I have a riddle for you. How do you get an Arab man to ASK if he can change his one year old son's diaper? Answer: The only other option would be to stay in the room with his other son watching him scream and throw a fit from fear and pain while his port-o-cath get accessed.
It amazes me that on our return for our, I don't know, maybe 9th round of chemo in the clinic the same lady hands me a pager and a name band for Yousuf and asks me if I know how to put it on. She informs me that once the pager starts to vibrate we go through 'this' door. I just look at her and wonder if she is really human or a robot. She has to have seen my face over 15 times throughout this entire ordeal. Can't she just hand me what I need and say, "You know the drill!" Maybe I will feel more human.
After a short wait the pager lit up and started vibrating across the table we set in on. I started to pack up the games, books and bottles to head over to the room to get Yousuf's vitals and access his port. I cheerfully said to everyone, "Let's go!" I saw Abu Yousuf lagging behind. I repeated my words just waiting for any excuse to not enter the room. This time it was a plea to change Omar's diaper. I laughed at that one. I, of course, said be my guest but AFTER you stay with me during the port access. I could hear a lot of ughs and sighs from him painfully remembering the past times. I feel bad to say that it has become such a routine to watch Yousuf throw his fit and cry from pain that my heart has become immune to it. It doesn't affect me as it once did. I just hold him as tight as I can trying to prevent him from kicking the nurses. My voice softens with every attempt to console him but I just stare ahead uttering the same words over and over about how fast it will be and how strong he is but I just started to disconnect myself from the pain and sadness that it would usually entail. I'm exhausted from it, I am drained. This phase he will be getting vincristine and methatrexate intravenously every ten days. So far no side effects yet.
Yousuf has been back to normal in many ways. I don't know how long he had the leukemia before he was actually diagnosed but it's been a very long time since I have seen him this active. I took him to the masjid one day and he was running around playing with his brother and laughing hysterically. I forgot what is was like to have him happy, healthy, and strong. He keeps telling me, "Mama, I'm not sick anymore. I'm better!" So he just doesn't understand, if he feels so much better, why we still insist on giving him medication. I just tell him in order for him to stay better.
After our weekly appointment we also went to our weekly trip to the Whole Foods Market afterward. Yousuf was running up and down the aisle laughing. My old instincts kicked in as I started to admonish him but I was struck with another old feeling of when he was so sick I had to assist him in walking. Maybe I am not the best of mom's but I told him he could skip down the aisle as long as there was no one else he could bother and to lower his voice a bit. I was happy shopping while hearing the echoes of his laughter ring in my ears. Probably, some people passing by would see me as another one of those mom's who doesn't control their kids. It reminded me of when I took Yousuf along with me to my appointment when I was having those anxiety attacks and trouble breathing. Yousuf was starving from being on steroids and he had not eaten much that day. The steroids also make him extremely cranky. As soon as I entered the building I saw the snack machine as the only quick solution to get him through my appointment. At that point I had not yet implemented a healthier eating lifestyle. I gave in to whatever he wanted which was a snickers. While we were in the waiting room he got about half way through the candy bar and accidentally dropped it on the floor. He just about had the biggest tantrum of his life right there in the waiting room. I understood that his little tummy would be in pain from how hungry he would be so I calmly sympathized with him and told him I would get him another one as soon as I could. A lady in the waiting room, watching with her jaw to the ground, made a comment under her breath rolling her eyes. What a spoiled little kid right? Controlling his parents by throwing tantrums and crying. I wanted to say to her so bad, "Listen, he has leukemia and is starving from steroids and cranky from all the chemo-therapy drugs, do you mind?" Who is she to judge? And who I am to judge her all the same. Maybe she is in the doctors office from some other disease and has less patience as well. She could be suffering from pain and doesn't wish to accompany that pain by watching a 'spoiled little kid' throw an annoying tantrum. Who are any one of us to judge? I get offended when a check out girl doesn't give me service with a smile or some car cuts me off on the road. Could it be an employee forced to work after hearing bad news of a family member or suffering from domestic violence at home? A car rushing to see the last moments of someones life or a doctor rushing on call to save one? We just don't ever know. We only truly know ourselves and are often too caught up in our own lives and problems to forget that other people have them, too.
The road to recovery for Yousuf will be bumpy. Sometimes he will be too sick from the chemotherapy and other times as if he never had it at all. I will enjoy every healthy moment he has. I will not steal anymore time from his childhood that this disease already has/had/or will. Bad mom lacking discipline and control? I will hold my own gavel and let others hold theirs.