When Your Child Has to Travel Thousands of Miles for Eating Disorder Treatment
I hit a brick wall today, not literally, but figuratively. It was a mental brick wall some may liken to a mental meltdown. Today, marked the 70th day my 15-year-old son has been thousands of miles away from home in a residential treatment facility in Denver for a relapse from his eating disorder. Unfortunately, for adolescent males the options for residential treatment programs are slim. My husband and I sent him back to the center which he had stayed in two years prior. I would like to say it was a tough choice, but when faced with seeing your child stare life or death in the face, there really isn’t a choice to be made at all.
It seems strange to me today of all days I had my breakdown. Overall, I had been coping relatively well with his absence. I had settled into the uncomfortable quiet a house minus one teenage boy starts to possess. The reality of the impact an eating disorder has on a family hit me in the face like a gale force wind.
The day kicked off with us being told by my son’s doctor our insurance company has decided to no longer pay for his residential treatment. They feel based on their medical criteria, he is ready for the next step. As I hear these words I am infuriated, mad and worried. It is so frustrating to think they know what’s in the best interest of my son. The insurance company has decided it is time for him to transition or step down into a 12-hour day, partial, outpatient, treatment program. While this step will be necessary for his ultimate success, taking him out of residential programming now, when he is so close to the finish line, could be catastrophic.
This is the world we live when insurance is paying the bill. This phenomenon is not limited to eating disorders. It can be seen with any major illness. When it is your child it becomes scary. Unconscionable decisions such as this get made every day. To think they would come this far and pay close to $100,000 dollars and then not be willing to pay for the last 12 days of treatment is inconceivable. They would rather take the risk and cut off the funding, betting against the medical professional’s advice. Yet, if your child is released too soon, the revolving door syndrome begins when another costly relapse can occur. Ultimately, they could pay double for a patient’s treatment. Unfortunately, that is not how the actuaries calculate their costs and how the insurance companies make their decisions. They have boxes they check and criteria they use that can defy logic.
For a family, having a child away in residential treatment is stressful, isolating and scary. You do it however, because it literally can be a matter of life or death for an patient with anorexia. In our case, our son collapsed on his bedroom floor starving, dehydrated with low blood pressure. He was dying of his disease right before our eyes. We had been doing everything we could to prevent this very episode but, an eating disorder is sneaky and it hides in ways you cannot imagine. In our case our son hid his illness in plain sight. We rushed him to a children’s hospital for nutritional refeeding and stabilization. That is when the insurance clock began ticking. It’s maddening to think a family would endure all that time with a child away from their home and when the hour glass runs out, the system cuts them off. The insurance company paying the tab tells a family with the patient is done. What is most alarming is the toll it takes on the patient. To not allow them to continue their programing seems inhumane.
As I comprehend all of this, my mind shifts and I begin to face the stark reality the world has gone on without my son in it. His friends are living carefree and moving ahead in their lives as he is fighting for his. I got a message today that it was time to pre-register for his 2016/2017 classes for his sophomore year in high school. The school has been amazing and he is being tutored daily in the facility where he resides. Suddenly, I fear he will be so far behind only to never catch up. It is a common concern you hear from other parents. The mind of a healing, weight restoring, child with anorexia is not as clear and logical to focus on studies compared to when they are in a healthy state. The thought of holding him back and repeating ninth grade is sobering.
Finally, as if all of that is not enough for my brain to comprehend, I layer on the worry of the toll this eating disorder is taking on my family. We have two sons. My oldest is a senior in high school. This past Christmas was one that he will always remember as a sad time when his brother was away and his parents left him to go see his brother in Denver. We wanted him to join us to see his brother, but it was too sad for him and he felt staying back with family was a safer choice. It was just too difficult to see his brother in treatment at Christmas. For choices such as this, there are no right or wrong answers. We simply respected his decision and tried to make his Christmas special, regardless of the pervasive sadness looming in our home.
As a parent, your job is to be the peacemaker and try and find the happiness when there is that void. Days are spent pretending, ensuring life goes on as usual for the other family members while quietly and secretly you weep and pray your life as you know it will eventually return. The mundane, day-to-day living in a home during this time is lonely and arduous. The family must exist. Life must go on as you mark time and count days until your loved one is to return again.
By the end of day 70, I have regained composure and I come back to reality. What has sustained me this far on our journey comes back to the forefront of my mind. I get back to reminding myself about the gratitude I have. I know that may sound strange to some, but is sustains me during this tough period. I am grateful in spite of our challenges. Even after 70 hard days, the gift at the end is that my precious son will be weight restored and healthy again.
Yes, I hit the brick wall today, but I came out on the other side still fighting. My next milestone is to count out the next 56 days. That is how many days are left until I get my child home in good health and in the recovery process again. I cannot to hug him and tell him how proud of him I am and how much I love him. Until that time…
The Mighty is asking the following: Parents of children with mental illnesses – tell us a story about working within the mental health system. What barriers of treatment have you experienced? What’s a change in the system that could help your child? Check out our Submit a Story page for more about our submission guidelines.