Half a year and half a world away

This week marks six months since Etta was born. Time has been so warped by coronavirus that it feels like a lifetime ago. If she was still alive, it is a milestone that I definitely would have celebrated so feels only right that I still mark it even though she’s not here.

So, what do I imagine she would be up to at 6 months old? It’s such a tricky one- it feels like I can imagine Etta at 6 months old without any heart defects or Etta who recovered quickly from surgery. She would have started sitting up on her own, throwing broccoli purée around the kitchen and moved from her bedside crib to her cot.

But had our beautiful Etta lived after that last surgery- 6 months would probably look very different. She may well be recovering from her next major heart surgery (the Glenn procedure). She might have still been tube fed or weaned early to help get extra calories into her. She would probably have reached her milestones slower because of her heart needing to work so hard and her extended hospital stays. She might not have been sitting up yet. And she certainly wouldn’t have been leaving the side of our bed for a long time! I sometimes wonder if Sam and I would ever have felt comfortable to move her into her own room. We might have still been sharing a room until she was an adult 🤣!

So in all of my daydreams there are always the two parallel Ettas running side by side. The first Etta who healed and was home in 3 weeks (the best case scenario) and the Etta who was really sick but managed to pull through. I think their lives would have been quite different.

I love to imagine a toddler with blonde ringlets bossing around her big brother and having such loud tantrums I worry about her turning blue. But it all gets much fuzzier the further into the future I try and imagine. Maybe because Ezzie hasn’t got there yet so I have nothing to compare her to or maybe it’s just because the older I try and imagine her, the further away that is from anything I knew of her.

27 days will never be enough and it breaks my heart that I’ll never really know. There’s both a comfort and heartache in this speculation. I read an interesting blog post yesterday about quality of life for people with disabilities which was basically arguing about who had the right to determine what a good ‘quality of life’ is. The mother who had written the blog’s son had died after they suffered brain damage from a urea cycle disorder as a a baby. She found that once people found out he had suffered from brain damage, his death was often seen as a kindness because it was assumed he would have had a poor quality of life.

It’s a really hard topic and unfortunately parents are often having to judge what their child’s quality of life would be, often when their child is still in utero. On the afternoon Etta died, Etta’s surgeon came and said “I know it’s not a comfort now, but lots of these children go on to have really hard lives”. I wasn’t angry at him for saying that because I’m sure it is the truth. But it was also the truth that we would have rather had Etta in our lives whatever that would have looked like. The Little Hearts Matter (charity for single ventricle heart conditions like Etta) motto is ‘Half a heart, not half a life’. We would have worked so hard to make her life so full and whole. But I suppose there came a time in Etta’s life when I was close to saying ‘Enough now’. I’m glad that in the end the doctors made the decision and not us. Choosing to let your child die out of love for them is a bravery beyond comprehension. We only experienced a glimpse of that in stopping Etta’s life support.

As I think about Etta at 6 months old, there are so many possibilities for what her life could have looked like. I know there are circumstances in which she would have lived and flourished with a ‘fixed’ heart. There are circumstances in which she would have lived with complex medical needs (and hopefully still flourished). And of course there are more circumstances in which she would have died. I feel like as her mother, I should be the one to know my daughter inside out. But there are just too many unknowns. The only thing that is a certainty is that whatever the scenario she would have been so completely surrounded by love.

We love you and miss you more every day Etta Grace Libi. 💕🌻