Advocacy

Parents who have a child with a disability--regardless of the severity--have many challenges. There are routines that are beyond the everyday routines of a healthy child, medications, extra doctor visits, therapies, worries for the future that go beyond the normal worries, and most of all, coping with the dashed dream.

Those are scary things to someone faced with the newness of a diagnosis. And many facing that new diagnosis choose, sometimes because of the coaxing of others, to terminate the life growing within them.

As Trisomy Awareness Month begins, I think about advocacy and try to create my own advocacy stance. Do I educate others about Trisomy 18? Should I go the medical route and do as much as I can to enlighten that community about the quality of life some of our babies can have? Should I take a more extreme approach? They are all worthy choices, but there is one closer to my heart.

Before I explain, let me say that although I am pro-Lily's-life, I am not full-fledged pro-life. I just believe that a woman should be able to make her own decision...which also means she must live with her own consequences. With that being said, however, I will do all I can to share with others the beauty of a life with a child who has a disability and try to convince all I can that it is such a joy-filled life and that it's such a shame to let go of a life like that. So that is my advocacy stance.

But I think there is a bigger shame. Today, I heard the song "You Raise Me Up" on the radio. Part of the lyrics go, "You raise me up so I can stand on mountains. You raise me up to walk on stormy seas. I am strong when I am on your shoulders. You raise me up to more than I can be."

I couldn't help thinking about parents who have children with disabilities and the challenges that have come their way, and I'd bet you that the majority, if not all, of them will tell you that those challenges have made them better people. I know I can say that.

You see, it is through my challenges that God was allowed to raise me up and make me more than I could ever be on my own. I think I could beg people to see it that way. We are such a band-aid society! But by being that band-aid society, we neglect to allow God to work in us to His fullest potential, which so often happens within the challenges. And I find THAT is the bigger shame.

Life with Lily is hard. I have never denied that. But I wouldn't change it for the world. There is so much joy, and I feel God's blessing--not His punishment--in it all, even when life is not going my way.

It just breaks my heart to think that someone would deny herself a life like that.