Ever get the feeling that everyone around you is surging ahead and you’re left in their wake? 

Disability is a tricky thing; the world is not as accommodating as people think and that realisation hits hard when you’re the one on the outside looking in.

When my children were old enough for school I was excited for them to enjoy their school years as I enjoyed mine but my experience as a disabled parent was depressing to say the least.  Everything that was available for parents was severely inaccessible and the fight to get access was just exhausting.  The school became a battleground.  I could see the difference in the experiences of my able-bodied counterparts and it made me very, very sad.

Time came when we removed our children from school (that’s a whole other story) and immediately our anxiety levels reduced and gave us much needed relief. The disappointment I felt was surprising given the difficult experiences we had with the Headteacher but I felt that I had let my children down.

I had deprived them of something fun.  My disability had taken something away from us- again. I am not supposed to restrict my children- I’m supposed to give them opportunities to learn and grow and help them to blossom and shine.

Time and again I have created loss for my family while friends and relatives have surged ahead; calls/emails and invitations have become less and less frequent and suddenly the people I counted on, the ones I thought of as my support circle, were gone.

I get it, it’s sad and depressing and boring and monotonous to be around someone with no good news who needs so much help –  like an albatross around your neck.

I’m flotsam.

5 thoughts on “Flotsam”

  1. Never feel guilty – it’s not like you chose this. I have a MiL with lupus, and I have several auto-immune diseases as well. Life sucks sometimes. If you’re anything like me then stress and anxiety cause massive flare-ups – do what’s best for you and your family and ignore the rest. Your kids will grow and learn and shine outside of the traditional school system too, and in fact, they may just end up far more well-rounded than their peers. Plus, you are teaching them compassion and empathy in a great life lesson. Hang in there!

    Liked by 1 person

  2. Very sad to read this. I know you already know that M and L are amazing …they really are. The last time I saw them at the London Bridge medical workshop, they exuded such maturity. Don’t think for a moment that kids that get out there *daily* are lucky… I can confess now that T and L will rather stay home all day everyday, but I know..at least we have a choice. Sending love to all of you x


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