Thursday, November 27, 2014

I am thankful for Down syndrome

I was asked a few weeks ago "What's something in your life that you are now thankful for, but at one time you thought it was the worst thing to ever happen to you?"

The thing that immediately came to mind was Down syndrome. But then as other people started listing different trials in response, I wondered- do I view Down syndrome as a trial? Is it a bad thing that we are grinning and bearing our way through? Is it a cancer that we pray for grace to have the strength for?

Am I thankful for Down syndrome because it is a fire that has worked to purify me and my family? Is it the flood that we are sustained through?

As I stare into the vibrant eyes of my daughter, I wonder- do I love her in spite of this "trial" of Down syndrome? Or is Down syndrome one of the reasons that I love her- not a trial at all?

As her short arms wrap themselves around me, I feel something settle in my heart that I know is right. Having her low muscle toned body wrap itself around me is love. Having Addison as my daughter brings me so much joy- so much happiness. But is that because of Addison? Or Down syndrome? Or are the two so tightly entwined that I can't differentiate between the two? Is Addison Down syndrome?

And if that is the case- is calling Down syndrome a trial- calling my daughter's very existence a trial? The cancer of our family?

When I first received her diagnosis- I would have said yes. That is what I thought was happening. That is why I was so horribly upset by the diagnosis. I knew absolutely nothing about Down syndrome- other than my prejudice and narrow minded view of those different than myself.

But then she was born. Then we got to know her. We learned something about Down syndrome- about what it is, and what it isn't. What is it? a part of our sweet little girl. What is it not? A trial, a cancer, something to endure.

So when I answer the question "What is something that you are thankful for now, but at one time you thought was the worst thing to ever happen to you?" I apply Down syndrome not because it is such an incredibly hard trial that is purifying our family. No, I answer "Down syndrome" because I have changed. My perception has changed. I have grown as a person and a mother. My mind has broadened to recognize disability not as a bad thing- simply as a different form of the same. A varied normal.  I have changed into someone who actually knows what Down syndrome is. I am no longer staring into a faceless diagnosis that seems dark and gloomy because it is off in the shadows. I am staring into the most beautiful face of my sweet daughter.

And so this Thanksgiving, I am thankful for Down syndrome.

I am thankful for tiny feet with extra space between her toes and even tinier hands with a crease across the palm.

I am thankful for a sweet voice that works so hard to tell me things.

I am thankful for a year of health problems that showed us how precious all life is.

I am thankful for a difficult prenatal diagnosis that broke my prejudices and made us a better, kinder family.

I am thankful for a head full of thin blonde hair that curls if it is humid outside.

I am thankful for the name Addison and the 4.5 years of incredible memories that name brings to mind.

I am thankful for the sister she is to her brothers.

I am thankful for almond-shaped, blue eyes that sparkle with mischief.

I am thankful for perfectly shaped calves that love to climb.

I am thankful for short arms that reach for my phone as soon as I look away. (So that she can look at all of the pictures of herself.)

I am thankful for rosy cheeks that tend to get chapped when it is cold out.

I am thankful for a big, little girl belly which means that leggings fit her better than jeans.

I am thankful for her care of the baby- feeding him, shutting the toilet when he gets near, putting hats on him, and giving him lots of hugs.

I am thankful for my mind being broadened to realize that difference is not bad. It is not something to be feared.

I am thankful for Down syndrome

I am thankful for Addison

Are they the same thing? Does it matter?

I find my heart overflowing with love, hope, and joy as I parent my little girl. Every part of her is perfection, down to her tiniest of ears and flat nose bridge. And so I am thankful for the beautiful gift that has been given to me to mother.

Happy Thanksgiving to all of you! May your day be full of thankful moments that turn into thankful memories.

(Those of you who don't follow me on Instagram or FB- I am also thankful to have my first novel coming out in January! More details here)




Tuesday, November 11, 2014

Down Syndrome Is Sometimes Hard

The other day, I let myself wonder- "Is it supposed to be this hard?"

You know, having 3 small kids. Is it harder because Addison has Down syndrome? Is the equation of our lives thrown off balance because as we add babies and watch them grow, the top end of our crew isn't growing at the same rate?
After I carry in the baby from the car- I carry Addison. Not because she can't walk the path to the house. She absolutely can. But she's just as likely to take a mad dash down to the road, and with the baby waiting in the house, and Carter skipping off to find his rake- I just can't risk it. So I scoop up her flexible self and feel her lean into me as I carry her to the safety of our house. My back feels a twinge, and I wonder how much longer I can keep this up. She is getting big.

After I change the baby's diaper- I change Addison's. She is making huge strides in potty training, and she does her best work at school. But she still has days where she has more accidents than not, so diapers are still a regular feature of her wardrobe, a few months shy of her 5th birthday.

Addison sits in the grocery cart with Carter which means that Eli doesn't have a seat in the Costco double cart even though he is very much ready for one. It is now ridiculous to put him in his infant seat in the back of the cart. He needs a seat! But Addison can't be trusted to walk. She will run off in .03 seconds. My entire life is built around keeping her safe, confined, and with me in spite of her recent desire to run free. So Eli remains stuffed in his carseat- like a sausage ready to burst on the heat of the grill while his sister keeps her seat. Eli has to wait until Carter can be trusted to walk full time for a seat to become available for him.

After I dress the baby- I dress Addison. She can pull shirts and pants on, but putting on a whole ensemble for school? If I let her dress herself we would be at least a hour late every day.  I don't have the luxury to sit around and wait for her as I might if she was my one and only. Toddlers fly around this house like dust in the sunlight. I gotta stay on my game, quickly moving from one child to the next, keeping everyone safe and alive.

These things and many others take up my day. And I wonder- is it supposed to be this hard? Is it so much harder because my almost 5 year old can't do many things for herself- let alone can't help me with the others? Would this be easier if she was typically developing?
October was Down syndrome awareness month, and while I appreciate the sentiment, sometimes I tire of hearing a month long shout to the heavens about the AWESOMENESS of Down syndrome. I have news for you- sometime's it's not awesome. What then? Do we still celebrate it?

I think it's a disservice to the world to talk only about the good, and not the hard.

It's a bit like when Christians post "The test results came back negative for Down syndrome. Praise the Lord! God is good!"

I would submit to you, that it is equally true to say "The test results came back positive for Down syndrome. Praise the Lord! God is good!"

Why are we so afraid to call out the hard for the good that it also is?

Why am I afraid to say- sometimes it is hard to have a child with Down syndrome. It can be a lot of work and frustrating at times.

If I say that out loud, if I whisper my "is it supposed to be this hard?" does it then give credence to those who are running the campaign to banish Down syndrome from the world via abortion? Those who are making the decision as to whether their child will suffer or have a good life- will it tip the scales toward the negative for them? Am I allowed to be honest or does it negate all of the awesome that I talk about- that IS of course there.

Something I am learning in motherhood, is to find beauty in the hard. And to find the beauty- you have to recognize that it is there.  (much like the beauty that is shining through this extremely dirty mirror)
I read an article this morning about a mother complaining that her typically developing 4 year old won't stop talking. "It's so hard!" she wailed "I never get one moment of peace!" My first thought was, "why is she complaining about something so awesome? Words all the time? Come to Mama!" She has what I wish I had with Addison right now, and yet she still thinks that parenting her child is impossibly difficult.

Parenting Carter is hard. This 3 year old phase assert-independence just might kill me. Parenting Eli is hard. He is determined to kill himself. I never get a moment's rest as he spends his days searching out and exploring. Someone might read that and think- I wish my 3 year old was spunky enough to be a wild child! I wish my 11 month old was that mobile!

No matter the details of our story, I think we can all agree that motherhood is hard.

So.....where is the beauty in the Down syndrome version of "hard"? How can a 4 year old who needs the care of a 2 year old be beautiful?

A few weeks ago while pondering this, I had an AH HA moment about motherhood.

The gift and reward of motherhood isn't what I GET from it all or how EASY it is made for me. No, my gift in motherhood is the ability to serve. Giving my all to my children. And no matter how exquisite the carving is on this stone- it will be hard.

"It is more blessed to give than to receive."- I feel like this just about sums up all of motherhood.

As I serve, as I give- there is so much beauty and satisfaction provided to me. Dying daily to my selfishness. Providing a loving home for my family to the detriment of my own comfort and rest. Gutting my heart and pouring it daily onto my family around me. This is their gift to me- allowing me to serve them. Allowing me to give. They are all so needy right now- perhaps it won't always be so. But will Addison allow me an extended period of giving? Will she provide me extra chances to serve, thus giving me prolonged beauty and satisfaction in my job as her mother?

As I think about Down syndrome and the extra service that Addison requires from me- I have seen first hand that this gives back extra reward. The ability to do so many things for her- is a gift to me. The service that she requires from me, pours me out daily in a way that is of huge reward to me as her mother.

This might seem ridiculous- counterintuitive. But so does the sentence "beauty in the hard."

But it is there. I promise you.

As she leans into me to be carried to safety from the car, I place a gentle kiss on her soft forehead and she smiles. It is a moment stolen and kept for just the two of us. A moment that we wouldn't get if she was walking in with Carter.

As I change her diaper, I think about how she is growing and changing into a big girl. I pray specifically for her safety- for her protection as she becomes a woman.

As she sits in the grocery cart instead of walking, she will often take her tiny feet and prop them up on my stomach as I am pushing the cart. She will reach her hands forward and try to grab onto me, giggling. Since she's in the cart, it is another moment for us- instead of having to give her over to all the distractions of the store.

As I dress her, we have a conservation about her outfit, and she helps put it on (she is more eager to help when she likes the outfit I have picked.) I get the chance to slide her shirt on over her smooth arms. I feel her strong legs resting on my lap as I slide her pants on. I remember how far she has come, and I remember to be thankful for the gift of life.

There is beauty all around me, even in the hard. Especially in the hard.

I am overwhelmingly thankful for it. Because without the hard? Down syndrome just becomes a one dimensional poster of AWESOMENESS instead of the real person in front of me with hopes and dreams, frustrations and pains, anger and joy. To claim only awesomeness turns Down syndrome into a campaign instead of celebrating the many faucets of the person.
Because show me ONE person who has no hard in his life? Just one.

It might look different with Down syndrome. But it is no less important to talk about- to feel- to power through.

Don't get me wrong- there are a lot of truly awesome things about Down syndrome. I am so thankful that it is a part of my life. But not just because of the awesome. I am thankful for the "not so awesome" stuff too. Because there is as much good there as there is in the other stuff. You just have to know what you're looking for.

So to answer my question- "Is it supposed to be this hard?" I don't know. Probably. But one thing I do know- I am thankful for the hard. Because it is showing me a new kind of beauty that I've never seen before.

Sunday, November 9, 2014

Pancake Morning

Sunday morning is pancake morning.

First, I slip out of bed to grab a cup of coffee. Steam rises from my mug as I sip. The children, sensing a force moving around them, start to stir. Eli sits up in bed and sleepily grins, with a small grunt which can only be interpreted as "put food in my belly- stat." I lift him free, his arms wrapping around my neck, his cheek pressed against mine, and his breath warming my ear. Then Addison is at her gate saying "Get out now, mommy. Get out! Toast! Cereal!" Still holding the baby, I let her out. "No toast. Today is pancake day!" which she then replies back with "pancake! church." because she knows that the two always pair together. Carter is then up on his gate shouting "ALL DONE MOMMY!" so I call to him that it is okay to leave his room. As he scrambles over, I thank him for waiting to leave his room until he had permission. He grins at me before scurrying away. His lopsided 3 year-old grin melts my heart. I set the baby down (who immediately dashes off to create trouble), and we get to work.

The next fifteen minutes can only be described as a flour-flying, egg-breaking circus. Throw ingredients into the bowl. Should we add oatmeal today? Applesauce? Extra baking powder to achieve a higher stack? All the while my children seem to multiply around me, holding onto my ankles like dead weights. (waiting ten minutes for food is hard! apparently) Then Carter always demands to stir- no matter that he is balanced precariously in an open drawer to reach up to the counter. Addison whines that "she wants a turn too." The batter is stirred by two eager helpers while I focus on keeping them away from the heating skillet.

Daddy arrives on the scene and takes over flipping and cooking while I chase down the baby- stopping to set some tunes on Pandora on the way by.

The plate stacks high with steaming pancakes as Addison sets the table. She takes the plates and forks to the Dining Room, and Carter then helps arrange them- one fork per plate. They almost get them all in the right spot.

Daddy carries the almost toppling tower of pancakes to the table. The toddlers climb up onto their chairs and patiently wait for their requests of "Cut pancake, Daddy. CUT!" to be carried out. The baby bangs his hands against the table.

I sit down with my now lukewarm cup of coffee after fetching milk cups for each child (and a big milk cup for Daddy.)

Pancakes are passed around, slightly drizzled with syrup over melted butter, cut to perfection. Within ten seconds, the entire table is coated in syrup. Carter focuses intently on eating. Addison chatters happily while taking hers at a much more leisurely pace. Eli gets tired of eating and decides to start throwing his pancake pieces on the floor. The floor instantly seems sticky too even though the baby didn't have any syrup on his pancakes.

Chaos ensues. Half of the talking is undecipherable. But as little bellies fill, my own pancakes slide down (calorie free, of course), and conversation still manages to happen between the adults- I look around at my sticky table and smile. This is my happy place. Hopelessly sticky. Fantastically messy. Gloriously awry. All of these words in perhaps another setting might not be positive in nature. But as they cross my mind over pancake breakfast- I equate them with perfection. The connection that we find over pancakes starts our week out with the warm fuzzy feeling of belonging. Family breakfast. Which always ends with tossing 3 sticky babies into a bubble bath to scrub down, towel dry, and dress in Sunday best.

Sunday morning is pancake morning. I think perhaps it is my favorite.

Thursday, November 6, 2014

Random Thursday...and winner announced

After I have a post get a lot of recognition, I always feel a bit blog shy for a while. After all- when a post is adored, sometimes I think that I can't possibly write anything better than that so why try? Also, there are new eyes peeking my way. New eyes that haven't followed for the past four years as I have so imperfectly tripped through this gig of being a special needs mom.

I know sometimes it may look like I have it all together. I know I might appear at times to be a spectacular special needs mom, but sometimes I shake my head reading these comments, wondering how I could have possibly portrayed myself so that people would actually think that.

Sometimes I want to reply to

"You are such an awesome mom!"

with

"You should know that I have an entire basket of odd socks in the corner of my living room. An entire basket. I paw through it each morning, feeling lucky if I can find 3 pairs of tiny socks that at least coordinate."

Or to

"You are such an inspiration! Addison is so lucky to have you as her mom!"

with

"You should know that I showed up to one of her IEP meetings once with my shirt covered in her urine. It took me half of the meeting to realize it."

Rest assured- special needs kids do not just happen to "special" moms. I promise you- I fail at this more than I succeed. I ask dumb questions at school pick up, and yesterday Eli crawled around in broken glass (see fb post). But one thing I have learned about being a special needs mom- you don't have to be perfect or extraordinary. You just have to show up. You don't have to run marathons. You just have to put one foot in front of the other. You don't have to WIN THE WORLD. You just have to find peace in your tiny corner of it.

I am proof of this. Ask anyone who knows me- there is nothing special about me. In fact, sometimes people might scratch their heads and wonder if the stork perhaps delivered these 3 beautiful babies to the wrong home? But we show up. We love. We survive the hard moments, celebrate the good, and find joy in all the inbetween ones. And somewhere in there? We find clean socks- barely.

So if you are ever tempted to put me on a pedestal because I have a special needs child? Just remember- I am human. I am doing the same thing that thousands of other moms are doing. There is nothing special about me. I find this my safe spot to share, and I love all of you for listening. 

Also- I am sleep deprived 99% of the time, and I tend to be ridiculously hard on myself. I cannot believe that Eli is about to turn 1, and that Addison is almost 5 (I have definitely felt every single day of Carter's 3 years.) I just had a cookie for breakfast, and I have absolutely no plans to work out today. The house is a bit trashed, but we will probably head out for an adventure this morning instead of cleaning....after another cookie. I love my children, but lately I have been thinking wistfully about the time before them when I had freedom of movement- and the ability to earn a paycheck without worrying about childcare. My favorite part of the day is when the children get up in the morning and wrap sweet arms around my neck- clinging to me. My second favorite part of the day is when I put the children to bed and they wrap sweet arms around my neck- clinging to me. None of this makes me a horrible mother. Or an awesome one. Just an average, normal lady doing the best she can.

I don't post as many random posts as I used to- feeling that if I'm going to put in the time, I'm going to polish it up with a THEME and make it STAGE WORTHY before publishing. 

But here you go. Today's is a random post. (I had to announce the winner...and had no theme other than WINNER ANNOUNCED.)

So let's talk random.

Halloween Costumes:
Grandma made the awesome hats and snow and Mommy made the tractor (team effort!) The point of this costume was 2 fold. 1. To be undeniably cute. 2. To support Daddy in his snowblowing ventures (a relatively new winter part of this business). A third point snuck in there as well 3. To get a TON of candy. (-; Mission accomplished.
I really thought Addison would love to ride (again), but she was quite upset that she wasn't walking with Carter. I think I underestimated her a bit. (Although to be fair, if I had asked her to walk, she probably would have wanted to get back in the wagon after 3 houses. We walked a long way!) Oh and no- Carter did not wear the tractor the whole time. It was light, but bulky- so Papa ended up carrying it while the tractor driver walked "next" to it. Eh, at least we got cute pictures.

Another random tidbit...trying to get a good Christmasy picture for this year's calendar gifts:
 easier said than done...


Also...
I am extremely thankful for triple wagons. Without which I (and my tiny circus) would never leave the house....

And last (but certainly not least) random thing today...the winner of the doll is....

Mandy

I would give this doll to my daughters -Phoebe (who has DS) and her big sis Rowan. I love how the proceeds from the sale of this doll go to Down syndrome charities. I hadn't heard of this doll- thanks for sharing!
Congratulations on your new doll! Email me at dsmith0806 (at) gmail (dot) com to claim your prize!

Thank you everyone for entering. I loved reading about all of your lives and who you would give the doll to. I wish we could share further over a cup of coffee...and more cookies (-;

So there you go. Random Thursday. Hope you have a good one!