Life limiting disorder, Maisie's story


img_20180919_2048271At 3 months old, we’re only just really getting to know Maisie – her likes and dislikes, her character.

When we thought we were loosing her at only two weeks old, something we found really sad was that we didn’t feel like we knew who she was yet. We hadn’t had time to get to know her and who she could possibly become. So despite her uncertain future, and the grief that already comes from all those milestones and perfect moments we’re fearful of missing – we are also extremely grateful for this time we have had to get to know her, as the beautiful baby she is.

Even at such a young age, babies have a real way of showing their personalities – from the moment you feel those first kicks inside you, to those first stares with their big bright eyes.

Here is what we’ve learnt about Maisie so far:

She is a fighter! When she was first diagnosed with her original heart problem, the doctors couldn’t quite believe she looked so well with such a severe coarctation. Her poor heart and lungs had been working so hard to keep her going – but other than fast breathing, she hardly showed any signs of being unwell. She was still feeding, still awake at times. And she fought through it all. She is so resilient, she was awake just a few hours after her open heart surgery, off her ventilator the next day, and out of intensive care the next day. Just five days after her surgery, she was discharged, and allowed to go home.

She already has a real zest for life. Unlike her brother who was born 10 days late – she was inpatient to get out into the world, shocking us with her arrival 9 days early (just in time for the kitchen renovations to be completed!) and was almost being born in the car park! She always seems so eager and ready to go, kicking and pushing with her legs, trying to reach out for whatever is in front of her.

Being born deaf (we think it was congenital) – she makes up for it with her other senses. She loves water, already splashing about in the bath. And loves lights, mobiles and movement. Because we want to give her the best time we possibly can, we have put mobiles up all around the house, give her a bath once a day and have disco lights on in the living room pretty much 24/7! She also loves to study people’s faces – staring at them intently as they sing or talk to her.

She is quite coy with her smiles (saving the biggest and best for her mummy!) We think she may be quite a serious soul, but if you give her a great big grin, she will usually give one in return – but they are pretty precious.

As much as a baby can be, she already seems quite independent. Whilst her brother as a baby would never be put down and spent most of his life in a sling, or in my arms, Maisie seems to be stifled when she is held – always preferring the freedom of lying down on her back to watch the world around her, content being by herself. Generally she seems very calm and serene, just taking it all in, studying the goings on and amazed by her own hands!

In some ways, it breaks my heart when I look at her. She is so trusting and innocent. Unaware of what is going on inside her. Fully living in the moment, she has no idea of the future, the possible scary medical procedures in front of her and the things she may miss out on. She is already teaching us things about life: that we too should live in the moment, that we all should make the most of the here and now and all that we have. No-one ever knows what the future holds, don’t waste time worrying, being scared and unhappy – spend time with the people, family and friends that matter most to you, and make beautiful memories to treasure forever. We are trying our best, Maisie, my sausage!

Leave a Reply