On November 27 we received a blessing-- our baby girl. She was 5 pounds 8.5 ounces of pure perfection. Since she was born, I have received condolences or apologies on two separate occasions. I fear that if I don't address it, I will continue to receive apologies and condolences on the life of my little one. She has Down Syndrome. It is the nondisjunctive type and most common form. It is the complete trisomy 21. There are two other types that are sometimes considered milder but that is really irrelevant here. I keep hearing "I'm sorry" or "let me offer my condolences" in reference to her diagnosis. I really don't understand this. I have been give a gift, Lillie is beautiful and the perfect Lillie she can be. God designed her to be as she is. She was designed to have Down Syndrome. I don't know why. I don't know why God chose our family to give this child to, but I imagine it is to teach us something, and so that we can teach the world something.
Yes, my child has special needs and I was aware of this about the 12th week of my pregnancy. I had the opportunity to have a definitive diagnosis back then through amniocentesis. We elected not to undergo this test because of the risk of miscarriage. Everett and I wanted Lillie no matter what her diagnosis, and were not willing to knowingly put ourselves at risk of losing her.
During her hospital stay at birth they drew blood for karyotyping so that we would know what type of DS we were looking at. We really didn't care, but wanted the diagnosis so that we would know what services and medical needs would need to be met. There is nothing to be sorry for. Lillie is special, and would be regardless of diagnosis. Lillie has a bright future, and I dare anyone to tell her different. She can do and be anything she wants.
Everett insisted she have a particular outfit for her "coming home" clothing. It has pink, purple, and grey elephants and hearts and says "dream big" on it. He wanted her to know from her first trip and throughout her life that she can do and be as she pleases; she need only to dream big.
I am grateful to those who want to offer condolences, but they really aren't necessary. I know that those offering are just saying, "hey, I know life is going to be extra hard for you and I am thinking about you," but life is hard no matter what. Please don't think I am mad at you all, just know that we don't want you to feel sorry for us. I am proud of my daughter no matter her diagnosis. Our lives are different now, and in some ways will be harder, but in many more ways will be better than we could ever imagine. Next time you think you want to apologize to a mom for this, just remember we don't need the apologies, we just want to know that you support our little ones and their dreams. After all, we should all dream big.
No comments:
Post a Comment