It has been almost 9 months since our boy was diagnosed with Down Syndrome (DS). Although his diagnosis – 3 days after birth was a shock – the test of time revealed that through the power of prayer, our boy is insignificantly affected by it. Praise God.
However, like most things, as time moves on and people find other things to make themselves busy with, we become nonchalant about the significance of something important – like receiving a miracle that a diagnosis of a chronic disease has barely affected our first born son.
We have had a variety of distractions fill up our time recently. Including applying for life insurance, refinancing, revaluating the house to consolidate our loans, discovering our dog was pregnant and delivering a litter of 10 puppies, meeting their needs (maintaining their enclosure/cleaning/washing/feeding/etc.), as well as returning to work parttime for myself.
It was at work (during a time of which I was redirected for a month to write Individual Education Programs (IEP’s) for students with learning difficulties at a private school) where I decided to share my private information about our boy’s diagnosis with the head of the Learning Support Team. It was wonderful to hear her reactions and encouragement about his progress. I had almost grown used to negative reactions, full of sympathy and sadness that I wasn’t expecting such a positive response.
She also decided to share anonymously about one student who had a similar diagnosis to our son, except this boy had an inversion occur in Chromosome number two. It broke my heart to hear the difficulties and severe lack of comprehension that this boy struggled with, but it recememted the understanding of the miracle of our son’s abilities into my heart. I had become nonchalant. I was even discouraged sometimes, because it was easy to forget the average age for meeting milestones and compare the pace of our son’s milestones with a few other babies of the same age that were racing ahead with theirs (walking at six months). Regardless, our son is doing well. It is a daily blessing to see our boy grow happy, healthy, clever and strong. And I really hope never to take it for granted.
It is wonderful to know that our son has been blessed with good health, despite his diagnosis. Encouraging others around us (family and friends) to share this understanding though, isn’t as easy as I would have liked. Some people have certainly been touched by our story and recognise the blessings of his heath, but we are also challenged at times with stereotyping, doubt and discouragement due to a lack of understanding, distrusting our word/research or judging us with a sense of denial.
Personally, I can confidently say that I have been raised very level headed. I was brought up in a Christian home, but doing life was always practical, with caution and responsibility. I was never really lead to believe that life will always work out somehow or that challenges are only temporary. It was important to understand that money didn’t grow on trees. You had to invest in your future by working hard, choosing a practical career, saving your money and accepting that bad things can happen, so it is your responsibility to be prepared for them. – Not to say that we really wanted to accept these life lessons for some time, but they were always there.
So even though I am a Christian – believing for a miracle and trusting that God has promised good health for my son – I know that I am not in denial. I have always aimed to invest in his development by attending a variety of regular health checks, researching a huge variety of information, as well as attending mother’s groups, play groups and information seminars (like the value of reading to your kids) to provide my son with the best care and opportunities that I can – probably more so then I would have if there was no diagnosis. I don’t expect that I won’t need to invest into his development. But in saying this, every health check is coming back with excellent results, praise God and the few consultations I have had with therapists (physio/OT/speech) have all said that he still has no need for any help because he is meeting all his milestones on time and with no difficulties. I will rejoice, Amen!
If you would like to read more about our progress or about my testimony since he was born, feel welcome to browse the rest of my blog:
My First Born: (1) Unexpected Circumstances
My First Born: (2) Praying One Step At A Time
My First Born: (3) Overcoming The Stigmatism of Down Syndrome
My First Born: (4) Becoming Nonchalant
My First Born: (5) Polite Stereotyping – Down Syndrome
My First Born: (6) Fun, Joy and Giggles – Overlooking Down Syndrome
Thank you.
Keeping Faithful 