Reality

Runa is getting put forward for a seating assessment, which will provide her with a very large, structured floor seat. She is coming up to her first birthday and her sitting isn’t where the physiotherapist would have hoped it would be, so more support is appropriate.

Me and the physio had a rather frank discussion about what we can expect over the next year for Runa.

A standing frame to support her hip development and avoid potential dislocation and encourage weight bearing.

An adapted, structured buggy to support her to sit properly whist protecting against scoliosis.

Towards the end of the year, a walker to encourage… well, walking.

Over the next few years if Runa is not going to be a walking child we will start looking into wheelchairs etc.

This brought some difficult thoughts and feelings to the forefront of my mind. I knew this was all coming, I knew this was what we could expect, but it has been quite painful… Pulling the thoughts floating about in the back of my mind and forcing them out of my mouth during a conversation… The reality of Runa’s future is rarely easy to take.

Runa can sit briefly and play with toys in front of her, but her back is very rounded and she does not have the core strength or coordination to stop herself falling over.
Runa can weight bear for all of a few seconds before she gives up.

In my personal opinion, over the past year Runa has met the developmental equivalent of a 4 month old. I feel we will be very lucky if she meets the developmental stage of an 8 month old by her second birthday.

It isn’t a nice thought really, but since diagnosis there has been too much uncertainty and now I feel like we have at least a little more clarity over what to expect.

We can expect continued, slow development and we can expect a lot of physio and occupational therapy equipment. We can also likely expect that Runa will not learn how to walk.

None of this means that I will be giving up. Runa is fantastic, unique and a genuine joy to spend time with. I will continue to work her hard with her physio and give her every opportunity available to develop her skills. She has surprised everyone so far, there could be many more surprises up her sleeve.

The reality facing our future brings a lump to my throat, and in the interest of being kind to myself, I am allowing time for some wallowing in self pity.

But the reality of the present is so much more important. Both of my beautiful daughters need me to face the world head on with them and believe they are capable of incredible things.

Normal Mum and Kid Stuff

It has been a fairly typical day in my life. I had an appointment in the morning, then went to pick up Nina from nursery. We ran a couple of errands; off to the shop to buy a couple of essentials (milk and a colouring book). We then came home, had lunch, had coffee, watched cartoons… Normal mum and kid stuff.

I have wanted to do house work throughout the day, but every time I have put Runa down she has screamed her head off. She is of course happy when I’m playing with her, cuddling her and reading to her. But when I put her down she yells so much it makes her throat sound like it’s about to pop.

But the house work still needs done, I said to myself, putting Runa into her jumpy chair so that I could wash the dishes. She screamed and screamed… And screamed some more. Then, just for good measure she started throwing herself back and forth until I was done.

Of course, another cuddle made everything better. Ten minutes of shaking various toys and singing some songs pacified my little cherub. So I put her on the sofa with some toys and encouraged her big sister to keep her company while I attempted to sort out some of the clutter in the living room. It may not surprise you to learn that she started screaming and crying at me again.

Mothers have evolved to not deal well with their children crying. Instinctively all you want to do is pick the baby up and comfort her, and who am I to argue with millions of years of evolution?

I sat down, put Runa on my lap and cuddled her until she stopped crying and fell asleep. Then I started to cry. How am I supposed to do anything, ever, if she can’t be put down?

So in the interest of instilling some sanity into my frantic mind, I’m sitting her turning it all on its head.

My child, who has developmental delays and brain malformations, understands her own desire to be comforted. She responds appropriately to interaction and will let everyone know how she’s feeling.

My child, who may never crawl, walk or sit without the risk of falling has enough strength in her legs and core to express frustration physically. (testament to her desire to get moving, she desperately tries to sit herself up when she’s reclined. This often leads to face-planting. Which her parents, of course, never giggle at…).

My child is here and I am so lucky to have her in my arms, cuddled up on my chest.

Runa is crying when she wants held… This is not a disabled baby thing. This is not an aicardi girl thing. This is a normal baby thing.

The house work can wait. I’ve wiped my tears and I’m enjoying my Cuddles with the most amazing baby I know. This is normal mum and kid stuff. It may drive me crazy but I love it all the same.

Update: Stewart came home and I managed to hoover the living room!