The Author with Her Family
Parenting a child with Down syndrome is a journey best traveled in faith. My own journey is captured by these lyrics from the modern-day hymn, “God Will Make a Way” by Don Moen.
“God will make a way when there seems to be no way”
When I got married 12 years ago, I was diagnosed to have PCOS (polycystic ovary syndrome), a common cause of infertility. I was 39 years old then, making it even more difficult for me to conceive because of my age. But God did find a way: After six months of work-up and treatment, I became pregnant with my first child and it was uneventful. I delivered a healthy baby boy by Caesarean section. My husband and I then prayed for a baby girl to complete our family. God answered our prayer! I became pregnant again with our second child.
“He works in ways we cannot see”
This time, it was a difficult pregnancy. I felt tired most of the time and had spotting in the first trimester. Towards the end of my second trimester, I felt a shooting pain in the groin area followed by spotting of fresh blood. I also had early contractions which later progressed in frequency and severity.
On the 29th week of my pregnancy, I delivered a preterm baby girl who only weighed 1.2 kilograms. We named her Anaiah, which in Hebrew means “God answers.” Indeed, she was God’s answer to our prayers!
God would later reveal to us that prematurity was not the only problem of Anaiah. During her first week in the Neonatal ICU, her pediatrician noticed some features of Down syndrome: upslanted eyes, simian crease on one palm, and slightly protruding tongue. Karyotyping confirmed our worst fear: Anaiah has trisomy 21. Our precious little girl was born with Down syndrome.
“He will make a way for me”
Even the probability of Anaiah having Down syndrome based on her features was enough to devastate us initially. I went through the stages of denial and depression, then bargaining with God, then acceptance. So even before the karyotyping results were released, I had fully accepted God’s will by faith.
When the results showed that 80% of her blood sample had trisomy 21, I rejoiced over God’s goodness that Anaiah did not have complete trisomy 21. This meant that Anaiah may or may not develop the typical disabilities that children with Down syndrome usually have. It also meant that we had to trust God every step of the way as He shows us His will and purpose for Anaiah.
“He will be my guide, hold me closely to His side”
Little by little, God revealed to us Anaiah’s disabilities and abilities. We found out that she had a congenital heart disease (atrial septal defect) which did not require heart surgery yet. During her first three years of life, she would be hospitalized once a year for infections. She would always have colds for most of the year. Despite this, she remained active, cheerful, and resilient all the time. She started her speech and occupational therapies early and was able to walk independently at age two.
She could do almost all her developmental milestones except for one: We noticed that even at three, she did not babble or follow sounds. Hearing tests confirmed that Anaiah had profound sensorineural hearing loss of both ears. No wonder she would not wake up to the sound of fireworks during New Year. She could not utter simple words like Mama and Papa. But she loved to dance and strangely, could dance to a tune. She would not turn to the sound of her name when called, but she could follow instructions.
Knowing about Anaiah’s impaired hearing once again dampened my spirit, but later, my husband and I learned to accept it by faith and walk with God more closely.
“With love and strength for each new day, He will make a way”
Today, Anaiah is God’s work in progress, just like all of us. God continues to work little miracles in her life. She started wearing her hearing aids and continued her therapy sessions. She attends a SPED-inclusive general education school. Last year, her hearing tests showed remarkable improvement from initial profound hearing loss to moderately severe hearing loss without any surgical or medical intervention. This year, she was promoted to first grade after three years in kinder and nursery. She can already write her own name and pass written tests on her own. While still not yet able to talk coherently, she is more communicative and tries to learn more words. Every little achievement she has is always a reason to thank and praise God for. Truly, with God, nothing is impossible!
Indeed, parenting a child with Down syndrome is a difficult journey, but it is not a hopeless one. It is not just a walk, but a leap of faith. Faith is not seeing to believe; it is believing first to see that it can be done. And it all starts with fully accepting and embracing God’s purpose for your child with Down syndrome.
When I learned that Anaiah had Down syndrome, I once asked the Lord why. He answered me with this Bible passage in John 9:2-3:
His disciples asked Him, “Rabbi , who sinned, this man or his parents, that he was born blind?”
“Neither this man or his parents sinned”, said Jesus. “But this happened so that the works of God might be displayed in him.”
Your child with Down syndrome is neither an accident nor a punishment nor a burden. He or she is fearfully and wonderfully made by God – a masterpiece to showcase His glory. Accept and embrace God’s purpose for your child’s life. Develop a heart to follow God, the faith to believe that He is able, and the courage to take that step of faith.
“He will make a way.”
Goldie Majarucon-Ferrolino is a medical doctor and an associate professor at a medical school. She and her husband Art have been married for 12 years and are blessed with two beautiful kids, Tristan and Anaiah. She hopes to find time to express and develop her creative side through writing and painting.
