I used to be known as Anita McFarland. Now I usually am referred to as Silas’s Mom. Being “Silas’s mom” has changed my life. I used to walk into a room with a quiet anonymity. I’m no longer a mom who can blend in with the surroundings. I enter a room chasing a boy who commands the entire room’s attention. Some days that entrance looks like a train wreck and being Silas’s mom is hard. He wriggles out of my hands or arms and runs wild anywhere we might be… including church, the doctor’s office, or the bathroom at baseball games. He yells things that I can’t understand. He runs up and hugs random men or women on the street or in a waiting room, whether they are creepy looking or not. He flops himself on the floor and uses the full weight of his body to communicate to me that he IS NOT moving another step. He runs a fever for no reason, he sometimes will have a random unexplained bruise, or a cough that lasts for 2 months straight, causing me to wonder and worry and have sleepless nights. These days are the days that WEAR. ME. OUT. These days are magnified by the responsibility of raising a child with a “special ability” (as my daughter describes special needs). I, daily, feel the weight of showing everyone around me that Silas is just like their children. I want everyone that comes in contact with him to know that Down syndrome is not strange, scary or all that different than any other typically developing kid. I want them to know that when he acts “rotten” it’s because he is rotten not because he has Down Syndrome. These train wreck days make that difficult until I remember that I had those same days with my other kids. They had the same “rotten” days. The only difference is that others didn’t excuse their behavior to a disability that they could see.
Then there are days that I enter a room with him and I am reminded of how special it really is to have Silas. These moments and days are filled with kisses, spontaneous “I Love You”s and reaching goals that we have been working on for days, weeks or months, hearing Silas say his brothers and sister’s name as he acts like a typical baby brother. Don’t get me wrong, my other kids and all your kids that were born without uncertainty, without complications, and without special needs (if there are truly children born like that), but having Silas in my life makes this life and my family …. more. He adds a joy that can not be explained or put into 400 words or 4 million words. There is something magical or spiritual, I would say, about loving and being loved by a child with Down Syndrome…. or autism, or cerebral palsy, or any other disability. For all the times that are filled with stress or anxiety, there are 10 more that are filled with excitement, peace, laughter and indescribable love.
Silas has has made me feel scared, unsure, crazy, scared, worn out ….. He has turned me into an advocate, made me feel loved, known, more compassionate, patient, joyful, and has shown me strength and determination. These are only needles in a haystack of what this 5 year old little boy has given me. I would be shirking responsibility if I did not say to the eyes, full of pity and sorrow, who see a burden or a waste of a life or even indifference. I want to be clear. Silas, and all those with differences or disabilities, are important, not only to their moms and their families, but to the culture and the world. These people, these individuals, fill this world with love, beauty, grace, and compassion. These are all things that we will ALWAYS desperately need.
I will gladly give up my name for that. Love, Silas’s Mom
