Jayde's Trip to Chicago and the Fallout

April 19, 2022

It's all a part of the journey, her journey. Compliments of Brett's family, this time tomorrow, Jayde and Brett will be in Chicago. For the first time, Jayde will be flying while accessed. Mama Bear is excited for her yet terrified. It was a rough morning. She has her gummies to help with the pain, nausea, and anxiety while flying. Here is hoping her experience with the TSA is better than when we flew to California and they do not grope her port again.

April 20, 2022

Thank you, everyone, for the comments on my prior post and texts from my dear friend checking in on me last night and this morning. This is Jayde-Rhiannon's first significant trip and flight without us. This morning, Brett's mom, Nicole, drove them to the airport. Then TSA Cares ensured they made it through security without incident. No groping was involved. Jayed and Brett arrived in Chicago before 1:20 our time. For the next five days, Jackson and I are empty nesters. Have a blast, my beautiful babies. I cannot wait to view the Windy City through your eyes!!! 💜 

June 9, 2022

Today definitely did not go as planned. My mother-in-law stayed home with Jayde-Rhiannon so I could enjoy a rare afternoon out with my mom and nephew. However, an unexpected phone call left Jayde-Rhiannon and me feeling an overwhelming sense of betrayal and anxiety. There is nothing like being blindsided, gaslighted, and lied to by part of your daughter's medical team. All the while causing her migraine, PTSD, and mental state to turn from bad to worse.

Apparently, because she went to Chicago for a few days, there was an irresponsible assumption that she must be well. Even though this individual does not have the first inkling of what it took to get Jayde there, how sick she was the morning of the flight, or how ill she was for the two weeks after her trip. Yep, she went to California for her Make-a-Wish trip and to the beach two years ago on a family trip as well. it's a miracle. She must be miraculously healed of all her 15 illnesses. The lesson learned here is that no matter how ill you are if you leave your house or travel, you just aren't sick enough. I have to think whoever coined the term "Invisible Illness" was a genius. Ok maybe not a genius, but probably someone suffering through most of the same illnesses as Jayde.
Also, because I am able to access Jayde's port, even though I can't administer IV medication and have no formal medical training, I should be her nurse. I am her mother, and I will always care for her, but I am not equipped to look for signs and tells that a seasoned nurse is capable of noticing. People who have never met Jayde nor have no idea what she experiences 24/7 are making unilateral decisions for her care.

I am a very logical person. Things need to make sense, and when they don't, it is frustrating. I am furious and sad but mostly heartbroken for my daughter. I am concerned that the betrayal she feels is insurmountable moving forward. I was warned this is the level of care we should anticipate when she transitioned from pediatric to adult medicine, but I couldn't believe it–until today.

June 14, 2022
Sometimes, you must blow things up to make everything pretty again. It's never fun or painless, but it is necessary. Today, we had a meeting regarding recent events. Mama Bear came out to play, making it very clear you do not mess with her cub. One of Jayde's practitioners was dismissed. She was the catalyst of the chaos and confusion. She also misrepresented herself when she told us she understood Jayde's illnesses. Had she been forthright from the beginning we never would have allowed her to be part of Jayde's integral care team.
Now for the positive, a crumbling bridge was repaired in the process, and one of the most important individuals in Jayde's care team is staying. On this journey, we have forged relationships. The closer you are to a person, the more emotions become involved. Amends were made. At the end of the day, Jayde is once again comfortable with her care team and the changes made today. In the end, that is all that matters.


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