The Best Moment From Our Make-A-Wish Trip Was One I Didn’t See Coming


Many people have asked me what the best part of our Make-A-Wish vacation was. I jokingly answer that it was when Belle complimented me on how I did my daughter Namine’s hair.

Putting all jokes and kidding aside, I want to tell you of the memory I treasure most. It wasn’t at Sea World, Disney World, Gatorland or Clearwater Marine Aquarium. It was at Give Kids The World. They were showing the movie “Home” in the small movie theater they had at the resort. Namine and I were the only ones who attended.

It wasn’t the first time we saw the movie. We’d seen it in the theater back home and later rented it from Redbox. There would have been nothing special about this, either, but for Namine holding my hand throughout the movie. While special, even that is not the best part.

After the movie ended, Namine and I clapped. It’s typical for Namine to want to sit through the credits, listening to the music. She tapped me on the arm. “Daddy, let’s dance!”

The first song was energetic; Namine and I bounced and danced, leaving us both exhausted by the song’s end. Then the next song came on. It was a slow and emotional song. It’s the kind that Namine would often ask me to skip, or in this case, leave the theater because it held nothing exciting for her. Not this time.

Namine reaffirmed her grip around my neck, hugging me tighter. We eased into a slow rhythm. Holding my wonderful daughter in my arms, we danced large circles around the empty room. Whatever troubles we’d left behind in difficult months and hard years and whatever trials still lay ahead, none of that mattered. The moment was ours. It was ours forever.

The song ended, as songs do. As I put Namine down in her wheelchair, she smiled up at me. “Thank you for the dance, Daddy.”

For me, the best part of vacation was not the resort. It was not the many theme parks, exotic animals or zip-lining. No, the best part was getting to hold my daughter in my arms — just the two of us, dancing slowly and singing softly. The best part was seeing the magic in Namine’s eyes. It was not the pretend magic of theme parks, of rides and people in costumes, but the real magic of a daughter’s love.

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When My Son Found the Perfect Way to Describe Anxiety and Depression


My son is going to be 12 at the end of this year. He’s bright, easily carries conversations with adults and I’m told he impresses his teachers. But he’s occasionally insensitive, and sometimes he can hurt feelings. I’m sure it’s normal, but because of this I was understandably nervous to talk to him about the mental health problems I face.

What I take for granted, I suppose, is that he overhears my conversations on the phone and sometimes reads things over my shoulder as I write them. I sometimes forget I’ve said things out loud while he’s been near, which is easy to do because he rarely looks like he’s paying attention to anything. He’s usually absorbed in his own activities, whatever they are, apparently lost in his own little world.

As far as I can recall, I haven’t directly spoken to him about depression or anxiety, and I was pleasantly surprised to discover what he had to say when we had a little chat the other night. Here’s how the conversation went:

What is depression?

“Thinking that nothing can get better, and thinking there’s no hope even if there is a bit.”

What is anxiety?

“Fear. Knowing what’ll happen next but hoping it doesn’t happen.”

What do you think about people with anxiety and depression?

“They’re trying hard. They’re getting through — just about.”

Do you know that I have anxiety and depression?

“Yeah.”

What do you think about that?

“I think you’re doing well, you’re working hard.”

What do you think people should know about anxiety and depression?

“They should try to understand and give some respect. For those who have it, their lives are harder.”

Then, he said the most clever thing of the whole conversation.

How would you describe depression and anxiety? 

“It’s like a jar inside you, full of the anxiety and depression, and the jar is really hard to open. If you could just get the lid off the jar the anxiety and depression would get out and you could be happy, but the lid is stuck. You try really hard to get it off, but can’t do it alone.”

I must add I’ve had a difficult week with my son. He’s about to transition into a new school and routines are currently inconsistent. It’s been a bit stressful for him, and in turn has been extra stressful for me. But just when I was beginning to doubt him, he comes out with this.

He does listen. He does care. And I should never discount that perhaps his knowledge of what I’m going through affects him, too. But all in all, I’m so proud his true understanding and compassion is greater than what I’ve seen in many adults. So instead of feeling guilty that I might be adversely affecting him, I think it’s safe to say his experiences have aided his understanding and compassion for others.

I don’t think you’ll find bigotry toward anxiety or depression coming from my son anytime soon.

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5 Things I Didn’t Know About Depression Until It Happened to Me


I experienced my first depressive episode during the second semester of my sophomore year of college. After experiencing a series of events that shook me mentally and emotionally, my anxiety was understandably at an all-time high. Then, it suddenly crashed.

I woke up crying, went to bed crying and sat on the toilet crying for almost two weeks straight. Getting in the shower sounded like backpacking through Europe. Walking outside? Forget it. 

Hello depression, it’s nice to meet you. My name is Ariella and I have a feeling we’re about to get to know each other all too well. I’m aware of your friendship with anxiety, so I was expecting you would pay me a visit one day. 

Although I knew the surface facts about depression, here are five things I didn’t know until it happened to me:

1. It’s not enough to “distract yourself.”

To me, depression was almost like grieving, and just like you wouldn’t ignore the grieving stage of losing a loved one, you can’t just ignore depression.    

2. You feel alone, even though you’re not.

When I’m in the right mindset, I know I’m not alone when it comes to having generalized anxiety disorder and depression. But when I’m depressed, I always feel alone and somehow convince myself it’s true. The truth is you’re never alone. But depression can skew everything you know. 

3. It physically beats you up.

I always thought depression was the equivalent of sadness, but it’s so much more. It chews you up and spits you out. Along with the crying spells and irrational sad thoughts, my body became crippled. Getting off the couch to go to bed could be the biggest chore. Depression made me weak, suppressed my appetite and told my brain the only thing I wanted to do was sleep.

4. It’ll test you, but you’re stronger than you think.

During my first depressive episode, my eyes were so puffy I could barely see out of them. With time and patience (almost months for that first episode), I got through it and came out stronger than ever. As the quote goes, you never know how strong you are until being strong is the only choice you have.

5. Depression is the truest friendship test.

I found there’s no friendship test more accurate than the depression friendship test. Unfortunately, I lost touch with many people in my life after my first experience with depression. But if someone can’t handle you at your worst, they sure as hell don’t deserve you at your best. Depression taught me which people in my life will always be around, no matter what. When I’m depressed, having them around means the world.

Why I’m a Proud Helicopter Parent of My Sons With Autism


I’m the mom you see at the park, following closely behind my child. Sometimes I play with him and follow his lead. Like really play. I stomp in the puddles, walk up the slide and swing so high that terror dances with exhilaration. He reminds me how good it feels to do things that we adults call pointless. Sometimes I am simply a shadow, making sure he stays safe and is well behaved. Either way, I’m always close behind.

I have heard it referred to as a helicopter parenting. “It means being involved in a child’s life in a way that is overcontrolling, overprotecting, and overperfecting, in a way that is in excess of responsible parenting,” Dr. Ann Dunnewold, a licensed psychologist, told Parents.com. So you see, it’s supposed to be a bad thing, but as far as parenting goes, it’s one that is necessary for me.

I don’t go to the park to relax. In fact, I frequently have to talk myself into even going, and I have a pep talk with myself the whole drive there. You can do this. You will not let your fear compromise their childhood joys. And I often make a pact with myself — 30 minutes. No matter what you can handle 30 minutes.

I don’t mind if you sit on the sidelines. This parenting thing is tough, and if you have a minute or 20 to sit and relax, by golly, go for it. Heck, I don’t even care if you paint your nails while eating a turkey sandwich. I don’t mind if you’re like me, following close behind. Unless it’s dangerous, how you parent is absolutely none of my business. When it comes to parenting, there is no one size fits all. There are often two extremes and a million grays in between.

I’ve seen a surge of “Dear Helicopter Moms, You’re Ruining It for Everyone Else” articles. I feel sad for anyone who would witness my behavior and interactions with my boys and simply see a helicopter mom. They’re missing out on all the beauty in our gray.

You see, both of my boys have autism. A walk in the park is anything but. I often leave the park with my ponytail undone. I’m speckled with earth and sweat. On rare occasions, I leave with tears in my eyes.

My youngest has trouble following simple directions. Stop. Come here. Wait.

We work on it daily in therapy, but it is best reinforced through real-life experiences. He still tries to run by himself into dangerous parking lots and streets. He would hop into a stranger’s car without a glance back at me. It would be safer and easier at home, but that wouldn’t be fair to him at all.

My oldest has a hard time sharing and waiting his turn. He has problems with proprioreception or the ability to “feel” his body and what it’s doing. I have to make sure he doesn’t knock over your little one on his way to the slide. He frequently runs into people. He also thinks as long as he says, “My turn,” he can have something instantly. The swing, your ball, your chips.

I love my precious two, and parenting them is an honor. I just wanted to share some gray with you today, because it’s easier to love more and judge less when we know someone’s story. And everyone has a story that helped shape us into the person we are and the choices we make today. My boys taught me that if all we see is the cover, we’re missing out on the best parts of what makes up the book. I keep that in mind when I feel that pang of unfamiliarity when watching people interact in the world.

The way my children view the world isn’t wrong, but it is different. And because they view the world differently, so do I. And that is a gift. It’s given me a better perspective and given us a beautiful story.

A Proud Helicopter Parent,

Chrissy

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To the Man Who Said ‘Just Don’t Fly With Him If That’s the Way He Is’


To the man on our flight from Minnesota to Texas,

I’m sorry if my son Will’s occasional movements and loud talking disturbed your flight. I truly am, though in all honesty, he was good on this flight and no more active than a neurotypical child would be. He never once directly disturbed your seat, just the empty seat next to you that was in front of him. (I try as much as possible to put him behind empty seats.)

I’m also sorry you couldn’t speak to me or the flight attendants civilly during the flight to tell us your problems with my son, so that either you or we could have changed seats (there were several available). I’m even more sorry you felt the need to loudly bring up your evaluation of my son’s behavior at the end of the flight and not temper your response as I tried to explain the situation.

However, I’m not sorry that I will not heed your suggestion of “just don’t fly with him if that’s the way he is” because, as you wouldn’t let me explain, he needs to fly to Minnesota every other week because it’s his only chance at life. And frankly, no special needs parent should have to hear that callous and discriminatory restriction.

I’m sorry you didn’t take a moment to talk to my boy and see what every other person sees as we travel: a sweet boy with a loving and generous heart, who has a smile and a kind word for everyone he meets. My boy sees the people most of us ignore and I love him for his ability to make friends with every person with whom he comes in contact. I’m sorry you didn’t want to be his friend, because you’ve missed out on something special.

I will pray for you and pray that no one you love ever receives a terminal diagnosis that causes them regression or loss of their faculties that makes others look at them as if they are “abnormal” or “worthless.” Because I never want anyone, even you, to feel how I was made to feel tonight.

All people are significant. All people deserve kindness. All people deserve respect. My son knows that. I hope one day you learn it, too.

Sincerely,

Momma WILLPower


To learn more about Will and his journey with Sanfilippo Syndrome, please visit the WILL Power Facebook page.

To learn more about Sanfilippo syndrome and what you can do to help, please visit www.CureSFF.org.

3 Surprising Ways Strangers Have Reacted to My Son With Dwarfism


My son’s blond hair and hazel eyes are not his most unique features, though quite special. His beautiful smile, captivating everyone, is not what sets him apart. My son’s dwarfism is what people notice when meeting him for the first time. I welcome each encounter hoping to share the miracle that is my son.

Here are a some memorable moments that especially stand out to me.

1. A Surprise Question:

“How old is your baby?” the nurse asked.

I winced at the word, baby.

Mmm, how should I answer? I’ve come to the realization that being direct is the best method. I used to answer with just a number, not mentioning whether it was in months or years. I thought being elusive was the best policy, but then I’d see a look of confusion and I’d end up confessing my son’s true age.

You see, my son has a rare form of dwarfism called thanatophoric dysplasia. At 10 years old, he is 25 inches long and weighs in at around 20 pounds, give or take depending on how much cereal he eats. He has the face of a young boy but the body of a baby.

We were at a restaurant in Charlotte, North Carolina when a waitress asked about our son’s age. We both paused and then my husband asked, “How old do you think he is?”

She looked at Samuel, silent for a moment. “About nine months old.”

We both smiled. Instead of leaving the conversation there, my husband began to share what a miracle our little boy is overcoming a “not compatible with life” diagnosis. We shared how he wasn’t expected to live past birth, his months in the hospital and how we were blessed when he was able to come off his ventilator.

2. A Surprise Smile:

Recently, as I was entering the grocery store, I was following several steps behind my husband as he pushed my son in the stroller ahead of me. A young lady with silky brunette hair was leaving the grocery store. As she passed the stroller, she tilted her head back to look at my son. I then saw her face light up with a brilliant smile. I tucked her response in my heart.

We didn’t get to tell her she just saw a miracle, but her response really touched me.

3. A Surprise Reaction:

At a local restaurant, we followed the hostess to a booth. As we passed another table, my son’s eyes mesmerized a tall blonde eating her meal.  After we finished our meal, I asked to pay the tab and was informed the bill had already been paid. Seeing my surprise, the waitress pointed to the blonde. I went to her table and thanked her for the kindness. She proceeded to tell me how my son captivated her as we passed her table. We exchanged emails.

I received this email from her the next day. “I saw everything that was important in his eyes when he first looked at me and I have never experienced anything like that in my 48 years. I was supposed to meet Samuel and when he left, I had something from him….courage. I have been afraid of making changes, taking initiatives, loving, and the list goes on. I was up all night thinking about what you had said to me and reflecting on the look I received from Samuel. It may sound a little nutty, but he is the angel I desperately needed to meet.”

I treasure how my son moves the hearts of those he meets. As our son continues to grow, very slowly, we’ll continue to receive a variety of reactions from the public.  And as we do, we’ll continue to share our miracle, and hopefully he’ll continue to inspire others.

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