Never in my lifetime did I think I would ever experience the pain and horror of losing a child. Such a thought was unimaginable. Now and again you might think “what if” something happened to my child but you quickly dismiss the thought because it is too painful and frightening to imagine; it strikes a nerve so deep that you avoid the subject at all costs. “I can’t even go there”. “That is so horrific, I can’t think about it”. You might even wave a hand in the air as if to chase the thought away, for no words can describe the dreadfulness of it all. Just the smallest notion of your child dying makes you recoil and hide from the thought. Pain strikes you and your heart aches the minute you give the idea any attention.

But it did happen to us. Our daughter died. She was eight years old. She died of a rare disease of which there is very little information about. It is an orphaned disease and is commonly not found until post mortem. Seriously? My child? My sweet little girl? Why her? Why is she now one of the few statistics? What are the odds? The odds are one in ten million and she was the one.

How often do you hear someone say “odds are it’ll never happen to me”? People say this all the time about everything. But now that our daughter is gone, I no longer believe in the odds. There is no more thinking that it’ll never happen to me. There is no more believing that we are immune from bad things happening to us. There is no certainty that we are exempt from the more uncommon events that take place in life. Never say never.

Such a catastrophic event as ours makes one more aware and more exposed to reality than ever before Our thought processes have changed and we look at life entirely different from how we once did. It used to be that we felt more carefree in our daily living and felt more empowered and in control. Riding bikes around the neighborhood is good exercise. Eating grapes is a healthy snack. It’s just a cold that’s hanging on. The fact is kids get hit by cars on their bicycles. Grapes are choking hazards. A cold is a medical red flag. Sounds dramatic? Not for a parent whose child is dead. Do we overreact? Sometimes. Because we know the reality. Are we over-protective of our living child. At times. She’s all we have left.

Do we walk on eggshells waiting for another disaster to come our way? Do we hide in our home and live in fear? No. But we proceed with vigilance and recognize that yes, indeed, it is better to error on the side of caution than to take unnecessary risks, especially when it comes to the well-being of our children. The odds don’t matter.

A website has been established in our daughter's name. Please click here for more information about our mission.

FriendsofAine.com - Aine Marie Phillips

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