Sometimes Mamma Bear Needs to Make an Appearance


This morning, Jayde-Rhiannon and I spent an hour and a half with her primary care physician. During a phone call with my mom on Tuesday night, she inquired about Jayde's upcoming visit. I told her, "If you hear an explosion from the Cracker Barrel area of town, no worries, it is just your daughter." She laughed but wholly understood.

Thankfully, there was no big explosion, just two much-needed mini outbursts, one from Jayde, the other from me. After Jayde informed her doctor, she did not feel she was receiving proper care. I went into great detail regarding the mismanagement of her health by almost all the physicians involved. I finished with, "I am watching my daughter wither away right before my eyes. Either you will be the doctor who figures this out while helping her heal, or we will find a doctor who will. If this is out of your scope of expertise or you are too booked to take time to focus on Jayde thoroughly, please speak up so we can find someone willing to help her." She sincerely apologized to Jayde, strategized with both of us, increased Jayde's weekly infusions to three times a week, wrote down her cell number, and sent us to the lab where Jayde had thirteen vials of blood drawn.

For Jayde to receive proper health care, Mamma Bear needed to come out to play. I wish that were not the case. However, it is not the first time, and I am confident it will not be the last, though you will never hear me making any apology for advocating for either of my children. This morning, I barely contained my pride as I quietly observed Jayde assertively using her voice, advocating for herself. Most days, her brain fog makes her incapable of thoroughly advocating for herself, but despite how poorly she felt, today, she roared.

We are still unsure precisely what Jayde is facing. We only know it is autoimmune in nature. Unfortunately, autoimmune diseases are the great chameleon in the medical world. Their trademark is to hide, morph, and change in the blink of an eye. Many more tests and appointments are to follow, hopefully keeping our Baby Girl at home and out of the hospital.


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