Serendipitous Girl

  Can you imagine living your life being judged and discriminated against for the thing about you that makes you different and vulnerable? Thirty-five years ago, the Americans with Disabilities Act was enacted. July is designated as Disability Pride Month. It's a time to educate the public while promoting inclusion and accessibility for individuals with disabilities. I wasn't sure where I wanted to go with this topic, but two separate incidents this past year have taken up too much residency in my mind. One of them I wrote about in detail a few months ago. Now it is time to expel these lingering thoughts the best way I know how. You travel this journey long enough, and you develop a thick skin. However, that tough exterior doesn't stop the frustration when your child is consistently bullied or excluded because their abilities, or lack thereof, are not the norm. It's been our experience that many individuals who are eager to embrace diversity and inclusion don't want...

  July is Disability Pride Month, commemorating the Americans with Disabilities Act (ADA) that was signed into law on July 26, 1990. Until a decade ago, I took this law for granted. Sure, I had heard of it, but I was unfamiliar with its content. Inclusivity and accessibility are something most healthy individuals take for granted until they break a leg or need surgery. Then, the doors to a world of accommodations you pass by daily without consideration open. Our children are born, and we imagine what their lives will be like. Who will they become? What kind of hobbies will they enjoy? What types of friends will they have? What profession will they gravitate towards? You envision the places they will go, the things they will see and do along life's journey. In the end, none of it matters, only their health and happiness. Except what happens when health is not a part of life's plan? You begin to grieve the dreams you once had. Then you grieve for the dreams your child held dear t...

          Coming to terms with the fact my daughter is disabled was an emotionally challenging road. Although I rarely discuss it, there are still days I struggle with the reality that is her life. A significant part of that struggle stems from the ignorance in the world around us, whether that ignorance is in the form of attitude or lack of education. Today, compliments of the rantings of a political commentator who needs to check her attitude and gain some education, I am fighting the struggle. Last summer, one of Jayde's healthcare professionals, attempting to justify why she felt Jayde no longer needed care, stated, "She went to Chicago, so I assumed she is doing better." If you follow Jayde's journey, you witnessed a glimpse of what it took to prepare her for that trip. Besides being infuriating, the comment was ableist. However, it wasn't the first ableist comment our family has encountered. Sadly, I'm confident it will not be the last.  Jayde-Rhianno...

October is Dysautonomia Awareness Month, and October 25 marks the annual POTS awareness day. Just as no two journeys are identical, the path to a POTS diagnosis is different for each patient. However, as Jayde-Rhiannon and I have discovered, the lengthy road to a diagnosis is usually full of speedbumps and hairpin turns. A month shy of turning forty, I had a total hysterectomy. It was a necessary evil. While taking care of certain parts of my health, my surgery threw me headfirst into menopause overnight. Menopause really should not be a taboo subject. If it weren't, maybe I would not have been surprised by the alien that took over my body, but that is a subject for another day. Insomnia and hot flashes were the worst and lingering side effects of my body laughing and shouting, "You are no longer in your twenties." However, on the plus side, I was told the migraines I had experienced since I was six should see a drastic improvement. Thankfully, they did. Gone were the two...

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 ...

A diagram from Dr. Rowe illustrating  how Dysautonomia correlates and connects to most of Jayde's illnesses. Each trip to Hopkins is full of anxiety. We never know what will change or be discovered. Today's appointment felt like two lifetimes in the making. If I had to choose one word to sum up Jayde's appointment, it would be ' validating. ' Growing up, my joint pains were written off as growing pains. My migraines were dismissed as mere headaches. I stopped seeking medical treatment because I could not bear to hear yet again, "We cannot figure out what is wrong," or "It's all in your head." Although medicine has advanced since my childhood, some doctors practice medicine, while others specialize in it. When I realized Jayde was sick, I was determined my fate would not be hers. I refused to give up on her or allow any doctor to make her feel insignificant by dismissing her. Today was the culmination of all of that. Jayde's comprehensive ...

  The elevator speaks with the sweet voice of a child. The brightly colored art is familiar, like an old friend. While we walk in together, as we have countless times before, she voices, "I am nervous." "I completely understand. After your last experience several weeks ago, of course, you are." She expresses her anxiousness again as the nurse asks questions and takes her vitals. I assure her, "Momma Bear is here. We've got this." Sadly, this was once the only place, other than home, where she felt comfortable and at ease, where people did not stare, question, or judge, and where she knew she could be among her own kind. That all changed six weeks ago. After the echocardiogram was over, I geared up for battle, much like I did a few years ago, right before Dr. Brenner sent us to Dr. Jelin. I straightened my back as I rolled Jayde into the exam room. After the pleasantries with Dr. Brenner, I proceeded to tell him about the past nine months and how Jayde ...

  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 ...

  I am beyond grateful to have my sister, mom, aunt, and mother-in-law's constant contact and their help behind the scenes, being my pillars, supporting me so that I can better support Jayde. It truly does take a village, and these women are my tribe. I know my post from last night was not easy to read. It was challenging to write and share. Yesterday was mentally and emotionally messy. Sometimes, you need to create more chaos to clean up the original mess. Jayde is still struggling to process everything happening inside her body right now, but she is mentally doing somewhat better. Witnessing lifeline helicopters flying in and out at all hours of the day and night helps keep her current circumstances in perspective. Regardless, we know she is where she needs to be to receive the best possible care. To help everyone following Jayde-Rhiannon's journey better understand how we arrived here, she has lost twenty-four pounds in the last several months. In hindsight, it probably st...

  *Update from the 10th floor* From the windows of the 10 th  floor, I watch from above as the world continues to turn. People are living their lives, and I continue wishing that, against all odds, my daughter was one of those people. How do you help someone who is losing the desire to help themselves? How do you force someone to continue to fight when they have fought so hard, for so long, that the fight is all they can now remember. In healthcare, there can be no shortcuts. It is a long, exhausting road. Today, this is where we are. A hospital is the last place any parent wants to be with their child. I want to see my daughter dressed like a princess, going off to her senior prom. I want to see her driving off, feeling butterflies, because she is finally driving. I want to watch her walk across a stage and be handed her diploma. Covid did not postpone these events in her life. POTS, EDS, and SMAS have stolen these milestones from her past and her present and...

Another Update from the 10th floor Covid has eerily slowed the pace, yet the smells, sights, sounds, and walls are all too familiar. The body remembers what the mind attempts to bury. The memories prompt an unnerving yet comforting feeling. I believe Jayde will receive the best possible care in this building, though, after years of fighting an apathetic medical system, my guard is impenetrable. Early in the day on Saturday, Chris, Jayde-Rhiannon, and I were having an emotional conversation. Jayde has not been doing well since last Fall. Every bit of weight she gained after her SMAS surgery, and then some, is gone. Her heart rate, which was once stabilized by her medication, bounces from 55 to 185. The pain she encounters every day has become unmanageable, even with medication. Now weighing 88 pounds and feeling relatively weak, she relays she feels guilty that I still need to take care of her. I responded, "I am your mom. This is what I do. You have NOTHING to feel guilty abou...

 Yesterday was Jayde's first in-home IV therapy. Arriving to this day was not without its share of roadblocks, frustration, and chaos. I think what infuriated me the most was that our insurance covers 100% of everything. We have very minimal copays and exceptional prescription coverage. Yes, I know how fortunate we are. Since Jayde became ill, I am grateful every single day for Chris taking a job that we were not sure he should take. Yet, with 100% coverage, I still had to spar with several individuals, including the president of the Wellspan VNA. Our medical supplies person told me yesterday, "You are one badass lady." I laughed and replied, "I make no apologies for being a Momma Bear." What he said next left me saddened, "Yeah, but most parents would have just given up." My following response will clarify the sadness, "I can't give up because that would mean giving up on her, and that is not an option." A few days ago, I discussed healt...

There is no rhyme or reason. It is 4 A.M, and I sit on the floor beside her, rubbing her back. Except for just being here, I am helpless to make any real difference at the moment. I am the best friend who holds back her hair, except this is not from some stupid self-inflicted debauchery. This is her life. She has chosen to make her bed on the floor. I contemplate doing the same to be closer to her. The regular companions snuggle in around her. They are familiar with what the sounds mean. She is finally asleep in her bed. I check on her one last time. I pull the blankets up to my chin. It is now 7:20. Jayde's bathroom and trash can are once again clean—hopefully, for the final time. The laundry from the night's episode lies in the hallway. It can wait until later. Chris is peacefully asleep. I envy my sweet husband's ability to sleep/snore through anything. The episodes are becoming more frequent. The respite we enjoyed for a year seems like a distant memory. She has started...

This is the speech I was honored to present at last night's Make-a-Wish Cheers for Wishes Gala. I am not the most eloquent of speakers, but since I am a passionate writer, I decided to put pen to paper to help you envision how our family arrived here tonight. While I cannot convey to you what it feels like to be a wish child, I can tell you what it means to be a wish mom. Our family's story is one of hope—of losing hope and then finding it in the most unlikely of places. The word rare is defined as something unusually good or remarkable. Yet, when you combine the word rare with the word illness, you quickly find yourself adrift, desperately searching for answers. In our daughter's journey, we discovered many doctors were hesitant to admit they did not understand what was wrong with her. This behavior only compounded the frustration we experienced from not having answers. However, when your child is sick, that once pointless frustration transforms into sheer determina...