Note: To follow the story it is recommended that you first read the previous parts, or from part 2 and forward, where several of the characters mentioned are introduced. Back to Table of contents
Ajje asks me again if we can go back to my place, but I’ve not been to his family's apartment yet and I beg him to take me.
"-I know you prefer to be at home, so why haven't we been yet?" My excitement amuses him and he agrees but needs to ask his parents first.
"-Having people over is kind of a big deal for them." He says.
They are renting an apartment in a suburb on the south side of Stockholm and as far as I can remember I’ve never been there.
“-There's not much to see” Ajje laughs.
“-Everyone who lives there are poor. It’s not as nice as where you live.”
His uncle takes us there in the van and parks in the garage below the apartment blocks and we cram ourselves into a small, dirty, worn out elevator.
When we stop on Ajje's floor an old lady greets us in kurdish and kisses him over and over on the cheeks and shakes my hand. When she disappears into the elevator he explains that she wanted to welcome him home. She is so senile that there is no point in explaining to her that he is only there for the day.
Ajje’s door is next to the elevator, and his uncle and his family lives at the end of the corridor.
I didn’t know that they lived so close, but I’m thinking that it must be nice, especially for his mom.
Ajje asks me to knock on the door before we go in, and when we do it’s like entering a different world. The apartment might be old and it reminds me of my grandparents apartment but they have made a big effort in making it theirs. His uncles and cousins with their families and children are there and they are excited to see us. Everyone comes forward and greets me with their names and shakes my hand even though I've met them many times before.
Ajje's father takes both of my hands in his huge warm hands and welcomes me inside the living room while nodding and saying thank you in Swedish over and over again.
I'm not sure why he is thanking me, but I thank him for letting me visit.
If I had expected to be shown around by Ajje and then see his room, maybe spend some time alone with him just hanging out, then I was seriously mistaken. I didn't expect the visit to be formal and I feel bad for not bringing a gift.
The apartment is bigger than I first thought. The walls have a light, cream colored wallpaper but are richly decorated with paintings and photos on every wall. Aliya, Ahmeds wife, is baking since I'm their guest today.
The floors are covered with carpets except in the kitchen and at the entrance and my suspicions are confirmed when Ahmed takes off Ajje's shoes and carries him into the living room and seats him in a sitting chair. It's a huge black leather chair propped with pillows so that he can sit comfortably and not worry about his head dropping. I want to ask him about it, but he just looks at me and signs "OK" a few times until I let the thought go.
They show me around and I can tell that they are very proud of their home -and that they want to show me and tell me about all the items, -and I mean every item; that they have from Turkey and the middle east. Total information overload, but I smile and nod and ask the occasional polite questions. It's not tacky, but there are a lot of different styles and colors; mostly red and gold, the curtains are thick and heavy and there is new furniture mixed with old.
-His dad hesitates to show me Ajje's room because it's not his anymore; his brother and his family sleeps there now since Ajje has been in hospital and at the nursing home for so long. Ajje's cousins takes turns translating and his dad is trying to explain how Ajje and Aram are the most important people in the family.
Their bedrooms are the biggest, and you can't go anywhere without passing the livingroom where Ajje is sitting in the middle. From there, he can see anything that is happening in the apartment, and he can be a part of everything, like he is sitting on a throne.
I understand that if I hadn't been there he would be the center of attention and I can see his niece and his youngest cousins fighting for his attention and affection and who will be the first to help him. His family loves him so much.
For a moment I stop listening and just stand there looking at him. He looks so happy here with his big smile and those tiny wrinkles by his eyes...
They serve tea and cake in the kitchen and we chat in a staggering mix of swedish, kurdish and english, and before I know it, everyone seems to agree that the formal part of my visit is over, and that I can go and spend some time with Ajje.
I feel like I must have passed their test, and I'm relieved.
I sit down on the floor next to his chair because that seems to be what the children do. He asks me a lot of questions; -did I like the apartment, did they show me the photos from their home in Diyarbakir, and did I like the cake?
I answer yes to all these questions and then I ask mine:
"-How come you are sitting here, instead of using your wheelchair?"
"-I don't need to be anywhere else but here right now. If I want to go anywhere, my parents will carry me. They always have. And I want mom to have her carpets because she likes them."
I have to think carefully about this and why it surprises me so much. I don't want to identify Ajje with his wheelchair; but everything here is so unfamiliar to me. When I first met him, I couldn't picture him anywhere but in his hospital bed either. Why would he give up some of his limited freedom?, his wheelchair is the only way for him to get around.
But I understand that he doesn't feel that way, that being helped by his family doesn't limit him, it enables him in a way that the staff at the nursing home could never do, and it makes his connection to his family stronger.
I can't remember the last time me or mom asked each other for help. All she wants is for me to clean my room and sometimes set the table for dinner...
I know that I've let my mind wander again, but it's as if Ajje knows what I'm thinking about.
"-But what about when Aram will need his wheelchair, and what if you want some privacy?"
"-When I come home, I will have my room back: But I don't need to close my door like you do. I need mom to hear me if I need something."
"-I'm sorry that they don't speak enough Swedish. Mom doesn't have many friends to practise with, but we -Aram and me, sometimes speak Swedish with her. But she worries that we will forget our kurdish language, -that’s because she was not allowed to speak it for so long. It's important to her that we speak kurdish."
"-But will you teach me more kurdish?"
"-I would like to. I need to." he says and motions me towards him to hold his hand. But I can only barely reach his fingertips from where I'm sitting, and instead I place my hand below his knee and stroke his thin leg.
We are interrupted by Aram who has brought Ajje some cake and he feeds him the pieces like it's nothing. But watching them, I am reminded that it's not nothing; it's everything.
Again I wonder what kind of circumstances would be required for me to feel this connection with my brother; or anyone in my family. I know I would do anything for them in an emergency, a crisis, but every day?
The Olympic summer games in Atlanta are just starting and it gives us a perfect reason for sleepovers. Ajje doesn't have a new roommate yet because it's been hard to match him with someone since he is prone to infections. Nanos old bed is still free. It's not common for the nursing home to allow people to stay over and definitely not someone who is not family; but there is not a lot that is common about his stay since he is a minor and because he has been there for so long, much much longer than first anticipated.
I'm not sure if my mom even notices me, but I ask if I can stay over and watch the Olympics with him and at least she doesn't protest.
We are excited about the competitions and our medals but we are even more excited about spending time alone, or almost alone. Sometimes the nurses lingers to watch the games with us and to double check that we are ok, that Ajje doesn't get too tired when turning his hours around.
When we are alone we waste no time, we talk a lot and we kiss. I can sit on the edge of his bed and wrap my arm around his or we can hold hands; -but we don't dare to lie down next to each other like we did when I showed him my room, since people can just walk in.
He loves when he can touch my face and my lips, even when it means that I have to hold his hand up like he asks.
He laughs at me when my face turns all red and warm when we kiss too long and he says:
"-You know we shouldn't, Islam does not allow it, nor mom." I know that he's only half joking.
Already on the first evening, he decides to sleep without his shirt on and with only a thin sheet over his legs because it's too warm and humid.
I can't keep my eyes off him, his chest heaving up and down when he breaths, his flat stomach and his small, rotated ribcage.
-It's late at night when I can't help but give in to this warm feeling in my heart: I pretend to be half fall asleep and accidently drop my hand onto his stomach. His skin is warm and perfectly smooth and soft.
When he doesn't say anything I let my hand rest there and I love seeing the contrast between the colors of our skin. He has a tiny string of small dark hairs below his belly button and I feel myself blushing again. I move my hand up and let my index finger trail down his chest bone. I'm still too shy to touch his chest so I caress his neck, his shoulder and his beautiful collarbones. Shyly I place my hand on the wider side of his ribcage and run my hand along the length of it with my fingers slightly spread. I can feel the ribs like small ridges just as well as I can see them.
I'm waiting for him to say something, a protest, but he just looks at me with his big golden eyes. When I slowly lift my hand I'm shivering, and he says assured, but with a low voice:
"-You like me.“
He is not asking. Just observing.
“-Don't let go of me."
Noone has ever said anything like this to me before and my heart stings. I'm not sure if he means this moment, literally, or if he means to not let go of him, ever.
"-Yes I really really like you." I tell him.
He is so sweet, and riding this wave of warmth and comfort I rest my hand on his stomach again.
When we were first getting to know each other and he wanted me to understand his family's history and his kurdish heritage, he often talked about Muhammad and told stories from the Koran. But he rarely talks about how the practises Islam; he has not been to the mosque since he had to go to the hospital, and he doesn’t participate in the prayer, partly because he physically cannot do the salat. I know that his relatives are more religious than his closest family.
But when he tells me in confidence that there has been a conflict between Ahmed and one of their fathers brothers since my visit to their apartment, I feel the same old worry starting to grow inside of me; please please don’t stop me from seeing him!
His uncle has said to Ahmed that their father is weak because of his illness, and that he has to make sure that Ajje doesn’t spend more time with me, and that they don’t approve of me touching him the way I did when I visited and sat next to him and touched his leg.
-It doesn’t matter to their uncle that their parents have accepted me, because it’s not acceptable according to Islam.
Ajje says that according to Islam, he can’t have a relationship with someone from another religion, we can’t touch, and we can’t have sex before marriage.
And the more questions I ask, the clearer it becomes that this is something that has actually bothered him from day one, but that he has not been able to bring up because he has been so conflicted.
I’m not really bothered by the sex part, because I don’t recognise my feelings for him as sexual and I know that I’m far from ready to have sex with anyone, -all I feel is that I long to be close to him, not only physically, and the thought of not seeing him kills me.
When I come close to start crying, he drops the question and tries to assure me that Ahmed is not going to do anything about his uncle's threats.
For Ajje eating is also a big issue. I knew this but didn't understand the extent of it until I stayed with him over night.. It's the first time we spend a full day together and because we have been up so late watching the Olympics he has slept late and skewed his daily schedule and routines.
I'm sitting next to his bed watching tv with the aide on the other side of the bed trying to feed him a sandwich that she cuts into pieces.
He is half lying down half sitting and he is struggling with chewing and swallowing.
It's not just physical: when he has finished and she prepares another bite, he keeps hesitating. He is scared of choking and scared that it will cause problems with his stomach like before and he doesn't like having food put into his mouth so fast. I'm starting to feel bad when I watch them in the corner of my eye because I don't want him to have to feel this way.
The aide is getting more and more frustrated because he is eating too slow, and when she starts sighing, I tell her I'll do it.
I have to repeat myself because she hasn't been listening to either of us, then she thanks me and leaves us.
"-Can you take the ham off please?" He asks.
Of course. The ham is too chewy. -Also, it's pork.
"-They are making you eat pork?"
He moves his eyes and makes his gesture for later.
"-Later?" You want the sandwich later?
"-Sometimes, I meant they do, sometimes. Some of them don't care. Nano would tell them off but it doesn’t help. I’m too tired to fight with them."
I give him some more water and changes his position when he asks, then he finishes his sandwich easily when he can decide the bite sizes and speed for himself.
The next morning Ajje has two sandwiches and the head nurse comes to apologize.
Thats how we spend most of our days: We sleep late, the aides will help him get dressed and such and then I help him with his meals and smaller things throughout the day.
When we can spend this much time together we are reminded again of how backwards we got to know each other, not to mention the whole religion thing, and I love when he comes up with questions and topics that we haven't talked about before.
Most days his parents comes by or they drop his little brother off and we play video games or go down to the cafeteria, unless Ajje is too tired.
On the day of the closing ceremony, Ajje is not even up yet when Aram comes running into his room holding a newspaper. He is not really running, but moving as fast as his Duchenne legs allows him and Ahmed and his wife and their parents are right behind him.
I don't understand what they are saying so I step back and let them finish their conversation. They are very tense but I'm still not sure if it's a good or bad thing.
"-What's happening?" I ask and his mom motions me forward to the bed so that I can read the article in the fold.
"-This is your friend isn't it?" I recognise the name.
The headline says "Fatally ill boy on hunger strike to save parents". There is a big picture of Ayhan; his kurdish friend who also has Duchenne, -and the text goes on: "Boy with muscular dystrophy risks his life in protest after the decision that his parents have to leave Sweden."
I can't read on, I feel sick and I already know what the article is going to say.
Just like Ajje, -his friend already has a residence permit, but the people he relies on for his survival hasn't. He is risking his life so that his parents can be safe in Sweden and because they are the ones who can give him the best care. He has no other choice.
I look up and meet Ajje’s dark eyes; I start my sentence "-I thought his case was supposed to..." But my voice fades at the end of it.
When I let him in, with the blink of a second, I can feel every aching inch of his tired body and my breath falls in with his, shallow, rapid; and my heart starts to race.
I don't know how I do it, but once his presence fills me, I can make our breath and our pulse slow down and I can feel us slowly relax when I assure him that everything is going to be OK.
Both of our eyes are watering and I blink away and take his hand.
They stay for another hour, then everyone but Ahmed and his wife leaves. She takes me outside so that they can be alone. She doesn't speak a lot of Swedish but I think we understand each other when I tell her I'll ask Nano to call their lawyer again, after all he studied law before and plans to take up his studies again in the fall.
I see them off to their car afterwards and Ahmed has a strained look on his face, almost angry.
I don't know what they talked about but Ajje is very tired and quiet when I go back inside and he soon falls asleep. He only wakes up in the evening to have something to drink and then goes to sleep again, this time with his mask and vent on.
I don't sleep well either but the next day I have to go home. It's only 20 minutes away and I know I will see him soon, but after being with him for almost three weeks its so hard to go.
Two days later we go to see Ayhan together. It feels weird because Ajje has asked him to come and visit many times in the last six months but Ayhans health has always prevented him from coming to see him at the nursing home. He wants to show him his support and his uncle drives us to central Stockholm where the hunger strike is taking place.
It's surreal and emotionally draining for everyone and we can't stay for long.
Ayhans story completely explodes in the press and every newspaper writes about it, and the general opinion is that his parents must be allowed to stay.
When one of the papers get a hold of his application and starts unwinding the background: -that the boy lied about who his parents were when he received his residence permit, the camp is split in two; those who thinks he did wrong and that his real parents should not be allowed to stay because of it; -and those who feel that he did the only thing he could to save his family.
While all of this is unfolding, I have to go back to school because the semester is starting.
We don't share any classes, but I could never have done it without Christine who is there to push me in the right direction. I might not be able to make up for the lost time, but I want to do right. I want to do my very best now and worry about the mess I made of the last semester later.
Then on the 13th of August, Pierre Schori, the Swedish Migration Minister, participates in a live tv debate about Ayhans case.
Ajjes family and Nano has gathered at the nursing home and we are watching it together.
When he receives a direct question, Schori says that his opinion is that the boy should have his parents with him.
The room goes quiet and everyone looks to me and Nano -What does it mean?
Can they stay? Can Ahmed stay? If the Minister says that, the government has to do as he says right?
But we don't know, and there seem to be a lot of confusion in the press as well.
The day after the debate, a press release states that what Schori said was “misunderstood” and that the case has not been closed yet.
Ajjes mother calls Ayhans family but they don't know anything more and are very upset, and Ayhan has been taken to the hospital.
On the 22nd of august Ahmed receives a call from his lawyer and Ayhans mother calls with the same news; they can stay, it's over.
This doesn't mean that Ajjes brother can stay but their lawyer is going to send another letter to the court concerning the appeal.
Another three weeks pass before Ajje calls me at home: Ahmed and his parents has just got there and have showed him the papers: They can stay, they can really stay!
A total of 36 children with disabilities and their family members were allowed to stay in Sweden because of Ayhan, and that was only within the first two months.
I run to the nursing home as fast as I can and excited Ajje exclaims:
"-We won, we won" when he sees me.
Even though the room is full of people he looks me in the eyes and says:
"-They are going to be safe! They are safe.., no matter what happens to me now they are safe".
I can feel it, how the tremendous weight has been lifted off his shoulders, but also how his
determination diminishes and how the great tiredness spreads to fill the void. I can feel the brute force and the speed with which the tiredness takes over and it scares me and I have to break away and not look into his tear filled eyes.
He signs me to come closer and to hug him and he says between his strained breaths:
“-I have... everything. Everything I… ever wanted and needed. ...My family is here, and I have a girlfriend... who loves... me,.. nothing else matters now.”And I know that he means it, he always do.
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