A couple of things helped wake me up a little this week.
First it was the passing of a little boy who lives near us. He’d been ill in February: hallucinating and vomiting. The doctor sent him home with a cream. His Mum (appalled) took him straight to A&E where after her pushing they scanned him and found a tumour. The story went to the local press. My involvement was to inform a friend who runs a charity which benefits kids with brain tumours and post op problems. She supported the family over these months, making their journey a little easier. He slipped away on the 20th aged 10.
Hearing this today made me look at my own brood and again feel so thankful that their health is generally good and stories like this are rare.
The second event was becoming involved with a movement that is actively pressing to instal decent sized and equipped changing rooms for people with disabled kids in as many places in towns as possible. The normal baby tables that you may have used with your babies only work for us up to a certain age and after that it’s all about changing our kids on towels on the floor. Changing tables, hoists, plenty of room and paper towels all paid for by the big companies. Changing Places btw.
In between contacting a few big companies, I once again noticed the pictures submitted to the movement’s websites. They show children far more affected by their conditions than my son is.
Disability is a sliding scale. Although Ashley will need support for the rest of his life he can communicate, he can move around. His body functions normally, in fact he’s stronger than most kids his age.
So, things could be harder. But reading the posts of the parents involved I can also see a common thread amongst us of living with and loving the children we have. Their challenges impact on us but “thems the cards we’ve been dealt”. It puts into perspective the day to day problems we have when we see the extremes of support that some parents provide for their little ones.
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Ashley is ten on Monday. We’re going low key this year with a buffet, a Minion cake, a watch and a box of Stickle Bricks. We bank some money for him too for rainy days. His psoriasis is again clearing up, hopefully for some time to come.
Heather starts college on Thursday. Easing herself into adult life seems to be coming naturally as she delights in getting college post, has agreed to house sit for a few days and has even gone on the Electoral Register for two years time.
I’m off work for a few weeks now so hope to fix up the back yard. We cleared it last week so now we can start to make it more habitable.
“May the road rise with you and may the wind be ever at your back.
May the sun shine warm upon your face and the rain fall soft upon your field.”
Image may be NSFW.
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Image may be NSFW.Clik here to view.
