To the Mom Who Found Herself Asking, ‘Why My Baby?’

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unnamed (86) When my son was born 23 and a half years ago, I thought — no, I knew — that the sun, moon and stars all rose and set because of him. My world was complete; it was perfect. When he was 18 months old, my world changed… his world changed.

It all changed with one seizure, followed by hundreds of seizures. Many, many hospital stays and tests later, there were still no answers as to why. I just wanted to know, Why my baby? 

I didn’t know that the seizures were not the only “why” I’d be asking later on. At age 3 came the autism diagnosis. Doctors were telling me all of the things my son would never do. I was heartbroken, not for myself — well, maybe a little — but mostly for him. I decided to research and research and research until I found that one doctor who believed in my son. He made all the difference. Instead of telling me the things my son would never accomplish, he gave me the hope and the passion to see the things my son would — and has –accomplished.

Screen Shot 2015-01-19 at 4.26.21 PM There have been other obstacles thrown in along our journey — Type 1 Diabetes at age 12, being one of them. But like the trooper that he is, he faces it head on. If I could go back twenty years and give myself advice it would be this:

 Do not let negativity trump positivity!

If there is a will, there is a way. And don’t try to be Superwoman. Ask for help. Involve others in our journey. Don’t think that just because they don’t walk in my shoes they won’t understand. Spread awareness. Do not ever feel sorry for yourself or your child. 

My son is now 23. He’s accomplished a lot, and, he still has way more to accomplish in his life. And I will be right there beside of him every single step of the way. My son is still just as perfect to me as he was the day he was born! I was right. I know the sun, moon and stars all rise and set because of him.

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The Day I Stopped Chasing After a Diagnosis

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We spent more than two years chasing a diagnosis. A diagnosis would tell my why my baby girl couldn’t do things. A diagnosis would tell me when she would catch up. A diagnosis would give me a roadmap to this life. So I thought. I was determined. Turns out, I was wrong.

When my daughter was a year old, we got a new pediatrician who actually listened to my concerns. Our baby could only sit for one to two minutes and would rarely would put her hand down to prevent falling over. She couldn’t roll over, pull up or weight bear for more than few seconds. She tended to slouch to the right, her eyes rolled in/crossed and she kept her hands closed in a fist most of the time. On the first visit, the doctor sent us to a neurologist. The neurologist ordered a CT, then an MRI. He was concerned her fissures were closed so he ran more tests, but nope, they were normal. He sent us to a geneticist. She was sure it was Prader-Willi syndrome. I read, I cried, I accepted it. Nope, test was negative. I cried. More tests, more reading, more “this could explain it!” Nope, tests came back normal. I cried. The ophthalmologist said visual attention delay and pseudo-strabismus. More descriptions of symptoms but no answers. No roadmap. With each diagnosis marked off the list, I was relieved and heartbroken at the same time. She continued in physical and occupational therapy and made slow-as-molasses gains. She could use a honey bear cup, self-feed finger food, sit for a while, and babble. At 22 months she had an EMG. Normal. Except now we could add high pain tolerance to the list of symptoms. More searching. More tests. More waiting. More “This is it! Oh wait, test was negative.” More crying.

She got a rear position gate trainer at 23 months. She got around with help and Wheels and loved it. At 25 months, she rolled from her tummy to sit, she waved “bye-bye” and sat up for the first time in her bed. At 26 months she started scooting on her rear to get places and she took four steps using Wheels without assistance. At about 27 months she had a muscle biopsy and we waited forever for results. “Looks mitochondrial.” I read, I cried, I read, I cried, I accepted it. The specialist was out for several months on leave. I joined support groups as a silent observer. The day finally arrived to get the diagnosis. Mitochondrial will be hard, but it will bring with it a map. I was prepared. I had a plan. We would start supplements that can help. The specialist would officially hand me the diagnosis that goes with this map, but instead she said “I really don’t think it’s mitochondrial. The findings in her muscle biopsy are probably due to something else. I’ve talked with the geneticists. The next step is a whole exome sequencing. It’s the only test left.”

I didn’t cry the day we didn’t get the diagnosis.

Screen Shot 2015-01-19 at 4.17.10 PM I chose to step off the diagnosis-chasing roller coaster. And I could finally breath. I could finally see that my baby girl is actually 3 years old and could do so many things. Why can’t she do things? I am not sure. But she can do things because she works her cute little butt off, and we practice and try and are patient. When will she do things? On her own time. Now she is almost 5 and can do so many more things. She can drink from an open cup, say about 30 words, smile, dance, walk up stairs, go to “big school” (special ed pre-k) and so much more.

We still see the geneticist once a year. I like her and her nurse. One day we’ll do the test. But for now I’m busy planning an Elsa party at Chuck E. Cheese. Turns out I don’t need a roadmap to raise this adorable little girl. She can get where she’s going without it. Someone much larger than me has a plan. And I actually get lost even with a GPS, so it probably wouldn’t have helped me anyway.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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Incredible New Invention Is Teaching the Tongue to ‘Hear’ Sounds

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A research team at Colorado State University has come up with a unique alternative to hearing loss. They’ve turned to a different part of the body — the tongue.

Their developing device uses the tongue’s nerves to interpret electrical signals, according to Popular Science. Audio, such as a particular word, is taken from an earpiece microphone and turned into electrical signals that are sent to a mouthpiece using Bluetooth technology. The mouthpiece then creates a signal or pattern on the tongue that represents the spoken word. Eventually, the brain will subconsciously identify a pattern as signifying a specific word.

Dr. John Williams, associate professor in the Department of Mechanical Engineering and JJ Moritz, a graduate student, have spent a year testing prototypes, according to The Telegraph. They’re in the process of filing a provisional patent and launching a company to sell the device.

I’d like to make a good impact on the world and maybe change some people’s lives,” Moritz says in the video below.

Check out this revolutionary device in the video below:

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Thousands of Soccer Fans Went Crazy When This Boy With Down Syndrome Took the Field

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Jay Beatty, 10, from Armagh, Scotland, is a huge fan of Scottish soccer team, Celtic.

At a recent away game, Jay, who has Down syndrome, got to speak to the team before they took the field. Then he was given the opportunity to score a goal during half-time, Independent reported. In a heartwarming show of sportsmanship, all 6,007 fans present let out raucous applause for the delighted soccer fan.

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via Twitter

When Jay was born, we hoped and prayed that people would treat him with respect,” Martin Beatty, Jay’s father, posted on Facebook. “Because of his love of the greatest club in the world, his life has become a dream come true. We thought 2014 was just amazing but today was something else.”

Watch the crowd go wild in the video below: 

h/t Bleacher Report

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This 4-Year-Old Cancer-Fighter Has an Adorable Announcement for Her Best Friend

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Violet, 4, and Juniper, 3, became best friends while undergoing treatment for retinoblastoma at Seattle Children’s Hospital, CNN reported. Retinoblastoma is a rare cancer of the retina, according to St. Jude Children’s Research Hospital.

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When approached by The Make-A-Wish Foundation, both girls chose to visit Disneyland. Violet’s trip was in December 2013. When Juniper got her wish the following October, the organization offered Violet the chance to share the good news with her friend.

In the video below, Violet, dressed as a princess, excitedly breaks the news to Juniper.

Juni, you’re going to Disneyland,” she exclaims. “That’s the best place on Earth, Juni!”

In just a week, the sweet video has received nearly 300,000 views.

“[Juniper] was super excited to see Violet and she knows what Disneyland is, so she got really excited,” Danielle Ouellette, Juniper’s mother, told CNN.

Both girls loved their time at Disneyland and are currently in remission.

h/t Reddit Uplifting News

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A Few Things I’d Have Told Myself Before Our Autism Diagnosis

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Here are a few things I would have liked to tell my then self, my pre-autism self:

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My daughter, Shea

1. It’s not the end of the world. It can be crazy hard at times but it will enrich your life in ways you never imagined. Our daughter was diagnosed at Children’s Hospital on Halloween at 18 months. The halls were filled with little kids trick-or-treating in their costumes. Distraught and devastated, I looked at my husband and said, “What are we going to do?” and he said, “We’re going to love her with all of our heart,” and we have from day one. Little did I know then, one of the happiest days was going to be trick-or-treating with my 16-year-old daughter (in her prison costume) seeing genuine, unbridled love and happiness in her eyes.

2. People can be mean and some will never understand. Forget it. Stick with the people who support you and love your child no matter how nuts it is at times.

3. Reach out. There’s an incredible community, and we all need each other. Take help from those who are farther along in their journey, and help those who are beginning theirs. We’re all in this together.

4. It’s OK to take a break. You will need it, and it will make you a better parent and a happier person.

5. Stick together as a family and don’t leave your typical kids behind. They need your love and support too. Be a family with equal and mutual support.

6. Be grateful — no matter how long some days are and how tired you sometimes get. This special, crazy, incredible child will make you a better person. The best version of yourself.

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Me and Shea on Halloween

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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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