At the State of the Union address Tuesday night, Rep. Zoe Lofgren (D-Calif.) brought Shaima Swileh, a 21-year-old Yemeni national, as her guest. In December, Swileh was granted a waiver to travel from Egypt to the U.S. to be with her only child, 2-year-old Abdullah Hassan, a U.S. citizen, who was dying from complications of hypomyelination, a genetic degenerative brain disease.
Swileh petitioned the State Department to arrive sooner but was denied because of President Donald Trump’s Muslim ban. It wasn’t until the Sacramento Valley office of the Council on American-Islamic Relations filed a lawsuit and organized a public campaign, and Lofgren and other members of Congress brought added pressure, that a waiver was granted. Abdullah died days after his mother’s arrival.
Rep. Jerry McNerney (D-Calif.) brought Swileh’s husband, Ali, a 23-year-old American citizen who works for a delivery service, as his guest to the State of the Union. The couple live in the Bay Area.
HuffPost spoke with Swileh on Tuesday before the State of the Union. She has not spoken to any other news outlets since the death of her son.
This interview was translated from Arabic and condensed and edited for clarity.
What do you want the American people to know about your situation?
I want them to know that, in the beginning, I underwent an extraordinarily difficult time, in order to bring Aboody [a nickname for Abdullah] to America without me. It was so difficult. I do not think any mother can prepare for such a thing. His illnesses, toward the end, and his death was traumatizing to us all. I did not expect for him to die. I didn’t expect for his condition to reach this stage.
I just want people to know that this was so difficult. There are a lot of people who are stuck in many countries, Yemenis. This ban is hard for all of us.
When the ban came down, there was this huge sadness. Most people who want to come to America, they don’t want to cause or start trouble.
Most people are in need of America. They need American treatment, work or education. I don’t wish upon anyone, upon any mother, to go through what I went through.
What do you think most Americans misunderstand about Muslims or this ban?
Most people think that Muslims are terrorists, or whatnot. Most people don’t like Muslims. But Islam is something else than what people think. It’s entirely something else. Islam is about a religion of forgiveness, a religion for peace and compassion. It’s not about problems or starting wars. And [those wars] have little to do with Islam, but more to do with the government.
I hope that perception changes, that perception people have about Muslims and Arabs and Yemenis, Syrians or Egyptians and so forth.
What do you want people to know about your son Abdullah and what you’ve had to go through?
What can I say about Aboody?
Well, in the beginning, when I went for my first interview at the American Embassy in Egypt in January 2017, I had so much hope that I would be able to obtain a visa to enter the U.S. with my son for his treatment. So I would be there with him during his treatment. We were too late.
[The ban that went into effect in January 2017 halted Swileh’s visa application to travel to the U.S. with her son and be with her husband. Swileh was offered the opportunity to send her son ahead to the U.S. without her, but she thought she would qualify for a waiver due to Abdullah’s urgent medical condition. So she waited.]
In Egypt, there were so many doctors that told me that [my son’s] condition was critical and that there weren’t available the resources to treat him. There was this one female doctor who told me about going to Germany or America. She said these countries are good. They were surprised that my son, who had American citizenship ― that I couldn’t go with him.
You had hope that you would actually obtain a visa and come with him?
I did, at first. But then I lost all hope after President Trump signed the ban into law, despite the fact they said there would be waivers. I kept trying. I kept calling the embassy and explained that I have a child who was critically ill and that I wanted to go with my son. No one cared, as if they didn’t believe that I had an ill son. So I would bring them the medical documents that documented his poor health and his illness.
So I accepted. I agreed to let him go to the United States without me in hopes that he would be cured. I did not expect for his condition to worsen.
Aboody was so deeply attached to me. He didn’t want to go anywhere. He wouldn’t accept being with anyone. He was always with me.
When he got to the U.S. without me, I, as a mother, I felt that my son was upset. When he heard my voice over the phone, he would look around and look for me and try to find me and see where I was. But when he couldn’t find me, he would always cry. It was really difficult.
Aboody, whenever he was with me, he would laugh. Even when he was so ill. He couldn’t stand. He couldn’t walk. He couldn’t flip himself over in bed.
He had this laugh that would instantly make a person cheerful. If you were upset, just take one look at Aboody, that was all it took. It was a laugh that would make you forget all the sadness in the world. He had such a beautiful soul.
He was so sweet, like honey.
Even when I finally came to America, I didn’t expect to see my son in such conditions. I tried so hard. I kept telling him, wake up, Aboody, wake up. But there was no hope.
How much time were you able to spend with him here?
Eight days. Thank God for everything.
When you were in Egypt and found out that you got the visa, did you have different expectations, that your situation would somehow be better when you got here?
Honestly, no. There were doctors who would call me from the hospital and told me that his condition was critical. I became pessimistic. I thought, he was going to die any day, at any moment now. But when I got the visa, I became happy. I was going to see him, even if it was for the last time.
Do you think if you got the visa earlier, things would have been different?
Yes. I mean, this is my opinion. If I had received the visa the first time around, maybe Aboody would have been cured and he wouldn’t have died.
Anything you’d like to add?
I thank the people who all helped me and those who stood with me in the face of the American government to allow me to enter the U.S. and see my son. I’m indebted to them.
I just want to say, please, help these kind of cases of people who need the help. There are so many stranded people who need help, in Djibouti or elsewhere. At bare minimum, help those who need medical assistance. There isn’t a single American who would agree to live in a country where they have a sick child and their spouse is in another country. No one would want to live like this, American or any other nationality. Families must be together during times of happiness and during times of illnesses.
Language has been amended to more precisely describe the series of events that led to Swileh’s waiver.