Wednesday, June 16, 2010

What I've learned in a year...

I’m sitting here in the recovery room while Yousuf is still sleeping after his spinal tap. I’m jotting down my thoughts in this tiny notepad I bought from the hospital gift shop since they don’t allow laptops or cell phones in the recovery rooms. I remember the first time we were in here and I didn’t know quite what to do unless the nurse instructed me. I just sat stiff in the chair next to the hospital bed watching other parents acting relatively normal and comfortable. Perhaps those parents have been here before. Now, a year later, I kind of laugh when I realize how I must look to others when I arrive to waiting rooms or recovery rooms. We were in the surgery waiting room just last Friday and when I arrived I found a couch, unpacked the toys and books, kicked off my shoes and sat Indian style on the couch as I started to dive right into reading. I glanced over the top of my book to check on Yousuf and saw a room full of parents and kids staring at me. They were all sitting formally and up right while their kids checked out the waiting room toys. I thought to myself, If I’m going to spend hours in here might as well make myself comfy. New nurses in the recovery room keep coming over to me to instruct me on the “after-surgery-instructions”. As if I don’t know. Yousuf looks so babyish curled up on the bed with his features so miniature. He expresses the same look as when he was a new born laying his head on my shoulder falling asleep after nursing. What this tiny fragile little 4 yr old boy and this experience has taught me in the past year…
1. There are different kinds of leukemia and acute lymphoblastic leukemia is one of them.
2. Lessons learned through our children are the most painful but also have the most impact.
3. The real meaning of helplessness.
4. That the Cancer Center at TCH is on the 14th floor and it is full of people just like me and you and every day and, often times, all day.
5. Just how fast a building can be erected in the medical center.
6. Stress comes at many different levels. We can’t avoid stress but we can always control the level.
7. No matter how many times a child sees a needle they may never get used to it.
8. It is not enormous amounts of knowledge or high levels of intelligence alone that matters but the full appreciation and gratitude that drives us to make change in our lives and the world.
9. Texas Children’s Hospital has some of the best doctors, nurses, valet workers and volunteers in the world.
10. Understands a large amount of the hospital funding MUST be through the parking costs.
11. You can’t always prevent cancer from coming but you can ALWAYS help someone go through it.
12. There is never an act of charity or kindness that goes unappreciated or unnoticed when brought into the corners of a hospital room or waiting rooms.
13. Medicine is just another drug; some cure you and some harm you and sometimes they do both simultaneously.
14. They seriously need to start some way of recycling at the hospital. I see so much wastage of bandage wrappers, tubing, alcohol pads, and oxygen masks.
15. The meaning of family and how something tragic forces unity and teamwork among family members.
16. Cancer Center-14th floor, Day Surgery 7th floor, Orthopedics 8th floor, Metabolic disorders- 16th floor, Another Day surgery- 3rd floor in the West tower, Cancer and blood disorders in patient- 9th floor in west tower. I know, I have been to all of them A LOT.
17. An understanding that spiritual, mental, and physical health all affects each other and one is not more important than the other. They all deserve attention and nourishment.
18. Health is not just a noun it is a verb, so take action to always maintain is, strengthen it and appreciate it. Health is also an attitude when given the will it can fight any disease physical, mental or spiritual. You may lose or win but never lose hope and give up the fight.
19. I see many babies and small children going through more tests and are more resilient than adults going through minor difficulties. We can learn a lot from children.
20. You can’t change what happens to a child or even how they perceive the world but you can give them the right tools to guide them through it.
21. I will never underestimate a mother’s love for her child. Sometimes loving them is all you can do but often times that’s all they need.
22. Yousuf is one of the bravest kids I know whom has given me purpose and meaning to my life!

Almost 1/3 of the way there! I love you, my little future cancer survivor!

5 comments:

  1. Your are an amazing mom and when I feel down from everyday struggles in life all I have to do is think of you and I am able to conquer anything.. God bless you and your family..

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  2. You are fantastic at expressing yourself m'A! My thoughts exactly.. but so eloquently put by you..I'm just the same now, walk in relaxed into the clinic, but 8 months ago was a bundle of nerves...but i still struggle with the spinals.. can't quite relax until it's over...

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  3. Aslm , so glad u updated, I missed reading ur blog. We have only 4 months of Sumayahs treatment left Alhamdulillah, it goes fast............. We transferred to saudi arabia in April as my husband was working there.........big mistake........nothing can compare to healthcare of west. Now we are returning to the Uk for her final cycle inshaAllah.

    Keep updating regularly if u can,

    Umm Ibraheem

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  4. Its not that your words are not inspiring its that every time I read your writings I cry-therefor I am left with tears and nothing to say.

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  5. Umm Ibrahim- Congrats! Masha'Allah, only four months to go! I bet you feel freedom around the corner. I can't wait for the day when I dont have to keep asking the questions: What day is it? which medicine today? What are the side effects of this one? Can he have food with it? When was the last time he ate? Is he sick from the medicine or did he catch a bug, if so how serious is it?

    Do you know if they will be removing the port-o-cath the very last day or beforehand? Just wondering. Let me know when you guys are done and how you feel!!

    Rifat- The spinals are more normal for me now but still get freaked out when I see him pass out instantly from the anastesia. It was so sad though, last time he was begging me to let him "sleep" on his own. He tried to show that he could do it himself without them giving him medicine. That broke my heart, poor guy.

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