Who am I and why are we here? I’m Lara. I’m 46 years old, a retired special education teacher, and the twice divorced, single mother of two boys, Shawn and Ryan. I suffer from anxiety, depression, PTSD and a giant bone spur in my right heel. Currently and unfortunately, I am a stay at home mom. My favorite authors are Jenny Lawson and J.D. Robb, my favorite singer is Toby Keith, and my favorite song is “I Will Rise” by Chris Tomlin. My hobbies include cooking, baking, reading, Facebook, and playing Farmville 2: Country Escape. Oh, and I like goats.
Shawn Alexander Morales is 16. He is a sophomore in high school, and to borrow his phrase to describe himself , “It’s alright being me. I’m good enough at sports that I’m not the last person picked for teams, but I’m not the first person picked, either. I’m good enough at most stuff.” He’s good enough at school, could be better. At music, however, he excels. He is a percussionist, on the drum line in his high school marching band. This past marching season he played snare, because the tenor was too heavy. He plays drum set in Jazz Band, and most of his solos are on the Marimba. He plays Timpani in his percussion ensemble , and I think in some of the concert band stuff too, but I’m afraid to ask, because if he told me already, I will be in trouble for not remembering, and if he didn’t already tell me, I will be in trouble for not asking sooner. Lose/lose. He is college bound, talking right now about majoring in Music Education at University of North Texas. He is just getting ready to start Driver’s Ed, so lucky you, if you stay with me you will be along for that ride (pun absolutely intended). In his spare time he plays Xbox. Loudly. He has ADHD, and is the most literal child I have ever met. He is also one of the most responsible, trustworthy, reliable children I have ever met. He’s mine, and I get to keep him.
Ryan Anthony Morales Stop Doing That Right Now, What is WRONG With You is 10. He was born Ryan Anthony Morales, but things have evolved, and 3 names wasn’t enough. So now he has more. Ryan has Down Syndrome. The Karyotype says it is Trisomy 21. But Ryan also has Relapsed Acute Lymphoblastic Leukemia, and when he was initially diagnosed, back in 2008, Cytogenics (cell studies) were run, and “normal” leukemic cells were found in his bone marrow. To break that down, Leukemic cells, by definition, are not normal, but some of them did not show the extra chromosome that Trisomic children have. I could have pursued genetic testing, to really see if he is a true Trisomic Down Syndrome or a Mosaic Down Syndrome, but in the end it didn’t matter the label, Ryan himself defies labels, plus we’d have had to travel to Dallas to get more testing done and I dislike traveling, so we left it be. However, the reason for this blog, the reason for my current unfortunate stay at home mom status, and the reason for the general chaos that is my life, is that on September 16, 2008, Ryan was diagnosed with the above-mentioned Leukemia. He underwent 1,177 days of chemotherapy, going off treatment on December 7, 2011. On June 16, 2015, he relapsed, so now we are doing it all again. Let me tell you about Ryan, before you start to get all squishy and teary-eyed. Ryan is a happy-go-lucky child who loves music, dancing, and bubbles. He sees the hospital as his second, or maybe first, home, and the doctors, nurses, CNAs, and other personnel are his extended family. Dr. Carcamo, who is his primary oncologist, is his self-reported best friend. It is difficult to describe Ryan, but you will quickly get to know him. He is a free spirit, that wild pony you don’t want to break. And he might be part kangaroo.
I am sure that you have lots of questions about the Down Syndrome and the Leukemia, but I don’t want to weigh this down with too much of that. The stories will come. But there is a shorthand, if you will, that comes with the medical aspect of this, because who wants to write “Precursor-B Acute Lymphoblastic Leukemia” or “Methotrexate Induced Leukoencephalopathy” every time you need to say it? Certainly not autocorrect, which thinks I mean Metbotrexate Induced Leak pence pal I pay by, which isn’t even a thing. So the next post will be the medical shorthand, the acronyms, so I don’t have to strangle autocorrect. On the subject of autocorrect, yes, occasionally I might mean ducks. But probably not often.
I hope you will stay with me. We will laugh together, cry together, swear together. I promise.