A LITTLE ABOUT US:
When Taytum was five months old our son died in a drowning accident. It’s hard to describe this time, our lives came to a complete standstill. He was our beautiful boy, our everything, one of our two reasons for living.
About a month later, a family member booked us an appointment with a paediatrician insisting Taytum should see one. We were aware she was behind in the milestones, but we were in denial that something was wrong. The doctor told us that she couldn’t see. It sounds ridiculous to say we hadn’t known this, Taytum has less than 5% vision, but we had no idea. Her eyes appeared normal to us.
An ophthalmologist told us that her optic nerves were very small and underdeveloped. And so our journey along the road of her diagnosis began.
It was a devastating time in our lives, to lose our son and become aware our daughter was blind. Yet it was also the time that God revealed Himself to us, and our brokenness and grief was met with His glory in the face of Jesus Christ.
Taytum’s condition was undiagnosed for four years. At first, I expected her to develop in line with the milestones of a blind child (everything delayed by about six months), but as time went by it became obvious that she was not meeting these, and she had abnormally severe developmental delays. The doctors couldn’t explain both the blindness and the developmental delays, and we honestly got over needing a diagnosis before they had finished all the tests they could do.
It was at times frustrating because of all the time in hospital and doctor’s rooms she had to go through, but it was during this time of uncertainty about her that God rooted Himself in our lives and taught us to trust Him, the one true certainty there can ever be. For many years, the death of our son was very raw in our hearts and the tumult of different emotions made everyday difficult to get through, but increasingly we were learning what a gift Taytum was to us.
Her body may function differently, but she has the most beautiful spirit, full of peace and joy. She can’t see, or walk, or talk, but she is almost always smiling or giggling, or in full on fits of laughter and she has taught us to look at life like she does, looking for a smile in every moment. In a time when our world stood still and everything and everyone rushed past, she took us out of the world along a different path, she broadened our perspective as God broke it open in the reality of eternity. To let a special needs child take you out of the world, away from keeping up and fitting in, is precious.
Taytum was four when doctors found a cyst, a fluid filled growth, in her brain which is what they now say puts pressure on her visual processing centre and causes her developmental delays. We have never had a medical aid, so Taytum gets seen in the government hospitals. For her therapy we worked out a home programme based on monthly visits to physios and occupational therapists alternating between the government and private sectors. God always surrounded us with the people and resources we needed in every different place we lived, and He continues to do so.
We moved to the Ballito area in May 2019 with no real plan or purpose what we were going to do here.
By that time Taytum was five and God had blessed us with two more daughters, Eire and Izzy. As they grew into toddlers, I was struggling more and more to give Taytum the therapy time she needed at home, and the pressure on us as parents began to get overwhelming.
I was pretty much googling for help when I came across the website for Bloom. We were amazed there was a school down the road that would consider taking Taytum. Even during her trial week, I was wondering if she would, in a way, be accepted. I had greatly underestimated the huge heart of Bloom and that it is open and welcoming to all children of any ability. Taytum started in July 2019 and Eire, our three-year-old, joined Kingdom Kids at the same time. Bloom were so accommodating, and the staff went on special training for the early education of blind children and went out of their way to make the best programme for Taytum’s school day.
Straight away, having the school routine made a difference. Taytum’s mood regulated to her content self where she had begun to have mood swings. Her sleep pattern improved, and she was much more alert in the day and sleeping through the night. Over the past nine months she has kept making steady improvements in her vocalisation, consistently making choices, and in her tactile sensitivity, meaning she eats a wider variety of foods and explores her surroundings with her hands.
But the best thing about having children at Bloom is how loved they are there, the school bursts at the seams with love. And love is what Taytum needs more than anything.
A friend once said to me, when she got live-in help for her disabled son; “I was tired of being a therapist, I just wanted to be a mom”. I didn’t understand her at the time, I thought I could do both, but now I do. Bloom has lifted the pressure of coordinating Taytum’s therapy off our shoulders, and now we can just be mom and dad, and concentrate on giving her all the love we can when she’s at home. Her team of teachers, therapists and her facilitator look out for her absolute best and she loves school, she has friends who hug her and are excited to see her and she does so many different activities.
Eire has great fun at Kingdom Kids and knowing she is getting a faith-based education at a school full of love for Jesus is a huge support to us as parents helping our children to build a foundation in Christ. We would like to thank the staff at Bloom for all they have done and continue to do.
I think sometime every day I say to God; “I don’t know what to do, but my eyes are upon You” (2 Chronicles 20:12). There are so many unknowns as a parent of a special needs child, so many emotions that can get overwhelming, hard decisions and hard demands to deal with. This scripture helps me to seek God first, and He has always made a way. I pray it might help you too.