I was recently asked to contribute to a local newsletter on coping strategies for parents of children with chd. I thought I'd share some of what I wrote here, and I invite all who have experienced something similar to let me know how you cope in the comments. I'd love to hear what you have to say. Thanks!
When we first received Heidi's diagnosis, we were devastated. I cried for about a week straight, and I felt like the thoughts in my head were going around in circles. I didn't know how to get past this thought pattern, so I asked my midwife to refer me to a therapist. The lady she sent us to was amazing. The first thing she asked was what we saw in our lives a year on, regardless of whether or not the baby would have made it that far, hospital stays etc. This really helped focus us to work together on having a vision for our family. We were able to explore what each of us needed (mom, dad, older sister) during this time and how we could ask for it from each other. The therapist also helped us discuss how to deal with different (difficult) family dynamics and how to get through the surgery time.
Once we were no longer in crisis mode (and the voices in my head stopped saying the same things over and over), we focused on preparation. Since we had to relocate Sophine for several weeks, we got busy researching activities, making craft kits, buying books etc. We also spent hours researching Heidi's condition on the computer, talked to other families who had been through the surgeries, and graciously accepted the mountains of food offered by people who wanted to help in some way. Sadly, we also had to accept that some people would walk out of our lives at this point, not being able to deal with our burden. We tried to let them go with love.
Now that we are 5 years into this journey, I find myself focusing on what is normal in our lives. I've given up Heidi's future to the higher powers, and I trust that somehow there is a reason we are meant to experience this. I remember distinctly just weeks before Heidi's third surgery, I was traveling in the car, and it struck me that I had no control and that this was okay. It's so unusual in our culture to strive not to be in control, but I realized that since there isn't a whole lot I can do, I can't spend too much time worrying about it. What I do have control of is giving my children a good, healthy, positive life experience. This is what I try to focus on. I don't restrict Heidi's activities, though we are conscious of germs and emphasize frequent hand washing. Heidi receives chiropractic care and nutritional support to counter some of the effects of hospitalizations and antibiotics. We help her through her medical experiences by being honest with her and asking nurses and doctors to clearly explain to her what to expect, how long it will take, and most importantly, when it is over. These are all things we can do, and they help us keep it positive.
Focusing on our own lives as individuals and as a couple has also helped us come to terms with our situation. Husband has taken up compulsive exercising and is training for his first marathon. I am up to my eyeballs immersed in homeschooling Sophine and my Foundation Studies class, and until recently I took pottery classes every week. We are still working on carving out more couple time, but it's a process.
Finally, I have to admit that I am in denial about Heidi's health issues as much as I can be. For right now we deal with the upcoming catheterization. I just can't think about valves and what might be going on there some time down the road. So I push it out of my mind. I have too much to think about regarding how to make this hospital stay easy on her and super-sensitive Sophine, so that's where I focus my energy.
I'd really love to hear what has worked for other people. Please share!
Labels: chd
