Hardcore Truths

I have something to admit.

 I have absolutely no idea what Jackson's meds cost. Nor do I have a clue what each visit to Dr. M costs. And the infusions? Yup, you guessed it, no clue what that runs either.

I do however know what it costs in gas, tolls, parking fees, and emotions. I know what kind of toll is takes on my child. I see the fear in his eyes every Friday, because Friday is shot day. It's heartbreaking to know that you're child will never be "normal", but really, what is normal? Normal for us is having an 11 yr old son who is healthy, and yes, mouthy, but he's a pre-teen and we're working on it. We have a new normal where our 7 yr old son is concerned. Every morning he takes his 10 ml of Naproxen, his gummy vitamin, and his Prilosec and every night he takes another 10 ml of Naproxen and another gummy vitamin. Every Friday he mentally prepares himself for his shots, while his father and I get everything ready. Humira shot comes out of the fridge about 45 min before shot time, it's cold and if it stays cold, it hurts far worse than any shot should. The cream gets put on the back of the arms, wrapped with saran wrap and left alone for about 45 min. My husband gets the methotrexate shot ready and then after that 45 min is up, it's go time.

Jackson may cry, he may scream, he may run and hide, but deep down, he knows that without these shots, he will be in pain. He knows his joints will swell, he knows exactly how he'll feel. Children are amazing beings.

Please understand that I am not complaining nor am I trying to be a Debbie Downer, I simply want you to know what it's like for a family with a child that suffers with arthritis. But aside from the medicine box that sits on our kitchen counter, the Humira box in the fridge, the bag of needles in the cabinet, and the sharps box under the sink....you would never know that Jackson "suffers" from JIA. I use suffer in quotations because in all honesty Jackson isn't suffering.  I will not utter the R word because that may jinx the possibility of that happening soon . But that isn't easy either because once the R word is used, Jackson will then start the process of being weaned off everything he currently takes and that can be just as hard on his body as taking the meds in the first place. So while he is currently feeling good, I know that can change in a matter of minutes.

I bet you're wondering why I don't know the cost of the meds, the doctor visits, or the infusions. Here's another hard truth for you, my family is considered low income, and because of that, Jackson is on Medicaid/CMS and they cover everything. I am not ashamed and I am not naive to what this all could be costing my family.  I am forever grateful that my child even has insurance to begin with.

This journey we're on has good days and bad days but ya know what? I wouldn't trade in this life for anything in the world. We have our hardships, we are not financially stable (and really, who is?), I can't buy our children the latest and greatest in toys or electronics but I can love them unconditionally. I can teach them to love in that same way. I can steer them in the right direction and know that along the way they will make mistakes, and I can hope that they can learn from those mistakes. I can be here when they need me and when they think they don't. I can be their mother, pure and simple.

We're together in this journey, forever and always.