Monday, September 29, 2014

Leaving The House

Surrounding me in life right now are some friends who are worth their weight in gold. Friends who are amazing and who completely inspire me. Friends who I want to spend as much time as possible with, go on double dates with our husbands, have many playmates with our children, and learn from their incredible strengths as much as they will let me.

But lately (this past week was especially bad), every time I receive a text from one of these awesome friends along the lines of "Hey! Let's hang out this afternoon!" or "Free adventure with the kids today. You in?" or "Playdate and lunch in town?" I type back a super lame excuse about why that won't work for us that day. Most of these excuses cite something about messing with nap time or much needed grocery time or recovering still from our last adventure- a week or so ago. Super lame stuff.

And I have been feeling bad about my excuses and turning down of adventures. I have been feeling guilty about turning friends down for opportunities for getting out there, taking life by the horns, and having an awesome day with my kids. I feel even worse knowing that this beautiful weather is on a short timer, and soon feet of snow will pile up outside our houses and force us all to hibernate our social lives for a few (dozen) months.

So why? Why am I being a recluse? Why am I being rude to my friends and avoiding getting together? Why do I say no?

It's simple, really. And it makes me sound like a ginormous whiner with no backbone or ability to "get things done." It makes me sound like a blogging cliche. Ready for it?

The truth is, dear friends, it's not you. It's totally me.

The truth is- it is freaking hard to leave the house these days. So, so, so, hard. A sandwich of hard filled with the jelly of difficult.

I don't know if it's just because Addison still needs me to do everything for her and care on the top end of my children hasn't peetered down to more self care- or if it's just the nature of having 3 small children with the smallest still being under a year. I don't know if it's because it is IMPOSSIBLE to find 3 pairs of tiny matching socks and 3 tiny pairs of matching shoes and pin down 3 wriggling balls of "got into a mess while you were doing this with the sibling" to put these matching sock and shoes on- not to mention complete outfits that mysteriously disappear in a flurry of giggles after I have already laid them all out.

I don't know if it's because potty training has given my children waaaaay too much power. "Hey mom! I know you just finished the marathon called dressing us all and you are holding car keys and are opening the front door holding the baby in the car seat, but I'm going to sit here on the potty for 45 minutes and read this book while I tell you I have some business to do when I really don't at all! I love how much power potty training has given me!!!" type of thing.

I don't know if it's because my children are insane and if I turn my back for a minute to do selfish things like find clothes for myself to wear that day, Carter has climbed to high heights, located the hydrogen peroxide, and is pouring it into a 3/4 full jar of Costco strawberry jelly. And then I have to call poison control because I'm just not sure if he encouraged them all to take sips of it first. (fyi- if your child drinks hydrogen peroxide- they will just throw up. Vets often use it to get animals to throw up if they have eaten something they weren't supposed to eat.) And then while I'm on the phone with poison control, someone will walk over to an outlet that they have passed a million times without touching and all of a sudden decide to shock themselves so that the next ten minutes are spent soothing a crying little girl who is so upset that she can't tell me where she's hidden everyone's clothes that she pre-licked with a mouth still dirty from breakfast.

I don't know if it's just that I'm so severely outnumbered that gathering up my brood to head out the door, clothed, poison and electric shock free, pottied up, fed, and ready to Adventure with friends- feels a bit like juggling water in my bare hands.

I don't know if it's the fact that once we actually go out of the house- there has to be a very specific plan of how all 3 children will be managed for the outing. The triple wagon is preferred- because everyone needs a buckle, a seat, a cup holder, and their own snack bag that can't be grabbed by another sibling. If a child is NOT buckled, they will walk like an angel for the first two minutes, and run away like a wild animal on a caffeine and sugar high (note: my children are never allowed caffeine and are a limited sugar diet. but they still act this way. every.time. Carter especially has an evil side that comes out as soon as he is buckle free. Ask me how I know this. Just.ask.me.) If we adventure somewhere where they are grocery carts- I have to have a double cart or it is a no go. If we adventure somewhere where the wagon won't fit well through winding slender halls (cough cough Dartmouth medical facility) or somewhere were the ground is super bumpy or steeply downhill- it makes it very difficult to maneuver. Not to mention- once we are out and about, my ability to do time outs and keep my children in line is greatly cut back. Outnumbered with 3 misbehaving children means…we sometimes barely make it home in one piece. And sanity is sacrificed along the way. And when we arrive home, I often don't even like my children anymore. (I prefer to like my children. It makes life easier.)

Add in necessary potty breaks, Addison's school drop off/pick up schedule, and the absolutely necessary outings that drain us completely before the fun has even started (ahem grocery shopping)- my adventure radar is very low. Extremely low. So low that we walk out to the deck, have a glass of water, and I ask the kids "Isn't this a FUN ADVENTURE!!!" just to help set the bar super low.

If we have a free morning without school for Addison- without responsibility- and without necessary outings, are we good to go then? Um…I have a secret for you. Those are the BEST mornings for EARLY NAPS all around! And then I get 3 hours of beautiful, blessed silence to sit and do awesome things like…blog, or read a book, or sketch out an actual menu before that afternoon's grocery trip. I know. I am spoiled. So spoiled. Especially since these low key mornings involve the super pampering activity of scrubbing floors- or folding laundry. It's like a mommy vacation. Not to mention, if I can take a morning without having to locate 3 pairs of matching SOCKS and SHOES and seasonally appropriate CLOTHES? I take it. I take it every time. Sleepers are my best friend. (Just check my Instagram feed.)

This week I had to take all 3 kids to Dartmouth for Addison's appointment with her tonsil/adenoid surgeon. I had to take them alone. It is an 1 1/2 drive. It was a long appointment followed by x-rays that she needed before her surgery. It took me the rest of the week to recover. Seriously. It was a week from tomorrow but I think I'm still recovering from the outing. Alone. With all 3 of my beautiful children. It might be a month before we are ready again for an adventure. Maybe two months.

So there you have it. I am a wimp. A mommy wimpy that needs weeks to recover from outings, and hesitates very strongly to schedule new ones. A mommy who loves outings if Daddy is home to help/go with us, but who isn't always up for it on her own. A mommy who loves her children VERY dearly, but often finds herself maxed out just to get her daughter to school, to the doctor, and to buy food to put into 3 bellies that constantly seem to be demanding more.

I have systems. I lay things out the night before. I plan. I get better and better and wrangling 3 children and getting them clothed and safely buckled into the car. But there are so many variables involved in that that I can't control, that I often say "no" to extraneous outings (especially when naps might be affected.) I want to hang out. I really, really do. And hopefully soon this won't be so hard to cross over the threshold of my door to freedom. Hopefully soon it won't be so.freaking.hard. to leave my house. I dream of this day.

Dear friends,

It's not you. It's me. I love you dearly. I promise.

Sincerely,
The Mommy Wimp

I think the thing that get me is- I know so many moms who are AWESOME at adventures with their kids. Who get out of the house frequently just to have FUN. I wish I was this kind of mom. But I'm not. I know this about myself, and I do my best to keep things running smoothly around here. This means sometimes saying "no". When we have a lighter week- we can fit in more extra. But when the extra becomes too much? It is the first thing to go.

I am very thankful for Facebook, texting, email, and early bedtimes when Daddy's home and I'm able to escape for a few hours. I am very thankful for the chance to maintain friendships the best I can.

Oh, and no doubt you are feeling sorry for my poor, adventure-less kids right now. Don't. They have an awesome life. We have gotten really good at making adventures and fun out of daily activities. We have reading time, singing time, art time, they are learning to help with housework, and they have become great at playing within and exploring our little space here. Plus- just the other morning we did a super fun science experiment with Hydrogen Peroxide and jelly (!).

So tell me. Do you adventure out a lot with your kids? What's your secret for getting things to run smoothly and everyone to have fun? What's your secret to leaving your house? Tell me everything.

Monday, September 22, 2014

Speech Update


Who said this?:

"She clung to my leg, not speaking, not signing, but whining like a tea kettle on boil that refused to cool. It was obvious that she wanted to say something- ask for something, but she simply couldn't.

I asked her every question I could think to ask. I showed her objects that maybe she might like to eat. I cycled through her vocabulary of signs hoping she would mimic one of them back to me. I begged with her to tell me what she wanted; why she was whining; what I could do to help her.

Her only response was to whine some more. A never-ending whine that carried with it frustration, sadness, and so many unspoken thoughts that she couldn't release past her lips because it was just too difficult to make her mouth obey her mind."

and who said this?:

"Feeling like the most terrible mother in the world, I thought about how unfair this is. How unfair that I have spend hundreds of hours with her in speech therapy and yet her ability to tell me why she is upset still isn't there. How unfair that I have married my soul to Signing Time but in her time of need her small hands rest still at her side. How unfair that after three years of dedicated, diligent work I have a three year old with barely the communication skills of a one year old.

It is frustrating. It is draining. It is unfair.

Carter is already communicating so much better than she is, and this breaks my heart in a new way. Will she ever grow up enough to tell us what she wants? Will my bond with Carter grow stronger than my bond with her because he's able to share with me what's going on while her only solution is this madness-inducing whine?"


and even this:

I tried to find peace within myself over this. I tried to turn it into a sparkly end-of-the story moment that would prove to me that all of this work was for something even though speech progress seems to be at a death crawl. But I couldn't find peace. Because there's no guarantee that Addison will ever be able to share her thoughts with us. There's no guarantee that she won't always be practically nonverbal. There's no guarantee that she won't be a ten year old on the floor whining just like she did that morning. I felt myself pushed over an invisible edge that I didn't notice was there until I found myself falling.

And then I cried. I cried for what I felt I deserved based on the work I had put in. I cried for the frustration that was probably just beginning. I cried because this was hard.


It's unfair that she has worked so hard in Speech Therapy for hundreds of hours and yet she still can't tell me what she wants. It's unfair that she has dedicated so many hours to Signing Time and yet in her moment of need she can't put together the signs to say the thoughts buzzing around in her head. It's unfair that after three years of working hard to get healthy, growing, and learning she is still so far behind other children who have done these same things with a lot less effort."

Yes, you guessed it. I said it- almost 2 years ago about Addison.

Why do I bring this up today? Because today a little girl wearing her twirly pink skirt and puffy vest waved to me and said "Bye, Mommy!" as she took Mrs. T's hand and went to school.

Because this morning before school I asked Addison, "Do you want cereal?", she replied, "No. Toast."

Because even before that, she woke up in her room and yelled "All done now!"

And then grabbed her clothes and said "I want help."

At lunch today she finished her yogurt and said "More please mommy. More -gurt."

Last night when she emerged, dripping from the  bath, she said "Towel." After I wrapped her in a warm, dry towel, she handed me her dripping wet doll and said "Eli towel and sleeper." (all babies are named Eli, don't you know?)

When Eli runs into her with his walker, she yells "NO Eli NO. No hit me."

and when Carter picks on her, she yells "No Carter!"

When she needs to go potty, she says "Potty. Potty. Potty"

When she wants to read, she says "Book, please." Or "watch Signing Time."

As soon as she gets in the bathtub, she demands "Bus song!"

and while we eat dinner she asks "Story."

If I forget to get her utensils, she yells "SPOON!"

If she is thirsty, she asks "I want water."

When I repeat an instruction to her and asks if she understands, she says "OBEY."

When she wants to go outside she says "Outside!" or perhaps "Car! Walk! Papa's House! Ice cream! Aunt Kiki!"

And when it is HER turn she makes sure I know "Addison turn. Addison turn."

When I hand her something, she says "Thank you."

I could go on and on. What's my point?

I cannot believe her speech explosion. I mean, seriously- wow. She has found her little voice, and she is not afraid to use it. I just wanted to take a minute here on the blog to look at this past post, and say YAYAYAYAYAYAY!!! 

The whining from two years ago has turned into communication of basic wants and needs with us. 

So many of you told me to be patient and that she would talk in her own time.

Well guess what?

You were right.

And I shall continue to be patient as her speech continues to develop. 

She is amazing.  I know this, because she told me so.



Tuesday, September 16, 2014

A New Day

I would be remiss if I didn't write out this blog post immediately after yesterday's post.

Because the same little boy who destroyed baked goods yesterday was the same little boy today who held tight to his sister's hand and gently guided her up the path to the Pediatrician's office. The same little boy who gave me such fits yesterday morning, turned to me so sweetly at the doctor's office and said while pointing "Look Mommy, a triangle!" The same little boy who had me pulling my hair out yesterday had me asking for hugs as his hurtled his body into my arms with a grin.
The same Mommy who yesterday thought "I can't do this I can't do this" today thought "Wow I am one blessed woman."

It's amazing the difference 24 hours can make.

I love this blog because it is my safe place. I write honestly about motherhood even though I know that this doesn't always come across as rainbows and unicorns. I am okay with that. I don't write for people to feel sorry for me or to pity me. I write because to me it is therapy. To explain the morning in acute detail had me laughing at myself and putting it behind me that much faster. And I share it because I figure that perhaps it might be therapeutic for some of you too.

I always hesitate to publish those posts that might be perceived as negative. After all- this is the internet. My kids will mostly likely read all of this someday. Am I afraid that they will know that I think that raising them is hard at times? Will they read my words and feel a sense of betrayal that I struggled?

No. Quite the opposite. I want them to know that this is hard work. Because I want them to know that hard things are worth doing. Struggles are worth fighting through. And that they are worth all of the bad days in the world because I am lucky enough to share life with them.

Today as they laughed together, played together, grabbed for each other's hands, wrapped arms around me, listened intently to story time, begged for "MORE!", and sang along with hand motions to our bath time song routine- my heart swelled with love.

Today chubby cheeks lifted in smiles, blue eyes danced with delight, small feet danced, and exhausted tinies napped hard. Today we seized each moment and loved it all that much more in contrast to yesterday's fiasco. Today we did boring stuff like go to the doctor and fold laundry and yet we did it all together so it was an adventure. Today we made chili and no knead bread and snuck in extra croutons on the salad. Today was a good day.

Are they all good days? Nope and no. But the bad days are worth it. The tough moments are worth the fight. The struggles are worth the tears. Because motherhood is the good and hard all wrapped up together in soft arms that give long hugs while a voice whispers "I wuv mommy" in your ear. For every bad day? There are tons and tons of good ones.

I'm not going to lie, this summer has been a difficult one. With it being Aaron's busy season and Eli becoming much more mobile and the toddlers pushing every boundary- my days have redefined chaos. My number one priority has been keeping each child safe. Sometimes I don't have the energy left to go much beyond that.

But the trees are changing colors into their glorious palette of fall, and my motherhood season is changing along with it. Toddlers grow older and more independent. Babies grow into toddlers. And Mothers become wiser by the day. Not wise enough to help the issues of yesterday. But just wise enough for today.

Little girls who struggle with speech break out into tons and tons of words. Little baby boys start dancing along to every song ever. Big boys start holding conversations and relaying to Mommy what actually happened when she left the room. The days shorten, which means that Daddy is home earlier.

And soon what seems like a tough just-make-it-through-one-more-hour job becomes the biggest privilege in the world. Because yesterday is done and tomorrow looks bright and glorious.

I am thankful to be a mother to 3 beautiful children. I am thankful for the good days and the bad days. Because I learn different things on each different kind of day. For example, today I learned that I love this. I love being a mother to 3 kids. I love that they have each other. I love that I get to know them better than anyone. I love that they are my family.

The season is changing. In addition to immediately craving pumpkin desserts, hot beverages, and the smell of wood stoves firing up all over the city in the night air- this fall I want to gather my little brood close and make some more memories. Because the last season seemed to go all too quickly.

3 kids. It is hard. Sometimes baked goods get destroyed and little girls are late for school.

But it is worth it. Every single bit.

Monday, September 15, 2014

The Best Rolled-Out Plans...

I had big plans for this morning. Organized, well-laid, foul proof plans (notice I didn't say fool proof.)

This morning was our first Preschool Mom's breakfast at church after the summer break- Cross Connections. And because these breakfasts have meant so much to me in the past, I was excited to be part of the team who helps set up for them each morning and organizes the food.

However, this did put a bit of pressure on this morning. Mornings are already quite chaotic and a lot crazy around here as I try to feed/dress/diaper/toilet all 3 children alone and then get Addison to school on time for a 8:00am drop off.

But no problem, I thought. I got this.

I was in charge of bringing a baked good, so I decided on two pans of homemade Cinnamon Rolls. I love to make them, and rarely do for our family because I end up eating them all. So I started mid afternoon yesterday with the making of the dough and letting it rise. I rolled out a house sized piece of dough. I spread delicious toppings. I sprinkled on extra love (this is also known as cinnamon). I rolled up the masterpiece. I sliced carefully- measuring first. I let it rise again. I baked my lovingly prepared works of art.

I was working long past the kids went to bed as this whole process took time. Since I was already up and going- I tackled the rest of the morning prep. I picked up the house, swept it, wiped down counters. I packed snack for Addison. I picked out 3 tiny outfits complete with pairs of underwear and socks. I shined the house all over and laid out every single item that we would need the next morning.

Pretty much all the kids would have to do was to roll out of bed and onto a stack of clothes which would automatically attach itself to each child and then launch them directly into their carseats while tossing dry cereal into their mouths.

Score. The stressful, packed morning should go smoother than a baby's face after a yogurt facial. Planning makes everything better.

Or so I thought.

The day started out okay- nothing too traumatic other than a super early start. First Addison woke up with an announcement to the world that "I NEED TO GO POTTY." The baby blinked open sleepy eyes and smiled that smile that loosely translates "if I don't get a banana into my belly in two minutes, this smile will quickly turn itself upside down."

Handled and handled.

The problems started when Carter Henry woke up. Rising from his toddler bed with an adult sized chip on his slim little shoulder, he was out to make trouble. I realized this when he spilled his cereal all over the floor. I even more realized this when I was changing the baby, heard silence, ran into the kitchen, and found him absolutely demolishing an entire pan of my beautiful, beautiful cinnamon rolls. Hands poised into the baked good as if massaging the back of a cat that he hated, he grabbed handfuls at a time and threw them around as if his mother HADN'T spent her whole afternoon laboriously perfecting those rolls. While mutilating my love child made of dough, he grinned. GRINNED.

I smiled with patience and graciousness and said "Oh sweetie, no, no." while gently patting him on his head. Just kidding. I totally lost my cool. I carried him, kicking and screaming (he kicked and screamed a little too), into his room for time out until it was time to leave the house. My thought pattern was along the line of "I cannot do this. I just cannot do this."

While I was dealing with him, Addison decided to go stick her head in the toilet. Yes, you read that correctly. Stick her head all the way into the toilet until her hair was wet and dribbles of water were sneaking down her cheeks.

Biting back anger at this point, I carried a kicking and screaming Addison over to the shower. I shampooed her hair as quickly as possible, rinsed her off, and wrapped her in a towel to go try all of this again. She cried about the meanness of her mommy the whole time and then begged for "T" because no doubt "T" never gave her quick showers that accidentally got soap in her eyes.

Carter was screaming toddler version of obscenities from his room. "No No NOOOOOOO! GET OUT get out GEEEEEET OUUUUUT NOOOOOW."

Meanwhile the baby was in the living room sticking all the laid out clean clothes (that Addison had thrown onto the floor) into his mouth still sticky from lots of banana.

Deep breaths. Deep breaths.

I finally got all the kids dressed and into the car, and we left (down one pan of cinnamon rolls and a lot of mommy sanctification.) We left the house looking like no one had ever cared enough to clean it. Ever.

We got to school and were ten minutes later than usual (hmmm about the same amount of time required to wash a girl who stuck her head in the toilet.) Because of our lateness, the class was not where it usually was. Or in her classroom. So we were stuck outside the school, unable to get in and her aide couldn't see us and come out like she normally would. My phone was way back in the car.

Another parent was gracious enough to go around front and down into her classroom. The triple wagon wouldn't fit into the elevator otherwise I would have just gone around front myself.

I finally got Addison dropped off. We finally got to the breakfast. I wasn't too late to help set up. I finally got both boys into nursery (glory be.)

I was so frustrated and defeated from the morning that I had planned to go perfectly. If it wasn't for these children, this motherhood thing would be so easy. It looks awesome on paper. And in my plans. But in reality, I have cinnamon roll destroying, toilet dunking, clothes chewing monsters that make me a mother. Monsters.

These were my thoughts as I settled down for the breakfast.

What were themes that kept reappearing? Loving our children unconditionally. Motherhood is a race. The ability to know our children better than anyone else- and them know us. The opportunities that lie in the preschool years. The rare gift that is the lives of children.

But my mind kept going back to "loving our children unconditionally."

With Addison's diagnosis, I learned this a very hard way. I actually thought at first "I can't love her now." As if an extra chromosome meant that she didn't meet the conditions for my love as her mother. But then she has taught me to love her unconditionally. Extra chromosome or no- she is my beautiful daughter and I love her fiercely. Not for who I wish she was, but for who she miraculously is.

But do I offer Carter the same opportunity? Do I still love him when he's a perceived monster?

When my patience disappears and my voice snaps at them because HOW DARE THEY SET BACK MY MORNING ONE MORE WAY- am I loving them unconditionally? Am I showing them grace? If they are the ones who know me best, how will they remember me? Like this? Will they remember this morning and the "MONSTERS" look in my eye that I gave them?

The morning out was very refreshing and challenging (as opposed to the morning in getting ready for the morning out.) And Carter? Ran around in the gym so much all morning that he came home and passed out cold for 4 hours. FOUR HOURS. A lot of mommy sanctification can be renewed in that space of time. A lot.

I want to be the perfect mother who never looses her cool. I really do. I want my children to be perfect little children who walk in straight lines and ask their questions in perfect fifths. But is this reality? No.

I've spent a lot of time today thinking about how to deal with these awful mornings when everything seems to go wrong when I'm already super stressed about the time table to get out the door. And honestly I don't have any "fix-it" answers. Just begging for more patience and grace for myself. For not speaking the first thing that COMES TO MY MIND but taking just an extra moment to take a deep breath and really think about what I'm about to say.

And putting all cinnamon rolls so high that practically they are on the roof of the neighbor's house.

I don't want my children to remember me only as the mother I was this morning. So I'm going to try again. Tomorrow. With a little less in the expectation department and a lot more in the grace department.

Tomorrow's agenda: taking all 3 kids to the Pediatrician. alone. Sounds like a foul proof plan, huh?



Tuesday, September 9, 2014

Do We Celebrate Only "Inspirational" Individuals With Down Syndrome?

Last night I found myself at church, helping a large team wash/dry/organize the toys in all the nurseries. As someone who greatly benefits from the nurseries (and has a child in almost every one!), I thought it was good that I be there.

Driving there, I was regretting agreeing to it. I was exhausted from a very long day. My eyes were mad at me so I had to take out my contacts and put in my glasses and I hate having to go out in public wearing my glasses. But upon arrival and chatting with people-who-i-am-not-ultimately-responsible-for-how-they-turn-out-in-life, I discovered that this was the perfect way to spend my evening after a trying day down in the trenches of Motherhood.

Biting away my tendency to be overly sarcastic when I get super tired, I was pleased to meet some new, really lovely people.

In fact, one lady who I met blew me away with what was going on in her life right now. I started a casual conversation and it ended impacting me far beyond what I could even explain to her.

I was bent over a sheet of Duplos, trying to dry them, when she introduced herself to me. About two sentences in, she revealed that she is a caregiver of two adult women with special needs. About three sentences in, she revealed that one of these women is a 46 year old who has Down syndrome.

My first response to this was delight. "How cool!" She looked at me a bit quizzically, so I explained that I have a daughter who has Down syndrome. Normally when I tell people this, they get a light in their eyes as they no doubt imagine the little cutie in my life that I have been blessed with. But this caretaker who had been working with this woman for a month had a different look in her face. A look I couldn't understand.

So I probed, asked more questions, put my nosey little self right in her way until she told me more. (Yeah, my social skills go downhill fast when I get tired.)

She explained to me that she has to help this woman do very simple things- like take a shower; that she is completely nonverbal; that they are working on her not hitting everything with her arms…and banging her head, and that she gets extremely frustrated a lot and does a guttural sort of whine. Her face was full of love and tender caring as it was obvious that she was an amazing caregiver, but the words that she spoke could not be disguised. This was her reality right now.

I have to admit, hearing this put a ginormous knot into my throat. I have spent a lot of time imagining Addison as an adult, and when I got her diagnosis, this is the type of life that I feared. These are the types of descriptions that kept me awake at night, sobbing into my pillow and desperately pleading to God to let this prenatal diagnosis be wrong. It had to be wrong. That couldn't be my daughter. No. Please no. Just hearing this description last night brought all of those emotions and memories rushing back. Emotions and memories that haven't come to me in years now.

Because as Addison has introduced herself to us, fought for her life, worked like crazy to achieve so many things, and wormed her way into residing Princess at our house- I forgot about these descriptions that used to haunt me during those long nights of pregnancy. But every once in a while, this memory will poke its way back in with "She won't be a cute little girl forever!" or "She is becoming more and more different from her peers as she grows older" or "Look at that IEP! Can you imagine all the modifications she'll need in twenty years?"

And last night as I bent over Duplos, working like anything not to have my tears re wet all of the blocks that I just carefully dried, I felt like I just got punched in my stomach.

I think the disability community has done a great job sharing stories of individuals with Down syndrome who have broken through stereotypes and achieved great things. He owns his own restaurant! She sells paintings to the Prince! She writes books! He is a professional musician! He went to college! She is a dancer!

My newsfeed is constantly full of these stories, and they always put a smile on my face and give me such hope that Addison too will achieve great things with her life.

But what if she doesn't? Are the adults with Down syndrome who aren't breaking stereotypes worth less celebration? If their story isn't shared in a Facebook article that gets hundreds of thousands of likes and thousands of "AHHHHH this is amazing and so inspiring!" comments, does it make their story less amazing and inspiring? What if their achievement is not running a restaurant but mundane, day-to-day achievements that the rest of us could do since we were 5 and never thought a second about it being an actual achievement?

What if Addison gets to 46 and has to go move in with someone else because Aaron and I are too old to care for the constant care that she needs just to go through the day? Is she not an inspiration then?

I have been thinking a lot about this lately, because if we put "inspiration" only on the stories that seem "normal" and amazing, then I think we downplay the lives of those living a very different version of Down syndrome. I think for every one story of "inspiration" shared online, there are hundreds of individuals living with the same diagnosis, but a very different life path. Should we celebrate these people too?

Yes, yes, a million times yes.

The dream I have for my daughter is not that she breaks through some sort of invisible Down syndrome barrier and accomplishes "WOW SHE DID THAT???" things. The dream I have for my daughter is that she takes every day and lives it to the best of her ability. That she is happy. That she learns to love the Lord. That she finds her spot in life and lives the heck out of it. That she finds something that she loves to do (whether it be writing books or bagging groceries or greeting people at church or simply offering a comforting hand to hold) and seizes each day with a zest unique to her. That we can settle on some sort of communication (whether it be verbal, sign, or an app where all she has to do is push buttons) so that she can tell me her needs and wants, her wishes and her dreams.

BREAKING NEWS! Adult with Down syndrome went shopping with her mother today! They bought matching necklaces, and then the adult (named Addison) asked specifically for ice cream to go with her lunch. They walked all around the mall and didn't say much, but they held hands and seemed to really enjoy each other's company. Addison was asked for a quote on their day, and she said "Mommy didn't get me ice cream. But she promised it this weekend at Papa's House."

I think life with disability is more than the big stories. Do I appreciate and love these stories? Yes. But I think that there is more to life with disability than inspirational stories. I have learned and been inspired more from the day-to-day with Addison than I have learned in all of those articles combined. Simple, everyday tasks and actions combine to make her life worth more to me than I can even describe to you. Her achievements do not define her worth. Her achievements are hers to pick and choose. I am here only to celebrate with her no matter how big or small they turn out to be.

And if there comes a point in life when she needs to move on to live with another family like a typically developing adult would "move out" and my role as primary caretaker isn't my reality any more? I have a feeling that Miss Addison will just move her inspiration along with her.

Last night I chatted with this caregiver until she needed to go home to be with her new charge. I wished she had been there last night, because I can't wait to meet her. Will I feel awkward and worry about what to say? Probably. Will the conversation go completely different than the one I envision in my head? No doubt. But will it give me another picture into one of these "different paths" of Down syndrome? Yes. Knowledge can't hurt me. Knowledge only makes me aware of how to love, how to embrace life challenges, how to open my heart to those different from myself, how to put myself out there and unconditionally accept someone for the inspirational person they are. Not because of what they have DONE or ACCOMPLISHED but because of who they are.

Does that sound inspirational? You'll never guess who taught it to me…. #hint #addison #theonewholovesicecream

I can tell you this. A certain little girl will be celebrated around here. No matter what her career path looks like or how high her dreams send her. Because that's not what it's about. Not even a little bit.

Thursday, September 4, 2014

Feeling Buried

I have been quiet on here. This I know. But the truth is, I have felt a bit buried by life this week. By the time the pieces of each day were swept up, there was nothing left to give to the blog. So I posted some pics, a few statuses (is it stati if plural?) and scraped through the week with as much grace as I could muster (spoiler: not much).

What happened this week? A few things that have combined to create the perfect storm in my little world. 

A week ago, I got a call that Aaron was in the Emergency Room. The words scared me to death, and when he sheepishly told me he thought he had broken his foot as it got crushed between two machines, I panicked. Rushing the kids down to the ER with his insurance card and moral support, I was relieved to arrive and see him being discharged. A bruised foot. NOT broken. But since he was supposed to take it easy and keep the bruised foot elevated above his heart for over a week (he went back to work the next day)- every moment he is home, not only do I not get my usual back up and help- I have had 4 very needy children to care for.

The second thing that happened is that Addison went back to school. She LOVES school, and I am more than happy to schlep her to and from. But one problem- her new Tues, Th afternoons majorly interfere with the boys' nap time. By the time we get home for late naps after dropping her off, they finally fall asleep just in time for me to wake them to go get Addison. This means naps have been minimal all week because sleep breeds sleep and as soon as one nap gets skipped, they all somehow disappear. So constant dressing of 3 kids and running to and from school with no naps and no help…this week of adjusting has been super duper fun.

The third thing that happened is that Carter turned 3. Now, I don't know if this is the result of the other two things listed (see above) or if this is a HORRIBLE THREES thing, but he has decided to start pushing every.single.boundary. Where did the sweet boy from two weeks ago go who just conquered the terrible twos??? Fighting constant battles with him has made me question every part of motherhood in the most desperate of ways.

Also- potty training times two has increased in intensity. Carter has had very few accidents but needs lots of reminders still. Last Friday he came to me and said "Mommy, I pee pee on the kitchen floor." "Oh?" I asked. "Yes." he said,  "but it's okay. I took my underwear off first. It's still dry." Clearly, mission accomplished. But- he gets it. This makes me happy. Addison is doing awesome staying dry at school and mostly at home. She still has more accidents than Carter. Overall- we are doing great with both of them. I have yet to attempt night training though. I want to do a post on potty training, but I am terrified that as soon as I do- they will immediately stop having any success at all. I swear they read this in all their free, non-torturing-mommy time. 

What else has happened this week? Oh yes,  Eli stopped sleeping. Like at all. (most likely related to the lack of a nap thing.)

Quick to join the party, on Monday Addison's sleep study came back with the result of Sleep Apnea, after which she has had several nights of not sleeping unless she was almost upright in our bed, pushed away from me only when the baby joined the party for frequent night feedings while Daddy slept on the couch with his foot elevated to the sky. As I tried to grab minutes of sleep between elbows in my face, nursing a wiggly little boy, and limited room left in bed for my actual body- night time this week has felt just like a relaxing spa experience. All that was missing really was two slices of fresh cucumbers for my eyes.

So yeah, this week.

This morning I woke up and felt a bit like a train had run over me. Ten minutes later I was typing this status onto Facebook:

3 Year Old For Sale: He is super cute and loves to share. For example, he just might wake up super early, sneak into the kitchen, locate a Costco bag of M&Ms, climb into his sister's room, and lovingly share the bag. Quietly and fairly they will share. They will share like no one has shared before. They could win awards for their beautiful, beautiful sharing. Sitting cross legged across from each other on her pink bed- sharing, sharing, sharing with the quiet camaraderie of mice plundering the pantry during the still of the night. Their party of evil is discovered only when a bleary eyed Mommy stumbles by to get a cup of coffee after a rough night with baby. #ohmyword#icannotdotoday #sugarmakeseverythingworse #seriouslyforsale

(note: the m&ms were locked in the kitchen pantry when I went to bed the night before.)

We somehow made it through today. Did Addison go to school? No. Did everyone take awesomely long naps? Oh yes. Daddy came home early due to his sore foot, and Eli and I picked up Chinese food for dinner. We used to get Chinese a ton before kids (BK), but we haven't gotten it in a long time until tonight due to a huge need for mommy not to cook. Addison and Carter LOVED it with the dippy sauces and the many choices and the great flavors. Carter looks at me with his gorgeous eyes, bats his super long eyelashes, and says "Mommy, I love dinner. Food's good."

Does he say that when I slave over super amazing homemade dinners the other six nights of the week? Um, no. But he was being sweet and kind, so I will take it.

And to be honest- to every single one of these points I have a matching "thanks". That Aaron's foot wasn't broken, that Addison has such an amazing school to go to, that Eli loves to snuggle with me all night long, that Carter is such a big boy and talking to me so much, that they left just a few m&ms left for me (-; …so yeah… 

Just dropping in to say that we are still here. And will be back to say something so much more inspirational soon…hopefully. But meanwhile, a short lil' post helps put the week into perspective for me. It always somehow does.

In conclusion to this very disjointed post, 4 pictures. Proof that we are still all alive. Although some of us are kicking more than others. 
Here's to keeping feet away from machinery, long nights of luxurious sleep, little boys who are sweet and kind, a drama free Friday, and a little girl who loves school. (-;