Living in Christ, Living with disability – Calis Roberts

I expected a normal pregnancy with no thoughts or focus on disability, having no family history or experience of disability.  My son was born at 30 weeks gestation, 10 weeks premature, the third of three children. He had a birth weight of 3lbs.  After birth he was incubated for 6 weeks during which time I had to visit daily, while caring for two other young kids. I am blessed to have a supportive spouse who shares in the experience throughout.

I noticed that as he grew, his milestones goals were not being achieved, as he did not roll over or sit up at the expected times. This triggered questions in my mind. I kept raising the issue with his paediatrician whom he would visit on a monthly basis because of his premature birth, but was constantly reassured that this is normal with premature babies. Furthermore, since I often hear that boys develop slower than girls and our two previous children were girls, I did not have the benefit of specific experience to provide explicit guidance regarding the developmental milestones.  I kept being uneasy about his milestone development and was led to enquire about having him assessed for developmental delay. Never did the thought of disability cross my mind.

A referral was promptly made to the specialist paediatric consultant and this resulted in the diagnosis that would change my family’s lives forever. We were asked a number of questions about our observations of his growth and development and tests were conducted. The consultant was very reassuring and professional which made the diagnosis much easier to handle. Of course, over the next couple of months we were to realise the impact of the experience and what it would mean for us. We had on-going hospital visits, tests, sleepless nights, questions and more questions from the specialists, and above ALL, the Chief physician – God.

Diagnosis of his disability at a relatively early point in his life meant that we were still unaware of the limitations that it would place on him and the demands on our lives as a family. It was reassuring to hear that Cerebral Palsy is a non-progressive disease. That is, the extent to which his brain has been affected would never worsen with time. However, the joy of this disclosure is dampened by the realization that at a young age no one is sure how the level of damage will show itself in his daily life. There are so many variations to the disease and how it affects individuals that predictions as to the quality of life are largely futile. There is also the fact that as  we could not see the extent of his disability, we were prone to hope for the absolute best, including full recovery. This led us to trust God that he would be able to walk normally, be articulate and socially responsive and if not win a gold medal in athletics competition at least become able to hike unaided with the rest of the family. Subsequent developments suggested to us that some of these hopes might not be realized.

My faith, informed by the Bible, says that I have every right to expect that our children will be well and healthy. To experience otherwise will always force one into deep reflection and for some re-thinking of exactly what they believed in the first place.

Throughout my experience as the mom of a disabled child, I have found that God’s grace – His undeserved favour – continued to follow us. Following on his early diagnosis, we were able to get him registered with a special education register in the UK. Many children complete their entire primary education without being registered, despite having severe educational needs. Health and educational professionals were supportive throughout this process. When it was noticed that he had no intellectual challenges or learning disabilities that would prevent him from engaging in mainstream schools, all support and guidance were given to facilitate his transfer to a mainstream school that had experience of dealing with children with his condition. Numerous friends and the church family have been supportive in very necessary ways and at times when things seemed impossible, God’s light always shone through.

Even after his subsequent diagnosis with Epilepsy, in addition to Spastic Diplegia Cerebral Palsy (condition affecting only 2 limbs – in his case, legs) and Developmental Delay, we found that as a family we were able to cope. His sisters are always ready to look out for him as well as push him to the very edge of his physical competence. We continue to thank God for his grace and the opportunity to serve Him.

After nearly four years since his diagnosis, we continue to be delighted by his abilities and his interaction with his siblings and peers – far more than we are deflated by his limitations. He has shown a startling desire to learn and a level of independence that convince us there is meaning and significance even in our unexpected and unpleasant experiences. We have learnt to praise God, even when doing so demands a greater sacrifice than we have hitherto expected.

Mrs Calis Roberts is a full-time homemaker and mother who lives in the UK while her husband completes PhD studies in Religion.  She previously worked in the remittance and security sectors.