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
When Ajje understands that he can’t just pack up his things and leave the nursing home I worry that he will get upset, but "upset" is not the right word.
He says that at least now its only a matter of time.
-It's not entirely true, but I understand why he needs to think that way.
His stomach is better but his eating is still an issue and he only weighs between 28-29 kilo, which is even less than on the last check up.
He also needs a new ventilator and a new bed that he can use at home and nobody seems to be able to say when these can be ready for him. Also if Ahmed is to help with his care, his family needs somewhere to live close by.
I try to talk to Nano and even to mom about how Ajje seems to be much more tired since he found out for sure that his brother could stay. Nano doesn't sugar coat anything and says that he probably kept his game face on as long as he could.
-That now that he has reached his goal he can finally relax and he no longer has anything to put up against the disease. His words makes me sad and I hide them as far back in my head as I can, but I take it that I have to find something else for Ajje to fight for, something to motivate him.
I can't hide from him that I'm upset that he will be so far away once he moves back home.
I won't be able to just go and see him on whim after school or whenever because he will be an hour away just like Nano. But he says calmly that we will still see each other when we can and he looks up at me with those golden eyes and I’m more convinced than ever that I will hate being away from him.
-What happens when we look into each others eyes and his presences fills me; - it scares me.
It makes me feel incredibly powerful. It is so intense and still I feel so calm once our breath and pulse slow down.
That I am able to feel what he is feeling; -and not least that I'm able to open myself up to him, is more than I can begin to understand.
How is this possible when I sometimes feel like I am still hiding things from him?
-My secrets are not about my father or the man on the stairs, not about Rick kissing me, and not even about the way I feel when I face someone with a disability. They are about the fact that I don't really belong here and that I don't understand what it is to be a teenage girl. I keep quiet about this because I don’t know how to explain to him how lost I feel sometimes.
Ajje moves back home in the beginning of september, and I miss him but I spend more time with Christine and I don't feel as lonely as I had feared.
I still see Patrik's ghost when I'm at school, but I take it with ease; -most of the time.
When I imagine him standing there by the lockers looking down on the floor and hiding his hands or sitting in the library waiting for me I think to myself: "Yeah, I miss you too..."
But some nights are bad because I start having those dreams again, the ones where Patrik and Ajje are fighting, and I wake up feeling so horribly, horribly guilty.
The girls are trying to turn me into a girly girl and I appreciate it but it drives me nuts at the same time. Its a whole new world to me. They keep talking about makeup, “products” and makeovers. I don't tell them that I have no idea how to put mascara on, that the eyelash curler looks like a medieval torture tool or that I don’t understand why I would need to know how to use either.
-I don't understand why I would need a makeover because I'm fine the way I am. Sure, I'm a little heavier than the average girl but far from the most overweight in the group and Ajje happens to think I’m cute. -I'm also only one of two who has a boyfriend and they want to hear everything about me and Ajje, -as long as I don't say anything that even hints that he has a disability. It is ridiculous and frustrating since they all know that he uses a wheelchair and how we met. I don’t understand why they have to keep up this charade. Some days my patience with them runs out and I keep to myself, -but this seem to make Christine feel bad, so I try harder and even go out with them sometimes.
Some of the teachers at school tells me they are glad that I’m back, and I feel both strangely sickened and a little hopeful about it.
Time seems to move strangely fast, but I manage to keep up in school and I see Ajje two times per week, usually a few hours on tuesdays and the whole sunday. And because I spend my sundays with Ajje I see Nano, Jon and the sisters even less.
When I’m not with him, I can sometimes feel a sudden sting in my heart and I just know that he is thinking about me and missing me.
Most of the time it’ happens in the evenings after we have spoken on the phone and I know that he will be going to sleep, but sometimes it happens during the day. Our phone calls -but mostly the bill, drives my mom and stepdad crazy because if I’m not on the phone with Ajje in the evenings, then one of my brothers are using it and mom starts to unplug the phones after eight.
Nano might have predicted that Ajje would become sick, but instead, it’s his father and me.
As soon as the temperature drops I get a cold that develops into pneumonia once again. In my fever I keep getting out of bed and sitting naked on my floor crying for Rick and Patrik and mom says she doesn’t know what to do with me. But the worst thing is I that can’t see Ajje for over four and a half weeks because we all worry that I will make him sick. When I can finally go over to his place and I hug him, he is the one who apologizes to me because he couldn’t see me and take care of me when I was sick. He starts sayings things like that my lungs were hurting, especially on my left side, and it scares me; How can he know this?
A few days later I’m having lunch alone in the school cafeteria.
-I’m eating alone because I’m quiet moody, occupied with worrying and thinking about Ajje because he has an appointment with his cardiologist that day.
I’m sitting at a window table close to the exit and I’ve nearly finished my lunch when I feel a very intense pain deep in my stomach and I am overcome by a sudden fear: I’m dying.
I can tell it’s just not another panic attack. I manage to stand up and walk away from the table and when I turn at the corner towards the exit I start throwing up in the corridor outside the bathroom stalls. The stomach pain subsides somewhat but it feels like something is squeezing my heart really hard and there is a sharp pain. There is only one thing on my mind: I have to go to Ajje or I will die.
I see flashes of Ajje and his father, everything starts spinning and I fall to the floor. By now some other students have come to see what's going on and they help me up, but there is only one thing I can do. In panic I run outside to the bus that will take me to the subway station from where I can go to Ajje's station and to his home. I don’t remember anything from the bus or the subway, but I think some people tried to talk to me. I remember almost crashing into the sliding doors by the exit at his subway station when I ran out.
I run across the patio, under the bridge, past the two blue houses and past the kindergarten before I can see his apartment building. I never go inside, nor do I notice the pain subsiding, because a van is parked outside and I recognise it immediately.
The lights are blinking indicating that the lift is out, and when I get closer and to the back of the van, I see Ajje's father kneeling strangely on the ground in front of the door of the building.
He doesn’t respond when I touch him and repeat his name. Ajje is in his wheelchair, on the lift in the middle of the air, unable to go anywhere and with his head hanging down to his chest.
“-Ambulance”, he says and his voice is hoarse and not much more than a whisper.
“-You... ambulance” he repeats. I start shouting for anyone to help us, -I tap in the code to the door and when I knock on the third apartment door inside, I get one of his neighbours to call for the ambulance while her son runs with me back to the van.
He lies Ahmed down and talks to him and it seems like Ahmed is trying to move his lips but we can’t understand what he is trying to say to us. I pick up the remote control to the lift off the ground next to him and run over to Ajje and lower it. I lift his head up and I know that he can hardly breath. His arms have dropped and I lift them back but he doesn't make any attempt to control his wheelchair so I turn it on for him and back it slowly of the lift and turn the chair around for him so that he can see his dad. All while telling him that his dad is not responding and that the ambulance is on his way. More neighbours have come out and I ask the woman who called to call again saying they will need two ambulances, not just one.
“Ajje? -Ajar? is your mom home? Are your uncle or cousins home?” I try to ask him but I’m pretty sure his mom would have noticed if something had happened if she had been home.
“Ajje, are you OK? The ambulance is coming. What happened?”
“-I heard… hi… fall,.. he didn’t re...ply,.. -I couldn’t see.. I… shout ...ed...for someone... to come, but they.. could..not.. hear me,.. my voice...”
“-The ambulance is on its way” I keep assuring him.
“-Too.. long… 40 minutes… late”. he whispers.
“-Is your breathing OK? “ I ask even though I can tell it’s really bad.
“-Try to slow down. -Do you want to lie down? I should take you upstairs but we need to wait for the ambulance.”
“-I’m not... leaving... dad”. he says and tries to reach out for Ahmed.
“-Baba? the ambulance is coming... Li.. made sure the ….ambulance... is coming to... ...to... take you to the hospital.”
I let go of his hands when I realise I might be squeezing him too hard, instead I keep stroking his shoulders.
“-I.. tried to... back off ...lift... so that I could ... down and... help… ..but... I couldn’t." he whispers slowly with his tongue out.
“I lost the control,.. and I didn’t... know where dad was, I ..might have ..rolled… on him.
I wanted...to... get help… maybe... ...maybe crash....the door... for anyone to hear us”
I bend down and lean my head on his until we hear the sirens.
Everything happens so fast and I tell them everything that Ajje has been able to tell me.
They think that Ahmed has had a stroke, but that the episode was over when they got there.
-Ajje receives oxygen but they don’t want me to go with him in the ambulance. As soon as they close their doors I fetch Ahmed’s keys from the van and run up to their apartment and call Ajje's brother -his mother is there, and when I tell them what has happened I can hear her starting to cry loudly in the background. They rush to the hospital and his cousin arrives within minutes; and together we get permobil back into the van and then he drives us to the hospital.
When I sit in the van and I'm trying to calm down, I can tell that I smell of vomit, and he asks me how I knew and how I got there and shouldn’t I be in school? I can’t answer him because how do I tell him that Ajje told me that I had to come?
Ajje is going to be fine. He is shaken, his throat and his vocal chords are irritated but the doctors doesn’t want to keep him overnight. His brother tries to explain to the doctor in poor Swedish and then in english that he can’t go home because he and and their mother needs to stay here with his father. Ajje looks at me and signs to me to come closer and whispers slowly:
“-We.. a... stay.. wi... dad”.
“-He says we should all stay here and wait for news about his dad, he doesn’t want to go home” I say. To make sure that the doctors understand, I repeat what Ahmed tried to explain, that he has Duchenne and that he really can’t be home alone, that his parents and his brother are his caregivers.
“-Well we can arrange for the home care service to check on you a few times while you wait for your mother to get home”. With that he starts to walk out the door, handing the papers over to a nurse.
“-But he needs someone with him all the time! What if he starts having breathing problems again?” I protest.
Ajje tries to say something, and Ahmed asks the doctor to please wait.
“-I ..stay...here… dad. Sleep ...garden”
“-He wants to stay with his family and then stay the night at the Garden, it’s the nursing home where he stays when he is not well enough to be at home.” I explain.
"-So can we wait here while you call them to arrange it?” I pressure him.
They leave without promising anything and I whisper to Ajje and I try to smile.
“-We probably shouldn’t have told them we brought your permobil with us, now they are going to use any excuse to get you out of here.”. I ask him to please rest his voice, and we wait.
We are very relieved when we learn that Ahmed's condition is not as bad as we feared.
It takes a couple of days for the doctors to assess him thoroughly, and they say that he had either another minor stroke or a TIA. We understand that he has an increased risk of having another stroke but once he is ambulatory they send him home, making sure that his regular doctor calls him to arrange all further appointments.
Meanwhile, Ajje can’t stay at the nursing home because they don’t have a free bed for him, and he can’t be home so he is sent to a Hospice for children south of Stockholm.
I stay with him for 3 days skipping school, but I can’t sleep over.
I try to making him rest his voice and take care of his breathing, but he worries so much about his mom and dad. He does cheer up a bit when Ahmed and Aram comes to visit. He doesn’t want to eat because his throat is hurting, -when the doctor decides he needs to put in a infusion and threaten that they will need to send him back to the hospital if he doesn’t eat, he takes his protein drinks, and he can go home around the same time as his dad.
In november, Ahmed and his family moves back into his parents apartment, because Aram now needs his first wheelchair and there is no way for their mom to do it all on her own.
They move Ajje's bed and his equipment into the living room, replacing his old throne.
I had never thought about how the snow and cold would affect him and when I understand that he won’t be able to really be outside until the spring, I resign, and we spend our tuesdays and sundays together mainly watching films and talking. He even listens patiently to me when I talk about school and the girls, but we have silently agreed that we will not talk about what happened the day when his father had the stroke.
-Every sunday when I come to the apartment, his father takes my hands in his and thanks me. -I’ve given up trying to say to him that he doesn’t need to thank me, and he is such a sweet, kind man. Ajje and I try to find new routines now that we don’t get to spend much time alone.
If I’m frustrated, he is calm as ever, but I think it’s partly because he is so tired. We still speak to each other pretty openly because when his relatives are not there, I feel like I’m part of the family. When we watch romantic movies for a change, we joke about why I never do this or that for him, why we’ve never visited that romantic place together, or why he never buys me flowers.
Once when we were re-watching his favorite Rocky movie, he asked me if I would still love him if he was like Rocky, and I told him that I loved him just the way he was. He looked at me and his head dropped, and when I took his head in my hands to adjust it, he had this huge beautiful smile on his face and he started giggling, unable to stop: “-You love me”.
And I realised that it was the first time I actually said to him that I loved him, and from that moment we were like two love birds, quarreling over who could say it the most times and who would say it last.
When I need to leave, he gets in his wheelchair and follows me out to the elevator, and sometimes we ride the elevator together down to entrance and back up again so that we can have a little more time, and that’s where we kiss and hold each other, not in front of his family.
One of these afternoons when we kiss, he says:
“-Maybe, if you are a muslim girl, we can kiss when we want.”
I knew that he would bring it up again eventually. I don’t reply, but when the questions comes up again at our round table dinner the coming week, I have to tell them all that I’m not sure if I can do it.
The next day, Christine and I are sitting in the school library with Sultan, one of our mutual Turkish friends at school, discussing what Ajje asked me; whether or not I would be willing to convert to Islam.
“-It’s considered a very bad thing for a Muslim to be with a Christian.” Sultan repeats.
“-I’m not even sure if I believe in God” I say.
“-But you believe in being with Ajje, don’t you?” Christine says.
And I do, full heartedly, and I am touched by the way she say it.
-And if God and Jesus are not important to me, why could I not become a muslim?
I ask Sultan what I would need to do to convert, and we discuss it for a long time. She says that some people want you to get a paper from the mosque and other says that you only need to believe.
But the more I think about it, I know that I can't do it. I made the choice not to complete my confirmation because I was not sure what I believed in, because I didn’t want to be a hypocrite. If I would convert to Islam only to be with Ajje, I would be even more of a hypocrite and a liar.
I go over and over in my head how I should tell him that I can’t, and when I see him I tell him that I like listening to his stories about Muhammad and his stories from the Koran, and that I believe in God, but maybe not in Jesus, and I ask him if he thinks that maybe, God would find that enough? I feel a wave of momentary disappointment coming from him but he doesn’t look away and I hope it means that he understands my decision and that I haven’t completely closed the door.
For the rest of the week, we only talk on the phone a few minutes a day because he says he is too tired and he has these headaches that wouldn’t pass. The headaches was something that had become more and more common. I don’t understand how bad it is until Ahmed calls me on saturday morning saying that he has been taken to the hospital by ambulance because he was in so much pain and could hardly speak. He stayed at the hospital for two days and got an appointment a few days later with his doctor, and he ask me to come with him.
In one week he lost 4 kilos down to 25 and even though he could sit up in his wheelchair with the back brace on, he couldn’t drive it himself.
At the doctors office, I was asked to leave but Ajje refused. The doctor said that Ajje’s body could have had a delayed shock from the time of his fathers stroke. If his body continued to fall apart in this speed, Ajje would not have much time.
He was asked to come back for more tests four days later, and again the doctor asked me not to come with him and this time his mom shut him up and I felt so proud to be a part of their family.
When we came back and he sat behind his desk and read the results to us, I saw Ajje sink further and further down, and I thought I was going to lose him right there and then.
I was standing next to him while his parents were sitting down in the chairs in front of us, and I calmly ran my hand down his shoulder. His head dropped and I when I adjusted it I saw the chock and the pain in his eyes and at first I couldn’t make him face me. When he finally did, the chock had been replaced by a stillness and relief.
Even when the doctor cleared his throat Ajje was fixated on me and when I heard him say:
“Also, the other test that you asked us about shows that you would likely not be able to become a father…” The rest of the sentence fades away and all that exist in the room is me and Ajje, -and tears are falling down Ajje’s cheek as he is crying in silence.
That’s when I realised everything that he had dreamt for us, and I loved him so so much.
“-...But that’s a good thing right, because you wouldn’t want another baby to take care of would you?”
And I swear when I heard the doctor say those words, -I could have killed him.
-How dare he bring these news to us and then imply that Ajje is a burden to us? I was boiling mad, but being there for Ajje was most important.
Before his 17th birthday I got sick again and I couldn’t see him. This time he got sick a few days after me. He had a low fever that would become higher in the afternoons and he started coughing. He needed the ventilator, but everytime he needed to cough, we had to take it off and we took turns watching him. I would sit on a chair behind his bed, him lying on his side facing away from me and I would stroke the back of his head and his thin, shivering back. He received antibiotics, and on the third day, they moved his bed so that he could rest better in a more quiet room. When he was awake, the tired, empty look in his eyes scared me, chilled me to the bone. Even when the fever went down and he could say that he was feeling better, the cough persisted. Some days, he was so tired and in so much pain that he couldn’t speak, but by now everyone agreed there was no point in taking him to the hospital and Ajje most of all did not want to go.
His chest hurt, his back hurt, every muscle and bone in his body hurt, and having to cough exhausted him. He prefered to lie in a dark room with the blinds down and I would sit next to his bed and talk to him, hold his hands and try to interpret if he needed something or wanted a glass of water, or anything at all.
On some better days when he could speak but wanted to stay in bed we would make up stories together, stories that we didn’t share with anyone. In some, we were a celebrity couple, famous movie stars, and in others we were kurdish farmers with too many children, living in the mountains. -At least we were always together. When I could see him smile it was the best feeling ever, and leaving him as the worst feeling ever, and I was turning into the worrying kind.
I asked Aram if Ajje was sad when I wasn’t there, and he said that all he did was sleep, -and when he didn’t sleep all he did was talk about going home.
But he is home now, I argued. -He wants to go to Diyarbakir, Aram explained.
When I asked Ajje about it, he admitted that he wanted to ask his parents if he could go. One last trip before he got too sick. Maybe his parents couldn’t go with him, but maybe Ahmed could, or Nano -he still wanted to go right?, or his uncles, he said hopefully.There was no point in saying that he was already too sick, because he knew I was thinking it.
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