A few days ago, if you had told me it was possible to feel both elated and horrified in the same instant, I may not have believed it. Now I know differently.
If you've been following this blog at all, you'll know that my son, Myles, has a pretty serious developmental delay related to eating. Even now at 21 months, he weighs about 20 pounds. Over the past year or so we've been working to get him to eat enough each day to begin to gain some weight, learn to eat solid food rather than the puree that we have to feed him and to learn to feed himself - all with only minimal success.
Myles has seen doctors and specialists. He has been tested for every physical condition and abnormality. He has been evaluated by developmental specialists, occupational therapists, speech pathologists and pediatric gastroenterologists, still with no real diagnosis. All we have really known is that our child, despite our best efforts doesn't eat, doesn't like to eat and will not eat even when we know he's hungry. It is sometimes nearly impossible to coax him to eat enough each day to allow him to maintain his weight, more less gain a few ounces.
This has been my life of late. And it has been without a doubt the most difficult thing I have ever, ever had to deal with. I truly believe that everything we encounter in our lives is put in front of us to teach us something and I know exactly what I am supposed to be learning from this: I am meant to learn that there are things over which I have no control, no matter how hard I try.
I have beaten myself against this wall again and again until I am bloody and broken. I have experienced some of the darkest times of my life in the past 21 months - a time that by all rights should be the happiest. Through all of it my best hope, my lifeline has been that eventually we will have a diagnosis, find out what is wrong with Myles so we can go about the business of beginning to fix it. And it just hasn't happened.
After everything our last chance at finding some answers was in an evaluation from a feeding specialist this week. This was what I had been hoping for from the very beginning and we've been on a waiting list to see her for months. Our appointment was on Monday.
This was it, I thought. A behavioral therapist with expertise in feeding issues. This person would ask me questions, learn Myles' history then watch him "eat". I was sure that after this session we would finally have some answers and a recommendation for some therapy that would put us on the road to normalcy.
I was to bring a few things Myles likes to eat and a few things he won't eat at all. For the things he likes, I chose Goldfish crackers, strawberries and dried cranberries, pretty much the two staples of his solid food diet, things he's been eating for months and months. As for the things he doesn't eat, Jeff and I discussed it and chose soy hot dogs and cheese - things we've been offering him and trying to get him to eat for the same amount of time with absolutely no success.
Our appointment was at 1pm and I wanted Myles to be hungry so at least the appointment wouldn't be a total bust. We showed up a few minutes before one. The therapist took Myles' medical and feeding history, questions I've answered so many times now I could do it in my sleep. Then we sat down in a small room with a high chair and all the food I brought.
Myles worked his way through the strawberries in record time then started on the crackers and cranberries. Then with a little prompting from the therapist, Myles ate the entire soy dog and a whole piece of cheese. Just like that.
Never in my life have I been so thrilled and so dejected in the same moment.
Of all the times for Myles to buck up and begin to eat like a normal child! I just didn't know what to feel in that instant. I was astounded and happy and then utterly horrified. This woman must think that I've completely made up some eating disorder for my son, like some sort of crazy Munchausen's by Proxy mother, because clearly there was nothing wrong with him. Which of course means that he doesn't qualify for any therapy.
On the other hand, I just witnessed Myles eat cheese! And hot dogs! Holy fucking shit! If you would have told me this would happen three days ago I would have laughed in your face, with no small trace of irony and bitterness.
I know without a doubt that things are going to get better. And it seems that we've exhausted all of our options for getting help to get to that point. But strangely, I feel really good and positive about the future right now.
I'm not going to say anything so stupid and cliche as that I wouldn't trade having a normal healthy child for the knowledge that there are truly things in this world over which I have no control. And I know that Myles hasn't magically been cured either. If I could go back and have a second chance at all of this with a baby who had none of the issues Myles has, I would take it in a heart beat. This has been hard. So. Fucking. Hard.
But what Myles' little command performance on Monday showed me (aside from the fact that he can eat some damn food) is that all of this is a marathon and not a sprint.
And now I think I'm ready to run.