When I was younger, the thought of pregnancy made me both curious and a little scared. The idea of a tiny life moving around inside me felt so strange. As time went on though, the dream of having my own family grew stronger, and those fears slowly faded. I pictured pregnancy as something glowing and beautiful, some tiredness, some weight gain, but mostly joy. What I didn’t expect was sickness, weakness, and endless worry.
I was blessed with two healthy boys, but getting through my pregnancies was far from easy. With both, I suffered from hyperemesis gravidarum, a severe type of morning sickness. I threw up constantly, sometimes 20 to 30 times a day. I grew weaker and thinner when I thought I would be gaining that classic “baby bump glow.” Still, none of it mattered to me. My only prayer was to carry my babies safely. After long, difficult months, I finally welcomed my sons, Austin and Andrew, into the world. I thought the hardest part was behind me. I soon learned the real challenges were only beginning.
When Austin was born, I fell in love the moment I saw him. He had dark hair and a sweet personality, and I couldn’t wait to watch him grow. But as he reached his first birthday, I noticed something wasn’t quite right. He wasn’t talking like I thought he would. When I asked his doctor, I was told not to worry, that he was just a late talker. By 18 months, I knew something more was going on. We began early intervention, and autism was mentioned. I didn’t want to believe it. I thought autism meant being withdrawn or distant, but Austin was loving, playful, and always smiling. I didn’t understand then how broad the spectrum really was. Still, I followed my instincts and enrolled him in special education pre-K, hoping he would get the help he needed. Not long after, I found out I was pregnant again.
Andrew was born in 2019, four years after his brother. My pregnancy was just as hard as the first, but now I also had a busy toddler to care for. At birth, Andrew seemed fine, aside from a brief concern with low blood sugar. But within months, I started noticing delays. He couldn’t hold up his head, struggled to move his arms and legs, and had trouble feeding. The doctor reassured me it was just a delay, but by four months, his development was far behind. He developed noisy breathing and was diagnosed with tracheomalacia. I was told he would outgrow it, but my mother’s heart told me otherwise.
Therapists and specialists soon became part of our lives. Andrew wore a helmet for his head shape, needed therapy, and was scheduled for multiple tests. In early 2020, both he and Austin underwent surgery on the same day. I felt like we were finally moving forward, but then COVID hit. Appointments were canceled or delayed, and we had to wait months for answers.
Eventually, we learned Andrew was silently aspirating food and liquids. He needed a feeding tube, and later surgery for his airway. Even after that, he continued to battle chronic respiratory problems. A simple cold could keep him sick for weeks. While the world was just learning about social distancing, it had already been our way of life for survival.
During all this, Austin was officially diagnosed with autism and ADHD. We also discovered that his hearing had been blocked by years of severe ear infections. After surgery, he began to speak, and hearing his voice for the first time filled me with indescribable joy.
In 2021, Andrew’s neurologist suggested genetic testing. Months later, I got the call that changed everything. The test showed he had a rare condition called H-ABC, caused by a gene mutation. At first, I felt relieved to have an answer, but as I researched, I realized how serious it was. H-ABC is progressive, incurable, and life-limiting. My heart broke all over again.
For a while, I was buried in grief and guilt. I wondered if I had failed my children. But then I made a choice: I would not let despair win. If my boys had to fight battles, then I would fight beside them. I became their advocate. Austin began ABA therapy and special education, while Andrew received nursing care and support from a team of specialists.
Today, both my sons are surrounded by love. Austin is thriving and learning more each day. Andrew continues to face challenges, but he is cared for by a wonderful nurse and a community that loves him. He is one of only a handful of children worldwide with his exact genetic variant, but he is never alone.
Life as a mother of two special needs children is not what I once pictured, but it is a life full of love and purpose. Every day, I am grateful for them. They have taught me strength, patience, and resilience. No matter what lies ahead, I know we will face it together, with love, determination, and hope.
