Aiden – gone, but not forgotten

“Aiden never uttered a word in his life, but if he could he would have said, I love you and thank you.”

I’ll hold onto these words for the rest of my life.

The best man at our wedding shared these words at our son Aiden’s funeral. To this day I still find peace and hope in knowing that although Aiden’s life was not long, it was full.

Aiden was born with Lissencephaly Walker-Warburg Syndrome a rare genetic condition that impacted the development of his muscles, brain, and eyes. It’s the most severe genetic conditions in the congenital muscular dystrophies group, and so rare that he was just one in a handful of children in the whole world with it. The doctors told us it wasn’t likely he wouldn’t live to celebrate his first birthday.

As first-time parents we didn’t know what ‘normal’ was. We were told we couldn’t take him home after he was born, but from the first moment we saw him we knew that we had to be his voice and fight for his right to live his life to the fullest.  We focused all our energy on making the most of every moment we had together. It wasn’t easy, but I consider every moment a blessing. Aiden taught each of us so much, he couldn’t speak or walk, or swallow well on his own.  He relied on us for everything, so when the doctors asked us where we wanted him to die, we knew this would be one of our most important decisions.  Although we didn’t want to dwell on his death, we knew we wanted him to be comfortable.

The hospitals were cold and clinical, so when we learned about Very Special Kids and the haven it offered families like ours, we knew we had to learn more. We visited the hospice and saw their end-of-life room and family accommodation. This one of a kind places meant that Aiden could receive hospital grade care, in a home environment, for both respite and end of life care.

In the end Aiden died in the hospital, but what happened next turned the most awful time in our lives to one we will cherish forever.

Aiden’s body was transferred to Very Special Kids, the special room preserved his body and allowed our family and friends to come and visit him and say goodbye too. Our Very Special Kids family support practitioner, Jenni was there for each of us, she supported me and my family members as we each grieved in our own way. We could plan his funeral in our own time, and it enabled us to celebrate Aiden’s life. As dairy farmers from regional Victoria and with most of our family in New Zealand, this time in the hospice meant that we didn’t feel alone or isolated, the team at Very Special Kids felt like our family.

Aiden was the best thing to every happen to us and although there is some peace in knowing we gave him the best possible life, the loss and grief of his death is forever with us. At the beginning everyone is there, but as time goes on family and friends move on too. We each grieve in different ways and the grief cycles that hit are unpredictable and at moments unrelenting. Very Special Kids has been with us every step of the way, Jenni knew Aiden and when the rest of our world started to fall away, she’s remained our constant.

Very Special Kids is the only place that exists that gives me permission to be a bereaved mum. It’s a place where I can completely let my walls down and speak about Aiden, he is now and forever will be a piece of my heart, he is gone but not forgotten.

My entire family and I credit Very Special Kids with our ability to cope each and every day, I hope you never know what it is to lose a child, but if you do, just know Very Special Kids will be there.

I know that the support we receive is only possible, because of the support you give Very Special Kids.

Your support gave me my support, and I can’t thank you enough.


To support Bonita and her family, please donate to Very Special Kids by June 30.