“God gave him to us, how can we use this to glorify God?” Parents of teen with cerebral palsy

Baby Bryan was born perfectly healthy. Nothing about the first three months of his life even hinted at what would come.

“He did everything that a typical baby would,” his father, Gabriel Lee, 48, told Salt&Light.

Bryan was born perfectly healthy.

Bryan is now 14, but he can no longer do what typical teens do.

“He can’t do any of the daily living activities on his own – he can’t feed himself, bathe himself, do anything for himself. He is fully dependent on someone to care for his daily needs.”

Bryan is 14 now and the Lees encourage him to walk on his own instead of using the stroller, an increasing necessity as he grows taller and more dfficult to accommodate in a stroller.

Bryan can walk, though. He learnt to do so when he was 11, about a decade behind his peers. Three years on, his gait remains unsteady and he requires support to navigate the stairs.

The disappointing diagnosis

Bryan was seven when he was formally diagnosed with cerebral palsy, a group of movement disorders caused by damage to a developing brain. He was also assessed to have intellectual disability.

Bryan was diagnosed with cerebral palsy and intellectual disability at seven.

Diagnosis at that age was necessary so that Bryan could get suitable educational support.

“Medically, his symptoms were the closest match to cerebral palsy. But what upset us was that they also diagnosed Bryan as intellectually disabled. Basically, they were saying that he wouldn’t be able to learn anything.

“That was a tough season. We were hoping that it would be Global Developmental Delay so that we could continue to find treatment and therapy.”

Gabriel wanted to “just accept it”, but June refused to give up.

“Cognitively he is where he is right now because we didn’t accept the doctor’s words.”

The unknown cause

When Bryan was three months old, the Lees, who both worked as engineers, sent him the same infant care centre they had sent their older daughter, Charmeine.

Bryan with his sister Charmeine. As a baby, Bryan was able to lift his head up when placed on his stomach. In the months that followed, he would lose that ability.

“One day, we got feedback from one of the teachers that Bryan’s crying was not normal. We were very concerned and wondered what had happened at the centre.”

Other anomalies began to appear. When put on his stomach, Bryan used to be able to push himself up and lift up his neck. Soon he lost that ability. During one of his wellness checks with the paediatrician, the Lees received even worse news.

“The doctor noticed that he was having a seizure during the visit. It was a momentary pause where Bryan stiffened.”

Gabriel and June tried to recall if they had ever seen Bryan seize up like that before, but they could not. So Bryan was given an EEG. The results showed that there were abnormal electrical patterns in his brain, indicating he had been having seizures.

They were told that seizures are often the result of trauma to the head or major illnesses. To the best of the Lees’ knowledge, Bryan had had neither. MRIs confirmed as well that there were no dark spots in his brain showing any injury.

Bryan as a toddler. Even the ability to sit up was hard fought. The Lees made sure Bryan got plenty of exercise so that his muscles would be strong enough for him to hold himself up.

“Till today, we don’t know what caused the seizure.”

What they do know is that the seizures are the likely cause of the cerebral palsy.

The need for constant care

Because cerebral palsy affects movement, keeping Bryan active is key to keeping him mobile.

“He needs to constantly exercise. We have to make sure his leg muscles do not become weakened or he will be wheelchair-bound.

“So that’s the balance. If you put him in a stroller, it is convenient but he will eventually be wheelchair-bound.

“Because we exercise him, Bryan can sit up on his own. We put him into training for this.”

Every day, apart from the hours he spends in school and beyond caring for his day-to-day needs, the Lees have a time-table of activities to stimulate Bryan, organised by the hour.

Bryan keeping active.

“To expose him to as much as possible, we read to him, too, or the helper does. We use flash cards to train his memory.

“There is walking, exercising, moving his arms. We keep him walking around the house. It may be a bit boring going around in circles.

“There are massages, so his muscles don’t atrophy. Because once they do, they become frozen and he won’t be able to move. We really don’t want that to happen.”

June gave up her job and got herself trained in special education to better care for Bryan.

June (second from right) with (left to right) Gabriel, Bryan and Charmeine on a family holiday. The Lees make sure to do as many activities together as possible like any typical family.

As Bryan grew – he is now 1.48cm tall – it took more effort to care for him. So a few years ago, Gabriel took on a job that did not require him to travel at all so he could be around to care for Bryan, too.

“He needs one-on-one care. Whoever is caring for him is like his shadow. We always joke: ‘We are his shadows.’”

Because of the effort his family has put in, Bryan can walk, eat solid food, understand when he is spoken to, recognise patterns, indicate his choices by tapping the object, and differentiate his verbal expressions even though he remains non-verbal.

“He’s trying to babble, like a two-year-old. He’s also exploring things like a toddler. His milestones are spread over a long time.

“We try to treat him like a typical kid as much as possible. I show him where we keep his cup, his bowl, what is in the fridge. So if he wants a drink, he goes to the fridge to tap the door.”

The slow acceptance  

Bryan’s care is now a part of the Lees’ life. But in the early years, even coming to terms with his condition was a struggle.

Gabriel struggled for a season to come to terms with Bryan’s condition.

“I went into a state of denial: ‘Bryan cannot be like this.’ Thank God my wife is stronger. That was when my wife took charge, took care of things. She’s more practical: ‘We have this problem, let’s make the best of it and find solutions.’

“I was angry with God. I was very disappointed. People have so many children and they are all okay. I just wanted two. Why did my son end up like that?”

For a season, Gabriel, who had been attending church since his youth, left church. In his darkest moments, he even contemplated taking Bryan and ending it all.

What drew him back was his cell group leader.

“He understood that we needed room to grieve. He didn’t force us or say the church has answers for you.”

Gabriel (standing, second from right) and June (seated, right) with Bryan and their cell group.

As life with Bryan settled in, Gabriel found his way back to church.

There is still a tinge of grief. When Gabriel sees fathers and sons running together, cycling or playing soccer, the sadness seeps in.

“I only need to be able to jog with him and I will be very happy.”

The cause for joy

But there have been occasions for thanksgiving as well.

“We see he is very fortunate because there are some with cerebral palsy who are like vegetables. They have to lie in custom-made chairs because they can’t sit up, they can’t move. Bryan can walk on his own.

Bryan is kept active so that his muscles will not atrophy.

“Compared to typical kids, he is very far off. But compared to others with special needs, he is very, very fortunate.

“We know that God loves us. There have been incidents, falls from chairs where his head hit the ground but (he had) no bruises, no bumps. I know God put His hand there. It is not possible otherwise.”

Each visit to the doctor is preceded by prayer for wisdom to discern when possible treatments are suggested.

“We say to God: ‘You are the Doctor who created him. Plan the solution. Tell us what not to do. Give us that peace when we make the choice.’”

(Left to right) Bryan, Gabriel, June and Charmeine. Bryan and June pray constantly for wisdom to manage Bryan’s care.

So far, the Lees have avoided many treatments that seem experimental. Yet Bryan continues to improve little by little.

He listens to Bible stories read to him and responds at the end of prayers with “Amen”. He was cognisant enough to acknowledge that he wanted to be baptised when their Pastor asked him. Not only did he raise his hands in assent, he said: “Yeah.”

The call to glorify

Having seen God’s hand in Bryan’s life, the Lees made a decision to “use him to glorify God”.

Two years ago, together with two other Christian families who have children with special needs, they published a book of the lives of their children.

“My wife told me one day that she had a dream and God told her: ‘Go do this.’”

Our Faith Journey – Battling with Intellectual and Physical Disabilities is a biography of the three children with special needs and their siblings. Written for children, it aims to create awareness of those with special needs.  

The book June wrote that chronicles Bryan’s life.

“My wife says this is a God-led thing because my wife is a non-book person and yet she can write this simple children’s book.”

The book comes with Bible verses as well as words highlighted for children to pick up new vocabulary. Despite knowing that making it a faith-based book might limit its circulation, the Lees were convicted to carry on.

No local publisher wanted to print the book. Through research online, they found one overseas willing to take on the project. 

“We are just simple people. God opened the door and put different people at different places to open doors.

“My wife says we will use this book to honour God and see what He does with it.”

Proceeds from the book goes to the three children featured.

The Lees at the book launch.

“They may not contribute to society like typical people, but they are not useless. We want to be a testimony to show that they can make a living if the opportunity is given to them.”

The Lees have also availed themselves to sharing their story about raising a child with special needs.

“We are not experts, but we can share how we journey through and how we overcome with God’s help.”

The future surrendered

The Lees are unsure about what the future holds for Bryan. When he turns 18, his educational pathway ends.

At 18, Bryan (in red) will age out of his special needs school.

“We have no plans. We don’t know what will happen after 18. Maybe we might go somewhere where it is not so financially draining. Still… question mark, question mark, question mark.”

What they do know is that they do not expect Charmeine, their older child, to care for her brother.

The siblings get along very well.

“Her brother shouldn’t be a burden to her. If she is willing, that’s another thing. but she is not obligated.

“We thank God that she is very understanding, a very caring sister. They get along.”

Meanwhile, every day is a day of relying on God.

“I tell God, ‘You know our struggles, our burdens. We surrender to you.’ And that’s when God moves.’”

To buy the book Our Faith Journey – Battling with Intellectual and Physical Disabilities, click here.

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