The Life In Our Years
What would you dream that your children become? For most new parents, the potential for their child to soar is limitless. But for some, the challenges of raising a young child become so much more than good parenting and sleepless nights. Zidilife sat down with Alissa Aldrich whose youngest son, Lucas, is diagnosed with Lissencephaly – a rare genetic disease that prevents the brain from forming the folds necessary for neural pathways to connect. The name literally means ‘smooth brain’. The disease is terminal, with no known cure.
“A few months after Lucas was born, he started exhibiting peculiar behaviour. He would cry constantly and arch his back and neck in unusual ways for a baby. He had a series of tests and finally we decided to do a MRI to rule out anything neurological.”
“Lissencephaly is caused by defective neuronal migration during embryonic development – the process in which nerve cells move from their place of origin to their permanent location within the brain. Lucas has severely impaired motor skills, is non-verbal, and is fed by a g-tube. He is at a high risk of having seizures and pneumonia in the future. There is no cure for Lucas’s condition and he is expected to have a significantly shortened lifespan. Many children with severe Lissencephaly often don’t survive to age 10.”
“Many children with severe Lissencephaly often don’t survive to age 10.”
To confront a terminal illness is one of the most tragic human experiences anyone could go through. But to have to watch your child face it – without the strength or experience of life to even begin to deal with their own fate – is beyond comprehension. And yet with no other way out, Alissa and her family found within them the capacity to bear the unbearable.
“In spite of all his challenges, Lucas is such a wonderful and happy boy. Lucas currently attends public school where he enjoys riding the bus to school and playing with his friends. We are so excited to see Lucas gaining strides in all areas of his development no matter how small they might appear to the outside world. He teaches us new things every day. Lucas has taught us to cherish each day and make the most of life.”
In difficult times it can be hard to know where to turn. Finding someone qualified in Lucas’ case is rare; capable support even more so. When Alissa and her husband did find a specialist, the advice they were given would forever change Lucas and his family’s life.
“At the end of the appointment, he stated that parents who come to him follow two paths – 50% of families will go home and never let their child leave the house, as it is the safest place to protect against infection and prolong life. The other half will take their kids out and do everything they can do to enjoy life, with proper safety precautions. We knew instantly that we wanted to give Lucas the most enriched life possible.”
A well meaning specialist could just have easily recommended to be cautious, to play it safe, and not make the situation any worse. But when you have no choice on the outcome, choosing how you get to it is often the most important part. Where others may have seen Lucas’ life path as a straight line, his family have chosen to give him a rollercoaster.
“He has been on an airplane, boat, 4-wheeler, and snowmobile. He has been adaptive alpine skiing, adaptive bowling, and played adaptive lawn croquet. He was given the trip of a lifetime to Florida courtesy of Make-A-Wish. We are not sure what activities the future holds, but you can bet we will be looking for new and wonderful adventures!”
Noah, Alissa’s eldest, has played an incredible role in his little brother’s life. Noah has begun running, swimming, and cycling in mini triathlons – impressive for any child. What makes Noah so incredible is that he doesn’t just bring his brother to the event – he brings him in the event, with Noah pulling Lucas in tow, every inch of the way. Noah could barely swim across the pool when he started. He has now finished 3, soon to be 4 triathlons with his brother Lucas. Most of their triathlons consisted of a 200 meter swim, 3 mile bike and one mile run. For any child doing this alone is a feat, but for an 8 year boy to push and pull his 6 year old 50 pound disabled brother takes heart and dedication.
“The two of them have an incredibly special bond only shared with each other. Lucas always lights up when Noah walks into the room. Lucas is nonverbal, however – they communicate without words, just by looks. Noah wanted to show Lucas what it was like to cross the finishing line and in doing so their special bond has become ever greater.”
No one could ask for more from Alissa and her family – making Lucas’ life fun and happy and full of love is already an incredible contribution. But being aware of the difficulty of giving their own child the care and attention he needs has inspired them to start their own care centre, Lucas House, which will help assist with care for children facing terminal illnesses, and give families the crucial support they need.
“The focus will be to support the whole family through the journey of a child’s life-limiting diagnosis to end of life. The goal of the house will be about LIVING, and making the most of life, no matter the circumstances.”
In difficult times, it’s easy for us to become depressed, hurt, or grieved. It’s easy to place blame around us for how we feel. But then sometimes the adversity we face in our life is so insurmountable, that these emotions are cut off from us. Not because we can’t feel them – we can, and we do – but they lose their usefulness somehow. When despair is so certain, there is little need to despair. And in the face of a certain fate, we may choose to give up – or else we can choose to make the best of our situation – and then some. We may find many of our darker emotions become redundant, and with limited time left, we find the only worthwhile option left is to love.
Lucas’ years themselves may be few in number, but the love shared with his family is a lifetime’s worth. While the rest of us look on at their incredible courage, we may find our own difficulties put into perspective. But more than that, their journey can inspire us all to love a little more to those we care about, and with less conditions. While Lucas may face more difficulties in less time than we may ever hope to know, his journey is still our own. Our fate is just as certain. But if we are to have the privilege of time, let Lucas’ life inspire us not to waste a moment of it.
By Mitch Wilson