Down Syndrome and the People Who Already Know.

October is Down Syndrome Awareness Month. There have been other years where I've posted facts about Down syndrome every day on Facebook. Or tried to post 31 days on my blog to help raise awareness.

But this year?

I dunno.

Down syndrome is beautiful and hard and rewarding and isolating and freeing. It is colorfully woven into the fabric of our family. Down syndrome shapes some of my fears and offers me surprising joy. It is a contradiction of emotions and a simply complex aspect of our life.

Sometimes Down syndrome comes up in casual conversations. And it almost always comes up in my most heart-felt conversations. Down syndrome and all that comes with it is planted deep in my heart. It is difficult to explain how having a child with Trisomy 21 changed everything and nothing at the same time.

Would I have ever gone to a Buddy Walk without my Miss Banana and her extra 21st chromosome? I want to say yes to that...but the true answer is that I never went to one (or had even heard of one!) before Miss B was born. I openly admit that--other than the text book information in my Human Biology classes--I knew nothing of Down syndrome.

Zilch.

But other people know. People who don't have a sweet and sassy Miss B waking them up every morning. People who's hearts are open and changed simply by meeting my girl or someone else in the worldwide Down syndrome family. People who don't need to be given the gift of a child with Down syndrome to know that it is a Gift.

They already Know.

These people reach out. These people include my girl simply because they love her. They see and are drawn to that inexplicable magic she brings with her. These people speak up for her. They protect her. They drop everything--literally--to search for her and make sure she is safe. They cry with us. They laugh with us. They celebrate with us.

They Know. 

They care. They inspire me to look around and make sure I am being the support to others that they are to us. To put it simply, they love, no matter what.

 To all of you that already know, Thank You. Thank you for caring. Thank you for opening your homes and your hearts and your arms to my little lady and anyone else that has designer genes. Thank you for changing the way you talk and for using respectful words. Thank you for overlooking the shortcomings we have when the worry becomes overwhelming. Thank you for sticking with us when our life is messy. Thank you for your enthusiasm and encouragement and celebration for all of our successes. Thank you for sharing with us the graciousness and courtesy you share with everyone else. Thank you for understanding The Sameness and The Difference that comes with Down syndrome.

We could not walk this journey without you.

Please keep on being a warrior for Miss B and everyone else with Down syndrome. Please keep accepting. Please keep advocating. Please keep caring. Please keep loving.

I know you will because you already are. 
You already know.

Happy Down Syndrome Awareness Month!!

Adventures in Educationland: First Day.

First day of school.

 Whoa, Nelly. When did T-Man get to be such a handsome guy?? He started Orchestra this morning and had to be at the middle school an hour before his siblings (then he gets bussed back to the elementary school). For some reason, this makes me feel like he has gotten incredibly old between 4th and 5th Grade. Oh, how I love this little man of mine!

 Fearless decided to photo bomb T-Man's before school pic.

Nice.

T-Man laughingly disagreed with the antics.

 This little lovey is the one that every time I think about spending a whole day at school makes me want to grab her and run away to the beach where we would splash in the waves and fly kites all day long for the rest of our lives. Oh, how I love this little lady of mine!

 This little monkey insisted on holding his sign upside down. Trying to get him to take a "regular" pic is pointless. We embrace the silliness instead. Oh, how I love this little man of mine!

 

I tried to get a picture of at least two of them together...but Miss B would have nothing to do with that.

 And so we headed off to school...where Fearless walked into his class, sat with his friends, and barely said goodbye to me. As I watched Miss B walk into her class, my throat caught and the panic started settling in. There are TWENTY NINE kids in her class.

Ohhh Boy.

She sat right down, started on her work and was totally happy to be there...I was bawling in the commons. I almost pulled a Marlin from Finding Nemo and grabbed her and said maybe we'll just try again next year. But I didn't.

This is the best thing for her, right?

Tell me yes.

Tell me this was the right placement for her.

Still can't breathe...

Adventures in Educationland: Can't. Breathe.

The other night I had a dream where Miss Banana and I were walking in the shallow part of a lake. She was holding my hand as we enjoyed the water lapping at our legs. All of the sudden, we slipped under the water and it was as if we were riding a slide down into the lake.

At first it was fun--the water whooshing past, sunlight filtering through the warm water, smiles and giggles from my girl.

But we kept sliding and sliding--rushing deeper and deeper into the lake. The temperature plummeted. The water became dark and oppressive. Panic overwhelmed us both as we were deposited on the bottom of the lake with an unceremonious thud.

Can't. Breathe.

I grabbed my girl and frantically started pushing to the surface. The tears from both of us were lost in the surrounding water. I kicked and swam and reached and fought hard to get us to the surface.

And just as the water was starting to get warmer and light was shining through, I woke up.

I didn't get to find out if we made it to the surface or not.

Back in reality, I was shivering and panicky. Earlier that evening, I had been talking to Dr. C about Miss B starting fully included Kindergarten in a few days and how I feel as if we are throwing her into the deep end and hoping she'll swim.

I am sure my dream was a reflection of those worries.

Miss B is cute and funny and smart and happy. But Miss B is also largely non-verbal, will run to the next state if given the smallest opportunity, and struggles to stay on task.

What will Kindergarten be like for her?

Can't. Breathe.

Will she make friends? Will her teacher and aide "get" her? Are we sacrificing academics for inclusion? Am I expecting too much from her? Am I expecting too little? Will she tell someone when she needs to go potty? Will she steal food from the other kids when their food looks more appetizing than hers? Will she be a full member of the classroom? Will she be seen as the baby? Will she get sick more often? Will she work when she's supposed to work? Will she be too tired? Will she follow the rules? Will she answer questions? Will other kids take the time to try to learn what she is trying to say?

Will she be happy?

Can't. Breathe.

It begins MONDAY.

Can't. Breathe.

FIVE.

On this day five years ago, I woke up early on that drizzly Monday morning, knowing it was time to go to the hospital. My due date had come and gone the day before and I had an induction scheduled for Thursday. But my little lady was ready to come NOW.

At the hospital, I was excited and terrified. We knew Miss B had Down syndrome. We knew Miss B had a congenital heart defect that would require surgery soon after birth.

We knew that we really knew nothing.

It felt like we were just holding our breath. Just waiting for the vast expanse of possibilities of what her life could be like to narrow down into what her life would be like.

Could she die during birth? 
Could she die during heart surgery? 
Could she run and play and have friends and talk and be happy?

We didn't know.
We didn't know anything.

And now...five years later...

We still don't know but we have a lot better idea.

We know that life can be unexpected. We know the weight of all-consuming worry for a child. We know the halls of hospitals and we know to make friends with the nurses. We know the patience needed while anticipating the next milestone. We know the joy of celebrating every achievement. We know the acronyms that swirl during meetings about the education of our child. We know the best hugs. We know princesses and pink and skirts and dresses and love of new clothes. We know enthusiasm. We know sign language. We know speech therapists, occupational therapists, physical therapists and the differences between them all. We know true friendships. We know how to accept help. We know stubbornness and frustration. We know The Magic School Bus. We know Barbies. We know how to play. We know that when it's time to sleep, sleep. We know that an extra chromosome is not a big deal and is a huge deal. We know differences and similarities weave the world together. We know the possibilities are endless. We know happiness is a choice. We know there is a lot more to learn.

We know that our Miss B will go far in her life and we are blessed to be along for the ride.

Happy Birthday, Miss Banana. You rock our world.

Other Medical Adventures: More.

Dr. C and I made the pilgrimage back to Iowa last week for my first check-up with Dr. Brains in over a year. The good doctor had wanted to see me one year post-op, but since I was largely pregnant with little Miss Z at the time, we rescheduled to one week after Miss Z's due date.

But when Miss Zell decided to take her sweet time leaving her first home, there would have only been 5 days between her birth and when we would have to take a 5 hour drive with 4 kids in the middle of winter--and Miss Z was struggling to gain weight, was tongue tied, had/has milk protein intolerance...plus it was just a few days before Christmas.

Not happening.

So we rescheduled again, this time having to wait all the way until last week.

Dr. C and I were fairly confident that this was just a routine check-up...I'd do my relaxing MRI...we'd schmooze with Dr. Brains a bit...and then back home before Dr. C had to be at a meeting for work the next morning.

All was going according to plan...

I fell asleep during the MRI.

(Yes, it's true. Even though it is wicked noisy and sounds like they are trying to jack-hammer your head. But I'm a mom...and when you get the chance to lay totally still for 45 minutes with no one asking your for anything or needing anything from you...you sleep. Just a fact of life.)

The tech didn't pull me into the Sad Closet again, so I knew I had passed the first big hurdle and that nothing major showed up on my scan.

We dropped the girls off at our friend's house (the boys stayed with my sister) and headed into Dr. Brains. I had a few questions for him...just some symptoms that I thought were a little off...but that I was 98% positive he would tell me were no big deal and were just my new normal.

The nurse took Dr. C and I back to the room, we were cracking jokes, thinking it would all be over in a few minutes and was it really worth the 5 hour drive just to have Dr. Brains tell me I was fine?

But then the nurse asked me if I had any questions...so I told her about my little oddities that I wanted to talk about.

And she kinda stopped joking after that.

I honestly didn't really think anything of it because I AM FINE.

Dr. Brains walked in and asked me to describe in detail my symptoms. As soon as I was finished, he immediately told me those symptoms were NOT NORMAL and that I WAS NOT FINE.

He called a neurologist and consulted with him a bit about me, determined that I needed to have and EEG done and that I needed to see the neurologist for more follow-up.

As an after thought, he told me my MRI looked great, my brain had mostly expanded back into the big spot where my alien had been and that he didn't need to see me again for 2 years.

Gee, thanks.

So now, on to more testing!
On to more doctors!
On to more pictures of my brain!
On to more wondering what is going on inside my head!

Here's hoping that Dr. Brains is just overly cautious and that it his concerns are nothing more than that.

Oy.

More.

Layers.

When I was growing up and we would drive the 17+ hours to visit my grandparents' house in Utah, I fondly remember sitting in their living room listening to the chatter...Grandad telling stories about growing up on the ranch in Colorado...Gram sharing her opinion on domestic things...favorite family stories retold with embellishment and laughter and love. When I went to college and lived a scant 15 minutes away from them, I would visit them for dinner--which was always fabulous.  Gram would take me into the kitchen and put me to work, teaching me about lighter-than-air dinner rolls and that there should always be freezer jam ready to use. After the abundant meal (including dessert--Grandad would try to convince everyone that we should eat dessert first, but Gram would always make him wait until the end) we'd move into the living room where Grandad would teach me about politics and economics and living the Gospel...with Gram sharing her experiences and life lessons alongside him.

I miss them.

So when my Grandad passed away last spring on Miss B's birthday, a few years after my Gram had passed away, and their house had to be sorted out and sold...the only thing that I wanted was a picture that had been hanging on the wall in that living room for as long as I could remember. The picture is made up of several pieces of paper, each cut in different ways, then layered together to make an image of a bouquet of flowers.

As a child, I would stare at that picture for hours during the family talks...amazed by the intricate cutting...trying to figure out what each piece of paper would look like if they were separated...fascinated by the layering all the pieces together to make one beautiful Whole.

It is all I wanted to remember them by.

My mom didn't tell me that she had gotten this picture for me. I thought it was gone. But when she came for Miss Z's blessing day...she brought it as a baby gift for our new little one.

To me, it represents my time with them. It reminds me of the layers of family history and and our relationships...my grandparents...my parents...me...my children. Each generation layering a complex and beautiful addition to the final product that is our family.

When we were expecting our little Miss Zell, we wanted her to have a connection to the layers of our family history, which is why we choose my Gram's name for Miss Z's middle name. It was our way to line up those layers of our family--to continue making that beautiful Whole with our children adding their layer to the top. It was inspired and surprising and perfect to have this picture be the baby gift for my Gram's namesake.

While I wish that my grandparents could have been here for Miss Z's blessing day...having my favorite thing to remember them by was as good as I could get.

My sister, Whitney, and her family, my parents, us, and Dr. C's parents. (Whitney's husband was taking the picture).

Miss Z wearing the blessing gown that my mom made for me when I was blessed. Miss B also wore it for her blessing day. That dress also has layers.

Could she be any cuter? No, I think not. Too bad she screamed through her whole blessing though!

There is something inside each of us that wants our personal journey to add another layer to the complexity of life stories that came before us while also adding another layer for those that come after us to build upon. It is a part of us that yearns for a link to our past and a connection to our future.  As we add layer after layer--our parents' story, our parents' parents' story, our children's story, our children's children's story--we make a beautiful Whole picture.

Miss Z is just beginning to add her layer and I am excited to see what it will look like.

Surfacing.

When I was little, my sister and I used head to the pool and try to recreate that scene from Disney's The Little Mermaid where Ariel first bursts out of the water after she gets legs. For those of you with small children at home, you know exactly what I'm talking about.

For those of you aren't in the Disney-movie stage, here's the synopsis: Ariel, the little mermaid,  is suddenly given legs and lungs by the sea witch and she frantically rushes to the surface of the ocean. When she emerges and takes her first breath as a human, she triumphantly flips her hair and begins her new life.

Yeah, I kinda feel like that. Except with less sparkles.

Having a new baby and readjusting all the family dynamics in the middle of a very long, cold, snowy, germ-infested winter was kind of like being dropped into the depths of the ocean.

Without scuba gear.

And, as a bonus, there were sharks that came in the form of sleepless nights, baby-feeding woes, milk protein intolerance, reflux, mastitis, and just plain ol' exhaustion.

Anytime you add a new little person to your family there are some growing pains. And Miss Z had her share during the first six weeks or so. In fact, those first six weeks were downright brutal.

As in sunk-to-the-bottom brutal.

Not that we didn't have fun while we were visiting the bottom of the ocean. Because we did.

There was the annual chocolate-dipping activity:

 And our Christmas Eve clam chowder dinner.

Followed by new pajamas for Christmas Eve.

(Wow. This picture is really yellow. I should edit it and fix it. But, since I'm thinking I'm doing good just to upload it, editing will not happen. Sorry folks. You'll just have to imagine our life not quite this yellow.)

And of course we celebrated Christmas.

 And then took our time cleaning up after Christmas exploded in our living room.

Dr. C finished building our entertainment center. I went to a furniture store, picked out an entertainment center that I liked, Dr. C looked at it, drew up some plans, bought the wood, and built this for me. He even endured some crazy cold out in the garage while he was sanding/staining/sealing it so that it would be done by the time Christmas break was over.
Isn't he a gem?
Love that man.

We broke out all of our college blankets and held mini-indoor-tailgating parties while we watched copious amounts of bowl games.

This one is from when Mizzou won the Cotton Bowl. Go Tigers!

And we cried when football season was over.

We made Rainbow Loom bracelets like they were going out of style. (Which they probably are...) 

Even Miss Zell got into that trend.

 And sometimes we wore Miss Banana out until she reach just tried to catch some shut-eye wherever/whenever she could.

Miss Zell kept growing and turned one month old.

And Miss Banana worked hard on learning to write her name. (She's almost there.)

Miss B also decided that from now on, she can bundle herself up when she goes outside. This is what she came up with.

And the whole time we were trying to have fun inside--trying to breathe underwater as we adjusted to our adorable little Miss Z...it kept snowing.

And snowing.

And snowing.

And SNOWING.

But thankfully, this is a slow time of year for Dr. C's job, so he's been around more to cheer everyone up.  

(Or at least to make sure that I didn't drown.)

T-Man worked hard on his Pinewood Derby car and took 3rd place for his car "Gold Rush".

And Miss B and I browsed Pinterest to find new hairstyles to try.

Valentine's Day Heart Hair

I didn't even realize that she had stuck her tongue out at me until I was downloading the pictures from my camera.
Sassy little lovey, isn't she?

While Miss Z learned how to smile.

And suddenly, two months had gone by with this new little love in our family.

And now, finally, it is March. Spring is around the corner, my friends, and I think we are going to make it. And despite the fact that the wicked arctic cold is upon us again, I am ready to emerge from our polar plunge in the deep, flip my hair triumphantly, and join the human race.

(Which really just means that I will take a shower every day, vacuum my house, and cook real food. I might even be bold enough to go grocery shopping. 

Impressive, eh?
 
Hey, it's a step in the right direction.)

Ariel would be jealous.