It is Monday, the weekend has quickly come and gone. Normally I would be dreading Monday and the routine of the week: Chris is awake at 5 A.M., out the door by 6 A.M.; Jayde is up at 6 A.M., out the door and on the bus at 7:05. There have not been too many cases of the Monday blues for quite a while, today is Jayde’s thirteenth consecutive missed school day. Since January 29th, she has been able to attend five days of school.
Most of her days are spent in bed. If she is not in bed, she is on the sofa and the blackout curtains in the living room are pulled shut. Friday we were able to watch Grease and an old, One Direction movie. She smiles and sings along; occasionally, I hear her laughter. It is beautiful. The movie reminds me of a time when life was simple. A time when a boy band and the sight of Louie Tomlinson or Harry Styles made her squeal in delight. Do not even get me started about the time they came to M&T Stadium and she saw Louie backstage. What I would not give to go back in time, but time marches on…even if my daughter cannot march with it.
You think raising your second child will be easier. Not because of the child, but because you are more prepared as a parent. I am not sure why I ever bought into that logic, but my baby girl has prompted me to reevaluate my thoughts.
March 31, will mark two years since Jayde was officially diagnosed with POTS. These past two years have been a steep learning curve. At our first cardiologist appointment, her doctor explained what POTS was and the many things we needed to do. Most of that conversation is now a blur, except for him telling us, “This is a teenage illness, she will grow out of it.” Realizing she was born with this illness, the chances of Jayde “growing out” of her POTS, are slim to none. After much research we discover, if she is one of the fortunate individuals, she may go into remission. We belong to a large support group, where the patients range in age from seven years old to seventy years old. After more research, I realize this is not a “teenage syndrome.” There are many days I feel as though we are blindly traversing through the world of POTS. If Google was a person, we would be besties for sure. I am grateful for my mother who allows me to vent whenever necessary. Grateful for the individuals whose paths have crossed with ours, because of an illness that up until two years ago we did not know existed. There are over 70 million POTS patients worldwide; POTS is not a rare disease, its awareness and understanding are the rarities.
Instead of obtaining her learners permit, Jayde’s handicap placard arrived in the mail on October 23, her sixteenth birthday. The sad irony was not lost on me. Several days later, her sweet sixteen dinner almost did not happen. She was sick the entire morning and afternoon. I was ready to start making phone calls to our friends and family when she told me she was determined to get through it. Though she made it through her dinner, she was in bed until her cardiologist appointment two days later. At her appointment, her cardiologist informed me her condition was not improving. Many days I am with her 24/7, I do not need a medical degree to know that tidbit of information. Still, we were hopeful things would turn around, particularly when he added a new medication to her arsenal of pills. The week of Thanksgiving Jayde began digital academy. She is in school for her morning classes, then takes three classes online. Pulling Jayde out of school was not a decision Chris and I were ready to make.
I have consistently told both our children, “Normal is overrated. Make your own path, you do not need to do something a certain way just because that is how it has always been done.” The last few months I have felt a deep desire for my daughter to experience a modicum of normalcy. I want to watch her do the many things parents take for granted, until their son or daughter is the child who cannot be a normal teenager. I want her to have the ability to attend school, hang out with friends, participate in school activities, get her first job, teach her to drive or simply watch her sing, dance and be silly like she was before POTS turned her world upside down.
Mid-December Jayde had another syncope episode. By Christmas break we were thankful for a week where she did not need to stress about missed days, uncompleted assignments, and digital academy classes. By the end of January, it was clear this new medication was not helping. Jayde’s fatigue, migraines, joint pains, and nausea were in complete control. Having your daughter tell you, almost daily, ‘I don’t want to live like this,” or “I am tired of being so sick,” is heartbreaking.
Earlier this week, Chris and I met with Jayde’s Assistant Principal. Time to figure out a new plan, one that will ensure Jayde’s education stays on course. These meetings make me anxious. I vividly remember having several of them while Brady was in high school; when the meetings concluded I never felt any better. Thankfully, those were different people, it was a different time and a much different outcome. Though we had explained Jayde’s illness to her Assistant Principal before, this time we started at the beginning. The additional information, allowed him to see the entire picture. He inquired if the doctor had discussed, home-bound education. Before I shared my concern, in the back of my mind I am thinking...I am in no way equipped to teach Jayde high school. Then he explained the difference between homeschooling and home-bound schooling, and its purpose. There goes that knot in the pit of my stomach again. As we walk out of the school, we observed students practicing their sports, others are sitting and talking to their friends. The desire for my daughter to have a sense of normalcy is heightened. I pass a collage of Susky students; many faces I recognize, some I don’t. They all look happy…enjoying life...doing all the things I want Jayde to be capable of…one day. By the time we reach the car, I can no longer hide the tears from Chris; I explain all the things I have been thinking. He responds, “Everyone makes their own path, hers just looks different.”
Later that night we explain to Jayde the decisions made at the meeting. She interrupts me mid-sentence, “When can I get my learners permit?” I look at Chris, he looks back at me, “You might as well tell her now, it doesn’t make any sense to prolong it.” The “it” he was referring to…Jayde cannot get her permit till at least May. By law, she must be syncope free for a minimum of six months, to drive. Though she is obviously upset, she tries to hide her discouragement.
Saturday, I made a Facebook post, “Girls night with my Beauty, dinner, and shopping.” Sounds wonderful, doesn’t it? And it was. It was the first time we have done something like this, in more than six months. My Mommom, not able to comprehend Jayde’s illness, stated, “I am glad she is better and was able to go out tonight.” I did not bother trying to explain, I simply smiled and nodded. Her comment did make me think about my post though. Facebook is merely a glimpse, I wondered how many other individuals had the same thoughts as my Mommom. Facebook cannot show me driving around looking for the closest parking spot because the handicap spots are filled. It cannot show how dizzy Jayde is the entire evening, nor the extreme smile on her face while she tries on the tenth pair of shoes in DSW; just for fun, because today she can. It cannot show the excitement we shared upon finding the perfect shoes to match her prom gown; only to wonder, will she be physically able to make it to prom. It cannot show me arm in arm with her or staying close enough to catch her, just in case. It cannot show that we must break up our time by finding places to sit, fortunately, Vaccaro's has amazing gelato. It cannot show our version of Carpool Karaoke, to 80’s music, on the ride home or that the last song was, “Don’t Stop Believing.” More irony, not lost on me. It could not show the exhaustion she was feeling at the end of our adventure. All these things are invisible, much like her illness.
Sunday, Jayde alternated between the bed and the sofa and back to her bed again. A small part of me feels guilty thinking we should have stayed home, she could have concentrated on school work. The rest of me does not care, for one evening we were able to experience a few hours of a much-needed dose of normalcy.
Reflecting on the past week, I know I can never stop believing. I need to accept while her journey may never look like one of a typical sixteen years old’s, it is hers and hers alone.
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