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A long road to medicine, and a long road home

I made all her baby food myself. I scoured every market, grocery store, health food store and bodega in our corner of New York City to find organic kale, organic sweet potatoes and organic beets. Spinach, broccoli, berries and apples were a little easier to come by, but I still had to visit several stores to get them all.

I would carve out hours out of my schedule to carefully roast, broil, sauté and steam all the vegetables and fruit, then cool them, pour them all into the blender in small batches, adding filtered water until at the right consistency, then strain those that needed straining, pour the warm food into ice cube trays, cover and freeze.

I would transfer the single-serving-sized cubed into freezer bags labeled with contents and date, and move on to the next item to add to the stockpile.

I bought only organic milk. I only let her have Veggie Booty as a “junky” snack. The occasional cupcake was a nonissue since she’d happily snack on her little bowl of organic broccoli before and after the treat.

I knew that there are so very, very many contaminants that enter our bodies that we cannot control—through air pollution, the toxins that come from furniture, carpeting, paint and bedding, in toiletries and the insecticide the building sprayed throughout the hallways and lobby of our apartment building (though we declined having our own apartment sprayed)—that I figured it was my duty as mother to this precious new creature to eliminate the contaminants I could feasibly control.

Pesticides and growth hormones I could reduce in my little girl’s diet, so why shouldn’t I?

As she grew, I banned artificial colors from our house, especially yellow and red, as much as humanly possible without being a total scrooge (no M&M’s on Christmas?? Impossible.). Also artificial sweetener; I would rather her eat real sugar in moderation than ingest the lab-invented chemical substance that “tastes” such as sugar.

The more natural and close to the earth, the better, was my motto. We raised her (and our other children) vegetarian and taught the importance of knowing and understanding what was in the food one was putting in their body.

I used medicines sparingly, only when clearly necessary, and then only the minimum amount needed to get the job done. So imagine my feelings at the prospect of considering mind-altering medications for my child to be given twice per day, every day, for an unforeseeable amount of time.

I decided to try everything else first. We spent the year in cognitive behavior therapy. I read every book I could get my hands on. I wanted to exhaust all options before resorting to medicine. At the end of the year, it was clear that the therapy could not work without medicine to take down the barriers preventing Bean from moving forward.

Once I knew that I had tried everything, that there was no other choice, no other way to help her, I embraced the idea that medicine could help. If she had diabetes, I would not deny her insulin; and so it is with her TS, OCD, ADHD, IED, and depression—the medicines prescribed will allow the real Bean a chance to shine through … something we’ve sorely missed since the disorders have taken over and hidden her sparkling personality.

I am hoping these medicines will allow her to be who she really is and to not be obscured and controlled by this unfortunate genetic hand she’s been dealt. We’re not there yet, it’s been nine months and we’re still working closely with her neurologist, increasing doses and adding other meds.

And even after we get a good mix, there will be constant tweaking and adjusting and it is certainly not a cure all … the therapy will resume, we’ll continue to modify her diet and work on her executive function skills.

So we’re not there yet by any means. But I’m confident we’ll get there, and I can’t wait to see my little girl again, the one I’ve missed so much, and give her a big hug and tell her, “Welcome Home.”

0 Comments

  1. I completely relate to this post. We had a very similar road toward medication. My daughter did not start using medication for her tics until the age of almost 12, but once it was necessary, it was undeniable. Her misery was more than she could handle, and it was spilling over to all of us. Our home became contentious and unhappy.

    The med that she is on only takes the edge off, but it brought us back to who we all want to be. I still worry about the chemical aspect of it, but for now I know that we have to be able to love and support each other to help both my ticcing daughters.

    • Our neuro said we want to try to take care of about 80%, and work on the other 20% with therapy until eventually less and less medicine will be needed. And taking that edge off is huge! Having an angry, unhappy household takes such a toll on everyone.

  2. After much deliberation, research and opinion seeking, I started my daughter on medicine this week. I understand it takes awhile for the meds to work, but in the meantime, I just see her nap without benefit of the meds working yet. It is heartwrenching.

    • Jen…do mind my asking what she is on? We’re still new to the whole medicine thing, and I’m interested to find out what others are taking….

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