Have you ever had anyone say to you that you couldn’t do something because you already had too much responsibility caring for your child with special needs?
I’ve heard that plenty.
Do your child’s disabilities limit you? Well, for me, I’d have to say, it’s both yes and no.
Yes, my 4 year old's unique special needs make a lot of things more difficult and more time-consuming.
Take for instance flying on a plane, even if it’s only a hop over to mainland Europe.
I made the comment to her older sisters during the summer on one such flight, that we would probably have about one quarter of the luggage, if it weren’t for Brielle’s ‘stuff’.
Compressed oxygen and oximeter – check, wheelchair – check, walking framer- check, ultra-safe 5 point harness carseat – check, high-speed blender-check, blended food and PEG feeding supplies- check, airplane harness – check, you get the picture.
Even going for a car ride can be difficult, as we have to time it well with her feeding.
Unfortunately she is still very prone to vomiting up her tube-feed if moved too quickly or riding in the car, especially on winding country roads too soon after her feed.
Taking a Sunday stroll or a Saturday hike is complicated by questions like : will Brielle be warm enough, will there be some flat terrain for her to use her walker, when will she get her tube-feed?
It is also supremely harder to find somebody willing and able to watch/babysit her than our other girls. She has mobility, communication and feeding issues to name but a few.
Thankfully we’ve moved closer to family who are able to help, and we do get some respite through the community children’s nursing team once a week.
I’m an eternally positive and optimistic person, I like to think that anything is possible, despite her disabilities!
I recently was a successful live kidney donor for my father-in-law, their Granda. It’s been an amazing experience and has made such a difference to Joe.
My in-laws’ first reaction to my offer and suggestion, was “Oh no, you of all people can’t do it, Becca! You have too much responsibility with the kids and especially Brielle.”
I got mixed reactions from acquaintances, friends and family alike when they heard of my plans to donate a kidney.
Some very positive and encouraging, others very negative and begging me not to do it, questioning my reasoning and sense.
If you know me, you’ll know I can be determined and headstrong, so I eventually won my in-laws over to the idea.
All the tests worked out beautifully, and I planned out lots of extra help in the weeks of recovery following the surgery.
My girls and the rest of the grandchildren need and love their Granda – I’m blessed to have been a small part in keeping him here.
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