We are the Warkentin Family. We are from Northern California and we have three wonderful kids. We come from a musical background so a lot of what we do as a family has some musical element to it. Our kids all love to sing and some of them dance. Our son Elijah has a great ear for music and enjoys the technical side of music- mixing sound and creating music in garage band. We enjoy a lot of local activities in our city that we collectively do as a family. We love to go kayaking together on our beautiful lake and go sledding up in the mountains together. We like to read together and are majorly into family game nights- our favorite games are Monopoly and Settlers of Catan.
How was your family referred to Shriners Hospitals for Children – Northern California and how long has your child been a patient?
Our family wasn’t referred to Shriners Hospitals for Children – Northern California. When my son was born, I spent a lot of time searching the internet for answers and help. I found Shriners Hospitals for Children – Northern California website and decided to take a chance and apply to be seen. Elijah was accepted and his first meeting with Dr. James was when he was 4 months old. He has been a patient for 12 years.
What is your experience of having a child with a CHD?
Having a child with a CHD has been an incredible journey. I knew that I would have to fight for him; I would have to fill out endless forms and papers, I would have to do multiple hospital visits and surgeries. I knew that I would have to invite therapists and specialists and strangers into my home to evaluate my kid. I expected that as he got older, I would have to navigate school with him and teachers and kids, that I would have to teach him how to deal with stares and comments and questions. I expected that I would have to comfort him and talk him through challenges that other kids might not have to face. I expected to cry a lot; I expected he would cry a lot too. I expected to feel isolated and alone. Those were all the things I worried about, walked through and processed.
What I didn’t expect; I didn’t expect my son to be so well loved, so cared for and so seen in the world. I didn’t expect the community of other families just like ours to rally around us. I didn’t expect him to find alternative ways to do things. I didn’t expect him to grow into this charming, warm, amazing, caring human being who was built to show the world that different doesn’t have to be a negative thing. I didn’t expect every teacher he had to love and care for him and protect him and, at times, go toe to toe with others who disrespected him. I didn’t expect his friends to not really see his hand difference, but just to see him for who he is. I didn’t expect the world to look different, to be different because he was in it. Having a child with a CHD has been the most challenging, difficult, amazing, incredible honor of my life. I think you could say that about having a child in general.
How has your child and/or your family adapted to activities?
We love to play card games and board games. This is sometimes challenging for Elijah to keep his cards private (so his brother can’t cheat and see them). We have a cardholder that is a stand and allows him to put all his cards in the holder and look at them and keep them private. He loves it and it makes such a difference.
Caribeaners have been our best friend. We use them to put on our dog’s leash so that he can easily put it on and walk the dog. When he was younger, we used them on his belt loops on his pants to help him pull them up. And we keep a pack of them in our house to use when we need to fashion something to make it work for him. Every year I buy him a new pair of gloves and cut the right fingers off on each glove and sew new seams on them- you can’t even tell the difference. We use magnets for his shoe laces called zubits. They allow us to lace them in place and all he has to do is open and close the magnets to put his shoes on and off. We use the Cat & Jack adaptive brand of pants to help him not have to use buttons or zippers. A lot of clothing companies are coming up with adaptive clothing now, which is great. We have installed door handles instead of knobs on all of our doors in our house that allow Elijah to open and close doors with ease and even quiet when he needs to. We only use deadbolts on the doors so he can easily lock and unlock doors. For legos we use a lego separator that you can get at the store, this helps him be able to pull legos from each other without frustration. We buy nerf guns that have a pull system and have a quick action trigger so that he can play with ease. At school, he uses an ipad for long writing assignments and things that will fatigue his hands.
What would you like new parents of children with CHD to know?
Hi new parent. I can only imagine what you must be feeling as you look at all these pages and words. Sometimes it is enough to make your head spin. Parenting is an adventure that you pretty much have to take day by day. This too, is how you will need to take parenting your child with a CHD. Some days, you will need to be the secretary that makes all the appointments, fills out all the forms, answers all the questions with knowledge and understanding of what your child’s limitations and abilities will be. Some days you will have to educate others on things that your child needs and what is appropriate and inappropriate to say or what laws and rules are there to protect your child. Other days you will have to advocate for your child, you will need to understand the delicate balance of getting other’s attention to make sure that your child receives what is needed but also understanding when not to bulldoze or become “that parent’ that gains a negative reputation. Some days you will have to comfort your child and talk through ways to uniquely problem solve situations to best help them navigate the world or teach them how to advocate for themselves because you know one day they will have to. But most days, you will just need to be there to love on your kid. To look at them with the adoring eyes they need. To teach them how to fish or ride a bike or make them pancakes for breakfast. Most days won’t be any different from any other experience you have raising a child. You have the most amazing gift of a child and what makes them special is not their limb difference, but their heart. They will know that because you see that in them. I always say if I do my job right, when my son grows into an intelligent, advocating, well-rounded adult, no one will ever even know I did my job at all.