Lydia: Down Syndrome Awareness Month Project
Lydia is everything I never knew I wanted! She loves to cuddle with her siblings and absolutely lights up when her brother comes in the room. Her biggest smiles come when you need them the most. Her smiles start in her toes and work all the way up to her gorgeous face. If you are holding her, you can feel her body tighten up starting at her feet and then when it reaches her face, there’s that smile! It’s a full body effort for those smiles.
I wish that people wouldn’t ask about her delays. With Down Syndrome, it’s not a question of “if” there will be a delay, but “how much” of a delay will there be. Every child, typical or not, will experience delays in some areas. You wouldn’t ask a typical child’s mom how delayed they are in certain areas, so why ask about Lydia’s delays?
Yes I breastfed even when the doctors at the hospital told me that Lydia wouldn’t be able to. It took her 9 weeks to learn how, but she DID learn how. Yes, she has a heart condition. There is a very small hole between the top two chambers of her heart, but it is so small that her cardiologist won’t see her back for 2 years. I also really dislike the well child check up questions the nurse asks. I always have to say no to most of the questions. I know that she will hit those milestones that they are asking about, its just a monthly reminder that she’s a little behind her typical peers.
Down Syndrome is not as scary as what you have read in books. You have to remember that your child is a child first! A child with Down Syndrome is still a child and will need the same love that a child without Down Syndrome needs! There will be some challenges, but there will be great rewards at the end of those challenges!
I hate the saying, “God only gives special babies to special parents.” That’s simply not true. If it were, 92% of all prenatally diagnosed cases of Down Syndrome wouldn’t be aborted. What I want people to think when they see Lydia is, “Wow, what a cutie!”
Just love us. Love all of us. Don’t love Lydia more than any of my other kids. Don’t love her any less. Don’t love her because she has Down Syndrome, love her because she is Lydia.
Also, I want people to learn the language. The R word is not welcome and should be erased from vocabularies! She has Down Syndrome, sometimes called Trisomy 21. Those are the two accepted ways to refer to her diagnosis.
I’m a huge advocate of people first language. Lydia is a child with Down Syndrome, she is not a Down’s baby. She is not Downs. My biggest pet peeve is when people say, “She doesn’t look Downs.” My response to that is, “Well, I am holding her up and not down.” She is a baby, and like all babies, they all have different features.