230 Bereavement Cards – Live without regret.

 

Our son William made some beautiful friends at pre school and he was invited to a few birthday parties when he was in preschool but once they all moved on into primary school and he started at his Special development school we lost contact with many of those friends and then as he got older those party invites stopped coming.  We only threw a few parties for him, one for his 1st birthday which he cried the whole time, his 5th where he also cried the whole time and his 8th birthday party thankfully was a success, as he actually enjoyed this one.  We had an enormous Lamington cake with sparklers and candles all over it. I remember the interaction between my friends beautiful children as they all bounced up and down on his bed.  He was laughing hysterically at the other boys bouncing too. That would have to be one of my fondest memories of William playing with other children.

William had been receiving on going support through the Royal Children’s Hospital’s Paliative care team for the past 18 months, as both he and his brother both have a very rare life limiting metabolic disease called ‘Adenylosuccinate Lyase (AdsL) Deficiency’. This disease causes neuro toxins to build up within the brain and results in varied degrees of physical and intellectual disabilities as well as frequent seizure activity that is often unresponsive to most standard seizure and epileptic medications. There is currently no treatment or cure for this disease.

Sadly, many of our ‘special children’ are only here for a short time leaving a  broken hearted legacy with their family and caregivers. What I found  heartbreaking, is that about a week before his 9th birthday he became quite unwell with a cold that progressed into a chest infection. So we postponed having a birthday party for him and decided to wait until he was well again, instead we decided on having a small birthday dinner with just our immediate family.  I made a special birthday dinner complete with roast vegetables, roast pork with the best pork crackle I believe I have ever made; along with apple sauce and gravy.  I remember the look on the boys faces as they crunched away on several pieces of pork crackling.

After we finished dinner we took the Birthday cake out of the fridge, his dad lit the number nine candle and the all nine sparklers as we  began to sing happy birthday to him, his face lit up, it was obviously one of his favorite songs.  We helped him blow out his candles and grandma began cutting the cake as we all made a wish. William was just about to have his first mouthful of cake when he began to have a seizure, his dad wheeled William away into his bedroom where we waited for the seizure to stop before laying him down to recover more comfortably.  

We returned back to the kitchen where we continued to eat our pieces of birthday cake in silence.  Although it was common for William to have seizures and particularly since he had been so unwell through out the week, our only wish was that he could get to enjoy another birthday and the simple pleasure of eating birthday cake. We all felt so angry, sad and disappointed for him, it was his birthday and had been more ripped off again.

We got most of our wish as just a few hours later William woke up and even though he was still very drowsy, he thoroughly enjoyed each mouthful of birthday cake that his dad fed to him while he was sitting up in bed. I remember looking over to the 3 birthday cards that were displayed on his bedside table, one of which his brother made at school earlier that week. I felt so defeated and helpless for him, I worried about him becoming more and more isolated. I felt deeply saddened that his social circle was becoming smaller and smaller and as his mother, I felt responsible that I had let him down socially.  I made a commitment to him that day that I would make a lot more effort to create a bigger social circle for our son.  We were his arms, legs and voice and we needed to let people know that he is here and also be his social advocate. 

Fifteen days later on the 18th of July 2016 at 3.50pm, our brave bear William peacefully passed away in his own bed surrounded by the people he loved and who loved him, so much more than he’ll ever know.

“Since you’ve got your wings, we’ve never been the same.”

We have since received over 230 bereavement cards in the mail from friends we have connected with over his short life with us. I can physically see through all of these  cards, that he has touched so many hearts.  I’ve read the beautiful words of empathy, their love and deep sorrow for us.  I know these people lives have been enriched by knowing him and for sharing a little of our journey, and I’ve read, that sadly they too, have their own regret and wish they had spent more time with him. 

One moment that really touched me was a few days after William had passed away, the parent of one of Williams first real buddies at preschool came to my door crying and apologising for not bringing her son to visit him.  William and her son Jack were inseparable at preschool, Jack was so curious and compassionate of William, he would often volunteer to help William in way he could.  He was such a beautiful child and his mother was exactly the same, beautiful thoughtful and caring.  They lived not very far from us and she told me through her tears, that every time they walked past or drove past our house Jack would ask if they could stop and visit William and every time he’s asked she made up a different excuse not too, and then before we knew it three years had passed and her son never got to see William again.  She was deeply distressed telling me through her tears of how sorry she was for not visiting and that she didn’t know how she was going to tell her son Jack that his special friend William from pre school had now passed away.

 

“Regret – Nothing is worse than missing an opportunity that could have changed a life.”

Why do we hold them back? Why do we retreat and hold ourselves back?

Our children innately know about making this connection to another human being they recognise someone in need of help and even as a child they have a desire to contribute, to help and to make a difference. These are the moments that can truly shape our children’s confidence and heart. Instead we get all ‘Adult’ and deny them of that exact experience and unknowingly steer them into another direction.  Maybe its less confronting for us as parents and anyways, we’re too busy with our own big to do list and other more important after school activities.

 “A nations greatness is measured by how it treats its weakest members”.

Its been said that,  a nations greatness is measured by how it treats its weakest members and I believe as parents we must continue to lay the foundations for a great nation.

Children want to know. They have a healthy curiosity and the more answers we give them the more empathy and genuine compassion they will have about disabilities and the better for their confidence and greater for inclusion into the future.

There is nothing more important than connection and belonging, try living with it out for a few years and you’ll know what I mean.  It is one of our basic human needs and a Human Right.  Which is why inclusion is so important for all of us.

“Take the time, to take the time… 

I think we forget, that with our children the small stuff is the big stuff”.

Don’t let regret shape our future, encourage inclusion for all children, encourage them to form kind, nurturing, unconditional friendships while they’re young and before they’re hypnotised by social media and peer pressure.  So I guess that’s before they are 8 years old, right? All children are born with special super powers, and as a combined force they can truly change the world.

 

Nat xx

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Live without Regret.
Let empathy and compassion be your intent.

Natalie Karen