This is the third post in my series about living with uncontrolled Infant Acid Reflux (Read my first post Stolen Joy to find out about the condition, how it developed and where our journey began).
People who helped in some way were a lifeline. But accepting every opportunity for someone to take my baby off me also came with its own problems – feelings of guilt that I had to let my baby go to people I did not know particularly well. Having no choice does not make this any easier to accept.
And usually those rare snatched hours of child free time involved a battle between my overwhelming desire for sleep and the need to organise my daughter’s medication, order prescriptions, chase appointments, speak to a health professional or franticly search the net researching her condition or things to help soothe or keep her occupied.
As she got older I could grab the odd five minutes to rest my aching body by lying next to her on the floor – she would play around me for a short while and those few minutes would get me through the next small part of the day.
Despite my husband’s battle to hold down his job, I longed for his return at the end of each day so he could take our daughter off my hands. But after minimal sleep (even the earplugs could not block the screams) and a tiring 12 hour day at work, he dreaded the arrival home and often could not bear to even look at our baby girl, let alone console her. As the crying and shrieking greeted him the moment he set foot in the house there were times he would walk straight back out the front door again. And who could blame him?
We found at a time when we needed to stay strong and united, we were at each other’s throats. Who else do you take your frustration, desperation and exhaustion out on? Our marriage had been ripped apart – the only communication we now had was fraught and filled with despair. I would glance in the mirror at my blood shot eyes and tear-stained face and wonder what was happening to me, to us and our ‘family’.
Around the Clock
When I ventured out the outside world simply saw glimpses of a ‘happy’, ‘healthy’ baby as this was often when our daughter was most distracted or the only time she slept. But there was never a single moment of respite in a 24 hour period for me. Never a moment when I was ‘off duty’. I was constantly operating in survival mode with no opportunity to appreciate our daughter or miss her when someone took her off my hands. Instead, I relished every minute away from her. But it was never her I hated. It was the condition.
Occasionally, we had better days and our hopes were briefly raised – only to have them shattered again overnight. I kept telling myself we could get through this because it was just for a time – we would find something to help her.
And so we lived to try the next thing which might bring her some relief – medications, specialist formula, alternative treatment, a dairy and soya free diet – we tried it all. I would spend each morning trying to force feed my overtired, fractious baby medication while praying for the day something – ANYTHING – might work.
Eventually it started to dawn on me. Will this ever end? I knew of babies who took their reflux into childhood and it frightened me. The desperation increased and eventually the questions turned to me – what did I do wrong? Was it the stress in pregnancy which had caused this or the antibiotics, investigations and radioactive scans?? The prolonged labour?
Was this my fault?
Good Intentions
What worked today would not work tomorrow – plans were not even worth the effort they required to make. So the question is – how do you actually live life like this? The answer is you don’t. You can’t. So ‘life’ goes on hold and you simply SURVIVE. This means eating, sleeping, showering and cleaning were not a part of this season. And it was a long season. Averaging 0 to 3 hours of broken sleep EVERY night with not a moment’s respite during the day for weeks, months, a year. The human body simply cannot survive like this.
There were unhelpful comments like ‘perhaps she doesn’t need as much sleep?’ or ‘at least she hasn’t got a disability’. No as far as I am aware she hasn’t and before you say it she isn’t terminally ill either. But this is what we are desperately trying to cope with right now. So please just help me deal with it, rather than telling me all the things it’s not.
Many remarks were made about our daughter looking so healthy. I wondered what she should look like? She has acid burn on the inside, right? It almost felt like her problems were considered by some as my distorted perception of reality. But occasionally I would come across someone who silently trusted me by accepting what I said without question. This was so validating and I was comforted by this.
I was told to simply enjoy her ‘because they don’t stay little forever’. Phew, I thought. Thank God they grow up. ‘Savour each moment, the time goes so fast’ – for me, not fast enough. So whilst my body ached for rest and my heart longed for her to be peaceful I was told to enjoy her, that it was only reflux and that I was in some way transferring stress.
I was silently accused of being a neurotic mother, but reflux made me one. Or at least look like one. I would have done anything to help my precious girl be more comfortable. And yet, in some warped polar opposite, I was frowned upon by some for not leaving my dear child to cry. She would cry whether I was with her or not, but I was certainly not prepared to leave her alone in pain.
An End for Most
Indeed, the world was full of well-meaning people who thought the best way to help was to compare or offer advice. I tried to talk about how desperately hard things were but was simply met with knowing looks from those who kindly reminded the ‘naive’ first time mummy of how hard motherhood was – ‘Yes, it’s always different when you actually have your own isn’t it?’ Well yes. I didn’t see this one coming. These comments which ‘normalised’ and, as a consequence, trivialised our situation only served to fuel my frustration further as it became increasingly evident to me that this lonely path was not one which many had walked.
Everywhere I went I was battling with other people. So in the end I gave up. I only had enough fight in me for my baby. I found myself torn between the need to get out of the house, where she was more settled, and the overwhelming exhaustion and fear of seeing people. I kept my head down when out walking with her. The prospect of having to communicate with anyone filled me with dread.
The Facebook reflux support group was the place I found other parents who really did understand what we were going through. At 2 or 3 am, while pushing the stroller or holding my baby in my arms, I could draw strength from people I had never met just to get me through another night.
I took heart from the testimonies – reassurance that there was an end for most.
Read my final post about living with acid reflux here:
For help and support: Babies With Reflux and Silent Reflux – a Facebook group which has been a lifeline to me and Living With Reflux – the UK’s national charity website.
Mamma Me and my girl 