But I realized tonight that there are some things I never said. There wasn't any reason in particular for me to not say these things other than perhaps I thought they were obvious and therefore it never occurred to me that these things needed to be said. It was brought to my attention that these things do need to be said and so I am going to say them, because it's important that they are said and important that they are understood.
I am so lucky to have had Wylie. I am so fortunate to be her mother. I am as lucky to be Wylie's mother as I am to be Ethan's mother. Being the mother of these two beautiful children is my biggest source of pride.
Wylie is not her illness, she is not her diagnosis, she is not her death. She is not a stillbirth or a stillborn -- she is my daughter. She is my daughter and I am so fortunate to have had her for the short period of time that I was able to physically have her with me.
If I could go back in time and choose between getting pregnant with Wylie again as she was or with an altogether different baby who was healthy and would have survived, I would have chosen to be pregnant with Wylie as she was and do it all over again. She isn't replaceable. I would lose her over again just to have had her in the first place as having her for a short period of time is hands down better than never having had her at all.
What happened to our family wasn't a sad thing, it wasn't bad luck, it wasn't something that anyone else is immune to. What happened to our family is a tragic loss. What happened to our family is the death of our child due to a severe congenital heart defect.
We may not have been lucky in that our daughter died, but we are so lucky to have had her.
Having to say goodbye to your child forever is a reason to give compassion, not pity. Pity is the reason I refused to attend my high school reunion -- I didn't want to be "the girl who had a baby who died." I am a mother, a wife, a person not unlike you reading this right now. If you ever read this blog and think "I'm so glad that I'm not you" -- well, yes, I am glad that you're not me, too. Because if you were, I never would have known my beautiful son and my incredible daughter and because I had the opportunity to do so, I am lucky.
I will always wonder who she would have been. I will always long to see her face for just one more day, to hear her laughter, to watch her play. I will always imagine what could have been. What could have been if Ethan got to become the big brother he was so looking forward to being, the big brother to the little sister he so very much loved and was waiting for. It was a tragedy what happened, the greatest pain a parent can have -- but my daughter Wylie was a beautiful little girl.
And how lucky I am to have had the opportunity to know her. How lucky I am to be the one who gets to advocate for her and honor her legacy for the rest of my life. I'll wear that honor proudly.