Monday, December 21, 2009

The "Normal" Path

We took a slightly different route to our appointment today. We usually park valet but today the line stretched all the way to the main street -at least 10-15 cars ahead of us. Time left us no choice to wait; we had only 10 minutes to get to the 14Th floor. The waiting room was packed with patients, volunteers and toys. Despite the overload we were seen pretty quickly.

Last week Yousuf underwent a blood and platelet transfusion from extremely poor counts. This week, alhamdulilah, his number was high enough to send him into the maintenance next week -if his counts continue to look up. Yousuf could feel the difference today. He looked up at me and said, "Mama, I'm happy." After discovering they are taking out his needle without infusing anything in it.

Even with all the excitement echoing between the waiting room walls I had to take some time and hide myself in tears. There were a lot of new faces today. I saw older teenage girls who looked newly diagnosed. The new diagnosis usually look completely normal with lengthy hair. Patients in the maintenance phase can look pretty normal, too but they usually act as though they are home while being in the waiting room. There hair is also usually shorter. I guess I just couldn't hold it in today.

Yousuf threw his fits during port access again making me feel as though he was the newly diagnosed one. His fits seem to be the same since day one. They had a curtain separating Yousuf and me from the new pretty teenage girl and her father. Both of the patients, in which, were suffering their own tests through their blood being drawn. Yousuf doesn't like the smell of the alcohol wipes and feeling vulnerable with his hands being held down. The teenage girl was moaning and almost fainting. It took her time to recover. Meanwhile, her dad was making jokes to think of boys and alcohol the way she feels about the needle. She didn't make any noise from trying to keep herself from throwing up. I, on the other hand, was giggling to myself.

The good news about Yousuf sent a wave of happiness over my previous sorrows. However, I'm still scared. I remember once a person told me a bit of advice, when I was a teenager, the key to life is being able to subject yourself to change. I always remember that but hardly ever act upon it. That part is difficult for me. It took me almost four months to cope, accept and to adapt to this new way of life. I know it won't be as it was before but many of the rules can go back to normal.

The truth is I don't want it to go back to normal. I don't like who I was before and how I was as a mother. The situation, in many ways, had changed me for the better. It has forced better time management skills for us to be together as a family, too. If I stick my foot back into the "well" world again I won't be the same person. The changed perspective on life in my old surroundings could create discomfort. What that person said was so true, "subject yourself to change". Because life is always changing, not only around us, but within us. The only control we have is to allow these changes to evolve us in positive ways and not destroy us.

I'm not really sure now what a "normal" path would even look like. I will still have to take that step in some direction and no matter which path it happens to be I hope and pray it will always be a guided one.


  1. masha'Allah, masha'Allah, masha'Allah!!!
    So lovely to see little Yousuf nearly out of the intensive phase!!
    My son will have his internal line soon, before his intensive.He prefers to have Hickmann line rather than port because he doesn't want needles..was wondering if they offered that option in USA, considering you mention Yousuf gets upset about needles into his port?

    I would like him to have a port, really don't like the thought of tubes!!! However, my son's decision is paramount, so tubes it is (or WIGGLYS as they call them in the UK!!)

  2. Yousuf had the PICC line which, I think, is the same but in the arm if I'm not mistaken. He had that the first month of his treatment. It was very difficult because we had to flush it everyday. Each time we had to Yousuf would get so nervous. Plus, baths were very stressful and he didn't want to move much while playing.

    We thought about taking the port out during the maintenance phase but agreed that it was easier overall. He can swim and infections are less likely. But the repeated needle pokes every two weeks for the next three years makes me rethink that. Either way it doesn't sound like a walk in the park.

  3. P.S. I LOVE the name....wigglys!!! So cute. Maybe I can start calling them that when he is accessed, it sounds like a more kid friendly name :)

  4. lol, yes call it wiggley.. Yousuf may like it!
    They put the wigglys in the chest here...H for some bizarre reason is looking forward to it (he hates caniulas)!
    Yes, certainly isn't a walk in the park..but ALHAMDULLILAH we still have to count our blessings..

  5. Salam sis,

    May Allah reward you so much for your hardship. May he take away yusuf's pain and replace it with good health, ameen.

    Your articles are an inspiration to read. Your strength and willpower are the key to your success and Allah has granted you an amazing ability to transfer all the negative energy and feelings to a positive lesson for yourself and others who read your blog and can learn from it. So jazak Allah khair for that.

    May Allah bless you and yusuf. It is a blessed day for us tomorrow. The 10th of Muharram. The day Allah chose to rescue prophet Musa pbuh from his enemy. I make dua on this blessed day Allah takes away yusuf's enemy from him permanently and replaces the pain with good health. I make the same dua for all the people out there who are not well.

    Sister Rifat, I make dua Allah cures your child also. Ameen.
    Let us all make dua for each other and hope for Allah's mercy. Ameen

    love and dua


  6. salaams Shazia!

    sis, JK for your really kind comment..nice to hear from someone in my country:-)