And she drooled pink…..

Parents are uniquely qualified for investigative research.

A beautiful Saturday morning in the McKenzie household- I was giggling with Oz on the couch and Lily was helping daddy in the kitchen. Then I hear my husband say, “What is coming out of your mouth?” In true toddler form, she ran away to the living room as he tried to get a better look at her.

My husband exclaims, I think she is bleeding! As I grab her and plop her on my lap, I see that her shirt is covered in countless drips of a pepto bismal-looking pink. Following her stained shirt up to her mouth, I see her chin covered in the same pink drool and more in her mouth. After a brief debate about the color (I won) we confirmed it wasn’t blood. Unless of course my daughter is part faerie, in which case pink blood may be normal.

The next step was figuring out what in the world it was….this meant a more invasive technique. We chose the lay her my lap and use her toothbrush to help us look in her mouth. Anyone who has ever dared to put their finger in their toddlers mouth, never did it again and probably lost part of their finger! In case you are unaware, they BITE! So the toothbrush dicovered a small clump of pink behind a tooth. We lost the wrestling match at this point though and had to retreat for a minute. A drink of water to flush out the remainder and we were confident that whatever it was, was gone.

But as scientists, and more importantly, still new parents, we were compelled to uncover the source of the pink drool. She could not have gotten into any medicine or chemical. It looked like candy but had no discernable odor like candy. What would dye my daughters drool pink? Since we had ruled out anything dangerous we relaxed and began to gaze around the room.

Then I saw it. Smack dab in the tray of her easel was a pink crayon, with a small chunk missing. It looked so innocent just lying there, silent.

I realize that we are only at the beginning of stories like this and you can believe I will be honing my observation skills!

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Lily is 2 (Part One)

2 years ago I became a mother. 2 years ago the world suddenly became a more dangerous place. 2 years ago I learned what Down syndrome meant. 2 years ago I learned who I can be.

2 years ago I met Lily Luet.

Oh Lily Lu, my little Lulu, how you have grown and changed. I should have known that you would be a firecracker, one who not only plays by her own rules but actually designs the game we play. With each passing moment, each new year, you become more of an individual and truer to yourself. This last year, you have learned and discovered so many new things about yourself and about your world.

You can identify your body parts (including your boobies and your butt) I find people’s reaction to this amusing 🙂 This has led you to an awareness of your clothing and your undying determination to help me with every single clothing and diaper change needed. Whether I want the help or not.

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You are enthralled with books- you understand how to hold them, turn the pages, you know if they are upside down and you enjoy pointing to everything and even reading some of them to me and your brother, although we have no idea what language you are speaking.

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Your hair is longer and I have swept the fine threads of your hair behind your tiny ear so many times that you now return the favor and are quick to move my hair out of my face and tuck it behind my ear. You are so thoughtful.

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You have a good sense of cleanliness now. Your bath time is sacred and you secretly wish you could live in the bath tub. You are thrilled to wash your hands and will bulldoze over any obstacle on your path to brush your teeth. You know where your toothbrush lives and you enjoy a bit of flossing too.

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You are a master of all things pretend. Your little people and little animals live a very rich and funfilled life. They adventure all over the place and enjoy many directives. You are an excellent mommy and big sister – you insist your babies are properly cared for and believe in nursing and baby wearing.

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Anything, and I mean anything can magically change into a telephone. This includes but is not limited to food items, aka the banana phone you made a call on this morning.

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You have learned how to solve problems- if your dress interferes with your crawling speed, simply place the hem in your mouth and crawl on.

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You have discovered the pleasure of stabbing things with a fork and stirring with a spoon. You have also made it your mission to free all the food from their constrained spaces inside plates and bowls. You are their hero. They celebrate your bravery.

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You have learned the value of communication, you sign for more and for elephant. So far you have not asked for both at the same time. You have about 15 words. You talk extensively in your own language but you are trying to teach me how to understand Lily. I am slow and you sometimes get frustrated with me.

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You are trying to walk and take some steps now although it is much more pleasing to you to crawl at such high speeds you can out crawl the dog and cat!

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You are a couch climbing master and are currently perfecting your craft by attempting more dangerous climbs.

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You can draw a mean line. You color like you are divinely inspired but paper is irrelevant to you.

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You hug and kiss and even shake hands – you are very social and out going. People are compelled to engage with you when we are out.

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You sleep in your big girl bed now. You love your bed. You love getting out of your bed. You are still secretly hoping that your dad and I will be fooled by your fake snoring and leave you alone to your own devices under the guise of sleep. In the morning when you wake you climb out of your bed and shout for daddy while banging on the baby gate that confines you to your room.

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You believe the very best way to watch cartoons is standing directly in front of the TV, with your hand down the back of your pant and the tops of your butt cheeks exposed because you believe they need air too.

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You have unleashed the power of your index finger and use it to direct us to comply with your list of demands. Your item of choice must be retrieved and placed in the exact location your index finger directs.

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You have decided that food is not to be trusted and therefore must be immediately refused. After intense interrogations that include, sniffing, stabbing, swirling and smashing, only the very few are deemed worthy of being eaten. Only the raspberries and sweet potatoes passed inspection for your Thanksgiving dinner.

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Lily, my reflections here are unending, as you fill up my life with so many stories, memories, laughs and tears. I am and will always remain proud to be your mother and your guide here on Earth. 

December is a beautiful month filled with blessings and magic but there is a darker side to December. As joyous as a birthday celebration is,  there is another side to Lily turning two. Her turning two also means an onslaught of doctor appointments, tests and evaluations. December is when we must face Down syndrome head on.

To be continued…..

DSAM Day 29: Disclaimer- Lily has Down syndrome

What is Normal?

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I recently heard a quote that, “Normal is just a setting on a dryer.” When I was in middle school I wanted to be normal. When I was in high school, I wanted to be different. As an adult I just want to be me.

One of the first things I learned from the Down syndrome community was how not to offend people by using the ‘wrong’ words. This is where I was told that the word normal is rude and offensive. The proper word to use when describing other children that did not have DS, was ‘typical’. The linguist in me immediately began analyzing what the words actually meant and which word was in fact more appropriate within the context I would refer to. The other part of me rolled my eyes.

I believe in educating people and being tolerant of those that differ from you in whatever way. I believe in being respectful. But I also realize that the majority of ‘typical’ people are not trying to be hurtful, degrading or intolerant when they misspeak.

I personally am not offended when people use the word, normal, to refer to children that do not have DS. When you ask someone what normal is most often they will laugh and say well nobody and nothing is really NORMAL. I still refer to other children as normal, knowing full well that there is no normal when it comes to humans or animals.

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I have noticed how difficult and awkward it is for people to ask questions and speak about Lily having DS. Most people seem so afraid that in their ignorance of DS, they will offend me and thus end up in an uncomfortable or embarrassing encounter so they look but don’t say anything or they speak around the topic. I believe there is merit in learning to lighten up a little- it is more important to me to normalize discussing DS then it is for people to use the correct terminology. I appreciate so much when people come up to me and ask does your daughter have DS? To me that gets rid of the stigma that Down syndrome is hush hush and something bad that we can’t ask about.

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In my almost 2 years of being Lily’s mom, I have learned that the more friendly and open I am about Lily, the more relaxed and forthcoming others are. When Lily and I are out and about, we are approached, often several times, by people wanting to extend their hellos to us and remark on what a doll Lily is. Sometimes they venture a comment regarding Down syndrome, sometimes not. I used to wonder if Lily received so much attention from strangers because they knew she had Down syndrome and were giving her ‘special’ treatment, Maybe they are and maybe they aren’t- Oz seems to generate quite a bit of attention for himself too- perhaps its because I have very happy, outgoing, and friendly children- who wouldn’t want to stop and enjoy a little of that? 🙂

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Now I am not saying that I do not sometimes feel offended or even hurt, I have days that I am much more sensitive about things than others. However, I return to the bigger picture. A world where Lily can evolve as herself, in the wide open, around all the ‘normal’ people without any hushed disclaimers.

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DSAM Day 22: Hemming Pants

I saw a meme the other day that said,

“Hell yes I am short! God stops when his creation is perfect and I just didn’t take as long!”

I read somewhere that the average height for men with Down syndrome is 5’1 and for women is 4’9!  So what does this mean to me right now?

I am hemming pants!

LOL! Lily is now wearing 24 month pants (well at least her waist and hips are!) The trouble is, her little legs are shorter than the average 24 month old! So this mama is dusting off her sewing machine and learning the art of the hem line!

The biggest drawback here is I have to be careful not to buy pants with decorative hems on the pant legs because I don’t know how to hem those yet!

All of that aside, I am so happy she is growing healthy and strong!

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Once Upon a Time….

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There is important talk about inclusion with children with special needs in mainstream classrooms. (I will talk more about that on another post) Even though Lily does not attend school yet, she has many activities she attends and all with other kids her age, not her disability.

Her current favorite activity is reading her picture books. She can thumb through each page and happily points to different items asking me, “What’s That?”. She varies from saying the word to making the sound that goes with the picture and sometimes will sign as well.

Every Wednesday we go to story time at our neighborhood library and Lily gets to check out new books to bring home and play with her friends. Now that Oz is attending story time with her, she enjoys reading books to him at home. Only this time she doesn’t bother asking him. “what’s that?”- she just tells him!

Lily also attends a museum babies class at the Gilcrease Museum, painting classes and music classes held at various libraries and a host of play dates! She receives no special treatment and always enjoys herself!

 

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Fish are friends, not food!

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Okay so maybe some fish are food- especially in stick form 🙂

Since Lily was 4months old, I have been taking her to the Aquarium. She was fascinated with all the lights and the glow of the water in the tanks. Down syndrome affects the overall ‘tone’ of the body and people with Down syndrome have ‘low tone’. This doesn’t mean they are not strong or have muscles, just that the tone of those muscles is low which makes some of their muscular responses react slower.

For Lily, when transitioning from a light to dark environment, her pupils would get huge. This is something that happens to every child, but Lily’s pupils would linger a little longer than the norm. This made her look like a child in absolute wonder of the world. I would stop and just stare into her eyes, hoping to catch a little childhood wonderment myself.

Now, at almost two years old, she still adores the Aquarium and points to the fish and pets the turtles and peers deep into the glass with her baby blues to see the wonders of the ocean.