One of my favorite ad campaigns is the Nike “Just Do It” one that basically says quit complaining about your fat ass, just run. Ok, maybe that’s not what it says to everyone but that is what it says to me. Just run. Just go to the gym. Just register for a race. Stop whining and just do it.
When you are thrust into the Heartland ‘Just Do It’ has a new meaning. You aren’t given the luxury of time to weigh pros and cons. You never know how much time is on the clock because it isn’t clear. There are no guarantees and nothing should be taken for granted. You don’t have time to waste.
I don’t ever want to look back at my daughter’s life and say “I wish I fought harder to get better care. I wish I kept pushing for another look, echo, or cath. I don’t want to have regrets if I can avoid them. I live with many regrets, the biggest being not telling my best friend how much she meant to me while she was alive. How I wasn’t there when I could have been. How I should have followed my gut instinct to reach out and tell her how sorry I was that she couldn’t live with me anymore. Instead I am left with an emptiness of what if.
And then years later I get blessed with a child that has one of the most severe congenital defects you can have. Thank God we live 40+ miles away from the number one cardiac center in the world. I don’t have to arrange for transfers, be on the phone with insurance companies begging for better care. Instead we have been blessed with being here but I watch many out there suffer trying to get their children the best possible care they can get.
And I also watch people not understand the severity of their child’s condition and wait too long or do nothing at all. No, retracting isn’t normal. No, Hershey’s isn’t a great hospital when CHOP is not far from you. No, not vaccinating your child with a CHD is not a good idea. No, blue tint to the fingernails and mouth isn’t a good sign combined with no weight gain.
I see moms, aunts, and grandmothers trying to get children they love the care they need and can’t for various reasons. It’s hard to watch. It’s even harder to watch a mother wait on getting transferred until her child is too sick to recover. Even with people giving suggestions and providing help. I wish I lived closer to the city so I can offer what living space I have to someone who needed to be here but couldn’t afford housing. I ask myself every day “what can I do to help someone get here?”
Boston is the reason why Isabelle is doing as well as she is. Period. I know there are other good centers out there, but there is no doubt BCH is a huge part of her success up to now. I want my heart mama friends to have the same success. I want their children to get the best chance possible even when every other center thinks its impossible. I have witnessed too many examples of people who were given another chance here. It’s amazing. The Heart Center has been jammed with patients because so many parents are just doing it and making the transfers happen. Yes, it bumped our surgery a few times but when I think about what other people have done to get here, it doesn’t bother me. And her surgery happened anyway.
Just do it. If something isn’t right with your child and CHD runs in your family, just get an echo. Get a second opinion. Find answers. Don’t settle for less. Your child is worth every effort regardless of what center you are part of. I just know this is true for me. And this applies to my constant complaining about how out of shape I am. Just lace up and head out.
And while I am writing this, Izzie had another famous vomiting spell. It was brutal to watch while I was holding her. This was her second one today. I know it’s normal to have a crazy stomach post op, but this has been crazy. I demanded Zofran after this last bout. Yes, demanded it. Watching her writhe away from me helplessly was enough to get the demands going. No hesitation here. I used to think that my impulsivity was a major defect until I became a heart mom. Now I see it as an asset in certain situations. Like the one we just had a half hour ago.
Moment by moment. There is no time like the present.