School Belle


Husband is doing bath/bed for Mojo’s baby sister and his distress is sincere and alarming. A familiar adrenaline rush drives me rapidly up the stairs to find him kneeling over baby running his finger over a huge purple and black bruise on her abdomen. It looked awful; internal bleeding? I looked at her incongruous smiling face and just as we started to make a plan to get her to A&E it occurred to me. Blueberries. She had eaten blueberries after her dinner. Sure enough the inside of her vest revealed a small supply of very squished blueberries. The internal bruising washed off. Order is restored. For the record blueberries make a very convincing bruise stain!

The thing that struck me was that I wasn’t surprised, even though this was my medically conventional baby. Simply because it’s autumn and autumn brings with it a really tangible sense of foreboding. The season change brings fresh waves of germs and autumn inevitably leads to winter. I know I say this a lot but we hate winter. The seasonal transition has already begun in our house. The vaporisers are out and the medicine cabinet (and medicine cupboard and medicine boxes scatted all over the house) is fully stocked. Secretions are our biggest nemesis. Imogen’s upper respiratory system works against her all viciously, over-producing secretions and then not managing them which gives her a semi-permanent rattle on her chest, a constant runny nose and making sleep exceptionally difficult. Its amazing how over the summer you do forget how bad it is until it turns up again and you have spent three nights “sleeping” on the floor by her bed to turn her over when she screams and stop her from drowning in her own sick (caused by, guess what, secretions).

The other reason I’m so aware of the change this year is that things generally have been so completely wonderful for the past couple of months. We’ve had so much fun family time, so many developmental progressions and then of course there has been school.

School. For the past few weeks you have not been able to open social media without being met with a steady stream of tiny children in oversized school uniforms and exceptionally shiney shoes standing proudly in front of doors usually with the kind of smile that comes after twenty minutes of coaxing. Lets be honest we should all make the most of it because there is probably no other day of their entire school careers when there will be enough enthusiasm and preparedness to allow for a 20 minute pre-school photo shoot but I digress. I’ve always loved seeing these pictures I love the oversized school bags and the beaming faces.

In terms of milestones this is a big ‘un and one which has been on my mind since the idea of Imogen being able to go to school was first mentioned to us. I can still remember what it felt like for the dream of school to fill me with sorrow because it wasn’t Imogen’s path (Bring it on!). So seeing her in a frankly enormous uniform with her very own school bag smiling proudly like the thousands of other children across the country was to put it mildly, a bit overwhelming. On her first day I dropped her off and in the car on the way home I felt lost. I spent the whole journey home thinking about all the things I hadn’t mentioned to them. What if they can’t understand her? Being non-verbal with a very individual often inconsistent interpretation of makaton signing means she is very easy to misunderstand and it is so very easy to underestimate her.

At the end of her first week she appeared from her classroom beaming and with some careful prompting from her teacher was able to tell me what she had done, she was even able to tell me the story in the book she had read at lunch time. She was so happy and proud and grown up and happy. So happy. So very happy. I waited until we got to the car to cry.

Respite is never a word I’ve been comfortable with, I wasn’t sure it really existed, actual respite. There are very few people who we can leave Imogen with because of her needs and (without for a moment wishing to seem ungrateful) even those people generally require explicit instructions. Leaving her with someone for a few hours requires a significant amount of planning. I have always been responsible for what Imogen does with her day, I’ve supervised her diary, I’ve juggled her appointments, scheduled her feeds, managed her medication, I’ve translated her signing, I’ve managed her every need. Not single handedly of course, Daddy is amazing but ultimately, day to day, because I’m at home, I’ve been in charge. Now that we are in a school environment things have shifted. From 9am – 3.30pm I’m not in charge, in fact I don’t even know what she’s doing? At lunch time I have flashes of ‘God I hope they don’t forget to give her her medication’ which is ridiculous but I’m just not used to relinquishing control. I get notes at the end of each day telling me which therapies she has had during the day. I no longer spend my week to-ing and fro-ing from St Georges. It’s surreal. It turns out respite is quite different, respite is completely letting go just for a while. For a few hours, letting go and trusting that someone that I don’t know IS able to care for Imogen and moreover is able help her to flourish.

For me underneath all the daily joys that school has brought with it, is the long standing relationship we have with the statistics, the initial expectations and prognosis. Here she is our school girl, looking up at her potential filled future. We are, as ever, in awe by her side.


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