The Sibling's Side

On the right side of my blog, you'll see several pages listed that you can click on to read blog posts that fall under that category. One of them is called 'The Sibling Series' which all started when a mom Tweeted me, asking me to give her and other parents some advice on how to teach the siblings about the health issues that their other siblings are going through. In each post, I gave advice on how to make sure they aren't scared of the machines the sibling uses, or how to help them understand what they are going through. I don't think I ever spent a moment though explaining to parents that the siblings of children with special needs have their own needs.
I cannot remember a time when any of my other siblings have been sick and I've had to live at home without mom and dad because they were at the hospital for one of them. I have always been the one in the hospital for long periods of time. My birthday has never been missed because of a sibling who was in the hospital. But my little sister has come to the hospital cafeteria to celebrate two of her birthdays with me. And never once has she ever complained about it. My parents have never had to miss a school production I was in because of a sibling who was in the hospital. But Cami's third grade "Bug Play" had to be missed by my mom because she was needed at the hospital. My sister never complained about that either. 

I've gotten used to being somewhat the center of attention because of how sick I've been in my life. My mom has often pointed out that that isn't uncommon amongst kids who are chronically and critically ill like I have been. There are times in my life when I have needed to be the center of attention because I was in a horrible mess health wise. But like all people who have an illness, we also need to learn that there are other people in our lives and their stories matter too. 

When my parents asked me what I wanted to do for my 21st birthday and I told them I wanted to go to Disneyland, my older sister who was born with a VSD jokingly said, "Man when I turned 21 they didn't take me anywhere!" In response I replied with a laugh and asked, "How many times have you almost died?" "Good point." Was her reply and we laughed it off. But I should've acknowledged that my older sister's story is just as important as mine. Sure it was a joke and we laughed it off... but Dana's story matters too. All of my siblings have stories that matter whether they have an illness or not. 

Reading a blog post by a friend of mine helped me to realize this. My dear friend is a sibling of two brothers who have Cerebral Palsy, while she is the "normal" one. I've posted the link to her blog below and encourage parents of kids who have special needs to read this, along with anyone who has an illness or disability of any sort that has siblings who are healthy. Yes our lives are hard, but lets not forget that our siblings have struggles too and that they are just as important as us.

Please click this link to read a beautiful blog from the sibling's point of view. Claire's Blog

Hope and Love
Becca 

21st Birthday Unlike Any Other

Turning 21 is considered a big milestone in a lot of people's lives, especially since young 21 years old can now legally drink and buy alcohol. But for me - this birthday is a milestone for me for a completely different reason. 

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
Becca 

Music Monday - "Brave"

There are times when we have something we want to say, but for one reason or another, we bite our tongues and keep it to ourselves. There are times when we are used and hurt by the same people over and over again; and all we want to do is tell them that how they are treating us is wrong and that we aren't going to stand for it anymore. And yet something inside of us keeps it inside, bottling it up for their benefit.

As I write this, I am thinking of one specific person in my life who has given everything and then some to the people in her life but she gets nothing but resentment back. For years she has kept her feelings to herself and rarely tells anyone 'no'. When I was younger, I didn't notice the emotional toll that this had on her, but now I do and it makes my heart break for her. This woman has done nothing but helped people who have in turn stabbed her in the back and walked all over her without any concern for her and how she feels.

 So mom, if you're reading this; this song is dedicated to you. I want you to be able to tell people how you feel for once. I want you to be able to get it all out and for the first time ever, do something for yourself and don't think about how it'll hurt someone else's feelings. Tell people how you feel and let them know that you matter too.
To my readers, please do this as well. If you're sitting there thinking that you don't let your voice be heard enough. Or if you think that you've put aside your own needs for someone else for too long, read and listen to this song. Be brave and tell people how you feel. Be brave and take some time for yourself. 

* The words in bold are lyrics that I think are inspiring. 

"Brave" - Sara Bareilles 

You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
And they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave
Innocence, your history of silence
Won’t do you any good
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you

Love,
Becca
 
My Life As A Chronically
Ill Young Adult
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