Back at School – but tell me how you really feel!

Summer went by like a fly.  Summer went by so fast it was hard to tell which day was which and how many days were left.  But when the real summer stopped and the nightmare of school began it was harder than ever.  – by Chelsea (read more here )

Some kids can’t wait to go back to school – counting down the days from the first day of summer, and others like Chelsea have always dreaded going back. She used to worry about getting a good teacher, who she would sit next to, getting average grades and not keeping up in gym class. Now in every class she sits next to her special needs teacher (who we have known for years even though this is her first year in the role) Her grades are better than her brothers were as she points out to me every day, and gym hasn’t been on the radar since 3rd grade, so why the dread?

No Chair – No Pain!. No Chair – No Paintability!

It’s all about the chair. 6 years into life in the chair the novelty and excitement has definitely worn off for all of us. Her back hurts – all the time (never, ever think the scoliosis checks at school are a waste of time because you don’t want your kid to go through this)  and she only really feels comfortable in her bed. But Monday to Friday at 5.30am, I wake her up with a smile and then go through the 90 minute daily drama to get her  into her chair and ready for another day of learning and growing.

Coaxing her , distracting her (with music), encouraging her , tempting her with treats (to eat, breakfast her least favorite meal of the day) and doing all the things that I really don’t want to be doing to my 15 year old. (if I shared she’d not speak to me for God knows how long – silence and rolling her eyes away from me is the punishment of choice for a quad who can’t do anything else).

Have a great day honey – part instruction, part entreaty but mostly it’s a prayer.   A prayer that she will come home happy, with something to share about the day, and that she will not be in too much pain. Oh and preferably that she will be speaking to me.

Usually around 5.30pm she gets put back in her bed. She stretches (reflex) and has lots of spasms and then we get her comfortable. Homework, reading, a TV show or 2 and then bed by 9.30. (for both of us)

Every day as she is leaving I remember a Zig Ziglar story I used to trot out about the need to do the right things not the easy things. It involved the parents of a boy who needed painful leg braces to correct a problem and how hard it was for them to do something that hurt their child every day. But they knew they were doing the right thing and in the end the boy became a man who was able to walk down the aisle blah blah.

I think of it every day, and say to myself I hope I am doing the right thing.

and then I remember all the amazing things that she has done and everything she has achieved in the chair and I am reassured that the good days make it all worth while.

Fingers crossed for more good days in the 170 school days left until summer 2014.


About Sandra F

Juggling work, family and personal life without much success...
This entry was posted in Children, Disability, Family, Parents, School and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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