“Stellar Spirits are often found in imperfect bodies.”
The world was graced with a stellar spirit on February 20th, 1990. It wasn’t until the week before Raymond was born that we found out he was going to be born with Down syndrome. I say “we” as if I were actually there, when in reality I wasn’t even thought of yet. But I’ve heard the story so many times that sometimes it feels like I was there. He was born at 7:29 am, weighing 5 pounds and 7 ounces. He was several weeks premature, which we thought might happen considering my mom started having early contractions at 32 weeks. The doctor prescribed her with medication and bed rest to try to prolong the labor as long as possible. That treatment worked for only 4 weeks until my mom went into labor on Monday, February 19th, over a month before her due date.
As soon as Raymond was born, there seemed to be nothing but bad news. He was premature, underweight, he wouldn’t eat, and he was jaundice. He was also born with a heart condition (which my parents had already learned during an ultrasound) called an AV Canal Defect. This meant that the wall was not fully developed between the upper and lower chambers of his heart and he would need open heart surgery as soon as possible. However, being born at only 5 pounds and 7 ounces, the doctor said he was not strong enough to undergo the surgery. He would need to weigh at least 6 pounds before they would allow the surgery, which presented another problem considering he was not eating. They continued to tube feed him at the hospital and after 2 days, he still would not eat on his own. My mother always tells me this was the second hardest moment in her life (we’ll discuss the first later) because after 2 days, she was released from the hospital but Raymond was not. Her and my father had to go home alone; with no baby boy in the arms to show off to the world.
They went back and forth to the hospital daily to try and convince him to eat. After a long, exhausting week, my brother was finally able to come home on February 28th. He still didn’t weigh enough for the surgery, so he had to be put on a medication called Lasix to keep his heart from swelling. My parents had to give him the medication 3 times a day or else his heart would continue to swell up, leaving no room for his lungs. Almost a month later, he finally made it to 6 pounds and was scheduled for his open heart surgery on March 21st. This is where the hardest moment of my mother’s life comes in.
When they arrived to the hospital, my parents were told that Raymond would probably be there for at least 30 days, especially since he was so small. Before my mother handed Raymond over to the doctor (here it is), he told my parents that my brother had a 50% chance of surviving the surgery. With tears in their eyes, they handed Raymond over to the doctor and waited. Luckily, the surgery went extremely well. Raymond was in and out of the hospital in 9 days. Yes, that 30 day procedure only took Raymond 9 days! The doctor had nicknamed my brother, “tank” because he was so strong and handled the surgery so well. Finally, my parents could stop holding their breaths and let out a sigh of relief.
Around the age of 9, the teachers and aides at Raymond’s school noticed that he was going through a lot of changes behaviorally. His personality seemed to be constantly changing. So, the school suggested that my parents meet with a specialist to see what was going on. The specialist interviewed my parents and Raymond, both separately and together, and it was determined that he was on the spectrum; he had Autism. He was on complete opposite sides of the spectrum, which was a huge internal struggle for him. People with Down syndrome are usually very loving and affectionate. However, on his side of the Autism spectrum, he wants to be alone and doesn’t want to be touched. So, he is constantly switching between both sides of the spectrum, which is probably what was causing his behavior problems. The specialist suggested putting him on medication and my parents refused. Instead, they tried recreation therapy through his school and through outside sports programs.
Now, at 24 years old, Raymond is still participating in recreational activities such as bowling and basketball. He is no longer in school (he graduated in 2011) but he still goes to a day center Monday through Friday so that my parents can go to work and my sister and I (yes, there’s a third one) can go to school. This blog will feature all of the famous “Raymond Stories” that I can think of, told from my perspective as a younger sister. So, if you’re looking for some laughs, a ton of smiles, and some occasionally tears, be sure to click the follow button. You can “share” Raymond’s Stories by using any of the icons below. Also, feel free to connect with Raymond, by clicking on his social media icons on the About Me page. 🙂