Day # 31 – “What Was It Like To Of Raised A Child With Difference?”

This morning on the Channel 7 Tv show Sunrise – hosted by Melissa Doyle & David Kosh. The segment that came on was titled “The New Documentary About Autism And Fatherhood – A new film looking at the journey of 12 Aussie dads, brought together because of their love of their kids and their experience of raising a child with autism.

See Autism & Fatherhood Segment Here

Autism (a broad definition of Autism is a developmental disorder characterized by troubles with social interaction and communication, and by restricted and repetitive behaviour. The main features of autism are difficulty in social interactions and communication, and restricted and repetitive behaviours and interests. Children or adults with autism may be highly intelligent, of normal intelligence or have learning difficulties).

kidsdisabilitiesSo “What Was It Like To Of Raised A Child With Difference?”

Well let me tell you that whilst the above segment was on autism I want to talk with you about Spina Bifida, Split Cord Malformation & the true definition of my son’s life long illness Diastematomyelia.

Sean may not have been born with Autism as the above clip on autism is showing… but all children with difference bring a degree of special care to the very families that they are born into. My plight here is to draw a spotlight to the very children that are born into this world with the greatest of lessons to teach.

Sean was born on August 30th 1997. He was being born as Princess Diana and the car that she was riding in was involved in a tragic accident. As Sean was being brought into the world; the death of Princess Diana was being broadcasted to the world.

Sean was a breach birth bum first delivery (our first) and was born weighing in at
7 pound 4 ounces… he was of course beautiful and the pride of our lives.

STEBUBHours after his birth he still hadn’t stirred and wasn’t at all interested in being fed. Lets not even start with the lack of nappy changing. A few hours after the sun rose over the sky lines of the lower Blue Mountains; we were having our Mum & Baby checks and heading home. Sean was discharged from Nepean Hospital in Penrith and we were on day 1 of the rest of his life.

I happened to noticed on day 1, upon returning home with Sean in arms that he had a dimpled area near his bum and his bum crack was more or a like a zig zag line. I was to see the doctor and the midwife in the next few days and I would bring up my observations then.

Fast forward  a few days he was very unsettled.. apparently acting like he was full of wind.. still not doing the normal nappy changing moments that every other parent had warned us about…

On day 18 I became overwhelmed and very tired… day after day, night after night, no sleep, no rest, no naps and certainly no rest for a tired and weary me. Sean’s Dad had already ventured back to work and Sean and I were on our own… from 5am – 6pm Sean screamed cried and became even more unsettled than he had been in previous days.

Diagnosed with colic, and sever windy belly.. we were told things would soon settle down.

We lived at the hospital and like most parents we soon became more than tired, we were so overwhelmed, the tension was huge.. what were we to do with a baby that we couldn’t console?BUBAWA

Many tests later on that dimple & zig zag bum crack… and we were told that he may have Spina Bifida. We were beside ourselves… but finally I was relieved to know that I wasn’t exaggerating what it was that Sean was going through in what seemed & felt to me to be only happening in the hours when Daddy wasn’t home.

Hospital visit after hospital visit…. sometimes 4 days a week… we were regulars in the emergency room at the Westmead Children’s Hospital. Doctors looked at me and talked about me as if I was just another Mother who was short fused lacking sleep and in need of an attitude adjustment (of course I was…. it was seemingly in my head… his crying only happened when we were at home and not in the car for hours at a go).

A few years later another round of tests, again to confirm the existence of Spina Bifida, this time that dimple and zig zag bum crack was the question of the day.

Tests done… hmm maybe it is Spina Bifida but the dimple stops .4 of a millimetre from his spine… so lets not do a classification, lets not give you a diagnosis.

There were so many hospital visits and so many tests done between the years of 1997 & 2006… I was at the “I’m going crazy phase of my life.”

Sean began kindergarten like every other child…. he started school on time with the smallest of troubles.

seanplay1-e1541436296826.jpgDay 1 of school came and his uniform looked huge on him.  Leading up to his beginning school days his size 5 uniform under went his uniform was purchased at a size 5 – two alterations and like magic his uniform was made into a very small size 3.

We didn’t see how big his uniform was until his socks didn’t help to fill his shoes so two pairs it was. the saga wasn’t over, as he walked to school his shoe flew off as he marched proudly to school. Barely at school his pants started to swivel down and that was enough for Sean  he was screaming “if this is what school is going to be like I am going home.”

He did make it to school that very first day… pants and shoes tied on many many times. He was so small that you only had to scan the sea of kids to see where it was that Sean was. There was always a little void in the middle of the crowd of friends that Sean had… he was easily spotted… that is by anyone but the poor lady serving at the school canteen, all they ever saw of Sean was a hand waving a fist of coins… saying “hello can anyone see me” … soon Sean was so well-known at school that he was given his own line at the canteen door and was served in most cases before everyone else.

I could go on for hours about Sean’s moments where he was sick or spent long hours in the emergency department of the Westmead Children’s Hospital but we will jump to 2006 where Sean was 9 years old.

2006 came around… another specialist that I could use my well-developed attitude on came into our lives… I had just given birth  to my 3rd child Katijana when doctor god knows what number came into the room to sprout his medical mind and thoughts.

Mr Burns I affectionately called him; he told us that he had read all of Sean’s medical records & that he was up to speed and knew of my attitude towards doctors and their lack of  diagnosis of Sean’s issues.

Sean was 9 years old in 2006 and was well versed in the hospital’s need to explore what was happening to his very tiny body. Sean was 9 years old but was at the size of a 5-year-old… Mr Burns a paediatric neurologist  looking at me with his stringent look “if I can’t help you to figure out what was going on with Sean, no one can.” He asked us to give him two weeks to re-run a list a mile long of tests… (raised eye brows – here we go again).

2 weeks to the day we met Mr Burns at the Westmead Children’s Hospital Specialist centre expecting nothing more than a hell wind of blah blah blah. Mr Burns looked at us concerned and said that Sean indeed does have Spina Bifida & a rare form at that. He proceeded to tell us he had found what was wrong with Sean, why did no doctor before him find the answers to our what’s up with him questions?

The Diagnosis:

seantan.jpgSplit spinal cord malformation (Diastematomyelia) (SSCM) is a rare form of spinal dysraphism in which a person is born with splitting, or duplication, of the spinal cord. It may be characterized by complete or incomplete division of the spinal cord, resulting in two ‘hemicords.’ There are two types of SSCM. In type I, each hemicord has a full protective covering (thecal sac) and they are separated by a bony structure, forming a double spinal canal. In type II, the two hemicords are surrounded by one thecal sac and there is a single spinal canal.

This isn’t Sean’s full spectrum of his bodies issues there is far more to his Spina Bifida diagnosis and many of the issues that he suffers from will simply be manageable by altering his day-to-day activities. Others like his stage 1 kidney issue may some day rear its ugly head in years to come.

In that same meeting with Mr Burns, he told us that we had two options in trying to help Sean.
1. was to do nothing at let him go through his life and hope that he learns to manage his many issues and or limitations.
2. was to do a 6.5 hour operation incorporating micro surgery to remove a bony spur that was working to sever his spinal column and the nerves that were running down his spinal column.

If we chose option 1 he may be walking down the road or even kicking a ball and his spinal column could possibly just snap and leave him unable to walk or worse. If we chose option 2 there was a possibility that he may never be able to walk again, or even at the best case scenario walk with a limp.

Option two came with a war wound, a scar that would run from the top of his spinal column (neck) to the bottom of his spinal column (zig zag bum split). Oh yah the  360+ suture  line would be his forever scar & reminder.

We were asked by Mr Burns to go away and talk about the options & come back a week later to talk with him about what we wanted to do… but not to be out done Sean sat up and after listening to the conversation that Mr Burns thought was way above his capabilities of understanding asked “Do I Get a Say?” Mr Burns looked at me with concerned eyes and I told him that we had raised Sean to understand what his body was doing to him. I understood that he was 9 years old but I felt from day 1 that Sean should always know the truth for in the end it was he who had to deal with every surgery, every test and every poke and prod.

With a nod Mr Burns gave Sean the go ahead to tell his point of view and his reply blew me right into my tears. Sean spoke clearly and openly about his choices and added that he wanted to have the surgery saying “if I am going to lose the use of my legs then I would rather do it now, through surgery and not when I was kicking a damn ball.” He went on to say that he couldn’t continue on the way that he was, that he was struggling and now we knew what was wrong with him that it was time to explore what could be done.

Sean was 9 years old and making life long decisions, he told me “you gave me the voice and the awareness of what my body needs… we all need answers .. I need this surgery.”

The decisions were made and the pro’s and cons were talked about and within a week we were admitting Sean to hospital and submitting him to a surgery that we weren’t sure he would walk out of.

So I bet you wondering why it is that I called Sean’s paediatric Neurologist Mr Burns… well simply putting it he looks like Mr Burns from the Simpson’s… but he wasn’t a grumpy old man he was a man that the he knew how to fix my child.

Baby in arms, another staying with his grandparents for an undefined time and another undergoing surgery we stayed in the grounds of the Westmead Children’s Hospital for what seemed forever. 6.5 hours whilst Sean went under the knife. Later we were paged to meet Mr Burns in the recovery waiting room of the hospital… he came into the room a little after we did….

He looked exhausted and so were we… and suddenly he collapsed to the floor in a crumpled mess… holding his hand, I cried for him… he looked at us … happy tears is all he kept saying.

Pulling himself to his feet, he started telling us about the surgery but stopped… I have something else to tell you… “Sean is awake and asking for Mum….” Mr burns went white file289.jpgagain , still holding his hand Mr burns went on to say “You know how I told you that it would be 48 hours before we knew if Sean would ever walk again” we nodded well he said “I patted Sean on the leg and told him I will go get Mum… back in  a moment”…. Sean apparently out stretched his leg kicking Mr Burns… thinking it was a reflex action Mr Burns patted him again this time in the other leg…. Sean kicked him again….

Mr Burns was in tears “Our Baby Will Walk Again…” he announced over and over again.

Post surgery Sean was coming on leaps and bounds he was doing pretty well … in a lot of pain and was sleeping very little but in true Sean form he was doing great.

Then day 3 post surgery came by… Mr Burns and his team were coming down the hospital wards hallway heading to Sean’s bed side.

Mr Burns had a present for Sean; a candy red wheel chair, brand new.. beep beep new wheels…. Sean took one look and said no way I can walk, I can feel my legs, get it away I will walk !!

Sean wasn’t having the wheel chair and pleaded with his doctors to give him the chance to walk…. he began throwing my words back at me once again… the very words that I had for many years had been telling him “listen to your body, it will tell you when you have had enough… trust that it knows what it wants.”

How could I argue… Mr Burns conceiting “ok – let’s try”

Sean got up on his wobbly bed ridden for days legs.. stumbled and screamed “I can do it”
up and back a few steps at time through the hospital hallway.. ” see I can walk … that wheel chair isn’t for me.”

Skipping through a few years…
Sean is today 21… he drives a car and works many hours at a local restaurant and till recently, also a local theme park.

Sean allows his body to rest when it needs to be rested. He continues on a medicine regime that is far less than it has ever been. Sean’s testament to himself is that he very rarely complains… & he has never asked the question “why him?”

So the question that is being asked in today’s blog post and in todays segment on Sunrise – “What Was It Like To Of Raised A Child With Difference?”

seankelly2018The answer will never be the same for any parent being trusted into a world of uncertainty. Having a sick child is never any fun, and having a child with a life long illness can often leave parents burned out and struggling to come to terms with the questions that plague them in their darkest hours.

We are no one different in our darkest hours, of course we have cried and longed for a miracle fix… why Sean? we have asked many a times. We believe that we have done the best that we can and have been ridiculed many a times for the way that we have raised Sean. Maybe some parents believe that a child should be protected from the adult information that we must as adults take in and learn… other parents have told us that children should be protected & should never have been subjected to all that he knew… but I tell them this… “we have raised our child as we see fit, clued on and in a world where he was always involved in the conversations to what was needed & had to be done to help him.

Of course we care for what others think… & at times we too wanted to wrap him up and protect him from the diagnosis that we grew to know… but on the flip side Sean is in touch with who he is… he is a well-rounded, hard-working, well respected and a much-loved young man who has turned many corners and has grown an autonomy that is self-governed and he is today very much independent in his own life’s wants.

Sean lives a life that delivers a can do attitude… he lives a full life, enjoying what it is that he loves doing or attempting to do. He has a huge self presence… & when he is having a bad day from time to time he simply.. takes a moment out to medicate, relax & recover and then gets up and climbs life’s ladder and gets right back in there.

So “What Was It Like To Of Raised A Child With Difference?”
Well its tough, its lonely, its full of criticism from the many people who pop in and out bringing forth their opinions.

spinabif.jpgThe best advice that two parents that has been there and done that is to simply “hang in there… stick to your guns… learn as much as you can & ask many questions… seek more than 1 opinion from a specialist in the know & in the end with your arsenal of knowledge make the choices based upon the information you collect… in the end you will know what feels right.” just do the best you can.

Raising a child with difference isn’t a life sentence in a negative aspect, raising a child with difference is a chance to become an expert in a field of knowledge that even text books can not always explain.

Raising a chid with difference is not a journey that will forever be shrouded in tears, take it from two people who know the long hours sitting in tears in a world where no one understands you or your plight to keep your child happy and free from the harsh realities that every illness holds. The darkened clouds will someday lift and your efforts and hard-fought hours will be shown in the goals and achievements by your child who wants for nothing more but to say thankyou for learning how to love me in a way that only you could have done.

Children with difference want for nothing other to be treated like they are no body kellyfamspecial, they want love in abundance and they want guidance in and throughout their lives. Children with difference may have extra needs but in the end they are the same as any other child that is given to us as parents to raise.

The best gift that we have ever instilled in our son Sean is the gift of his autonomy… building up his self presence and his self-awareness is what will keep Sean being him – full of charisma, a warm and loving spirit, cheeky and full of life… neatly wrapped up in a can do attitude but more importantly he is proud that he is a tax payer, paying his way through life, giving to others where he can, fully aware of how far he has come in his life.

“What Was It Like To Of Raised A Child With Difference?” well it is just like raising any other child… no instruction manual… and with no bloody idea how.

Author. Tanya Kelly


6 thoughts on “Day # 31 – “What Was It Like To Of Raised A Child With Difference?”

  1. Tanya this is so beautifully written and so true. I am happy that you have given your child wisdom, insight, and involvement in his conditions. Who better to decide the treatments to apply than him? I respect you immensely that you always sought to find out everything you can and didn’t just accept what the powers that be told you. You and your hubby are his guardians angels on earth. No children come with a manual and all good parents work through what they need to when they need to. Sean’s manual just happens to be many many volumes thick. At some time I would like to talk to you about Z1 and his fight. It is nothing compared to your son’s fight, but again there was no manual and his mom too sought out answers and luckily found some good ones.
    Love you to pieces,


  2. Tanya, this is a remarkable story of how being good parents, modern healing, and the wisdom of your son contributed to a unlikely positive outcome. It was lovely to read, although I’m sure the hardships and challenges were totally sinking at times. So glad your son is doing well now.


    • Dearest Lisa.. in yesterdays hardships I used to feel so alone… I never could understand why the struggles always seemed to find our side of the fence…

      Today I am comforted by the fact that my now 21 year old is a very well rounded young man.

      Thanks For Your Message & Your Words Of Support.

      Regards Tan


  3. Dear sweet Tanya,
    I am so moved by what you have written and it comes at a time it was very important for me to read. Thank you for sharing because I think this is something that many, many parents need to read. Especially parents of this young generation. The medical field is so complex now and just knowing how to navigate and advocate for your child is so critical. Thank you for being so honest but most of all, thank you for loving and raising a young man who will make a difference in his world — our world. Bless you all. Much love to you!


  4. Yes, Tanya, this piece was incredibly moving. I cannot even imagine what you and your family have endured. But you are all resilient and I pray that God will bring peace and joy now and forever. Amen. Hugs from Memarge 🙂


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