Kate Detweiler

@katedetweiler | contributor
I'm the proud mama of one Colitis Fighter and one with Cerebral Palsy Power. I love helping to mold other parents' perspectives on raising exceptional children and advocating for children everywhere.
Kate Detweiler

Helping My Son With a Chronic Disease

When a child is diagnosed with a chronic disease, it feels more than unfair. Their childhood is interrupted by hospitalizations; their innocence is stolen by fear of the future and they carry the weight of the world on their very small, young shoulders. When my kindergartner was diagnosed with ulcerative colitis, I quickly realized how powerless we are when it comes to this disease — we didn’t make this happen, our choices are limited when it comes to treatment and we surely cannot control the outcome. How do I raise the heart of this young child who is faced with such a challenge? How should I talk to him about why he has this disease? How can I protect his innocence and how do I instill in him a “survivor” mentality instead of a “victim” mentality? First, we make it normal. Since our son will be dealing with this disease for the rest of his life, it had to become our normal. So we dove headfirst into making it an everyday part of our conversations. We talk about it often and we talk about it casually. We don’t try to hide it, which can foster an atmosphere of shame. We encourage him to talk to his friends, teachers and classmates about what it’s like to have a chronic disease, and we made a cute little book on Shutterfly for him so that he has an easy tool for sharing with others. Second, we educate to empower. My sweet 6-year-old hasn’t mastered the art of tying his shoes, but he is well versed in the location and function of his colon. We created a journal for him called “My Chart” to help him learn more about his body, the process of getting an IV and the names and specialties of the doctors he sees. Knowledge is a powerful tool to help rationalize scary situations. The more he knows, the better prepared he can be. Third, we suit up. Kids fighting illnesses are brave and strong, and nothing makes you feel more like a superhero than a cape. My son loves wearing his custom “Colitis Fighter” outfit when he has appointments, treatment days, or is in the mood for a good jump off the couch. Fourth, we make a difference. Like a true superhero, when he’s on duty fighting colitis he also spreads joy to others by delivering flowers in the hospital or making Christmas cards for other patients. Intentionally thinking of ways to serve others, even amid our own struggles, helps take the focus off our fear and pain. The Colitis Fighter also uses his power to make a difference by raising money to find a cure for his own disease and as a spokesperson for our children’s hospital. Making a difference for others gives meaning to our experience, even when it’s hard. In the words of Christopher Reeve, a true Superman: “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”

Kate Detweiler

The 'Wait and See' of Being a Parent to a Child With Health Challenges

Many parents find themselves in the place known as “wait and see.” Sometimes they’re in this place in a NICU when a baby was born too early and they are told to wait and see if she can sustain life outside the womb. Sometimes it’s after a baby has made it home from the hospital, but they’re waiting to see if he can achieve milestones like sitting or crawling. Wait and see if your child responds to this treatment. Wait and see the test results. Wait and see if the cancer comes back. The wait-and-see place feels a little familiar: This is my family, this is my house, this is my life. But there’s a hazy fog everywhere I go, and it clouds my vision and my perspective. Was that a seizure? Is that normal? Everything I see indicates a problem. Everything is a symptom or a side effect. It impairs my ability to see the future beyond this thing which we are trying to achieve. What is the next treatment if this one fails? How will we go on if our child does not survive? It taints my memories of the past: Did I cause this? Should I have done something else instead? The fog in the wait-and-see bears weight. It is heavy on my shoulders and my heart. Hard to breathe, hard to sleep, hard to wake up. Hard to concentrate on what is before me and what is true. It is lonely and scary and lost to be in the fog. Wait-and-see is a place on the map we did not expect to go and cannot avoid. But there is more to this place if we can learn to see through the fog: Wait and see the strength you didn’t know you have. Wait and see the miracles that occur when your child defies the odds. Wait and see how the world is inspired by what you’ve brought into it. Wait and see how love conquers all and the light that is love shines like a beacon in this dark place. If you’re there, waiting to see — don’t let this time pass without also waiting to see what is good. Let love be your beacon through the fog, and let it lead you to the moments you would otherwise not see: the sweetness of your sleeping baby’s face, the strength that comes from those who are going through this with you, the hope that grows even in the dark.

Kate Detweiler

Skills You Need to Develop as a Parent Advocate

An advocate is someone who speaks or acts on behalf of another. Every parent is an advocate for their children, but for kids with disabilities, a parent advocate is heavily involved in issues related to education and healthcare. If you’re new to the idea of advocacy, here are five skills to practice as you take on the important job of fighting for those who can’t fight for themselves yet. 1. An advocate is informed. Gone are the days when we relied solely on a physician’s instructions. Medical research, online support groups, hospital parent advisory boards and mentorship programs are all available to us for the taking. Sift carefully; not all you read is true, but it’s all valuable. Knowledge is power. Ask questions and learn all you can about your child’s diagnosis, the treatments available and the lawsthat exist to protect your child at school. Knowledge is also confidence! The more you know, the more confident you will feel collaborating with other important professionals. 2. An advocate is a team player. Physicians, therapists, school psychologists and intervention specialists are all part of your team. They have a special education, training and experience you don’t have. Whereas you likely didn’t choose to have a child with a disability, they did choose to pursue the profession of helping and healing children! Your team is in your corner, fighting with you and representing you when you aren’t there. Welcome them, trust them, accept their suggestions and learn from each other. 3. An advocate is tenacious. Situations can occur when a school district is hesitant to accommodate for a child based on convenience or funding. An insurance company may deny coverage that is necessary for your child because they want him or her to fail at other medications first. A doctor may be resistant to try a new treatment. An advocate is willing to fight — with perseverance, facts and opinions, professionally and emotionally. 4. An advocate is not always right. When you’re wrong, admit it. Fix it. Make the changes and try again. Your team will be inspired to show you the same courtesy and humility when they make a mistake. When they do, forgive them and move on. Advocacy is hard work and we all need the grace it takes. 5. An advocate is loving. There is no one better suited than you to advocate for your own child. A doctor might know your child’s medical history, a therapist might know the best strategies to help them achieve their goals, but you know their heart. Don’t be afraid to take on the job for which you are already equipped! There is no one more qualified. Getty image by Sjale

Kate Detweiler

Having Children With Disabilities Transformed Me

I always expected I would get married and have kids one day. I expected we would live our “normal,” middle-class life with family dinners and a few trips to Disney World. I expected to be happy with the life we made for ourselves and our children. I was surprised when my first son, Joshua, was diagnosed as an infant with a bicuspid aortic valve. Having two flaps covering the heart valve instead of the typical three is not a major condition for a child, who just sees a cardiologist every other year and takes antibiotics for dental visits and other procedures to protect his heart from infection. He has no other physical restrictions or limitations, but at his 5-year-old cardiology appointment, I was surprised again to hear that his heart is now leaking blood back into his heart. The summer before he started kindergarten, he was diagnosed with a chronic illness. When my other son, Levi, experienced a hypoxic ischemic event during birth, I was so surprised I thought I was dreaming. I felt like I was watching a movie of someone else’s life as the neonatologist explained what happened during my emergency c-section: his heart rate decelerated, he was born unresponsive so was resuscitated and transported to a nearby children’s hospital, his brain had been badly damaged. He received cold cap therapy to simulate hypothermia to his brain to reduce the swelling and allow it to heal. He spent 17 days in the newborn intensive care unit, and when we brought him home, he had failed his newborn hearing tests, was diagnosed with swallowing dysfunction (dysphagia), and was not expected to talk, walk, hear or see. I accepted having a child with major disabilities, so I didn’t expect that Levi would learn to walk, and then run, and then talk. Levi wears blue braces on his feet to correct his one ornery “pigeon-toed” left foot, but he is determined to keep up with his peers and big brother. He receives some occupational therapy, physical therapy and speech therapy at preschool, but he is exceptionally bright and strong and skilled. I never expected that raising a child who is so fearless and determined would grow me into an adult who is learning to be fearless and determined. I didn’t expect to become so informed about cerebral palsy, therapy, dysphagia, or IEPs, but you can expect that children we raise will in turn raise us into the parents they deserve. There is a kind of cliché that people like to say: “God only gives special children to special parents,” but of course we know this isn’t true. All kinds of parents give birth to children with disabilities: rich ones, poor ones, weak ones, strong ones. Maybe other people go into parenting with the expectation that their children may one day be diagnosed with a heart condition, ulcerative colitis and cerebral palsy — but I didn’t. But I also didn’t expect that having children like mine would create in me a person who didn’t exist before. Becoming a mother is always a transformative experience — our hearts become softer, our priorities change and we can’t believe our hearts can love something as deeply and sacrificially as we do for our children. When you have children with disabilities, you should expect the same. You can also expect to look into their faces and see a future so bright it stings your eyes and stirs your heart to blaze every trail you can with them. You can expect victories and triumphs that swell you with the pride you imagine seeing them hit a home run or graduating from college. You can expect that every part of your life will change, but it can be deeper and wider in the experiences that matter the most: strength of heart.