The Decision

 

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Joshua at my mom’s house celebrating his recent 16th birthday…

When my kids were little it felt like I made a million decisions a day for them…what to feed them, what to dress them in, whether to go to the park or stay home. That number slid down to a few a day as my kids got older. Now that my two oldest are teenagers, the decisions are fewer still. But, often those few decisions have an outsize impact. Some decisions are easy—like deciding my oldest son had to attend a public university which awarded him a partial scholarship, rather than one of the pricey private schools he got into. This was just fine with him. He’s getting an amazing education at University of Massachusetts, Amherst (my alma mater) and won’t be crushed by debt when he graduates (even though it’s still pricey, being out of state for us, it’s not $70,000). But sometimes, the decision is gut-wrenching. Sometimes as a parent you need to decide that your child’s battle is too big for you to handle—it’s out of the bounds of what you can solve with your child living at home. Then, you need to make the decision to send your  child away to get better. You need to say goodbye, even if it’s just for a short time, so you can give your child a chance to grow into a healthy and happy adult…

That’s where we are now. On New Year’s Eve day my son, Joshua, was lying on the couch, weak and lightheaded. He didn’t look right to me, so I made him weigh himself. If you read Hungry; Hungry Part 2; The Power of Kindness; and/or The Power of Kindness Part 2, you know why I made Joshua weigh himself. He’s been battling an eating disorder for more than half his life and has been in outpatient treatment for the past two years. He has Avoidant Restrictive Food Intake Disorder (ARFID), brought on by anxiety, rather than a desire to be thin. He knows he’s too thin. He wants to eat more, and he wants to weigh more, but he just can’t. If you read Hungry, you know that I’m intimately familiar with this type of disorder, as I battled the same thing when I was twenty-two to twenty-four years old.

Now that you have the background, back to my insistence that Joshua weigh himself. I panicked that he had lost weight and that’s why he was so listless and pale. I didn’t want to be right, I really didn’t, but I was. Joshua weighed ninety-six pounds at just over 5’8″. I immediately texted his nutritionist to ask if I should take him to the hospital. She said that if I couldn’t get him to eat within the hour, I should take him just to be safe. I got him to eat a small corned beef sandwich, so we narrowly avoided a trip to the emergency room. But, I spoke with his pediatrician as soon as she was back from the holiday weekend.

The pediatrician instructed me to scrap the nutritionist’s plan to wait until January 31st to enroll Joshua in an inpatient eating disorder treatment program and start investigating facilities. She referred us to a program in Virginia. Luckily, we don’t have to travel that far. Joshua’s nutritionist suggested a brand new facility in the Hamptons (about an hour away from us). When I visited the program’s website, I was filled with both relief and apprehension—an oxymoron if ever there was one.

The facility looked breathtakingly beautiful, a brick mansion up the street from the water with rooms that look like they leaped off the pages of a home magazine. The staff seemed kind and competent. But, and there always seems to be a but when you’re trying to help your child overcome the toughest of obstacles, I did not know if they’d take our insurance. When my husband called our insurance company to find in-network treatment programs, the person he spoke with gave him the names of two general hospitals and a mental health hospital. None were geared toward only adolescents. The center Joshua is attending only accepts eight residents at a time, aged ten to eighteen. I called the headquarters in California and was reassured by a very nice patient coordinator that they accept all major insurance plans. Somehow, I missed that broadcast on every page of their website. I guess I was so nervous that I had found the perfect place and we wouldn’t be able to afford it, that I saw only the beautiful spaces and kind faces.

Still, I didn’t know for sure if our insurance would cover it (less a sizable deductible, but one we’d end up paying over the course of the year anyway), nor did I know if Joshua would even be accepted into the program. I spent close to six hours filling out intake forms and then waited nervously for the call (full disclosure—it would take a “normal” person a fraction of the time to fill out the forms; as a writer I provided more detail than they likely ever wanted or needed…). This all while my sister was in the hospital for ten days recovering from emergency surgery. To say the 2016 holiday season sucked would be an understatement…

But then, a ray of hope… Our insurance was approved and Joshua was accepted into the in-patient program. Apprehension turned to pure relief after touring the facility. Due to obvious privacy concerns for the current residents, I can share neither what I saw during the tour nor what we were told—in fact, I decided to remove even the name of the facility from this essay on my final read-through. I will only say that as we got into the car, Joshua confided that his whole perspective about in-patient treatment had changed. He said that he felt much more comfortable. The kindness of the clinicians and the tranquil, stunningly gorgeous setting really eased his fear…and mine too.

It is still hard knowing that he’ll be away for about six weeks. We’ll see him during that stretch for therapy sessions, family meals and visiting time, but it will be hard not having him at home. It doesn’t help that we’ll be dropping him off the day after we drop my oldest son, Drew, off at school for the spring semester. If you read Letting Go Part 2, you know how hard it was for me to endure the sudden quiet after dropping Drew off in September. Now it will be magnified with only one child at home. And knowing that I couldn’t help Joshua and now have to send him away is harder still. But, if I need to send him somewhere to get help, at least I know that he’s in the best possible place for him.

It also helps that the decision isn’t mine to make, not really. Once Joshua’s doctor said that he needs to be in an inpatient setting, I knew I had no choice. Of course, I could say, “No, I want him at home. I want to keep trying.” But, why would I ever do that? Why would I risk the harm that could come to my child if he doesn’t get the help he needs? So, I agreed and started researching programs as soon as I hung up the phone. It was scary, to be sure. The possibility of sending Joshua to an inpatient treatment program has been hanging over our heads since I took him to his nutritionist for the first time in 2015. Back then, we were told that if he didn’t gain weight in five weeks he would be sent to a boys’ eating disorder treatment center in Wisconsin. That was all the spark he needed to gain weight. Our New York Rangers announcer friend, John Giannone, gave Joshua a boost when he told him that hockey players get through even tougher stuff and he could do it no problem. Joshua loved hearing that and gained over twenty pounds during the course of the next year. When he finally got medical clearance to hit the ice and play hockey at just over one hundred pounds last February, we thought we were home free…no inpatient treatment in his future.

But then…he slipped. It happens, of course. His weight dipped to the ninety-six pounds I mentioned, and he had grown about two inches. He has become skin and bones. I feel awful that one part of me is relieved that he’ll be out of the house and in an inpatient setting with round-the-clock care. I feel like I should want to keep him here with us no matter what, but there have been moments that I really was afraid I’d lose him. The stress of thinking that your child could starve himself to death while you simply stood idly by is far worse than sending him away for six weeks. So, I’ll pack him up and we’ll drive him the hour out to the Hamptons. I’ll send him with a stack of sweatpants and t-shirts; some jeans and polos; his favorite shampoo and body wash and C.O. Bigelow Elixir Blue body spray; the Axe hair putty he can’t live without; maybe a framed photo of our dogs—all the things that will remind him of home while he gets better.

And I know that someday, we’ll all look back on this and say, “This was the turning point. This was when things got better.” He’s at sixty percent of his body weight now. One of the benchmarks of success for the program is when he climbs over eighty-five percent of his body weight. I can imagine him filled out and healthy, the color returned to his cheeks. It’s that thought that keeps me going; that will let me hug Joshua goodbye and not burst into tears the moment we get in the car to leave. This is a good thing, and I just need to remember that…

Postscript: I made sure that it was okay with Joshua for me to publish this—he hasn’t told many friends why he’ll be out of school, and I haven’t told many people either. But now, anyone who reads this will find out. He and I both have the same reason for wanting to share this—to help others who may be going through the same thing. If you need advice or wish to know the name of the facility Joshua will be attending, please feel free to reach out to me on Facebook.

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Joshua on my lap as a happy, chubby-cheeked baby…

 

 

 

 

 

 

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2 thoughts on “The Decision

  1. Jill Goldstein says:

    Hi
    My son is in treatment for ARFID , and a friend sent me this article. Would you mind terribly if I asked the name of the facility? Finding the right help was not easy.

    Thanks for sharing your story.

    • stephaniekepke says:

      Hi Jill – Thank you for reaching out. I’m sorry to hear that your son is battling ARFID. This is the website: http://centerfordiscoveryeatingdisorderprogramhamptons.com/ I don’t know where you live, but there are 55 locations run by the same company. The phone number on the site is the main number for admissions in California. I liked this location, because it’s brand new and is closer to us than the others. Sorry I didn’t reply earlier – we were dropping my son off. Best of luck to you and your son.

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