My husband, Eugene, and I have two very different and lovely boys. Our younger son, Ean, is a very active, typical 7-year-old. Joshua, our first-born, is 14 years old. He has Down Syndrome, and exhibits some forms of Autism.

Like many parents, Eugene and I were thrilled when we were pregnant with Joshua. We had many expectations and dreams even while he was still in the womb. We started making plans – what to name him, which schools to send him to, which interests to expose him to. These plans came to a halt in 2008.

After a long and painful labour, I was delighted to finally be able to hold Joshua. But I overheard the conversation between the paediatrician and my husband: “Both of you are still young. You can try again”. Immediately I felt a sword pierce my own heart. The next morning, I was told that Joshua was born with Down Syndrome and had two holes in his heart. My heart dropped as I set my eyes upon my small and frail baby. I wondered what life would have in store for him.

The next few months proved to be an emotional roller coaster, as we frequented the hospital for various health concerns. When he was just four months old, Joshua underwent open heart surgery to close the holes in his heart, which was a gamble as he was not at the optimum weight for surgery. The doctors had hoped that Joshua’s severe pulmonary hypertension (high blood pressure in the lungs), would improve after the holes were closed.  Unfortunately, it did not. The pulmonary hypertension caused Joshua to have shortness of breath and resulted in Joshua having to be tube-fed with minimal amount of milk in order not to overwork him. Joshua also had other medical complications such as suspected sleep apnoea, hearing, vision, thyroid, gastrointestinal and respiratory issues.

We finally brought Joshua home when he was about 5 months old. Yet home felt more like a mini hospital with different medical equipment in place. Even so, we did not manage to keep Joshua home for long – at most two weeks, as he would be back at either the high dependency ward or the ICU.

Joshua’s condition hit him worst as he was nearing his first birthday.  His lungs and heart were badly affected, and he required the support of a ventilator. He also had about 30 needles in his little body for intravenous medical treatment. Many times, we saw doctors resuscitate him when his oxygen saturation level fell to 50% and below (a healthy person’s oxygen saturation level is between 95-100%). After more than a month of struggles, the doctors told us they had done their best and there was nothing else they could do to help Joshua. As his condition continued to deteriorate, I started to think about funeral arrangements. I even tried to picture how small the coffin would look like.

As these plans flashed through my mind, my in-laws asked if we would like to attend the 2008 Lourdes Experience – a healing event which took place every 5-6 years for those who sought healing and were unable to make a physical trip to Lourdes in France.  We hesitated as we were afraid of not being with Joshua during his last moments.  It was with a very heavy heart that we attended the Lourdes Experience in December 2008.  There, I cried out to our Lord in my heart: ‘Jesus, if you think I can be a good mother, keep Joshua with me and I will look after him. But heal him completely so that he can lead a quality life. If you think I cannot be a good mother, bring him home. I am willing to let go.’ 

On the third day after the 2008 Lourdes Experience, the hospital changed the ventilator which supported Joshua’s breathing without our knowledge. Unfortunately, while changing the ventilator, the one and only nitric oxide machine which Joshua relied heavily upon to control his high blood pressure failed.  We could see the doctors frantically making arrangements to transfer the only other nitric oxide machine in the whole of Singapore from another hospital.  Just as we began to fear the worst, Joshua’s oxygen saturation improved steadily and maintained in the 90s without the support of the nitric oxide machine!

It has been 14 years since that unforgettable day, and Joshua’s health has certainly improved. In stark contrast to his shortness of breath early on in his life, today, Joshua runs like an ostrich! He also enjoys similar interests with other teens of his age, such as music and swimming. Over the years, we have learnt that health and happiness for Joshua is so much more important than the expectations, dreams or plans we had for him. In fact, I have come to realize that a safe and warm family environment is the best thing we can give to Joshua while we continue to be hopeful and persevere through this journey, even if at times, the difficulties might seem impossible to overcome. We are grateful to God and those whom He had placed on this journey with us - family members, other parents of children with special needs, teachers, volunteers, doctors, nurses, therapists, volunteers, people keeping us in prayers and even strangers who give us an assuring smile in the public! It is certainly true that when we acknowledge our vulnerabilities and are open to receive help from others, it expands our ability to give more to Joshua, and goes a long way in building a strong family where love flourishes!

Contributor:

Contributed by Caslin Lee.

Caslin and Eugene are parents to 7-year-old Ean, and 14-year-old Joshua. Despite a challenging opening chapter to life, Joshua and his family have emerged from these experiences more united and resilient, and parents Caslin and Eugene are determined to continue building a loving and flourishing home for their two lovely boys.