‘This belongs to’ … realizing who our special needs kids really belong to in a hospital cafeteria

this belongs to

‘This belongs to’ … realizing who our special needs kids really belong to in a hospital cafeteria

I sit in the hospital cafeteria, a half eaten chicken sandwich and a bottle of water is positioned in front of me on the plastic tray that reminds me of grade school. My foot taps. A loud metronome sounds in my head. Tick, tick, tick, tick.

I scoop up another bite of chocolate pudding with whipped cream, an indulgence saved in my world for hospital cafeterias.

I look around for other parents. You can tell who they are, either by exhausted expressions, or by the white ‘this belongs to’ bag that carries their child’s things during surgery.

In the last seven years since I became a special needs mom, I’ve been in the hospital cafeteria countless times while waiting for one of my two daughters with Down syndrome.

Today Polly has two quick outpatient surgeries. Hopefully, it’s an in and out day; a tooth capped, a tooth pulled, and muck cleared out from the tear ducts in her eyes.

But there have been times when I’ve sat here for a reprieve during a much longer stay in the hospital; a brain surgery, or a scary test, or for recovery from a catastrophic stroke.

I put down my chocolate pudding spoon, and place my trembling hand on the cool white ‘this belongs to’ bag, the only thing left of my child; her scuffed up gym shoes, a pair of jeans, a plain pink shirt, and wait for a page that she is out of surgery, and that I can go to her, take her in my arms, and hold back her hair if she vomits from the anesthesia.

This isn’t the stuff parents dream of when we have children. No one thinks their child will be in need of life saving surgery. We all assume an extra chromosome or another special need will happen to someone else. But not to us.

But this is the stuff of life. Kids get sick. Kids are born with special needs. They fall off the monkey bars at school and break their arms. They wake up in the middle of the night with a tightening in the chest, or a stiff neck, or a fever of one hundred and four. They stop for pancakes with their mom and sister one bright Sunday morning, and have a stroke right there in the middle of the restaurant.

This belongs to …

And so we parents find ourselves sitting listlessly in hospital cafeterias, spooning chocolate pudding to our lips for comfort, gripping the white hospital bag of our child’s belongings, and wondering why in the hell God would allow such a thing to happen to them.

And to us.

I pat the ‘this belongs to’ bag like it is a loyal dog curled up next to me. After Polly gets out of surgery and recovers, God willing, I will take her things from the bag and put them back on her; her jeans, her pink shirt, her scuffed gym shoes. She’ll once again be mine, belonging to me, and we will toss the white bag in the trash and be on our way.

But the ‘this belongs to me’ bag will stay with me. It’s a reminder that my child isn’t actually mine, but God’s. Placed in my charge, at least for a little while, I am her white plastic bag that holds the precious treasure known as her life.

I will remember that there is someone who loves her too, loves her more, and has a good plan for her. And for me.

In the midst of crazy scary uncertainty in life, when kids get sick, when we parents find ourselves in waiting rooms or hospital cafeterias, I’ve come to learn that God is fine with our kicking and screaming, and fiery questions … “Why her? Why us?” We don’t have to be polite with God, or try to make it seem like our faith makes us strong and ready for these trials. No, we can be honest. We can be raw.

If we are able to get quiet enough to listen, and are patient enough to wait, he will answer.

And this is what he’ll say.

“This belongs to me.”

Why a wave matters, thoughts on parenting a nonverbal child

nonverbal

Why a wave matters, thoughts on parenting a nonverbal child

“I had a dream last night that Evangeline started talking,” Sergei tells me as we tag team through our early morning duties to get our four children off to school.

I smile at the thought … we both seem to dream about Evie speaking to us at different times … and busy myself making peanut butter sandwiches for the girls’ lunches.

About our girl

Evangeline is six. We adopted her from Ukraine when she was two and a half years old. She has Down syndrome like her older sister Polly.

And so far, she is nonverbal.

For a while after Evangeline came home, I thought it would just take time and therapy for her to start speaking. I assumed that nonverbal meant  Evangeline would not be able to communicate with us until she could use words.

It has been a struggle. Evie doesn’t initiate closeness. She tends to stay to herself. She watches the world with her cool blue eyes and I wonder, “oh baby girl, what are you thinking?”

I ache to know.

I dream of her whispering the desires of her heart in my ear.

But that is not happening today.

So I work at learning the language she does speak.

When Polly hugs her too hard and Evie cries, I teach Polly. “That’s Evie’s ‘no.’ She doesn’t like you hugging so hard. Be gentle.” When Evie takes my hand and leads me to the bathroom, I know she wants to take a bath. When she brings us her pecs (pictures exchange communication system) picture of a pudding, I happily give her a snack.

I don’t take these things for granted. They are huge milestones for our girl, and I am thankful her world is opening up a bit more. I am thankful she is starting to understand that she has a voice. I’m thankful she is starting to believe she can trust us with it.

But my mother’s heart craves more. I want to hear Evangeline’s actual, audible voice making words. I want to talk to her. I get angry on her behalf, because she should have more in life, and I get sad … because, honestly, it is hard work for both of us to try to speak the same nonverbal language.

The school bus is almost here.

I zip up Evie’s fuschia spring coat with yellow and light pink swirls on it, smooth her corn silk hair from her forehead, and look my heart-shaped faced daughter in the eye. She allows me a gaze, a prize for the day as eye contact is hit and miss.

“We love you sweet girl. Have a great day at school.” The yellow school bus pulls up to the house, I clap my hands twice, signing ‘school,’ and watch my husband gently lift our girl up into his arms to take her outside.

I sigh, look around, realize there’s still much to be done to get the other girls ready for their day, and call to Polly to get dressed.

“Hey, guess what?” Sergei says to me as he comes back inside, closing the front door behind him.

“Before Evie got on the bus, she turned around and waved at me.”

My husband’s words stop me. Tears well up in my eyes.

“Like a real, intentional wave?”

“Yes, a real, intentional wave.”

“As in, ‘bye?”

“Yes, as in ‘bye.”

We look at one another for a second as our other children buzz around us.

Sergei smiles.

I smile.

Who knew that an intentional wave could make a mother cry?

I’ll tell you who. A mother to a child who is nonverbal.

Our daughter Evangeline waved ‘bye bye’ to her father before getting on the bus.

That matters …

It matters so much.

And I realize. She is speaking … we just have to slow down enough to hear her.

Polly’s birthday, thoughts on celebrating with Down syndrome

Polly’s birthday, thoughts on celebrating with Down syndrome

polly and kendall

Her first birthday and my struggle with Down syndrome

My daughter Polly’s first birthday was a great celebration. We had cake, and family, and friends, and ice cream, and pizza, and happiness. Lots of happiness.

But we also had uncertainty, a bit of sadness, insecurity, uneasiness.

Polly was born with Down syndrome, and on her first birthday, I still battled fear every day. What would life be like for my daughter? Would she do well in this world? Would she have friends? Would our lives be normal? I struggled. Oh, how I struggled because I loved my daughter more than life, but I wasn’t sure if the world would love her.

Polly’s sweet cousin Kendall sat next to her at our family party that day. Just six months older than Polly, Kendall’s development and ability were undeniable. I watched both girls grab handfuls of cake and smash it into their faces, and wondered, “what will Polly’s life be like compared to Kendall’s?”

Her seventh birthday and my thoughts about Down syndrome

Fast forward seven years. We prepare for Polly’s seventh birthday party, the first ‘school friend’ party we’ve thrown for our sweet girl. All the girls in Polly’s first-grade typical classroom receive an invitation. We plan snacks and land on the theme of ‘arts and crafts.’

RSVPs roll in. There will be a full house.

And so we prepare …
cupcakes

streamers

 popcorn

The day of the party, Polly can barely contain her excitement as she waits for her friends to arrive.

birthday girl

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And as an added, extra special treat, it works out that her cousin Kendall is visiting from California and gets to be a part of the party!

cousins

Girls arrive. They craft. They eat.

friends

They sing “Happy Birthday.” They watch my little girl open homemade cards that say things like, “Dear Polly, I’m glad you are my friend.” They ooh and ahh over opened gifts.

Polly’s friends pile around her. They celebrate her. Happy to be at a party, happy to have friends. Just like my girl. There is no difference. My heart is full. Polly’s smile is a mile wide.

friendscouch

 What I’ve learned about Down syndrome

That first year, and time and again here and there through the years, I’ve wasted space in my head worrying about Down syndrome.

I should have, instead, just enjoyed my daughter. I should have known that others; both kids and adults would see so much more than just Down syndrome when they look at Polly. They’d see love, and joy, and life. And of course, they would want to be her friend.

And you know what? Polly and Kendall’s lives are similar. They both have loving families. They both participate in extra-curricular activities, they love dolls, and Strawberry Shortcake, and basketball.

polly happy

And they both have friends.

thanks for coming

 

Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

Tomorrow’s a ‘no’ day, a needed reminder in parenting kids with special needs

no day

“Have a great day, Polly! And remember, make it a ‘YES’ day!”

She stopped in her tracks and pivoted to face me.

“Ok, Mom, but tomorrow is going to be a ‘no’ day.”

My husband and I tried to hold it together, as we do daily with the one liners easily crafted by our funny little girl.

Once I shut the door behind my little family, wiped the tears of laughter from my cheeks, and relaxed my tightened stomach muscles from my gaiety, I started to think deeper about Polly’s words.

Tomorrow’s a ‘no’ day.

What an unknown concept to parents of kids with special needs. Saying no. Having a ‘no’ day.

Read the rest of this post at www.notalone.org.

She grows, As Polly turns seven years old, her growth, and mine, astound me

she grows outside

She grows, As Polly turns seven years old, her growth, and mine, astound me

It’s a sunny Sunday afternoon. Evangeline swings in the adaptive swing while her Papa dutifully pushes her back and forth. Elaina and Zoya, with adult-like bodies but childlike hearts, swoop and slide on the monkey bars. I shadow Polly to make sure she doesn’t get hurt, to help her if she asks.

An elevated Chicago train rumbles above us along the perimeter of the park. I turn to watch it push forward for a moment. The sun blinds my eyes. I look down at my shoes.

My head raises and I glance around for Polly, who has seized the opportunity to rush to another activity while her Mom is momentarily preoccupied.

“Polly, where are you?” I call.

“Over here, Mom. I’m here.”

“Where?”

I turn around where I stand. I don’t see her.

“Here.”

Her voice calls from above. I notice the knotted rope ladder to my right and catch sight of my daughter’s blue and green Velcro tennis shoes command step after step as she scurries up.

I had no idea she could climb like that, sure-footed, easily, without any help, on weaving ropes that bend and rock as she moves.

Polly turns seven this Friday.

Her diagnosis of Down syndrome picked up my world and threw it against a brick wall. For a long time I stayed like that; drippy, unglued, apart, so very sad about the presence of an extra chromosome in my child, and so very, very frightened of the future.

I was as weak as a mom as Polly was as a new baby. Her infant body resembled a bag of brown sugar. For months, her arms and legs flopped around. She was unable to hold her head up for a long time.

As was I.

But I am happy to report that we both have grown important muscles over the last seven years. Her muscles to stand, and then run, and jump, and climb a knotted rope ladder. And me, muscles to love without fear, to trust God’s perfect plan, to advocate for my daughter and beyond all else, enjoy the crap out of her.

Her growth astounds me. Polly works hard to acquire new skills. She makes friends with anyone who comes into her sight. She cracks one liners, causing our whole family to burst our britches with laughter, and she continues to teach me about the important things in life.

I am incredibly blessed to be her mother. There have been hard times, and there will be more, but I plan to follow the footsteps of my daughter. To take a step when it is difficult, to work until I am sure-footed and able to chase after whatever God has put in front of me to do that day, and to make sure there is always enough time to see my children, myself, and the life I have been given, through the eyes of God.

Leading the way, thoughts about sisterhood and Down syndrome

lead the way

(I’m on vacation this week … So here’s a post from the archives. Enjoy!)

Leading the way, thoughts about sisterhood and Down syndrome

When Polly was born and we learned of her diagnosis of Down syndrome, I grieved the child I expected. I didn’t know much about Down syndrome. My mind quickly flipped to un-flattering images of a child sitting alone at recess, or a mother in her golden years walking slowly through the aisles of Wal-Mart so that her adult daughter, still a child, could keep up. Sadly, it took me a while to let my guard down and fall in love with Polly.

Polly’s older sisters led the way. From the moment they met her, they dripped with love for her. They loved everything about her: “Oh, look at her pudgy little hands! Look at her wispy brown hair. Isn’t she just the cutest little thing ever?” When we later explained to them that Polly had Down syndrome, and that she would need a little extra help doing things, they didn’t bat an eye. “I guess it’s good that God gave her older sisters, huh, mom?” Elaina said.

Indeed.

Three years ago, when Evangeline joined our family, Elaina and Zoya took the lead once again.

Elaina stayed with me for seven weeks in Ukraine until the adoption was finalized. She spent long, Kiev days tickling Evie and helping me take her outside for walks as we waited for the paperwork for the adoption to go through. Once again, I struggled, and my kids led the way.

Snapshot from today:

A toy came home in Polly’s backpack today from Kindergarten. It’s one of those birthday favors. You blow on it and it flings out in front of you. What fun! Polly figured it out right away, and I was thrilled that it wasn’t the one with sound.

A little while later while I was finishing up an email on the computer, I saw Polly bring her new toy into the kitchen. Evie was sitting up on top of the table (one of her new favorite perches in the house), kicking her feet off the edge.

“Look, Evie,” Polly said, moving carefully, climbing up on the bench and then sitting down next to her on the table. “Look, Evie, it blows out,” she said, and then promptly gave a demonstration. I fought the urge to intervene. Evangeline is easily spooked and she is not Polly’s biggest fan. Most people love a happy, in your face five-year-old but Evangeline could do without. But I took a breath and waited to see what happened.

“You see that, Evie. It’s red. It’s pretty. It’s fun.” Polly blew on her toy again. “You like that, Evie. Do you?”

And the most amazing thing happened. Instead of reaching out and grabbing the toy. Instead of crying. Instead of getting the heck out of dodge (read: getting down off the table and away from Polly a.s.a.p.) Evie laughed.

She laughed.

Polly blew her toy again. Evie kept laughing. And for about five minutes they seemed like they were, I don’t know what’s the word?, playing together.

It was magical.

When Polly was born, I worried that she would feel alone but I learned quickly that her sisters would never let that happen. When Evangeline joined our family, I worried, I still worry, that we won’t be able to reach her. Some days she is very far into her own world. And then today, Polly initiated a game with Evie and Evie, just a little, for a few moments, let her in. Polly had Elaina and Zoya to prod her along in her development, and now she is starting to lead the way for Evie.

The magic is now gone. Polly broke her toy because she kept twisting the blow out part. Evie stole all of Polly’s pretzels out of her favorite ice-cream bowl. Polly is running circles around the house yelling, “hey, Evie, leave my snack alone” and Evangeline has climbed off the table. As I type she is eating pretzel bits off my, um, super clean kitchen floor.

But I don’t care. I’ll take the five magical moments when I saw Polly work her sister mojo on Evie.

Sisters are the best therapists in the world.

World Down Syndrome Day 2013, RAISE YOUR FLAG

World Down Syndrome Day 2013, RAISE YOUR FLAG

AUTHOR

Today is World Down Syndrome Day 2013 …

And I have no idea what to write, let alone the message I want communicated in the words I type.

Why is this?

I’ve been advocating for my daughters with Down syndrome for seven years. Even in the beginning, after my daughter Polly was born, as I grieved the child I expected (mostly out of ignorance), I still picked up whatever flag I could and waved it vigorously for Down syndrome.

That first year, when my eyes were still rimmed red from crying, and my hands shook a bit when I talked because I couldn’t get this feeling of dread out of the pit of my stomach when I considered my daughter’s life and the effects of that extra chromosome, I still wrote a letter to the editor of a local newspaper about World Down Syndrome Awareness Day. I still joined my voice to countless others fighting to help the world see their children as they should: children. Normal children who may need a little extra help in certain areas, but who  have so much to offer, who are productive members of society if only those around them would take the time, and provide opportunities for them to display it.

I guess this year I’m just tired of convincing the world of my children’s worth.

As a special needs mom, my life is filled with advocacy, and fighting, and working to help my girls reach their God-given potential, and making sure they get fair shakes at life.

I’m tired.

My friend wrote this great post the other day about how Down syndrome must lead to action. To paraphrase (and you really should go read her post, because it puts much, much better), it is nice when kids with Down syndrome are acknowledged, and even appreciated. But what they need, what WE as their families need, is for society as a whole to pick up the flag of advocacy.

Yes.

If you are reading this post today on World Down Syndrome Day 2013, and you like, or love, or appreciate Polly and Evangeline, then I ask you to raise your flag. Appreciate my girls. Love my girls. And please, stand up and fight for my girls.

As my friend so eloquently put: 

I ask you to act on what you now know, what you are aware of. The next time you are in your child’s classroom, look around. Do you see any children with Down syndrome or other Neuro or physical differences there? No? Ask the teacher, ask the principal, “Where are they? Why are they not with my kids?” Tell them that you believe in the equality of all people, and the rights of children like mine to be educated in regular classrooms alongside their peers (your children).

What I love about my two daughters with Down syndrome, and what I want others to know about them is simple:

They are normal little girls, made of the stuff other little girls have, flesh, blood, love, laughter, selfishness, wonder, mischief, curiosity, impatience … When Polly was born I ignorantly assumed she would not be a typical little girl. I made the mistake of thinking she would not be the little girl I wanted. But her presence in my life and the God-ordained appearance of her sister Evangeline through international adoption from Ukraine daily eradicates my pre-conceived notions about individuals with disabilities. Sure, my girls have special needs. But they also have what I call “special powers,” the ability to love without limits, to smile at a new day without drudgery, and to teach this Mama over and over what really matters in life.

On World Down syndrome Day, I ask you to remember that regardless of a child’s ability or disability, she is a child first, and should be empowered and celebrated all the days of her life. If forced to point out differences about my girls, well then, they have ample supply of the good parts of the human heart, gifts from God himself to reveal his glory: joy, love, kindness, courage, endurance. Pay attention to my daughters, and to what they have to offer, because these are the things that most of us find wanting in ourselves.

freeimage-14155946

Want to read more about WORLD DOWN SYNDROME DAY? Here’s more:

Mothers share truths learned because of Down syndrome at NotAlone.com

3 for 21: A Bite Sized Blog Hop for Down syndrome and Change

Amy Julia Becker’s Down syndrome around the world series at Thin Places

International Down Syndrome Coalition: parents who blog about Down syndrome

In My Arms, the privilege of holding my daughter with Down syndrome

© Amdezigns | Dreamstime Stock Photos & Stock Free Images

© Amdezigns | Dreamstime Stock Photos & Stock Free Images

In My Arms

“Mom!” Polly yells out in her sleep. Her body thrashes to and fro on our Queen sized bed. Her legs kick the covers off. Sweat glistens her forehead.

Her father and two older sisters went out for the night. Her little sister, having been all tuckered out from school and therapy had been asleep for an hour. I bedded Polly in next to me, thinking that my husband would move her when he gets home, and that her slight of breath, up and down, methodical, musical, may inspire me as I grab a few last minutes in the day to write in the quiet house with our fuzzy white dog at my feet.

“Honey, what’s wrong. Tell Mama what’s wrong.”

She doesn’t respond but continues to fuss and squirm on the bed.

“Shh, there there,” I attempt to settle her back into whatever part of her dream cycle she momentarily eludes. This part isn’t new to me, a seasoned mother of four. There have been countless nights in the last twelve years where I’ve brushed wet hair off a forehead, hummed a melody, and lulled a child back to sleep.

But my coaxing doesn’t work.

“What’s wrong, Polly? Does something hurt?”

My daughter nods her head yes, and a shot of electricity zaps through my extremities.

When she was born at 37 weeks, Polly wasn’t breathing. The doctors resuscitated her, and she spent the next three weeks, the first three weeks of her life, in an incubator fighting to breathe and battling a blood infection.

It was weeks before I got to hold her for the first time. By the time I finally felt the weight of her tiny, five-pound being in my arms, her father and I had already been informed of her diagnosis of Down syndrome.

We were robbed.

Her too weak to leave her plastic dome and me, too weak to fathom the curve ball of Down syndrome in my well thought out life. I’ve had moments through the years where my arms ache to hold Polly the baby. What I wouldn’t give to go back and scoop her up, to hell with my fear of the unknown, to hell with sickness, because if I could go back in time, I’d probably have the power to make her well with a slight touch to her forehead.

“Show me where it hurts.”

Polly gestures towards her head.

“Your head? Your head hurts?”

She nods yes again. I pull her up onto my chest. It’s not as easy as it sounds. She’s in first grade. We are planning her seventh birthday party in a few short weeks.

But I pull her to me, because we don’t screw around with headaches in this family.

Three years ago, Polly had a catastrophic stroke which later resulted in the diagnosis of Moyamoya, a disease that thins the arteries in the brain to the point of strokes and seizures. Apparently, she had not been born with one diagnosis (Down syndrome) but two (Moyamoya), and unbeknownst to us, this disastrous disease had been causing mild strokes in her brain throughout her short little life.

Polly underwent two brain surgeries that diminished the chances of recurrent strokes and seizures from 67% to 7%. She rocked the surgeries, actually running circles around me after the second one, just days after her neurosurgeon cut through skin, skull, and brain to create new paths of blood flow for our girl.

“Here, honey, let me see.” I force Polly’s face towards mine and examine her for signs of stroke or seizure. There’s no twitching, or any other signs I know to look for, so the fear of the moment releases into the air around us. I hold her to my heart, like I longed to do after her birth so many times. She settles in my arms and sinks into me. My body is quicksand. I engulf her.

In her short life we’ve danced around death more than I ever expected.

But I don’t take for granted that she is here, tonight, in my arms. I know too many mothers whose arms are empty today. And that knowledge stays with me. My heart is with those mothers. But she’s here. It is a privilege to feel her weight on me, and to know that she is happy, she loves her life, and at least today, is well enough to fill up on her joy, splashing those around her, and continually plugging up my heart, so that I can be filled too.

Polly sighs and falls deeper into sleep.

And I hold here. Here. Like this well into the night.

Because I can.

Gifts from a child with Down syndrome

 

© Qtrix | Dreamstime Stock Photos & Stock Free Images

© Qtrix | Dreamstime Stock Photos & Stock Free Images

 

(Join me in welcoming Chris Newlon as our guest blogger today. Thank you Chris for your beautiful post!)

 

 

 

Gifts from a child with Down syndrome

In the first few years of life, our daughter Rebecca had two major operations, a delay-in-proper diagnosed bowel issue, and pneumonia three times. This can set anyone’s development back but was especially difficult for her as she was born with Down syndrome.

As Rebecca struggled through those years and slowly grew stronger, her increased mobility allowed her greater independence in her interactions with others. Where once she was held and carried around to the whims of those bigger than her, she became mobile enough to escape from those arms and pursue her real needs and desires.

Rebecca loved this new independence and began to interact with others in a very unique way. Whether it was a friend of mine, a sibling or an occasional stranger, she insisted on giving “something” to them. She would hold out her hand as if she had an object in her tiny fingers and waited until the person held out their hand to accept her “gift.” Of course nothing was there to the naked eye but everyone accepted her gesture with a quiet smile. Strangers were often hesitant at first but eventually played along. Over the years I realized she was truly “gifting” a part of herself to others.

For family and friends who knew Rebecca, this gesture was a good thing, even if we didn’t understand what she was doing. Teenaged friends of her siblings were most often the recipients of these gifts. The energy released was almost palpable, and they knew it. More than once they came back into the house to get “gifted.”

They took the “gift,” curled their fingers around the imaginary object now in their palms and held it tight. This was often followed by pressing their palms to their hearts and smiling that deep, teary eyed smile you smile when you’ve been reached by something you can only feel. But always, they looked her in the eyes with love, acceptance and for a brief moment, peace between souls. They knew she had given them a part of her spirit to carry close, to comfort the heart and bring a bit of joy to their day.

Since Rebecca’s speech has become more distinct and frequent, she has replaced this gesture with words of comfort.  “How was your day?” to her dad as soon as he walks through the door at night. “Let’s call John (or Joe),“ when she thinks he needs to hear her voice in the middle of the day. “You ok?” to all of us if looking a bit pensive. I love hearing the words that I always knew were in her head. I love to see others’ reactions to the deep thoughts and compassion that come from this young heart. This language acquisition was a long time coming after years of hard work on her part, and she continues to hone these skills daily.

But every once in a while, I wish she would offer me one more of her precious gifts that had no words, and required me to listen with my heart.

 

Chris

Chris Newlon lives in Northern Illinois and has been married to Shawn for 31 years. She’s mom to Sarah (& her husband Jeremiah), Joe, John, Jessica, and Rebecca who has Down syndrome, is nine years old and in the third grade. A retired occupational therapist since the birth of her eldest, Chris volunteers at GiGi’s Playhouse McHenry County, is a National Association for Down Syndrome Speaker, and has been involved in lots of school activities over the years.

She stands tall, not trying to fix the child I adopted

She stands tall; not trying to fix the child I adopted

Stands

When we adopted Evangeline from Ukraine in 2009, she hunched. She cowered. She chose to spend her time hidden in little pockets of the house, behind the sofa, under the comforter on her bed.

How would I bring her out of her shell? How would I get her to not only make eye contact with me, but to trust me and let love in after two and a half years of a myriad of caregivers, confined to a crib a lot of the time, and no real person in her life to call her own?

I resolved to fix her. My love would break through.

Oh, I tried. And failed. And tried some more.

As her mom, I started to hunch too.

Guess what? I couldn’t do it.

I could not fix my adopted daughter. There were too many things at play: her diagnosis of Down syndrome, abandonment, autistic tendencies, fear, distrust.

But with time, fixing Evangeline fell by the wayside. God started to show me that I didn’t need to ‘fix’ Evangeline. That wasn’t my role.

She did not require fixing.

He pointed out to me through pools of tears and feelings of failure as her mother that I simply needed to love her. Not fix her.

Once that thought occurred to me, the pressure eased.

Sure, I still try to help Evangeline break out of her shell. I drive her to therapy. I read to her, do hand over hand with her to complete a puzzle, teach her how to use pictures to communicate since she is non-verbal, and encourage her to look people in the eye, to give high fives, to realize her surroundings and engage.

But I am not desperate to fix her anymore.

Would I like to hear her voice? Absolutely.

But am I content being her mom, and loving her for who she is. A resounding yes.

Today I spent the morning in Evie’s classroom for observation.

I saw a little girl happy to be at school.

I saw a little girl who still doesn’t really acknowledge those around her. And I’d be lying if I didn’t say that my heart ached to see that she was one of the lower functioning students in her special needs classroom.

But I also saw her standing tall. Confident in herself. More willing to look people in the eye. More open to returning smiles and allowing people into her world.

She watched me gather my things to leave for home. And something amazing happened to this Mama who all along simply craved her love, and let that drive stoke the fire to try to fix her to our relational detriment.

She walked over to me, and raised her hands for me to take her. I picked her up, and she wrapped herself around me tight. A smile lit her face.

She did not want to be put down. She did not want me to go. She knew I was her mother.

And that she belongs with me.

I cuddled her for a while, whispered love and peace into her soft little ear.

And when I put her down we stood, my daughter and I, looking at one another …

Both standing tall.