The Rantings of a Heavy Hearted Lunatic

"Because I can count on my fingers how many sunsets I have left and I don't want to miss any of them."

So, maybe I don't know exactly how many sunsets I have left, but I know there will never be as many as I wish there could be and that sunsets for me are not even sunsets, but the moments I have left with the people I love.

 Being end stage in a disease, while working towards a way to hopefully prolong your life (a double lung transplant) is an incredibly taxing affair. Physically, emotionally and mentally. You're forced to look at ALL possibilities. Of course, you always hope for the absolute best outcome. One of the things you deal with is people always telling you in one way or another to "think positive only." Well, wouldn't it be nice if life was that easy. Sorry to break it to the vast majority, but, I'm a realist.

Now I know when people say these things, it's usually coming from a place of love and encouragment and I do have dreams and aspirations and plans for my life going forward. I plan on being here longer, if I didn't why would I bother with all the hardship? But if and when things go south, I wanna be as prepared as a person possibly can be, mentally and emotionally.
At the end of the day (my aunt will kill me for using that phrase, my Uncle will beam with pride) it's me who will be in that hospital bed, or on that operating table drawing my last breath and however I need to be ok in coming to terms with that, when it happens, I feel is important.

My biggest fear and the hardest thing I've had to think about coming to terms with, IS leaving and not having enough time with the people I love. I can't tell you how many times in the last year that I've been sitting watching a movie and giggling with the love of my life, or having normal conversation with my son while getting him ready in the mornings, or being surrounded by family, laughing till our stomachs hurt, or gossiping and spending girl time with my aunt, that out of nowhere I feel a punch in the gut and I just look at these people and think  "I'm really going to miss you." You literally feel it in your chest and your gut and you immediately have to avert your thought proceess elsewhere so you don't start to show everyone through your facial expression that your having this internal turmoil. 

 Many times I've been told "Oh you look tired." or "Is something bothering you?" And I agree or just say I'm just tired when the truth is, I'm sitting here in this moment, heartbroken, thankful, and mourning you and loving you all at once.

 On average, people who recieve a double lung transplant get about 5 years out of them. What would you do with 5 years? For me, I'd make sure to live a life that my son could look back on and remember fondly. I'd spend it taking pictures and videos and going on adventures that he will remember for years to come. I'd spend it attending every game, every concert, and making up for all the time I've missed out on while being so sick. I'd be the mother he deserves.

My son, Carson, will be 7 as of June 2019.  That means if I get the call for lungs this year and I get the pretty standard amount of time with the gift of organ donation, my son will be about 12 when he has to bury his mother, that's if I get the 5 years. Can the people who are parents to young children, take a moment, just imagine and please let that sink in?

I am going to blow a huge hole in my babies heart and let me tell you, I cry at least once a day in the bathroom over it. People have told me, "just don't think about such things, you need to stay positive and it's not helpful." But, as a parent,  you have to, whether you want to or not. This is my reality. I have to get myself ready for that while also finding a way to help my child get ready for that very likely outcome.

I also worry that I could be making the wrong choice. That going through with the surgery may be too much or the lungs don't take and that in just a few short months of me posting this, I could be gone. It runs through my brain every day, breaking itself out of the mental cage that I try so hard to lock it away in.

The worst part of it all, is that no matter what I choose, I will never get as many sunsets, I will never get all the moments with my child that we both deserve. I won't be able to kiss his booboos, I won't be able to be there when he's emotionally at his worst, I can't love him and protect him if I'm not here. My son deserves to walk through that door every day to the comfort of having his mother, through whatever he is going through in life.   I fear I wont be sitting in the audience the night my son graduates, that he'll look out into the crowd and something will be missing for him. I'm afraid that he'll wonder what his mother thinks of the woman/man he wants to marry, that I wont be able to meet my grandchildren and that because I'm gone, that something will always be missing for him. I hope he does know above all, that he never has to question if I'm proud, because the answer will be always.

This is all very real for me and I'm thankful that there are platforms that allow me to open up about these things. Such as this blog. I know I'm not the only one out there going through a situation like this. I hope those who read this,  laugh a little harder today, love a little deeper, and live. I mean really live. You only get this one life, don't waste it. Truly. And that if you are in the same boat as me, you feel a little less alone.  

Carson - 16 days Old

And I know many will read this and say "Don't worry so much you'll get those lungs and live a long life!" And as I said, I'm aware you'll say it out of support and love. But I also told you...... I'm a realist and the reality is, these months could be my last. So I plan to make them count!