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Wednesday, June 14, 2006

Hope and faith restored

We have hope and feel a lot better about things and like it'll get better and we're not mad! Nothing has changed in Caelan but last night we met a wonderful woman who has daughter with reflux and understands and acknowledges how hard it is. It means so much after feeling like most people think we're overreacting first-time parents. She contacted me through a forum that I'm a member of and has always given lots of great advice, encouragement and suggestions and shed light on so much as her girl is now 9 months old. We met her and her little girl last night, talking with her was so good! Her husband came home and they both talked about how they went through exactly what we're going through with Caelan and how they felt like they were gonna go mad with the constant crying and people implying that nothing was wrong. Things improved so much for their wee girl on the losec granules and although it's not magic, it's a heck of a lot better than it was. On the Reflux Support website there's a little verse about an angel coming along, someone who knows and helps - she's an angel. Actually I'm gonna copy it here! Hold the line please caller....


Parents through no fault of their own endure their own child's screaming, squirming, spilling/vomiting, pain, excessive wind, sleep deprivation, feeding difficulties, dehydration and poor growth only to resort to medication, operations, alternative therapies, diet management and self help strategies to overcome a disease frequently misunderstood.

They doubt their abilities as parents, as mothers, as medical providers, nurturers, incubators, but still try to provide the educational, loving environment expected of a new parent. They trial advice from every possible avenue in order to 'cure' this debilitating disease through a cloud of misguided advice and negative comments from family, friends and professionals alike.

This is not how it was supposed to be.

Then an angel appears, sometimes in the form of a friend, a family member or a professional who really listens, acknowledges the difficulties, empathises, cuddles (both the baby and you), cooks, cleans or baby-sits and then the angel, that 'needle in the haystack', the angel who has walked that road before us, who offers advice and support derived from experience not textbooks. That feeling that you are not alone, you can survive, as can your marriage or relationship and that it doesn't last forever.

And then, once the worst is past, that thought from the powerful force that is motherhood that enables us to risk enduring it all again for another beautiful, original, heart stopping masterpiece."

Last night we videoed Caelan's spasm things, it felt so horrible to do but if it helps then it was worth it. He didn't do one of his worst ones and I didn't let it go for long as I can't bear to see him in that much pain. But at least it shows what happens and that he's fine and happy when it comes on and what we do to make it go. Because I didn't let it go for long he didn't do his sucking in of air and horrible scream afterwards, but I already felt like a bastard of a mummy letting it go for as long as I did! Hopefully the doctor can shed some light on things. I'll definitely be changing the liquid to granules as well.

1 comment:

Ed Orange said...

Hi Saff & Chris. Love your blogsite. Though we're far away, and only get to internet once a week if we're lucky, we are close in spirit. Will be praying for you guys in your tough situation. Thanks for the invite to keep in touch with whats happening this way.


Ed & Toe & kids