The minute a woman gets pregnant, the desire to have a strong and healthy baby develop in her womb becomes her greatest wish; she prays hard each night for everything to be normal and to have a smooth and safe pregnancy and birthing journey.
With these desires come the responsible choices like avoiding stress, eating healthy food and keeping a balanced diet, religiously taking prenatal vitamins, and just trying to remain as strong and happy as can be. Sometimes though, despite taking the necessary precautions and being as disciplined as one can when pregnant, nature takes a different course and drastically changes the lives of the parents and the child.
Linde Thomas shares a beautiful story of her journey in raising a special needs child. She starts off by describing her life as a sort of fairytale: getting married to her high school sweetheart, putting up a successful business, and having a child. Things went so well for the couple that they decided to have another baby.
The experience Linde and her husband gained from their first child made them more excited for baby number two.
“I was so excited about our second baby. I remember doing everything correctly and not even drinking caffeine. 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.”
Sarai, their second daughter, was pure sunshine. Linde shares how Sarai would bring a smile to people’s faces because of her charm – she would give hugs and compliments to people and disarm even the sternest ones with her personality. She was such an endearing child that Linde says she instantly became ‘everyone’s favorite baby’.
Much to the couple’s surprise, they discovered Linde was pregnant again right around Sarai’s tenth month. Despite the shock, they were still overjoyed and prepared the best way they could. But it was during one fateful afternoon that news about Sarai’s health jolted them.
“I took the girls to a checkup at the doctor by myself because my husband had to manage the shop. 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.”
Before delivering the news, the doctor looked at Sarai and teared up. He then proceeded to tell Linde that Sarai had neurofibromatosis and it was important for them to see a specialist right away.
Linde, along with friends and family who heard about the diagnosis, were in denial and kept insisting Sarai was just fine. The MRI results proved otherwise. Sarai indeed had neurofibromatosis throughout her brain stem. From that day on, things changed forever.
Having been told that Sarai would need to be cared for for the rest of her life, Linde still couldn’t process it all.
“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.”
Despite the rollercoaster of emotions, Linde and her husband fought hard for Sarai. They knew not everyone would be kind and patient enough to learn more about Sarai’s condition, that the world wouldn’t be gentle on her and that she would inevitably struggle. True enough, Sarai faced a lot of hurdles along the way.
“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.”
Linde recalls how things didn’t get any easier after that. It reached a point where Sarai just didn’t want to go anywhere anymore. Home was her only safe place, with parents who took good care of her and dogs who kept her company and compensated greatly for the cruelty of everybody else she encountered in school.
After numerous instances of Sarai being greatly overwhelmed by not-so-smooth interactions with neighbors and strangers, Linde still refused to give up.
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?’
After contemplating for quite some time, the idea finally hit Linde.
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.’
It took awhile for Sarai to agree to wearing a button but when she conceded, things suddenly started looking up and life for Sarai started becoming happier.
“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.”
The buttons and lanyards helped more than Linde and Sarai. It prompted so much warmth and kindness from almost everyone they encountered: at restaurants, stores, movie theaters, everywhere. Despite the positive effect of sporting a button, there was still the question of whether Sarai was going to be able to join the workforce or not. Fortunately, a friend of Linde’s had a proposition that quickly countered the family’s frustration.
“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.”
Everything worked out so well that it inspired Linde and the family to start KindHearted for Special Needs, a foundation aimed at raising awareness and giving people with special needs a fair chance at living like everyone else and being treated with patience, compassion, and most of all, respect.
Sarai’s journey is far from easy and seemingly has more downs than ups but she and her mother have definitely inspired countless others to carry on with joy and to always extend kindness and understanding, no matter the circumstance.
(Take a glimpse of how creatively Sarai combined her love for Barbies and storytelling by following Shrunken Adventures on Instagram! You’ll love it.)
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