Sharing a post by Tessa from xox

I’m in a unique position, and I know it.

Click on the link above to read Tessa’s latest blog. It’s spot on.

“The reality is that having a special needs child is HARD. When people grieve the loss of the child they thought they were going to have, they are also grieving the life they thought they would have. The reason they have to grieve that life is that society is not built for these families”- so true Tessa.

I don’t follow many blogs at all, but Tessa & Eva’s journey has definitely captured my heart from the start.

I could relate to so much of Tess’s recent post on so many levels, and although I haven’t lost Chiara, I certainly have lost the daughter I would of had, had she not suffered a severe brain injury.

As the days go by, the impact of her physical limitations is becoming increasingly evident. Leaving the house is getting a little more challenging each and every time, as she is getting heavier and not able to manage her own body weight or maintain balance. It’s all the transitions that build up over the day, that leave us feeling exahusted. Lifting her in and out of the bath, on & off the toilet, from room to room, up and down the stairs, in and out of the car, holding her body upright as we change clothes, working ways around her body’s rigidity in so many positions, holding her at social functions..

But we’re re-writing the way forward as we navigate this new way – so we’re doing everything we can to provide opportunities for brain growth. Sharing the journey, support from family & friends and having a belly laugh as much as we can in those special needs “moments” are the key to this bumpy ride.

Two words:

Faith and Love –

and right now we need LOTS of it….

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  • Oneinamillion August 2, 2015   Reply →

    You are one of the amazing mothers I was thinking of when I wrote that piece. xx

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