My brother, our special gift
Jeremiah Chan // September 4, 2018, 1:28 pm
For 25 years, Jeremiah had a younger brother, Ezekiel, who suffered from cerebral palsy and epilepsy. Through his story, Jeremiah hopes to encourage families of children with disabilities.
When my father had just become a Christian, he had a vision from God about his past and his future.
In that vision, one part concerned how many children he would have. God told him: “Your firstborn will be called Jeremiah, and one and a half years later you will have another son. Jeremiah will be mischievous, and Ezekiel will be quiet.”
My father did not even know how to spell “Ezekiel”. Having just become a Christian, he kept spelling it wrongly during the vision.
He asked God how to spell it and God replied that it’s in the Bible! Thereafter he kept asking God what He meant by Ezekiel being “quiet”, but God did not answer.
Regardless, my parents knew from the very beginning that both their sons were gifts from God and that, ultimately, both of us belonged to Him.
Jeremiah will be mischievous, and Ezekiel will be quiet.
My younger brother, Ezekiel, was born normal and through a natural delivery. However, when he was just two weeks old, he developed epilepsy. The doctors did all the tests they could, all the different brain scans, but they could not find a cause. It happened out of the blue.
Since I was young at the time, the details are fuzzy to me, but my mother said that, one day, Ezekiel’s limbs just contracted and he started to shiver. It was from that point on that the family knew that Ezekiel would be different.
I was too young to recall the many times he was in and out of hospital. I only know he had to take a lot of steroids and other medications to control his seizures.
What I do remember was how he would cry every night before sleeping. For more than a decade, he would cry every single night before going to bed. It was just that particular time between 9 to 10 pm when he would get upset. I do not think he was in pain or hungry, and to this day we still do not understand. He would cry for a long time, and we would always play the same Kenny G saxophone music which helped calmed him down.
Seeing someone you love struggle to do basics things we take for granted was disheartening.
As I got older, I started to help out with caring for Ezekiel more. So, for example, during the weekends when our helper had her day off, I helped to bathe and feed him. Feeding him was especially frustrating at times. He got very excited at meal times and often moved about during the first few spoonfuls. We also could not put too much food on the spoon because he choked easily.
It got physically challenging as he grew older as his lack of mobility caused his faeces to harden, so he often had difficulty clearing his bowels. Seeing someone you love struggle to do basics things we take for granted was disheartening.
But I always had a strong bond with Ezekiel. Maybe this closeness was because we had a very small age gap between us. Whatever the reason was, I always doted on him, even as a young boy.
I cannot recall any instance where I was jealous or angry at my parents for giving him more attention. I remember that when I was around six years old, I was watching cartoons on television, and he was lying behind me. He got excited by the television sounds and kicked me really hard in the side of my stomach. It hurt badly but I did not react in anger. I just asked him lovingly why he did that.
I knew from a young age that he would not be able to do many things on his own, so I would have to look out for him.
We had a pet name for him – “Chaba”. It started when our first domestic helper called him “Tabachoy”, which means “chubby boy” in Tagalog. Due to the drugs he had to take since he was a baby, his cheeks were always puffed up. His body did not develop normally resulting in small limbs but his face remained chubby.
We ended up adapting “Tabachoy” to “Chaba”. I would always speak to him, tell him that I loved him, and update him on what happened during my day. Although he always stared at the ceiling, I could tell that he was listening. Sometimes he smiled, and I hugged and kissed him on his cheeks a lot.
So even if I could change my family’s past, I would not change a thing.
We always saw Ezekiel as a blessing, not as a burden. This is because we knew he was a gift from God. He brought my family together, as we united to meet our unique set of challenges. I believe caring for my brother, who was not able to take care of himself, helped me grow to become a more compassionate person, not just for people with special needs, but more compassionate in general.
If I had a brother who was physically-abled, I would probably grow up doing what every pair of siblings would – fighting over toys and the television! So I am very thankful and grateful for the experience of taking care of and living with someone with special needs.
Ezekiel passed away from pneumonia on 14 May 2015. It was then that I really had a fuller understanding of how God sees His children.
During Ezekiel’s wake, my father was praying and seeking God for comfort in his time of grief. And God spoke to my father: “Since Ezekiel has come to Heaven, he has not stopped running. Ezekiel is very happy here. He is beginning to learn how to re-live his life since birth – everything that he could not do on his own on Earth.”
It was reassurance that Ezekiel was now in a safe place, without any pain.
My father also shared with the rest of the family two other revelations from God that he received when Ezekiel was very young.
God said, “As a parent, I know you want your children to grow up perfectly healthy. With your human eyes, you may not see children with special needs as perfect, but in my eyes, they are perfect.”
The other revelation was that God had told him that he had been given Ezekiel because God knew he could manage it. That struck me: God did not give Ezekiel to any family. Instead, He had picked and chosen our family, one He knew could rise to the occasion.
And this was not for our own glory or for us to boast in our own strength, but for the privilege to give God the glory and to boast in His name! To boast in His faithfulness and His provision by going through life totally dependent on Him for everything.
These revelations summarised what all of us had learned in the 25 years spent taking care of Ezekiel: we were really just guardians of this child – he had belonged to God all this while.
God has placed them in our lives – whether as family members or just someone you know – to help us relate to one another better and have more compassion for our fellow men. Even though they might not be able to help themselves, they have a tangible impact on their families and on everyone around them. They shape the environment they are in positively. They push us from self-centredness to considering the needs of others first.
If we see what God is doing through them, we will gain a better understanding of who God wants us to be and how He sees us – people made in His image!
God has many names, but in my family, He has always been Provider. We are not well-off, but we have never lacked anything we needed. God has always been faithful! He is Lord over our family and every situation. We would never have been able to come through or face life daily if we did not rely on Him completely.
He is also Friend because there have been many times when we struggled and felt no one understood – but He did! We knew we could always go back to Him and back to His promise that Ezekiel was a gift to our family. We could always go back to the sure hope that He would provide for us and always be with us. We are thankful for Him and the faith He has given us.
So even if I could change my family’s past, I would not change a thing.
Ezekiel was a blessing and a gift from God, and I would not trade him for anything. I would not make that trade because of how central he was to us and how he blessed us. Every evening, when we came back from school or work, just hearing him laugh or lying down next to him and talking to him made us forget about all our worries.
Ezekiel reminded us what a family is all about – what life is really all about. It’s not about the daily hustle and bustle or striving for achievements. Ezekiel taught us that the important things in life are almost always the simple things, such as a loving family, even if it is a struggle to live with them. It was such a joy to love Ezekiel and receive love back from him, even if he was not able to articulate his feelings aloud.
Ezekiel taught us that the important things in life are almost always the simple things, such as a loving family, even if it is a struggle to live with them.
Throughout my life I have looked up to my father’s faith. He is a man of few words and does not show love through his words. Instead he does so through his actions and by example.
It’s undeniable that my father’s life was completely changed when God came into the picture. Having visions and words from God … everything was so real and tangible. His is an unshakable faith and I have seen it stand firm over the years. Even though God chose not to answer our prayers for healing over the course of Ezekiel’s life, we have chosen to say that God is sovereign. My father continues to serve wherever God calls him.
My dad occasionally has dreams of Ezekiel in Heaven. He shared one with me where he saw a large swimming pool and many children at the side of the pool, all ready and eager to jump in. Behind every child was an angel. My father saw one child in particular who was fidgeting non-stop and did not want to stay in place. When he looked more closely, it was Ezekiel!
The story comes full circle: The boy who could not walk on this earth, cannot stop moving now that he’s in Heaven.
Jeremiah’s story is from “Call Me By Name”, a collection of 23 stories of Singaporeans with special needs, and their families. It was curated by the Family Inclusion Network, a group of parents and volunteers with a heart to embrace persons with special needs and disabilities.
The book will be available on Gracework’s online store from September 1, 2018.