My name is Jade, and I am the proud mother of two beautiful girls. Kiara is seven, full of energy and light, and Miliah is four, my little warrior. I grew up in a loving home with my mom, younger sister, gran, and my grandpa, who was truly my best friend.
I found out I was pregnant with Miliah in December of 2017 after a blood test. I was overjoyed at the thought of another little one joining our family. But almost from the beginning, the pregnancy was far from easy. During the first trimester, I began to bleed and had to rush to the hospital. It turned out my cervix was too thin, and I was given medication to help. Not long after, I ended up back in the hospital during a dangerous listeriosis outbreak.
I spent two weeks there on medications and injections, worried every single day that I might lose my baby. My gynecologist was not very reassuring either, constantly telling me I was not as far along as I thought.
At 30 weeks, I decided to see a different doctor. Right away he noticed something serious: I had almost no amniotic fluid, which meant Miliah barely had space to move inside me. I was placed on strict bed rest, went for checkups every two weeks, and was given fluids to help. Finally, at 39 weeks, I was scheduled for a c-section.
When Miliah was born, she did not cry. The doctors quickly took her away to get her the oxygen she required. I only got to see her hours later, but the time I held her, my heart was completely hers. That direct I understood how valued she was, and how deep my love for her ran.
Just three weeks later, everything changed again. Miliah began vomiting constantly and could not keep her milk down. She was weak, soft, and awfully quiet. We hurried her to the pediatrician, who admitted her right away. Pipes were placed in her nose, and tests results show that she had laryngomalacia. She was transferred to another hospital for further care, where she remained on thick feeds for a month before we were able to take her home.
But her fight did not stop there. Over the first three years of her life, she went through uncountable tests, CT scans, MRIs, biopsies, and blood work. Yet no one could explain why she was so sick. We went from specialist to specialist, badly searching for reasons. Finally, in September of 2021, the inborn results came back. Miliah was diagnosed with a rare condition called 16q11.2q21 Duplication.
Fewer than ten people in the world have been known with it. The psychotherapist told me there was little they could do because of how rare it is. Hearing those words was the hardest moment of my life.
Her diagnosis showed why she faced so many medical dares. To this day, Miliah has been diagnosed with Global Developmental Delay, inattentive attacks, speech impairment, reflux, obesity, intellectual delay, heart complications, sinus issues, neurological conditions, and problems with her muscles and bones. She has had multiple surgeries and has suffered more in her four short years than most people face in their life time. Watching her go through all of this breaks my heart, but her bravery shocks me.
She started therapy at nine months old because her muscles were too weak. Week after week, she cried, but she kept going. In 2022, she had major surgery on her feet, where doctors cut and repositioned ten bones. She left the hospital in a wheelchair but was strong minded to walk. By the third week, she was trying to stand without it, falling and getting up over and over again until she achieved. Her soul is unwavering.
For me, the hardest part is watching from the pastimes, feeling helpless as she suffers through hospital stays, pain, and recovery. There are days I break down in the bath, overcome by fear and sadness. But then she smiles, and suddenly everything feels worth it again. Her laughter is the greatest medicine.
Miliah may be nonverbal, but she communicates joy with her presence. She loves the outdoors, wetting in water, being around cows and cats, and simply living life with willpower. She doesn’t let her challenges define her. She motivates me every single day.
Since losing my job during COVID, I care for her around the clock. It is killling, and financially we rely on fundraising for many of her needs. Asking for help is hard, it makes me feel like I’m failing her. As a mother, you want to give your child everything without having to depend on others. But I’ve learned that it’s okay to reach out.
My advice to other parents walking a similar road is to never compare your child to anyone else. Your child is unique, and they are exactly where they are meant to be. Take care of yourself, too, because your mental and physical health matters. It is okay to have bad days. It is okay to ask for help. And most importantly, you are not alone.
Through it all, Miliah has shown me the meaning of strength. She has taught me to keep going no matter how heavy life feels. She is my little fighter, and my love for her is endless.
