Oct
29
2015
Ryan has Down syndrome. He loves to play ball, being silly, and being tickled. I love that when he smiles, his beautiful almond-shaped eyes crinkle into half moons. I love that he’s seemingly incapable of holding a grudge and quickly forgives.
Mostly we get people staring rudely at him versus asking intrusive questions.
I’m thankful that his disability is obvious from his facial features, especially when he’s behaving badly in public. Once people see him and realize he has Down syndrome, their rude looks usually soften with understanding. I feel for parents of children whose diabilities / special needs aren’t so readily apparent, because they have to endure the disapproving glares of strangers when their child is misbehaving or having a meltdown.
I’m thankful that his disability is obvious from his facial features, especially when he’s behaving badly in public. Once people see him and realize he has Down syndrome, their rude looks usually soften with understanding. I feel for parents of children whose diabilities / special needs aren’t so readily apparent, because they have to endure the disapproving glares of strangers when their child is misbehaving or having a meltdown.
Your child with Down syndrome will be the greatest gift you never would have asked for. All children present a variety of challenges, and those challenges are different for EVERY child, whether typically-developing or with special needs.
I wish they would see him as just an 8-year old boy. He’s rough & tumble, loves Ninja Turtles, sword fighting, dressing up like a pirate, shooting toy guns at his sister. He’s just like any big brother, except he has a bigger heart than anyone I know.
I would love for friends to offer occasional child care, even if just for an hour, and even if just while I’m home so I can get some housework done or go to the grocery.
Oct
28
2015
Olivia is pure joy, simply put. From the day she was born, she has brought happiness to all who meet her. People seem drawn to her amazing spirit. We feel honored to be her parents and truly blessed to be on this journey with her. What was a devastating prenatal diagnosis to receive is now a non-issue for us. Olivia is just Olivia. She loves to laugh, play, and explore just like her peers. Having an extra chromosome doesn’t change that.
Use “people first language”. For example, instead of saying”Downs baby/child” say “baby/child with Down syndrome”. Our loved ones with Down syndrome are NOT their diagnoses.
It really will be ok! Once you meet your sweet baby you’ll be so in love! Down syndrome isn’t what it used to be. Our kiddos can accomplish wonderful things thanks to early intervention.
I hope that people see potential when they meet Olivia, not limitations.
Our friends and family have been crucial in our journey. Knowing they love Olivia no matter what is really encouraging. Supporting inclusion and acceptance with us is a great way to show you care!
Oct
27
2015
Piper is our rainbow baby. Her daddy and I lost two pregnancies before we finally were blessed with the gift of her. Early in my pregnancy with Piper, I thought I lost her twice. But each time we went to the doctor her heart was beating strong. We knew she was special even then. She was strong, she was wanted, and she was loved. She is our baby, our blessing, our light. She likes to eat and sleep, and she loves her mommy and daddy’s hugs & kisses.
That she can consider herself so lucky that God has chosen her to love and care for His most special blessing, a baby more beautiful than she could ever imagine.
To see her beauty as we see it. To see the amazing little person she is.
Educate themselves on what Down Syndrome is, stop being afraid of the unknown.
Oct
26
2015
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.
