Tuesday, December 30, 2014

In case you were wondering #MotherhoodUnexpected

Those of you who have following me for a while (or those of you who might check the "posts" column to the far right) may have noticed that my posts this year have been way down. I even took off an entire month during the summer. No posts-- silence.

Now we are nearing the last few days of this year of low posts, and I am only weeks away finally getting to share with you why.

Yes, it has been a busy year as Eli grew from newborn to emerging toddler, Addison began attending more school, and Carter turned from stubborn toddler to a little man-- but my silence has been about more than simply being busy in motherhood. (Those of you who know how addicted I am to writing probably already guessed this.)

To explain, I need to back up just a touch.

I have accepted Addison's diagnosis. I love her dearly. I love our little family just the way it is. But something still bothered me.

Seeing and hearing the following things:

"The scan revealed no abnormalities. God is good!"

"We prayed for him to be born healthy, and he was. God is so good to us!"

"The doctors thought something might be wrong, but they were wrong! Isn't God just so good?"

cut deep inside my heart, and I couldn't figure out why. 

I realized that the health of these other babies had absolutely nothing to do with me or my babies, but my mind jumped into a dangerous place before I could stop it. And it hurt. Did this mean that if the situation had been reversed, that God wasn't good? If the scan had abnormalities, would "God is so good to us!" still be tacked onto the announcement? And did this mean that when well-meaning people looked at Addison, did they honestly that God would have been MORE good if he had allowed her to be born without Down syndrome? If he had "cured" her? If our prayers had been answered in the way that we wanted?

I couldn't sort this out in my heart. The answers seemed simple, but my heart wouldn't accept them.

So I started on this crazy project called "Motherhood Unexpected" during the wee hours of 2014. I needed to write through this in a deeper way than a short blog post. I needed to dive into this hurt and write through it. I needed to find peace so that when I saw these announcements, I didn't feel hurt-- so that I could separate my emotions from this in a healthy way because I had a deeper understanding of God's goodness to me in giving me a child with Down syndrome. Not as a mistake, or a lesser choice-- as GOOD.

Some of you know that I spent two-and-a-half years working on a different novel. I have since chalked that novel up to my "practice hours" as a writer. This new novel is NOT the novel that I posted about a few years ago. This is a fresh outpouring from my heart.

This novel is a byproduct of studying countless craft books (after learning from mistakes made on my first novel) so that I could "work smarter not harder" with my limited writing time. 

This novel was my creative refuge during this past year of constant diaper changing. This novel was the place spiritual warfare for my heart as I struggled through these concepts for myself. 

This novel is all the things that I want to say as I stare into the fresh grief of a mother's eyes who just received a diagnosis for her child and who is honestly wondering where the goodness of God is now?

Why a novel? Why not nonfiction? I don't know about you, but I love drama. I LOVE a really good story that just won't let me go. So I wrote what I love.

On my fb/IG announcement, I said it was my first "published" novel. Does this mean I am working with a publisher? Well yes, but not in the traditional sense. I didn't write that to be misleading. I wrote that to differentiate this new novel from my old novel-- which I did not, and will not be publishing. This one will be published on Amazon, available both as an ebook (but is far different from the smaller ebooks that I have previously published) and paperback. I chose the nontraditional publishing route for many reasons (for a different post!), and I am so thankful that this one will be available in paperback as well. I know this will make it so much easier for some of you to read it.

Over the past year, I have had a critique team, an edit team, a review team, and a fabulous editor and PR person who have all been amazing as together we whittled my dream into a product worthy of your time. (Yes, the acknowledgements page is quite long. So many people made this book possible!)

I am so grateful to the Lord for grace and strength to finish this book. My heart is so much more at peace after being able to write through this. I needed this in ways that I can't even explain to you (after you read it, I think you will understand).

My work has been wrapped up for a few weeks now (after a very long ping-pong manuscript game with my awesome editor).  Now I am simply waiting to hear back from different teams as they are reading to help me polish off the last of the edges, and yet I haven't returned to regular posting because I feel emotionally drained. Writing through this exhausted me in a way I have never been before. Struggling anew with the characters, writing through important truths, finding acceptance, realizing what I was missing when it came to God's goodness-- this took everything from me.

I'm hoping to be back up and running as usual soon. This rest time has been important for me.

If all goes as planned-- Motherhood Unexpected will be available for sale (on Amazon) the week of January 15th. 

I am hoping that you will read it. It is my labor of love to you. I am hoping that you will share it with your friends. It delves with painful detail into the experience of Unexpected Motherhood (in regards to having a child with a disability) that I think can really help others understand the experience of becoming a special needs parent (at least one version of this experience).

And last but not least-- thank you. Thank you for your patience with me here as I stepped away from the blog this last year. Thank you for your encouragement and support. Thank you for giving me the courage to write Motherhood Unexpected. Yes, that is in the acknowledgments too. (-;

I hope you have a very Happy New Year! I can't wait to start blogging afresh.

To conclude, here is my most popular picture this year (for obvious reasons):





Sunday, December 14, 2014

The Christmas I Will Never Forget

I was not allowed to move. I remember lying on my side-- propped up on either side by large pillows. I was not allowed to eat. I remember hearing nurses nearby discuss ordering White Castle and eventually smelling the smells of greasy food and the rustling sounds of a takeout bag. I was in intense pain. I probably couldn't have moved even if I wanted to. And eating sounded exhausting.

I saw the twinkling of Christmas lights all around me. I heard soft strains of Christmas music punctuated by machines beeping loudly.

It was Christmas Eve. My back was severely broken. I was nine years old and all alone.

It wasn't my parents fault that a happy road trip to visit Grandma and Grandpa ended up breaking our family alongside a cold highway. It wasn't their fault that a stranger had a heart attack under a dark underpass, leaving his car parked in the middle of the road just begging to be hit. It wasn't their fault that because of how badly my back was broken I had to be taken via ambulance back to Chicago while my entire family stayed behind in a smaller hospital in Michigan.

I often think how hard it was for my mother to say goodbye to me. Her face was streaked in blood (she later needed facial reconstructive surgery), and I barely recognized the person who had always been there for me. And yet they wheeled me away from her after a tearful goodbye because in that moment she couldn't help me or go with me.

My older sister walked away from the crash to sit in a warm car nearby. It was so very, very cold, but I had refused the kind stranger's offer, holding myself up with my arms and fearing what would happen if I were to let go. I was told later that if I had tried to walk away from the car, I would have become paralyzed.

I remember the long ambulance drive, being taken away from my family while clutching the softest white teddy bear with a velvet red bow tie and smooth brown nose.

As the week progressed, I remember my Sunday School teacher driving two hours to sit next to my hospital bed to read me the Christmas story. I remember my violin teacher bringing some of her students to perform a show for me. I remember so many stuffed animals being thrown my way at one point I almost had to give up my bed for them to take over. I remember painful physical therapies in which I had to relearn to walk. I remember the back brace that I had to wear forever.

I'm a grown woman now. I'm 30 years old, and I am the mother. But yet every Christmas I get sad remembering how big the hole of loneliness was inside of me that night as I stared at the Christmas lights in painful isolation from my family. I was such a little girl, and yet that night I had to be strong. I didn't have any other choice.
I often think back to this Christmas that I will never forget and wonder what I'm supposed to learn from this experience that I still can't talk about. I can barely write about it. I know that it has been hard for me to trust after this. After falling asleep innocently in a car and waking in more pain than you can handle while staring at a completely shattered windshield and seeing your family covered in blood around  you-- it is hard to trust. I know that Christmas for me always holds some sadness no matter how much happiness surrounds me as I remember the day that easy trust was stolen from me.
When I think about my children and what Christmas experiences I want to give them, I always find myself so very happy when I can just be with them. Remembering what it's like to be separated from my parents during the "happiest" days of the year, I am so thankful every year when that is not my reality as a mother. Yes, we do presents, and yummy food is always a plus. Yes, we talk about the Christmas story, and Christmas carols are blasted 24/7 for far too long.

But to me, Christmas is successful when I can tuck my children into their beds safe and sound the night before. When they can wrap their arms around me and leave wet kisses on my ear. When we can watch a Christmas movie all leaning into each other on the couch in a giant pile of limbs (spoiler alert: tickling will ensue). When we can live our loud, messy lives together-- quiet moments blending into the unforgettable ones because of the intensity of joy that comes from simply being.
Lately I have been trying so hard to get to know my children better. It's so easy to just schlepp them around on my schedule, not taking their thoughts or opinions into consideration. But especially as Christmas approaches, I find a great need to really know them. Especially Addison-- who struggles to communicate well. I want to KNOW her. I want to be there for her. I want her to share her heart with me. Most days I feel that I am failing at this. And so as I wake up with every new morning, I try again. I try harder. I want my boys to feel heard. I want them to feel understood and supported even as they are so different than me. As we lie on the floor in front of our Christmas tree, I want us to discuss everything and nothing. As we make Christmas treats, I want them to have the gift of knowing that I am there for them. I want them to rest unfailingly in the security that I can offer as their mother.
And yet I know all too well that the security that I can offer them is minimal. So much is out of my control. Events that may separate us are always just a potential blink away. I have lived this. I know that I have to let my children go-- to (gulp) trust. I have to trust that while I can't control their safety or my ability to always be there for them, I have a loving Heavenly Father who can. A Father who knelt next to a hospital bed in that Children's Hospital so long ago-- providing strength to a little nine-year-old girl fighting back tears.
I don't feel the need to make Christmas BIGGER and BETTER, to plan elaborate schemes, or to give so many presents that it becomes difficult to be thankful for all of them. Mommy guilt and "I'm not doing enough!" worries don't control me at Christmas time.
I know that when I was nine-years-old, all I wanted for Christmas was to not be alone-- to not be in pain.

I am overwhelmingly thankful to be surrounded by my three beautiful children and handsome husband this Christmas season. I am grateful for their love to me. And I look forward to pouring out my love to them this season of celebration. No, my Christmas plans won't be up on Pinterest. But hopefully, these moments will be etched in my children's hearts. Etched and framed by the filter LOVE. I am thankful for the moments that we have to fill by simply being. Togetherness is a gift I will never take for granted.
Thank you to my friend Sarah Pinard for taking these pictures!

Monday, December 1, 2014

Vomiting Thankfulness

Thanksgiving this year was perfection. If by perfection, you pictured a cancelled trip, vomit, sores, a mouse, and- well, isn't that enough?

Last year Thanksgiving was so chaotic- Eli was days old. We were still wearing hospital bracelets when we stumbled into my in-laws Thanksgiving party. It was a daze. I felt bad that the kids didn't have the full "mommy is all there" Thanksgiving experience. I didn't even know where they were half of the meal. This year would be different- I promised myself. This year, Thanksgiving would be AWESOME.

So we planned. We planned a big trip to Michigan to see my parents and all my siblings. I was so excited. The cousins would play. We would sit around the table for hours with cups of coffee and talk with family the way you can only talk with family. I helped plan the big feast. I sent over recipes. I imagined us all bustling around Mother's kitchen- hating each other and yet loving each other at the same time (as only siblings can do).

Our bags were packed. The day of departure arrived. Except a big snowstorm arrived as well, so we had to push off departure by one day since this was the first big snowfall for Aaron's snow removal business. It's okay- we would leave Thanksgiving morning. No worries!

Thanksgiving dawned early. 1AM, I was awake. Worrying. In a good Christian way, of course (ahem.)

I fretted about the long trip and the weather and Aaron's safety working and if we would get left that day at all.

I fell back asleep. 4 AM. I woke up and worried some more. By this point I was so tired I then worried that I would be awake enough to drive the long trip.

I got back up around 7- dusted off a blog post I wrote a week earlier, drank a cup of coffee, and braved the day.

All was well, until 30 seconds later when I went to lift Addison out of her room. Strangest thing- her entire face was covered with red sores. Hmmm. So were her hands. And arms. And legs. Whoa- they were everywhere.

Long story short- we cancelled the trip to Michigan as she had a bad case of the very contagious Hand, Foot, and Mouth disease. Disappointed, I unpacked the bags while quickly figuring out how to rally the day for the kids.

I would still make Thanksgiving awesome!

I placed the pie dough in to chill, I put rolls on to rise, I whipped up a sweet potato casserole, I put  chicken in the crockpot (since the turkey was frozen solid and singing "let it go"), I planned out the rest of the meal, and found that a few busy hours in the kitchen revived The Plan.

Somewhere in there Aaron arrived home, exhausted from his night out. Somewhere in there I medicated Addison for the itching and placed cream on her sores. Somewhere in there I fed the baby and entertained Carter.

The kitchen was humming, delicious smells were filling the house, children were quietly playing- so much to be thankful for!

Addison colored our Thanksgiving tablecloth, and I taped the construction paper pumpkins and turkeys the kids had made earlier in the week on the wall. The serving area was ready.
(I took shockingly few pictures of our magical day)

I dished out steaming food onto plates for my family. I worked hard to pull together this last minute meal, and I was proud of how well it turned out. A full Thanksgiving feast with no chance to prep or plan. I did it! I even had a delicious chocolate chip pie made with my favorite flaky butter crust. The kids were going to love it! Time to make some memories!

I was taking the plates to the table when I heard it.

Vomiting.

In the hallway.

I ran to the hallway and there was Carter Henry, doubled over. The baby was crawling quickly to explore this fun new texture!

Carter spent Thanksgiving meal moaning on the couch with a bucket. Addison was scratching sores at the table. The baby was happily banging on the table for "MORE FOOD NOW!" before throwing most of it on the floor. Aaron looked ready to drop into the green bean casserole.

Just one big happy family.

We somehow stumbled through the meal. We then did baths- separate baths for every child- disinfecting after each one.

Aaron then immediately passed out (who can blame him- he was up all the night before.)

I got all the kids in bed, except Addison obviously wasn't feeling well because she wouldn't settle down.

I pulled her out to sit with me on the couch and watch a show. She loved this (although she spent the entire time crazily wriggling in an attempt to scratch while sitting still.) Finally around 9pm, she let me put her back in her room after more cream on her sores and more medicine.

Perfect. I was exhausted. It had been a long day, and I was ready for bed!

And then I heard it.

Vomiting

In Carter Henry's room.

I ran to him, helping him to the bathroom, changing clothes, sheets, and wiping up his room. I held him. I took his temperature. I wiped his brow with a cold cloth. I tucked him back in his bed and lay there with him, stroking his forehead and telling him that this couldn't have happened to a "nicer little boy."

When at last he started to settle, I snuck back to my bed. Oh blessed bed! How long it had been!

And then I heard it.

More vomiting.

In Carter Henry's room.

Same thing again. Helping him to the bathroom, changing clothes, sheets, and wiping up his room.

By the time I finally coaxed him to sleep, it was late. I was tired, cranky, and mad that Thanksgiving was considerably less than awesome.

Oh yeah, and somewhere in there before passing out- Aaron informed me that we have a mouse. Somewhere in the house. Taunting me. Tiptoeing around me. Terrorizing me. A.mouse.

Doing the math of the day, the sum of my additions did not end in Thankfulness. I wanted the magic! The warm fuzzy feelings! The happy family portrait!

And yet I was left with sick children, an exhausted husband, a mouse ridden house, an unappreciated meal, and- well- isn't that enough?

Sometimes it's hard to be thankful. It's hard to hold the pieces of perfection in your hands and be thankful for the brokeness.

And yet looking back now as our weekend spent together as a family- talking, cleaning, organizing, eating- we would never have gotten this weekend if we weren't all quarantined all together. We would have the busyness of the trip and rehearsals and church and nursery and- the list was endless. We wouldn't have been tearing apart and organizing and scrubbing down as a team if there wasn't Terrorist Mouse putting us on alert.

We have spent the last three days just being- together. The day after Thanksgiving, Carter was well and I could tell that Addison was noticeably more comfortable.
The baby took his first independent step. The boys started sharing their room (I GOT MY DINING ROOM BACK...well, as soon as the mouse is done with it.) We had long conversations over an extended pancake breakfast yesterday morning (there was nowhere to rush off and be.) The children wrestled with daddy. Tickles have been administered. Addison has been full of new words. We've gotten through a lot of chapters in our chapter reading book. We've had other meals together that were much better received by the children. Aaron has been so busy the last few months, I think this is the first chance the kids have really gotten to see him in a long time. The time together has been priceless. I've gotten my warm fuzzy, family portrait moments. They just weren't on the actual day of Thanksgiving.

But really- I would rather the warm fuzzy family portrait moments be scattered a little bit every day rather than only clumped together on one big day.

Because I am overwhelmingly thankful. I am thankful for it all- for the painful Thanksgivings and the ability to get through it as a family. To emerge the other side even more thankful for the boring, normal days.

Motherhood is hard, and sometimes it makes certain days seem impossibly difficult. But honestly I wouldn't trade it for the world. I am thankful for motherhood.

Thankfulness isn't about a beautifully decorated table and a turkey brined to perfection. Thankfulness is what holds you up on the days when everything falls apart. Thankfulness is the hand holding yours as you stumble through the valley. Thankfulness is the shoulder you can rest on when you just can't do it one more time.

And so, this Thanksgiving- I am thankful. Because even though the day was less than awesome- through it all I am reminded what really matters:

feeding your child a snack before you take his picture.

Well, that and other things.

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!

Monday, October 20, 2014

Addison's Surgery

I've tried to write this post no fewer than 4 times. Each time I close the tab, unable to finish. This may be partially due to sleep schedules being all wacky around here (also known as- my office hours.) Or it may have to do with how difficult it is to sum up the experience of this past week. It is behind me, and I am well on my way to blocking out the hard parts. My philosophy on being a surgery mom is- power through- just one step at a time- and then remember only what you want to remember while being overwhelmingly thankful that it is over.

For example- the bowling ball sized lump that appeared in my throat as I walked away from the operating room just having kissed my daughter's limp body goodbye before surgery- I am working to forget about that. Or the inconvenience of living on the Pediatric floor with a cranky patient along with an overly empathetic baby- I will forget about that too. The exhaustion from disrupted schedules and overly tired children- forget, forget. The drive home- wanting to check on her every thirty seconds to make sure she was still breathing- already forgotten.

What am I talking about? Last week Miss Addison had surgery. I have been updating my Instagram account and 2 Facebook pages best as I can- but I feel like the info is all scattered between the accounts. This is my attempt to bring all of the info into one place. Hopefully I will eventually finish this post and finally be able to publish it before I forget it all and move on.

Question I have gotten the most: What surgery did Addison have? She had her tonsils and adenoids removed.

Second question- why? Addison has some lingering pulmonary hypertension, so last month she had a sleep study to determine if the problem with her pressures was happening while she slept. We found out- yes. She has severe sleep apnea.

Third question- where did she have the surgery? Dartmouth. We chose to go 1 1/2 hours away for the surgery instead of having it done at our local hospital because we have transferred her ear and eye care there due to limited doctor options here in Vermont.
So many of you left notes saying that you were praying for her, and I am so thankful. It was obvious that we were surrounded by prayers and uplifted through the entire ordeal.

Addison, Eli, and I headed to Dartmouth last Wednesday morning. They called us on our way in asking if we could come in earlier, so when we got there my half hour of cushion "early" time meant nothing. We ran in and got things started right away which I was glad for because Addison hadn't been able to eat anything since midnight the night before- and her surgery started at 1pm. (Another thing to forget- the pre-surgery starvation while she so sweetly begged for "Toast" and "Cereal" "Pwease, Mommy" #theworst)
It worked out okay to have Eli with me. I was nervous about bringing him (as I posted on fb), but I really had no other choice as he is still nursing and I just couldn't leave him that far away with Daddy for an overnight. A really sweet nurse watched him in the surgery play room while I went back with Addison and held her hand while they put her to sleep. Another super sweet nurse helped entertain him after surgery when I was trying to comfort Addison and Eli decided to start crying too- after he stared at her, super concerned. They let me put a pack 'n play for him in Addison's overnight room.

(sorry for the grainy pic- but I couldn't get over how sweet he was with her. These two have a really special bond.)
So how did the surgery go? Perfectly.

Addison immediately ate two popsicles after surgery and begged me for real food for dinner once she was in her recovery room. She had no issues with getting liquids down or eating. She was quite cranky- but with Mama snuggled up in bed next to her stroking her hair (plus her pain meds), she settled down and finally fell asleep.

That first night of sleeping- I could already hear a HUGE difference in her nighttime breathing. Well, actually it was what I couldn't hear. There was no gasping or working for that next breath. (YAY!)
And then the next morning after she woke up, she started talking so much more clearly! As the day went on, she just kept talking and talking as if it was somehow easier for her now. The surgeon mentioned that there was some extra tonsil material on the back of her tongue that he took off as well. (okay don't tell me if this is totally crazy. It is what he said- I have no idea how common this is.)

No one told me that improved speech could be a by-product of this surgery. Aaron noticed it right away over the phone as well. We are super excited to see where this will continue to go as she keeps working.

She has been healing well, but not without discomfort and some bleeding from her nose (thankfully, it keeps stopping on its own.) We had an ER trip yesterday, and have just been keeping an eye on it all day today. Most likely this is just scars falling off as the healing commences.
All in all- I'm so glad that we made this trip. I'm even more glad that we are now home and well along in the healing process.

Of course the trip wasn't without some drama. The morning after the surgery, I woke up and could barely open my eyes they were so light sensitive. Tears were streaming down my cheeks, but I wasn't crying. My eyes were so irritated and in pain that I knew that I couldn't safely drive the kids home. I couldn't even focus on the surgeon when he came back in to check on Addison. My eyes had been actually bothering me for a few weeks, and I had an eye appointment with my eye doctor last week that I had to cancel because of the surgery. I thought I would be fine, but for some reason I woke up that morning and they were worse than ever.

I was alone with one baby and one preschooler fresh out of surgery. We were an hour and a half from home. Because of course.

Walking down the hallway to retrieve something from the car while pulling the wagon with Eli in it, I just simply prayed "God, please help my eyes to feel better so that I can get the kids home." I stopped, looked up with a squint, and noticed that I was standing in front of an eye clinic. What were the chances?

I didn't want to go inside because it was a highly specialized clinic, and I knew they wouldn't have any appointments, but I was pretty desperate. Long story short- their next appointment was in January EXCEPT for one appointment that morning at 11. I then called my insurance company to see how much this last minute specialty appointment was going to cost me. They said that they go doctor to doctor, not hospital to hospital to determine whether they cover or not. Turns out the one doctor who had the only opening before January- was in network for my insurance even though we were out of state. Um- wow.

This extra appointment added a bit more stress to the whole experience, but I was extremely thankful to get an exam with some special eye drops that immediately relieved my pain aaaand not to go broke doing it.

All that to say, I was able to drive us safely home last Thursday. I am now five days into a long sentence of glasses only, Addison is holding strong and suffering for the cause to NOT have her ice cream in a cone (I know, the injustice). Carter is readjusting to Mommy instead of his solo vacation at Grandma's house, and Eli is rolling with the punches (mostly figuratively but sometimes literally from his brother and sister).

We are ready for a boring week of baby loving. Boring has never seemed more amazing than after a surgery week. Boring. Bring it. #thankful

Monday, October 13, 2014

To The Mom Who Claimed Down Syndrome Abortion Is The Merciful Choice

Dear Mom who posted that aborting your baby with Down syndrome was the most merciful (or kindest) thing you could do for your baby,

I don't write open letters. And I don't comment on other people's business. Because it is THEIR business. Not mine.

And yet here I am. Writing you an open letter about your business. I am breaking two of my rules. Why?

This is certainly not to talk to you about your decision. It is done. Anything I say to heap guilt on you serves absolutely no purpose. I can tell that this was a difficult decision- one that you honestly felt was made out of love for your child. I respect you too much as a human being to bury you in the "what ifs" when you obviously have cried great tears over lost possibilities already.

This is also not to judge you. I am not your judge. Let me say that again. I am NOT your judge- or anybody's judge for that matter. It is not my job to tell if you if you have done something right or wrong. It is not my job to met out sentences or punishments. I am just a broken mother just like you- trying to make the best decisions possible with the information that I have been given.

So why am I writing you?

Because of what you said about wanting to remove the stigma from aborting babies with abnormalities. Because of your loud encouragement out into the world that others should not be afraid to choose the more "merciful" choice of ending the child's life NOW before suffering begins. Because of the comfortable way that you shared your very personal story with the world in a way to tell other women that they too should abort their babies with Down syndrome- that it is a "good choice." Because of your descriptions and bias against Down syndrome that you shared as though they were fact.

I have a problem with this.

Some other broken mother is going to read your post. She has just gotten a prenatal Down syndrome diagnosis. She is feeling lost and vulnerable. She will read your words and then perhaps give into the voice in her head that is whispering "You are right. This baby WILL ruin your family. This baby WILL lead a horrible life. You should definitely get rid of this baby and try again for a 'normal' one. It's the merciful thing to do. This baby would suffer too much!"

And just perhaps reading your post, feeling justified by your post, and letting you make the decision for her will cause her to miss out on one of the greatest gifts that she was sent in this world.

How do I know this? I was once that broken mother with those dark thoughts swirling in my head. I was the mother who cried great tears over how her family was going to be ruined because I was just told that my unborn baby would have Down syndrome. I was the mother who questioned what this would mean for my child. Would she suffer? Was it even possible for her to have a good life? I was the mother who also heard dire predictions from a genetics counselor about my daughter's life potential- in regards to health and survival.

And you know what? My little girl was born with a lot of health problems. She was so, so sick for a long time as her body tried to adjust to this world. I suppose by your definition, she was suffering. That I am a cruel mother for putting her through this.

But by my definition? I was giving her a chance at life. By my point of view? She wasn't suffering. She was fighting. My baby was born with a weak body, but with the strongest spirit I know. She wanted to live. And she showed us this every single day since then as she has continued to fight.

I am beyond thankful that I didn't have your post to hammer in the points that my head wouldn't let go already. I am so grateful that your story wasn't on my radar when I went through that impossible time.

Because having my daughter with Down syndrome has been the single best decision I have ever made in my life. Is our family ruined? No. It is a perfect 3 piece puzzle of two rambunctious boys and a sweet little girl. Is she suffering? Not even a little bit.
 
I believe that God perfectly created my daughter. You saw your son as a mistake. I believe that God has a plan for my life, our family's life, and equally as importantly- for my daughter's life. You decided that your plan was better than God's plan.

I hesitate even writing those words. And I want you to know that I say that with the most love and greatest amount of gentleness possible. Because once again- I am not your judge.

But really, where does your reasoning "I don't want my child to suffer therefore I end my child's life" end? What if your child is diagnosed with something unexpected in a few years? Will you hire a hit man? What if your child is mercilessly bullied in school? Do you wish there was a prenatal test for that so that you could spare your child that intense pain? What if your child is in a car accident and suffers horribly?

The way I see it- our job as mothers is not to spare our children pain or suffering. Life is full of pain and suffering for everyone. It is all around us because that is life. Our job as mothers is to help our children through the hard times. To give them a hand to hold- a smiling face- a gentle touch- a presence that they can count on- a kind word to help through bullying- a persistence to fight through difficulties alongside their every step- a cheerleader to encourage their fight- a love that lets them know that they are our world.

You can post that it was "merciful" to end your child's life before it even started. But I disagree. How about standing by your child through life no matter if life is 2 difficult hours or eighty happy years? Not giving up. Forging ahead. Fighting. Loving.

To all of those other broken mothers with a brand new diagnosis out there reading that post on "mercy aborting" your child with Down syndrome- just know. There are two sides to every story. Yes, by today's standards, you absolutely can abort your baby with Down syndrome and perhaps have people even pat you on the back for your selfless sacrifice. For eliminating "suffering." You can write a long essay about your personal journey- outlining your pain and show the world how you made the "best decision for your family even though it was hard."
Or you could really do the selfless thing and love. You can step out on faith, and give your baby a chance at the most basic of rights- life. You can evaluate what being a mother really means. Does it mean accepting and loving only babies that were in your plan- babies that will for sure be healthy?   Is healthy and smart all that matters in life? Really? Does it mean that the rules of motherhood are different if surprises show up in prenatal testing?
I think that motherhood is about acceptance. A delicate balance between accepting who your child is and pushing her to do her best, all the while loving unconditionally.

So if Down syndrome isn't "suffering"- what is it? What does it mean to motherhood?
After four and a half years, this is what I see Down syndrome as:

It is kisses before bedtime after a long day of adventure. It is holding my hand and then refusing to hold my hand and then holding my hand again as we walk to the car. It is sweet lips calling me "Mama". It is long hugs on the couch while we avoid folding laundry. It is eating family dinners while she asks for "more" and "ice cream." It is a little girl playing energetically with her brothers. A little girl begging to help "roll" out the pizza dough and pie crust. It is taking an exited girl to school who has begged for her aide all weekend. It's talking about her coloring sheet from school and asking her what she drew. It is messes in the kitchen when she and her brother dump a box of cereal from the pantry. It is picking up toys as a family and learning to run the broom and vacuum. It is settling down with a box of flashcards and quizzing herself. It is watching a show and asking for a snack. It is climbing out of her room and sneaking herself in with her baby brother. It is constant pleas for "Papa's House!" It is learning to draw a circle and yelling "I did it!" after using the potty. It is infectious giggles and face swallowing smiles.

Yes, there are tough times- just as there are hard times in parenting any child. But truly, having a child with Down syndrome isn't about the delays, dire predictions, or health problems. It is about the little moments of each day. Loving, enjoying, simply being- whether your moments are a lifetime or merely a few days.

And as a mother of two other children as well- I see very little difference between the 3 in this area. They are all different. They all require different things from me at different times. But the one thing that is constant- that I can count on- that holds motherhood close to my heart- is the love that they all require from me.
Loving my daughter even as I wait in the waiting room to hear if she survived another surgery. Loving my daughter as I pack our schedule full of therapy. Loving my daughter as I take her to school every day even when it is difficult to do with both boys. Loving my daughter when she works so hard to develop her vocabulary. Loving my daughter even when she is stubborn. Loving my daughter when she fights with her brothers. Loving my daughter through the thick and thin.

Because she is worth it. Her fight is worth it. Her life is worth it.
So to you-  mother who chose to end your child's "suffering" because he had Down syndrome- I am so sorry for your loss. Truly, truly I weep for you. I hope you find peace as you continuously struggle with the guilt that you posted about. I hope you find the love of a Savior who defined "mercy" far differently than you did. But I beg of you- please stop spreading "facts" about Down syndrome that aren't true. This is a scary enough subject to many without even more misinformation out there. I don't share my daughter with you to guilt you. I share her with you so you know why I am begging you to stop spreading this "mercy killing" philosophy. It is not mercy. It is not anything like mercy. Down syndrome does not equal suffering. Not at all.

And to those of you who are struggling with a new diagnosis.. Please consider the side of the story where life was chosen. Please consider the option of love. Please. 

Signed,
Another Broken Mother Who Chose To Give Her Daughter A Chance

p.s. it has been worth it. every single bit of it.

Thursday, October 9, 2014

Tips On Transitioning Your Child To Wear Glasses

Today's post is a bit different from my normal, but this is a topic I have wanted to post about for a long time.

One of the things that I get asked most about is Addison's glasses.

People ask what kind they are? (Miraflex)

And if they work well for her? (They do- as long as we get the back strap tightened enough and keep the lenses clean and free of scratches. Note: Get scratch protection. ALWAYS get scratch protection.)

But no doubt the question I get asked the most is - HOW DID YOU GET HER TO KEEP THEM ON? I exaggerated the all caps, but knowing the desperation that I felt the first time around with Addison, I think this is definitely an all caps situation.

So here's the deal. I am going to share our story with this. But to be perfectly honest, this is something that we have struggled with along the way (learning the hard way), so I have a few other parents stories to share as well. So if you are wanting advice and several different possibilities to try in this situation? You have come to the right place.

This is the type of advice I wished I could read when I was in the Ready To Pull My Hair Out I Can't Do This stage of glasses transition with Addison.

First, our story:

Addison initially got glasses at 18 months. And it went something like this: put glasses on her. Oh she's so cute! She took glasses off. Put glasses on her. Oh so cute! She took glasses off. Put glasses on her. Oh! She took glasses off. Put glasses on her. She took glasses off. etc etc etc (for ever on end)

After about six months of this and MANY different methods tried (including a behavioral therapist's help), I gave up. One year later, we discovered that her prescription was completely wrong.

Second go around of glasses for Addison: we started with a brand new eye doctor, a sedated eye exam (you can have this done while your child is being sedated for another procedure…we did her ears at the same time), and an uber cute pair of Miraflex black frames. She still wanted to take them off, but she would take them off after longer periods of time and we taught her to always put them in the same spot so they wouldn't get lost. To break her in, I would have her do an activity where she saw the benefit in them- such as watching a Signing Time show on the TV up on the wall soooo far away from her. But then to be honest what really helped us was going to school and her having someone else tell her to keep them on. Her aide and teacher are both truly fabulous. This was something that Addison learned MUCH better from constant backup from someone else (who also wears glasses) rather than just mean ol' mom who tried to force her to wear glasses that were completely wrong the first time around.

So my advice summed up:
1. Make sure the prescription is right
2. Make sure the glasses fit well and are scratch free
3. Give her incentive to want to wear them (AKA put them on to watch a show she loves)
4. Have backup and a one-on-one aide who plays bad cop with you on this.
5. Just keep putting them back on. Consistency is key.

Okay, I admit. That's not the most brilliant advice (thus why it has taken me so long to answer this question the hundreds of times it has been emailed to me.) Let's hear from some parents who figured this out so much faster than I did…

(by the way, you will read about varied experiences and thoughts about different brands. I love that glasses brand isn't a one size fits all situation- even when it comes to kids with Down syndrome.)

Here is Tara's story from Stoll Life:

Down syndrome or no, Olivia ran a pretty good chance of needing glasses because her dad and I are both cursed. So when Liv was a little more than a year old, we embarked on a journey for wee stylish specs. Difficult task. But we tried a couple different styles from Specs 4 Us (no doubt you’ve heard of this line designed specifically for our kids’ unique needs), and we picked an adorable pink pair. Choosing cutie glasses is one thing; keeping them on is quite another task. But we quickly discovered Invisiroos. Invisiroos is a glasses retainer that the farm girl in me can only describe as fishing line hooked to magnets. It loops and connects to each temple, then hooks in the back with the magnets. Simple? Yes. Invisible? Nearly. Durable? Yes. Effective? Absolutely. Invisiroos, for a reasonable price of about $10, has more than likely saved us from replacing Olivia’s glasses on several occasions. And I love that it’s not sporty, bulky, or obnoxious. Because nothing should distract from Liv’s cute frames!
(Deanna here again: I have since ordered Addison a set of these. Tara says she thinks they will work well on Miraflex, and Addison's back strap tends to get stretched out. A good fit is key. Can't wait for this to come in the mail!)

Olivia modeling her specs:

Here is Bronwyn's story from Needful Nybbles (super cute necklace line):


I first noticed Ryder’s eyes crossing while sitting across the dinner table. Mostly it happened when he was tired and it seemed to be just his right eye. We were a few months away from his annual eye exam so I decided to keep an eye on it. When we went in, sure enough, he needed glasses to correct the crossing. He got them on his fourth birthday. 

I had visions of this new, expensive, accessory being smashed into tiny pieces or thrown out the car window. But his doctor assured me that most kids wear the glasses as they can suddenly see better. Fortunately, this was the case with Ryder. As we left the office, Ryder was noticeably more alert and investigative of his surroundings. The big cheesy grin on his face spoke a thousand words. He had no problem wearing them.

Initially, we got him a Miraflex and a 'nice' backup pair by Converse. We ended up returning the Miraflex; with his shallow nose bridge and they with no bridge support, they were a poor fit. They sat so close to his eyes that they constantly smooshed his eyelashes and the strap in the back twisted the glasses off his face every time he turned his head. The replacement pair were also by Converse. 

Ryder does very well with priming and he takes great pride in being independent. Being a ham and the center of attention were qualities we took full advantage of. We constantly complimented him on his glasses. We heaped observations of how much he could see better with them. We taught him that they were HIS glasses and HE was in charge of them. We practiced putting them on and how to take them off and how to fold them up. We talked constantly on where the best places to put them down were: in plain sight on top of something. Tables, book shelves and counters were ideal spots.

He’s really good at it. He is very possessive about his glasses and doesn’t like people putting them on or taking them off. We take them to get tuned up every month or so as the joints get stretched out and screws loosen. The frames are replaced yearly as his prescription changes and that's about the life expectancy for frames for a 5 year old.

On his fifth birthday and next annual exam, he was able to follow the doctor's directions and give feedback so his prescription became much more accurate. And his world got even more clear. All in all, our journey with glasses has been quite successful and I am so proud of him.

Watch. Now I've jinxed myself.

Here is Belarmino and Mary Ann's story from t21Daddy2011 on IG:

Luke has only been wearing his glasses a few months now. I would say it's been about 4 months. Luke will be 3 on12/9/2014

Starting use of glasses for Luke at 2.5 years old was a little scary at first. Luke was already very much aware of his senses and was not very fond of wearing hats or masks.  He also didn't like for us to brush his hair, so we were worried that he would immediately remove the glasses.  Once we found out that he was near-sighted and with an astigmatism on his left eye while far-sighted on his right eye, we were hoping that he would welcome the glasses--being that he would see much better.  We found this to be true. We also got flexible MiraFlex glasses with a headband to hold the glasses snug around his head. That also helped. Cleaning of his glasses has also been important. We place his glasses back on while he drinks from his bottle so he doesn't pull them off at the onset. Once they are on, he tends to not grimace. We also remove them right before bed and place back on him the minute we change his diaper. Not waiting helps let him know that he HAS to wear them. There are days when he has allergies, and he rubs his eyes. Those days, we know we may find the glasses tossed on the floor. We simply place back on him without a fuss, realizing he has an excuse. 


And last but certainly not least, here is some advice from an unnamed source:

 Arm immobilizers. If your child is too young to understand that these glasses things can help them see better? (As Addison's eye doctor told me more than once- her world is only an arm's length away. She doesn't realize the benefit to seeing far away yet- this was at 18 months.) You can have them wear these for a couple days so that your child cannot physically remove their glasses while they get used to the new sensation on their face. Parents who have used this method say that all it takes is a couple of days and then the child never touches their glasses again. When you are talking about learning being negatively impacted because they aren't properly equipped with their glasses? This is a very practical option. I wish I had started with these! (after I got the right prescription…of course)

So there you have it. Some advice on how to help your child with Down syndrome learn to keep their glasses on. I am very thankful for these other parents sharing their stories. I have found that just with glasses brand, there is no one size fits all way to deal with kiddos with Down syndrome learning to wear glasses. I thought that by showing varied stories, one of them might be the one that helps you. (-; 

If you have advice on this subject- PLEASE leave it in the comment section. You never know who is out there right now in the Ready To Pull My Hair Out I Can't Do This glasses transition stage. For some kids this might be an easy transition. For others? (cough cough Addison) Goooood luck. (-; No seriously. Good luck.