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  • Writer's pictureSaira Sufi


Carry on my wayward son

For there'll be peace when you are done

Lay your weary head to rest

Don't you cry no more


I belt this song out at random times, particularly in my car. I started off my day with "The Joker" on the radio and while it is an amazing song, it just didn't seem right to include the lyrics in this post (title of this post make more sense to ya now?). A Kansas song seemed more appropriate. I think about how weary Hadi's body had to be and how frustrating it must have been for him to try to communicate that he just wanted to move up in his bed and sleep sitting up. I helped sort gifts for the Gifts for Kids drive at Cornerstones and I am happy to report that I did not take the awesome Chewbacca blue tooth speaker for myself. It is because of Hadi that I actually now get excited about such a thing. He is also the reason I have decided we will be going to a ComiCon. Winter break is coming up and it reminds me of when we went to Puerta Vallarta and the boys zip lined. I was terrified watching them but they were happy as clams. I was listening to music yesterday and the lyric "love hurts" came on and Zakaria said, "love doesn't hurt. I understand his confusion but I am pretty sure I could only describe the feeling I have for loving Hadi's smile and realizing I won't see it for a long time ashurt.

Some might be wondering where Team Watience came from. I often told Hadi that we had to have patience during his journey and so we decided we were Team Patience. We also shouted out, "We Got This" many times. Hadi wanted to combine the two and Team Watience was created. What does it mean for me now? Same thing...patience as I continue to live my life and while at times it seems unbearable, "I/we got this".

I had a lot of friends tell me I should start a blog/write a book. We shall see what the future holds but I will say this...if I can bring awareness to the evil beast that is Aplastic Anemia and I can make you all continue to spread the word and make people get to know my son in a small way, then I shall continue (that's a poorly veiled attempt for you all to get others to subscribe). And I mean a beast as in more like Voldermort and not like Belle's beast.

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