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  • Writer's pictureSaira Sufi


I woke up this morning really missing Hadi and I mentioned it to Zakaria. He responded by saying he did as well and then said he was pretty sure that at that moment, Hadi was showing another kid how smart he was by explaining Aplastic Anemia. I smiled because he was probably right and then it reminded me of how Hadi knew all of his medications and actually made a song out of them. Those stupid little medicine cups filled with all his pills, but I giggle thinking about how he would school me on the names of the medicines. Oh, Hadi, did you really make a song about Tacrolimus set to the tune of Frere Jacques? What an awesome memory. Ya know what is not? Watching your child have to be taken down to get a CT scan while intubated. I am pretty sure I discussed how PTSD will definitely be part of my life in an earlier post. I can hear Hadi saying "owie"over and over and feeling so freaking helpless. Then my mind switches to vividly seeing Hadi with his arms outstretched saying we needed a group hug when he could see me tearing up.

It is "Giving Tuesday". I sometimes wonder if I just say goodbye to the world of Aplastic Anemia and bone marrow failure because, well, I could. I don't want to though and furthermore, I know Hadi wouldn't want me to. I still need to write to Hadi's bone marrow donors and express my gratitude. I will soon enough but I am pretty sure the folks at Cold Spoon don't want to see the snot from my ugly crying. So, why do I still want to promote bone marrow failure research and transplants even though they weren't successful for my Hadi? Because I can remember being terrified of hearing the words "bone marrow transplants" and bracing myself to hear that Hadi didn't have any matches. I asked the doctor to repeat that he did actually have matches about five times. Granted, Allah (SWT) decided Hadi had endured enough and it was his time to return to him but what about all those others who Hadi's experience can help? How about the fact that my Hadi was able to get a reluctant African American nurse to sign up to be part of the registry? She often commented how there needed to be more brown people on the registry but then when we discovered she was scared to put herself on the registry...well, Hadi was ruthless and it was awesome. Yeah, Jersey, I am talking about you. Thank you for the continued support and prayers. Please donate to Team Hadi. I would love to get to $100,000 by the end of the year. and if you haven't signed up to be a donor, please do so or at least e-mail me privately to let me know what is preventing you from doing so as it would be most helpful.

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