What I would tell CHD Parents as a CHD Warrior
As an adult CHD Patient, one question I am often asked is what my parents did that helped/what I would have asked them to do differently.
I first want to start by saying THANK YOU because, without you, we warriors would not be here today. From your fierce advocacy, sleepless hours next to the bedside, and keeping a constant watchful eye on every complicated thing that living daily with a CHD entails. I owe my parents a debt of gratitude.
After thinking about the question "What would I ask my parents to do differently," I honestly could not come up with an answer. I think that parents, in any situation, want to protect their children. But when it comes to hospital stays/surgery, it's important to know that we understand that the situation is not perfect and that we know that there isn't anything to do to make it perfect. However, there were definitely some things that my parents did that helped as I grew up!
It is always good to talk with your children ahead of time about what to expect. Find out what questions they have and give them answers in age-appropriate terms. What works for one child, may not work for another. Remember, it’s not a perfect situation, so how you handle it will not be perfect either. Sometimes trial and error are necessary. Start small and add information as you need to.
For me, I always did the best knowing everything that was going on. My mom walked me through what would happen during the pre-op day (stay tuned for a fun game that we played growing up) as well as what would be happening during the surgery and throughout recovery.
The Planning Process
Let your child be part of the planning process. It will give them a sense of control and may even make parts of the experience fun. We all face hardships in life, some similar, some different. Hope is what gets us through! We all need something to look forward to. Children are the same. The hospital isn’t fun, but there ARE things to look forward to. One thing that I always loved waking up from surgery was a Slim-Jim. That was something my family and I planned out and I knew that once I woke up from surgery and was allowed to eat, I would have a Slim-Jim waiting for me.
Details matter. I have had 8 surgeries throughout the years and I prepare almost the same way each and every time. Visit this blog post to see how I practice self-care in the hospital or visit this link to download both a child and parent packing list.
Having all that said, remember that this situation is far from perfect, and that's okay. We don't expect you to make it perfect for us. But know that we are so very thankful for everything that you do.