If you have been anywhere around social media you know two things about England right now, another royal prince has been born, and a baby boy named Alfie is being denied life. Alfie has an unknown neurological disease. He needs a feeding tube and a trach with a vent. These are not extraordinary measures. These are the basic things needed to sustain life. After courts ruled that Alfie’s vent was to be removed, this amazing child started breathing on his own, occasionally needing some oxygen support. Yet the British courts ruled that it is time for Alfie to die. He has not received nutrition, other than water via his g-tube in at least 24 hours that I am aware of as I am writing this. Why are the courts ruling this way? Why are they denying his parents the right to take him to Italy, where a hospital is ready to care for him? They are saying it is because there is no hope for improvement, that he will eventually die anyway, and so why should that not be now. I am not an expert in this case, I have not seen more than anyone else reading the news reports, so why am I writing about this?
His name is Damien Edward Ryan. When he was 4 months old he had a one time seizure event. It left him stuck at 4 months. He was unable to eat without aspirating, and so a g-tube was placed. His vision was affected and we are told, based on other children with the same brain injury that what he sees is like looking through a piece of swiss cheese. Lots of black with random holes of sight. He is unable to sit up on his own, will never be able to stand, or walk, or do more to communicate with us than laugh or cry. He does do some mean half sit-ups though. Seriously, the kid has rock solid abs. In September he will be 11 years old. My husband was told that Damien would not live to see his 2nd birthday.
When I met my husband and his three wonderful children, I knew I was blessed. More than one person told me I was crazy for marrying a man who not only already had children, but also had one with Damien’s level of needs. I’m not going to lie, it has been hard. It is hard to go from being single, living in your parents home, to being a mother of three children. It is hard to learn how to care for a child who depends on you for everything, and always will. It is hard to balance the needs of the other children. Hell, it is hard just to adjust to being married without adding any of the other stuff in.
People talk about hope. Where is the hope for Alfie? Where is the hope for Damien? Yet there is hope. No it is not the hope of a cure. It is not the hope of a pain free life. It is the hope of the cross. It is the hope of the life we cannot see on this mortal earth. Damien, and Alfie have taught more people about faith, about love, about hope than most people can in 10 lifetimes. I can promise you that no one who meets these children walks away unchanged. Maybe we can’t see the fruit of that change right away, maybe in some people that seed is very slow to grow. But it will grow. It will change minds and hearts.
Damien is not a burden. Alfie is not a burden. Charlie Gard was not a burden. They are our best teachers, rays of sunshine in a cloudy world, saints walking here with us. They are the fire that purifies the gold of their parents, of their siblings, of all those who love them.
Damien will leave us. He will go to his heavenly home, probably long before this mother’s heart is ready to let him go. I will cry, I will sorrow, but I will let him go. What I will not do is willingly let him go before his time is up. I will fight with everything in me, just like Alfie’s parents are doing. God has not called his servant home yet. No government, no medical expert, no parent has the right to end the story. God is the author of Damien’s life, God is the author of Alfie’s life, and God writes the final earthly chapter.
“I plead with you! Never, ever give up on hope. Never doubt, never tire,
And never become discouraged.
Be not afraid.”
-Saint Pope John Paul II
Out Of The Chrysalis 