Recently, a family member of mine (who shall remain un-named) saw that I had changed my profile photo on Facebook to one of my daughter Madison while on ECMO following her heart transplant. I will admit that it was a little disturbing although not anywhere near as graphic as some photos I have of her. It was my profile picture for all of CHD (Congenital Heart Defect) Awareness Week. I stood tall, proud, and strong with my other heart friends out there and let the world see a glimpse into what it is that these kids go through. It was my hope that seeing the photo would inspire others to talk about CHDs, to raise awareness and rally for research. Most people, while they didn't necessarily enjoy the photo, knew why it was there and what purpose it served.
Not this person. She called me up in a state of fury such as I have never heard. Spewing vile comments and horrible accusations, she informed me that I should not be a parent due to what I had "done" to Madi by posting that picture. The words "sick and disgusting" came up a lot, as did the effenheimer. I was shocked and horrified and more than a little hurt. The last words she said to me before I could swallow no more of her venomous rage were that she wanted to know when I was going to let Madi "stop being the girl with the new heart and let her live her life." My answer? Never.
Now, let's get this straight first and foremost. I would do absolutely anything for either one of my children. I am unbelievably grateful that they are my kids, and thank God every single day that they are here. I know how incredibly lucky we are, as so many of the children born with a CHD do not remain on this earth for very long. All that aside, a heart transplant is not a fix.
The long and short of it is that we simply traded one set of problems for another set. Madi will remain on some form of medication for the rest of her life. She faces many battles that others don't necessarily have to deal with such as increased risk of infection and a very significant possibility of cancer, kidney transplant, and possibly another heart transplant somewhere down the line. Don't get me wrong, we do everything in our power to not dwell on such things.
Tell me this, though: how could it not be in the back of your mind at some point just about every day when you have to start every single day taking your own child's blood pressure, temperature, and weight. When you have your very own stethoscope (and we aren't talking from a Fisher Price playset either) just so you can check to be sure your child's heartbeat sounds like it's supposed to. Or when you have to dole out horrible-tasting medication to your baby at least twice a day and watch her gag it down, knowing that it's for her own good, but that she isn't quite at the point where she understands that yet.
I have done every single thing in my power to be sure that Madi has as normal a life as she possibly could. I have researched, questioned, and pestered the hell out of cardiologists, nutritionists, teachers, therapists, and other transplant families. Madi gets in-home therapy 3 times a week to deal with her significant developmental delays. We have become nothing short of germaphobic in order to protect her immunity. I do this all happily, so that Madi can experience as many "yes" moments as I can manage for her.
I have become nurse, teacher, therapist and nutritionist on top of mommy to Madi. And I do it gladly.
A friend of mine recently showed me this poem called Welcome To Holland and it resonated so truly to my own life that I have come to think of my cute, cluttered home in Blaine as my own personal Holland. And I am truly, totally okay with it.
Don't get it twisted around: I do what I do not to hold Madi back, but to let her fly-to the real Holland, to the moon-wherever.
That is, if she wants to.