Eager or edgy, or simply both. Is it me or has everyone felt a little more on edge this entire fucking year. I mean, holy fuck 2020 has my bitchiness on overload. Eager for 2020 to come to an end (like many others I’m sure) ✌️ Life doesn’t always go as planned, thank you 2020 for feeling the need to show us this 🙄. For us specifically, medical appointments have been our biggest concern and the constant postponing of appointments gives such an internal frustration and anxiety.
Blood clot in the the heart, your world stops in it’s tracks. We’ve waited for nearly a year for Sierra’s (14, almost 15 sassy year old daughter) appointment to see what our options and future hold. Quick snapshot, Sierra was diagnosed with a blood clot in her right atrium and her world felt like it had stopped. Limitations, medications, diets, are all so much for any child. She’s a competitive all star cheerleader, flying has been her stress reliever (aside from doing the damn tik toking dances 🙄). Medication increase after increase, talk of limiting cheer, the possibility of never being able to do it again, surgery options, all of been on the forefront of stress for the last year.
Life becomes routine, most of us function better with a consistent routine. Everyone may disagree on every hot topic at the moment, but I think everyone can agree that 2020 has disrupted our lives tremendously in one way or another. I mean, not sure how they couldn’t, our lives and daily routines were changed overnight & are still changing but the day.
I’m not a fan of going to Miami, actually I hate it with a passion. The horrible driving, congestion, & extremely fast paced just doesn’t do it for me. Given they’ve been on stricter shelter in place orders and curfews we’ve been unable to travel, until recently. Could we have done virtual appointments, sure, but Sierra has needed imaging done given her blood levels wouldn’t budge on blood thinners and we needed to gain an idea of the blood clot.
As parents we try to remain positive for our children and limit their exposure to negativity, but let’s be real there’s so much damn hate in this world that it’s nearly impossible. Trying to make the best decisions we can with the knowledge we’ve learned can be difficult in a world where technology runs our lives. At a fingertip we are susceptible to criticism with all social media platforms. Some days questioning whether or not we’re making the right decisions, wear a mask, don’t wear a mask, see our loved ones, don’t see our loved ones, go to school, don’t go to school, participate in sports, don’t participate in sports. It’s probably safe to assume that 2020 has taken a big ass toll on many of us, mentally and emotionally.
Remember, this is a 14 year old having to go through these difficult conversations about her heart with doctors. After a year of letting Sierra’s body of control of itself, the blood clot has dissolved and is no longer present in her heart 👏👏 Joy & excitement filled her eyes as her healthcare team was explaining the results of her testing. Not only is her blood clot GONE, like legit GONE, but her team reminded her that just because she has been diagnosed with the same gene that I have that it doesn’t mean that she needs to prepare herself to face the obstacles that I have. It’s simply a roadmap for them, they will be protective and cautious with her so if she were to start showing symptoms they would be ahead of the battle instead of behind it.
Sierra understands the magnitude of her condition, but she’s still a teenager & has hopes and dreams she wants to pursue so of course she couldn’t wait for the discussion about cheer. Well, needless to say, she’s still on conditioning limitations, but she is able to fly to her full capacity. I may be biased because she’s my kid, but Sierra is full of raw talent when it comes to flying in cheer. Doors are wide open for her college cheer goals 👏 👏
We all have those moments where we think “what the fuck are we doing” or “am I even a decent parent”. Some days I’m an awful parent, my patience is nonexistent, frustrated all day, short tempered, & other days I’m happy go lucky, laughing with the girls, listening to them, joking with them. With that said, we all are just trying our best in the world and circumstances we’ve been given.
Thank you to her healthcare team at Nickalaus Childrens Cardiology department, Dr. Kanter, Melissa NPRN, & all the techs she engages with every appointment. Taking the time to have small talk, learn about her, her achievements, her concerns, comforting her, helping her understand, y’all are the real MVP’s in a world of such chaos ❤️