All Things Beautiful & Special - Down Syndrome And Special Needs: Special People

Sunday (June 1, 2008) 2.30pm

This was first written on Sunday, June 1, 2008. I was in a somewhat pensive mood that day. I sat thinking to myself. Blogging is interesting. It allows one to freely express one's views online especially in sharing anything general and fun. However, it takes guts to open up one’s personal life to the world, allowing friends and even complete strangers into one’s otherwise private world.

Then, I thought to myself, blogging could be used as a channel of blessing to the people around us and those farther away. It provides a platform for one to share and encourage others who may be going through what we have already gone through as we journal our life's experiences.

So, here I am today, sitting in front of my laptop - to continue from where I left off - moving on to the next topic I would like to share with all on my own blog (enough sharing about our vacation..... at least for now. More coming up next time...).

As I continue blogging, I brace myself for opening up and connecting with the world out there by blogging our journey with our son, Bryan Samuel, age 11 who’s born with Down’s Syndrome. The purpose is to share and encourage others, especially parents of children with special needs, that there is so much joy and love our children can bring. Of course, in reality, there are many challenges and sometimes painful experiences that we encounter in our journey with Bryan Samuel. However, there's also a lot to be gleaned and learned from them, and especially from Bryan Samuel - God's special and precious gift to us.

Looking back to the day when Bryan Samuel was born brought back lots of memories. To conceive again after 2 prior failed pregnancies brought on an indescribable sentiment. It was a cross between joy and apprehension. Joy at the prospect of an addition to the family. At the same time, I questioned my ability to carry the baby to full term and fear of another miscarriage.

The journey from start of the pregnancy till the baby’s arrival was filled with many challenges. It involved frequent visits to the hospital for injections as well as hospitalisation to sustain the pregnancy, not mentioning having to be confined to bed in between. Towards the last trimester, due to frequent fluctuation in my blood pressure and the fact that it shot up so high at one stage - endangering my life and the baby’s - my gynaecologist decided to deliver the baby 5 weeks early through caesarean section. Hence, Bryan Samuel arrived on August 29, 1996.

Like all new parents, I was elated at the arrival of our little bundle of joy, especially the 1st born in the family, thinking to myself that the ordeal I had gone through was after all worth it. Little did I realise that the real challenge in our lives had only just begun.

Our joy was short-lived, and it soon turned to grief. The doctor had not wasted any time in breaking the news to us that Bryan Samuel was born with Down’s Syndrome. It threw us completely off guard. We were utterly shocked and at a loss for words. We had no clue of what Down’s Syndrome was at all. I wished my doctor had been more sympathetic in his approach when breaking the news to us, but it was not to be. It seemed he was more interested in getting the news out and be done with it than to be concerned about our feelings. Hope slipped away and the future appeared bleak.

Visiting our little one in the Neonatal Intensive Care Unit (NICU), looking at him lying on his stomach, face turned aside, sleeping soundly with a feeding tube running through his nose, broke my heart to pieces. How could it be that he was born with Down’s Syndrome. He certainly did not look like one. He looked so beautiful, just like any other cute little newborn in the ward. What is Down’s Syndrome? That question lingered on my mind. I had to find out. When medical tests confirmed Bryan Samuel’s condition, I had to find out about the condition even quicker.

Heading straight for the library the moment I left the hospital, whilst Bryan Samuel remained in the NICU, I borrowed many books on Down’s Syndrome to find out more about the condition. Reading the borrowed books drove me deeper into depression and pushed me further down what seemed to be a dark and bottomless pit. The pictures in the books didn’t help at all. I was very discouraged and feared more for my child’s future. Why must this happen to our baby? What brought on this condition? What would the future hold for him? How would he be able to blend in with society? I had no answers to all these questions. I could only seek the Lord for answers to all these questions, clinging tightly to Him for strength and courage, beseeching Him to grant us grace and guide us in helping Bryan Samuel all the way.

God was good and faithful and still is today. When we first brought B. Samuel home from the hospital, we had to figure out a way to feed him. It often took him about an hour and sometimes, more than an hour, to finish a bottle of milk. With much perseverance and prayers, Bryan Samuel soon began to feed better. It was very encouraging.

However, there were other challenges we had to overcome. Born with a hole in his heart, Bryan Samuel had to be on medication to keep his heart from straining. There were unwelcome stares that we had to deal with whenever we were out with him. We knew we had to be strong for him. We decided not to allow these to bother us and channelled our attention and energy in helping Bryan Samuel.

By the time Bryan Samuel was 4 months old, God opened door for him to attend a special school, which helped greatly in his developmental growth. Every little progress that he made brought great joy and encouragement to us and it spurred us on further. Knowing the Lord is near and that He is with us all the way gave us lots of courage and comfort in moving forward. The Lord’s blessings and favour has been upon B. Samuel all these years. Even till this day, God has never failed us. Just when we thought Bryan Samuel is unable to do a lot of things due to his condition, God has enabled him to overcome life challenges and do things beyond our imagination and expectations. Indeed, with God all things are possible!

The one big lesson I learn through our journey with Bryan Samuel is unconditional love and never to give up. That's the beautiful spirit God has placed within our little one to constantly remind us of His great and unconditional love for us. Smile and be happy, that's what Bryan Samuel never fails to do. How I've learned from him! Smile, have faith and be happy ..... Smiling at the smallest and silliest things in life is therapeutic. It helps to keep all worries and sadness at bay - it costs us nothing to smile really. Exercise faith, which is something we do daily. It is important to have faith. Knowing that there is light at the end of the tunnel often grant us strength and courage to take the next step forward as we continue to run the race. Choosing to be happy and counting our blessings enable us to take our eyes and mind off worldly cares and to appreciate the things in life, however big or small. These are key elements that help us in our journey in life even when things do not seem to go right at times. It's the choices we make that bring about a difference in our lives - either positive or negative. Hence, we choose to be optimistic, thanking and praising the Lord every day of our lives, knowing that His love and grace is sufficient for us.

Here's a video clip of Bryan Samuel singing "Jesus Loves Me".

The song “Stop Right Now” by Spice Girls’ playing loudly in the background jolted me back into the present. Our beloved son, Bryan Samuel, was dancing away to the song, enjoying every moment of it. That was, after all, an item that he’s familiar with - one that he has gone around performing with the dance group that he’s a part of. So you know, this dance group is made up of children with different aspects of disability, but there’s a common trait amongst them i.e. they’re full of energy and they all simply love to dance. They never give up.

Just a short while ago, Bryan Samuel had disappeared into his own bedroom. Wondering what he was doing, I went to check on him and found him putting on his school attire and shoes on his own. He is very excited. He simply could not wait to leave for school. He is very eager to meet all his special friends from the school’s cheerleading team - the Mighty Giants - of which he's part of. They are scheduled to perform at Ngee Ann City Kindness CheerFest 2008 from 4.30pm to 8.20pm. Several more performances followed thereafter.

As I continue to watch Bryan Samuel dancing away to Spice Girls’ song, I mused to myself “Isn’t he lovely. His body swaying fervently to the music and he’s enjoying every moment of it, dancing with much gusto. I’m so proud of him. We have come a long way…. or should I say, he has come a long way, at least in our lives. Wow! How he’s grown, and how time has slipped us by. Bryan Samuel is now 11 years old, going on 12 this August and his brother, Isaac Alexander is already 7 years old.

Here are some photos taken during one of the performances.