‘It started very slowly. First, it was the shakiness of her hands. ‘GOD PLEASE, HELP!’ Next thing I knew, my precious 3-year-old was convulsing uncontrollably.’: Mom shares ‘unexpected blessing’ of daughter with Rett Syndrome

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“Her lips were blue. She was not breathing. 20 seconds. 40 seconds. It doesn’t seem like a long time. But when your precious 3-year-old is convulsing uncontrollably, it feels like a horrendous eternity. I wanted to pray. I knew I needed to pray. ‘She’s going to be fine,’ my positivity exclaimed. ‘But she looks so helpless!’ said my breaking mommy-heart. ‘GOD PLEASE, HELP!’

Like most expecting mamas, I had high hopes for my mothering experience. When we learned we were having a baby girl, I had the usual visions of ribbons, ruffles, and ridiculously cute outfits. I was looking forward to walking her into her first day of kindergarten one day. And even further future imaginations were towards her teen years, enjoying shopping trips and riding in the car singing harmony together. Those last two things were things I have fond memories of with my own mother. It wasn’t asking too much to experience those same things with my own daughter… right?

I was so amused by the preggers weight I’d gained. I’d never gained so many pounds in my life! 50 additional pounds everywhere. I swore five of them were in my face and five pounds apiece were in each breast alone! For the first few months, I mistook a ton of gassy moments as feeling her moving in my tummy. I remember trying to picture what she looked like in there. I was so excited to meet this little human composed of myself and her dad, whom I was sure was the best human in the world. Since we would eventually have three babies in 3 years, you’d think we were plenty fertile! But we’d tried and failed for 6 months for this first pregnancy, so we were beyond thrilled and grateful to be expecting the joys of anticipating our first child.

For the most part, my pregnancy was normal with very few abnormalities. Her name would be Kaiya, the name we picked one night while hanging out in our college campus student cafe 5 years earlier. It stuck. And we knew she was going to be a God-sized blessing to us. We just had no idea how.

When she made her big entrance into the world, I remember thinking if labor could be that simple every time, I’d have lots more kids! When I laid eyes on her, the best word I could use to describe her was ‘angelic.’ She was absolutely perfect. She was tiny! 5 pounds, 12 ounces, to be exact. But she was like a perfect little doll someone intricately designed before handing her to us. Here she was, FINALLY here… God’s gift to us. I remember thinking, ‘Praise God for this beautiful gift you’ve given us!’ I was overwhelmed by love and joy. She was here! She was ours to share with the world. I was grateful to God for the awesome privilege to get to be her mama and help lead and guide her to being the person she was put on this earth to be.

Courtesy of Rhianna Sanford

She smiled for the first time pretty early on at me and I was sure my heart was going to burst out of my chest. And the first time she giggled? Let’s just say that to this day, it’s my favorite sound, like ever. By the time she was 2 months old, she was no longer this tiny baby. She had plumped up nicely like a little butterball turkey! I also remember thinking about how strong she was! She was holding her head up on her own before the milestone expectation and bearing weight on her little pudgy legs at just 5 months old! Soon she’d be saying her first words. We expected to see her crawling and then, of course, walking very soon! But…I had no idea at just 9 months of age, we’d be experiencing the first of many regressions, of the very skills she’d already gained.

It started very slowly. First, it was the shakiness of her hands and clumsiness of attempting to grab hold of her sippy cups and toys we noticed. Then, we noticed she just wasn’t using her words as much anymore. I so wish I could remember the last time she said ‘mama.’ If I knew I may never hear it again, I would’ve recorded it to play whenever I wanted the reminder of her actually speaking intelligible words. But these signs of regression were only the beginning. We had no idea what was ahead. All we knew was we were still just as in love with this little girl as we were the day she came into the world, and we were holding to our faith we both so strongly held dear.

Courtesy of Rhianna Sanford

Over the next 2 and a half years, Kaiya would experience more developmental delays, not walking or talking and more regressions of gross and fine motor skills. We’d seen specialist after specialist and run test after test. It’s a good thing Kaiya never seemed to have any awareness of the scariness of needles because she had to endure being poked and prodded too many times to count and she never cried, even once. Thank God for that, because I think it would’ve been so much harder for my heart to take if she did cry every time a nurse came in with a needle! Up to this point, she’d been pretty healthy. Then, at the same time, we’d finally received a diagnosis of Rett Syndrome; the onset of seizures reared its ugly head at the age of 3 and a half years old. We were told seizures are very common in children with Rett Syndrome, but what was it?

Rett Syndrome is a neurological disorder caused by a mutation of the MECP2 gene seen almost exclusively in girls. Although babies born with RS have this mutation within their genetic code, there is usually not any sign of it until 8 to 18 months of age when the regression phase begins. So as parents of a baby born with RS, we were under the impression we’d had a totally normal developing child until the disappearance of her words and the dropsies showed up.

Courtesy of Rhianna Sanford

We were now truly living a life so unrecognizable than anything we’d ever imagined. In addition to the seizures, Kaiya would have trouble with weight gain that lead to a feeding tube, severe scoliosis, wretched digestive bouts leading, vomiting a dozen or so times per day, and a heart arrhythmia called Long QT Syndrome. All of these conditions led to Kaiya having to be on several medications, followed by several specialists and many ER visits.

Courtesy of Rhianna Sanford

We found ourselves clinging to our faith because we knew it was the only thing that would be powerful enough to carry us through this drastic bend in the road of our lives. We knew it was the only thing that could help us overcome the fear, doubt, disillusionment, and anger. We had some really hard days and scary moments. I cried and prayed during that first bout of seizures. We turned to God for help, and dared to believe He would be faithful to carry us. And He has. He’s been there through every health scare, and there were many. He’s been with us through every hospital admittance, and there were many of those too.

Courtesy of Rhianna Sanford

But today, at the age of 17, Kaiya is in the best health of her life. About 7 years ago, I knew I had not been treating my body well. And if I didn’t do something about it, I may go into the ground before Kaiya. That thought made my blood curdle. She was worth me taking better care of myself. And dang it, I was worth taking care of myself. My husband and I both agreed to begin putting into practice healthier lifestyle habits and some of the things we learned, we were able to apply to Kaiya in how we were feeding her. We’d learned valuable things about the importance of wholefood nutrition so once she got her feeding tube, we had complete control over what we put in it! It didn’t happen overnight, but before we knew it, we had one healthy girl on our hands. We have since avoided any sickness, seizures, or surgeries for the last 3 years! This freedom from meds, doctors, and hospital admittances have allowed our family to have much more freedom and hope for the future!

Courtesy of Rhianna Sanford

Today, we’ve just recently moved to Florida and are preparing to build our dream home just minutes away from the beach! When I began searching for a healthier lifestyle, I joined a healthy living community that led to starting a virtual franchise helping other families to take back their health. I had no idea the fulfillment I’d have helping other mamas get their families healthy too! I know had I been so disillusioned, gripped by fear, and worried about no longer living a ‘normal’ life, I never would have had the audacity to believe and have faith we could still indeed live a victorious life.

Courtesy of Rhianna Sanford

To this day, 17 years later after her birth, I am still overwhelmed by crazy love and joy at the thought of our daughter, Kaiya. It’s through her life we’ve learned the most important lessons. Believe in something greater than yourself. Life was never supposed to be easy. It’s full of twists and turns and many unexpected events. But have hope.

Kaiya is able to be in school every weekday and all day. She knows how to communicate nonverbally through a cool eye-gaze device and she is shocking all the new doctors she’s meeting down here in Florida as they learn her history. ‘How is this even the same girl?’ they ask! No, things aren’t perfect. But I ADORE my life. I wouldn’t trade any of it for the world. Because then that’d mean I wouldn’t have her. And she is just too much of an unexpected blessing to give up.”

Courtesy of Rhianna Sanford

This story was submitted to Love What Matters by Rhianna Sanford. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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