Why I Felt 'Love at First Sight' Meeting a Baby With Cri du Chat Syndrome

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I knew she existed.

A friend sent me a note a month or so ago, telling me a little girl was born in a city near us.  I don’t get notes every time a child is born near us! But this little girl is like my Emily, now 17. She was diagnosed with cri du chat syndrome within a couple of weeks of being born.

I didn’t try to find her, I didn’t research her parents. I figured we would cross paths soon enough.

Last week, I received a message on our Facebook page from Katherine, her mom. We talked for a bit and lucky for us, she told me she would be in our city this weekend. We picked a time and place to meet.

When they arrived we said hello, introduced ourselves and before long we were like old friends. Even the dads were chatting.

I like seeing babies, but I don’t hold them. I think I have held or tried to hold some of my nephews, but that’s about it. Unless a friend literally puts their baby in my arms, I will just look at the baby, talk with the baby, but I don’t hold them. I don’t know what to do with babies. I am awkward with them. I know this sounds rather silly, as I am a mom and I have done all the baby stuff with my girl, but it’s just not really working for me and other babies. The babies are cute and smell good, but they are not like Emily was…

At least until I met this cutie pie!

baby girl dressed in hot pink outfit
Pascale’s friend’s daughter.

It was love at first sight!

I think I had her in my arms within seconds of introducing ourselves. I didn’t even think about it when her mom asked if I wanted to hold her. It felt natural; that must be what other moms feel when they hold babies.

mother holding newborn baby
Pascale with baby Emily.

The tiny girl made some noises, fussed a little and it sent me back 17 years ago. Her mom said she vomited a little earlier, which is why they were late, and I could relate. She sounded like Emily, she felt like I remember Emily did. She moved a bit in my arms, then found a position she liked. She was rubbing her nose on me, and that meant the world to me. Emily used to do that.

All those little things, they were my “normal.”  She reminded me of my Emily, my baby!

Love at first sight!

Follow this journey on Lessons from My Daughter.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When My Best Friend Taught Me About Optimism During a Snowstorm

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All my life I’ve been a pessimist , always worrying about the Here and Now, worrying about the small things in life, wishing things were different, wishing I didn’t have a disability. I have always seen the glass half empty and let every little thing bug me.

When I met my friend Bill, I was amazed at his overall take on the world, despite it not being easily accessible due to his cerebral palsy. He always takes our adventures with a laugh and a joke, while I look at the world as a depressing and often confusing place.

bill and mandy smiling

When we first started going on adventures on our own, it was around Christmas time, and the children’s museum I worked at had a grand opening gala for an exhibit I helped build. He loved seeing where I worked and was excited to meet my fellow coworkers.

We left a little early, as it was starting to snow outside. It was dark, and the roads and sidewalks were getting covered fast. One of the streetlights in the parking lot was blown, which made it hard to see the curb. And almost like a movie in slow motion, there went Bill’s chair as it tipped over into the empty street.

I was in complete shock, in tears thinking I’d hurt my best friend.

Then I heard laughter from below.

Despite an an abrasion on his hand and his little glass bottle of Coke from the gala shattered around him, he was the ground, laughing.

“That was fun! Let’s do it again!”

Two guys from the bar nearby came up and helped him off the ground and brushed the snow off him. They looked at me and one of them said, “Relax, he’s fine.”

As the gentleman walked away, Bill, with his sarcastic sense of humor, looked at me and said, “You remember when you first saw me in my chair and asked why it had a seatbelt? Well, now you know.”

He gave me a hug, and we laughed on our walk back to catch our ride.

That day recently came into mind as I’ve been dealing with a multitude of issues of my own. I spent many days worrying about what the world treats me as and not about the reality — that my limitations shouldn’t damper my ability to be optimistic. In times like these, I think about Bill lying in the ground, tipped over, laughing at his situation and, like the snow that covered him, brushing it off.

Needless to say, I want to be more like him.

And I’m hoping one day, and soon, I will be.

Follow this journey on Legally Blind Bagged.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To My 3-Year-Old Daughter Without ADHD

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To My Sweet Daughter,

You are only 3 years old and are so incredibly independent and self-sufficient. Instead of asking me to get you a cup of water, you get it yourself and do it without spilling. In the morning, you don’t put up a fight when I tell you it’s time to get dressed and go to school. Instead, you get dressed all by yourself and are happy and excited to start the day. Thank you for always being my sunshine!

I love playing tag with you, and I love playing store with you. You are so fun to be around and have such a wild imagination! I wish I could play with you more, but your big sister needs me. She may be 3 years older than you, but she has ADHD, and in some ways, that makes her different than you. Not worse. Not better. Just different.

little girl smiling

As smart as your sister is, she needs me right next to her the entire time while she’s doing her homework. She needs me there to help keep her on task and focused. When she starts to have a meltdown because she is having a difficult time with her math, she needs me there to encourage her and help build her confidence. I know you want to be in the room with us, but your presence distracts your sister. Thank you for understanding that and for quietly playing outside the room so your sister can do her homework without any distractions.

I know I let you watch TV or play on the iPad more than a child should to keep you busy and quiet while your sister is doing her homework. Although this is something I know you enjoy, you have no idea how guilty it makes me feel. It should be me, your mother, playing with you and teaching you new things, but I haven’t quite mastered being in two places at once yet.

You must feel like Daddy and I spend more time with your sister than we do with you. The truth of the matter is we probably do, but it’s not because we love her more or favor her over you. We love you both very, very much, and we would go to the moon and back for you girls. You must know that. Sometimes, your sister just needs extra help, support and guidance.

This family is a team, and I know you know this because I see you helping your sister when you can. Thank you for complimenting your sister on her drawings and for telling her she looks pretty in her new outfit. Thank you for getting excited to see her when we pick her up from school and for giving her those great big bear hugs. Although your sister may act like she doesn’t appreciate it sometimes, I assure you she does. She needs you in her life because you show her how she is admired and loved. When you become a mother, you will know just how much moments like those warm my heart.

Your sister has a very outgoing personality. She moves around when she isn’t supposed to, like when she gets off her seat at restaurants and wants to run around the table. This causes her to be the center of attention a lot. It’s no wonder you love your ballet class so much. It’s the one place you know for sure you will always be the center of attention and all eyes will be on you.

Believe it or not, Mommy is not a parenting expert. Honestly, I don’t know what I’m doing a lot of the time. All I know is I don’t want you to feel like you are second. I want you and your sister to always feel like you are both first. I love you and I appreciate you. Mommy promises to try her best to show you that each and every day. Thank you for being my special little girl and for making our family and our lives complete. As small as you are, you’re making such a positive influence in your sister’s life, and I will forever be grateful for that.

All My Love,

Mommy

Follow this journey on My Little Villagers.

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What I Fear Most When It Comes to My Lupus

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It’s been almost two months since my lupus diagnosis.

That means I’ve had two months to process everything and to let it sink in. That is two months to finally let go of this grim diagnosis and to allow myself the chance to live, despite this setback. It’s been two months and I’ve had enough time to grieve and it’s time to move on.

But for some reason, I just couldn’t.

It was a lingering thought in the back of my mind. A small voice that whispered “lupus” over and over. I tried so desperately for weeks to try to move past it by Googling information about it — and ended up finding stuff that upset me more. Things about lupus like: “one of the most mysterious, devastating and cruelest diseases,” “contributing to cancer,” or my personal favorite, “the leading cause of stroke-related death in women.”

And for a while, I thought I wasn’t able to move on because I was so afraid of dying. I’d spent so much time afraid that this would be my demise that I had myself convinced I was selfishly holding onto this diagnosis because I was afraid of dying and not being able to fully live my life. I’d become obsessed with the fact that I potentially could lose my chance of being someone “normal.”

So in this constant state of self-pitying, I see a counselor to help with my grief.

And as I was waiting in the waiting room before my most recent appointment, a boy talked to me.

He was about my age; however, he was much younger than he appeared to me. He saw my glasses and informed me that he needed some. We had a brief conversation while his mother tried to hurry him along. She seemed concerned that he was bothering me. She relaxed, however, when she saw that the conversation was mutual. He told me his name and asked for mine. He asked me never to forget him.

His mother smiled at me as he ended the conversation — a sign of appreciation from someone who has probably seen reactions not-quite-so-welcoming of her son’s open nature. As they left, my spirit was so lifted. I was so incredibly happy.

So when I saw my counselor, we walked through things that made me happy.

I told her about the brief encounter with the boy in the waiting room.

We talked about a little boy with a processing disorder who came into my work asking for a T-shirt to be made with his favorite cartoon character on it. A little boy who I was so glad to help — who gladly talked me through the different colors for the shirt and gave me a lesson on how to spell his name. Someone who was glad to write out all the paperwork for me because he was so proud he could.

We talked about the Instagram accounts of children with special needs who I follow and how they brighten my day with their personalities and smiling faces. The little girls with big personalities and curled eyelashes who sing while standing on tables, those little faces that brighten my days simply with their demeanor.

We talked at length about how excited I was to work with children with special needs one day. We talked about how I was incredibly thrilled to be given the chance to spend my life helping theirs. That’s, however, when I broke down. I expressed that I had a fear of dying before I could fulfill this dream.

And now I realize it wasn’t so much merely a fear of dying, but instead a fear of dying before I could help others.

I recalled I’d become obsessed with the idea of service projects. I’d become obsessed with finding ways to help others and to involve myself. I’d researched service groups at the university I’m attending. I’ve been trying to figure out different ways to help people, even in the smallest of ways. I want so badly to make some kind of impact, so much so that very recently, I’d become interested in the concept of creating crocheted stuffed animals to donate to children’s hospitals or fire stations. Small, small things.

Because now I realize I’m afraid of never making the impact I’m convinced I’m meant to.

I’ve set my heart on working with kids with special needs, people who had traumatic brain injuries, and survivors of abusive situations. I want to help others achieve the lives they are meant to, so badly. And with this lupus, I’m afraid that somehow it’s going to stop me.

I don’t want fame. I don’t want to make tons of money. I want to see a child survivor of abuse blossom out of their shell with a new family. I want to see a brain injury patient smile again or hold a conversation because of months of practice. I want the tears and hours of moving through obstacles to achieve a goal that is monumental for someone. I want that insurmountable joy when something goes right.

I want to go to graduate school to work myself tirelessly to obtain a doctorate to be able to work with those who may need me most. I want the debt. I want the hours of studying and the tests that seem impassable.

I want to be able to say that I reached my own goal of helping others get to theirs, but right now, I’m scared lupus will be my own obstacle to get over.

The only thing is, when I think about that boy in the waiting room, or I read about children who’ve been given a second chance at life by a doctor who believed in them… I know I need to be that kind of advocate. I know things are going to be tough, but something within me is begging me to persevere through it.

There is something within me that is begging me to know that I’m a future advocate for children. One day, I’m going to be the fire that lights a path for a mother who has felt helpless. I hope to be a vessel for children’s success through their obstacles.

Lupus may be my anchor, but my sails are set with the wind, and I’m ready to cut that anchor loose.

Love, passion and determination will get me where I’m going. There is no time for failure in the clock of my life.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I'm OK Being a 'Social Outcast' as a Person on the Autism Spectrum

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I don’t need to be told I’m socially inept. I know that. I have autism. I don’t mind not having many friends. I’ve gotten to this point with a few friends or none, and I’ve realized I don’t need to have lots of friends. I need one or two who truly care about me.

lottie on a boat

I know I’m difficult to get along with. A long time ago I tried to be “normal,” but it was boring, so I went back to being me! But seriously, trying to fit in was making me miserable. I was a square peg being rammed into a round hole, and the problem wasn’t that I wouldn’t fit, it was that I was being damaged in the process. I stopped trying to fit in because it wasn’t good for me. All I care about in life now is being happy; that’s what I strive towards because in the end isn’t that what we all want? Happiness?

A little while ago, I decided I will be me. I will be my unique, quirky, funny self, no questions. Take it or leave it, I won’t change for anyone. If people don’t like me then I don’t need them in my life; if they do, I will cherish them as a friend.

I am me. I am socially inept. I am funny. I am annoying. I am unique. That is never going to change. I realized that when I started to be happy again.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What Watching ‘The A Word’ Was Like as a Person With Autism

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Well, what can I say? Except that was by far the best program I have ever seen on autism. I am not great at expressing emotions, but I cried throughout certain parts of the one-hour show.

I was a bit skeptical about this show considering most of the others have been stereotypical and focused mainly on our negative traits and “fixing us,” etc., but “The A Word” was completely different from that. I was blown away, and as a person with autism I can say I am impressed and am unable to get over the brilliance of not only the storyline, but the acting, the information, and how they got the traits down to a T. I would easily watch it again right now.

I feel this program changes everything, and if you have not seen it I would highly suggest for you to find a way to watch it, as I could relate to aspects of the character Joe’s life from when I was a child. Parents have been messaging me and telling me they could relate Joe’s traits to their son or daughter, and I can easily see why.

The birthday party scenario was perfect, and it’s true that many people with autism do not get invited to birthday parties. We could send out invitations, but not receive any back. We can feel isolated from the rest of the world, and I feel this party situation (and the football situation) showcased that perfectly. The acting was not false, and I believed every minute of it.

They also focused on many of the positive traits, including intelligence, love and communication in our own special way. One particular quote I enjoyed from the show was, “A cure? It’s not a disease.” And another was how the doctor expressed that autism is not child-exclusive. She did not say that in so many words, but after mentioning all the traits do not present themselves at 5 years old, I thought it was described brilliantly.

The parents arguing, the fall-out with other family members was handled with such realism that I thought I was actually a part of the show. And the special interest with music? That’s what I could relate to the most. The need for headphones for many of us when in a crowded environment was explained well, as well as meltdowns and communicating via our special interest. When it sometimes appears like we’re ignoring you when we’re not, and instead we have difficulty processing information.

Difficulty with sleep, interacting with peers, facial expressions — all done faultlessly, and not one trait was expressed in an over the top manner, which surprised me. Usually at least one of the traits of any TV show or movie is taken to the next level so that it almost seems comical. But no, it was excellent.

I would rate the first episode of “The A Word” 10/10 for its sheer brilliance at tackling a subject so close to home, and all the actors and actresses pulled it off. It deserves an award. I can’t wait to watch and review episode two.

I would go as far as to say it has the potential to change how the general public views autism for the better. It has its negatives and positives, but that’s the reality of it. They kept it real, and damn, here come the tears again.

I believe the show will have a positive impact on the autism community because of the way they showcased the reality of how autism affects the individuals and their loved ones. It did not over-stereotype a specific trait, and they got it perfect. It had such a great impact on me personally as someone with autism because I could see myself as a child and how much I struggled. I had a strong emotional connection to Joe, and it is something that will stay with me for the rest of my life. I would recommend this show to anyone.

Bryan’s review complete, over and out! Please watch “The A Word”!

A version of this post originally appeared on the Asperger’s Syndrome Awareness — Bryan’s Advocacy Facebook page.

The Mighty is asking the following: Describe a scene or line from a show or movie that’s stuck with you through your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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