As part of our Mother’s Day print issue, Candis Hildebrandt shared a little about her and her family, and how her youngest, Kinley was born with biliary atresia.

Can you tell us a little bit about yourself and your family.

I am originally from southern Saskatchewan, and Justin is from Alberta. We have a 14-year-old son Coen, and an eight-year-old daughter Kinley.

Kinley was born with a rare pediatric liver disease called biliary atresia in 2013. We have been living the “medical life” since Kinley was two and a half months old. In this time she has had multiple surgeries (her first one at three-months-old), procedures, liver infections, hospital stays, scans, doctor appointments, therapies, tube feedings, cardiac tests, two liver transplant assessments, thousands of needle pokes including bloodwork and IVs, and lastly a liver transplant on March 3rd, 2019. Her care is primarily done in Saskatoon at the Jim Pattison Children’s Hospital, but she is also seen at The Stollery Children’s Hospital in Edmonton. We have put in a lot of miles the past eight years.

We never could have gone through all this without friends and family to help pick up the slack and help in any way possible. Life still goes on at home while we are at the hospital. Kinley’s dad and big brother would be at home while us girls were at the hospital. Justin would be working to provide for us, and Coen kept busy with school and sports. We wanted to try and keep things as normal as possible for Coen, whatever normal may be in our family.

The amount of support from our community and beyond has been nothing short of amazing, and we are so grateful. Still to this day, we feel the support in many things we do, whether it be organ donation awareness or a toy drive. Thank you to everyone!

What were some ways you took care of yourself during Kinley’s treatment?

Coping and self-care, what is that? Lol. I’m not really sure I did. I’m definitely the type of person who puts my feelings away to be the strong one for everyone in the room. I don’t recommend doing that. If I could go back in time, I would tell myself it’s ok to breakdown, even if it’s in a public waiting room. If you don’t get those emotions out when you feel them, they may never get out.

Kinley’s transplant coordinator said to me before we went home from Edmonton after the transplant, “Take care of yourself. When you get home, you may feel like you have Post Partum Depression.” I thought that was crazy. But I can understand it. Coming home from a hospital stay is hard. Life doesn’t stop while you are gone. You get home, and before you can process what you and your child have gone through at the hospital, you are back to the normal daily activities of running around and taking care of the house. I have always found, no matter how long the hospital stay is, I always go through a few days or a week of trying to regain normal life, and needing time to myself. Even feeling lost. Hospital stays may be slower in that you aren’t running around, but they are mentally and emotionally draining. It’s weird, but the hospital can definitely begin to feel like home in a way.

Posting in Kinley’s Facebook group helped a lot. I think it helped to get everything down, and the support from the members was amazing for me as well. I still go back and read posts and comments, and they still lift me up.

What advice would you offer other parents going through or about to go through what you did?

Reach out to others going through the same thing! One thing that has helped me is the “liver mom” community on Facebook, who I have come to call family. Each child with Biliary Atresia has their own journey with complications. Some of the families have gone through the same as us, some not. But these people are there day and night for you. They have helped me find my voice to advocate for Kinley. They have stayed up late messaging with me in some of my darker hours. I couldn’t imagine having to go through all this without social media. I also wouldn’t know as much about liver disease and transplant without it. Also, just take one day at a time.

What were the biggest challenges and obstacles you faced along the way?

I learned sometimes you have to give up control and accept help. More than once our friends just took over and made sure Coen was looked after while we were away, and took that stress off of Justin as well. I tried my best to organize what I could while two or six hours away and failed terribly. The feeling of not having to worry about his care made it so I could focus on what was going on with Kinley. We are so thankful for all those that have helped in any way. I also think a huge part of being a medical mom is also feeling the guilt from being away from the sibling so much. It’s hard for the child dealing with the medical life, but I think it’s equally hard on the siblings. They are left not fully knowing or understanding what is happening, they are worried, and they are separated from their family.

Also, finding my voice to advocate for Kinley. We really do know our kids. There are many times I’ve wished I had pushed for something to be done differently, or at all. Your child’s life is literally in your hands. You are the constant between many medical professionals, as well as the teacher for seeing ones who aren’t familiar with the condition. There have been times I’ve had to explain why she can’t have a certain medication or what tests need to be done when seeing someone. It could be very easy to slip between the cracks if you aren’t on the ball. I’ve learned to become organized and proficient with Kinley’s medical history and medication.

It’s also been hard watching my daughter have to go through all she has. There is nothing worse than having to hold a scared child for a procedure or poke, or to hand her off to strangers for one of the scariest surgeries there is. She is definitely the bravest person I have met, and she has taught me so much.

•••••••

I think living this life has taught my children a lot about kindness, the value of family, community, helping others, and that it’s ok to be different.

I am really blessed to have these two call me mom, I can’t imagine a life without them.

I am also thankful for my mom who has been by my side at the drop of a hat through all of this as well.

Happy Mother’s Day to all the moms out there!

Candis

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