The Real Truth

The Truth

I’ve spoken about Sara and our journey a lot. I’ve spoken about how we gained strength from it and how we came together as a couple, came up with a plan, not wanting to bury our heads in the sand, so we looked on the bright side and dealt with our lot. While all of this is the true, there’s more to the story and more truth to those truths that I haven’t shared and I feel at the start of the year that it’s time to speak the real truth.?

The Real Truth

When Sara was first born and I held her in my arms I felt numb. I never before understood that term of ‘feeling numb’ but those that have felt it will know exactly what I mean. I went to sleep with my beautiful newborn and woke up hoping her birth was all a horrendous nightmare and I was still pregnant with the ‘perfect’ ten little fingers and ten little toes baby. Yes ten fingers she has but I woke up that morning and plastered a weak smile on my numb face for my husband, my baby and most of all for myself. I called my family and told them how ‘ok’ we all were and how it would be ‘fine’ and many of them repeated it back to me “It’s ok. It will be ok”.

#OKnotOK

But it wasn’t ok. I wasn’t ok, Sara wasn’t ok. Most of the time, in the following months we were actually ok, getting through and busy with life, which now was mostly appointments, getting to know our baby and meeting everyone to tell them how ok we were.

I haven’t spoken about the time myself and my husband watched the movie ‘Wonder’ about a young boy with Treacher Collins Syndrome, who needed many surgeries with a similarity to what our Sara needed and will perhaps need in the future perhaps. We were looking forward to the movie, to get an insight into it. We sat down and watched the opening scene, which played out our own experience in front of our eyes with Sara being taken away at birth with questions being asked and is not knowing what was happening. By the end of the first scene, we were both in floods of tears and the movie was turned off.

I haven’t spoken about the sense of grief I felt and still get pangs of for my daughter for the ‘normal’ life she could have had. I haven’t spoken about how I envied other mothers with babies that had normal heads and didn’t have surgeries planned or how I sometimes looked at other babies with regular heads and thought how huge their heads looked, because I was so used to looking at my normal, which was Sara’s beautiful smaller head.

I haven’t spoken about how sometimes (especially at the most inconvenient times) when I have to talk about myself, Sara’s story finds its way out of my mouth without me meaning it to.

I haven’t spoken about all of the nights we cried together about our daughter thinking about all she may or may not or definitely does have in store.

I haven’t spoken about the compensation we give her emotionally or the subtle differences in treatment (unintentionally) from us or others compared with her siblings or other children, about our joy when she hits regular milestones or the level of disappointment when we hit even a minor speed bump. I haven’t spoken about the frustration I felt recently when we found out she needed hearing aids even though we knew it was always on the cards.

Privilege and Bubbles

I haven’t spoken about how looking as her mother at the world how ignorant I have been all this time and living in a bubble of privilege. I had thought of myself as non-judgemental but that in itself was and still is part of my ignorance.?

Anger

Things anger me now that I never even considered on the past such as the use of scars in the media to portray evil or people (even myself) being well intentioned and making light of the situation to try to say the right thing, or indeed the exact opposite where people take it too seriously. It’s an ever changing Goldilocks level that can’t be predicted and I realise it’s a lot to ask.

Choose Kind

The point is that yes we are trying our best, yes we actually are ok, yes Sara is doing well, yes we live normal lives but it has been difficult and the real truth is that nobody knows what’s going on with other people so to quote from the movie we couldn’t watch that day “When given the choice between being right and being kind, choose kind”.