Excuse the delay in writing, I’ve been dealing with medical mayhem of all sorts for my daughter. From getting approved for this medicine, to getting rejected for support and care. It’s been exhausting to say the least. I know every parent taking care of a child has this responsibility and it can be exhausting. I also know that having a child who needs more support can get overwhelming to keep up with it all. I am trying my best and feel at times like I’m still running behind.
The biggest frustration is not that I’m fighting for a child to receive care, but that I am constantly battling with insurance, pharmacies, and communicating with doctors on what is best for my child. Using her name and reminding them that I also work and do not have the time to make another inquiry somewhere else. Reminding all these integral parts of her care that we are on the same team. We have the same goals. Consistently being present and knowledgeable with information to support my daughters growth. Being a medical advocate is no joke.
The current climate with healthcare is a prickly one. It’s not for the faint of hearts. It’s full of mayhem.The current climate in medical care blames the patient for having ailments rather than support patients at their most vulnerable time. Medication can be changed without the consent of the patient just as long as insurance covers it. A caretaker has to explain why they need a break from 24/7 complete care of another person’s needs. Laws, rules, processes, and insurance regulations seem to rule care more than the patient best interest. For all its perks you also deal with so much excess drama.
The joy, what keeps me going is knowing that she is getting the best care possible. No matter how hard I battle she is honestly doing the hard part. Sophia takes on the physical toll of her aliments. She does it with such grace, you’d never know. My daughter stopped crying when getting blood drawn at 1 year old. It’s like she knew this would be one of many test, no need to cry. We recently went to a therapy evaluation where she was asked to do task after task, our second appointment of the day. She obliged with no resistance, a little tired but still doing her best at each request. I hold on and do the challenging work of a medical advocate because it is working. She is growing and responding well to all the therapy, medication, and thriving beyond expectation. I give her love and try my best to help her foster relationships with family that will feed her soul too.
This year we are revving up for a big change, one that will allow her to walk independently. This means a slew of test, more therapy, a surgery, intense therapy afterwards, and a cast. It means no swimming for a while, or baths, and a temporary stay in the hospital. It’s championing for a little girl who deserves a chance to move her body to its best ability. I know it’s well worth it so I persevere and move ahead.