During those early days of shock I welcomed the numbness that settled in like a heavy fog, it protected me for a while from reality. I remember feeling disembodied, detached, and unable to connect with my feelings. Thank goodness for the loving caring friends around us then who would listen, ask, and hold the space for us to try to comprehend what was happening to us.
Gradually, I became able to take some action, I began to look at research on Trisomy 18 and found many stories where diagnosis proved to be wrong and babies were born perfectly healthy.
Denial began to set in – the more stories I read the more convinced I became that Lily could be one of those babies.
I also discovered cases of babies born alive with Trisomy 18 and living happily for many years. I eagerly gathered this evidence as proof that our little one could survive, could be healthy, that my hearts longing could be fulfilled.
Patrick and Tom would do their best to make me smile and looked after me through my darkest moments.
I contacted the Trisomy 18 Foundation and they put me in contact with a lovely woman who's baby was born with Edwards Syndrome, she would talk to me
whenever I needed some reassurance or support with my questions – there is nothing as powerfully reassuring as talking to someone who has walked the same path before you. She shared her story with me, she understood my fears, her kindness and honesty was a soothing balm allowing me to gently let in the reality of what may be.
I spoke many times with Clint, often when I was feeling terrified of loosing Lily and overwhelmed with grief. He would gently help to bring me back to a place of peace. Patiently he would remind me again and again of the spiritual perspective and guide me to more clearly see how I could embrace our situation and move towards a state of grace rather than despair.
At night as I went to bed he would call and talk me through the most beautiful healing meditations, which would send me into the deepest peaceful sleep.
He spoke to me of soul contracts, agreements made between Patrick, Lily and I before our birth, to fulfil this task that was for each of our souls progression. How we each agreed to undertake this divine journey together knowing how challenging it would be.
This was a concept that made sense to me, it resonated deep within my being, as if it triggered a distant memory that was lost at birth. It reminded me that there was indeed a higher purpose to what we were experiencing, and that that purpose was of sacred descent.
Now I don't want you to think this was a perspective I managed to hold on to at all times! Much of the time I was in turmoil – my humanness overshadowing my faith.
Filled with useless questions like why me? Why Lily? Why after all our treatment to conceive her? Why be given the gift of pregnancy for then our child to be taken from us? What had I done wrong? What had I done to deserve this?
I tortured myself with thoughts of this being some kind of punishment for perceived past wrongdoings. Or blaming myself for waiting until I was in a stable healthy relationship to have a baby. Or that somewhere deep inside I must harbour the belief that I didn't deserve to be a Mother, and that therefor I was creating this nightmare, if only I could do the work, if I could learn whatever lessons I was supposed to learn from this, if I could let go of any subconscious limiting beliefs, then maybe just maybe Lily would be ok.
Now I began to drift into a subtle phase of bargaining. Bargaining with God, with the Universe, with what ever Higher Power I hoped might be able to grant us our miracle. If I could do the work, if I could do it well enough, if I prayed, if I learned the lessons, if I did everything within my power to be in spiritual alignment, then we might be given some divine gift of healing and our baby be born safely into my arms.
Clint's patience with me as I questioned everything was limitless. As I oscillated between acceptance and non acceptance, control and surrender, faith and resistance, desperate to make some sense of it all, and wanting to know all the answers. He would always manage to break through my illusion and realign me with a state of grace and peace.
This phase was filled with so much turmoil, anger, fear, resentment, judgement, resistance, despair and blame, versus surrender, acceptance, hope, faith, peace and love. But as I gathered the necessary tools around me that I would need to guide me through the coming weeks and months, I eventually came to some kind of balance.
Whenever I wobbled I would call upon one of my guiding lights and they would gently ease me back into a place of peace.
I knew I wanted to honour Lily's life no matter how brief our time together would be, by doing the very best I could for her so staying calm and positive
became my mission.
We were given some timeline markers at this point, if Lily could reach 1kg and get to 28weeks they would consider delivering her by C-section.
At 24 weeks Lily was only 388gms but she had gained 138gms in the last 3 weeks.
Blood flow was decent but my placenta could fail at any time due to overexertion.
Life was filled with trips to Newcastle for in-depth check ups, and hoping to find Lily had gained more weight, edging ever closer to the 28 week mark when we'd been told she wouldn't survive. If she could just get big enough, if she could just reach that goal, then maybe she could be born by C-section and given the care she needed to live.
Once we passed the 28 week mark I developed a new anxiety about what if Lily died and I didn't know? I was reassured by the medical team looking after us that I could go to the nearest hospital at any time, or doctors surgery and wait to have Lily's heartbeat checked. This I did very regularly, at first I felt ashamed to be taking up their precious time, or worrying about my baby so much, but for my sanity and peace of mind I decided I would rather risk feeling uncomfortable in asking, than continue with the anxiety that would grip me. I allowed my self to go get checked out whenever I felt concerned.
Every week became a milestone, she was growing, she was getting stronger, she was making it, my hopes would raise and my ability to accept the possibility of the worst would diminish. Yet every day was also a step towards her birth or death, living with this dual possibility is indescribable.
Hoping for her to live and grow each week but knowing that any day her heart could just stop
The knife edge of emotions became my place of residence.
We were also faced with dilemmas like do we decorate Lily's room? Do we buy more furniture and things as if she's going to be ok? Or do we believe what the doctors are telling us and accept that there isn't going to be a baby to bring home? I wrestled with this torment, it felt completely wrong to be watching our baby grow but not preparing our home to receive her. I felt as if I was betraying her by not doing so, my non actions portraying my gut wrenching acceptance that she indeed wouldn't live to come home.
My humanness conflicting with my spiritual alignment, more turmoil, if I believed she could live then I should be creating her space in our home and by not doing so I was projecting that she would die. Everything seemed twisted and weighed so heavily, I felt like a terrible Mother. Finding my peace was like trying to catch a bubble, the more I tried the further away it would move. Until I leared again to surrender, hold out my hand and let the bubble land.
October 15th International Pregnancy & Infant Loss Awareness Day + Global Wave of Light
We are very grateful to Scott and Claire for their generous hospitality in hosting us for our annual Remembra
nce Celebration. We invite you to join us for a very special evening remembering and celebrating all our babies and children gone to soon.
On this special date, we will light candles and be part of the global wave of light around the world. It will be an evening of remembering and honouring our babies, sharing and connecting with those who have travelled this path and those who help us to travel it.
If you would like to come along, please join our event on Facebook - to help us prepare for accommodating you.
Doors open 6pm please come early to allow time for candle lighting and putting an angel on our remembrance tree in memory of your baby or child.
There will be tea and coffee afterwards and time to talk and connect with each other.
We hope to see you there, message or email Val with any questions you may have, I will do my best to answer -
We understand that some of you may wish to join us for the Remembrance Celebration but be unable to attend - with this in mind we would like to offer you a way to include your precious babies too. If you send us their name in an email we will honour them by lighting a candle for them and speaking their name with all our babies during the ceremony.
United we honour our precious ones, together we help each other to heal.
Love and blessings, Val x x x