautonomia. Her primary symptoms are uncontrolled seizures, auditory hallucinations and psychosis. Because of her mix of neurological and psychiatric symptoms, finding treatment or therapy programs has been (to date) impossible. Most programs focus on one or the other and neither is open to taking on the risk of both. In addition, any services we’ve sought out, such as respite services, have also been hard to come by due to concerns around the range of issues they might be faced with. Years ago when interviewing a home and hospital teacher who would work with her, after spending some time along with my daughter the teacher ran out and reported back that we really couldn’t be helped. That is one of many stories of dead ends and frustrations as we’ve tried to care for our daughter over the years.

You will be alone if you stay alone. If you don’t tell your story to anyone, no one will know what your need. We’ve been very vocal with our friends on social media and in person, and very honest about what our life is like. The support we’ve received through our transparency has at times kept us from drowning under the weight of our circumstances.

When the normal pathways have not been open, we’ve experienced surprising support from individuals who have stepped in courageously to help out. For example after the first teacher ran for the hills, we contacted the program supervisor and explained the details of our circumstances. She was reasonable, kind and truly interested in helping kids like our daughter. She sent an older, more mature, lifetime educator to us. He continued to work with our daughter through high school and young adulthood. He has become a dear friend over the years. Even though at times we’d have multiple month gaps due to hospitalization, he would come back and they’d pick up where they left off.

At some point, you will face despair and be tempted to give up on your circumstances, yourself or those around you. There is at times a powerful urge to find someone to blame. In spite of our best efforts, we’ve fallen to those urges and temptations. We are not perfect people. What we are, though, is committed. If we don’t fight for our marriage, our family and our kids, what is worth fighting for? Having a chronically ill child — particularly after they’ve not been able to achieve all of the rights of passage in education, dating, career and so on — forces you to re-evaluate your priorities and what life is about for you and your child. What we’ve found is that it has also forced us to consider what love is. Unconditional love is essential when you acknowledge that you have no control over any of the conditions. Reimagining our circumstances solely in this light is the only way we’ve been able to make sense of the world around us. And love is not something to be hoarded or rationed. It works best in community, where you live outside your solitude in the bright, beautiful world of messy relationships and uncomfortable occasions. In community, where our circumstances are known, we can find identity outside of our challenges. We can be part of other people’s lives and offer help and encouragement to them, taking the focus off our problems and giving us purpose beyond our challenges.

Dear friends, I hope something in this letter helps you. Having a chronically ill child is a difficult life for your entire family; give each other grace and support. Don’t pressure yourself to be something you’re not. Open your life up to community and share your story. Don’t give up on your spouse, your family or your chronically ill child. And count every single blessing you experience along the way.