For us, there were two times in our lives that were unequivocally the worst: the day Alyssa was born with cystic fibrosis, and the day we lost her.

Actually, there was another day that was just as bad and that was when we had a second child with cystic fibrosis, Tré.

We challenge anybody who has children to find something more important than the quality of life for their kids. We bring children into this world and want only the best quality of life for them. Unfortunately, when your child is born with a chronic, progressive, and ultimately incurable disease that has a reduced lifespan, it changes your whole perspective on quality of life. From birth, your child is in for the fight of his/her life. Every single second of every single day is a fight.

There are small wins but way more losses -- with the largest loss of life coming way too soon. We don't question why because there is no reason to, and there is no acceptable answer. We just bear down and go to work.

The pain of your children knowing their mortality and having to think about it every day is absolute torture. Knowing your children may not experience the wonders of life like getting a job, living on their own, getting married, having children, and simply enjoying life is a dreaded feeling. This is the part that we question: Why should a child have to think about this? That's the part that's unfair. As parents, we would do anything to take this away. Watching your daughter and son fight to have the things in life you enjoyed growing up is completely backwards.

Think about your daughter having to be scared to die, wondering what she's thinking when she hears there are no other options to save her life. Imagine hearing your daughter say that she's going to miss upcoming family events and cry while she's saying it. That was our reality. We watched her struggle to breathe and endure the pain. We listened in anguish when she said she just didn't want to hurt anymore; then when she said she just wanted to go to sleep; and then when she said she had had enough.

This experience alone was heart wrenching, but then we had to think about how our son, who has the same disease, felt watching his sister pass away. We worried about how he would deal with it. Our son continues the fight. He wonders what his life is going to be like. He grieves the loss of his sister, while dealing with his own challenges. He wants to move forward, get married, have children, and be a responsible parent. Yet, he has no idea what CF is going to do to him in the long run. We listen to him as he compares himself to his sister, where he's at in life and where she was at the same point. We listen to him as he tries to plot out his future.

What the hell kind of quality of life is this? It sucks, and it is by no means what you want for your kids.  But to us, it is our lives, and we have had to deal with it.

We decided, be it intentional or instinctual, that we would do everything in our power to give our kids the best quality of life we could.

We did not question, fight, or complain about our lives or our kids. We focused on the now, and we didn't think about the future because it served no purpose. 

As situations worsened, yes, we hated it, but we just handled it when it happened. This is how we stayed sane and somewhat positive. We raised our children the best way we knew how, which is to be responsible, caring, and productive people. We led the fight as fundraisers and as attentive parents and supported them as they took over their treatments.

We never gave up and will never give up. That's what responsible, loving parents do.

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