So what do you do?

Ugh. When you meet new people. Or old people, who know you've stopped work. I hate this question. It makes me feel inadequate- RIDICULOUS I know. But I struggle to say 'I don't work' since I finished teaching. I feel like this says something about my identity as a person, even though I'm certain it doesn't to those asking the question. However, fresh on the back of my 'unemployment paranoia' the other day someone asked me why I didn't work, despite knowing my situation with Elin, and then actually argued with my response as if it had anything to do with them and as if it was their sole mission in life to persuade me to go back to work.
Definitely fodder for a blog post, I thought.
So..........

A perfectly average week in the life of us (this is completely mundane information but multiply this by 52 weeks of the year and you get my drift)

Monday
Meeting 9:30am school w/Nurse.
Meeting 2:00pm w/Elin's Case Manager.
Scheduled phone call 4:00pm catch up and discussion of needs with Occupational Therapy.
Appointment at home 4:30pm Physiotherapy.
Tuesday
*No appointments!*
Drop off prescription at Chemist.
Phone Orthotist to check on boots progress.
Send email to Elin's case manager with links to upcoming equipment needs.
Chase appointment request with school inclusion officer via school.
Wednesday
Email Ed Psyche to confirm meeting at school next week.
Appointment 3:45pm w/new social worker.
Chase G.P as to why Medazolam medication still hasn't arrived.
Email O.T to confirm physio can meet here with her. Remember to phone school to check O.T can go in before this to see Elin at school.
Thursday
Phone incontinence service to check when next delivery of nappies due (as we will run out if I miss the fortnight-before order date).
Pick up and check medications from Chemist.
Post Elin's updated school records to case manager.
Appointment 3:30pm Orthotist intermediate boot fitting.
Friday
Take delivery of Elin's feeds and giving sets for the month.
Drop off another prescription.
Chase G.P referral for specialist Dystonia appointment still waiting to hear about.
Appointment 3:00pm - Pick up Elin from school and take to Hippotherapy.

Night Diary.
Elin wakes up usually around 2am for a change of nappy and sometimes a  change of sheets too.
Back to bed and pray Elin drops off quickly again.
Possible second wake up around 4:30am, may or may not go back to sleep.

Other appointments on other weeks in addition to those above include:
Cranial Osteopathy.
Dietician review.
Paediatric Neurologist @ Maelor.
Hips/Spine reviews @ Alder Hey.
Orthopedic Spinal etc review @Maelor.
Dermatology.
ALAC wheelchair services.
ALAC Orthotics/Splint castings and review.
Specialist Dentist.
Movement centre @ Gobowen/Standing frame fittings.
Hand Splints reviews.
Home hoist and sling checks and reviews.
Occupational Therapy home equipment review.
WAV Vehicle repairs (chair restraints etc)
Bath repairs and review.

Please understand that none of the above is in ANY WAY a complaint. I am delighted that Elin has access to all of the above and forever grateful to all of the professionals in her life for their care and dedication to ensuring her quality of life remains the very best it can be. But I just wanted to share the reasons why I choose to *currently* not add 'work' into this mix, since if I am asked about it I annoyingly find myself struggling to justify my choices articulately. I think I feel guilty. I don't know why. Guilt for not contributing to society in some way? Guilt that I'm fortunate enough to have the option? I don't know.  Then I hate myself afterwards for caring so much what anyone else thinks in the first place. It's taken me a while to realise I don't actually automatically owe people an explanation of why I chose to give up a job that I used to love. This post is definitely not meant as a justification either, but I finally felt ready to honestly and openly share some of the reasons why, as a parent of a child with severe and complex disabilities, going to work doesn't really fit into my schedule at the moment and doesn't for many others. I did it for eight long years following Elin's birth and in the end I couldn't make it work (I made myself ill trying, both physically and mentally). Some people do make it work of course and they are AMAZING. For me right now, the kind of teacher I could be alongside the job of being Elin's Mum is not the kind of teacher I would want to be.  Teaching simply needs more dedication and enthusiasm than I am able to give, especially in the current educational climate (and I could write a whole other blog post on that subject believe me). I loved my job more than anything once upon a time and leaving a school I called home and a staff that were family was beyond difficult even though I knew it was 100% right at the time. It's taken me 18 months to be able to admit "I USED to be a teacher" instead of "I am a teacher" because of some weird misguided sense of shame I carry around about being unemployed. I was 26 years old when I had Elin, I was always going to go back to work full time after having her, I never questioned it. I had a career. I looked sneeringly down from my ivory tower of pregnancy on Mum's who didn't work- I couldn't imagine it (I hate that fact now-maybe that's partly where the guilt comes from). Things change. "Life is what happens whilst we are making other plans" as John Lennon so accurately observed. It will always hurt, always be yet another "Sliding Doors" moment in my lifetime, but I am soooo thankful I have had the ability to make this choice, which works best for us right now.
Perhaps one day things will change again. Learning to live in the moment (as a bona fide control freak and someone who likes to plan)  is something I've been trying to train myself to do for the last ten years. I think I'm slowly starting to manage it.
I used to be a teacher. Now I'm just Elin's Mum.
And I love it.
Thanks, as always, for reading.

Happy Mother's Day to all the Mummy's out there if you work full time, part time or stay at home. You're all heroes. 

xxxxx