To say that the heart-mom community is a “village of support” is a gross understatement. We are a group of kindred hearts, a force to be reckoned with and a united front when it comes to welcoming new members and teaching newbie heart moms the ropes. We seek the truth and demand untampered transparency of patient outcomes in order to make the best decisions of treatment and medical care for our families. We encourage each other to fight for answers, to talk the talk and to listen to our internal voices when things don’t “feel right.”
I don’t write about my son’s particular diagnosis or condition for privacy reasons, but I do share openly and intimately about the experience of being a “medical mom”. Over the past week I was contacted by two of my best heart-mommy friends, asking if I would share their written words. They trusted me to spread their message far and wide – and I am beyond honored and proud to be the bull horn for “medical parents”.
The following is a letter written by a Canadian heart mom. She wanted to remain anonymous, but no longer silent – and I love her bravery!
She wanted to remain anonymous, but no longer silent - she is a true #HeartMom ! Click To TweetTo the staff treating my medically-complex child,
My child has been in this world much longer than you expected, thus I’ve been in this relationship with you much longer than I expected. If I could break up with you and find someone new, believe me I would (I’m sure so would you some days). But that isn’t possible; we’re in a dysfunctional relationship. If we recognize this together and just come to an agreement in this open-forum on a few things, maybe we can better understand and appreciate and trust each other again. First though, I want to thank you for being in your chosen profession and trying to help people like us explore this uncharted life. Even though I’m angry, distrustful and frustrated, I appreciate you, and I’m glad you’re in our lives. So… here are my thoughts on how we can agree to be in a healthier relationship: (Click here to read the rest published at “The Mighty”).
Share with me in the comments: which “community” is your “village”?
How unbelievably heart wrenching to have to go through what they have. I can’t imagine and am so thankful to have healthy children.
I was born with tapvr type 3…my 1st open heart surgery was done roughly at 10 hours old. I’d only wished that back then my mom had this. I was born in 1990. She didn’t really have anyone to talk with other than the drs and nurses. Being that I was her 1st, she was not only new to this life, but as a mother as well. We still keep in contact with my very 1st cardio team…the surgeons that did my 1st, actually has done all 4 ! It takes a certain type of person to work at a children’s hospital like Children’s Memorial Hospital in Chicago. My mom was forever grateful for several of those NICU/PICU nurses that were with me for the 1st several years after I was born..and as I got older, understand things..being in the hospital often…you form a kind of bond with the nurses that you see over and over. That goes to my Drs as well. I hated when I had to leave Children’s because of age… I’m now seen at Northwestern…but luckily it’s a brother/sister hospital.
Thank you for sharing! It is always uplifting to hear from adults with CHDs – your stories would give peace and hope to so many new heart moms!
Oh wow, I can’t imagine going through that frustration, with people who are supposed to help. I wonder if there are other doctors they can see? I make sure even for regular pediatrician and my own doctor that I trust their decisions. Maybe other doctors will be a better fit. Certainly frustrating, though. There were some weird things about me that only I could find out for myself with little help from doctors sometimes!
Nina – that’s what is so hard for this particular family, they live in Canada. They unfortunately do not have the luxury to pick and choose their own doctors like we do here in the States.