The Moment I Realized My Son Is My Hero

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It was just an ordinary conversation.

My son, Howie, and I were in the car. It was just the two of us, on our way home from working at the sensory gym. As is our usual routine, my husband, Tim, picked up the other two boys and took them home for dinner, and Howie stayed with me to finish his homework and play.

While driving, I started talking about the new skating rink that opened up in our town and asked him if he thought he’d like to take lessons.

“Oh yes!” he said excitedly.

“They have special lesson times set aside for kids with sensory issues. Do you think you’d like that?”

We haven’t had the whole “autism” talk yet. Or the partial talk. Or whatever it will end up being. For now, we’re at “sensory issues.” Because for Howie, that’s the most tangible and easiest for him to understand, both at school and home.

“Yes. That sounds good.”

There was a pause.

“Hey, Mom. Are there some kids who don’t have sensory needs?”

I took a minute to gather my thoughts.

“Well, I think everyone has some things that bother their senses. Some people have learned to work through it so it doesn’t bother them as much as others. I’m sure there are kids in your class who have sensory issues that really bother them and some who do not.”

I looked in the rearview mirror, and I could see him trying to process that.

“Do grownups have sensory issues?”

“Yes, absolutely. I do.”

“You do?”  You could hear the surprise in his voice.

“Yup. I am not a fan of socks, for example. And I really hate any clothing touching my neck. Like scarves. Or turtlenecks. But a lot of times, grownups learn what makes their senses unhappy so they don’t get into the situations that make them uncomfortable.”

“What’s a turtleneck?”

I explained what it was, realizing that no one in our family wears anything like that.

“Hmmm. I think I would like a turtleneck. My neck gets very cold all the time. Do you think you could buy me one?”

It took me a minute to figure out that I had projected many of my own sensory issues on my kids.  No turtlenecks or scarves. No wool or chenille. When I cook, it’s bland. I never really stopped to think if my kids needed scarves or liked spicy food or could touch a cotton ball.

“Well sure, you can have a turtleneck. I’ll get you one and you can see if you like it.”

“Can I have earmuffs too? My ears get really cold.”

I cringed at the thought of anything on my ears. “Of course. Earmuffs too.”

“Mom. Do you have any other sensory issues?”

One glance in the mirror and I knew he was completely engaged in this conversation. More so than any other conversation this week. He had been so… off these days. A lot of stimming. Difficulty focusing. Engine running at full speed.

I knew I had this one time now, in the car, to connect.

“I do,” I said. “I really hate big stores. Like Wal-Mart. I get very uncomfortable in them.   feel like my skin is moving and I get very fidgety. So as a grownup, I have learned not to go into stores like Wal-Mart.”

Another pause. And then…

“I think I figured it out, Mom. I think you’re afraid that you’ll get lost in there.”

I breathed in a bit. I had never thought about it like that. Big store, short person. My claustrophobia and fear of not being able to get out. It’s why I avoid haunted houses, corn mazes, and apparently, big box stores.

“You know, Howie, I think you’re right. I think I am worried that I won’t find my way out.”

It got very quiet in the back of the car.

I figured I had lost him. Another glance in the mirror and I could see he was staring out the window into the dark.

“Mom, can we go to Wal-Mart some time? Just you and me?”

I gulped, wondering where this was going. “Why?”

“Can we go there and not buy anything? Is that legal?”

I laughed. “Yes, of course it’s legal. It’s window shopping, remember?”

I took a moment. “But why do you want to go to Wal-Mart?”

“I want to go with you. It’s time to face your fears.”

Face Your Fears. Said with emphasis. Like a coach. 

Or a superhero.

My eyes welled up. “You would do that with me?”

“I would. I would say, ‘It’s just a huge store.’”

I had stopped at a light. I turned around to face him.

His grin lit up the car.

“Thank you, sweetie. I would really like that. You’d do that for me?”

“I would.”

We pulled into our driveway. I helped him out of the car and gathered up all of our stuff.

“I really appreciate that you would help me face my fears,” I said. “Do you have any fears that I could help you with?

Without skipping a beat he said “Nope. I am not afraid of anything.”

And he went into the house.

An ordinary conversation turned extraordinary.

My hero.

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 This post originally appeared on Try Defying Gravity.

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To Any Parent Nervous About Having a Baby With Down Syndrome, This Is for You

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A group of families affected by Down syndrome found a beautiful way to put future parents at ease.

Carolyn McDiarmid, 44, from Victoria, Australia, grew up across the street from the family of a little girl with Down syndrome. She later had a close friend in nursing school in Melbourne who had a child, named Harvey, with an extra chromosome. None of this, however, prepared her for the shock of finding out that the child she was carrying also had Down syndrome.

Carolyn McDiarmid and her son Clem
Carolyn McDiarmid and her son, Clem. Photo by Justin Ridler.

McDiarmid grieved for the loss of the child she expected to have and even considered aborting the baby. However, when her son was born, everything changed.

“The fear and the despair lifted,” she told The Mighty in an email. “He was just this beautiful baby who relied on me like my other boys. When I looked into his eyes, I knew it was going to be OK.”

Just a few months later, McDiarmid’s good friend, Angela Blakston, became pregnant and early scans showed she had a high possibility of having a baby with Down syndrome.

The two women shared their experiences with one another and quickly decided they wanted to help other people share their stories as well.

An American publication called “Gifts: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” first inspired McDiarmid. She would stay awake all night reading it and decided they would make a version featuring families in Australia and New Zealand.

They set up a website and contacted all the Down syndrome associations in Australia and New Zealand to put a callout for story submissions.

Replies poured in, and the women picked the best ones and those that showed a diversity of experiences. They also raised $20,000 to publish the book, and on World Down Syndrome Day in 2014, “Now I See” was released.

Check out some quotes from the book participants below. All photographs are by Justin Ridler.

“Caoimhe leaves me notes scattered like wind-blown petals, declaring love.”

Kathy Evans with Caoimhe
Kathy Evans with Caoimhe. Photo by Justin Ridler.

“I thank Kimba for the gift she gave me to understand that sometimes different is a very wonderful thing.”

 “Early on, a wise person said to me that we shouldn’t change our life plans because of Down syndrome, but I didn’t believe them. Now, I do.”

 “We aren’t special, but we are different, because we have Perri in our family to remind us of what is important.”

 “We will always be in Tiana’s corner.”

 “Andy taught us so much: patience, understanding, the ability to go with the flow and to not worry about the things that don’t matter.”

“Phoebe has made a difference to so many family members and friends because of her beautiful nature and attitude to life.”

 “An important thing we have learned from Claudia: disability is only a word for some people without it.”

Craig, Janet & Claudia Coulson
Craig, Janet & Claudia Coulson. Photo by Justin Ridler.

“Now I See” is a non-profit project where all book proceeds are used to print more books to give to new parents and health professionals for free.

“I hope that it gets into the waiting rooms of women’s ultrasound clinics. I hope that parents who are given an antenatal diagnosis get the opportunity to read some of it before making any decisions,” McDiarmid told The Mighty. “I hope that it can provide hope, encouragement and reassurance to families embarking on this rich journey.”

So far, the response to the book has been overwhelmingly positive. The Association for Children with a Disability and the Down Syndrome Association of Australia were both supportive. Down Syndrome Australia recently purchased enough copies to put in their new parent packs.

“If this book can help just one family, we have accomplished what we set out to achieve,” McDiarmid said.

Photography by Justin Ridler.
For more information, or to donate please visit the website

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12 Ways to Keep Your Marriage Strong When You Have a Child With Autism

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I often hear how the divorce rate in autism households is supposed to be astronomical (which really isn’t true) and that many spouses can’t handle the stress of living with autism, and bail out.

But hey, I’ve got an 11-year-old with severe nonverbal autism (our only child) and a healthy relationship with my spouse — so I thought I’d share what keeps my marriage strong and sane.

1) Have an “us against the world” mentality.

You and your spouse are both in this together. The rest of your life is probably gonna be a roller coaster of ups and downs… but guess what? A roller coaster is a lot more fun when you’re sitting next to your best friend. And when you come up against battles along the way with doctors, school districts, family members, lawyers, etc., it’s so much easier to have a teammate, a partner by your side. Also, you don’t always have to agree with each other on every course of action when it comes to your ASD kid, but in public it helps to have a strong united front.

2) Have date nights out of the house as often as humanly possible (a.k.a. It’s OK to be selfish).

I can’t stress this enough to all parents but especially to ASD parents. Before you had kids you were a fun vivacious couple, right? Why does that need to change? OK, when you are down in the trenches cleaning poop off the wall you don’t feel vivacious, but the wife and I try to get out together without our kid at least twice a month… sometimes it’s just dinner and a movie; other times we will meet friends out for drinks or go see a concert… Whatever works for you. I wrote in another blog post about the importance of being selfish.

And sometimes if you can’t afford a sitter you need to be ultra selfish and guilt your family into babysitting by any means necessary. There are some months where we considered getting out for a date night an emergency situation, and we tell the family accordingly.

3) Make room for sex.

Yes, the autism is going to affect your love life big time. But there’s gotta be room for it once in while, right? It may not always be the most romantic kind. We often have a lot of wheeling and dealing and negotiating going on, but it’s worth it. And if you can swing it, for us, there’s sometimes nothing better than using a sick day every couple of months (when you’re not actually sick)… and your kid is in school… if you know what I mean…

4) Get a better sense of humor… quickly.

Life’s gonna really suck sometimes. Your kid is gonna do the craziest things! But if you can just twist it on its head sometimes and look at things and see how bizarrely comical they are, it can really help. I mean, my kid is licking the window! That’s freaking bizarre — and funny!

“Does it taste good?” The wife and I have a warped un-PC sense of humor. We curse like sailors and say to anyone who will listen that we will be thrilled if Kyle’s first words are, “What is wrong with you motherf–kers?” I really feel that our warped sense of humor helps us get through some of the dark times quicker than most.

5) Feel better by any means necessary (a.k.a. “Antidepressants” is not a dirty word).

Really, no explanation necessary… Two years ago I finally bit the bullet and realized that I was kinda depressed and asked for help. And the help came in a little pill called “Wellbutrin.” For me, it did exactly what I needed it to do. It gave me more energy, more patience and let me roll with the punches better. I am still me, but a calmer, less intense, slightly more organized me. My wife went on it about six months later, and it has helped us both immensely. I wrote a separate blog post all about this that goes into a lot more details about my experiences on Wellbutrin.

6) Have solo activities that recharge your batteries.

If you can’t get out as a couple as much as you’d like with the help of sitters, then at least make sure that you each have individual non-autism activities that you can do alone or with friends that will recharge your batteries. I like to run and belong to a running group, and once or twice a year I’ll sneak away with some friends for an overnight running adventure (marathon or relay) in another city. I’m also on my company bowling team. My wife has several different groups of mommy friends, and they are often going out for dinner, drinks, dancing, etc. Encourage your spouse and give her the opportunity to take a break away from autism… and a break away from you as much as possible.

7) Readjust your priorities.

Many men feel like being the provider Monday through Friday is JOB #1, and then spending the weekend doing manly weekend work (yard work, repairs, etc.) as JOB #2. They’re therefore not present for a lot of their kids lives/activities. Maybe an adjustment is in order. Maybe skipping the yard work one Saturday and going with the family to special needs gymnastics is more important and would be more helpful to your spouse.

For moms who have Type A personalities — vacuuming and ironing every day isn’t as important as spending more time with your family. Also for you moms that need to have everything a certain way, you may be pushing your spouse away. So what if your hubby puts your kid in mismatched socks or in wrinkled jeans? At least he’s involved and helping getting the kid dressed!

Just two small examples of readjusting your priorities but there are tons of others…

8) Live in the moment. Try not to look too far behind or too far ahead.

Easier said than done, but oh so important. Try to live each day as it happens. Try hard not to compare it to what happened yesterday or what may happen down the road. ASD kids make progress, ASD kids regress. What your kid did yesterday, he might not do today and vice-versa. Also looking too far ahead can get you in a funk. Will your kid be self-sufficient as an adult? Will he need constant care? Looking too far ahead can destroy you and your marriage. Yes, you need to plan for it financially and mentally, but dwelling on it is deadly.

9) Get rid of the “what ifs,” the “blame game” and the “grass is always greener” syndrome as soon as possible.

I still have problems with this one… Not the blame game so much. There’s no one to blame for my kid’s autism — especially not my spouse. But I often get bogged down in the what ifs (What if I had a typical kid? Would he love watching baseball with me?). And I still have a problem with the grass is always greener syndrome.

10) Yell, scream, have fights with your spouse.

Get it all out right then and there when you are mad about something. It is much healthier than letting it stew and then giving them the silent treatment.

11) Get your ASD kid and yourselves as much sleep as possible.

Your kid not getting enough sleep and being up all night is tortuous for all involved. This may be controversial, but I would say to do whatever you can, as early as you can to get your kid on a normal sleep schedule, and when it’s age-appropriate explore the supplement melatonin (a complete lifesaver for us) and if necessary stronger sleep-aids. Sleep is important for your kids, and it’s important for your sanity and for your marriage.

12) Get off the Internet and sit on the couch and watch TV with your spouse.

You successfully got your kid to sleep. Now get off the Internet. Stop researching that latest GFCF recipe. Stop Googling all things autism. Stop trolling Facebook. Stop reading Autism Daddy. Turn off the computer and veg out on the couch and watch TV with your spouse. Or better yet get, go to bed… And get some sleep…or even better yet have some sex…

This post originally appeared on Autism Daddy.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What Makes These Wedding Photos Special Is the Story Behind Them

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When I came across the wedding photos below on Style Me Pretty, I knew I wanted to feature them on The Mighty. To me, they perfectly represent “in sickness and in health.” So does the story behind them.

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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography

Hollie and Adam Caldwell met in 2009 in Thousand Oaks, California, while Adam was being treated in for what doctors thought was Lyme disease. Hollie was his nurse. By the time Adam was diagnosed with amyotrophic lateral sclerosis (ALS or “Lou Gehrig’s disease), the two had fallen for each other. He proposed to her on the spot, and the couple was married on May 6, 2012. (All photographs are by Liz Wang Photography.)

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Timon & Liz Wang / Liz Wang Photography

As Adam’s symptoms progressed, Hollie took on the role of wife and primary caretaker.

“I was his arms and legs,” she told me in an email. “I transferred him from bed to chair, dressed him, bathed him, fed him, brushed his teeth, cut his hair, combed his hair.”

On October 10, 2013 — 4 years after onset symptoms — Adam passed away. But when photos of the two are still shared online, Hollie hopes for two things: that they’ll make people believe in true love and they’ll reveal the joy that Adam possessed, even as the ALS crept on.

“We got through tough days with humor and love,” Hollie said. “Adam was always cracking jokes, even when he could barely speak. He also painstakingly wrote poems with the one finger he could still use to press a key on the keyboard.”

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Timon & Liz Wang / Liz Wang Photography

Photographers Timon and Liz Wang didn’t know much about ALS when they agreed to shoot Hollie and Adam’s wedding. After meeting with the couple six months before the ceremony, Timon began researching the debilitating disease and realized its gravity.

“I was so inspired to shoot because I knew I was freezing a moment in time that the two would always have,” Timon told me in an email, “and that my photos would be the memories even when all other memories had begun to fade.”

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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography
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Timon & Liz Wang / Liz Wang Photography

If you’d like to make a donation towards ALS research, Hollie suggests ALS Guardian Angels or ALS TDI. You should also read Hollie’s statement on Style Me Pretty, where you can find even more beautiful wedding photos.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Pet Shop Owner Didn’t ‘Get’ My Daughter With Special Needs

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I usually shop at one pet shop. The owner is awesome. She is kind, caring and supportive in the community. This one day I was in a rush and knew I wouldn’t make it to her shop in time to pick up what I needed and get to my 5-year-old daughter’s school for pick-up. So, I hesitantly went to a closer pet shop instead. I felt so guilty, like I was cheating on the good pet shop. But, knew it was an act of Mommy-survival. I needed to pick up two Betta fish to donate to my daughter’s school for the classroom. I was in a time-crunch.

I had my 3-year-old with me, as she had just gotten off the bus from her autistic Pre-K class. She was, as I like to say, “all fired up” —  happy, wild, a mile-a-minute, non-stop chatter, singing and repeating in the car. We got to the pet shop, and I told her what we would do, as I’ve found routine and patterns are key. I said, “Stroller, pick up fish, get your sister.” I said stroller first to prepare her for sitting to be strapped in the stroller. This is so she wouldn’t run away. She looked at me and said, “Fishies?!” I said yes. I said the pattern again: “Stroller, pick up fish, get your sister.” I got the stroller and she went right in – she was intrigued by where we were, as we haven’t been here before. (She knows the other pet store well.)

This pet store was different: Spotless, fancy; it had a candle burning, and it even had homemade dog gourmet treats to buy. The pet store we normally go to is free-to-be. It’s laid back, and the owner’s cat roams the place.

Once we were inside this posh place, I found the fish, and we picked two. Betta fish are so pretty. I let my daughter pick the fish, and she did so by color: “Blue and red.” Simple and easy enough. Or so I thought.

beta fish (1) Betta fish are deceiving. So pretty on the outside. So fancy. But put one in tank or bowl with another Betta fish, and they will fight until one of them dies. Not. Very. Nice.

I put the Betta fish on the counter to purchase, and next to the register was a bird cage. The bird  inside of it was carrying on. My daughter was scared and fascinated all at once. She didn’t like the bird making that noise and told the bird how she felt: “No, bird!” “No, bird!” “Stop!” She then did these brief yells at the cage as if it would make the bird stop  chattering. The owner came to the register and said — appalled — directly to my daughter with her finger pointed out, “No! You can’t do that! You will kill her! She could have a heart attack or a stroke! You can’t scare birds like that, now please stop it!” I was immediately annoyed. Do I have to get into a fish bowl with you, lady? Because I’m suddenly feeling like our friends “Blue” and “Red” here.

I immediately shifted my tune because of my daughter’s response. She just yelled louder, which was at the moment, comical to me, because she knew this lady didn’t “get” her. I said to the woman, “My daughter doesn’t understand a word you’re saying to her. She has special needs. She isn’t doing any of this to intentionally hurt your bird. I promise you. If you can ring us up, we’ll be out of here.”

She then said, “Really? She doesn’t look sick. She’s beautiful. She doesn’t look at all like a special needs child. She looks fine! She talking and  looking right at me!”

Now I’m really getting all Betta…

I hear this all of the time, and it’s so offensive. I know that people mean no harm but what exactly does a special needs child look like? Are they supposed to not be cute? Are all autistic children exactly the same? It kills me when people say this. Kills me.

She then said, “The bunny behind you is really tough, nothing bothers it, if you want to put her in front of the bunny yelling instead.”

At this point, I’m just completely entertained by this whole experience. The woman then started to talk low and soft to me, as if she is trying to console me and keep my secret.

“You’re daughter is just so beautiful. What’s wrong with her exactly? I will pray for her.”

I asked the woman how much the fish are and paid her. She gave me an informational sheet on her store and said to “Like her store on Facebook.” (Oh. My. Goodness.) Behind me I heard my daughter talking to the bunny. It was really funny. She threw her blankie at the cage, and the bunny was just staring at her. What no one realized was that my daughter was actually being sweet. Giving her blanket to any person or animal means she likes you. She was trying to give the bunny her blankie.

addie pic (1)

I turned to my daughter and said, “Ready to get your sister?” and she screamed in delight “Yea! Sisters!”

The owner than said to me, “Now remember, those Betta fish can’t be together in the same bowl.”

I had to bite my tongue as I wanted to say to her, “Neither can you and I, sweetheart. Neither can you and I.” But I nodded my head and smiled and walked out past a lit candle ironically named: “Peace.”

This taught me two good lessons: 1. There are a lot people who still need to learn about special needs children and families and 2. Only shop at the pet store with nice lady and free-to-roam cats…

Lesson learned.

This post originally appeared on Addie’s 4Ever Friend.

Read more from Samantha Gill on The Mighty:
Why I Let My Daughter Rearrange the Chairs in the Waiting Room

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Why I Let My Daughter Rearrange the Chairs in the Waiting Room

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chairs Addie was on her third artistic chair arrangement. Chair arranging is a specialty of sorts. The most important element is the purple chair. There must be purple chair(s). Plural. We hit the purple-jackpot this fine Friday. When the elevator opened, the heavens sang and the trumpets played and her eyes grew wide: “Mommy! Purple!” she declared! Yes. Yes. Purple indeed. A sea of not only adult purple chairs but alas, little people purple chairs in the waiting room. There. Is. A. God.

I checked Addie in and by the time I turned around she had Houdini’d out of the stroller and was already on task. Let the art begin. She started to do the sign for “more.” Addie is all words and doesn’t need to sign anymore. She is verbal beyond verbal. But when she is excited, nervous, etc., I will see her over-do the sign for “more.” This time, she was totally doing this.

She was very happy with this situation. She began her first arrangement. I sat and watched. Literally I sat back and watched. I didn’t stop her. We were in the waiting room at the Behavioral Doctor at the Children’s Hospital of Philadelphia (CHOP). There weren’t many people there in the waiting room. Addie wasn’t running from me. She wasn’t screaming. She was focused and moving chairs. And I simply let her.

Many people would have a problem with this. As a matter of fact, I took a picture of her work of art and someone that I texted it to actually did have a problem with it. I’m sure a lot of folks have a lot of thoughts about what I do and don’t do. When I received the doubting text back that read, “Are you sure you want her to do that?” I put my phone away and wasn’t mad at the person. I was mad at myself for sharing.

Addie was working on masterpiece #3 when a doctor called another family back. The mom gathered her two children, and Addie thought she was now a part of this group so she followed. I quickly reminded her that she was a part of my group, and as I went to get her, the little boy came up to me and shook my hand and hugged me and started getting very emotional and talking very fast. The mom became very embarrassed and started to apologize. I was so confused — not because of what the boy was doing but what the mom was doing. Why was she apologizing to me? We are at the behavioral doctor’s office. Was she so conditioned to apologize that she forgot? I looked at her bewildered, then softly said, “Hey… stop… we’re in this together… We’re strangers but teammates. It’s all OK. Really. He is totally OK. I am totally OK. Really.” She was still upset, and took him back.

I went back to “Stonehenge: The Purple Chair Edition” to find Addie now crawling through it but only touching the purple parts. I thought, “How clever.” If there is one thing my child is, and she is many things – she is clever. She is a problem solver. She can get what she needs and wants. I am very impressed. When her name is called, her doctor actually comes out to get her. He knows her well. He comes out to find her design. He smiles at her and looks at it and says, “Wow! Quite a project! She is very smart.” We all agree. All three of us clean it up, and the appointment begins.

After the appointment I am frantically chasing my little one all over as she is suddenly on the Tour de France. She is fast. Once I catch her and my breath, I run literally right into the mom I encountered at the very beginning of this appointment. I apologize and pray I didn’t break her nose or any body part. She and I are intact. (Thank you, again, God.) Ironically her son is running away from her, and she lets him. We laugh at this, and then she says to me, “I am so glad I saw you again, I just want you to know that my son is very smart. He is high-functioning. He may even go into a normal classroom and then into kindergarten. He may come out of this. He is really doing so great. He is really smart.”

I couldn’t believe it. All I could do was what I knew best and that was to hug this woman, so I did. I said nothing because I really was speechless. She looked so tired and actually more upset than she did before the appointment. There was so much I wanted to say to her but I couldn’t, so we went our separate ways. We got onto two separate elevators — separate elevators with two bright, smart, adorable children both with bright futures ahead of them. We were both exiting the elevators as mommies who want nothing but the best for our kids… Yet, we both doubt ourselves… we doubt our value in different ways. Neither one of us is right. Neither one of us is wrong. Neither of us has the answers. Neither one of us knows if what we’re doing is right. One of us is frantically running after their child and one of us is watching as their child runs away.

On the car ride home, I think. I press the “Chapter One” button over and over so Addie can hear and watch her favorite part repeatedly on her favorite DVD. Each time I press that button, I press a button in myself that asks the question – “What am I doubting? Why am I letting people doubt me?” I find myself driving and talking to God while I drive. I am asking Him this question.

I get a lot of feedback from people. And by people I mean everyone: friends, family, coworkers and sometimes people I don’t even know. People mean so well — they really do. I have found that people struggle most with my level of acceptance of Addie’s diagnoses. The more comfortable I am with it, talking about it, living it — I have actually found that I have become more isolated. The better she has done, the farther she comes, the more some people struggle with it as well. It’s an odd situation.

Sometimes the feedback is through silence. People I care the most about just stop contacting me. Sometimes people can only text or email me. Sometimes people just fade away. Other times, people constantly challenge and question me… like today with “Stonehenge.” Again, that person meant so well, but I find myself saying:

“What do I do? Am I doing something wrong? Am I wrong for just accepting things as they are today and living in the now?”And by this I don’t mean being impulsive. By “right now” I mean right now. I am working our tushies off in therapy after therapy after therapy. Right now we are going to doctor after doctor to insure she gets everything she needs to succeed. Right now I am making sure she gets all her weekly medications filled and weekly therapies organized on the calendar. Right now we are two months away from meeting her service dog we’ve worked so hard to make a realization. I mean, I really can’t think ahead. I really can’t think behind as far as this situation is concerned. I just want work really hard on the now and at times that means sitting back and watching purple chairs being constructed into Stonehenge. Is Stonehenge that bad?! I mean God… can you help me here? Help me.”

With that, my cell phone goes off: Ding! Since I am driving I can’t look at it. But the noise — Ding! — tells me that I have a message on my Facebook page. When we get home and I am in the driveway I look at my cell phone and would you believe there is a message from my childhood friend and neighbor? She was the one who emailed me while I was driving. It read, “Hey Sam, I was in the area today where we grew up, and I drove past your childhood home – you wouldn’t believe how much it’s changed! I took a picture of it with my cell phone. You’ll barely recognize it except for one thing – the big white rock that you guys always had out front is still there! It never moved! It stayed strong! Love ya!”

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Oh. My. Well hello, God. I do believe you were sending me a sign. And I do believe I heard you, sir. As a child we had this huge – I mean huge – rock at the end of our driveway. We painted it white, and we could sit on it. My parents hand-painted our last name on it and our house number. It was so big it wasn’t movable. It’s still there.

So maybe that is the point. I am to stay strong. I am to be myself. As Aslan said in “The Lion, The Witch and The Wardrobe,” “You doubt your value; don’t run from who you are.” Some things may change – time, age, houses, places, but our values, what we believe in and who we are, we must remain true to — this includes purple chairs in waiting rooms that very beautifully, to this Mommy, resemble art.

This post originally appeared on Addie’s 4Ever Friend.

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