An Extra Bit of Joy
By Allison Costa
No one is prepared for that moment after birth when a physically exhausted you holds your baby only to realize that he is not breathing. When our seventh baby was born, he swallowed meconium in the sack and almost died from lack of oxygen. After an incredibly healthy pregnancy, this birth complication was shocking to say the least, but it was a freak accident and couldn’t have been avoided. While we were in the NICU waiting for his lungs to clear and to get him off the ventilator, I foggily remember the doctors asking us, “Did you get tested to find out if the baby had Trisomy21?” I replied that we had, and that it had come back negative. But they wanted to do the test again. Our midwife that had delivered him and examined all his ultrasounds and blood labs during my pregnancy, had already pulled me aside after his birth, as he was being rushed to the hospital and told me her suspicions as well. Of course, we agreed to another test. Honestly, when you are praying for your child to live, the results of a genetic test are the last thing on your mind. This time the test came back positive, and we simply said “OK,” and continued to focus on getting him healthy and home. We were fortunate to have had kind professionals deliver the news, many tragically do not. Even with six other children, we didn’t really know what to expect, but after six and a half long weeks, we were able to bring him home. We had had so many specialists consult with us in the hospital and were given so much information about “What he will be like,” “What his limitations will be,” “How he will be so different from our other typical children.” But guess what? They were all wrong. Over the last two and a half years we have consistently seen our miracle baby surpass and exceed every limitation that society has wrongfully thrust upon him simply based on his number of chromosomes. We were told that between his time in the NICU and his having Down syndrome that he would not be able to breastfeed. But I insisted on trying anyway. After 12 long days on a ventilator, I was finally allowed to try and nurse him, and he was a natural!They also told us he would also be very slow to hit physical milestones. But at the seven-week mark—less than a week from his homecoming—our Phoenix rolled over! At 6 months he sat up. At 9 months he crawled. And at 14 months he walked. Phoenix has been a determined fighter since the moment he was born. He is funny, smart, has great fine-motor skills, and he teaches and humbles us every day. He is nothing like the stereotypes I was taught about Down syndrome my entire life. 
I wish I could talk to every new parent who receives a pregnancy or birth diagnosis about Down syndrome. I wish I could tell them that just as doctors and medical professionals cannot predict what challenges and triumphs your typical children will have, they cannot predict what a child with Trisomy21 will do either. Their future is not written in stone. They are not simply the sum of their chromosomes. They are so much more capable and worthy than society teaches us. They have gifts and talents that we can all benefit from. Being Phoenix’s mom has been one of the greatest and most humbling joys of my life. I realize that some children with Down Syndrome do have physical and mental delays or other health issues. But so do other neurotypical children. We know how blessed and fortunate we have been in his tremendous progress and personality. Even this year, when after two years of amazing health he was suddenly diagnosed with childhood Leukemia, a large part of me knew that just as he had defied every other trial and insurmountable odd from his traumatic birth, that he would do the same with this new challenge. While I would wish a child with Down syndrome on absolutely everyone I know—it truly is a blessing—I wouldn’t wish childhood cancer on anyone. However, Phoenix is once again beating the odds! Other than his first initial admittance into the hospital after diagnosis, he has not had any other hospital time during the last seven months of treatment even though we were told he would have several other hospital admissions and be incredibly sick. He went into remission after his first month of treatment, and even though the protocol demands two long years of chemo regardless, he has been navigating it like a champ! Again, our oncology team told us “What to expect” of him, and again, Phoenix has defied all their preconceived notions. At every appointment they tell me how shocked they are at how well he is doing. They are amazed he is playing and active, gaining weight, and progressing physically and mentally despite the toxic side effects of chemotherapy. Although we will be immensely grateful when Phoenix’s treatment is done, it is a chance once again to show others that children and individuals with Down syndrome are amazing! You cannot predict what they will do any more than you can any other individual. When given the right environment for growth, huge amounts of love and support, and the right health tools, they can do wonderful things. In a world where everyone is constantly clamoring for acceptance and equality, still most people see individuals with special needs as “other,” or “less than.” This is not true! My hope for Phoenix is that the knowledge and information about his genetic condition will change during his lifetime, that hearts will change, that training for medical professionals will change, and that inclusion will extend far beyond race and gender and encompass all of those whose genetics might be slightly different as well. No one can predict what these incredible individuals can do, and it’s wrong to label them and count them out
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