- 1.a hope or ambition of achieving something.
- the object of one's hope or ambition; a goal.
- 2.MedicineThe action or process of drawing breath.
- The taking of foreign matter into the lungs with the respiratory current.
Mojo's ongoing battles with daily vomiting and heavy congestion means that every time she is sick (did I mention this was every day) she is increasingly at risk of aspiration. By that I mean the 'foreign matter' type. Essentially, the (daily) vomiting brings with it coughing and gasping for breath and as she gasps and sniffs the vomit in her nose and throat is taken into her lungs making her cough more and gag more and once she has calmed and we've replaced the fluids, the 'foreign matter' now sitting in her lungs is busy causing further damage by creating more congestion to trigger more vomiting and thus continues the mind blowingly frustrating cycle. I will spare you the details of the multi-specialist process of trying to diagnose and treat the issue other than to say that things did not go, have not gone and don't yet look to be going our way and for each day it goes on the guilt that I have not yet been able to make it better for her increases.
Meanwhile once the sick is cleaned up and the clothes changed (can you get washing powder on prescription?) there is life to be getting on with.
This month has seen our EHC Plan meeting. An EHCP for those of you who don't know is an Education Health Care Plan and it replaces the Statementing system. By all accounts it is a far preferable process and results in more tailored outcomes for the children involved but it is by no means an exact science and is still very new. The aim of the meeting is to establish Imogen's abilities, needs, requirements, aspirations, goals and then discuss what resources she will require to achieve them and then a group of people in an office at Wandsworth Council decide if she is to be allowed those resources and how much money will go into facilitating her education. Then, from what I have read up on and been told anecdotally begins the battle with the council to ensure that we can agree on a suitable package of resources and hours. It's daunting and stressful and downright surreal to begin with. I sat in a room with eight professionals (therapists, nursery teachers, educational psychologist, rep from council etc) and we discussed Imogen and her aspirations.
Don't get me wrong I like the terminology I like that I am being asked to define her aspirations and consider what I want for her but it's such a huge question. What are Mojo's aspirations. If she could talk to us what would she say? What does she want to be able to do? What can we do to help her learn? How would ANY three year old answer those questions? I truly believe that her answers right now would be along the lines of I would like to be a firefighter or maybe a penguin. I would like to be able to fly and I would like to be allowed to chew on people's hair and pull off their glasses whenever I so choose.
I was a little more measured with my actual answers and spoke very honestly. I want her to be happy and I want her to have her enormous potential harnessed and nurtured and I want her to enjoy school and make friends and I don't ever want her physical limitations to be a barrier to her learning or her happiness. We then spent an hour and a half breaking down and examining exactly what we would need to make all of that happen. It was a positive and encouraging meeting and having arrived anxious and defensive I left feeling like everyone there (with my opinion of council rep pending, based on performance) genuinely had Mojo's best interests at heart.
The meeting made me look to the future, something I rarely allow myself to do, there is too much uncertainty and too many what if's to spend too long dwelling on what may be. The version of the future it allowed me to see is one where achieving aspirations is something which we will regularly do. It allowed me to see beyond the sick buckets and the surgery. It reminded me once again of how far we have come. My brain returns unbidden to the 'no quality of life' meeting which plays in my head all the way home.
So first things first and we will aspire to end the aspiration and then shoulders back, face forward and focus on the aspirations.