Thursday, January 31, 2013

Visiting Preschool

Today Addison and I visited preschool. I realize that I'm making a big deal out of a little transition since 1. It's preschool, not kindergarten 2. Addison will only be attending preschool part-time (two mornings a week)

But for us, this is taking the place of all of the therapies that we have been getting at home the past three years, so it is kind of a big change to our schedule. All that to say, today we did a visit and next Thursday is Addison's first official day. We both stayed for two hours and after about ten seconds in, Addison completely ignored me; so I sat in a teeny tiny chair, made myself invisible, and watched her blossom in this new environment.

I think that preschools are set up a lot like that witch's castle in the woods built out of candy. Addison walked into a beautiful, colorful room and immediately was distracted by twenty different awesome toys that she wanted to play with and other children who looked like they were having a blast, so she ran in full surrender, ready to do whatever it took to be a part of the fun.

All the ugly necessities such as "rules" and "therapies" and "must stay even when you don't feel like it" weren't discussed at all as Addison saw was the glitz and glamour of PLAY.

Her aide, Mrs. T got quite the workout chasing Addison from station to station as Addison wanted to play with everything at once. When the special ed teacher wanted to take Addison and I on a walk around the school to meet the school nurse and see the bathroom where Addison's diaper changing station would be set up, Addison did NOT want to leave her new classroom. "No, no, no" she said quite clearly (the only words she spoke the whole time we were there). Two pigtails bobbed and her whole body stiffened and then collapsed on the floor as if she suddenly couldn't walk. Classic Addison.

I was worried about her going to preschool, worried about what her other classmates might be like, worried about how she would learn in a classroom instead of one-on-one. But after today's visit, I am feeling really good about it all. Especially when about an hour in she noticed me and gave me a look like "what are YOU still doing here?" as she scurried off to master the water table.

I could see the grown-up big girl in her come out that tends to be hidden at home, and I was overwhelmingly proud of her. Someone asked me if I cried. Nope. But that answer might be different if you ask me again next Thursday when the drop off is for real.
 I was glad I took a snack for her today. I almost didn't because I wasn't sure we would stay that long, but Addison wasn't ready to leave. She sat down at the table with her new friends like she had been born for this.
 Of course she missed a certain little Mr. Carter, but he had a good morning at Grandma and Papa's house. Their laughter and "talk" while catching up on each other's mornings did this momma's heart good.
Here's to preschool and to little girls who are ready for the change into big girl territory.

Wednesday, January 30, 2013

12 Reasons Why I am Super Boring

Yesterday it occurred to me just how shockingly boring my life is right now. I sat down at my computer to write, and as I pondered Facebook's life altering question "How ARE you?", my mind became a giant blank sheet of ice much like the ice lining the streets outside preventing me from running outside these days.

So how AM I, Facebook? Blah blah blah blah blah blah blah. (Feel free to read that with some sort of exotic accent).

Anyone else ever have days like that?

Lest you fear this is a confession that will leave me cowering in shame, I'm owning my boringness with pride and acceptance. I'm boring- so what? My life would make the kind of reality TV show that would advertised as a "True Snooze Fest" or "Better than a Sleeping Pill". No one's knocking down my doors with a camera anyway, so I think I'm OK. In my experience, super exciting drama is not always a good thing.

But instead of whining about how Kate Middleton gets all the fun in life, I'm making a list of exactly WHY I am perhaps the most boring person in the world to help break me through these winter writing block blahs. You're free to read this list or perhaps take a short snooze. Both might have the same effect.

Note: I'm not saying I'm BORED. Just BORING. There's a difference.


12 Reasons Why I'm Super Boring:
1. I advertise our weekly trip to the grocery store to Addison and Carter as a "BIG, exciting ADVENTURE!" with wide eyes and enough enthusiasm to convince them I'm serious. And let's face it, I'm just not that good of an actress.
2. I DON'T sing and dance while I fold laundry. Mostly my laundry folding includes discrete cursing and whispered promises to myself to "not let it get this bad next time" while I try to rescue pieces that are being carried off by tiny blonde people who needed that soft touch in their hoarded random item nest who knows where.

3. I don't have any big raises in my career coming up. Unless you count Carter's recent activities promoting me from "Janitor of the Vomit" to "Queen of the Vomit". After something happens enough times, you gotta spice up the title a bit (but not TOO spicy...right, Carter?)

4. My daily fashion includes mostly flannel pants and big sweatshirts. If a therapist isn't coming over (which happens less and less these days), I wear my pajamas until the kids finally go down for their naps and I get a chance to get dressed (into a cleaner version of the same thing). Well excuse me for thinking that tending to their constant needs is a little more important than squeezing into an outfit that will end up covered in tiny handprints of applesauce and Greek yogurt anyway.

5. My social life peaks out at witty texts, bi-monthly playdates, and daily interpreting of constant toddler gibberish. I know, I really should CALM DOWN.

Toddler gibberish goes something like this (in case you were wondering):
"aslkjfbasliegfewaibgkj"
"Wow that is so interesting!"
"aslkjfblaiugbwaleigub"
"Tell me more!"
"alkjbfawelibweiubgf"
"Well of course I will give you extra vegetables!!!!!"

6. I'm not planning any exciting vacations. Unless...wait- we went to TWO grocery stores this week. That should count as something, right? Pretty exciting stuff right there. I took the kids for extra shots first to make sure their immune systems could handle the strange, new environment.

7. I see you reading this list and feeling sorry for me and my lack of planned fabulousness, and I DON'T EVEN CARE. I love my life.

8. Yesterday my big accomplishment was cleaning the microwave. Well, I did a ton of other stuff too, but that's the only thing that stood the test of time of 24 hours around here. A clean microwave. THAT'S what earns me the title "an accomplished woman". I'm just so proud. The other day I finally finished my Pinterest-inspired jewelry organizer, and I have yet to come down from the high.
9. As my hands comfort little ones who have fallen, change the millionth diaper, convince tiny mouths that they DO want to try this delicious mango, pick up toys, teach valuable life lessons "AND THAT IS WHY YOU DON'T TOUCH MOMMY'S COFFEE", assist the children in the bath who are convinced that they can do it themselves now, sing/read/dance with two toddlers who have way better moves than I do- my mind is overrun by words. Big words, little words, fat words, skinny words, snarky words, sweet words, confusing words, hilarious words, serious words. I tangle these words into creations that entirely over-dramatize the most boring life in the world (mine). And if for some reason I can't spend any time writing, I feel incomplete. Something big is missing. Writing is my crack. (Pretty sure this upgrades my "boring" to "Boring".)

10. My favorite time of the day is when two wiggling bodes are finally still in their beds overtaken by the goddess of sleep. I can then finish disaster clean-up in peace and collapse on the couch to watch what I want to watch. I dearly love that they're learning so much from Signing Time, but there's only so much of the "There's singing time and dancing time and laughing time and playing time but now it is our favorite time Siiiiigning Time" a lady can take before complete craziness takes over.

11. I write blog posts about being boring.

12. I'm too boring to come up with a twelfth reason. I know, you were really holding your breath over that one. Sorry to disappoint.

So to sum up, if an outsider would examine my life and my daily routines, I come out grade A BORING. But aside from slight winter blahs (that this post definitely is helping lift- I told you words were my crack), I'm totally OK with it because since my pace of life has slowed down so much, I don't miss anything in the life of two mischievous, hysterical, amazing, loving, disobedient, cute little children who call me Mommy (mostly just when they want something).

I have a feeling this pace is about to change dramatically as Addison enters preschool next week and my week will include DRIVING TO PRESCHOOL in the routine (twice a week) which let's face it is SUPER EXCITING and potentially DANGEROUS to drive that mile every day. (maybe reason 12 should have something to do with overdosing on sarcasm?)

Anyhoo, thank you for indulging me in my need to crack through my winter writer's block. If you're in a fabulous sunny location drinking smoothies on the beach with a personal massage therapist standing by, by all means share that information with me. After hating you for ten seconds (Ok thirty...minutes), I will then live vicariously through you and look forward to the day that that can be my life at the end of January too. (A girl can dream)

Meanwhile? I embrace boring and make it my own brand of fabulous. Because that's what boring people do.

Monday, January 28, 2013

The Many Faces of Addison

Three years ago January 28th I was on bed rest feeling sorry for myself. I had no idea the awesomeness that was about to enter our lives in the form of little miss Addison. I've just been really overwhelmed lately with how much I love her (and Carter of course too) not in spite of or because she has Down syndrome but because she is.

I had a different post planned for today, but I had so many pictures from the weekend I put them in video form instead. And then I threw in a few older pictures for good measure and realized that this would be today's post because these pictures perfectly capture the emotions that I just can't find the words for today.

I hope you have a very happy Monday.

Pictures are not chosen for professional quality, but rather what expression is captured on Addison's face. If the video doesn't work for you here, you can click YouTube and watch it over there.
It's really too bad she has absolutely no personality, huh? (-;

Countdown to birthday: One week, two days

Friday, January 25, 2013

The Milestone Competition

When Addison was a baby, I was obsessed with milestones and when they would occur. In fact, that was one of the things that truly devastated me during the prenatal diagnosis- the thought that she wouldn't "win" the unspoken mommy milestone race.

And then after she was born, I was firmly convinced that even though she had Down syndrome, she was still going to advance WAY faster than all other babies with Down syndrome because she was MY baby. (shake head at past version of myself)

When I would step onto carefully constructed soap boxes preaching this very thing but with a veil of pretend humility to Addison's therapists, they always got really quiet. They would remind me that she was struggling with a lot of health issues, and it was natural for her not to hit milestones for a while as her body fought just to get healthy.

For her first year, I let myself live in this mindset that I could somehow force my competitive spirit onto Addison, making her achieve faster because she was my daughter and surely she wouldn't let a little thing like Down syndrome slow her down. We would be the exception.

When Addison turned one, I started to really struggle. Addison wasn't walking. She wasn't even close to walking. I had walked as a baby at nine months, and I assumed that it was generous to tack on three more months to account for Down syndrome. But Addison didn't even care and continued along her merry way- sitting, somewhat crawling, or demanding to be carried. When I would try to push the skill on her and work with her, she would assume a limp rag doll posture. She was a master at the limp rag doll.

As that year progressed, she missed more milestones. A lot of them. In fact when we brought her baby brother home from the hospital when she was nineteen months old, not only was she still not walking, but she wasn't feeding herself/anywhere close to potty training/saying ANY words or signing much at all/or able to follow even the simplest of commands. It was like I had two newborns.

As I struggled to care for my two newborns and wiped away tears as her little brother smacked each milestone right on time like he owned the world, I finally let go. I was so busy loving my babies and meeting them right where they were at that I didn't have time to look ahead.

I let go of the competition. I let go of keeping track of "who did it first". I let go of those people who tried to passive aggressively make me feel bad by comparing my children's accomplishments to their own.

Because I realized that it didn't matter.

Carter is a master at milestones. Addison works for months and months before she attempts the same things. I love them both and when they do or don't accomplish big milestones hasn't affected that one bit.

Addison finally became a full time walker at 27 months. What did she take her first steps for? An unwrapped Hershey's kiss held just out of reach. I finally figured out that SHE had to be extremely motivated by something before she would give it the extreme effort that it took for her. Totally changed my approach to how I parent her.
It's not about me and my goals. It's not about any ideals I might have held about my children defining my success or failure. It's not about a frickin' number.

"Well, you meet every single job requirement for this your dream job, but there is one final question that we must ask you- HOW OLD WERE YOU WHEN YOU WALKED?"

Once the milestone passes and becomes a part of everyday life, we then start looking to the next milestone and pushing for that to happen faster. The faster we try to make this happen, the faster our babies turn into toddlers and our toddlers turn into tiny people who are ready for leave to that alien planet called "school". There's no end to this treadmill race. And while we run? Our lives pass us by.

My post the other day stirred some discussion in the Down syndrome community. Good discussion that accurately represents our differences in reality when it comes to Down syndrome. But it all reminded me of how competitive I was with Addison when she was a baby.

And for the first time in a long time, I really thought about the fact that there are other three year olds with Down syndrome who are way ahead of Addison. My "she's going to do amazing ANYWAY because she's MINE" somehow faded into "she's going to do her best and I'm going to support her every step of the way".

Addison isn't the most advanced three year old in the world? Addison isn't the most advanced three year old with Down syndrome in the world? I don't care. She is mine and we grow and learn together each step of the way even when each step takes far longer than I originally thought it would. Somehow in that extra waiting time, we get to know each other better and my unquestionably thin wall of patience grows just that much thicker. It's our journey as mother/child and no one can take that unique experience away from us.

I have stopped caring about milestone competition. It is just so not worth my time and energy. And I'm happy to have grown to this point. We'll consider it my own motherhood milestone. And what do you know...it took me forever to get here.

Wednesday, January 23, 2013

Baby, It's Cold....Everywhere

What do you do when this is your reality? 
(and by "you" I totally mean us...aren't you just so jealous?) (-:
 You take lots of self-portraits on your phone with two little children who are obsessed with staring at themselves in the phone's camera.
 (especially this one)
 You built block towers so high and strong that even little brother can't tear them apart (and when he does, you built it back again...no matter how long it takes)
 You experiment with new places to climb and express frustration when you get stuck.
You make the ooiest, gooiest chocolate chip cookies possible (also: you make up words)
 with the proper assistance, of course (on the cookies, not the words).
 It takes a pretty selfless child to sacrificially dirty their hands in cookie dough while bravely climbing up so near to the forbidden counter. 
Someone's gotta do the dirty work...
 ...which includes sneaking a taste to make sure it didn't "go bad" before the family eats it. What a way to sacrifice yourself for the cause!
And last but not least, after you get a nice sugar high from your afternoon cookie snack, you lose yourself in a good book. 

We're thinking warm thoughts over here today.

p.s. Thank you so much for your overwhelmingly positive response to my last post. I am working on replying back to each of you who took the time to reply to me. Thank you so much for your kind words of encouragement.

Monday, January 21, 2013

Down syndrome- a promise of happiness or a curse?

I've been on this Down syndrome path for three and a half years now (including the prenatal diagnosis), and it's interesting to me to see the two ditches that people often fall into when describing Down syndrome.

Ditch #1
1. It's a condition. It's a curse. It's a defect/mistake. It's horrible. It will ruin your life.

Ditch#2
2. Down syndrome is completely amazing! It totally rocks! It will blow your mind with awesomeness! It's like dipping a unicorn in sprinkles and tying it up in a rainbow!

I call them ditches because in my experience as a mother to a child with Down syndrome, neither of these is our reality with Down syndrome. Is it a curse? NO. Is it all smiley faces and glitter? equally NO.

Oftentimes I see parents combatting the very offensive Ditch #1 with Ditch #2, making life with Down syndrome seem over-the-top incredible; placing a beautiful quilted rug over the scratches on the floor, dimming the lights, lighting candles so that the harsh light of reality can be softened by edited pictures and carefully crafted sentences.

It's as if we're all afraid that if we admit that it's anything less than perfection every second of every day, everyone will assume that we don't love our children or somehow regret their existence.

Looking back over my past three years of blogging, I'm pretty sure I can be accused of falling into Ditch #2 on more than one occasion. It was part of my journey. I started in Ditch #1, swung too far to Ditch #2, and slowly over time crawled my way out with a more objective view of this Down syndrome thing.

I'm not here to accuse anyone of misrepresentation or call out blogs that I feel are mostly hype, but I am here to share with you what I have learned. I can't speak for anyone else, but I live this reality every single day and I wanted to share a few thoughts.

1. Down syndrome is.
It's not a poison that's working to ruin lives or something that's projecting fairy dust all around- it just is. It occurs in all kinds of families who all respond to the diagnosis differently, live with the diagnosis differently, look forward to the future after the diagnosis differently. No two individuals with Down syndrome are alike just like the families they are a part of are all different. To place broad stereotypes- either saying it brings sadness OR happiness to a family- would be to stereotype hundreds of thousands of families and downplay how they choose to live their unique lives.
2. Down syndrome brings with it delays and health concerns. 
I feel like I share pretty realistically on this blog about our day-to-day with Addison, but just in case you have missed those posts, let me say that Down syndrome is not always easy. Addison had very serious health concerns for her first year of life. She was in the NICU for five weeks (born full term), was on oxygen for 9 months, was g-tube fed for five months, had two heart surgeries in six months, and has been checked every few months for leukemia because she was born with a transient version of it. For the past three years, we have seen four therapists almost every week to help Addison advance to her next milestones. (This has been a lot of work.)

It's frustrating that she can't talk to us. It stretches my patience to have to wait for her to do things/learn things because I want to do everything quickly, and she does everything at a much slower pace. I struggle with the fact that she is three but yet isn't as helpful/communicative/independent/able as a typical three year old.

I don't care how rose-colored your glasses are, Addison's special needs have been very difficult to deal with at times with no promise of an easy future. Low muscle tone isn't going away. Speech difficulties will just become more apparent as she merges further into life. Developmental delays don't have a "catch up" date.

To cover this with a pretty picture of constant happiness and cute puppy snuggles is not an accurate portrayal of Down syndrome.
3. Down syndrome does not take away from the fact that Addison is a little girl.
When she was a baby with her many health concerns, it was hard to see past her diagnosis. It was hard to imagine her living past lying in the NICU isolate attached to a million wires, so puffy that you couldn't make out her features. And yet as she has grown past all of that, she has shown us a hilariously fun personality of a little girl who is obsessed with chocolate, books, pretty things, dogs, Signing Time, and her Papa. She is fiercely independent and has blossomed from the sick-looking rose bud from her early days into a gloriously beautiful red rose.
4. Down syndrome has taught (is teaching) me many life lessons.
Compassion for those who are different from myself; patience; understanding; appreciation for different learning styles; loving not because it benefits me, but because in spite of this unexpected version of motherhood, love has bonded us; enjoyment for little milestones becoming a big deal because of how hard everyone worked to get there; thankfulness for life; happiness in the face of difficulties; confidence in my family's ability to overcome hardship; peace with today; contentment in the giving of myself to nurture another life.
5. Down syndrome does not define Addison, yet it is a big part of who she is.
Oftentimes parents might choose to describe their children with Down syndrome by the physical features that set them apart. "Adorable squinty eyes" "Kissable flat nose""Love the feel of lifting the body with low muscle tone out of the crib in the morning".  By doing this, I don't think that they're highlighting the differences and exalting them to make them seem cool. I think that those physical characteristics are so closely intertwined to who that child is that after a while as a parent you don't see a difference. Addison is Addison. Her physical characteristics include very distinct markers of Down syndrome, yet she could easily pass for a twin of her brother Carter. I've stopped thinking of her features as different and just part of who she is. If I mention them specifically, it's just my way of describing my beautiful daughter.
6. Individuals with down syndrome are more alike than different. But they're also going to have different struggles, different points of triumphs, different paths of achievement. Can both be true?
Over the past six months, Addison took a gymnastics class with her peers. Yes, she was more alike those other children than different (a little girl wanting to have fun!), and yet she needed so much more help to learn proper behavior than any of those other children did. We had therapists meet us at class to figure out the best ways to help Addison do well. I wrote long blog posts of frustrations when it didn't go well, happy posts when she achieved small goals. To put a "She's more alike than different" bandaid over the experience would completely ignore the the extra assistance that she needed to meet her other peers where they were at. I want the world to recognize that she is a beautiful three year old enjoying life, but it's also completely unfair to Addison to not acknowledge all of the extra work that she has to put in to do this.
7. Down syndrome Addison brightens my life every day and makes me happier than I ever thought possible.
It's easy to assign blame or give credit to the genetic makeup of a person, but the truth is? Down syndrome isn't what brings joy to our home. Addison is. Down syndrome doesn't work hard to succeed in feeding herself, dressing herself, and preparing for preschool. Addison does. Down syndrome doesn't smile so brightly I think my heart might explode with love. Addison does. Down syndrome doesn't have a streak for trouble as she steals food from her brother, hides toys, tears her room apart, and refuses to let me brush her teeth. Addison does. 

Down syndrome doesn't make choices for Addison. Down syndrome doesn't pre-program a certain path for her. Down syndrome doesn't determine that Addison will be a certain way. Yes, Addison has the genetic makeup of Down syndrome which brings with it some delays and struggles, but like any other girl she takes what she's been given and LIVES according to how she wants to live. She makes choices. She chooses to laugh or cry. She decides whether to charm us or stubbornly stiff-arm us.

To give Down syndrome all the credit for what Addison has brought to our lives is completely overlooking everything she has brought to the table as an unique individual.
8. Down syndrome does not warrant a death sentence.
I'm not here to argue pro-choice or pro-life. I don't think that is the issue here. The issue that I'm addressing is when parents find out that their unborn child has Down syndrome, and they then choose to end the life because of the "defect" even though they badly want a baby.

Medical professionals will feed new parents a line. Society will feed new parents a line. Friends and family who only know "normal" will feed new parents a line. Preconceived notions from past glimpses of differences will feed new parents a line.

It's easy to listen. It's easy to think that "they would be better off" to not live. In addition, you can read my reality of the health concerns, delays, frustrations, and uncertain future and feel justified. "SEE!" You can reason with yourself. "She's been through it already and she said that it is HARD!"

But the truth is that PARENTHOOD is hard. LIFE is hard. Yes, I lay out all the cards because I don't think it helps anyone to feed sugar coated lies about easiness and "motherhood is one long cruise" because it isn't. To admit that things are difficult doesn't mean that I love my daughter any less. It just means that I am honest about our journey because I respect you too much to lie to you. If you are in the experience someday yourself and discover that the snuggly puppies bite, it helps to hear real stories of parents who have been there.

Sometimes the things that are the hardest for us to do-the most difficult circumstances to live through-the most frustrating lessons that never seem to end are the things that shape us into who we were meant to be. And those things bring with it true happiness and contentment that never would have come our way on the easy path. I'm not saying that Addison's life is the most difficult thing, I'm just saying that there have been moments along the way (health concerns etc) that fit that description.

As the mother of a child with Down syndrome- as the mother of a child with Down syndrome who has had significantly MORE health issues than a typical child with Down syndrome- as the mother of a child with Down syndrome who DIDN'T want a child with Down syndrome- I still say with confidence "WORTH IT".

Just because something isn't easy doesn't mean that it doesn't deserve our efforts. 

Addison is worth every bit of medical drama that we had to go through to keep her alive her first year. Addison is worth every minute of the long hours of therapy appointments. Addison is worth our love even though it had a bumpy start (surprise diagnosis anyone?). Addison is worth fighting against social stigmas to help her live to her fullest potential. Addison is worth our time and effort into caring for her as a baby long past the time her age says that she should be acting like a baby. Addison is worth life.

I believe that Addison was perfectly created by a sovereign God. I believe that he then placed her in our family. I believe that he has an amazing future ahead for Addison. And I am beyond thankful for her. She is my daughter. She is NOT Down syndrome. She is a little girl who has Down syndrome, living life to the fullest every day.
9. Down syndrome does not mean "stupid".
I've mentioned this before, but one of the physical characteristics of Down syndrome includes a small mouth which then makes the tongue seem oversized. This then lends to difficulty with speech. First of all, it's more difficult to learn to talk and then when conversation is possible, speech might be slurred or difficult to understand. Because communication is difficult in this way, oftentimes it's hard for individuals with Down syndrome to express what they're really thinking. This is often misinterpreted as not understanding or comprehending.

Addison struggles to talk. She signs mostly to us. Her spoken vocabulary is under twenty words at three years old. This makes it very difficult to know what she understands and such.

But what I have learned so far is that Addison is freaking smart. She manipulates situations when she wants something. She devises schemes to turn things her way. She problem solves like no one's business. And she does this all with very little talking.

It might be easy for someone to make a rushed judgement when meeting Addison for the first time. But as someone who knows this little girl very well, I know better than to let her pull a fast one on me....again.

10.  If viewed realistically, Down syndrome should be overshadowed by a life. 
It's just a label. It's not a life sentence. It's not a promise of happiness. It's not a promise of a certain outcome. It is a life.
As Addison continues to grow and go through new phases of life, I know that I will grow and change right along side her. I'm not saying that I'm an expert. I'm not saying that I've "seen it all" because I haven't. I'm just getting started parenting a child with Down syndrome, and I still have so much to learn. I'm sure if you asked a different family in the Down syndrome world to make this same list perhaps it would look far different than mine because we're all at different points in this journey where certain issues seem like a bigger deal to us than they would at other points.

But there's one lesson I learned early on that I plan to hold onto tightly through all the mountains and valleys still ahead of us.  I love my daughter for exactly who she is. I go back and forth between wanting to be a part of the Down syndrome community and wanting to just focus on my family and our normal. I don't claim to be a "big Down syndrome blogger" because I'm just a regular ol' mommy blogger posting snarky pictures and the day's happenings. But every once in a while I read something that someone else has written that reminds me that if I don't share at least one version of this reality, people will stay in Ditch #1 because Ditch #2 seems like a lie special needs parents feed themselves to keep the world from feeling sorry for them.

Here's to turning up the lights and seeing the whole picture. Here's to celebrating differences, enjoying life, and shaking off the glitter to take in the raw beauty of the truth underneath. 





Wednesday, January 16, 2013

Carter Sets The Story Straight

Hello everyone. Carter here. Remember me? Some people just know me as "Addison's brother". But today I'm a guest poster here on EANFE, so I'd prefer it if you used my whole name- Carter TROUBLE Henry Smith. 
Just so you know, I am no longer a baby. I am a big boy now.

I enjoyed being a baby so much that I didn't think that this "big boy" thing would be all that fun until I discovered all of the amazing things kept up out of my reach that I can now climb and claim as my own. Why would they keep this from me? 
It's like they don't even love me.
I'm like Columbus discovering the new world full of taboo computers and sharped-edged objects. FACEBOOK? Well hello! It even asks me how I'm doing!!!
 This morning I was doing my usual- climb all over mom, take over her computer, eat her breakfast, cry when she wouldn't give me any of that "coffee" stuff- when I heard her shriek "I forgot that a therapist is coming in FIVE minutes!"

I thought that was hysterical. Five minutes? I love a good a good frantic-mom-cleaning-dance as much as the next guy. I take that time to perfect maneuvering circles around her and clinging to her like we've been separated for weeks. It's really quite fun.

Unexpectedly, something went horribly wrong with that plan. 
The maid service must have been short-staffed this morning. What is this world coming too??? 
Mom said something about having it coming to me because of "the stunt" that I pulled in the grocery store yesterday? For the record, I have no idea what she's talking about. (pause to lick lips)
 So anyway, just after the therapists arrived, I noticed that mom took a few shortcuts in her cleaning this morning.
 For example: I'm PRETTY SURE that laundry does NOT belong in my Tonka tent. WHY would she think that this is OK?
Being the concerned citizen that I am, I took care to dismantle said tent until everyone else could see the sham that she was pulling. Man, you should have seen the look on my mom's face when her laziness was exposed to the world. Classic!

But then for some odd reason, my nap time seemed to occur earlier than usual, and I missed part of the fun therapy session! I used my brilliant "fake cry" routine to show my disbelief at being treated so unfairly. 
The need for this routine began a few weeks ago after my beautiful artwork on the Dining Room chairs was covered by some weird material that DOESN'T SHOW any of my talented work with food-covered hands. 

That was hurtful. How could you?
 Anyhoo, the routine didn't seem to work this morning as I still got hustled into my crib with little to no ceremony while Addison got to stay in the living room and play with the super fun therapists.

Life is so unfair. 
Anyway, (yawn) if you'll excuse me (yawn) I hear a bobble calling my name and I NEVER say no to a good bobble of milk (yawn).

Until later,
-Carter


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Monday, January 14, 2013

Does she understand?

I have a confession to make. When I posted last week about Addison's toddler bed transition, the biggest question in my mind was not how to teach discipline to my child, but rather does she understand?

Does she understand that she has to stay in her bed? Does she understand why? Does she understand that I still love her even when I lecture her and put her back in her bed for the zillionth time? Should I just not bother trying to teach her because she might not understand? Does she understand why I'm not as happy to see her out of bed as she is happy to see me? Does she understand the concept of "stay" when nothing physically is holding her back? Can she mentally comprehend the choice and then choose to obey?

I know in past crusades I have shouted to the world to NOT UNDERESTIMATE my daughter just because she has Down syndrome and yet I confess: I find myself doing this very thing.

Addison is very beautiful with doll-like features (in my humble opinion), but there's something about the way that she stares at you that doesn't always make it seem like she understands what you're saying. She tucks away knowledge in her brain and then pretends it's not there which makes me wonder more often than not if she just "doesn't understand".

There are then moments that she shows her brilliance, in ways that I perhaps wasn't looking for it, and then I always feel embarrassed that I assumed something about her that wasn't even close to being correct.

For example: her toddler bed. On that first day when she just tore apart her room, I desperately sought for answers to help make her just not do it instead of figuring out a way for her to CHOOSE not to do it. Because I just wasn't sure if she could understand that decision. (hang head sheepishly)

And yet as the word "NO" got such a workout here over the weekend (that word must be very fit), and Addison was put back in her bed time and time and time again (a zillion times), and I could see it in her eyes when the concept clicked (when she understood she cried when I left her in her bed- she was sad about not getting to play with her toys)...she proved to me that she DID understand.

Does she always make the right choice? No. Is the transition complete? Not quite. But last night she was a bit wound up still when bed time came around, and although she circled to every corner of her bed, she stayed IN HER BED before falling asleep on her pillow. (Although she did sneak out of bed to grab the radio off the floor to mess with the dials and change stations to better dancing tunes. But the fact that she got it QUICKLY and then got back in bed before I saw her shows comprehension as well because before she would be sitting on the floor with the radio when I came by and would just smile and laugh at me.)

When my tears of frustration thinking that she would always be a baby in this way turned to stubborn tears of a smart toddler being mad that she couldn't get her way- I could see how wrong I was in my initial fear. Of course she understands!

This morning when I went to get her up, she was standing by her (baby-gated) door and as soon as she saw me she said "No, no, no, no" while shaking her head and looking guilty. That's when I explained that of course she could be out of bed now because it was time to get up and start the day. That in itself was a huge step from her initial response of "Hey! Mom's stopping by for a social play visit!" smile that she gave me when I caught her out of bed the first hundred times. She gets it.

Anyway, all that to say, Addison has once again proven me wrong. (I think this is her life's motto). 

She DOES understand- far more than I often give her credit for. And other than that first night of hearing cries at all hours of the night and finding her huddled on the cold floor all around her room trying to figure out where she was (still asleep), the bed transition has been a success (knock on wood) because she is a big girl. A smart big girl who understands that she has to stay in her bed once play time is over. Have I mentioned lately how much I love my Addison?
(she wanted a snack so she found tortilla shells in the pantry, helped herself, and then held them tightly in her little fist so that her brother couldn't get any)

Friday, January 11, 2013

The Big Ski Trip

Yesterday was a day I'd been looking forward to all winter- taking the kids skiing. Since Aaron works up at the ski resort a few weeks each winter we get free rentals for the kids, making this a very affordable (read:free) activity for us.

I truly thought that Carter would do amazing. He loves to run and move fast no matter what the activity is. Addison I wasn't as sure about. Last year she did well, but this year she's pretty much cried every time her cheeks hit cold air.

But it was a family afternoon, and I was excited to see how the kids would do.

And this is the point where I can 1. Do the Blogger lie thing and make the pictures say what I want them to say and portray the afternoon like I envisioned it all in my head or 2. Tell the story how it actually happened...hmmmm tough choice.

Let's start at the beginning.
Addison was psyched to be out and about. She could sense our excitement and went with it.
 Carter warmed up to the excitement slowly.
 They both sat very still while they were measured for their boots (the SMALLEST boots the resort had)
 And two pairs of teeny tiny skis were all prepped and ready to go.
And just as I expected, it was a HUGE HIT! The minute Addison was strapped up into her boots and skis she couldn't have been happier! Oh wait...
Carter? Nope...guess these pictures aren't going to let me lie.
 Truth is, the minute we got to the bunny hill I had to go take a little break (ahem-curse the large McDonalds sweet tea for the ride up) so I asked Aaron if he would be OK for thirty seconds alone. He said of course he would be fine. (He blames what happened next on me abandoning them)
I came back to find both children in tears. Aaron said he didn't know what to do because they both just immediately broke down and entire bunny hill was staring at him and his two sobbing children. That's us. Just one big happy family.
 "Save me from this torture!!!!"
 So we rescued them from their "feet prisons" and held them for a while watching everyone else on the bunny hill. It was a super warm day for Vermont so it was quite enjoyable to stand and watch other skiers do their thing for a while. It was really the perfect weather for kids to try skiing for the first time.
Too bad they both inherited the "stubborn cantankerous" gene from...well, we won't say who.
 Because the ratio really needed to be two adults to one child (like we had last year with just Addison) instead of one to one, we had the brilliant idea to go back to the car, give them a snack break, and then try again in the parking lot with one child at a time while the other waited in the car.

That's when Carter Henry finally tolerated it enough to actually do some "baby step" skiing.
 Addison and I were cheering him on.
Ok scratch that. I was cheering him on while Addison tried to figure out how to get OUTTA there via driving the car herself.
 Hasn't anyone told you the dangers of drinking and driving Miss Addison?
 GO CARTER GO!
 This beautiful moment between father and son was promptly overtaken by
 this beautiful moment which included some Addison photo bombing. (seriously this picture makes me laugh every time I look at it): 
 Another snack break:
 And then it was Addison's turn. I couldn't tell if she was more upset to be away from the bag of pretzels, out of the driver's seat, or back into an activity she had decided ahead of time that she hated.
 Her turn didn't last very long...(better luck next time I guess)

Here's a brief clip of Carter's first skiing efforts (if you care). Please excuse my super loud annoying voice in the background. 
So yeah, fun afternoon out. Here's to mommy expectations having to adjust along the way and trips out never going quite as they were idealistically planned out in my mind ahead of time.

p.s. Addison slept all night in her toddler bed last night! Thank you for all of your suggestions. We're still working on the discipline aspect of it all, but I loved the practical suggestions that you all shared with me. Thank you!