When’s the last time you stopped and smelled the roses? For us it was September 28th, 2012. The day our daughter Brooklyn, better known as “Boogie” was born. You see, Boogie has Down Syndrome also known as T-21, and 21 has been our Love number. My wife and I started dating on the 21st, engaged on the 21st, found out what sex our baby was on the 21st, and married on the 21st. To us this was destiny. She was meant to be ours in this way. Soon after our minor relief, the doctors informed us Boogie would not be able to feed off the breast because of her low muscle tone, and that they would need to place a feeding tube into her throat through her nose. She will not be released from the hospital when we are, and that a family room will need to be set up if we wanted to stay with her. She will need surgery on her heart within the first year because her heart valve won’t close on it’s own, and possibly need surgery on her intestines. One by one Boogie defeated the odds the doctors had against her. She latched on to her mom the first try, surprising all of the doctors. She was released from NICU the next day into our arms just in time for her first U of O Ducks game. And after the x-rays and ultrasounds, both her intestines and heart came back perfect, with the heart valve expected to close on it’s own in 5 days. 3 days later, as a family, we were released to the world. Boogie was a success story from day one. Like the rose that grew from concrete.
For the next year and half we struggled. We struggled with Early Interventions, the core source for finding in home PT, OT, and speech therapies. Because of Boogies low muscle tone, we pushed her performance a little harder than we probably would have, had we had a mainstream child. I think because of her Down Syndrome we didn’t expect less of her, we expected more, much more. In our eyes, E.I. had set the bar too low for Boogie. Searching the internet and books specifically on PT, OT, and speech for kids with Down Syndrome, we found ourselves more knowledgeable and ahead of the therapists, surprising them with each visit of a new milestone met and conquered goals that were not yet expected. I’m happy to say they have raised the bar for her but we will always keep our bar a little higher. We struggled with the worlds view on us. From family to friends. From strangers to coworkers. “I’m sorry,” were tough words to hear instead of, “congratulations.” More so from a family member than a stranger when referring to our child when we tell them she has Down Syndrome. The look of denial on our friends faces when they say everything will be ok. Kind of reminds me of a crying clown, a happy smile and remorseful eyes. Strangers noticing Boogie not doing what their kid, at around the same age is doing, and asking what’s wrong with her, having to explain she has Down Syndrome. We struggled with ourselves. Overcoming the acceptance of living with Down Syndrome, but carrying pride we are raising our daughter who has Down Syndrome. We have learned to care less what people think of us because of her. We have stared adversity in the eye, not stopping our dreams for her, but expanding them further. We have grown as human beings seeing a world we would have never known if not for her. Down Syndrome is not a haircut, a tattoo, or a pair of shoes. It can’t be changed, covered up, or go in and out of style. Down Syndrome is the heart, the soul, and the spirit of this family, and we love her for teaching us that. September 28th 2012. Yup, that was the day we started to smell the roses and we haven’t stopped since.
A Life Created T21 