When you’re the parent of a child with a chronic illness, social media is both a blessing and a curse. It’s a blessing because I can connect with parents who really understand, who have encouraged me during the toughest part of my life and who know all the fancy medical jargon I use. They are there for you 24/7. I can snap a picture of my daughter’s latest injection site that looks angry and swollen, post it on the forum and ask people’s opinions from the comfort of my own home. Even if its 2:00 a.m., long after her doctors are in bed, I know someone will answer.
It’s a curse because I’m also able to witness the lives of the children who are struggling with the disease far worse than my daughter has ever experienced. It feels like survivor’s guilt, like we dodged a hail of gunfire in an open field. While I don’t want to pity them (because that’s not what I would want if it were me), I can’t help it. I have so many emotions when I read their updates: fear, relief and, most of all, guilt.
My daughter has been in non-medicated remission from systemic juvenile idiopathic arthritis, an autoinflammatory disease that causes chronic pain, for over a year now. It’s been three years since she’s experienced any pain, actually, and two years since her last dose of medication. I’m at a place in my life where I want to shout from the rooftops that my daughter is cured. I want to run through the streets and tell everyone how proud and lucky I am to be the mama of such a resilient little girl, but I just can’t shake the guilt. I know my fellow moms and dads would tell me never to apologize for celebrating her health; I just wish and pray the same for their children.
When I see her chubby little legs dancing and spinning around, it takes my breath away and my heart beams. I marvel at her health on a daily basis. I wish every other parent who’s experienced this disease could look at their child and feel the same warmth in their heart, watching their child living pain-free. It makes me wonder why my Mia is so lucky? She is absolutely no more deserving than any of them. The treatment plan we were on is standard — we have done nothing differently. Why does this disease pick and choose which child it’s going to relentlessly pursue and which it will loosen its grip on?
At the same time, hearing their stories keeps me grounded. It reminds me there is no cure.
As much as I would like to believe every day that goes by with no symptoms proves she is cured, it’s sadly not the case. Tomorrow, we could wake up with swollen joints and fever, my daughter unable to walk and in pain again. All without warning. So for today, I live in the moment and I celebrate.
I celebrate when she takes off running through the store, because that means she’s well enough to run.
I celebrate her crazy 4-year-old diva tantrums, because that means she has the energy to fight.
I celebrate when she finds the marshmallows and finishes the bag before my alarm even goes off, because that means she has an appetite. I celebrate when she tracks mud all through the house, because that means she’s well enough to play.
So maybe having a little guilt hanging around as a reminder to celebrate all these small things that parents of “normal” kids sometimes take for granted isn’t such a bad thing after all.
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