A persistent sense of guilt.

After Antosia was born, we experienced many different emotions: happiness, but also pain, joy and despair, fear, and… guilt. I can tell you that of those feelings, happiness, joy, and GUILT certainly remain. Only it is completely different from what it was in the first days and months.

At first, guilt manifested itself in a constant search for the causes of Antosia’s problems. Constantly asking ourselves: why? Should we have done more tests? Maybe watched her diet better? Maybe taken more vitamins, or maybe none at all? Fortunately, we processed this quite quickly and left it behind after a few months. Instead, we decided to take action, and that was all that occupied our minds.

Unfortunately, this guilt returned and hit us with even greater force after the first surgery. When we saw Antonina wheeling out, in pain all over, with two external fixators on her legs after a dozen or so hours of surgery, we felt crushed. Liliana and I never talked about it, but we didn’t have to. Our faces said exactly the same thing. No words were needed. It was our fault. Our decision and our actions had led to our tiny, sweetest little girl suffering, and successive doses of strong pain medication administered directly into her bloodstream were not helping.

It was hard, and the guilt grew with every new complication we encountered during treatment. Contractures, nonunion of the bone that led to a bone graft—meaning another surgery, more wounds, and the same pain all over again. Nearly two hundred hours of grueling rehabilitation, stretching, and the daily cleaning of 26 pin site wounds on Antosia’s legs left a massive scar on our minds.

With this burden, and knowing that Antosia was still not walking, we returned home after 9 months of treatment. And there, unfortunately, another unpleasant surprise awaited us. Added to what we were already carrying on our shoulders was a new kind of guilt. This time, it didn’t originate in our own minds; it was planted there by people around us. Like a weed in fertile soil. It was impossible to fight. I cannot count the sleepless nights spent crying after questions and accusations that we had allowed Antosia to suffer pointlessly. That maybe amputation would have been better… That we had just taken a vacation in Florida at our child’s expense…

All of this eased with Antosia’s first steps, and was almost forgotten with her subsequent achievements.

Now, after another short stage of treatment, different feelings of guilt are resurfacing. We will somehow manage the ones born in our own heads, which concern Antosia’s treatment and her future life. I know Antosia will help us with that. The guilt triggered by people who think we are going to Florida for a vacation will be harder to deal with, but we will manage that too. I think the list of questions below will help us.

Are we in the hands of the best doctor in the world for Antosia’s condition?

Did Dr. Paley choose the best location for his clinic?

Can the sun, a wonderful zoo, and the beach after treatment is over compensate for the pain and suffering endured during therapy?

What should a child remember from grueling treatment: pain, rehabilitation, sadness, failure, and the hardships of reaching a goal, or the closeness of loved ones, a pleasant boat ride, delicious ice cream, and hot sand on the beach where they can build and build?

Is it worth nurturing these good memories in a child’s mind so they willingly continue treatment, which offers a chance at normal functioning and a significant improvement in their quality of life?

If the clinic were in the Alps, would people be jealous that the children get to go sledding and build snowmen?

And most importantly:

Do we feel that we are doing what is best for our Antosia, while not neglecting our other daughters?

P.S. I know we will still have to process many unpleasant situations regarding Antosia’s condition and her treatment, but why does each one hurt so much? I don’t even want to think about what Antosia will have to face…