"I Love You Auntie JJ"

I’m texting my sister Becky at 7:26pm working on some social media for Brave Comfort on the Monday night before Thanksgiving – “What do you think about doing an interactive Brave Comfort post for Thanksgiving?”

I see the bubble with three dots moving indicating a message is on its way and soon enough I get a voice recording that is one second long. Knowing my sister and the chaotic schedule she holds with my three incredibly cute but demanding nephews (and not just because they’re all boys but because of the medical challenges they all face), I thought for sure this one second message was made in error.  So, I press play and listen just to be sure I don’t miss anything, and to my pleasant surprise the cute little voice pops up of my oldest nephew Russie, “I love you Auntie JJ”.  A short and sweet, one second message from an 8 year-old boy.  It was as if he knew they were the words I needed to hear at that exact moment – and I did.

I hold down the voice audio button and record a message back “I love you too my Russie, so so much!” Three more little dots appear, and another one second message pops up. I hold it down and listen to one of my favorite little voices ask me, “Are you feeling good?”.  I swear this kid is wise beyond his years and knows me better than anyone. Those four little words, I get asked a lot.  You see, I was diagnosed with Systemic Lupus Erythematosus (SLE) and stage four nephritis when I was 17 years old. I’m 32 now, and recently the lu’s been being a little bit of a dick (sorry Mom, but you know it’s true). Medically, they call that a “flare”. It’s when my body seems to do the opposite of what my mind wants it to—constant joint pain, fatigue, nausea, vomiting, migraines, brain fog, etc... Yea, you get the idea? It’s pretty great.

Well, as much as I do my best to hide it, my nephew Russie always knows when I’m not feeling well. It’s probably because he’s accustomed to battling his own medical issues of Hypogammaglobulinemia and PANDAS. Hypogammaglobulinemia is a primary immunodeficiency disease where the body does not produce enough immunoglobulins resulting in a significantly compromised immune system. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections where his body has a misdirected immune response and instead of targeting the infection when he gets sick (which is constantly because of the hypogammaglobulinemia), instead attacks his brain. He goes every three weeks for 5-hour long IVIG infusions along with daily medications and believe me, he handles every day and every challenge thrown at him like a freakin’ champ!  I hope I’m as strong as he is one day, and he always says the same of me.

And so, as he had asked me “Are you feeling good?” instead of my automatic response of “I’m fine” (because I can’t lie to my nephew), I simply say, “I’m doing okay Russie, just a little tired. How are you feeling?”

Three more little dots start moving and this time a two second message comes up with a more mischievous and giggly voice, “I’m great like a bate!”

I couldn’t help but laugh. I just love this kid. This beautiful, strong 8 year old boy who has had to deal with so much, too much, yet, he still has the energy, compassion and selflessness to check in on his Auntie JJ and make her laugh. Russie – you are my Brave Comfort and I’m so thankful for you. Trippie Redd and Odell Beckham Jr. got nothing on you! 

 

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The bond you two have leaves me in awe. These boys are beyond blessed to have you as their role model—showing them how to crush life daily while dealing with chronic illness. Love you so much—you’re a huge piece of my Brave Comfort<3

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