Monday, October 28, 2013

Seeing Addison For Who She Is

Lately I've been thinking a lot about who Addison is.
Not who she is supposed to be, or who I want her to be, or who I sometimes pretend she is.

Who she really is.

Because she is so quiet and delayed with her speech, it's really easy for me to make her say what I want her to say. Like when she sends someone a Thank You note, I write the note on a blank sheet of white paper, I read it to her, and she paints over top. A Thank You note "from" Addison.

Sometimes I think perhaps I do that with her life.

When she was a baby, it was easy to post pictures with captions completely out of my head- forcing a subject or emotion on the picture that perhaps wasn't even there in the moment.

I thought I was understanding her. I thought I was in her head. I thought I was truly trying to get to know her, but in all reality- my perceptions always came first.

What has forced me to reevaluate this? Carter.

He is not quiet. He is not reserved. He is the hurricane to the light sprinkling of rain that Addison is. Extremely opinionated. Extremely verbal about those opinions. Extremely loud and stubborn.

He has forced me to rethink how I interact with my children. How I listen to their opinions. How I direct them where they need teaching and accept them where they need grace.

Those means two different things for Addison and Carter.

"She's rocking out Down syndrome!" What if she doesn't want to rock out anything? What if she just wants to be a quiet little girl who loves chocolate and dancing with her family?

"She may have Down syndrome...but look at what she can DO! Way to break all the stereotypes, little girl!" She doesn't care about the stereotypes. She wanted to climb to the top of that dresser so that she could be doing exactly what her brother was doing. She has no hidden agenda to PROVE A POINT ABOUT DOWN SYNDROME. She just wants to live equally as a part of our family.

When I look at her in her beautiful blue eyes, I learn a lot. She is getting better at answering "NO" or requests for "more" or "all done" or "please" but also is extremely expressive with her facial expressions and hand gestures.  She is communicating who she is in many different ways if I am patient enough to hear/see what she's saying. Sometimes I just need to stop my hurried pace, wait, and really listen to her.

Life gets so distracting. The laundry, the dishes, the little boy dunking his toy cars in the toilet, the dinner that needs to be made, keeping the little boy's toilet-water-covered hands away from half-prepared dinner.....sometimes my favorite days are when I take the time to set those all aside, sit down with Addison, and just wait for her to tell me what's going on with her. It's easy to ignore her. It's easy to let her wants and needs get pushed to the side because she won't insist on being heard (like Carter does.)

Not going to lie- it is easier to get a sense from Carter what's going on with him because he will use words. And tantrums. And mischievous sneaking around. But Addison's opinions are no less important. And awesome. And worth whatever effort it takes to extract them from her.

The other day I had a morning to spend alone with Addison. I don't get these mornings often because she is usually in school while I have one-on-one time with Carter. We ran errands, and she was very quiet and most uncooperative. She didn't want to walk and hold my hand (like Carter does), so I ended up breaking out the wagon just for her to sit in. The stores were small and hauling the wagon around seemed ridiculous. I started to get frustrated with her because her only response to anything I asked her to do was to whine and cry. Running these errands with her was turning out to be way more work than running errands with Carter. And I didn't have the energy to deal with that. And I certainly couldn't carry her from place to place or physically make her walk when she was determined to sit and pout.

I don't like comparing Addison and Carter. I hate it when my mind goes there because it's not fair to either of them.

We were rushing from store to store. I was going my pace and didn't even acknowledge that Addison wasn't keeping up with what was going on. Also, she wasn't wearing her glasses because it was cold out and I was just trying to get her to keep a hat on so she probably couldn't see the things that usually hold Carter's attention as we rush through errand time.

I had an agenda. She wasn't it. I was frustrated because she was whiney and refusing to walk. She was frustrated because I was refusing to see her. Instead of Mother/Daughter Time, it was Mother Time with daughter being dragged along.

It wasn't until the very end that we reconnected. I asked her if she was hungry and if she wanted to get some lunch. She immediately lit up and said "EAT. please. Eat. Please. More. Eat. Please."

It occurred to me that that was the first time that morning I truly explained to her what we were doing next and asked her opinion on it. Plus? Sister was hungry from being dragged all over town.

Forcing my spinning mind to slow down, we stopped the errand list and drove to McDonalds while I talked to her more about eating. I asked her what she wanted and what toy she thought she might get with her Happy Meal. She didn't answer, but I could tell she was listening.

When we got out at McDonalds, she walked very obediently beside me, holding my hand. She waited a few seconds while I ordered and then wandered off to a table. She picked a seat, climbed up, and waited there. "Eat. Please. More. Eat. Please." Was requested by her every time I went over to deposit food items onto our table that she had chosen.

She beamed with pride when her food was laid out carefully in front of her. She was fascinated with her page of stickers and the bucket her meal came in. We talked about everything and nothing and even though her responses back were not verbal, I could tell she was with me for the first time that morning.
I helped her with her drink, she stole some of my French fries to make sure they weren't better than hers, and she required ALL the napkins to wipe her face after each careful nibble from her cheeseburger.

It was a date. We sat there long past when I was done eating because she was still working on her food.   This was about seeing Addison for who she really is. A cute little girl who enjoyed that Happy Meal with more gusto and happiness than I had seen from her all morning.

We talked about how she was going to sleep at Papa and Grandma's house that night and how she needed to make sure that Carter obeyed and went to sleep. We talked about school and how I was sorry she had to miss last Friday. We talked about the new baby coming and how I was going to need her help as big sister. We talked about how proud I was of her. We talked about the new raincoat that I just bought her and how we need to find her some new boots for the coming snow.

Each subject matter was considered very seriously by her even though her responses were sparse. Her facial expressions responded even when her words could not.

I just wanted to freeze this lunch date into my memory. I wanted to always remember to see her for who she is. Not for who I need her to be. Or who I want her to be.

Who she is.

Because "who she is" is pretty awesome. And very sweet. And just wants to be talked like she understands- (because she DOES even though she can't always tell me that.) And has absolutely nothing to do with Down syndrome or "rocking" anything or proving herself to the world.

It's just about a little girl being a little girl. One proudly carried bucket of Happy Meal leftovers at a time.


p.s. Thank you to those who gave ideas for preggo/bearded husband costume ideas on my facebook page.  We ended up going as the Master of Ceremonies and the Disco Ball. I cannot take any credit- my Mother-in-Law heard the idea from someone at Joanne Fabrics and then she sewed together the sparkly ball material for me. All I did was find black apparel to wear underneath. Aaron borrowed a fun tux thing from his dad, and we were all set. Awesome costume party...and even more awesome that Addison and Carter successfully slept all night at the grandparent's house. Seriously- amazing to get that break! (And to know that when baby comes they won't completely fall apart in the new space. (-:) Thank you!




Tuesday, October 22, 2013

Mom Guilt vs. Big Picture

I was in the kitchen trying to wipe down counters. I could hear Carter coming my way. I had to hurry and finish cleaning before he got here. Once he arrived that would only mean one thing- pulling out of drawers, standing on them, climbing up onto the counter, undoing the wiping down, and tasting everything within reach. I could practically smell the toddler evil as it neared the one clean spot in the entire house with a will to destroy.

While scurrying to finish this task (the first successfully completed task all day...and it was 5pm), I heard a noise in the bathroom. The toilet lid. Addison was in the toilet. Of course. No doubt she was washing her hands (again) or fiddling with the toilet paper before she threw it all in the bathtub and turned the water on high (to properly soak through the entire roll, of course.)

I tucked my bowl of soapy water far our of reach of short toddler arms, placed the sponge in the sink, and went running to my new #1 priority- fishing Addison out of the toilet. I passed Carter mid-run and saw guilt on his face that made me wonder what else I should be worrying about.

I skidded as gracefully as possible into the bathroom (soooo not gracefully at all) and stopped short when I saw what was really going on. Addison had been in the big toilet- yes. But only to set up her potty seat. When she was unable to climb up onto it, she lifted the lid off of her little toilet and was frantically trying to strip off all her clothes. She was tugging at her diaper and had a look of panic on her face.

"Potty" she said "potty" and signed it too before tugging at her diaper again.

I quickly finished getting her clothes off for her, and she sat down on her potty with a sigh of relief. Almost immediately? She began to fill her little potty with the urgent need that brought her into the bathroom in the first place.

"Sing." she said "More sing" Her standard request while sitting on the potty.

I started singing her latest favorite "Do(e), a deer, a female deer..." and she laughed and clapped along.

I was happy because she was happy, but mostly? I felt guilty. In that moment it became obvious to me that if Addison had a less pregnant mommy- she would probably be so much closer to fully potty trained already. If she didn't have a mommy exhausted and short tempered from dealing with a little boy in the throes of the terrible twos, perhaps her potty training would have been given more than a brief thought for the past two months. If she didn't have a mommy whose sanity had long gone they way of jeans with zippers and fully caffeinated coffee- maybe she would be so much farther along in certain areas- like getting rid of diapers.

Mommy guilt. It hit me hard. It's my fault she doesn't have more successes like this.

Her smile was broad, and her infectious laugh filled the air. She sat, naked on her tiny potty in which SHE initiated a successful potty time. SHE did her business like a big girl. SHE requested her next song "Row, row, row" complete with a dramatic rowing motion.

I asked her if she was all done and she said "NO!" and requested another song- even though it was obvious her business was finished.

Right before I let the mommy guilt carry me away, my mind jumped to a moment just a few hours ago. Both kids were dressed (success!), mommy was wearing clothes that covered all of her (success!), and we were all loaded up in the car to go stock up on Costco necessities like coffee, dishwasher soap, apple cider, and milk.

I was quiet while driving. I needed some space from the two in the backseat. The classical station was sweetly playing tunes for the brain development of the three littlest members of the family. Traffic was slow. The sun was finally shining for the first time all day.

While my mind was stuck in a rut of frustration from the day, I heard a little giggle. I peeked back in my mirror and saw two faces leaning up agains the back of their carseats, facing each other, and giggling with pure joy.

We stopped at a red light, and I got a closer look. They looked at each other so adoringly. Carter made a funny noise, and Addison laughed. She made a silly face and he laughed. They looked so happy- so thrilled with each other. Smiles. Giggles. Hysteria. Reaching out to grab the small hand a carseat's width away- this is the family that we are building.

I remembered that moment while singing to Addison on her potty. And in the height of my guilt over the potty training, I let that moment of sibling unity win over the mom guilt. It was no contest really.

I am trudging through these end of the pregnancy days feeling shredded, overwhelmed, vulnerable, frustrated, exhausted. I find breaths of air here (MIL folding my laundry!) and there (church Preschool mom's breakfast!) and pray for grace during the rest of the moments.

I am doing this so imperfectly. I am failing my children in so many areas. And yet- big picture- I am building something bigger than my failures. A family. A family who I will one day bring up their toddler evil right when they're on a first date with that cute girl who NEEDS to know how he smeared that diaper all over himself (ha).

I watch my children interact like two halves of a whole, and smile with joy (even when they are plotting against me) because someone much bigger than me is creating that beautiful relationship.

I am learning the art of apologizing to my children for my impatience. I am learning that I can't do it all, and sometimes it's OK to not have a clean house because that time is better spent teaching a little person to pick up that ONE object instead of me just doing it all myself. I am learning that Addison is resilient like the best of them and will survive this period of less attention just like thousands of little girls before her who were preparing for a new baby brother. I am learning that my best isn't perfection. But my best is good enough. Because family doesn't demand perfection.

I clapped and cheered with Addison over her potty success, and then I beamed with pride that she didn't even demand chocolate as a reward. She did it- simply because she knew it was the right thing to do. I made a mental note to give her more opportunities, but knew that she didn't hold the lack of potty training pressure against me.

After she was all dressed and ready for bed, I spent extra time cuddling her. Her head fit right on the baby (who she kept kissing), her arm wrapped neatly around me, her hair fell soft under my fingers as I played with it. We looked through Instagram together- identifying the people and objects that she knew. And really- just being together. Mother and daughter. No guilt. No frustrations. No impatience. Just deep breathes and back tickles. Perfection.

Tuesday, October 15, 2013

Meeting my baby for the first time

As I trudge through my days, wondering if my body will make it another hour without falling apart- as I try to pick up my house with as little bending over as possible- as I lay awake at night unable to fall back asleep- as I rest on the couch feeling the aggressive kicks and punches of an active little boy- as I chase/waddle after my tots wondering when they started to run so fast- my mind always jumps ahead to one moment.

The moment when I get to meet my new baby. The moment when the person that I have worked so hard to grow is no longer just a blurry image on an ultrasound mugshot. The moment when beautiful newborn lips are smacking to eat, plump cheeks are begging for kisses, little feet and legs are bent just so to snuggle up against me, the tiniest of fingers reach to grab onto mine. The moment when the heart beat that we've been tracking for the past 9/10 months is now on the outside, pressed against me, beating in unison with my own. The moment when the unfairness of pregnancy's sacrifices all becomes very, very worth it.

Delight in the newborn smells, surprise by how tiny this body seems in comparison to the toddlers I have back home, relief that the labor/pregnancy part is behind me, satisfaction that the empty crib warmer that has been taunting me for the past hours is now filled with a new occupant, joy in the new life ready to call me Mama, happiness that this beautiful bundle is mine, suspended between the moments of difficult labor and newborn sleeplessness, love so intense my heart threatens to explode- this moment of gold is one that I will relive over and over again for each of my children.

This moment signifies an end. A beginning. An event all of its own.

This moment is full of exhaustion, pain, disbelief, shock, wonder, happiness, joy, excitement. These conflicting emotions swirl together into one tiny bundle that rests so gently in my arms for the first time.

The responsibility of new motherhood blended with relief of the moment finally arriving- this moment holds no guarantees. It might bring with it a surprise. It might be stolen from me as an unhealthy baby is whisked away to the NICU. That's what happened with Addison's birth. Our moment was cut short. Way too short.

The moment might be proceeded by a scary, questionable moment. Like with Carter Henry who was born all wrapped up in his cord- a 7lb 11oz blueberry.

In this moment the waiting is over. The wondering is oftentimes ended. There isn't an autobiography that is pushed out with the placenta- telling you exactly what this new life will hold, but now you can look into the eyes of this tiny person. You can connect in a new way. Nurturing, teaching, loving- these things take on new shape. The shape of a newborn.

I have been thinking a lot about this moment. I can barely believe that in 6ish weeks I am blessed to experience this moment again. My heart is overflowing at the thought of it. The preparation, the worry how the tots will do, the uncomfortableness, the fear of the unknown, the inability to truly be or feel like myself- this all pales in comparison to the moment that is coming. And I am excited.

Motherhood includes a lot of moments. Awesome moments. But after a long, difficult pregnancy- this moment of meeting my newborn for the first time is my favorite. A moment so full of love- it kickstarts the difficult days ahead with joyful anticipation.

New life is a beautiful thing. The challenges that might be present for that new life, the lack of guarantee that that life will even sustain another day, the fear that I am doing everything all wrong- these things will come sliding in all too quickly after our moment is over. And as mother- I have no choice but to accept the things outside of my control.

But in that moment, none of that even matters. Because it is our moment. Mine and my new baby's. Even if the moment happens the next day in the NICU around many wires and machines. Even if the moment includes too much physical exhaustion to truly soak it all up. Even if the moment goes by too quickly. Even if the moment isn't exactly how I dreamed it should be- it is ours. Unique, beautiful, and quickly fleeting- it signifies the beginning of a bigger scale version of this same concept: motherhood.

So as I wait, as I dream, as I hope, as I work to make it just one day at a time- this is what pushes me onward. This is what propels me to the finish line. This is what encourages my heart (that is currently being smushed along with all my other organs- remember those good old days when I could breathe?)

Meeting my baby for the first time. This moment beckons me forward. 6 weeks.


Monday, October 14, 2013

Reasons my blog sits silent more than ever before...

I find my writing output has slowed down now more than ever before in the past three years of blogging/writing. Not because I don't have things to say.

But because I am tired. And fat. And tired some more.

I find myself wanting to write in a snarky way about the woes of pregnancy- but then I am so overwhelmingly thankful for the new life that is coming my way that I find myself unable to put words out there that could even slightly be construed as complaining.

I want to write in a "rah rah go team!" cheerleading way about Down syndrome and Down syndrome awareness month but then I remember that I'm the cheerleader with ankles so bloated that jumping up and down might endanger myself and everyone around me so I sit on the side of the arena with a snack, put my feet up, and give a thumbs up to those who are cheering.

I want to write about the joys of parenting toddlers- funny things that have happened with them- frustrating things that I am working through, but then I count the day a success if both kids are fed, some laundry is done, I find a pair of pants that fit, and Addison is hauled to and from school relatively on time. My computer is used to play a few minutes of Netflix before my nap as I listen to make sure my charges fall asleep before I completely pass out myself. Writing? I have a list of ideas stored up on my phone for when my brain returns to me.

The blog sits more neglected than ever before. (Note: last week this meant one post all week. ONE POST! If you were worried about me...with good cause. I kind of forgot I had a blog for most of the week because I was busy trying to remember my children's names.)

In times past this might cause some panic on my end. OH NO! I WILL LOSE READERS! Now...unless those readers are bringing me a tall glass of chilled whole milk (thank you sweetie)...I really could care less. The reasons I write have changed so drastically and my thought process behind blogging is constantly evolving. If I have times where the drive behind my blog is drifting a bit? There is a good reason. More important things are taking priority. Like napping. (and believe me...to keep up with Toddler1 and Toddler2 while hugely pregnant makes napping a necessity)

Today I attended Addison's first IEP meeting of the school year. Old Deanna would have gone in with her advocacy sword sharpened- ready to FIGHT and then run home to write a post all about it. Today's version of Deanna? Was very proud of Addison, extremely pleased with Addison's team, and positively radiantly joyful that she found a parking spot AND made it on time to the meeting while wearing a shirt long enough to cover HER ENTIRE BELLY.

This is something that I worried about. With Addison being our first, we had to make a choice- focus completely on Addison and giving her the attention and help she needs 100% of the time....OR divide that attention amongst siblings who can provide a family environment for her to thrive amidst for the rest of her life. Believe me, this was not an easy choice. And since we are now on Baby #3 in 4ish years...it's fair to say we chose to focus on the family aspect of this all. Was it the right decision? Who knows. I see children with Down syndrome who are only children doing AMAZING. I see children with Down syndrome growing up with close siblings doing AMAZING. I don't think there is a right and wrong here. I think it's a make-your-choice-and-live-with-it type of deal.

Thankfully Addison's IEP went extremely well today so there really wasn't much to fight about even if I wanted to (thank goodness). And hopefully my energy will be back up to normal fighting/writing level if the need should arise. But for today? I fed my family. I clothed my family. I took a nap. SUCCESS.

Oh yes, today I also started to listen to Christmas music. Because surely pushing this next month along seasonally will help push this last little bit of pregnancy along. Well, at least it doesn't hurt to try... (Plus, Christmas music helps with the pregnancy cranky....which I have discovered comes in much larger doses the more toddlers you are chasing around)

Also helps the "cranky"? Nice words from you. A wonderful lady came up to me at church on Sunday, and after giving me looks of profound pity and "YOU HAVE THAT MANY WEEKS LEFT AND YOU ARE THAT FAT???" smiles (Ok I made some of that up), she confessed that she has five children and she misses this stage. The unborn baby kicks, the toddlers, the having children at home in such a joyful stage. She just sent off her oldest into the big bad world post-college, and she wishes she could turn back time to when her kids were all little and under one roof. I'm sure she was slightly confused as to why I then started bawling...but turns out "the cranky" is close neighbors to "highly emotional" and I really appreciated her perspective. It helped me make it through the next week day hour.

To sum up this very rambly post:
1. I just made up the word "rambly"
2. Christmas music in October is awesome
3. Addison is rocking out her school year and soon I will find the words to write all about it
4. Sometimes pregnant women get cranky
5. I am a bad cheerleader/advocator right now. And also- fat.


Photo evidence: 
Me, the large unborn man child, and the tiny hand that reached out of nowhere and grabbed my leg. #shoppingwithtoddlers
Now if you'll excuse me, I hear snoring coming from the pink and blue nurseries. Time to sleep while the sleeping is good.


Friday, October 11, 2013

Eating On The Table

Mothering brings with it a long set of rules. Not because anyone is forcing me to keep the rules or even telling me I should. Just because I want to do my best, run our household efficiently, keep my children safe, and teach them the many things they need to know about life. Plus, there's the whole sanity issue to consider.

For example- RULE: Do not touch the stove. HOT! NO! NO. I don't care that the stove isn't on- we still don't use it as a ramp for our trucks to park because we DO NOT TOUCH THE STOVE.

Or Perhaps- RULE: We do NOT go fill the bathtub with water, climb in fully clothed, and splash each other silly during that one unguarded moment inbetween Mommy dressing you and walking out the door to take Addison to school. Repeat: we do NOT.

Or even- RULE: You spill it- you clean it up. I don't care that you have the cutest pouty face, the most tired set of arms, and a cry to melt a heart of stone. You pulled that galloon of milk down onto the floor from the counter, causing the plastic to break and milk to flood the kitchen? You are grabbing a rag and helping mop up this mess. (even though your help honestly makes it take longer to clean up!)

Many of my rules involves table manners. Although to even say the words "table manners" in the same sentences as "toddlers" seems ludicrous somehow. As if it is a goal so unattainable it's like chipping away at an iceberg with a soggy toothbrush. (Which reminds me of another rule: STOP using mommy's toothbrush as 1. your own 2. a weapon 3. a cleaning device)

Maybe I'm the only one- but getting both kids to sit, feed themselves neatly, drink out of a cup without dumping the entire thing on the floor and to NOT THROW FOOD three meals a day, seven days a week is more difficult to achieve than Nirvana.

My dining room table has a pending lawsuit against me, the floor under the table has lost the will to live, and 90% of my glass bowls have been brutally murdered (after being thoroughly tortured). No matter how patient I am throughout a day, meal time reduces me to either 1. a sobbing mess 2. insanity 3. mean, mean mommy who does horrible things like yell and turn red in the face when that bowl of beautifully crafted fried rice sails across the room like it somehow magically sprouted wings and decided to take an upside down spin around the room.

Mealtime is a battle around here. (Auto correct changed that to "Meantime". Wise, wise computer.)

But the thing is- this morning as I ate breakfast with Miss Addison, I realized that sometimes these rules are meant to be broken. You see, Addison has this burning desire to eat while sitting ON the table.

Big rule no no.

She bends her flexible self right out of her booster seat straps, climbs on up, holds her bowl in the cutest of ways, and feeds herself quite neatly (all things considered) IF she can sit on the table...with a standing ovation in front of the mirror hanging over the table with some singing and dancing.

This morning Carter was still sleeping; Addison and I sat across from each other at the table with our bowls of cereal; and she started to climb up on the table. And...I'm not even sure why, but I let her. She came over right next to me, fed herself like a pro each piece of Crispy Rice Hexagons doused in milk, and smiled shyly at me between each bite. I tucked her hair behind her ear, let go of my rule, and just enjoyed the moment with my girl. We chatted, we listened to some music on my phone, we enjoyed each other's company. It was delightful. And you know the best part? After her cereal was gone, she said "All done."

I said "All done?" or "More?"
She said "All done" quite decisively and then looked at me earnestly and said "Oatmeal"

A NEW WORD!!! AND REQUEST!!! Nothing makes me happier than Addison communicating what she wants.

I jumped up, made her some oatmeal (she waited quite patiently on the table...admiring herself in the mirror the whole time). I brought it back and it was hot, so we blew on it together (she kept laughing and smiling between each puff of air). But then it was still pretty hot, so she let me feed her bite by bite, blowing on each bite before letting her put it in her mouth. SHE LET ME HELP HER!

Miss Eat-One-Bite-And-Then-Throw-It had now consumed ONE bowl of cereal and ONE bowl of oatmeal. The entire thing.

When she reached for my coffee saying "MINE!", I went to get her a cup of milk and said "THIS is Addison's"

Granted, she then took a sip of milk and spilled the rest....but when I gave her a paper towel she cleaned up the ENTIRE puddle of milk on the table. And wiped her hands (with the same paper towel...lol)

Around here- these are all pretty big victories. And it all started when I let go of my DO NOT SIT ON THE TABLE WHILE YOU EAT rule.

Motherhood doesn't always look like the picture in my head thinks it should. Sometimes an awesome morning in motherhood involves letting my toddler sit on the table, eating oatmeal, laughing with my mouth full, feeding every other bite to Addison, and leaning in close to my sweet girl to let her know that a bowl of cereal has never tasted better than the one shared with her. On the table.

Hmmmmm....perhaps some rules are made to be broken? Not always. Not forever. Just when something else is more important. I don't even know how to define this or even how its supposed to look. I just know I felt it this morning during an amazing breakfast with my daughter. It didn't look like a neat and tidy breakfast, and it certainly broke many Emily Post rules...but it was amazing.

This is actually pretty good timing because my Dining Room chairs just resigned today....coated in Greek yogurt and creaking like unloved antiques...they just walked out the front door saying something about having had "ENOUGH"...slamming the door behind them and disappearing down the street. Enough? Whatever that means.

I have extremely limited energy. I have to pick my battles. And my moments. And goodness knows I need more moments than battles right now. The connection with my kids is what gets me through each day. Safety rules? Non negotiable. Some of the others? I don't think it's as black and white as the TODDLER MOTHER HANDBOOK would have you believe. Sometimes different children need to learn different things different ways. Addison teaches me that daily. Today she learned 1. how to eat a BIG breakfast before school 2. How to ask for what she wanted 3. How to cool down her oatmeal 4. how much her mommy loves her. Success. Sacrificing the "on the table rule"? Worth it.

Dear future Deanna,
If an occasional meal ON the table is necessary for your sanity? Do it. Or else you and your handbook will soon be all alone in the loony bin...(although...does the loony bin have unlimited Netflix streaming? Because maybe we could work out a deal...)

Thursday, October 3, 2013

Individuals with Down syndrome- They Are All_________

Down syndrome awareness month. I don't even know where to start.
In years past I've felt the need to prove something. Argue something. Stand up on a soapbox and proclaim to the world a truth that they were missing.

Now? Down syndrome awareness month is just another month in which I am blessed with a beautiful little girl. She is a lot like other little girls, but just like other little girls she has something that makes her unique. And her something? Is an extra chromosome.

Don't get me wrong- just because I've settled into a comfortable place with Down syndrome doesn't mean that I think that I should stand down from my soapbox and live my truth quietly. No, I still spend a lot of time on that soapbox. But my speeches aren't to convince myself anymore. I am convinced. I believe. I am happy. If I talk about Down syndrome, it is to share my daughter's truth to those who will be interacting with her. Those who have the choice to accept her or snub her.

And to be completely honest- I feel like this blog is a year round Down syndrome awareness campaign. Not by arguing, or being super flashy, or discussing Down syndrome abortion percentages. Simply by living. Living lives that are full, rich, and beautiful. Lives that include an extra chromosome but are enriched by it- not tainted, suffering, or sad. Awesome lives.

The more I learn about Down syndrome and meet families and individuals in similar circumstances, the harder I find it is to make broad statements about Down syndrome.

They are always_______
They will have delays here:_______
They will success in these areas:_______
They will have these health issues:_________
Their lives will turn out exactly like_________

I've learned that our truth with these issues are certainly not everyone's truth. My daughter's health problems are not exactly the same as every other person with Down syndrome. Her personality is quite her own- thank you very much. Her delays are different from peers with Down syndrome. Her strengths are different. Her uniqueness can perhaps placed on a spectrum of Down syndrome-like qualities, but can't be defined by the whole.
The way I see it, this spectrum is a large circle with infinite possibilities of combinations inside. Addison is one of those combinations. Her genetic makeup is within that circle, but her uniqueness stands in a pink square all its own:
And believe me- she's standing on that pink square dancing the hokey pokey in her own special way. Imagine if you will that circle filled with different shapes- all different colors- all different sizes- all different textures. Each shape falls within the broader circle of Down syndrome- but still unique unto itself. (also- imagine this circle is much, much, much bigger.)

I kind of actually get annoyed when people assume things about Addison just because she has Down syndrome. They assume that she will be exactly like that random stranger they briefly met in the grocery store three years ago who had Down syndrome. They assume that her personality will be always happy because that is what the stereotype teaches. They assume that her strengths and weaknesses are defined for her, and that she is pre-programed to turn out a certain way no matter how great of a life we give her.  They assume that her uniqueness is defined solely by the fact that she has Down syndrome and includes nothing of her own.

The more people I meet- read about- learn about- the more I realize just how different each and every individual with Down syndrome is from each other.
You know -like actual people.

So this year I'm struggling a bit with Down syndrome awareness month. Yes, my daughter has Down syndrome. She also has curly hair, blue eyes, and a stomach that begs for tickles. I bet that would describe a lot of different little girls- but not completely define them. We are dealing with some typical toddler frustrations right now- compounded by the fact that her communication skills are so poor. But you know what? I know of some of Addison's peers with Down syndrome that do not have those same communication struggles. Yes, they have toddler frustrations- but highlighted by different weakness than Addison's. I also can list a lot of awesome strengths that Addison has that other toddlers with Down syndrome don't. Strengths and weaknesses- different for everybody.
So I guess if I had to sum up something about ALL individuals with Down syndrome- it would have nothing to do with personality, physical features, health problems, or futures.

No- it would go something like this:

Individuals with Down syndrome....they are all people. They are drawn in a circle of awesome extra chromosomeness, but each with their own definition of life. There might be some overlap here and there with certain features and possible delays, but there is no formula for EXACTLY how this should look or play out. Family features shine through. Beauty is present. Character and a zest for life will be painted- but differently for everyone.

It's hard. It's easy. It's amazing. It's frustrating. It's life.
I am proud to have my daughter drawn into this circle labeled Down syndrome. I am proud to stand beside her and help her to the best of my abilities. I am proud to be a special needs mom. I am proud to love her for exactly who she is. But I am also proud that she is her own person. Down syndrome is a big part of her, but it isn't who she is.

Who she is- what she makes of her life- that's up to her. And I'm proud of that too.

Celebrating Down syndrome awareness month- it's so much more than trying to argue our way out of stereotypes, list similarities, and shout to the roof awesomeness. It's about recognizing that these individuals are worthy- of life, of potential, of respect. It's about setting aside differences and acknowledging the person. It's about kindness and hope and pride and love.

We're really lucky around here. We get a daily reminder of this. But this month dedicated to Down syndrome? I invite you to celebrate with us.


Tuesday, October 1, 2013

Teaching him to slow down for her

It was time to pick Addison up from school. The day started off with a gorgeous fall cool, so my tiny gang and I dressed appropriately in sweaters and fleeces. But now at pickup time- it was warm.

Normally I load Carter up in the wagon or I let him pull the wagon, and we begin the long hike down to Addison's playground to pick her up.

But I was feeling confident this morning. Carter and I spent all morning at stores- practicing obedience. Staying by mommy without being buckled or strapped down somehow, listening, responding, counting to three- he was acting like such a big boy.
Ready to walk with my little man on this beautiful fall day, I held out my hand; he placed his small one in mine; and we walked side-by-side the other direction down the long set of stairs to the playground. These stairs make the walk shorter distance-wise but are normally out of the question for us because of the need for the wagon.

All was going well. Wagon? Who needs a wagon?

We got to Addison's playground, chatted with her teacher, gave Carter a few minutes to jump on the stationary dinosaur that was right outside the playground fence, and then said our "thank you"s and "goodbye"s.

The trouble started when I needed to coral them both back towards the long steps. Chasing them both down different directions (with the help of Addison's aide)- I finally got them on track.

Once they were both on the steps, I had a 'brilliant' idea.

"Carter- could you please hold Addison's hand? Help her up the stairs."

Addison reached out a hand to him, he reached a hand out to her, and they began walking hand-in-hand up the many stairs. Ahhhhhh, these are the moments that I live for as a parent.

Success lasted only for a moment.
A problem soon became quite obvious. Carter could climb stairs much faster than Addison could. Much faster. Addison needed the support from Carter's grasp to walk upright. Carter did not need the help from Addison. Carter wanted to run up the steps. Addison struggles with steps still- this is a new skill for her.
Since Addison was holding him back- cramping his style- Carter abandoned her hand and jetted off for the top of the stairs at his desired speed. fast. Every man for himself. Right?
Addison reached out her hand for his help- but he was long gone. The moment was soon just a tiny speck on his radar, but Addison? She could no longer walk upright without his support. She had to finish the steps crawling up- until I picked her up and carried her the rest of the way. (I would have held her hand too but we had to run to catch up with Carter.)

We struggled the rest of the way back to the car, because Carter had discovered that he didn't want to go at a slower pace. Why should he? He didn't need to walk as slowly as Addison was walking. He didn't need help climbing stairs. Why should he slow down and hold his sister's hand? What's the point? What's in it for him?

They were soon buckled safely in the car, and other than me swearing that I wouldn't try this again without the wagon (at least while I can't easily run to catch up with Carter)- the incident was over.

But I couldn't get it out of my mind.

I was struck with the thought that I have to somehow teach Carter that just because he can go faster doesn't mean he always should. That patience, grace, and a willingness to change his pace for his sister would benefit them both in the long run. That sacrificial love for his sister in these little things will mean the world to her- even if he never gives them a second thought. Carter will always have Addison in his life. I'm not so naive to think that just because they live together, they will magically love and help each other through the many stages ahead.

But I was stumped. How do I teach this to him?
Was I expecting too much out of a two year old to want to teach him to help his sister when he could? And if he was too young to learn this now- when do I start as to not miss my window of opportunity and end up with a teenager who resents his sister?

The more I thought on it- the more I realized that this is how I viewed such things as Down syndrome before Addison was my daughter. I would pause on that bottom step briefly and lend aid as long as it was convenient to me. As soon as the moment got real, or I couldn't understand what he/she was saying, or I got uncomfortable in any way with the pace that I didn't choose- I immediately jetted off to the top of the stairs at my super fast pace because I could.

Having patience with other people is not a strength of mine. (Just ask my husband how I responded when he drove off to work with the car keys I needed to take Addison to school yesterday.)

Since Addison has come into my life- I have learned a new kind of patience with her because 1. of her special health/cognitive needs 2. motherhood is all about the baptism of patience (well, that...and the baptism of bodily fluids)

But the more I thought about this, the more I realized that the way to teach this to Carter was to model it for him. Not just the way I treat Addison. The way I treated all those around me. Like Aaron (even when he steals my keys), and those people who really frustrate me because they aren't doing things the Deanna way.

I keep picturing her outstretched hand. Her plead for help. And his refusal to listen because he was BUSY. This reminds me of myself. And it scares me for what it means for their sibling relationship when Carter is old enough to choose more things at his own pace. Yes, he is young. Yes, it is probably expecting too much for him to grasp the significance of all of this right now. But- it is the perfect time for me to show him how this should look, redirect his attention on this matter whenever I can, and make each and every teachable moment count.

Is there a time for us all to go at our own pace? Shouldn't I be praising Carter for his ability to climb stairs so quickly? Admiring his strength and speed? Am I a horrible mother to WANT Addison to hold him back from his obvious physical abilities?
I think mainstreaming is a wonderful thing. I think the lessons that Carter can learn from Addison in instances like this one will teach him far more about life than anything else could. Yes, Addison will benefit from Carter's help. But he will benefit from her too. How? I can't exactly pin point this yet. It's something that I'm waiting to see unfold. But I'm confident that it's coming. So confident, that I want to purposefully fill my responses in life with more grace and patience in order to model this to my children to help this become reality in our family's life.

I think that we are all given strengths that somehow are meant to help specific weaknesses of those in our lives. Carter is very physically strong. Addison is not. He can help her in many ways. Addison has a sweetness about her that could really do some serious improvement to the rough edges hanging around Carter.

Who says achievement has anything to do with utilizing our strengths for personal gain? Maybe achievement has far more to do with how we use those strengths to help others than it does for what we can do for ourselves. Maybe true achievement in a child's life isn't how fast he can climb stairs, but rather how patiently he helps his sister- who struggles with low muscles tone- climb them all the way to the top.

I certainly don't have all the answers. But I do have a dream for my children. A dream that they will love each other. And help each other. Even when it's inconvenient. Even though they are so different from each other.

How will we get there? One day at a time. One set of stairs at a time.
October is Down syndrome awareness month. I do not have the energy to blog every day this month to raise awareness, but I will try to focus more of my posts this direction. If you find yourself viewing Down syndrome as something that you will tolerate for the bottom step, but then run up the rest of the way as quickly as possible- I ask you to slow down and look, really look, at the things that you might be missing because of your fear of different or impatience with a difference pace. Hold out your hand, grab on, and enjoy the benefits that come from helping/learning about someone who possess many hidden talents.