Our last write up looked at making millionaires – often times when we hear the word ‘success’, the immediate pictures that floats up in our minds tends to be careers, assets and bank balances. However, on careful introspection, we find that there are many unsung successful heroes amongst us. These are persons who may neither have the fattest bank accounts nor the most glamorous careers. These persons may never have even been on a plane out of their immediate locale or been on any carpet: red pink or yellow!
These often-unsung persons are successes in their own right. Without some of these persons, many a time, the very obvious ‘emblems’ of success we see would never have been. I beg to borrow a line from the popular singer Bette Midler when I state that “they are the wind beneath the wings” of the apparently successful persons. They are sometimes the engine room, the insurers, the source of succour and encouragement. These “unsung successful persons” are parents and relatives of many a visibly successful individuals. This week, we are taking a dive into the challenges of parenting. What does it mean to be a successful and happy parent? More so, when one has a child with special needs? This week, join LR Team in this space, as we celebrate some of the unsung heroes and successes of our time. Ivan Jr. and his parents.
Wind Beneath My Wings – Ivan Jr. Story
When the LR Team approached us that they wanted to use our family story as a platform to inspire many other parents who have children with special needs, we felt humbled and had no objection whatsoever. We hope our story inspires and motivates other families. Dedication, Perseverance, Tolerance and the list goes on, but the greatest of all ‘Love’ has gotten us going through the years.
Our journey in life started, when I came over to London for my Master’s degree in the year 1990. I met my husband (Ivan) as I was finishing my Master’s program. I had agreed with my Dad that after my Master’s I would return to Nigeria. That was never to be after I met Ivan because even though my Dad kept insisting I come back, I was strong headed and remained. Thank God I stayed on.
We got married in August 1993 at a registry in London. There were only four of us in attendance. It was not until December 1996 that we officially in the presence of our families tied the knot at our traditional and church weddings.
Then we became three – hubby, baby and I. What an amazing experience. I still remember that day very well, and today I give God thanks and praise for Jr.’s life. Our first child, Ivan Jr. was born in August 1997 at Guy’s hospital in London and was given the all clear. Ivan Jr. being our first child was a wonderful addition to the family.
22 months on and we were to receive the shock of our lives. Jr. was diagnosed with a Dandy Walker Cyst, which caused hydrocephalus. In his young life, he has been through a lot and God has definitely been by his side.
It was while on holiday in America in June 1999 having just delivered our second child, a girl, a month before that it all began. On this faithful day I noticed Ivan Jr. a bit dazed and unsteady on his feet one evening. Our initial fears were that Ivan Jr. had been hurt while he was outside playing with his cousins and their friends. My sister-in-law, Mrs Igie Guobadia who had been supervising the children outside confirmed there were no incidents outside. She noticed him falling asleep on the swing and brought him into the house where I noticed Jr. looked a bit dazed. This prompted us to rush him to the hospital, as it was a very unlike Ivan Jr. who normally was full of energy and always running about the place to look so dazed.
On arrival at emergency, the first thing the Doctor told me was that he wanted to do a CT scan of Ivan Jr’s head to see if there was any bleeding. This demand came as a surprise to me as I was not expecting a scan, thinking it might just be fatigue. The Neurosurgeon in America looked at the head scans that were done over and over again. Then pointing to Jr., asked “are you sure this is the kid with these scans?” He said from the scans, JR should be laid up in bed and at best very unsteady on his feet and not running around in his office. This was according to him, “part of Jr.’s brain that controls balance was not formed and he is also missing part of his cerebellum with an enlarged 4th ventricle”. While I was trying to figure out the many medical jargons, Ivan Jr was back to his normal happy self and running around the room.
The next question from the Surgeon in America was one we were used to hearing from friends and family. It was “ has any of your Doctor(s) never mentioned concerns, regarding Ivan Jr.’s head size in comparison to his age”? He explained that for his age his head was rather large, I answered ‘No’, as it had never being mentioned by any Doctor. Only friends and family would joke that he had a big head and we would reply that big heads run in the family.
The CT scan revealed Ivan Jr. was born with a congenital abnormality. The doctor said there was fluid build-up, which made Jr’s head larger than normal and shaped the way it is. He called this condition a Dandy Walker Syndrome, and Jr. also had an enlarged fourth ventricle. I stood there stunned and wondered if I was dreaming. It was a very big shock, as we never suspected anything like this. Jr. up until that fateful day was a healthy and playful child. Being a boy and our first child we just thought he was slow for his age at communicating.
Jr stayed overnight at the hospital for observation. My husband was back in London and I had to give him this upsetting news. He got worried, as he was not due to come to the States until July. Thank God for my Mum, my brother and his wife who were by my side at the time. I met the Neurosurgeon the next day who explained the condition in more detail. I was worried if Jr would be okay for the three weeks we had before returning home to the UK. The Neurosurgeon said it would be best to fit a shunt in London for ease of follow-up reasons. (a shunt is a device, which diverts the accumulated fluid around the obstructed pathways and returns it to the bloodstream. It consists of a system of tubes with a valve to control the rate of drainage and prevent back-flow. It is inserted surgically so that the upper end is in a ventricle of the brain and the lower end leads either into the heart: ventriculo-atrial or into the abdomen: ventriculo-peritoneal). My brain kept telling me “ surely this Neurosurgeon is not actually talking about Jr.? Our delightful young boy, who is full of so much energy, never sits still, and balanced on his feet? Our boy who has no signs of mobility problems?” What a shock it was then to our systems!
Ivan Jr. remained fine for the remaining weeks before we returned home. Immediately we got back home our GP referred Jr. to Kings College Hospital. According to the GP’s notes, Jr’s head had been bigger than average at his six-week and eight month check-ups, but the GP had never bothered to check the chart or mention it. We showed the Neurosurgeon at Kings the CT scans from America. An MRI scan was also done by the Neurosurgeons at Kings. The MRI scan confirmed and revealed pressure was building up in Jr’s head and part of his brain had not formed. I could not believe that for 22 months Jr had this condition. He had cried a lot sometimes – maybe it was headaches. His balance has not been affected much, only his development mentally.
A VP shunt (a tube from his head to his abdomen, to help drain off the excess fluid build-up in his head) was inserted in August 1999, three days after his 2nd birthday. Five months after in December 1999, Jr was diagnosed as having an Autistic Spectrum Disorder. Jr also started having epileptic seizures after his surgery and was on medication to control his seizures. Thank God he has not had a seizure in over 8 years and has been taken off the medication.
In November 2008, Ivan Jr was very ill for a few weeks, and was in and out of hospital. The Doctors could not find anything wrong with him apart from what we now knew. The scans he had done did not show any problem with his shunt.
After about three weeks of Jr being ill, and not wanting to move around, his neurosurgeon decided to do a procedure called a Lumbar Puncture. A lumbar puncture is a medical procedure where a sample of fluid is taken from inside the spine for testing.
Anyway, the test revealed a build-up of spinal fluid in Jr’s Spine. Jr had an operation to insert a lumbar–peritoneal shunt, which is a type of cerebral shunt. His VP shunt inserted in 1999 stopped working, and caused a build-up of fluid in his spine, but the Neurosurgeon has said it is safer to leave the VP shunt in Jr’s head than to take it out.
It has not been an easy ride through the years, but we have pulled through together as a couple and a family. I remember when we had the first diagnosis, as a young couple, my husband and I had to undergo counselling as it put a huge strain on our marriage. I thank God for holding us strong and keeping us to continue on this unexpected journey together. There are times when tears have been uncontrollable, but there are awesome little miracles and praises every day. Having special children has shown us the world in a way that we could never have imagined.
Our second daughter Jada, 13 years old, who has a speech and language disorder, is very much different from Jr. Jada is able to communicate her needs, interact in her own way and is very calm. Jada attends a special school.
On two occasions Jr. has run off while out and about with his carers and sadly got knocked down by a car on these occasions. God with him he only had a limp for some days. We are very thankful to God for these and other situations, as God has been in control.
Initially, for days, when Jr was diagnosed the same question kept echoing in my mind: “Why us? Why us? I have not found an answer to this question, yet it doesn’t matter anymore. Now, we could not imagine life without Ivan Jr. and our other three children. Jr is the most handsome and wonderful young man I have ever seen and he is loved unconditionally. We are with him on a different journey and whatever happens, whatever challenge, we will always be there for him. Always!
Importantly, we have also learned to accept and let go – to grieve what we cannot change and find light in the darkest of days. We can still see the beauty of this life every morning. Our Christian faith keeps us going strong, to live the life we have, not the life we thought we were going to have.
It doesn’t mean the battle is over, it does however mean that day by day we can learn to live with the pains we carry in our hearts and minds in a way that it does not overpower us. We always try to stay positive and have learnt the art of letting go. We choose to stay hopeful and remain positive, as we know love conquers all.
Today, Ivan Jr. attends Tuke School, a school that meets the needs of students aged 11 years – 19 years with severe, profound and complex learning disabilities. At school, Jr. continues to make progress with requesting for items he needs using pictures. He is now able to hold his own tray at lunchtime and walk back to sit at his table with little assistance. When he comes into his class in the morning, he is able to take his bag and jacket to his own peg, which has his photo on it with very little prompting. For the little things he has been able to accomplish over the years, we are so happy and grateful to God. Everyone around him, at home, and at school are continually working with him.
This year as he turns 19, a new challenge faces us, as he will have to move on in his life from Tuke School. We are praying that the best choice and provision will be made for him and that God will continue to be with him wherever he gets to go and grow up as a young man. Ivan Jr. is very affectionate today a young man as he was a child, who loves cuddles and a good laugh. He has improved over the years. This gives us hope, as we know that “with God nothing shall be impossible”.
Our story will be incomplete if we do not first give thanks to God for everything, for the professionals, carers and teachers who have and continue to be a part of Jr’s life. We want to use this medium to acknowledge and give special thanks to our mum’s. Lady Mrs Florence Guobadia (grandma) and Dame Mrs Clara Ibuno (grandma, migwor). They have been there for us through thick and thin, caring for us and their grandchildren (sweet mothers). Without them we probably would not have had much of a social life as a couple. We work together as a team and support each other. Our main concern is Jr.’s development. We thank everyone who has been supportive. For those who are going through a similar journey, we encourage you work together as a team, trust and believe that God knows best and He will carry you through every step of the way, no matter how difficult things may seem.
You can visit Ivan Jr’s website at www.ivanjr.info
Make every day count.
Mr & Mrs Ibuno
However how one looks down the kaleidoscope of success, readers will agree that the story of this family LR Team brings you this week, is one of great motivation and uncommon success. It is one of how to stay strong in the face of unexpected life adversity – our deepest gratitude goes out to all the heroes lurking in life’s shadows because “ like diamonds, formed by pressure and buried deep beneath the earth” they are often the ones surmounting life’s most rigorous challenges making their stories some of our greatest inspirational sources. Also, we acknowledge Bette Midler, in her foresight for supplying us the apt phrase that best describes the ‘heroes in our midst’, which served “spot on” in the title of this article. Lets hear your comments but let none of it be that you have not heard that theme song or seen the film “Beaches”.