Finding out my newborn daughter had Down syndrome was probably the hardest thing I've ever gone through. And it's all because of the TIMING. The diagnosis is usually given before you've even had a chance to bond and get to know your baby . . . either prenatally or moments after your child is born. The only thing you do know about your baby is that she has Down syndrome. Not that she's going to love dancing, jumping, coloring, being a sister, smiling, be a fighter, and melt your heart every time she says, "I love you mommy!"
Just imagine if moments after you gave birth, your doctor put your precious infant baby in your arms and went on to tell you about all of the upcoming challenges for your child. "Here's your new baby boy. He's going to be diagnosed with Asthma when he is 2 years old. He'll never be able to be around dogs because of his severe asthma but he'll beg you for a dog and ask you, almost daily, if he can have one when he dies and goes to heaven. He will have multiple trips by ambulance to the hospital where you aren't sure if he's going to make it or not. Oh, there's no reason to cry. He'll surprise you with all he is able to do even with his Asthma. Just try to enjoy your new baby." I use this example because it happens to be one of the challenges my son faces but it could be anything . . . Autism, Diabetes, Seizures, Drug addiction, ADHD, speech delays, learning disability, etc. Every child has their own obstacles and challenges they each face.
Luckily the majority of our children's challenges come after we already know them and it does not define who they are, but it's not that way with Down syndrome. After Morgan was born all I could think about was the Down syndrome. I knew she was a baby first but my initial focus and worries were on Down syndrome more than the baby. It was in the NICU when I noticed all of the nurses, doctors and literature referring to Morgan as "the baby with Down syndrome". It seemed like a mouth full. Why not just say "Down's baby"? When Morgan was one day old in the NICU, Gavin said something that included "down's baby" in his sentence. I told him how the doctors and nurses were saying "baby WITH Down syndrome" and how I thought that seemed like such a long way to say the same thing. He said he liked their way and it didn't matter if it took longer. It was how we should phrase it too. From that moment forward we've always tried to use "People-first language (emphasising they are people first, not a disability). I try to explain it like this to my friends -- We don't say Ryan is Asthma; Ryder is Diabetes. So why would I say Morgan is Down syndrome or a Down's child?
This past week we found out our baby-- not such a baby anymore-- Mia, like her older brother, has Asthma. She was struggling and laboring to breathe on Monday. I took her to the pediatrician's office and she responded to Albuterol treatments. She has been on oral steroids and inhalers this past week and is still wheezing but not laboring like she was those first few days. It breaks your heart to find out your child is going to have challenges with something as crucial as breathing. But it doesn't change who Mia is or my love for her. She's still the same adorable baby girl that she was the day before she was diagnosed, now she just has asthma. Just like Morgan is still my feisty, loving daughter who happens to have Down syndrome.
The goods--pulse oximeter, inhaler and steroids
She fights like crazy when it is time for her inhaler. But it's all fun and games when she's the one in control.
My favorite picture of Morgan and Mia together