We recently interviewed Otto Peeters who shared his experiences of being a Special Needs father to Noah who was born with Cerebral Palsy. In part two of our interview, Otto shares intimately of the privilege and challenges of special needs parenting, and the things that God has done along the way. We hope that you are blessed and inspired by this story.
Noah was born with Cerebral Palsy. Apart from a weakness down his left side, he developed seizures from the age of two. Despite trying many different medications, the seizures worsened, and Noah was taken out of Kindergarten after only completing 5 weeks of school that year. To give you a real-time glimpse into a family with Special Needs, attached are some blog posts from Otto’s archives:
May 2015: Noah Turns Six
Today is Noah's 6th birthday! It’s also the day our Neurology team in Sydney examining Noah's case, reached a verdict. They agreed unanimously, that Noah's best chance of a future without seizures, would be having surgery. He is having seizures every 5-10 mins, even while on 5-6 different medications! This surgery is called a 'Functional Hemi-spherectomy'. It is a disconnection of the two hemispheres of the brain. The ‘bad’ hemisphere where there are constant seizures will be separated from the ‘good’ hemisphere that he needs to think and move and talk and learn...and live! The surgery on our little boy's brain will take 10-12 hours to complete.
This is a dangerous operation and there is a possibility (as with any brain surgery) that we may lose Noah. There are also other significant risks including brain damage, infection, and other complications. However, we must weigh up losing some of Noah's functional, cognitive, social, and physical abilities and the gains of (hopefully) achieving freedom from constant bombardment by seizures.
We asked the Neurologists what would happen if we don't go ahead with the surgery. They said, "Noah's quality of life will become increasingly impaired by seizures, his condition will worsen, and he may die in the long term from brain damage". So in the end it's not much of a choice, is it?
10 August 2015: The Surgery
What goes through your mind the night before your son has massive surgery on his brain that might end his life or make it even worse? Fear, anxiety, confusion, nausea, angst, sadness, insomnia, complete loss of control, panic, terror...But when you realise that God is in control, many people are praying around the world, that God loves Noah more than I could even imagine or even achieve myself.....then everything changes!
We have felt all of these things in the last few weeks, but now are feeling immensely encouraged by God's love and the prayers of many. Cath and I both want to thank you all for all your love, prayers and support to us as a family.
I am in the same room as Noah tonight. We have talked about how much God loves him. That Jesus died for him on the cross. We prayed together for the operation tomorrow. It is beautiful to see Noah’s simple faith in Jesus. I felt a deep sense of peace as we prayed together. God is good and can be completely trusted with what will happen in the operating theatre tomorrow.
Tomorrow begins at 5am getting up with Noah for his medication and a shower with a special hair wash. We will then make our way to surgery at 6:30am where he will be 'prepped' with the Anesthetics starting from 8:00am. This is where I will say goodbye....(and "see you tonight my big brave boy!") Surgery will begin from 10am once he is sedated and his airway maintained. It will be complete in the late afternoon with him returning to ICU by the evening. All this only an approximation of events.
Cath prayed over the hands of the Neurosurgeon whilst she visited today! She was more than happy to have this happen stating that "much higher powers than herself would dictate the outcome of surgery." Amen to that!
"You hem me in behind and before,
And you lay your hand upon me,
Your eyes saw my unformed body;
All the days ordained for me
were written in your book,
Before one of them came to be."
2020: Reflections From Psalm 139
Noah is now 11. The surgery has proved successful. One medication remains. Seizures are now rare. Noah can do most things kids his age can do. He struggles with concentration and can fatigue easily. He has lost vision to his left peripheral side and some depth perception. Given his learning challenges, home schooling has been a good solution for us as a family. We are grateful he is able to learn, enjoy and discover the world around him. He can go adventuring with his brothers, who are often his best form of best therapy.
His years of seizures set him back significantly in his learning. However, when his Neuro- Psychologist assessed him last year, he scored right on average for his age in a few key learning areas! She could not find any reason for this as it really shouldn’t have happened. There was no clinical reason for it! It went against all norms. She was dumbfounded. We’d witnessed a miracle – God at work to rebuild our little boy.
Raising a child with extra needs is tough, challenging and stretches you as parents beyond where you thought you would ever go. There are views along the way ‘climbing this mountain’ that somehow show how good and great God is. God is in this with us, and we need to hold on for the ride.
It’s like that analogy of ‘going on a holiday overseas’, and the plane arrives in a different country to where you had planned. The currency, the language, the culture, the climate are all different to what you prepared for. When you start to adjust to this change of country, you realise there are beautiful things here to see here as well. You just need to give up your initial expectations, and enjoy this new country. This country can be an equally amazing place to explore and discover!
Did you enjoy this story? Read the rest of the series!