So I'm gonna love you like I'm gonna lose you And I'm gonna hold you like I'm saying goodbye Wherever we're standing I won't take you for granted 'Cause we'll never know when, when we'll run out of time
Yes, it is technically a romantic song but hearing those lyrics while at the dentist office really hit me yesterday. As Zakaria watches Star Wars downstairs and I realize the cantina song will be in my head for the whole day, it reminds me that I tried hard to make the most of our time with Hadi. The Eid decorations, the insistence that he do his homework, the rules for the doctors I tapes on the door (i.e. only five doctors allowed at a time) were all an attempt to make my warrior feel as normal as possible. But let’s be honest, these kids aren’t normal, they are cut from a different cloth.
Another aplastic anemia mom sent me a picture of her daughter’s mouth bleeding and it brought back a wave of memories. The anxiety, the feeling of helplessness of not being able to help my beautiful child. She then reminded me of her strength as she said she was going to smell in lavender and do some deep breathing. In reading that text, I somewhat became alright with being called strong. Because as an aplastic anemia mom, you step up to the plate and are forced to be “strong”. Still grappling with what that word actually means though. Using that baseball phrase makes me think of thevyoung girl struck by a foul ball during a Cubs game and the anguish that Albert Almora visibly felt. Yes, kids are resilient...but they shouldn’t have to be.
A friend recently discussed how her aplastic anemia spouse was going through radiation and the flashbacks of leaving Hadi alone in the radiation room were intense but I smiled thinking about how he had Aamir’s voice reading The Hobbit to listen to on a voice recorder.
In listening to another friend talk about her nephew having a spinal tap and actually understanding our doctor friend discuss the cultures was interesting and disturbing for me at the same time.
Rather than being “too much” for me to hear about these situations, it gives me an outlet to remember all we endured and how it is essential a cure for aplastic anemia is found.
That is my main goal. I am still figuring out exactly what I want the other missions of Team Watience to be. That being said, in reading the questionnaire responses, it is clear the aplastic anemia family wants others to know more about this beast of a disease and they don’t want to be told to just take more iron. It’s obvious to me that I also want to help provide aplastic anemia warriors and their caregivers/families what I wish we had during our thirteen months at NIH, whether it be Eid gifts or a French press. Most importantly, I want to honor my son, Hadi Abdur Rasheed’s legacy.
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