The following I wrote 3 years ago:
Yesterday I struggled not to lose hope.
As most of you know by now I’m pregnant with twin girls. Today it’s 26 weeks. I’m writing this note to you today as I cannot fathom talking about this more than is already happening in my head, and sooner or later one of you will ask me ‘How are the twins?’
In our 19 weeks scan we were told that one of our twins showed abnormalities in her kidneys. After our scan the girls got fed up of being called ‘twin 1’ and ‘twin 2’ and we chose Angel cards to give them ‘names in utero’. Since then we have been referring to them as Passion and Hope – very synchronistic as twin 2 chose Hope and she’s the one dealing with her malformed kidneys.
Basically the doctors and specialists couldn’t say for sure but mentioned that Hope showed cysts in both of her kidneys. They gave us worst case scenarios which I basically just didn’t take on, knowing that this is just one moment in time and things can change. Well, in the last 7 weeks they have not changed much and after our scan and specialist’s appointment yesterday they told us that it is very likely that Hope will be born with little or no kidney function. This might mean that she might live for hours/days/months and that the most likely neonatal management will be palliative care.
This time it hit me hard. This time I understood that there is no operation or care that could help a newborn with this condition. I also got to realise that as long as Hope is in utero the placenta is taking over the kidney function and she is still with me – for now.
I’m writing this note to you as I want you to know that my intent is to be with whatever this process has to offer me. I’m open to feel joy as both girls are moving inside me, and also the pain, hopelessness, sadness, grief, anger at the unfairness – basically whatever is coming, I’m open to it. Some days I might be sad, some days I might not, any day as it comes and goes.
I’m not looking for your advice or suggestions. Even though they are well meant, sentences like ‘At least you’ve got another healthy baby’ are also not mending the feelings I have for Hope. Don’t be afraid to talk to me about the situation, if you can handle and accept where I am at any point. Please accept my state, you don’t need to fix or solve anything for me. Some days I might want to talk about it, some days I might prefer not.
I have no expectation from you with this note besides that I want you to know where I am at. Pregnancy and birth is in many cases a joyous experience. At times it is for me and at times it is mixed with a lot of sadness and sorrow – at least for me…
I’m reminded of one of my dearest poems:
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.
We might lose Hope and still be reminded to never be able to lose hope.
Nathalie & Chris, Hope & Passion