Living with the fear

Having a child with a history of oral and feeding aversions can be best described as one hell of a rollercoaster ride, only it isn’t.  People partake in these rides for the thrills and excitement which they generate, their heartrates soar, their endorphin levels go through the roof, the thrills of these rides are nothing short of exhilirating.  Unless of course if you have a phobia for them.

The mere thought of going onto one of those rides has me catching my breathe and breaking into a cold nauseating sweat almost immediately.  I went on once, ‘Space Mountain’ in Euro Disney, at the time the most ‘exhilirating’ ride which they offered.  I was beyond terrified.  You are in the dark, completely, no idea of what lies ahead of you. Now and again you get a glimmer of light or a calm in the chaos of the ride, it gives you a false sense of hope that the nightmare in which you have found yourself is nearly over, except that it isn’t, the knocks keep coming, spiral after spiral, loop after loop, until you feel like you have no hope left and no chance of surviving the ordeal.

Parents and especially moms who have lived through or are currently experiencing and dealing with oral aversion will know this fear all too well.  Even if your little one has seemingly conquered their demons, your fear never truelly goes away.  Every time they don’t finish a bottle you find yourself catching your breath and praying that this isn’t a small warning sign of things to go south.  Afterall, this was how it all started in the first place, bottle by bottle, rejection, resistance and tears, both from baby and mom.

The fear of regression never goes away, it is something that is so hard to explain to someone who has not gone through the same battle.  Every day we live with the thought of ‘is today the day’, every bottle we offer has a little bit of trepidation and fear in it.  We try put smiles on our faces and remain calm if that bottle is outright rejected, but we are beyond terrified that it is the start of the next battle.

And that is the thing with aversions and feeding issues, there are so many little battles that we fight through, but we are never guaranteed that the war is won.  At times it is hard to remain positive and I find in times like this that it is absolutely critical to confide with someone who has or is experiencing the same.  If you’ve experienced it or have conquered it, you will always know that fear, it is all consuming, it is a lonely place and remaining positive takes unbelievable strength, strength that we struggle to find on the rough days.

Dealing with aversions renders us housebound for the most part, we end up cancelling dates with friends and family more often than not. It is a lonely existance to a great extent as all our energy is focused on forming a strong, healthy and happy relationship between our babies and their food, all while trying to ensure that they consume enough to continue to grow and develop.  We arrange parties and events around our routine and schedules, we expect, to an extent, for our loved ones to accommodate our needs, not because we are being selfish, but because it is the only way we have control over an otherwise impossibly complex scenario.  To put things into perspective, it has taken us 3 months to get to the point where our daughter will drink outside of the home. Considering that she drinks a bottle every 2-3 hours, this restricted our lives to no end, but if the choice is between a nice social event or our childs sustinence, well, you know what we’ll choose.  In many scenarios you may also find that a child with oral issues will also only drink from a select few people, or even only from one person.  The pressure this can place on this person is immense, with little opportunities to unwind and catch some much needed rest and reprieve.

I have met an incredibly supportive network of parents who have or who are going through the same struggles.  Our frustrations and fears are shared between each other and often not understood by those around us. Whether your child is 9 months or 9 years old, the struggle continues in some way or form, the fear is ever present.

Along with your own fears are the ever present threats from specialists.  The expectations on your child to grow at a rate that will satisfy a graph is immeasurable. Particularly for prem and micro prem babies,  the expectations set upon them is surreal.  A child born under 1kg is expected in their first 1-2 years of life to gain enough weight to meet up with their full terms counterparts….  If that child is not meeting those expectations within the first few months of their lives, the pressure to perform that is placed on that child and the parents is mind boggling.  So much pressure is being placed on those tiny bodies who have fought so hard to be here, who’s organs and immune systems are still settling and growing in strength.  And as with many of these little prems, they are natural born fighters, energetic little people with a zest for life and exploration that is not often seen in their full term counterparts.  The amount of energy they expel from those tiny bodies is unimaginable,  far more energy that a baby that size would normally be using up.

If you know of a family member, friend or even an aquaintance who is experiencing feeding and oral aversions with your friend, be supportive, offer to pop in and make them a cuppa, bring a choc brownie along, take their minds off their worries, if even only for a few minutes.  Offer support and a shoulder to cry on, remind them of how far they’ve come, but never, ever tell them that their child will eat when they are hungry.  It’s a fallacy that a child will eat when hungry if they are suffering from any number of medical conditions.

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