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Advocacy, grief and gratitude

I attended the Aplastic Anemia and MDS International Foundation over the weekend and the staff was great about checking in on me and making sure I was doing alright. Though sometimes it is tough, being an advocate for bone marrow research is now part of who I am.

Sitting in a lecture listening to how cyclosporine can cause extra hair made me smile. Hadi definitely became somewhat of an adorable little Chewbacca. I am now also remembering when Aamir taped up a bandaid with all the hair that was pulled off of Hadi's arm to remind the nurses to use gauze rather than bandaids during "pokes". It was gross. Trying to keep up with all the side effects of the medicines was tough. Seeing the slide discussing how gums can become swollen reminded me of when there was a point we could barely even see Hadi's teeth. My warrior, man, I miss him and it is so difficult to hear about other young warriors battle liver cancer and aplastic anemia. As I stare out my window realizing I need to refill the bird feeders so I can continue to witness all of the beauty that we have been given on this Earth (except grackles-I am not a fan), I hear Hadi's little voice saying, "Allah loves me more"...yeah, buddy, he does.


Can I also just say that yes, I am fasting and I am working hard at being grateful for everything I have but I also can recognize that gratitude and grief can exist together. I also am wondering if I can break open my fast Sunnah style with a date but then go jump in a vat of chocolate.


We have to find a cure for this beast of a disease.

https://aamdsif.salsalabs.org/eoyp2pfundraisingcampaign/p/hadiabdurrasheedsresearchfund/index.html


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Team Watience aims to create a caring place where aplastic anemia patients, caregivers, families and interested collaborators can come together to share their experience on healthy grieving, mental health, and disease support programs.