"You're in active heart failure." "Don't have any more babies." "Stop breastfeeding your twins." "You need to be supervised at all times so someone can call 911 if you go into cardiac arrest."
Make it your own
It can be easy to become discouraged when you're diagnosed with Postpartum Cardiomyopathy in your 20's. Being told you could die and all of your life plans need to change only weeks after giving birth to your first (or in my case, twins). And you know what? I think it's okay to give in to those feelings for a minute. PPCM is a rare condition affecting only about 1,000 to 1,300 women annually in the U.S. So soak it in. Live it, feel it, accept it. And then make it your own!
Being present and patient
I would never wish for this condition, and I would never wish this condition on another person. But I've learned to see so much beauty through this diagnosis. I feel like when I get stressed with each new hard phase my twins go through, I can take myself back to how hard I fought to just be here and it allows me to be more present and patient with them.
When my boys were newborns, I took my cardiologist's advice and I was supervised throughout the day while my husband was at work. My mom and my mother in law primarily stayed with me. They were kind and made me meals and cleaned my house and helped with the babies. Accepting help was difficult for me, but as I allowed myself to admit that I couldn't do it alone, I found that I had more time to spend with the boys. I was blessed to not have to worry about laundry or vacuuming. I could focus solely on feeding, changing, and snuggling my babies.
My cardiologist also advised that I stop breastfeeding once I was diagnosed with PPCM. He acknowledged that I could likely safely breastfeed my twins while I was on my heart medications, but he advised that I give myself a break and focus on healing. I took his advice and I feel like it worked well for us.
Four years later, and I still feel somewhat haunted by this diagnosis from time to time. Explaining my condition to other healthcare providers, or to other parents when we exchange birth stories, is anything but pleasant. Generally, I'm met with pity. I try to counteract the pity with my own upbeat enthusiasm, but in all honesty, I still feel like I've missed important things in my kids' lives.
I may not have been here
Still, I try to imagine what life would have been like if I hadn't been blessed with the help I received, and the medical care I was given. Life for my family could have looked very different - I may not have been here. Sometimes envisioning that alternate reality helps me to see how blessed I truly am - even with two toddlers yelling at me about not wanting to eat dinner! Finding opportunities to be grateful has been the best way I've found to cope with my PPCM diagnosis.
How have you been able to gain control and change your perspective around your diagnosis? Let us know in the comments below!
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