You may wonder why I am writing this blog and documenting some of our life for the world to see, I'm sure at times I will wonder the same. In the past, I would have said I am certainly no writer and would not have thought for a million years that I would be writing my own blog, but here I am, not just writing a blog but having also written a children's book with more in the pipeline!
On the 16th of May 2018 a little ray of sunshine, named Ava, entered the world and our lives, everything was not exactly how we had expected or planned. On my first night in the hospital I lay there mentally writing a blog entry to document my first few hours with Ava (I'm still not entirely sure where the idea came from) in the hope that the process I went through in organising my thoughts and feelings during that time could benefit someone else going through the same or similar.
Now, I do not believe in coincidences (I used to but that's a different story) and on leaving the hospital, after a few more mental blog entries, a number of family members and friends who had not been aware of my blogging thoughts also told me they thought I should write a blog for the very same reasons I had come up with, so the rest, as they say, is history and this is where the story begins (although like any good movie, there may be some prequels from time to time)!
Ava's Arrival (16th May 2018)
Everyone always says to trust a mother’s instincts, the moment Ava was handed to me I suspected from looking in her eyes and at her little purple unresponsive body that she had Down’s Syndrome. She was taken almost immediately to be given oxygen and put under the heat lamp surrounded by a crowd of doctors. All of the time I asked whether she was ok and whether there was anything wrong but did not dare to ask the question I already knew the answer to as then it would all become reality.
It seemed like forever before she was handed to me, she was floppier than I remembered my other babies, I did not realise that this was also an indicator of Down’s Syndrome. We tried to feed, but unlike my son who latched on straight away and fed for England, Ava was able to latch but one or two sucks and she gave up, nothing seemed to help her feed for longer. In the end in order to get some fatty milk into her we ended up with a midwife sucking milk from my nipple into a small syringe to feed into Ava’s mouth. Any breastfeeding mother knows how difficult it is to try and get that first milk to come through and hand expressing with an audience and someone trying to catch every drop certainly doesn’t make it any easier!!
We had the luxury of just the three of us being left in the delivery suite for quite some time after Ava’s birth. I mentioned my concern about Down’s Syndrome to my husband who quickly reassured me that all babies looked like Winston Churchill and he certainly couldn’t see what I saw in her eyes. Despite this, my instincts were still telling me I was right and he was wrong. We took some photos of Ava being held by me and her Dad to send to our other kids, parents, siblings and friends. I made sure that I took them at an angle so her facial features were not as obvious, I wanted to be sure one way or another before revealing to the world.
Once we were on the ward my husband stayed until we got settled, it didn’t take long for Ava, she was the most chilled little thing, but still did not appear hungry. My first daughter had been similar so I wasn’t too worried at that stage. After my husband left, that’s when I started googling the signs of Down’s Syndrome in babies and trying to find out whether it was normal not to be told if doctors had suspicions.
I inspected her hands for the single palmar crease; it wasn’t there, she had two like me. I moved to her feet, did she have sandal toe? No, I inspected my own toes to compare. She didn’t appear to have a larger-than-usual gap. I looked back at pictures of my other children to compare their facial features, were her ears lower? Was her nose different? She appeared to share some similarities with her brother but her eyes definitely indicated Down’s Syndrome.
Throughout the night I continued to attempt to feed her with little success, one of the midwives came in to see me and I asked again if there was anything wrong with her, I remember her asking what I thought was wrong but yet again I couldn’t bring myself to say it. I tried to get some sleep despite the other three babies on the ward crying and the other adults snoring.
When morning came my husband returned, and it didn’t seem long before the consultant came to see us, his question … ‘Has anyone told you they think your daughter may have some sort of syndrome?’ My instincts were confirmed and our rollercoaster and learning journey began.
The 36+ hours after the initial conversation with the consultant, and waiting for a confirmed diagnosis were the hardest part of our journey to that point.
One minute there was anger and so much upset that nothing had been picked up on any of the pre-natal scans; I'd had quite a few extra scans as had been weekly from 32 weeks due to Ava measuring small. I couldn't understand how her diagnosis could go unnoticed for so long, through so many scans, surely the reduced size should have indicated a possibility?! I just kept crying, actually sobbing my heart out, asking anyone and everyone who came into our hospital bay why and how it had gone unnoticed. I also kept asking over and over again whether it was my fault ... had I done anything during pregnancy ... I was reassured there was absolutely nothing I'd done/ not done.
At times I questioned whether I was being punished for all sorts of things ... wanting a third child, wanting a perfect little family and many more things. But then I looked at Ava and realised she was most definitely not a punishment, she was an absolute treasure who I could not love any more than I already do.
I also felt a huge amount of guilt ... had the diagnosis been given during prenatal screening what would we have done? I will freely admit my ignorance of raising a child with Down's Syndrome, as such, at the time we probably would have considered the possibility of termination. We had the screening as, with two other children, at the time it seemed important to make sure our third baby would not adversely affect the lives of our other two children as they continued to grow up. As I looked into Ava's beautiful big eyes and my heart melted with so much love I couldn't imagine not having her in our lives. It was also clear that she certainly would not have an adverse effect on anyone's life and over the coming days and weeks it became very apparent just how much she was going to enrich our family.
While waiting for the confirmed diagnosis we did a lot of googling and searching through various Down's Syndrome websites and reading countless blogs written by other parents (all better accounts than mine will probably be!!). It became clear to me that although there were going to be some difficulties for Ava along the way, there was going to be very little that would be impossible for her to achieve if she wanted to and had the right support and although she may need a little extra care with some things as she grows up, this really wasn't going to be detrimental to our family or to Ava's quality of life.
Each time I look into Ava's beautiful big eyes my heart melts with so much love; I realise how lucky we all are to have her in our lives and I could not imagine her not being part of our family.
Why I'm Grateful
I have recently found out that a friend of a friend has given birth a few weeks ago to a beautiful baby who happens to have Down’s Syndrome. On hearing the news it has made me reflect on the last 6 months and all of the things I am grateful for since Ava’s arrival.
I’m sure there are many more things that I will think of but my minor OCD will not let me have an odd number for now and certainly not 13 so when I get my thinking cap on there may be another list added.
Please do one thing after reading this, consider an event that has been difficult for you, has been an inconvenience or just something you weren’t expecting in the last 12 months and write down at least 10 things you are grateful for as a result of it happening, possibly even try and get to 13!