The story of Matthew
Matthew was born July 26, 2002, at 41 weeks. Other than a heart murmur, he appeared to be healthy at birth. As Matthew grew and developed during his first 6 months, the murmur became more apparent, prompting a referral to a cardiologist, who recommended we monitor the murmur every 6 months. Along with the murmur, Matthew missed the majority of his developmental milestones. At 9 months after showing some regression, he was referred to a neurologist for testing, then on to genetics after nothing was found neurologically. At the initial appointment with the geneticist at Phoenix Children’s Hospital, Dr. Aleck looked at Matthew and told us he was almost certain he had Williams syndrome but would do the testing to confirm. We received the confirmation of his diagnosis at 13 months.
Matthew continued to miss all his major milestones – he didn’t walk until 26 months, didn’t speak until he was 5, didn’t eat food other than baby cereal and fruit until he was 7 due to sensory processing disorder. He had hypercalcemia when he was younger, has hypertension, and is monitored by a nephrologist. He has mild aortic and pulmonic stenosis, which we thankfully have only had to continue to monitor. He has acid reflux, eosinophilic esophagitis, allergies to milk and egg, and was diagnosed at age 5 1/2 with ulcerative colitis. He also has hyperaucusis (babies crying and kids screaming or playing are the worst for him!) and anxiety that can be incapacitating at times. Developmentally, he’s an incredible reader, but comprehension isn’t great. Money is challenging. Any abstract concepts are nearly impossible. And it’s really hard on him when he doesn’t understand something. He also has an autism diagnosis.
I list all the hard stuff first… to get it out of the way. Because those are just diagnoses, or professional evaluations of him. Matthew is pure joy. He’s changed our lives, and the lives of everyone he meets, for the better – forever. When he was younger, getting IVs started for drug infusions for his Ulcerative Colitis was extremely difficult. He’d scream his head off… then thank the nurses through his tears. He’s joyful, even on the hard days. He has more friends than he can count. He has happy tears daily. He has a deep love for cement trucks, construction, and the color red. He just picked up his red cap and gown, and can’t wait to graduate in just a few short months!
Matthew has taught me so much, in so many ways. And he’s changed my path. As he’s grown, I’ve taken advocacy training and volunteered with a number of organizations that serve those with disabilities and their families. One of the organizations is the Williams Syndrome Association. I learned of them the day Matthew was diagnosed, and they’ve been a part of our lives ever since. In the beginning, they supported us. Then, I began to volunteer, first as a regional representative, supporting local families, holding social events, and raising funds. I followed that by serving on their Board of Trustees. And this year, I joined the staff of the WSA as their Program Manager. It’s been an incredible journey – and I’m thrilled to continue to serve this organization that does so much to serve SO many.
Matthew is an incredible human being. Many days aren’t easy… but he’s strong and resilient. And I’m a better, stronger person because of him. And as a parent, it’s pretty hard to have a rough day when you’re greeted each morning by someone telling you how beautiful you are and that you’re the best mom he’s ever had! 😉 I wouldn’t trade him for anything.