It was 21 years ago when I was born and the doctors discovered that I had serious Congenital Heart Defect and Lung Disease called Pulmonary Hypertension. I was born blue and since my mom didn't have any pre-natal care for me, no one expected or had any idea that I'd be as sick as I was. Before my parents adopted me, they were told by a doctor that I had a 13% chance of living to the age of 5. But after 4 open heart surgeries, 45 pills a day, 2 SVN treatments a day, 3 allergy shots once a week, 5 different hospitals, over 20 heart catheterizations, a blood draw once a month, a pacemaker/defibrillator placement and countless doctor appointments - I have reached 21 years of age.
But I did not celebrate it the way most people do. Alcohol mixed with my 45 pills would be an awful combination. On top of that, my heart is already in horrible shape - adding alcohol would be even worse for it. I'm going to be very honest when I say that I have an addictive personality. So what would happen if I ended up liking the taste of a certain alcoholic beverage? It could have the possibility of putting me in a horrible situation. Not only that, but the risk of getting drugged if I were to go out to a bar or a dance club is a problem for any young woman - but those drugs mixed with alcohol and my health; not a good mixture. I also have to think about what would happen if I got drunk? You hear about drunken hook-ups on television shows and the movies. But for me, getting pregnant could kill me; what if in my drunken state I forgot protection? Or what if I didn't bother to make sure my partner was STD free because I was too drunk? The possibilities of how horribly wrong drinking alcohol could go for me is endless. My parents and my doctors have told me this when I reached a certain age and continued to tell me. When I call to re-order one of my medications, the pharmacist is required to ask me if I had my monthly pregnancy test and if I know about having to use 2 forms of protection during sex - yet another reminder of how careful I have to be.
Thankfully I've never really seen the point in drinking or getting drunk. If you hang out with me you'll soon see that I am loud and rather crazy to begin with, so I don't see the need for alcohol to loosen me up or make me friendly. I can have just as much fun sober and then remember all the fun I had the next day - without having to worry about what I did the night before and if it could hurt me down the road with my health.
When I was in the ER a few weeks ago after throwing up constantly, I had 3 doctors ask me if I had taken any drugs or drank any alcohol that could've caused me to throw up like I was. I have fought all my life to live. My parents have fought for me to live. My doctors have fought for me to live. If I was irresponsible, even just for a night - all the hard work and everything my family and I have ever done for me to live would be thrown out the window and done in vain. I value my life enough to not do that. I appreciate all that my family and doctors have done to not do that. I love living, I'm not going to do anything to risk that.
Unfortunately, not all young teens and adults with illnesses (of any kind) have that same view. Some were told not to smoke, not to drink, not to get pregnant and they still do. It's hard when you feel so good too, you feel like you should be able to do these things. I know for me, its hard for me to not go on roller coasters because I feel "normal" so I feel like I should be able to go on one - even though my insides are far from normal. But if those of us who have illnesses want to continue to live - we have to make conscious decisions to do the right thing when it comes to our health.
If you're a parent or a doctor that has a patient or child that isn't following the rules for their health - I sadly don't have a lot of answers for you. All you can do is sit them down and remind them of the dangers of drugs and alcohol mixed with their illness and medications. Tell them that their life and how hard you've all worked for it is more important than one night of drinking at a party. Tell them about how the drugs and alcohol will actually interact with their medications and their illness. Like any other healthy kid - they'll either listen or they won't. In the end, you have to know that you have warned them as much as you can and just hope that when they're at a party and someone offers them a beer, they think back to all the times they've had to fight to live ( and all that you've done for them to live and they appreciate it) and then decide their life is worth more than binge drinking.
If you're sitting there feeling bad for me because I can't go out and get wasted or have casual hook ups - don't. I'm not interested in any of that. I don't think it'd be fun. I much rather go out with friends to see a movie and then go out to eat at 1 AM at Denny's than get drunk or take drugs. I like to remember the fun that I had the night before, I like to be able to tell my family about all the funny things that were said. But most importantly, I like to live. That's why for my 21st birthday when we didn't go out to a bar or my friends didn't take me out to get wasted, I didn't mind at all. Those things don't even compare to Going Trick Or Treating in Disneyland.
I want to thank everyone who has been there for me and my family throughout the years. Your support, your love and your prayers have all helped me get to where I am today. It's such an amazing feeling to know that we can celebrate this amazing milestone together.
Hope and Love