Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, December 15, 2009


When Angela was born, a team of flight nurses quickly prepared her to be airlifted to another hospital. It was during that chaos that the attending pediatrician told her dad, and my parents, that she suspected Angela had Down syndrome.

A few minutes later, her dad and my parents came into the room I'd just been wheeled into after having my belly closed after the emergency c-section. My parents stood at the foot of the bed, and Angela's dad came to my bedside. "Is she ok?" I asked.

"She's fine." he said. But as he said it I glanced at my parents and saw a single tear rolling down my dad's cheek. Never in my life had I seen my dad cry before.

"No she's NOT! What's wrong!" I said.

Her dad struggled with the words to tell me, "Well, they think she might have a little bit of Down syndrome."

Just as I was saying, "There is no such thing as a little bit!" in walked the flight team, with Angela in an isolette. They removed her and placed her in my arms. I couldn't see her face, because they were bagging her to keep her breathing. All I could think to do was turn her hand over and look at her palm. At that single crease that held the truth of her diagnosis. There it was, in all it's glory, deep and plain as day, leaving no room to question if it was a true transverse palmar crease or not. It was, I saw it.

There is one picture of me that day, holding a very tiny Angela (just 4 lbs) with a temperature strip stuck to my forehead and a very dazed look on my face. I don't look like I was crying, and I honestly don't remember if I was. I'm looking into the camera like a deer in headlights. I wonder who took that picture? It wasn't my parents, or Angela's dad. Maybe a nurse? I don't know.....

Anyway, I only held her for a minute before they took her away, loaded her onto a helicopter, and flew into tornado weather to another hospital where the NICU was. Angela's dad followed in the car, and my parents were left standing there with me. Not sure what to say. How do you comfort your daughter in a moment such as this?

"Now it all makes sense." my mom said. "All those kids with special needs you were always bringing home. All those babies you noticed that you didn't know had Down syndrome because you were just a kid, but I knew. Yes, it all makes sense."

She went on. "She's here to teach. She's going to teach everyone along the way that what they thought, and what is supposed to be, is wrong. It doesn't matter who they are, she's going to teach them."

Angela has held true to that prophecy.

First, she taught me about control. I don't have it. You don't have it. None of us have it. We're not in control of our destiny. He is. We can try to manipulate it all we want, and yes, we have free will, but our destiny has already been determined. Angela was destined to be my child, and I was destined to be her mother.

Over the years Angela has taught teachers and educators in general to think outside the box that is "Down syndrome". That not all kids with DS are alike, that there is no such thing as, "Oh they're all so sweet!" Yeah...WHATEVER!

She has taught me advocacy. I *thought* I knew what the word meant, and I thought I was pretty good at it with my boys. But when Angela came along I discovered what the word really meant, and that I had a lot to learn. By the time Angela was 3, I was changing the way our small town school district approached special education, and by the time she was 5 I was changing yet another. And when she was 7 I learned I needed to advocate not only for her, but for me, as a mother, too.

But the biggest area of teaching Angela has been involved in is the medical system. She has broken all their rules. The rules say, "When you have a stroke, it looks like X on the scans." But in Angela's case, the X isn't there, but all the symptoms area. The rules say, "When you have a seizure, it looks like X on an EEG." But Angela broke that rule too, and after two years of my questioning seizure activity, and two years of normal EEG's, her neurologist finally got to see one for himself. "Treat the symptoms, not the EEG" is the rule to follow, not the other way around.

Angela taught her primary surgeon that the rules of wound healing were meant to be broken, and that Angela has her very own timeline.

Angela has taught many doctors that the old phrase "When you hear hoofbeats, think horses, not zebras" does not apply to her...... EVER. She is full of zebras! In fact, I'm pretty sure she's breeding them somewhere. I have learned that when a doctor says something like, "Well, in very rare cases....." That I should start researching those cases, because that's where we're going to end up.

But I have to say, the most amazing thing Angela has taught all around her is JOY. Pure, unadulterated JOY. You can see it when she sits down to an order of french fries, and you can see it when she hugs someone she loves. It is infectious. She melts into you like a warm knife in soft butter, cutting straight to your heart. She delights in thew world around her like nobody I have ever met. Today, after she threatened to arrest her doctor, I watched her, heavily sedated, grin from ear to ear as a nurse appeared out of nowhere with a set of toy handcuffs. The smile was pure JOY.

Yes, I get frustrated with her, just like every mother does. Yes, I get tired of the constant repetition of her favorite game (jail!) or her favorite topic each day. Yes, I want to pull my hair out when she swears or sticks out her tongue for the 500th time that day. But when and opportunity arrises to watch Angela experience something I know she's going to enjoy, I'll go to the ends of the earth to make sure it happens. Because seeing her delight in something like watching a cousin's wrestling match or basketball game, or a dog show, or riding a roller coaster....anything that makes her clap her hands in excitement....does something to my heart that nothing else even come close to duplicating. She has taught me to seek joy in other areas as well.

So, as my mother prophesied 13 1/2 years ago, Angela has indeed taught people a thing or two along the way.


Molly said...

This reads like a love letter to Angela. I love it.

Kathie Brinkman said...

Simply Beautiful Leah.

Sunnie said...

Wowwww what a gift!! (Angela and your blog post)that was one of the most touching things I have ever read. Thanks for sharing!!

Joyce said...

I am melting. There is so much to respond to but I simply have no words. That is just BEAUTIFUL!!!

Artie's Mom said...

Leah, that was wonderful...a look deep into a mothers heart. Thank you for sharing Angela and your love and lives!