The Journey Begins

It has taken me a while to start writing this blog but I thought I would know when it was the right time to put my thoughts into words.

So perhaps a bit of background information would be a good place to start. I am a fifty something married mother of three beautiful girls, who are all following their own pathways in life in their own unique ways.

My youngest daughter Beth is perhaps following the road less travelled when compared to her two older sisters. Twenty-one years ago after having a very normal and healthy pregnancy I gave birth to a very poorly baby daughter, who got into distress during delivery and ended up in the Special care baby unit due to breathing difficulties. I suppose that is where our journey began; a long and arduous road of not knowing what was wrong with Beth and being completely in the dark, as to what issues she was experiencing. When we were permitted by the hospital staff to see Beth, she was in an incubator asleep and that is how she remained for the next three weeks. She never woke for feeds and we never heard her cry. I have the clearest memory of talking to her softly and asking her to open her eyes and look at mummy, so I could say hello. Inside I was gripped with fear and such sadness.

What if she never opened her eyes?

We met with various consultants who rhymed off a series of health issues and potential problems. Beth was floppy, she was suffering from hypotonia, stridor, poor breathing.

We kept asking the question, why? We asked when she would awaken? In the absence of answers we were instead presented with a photo of Beth taken by the nurses at 3 days old, just in case she never woke up.

A tube fed her but I argued that she would never wake up if she was never allowed to feel hungry. They just kept opening the tube every four hours and pouring milk down her. My babies were breast-fed and never were bottle fed babies, so I pushed for the tube to be removed. I think this was the start of me following my gut instincts where Beth was concerned.

So we were given a weekend to feed Beth ourselves we had to reach a certain amount of millilitres of milk every day. My husband, my Mum and I did everything within our power to ensure that every millilitre of milk disappeared and it’s suffice to admit that Beth didn’t always finish the milk but the bottle was certainly always empty when returned to the sister of the ward!!

Slowly Beth began to open her eyes we heard the faintest of cries and we were finally able to introduce ourselves to our beautiful daughter who was ever so floppy and very very sleepy.

We named Our daughter Elizabeth (Beth) which means promise or oath of God and I knew back then, that God had promised to walk us through the journey that lay ahead of my family and I. How did I know? I felt it – it’s as simple as that.

We got Beth home about three weeks later. Her sisters were over the moon their baby sister, Beth, was coming home at last. We however still had no diagnosis as to why Beth presented with the problems that she did. We had appointments with more specialists and geneticists everything drew a blank.

We did, however, embark upon an intensive programme of physiotherapy. We had endless appointments with so called experts examining my beautiful baby and all asking the same questions. We had brain scans, muscle biopsies and blood tests over and over again.

I visited the maternity unit again asked for my notes, to see if they could shed any light on what was wrong.

I looked inward and asked myself what did I do wrong? Did I eat something or not eat healthily enough? Did I drink something? What was wrong with my lifestyle? I spent hours on the internet looking for some sort of solace or anything that would answer my endless questions. To my shame I told myself this sort of thing does not happen to me, this happened to other people but definitely not me. What did the future hold for us as a family, more importantly what did the future hold for Beth.