Let's Get Real

I follow a ton of heart kids on Facebook, and find myself reading way too many sad, sad stories about these sick little kiddos. And almost all of the parents (myself included) always have upbeat things to say like "It's hard but it's worth it" or "I wouldn't change my baby for anything" both of which I find true, to a certain extent. There was a post yesterday where a pregnant mom found out that her baby has HLHS and was wanting to reach out to other parents. A lot of the comments were really upbeat, positive comments, and I am sure that the mom appreciated those - but it got me to thinking - so much of our journey's are sugar coated. Being a heart mom is a life long commitment to a lifestyle you never imagined yourself having. It is, for the record, totally and completely worth it, however, there is so much stuff that either goes unsaid, or is said with some sprinkles and a cherry on top so it doesn't seem so bad.

So, I want to get real about it. Honestly, if I could change Wyatt, I would. I love Wyatt so very much, but I would absolutely love to be able to turn back time to the moment he was created, so I could ensure that all the genes lined up just right, so he wouldn't have HLHS. Would I want to change the way he looks, or his personality? No, of course not. But I would love to make him a heart healthy baby. Surguries, Hospital Stays, pokes, prodds, echos.....they aren't fun, to put it lightly. Having to see your 6 day old son's chest open because he just had open heart surgery and it isn't safe to close his chest is a sight that no parents should ever have to see. And while you're going through that rough patch, waiting with baited breath at your baby's bedside, a lot of your friends and family stop coming around. They realize that this is a hard time for you, but they don't want to face it, so they don't. Being a heart parent leaves you in this world that few will follow you into. Not many people fully understand why you can't get a baby sitter to go out, why you can't meet up for lunch, why you can't have people over. They don't have to live it, so they don't understand it. Hopefully, you'll have at least one person who fully understands what you're going through, and allows for that pressure on your friendship, because they know that more normal times will come. My best friend has been a rock for me through this, and I am not sure what I would do without her. We haven't seen many of our family members, aside from both of our parents, since Wyatt's Norwood, or even before. It's almost as if people think that HLHS is contagious, and they might catch it. So, here you sit, stuck in your house 95% of the time because your baby can't go to the store, or a restaurant, and definitely not to day care. You spend a lot of time cleaning, with soap, and other disinfectants, to try to keep germs away. You find that you haven't found time to shower in the past 3 days. You see your friends on Facebook going about their lives, and realize that that part of your life has come to an end. When I had Austyn, I could leave him overnight with a sitter and go out. Now, that's not an option for us, unless one of us stays home, and the other person goes out. My husband and I have not so much as eaten dinner out together in at least 5 months. Its just not an option for us right now. And I don't care how strong you think your marriage is - it will suffer. The stress of having a CHD baby is more than you'd ever imagine, and it is going to take its toll. It did to us. We are strong, and we are making it, and we are in love, but it takes work. Add that to your 'to-do' list. Then, comes the money problems. I am not sure what other families situations are, but we were two working parents, and I quit my job to stay home with Wyatt full time, thus cutting our income in half. Add in some new expenses - meds, diapers, formula, medical bills, extra gas costs for all the hospital and doctor visits, and you'd be surprised how much money you spend on soap and disinfectants....so now you're broke. Even if you could get a sitter for date night, its most likely not in the budget. We are currently working on filing our bankruptcy, and working on purchasing a second vehicle because both of our cars now are leased and upside down. Then we're double and triple checking that we will be okay going forward - keeping a roof over our heads, food in the fridge, and gas in the car.  

So in a nutshell, we are lonely hermit crabs who stay home ALL the time, except for a weekly grocery trip. (I have managed to go out twice since Wyatt was born). We're broke, stressed out, and trying to lead a seemingly normal life for Austyn. 

BUT, ideally, after Wyatt has his Glenn, everything will change. He will be SO MUCH more stable, his mortality rate decreases drastically, and he will be able to leave the house. We will still have to be careful to stay away from anyone who is sick, and will avoid places like the McDonalds playplace and Monkey Business, but we will be able to leave. We won't have to check his pulse ox every 3-4 hours, we won't have to fear his upcoming surgery. We will be able to go on a date. I even have plans to go the Rockies home opener with my dad this April. We will still be broke, but a liveable broke. Won't be able to go out and buy a new tv or computer, but our immediate needs will be met. I look forward to spending the summer at home with my boys, and going to the pool (fingers crossed Wyatt likes it!) and the park, and on walks. I look forward to Wyatt touching grass for the first time. Had Wyatt been born heart healthy, I wouldn't have been 'forced' (I did so willingly, ish) to quit my job, and I wouldn't be able to be a full time stay at home mom. I would not get to see my boys grow up as much as I can now. And I am thankful for that. 

Have a CHD baby is hard. REALLY HARD. And there are tracks of time where that is the only thing your life is devoted to. But, it gets better. So, even when you get real about it, in the end, I can still say it is totally and completely worth it. Being Wyatt's Mom has shown me a whole new side of myself, and of life.