Introduction
This story is my way of explaining my purpose and dreams for Sean’s Club. I am neither looking for sympathy or trying to illicit donations using this story – that’s up to you and your belief in my plans. It’s a great story though of how one child battled it all to be here with us today and how he changed my life and others for the better. Were Sean not Sean I wouldn’t be writing this and hence this project would never have been born and I feel of maybe all the good things that I have done in my life to date this might be the most noble.
By telling this story I hope that it helps others in similar situations by way of the bridges crossed and that all is never lost! It will raise awareness I hope of all the hurdles that can be faced by parents of not just Down Syndrome children but any child with a disability in Japan. I keep repeating this quote from the scholar and teacher Forest Witcraft to myself as it drives me on to get Sean’s Club running:
“A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove… but the world may be different because I was important in the life of a child.”
I have to say that what I am about to write already has me very emotional……..
Birthday – 5th August 2008
On a beautiful morning in August 2008 my wife went into labour a month early with Sean. My wife Boksoon is a Japanese doctor and as with our first child it wasn’t until the contractions were at a point that my own Blood Pressure was through the roof that we setoff to Aiiku Hospital in Hiroo. Aiiku is where the Emperors Kids were born and supposedly the top maternity hospital in Japan.
Boksoon had been meticulous with screenings etc. at Aiiku and everything was tiptop from their pre-natal analysis.
When Sean came out he screamed and roared and the maternity team told me has a very genki child and all was well with the world- What a relief when you hear those words!! – all is well, all is well!! The world changed 15 minutes later.
I nearly dropped when the Doctor then told me that they had gotten it wrong, not only did Sean have heart and breathing problems but that he was probably a Down Syndrome child. This shock was short lived as they then told me that my wife and child were going in an Ambulance to an ICU heart unit in Another hospital and then in a flash they were gone!!
I won’t forget the unfeeling bedside manner of the Doctor that day nor that I was now standing outside Aiiku Hospital with my wife’s suitcase for her hospital stay alone. It was the look on my poor wife’s face that still haunts me, the terrible pain in her eyes.
Anyway, with what I can only associate with a form PTSD setting in I made my way to ICU at Hiroo Nisseki Hospital. This was not the end of our travels as on the 11th of August 2008 Sean was moved to Sakakibara Heart Institute.
My little daughter Kutani was bewildered by what was happening especially that she wasn’t allowed into see Sean. On reflection, we could have done more to help Kutani through this time.
Open Heart One – 14th August 2008
Sean was not born with VSD or ASD which affects 1 chamber of the heart but had won the lottery in terms of holes in the heart. Sean had a Complete Endocardial Cushion Defect which is a hole covering his whole heart. Sean was also diagnosed at this time with Tracheomalacia but I will cover this later in my story.
On the 14th August 2008 Sean had lifesaving heart surgery to repair one part of his heart. Sean was to weak and small for longer term heart repairs.
For the next two months Sean remained in ICU at Sakakibara Heart Institute.
My daughter Kutani eventually gets to see her new brother and he’s thankfully alive.
Home – 5th October 2008
What seemed an eternity was over – he was finally coming home and we were overjoyed at the prospect of some peace in our family – we understood that our lives would never be the same and that we had some other mountains to climb.
Thank you, Sakakibara Heart Institute!!!
Thank you, Auntie Nu Nu, for giving up your job in Ireland and coming to help my Mammy and Daddy!!
Warrior Years – October 2008 – August 2011
It seems an eternity ago and perhaps a bad dream but going over things again just strengthens my resolve in Sean’s Club. People often say, “these things are sent to try us!” – well try us they did. But in the end, here we are and what didn’t kill him made him and us stronger!!! I guess!!!
The Tubes
I found the feeding of Sean the most difficult phase of the warrior years – putting a tube up his nose into his stomach whilst trying to avoid putting it in his lungs was a nerve racking experience and must have been awful for him. Whilst a lot of literature say that parents get used to this quite easily I found it difficult every time. The photos say it all!! Anyway, Sean gained weight and after 9 months he started to feed finally from a bottle. Sometimes we just got confused as to what tubes went where and at what time!! Let’s see – CPAP, BIPAP, Food Tube, Oxygen Mask, Oxygen Nose Tube, Inhaler etc. etc.
Dying Spells – The Mask
Sean Suffered also from Tracheomalacia a condition where the tracheal support cartilage is soft such that the trachea partly collapses especially during increased airflow. This can lead to dying spells where the trachea collapses causing respiratory failure.
I remember coming in the door from work once and my wife was giving Sean mouth to mouth resuscitation and he was literally blue.
Treatment for this ranged from medical management over mechanical ventilation (both continuous positive airway pressure, CPAP, or bi-level positive airway pressure, BiPAP) to tracheal stenting and surgery.
We went the CPAP route as less risk and if managed properly a high rate of success whereby a Mask is worn which keeps pressure on his Trachea while it develops. It’s a heart breaker in that the mask must be worn all the time.
My daughter below obviously coming out in sympathy for Sean’s troubles.
I want to confirm that Sean did not find the Titanic on his 12-month dive 🙂
CPAP was 100% successful and Sean now has a healthy Trachea.
Open Heart Two “Pretty in Pink” – 29th January 2010
This day loomed for 18 months and we always knew that it had to come eventually. I will never forget the surgeon taking us through the operation and it seemed an impossible task. Sean was given a 50/50 chance of coming through this surgery. We felt hopeless – all the money in world couldn’t change what our boy was about to go through. A desperation sets in and you live in a constant motionless state of shock and disbelief.
I asked God that if Sean could survive that he could have me instead – I would have done any deal to have my son live through the surgery.
After 12 hours in surgery we were told that Sean’s surgery had been 90% successful – what 90% meant I didn’t even ask at the time – he was alive.
As I walked into the recovery room the surgical team were lined up at the end of the bed as if to say look at what we did!! I could have kissed them all.
When I looked at Sean it suddenly struck me that his cheeks and lips were pink for the first time in his life!! He had been an ashen grey up to this point.
Once again – Thank you, Sakakibara Heart Institute!!!
Sean returned home in March 2010!!! Another Mountain Climbed!!!
Mini Me!!!
A Brother is Born – 3rd August 2010
I forgot to mention that in the middle of this that my wife Boksoon was again pregnant with our third child. I can’t tell you how proud I am of the rock that Boksoon was for the whole family and how relentlessly she cared for all of us including me.
We were happy having a third child although very nervous of the birth given our experience at Aiiku Hospital before. We didn’t use Aiiku Hospital instead opting to use the much more modern Nisseki Hospital. Happily, Robbie was born without any problems.
Given that today Down Syndrome children have a longer life expectancy we needed to think of Sean’s future after we were gone. Knowing that he had another sibling around gave us a little comfort that care would be available after our departure. You need to be pragmatic about these things!!
Robbie and Kutani have been wonderful to Sean and I couldn’t be prouder of them!!!
The Worst Winter – 2010 – 2011
The winter after Sean’s Heart Operation was a tough one and he managed to catch every virus that went around endangering Robbie’s health as well. Eventually both of them were hospitalized together. We prayed for spring that year and the recovery from everything that all of us needed, most of all the boys.
Spring came eventually and with it Sean made a massive leap health wise!! That Summer Robbie was 1 Year Old and Sean 3 Years Old. The tide had turned and we entered a period of calm for the first time in nearly 3 Years. Sean developed a love of curry!!
Japan Kindergarten – HHHMMM!!! – 2012 – 2013
With Sean’s greatly improving health it was now time to address his educational needs. Given his 3 years of illness even a child without Down Syndrome would have a learning disability. Our options given his health issues were limited to a government preschool with no special needs staff or facilities. Japan doesn’t cater the way the UK does in special needs education especially in early years of child development.
It is also at this point that I really started to notice the stigma attached to having a Down Syndrome child and how society lacks the understanding of children with learning and physical disabilities but it is changing for the better and my hope that Sean’s Club can accelerate this understanding in Japan.
In fairness, there are some early learning special needs schools but in a city of 30M people they can’t cope. There is also the issue of no support around the parents for children wishing to attend these schools. It is just taken for granted that the one of parents usually the mother to simply give up their career and basically their life to the child’s support.
We were unsure if it were because of Sean’s constant medical care previously that he was so underdeveloped and we continued to take a positive view on the local school until it was obvious that he was getting nothing from it. It is best described as government sponsored child minding. There are no special needs development programs at these schools. It took us a couple of years to realize that Sean needed help but we didn’t know where to get help or what to do for Sean’s education. I can only apologize to my son for my failure to not recognize this earlier and I can only say that the joy of having him healthy and the respite that we had as a family were maybe to blame. But no excuses!! It was primarily my fault as I knew that the UK had a very dvanced special needs program!
It was Sean’s blank expression and lifeless eyes that bothered me most!
We did have some great family life with Sean finally – Kutani and Robbie were wonderful!! It’s amazing that even at a very young age Robbie seemed to understand that Sean had issues and started his own personal care program.
In 2014, all our worlds collided and my wife and I decided that Sean attend a special needs school in the UK. With my own bridges to cross and Kutani in tow for 2 months and Robbie in tow for 6 months to help with the transition we left Japan for the UK.
It should be noted that we had many options to help Sean – Sean had a British Passport, We had a House in the UK, financial resources etc. etc. Other families in Japan are not so lucky and hence why Sean’s Club is so important to get started in Japan.
I know of other wealthy Japanese families who having experienced UK special needs education with their child did not return to Japan.
UK Special Needs – “The Spark” – June 2014 – June 2016
During the course of my year in the UK with Sean I felt that a weight had been lifted for a world of reasons. That year with Sean on my own helped me understand truly what his life and world were like. I had to learn a great deal very quickly to help Sean. Not only was there the arrangements for Sean’s school to be made virtually in 6 weeks but I had to learn all about his medical care and how to transition him into the UK National Healthcare Systems.
I was amazed firstly had how much more advanced his medicines were in the UK. Children’s liquid heart medicine, Pediatric Breathing chambers, chewable tablets etc., etc.
I managed to take the administering of Sean’s Japanese medicines from 45 minutes to the administering of UK medicines to 5 minutes. I will try over time to populate everything I learned under my UK medical resources page. This was just incredible and when my wife who is a registered Japanese Medical Doctor was also amazed when she visited that Christmas.
Sean went to Riverside special needs school in Antrim and it is a mecca to Special Needs Education with the most highly trained staff, special needs educational equipment and programs. Speech Therapy and Sensitivity play important roles in UK Special needs education and there is great co-ordination between all the educational and governmental health departments such as the Child Development Centre.
It’s hard to compare it all with my experiences in Japan but simply to say that the UK system is devoted to children with both physical and learning disabilities.
I will again try to expand on all this overtime and build on my UK educational resources page.
This next page is just to highlight what the spark did for Sean – I hope you see the changes that we did??
Can you see it yet?
Well?
Come on??
Thank You to everyone in the UK!! Dr. Alison Livingstone from the Child Development Centre, Caroline and all the folks at Riverside Special Needs School, Marlene Adams from County Hall, Andrea his Car Buddy but especially my Mother and Father who helped me in that first year in the UK and my sister Daire for looking after Sean while I made it home to Japan in 2015.
It was my mother in April 2014 who asked me to draw something for my father’s Birthday and first put the notion of Sean’s Club in my head.
This is the drawing for my father’s birthday card!! I hope you Recognize it???
Japan Special Needs – September 2016
Sean returned to Japan in July 2016 – Yippee!! He’s home but I promised myself that his return would be followed by Sean’s Club.
Sean armed with the Spark from the UK set off to his first day at Japanese special needs elementary school in September 2016!!
His world changed in the UK!! Help me to help other children get their own Spark!!
To Be Continued…….
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