Parents Meghan and Matthew Wilkinson approached first-time parenthood like most parents, with mix of excitement, worry, fear, and love. Casey and Connor, identical twins, were born at 36 weeks into Meghan’s pregnancy and soon after they were born, were taken to the special care nursery. They had not yet held or kissed their new babies when their doctor told them in a sweet, soft voice she had suspected that Casey and Connor both had Down syndrome, a one in a million chance that both twins would both carry an extra 21st chromosome.
“I looked at the doctor and all I could say was OK. I smiled and said it didn’t matter- that I loved you both and that you were my sons,” Meghan wrote in a letter to her sons. “Inside I was reeling and in such despair. I wondered how this could be happening. I was young, had no family history of anything like this and had a healthy pregnancy.” A few days later when tests confirmed Casey and Connor’s diagnosis Matthew consoled his young bride with the simple words, “Hun, they are perfect.”
Casey and Connor are now three, have a beautiful baby sister named Reagan, and are taking the world by storm. The past three years of life have been full of difficulties for the Wilkinson’s. There have been nights of sleeplessness; fussiness that comes along with teething; frustration when they became mobile and got up the stairs faster than mom or dad could chase them; picking up their cups when they threw them on the ground, over and over; and the biting phase. There have also been wonderful moments. Their hearts overflowed watching them sleep at night, seeing them take their first steps, hearing their giggles, hearing them say “Dada” and “Mama” for the first time, being proud of them for going to preschool. They have met a wonderful group of other parents that have given them lifelong friendships.
If that sounds like a life with “normal” children, yes, their lives have been rather typical. There have also been challenges that Matthew and Meghan have encountered as parents with children with special needs. They have experienced generalizations about their children, looks of pity, have been the recipient of cruel and vile words, and been told about the things that their children can’t do. They have a newfound resentment and awareness of the “r word” and stiffen with hurt and disgust when they hear people use it, whether they mean it as an insult or not.
Summit DD met Casey and Connor, and their parents, when they were one month old through the Early Intervention program. Matthew and Meghan have had a few extras thrown into a typical schedule, such as physical and speech therapy twice monthly, feeding clinics, blood work, orthopedics, x-rays, ECG’s and struggles to understand what their children need when they are nonverbal. When you meet them and their adorable children that is not what you see, you see unconditional love, patience, and a smile on everyone’s face. Matthew and Meghan will tell you that having a child with Down syndrome has changed who they are for the better.
Besides trying to be the best parents they can be and facing parenting with humility, Matthew and Meghan have dedicated their lives to spread awareness about all individuals with developmental disabilities. “If I never do another thing in my life I will have made the world a better and more beautiful place simply by giving life to my little miracle men,” stated Meghan. “It wasn’t a choice- it was a privilege.”
Meghan and Matthew would offer some advice to other parents that we can all follow to further understanding and acceptance for all. First, be proud of your family and show the world that your children are blessings, regardless of how they are labeled. Second, believe in your child and never accept status quo, don’t let others dictate what they can do. Third, speak up if someone uses the “r word” and tell them that the word is offensive. If that word is used on the radio or TV show, write letters and encourage others to educate people on the impact of that word.
In between preschool, taking care of Casey and Connor’s baby sister, working, going to college, Special Olympics Young Athletes, volunteerism with Summit DD and the Buddy Walk, educating medical students, church, and life, Matthew and Meghan live full and happy lives and they wouldn’t change a thing. Casey and Connor have given them clarity and a purpose, and a thousand laughs along the way.
One thing I am learning is that not all people are ready for the new generation of parent who is raising a child with Down syndrome,” explained Meghan. “We are the ones that refuse to hide our children behind closed doors, put them in institutions or have them sequestered solely in special education classrooms. We are the generation of parents that share the joy our kids bring with the world, we fight for inclusion and understanding, and we demand respect for the precious gifts that we have been given.”
If you would meet Casey and Connor, you would always remember their smile and the sound of their giggles. If you saw them dance, you would smile every time you heard the song. Casey and Connor are true miracle men and their lives have made a difference in this world.