“How do I fix this?
My life has been quite the fairytale. I married my high school sweetheart, AKA knight and shining armor. He’s the prince charming every girl dreams about. I still wonder how I got so lucky, (why would he chose me). Right after graduating, we had a successful retail business and had our first child that was the light of our lives. Everything was so perfect that we decided to have another baby. It was such an exciting time in our lives and we talked about having children while we were young so we could retire and be done raising children before we turned 40.
We had our second baby girl (my husband always wanted girls) right after our first daughter turned 4. I was so excited about our second baby. I remember doing everything correctly and not even drinking caffeine. I never thought anything could be wrong with my child, because I had never been around anyone that had a special needs child or even had any at my school that I remember. When our second daughter was born, we had a few complications where she had some oxygen problems during birth. However, they did numerous tests and sent her home as a healthy baby.
I was overjoyed with this baby. She was so perfect! She was so easy, happy and I was able to take her to work with me, too. We were in absolute love. She quickly became everyone’s ‘favorite baby.’ People would ask to hold her because she would reach out for them. She was loving and so friendly to everyone. She didn’t walk until around the age of 2, but people told me some kids are ‘late bloomers.’ As her personality developed, she became a shining light to everyone she was around. I remember finding her after church one day at the playground telling a man how handsome he was. She was always complimenting people and hugging them. It brought some people to tears because she would be so encouraging and loving.
I became pregnant again with our third daughter when Sarai was only 10 months old. We were shocked! ‘I couldn’t be pregnant,’ I thought. ‘I just had a baby and this one wasn’t even walking yet!’
After the shock, we got ready for our third daughter. Sarai was so easy to deal with that I knew I could handle it. Our third daughter was born 18 months after Sarai and we were again feeling so blessed and thankful.
One day my life changed. I took the girls to a checkup at the doctor by myself because my husband had to manage the shop. (Sarai was 3 years old) The doctor was very serious, a very dour-faced man, except when he saw Sarai: he had a love for her. She had charmed him! She would hug him and tell him what a great doctor he was, and his sternness would melt away. As we were there, the doctor left the room for quite some time after seeing Sarai. I was getting irritated because I had two babies and he was having me sit in the room for so long. He came back in the room and his countenance seemed tragically sad. I thought he must have been helping another child with an emergency. He said he needed to tell me something and it was not good news. I was not used to bad news so I didn’t know to be scared. He looked at Sarai and teared up. (this is not the kind of doctor that would tear up).
‘Sarai has neurofibromatosis and she needs to go to a specialist right away,’ he said.
Neurofibromatotois is a disease that causes little tumors to form on nerve endings and can affect learning, balance, sight, hearing, and much more. He had noticed over the last few visits how she was walking and she had cafe au lait spots that were spreading and getting bigger. He just kept telling me how sorry he was. I have always been good at fixing things for my children so I asked him, ‘How do we fix it? Is there medicine? Is there some sort of surgery?’ He just shook his head and said to go to the specialist. They would let us know for sure with an MRI if she had it or not. He was hoping she didn’t. He said not to look at the internet when I got home. (Of course, that was the first thing I did.)
I remember taking my sweet little girl to the car that day and buckling her in the car seat and saying ‘There’s nothing wrong with you. You’re perfect!’ I went home and called my husband, relatives and few friends. They all said the same thing. ‘Don’t worry… there’s nothing wrong with that little girl!’ We were all in denial. We made an appointment with the specialist and they did an MRI that confirmed she had neurofibromatosis and it was throughout her brain stem. They said she would have a very difficult life and we would have a difficult time raising her, too. She would probably need care for the rest of her life. I was wondering, ‘What does that mean? Is my life over? How can we possibly manage our business, our children, our lives, and this disease that came out of nowhere?’ I was devastated.
‘I can’t do it!,’ I thought. I only felt that way for a few days and then I was sure the doctors were wrong and that it would be easy. I would teach her to do everything she needs to do. I’ll help her with homework. I’ll send her to a private school, etc. We did do all those things and more. I was in so much denial, but it was probably good that I didn’t know how hard it was going to be.
I again asked myself… ‘how do I fix this?’
I spent so much of my time fighting for people to understand her. Her disease had affected her ability to learn and mature. Numbers and words would jump around on her and her attention span was short and furtive. The schools just thought she was lazy. Nobody knew what neurofibromatosis was and would just dismiss me and ask if this is my only child, etc. The saddest part is my sweet Sarai’s personality started changing drastically. It was in the 90’s and schools were not equipped for special needs children as they are now. They would put her with the regular kids and she just could not keep up. Kids were mean, teachers were hard on her. She was suddenly scared of people and wouldn’t talk to anyone anymore.
We would try to help her with her homework and she could barely hold her pencil. She would cry every night and pull her hair out, literally. She just couldn’t get it. We had one instance where a teacher thought she was being lazy because she was not finishing her work in grade school, and she put Sarai outside and forgot about her. She was so scared by the time the teacher remembered she was outside that she was having a panic attack. When I found out and called the school, they miraculously moved her to another classroom.
School never got easier for Sarai or for us. Through high school I was still tying her shoes and getting her dressed. It was such a struggle and we had so many instances where people were so cruel to her. I was scared to have her out of my sight where I could not protect her. She started not wanting to go anywhere. She just wanted to stay home with her dogs. They were her best friends in the whole world. They did not judge her or be cruel to her.
A dream of Sarai’s was to one day ride a bicycle, like her sisters could do or the kids playing around the block. She had never ridden a bike before because of her balance issues, she would constantly fall over. One day, when Sarai was about 20, her grandpa got her a three wheeled bike. She was so excited! She could ride to the mini mart by herself. This was a big step for all of us. We got her a huge orange caution flag for the bike, a horn and a bright helmet. We thought that anyone could tell that she was special needs by seeing the three-wheel bike and the flag. She put her dogs on a leash and off she went to the mini mart. When she reached the corner of our street, a lady came out and started yelling at her that she had seen her dogs get out before and run through the neighborhood. Sarai had always tried to be careful, but they at times had slipped by her at the front door and would tour the area and then return home. The tragedy here was the lady just lost it on her, and said she would call the police and have them taken away. Sarai was so terrified that she could not speak, turned around and fled home. She was crying hysterically when we found her. From then on, she could not bring herself to ride her new bicycle around the neighborhood.
She became more fearful of going anywhere and the thought of going somewhere alone would terrify her. We did our best to take her places and encourage her there was nothing to be afraid of, and that most people were kind and thoughtful. She began collecting Barbies and creating characters and stories about them. One of her favorite things to do would be to go to a toy store and pick out new clothes and items for them. We eventually bought her a cell phone so she could go into the toy isle in the store while we shopped for groceries and she could always reach us. After a great deal of time working with her, she began to feel comfortable having a respite caretaker that could take her out a few days a week for us to public places. This was a giant step since she has a hard time trusting people. She would bring the cell phone with her, taking pride that she could do it on her own.
After going out one day, she called me from a store parking lot crying so frantically that I was sure something terrible had happened. She had gone to the toy aisle and picked out a Barbie she adored and was excited to bring it home to her collection. Feeling courageous because she had actually gone to the store without her parents or siblings, she decided to go to the self-checkout. She paid and checked out and headed for the door with her care provider, and as she walked through, the scanner beeper went off. She was scared and didn’t know what to do as a security person came up to her abruptly and demanded a receipt. Her mind went blank, she couldn’t remember taking the receipt. It was one of her worst fears after seeing a video online about a special needs girl getting handcuffed at Walmart. She started to panic as she looked for her receipt in her pockets and couldn’t remember where she put it. As she was frantically looking, she couldn’t talk, couldn’t think, and another security person came up and demanded it. More security surrounded her. Her fear turned to terror. She thought they were going to take her to jail and she would never see her family again. Finally, they realized it was her phone reacting with the scanner and let her go. She was able to walk out, then broke down into tears and called me. It was horrible, it was traumatic, and it seemed so unnecessary.
This is when I realized, when I couldn’t be beside her to tell people she was special needs, that somehow, I needed to be able to show people. She is unable to articulate it herself, but If she had something she could show them, I believe they would have been more compassionate and patient. I did end up contacting the company’s corporate office and they said they would talk to their employees and go over the video tape. They asked for me to bring Sarai in so they could talk to her but she was way simply too terrified to go back. I’m sharing the story just to remind people to always be kind and to have some caring and patience for people. This story is just one of the many our family has of situations with her in public. nd yes, she has gone back again after some persuading.
Having a 25-year-old daughter that has special needs, we have struggled throughout the years with how to make it clear that in many situations she needs a little more time, requires a little more patience, needs a little more assistance and compassion than is commonly given. I again wondered –‘How do I fix this?’ We remembered that on a trip to Disneyland, the kids with birthdays were given a button that said ‘today is my birthday!’ All of the Disney cast members would look for those with buttons and be sure to greet them with a ‘Happy Birthday!’ whenever they were seen. The buttons were large, fun, and caught your eye when you walked by. Soon, we found ourselves wishing those kids a happy birthday as well! With that in mind, I made some buttons and a lanyard that said things like, ‘Be Patient, I have Special Needs’ and ‘Please be Kind, I have Special Needs.’ At first Sarai had no intention of wearing one, and it took some persuasion to finally pin one to her jacket when we went to the store. What happened then was just short of amazing to us. She had gone up the aisle to get jalapenos to make a snack that she loves to make (jalapeno poppers – I know, right?) She came running back with a big smile on her face. A kind lady had seen her button and had taken the time to come up to her and sweetly ask what she was going to make. After so many years of getting dirty looks from people for accidentally bumping into them or not realizing she was in their way, it was the first time we can remember that someone spoke to her in a store. I think we all cried.
Sarai wears the buttons and lanyards everywhere now and has been constantly engaged at restaurants, parks, stores, movie theaters, and just about everywhere she goes. It seems that everyone has a loved one, a friend, or knows someone with special needs it touches a heart string when someone like Sarai is no longer trying to hide it. We started a foundation called KindHearted for Special Needs where we have tshirts, buttons, lanyards, bracelets that people with Special Needs or family members or loved ones can wear to bring awareness. We have found they give people a moment to pause and take a moment to give patience, kindness, thoughtfulness, assistance or whatever the situation may require, for people with disabilities. We have realized that most want to be good people, and this gives them an opportunity.
With Sarai’s disability she has and will likely maintain the maturity level of about fifth grade. As I have already mentioned and you can also imagine, the struggle throughout middle and high school was devastating to her and, really, all of us. When she did finish, we thought, ‘what do we do now?’ We tried placing her with some helpful agencies to see if she could work a regular job or some workplace assistance but were told she could never compete in a workplace. Again, we were sadly frustrated. A friend asked if she would mind coming by and helping at a daycare. As it turned out, the kids adored her and she found that she could identify with and engage them better than many adults that just did not have the patience. Helping with the kids has brought meaning and purpose to her which we were so afraid she may never have. She comes home with stories about her little friends almost every day and even invites them to her birthday parties.
Sarai’s love of Barbies and her newfound confidence has brought her much success with an Instagram she has created called Shrunken Adventures. She has given her dolls their own character names and background stories, taking them all over world and documenting with pictures and titles for her thousands of Shrunken Adventures followers.
I would say that my life story has not gone the way I would have written it myself had I been the author, but I love every minute of it. I have three wonderful daughters, a husband which we are celebrating our 30th anniversary, and even an adorable grandson. We are not unique in that we all have struggles, heartaches, tragedies and victories, but I have learned to have a little more patience, a little more kindness, a little more compassion, and to be a little more kind hearted. My fairy tale continues.”
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This story was submitted to Love What Matters by Linde Thomas of Kennnewick, Washington. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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