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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Empty Box of Tissues

….We have emerged from the depths of woe and despair and are healing with a smile now….

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The last week and half has felt like a haze and athough I think I see the light at the end of the tunnel, I am afraid it may just be that freaking freight train others have spoken about!

Okay so I am being both vague and a bit dramatic but having two very sick children and next to no sleep for over a week will make one a bit battle weary.

Now I have been through pnemonia with Lily (twice) and the stomach bug (once thank God) and I have had the pediatrician tell me that on average kids can get sick up to 6 times a year (!) so I wasn’t niave nor necessarily optimistic about winter rolling in. Let me say this here….I was not prepared for the illness that struck our household.

The New Year 2014 found all four of us in poor health and at the nearest pediatric urgent care. Yep, January 1, 2014 we rang in the new year with RSV in tow.

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RSV for a two year old and a 6 month old is just about as much fun as it sounds. Here is what I have learned this last two weeks:

1. My children are stronger than I am.

2. Sucking snot out of a toddler and a baby should be an olympic sport. I mean seriously- wrestling with one hand trying to keep away their hands and hold their head while trying not to hurt them with the restraint AND get the job done?? Yeah I think I could get a bronze medal at least.

3. I can make up a “Take Your Medicine” happy song in a flash. Half of the time the technique works and I dont wind up with sticky bubblegum flavored ibuprofen all over me.

4. I really can just keep going on no sleep. although I seem to be only going in circles some days.

5. Repitition offers both hope and despair. Take temp-give meds-clear nose-do breathing treatment- rock to sleep-put back to sleep after coughing fit woke them up-try to make them eat or at the very least drink something- repeat.

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I know this is a whiny little rant blog post but I have been tested this week. Watching our daughter beg to go to sleep just to be awakened moments later by a terrible cough or watch your infant son cough so much and so hard, he vomits. I never really understood sickness before- never truly understood how a little virus could injure a person or cause death. You hear all the time that the very young and the very old are so succeptible to severe complications from illnesses but it hit home watching my two navigate their way through this and I will honestly say that I became moderately afraid.

Being an older parent, I like to think that I am more relaxed as a person, as a mother. I listen to my gut, I approach things scientifically as well as emotionally…so yeah, none of that held up this time. I ended up taking Oz to the ER twice and Lily once. All for valid reasons but I felt that stupid, over dramatic parent fail feeling.  Luckily both children never got too severe that I couldn’t continue caring for them at home, which was such a relief.

Now I sit here typing while my son lay next to me sleeping (still with a raggedy breath) and my daughter sleeps in her bed across the hall. The house is filled with sounds of humidifiers running. Looking around I see eveidence of the epidemic everywhere- tisssues strewn all over, empty syringes laying in bizarre places only proving how ridiculous of a feat it was to give the medicine. The nebulizer that occupies our table in the living room, the random assortment of medicines (both natural and western) in every room of the house and of course the ever-growing mountain of dirty laundry testifies to our week. The promise of hope? Hope lies in the sound of my children sleeping- peacefully-at the same time. Which means I should try to end this silly little post and join them in slumber. I have greatly missed the sandman and welcome his embrace tonight.

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May your families find and keep health this winter season and always.

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 30: Stop It

Everyone has there own little list of things that irk them. Some call it their “Pet Peeve” list. James and I refer to ours as a “Stop It” list. Some items may surprise you!

” God only gives special kids to special parents.”

IMG_4705 What does this mean really? Who gets to define “special”?  Is the mother of a normal kid who is sitting in an uncomfortable hospital chair, half starved because she forgot to eat in her worry for her son who was admitted to the hospital for a high fever- not special? Is the father who comes home from work and immediately seeks out his normal children to play with before reading them stories and staying up late to plan a fabulous family weekend – not special? We are not special.We are parents. Now that being said, I do think we are pretty awesome parents but no different than any other good parent.

They are such a pleasure.” “Those people are always a joy. “Your daughter is so cute, I just love them.”

Who exactly are they? Is this the same they as in “They are always watching you?” or maybe “They are gonna get you?” If anyone were to speak this way about a race of people, they would be considered racist. Our daughter is an individual, not a they. Unfortunately, such sweet compliments drown in very poor phrasing.

“Down syndrome is the greatest thing that ever happened to me.”

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 I have heard some parents express this sentiment. And while at first I was taken aback, I do believe I know what they are trying to say. My life has changed dramatically since becoming a mother, but becoming Lily’s mother has brought me opportunities that otherwise would not have existed. Opportunities of friendship, creativity, advocacy and confrontation. No, I do not believe that Down Syndrome is the greatest thing that has ever happened to me and truth be told I would take it away or “cure” Lily from it in a heartbeat if I could. I do believe that having my children and my husband are the greatest things that have ever happened to me.

“She will do things in her own time.”

This statement gets thrown around quite a bit when people don’t know what to say or don’t feel like they can help. Although I understand that and yes it is always good to be given perspective, that is not at all what I need to hear. Of course all people will do things in their own time, however sometimes they need a little help. Sometimes the parent who is feeling guilty or inadequate because their child is delayed, needs a little help. This statement actually makes me feel even worse for worrying about it. What would be so much better here would be a statement of reassurance that I’m doing a good job and compassion for my feelings.

“I have to go deal with my children.”

We hear it all the time, “Sorry I have to go deal with my child.” or “How do I handle my child?” Excuse me? Take a quick moment and reflect on what you are saying. Children aren’t things that need ‘handling’ or to be ‘dealt with’. This is so disrespectful and degrading to our children. They are not property or a chore on a list, they are little human beings who are much more deserving than something one must ‘deal with’. We realize that many people don’t think about what they say, but perhaps they should. I imagine most adults would be mortified if they knew people thought of them as something they must ‘deal with.’

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“Staring at my children.”

We see you staring at our daughter, trying to figure out whats wrong with her. We see you staring at our son trying to figure out if there is anything wrong with him. Finally we see you staring at us. Sometimes you look at us with pity, sometimes with admiration and sometimes with embarassment. To you we simply say, Stop It! Our joyful presence should announce to you that we are approachable. Come say hello or move along please,

“How old is she?” “Oh”

Yeah… our daughter is smaller than yours. Our daughter is not abe to do all the things your child of the same age can do. We are fully aware of the difference between our children and are not entering a competition with you so please do not respond with such a sorrow filled exclamation. Do we look sorrowful? No.

“It’s okay, my child didn’t (walk/talk/dance/sing/snore/whatever else) until they were much older too.”

First problem: Maybe it is just us but this sounds like pity. Pity used to be a wonderful expression of sympathy but in todays world it has taken on a whole different tone. Being pitied evokes immediate irritation and sometimes anger. For us, we just don’t get it. Why pity us? We are one of the more blessed familes we know. Second problem: It is NOT the same. I am sorry but it’s not and it’s okay that it’s not the same. We don’t have to walk the same path to show one another empathy. Please stop comparing your typical child to mine.

“You can’t make them do it.”

What does this comment want from us? We are intelligent enough to understand that you cannot make someone do something they either do not want or cannot do. Was this even up for debate? Are you telling us this because you feared we had forgotten this concept? You are right, you can’t make them do it. But you can help motivate them, influence them, give them the confidence they need and so on and so on.. If you truly are wanting to help, then a different, more thoughtful response would be greatly appreciated.

So there you all go, our Stop It list!  This was an interesting write – I hope this post finds you in good humor. If it doesn’t then may we suggest you just Stop It! Lol 🙂

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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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