We are the Halls! Jeff and I are both psychologists working primarily with children who have neurodevelopmental differences. We have 3 children. Liam is 13, Ronin is 10, and Keira is 6. Keira came to us after a seemingly typical pregnancy, but we soon learned that her brain development had been severely compromised by a congenital infection of cytomegalovirus (CMV). Keira cannot walk, talk, or hold up her own head. Her life has been complicated by many illnesses and surgeries. Most recently, we’ve discovered that she is growing deaf, so Keira is rocking some colorful hearing aids while I take a crash course in hearing loss, cochlear implants, and sign language.
Keira has a beautiful smile, an effervescent laugh, and more spunk than you’d imagine possible for a child with her limitations. Keira loves nothing more than being with her brothers, swimming, and drinking coffee. Black coffee. She has taught us so much about love and life. She helped inspire Idaho’s first legislation to further education about CMV, which is more prevalent, devastating, and preventable than most people know.
In spite of all the beauty we behold with Keira in our lives, it is also chronically stressful and difficult. The best way I can think of to describe our life is that it’s like having a newborn baby all the time. We are always watching her. As a family, we always need help. The needs of the older siblings often get pushed aside.
It is difficult to ask for help in the in-between times. We are lucky to have friends and family who are there for us in crisis, like when Keira is in the hospital. Corwyn’s Cause has made a welcome and measurable difference in our lives. Corwyn’s Cause has truly provided our family with things we didn’t know we needed. Monthly housekeeping frees up a lot of time and mental energy for me to do things with my family that would go undone otherwise, like swimming or an ice cream date with one of the boys. Corwyn’s Cause has provided us with gift cards for St. Luke’s, which pays for meals in the cafeteria when Keira is in the hospital or even a mocha to treat myself on busy appointment days. One of my favorite gifts from Corwyn’s Cause was the Christmas lights they put on our home last year! Christmas lights were something we’d always wanted to do, but it was so far down the list of priorities that it never got done. What a delight for us to see this festive display every time we came and went!
Corwyn’s Cause reminds us that there are other families out there who understand what we are going through, even in the relatively steady/”normal” times. And, through Corwyn’s Cause, we have access to those families. We can message through Corwyn’s Cause on facebook, to get moral support or to find a way to give our used equipment to someone who needs it, or to get advice about where to get the best size 7 diapers in the valley. Families who are associated with Corwyn’s Cause, I’d say, are families who are all dealing with the unique struggle and beauty of raising one or more children whose lives are very limited. We are families who don’t want to be alone, ostracized or forgotten. Neither do we want to be pitied, patronized, glorified, or smothered in platitudes. Corwyn’s Cause gets it because Corwyn’s family is one of us. Corwyn’s Cause meets us where we are. No obligations. No apologies. No strings attached. I know of no other charity of its kind.
Finally, Corwyn’s Cause hosts events for us to all come together. Events for the moms. Events for the dads. Events for the whole family that are inclusive of the typical siblings, too! Keira loved the summer event, where some BSU athletes RAN Keira, in her wheelchair, across the finish line of the race track they had set up. At the winter party, she loved getting to be so close to the live musicians that they could sing in her ear. What precious opportunities Corwyn’s Cause has provided. We can’t thank you enough.