It had been an entire six days since I had seen Texas Children's Hopsital. It should have been 7 days but last Monday they FORGOT to give Yousuf one, out of the two, of his chemo drugs through his port. The one who actually makes the vincristine called us after already reaching home. After a whole week in the hospital and a whole day sitting in waiting rooms we were just too tired to turn right back around. We rescheduled for the next morning. In the hospital, the doctors decided to leave the needle in his port since it would be accessed the very next day. Well, they forgot to and then just took the needle out just so they could restick him less than 24 hours later. Poor Yousuf.
The six days felt like six weeks to me. Aspects of everyday life returning to somewhat normal. Yousuf had the energy to go up and down the stairs on his own, get out of bed on his own and was preoccupied by his little brother, catching up for loss time playing and laughing joyfully. I started to step out of the "sick world" and revisit the ordinary life I once lived, but with a different attitude. A life that was once filling Yousuf's ears with a bunch of "hold ons" suddenly were interrupted and replaced with a do-it-now and everything else can "hold on" manner. I would be in the middle of scrubbing the bathroom counter tops and Yousuf would come in asking me to fix a toy for him. Usually a hold on which would always lead to another "hold on" and to another...and another. There's always a chore, a dinner to be cooked, a diaper to be changed, a ringing phone to answer, or an errand to run. If I constantly put Yousuf on hold for every single demand then his needs would never get met and he would be left feeling unimportant. I left the sponge on the counter for a while as his demands started to unravel, but realistic ones. He deserves my attention. Those needs turned to be us playing together which lead to eating dinner together. The sponge with the accumaltion of dirt under it was still waiting for me in the same exact spot I left it. My bad habit of striving for perfection in my home has taken a new direction. On how to live healthy and happily but not always perfectly.
I began focusing on healthy meal plans, games we could play together and any excuse to give a hug. That was something I missed for along time. when we were in the hospital and he wouldnt move the left side of his body he wouldn't let me do anything more than kiss the top of his head. I tried to break the rule while he was entranced by one of his toys, thinking that I could get away with more. I kept kissing the top of his head only making me want more. So I brushed my cheek affectionately where I had kissed him closing my eyes. Then I couldn't resist to try to hold him close to me from his right side. Then out poured the whines and cries. I attempted this almost everyday in the hospital only to get the same lecture from Yousuf not to touch him. I would do anything just to hug my baby, just one good hug. I remembered that part of that movie I watched about the young girl who also had leukemia. Towards the end of the movie, instead of the mother who once would hold the little girl to console her, now the daughter was holding the mother to console her. That crossed my mind when I was trying seflishly to steal hugs from Yousuf. It wasn't for him, it had become for me.
Today was awkward returning to the sick world after being out of it for so long, well for six whole days. Yousuf seemed to have a good attitude when heading to the hospital. Though his fits, during needle access, are the same and stressful. It was a long wait today and Yousuf kept complaining from hunger pains. He dramatized the anastesia process as usual. Each time they do it I get more and more nerve to stand outside the door and watch when I am not supposed to. I want to see if he really is "knocked out" enough to not feel anything. When most kids are completely passed out I could see Yousuf still swing his arm shooing them away. Abu Yousuf nudged me to move and just walk away. By the time they were finished we were all famished and Yousuf was like a professional. Minor aches and pains but he gets right up and helps the nurse flush his line and reminds her to put the bandaide. Next month we will have more of the intensive drugs that cause Yousuf's transformation, but for now I will enjoy the boy I recognize again.