The Quiet Before the Storm as My Son With Down Syndrome Grows Up

A typical week for me may seem like a hurricane to others. It includes 24-hour care of my three kids under 5-years-old, at least three private therapy sessions for my son with Down syndrome, typically one medical appointment, swim lessons, preparing three square meals a day, and keeping house –whatever that entails in 2017!
I do this with no family support system (the closest lives 500 miles away), and my husband works 80+ hours a week as an Emergency Medicine Resident — although he’s amazingly helpful even with his schedule.

Looking at our life, one would not imagine these days are the sunniest. But in many ways, this is the quiet before the storm!

My twin boys are in their third and final year of preschool, I realize this is the last year our young family will enjoy the safety of naivety. I have one more year to bask in the glory of unasked questions, the freedom of play and power of a small circle of family and friends who accept us for who we are: perfectly imperfect!


Troy (back left) enjoying life with his typical twin, Hunter.

That’s one more year of easy-peasy IEP meetings, no homework or standardized tests. One more year of kids playing with Troy on the playground without asking why he’s so little or can’t talk like them. One more birthday where the boys want a party with the same friends, same theme and same gifts. One more year where my boys think of themselves as they are: twins.


Next year, my first born sons will start “real school,” and boy has it changed a lot in the generation since I attended kindergarten. You’ve likely heard the news: kindergarten is the new first, or is it 2nd grade? As we peacefully go through life in the safety of our home, I often worry if Troy will be ready.

Of course he will, whether I’m ready or not. I also worry his typical twin, Hunter, will struggle with the confirmed knowledge that Troy is indeed different. The words ,“Down syndrome,” come up a lot in our house, and even though Hunter uses these words freely in conversation, he has yet to assign them to his twin brother.

As a parent of a child with a disability, I’ve practiced in my mind how I might explain this revelation of difference to my typical children. Will I choke when the time comes to pass on this sage advice?

Troy’s sister, Cora.

My 2-year-old typical daughter, Cora, is the perfect playmate and foe to Troy. Theirs is a love-hate relationship. But I’ve noticed lately she’s been innately mastering milestones that Troy is just starting to find easy: jumping, verbalizing complete sentences, dressing independently. How will I navigate the rough seas of a younger child surpassing an older one? Still, these intimate family dynamics will likely not be what causes the biggest waves a year from now.

Instead, it may be the storm outside our doors.

It may be the teachers or school administrators who deny equitable education to my son with Down syndrome.

The older students who ask Hunter why his twin can’t do the same things he can.

The sports coaches who can’t find a spot for Troy to play on a peewee team.

The parents who remark about how “cute” Troy is, while quietly worrying about the impact of his presence in their typical child’s class.

They say meteorology is the only profession where you can be wrong 50 percent of the time. So, here’s hoping my predictions for the storm to come are unfounded!

Even if my predictions do come true, I realize it will be OK. We’ve been through a lot as a family, even before our kids were born. Even through rough times, we’ve held tight to each other knowing we’d see brighter days.

And what I’ve learned and hope to instill in my children is: the sunniest path isn’t always the prettiest; sometimes the storm helps you put life into perspective.

Sure, if I we could have it all, I’d wish my kids easy, fun-filled lives, full of lots of interesting friends, successful careers, heaps of money and perfect marriages. But if we can’t have it all — If I can only choose a few — easy wouldn’t make it on my wish list.

Instead, I’d rather my children live an authentic life, where they feel compelled to stand up for what is right and good in this one life we’re given. This is the rainbow after the storm in a life connected to Down syndrome. We are the lucky few!

Follow Troy’s journey of inclusion at

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My Daughter With Down Syndrome Isn't 'Special'

As parents of four wonderful children, one of whom has Down syndrome, we are often at doctor’s visits. Typically, folks in the waiting room like to chit-chat. But when we have Noelle bouncing on our knee the conversation sometimes goes to: “Does she have Down Syndrome?”

Noelle is just 13 months old, so we’re not too versed in all the ways we could (maybe should) be offended by strangers and their inquiries. Sometimes we feel like folks are just curious. Other times, they follow-up with something that makes their insensitivity obvious.

Like today:

My wife: “Yes, she does. Her name is Noelle.”

Stranger: “Oh, she’s so cute. I’ve seen much worse.”

My wife: [awkward silence]

In retrospect, maybe that was a teachable moment. Maybe when we’ve been parents to Noelle for a decade we’ll have pithy remarks at the end of our tongues. One day we’ll know how to help this person understand she wasn’t being helpful at all. But today, we choose awkward silence.


In our house Noelle isn’t “special.” She’s the youngest of four. She gets all the attention the youngest of four could possibly get — which sometimes can be very little. She wears the same hand-me-downs our third had before her. She eats the same homemade mashed up fruit/oats my wife made all our kids when they were that age. She doesn’t have her own room, and we don’t drown her with toys and clothes to make ourselves feel like we’re doing something special for her. When I refer to her with colleagues I say “our littlest one,” and they never ask “the one with Down syndrome?” She’s just Noelle, and she’s our fourth and we love her to death.

That we love her to death is really the most important thing I want people to know about her right now. Whether or not her condition is “worse” or “better” than others is irrelevant. Whether her heart and lungs will need another surgery when she’s a teenager isn’t ultimately a more important question than whether my 10-year girl will survive the onset of puberty or not, or my boy learns to lose board games without crying. Each of our kids have their own needs, and we take each need and child seriously with healthy doses of exerted love.

We read plenty about parents of children with Down syndrome. There are so many inspiring stories from parents who really advocate for change in their schools or push legislation for all kids with disabilities. We often feel slightly guilty by just passively continuing to be Noelle’s parents without all that fervor. I’m thankful there are those parents in the world. Right now, I’m not one of them. Loving and parenting Noelle is a full-time job for both of us, and we have three other kids to love and manage as well. Maybe one day we’ll be disability rights champions, but today we’re just Noelle’s champions.

When someone sees Noelle and judges her by her appearance I’m really sad for them, because despite what they might have seen before, they’ve never seen Noelle. She does love to smile, but she makes her will known clearly. She adores her bigger siblings, until they get too much in her space. But she’s just 13 months old and not ready to fit in a box before her full personality is even realized.

In retrospect, there’s plenty I could have said to that stranger. I could have taken a deep breath and drilled her with guilt and shame, or simply politely put her in her place. But that doesn’t help me parent Noelle better. We don’t need to shame people who don’t get it, but show them instead how Down syndrome doesn’t define her — our family’s love for her does (as it does all our kids).

Being a parent to a child with Down syndrome is new to us, but being a parent is not. We’re leaning on what we know and so far it’s working just fine for her and for our kids.

When she was in the womb and we told our kids about her condition, they naturally asked, “What does that mean?” We just said, “It means she’s your sister, and we love her. She’ll learn things a little more slowly but she’ll have her own whole personality and favorite things and we’ll have to figure her out just like we did with you guys.”

I don’t want her condition to be invisible, that’s not what I mean when I say she’s not “special.” I feel like she’s got all kinds of mysteries and hidden personality traits that we’ll uncover in her as she grows at her own pace. And I wish others would be attracted to get to know who she is, too, rather than put her in a box based on what they think they already know about Down syndrome.

At the end of the day, we aren’t called to change the world to see Noelle as we see her. We aren’t responsible for changing people’s minds or forcing them to check themselves. We do feel called though, to love Noelle, just as she is.

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My Daughter With Down Syndrome Had Open-Heart Surgery

My stomach was in knots. I was worried and scared. I did’t want my baby to hurt. I didn’t want my baby to be afraid. I looked at my precious little Savannah as I changed her diaper, as I bathed her and as I kissed her tummy to make her laugh. I could not help but think her newborn skin, flawless and new, would be forever changed after having open-heart surgery. I knew there would be a scar.

As Savannah approached her open-heart surgery I had many emotions and feelings kept inside. I stayed busy to occupy my mind. I tend to repress emotions that are overwhelming, as to not deal with them. When I came across photos of a little one after surgery, I gasped and tears fell. I thought about her chest being cut open and someone literally having her heart in their hands. I thought about her being prodded and poked. I thought of countless wires and tubes coming from her body. Then, I thought of the physical strength she would gain.

I believe God promises to never leave us. He created Savannah and made her in His image. He was aware of her heart defect before she was even conceived. God chose to use a surgical team to repair her heart. This is where my faith comes in. Trusting in God and His omnipotence is what strengthens my faith and draws me closer to Him.


I wanted to see my daughter Savannah healthy and to feel good and full of energy. I focused on her well being.

I trust in God; I truly do. However, I’m human. I am protective and defensive. Several moms who had been in my shoes reached out, and that means more to me than I can express. I, too, want to be a light and encouragement to others like many have been for me. I hope to be a conduit for love to others, and by sharing our story, help the next one in line.

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Charley on the new bike with Trevor standing by his side.

When My Son's Friend, Who Also Has Down Syndrome, Gave Him a Bike

For the longest time, Charley has been bugging us to get him a bike. Like every five minutes.

It started around Christmastime.

“Mom, I want bicycle,” he’d say.

“It’s winter. No one rides in the winter,” I’d say.

“Oh, I do.”

I’d open the blinds, “In the snow?”


“Not happening,” I’d say, and he’d stomp up the stairs. I could hear him in his room saying, “Mom said no.”

Then spring came along. Enough time to forget about the bike. Thank you, Lord. Or was it? Every time we passed a bike in a driveway. Every time a bicycler passed us on the road, he’d point, “I me one.” (Charley may have speech challenges, but never fails to communicate.) And I do mean, every single time.

“Mom, remember, I want bicycle,” he said one morning. Thanks a lot, Lord.

“Maybe someday,” I said. But probably not. Again, he’d stomp, “Mom said no. Again.”

Did Charley know how much these things cost? Not that we wouldn’t spend the money on him, but the last time we bought him a bike his foot got stuck in one of the spokes. He fell off, kicked it and said, “It no work.”

He never got back on.

I reminded him of that. “Charley, we can’t just go buy you a bike. Everybody knows you’re supposed to get right back on the horse.”

He looked around, “What horse?”

“It’s a figure of speech, Son. It means when you fall off the bike you have to get right back on. You can’t just give up.”

He nodded his head, “Pleeeeaaaassseee. I promise.”

“We can’t just go buy it. We have to save up.”

“Woohoo!” His enthusiasm was contagious. So much so I found myself at Dick’s Sporting Goods looking at the bikes.

A sales associate approached me, “May I help you?”

“Yes, I’m looking for a bike.”

“Who’s it for?” she asked.

“My son.”

“These are the girls’ bikes.” she said.

She was right. I was standing there looking at the girls’ bikes. “Think one of these would fit me?”

“Sure, hop on,” she said and held the bike.

Steady now. Just hop on the bike. A little jump. There you go.

“Go ahead,” she said, “just a small hoist.”

She’d obviously not noticed the size of my rear end. “There’s no such thing as a small hoist,” I said. She tried not to smile, but I saw the curves of her lips.

“I’m trying to see if I can get a bike to keep up with my son. He just got a three-wheeler.”

“Yes Ma’am.”

“Honest, I really want to do this.”

“Yes Ma’am.”

“I’m a little challenged. You see, I shattered my femur a few years back, and…”

“Yes Ma’am.”

I had one leg over the seat (well, partially). And one leg still on the ground.

“I’ll hold the bike, don’t worry,” she said.

“Don’t let me fall.” The bike wobbled.

Any minute now…

She looked at her watch.

“Lunch time?” I asked. Please say yes. Please say yes. “Um, yes Ma’am.”

Would you stop calling me Ma’am? What do you think I am, 95? No wonder I can’t get my rear end up onto this stupid thing. 

Need I tell you I came home without the bike? And worse, I came home without even getting on the bike.

Charley met me at the door.

“Mom, where were you?”


“You got my bicycle yet?”

“Maybe sometime, but not today.”  Epic “F” in athletic parenting 101.

Later that week I told my sister about it, “Marcy, I’m thinking about getting a bike. I saw one on the yard sale site.”

I studied her face across the FaceTime screen.

“If I promise not to get one will you stop laughing?”

Every day Charley followed me around, “I promise. I promise.”

What was he promising? I have no idea. That he wouldn’t kick the bike? That he’d keep his foot out of the spokes? That he wouldn’t abandon the attempt to learn?

As luck would have it, he stopped asking. Problem solved.

This ranks right up there with: how naive I can be?

How long has he been my son? How long have I lived with that 21st chromosome? The one that operates like a diehard battery? Going on 27 years now? Silence means one thing: he’s concocting some plan to make me cave.

Just when I thought that subject was a done deal, there was a knock on the door. It was the neighbors, asking if Charley wanted to come across the street and play basketball. Thank you Lord. New friends. It’ll take his mind off the bike.

“Charley’s going to play basketball with Amanda, Shane and the girls,” I told my husband, Brad.

A few minutes later I looked out the window and what do you think I saw? My adult son on the little girls’ tricycle. And there, right beside him, were the neighbors. Walking down the street with my son as he attempted to pedal a bike meant for a 4-year-old. Needless to say, it was a little top heavy.

“We gotta get him a bike,” I told Brad. I posted about it and asked if anyone knew where we could get an adult tricycle. A half-hearted attempt at best.

That’s me, the one hiding behind the computer. Mother of the year. I’d done my part. At least I tried, didn’t I? At least we wouldn’t be chasing him around on some bike. I stand accused of being a little overprotective. OK, not a little. A lot. Point taken.

The next day rolled around, “Mom, you got my bike yet?” His face lit up with anticipation.

He had that same look on his face he had when he was determined to take his friend Jordan to the prom. I told him it probably wouldn’t happen. Still, he insisted, “Oh yes I are,” he said. Little did I know it was Jordan who invited him, not the other way around. The next thing I knew, he was in a tux. The man doesn’t give up. Ever.

“No, Charley, I didn’t get a bike yet. Let’s talk about it later, OK?”

His scrunched grin wilted, “My friend got a bicycle,” he said, his voice dropping a few decimals, referring to the neighbors and their pigmy-sized little three-wheeler. Like, geez, Mom and Dad, you guys just don’t get it.

“Forget about it, Son. Now I have spoken. Drop it. It’s not happening.” Lord, he’s wearing me out.

That settled it. We needed to get him a bike. But how? How do we do the impossible?

I sat down in my recliner and flipped open my iPad. Time to look at the newsfeed. To see what was what. And what do you think I saw?

A message from our friend Jackie at church, who said her friend Trevor saw my post and wanted to give Charley a bike.

Could this be? Someone would do this for our son? Someone he didn’t even know? Someone we’d never met?

Now. Before I go any further, I must tell you; it wasn’t the only offer. Our friend Tina from Knoxville saw the post, too. Two offers of getting a bike for Charley. I nearly fell out of my chair. People are so generous. There’s a reason I walk around with a lump in my throat.

Before I knew it, Trevor made a house call accompanied by his mom and dad and an adult sized tricycle in the back of a truck.

Charley had no idea. It was Trevor’s surprise. And it was not just any bike, it was his bike. He’d learned to ride a two-wheeler, and told his mom about Charley.

Charley on the new bike with Trevor standing by his side.

Every day Charley runs downstairs and says, “I go on my bicycle?” And every day he pedals his way around the neighborhood. And then again and again. And just like that, Charley is a big deal on wheels.

Yesterday during my husband’s sermon he was talking about Ecclesia, which means “to go out.”

“That is what we are called to do as a church,” he said. “To go out. Not to keep to ourselves in a building, but to take the church out of the building.”

As I sat there listening to him, I thought about Ecclesia and the people I’ve known over the years who know how to go out. Those who take meals and communion to those who cannot come to the church. Those who make home repairs for the elderly, and visit the sick in the hospital. There are a lot of ways to practice Ecclesia.

Sometimes it directly benefits the church, and sometimes it’s just a gesture. It’s church. It’s what you do. Any way you look at it, to practice Ecclesia is to do what God asks us to do.

I thought of Trevor and how he said Jesus had put it on his heart to give his bike to Charley.

How is it that we’ve been a clergy family for as long as I can remember, and yet along comes a young man with an extra chromosome who seems to nail this thing called Ecclesia? This “knowing” of how to go out? This sharing about Jesus in his heart?

The world refers to it as Down syndrome. I refer to it as heart. An extra heart, if you will.

It takes heart to reach out to someone you don’t know. To see a need and fill it. To take something you value and offer it to someone else. To get pleasure from making others happy. To expect nothing in return. No ulterior motives.

In a world that seems to concern itself with me-isms, boasting and upping one another, it’s good to know there’s a Trevor around. A Trevor with a heart bigger than the love of self. A heart that’s worth writing about.

I’ve always said, “Don’t underestimate that extra chromosome. The one that makes Down syndrome such a mystery. It often surprises in ways we least expect.”

On second thought, forget about the extra chromosome. Trevor has enough heart for the rest of us.

Editor’s note: This story has been published with permission from the author’s son and Trevor.

Follow this journey at Life with Charley.

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When My Son With Down Syndrome Proved He Can Participate in Music

When my son, George, who has Down Syndrome, was in the middle of second grade, we moved to a different house in a different part of town. This was a good move for our family: a larger house and a better school district. The move was hard on George. He was having trouble with the transition. We also went from a school willing to fully include him to a school that wanted him to be in a self-contained program.

After many meetings, much debate, an attorney and an advocate, we agreed on a hybrid model of placement in a self-contained special education classroom balanced with mainstreaming into typical classes in one or two academic subjects and all elective classes: Technology, Music, Physical Education and Library. Even though I wanted him around typical peers throughout the day, I clearly didn’t have the staff support of full inclusion. I thought the hybrid model was a compromise to support behavior and academic needs.

The music teacher came to several school meetings trying to convince me regular music class was not for my son. Once she said, “Your son is teased by his classmates in music class.” Another time, “In regular music class we read, write and compose music, adapted music is a better fit because we sing and dance.”


I tried to fight back, “As mandated under the IDEA Act, he must be provided with accommodations to participate in the least restricted environment. He can still attend adapted music, but I would like him to be in regular music as well.” I made suggestions on how the aide could adapt the curriculum. A few attempts were tried but George continued to be served in only adaptive music through fourth grade because regular music was deemed too hard and he couldn’t behave.

In fifth grade the music curriculum changed. Instead of general music, kids were placed in band, choir or orchestra. George wanted to play clarinet like the character Squidworth on “Sponge Bob.” He was enrolled in regular band class with a new teacher. Would this be too hard? Could he behave?

All year I never heard a complaint . In May we were invited to a band concert. George behaved quietly and appropriately. He kept up with “Fere Jacques,” “Ode to Joy” and an impressive Queen remix of “We Will Rock You.” Were there a few clunkers?  Yes, those were probably notes by George. Did he stand a little too long after the applause stopped? Yes. But other than that his performance was great. This was because this teacher had put his energies into giving George a chance.

It took every bone in my body not to walk up to the general music teacher and give her a piece of my mind. I think George’s performance may have accomplished that lesson.

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Four pictures with different facial expressions of little boy with Down syndrome wearing a red shirt

To the New Moms of Kids With Down Syndrome: It Will Be OK

During my third pregnancy we found at the 20-week ultrasound we would be adding another boy to our family! Everything was going smoothly until the ultrasound technician couldn’t see something on Charlie’s heart. As a mom of two children already, staring up at the screen trying to see our baby’s heart I knew something didn’t look right. The ultrasound tech was asking me questions I had never been asked in an ultrasound with my other children and things began to feel really awkward. The technician was cold and never smiled once. Briskly she said, “It looks like your baby might have Down syndrome.” She got up and left the room. I was trying hard to be brave, not cry and let those words sink into my heart.

Down syndrome? I knew nothing about Down syndrome.

The doctor came in and urged us to come back the following week for another ultrasound to see if we could see all of Charlie’s heart. He was a kind and compassionate doctor. I have thanked God so often for that man! The conclusion was that what we were looking for in Charlie’s heart couldn’t be found because it wasn’t there. Charlie had three chambers instead of four, along with a cleft valve. The technical name for his heart defect is called atrial septal defect (ASD), which is the most common heart defect among babies with Down syndrome. We were told if he survived he would need open-heart surgery.

A few weeks later we saw a pediatric cardiologist who confirmed Charlie would be born with a heart defect. I also took a blood test that confirmed Charlie would be born with Down syndrome. When the geneticist called with the blood test results she said, “Hello, Nichole, I am calling to give you the results of the DNA test that you took last week. Unfortunately, your son will be born with Down syndrome.”

Unfortunately? My son?

Oh the thoughts that were racing through my mind at that moment. Why do people presume Down syndrome is unfortunate? This is the mindset that scares people into thinking their child doesn’t have worth. This is the mindset that makes the abortion rate what it is in women who receive a prenatal Down syndrome diagnosis! The only thing unfortunate in this situation was the geneticist’s sorry attitude towards my son’s life!

From that point forward the pregnancy was considered a “High Risk Pregnancy.” We went to ultrasounds almost every week to monitor Charlie’s progress. We were told most babies with Down syndrome do not make it to full term, which could complicate the matters with Charlie’s heart. Our perinatal doctor and pediatric cardiologist were very gentle but honest in saying they could not guarantee our son would live after he was born. This was extremely difficult to bear.

Maybe you are reading this today and you have received a Down syndrome diagnosis and you are filled with fear or worry for what the future holds for your child. Perhaps you feel inadequate to take care of the needs of a child who will have medical complications or need extra help. Maybe you think you wont be “enough” for your child. Or maybe you are feeling guilty for being scared and overwhelmed by a lot of new information. Well, I’m here to tell you all of the above is completely OK and normal to feel! I believe I can safely say, most of us in this same situation have had similar thoughts and felt the same way.


There is a lot of “bad” and “outdated” information out there about Down syndrome. And not to mention, many doctors who present Down syndrome as “doom and gloom.” You would think by now this would not be the case…but it is.


Doctors and professionals can tell you a lot of statistics, numbers and facts — and a lot of it doesn’t sound very promising or pretty. But do you know what they won’t ever be able to tell you? They won’t ever be able to tell you what your child’s favorite color will be or describe their love for bananas or how on their 1st birthday they will cry because they were afraid of the candle. They won’t be able to describe how music makes your child’s face come to life! They won’t be able to describe the love you feel the first time you see your sweet baby’s face and kiss their fingers and toes!

They won’t be able to tell you your child, who is born with a disability, will impact their siblings in a profound way, instilling compassion, patience and love for others.

And they definitely won’t be able to tell you this child — although born with a broken heart or medically fragile and an extra 21st chromosome — this child, the one chosen for you, will teach you how to love deeper and stronger than you could have ever known was possible. Your child will teach you the meaning of real, true, deep love. The kind of love that fights for what is right, stands up for the truth, no matter the cost, and helps you to reach down and become resilient like no Mother or Father has ever been. This child, this sweet babe, will teach you to see love in a different light. The kind that keeps hoping and never giving up for the good things in the world! This child, although different from the rest, will be the one who teaches you what humanity and kindness is all about.

You may very well meet some people along the way who don’t understand these things. In fact, they may even be completely oblivious to them. Believe it or not, this is an opportunity to teach others about how our kids with Down syndrome are children first. Our children, if given the chance, can teach others some really good lessons. Our children can be lights in a world that so badly needs goodness and kindness.

And perhaps you are reading this thinking, “I’m not ready to conquer the world or put my kid out there to teach people nice things…I’m just trying to accept my life has been flipped upside down.” That’s OK. Take it one day at a time. It’s OK to be scared, nervous and fearful. Let all that emotion out. Find someone who you can confide in. Someone you can be real with. You are not alone.

I would be lying if I said our lives are easy-peasy-lemon-squeezy. There are things that are difficult about having a child with Down syndrome, but I would like to say equally, there are things that are difficult with my children who do not have a diagnosis. We work extremely hard to help Charlie accomplish small tasks, sometimes for months at a time. There have been plenty of days when I have felt defeated, scared and lonely simply because we have worked so hard and seen little progress. However, the joy that comes from all of us helping Charlie to accomplish something as simple as drinking out of a straw, far outweighs the difficult parts. Charlie’s life brings us together. Charlie’s life has been essential in teaching us all patience and acceptance for each other’s abilities, good or bad.

What I want others to know about Down syndrome is that it isn’t scary. My son and your children, they are so worthy. Worthy of love and affection and of any opportunity that comes along their way. They are world changers, if only given the chance. Are you willing to give them that chance?

So, my friend, welcome to this new journey called Down syndrome. You will experience ups and downs. You will have high-highs and low-lows. You will have hard days, just like anyone who is a parent. One day, any fear or worry you have will melt away. One day you might find yourself jumping and screaming, elated with joy, celebrating a milestone that perhaps you thought was never possible and yet here you are. You will realize you are now part of a secret world full of some of the best people you will ever meet. And I believe your life will be changed…for the better.

Follow this journey at Moberly Avebtures.

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