Why Our Daughter With Autism Is Everything We Dreamed She’d Be and More

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We loved you long before we ever knew you. From those early wishes and hopes for what your untold future would be, to the first beats of your heart and kicks of your feet. We made plans for you, aspiring deeply to paint a picture hand-over-hand of the future you would have, one as beautiful as the love we felt for you.

We read to you every night as you nestled deep inside my womb, uncertain if you could even hear us, but believing that you could. As we lifted the words off the page we let them be your story, written by another, but told by our hearts. We allowed ourselves to think you owned them as if they were meant for you.

We engraved those words upon your baby blanket so when you made your entrance into this world we could wrap you in their warmth and familiarity. We folded you tightly like a package, the visible corner underneath your Heaven-made face read:

           Gaze at the stars,

           and watch the moon rise.

           Each day there are miracles,

           in front of our eyes.

           Dance to the music,

           and sing like the birds.

           Let stories and books,

           bring the magic of words.

           Enjoy friendship and laughter,

           your whole life through,

           and the love that we feel,

           as we welcome you.

        My Little Miracle by J. Beck and J. Croydon

We watched you grow, and it was ever clear you marched to the beat of your own drummer. You did things your own way, in your own time and within your own expectations. There was never a dull moment within your presence. You lit up each room you entered like the Fourth of July, all eyes on you, everyone else taking a back seat. There were days we feared you would fly so high you would never come back down.

We worried when they said the you that was so special and yet so hard to read, had autism. What would that mean for all the things we wished for you? Would all of our dreams for you now be just out of reach enough to make us ache?

We watch you grow now with this invisible label you wear upon your sleeve, always shedding your layers to reveal what’s underneath — the raw, take-all-or-take-nothing you. You are this amazing force inside a pint-sized body, a constant tangle of knots we’re trying to undo. You refuse to be unwound.

We’ve overflowed with joy as you have checked off each of the dreams we had for you, one by one without even knowing it. You just love looking at the stars. You take in everything like it’s art; the sky to you is like a giant canvas, the stars small specks of paint. Music moves you, your body constantly moving to a silent symphony that plays only for you. You’ve loved books since you could hold one. The first thing we learned you loved to do was count words and letters. When you were 4 years old you told me there were 12,052 Z’s in Daddy’s chapter book. You were so proud of yourself. Words are definitely your magic, and boy do you love to laugh. Your laughter echoes through our home and down the street.  It’ss impossible not to join in.

We know you will always be uniquely you, and that is just fine. You’ve paved the way, so just continue to lead us behind you, sweet love. We didn’t even know what we wanted until we got it. It’s funny how life works out that way.

Today I realized my heart couldn’t be any more full when you approached me to give me a card you had made. You told me you had been reading your baby blanket every day and that you wanted to write me back a letter to tell me how you felt. Before I even read it I felt my emotions take away my words, no matter what your feelings were; just knowing you were willing and able to share them with me was more than I could ask for. What it said was far more than anything I could have expected:

Dear Mommy,

I am really glad that you are my Mommy.

I love you so so much.

No matter where you are I will always love you.

Love,

Me

We know you feel loved. You my love are our little miracle.

This post originally appeared on Learning to Let Go: A Different Dream for Us.

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To the Woman Who Noticed My Daughter Wearing a Make-a-Wish Shirt at the Zoo

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When my daughter, Brooklynn, was 20 months old, she had a two-hour-long seizure and was admitted to Children’s Hospital of Wisconsin. They ran tons of tests to try and figure out why she had this seizure. They also inserted a G-tube for feeding. Two months later, her doctor called and asked me to come in the next morning. She had some news. I knew there was only one test result they’d been waiting for — Alexander disease, a form of leukodystrophy.  No cure, no treatment. I was told Brooklynn would never walk or talk and to enjoy my time with her.

Alexander is a neurological disease that attacks the nerves system. Kids rarely live past 6 years old with this disease. After finding out this info, I researched everything I possibly could. The only researcher for Alexander disease I could find was in Madison, Wisconsin, only two hours from us. Suddenly, I found hope — someone out there wants to find a cure, a treatment, something.

20141224_174015 When Brooklynn turned 3, I applied to The Make-a-Wish Foundation. Her wish was to go to the San Diego Zoo; she loves animals.

In November of 2012, we went to California. We found ourselves in a beautiful place, with a few days of no worries and no doctor appointments. We just lived and did everything Brooklynn loved. On our second day there, we went to San Diego Zoo, where Brooklynn would get a behind-the-scenes tour. We arrived a bit early.

Brooklynn was wearing her Make A Wish t-shirt. As we stood there, we started talking to another family. They were super nice people, and we found out they were also from Wisconsin. They asked me what was going on with Brooklynn. I explained Alexander disease to them. You could just see their hearts drop. How could this beautiful, full-of-life child, have something so terribly wrong?

They immediately gave me a hug. Brooklynn is one of those kids everyone falls in love with. The lady who we talked with for only momnents reached in her pocket. She pulled out a $20 bill and handed it to my daughter. Brooklynn’s eyes lit up with excitement — “Money for me!”  The generosity of someone we just met made my daughter’s day. She used that $20 to buy a spray fan at the zoo. The little gestures of people go a long way.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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Would I Choose a Life With My Husband and His Disease, or One Without Him In It?

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Seventeen years ago, my husband and I sat in a neurologist and were told 1) Get power of attorney over him 2) He can no longer work at his job 3) He can no longer drive on the roads, and 4) This disease will shorten his life.

Adult Onset Metachromatic leukodystrophy at the age of 42. What in the world is that? The Internet was just beginning, and even at the medical library at Mayo Clinic, there was little information. What I remember the most was this: We were living on borrowed time.

If I could go back to that day, I would tell myself that your life will never be the same. It will be better.  You will meet new friends and experience things you can never imagine. There’s a whole world out there you know nothing about. People who you thought were your friends will shy away and disappear, but you will make new friends who will last a lifetime. Your children (all young adults) will no longer have the father they remember. Your actions will profoundly affect your grandchildren.

Take lots of pictures; make lots of memories. Share times with family as much as you can for as long as you can. Keep a journal of all the little things, and keep it up. As the years go by you won’t remember all the little things you wish you could remember.

Life will go on and you will be OK. You’re no saint, but you will get through it. Life will be different, but the people who matter the most will grow from this experience, and they will all be OK.

Early on, I used to tell people I’m where I belong. He could have been diagnosed as an infant or a child or a teen, and I would not have known him, and we would not have our two great children or our wonderful granddaughter. We had 21 good years before his diagnosis, so I’m grateful for what we had. He’s been gone for six years now, and life does go on, but it’s so different then I ever imagined.

Would I go through it all again? Yes, in a heartbeat. Would I change anything? Well I guess in hindsight there must be things I would do differently. But I believe everything happens for a reason, and we wouldn’t be who we are today if we’d done things another way.

Joe Dec 2005

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5-Year-Old Figures Out Incredibly Sweet Way to Help Cure Angelman Syndrome

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When 5-year-old Na’ama Uzan learned that part of the reason researchers had not found a cure for Angelman syndrome was because of lack of funding, she decided to take matters into her own hands.

Last summer, Na’ama, who lives in Toronto, started a lemonade stand to raise money that will go toward researching a cure for the rare neuro-genetic disorder afflicting her older brother, according to CBC news.

“My brother, Nadav, has Angelman Syndrome, so we’re trying to raise money for a cure so he won’t have it anymore,” Na’ama tells CBC News in the video below.

Na’ama’s ambitious project took off last year with incredible force. Her endeavor has prompted many others to join her, transitioning her original lemonade stand into a community-wide fundraising effort. Since Na’ama first opened her lemonade stand last June, she and her community have raised more than $19,000 that will go to the Foundation for Angelman Syndrome Therapeutics, The Canadian Jewish News reported.

Na’ama isn’t ready to stop there. She plans to resume fundraising on January 29, this time through a hot chocolate stand.

“This has turned into something so enormous,” Na’ama’s mother Ruchama Uzan said, according to The Canadian Jewish News. “When I was 5, I wasn’t doing anything like this!”

Learn more about Na’ama’s project in the adorable video below.

For more information about Na’ama’s project or to participate, please email the Uzan family [email protected] or visit their Facebook page.

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My Younger Sister Handles the ‘Big Sister’ Role. And I’m OK With That.

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I’m a huge “Frozen” fan. I mean, really, who isn’t? Anyways, back to the point of this article: sisterly love.

It’s magical and one of a kind. My sister and I are two years and two months apart. I was born first. So in chronological terms, this means I’m older than her. I’m supposed to play the older sister role, and she’s supposed to play the younger sister. This isn’t how it always works in our family.

You see, I have autism. My sister reached some developmental milestones before me. In so many ways, she’s my big sister, even though she’s younger than me. I look up to her with all my heart; she’s truly the greatest sister a girl could have.

JandI I know being my sister isn’t always an easy task. My sister was sometimes a 10-year-old girl left wondering why her 12-year-old sister won’t play makeup or let her paint my nails. She was a little girl trying to cope with and accept with the fact that her older sister sometimes seemed to be more engaged while playing a computer game. But, when I did play with her, it was glorious and fun. We played a game we called “babies” with our American Girl Dolls. The sky was the limit, and our imaginations went wild. Playing “babies” is one of my favorite childhood memories because when we played that game together, we just were two little girls playing with dolls, two sisters playing with dolls, two sisters having fun.

My sister loves me, no matter what. Through all the tears, meltdowns and screaming and rough days over the years, she’s loved me with all her heart, just as much as I love her. Through all the many times I’ve embarrassed her (because it’s inevitable), she’s some how learned to forgive me and put a smile on her face and move on.

As my sister neared finishing high school, and I was still in school, it all started to go full circle in my head. Her being my older sister was becoming even more of a reality. She has a boyfriend; I don’t. She started college — before me. In my mind, I felt like I was supposed to be doing these things first. I was supposed to be trailblazing the way for her and showing her the ropes. I was supposed to be helping her get ready for prom, not the other way around. I was supposed to be doing her hair, instead of her doing mine over and over again. She does this all for me.

I’ve come to realize, it’s OK. Really, it’s OK. Our relationship is our normal. We both love each other just the way we are. We both teach each other in so many ways. Even though I didn’t teach my sister about boys, driving or makeup, I taught her some important things about life, including acceptance, and patience.

Thank you to my sister for being such a great sister and loving me unconditionally. I love you to the moon and back.

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The Letter I Wish I Could Have Written My Parents When I Was First Diagnosed

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Dear Mommy and Daddy,

I know I may not be what you probably dreamed of, hoped for or expected. I can only imagine the emotions you must be feeling — guilt, fear, confusion and joy all mixed up together, as I entered this world and was whisked away just as fast. You probably have a million questions buzzing in your head. What? How? Why? But don’t let that get in the way of you seeing me as perfect, because I am, despite the body I was born with. My body is not me. My condition is not who I am, and even though in the coming weeks and months and years, you will be infused with a lot of terminology, medical diagnoses, care plans and surgical options, please don’t forget that inside my body, there’s a heart and a soul that needs to know you love me just the way I am.

To be healthy and strong, it will be in my best interest for you to try and fix my body. I know this and I am grateful for that gift. Some of my treatments may be painful and it will be difficult for you to stand by and watch me go through these experiences, but please try not to worry too much about that part because I’m resilient and I will make it through and come to understand why these treatments were necessary. But, along the way, please don’t allow the professionals involved in my care to reduce me to an object, a case study or a subject for a paper. Please don’t let me be treated as an anomaly, a statistic or a freak of nature because I’m not any of these things.

As an infant, I will not be able to tell you how I feel. I can only cry when I’m in pain and smile when I’m happy. I will learn a little more about the world each day and either grow to trust it or learn it’s a scary place. My needs may be overwhelming, but I will give back ten fold in ways that you may never know. I realize how tiring, how stressful, how agonizing it must all be for you, and I appreciate every sacrifice you’ve made and will have to make in the years ahead.

No doubt, you will be offered many opinions on what you may expect from me in the future — the things I may be able to do, but more likely, the things I may never be able to do. Take these opinions with a grain of salt. Just believe in me and I will surpass every limitation others have imposed upon me. Encourage me, but please don’t treat me differently because I’m not any different in the ways that really matter.

As I begin to grow older, the physical differences between me and others will become more clear, and it will be at that time that I will need you more than ever. I’ll need you to remind me of what I just said — that I’m the same as anyone else and should never feel any shame in my body.

At some point, I will have questions — some may make you uncomfortable or embarrassed, but please try your best to either answer them for me or find someone who can. It’s important for me to fully understand how my body works. I deserve to have everything everyone else does but may need more guidance in getting those things. Please be patient with me as I search and try to determine and understand what those wants and needs are. I may even be too shy or embarrassed to bring certain things up to you, and if this happens, I will need you to anticipate my questions and let me know you’re always there for me, no matter what.

I can’t promise it will all be easy and for this, I am sorry, but I just want the opportunity to grow into the person I was meant to be. With your love, support and protection, I know I will. I love you both.

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